Ryan O'connell

Crip Times Episode 10: The Ryan O’Connell Episode

It’s the season finale of Crip Times! Buckle up for lots of LOLs and too many puns. This week, Kayla, Kristina, and Drew are joined by Ryan O’Connell, creator, writer, and star of Netflix’s Special. He’s done other stuff too but ughhh, who cares?

We talk about cerebral palsy, the power of authentic disability representation, pushing the envelope of gay and disabled sexuality on screen, pandemic challenges specific to disabled people, and the ‘well-meaning’ ableism that can show up when we’re just trying to live our lives.

“I will be obsessed with anything queerness and disability ’til the day I die. Like, I am just getting started. I will tell as many stories as I want about that. I will be given the space to do it”

We move into a conversation about storytelling as activism, and the challenges of learning and growing in your disability politics in a very public way. How do you tell authentic stories, without catering to an abled audience? How do we deal with internalized ableism, and the feeling of ‘needing to do more’? How do we push back against societal messaging that one marginalized story is enough?

CRIP TIME’S FAVOURITE QUOTES:

“Well, I think the power of representation cannot be underestimated. Like, growing up I never saw anyone that looked like me, ever, and that kind of implicitly told me that I did not matter. So, I was like okay! Message received! Off to therapy I go.”

“If I had seen a show like this…if I had known this kind of life was possible for me it would have, you know, saved me a lot of years at the ‘I hate myself’ fair. I just think that that’s the power of TV and film, is being able to introduce people to stories and lives that they wouldn’t necessarily be exposed to and creating empathy for them. And then for the people that you are exploring, it’s giving them this message that they matter. That they are important. That their story deserves to be told.”

“Hollywood is addicted to profiting off the pain of marginalized people. Being able to be like, ‘Get that Oscar honey! Get that award season baby! We are so brave! Omg look what we did. We are so good!’ And then you are like, actually look at the liner notes. Wow. Like literally no one involved in the creation of this thing actually is part of the community that you are portraying. Great job! Dot. Dot. Dot. So, I think we’ve moved past like, it’s just enough that you make a movie about it or there’s a tv show about it. No, no, no honey. You need to employ the people from the community that you are portraying. You need to advance them. Give them power, money and jobs.”

“I feel I’m always racked with this guilt and this feeling of like, I could do more, I could do more. Because Special is a very scrappy show with not a lot of money. And we don’t have a lot of resources. And so, for example, we shoot on location. We don’t really build sets. We are shooting in real apartments which are of course, spoiler, not handicap accessible. So that already limits who we can have for crew. I wish I had Ryan Murphy money and Tyler Perry money where I could just build an accessible compound where people could go and film and do whatever, whatever. But I’m not there yet. Hashtag goals.”

Ryan: Well, I think disabled people make these small calculations a million times a day.

Kristina: A hundred percent.

Ryan: And by the way, I feel like I have always been so addicted to routine and structure, and I feel like it’s so hard with disability. Like what came first, the chicken or the egg kind of vibes. Where it’s like, I live my life in such a way where I do the same thing every day. I eat the same thing every day. I go to the same coffee shop every day. And I wonder if that’s not so much an obsession with routine as so much of as an aversion to any kind of surprise. Because I don’t like navigating anything that I don’t know what will pop up. I remember when I went to Europe, LOL, when I was 23, post-grad vibes. I was just like, every day there was some kind of new troll that I had to navigate with like, a door or a key. I just couldn’t conceptualize what was in front of me because it was all new. I think that’s when my brain has a hard time processing things a little bit. It takes me a second to orient myself. So, that was a really stressful experience. I feel like I’ve set up my life in such a way where there are no surprises. It’s like, I know how to do every single thing. You know what I mean?

Kayla: I think it’s a type of energy calculation that non-disabled people will never understand.

Drew: Its Crip Tax, is what it is. You really have to over-think about what you can do and what you are able to do. Do you have the energy? Will you have the energy to do these things?

“People have this weird sense of entitlement over your body if you’re disabled. Like they feel that they can say anything, they feel they can ask anything. And as someone who is always making mental calculations into how I’m being perceived and how I’m coming off, it really blows my mind that people just have no shame and just do whatever they want and say whatever they want, without any kind of thinking.”

“I think I have this anxiety because I don’t see myself and an activist, per se. I think my form of activism is through storytelling. That’s the medium through which I do. I’m a disabled person who, like, goes through the world with the confidence of Rob Schnieder in the late 90’s and I think that’s like my own form of activism.”

“People should question why they are getting so emotional and why it’s so important to them that Ryan knows how to walk. Why is that so fucking important? Like, why are we not holding the world to task to make it so that’s not the end goal? That people can live within the confines of their ability and not have to suffer and not be left out. Not be left behind.”

“It’s so hard because I feel like Cerebral Palsy has gifted me with a lot of amazing qualities in terms of being productive. In terms of being kind of scrappy and being like, ‘Let’s fucking figure this out!’ Like MacGyver vibes. But I also think I wish I could be kind to myself and let myself take breaks. I’m even triggered when I get a cold. That’s also another reason why I don’t want to get Corona even if it’s mild. It will wreck me for weeks because I know I’d be taken out for a few days. We talked about me getting injured on the airplane being all hunched over and stuff. Those events are deeply, deeply triggering because they symbolize a loss of control. I feel like so much of my energy is like, I was born into a body I could not control, so now in every other aspect of my life I’m going to exert control where I can. That’s where I find solace.”

Ryan: But it was a really eye-opening experience of like… a reminder that I’m still not able to take up so much space as like, a straight white guy who can literally tell the same story over and over again, and still be like, Give me more! Give me more! You know what I mean?

Kayla: Like straight white people kissing dot com. 

[Everyone laughs]

Ryan: Seriously!

Kristina: Yup.

Ryan: Or another show that like, humanizes cops? And you’re like, LOL.

[Everyone laughs]

Ryan: You know what I mean? You are like, Honey! You gotta stop doing that.

Kayla: Yeah.

Ryan: Again, it’s this obsession with only taking up the bare minimum of space and if you get any space at all, then you should feel lucky and grateful that that happened at all.

Kayla: Yeah, you should roll over and die now in your thirties. You did it! That’s it.

Ryan: I’m obsessed. I will be obsessed with anything queerness and disability ’til the day I die. Like, I am just getting started. I will tell as many fucking stories as I want about that. I will be given the space to do it, and everyone else can go fuck themselves. Is how I feel!

ADDITIONAL LINKS:

FULL TRANSCRIPT:

[Begins: 00:00:00]

Narrator: You are listening to a Wheels on the Ground production. 

[Jazz music playing]

Yousef: Hi and welcome to the tenth and the final episode of the first season of Crip Times. Today we will be listening to Ryan O’Connell. Ryan is a writer, actor, and activist as well as the creator and star of the Netflix series Special. Kick back and laugh with your hosts Kayla and Kristina, as well as our guest host for the episode, the creator of the Wheels on the Ground podcast network and host of the Disability After Dark podcast series, Drew Gurza. 

Kayla Besse [KB]: Hey everyone. Welcome back to Crip Times. It is Sunday afternoon. It is a January pandemic Sunday. So, we are doing what we can. This is Kayla. I’m here with Kristina and the one and only Ryan O’Connell. Hi Ryan!

Ryan O’Connell [RO]: Hi! Every day feels like Sunday in a pandemic. Don’t you think?

KB: Yeah. Did you see that tweet that was like, ‘We all feel like shit because it’s like every day is the Sunday Scaries, but like for the rest of an indeterminate amount of time.’

RO: I haven’t seen it, but I feel it and I relate to it. [laughs]

[Everyone laughs]

KB: Yeah. That’s real. So, for listeners or transcript readers who don’t know you, could you introduce yourself?

RO: Yeah. Uh, I’m Ryan O’Connell. Um… I have Cerebral Palsy. I made a show called Special on Netflix which I wrote, created, and starred in. And I… Yeah. Season two is coming out sort of soon and blah blah blah blah. [laughs]

[Everyone laughs]

KB: That is quite…

RO: Is that good? I don’t know how to introduce myself. I’m bad at this, babe.

KB: I’m sorry. It’s all good. You said what you needed to say. Also, want to mention we are joined by Andrew Gurza today. In part –

Drew Gurza [DG]: Hello!

KB: Hi Andrew.

DG: Hi!

KB: So, this is the Cerebral Palsy episode. Myself and Ryan and Andrew all have Cerebral Palsy so it is a CP party on this day. 

RO: The most gentle of parties. 

[Everyone laughs]

Kristina McMullin [KM]: I feel honoured to have been included as an honorary CP party member…

DG: It’s a cozy party.

RO: Come on in baby. The water’s warm!

KM: Love it. Thank you!

[00:02:55]

KB: If it wasn’t, my joints might dislocate. So… uh…

[Everyone laughs]

DG: I would probably stop breathing because cold is real. Cold water and CP is a dangerous game. 

RO: I guess warm water is ableist.

[Everyone laughs]

KB: Are you saying cold water is ableist?

RO: Cold water… Coming into water… It’s all fucked up! And we don’t talk about it! But we are talking about it today! 

KM: We are talking about it today.

DG: You live in LA. What is your experience with like hot tubs? Going into hot tubs in like really hot water? And CP is also… it’s too much.

RO: Wait, I love them. I’m actually getting a hot tub installed. I’m addicted to hot tubs!

KB: No! I’m so jealous!

DG: I’m so jealous! Fuck right off.

RO: They soothe my muscles. They make my achy muscles feel better.

KB: Me too. 

RO: Is that… Is that…

DG: Me three.

RO: Okay. Yeah. So that’s the thing.

KM: So, you are getting your own hot tub that you can just like, use whenever the fuck you want?

RO: Yeah! Because I got a house and so a house needs a hot tub. Do you know what I mean?

KM: I might… I am so loving that for you. 

[Everyone laughs]

KM: Maybe one day when I have my own Netflix show I’ll get my own hot tub. 

DG: I’m loving that for you but I’m also high key hating you right now because Kayla, Kristina, and I are in the throes of Canadian winter right now. Which means…

RO: Yes.

DG: That it’s fucking cold. And I want a hot tub at my house! It’s not fair.

[Everyone laughs]

RO: It’s okay. LA is on fire four months out of the year and the air quality is so bad that you shouldn’t go outside. So, I’m sure there’s some tradeoffs. Do you know what I mean?

DG: Yeah, okay.

KB: Yeah, I felt really guilty enjoying that it’s been so warm. Warm being like zero degrees Celsius here. Because I’m like good for me, bad for the earth. But like, mmm… [laughs]

DG: Yeah. It was plus four yesterday here and I was like… this is weird.

KB: Yeah.

DG: But I’ll take it.

RO: Yeah, we’ll have to pay for it. That’s going on the credit card of experiences. Do you know what I mean? We’re charging it now but we’ll pay it off later.

KB: Exactly.

DG: The credit card of experiences. That’s a new one.

KB: Um, so Ryan this is a ridiculous question. But, how are you? It’s been almost one year of doing this pandemic. 

RO: Yeah.

KB: Isolation, quarantine. Is anything making it suck less? What makes it suck the most? 

RO: Oh my god. I mean… yeah. It’s like Herbie Fully Loaded. I mean I’ve been having a really hard time I think in the last month. Because I felt like in my brain was like, ‘Okay. If Biden gets elected and there’s a vaccine, things will get better.’ And then so it’s like Biden got elected. But he is not president yet and obviously I feel like I don’t want to be like scary Jerry. But I just feel like there’s some shit brewing and it doesn’t feel safe. Etc. Etc. So, you are like, Okay this is obviously not a light switch that goes off and on. Whatever. And then the vaccines are here but they are kind of not here and they are hard to get and blah blah blah. So, it’s like I’m being like emotionally blue balled. Where like there are things on the horizon that I’m like excited about and it feels like it could be the dawning of a new era. But it feels very like, so close yet so far away. And I don’t know about you guys, but like I don’t really know how like CP and Rona get along. I’m guessing they don’t get along. 

[00:06:10]

DG: They really… They don’t. 

RO: Yeah, I’m guessing they don’t get along. They’re not BFFs. 

DG: Nope.

RO: They are not like, you know, whatever. So, the anxiety of like getting Coronavirus and not knowing how it’ll interact with my Cerebral Palsy is like just a new fun added layer of torture. Um, and then LA county is like the epicenter of infectious [laughs] virus caseloads. They are estimating that one in three people in LA have had Coronavirus. So… anyway. TL;DR It’s been weird. [laughs] 

KB: Yup. 

KM: Yup. 

KB: Is there anything that you are like, ‘This helps right now’? Or are you just like one terrible minute at a time.

RO: Working! I’m a productive bitch from Virgo hell. So, like I’ve been like I think… like here’s the thing. The world is literally like a garbage can, so I feel like the way that I deal with it is that I create my own world that I get lost in through my work. Like, I’m just like, “Wow! This reality is literal hell. Let’s create a more utopian world that’s like fun to spend five hours a day in.” So, like I have just been the most productive I’ve ever been work-wise. And so that has been really amazing and I’ve been really grateful to be able to work throughout the pandemic and make an income and all that stuff. So, that has been like the Silver Linings Playbook. But, um, yeah. It’s like you know. “Every Day Is A Winding Road” by Sheryl. You know? Sheryl said it best.

DG: Yeah. Throwback.

RO: Yeah.

DG: I love Sheryl Crow. Maybe it’s a gay thing? Growing up Sheryl Crow was my jam. “Strong Enough” was my favourite song when I was like ten.

RO: Yeah.

DG: So…

RO: Yeah. Absolutely. It’s kind of iconique for sure. So yeah. Anyway, so we’ll see. I mean I think you know; the vaccines are going to be here short… I don’t know what’s going with Canada, I’m sure you guys have a gorgeous situation going on there.

KB: You would think.

DG: No. If by gorgeous you mean great? No.

RO: No? Ugh.

DG: The vaccines. What have you guys heard? I heard today the rollout won’t start ‘til like summer, maybe September? Maybe December if we’re lucky?

RO: What!?

KB: Yeah.

RO: I don’t… Wait, why? I don’t understand. You guys have your shit together. I don’t get it.

KB: No. 

DG: Trudeau is pretty. But he is not…

[Everyone laughs]

KB: So, Doug Ford is the Premier of Ontario and they were like okay… okay. Lockdown number two. Definitely stay home but like, choose your own adventure if you stay home? Like we are not really sure. 

DG: But like, you can go out. But you can only have five people if you are out. And if you are outside, you shouldn’t be outside. But you can go outside if you need to. But don’t go outside… It’s really confusing.

RO: But wait? What are the case numbers? Because LA just for reference, LA County has fifteen thousand cases a day. [laughs] Which is… say it with me. A lot!

DG: Ugh, you would probably feel like there was no pandemic then, if you lived in Ontario somewhere. We had… what was today? Three… just over three thousand in Ontario. But I mean, we had three hundred last August. So, three thousand is like a huge jump. 

[00:09:08]

RO: Wow. Three thousand. I would be like raw-dogging the air. I’d be like literally—

[Everyone laughs]

RO: At a brunch with forty people. Literally like Caligula style. I… like that sounds like heaven. 

KB: Speaking of utopia and creating new worlds [laughs] I don’t know how to segue I have not…

KM: Literally Kayla, I was in my head trying to find a segue and that was literally the only one I could get. So, great minds think alike. 

DG: I love listening to you try to segue though. It is officially my favourite thing right now. So, keep going.

KB: Thank you. Kristina, do you want to take this one?

KM: Yeah. Sure. So, speaking of creating our own utopias through our work: You mentioned that you are the producer, actor, writer, of your Netflix show Special. Um… we created this podcast essentially to talk about folks who are working in like arts, academia, and activism that are living in like the disability, Mad, Crip sector. Oftentimes like, Hollywood and film and television are kind of seen as separate from like the quote unquote ‘arts.’ So, like how do you see your work specifically impacting the broader art sector? Kind of outside the confines of Hollywood and film and television.

RO: Well, I think the power of representation cannot be underestimated. Like, growing up I never saw anyone that looked like me, ever, and that kind of implicitly told me that I did not matter. So, I was like okay! Message received! Off to therapy I go.

[Everyone laughs]

RO: So, I think what’s great about being in a place like Netflix is that the platform is truly so huge. Do you know what I mean? It’s not like, I mean, now I’m like dragging other places. But it’s not like… You know what I mean? The reach of being on a Netflix show versus like, a free-form show or whatever. It’s just like apples and oranges. So, I feel like when it comes to like niche content. Usually, we are used to like airing as a web series that like five people have access to via a DNA sample and then it’s literally like, Indiewire writes about it and then it gets called a day. 

[Everyone laughs]

RO: And so being able to kind of be at the Top Forty of platforms. You know? Having my show be an Ariana Grande pop song and be able to reach the masses I think is extremely valuable. Because if I had seen a show like this….if I had known this kind of life was possible for me it would have, you know, saved me a lot of years at the ‘I hate myself’ fair.  So, I don’t know. I just think that that’s the power of TV and film, is being able to introduce people to stories and lives that they wouldn’t necessarily be exposed to and creating empathy for them. And then for the people that you are exploring, it’s giving them this message that, you know, that they matter. That they are important. That their story deserves to be told. 

[00:12:20]

KB: And representation beyond, like, inspiration porn. Right? We talked earlier how you are like, ‘My character is allowed to mess up and be an asshole sometimes.’ Not be this like perfect thing handled with kid gloves. Which, yes. 

RO: Yeah.

KB: About time for that! 

RO: Well yeah, and that’s because… I also think it’s because an actual disabled person is creating it. And I’ve talked about this before but it’s like, Hollywood is addicted to like, you know, profiting off the pain of marginalized people. Being able to be like, ‘Get that Oscar honey! Get that award season baby! We are so brave! Omg look what we did. We are so good!’ And then you are like, actually look at the liner notes. Wow. Like literally no one involved in the creation of this thing actually is part of the community that you are portraying. Great job! Dot. Dot. Dot. So, I think we’ve moved past like, it’s just enough that you make a movie about it or there’s a tv show about it. No, no, no honey. You need to employ the people from the community that you are portraying. You need to advance them. Give them power, money and jobs.

KB: Yeah. What’s your experience been like in the industry in terms of hiring other marginalized folks? Having other disabled people on sets? Things like that. Has there been push back?

RO: No. But it’s… but it’s complicated. I mean first of all; I feel I’m always racked with this guilt and this feeling of like, I could do more, I could do more. Because Special is a very scrappy show with not a lot of money. And we don’t have a lot of resources. And so, for example, we shoot on location. We don’t really build sets. We, I think, we had one set for season two, meaning that we are basically shooting in real houses. We are shooting in real apartments which are of course, spoiler, not handicap accessible. So that already limits, you know, who we can have for crew. I wish I had Ryan Murphy money and Tyler Perry money where I could just build an accessible compound where people could go and film and do whatever, whatever. But I’m not there yet. Hashtag goals.

KB: Yeah.

DG: I mean you have ‘Ryan’ in your name so maybe one day. An empire. Like Ryan Murphy does! It’ll be like the O’Connell files, or something. I don’t know.

RO: I’ve heard that’s all it takes. Sharing a name. For sure.

[Everyone laughs]

RO: No, but you know. So, we’ll see. We’ll see what happens. But, um, you know. Sets are not designed with handicap people or disabled people in mind. Because they are like, it’s like when Ali Stroker won the Tony. She couldn’t even get on the fucking… She had to go another way. It’s like they never – the Tony’s never imagined a disabled person winning a Tony. 

[00:15:09]

RO: And again, I really don’t think it’s this malice of wanting to keep disabled people out. I just think that we’ve been pushing to the fringes of society, entrenched in systemic poverty. All these things working against us. They never imagined that we would be a part of things. Well guess what, bitch? We are. So, it’s overwhelming because it’s such a systemic problem that it can’t be solved in a single season of television and it requires a lot of money and resources of people getting on board. Like I can’t move mountains necessarily [laughs]. Which is ableist anyway! Am I right ladies?

[Everyone laughs]

RO: Let’s get to the bottom of that! Okay! 

[Everyone laughs]

RO: Ugh. So anyway. Like this is a long-winded way of saying like I would… for season two I was able to do some things that I was proud of. But I was also left with feeling like, ‘Okay. There’s so much work to be done.’ Like, it’s overwhelming. It is. I’m being like very frank. It’s very overwhelming. Because I want to do all the things.

KB: Yup.

RO: You know what I mean. It’s such a deep-rooted issue in our culture and our society. And it goes way beyond just like, making sure there’s a ramp on a set or whatever. Do you know what I mean?

KB: Definitely. Yeah. But when we talked earlier you were really excited and all of us are really excited, about your push for an inclusion of disability and sexuality on your show.

RO: Mmhmm.

KB: I think it’s so powerful. That’s such a cliché word. But it really is! It’s not, I had never seen that before. Like you said, growing up… never. So, I screamed when I saw that in season one and maybe you could break down that scene a little bit? When your character, also named Ryan, meets with a sex worker for the first time.

RO: Yeah. Just even to rewind the tape a little bit. When we were shopping Special around there was a bidding war between like four studios that wanted to produce it, and then take it out to networks. Okay? I was very… I was like a little story editor on Awkward. I had only been working in the business for a year. I had no power whatsoever. I was also twenty-six or twenty-seven. I had no idea what I was doing. But what I really was sure about was that I wanted this show to explore sexuality. I definitely, you know, wanted to push the envelope. Cum all over it. Etc. Etc. 

[Everyone laughs]

RO: I also knew the landscape of Hollywood was like…I knew that like CBS would be like, ‘Disabled? Gay? Cool! We love it!’ And then they would buy it and be like, ‘Wait what? What did we just buy? I don’t understand.’ And then we could never show his sexuality…whatever whatever. So I just knew that was the road I didn’t want to go on. I remember like certain studios actually backed out because like, “If he doesn’t want to go to Network, then we’re not interested.”

[00:18:03]

RO: Because for some reason, even though literally no one cares about network television and they are forty years behind. No offense. But they just are. Like who cares? They still have this weird power because they weirdly have so much money. Still. And so anyway, I’m proud of twenty-seven year old silly me that was still like didn’t know anything. But was like ‘No, I don’t want to go to Network.’ I really, really think this show should explore sex in a really honest way. I want to make sure that I’m in a place that can support that.

KM: Mmhmm.

RO: So, we ended up at Netflix. Which literally like, anything goes. Which I love. It was really, really important to me that we show Ryan as a sexually viable person with desires and with agency. And um, I also wanted to destigmatize sex work which is something that I’m very passionate about. So, it was almost like killing two birds with one very woke stone. I… It was really important to me that the sex feels authentic. That, like, I looked at like GIRLS which really portrayed straight sex as kind of messy and weird and awkward and funny and all the things. It was like revolutionary to show sex in an honest way. I was like, Oh, I want to do that. But for gay people! Because that’s the same experience as well. Sex can be, you know, sexy. It can be awkward. It can be humiliating. It can be empowering. All within the span of two minutes. So, I really, really wanted to kind of showcase that reality and um, shooting the scene was so weird. Because I could feel…very rarely do you feel in the moment that you are setting out, you are achieving what you set out to do. It’s usually like, ‘I hope that fucking worked out! I’ll see you in the edit!’ You know? That was like the scene where I was like, ‘Oh, shit. This feels like something. This feels like we’re tapping into an energy that we have never seen before. And it feels organic and it feels real and um… It was a terrifying scene to shoot because, you know, I was like naked the entire time. Blah blah blah. Honestly, from the CP perspective the hardest part of that scene was, I had to get undressed from a suit. I didn’t know acting. I didn’t know how acting works. So I didn’t realize that you like, have to do a scene forty different times. So, when you are seeing me get out of my suit, it’s not that we just did that once and it’s like, ‘Anyways!’ We shot that like forty different ways, forty different coverage. We shot that…we shot that on Brian’s coverage, meaning that I wasn’t even like in the shot but I had to get undressed. Do you know what I’m saying? My CP ass was like, exhausted. So, by the time that I was like—

[Everyone laughs]

RO: By the time that I was like, naked and on my back, I was like ‘Honey. Let’s party, I’m at Club Med.’

[Everyone laughs]

[00:21:00]

RO: I truly felt that I was just like, you know, being able to like sit back and relax. That was the easiest part in the world. Getting through that suit undressing scene was pure hell. 

KM: Mmhmm. 

KB: Oh my god. Yeah. Or um, it’s such a small moment right before that scene. But it stood out, for me, Ryan gets to… I forget the other characters name. 

RO: Shay.

KB: Shay’s apartment and looks up the staircase and is like, ‘Fuck.’ Doesn’t say anything but that just half second shot of like, Now there’s stairs too? Like I came here to…

[Everyone laughs]

RO: Yeah. It’s like, UGH! The obstacle course to lose my virginity. Like here we go at the Amazing Race! You know what I mean?

KB: Yeah. It’s just another fucking thing. 

Ryan: Well, I think disabled people make these small calculations a million times a day.

KM: A hundred percent.

RO: And by the way, I feel like I have always been so addicted to routine and structure, and I feel like it’s so hard with disability. Like what came first, the chicken or the egg kind of vibes. Where it’s like, I live my life in such a way where I do the same thing every day. I eat the same thing every day. I go to the same coffee shop every day. And I wonder if that’s not so much an obsession with routine as so much of as an aversion to any kind of surprise. Because I don’t like navigating anything that I like… because I don’t know what will pop up. I remember when I went to Europe, LOL, when I was 23, post-grad vibes. I was just like, every day there was some kind of new troll that I had to navigate with like, you know, a door or a key. You know, whatever. I just couldn’t conceptualize what was in front of me because it was all new. I think that’s when my brain has a hard time processing things a little bit. It takes me a second to orient myself. So, that was a really stressful experience. I feel like I’ve set up my life in such a way where there are no surprises. It’s like, I know how to do every single thing. You know what I mean?

KB: I think it’s a type of energy calculation that non-disabled people will never understand.

DG: Its Crip tax, is what it is. You really have to think about, you really have to overthink about what is… What you can do and what you are able to do. Do you have the energy? Will you have the energy to do these things? I can only imagine, for you Ryan, doing that scene 40 times. Yeah, you had to do it. But your poor CP body doesn’t know you are acting. Doesn’t know like, all it is, is it has to do it again! 

RO: I really honestly did not. I think the hardest part of that job is just the gruel. The physicality of it. How grueling it was, because that’s what no one talks about when they talk about acting. But obviously it’s not that big of a deal for someone who doesn’t have cerebral palsy. But like, you know for example when I had to… I trip a couple times in the show. And that was a stunt double, obviously, they weren’t going to risk this precious cargo. 

[00:23:55]

[Everyone laughs]

RO: But, I had to… I had to like get up, you know, each scene. And that was really hard! Having to like get up from the ground over and over and over again. Season two, we shot four episodes and then we shut down because of the pandemy, and then we came back. You know, I stayed physically active. Momma went on her like, hour and a half Hillary Clinton wandering in the woods sanity walks every day—

[Everyone laughs]

KB: Every day, yeah.

RO: I needed to move my body it felt like, so it didn’t get too stiff. I was really into keeping things loose and fun and fancy free.

KB: Yeah.

RO: So, I was kind of like, I’ve done a good job like keeping in shape and duh-duh-duh-duh-duh. I went back to shooting and it was like truly, like, getting hit by a Mack truck. It was like I remember one of the first things we shot was this, um, was this dance that we shot over two days. It was just me dancing for two days straight. It was like crazy. I felt like I was 85 years old. I had insane lower back pain. It was just wild! But what I’ll say—this is like, spoilers. Whatever. Who cares! The dance was full of other disabled people. 

KB: Yes…

RO: So, whenever I was feeling like, “Oh my god. I’m going to have to like, lie down. My body is on fire. This is insane.’ I would see other people with more severe disabilities than me who were just trucking along. I was like ‘Okay, bitch. Get your shit together. You are the fucking captain of this team. Put on a fucking face and go dance to fucking, you know, Rihanna. Do what you gotta do.’ But it was, it was really wild though. I just wasn’t… my body really was shocked back into having to be this like productive worker bee again. It was intense. And then also, I’m like not getting body work done because of the pandemy, and that’s something that has been kind of a moment too. Because my body needs to get re-tuned like, once a week for sure. Otherwise, things get a little Scary Jerry. And I’ve been unable to do that. I’ve been doing what I can myself to mitigate it myself, but it’s a full-time job keeping this body running to the best of its ability. That’s been a challenging part of it too that I don’t think people really understand. I’m not going to like, Bliss Spa and getting like fucking, you know what I mean. It’s not like, ‘Ah! Relaxing.’ It’s literally someone breaking my body and putting it back together so it can run more efficiently. 

KB: Yeah.

RO: Anyway. That’s also been a hard part of the pandemic, I think.

KB: Oh my god, totally. Have you ever done cupping?

RO: No. But like, I’m addicted and kind of want to try. It feels very Goop-y.

KB: I… Okay. I was so terrified because, if people don’t know, it’s literally a glass cup that gets lit on fire and then plopped on your back. Then you have these perfectly cylindrical like, hickeys for a week on your back. But it fixes my life.

RO: What does it do?

KB: It fixes my life. It’s a type of body work. It’s like massage but rather than someone pressing into the tissue it like, pulls the tissue up and it just like, it helps my back. So much. 

[00:27:00]

DG: Oh.

KB: Like, I feel like I could dance for two days in a Netflix scene afterwards.

RO: Ah!

DG: Amazing.

KB: And then I get cocky because I’m like, ‘I feel awesome!’ And then I overdo it and then I crash. But it’s my favourite thing. Yeah.

RO: Wow. I need to try that. You know, it’s funny. Getting older, the rumors are true, your body doesn’t run the way it used to. I remember, like, I had to go do a talk in New York and I was on deadline because was writing the first episode of season 2. I wrote the pilot. The first episode, like, on the airplane back to Los Angeles. I was like hunched over, just on my little whatever in my airplane. I didn’t move. I was so engrossed for like six hours and then we landed. I looked up and my body was just like, ‘Bitch! What did you just fucking do?’ For six hours! I like, couldn’t move.

KB: Yeah.

RO: I literally was like, frozen. And then I was truly in the most excruciating pain of my life. I had all these things planned. I was like pitching a show the next day. I did all the stuff, and I had to just wipe the slate clean and be like, actually… I truly hurt myself. My body is in such excruciating pain. I’m sorry, I can’t. That triggers so many issues with me that I… Truly I’m like I need to deal with. Because this is a sneak preview of what it is like to get older. I feel like I still have this ableist issue of needing to be like, bigger, faster, stronger. I feel like people, when they see me and they think of me, they are going to think of someone who needs to like, take a day off because they hurt their like body.

KB: From sitting for too long. It sounds so insane.

RO: Because of working! Because I’m fucking sitting here working and I’m trying to like, do— Because I had the genius idea of flying to Syracuse when I was on deadline to write the first episode of season two. I was like, I can do both! It was like this total like, obsessive overloading of work that I have as an issue. It obviously like, caused problems. And then guess what? Because of that, because I bit off more than I could chew, I had to cancel the next three days of work commitments that I had because I couldn’t keep it chill. But then I felt this deep amount of shame. I think anytime that I’m physically compromised is deeply, deeply triggering to me. Because of my CP, but also because I got hit by a car when I was twenty, and I developed Compartment Syndrome which was like another disability which was very traumatizing. It’s like, I need to be okay with accepting my limitations and I have a really hard time with that. I feel like I fight against that all the time.

DG: I think that’s also partially, because in the disability community we are not allowed to talk about our limitations. We are supposed to…and even with all the work we’ve done in like disability justice, we are still not allowed to talk about ‘there’s this thing that stops me,’ and its okay to talk about that. We are supposed to, as disabled people, push through no matter what the fuck is happening to us. 

RO: Yes.

DG: We are not allowed to say Hey, this sucks today! I mean, especially for you being such a public figure. If all of your Instagram was like, My body hurts today because of CP. Hollywood would be like, What the fuck is happening with Ryan?

[00:30:08]

RO: Yeah. It’s like, exactly. I feel like, You think disabled people can’t do anything? Well, I’m like a show runner, I’m an actor, I’m doing this, I’m doing that, dah-dah-dah. And by the way, luckily like I’ve been so blessed like to not have chronic pain. By the way, this is such a funny thing, every time I have like bodywork done by someone who’s never met my body, they are literally the whole time being like, WOW! 

[Everyone laughs]

RO: Oh my God! Woah! I get to have fun with you! And I’m like uh… It’s actually deeply insulting. First of all, I’m like there. I’m like Please work on me! But they are like, ‘Wait! So, like, WOAH! Woah. Your muscles are so tight.’ They’re like, ‘Are you in chronic pain?’ I’m like, ‘No?’ They’re like ‘WHAT!’ 

KB: Yeah.

RO: [still imitating a massage therapist or similar practitioner] You’re not?!

KB: [also imitating] How are you functioning?!

RO: How do you even do anything? I’m like Honey, I’m just trying to like fucking get my work done. I’m here for my oil check, just do what you gotta do. You are making me feel really not great about myself. I sort of got… I can put a timer to it. It happens all the time. I’m like honey, like God. Keep your comments to yourself! Also, I’m sorry I’m not in chronic pain. Hashtag blessed. But the way you are assessing my body right now is like deeply insulting [laughs].

DG: Yeah.

RO: Yeah, it’s shocking what people feel. It’s almost like I guess how a woman would feel if she’s pregnant. When they are like, “Let me touch your body!” Like your baby belongs to them. People have this weird sense of entitlement over your body if you’re disabled. Like they feel that they can say anything, they feel they can ask anything. And as someone who is always making mental calculations into how I’m being perceived and how I’m coming off, it really blows my mind that people just have no shame and just do whatever they want and say whatever they want, without any kind of thinking.

DG: And it’s hard because you can tell that they, not all the time, but a lot of the time you can tell they were trying to say something nice. 

[00:33:00]

DG: They were trying to be empathetic. They were trying to, like, get into your world and they didn’t know how. That’s the hardest part because, yeah, we can put them on blast. I can be like Fuck you, you are the worst. But I’m trying so hard to now be like, ‘Okay. Why did you say that thing you just said?’

RO: Right.

DG: Let’s unpack that, because I don’t want to cancel you. That’s almost worse. So, you feel like you have to use your platform to teach people all the time even when you are like, I don’t want to today. I want to just be disabled and be happy but I feel like if I don’t correct you, you are going to keep going on with this. How do I do that in a nice way, so you don’t feel like I’ve done something wrong by telling you how I feel?

RO: Yeah. It’s always like, yeah. I don’t want to play teacher today. Why is the onus always on me to educate but it like, kind of is? You kind of have to like… I remember at an Emmy event where basically you have to meet… The whole thing is weird. You have to meet Emmy voters. It’s just like, a lot. Anyway, one person came up to me and was like, ‘I had no idea you were even disabled. I had no idea!’ I was like okay… She was saying as a compliment. Like, I should’ve —I pass as—which, by the way, I don’t. I have a limp that’s clear as day, but God Bless. 

[Everyone laughs]

RO: But I’m like, actually LOL. But it was like, honey that’s not a compliment. I don’t… The goal is not to appear as able-bodied. That’s not… But you think you are doing a nice thing. You think this is a compliment because we live in an ableist society, so I get it. But you shouldn’t say that. It’s offensive. 

DG: Did you pull her aside at this Emmy event and be like, Here you go?

RO: NO! Because I was meeting like 80 people.

[Everyone laughs]

RO: And I was overwhelmed. There’s no handbook how to deal with this shit because it’s very relatable.

[Everyone laughs]

RO: You know, so I was just like ‘No, thank you so much!’ Pose. And then moving on. Do you know what I mean? Like, what are you going to do? You make note of these things because it just shows how pervasive this ableism is and how it seeps into the crevices. You know what I mean? It’s wild. 

KB: We talked… So, Ryan and I first met like four years ago now, I think? I was in LA.

RO: Over La Scala chopped salads. Get the setting right.

KB: Over La Scala chopped salads. It was very important. We were in Beverly Hills. 

RO: Did you? Did you? By the way, did you track the La Scala controversy that just happened? Did you see that?

KB: No? Oh yeah, no you tweeted about it right? 

RO: Well I, first of all, I deleted Twitter.

DG: Yeah, W T F. I was looking for you the other day and I was like, Where did he go?

RO: I have transcended the space of twitter. It’s the ultimate power move. I hate Twitter so much. I was like, there are so many more interesting ways for me to feel bad about myself. I need to exit this party that I never liked and was never having fun. Yeah. I’ve been off of it for months. I’m truly addicted. Highly recommend. 10/10. 

[00:36:05]

RO: But La Scala underwent some backlash recently because they were basically pitching in their takeout containers, they were slipping a note to their customers saying Hey, we are taking the temperature. We are thinking of throwing a New Year’s Eve dinner. Iconicly the last line was Be discrete and tell everyone you know. Well, those two things don’t make sense. 

[Everyone laughs]

RO: Listen. Listen. La Scala is my church so ultimately, I, like so here’s how I feel about that. I love how they are like ‘Let’s talk about disability!’ and I’m like, ‘La Scala let’s weigh in.’

[Everyone laughs]

RO: Give the readers what they want. Basically, the government in America has left everyone high and dry with no kind of road map on how to deal with things. A lot of restaurants are closing because they have no support. I feel like, in the pandemic, there is a lot of misdirected anger towards the source when I’m like, we should be mad for being orphaned by this government that has forced restaurants into compromising positions to make ends meet. 

KB: Yeah.

RO: But I feel like we feel so powerless because the government is this huge entity that we can’t quite grasp so we try to throw our rage hoes towards the local level. To me, it’s very misdirected. Anyway, that’s—

[Everyone laughs]

RO: Um, but yeah. Anyway. So, we were at La Scala. Kayla, sorry. So that’s La Scala. 

KB: Yes. I feel like it’s the beginning of every cliché magazine profile. Like, he delicately took a bit of his La Scala salad. We were talking about how Uber drivers love to ask you what’s wrong with your body [laughs].

RO: Yes. They do. Five stars.

KB: You call Uber and especially when you’re alone…it happens to me all the time, it’s always men. And they’re like, ‘What happened to you? Wait, are you okay? Let me get the door.’ I don’t know if they think you are injured slash drunk. It happens all the time and that day, another thing that happens and I think happened to us right afterwards. We went to Crate & Barrel. I think it was Crate & Barrel?

RO: Iconic. What were we doing there? I was like Here’s a fun time in LA. Here’s the Crate & Barrel in Beverly Hills that I know from Canada that you’ve been dying to try! I feel like such a bad host.

[Everyone laughs]

KB: No, you were like ‘Hey. What are you doing right now? I need a wine rack. Do you want to come?’ I was like, Of course I do! 

RO: L O L! Forcing you to get a wine rack with me.

[00:38:55]

DG: This is some hardcore foreshadowing for when Ryan and I hang out. I know where we are going.

RO: Oh my God. So on-brand!

KB: It was really glamourous. So, we are shopping for a wine rack and it was just so…people don’t know what to do when there’s two disabled people, visibly disabled people together. The store person is like looking you up and down, like are you good? It’s very funny to me.

RO: And I’m very Julia Roberts in Pretty Woman. I’m like, ‘I got money to spend here!’

KB: Yeah.

DG: Did they think you were dating because you are two disabled people? I’m sure somebody must’ve walked up to you and been like, ‘Oh. Are you together? Good for you!’

RO: No, I think they thought we escaped from like, the disabled factory. We needed to like go back to our home.

[Everyone laughs]

RO: You know what I mean?

KB: And then the only other anecdote, we can cut this, it’s not important. The only other anecdote from that day is that you were like do people say, ‘Can I pray for you?’ I was like that hasn’t happened to me. The very next day I was walking down the street and this woman was like, ‘God Bless!’ Tries to touch you and it’s like, please stop! 

RO: Oh my God. I take full responsibility for that. I summoned that into your life.

KB: Yeah.

RO: Also, it might be regional thing. It might be an LA thing.

KB: Maybe. Maybe.

RO: Yeah, I’ve gotten that. I’ve gotten that from people on the street. I’ve gotten that from an Uber driver saying, ‘Oh, I can heal you through my tinctures.’ You are like, honey, what… People are truly just so fucking wild. It’s like, they all need to seek treatment in my opinion [laughs]. Yeah.

KB: The ableism is the virus. 

RO: Yes.

KB: For sure.

DG: Is that shirt yet? Can it be a shirt? Ryan, you know people. Make that a shirt!

RO: Yeah, oh my god. I’m very inept but I’m sure I can find a way to get that out there. 

KB: Kristina, do you want to toss us another, like, actual question or do we want to continue talking about salad? I mean, I could go either way.

RO: I know, right? Oh my God.

KM: I mean, Ryan this is your episode. A question, or just like more salad stories? Up to you.

RO: Um, we can do a question and then I’m sure that will turn into another salad story.

KM: Okay, cool. So, in kind of like other interviews and writing that you’ve done you’ve described your relationship to your disabled identity as a process of coming out that was almost more challenging for you in terms of coming out as gay. So, with where you are at now in your life, what is your relationship to a Queer-Crip identity in terms of your activism and representation in the world? 

RO: Oh my God. Again, such a Herbie Fully Loaded question. First of all, I feel like I have such anxiety because I feel like there’s still so much I have to learn about disability. I feel like my brain is always being expanded in terms of disability. I just read this book called Sitting Pretty by Rebekah… Oh my God. I’m blanking on her last name.

KB: Cockly maybe?

[00:41:57]

DG: No… Rebecca Tolvison?

RO: Yes, something in that area.

KB: I’ll link her Instagram because it’s really good [note: it’s Rebekah Taussig, and I’ve linked to her account in the show notes].

RO: I read that book like two months ago and my brain just expanded. It was just like, it was so… She’s like, smart. I identify spiritually and intellectually as like a bimbo. She has a literal PhD. So, you are like, Okay! I get it! You know what I mean? But her book is so smart. She just talks about these kind of intense subjects and ableism, blah blah blah. But she does it in a really succinct, thoughtful, easy to digest kind of way. Just even reading that was like okay. Brain expansion a little bit more. Brain expansion a little bit more. But I think I have this anxiety because I don’t see myself and an activist, per se. I think, in terms of knowing so much more about… like Kayla. You’re an academic. You went to school for a million years. You know your shit, capital S. 

KB: Thank you.

RO: And I don’t. I think, I guess if I was to say, my form of activism is through storytelling. That’s the medium through which I do. I’m a disabled person who, like, goes through the world with the confidence of Rob Schneider in the late 90s, and I think that’s like my own form of activism.

[Everyone laughs]

RO: Do you know what I mean? I think I have this sort of inadequacy, or like imposter syndrome that I don’t quite have it all. I don’t know it all. That gives me, you know, that does give me anxiety, but I also know that everyone’s road is different. There’s many different forms of activism.

DG: There’s something really, and I’ve said this to you before, but there’s something really refreshing about the fact that you don’t claim to know everything. That you don’t come off as this hyper-knowledgeable person on everything disability. Because I think a lot of the times when it comes to disability justice, we are expected to know everything right away, and if we don’t know everything right away, then we have somehow failed. What I appreciate about your work and the way you position yourself is that you don’t claim to know everything. You are just learning. I think there’s value in being a disabled person and being brave/confident enough to say ‘I don’t know this. But I’m willing to learn.’

RO: Yeah. I mean, even like okay. I’m going to be like totally real. So, like, there… Okay, so there’s something in season two, this is like spoiler alert, too. Whatever. I’m being so bad. I feel like I shouldn’t say any of these things. There’s flashbacks to Ryan as a baby, which by the way I’m truly addicted. Love. The kid was adorable. It’s beyond. He had CP.

KB: Yes!

DG: Yes! [cheers]

RO: Well, by the way, of course! You think I’m going to fucking hire an able-bodied— like, LOL. 

KM: No. 

RO: But you know. By the way, CP actor babies don’t grow on trees. Let’s put it that way.

[Everyone laughs]

RO: It’s not like going to the Galleria and picking something up. Anyway, he was amazing. It was all amazing.

[00:44:56]

RO: But the episode ends. Whatever. Like, there’s a moment where Ryan is struggling to walk and Karen, my mom, doesn’t know if he ever will because that was so much of my parents growing up. They did not know what my case was going to be like. So, the first three years of my life, first of all everything was delayed. Obviously. I wasn’t reaching milestones when I should’ve or whenever. But they really didn’t know where I would plateau. They did not know what my case was going to look like. I always thought about what a really intense, stressful thing not to know, you know? So, anyway. At one point, Ryan does walk, and he takes his first steps and it’s seen as this really emotional thing. There’s this gorgeous score and Jessica [Hecht, the actor who plays Ryan’s mom, Karen] hit it out of the park. It’s really beautiful and it’s emotional. I actually really get teary eyed. But then I think, Why am I so emotional? Why is it so important that Ryan is taking his first steps? Why is this such a thing that we’ve seen of like, Yes. Let’s unpack it. So of course, like, Jessica, my mom Karen is excited for Ryan to walk because she knows his life got just this much easier because we live in a world that is not as hospitable to wheelchair users as it is to people who can walk. She already knows that by walking he is going to have an easier time just baseline existing. But when we, but… that’s fine. But when you are doing a TV show you can’t have these like subtitles of like, ‘JUST FYI! This is…’ You know what I’m saying?

KB: Wait. Can we do a director’s cut where we break it down? I can be like this disability theory says actually…

[Everyone laughs]

RO: Well see when I made it, when I wrote it and we shot it, I wrote it as this really important emotional moment. Which, again, it was. This is where it gets confusing. Again, for the mom it was, but now we shot this…because of the pandemy I wrote it fucking a year ago? We shot it almost a year ago. Now I’m like, Oh I don’t want to see a beautiful moment of a disabled person learning how to walk ever again. Because I think it’s really harmful and I think, again, it’s ableism. It is. Just like in its purest form. And I think if you are going to show it, you should question why it’s so important. Like, people should question why they are getting so emotional and why it’s so important to them that Ryan knows how to walk. Why is that so fucking important? Like, why are we not, you know, holding the world to task to make it so that’s not the end goal? That people can live within the confines of their ability and not have to suffer and not, you know, be left out. Not be left behind.

DG: Wouldn’t it be just as awesome to see a similar scene in the next show that tackles disability where, you know, little baby person gets their first wheelchair?

[00:48:05]

RO: Right. So that’s where I’m going. In my new show, which who the fuck knows what will happen, it’s much more about that. But it’s an interesting thing where I have grown now as a person, as a disabled person, where I don’t… and I’m not trying to throw my own show under the bus. It’s such a beautiful moment and I don’t want to also undercut what Jessica did, like what the whole operation is. I think it’s beautifully done, but it’s definitely one of those moments where I’m like, mmm-mmm. We need to challenge why this is so… why you are getting teary-eyed about seeing a disabled child learn how to walk. You know what I mean? Why is this so important?

KB: The mommy bloggers love those videos. Kids learning to walk. Babies learning to hear. The cochlear implants, things like that.

DG:  People learning to see for the first time once they get those things in their eyes. Once they have surgery to fix their eyesight or whatever.

RO: And I get why they are so excited! It’s because their life is going to get easier. Again, our world is not structured to support them. So, but it’s like why are we trying to bend ourself? Why is that the end goal? Again, it needs to be… I don’t know. It’s like—

DG: It’s so hard. And I agree with you. I think it’s really hard and so nuanced. I think when that happens to the parents and when they see their disabled child walking for the first time, or they see the disabled baby hearing or the Deaf baby hearing for the first time they shouldn’t be robbed of that joy. Of course not! But I think my problem with videos like that, not the one you shot, I mean videos we see on YouTube all the time. Is that it’s then produced for like, the abled gaze of consumerism.

RO: It is! But my show, I mean it’s not out yet. But it feels like that was my, it was for that consumption. It just shows that in my work I’m evolving in real time, in a lot of ways. And like, by the way, season two to me is so incredible and I’m so excited for you guys to all see it and I really think you’ll love it because I think it really goes there. It’s just, I don’t know. I’m very proud of it. It’s that one moment that I’m like Hmm… okay. Why is that in? Why did we do that? What is that doing? That’s not saying… We’ve seen that before… We are not. But it’s, again, my brain wasn’t there yet when we made it. And now I am. It’s like, There you go! In real time you are seeing me figure things, out which is an interesting way to be processing things, let me tell you.

KB: Yeah, like, Oh you want to do this in public? In front of Netflix? Here you go.

RO: Yeah. By the way, I will say the disabled community, you know, knock on wood because who knows what the season two perception will be. But they’ve been really supportive of everything that I have done. Which is amazing because sometimes you can eat your own. 

[00:51:00]

DG: They like to do that a lot. 

RO: Yeah. And so, I just… I mean I’m sure someone will eat me for breakfast lunch and dinner. I’ve just been really… All I can do, with everything I do, is lead with honesty. I just like need to be completely up front and, you know, I wouldn’t even feel comfortable showing that and not commenting the way I’m talking about it now. I think you should be able to just grow in real time. I think that’s called being a human.

DG: You’ve spoken a little bit about perception and I’m curious, just curious, because so many of the non-disabled people that I have come across who’ve watched your show have immediately gone to ‘It was so great! And in the first two minutes I started to cry! And it was so amazing! And it was so powerful!’ And I get that. But also, like okay. Did you watch it for its comedic value or were you just shocked to see a disabled person enjoying themselves? What’s happening here?

RO: Yeah. I mean I don’t know, it’s interesting. I think sometimes when I think about the positive reception the show got, I’m like ‘Are we just woke-proof? Can you not take down the gay disabled show?’ Like, what’s happening? Do you know what I mean? Cause there has been some shows I’ve seen where I’m like what’s going on? Because that’s not… Yeah. But like, I… Yeah, no. I don’t know. It’s so… I’m sure it’s so personal that you can’t even tease apart what you are enjoying about it. Is it because of the storytelling or is it because you’re finally seeing someone that looks and acts like you?

KB: It’s the Old El Paso meme, like why not both? 

RO: Yeah. Exactly.

KB: The girl with the taco. That’s how I feel. It was both for me. Like, the fact that the first episode was called cerebral LOLzy, I never thought that I would see that on this earth. But the fact that the other jokes make me laugh anyway.

DG: I thought that was so funny because Ryan and I had talked before and he had used that terminology with me before I saw it. So, I saw it and I went yeah. That’s peak Ryan O’Connell right there. That tracks!

RO: Punning is a disability that I would love to be cured from, actually.

[Everyone laughs]

KB: Yeah.

RO: I’m sorry! Problematic! But I actually would like to live life pun-free, okay? It’s been a huge detriment to my world and like, I would love to live without it!

KB: It’s a disease! I share. Maybe it’s a co-morbidity with cerebral palsy. 

DG: I share it too! I have the same thing! I also love alliteration really hard!

RO: Me too. I love alliteration.

KB: I think it’s a CP symptom.

RO: Yeah. Exactly. LOL we just come up with our own. We’re like doctors. We’re like, ‘So, if you have cerebral palsy you might experience this thing called punning.’

DG: Side effects of CP might include…

RO: It’s going to be really scary. Oh yeah, you are going to be alliterating things. Honey, I mean it’s like,  wish we could do something but there’s no cure. It is what it is. It’s your body figuring things out through your mind.

KB: Yeah. Yeah. Going to have to live with that. I know, I have a couple friends who have CP and we text each other. It’s like, does this happen to you? It’s like those infomercials, but we’re like, Do you think this is a symptom?

[00:54:00]

DG: How do I get on that text chain?

RO: Oh my God.

KB: I will text you. I just feel like I get so sweaty all the time. And I’m like, is this a CP thing? I don’t know.

RO: No, I don’t think so. 

[Everyone laughs]

RO: But the thing about CP that is so crazy is that it really does affect everyone differently. That’s a thing that I’m like, that is so crazy. That someone could have CP and have experienced none of the things that you’ve experienced. It’s such a… it catches such a wide swatch of symptoms and side effects and all that stuff.

DG: And I also love that if you have CP like, when I was watching the first season, you know. There were so many markers of like, yup. Yup. That’s a CP thing. Like, yup. His gait. I can tell. 

RO: Mmhmm.

DG: I think for the CP viewers watching, there were so many moments of like, I’m included here!

RO: Yeah. No, absolutely. There’s a lot of commonalities. I think it is… What people can relate to regardless of the severity of your case or whatever, is the mental gymnastics that you have to do to navigate the world on a daily basis.

DG: I should say, I am severely sexy all the time.

RO: Yes. Exactly. Be the PR firm for CP that you wish to see in the world. 

KB: That’s also a symptom. For sure.

RO: Sexiness?

DG: Severely sexy? Yes.

RO: It’s so bad.

KB: It’s really hard. It’s really hard to be…

RO: Really, really, really, hard.

DG: That’s what they said?

RO: Oh my God. LOL.

KB: All righty.

KM: I got a few more questions. 

RO: Sure! 

KM: Yeah! And then we’ll have to go live out the rest of our Sunday afternoons.

KB: It’s like dark out here, so it feels like night time.

KM: Um, so we talked a little bit, yeah, I mean we talked a lot about ableism in society. We talked a little bit about internalized ableism. What’s next for you in this like unlearning of internalized ableism in your life, and how do you see that being represented in your work moving forward?

RO: Well, internalized ableism I like to think of as a poisonous gas that is everywhere that you can’t necessarily see or smell, but it’s just there. You don’t even know when you are inhaling it until you’re like, ‘I feel kind of lightheaded. Weird! Anyways!’ 

[Everyone laughs]

RO: So, I don’t think it’s necessarily like, when it’s a byproduct of the culture that you live in, I don’t necessarily think there’s a version where you are like, ‘I’m done!’ Like, do you know what I mean? It’s always going to be, for me at least, a very complicated journey. The only thing that I can do is really just be cognizant of it, and be able to check myself before I wreck myself. You know? Like we talked about earlier, my obsession with productivity and wanting… 

[00:57:00]

RO: I also just feel, as a disabled person, I just feel like I’m on this time clock. Not to be morbid because I don’t think I’m going to die early or whatever. Cut to tomorrow. It’s like, His last podcast.

[Everyone laughs]

RO: But it’s like, I just feel like I have so much I want to get done and there’s so much I want to do. There’s so much I want to say. I feel very like, man on a mish.

KB: Yeah.

DG: [laughs]

RO: I don’t necessarily know… It’s so hard because I feel like Cerebral Palsy has gifted me with a lot of amazing, like, qualities in terms of being productive. In terms of being kind of scrappy and being like, ‘Let’s fucking figure this out!’ Like MacGyver vibes. But, like, I also think I wish I could like be kind to myself and let myself take breaks and like… like you know what I mean? I’m even triggered when I get a cold. That’s also another reason why I don’t want to get Corona even if it’s mild. It will wreck me for weeks because I know I’d be taken out for a few days. I really, really… we talked about me getting injured on the airplane being all hunched over and stuff. Those events are deeply, deeply triggering because they symbolize a loss of control. I feel like so much of my energy is like, I was born into a body I could not control, so now in every other aspect of my life I’m going to exert control where I can. That’s where I find solace. 

DG: That is so a CP thing. Kayla, I don’t know if you experience that?

KB: Every day.

DG: Literally what you just said, it’s like oh my God. It’s me! I have to control every single detail of what I do because I can’t control anything else. 

RO: Yeah. Absolutely. It’s like, it… but like in a way that need for control has given me a lot of amazing things. But to me, it’s always a double-edged sword. It’s always like playing a game of whack-a-mole. It brings me a lot of gifts, but it can also bring me a lot of heartache. I just don’t know how to tease those things apart. I think they come in the same package and you just have to learn to deal with them and be mindful. It’s not, again, it’s never going to be a journey where like I’m going to be, ‘Okay, I conquered internal ableism. I crossed it off my list.’ I think it’s gonna always be with me. It’s always really important to understand like why am I doing this? Why is it important that I, you know… even exercising! I got really into exercising like 5 years ago because I never had a relationship to my body. I was very disconnected, which I think was rooted in self-loathing and denying my disability. My body would call me. I would never call it back. It would text, I’d be like I got a new number. XOXO.

DG: Oh, you were that guy. I hate that guy.

RO: Well, no! I was just like… Oh my God. LOL. But it was like, I just really… I felt profoundly disconnected from my body because I hated it, and I saw my body as something that…all I could see it for were its flaws or its deficits or whatever.

[1:00:08]

RO: And then I started exercising and I felt, for the first time, profoundly in my body. In touch with my body. Connected to my body. Which was incredible! But I also was floored by what my body could do because I feel like, having CP, I was just resigned to a certain level of mobility. Blah, blah, blah. But by exercising and moving my body I felt like I was conquering the things that I never thought were possible, so that was empowering. However, again, double-edged sword time. It’s like, I also felt like part of me was like, the more I was working out was trying to achieve this able-bodiedness. Like, if I run five miles maybe the CP will magically fall off of me. So that’s what I’m talking about. It’s such a tricky thing because it’s not one thing! It can be both positive and negative. Because of the ableism that exists in our society, it’s really hard to tell when one ends and the other begins. Does that make sense?

KB: A hundred percent.

KM: Yes.

DG: Completely. One million percent.

KB: That’s so relatable.

DG: Relatable content! Ding, ding, ding!

RO: That’s what I aim to give. A hundred percent relatability. Chopped salads, people harassing me at Emmy events… 

[Everyone laughs]

RO: You know. I just really am, I’m a man of the fucking people. You know?

DG: A man of the C-People, if you would [punning on “people with Cerebral Palsy”]

RO: Oh, that’s good. Again, we are not okay. You are not okay. Again, punning is like, check yourself. Take an ointment. Take an ointment.

DG: I’ll take a tincture. 

RO: LOL. Exactly. I’ll cure you. 

KB: Yeah. No. It’s so hard because then people, like, people don’t see the behind-the-scenes mental gymnastics. They only see what you put out. Right? And then they are like Oh my god. You’re amazing! You’re like, so inspiring! It’s like okay, I’m just trying to live…

RO: Yeah. Totally. Yeah. I know. 

KB: It’s really bizarre and I don’t think, like, I don’t know. If you find a metaphor to make people understand, let me know.

DG: Yeah.

RO: Yeah, it’s hard. It’s really, really hard. Also, I think there’s a certain mind fuck with having CP where you feel on both… You feel this insane sense of hyper-visibility and sense of wherever you go people are going to stare at you. Then it’s met with also this hyper-invisibility. So, you see people see you and then make the decision to un-see you in real time. So, it’s this really, really, insane mind fuck contrast of being. Like, walking around like you’re this glow in the dark sticker, but then also feeling like no one sees you and that you are just completely ignored. So that’s fun too.

KB: Or like, have you ever experienced where maybe you only talked to someone over the phone or, nowadays, over Zoom so they only see your face and they don’t know. Then you meet them in person, and they see you or you are sitting at a chair or something and they come in the room. Then you stand up and stumble out the door, they are like…you can see them try to figure it out. They are like I didn’t… I didn’t… Oh.

[1:03:12]

RO: Totally! But I have a fix for that. I think you should just star in your own Netflix show and then everyone will know that you are disabled, so then you don’t have to deal with that ever again.

KB: Oh my God. Why didn’t I think of that?

KM: Yeah!

RO: I actually don’t know, and I don’t want to call you out. It’s like hello, the solution is right there Kayla. It’s like hello.

DG: Kayla, let’s start production on that. Can I be your co-star? 

[Everyone laughs]

KB: Yeah. Maybe there’s someone who already has a show that could… [laughs]

[Everyone laughs]

RO: Who?

KB: That could pull some strings.

RO: Who? I want to kill… What bitch! 

DG: This O’Connell person we know.

RO: I threaten, I’m like Who! I’ll take him down. Yeah, it’s weird. It’s weird because I was closeted with my disability until I was twenty-eight, it has been really, really crazy to go from someone who was trying to like push CP out of his life. You know, no one really knew, to just now the whole world knows. It’s much better on this end. We talked, like, last weekend when we had this pre-call. About how… I was in Provincetown. I told you this story last weekend, right?

KB: Yeah. Yeah.

RO: Okay, so now I’m retelling.

KB: It’s for the listeners.

KM: It’s for the people!

RO: For the listen – yeah. It’s for the people!

DG: The C-people.

RO: But I was in Provincetown, which is this gay mecca at the tip of Cape Cod. I highly recommend. It’s incredible. Anyway, we went to the gay beach. I was like, initially triggered by it. You know like when, like, your friends are like, ‘Oh. It’s a little bit of a hike but it’s so worth it!’ You are like, okay. A little bit of a hike for you is literally, we are climbing Mount Everest. I’m fully Reese Witherspoon in Wild. What do I need to do? You always adjust. You are always like, Hey what’s happening. Anyway, we go to the gay beach which is truly unpleasant and hard to get to. I truly was like, I hate you all for doing this to me. Fuck you, you have no idea how hard this was, but like God bless. We go to the gay beach, we live, we laugh, we be gay, whatever. It’s fine. And the on our way back I was really tired. It’s a lot of walking, it’s a lot of being in fucking sand which is just my nightmare. Trudging through..

KB: Sand is super ableist. 

RO: Sand is not CP-friendly at all!! I’m like—

DG: No!

RO: I’m like, Wow. Sand came down to the earth and was like, Oh I know what I can do! I can make walking more complicated and insane. You’re like, Great. Thank you.

KB: Thank you so much.

RO: Thank you, sand.

DG: Try rolling a three-hundred-pound chair through it. That’s fun! 

RO: Oh my God. Oh my God. It’s so… so we were doing that and like, in the last stretch we had to climb up this embankment or whatever. It was really difficult for me because I was fatigued as all fuck. I couldn’t really get up, so I was really struggling and my boyfriend was having to help me up. Again, this experience, I have experienced this so many times in my life where my CP has felt like it’s on display and I’m struggling physically, and I feel deeply embarrassed, hot with shame. Etc. Etc. But and then while this was happening a gay walks by and was like, ‘I love your show!’

[01:06:15]

[Everyone laughs]

RO: As I’m like drenching, as I’m like drenched in sweat. Again, full Reese in Wild. Like Les Misérables. It was like this hysterical moment where I was like you know what? This would… Back in the day this would embarrass me. Delete years off my life. I would be cringing. But it’s like, this guy saw my show. He’s seen me faceplant in the first two minutes. This is just on brand. You know what I mean? 

KB: Yeah.

RO: This is like, what else would I be doing other than struggling to go up an embankment? You know what I mean? Like, hello! Like this is like, Blurred Lines baby! 

[Everyone laughs]

RO: And, uh, and so I felt this like, remarkable sense of just peace and acceptance with myself. I was like, all these people saw…every person that sees my show and like celebrates it and accepts it is like Wow! All the years that I spent being so deeply ashamed. Thinking no one would understand me. Blah blah blah. By the way, there are a lot of people that don’t. But like, having those people have that warm reception, it’s just so validating on such a deeper level. You know what I mean? It’s like, wow. It really wasn’t the big monster I made it out in my brain to be. You know?

KB: And it’s definitely like, Please take that energy and apply it to other disabled people in your life. 

KM: Mmhmm.

RO: Yes. Yes. Exactly. Exactly. Exactly. So… 

KM: Well and also, going back to you being controlling in as many aspects of your life as you can. This show is essentially just you, your ability to broaden the reach of what you can control. Because you have agency out of what has been shown. Then you kind of have the control of people’s perception because you don’t have to explain anything in the moment. You’ve controlled what people know about you. In a much more intimate way that’s broader reaching, than just living as Ryan in LA without a show. 

RO: That’s true. Putting the troll in control.

KM: Yeah.

[Everyone laughs]

KB: That’s the dream. Um… should we do our like, last question now? Do you think? 

KM: Yeah

KB: I guess I’ll say, Ryan, is there anything that you’re like burning to talk about or say, that we forgot?

RO: Um… No. Other than obviously I’m excited for all of you to see season two and I’m just like, obsessed. And I just hope you guys are obsessed. I want everyone to be excited.

DG: Obsessed.

RO: I know it’s been gone a long time. We are very much doing the Fleabag thing where we are gone for two years and being like, JK.

KB: Listen, if you do the Fleabag thing with season two like, honey, you’ve got it made! 

[Everyone laughs]

[01:09:00]

RO: Oh my God. I know! But you know what, there’s one fatal flaw. There’s no Hot Priest.

DG: Ugh! So close.

KM: Now that’s ableist!

[Everyone groans/laughs]

DG: I mean…

RO: That’s ableist! Oh my God. You know that… uh… there’s that podcast that I did. Oh, I talked about it with them. It’s called ‘That’s So Racist.’ I’m like, there needs to be a ‘That’s So Ableist.’ You know what I mean?

DG: Yup.

RO: Where everything is just ableist. LOL. I was even like, I was doing an interview the other day where I was like talking about how when you reach this position of power you want to bring down the ladder and give other people a leg up, and go up the ladder. I’m like, that’s an ableist fucking… God damn it! It’s just everywhere! God. Cancel ladders! Oh my God. Jesus Christ.

DG: Cancel ladders.

[Everyone laughs]

RO: Cancel fucking ladders! Oh my God.

KB: Yeah, no. It’s really ridiculous once you start thinking through like, most metaphors in the English language. They’re like ‘Oh, I’m so blind to that,’ or whatever it is.

DG: I didn’t see it coming…

KB: It’s just everywhere. I’m trying to decide. I think we can wrap it up! I was gonna say ‘What’s next for you?’ but we know. We know what’s next for you.

RO: Yeah. I mean yeah, season two [of Special], and I sold another show, Accessible, which I hope gets made but who the hell knows.

DG: Please make it. Please make it. It sounds so good. Please, please, please! 

RO: I hope. I hope it gets made. If it does it will be a game changer, I hope. So, we’ll see! 

KB: Fingers crossed.

RO: And then, oh! I wrote a novel. That’s coming out like, in a year because it’s novels. Everything takes forever.

KB: NBD!

DG: No big deal!

RO: I know, I’m telling you! I was really productive. I was the annoying bitch that wrote a novel during quarantine. Do you know that meme that was like—

KB: Shakespeare over here!

RO: Yeah. It was like Shakespeare wrote King Lear, so can you! Everyone was like ‘Fuck you! I was just trying to get out of bed.’ And I was like actually…. dot, dot, dot…. King Lear here we come!

[Everyone laughs]

RO: So, we… I just sold it so I’m doing edits on that. So that’s coming. I mean, that’s going to take forever because novels take fucking forever because of production.

DG: So, in two years when the pandemic… when it’s safe to go outside again.

RO: Exactly.

DG: We can take your novel to the slutty gay beach and read it together!

RO: Yes. Yes yes yes. But obviously it’s about disability because literally everything I do is about disability. Oh! Actually! This is interesting to talk about. When I was submitting that novel to places, there was some feedback from publishing houses that was like… ’cause my character is gay and disabled and that. Obviously because I’m obsessed.

KB: Shocker.

RO: Because I’m obsessed, and I’m addicted and who cares.

KM: Yeah.

RO: And there were people, but it’s a different story, obviously. It’s a completely different world. Blah blah blah. There were a few people being like, We love this, we just think it’s similar to Special. I’m like, okay. Okay. No, no, no. No, no, no. Okay. Think about Sofia Coppola. Think about Noah Baumbach. Think about Spike Lee. Think about all these directors, writers that explore similar themes over and over again in their work.

[01:12:12]

RO: Like, I feel like as a gay disabled creator, it’s like I have been given this one little slice to explore disability. Blah blah blah. If I ever do it again, God forbid, I’m considered derivative of myself. I’m considered like… and I feel like it comes… If you are marginalized, you just check the box. It’s like okay, you did that. Dah-dah-dah-dah. It’s like no! You fucking Woody Allen LOL.

[Everyone laughs]

RO: RIP. But he made the same fucking movie about New York over and over again. Over and over again! And people were like Yes! Oh my God! Give me more! I’m like, honey! He made this movie! What are you talking about? We are seeing it again. They are like, we love it!! What a vision!

[Everyone laughs]

RO: I just feel like I need to be given the same leeway and space to explore like these themes. Without being seen as, you know ripping myself off. Also, by the way, sorry that I’m making the second gay disabled story that’s ever [laughs] Do you know what I’m saying?

KB: The market is just so saturated right now!

[Everyone laughs]

RO: Yeah! They are like Ah! Another show with… another story with a gay disabled person as the lead? And again, it comes down to this…you know what it is? It’s seriously this deep mentality where it’s like, well we gave you a show…

KB: What more do you want?

RO: Like you need more?

DG: Yeah.

RO: We let you have that.

DG: We gave you that one piece of representation that you will never get again and you’re supposed to ride on that for the rest of your life.

RO: Exactly. Like how dare you have another? That’s just greedy. We gave you your one show and now you need to calm down. And it’s like, it really was shocking. I remember like my book agent was like, so furious. He, and he went out with a… uh… a novel with a trans author that’s about the trans experience, Detransition Baby. It’s supposed to be incredible.

KB: My friend just finished it and said it was the best thing she has read in years.

RO: No, and my boyfriend’s reading it now and is truly addicted. But he was telling me… maybe I shouldn’t fucking say. Whatever. He was just like, certain feedback they got was like, ‘Oh we already have our trans novel.’ Or like whatever. There’s this obsession with, again, they are meeting a quota. They aren’t even interested… and by the way, can I just say, storytelling is storytelling. Either it’s a good story or it’s not. Who cares if it’s this or that? But I just feel like there’s this like, you know, this obsession with just looking like, the bare minimum of woke. Being like, We did that! No, no. If you are actually interested in storytelling and what we have to say, it shouldn’t matter that, God forbid, there’s more than one. Like fuck off!

DG: And I mean, even if it’s that. We’ve seen Bridgerton. We know what could be made out there! Okay? So like…

RO: It’s just like…

[01:15:00]

RO: It really, really, made me like Steamboat Willy full of rage. And by the way we found an amazing home. A lot of people did… a lot of people did get it, and loved it, and wanted to do it. So, like, it wasn’t like I was, you know, left out in the cold. But it was a really kind of eye-opening experience of like… a reminder that I’m still not able to take up so much space as like, a straight white guy who can literally tell the same story over and over again, and still be like, Give me more! Give me more! You know what I mean?

KB: Like straight white people kissing dot com. 

[Everyone laughs]

RO: Seriously!

KM: Yup.

RO: And they are like, you know? It’s like… Or like another show that like, humanizes cops? And you’re like, LOL.

[Everyone laughs]

RO: You know what I mean? You are like, Honey! You gotta stop doing that.

KB: Yeah.

RO: But it’s like, yeah. Again, it’s this obsession with only taking up the bare minimum of space and if you get any space at all, then you should feel lucky and grateful that that happened at all.

KB: Yeah, you should roll over and die now in your thirties. You did it! That’s it.

RO: I’m obsessed. I will be obsessed with anything queerness and disability ’til the day I die. Like, I am just getting started. I will tell as many fucking stories as I want about that. I will be given the space to do it, and everyone else can go fuck themselves. Is how I feel!

KB: That’s a mic drop moment right there.

[Everyone laughs]

DG: I was gonna say. That’s the end right there!

[Everyone laughs]

KB: Um… no. Yeah. Thank you. That’s so… it’s really, also, validating in a weird way to hear that like, that every industry is like that.

RO: Every industry. Yes.

KB: Academia is like…

RO: You think books? You are like, books. Okay, they’re smart! They are with the books! It’s not like Hollywood. It’s books! You know? No. It’s the same mentality. It’s the same like, checking a box. It’s the same kind of like, giving you this little crack in the doorway to slip through. But nothing more.

KB: Mmhmm. And I was just thinking too how like in the world of academia, which is also so ableist. It’s like…the education that can be done through one well-placed meme—Kristina and I were just having this conversation—can do more work to change people’s minds than like, a dissertation. 

DG: A whole thesis.

KB: Yeah. Yeah. It’s fascinating. But that’s the world we live in!

RO: Yeah, it’s crazy. I have this great mentor, Greg Berlanti, who’s this producer and showrunner who is great. I was talking to him about it. He was like, ‘Ryan, I wrote high school shows for years. I was obsessed with teenagers. I just kept doing high school shows. That was my high school period. You are allowed to do whatever you want to do for as long as you want to do it. There are forty million different ways to tell a story that’s exploring similar themes. You are allowed to explore those themes however long you want to do them! That’s your right as an artist!’ I was like, Okay! I’m an artist! Addicted.

[Everyone laughs]

[01:18:03]

RO: You know. But anyway. I just like, it was very validating to hear that from another creator that was just like, yeah. You can do whatever the fuck you want! 

KB: That’s sweet.

RO: Yeah.

KB: So, we ask all of our guests as our last Q every time: What is bringing you, or what has brought you joy recently?

RO: Oh my God. That’s a really good… Okay, so my sanity walks are giving me joy because I just moved to a new neighborhood that I obviously can’t really participate in. So… [laughs] 

[Everyone laughs]

RO: So… um… What I’ve been doing is I’ve just been going on walks around the neighborhood and exploring different kind of facets. It’s this really… like I live next to this really historical neighborhood called Angelino Heights that is full of all these Victorians from the early 1900s. My house is actually 120 years old. LOL. I’m fucked. I can’t even like, change a light bulb. 

[Everyone laughs]

RO: That’s been really fun. Kind of exploring different parts of the neighborhood and feeling like I’m getting to know my new surroundings. Being in my backyard brings me joy and my work brings me joy, and stress. But mostly joy.

[Jazz music begins]

KB: Crip times is presented as a part of the Wheels on the Ground podcast network. This podcast is produced by us, and supported by Tangled Art + Disability and Bodies in Translation.

Yousef: Thank you for listening to Crip Times. We hope you have enjoyed listening to the series as much as we have enjoyed making it. 

[01:19:50]

 

Jenna Reid

Crip Times Episode 9: The Jenna Reid Episode

On this episode, Kayla and Kristina are joined by Jenna Reid for a conversation that feels like a bolt of energy to our weary pandemic souls. Jenna speaks about Mad Movements, their histories, their teachings, and how embracing Madness can support the goal of abolition. We discuss the role of Madness in bringing an ethic of care to academia, the (in)accessibility of online activism, and the politics of working from bed.

“We needed art that provoked change in the world, not that provoked change in us.” 

Jenna speaks about her art practice, emphasizing the need to embrace slowness into not just our society, but also our own lives – what might a rejection of productivity bring to our activism and community building?

We end the conversation speaking about how to honour our rage, and how to find joy and love in the face of social injustice.

CRIP TIME’S FAVOURITE QUOTES:

“I also am deeply aware that this idea of online activism actually isn’t inherently accessible to all. So there are many, many folks within the Mad community and beyond that don’t have access to adequate devices to be organizing online.”

“I think it’s not just about the online or the in the bed but that our lives are kind of full and our activism is happening in really rich and diverse ways.”

“When the pandemic started to unfold around us and we started to have more information around how deeply it was going to impact our lives and our communities, the first things I was thinking about is how are we going to show up for each other? How are we going to hold space for each other? And what types of things do we need?”

“How do we adapt and adjust our already reciprocal and set in place care networks, um, and love for one another in a way that’s uh … that adapted to what was happening in our lives at the time.”

“How have I brought that humanness into my teaching and it was, I was mentored in that way. I was mentored to treat people with um, with that ethics of care.”

“Everything I have always done has always started from what I’ve learned from the survivor community.”

“Movements are not ever completely separate, because we all have you know, intersecting identities that have us take up space in multiple movements.” 

“Is that in fact I don’t value um, kind of critical theory academic knowledge in the way that other academics do.”

“I approach all the work. I start from the point of kind of in who’s interest and determined by who and why, and to what impact.”

“I’m so um, in awe and inspired by artists right now in particular, artists who are critically engaging in where we’re at in this time and moment of conversations of abolition becoming central within all spaces.”

“Just the very nature of being white um, being a woman, coming from a middle class family, all of these things meant that both my Madness was read very differently, the level of threat was read very differently, and my ability to kind of um, develop my own kind of care circle was possible in different ways.” 

“I think over the years what the psych survivor community does and has taught us is that we’ve learned that we have to build our formal and informal kind of networks of care differently.

“We have always known, even with privilege, that medicalized or institutionalized intervention always is uh, reduces our agency and autonomy, has varying degrees of violence and when you are um, kind of more privileged there’s less violence but there still is threat and possibility of violence. And the violence is uh, is often lethal depending on your position in the world.”

“I’ve learned from organizing but also from personal experiences is that what we need in this world, not just to survive but to flourish, is things like housing. We need things that are peer-led.”

“We need to be together. And so it’s like we needed peer-led staff, we needed jobs, we needed to be part of community, we needed art and we needed art and cultural things that were not therapeutic.” 

We needed art that provoked change in the world, not that provoked change in us.” 

“Things haven’t changed based on requests for reform. Or requests for giving more resources to institutions like police.” 

“Defunding, disarming, dismantling, and abolishing the police is a thing that is very clearly the next step.”

“I think that what we learn from the movement is that we haven’t come to this time of abolition quickly. We haven’t come to this time of abolition with no practical or theoretical knowledge. And we have come to this time of abolition distinctly because it’s a matter of life and death.”

“I think art practices help us to think creatively about what type of change we want, how we want change and how we get there.” 

“All of this activism matters and the art I make kind of engages with pulling that together and seeing it as being in conversation and not in conflict with one another.”

“Our movements require us to be in relation with one another. Our movements require us to be constantly in this both reflective and also active state. And that action requires that we are doing things but that doesn’t require a particular pace of doing things.” 

“It’s about repositioning or rethinking our understanding of what it means to be involved, engaged, and active.” 

“Involved, engaged, and active means that in fact, we need to be working towards change. But we don’t have to think about work as being this productive, neo-liberal thing.”

“It’s not entirely my space to be at the centre of dreaming of what a new future looks like.” 

“I have deeply learned over the years is that decentralizing, kind of my visions for the future is an important thing to think through  because I hold a lot of power in this world. And people who my ancestors, people who have existed in the world with the, with the power that I do, have not, have not built up futures that are viable. Have not built up times that are viable.”

“What I think that I dream for is this really valuing of reciprocal, sustainable communities.”

“I want to see a future where we are, where we are ready for the change now. But that we’re willing to be humble enough to know where our place in that change is, and how we might be a part of bringing about that change.”

“I have spent a great deal of my life being very kind of filled with rage at injustice.” 

“It was understood that our anger at injustice can provoke a movement. But, a place that I’ve come to after kind of making sense of knowing that it is ok to be full of rage at injustice is that my joy is coming from knowing that where I really want to be is in a space of love.”

“In a space of community, in a space that is about continually having a reciprocal process of showing up for each other, in very meaningful ways.” 

“But it’s also a beautiful thing to learn how to receive love. And to learn how to really try to honour the rage but not … but not stay in that rage really try to centralize the space for love and for moving forth with that love.”

“I’ve always loved this kind of uh, ability to feel that kind of movement of, uh, through anger. But I’m, I’m really present to wanting to build and to receive and to also centre love. 

Cause it feels joyful! And I think we need that in these times. We really, really need that.”

ADDITIONAL LINKS:

FULL TRANSCRIPT:

Narrator: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Kristina McMullin [KM]: Hi all, welcome to the ninth episode of Crip Times.

Yousef Kadoura [YK]: Today on Crip Times we will be listening to Jenna Reid. An artist, activist, and reluctant academic. With your hosts, Kayla and Kristina.

KM: So, hi Jenna, thank you so much for joining us today on the Crip Times podcast. Um, when I, when we were planning out this podcast there are certain people I really wanted to be able to have a conversation with for my own interest, but then also that I wanted uh, to be able to share uh, folks with the larger community and Jenna you’re a person that I wanted to talk to for my own interest and also really wanted to shine a light on the work that you’re doing and the human that you are.

So, for folks who don’t know you and aren’t familiar with your work, are you able to introduce yourself?

JR: Yeah, sure. So I’ve come into a practice that when I introduce myself I often reference the late psychiatric survivor Diana Capone in saying that I am a woman who wears many hats. And the roles that I typically bring into my conversations is that I am an artist and I am an activist, and I tend to refer to myself as a reluctant academic. Um, so I’m going to tell you a little bit about how I came to those spaces. So, I came to Toronto somewhere around 2004, or 2005. And was almost immediately introduced to the psychiatric survivor movement. At that time what we know now as Mad studies was really only starting to develop in the academy. And so while my experiences of discrimination in post-secondary education is what led me to connect with people in the movement, and it was a central part of the organizing that I do and that I did, academia and academics didn’t have such a central or prevalent place in the larger movement as it does now.

[00:03:00] Um, yeah. So I think that um, because of that the more that uh, what we see happening is more and more people are starting to get introduced to critical ideas of Madness and the organization of the Mad movement through academia, and this drastic impact on the ways in which we’re coming to understand what’s happening in our movement. Um, but I think for me, I am always present to what it meant to come into the movement at a time when it was not super popular in academia. If not to say that it really didn’t exist much at all.

For me, uh, coming into the movement was always about relationships. So, those relationships were multi-generational and cross-movement and they occurred in complex places and spaces. So, sometimes it did mean knocking on someone’s door to start a conversation, having a cup of tea with someone, spending time together physically, but also a lot of our connecting happened online. Some of my most long-lasting relationships within the community started on a listserv. Which, which is really interesting. We often think of Toronto as a hub for organizing of all sorts, but for decades the internet has been central in how Mad people come together across space and place, which included for me at all hours of the night or the morning. It meant it often happened in my bed, a lot of my activism has been tied to the site of my bed which I think is a really beautiful thing.

But yeah. Apart from that I think that the work that I’ve done is connected to community, um, spanning these practices of being an activist and an academic and an artist. So none of these roles really exist separate from one another and the issues that I’ve tended to organize around are less about identity politics, which is kind of a really central focus in what’s happening in academia, and instead they’ve been focussed around issues of inter-institutional violence and experiences of discrimination.

So, this is always meant that the issues span across and between overlapping and disparate communities. So that’s a little bit, I guess – or a lot of a bit – about me, a lot of how I entered into the space of the work that I do. And the ways in which they don’t, it’s impossible to tease apart those various roles that I take up.

[00:06:00] Kayla Besse [KB]: Wow, that was a stunning intro. Um, and it’s … you know, I think you’re an expert especially in this moment where everybody has had to move their organizing online in some capacity during the pandemic. The broader public has a lot to learn from Mad folks and Disabled folks who are like ‘yeah, I’ve been working from my bed for like ever, so join the club!’

JR: Yeah for sure, and I think that there’s layers to that as well because also within the spaces I’ve been welcomed into in my organizing, um, I also am deeply aware that this idea of online activism actually isn’t inherently accessible to all. So there are many, many folks within the Mad community and beyond that don’t have access to adequate devices to be organizing online, that don’t have access – that are more used to using for instance the internet in public places. Uh, which is not possible in a pandemic, or not in the same ways.

So there’s complexities, right, organizing online is deeply rooted within our movement and yet also … the, the inability – or not inability – the lack of resources to have access to online spaces is real, right? There’s other ways that folks have organized that are also not in person. So and you could look at that in terms of like the, the … using the phone or using you know, calling after hours when 9-5 services weren’t available. I think it’s not just about the online or the in the bed but that our lives are kind of full and our activism is happening in really rich and diverse ways.

KB: Hm. That’s so important, yeah.

KM: So – in your, like, life, what has um, activism and community looked like in a period of COVID-19, this pandemic and quarantine and isolation?

JR: Yeah so when the pandemic started to unfold around us and we started to have more information around how deeply it was going to impact our lives and our communities, uh, the first things I was thinking about is how are we going to show up for each other? How are we going to hold space for each other? And what types of things do we need?

And that meant um, holding emotional space with colleagues, with friends, with loved ones, that meant offering skillsets.

[00:09:08] So whether it was within say my academic practices, making sure that my students new that I was there as a human first, that I was um, able and willing to be flexible and understanding that a pandemic is going to impact every aspect of your body and your life, knowing that your ability to focus is going to be impacted. That you’re all of a sudden going to be um, in close proximity with those your live with all the times. That’s gonna impact you and thinking about how do you show up to support people through that? It also meant making sure that my colleagues didn’t feel over-burdened with what were new work expectations and instead try and think about how we offer each other generosity in the tasks that were required of us. It meant reaching out not just to uh, like to chosen family. Right? I’m queer, and this notion of having complex intimate units within my life meant that I was thinking about who is going to be having uh, needs in terms of getting food? Who uh, is going to need checking in on late at night? What do I need from the people around me? So it was about how do we adapt and adjust our already reciprocal and set in place care networks, um, and love for one another in a way that’s uh … that adapted to what was happening in our lives at the time.

KB: That’s gorgeous, yeah. And it’s, it’s … the way, like, the way we survive especially as Mad and Crip and Disabled folks. Like, I agree, chosen family has showed up for me and saved me in this time and supported me too. Yeah.

KM: Yeah, and I think listening to you speak, the way you talk about your academic practices, being about the human, and being about care, not only for yourself but colleagues, how have you been able to navigate the academic world with this human and care focus?

JR: Ha! [Laughs] I mean, there’s no easy answer to that. I don’t know if I have figured out how to navigate it. I think one thing that I’m deeply grateful for is that my first introduction into being a professional within academic spaces was one that I entered into also in relationship with my activist community.

[00:12:09] And so I was brought in in a way where I was from the very beginning treated as if I mattered and I had something valuable to contribute but also that it was a community effort. And that it was not responsible to the academy and the academic institution that everything we did was responsible to each other, but also more broadly back out and into the community.

So my first teaching job was at Ryerson in Disability studies but I think particular it needs to be noted that it was in a course that was team taught. And that was history of Madness and some of the central reasons for developing the course in this way was so that you kind of worked with your team um, to support each other, to highlight each other’s strengths, to uh … really be there with one another in uh, not in competition which is unusual for academia, but instead as, uh, really as a team. And even just the other week, cause the team changes over the years. I’ve taught in that course I think for 8 years now, and the team always changes because it’s precarious labour and so people are kind of moving in and on and through these jobs for various reasons.

And I met with, in the last two weeks I’ve met with two different iterations of the team. One uh, set of colleagues who no longer work with me and one who do currently work with me, and it’s just so um, I’m always so in awe of how much care is centralized within that classroom practice. And I have seen that in other spaces cultivated, uh, in which people are really working hard to do academia differently. Um, to not be following um, kind of expectations of what the institution wants of us. And instead, to really in genuine ways bring our ethics of organizing um, into the institution which is a way to kind of disrupt and unsettle things. And it becomes very clear that it’s disruptive and unsettling, particularly because I’ve always worked in academic spaces that are progressive departments.

[00:15:00] I’m in Disability studies, I have worked in other departments that are progressive and I don’t experience these levels of kind of, um, justice oriented uh, approaches to work, or care oriented approaches in those progressive spaces. It actually isn’t happening uh, as much as you would hope or think. And so yeah. I’m not sure if that answers the question, I can’t even remember exactly what the question is but I think it was around like, how have I brought that humanness into my teaching and it was, I was mentored in that way. I was mentored to treat people with um, with that ethics of care. But also um, with the uh, the values that I take up within the organizing and activist work that I do. And I wouldn’t be, I won’t stay in the academic institution if I can’t continue that. Which is like, that’s a scary thing to say when I’m still a person who’s in a precarious labour situation. Like I’m, I’m kind of back and forth. I’m always on contract. So I just finished what’s known as a limited term faculty which is the least precarious I’ve been because it was one year of full-time employment at a salary that I’ve never seen before in my life. But that was only one year. And based on kind of the difficulty of finding work in general in this time, but also the pandemic and also the competitive nature of finding academic work, I’m back to not even fulltime work. You know?

So it’s a scary thing to um, to … to speak to these experiences and those values out loud when I’m still precarious, when I’m still worrying and wondering how I’m going to pay my bills. Or if I’m going to get a contract next semester or … or how that kind of all, all, all plays out.

KB: I think it’s, I think it’s … the word brave is like, can be overdrawn but I think it sounds to me like you’re drawing from that mentorship that’s been given to you and you’re really like, um, putting your critical theory and your material practice, you’re walking the talk it sounds like. That’s probably so, so valuable for your students and your colleagues. Maybe you want to talk about more specifically about how you do marry your critical theory and your material practice? And those parts of your worlds?

[00:18:05] JR: Um .. sure, I mean I don’t know if I was prepared to be thinking how that, how … how that happens and questions like those sometimes can be hard for me to answer in that my practice often is like um, sometimes seemingly so disparate in that it feels often as if I’m pulling together areas um, or types of practice that not everybody understands as fitting together. So I’m always having to explain my practice before I can even talk about how my practice takes shape or how I might marry that critical theory with the practice.

But again, I think the way it happens, whether we’re thinking about the way that kind of my artistic practice happens or um, if I’m teaching in the classroom or if I am writing academic papers or if I’m organizing uh, within movement action, is that everything I have always done has always started from what I’ve learned from this like survivor community. So I really materialized, and branching out from that, I think it’s important to talk about like the psych survivor community and/or movement knowledge necessarily has to bridge to movement knowledge, other movements and other things that I’m learning as I work alongside. Um, uh, and you know, various intersecting movements. Movements are not every completely separate, because we all have you know, intersecting identities that have us take up space in multiple movements. But then they also have distinct histories, so how do I materialize my critical theory into practice? Is that in fact I don’t value um, kind of critical theory academic knowledge in the way that other academics do. I am not … I am, I am just not – that’s why I think, that’s why I refer to myself as a reluctant academic because I remember preparing for my comprehensive exams and, which is a, which is a thing that happens with most PhD’s. And sometimes you get the ability to set your own reading list and one of my comprehensive exams was on critical theory. And I kept asking like, like – how do you know where to set these parameters on what I’m, when I’m reading? Like what is necessary to go on here and how do I determine that?

[00:21:00] And one of my um, uh … not committee members, faculty within my department said, well, you just know. You have to start with the canon, you have to make sure you incorporate the canon and then you then develop. And then their answer got more fulsome from there, but in my head I was always like but who sets the canon? Like who determines the parameters around a canon is what’s understood as who is central, uh, to that theory, that, the people or the writing or the pieces that you can’t ignore? And I just couldn’t take that answer. I didn’t understand how we could agree in any sense that there even is a canon to start from.

But I was very fortunate in my PhD that my supervisor Rachel Gorman very much celebrated, supported and again mentored this type of thinking in which the Canon is socially constructed, and highly problematic and I both think that um, being uh … that reading theory, that being engaged in critical thought, that knowing the histories, even knowing the histories of canon can be helpful to know why and how they get set as canons. Knowing who’s referencing what. That all matters, but also we can ask why is this critical theory and why can’t I pull in other stuff.

So I think I’ve often approached me, I approach all the work. I start from the point of kind of in who’s interest and determined by who and why, and to what impact.

KB: Whos’ work right now, academic or not at all, is inspiring you or …?

JR: Oh damn. I hate this question. [Laughter] I will, I’ll answer it but I hate this question. Because I’m, I’m very much um … I don’t hold knowledge in a way where I rhyme off things that are … like I’m constantly moving. And so I don’t hold onto things in that it’s like, this is … I don’t like to pick favorites, I don’t like to make these decisions.

KB: You don’t have to!

JR: I do very much want to say that I think that I’m so um, in awe and inspired by artists right now in particular, artists who are critically engaging in where we’re at in this time and moment of conversations of abolition becoming central within all spaces.

[00:24:12] Like in really accessible spaces, meaning when I say accessible I mean um, I’m using that very loosely. I mean, in popular culture, in places where folks who are not in academia can take it up. In places where folks who don’t consider themselves as political which is not a thing, we’re all political, but um, I’m very inspired by artists, I’m inspired by activists and organizers who have been doing this work, um, forever. And who are getting um, the, who are kind of continuing these dialogues in full force. That’s what’s inspiring me right now and that’s who’s inspiring me.

So I’m thinking of organizers within Black Lives Matter. I’m thinking of the conversations that are happening between um, uh … organizers within, uh, Black Liberation movements and Indigenous resurgence and sovereignty movements and communities. I’m thinking about what is happening kind of … yeah … but I’m, I’m most inspired right now by creative folks.

KM: And what’s happening right now in the social movements were seeing, especially in abolition movements calls to defund the police, BLM becoming prevalent and visible in every aspect of society. Um, what can those of us who maybe don’t have a huge knowledge of Mad people’s histories and Mad movements, what can we learn from the histories of Mad Movements that have been doing this work to ensure this work we’re doing now becomes sustainable?

JR: Yeah, so I was thinking about this the other day. And I was thinking about how the first time that I had conversations about for instance, alternatives to police intervention in Mad people’s lives, happened almost within – I could almost say for certain within the first couple of months of me engaging with the psych survivor community in that I was in a time in my life where i was experiencing significant and prolonged crisis and distress in which the way that I was kind of experiencing the world and the way the world was experiencing me, was that I was constantly seen as um, in a state of perhaps danger.

[00:27:02] That I might be a danger to myself or people didn’t know what to do with what’s going on with me. And once of the – or I’m sure multiple folks in the community – had very clear and distinct conversations with me about how to pre-plan to avoid police involvement. But we want to think broader than that, it was also about how to avoid hospital stays. So how to avoid being formed and being held in the hospital against, um, against um, my kind of wishes. It was about how to avoid social work involvement. Um, and it – just kind of like the medicalized responses to Madness.

And so developing very clearly and distinct alternatives was central in the organizing that we were doing because it was around thinking about kind of the movements’ deep knowledge around what happens when there is um, uh, medicalized intervention and/or institutionalized intervention in Mad people’s lives. But when I was thinking about this conversation that I had with various community members I was also deeply aware of what made it possible for me to put that in place. So what type of privileges I had in my life where people trusted me in times to say, when I go into crisis, when I start to become detached from reality or I start to appear more agitated or more violent or any of these concerning type behaviours that people ascribe to Mad people, here’s what I want you to do and I had folks around me who would trust that that was um, a reasonable alternative. That had the privilege to be able to show up and support me, so they had time and resources to be there. That I wasn’t in situations where my crisis and distress was being kind of responded to by, by kind of larger public um, and just the very nature of being white um, being a woman, coming from a middle class family, all of these things meant that both my Madness was read very differently, the level of threat was read very differently, and my ability to kind of um, develop my own kind of care circle was possible in different ways.

So, I think over the years what the psych survivor community does and has taught us is that we’ve learned that we have to build our formal and informal kind of networks of care differently.

[00:30:10] We have always known, even with privilege, that medicalized or institutionalized intervention always is uh, reduces our agency and autonomy, has varying degrees of violence and when you are um, kind of more privileged there’s less violence but there still is threat and possibility of violence. And the violence is uh, is often lethal depending on your position in the world. So if you are Black and Indigenous, it’s well known that there is a high-likeliness that the violence can turn lethal. So it’s, so things that we’ve learned and things that I’ve learned from organizing but also from personal experiences is that what we need in this world, not just to survive but to flourish, is things like housing. We need things that are peer-led and I think it’s really important to mention that peer-led initiatives are not the stuff that we know now. The stuff we know now is actually neo-liberal, it appropriated within the systems, exploitative of labour and gives no power to Mad folks or Mad community. The peer led stuff that’s started decades ago, um, and you can read the work of Jijian Voronka to look at some of these histories, is it was political.

It was about um, peer-responses was about creating these alternatives when mental health workers thought that it was dangerous for us to even have community with each other. They didn’t want us to talk to each other outside of our day programs or our hospitalized programs and Mad people were like fuck this shit. Like, our lives – we need each other. We need to be together. And so it’s like we needed peer-led staff, we needed jobs, we needed to be part of community, we needed art and we needed art and cultural things that were not therapeutic. Like, we needed art that was about creating, uh, like we needed art that provoked change in the world, not that provoked change in us.

KB: Wow.

JR: Like largely we have learned over time that what we want is non-medicalized responses. And there are places that you can see this happening specifically as shaped through Mad movements organizing, but again we have to be connecting this more broadly to how this interacts with and/or hasn’t been responsive to cross-movement organizing.

[00:33:22] Which you could look to places like Working for Change which is a social enterprise and has things like Parkdale Green Thumb, Out of this World Café, Raging Spoon, Voices from the Street. We have the examples of the Gorstein Centre. We have Sound Times. Uh, there’s historical example of Mental Patients Association, we could also think about the role of the empowerment council and what it has offered us or cultural things like Asylum Magazine or the Psychiatric Survivor Archives of Toronto.

And there’s things cultural things, like Friendly Spike Theatre that existed. And then there have been over the years so many um, incredible working groups that have addressed issues that were talking about now, and, and the Mad community has been organizing for decades. So working group that I was a part of a little bit was the psychiatric uh, disability anti-violence coalition. Um, and uh, they did a lot of great work. The work that I was involved with was kind of um, looking at this experience of lethal violence, um, and in particular looking at coroners’ inquests at the time of the death of Edmond Yu to 2013 which was when uh, the death of Sammy Yatim happened. And I think that it’s so important to be aware of these distinct, um, examples and moments within psych survivor or Mad movement, like history and organizing because uh, I was reading over some of my, my research notes the other night in prep for our conversation. And the, the, the themes or the … uh, issues … or the policy suggestions or the ideas for reforming police that were present within the coroner’s inquests, man … it was. It was so uh, disheartening to read because it, like … it just, it reminded me that things haven’t changed based on requests for reform.

[00:36:07] Or requests for giving more resources to institutions like police. And so what it does teach me is that the Mad movement along with um, along with and alongside other movement organizing, specifically centering Black and Indigenous um, and Trans movement organizing is that defunding uh, disarming, dismantling and abolishing the police is a thing that uh, is very clearly the next step. Resourcing our communities, this um … this very intentional move to resource communities, to provide people with things not just basic living but things that we need to flourish in society.

These are things that we have known, we have needed. Like you can re- you can read it in policy documents, you can read it in suggestions from inquests. You can read it um, in the various initiatives that have taken place in our communities. And so, I think that’s what we learn from the movement is that we haven’t come to this time of abolition quickly. We haven’t come to this time of abolition with no um, practical or theoretical knowledge. And we have come to this time of abolition um, very … uh … distinctly because it’s a matter of life and death.

KB: That’s right.

KM: Mmhmm.

Wow.

Um, one thing that I did want to talk to you a little bit about today is your art practice, and specifically kind of like your role as a community artist and how kind of that work is contributing to change in our society, uh, that you mentioned, I’m going to quote you form what you just said of needing art to promote change in society, not art that changes us.

So could you talk a little bit about your art practice and how it promotes needed changes in society?

JR: Yeah, for sure. So I think my art practice takes shape in multiple ways. There are types of art, all of my art is textile based or fibre based. So I work with like cloth and I work with um, but I work in, in different styles and I work for different purposes. So some of my work is, um, what I refer to is kind of activist aesthetics or related within movement organizing. And I see that as the work that I do like with the large installations of banners for various activations, um, in movements or the creation of bandannas.

[00:39:12] Or exploring making patches, the types of things … the things that we have seen within movements or in um, in our actions forever. Right? Um, but that is art. And I also do art that is uh, deeply – that’s very public art – but I also do art that’s deeply tied to what I understand as a sight of organizing that often gets overlooked which are those private spaces, um, that Mad and Disabled folks often take up.

So, I do a lot of quilting, um, and I work in a very slow process to um, in which I work with natural dyes. So I dye fabrics using, um, natural resources, or materials and um, it’s … it’s this thing in which those practices seem as if they are in contradiction with one another, or that they juxtapose against each other as opposites. But I see them as being married together. I think art practices help us to think creatively about what type of change we want, how we want change and how we get there. And so for me, um, thinking through private and public, large scale and not very um, fast and intense and hyper-productive practices versus very slow, very slow and, and not super um … like, uh, like hyper-productive. What I see in that is that it helps us to learn about kind of like the sustainability of movement organizing and the ways that we need all of us.

So the ways that we need all of our skillsets and all of our ways of existing in the world, because the, the art that is very public and very quick um, with its impact is generally the type of activism that we value more. Because it’s, because we see it more. we see it, we can kind of name and spot the impact of it. And then we overlook the ways in which those of us who are showing up in our bed, those of us who are spending hours writing letters, doing research, pulling together resources, reading, writing critical pieces, um … making sure that food is made for people. Making sure that somebody has, that people within the community have emotional support.

[00:42:14] All of this activism matters and the art I make kind of engages with pulling that together and seeing it as being in conversation and not in conflict with one another.

KB: Hm. Yeah. How do you think we might culturally invite some space or move that needle a little bit for folks who are less familiar with this slow way of working and creating? Um, to begin to value that more?

JR: Yeah so I think that an important thing to um, consider as we’re thinking through how do we um, uh, make sustainable movements but also how do we um, uh … effect change, is that we keep in mind, um, that uh … that our movements require us to be in relation with one another. That our movements require us to be constantly in this both reflective and also active state. And that action um, requires that we are doing things but that doesn’t require a particular pace of doing things. So I think there is this idea that um, because I am a person who um spends a lot of time in bed. And there are moments in which I can hyper-produce. For instance the public banners that I make, uh, they often will happen – I will get a request for a banner – and within three to five days I will have made these massive scale banners that will take me like almost, sometimes, 20 hour days. Like I’m working at this intensive state.

But then I might spend weeks in bed after that. And it’s very, um, because our society in general is very passive in how we engage in things, I think that we are led … we’re not invited to believe that if we are slow, slow meaning uh, like I’m referring to myself as slow, like being in bed, working at slow paces. Um, processing slowly, thinking slowly, needing space and time. Um, I think because society though is passive, that then has us off on our own, not developing kind of the community relations that could pull us into work even in those slow spaces.

[00:45:10] And not thinking about how we get involved. So, if you are slow, how do you think about what you can do in your slowness? If you need to be alone when you are doing your activism, what then can you contribute? If you have kind of um, like I think that it is about not … it’s about repositioning or rethinking our understanding of what it means to be involved, engaged, and active. Involved, engaged, and active means that in fact, we need to be working towards change. But we don’t have to think about work as being this productive, neo-liberal thing. And, and I think that’s an important piece is that uh, all of our skillsets really are necessary but that can’t put us in a place where we are being passive and inactive.

KB: Hm.

KM: Amazing. We are getting towards the end of our conversation, so I kind of want to ask, like the final two questions that we like to kind of wrap up our episodes with that can allow our listeners, our transcript readers to dream alongside of us and have vision alongside of us, you talked about how getting involved, engaged and active are what we need to do to work towards change.

What is your dream, or your vision, for the world? What are the changes that you desire to be seen for future?

JR: Yeah! You know, I think that … I kind of have a dual answer to that in that it’s not entirely my space to be at the centre of dreaming of what a new future looks like. That I have, um, deeply learned over the years is that de-centralizing, kind of my visions for the future is an important thing to think through, um, because I hold a lot of power in this world. And people who uh, my ancestors, people who have existed in the world with the, with the power that I do, have not, have not built up futures that are viable. Have not built up times that are viable.

What I think that I dream for is this um, really valuing of, um, reciprocal um, sustainable communities.

[00:48:12] That we are really dismantling systems and institutions that are, uh, only serving the powerful elite. Uh, I want to see a future where we are um, where we are ready for the change now. But that we’re willing to be humble enough to know where our place in that change is, and how we might be a part of um bringing about that change.

KB: Yeah. And, in that process of bringing about that change and of course, that can involve you know, struggle and giving up power and passing the mic in various ways, but we – we are wondering, and we’ve been asking our guests, what Crip, disability, mad joy looks like for you. Especially when we embrace the messiness and slowness that you’ve been talking about here.

JR: Yeah. I guess for me that joy looks uh, I have spent a great deal of my life being um, very kind of filled with rage at injustice. And for a long time, I was really uh, punished for that rage. I was punished by psychiatrists, I was punished by just kind of societal expectations. I was um, uh … rage was not an acceptable um, way of being. And then, I came into a time where that rage was accepted. And in a way where it was understood that our anger at injustice can provoke a movement. But, a place that I’ve come to after kind of making sense of knowing that it is ok to be full of rage at injustice is that my joy is coming from knowing that where I really want to be is in a space of love. In a space of community, in a space that is um, about continually having a reciprocal process of showing up for each other, in very meaningful ways. And I have witnessed this and been able to uh, hopefully provide this for those around me

[00:51:07] But it’s also a beautiful thing to learn how to receive love. And to learn how to really try to honour the rage but not … but not stay in that rage really try to centralize um, the, the … the space for love and for moving forth with that love.

Which is it’s weird, it’s a very – I think it’s a huge turning point for me, I often like to talk about my Grandma who raised, she was the one person who did raise me to honour my fiery side. She is a very fiery person herself, and I’ve always loved this kind of uh, ability to feel that kind of movement of, uh, through anger. But I’m, I’m really present to wanting to build and to receive and to also centre love.

Cause it feels joyful! And I think we need that in these times. We really, really need that.

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview we release new episodes every Monday wherever good podcasts can be found.

[00:52:50]

Shannon Finnegan

Crip Times Episode 8: The Shannon Finnegan Episode

Have you ever thought of alt-text as poetry? What about lounging as a form of protest? This week, Kayla and Kristina are joined by Shannon Finnegan, a multidisciplinary artist making work about accessibility and disability culture. The conversation begins with Shannon sharing the importance of centering other disabled artists and thinkers in their work, and how interdependence can be an aesthetic approach.

“I’d rather be sitting. Sit if you agree.”

We speak about the presence (or absence) of alt text in institutions and our personal practices, with a focus on Shannon’s “Alt Text as Poetry” project, how embracing their own access needs for the first time led to prioritizing the disability experience in their work, and how the work of access is everyone’s responsibility. We speak about disability art as a rejection of hostile architecture, through some of Shannon’s activist artwork: “Anti Stairs Club Lounge.”

We move into how rest, care, and humour show up both in our process and practice. We end our conversation with a desire for more spaces for crip communities to form, and as always, we spoke about JOY!

CRIP TIME’S FAVOURITE QUOTES:

“The idea of interdependence as like a material in the work which feels exciting to me to like – or as a kind of aesthetic approach.”

“Comes from this experience that I had growing up which was that I felt isolated from other disabled people.”

“And it was really when I started to read the work of other Disabled writers and thinkers and start to look at art by other Disabled people that I really had this huge shift in my understanding of myself.”

“I mean I think when I first started making work about disability, I was in such deep denial about my own access needs that I wasn’t really even thinking about access.”

“Especially that a lot of times alt text or image description is unattributed. So it’s not even clear who wrote the description. And so having more transparency or clarity around like who wrote it and that could be you know, five people, in the process.”

“And, and a sense of like oh well now online yeah, more people are online so there’s kind of a different emphasis on online spaces again where I feel like online spaces have been so important for lots of disabled people for a long time.”

“A lot of my work is also playful or uses humour, like, I think for me the humour in those pieces is just that it’s so obvious and people are already kind of saying that with their bodies in museums. If you tune into it I’ll go to museums and see that the benches are very full. So just making that even more explicit, um, that that’s something that yeah … is like free to access.”

“So the lounge became a space that was exclusively for people who were staying on the ground floor.”

“We kind of lounged in protest.”

“And through my research what I was hearing is that it was curators who were often the barrier to seating in galleries, that curators sometimes have a vision for what an exhibition is supposed to look like and there are these site lines and they’re supposed to be this vista and benches or seating interrupt that. Um, which is  pointed out, it’s a really wild layering of ableism of like this kind of hyper-prioritization of vision than kind of like pushing out these opportunities for rest.”

“I have a pragmatism to my approach which is like what’s kind of within reach when I, and when I think about the kind of long-term things that I want, um, yeah. There’s, they’re so expansive and so entrenched in capitalism and white supremacy and ableism, you know, all of these, all of these deeply intertwined systems.”

“I really love the experience of, the experiences of connection I’ve had with other disabled people. Whether that’s through being present together in physical space, in digital space and also like the type of connection that comes through having a shared experience or like um, yeah. Witnessing something together in some way, or asynchronously in terms of time.”

“Yeah and I really hope that that doesn’t go away. That the option for remote participation like stays in place even when um, in person participation is possible and that they’re, that remains like a valued form of participation and not um, kind of secondary to in person experiences.”

ADDITIONAL LINKS:

FULL TRANSCRIPT:

Narrator: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Kayla Besse [KB]: Hello, and welcome to the eighth episode of Crip Times.

Yousef Kadoura [YK]: Today on Crip Times we will be listening to Shannon Finnegan, a multi-disciplinary artist who is working with in the disability arts sector. With your hosts, Kayla and Kristina.

KB: OK. Everyone, thanks for tuning into this week’s episode of Crip Times. This is Kayla speaking, I am joined by my co-host Kristina McMullin and today we have the lovely Shannon Finnigan on our show. Shannon, thanks for being here.

Shannon Finnegan [SF]:  Thank you for having me, I’m thrilled to be here.

KB: We’re thrilled to have you. And for any folks who don’t know would you like to give a little intro about yourself?

SF:  Yeah. Um, I am an artist. Um, my background is in drawing and print making but now I’ve really am all over the place in terms of um, mediums and materials and um, I sometimes make objects. I sometimes sew my drawings, sometimes events um … and a lot of my work is about my – or – I would say is rooted in my lived experience with a physical disability um, and I’m really excited about, or interested in the idea of disability culture. Um, and what is kind of like um, shared among different disability communities. Um, and also thinking a lot about accessibility um, as a kind of material in the work. Which is something that I feel like I’ve learned kind of from my, from a community of disabled artists that um, I feel connected to and learn from.

Um, yeah. And I live in Brooklyn New York but right now I’m in York Maine, I’m doing a residency at Surf Point foundation for the next three weeks, so I have the pleasure of looking at the window at the ocean as we record.

KB: So jealous! That’s beautiful. Yeah, my, my next question was gonna be like how are you right now, what’s up right now um, in this moment for you, if you wanna kind of ground us in where you’re at?

SF:  I just, I just spent a week kind of off.

[00:03:02] Kind of taking a break from work and from email and had some time um, at a cabin in a forested area so I’m feeling pretty energized right now. I hadn’t really stepped away form kind of work and my computer in a while. And that felt really good to just kind of, um, pause and now come back to different projects. Um, and yeah, in a new place. So I just arrived yesterday so I’m sort of still uh, getting familiar with this new spot and kind of like figuring out what the next three weeks might um, feel like.

KB: that’s great and hopefully it’s a break from the Zoom fatigue and the constant online world that we all have been thrust into in these pandemic times.

SF:  We’ll see, yah. I feel like I have a lot of Zooms scheduled and I don’t know, I think – I haven’t been feeling the Zoom fatigue as much. I don’t have to do like hours and hours on end, like I know so many people do especially teachers and things like that. But we’ll see. Yeah. I, I feel like the next three weeks are kind of like very um, freeform and open ended. But hopefully restful.

KB: I am so excited to talk about your work. I know that when we spoke earlier you said that your work is only possible because of the work of other disabled artists and thinkers and you’re trying to build these networks so that your work isn’t only understood in isolation. Um, so I wonder if you wanted to talk a little bit about that before getting into specifics?

SF:  Yeah. I think I’ve had this experience um, with a number of different projects where I’m operating in a space that is dominated by ableism or ableist thinking. Um, where disabled people are maybe present but not heard or not comfortable. Um, and that people are excited about my work, but they don’t necessarily understand that I’m one of you know, hundreds, thousands of millions of people who are thinking about these things and have been. Um, over the past like decades, hundreds of years, millennia.

Um, and so I think that’s been something – I think that really saturates my experience, that feeling of connectedness and it’s always kind of jarring to me when I operate in spaces where people are kind of like oh, kind of like … kind of plucking me out of that network in a way that um, yeah.

[00:06:13] It doesn’t feel good. And so I have been thinking about um, how to really – how to clarify those connection within the work itself, rather than relying on kind of my statements or writing around the work. Um, and I think also just coming out of my excitement about what a lot of my peers are doing and, and wanting to also like tell people about that, or point to that. Or …. Um … so yeah. I think and it’s interesting, I heard Alice Shepherd talk about this on Contra podcast about the idea of interdependence as like a material in the work which um, feels exciting to me to like – or as a kind of aesthetic approach, um, and so that’s something that I’ve been yeah. Just kind of like sitting with and thinking about how to um, build into my, my practice more.

Kristina McMullin [KM]: Something that I find about your work is that the aesthetic of it is intentionally and unapologetically Crip. And it’s intentionally and unapologetically built for a Crip audience. Has that intentionality and unapologetic-ness been integral to your art practice forever or was it something that you grew into?

SF:  I think it’s something I grew into. I mean for me that is … comes from this experience that I had growing up which was that I felt isolated from other disabled people. I was often um, the only disabled kid in my schools. Um, and then I was looking at mainstream media, which was you know, had all of these kinds of harmful narratives around disability and um, for a long time I was really in this like kind of minimizing approach to my disability where I just wanna, I felt embarrassed, I felt ashamed. I was trying to be as mainstream as possible. And it was really when I started to read the work of other Disabled writers and thinkers and start to look at art by other Disabled people that I really had this huge shift in my understanding of myself. And the sense of like … wow, I really wasn’t learning about um, about myself from these kind of more mainstream sources.

[00:09:00] That that was really happening from yeah, other disabled people. And so that was part of the motivation for me in terms of centering disabled people in the audience is that I had felt the power of being centered in the audience for something. And the way that there can be this kind of like mirroring or reflecting where it’s like something that I had kind of sensed or felt but hadn’t crystalized or um, I hadn’t kind of connected different things and how powerful that can be.

Um, and so that was a big part of what led me to be like that’s who I want to be speaking to. I want to be speaking to other um, other Disabled people.

And I think also just because of um, and … the, the scarcity of spaces and experiences where Disabled people are centred, um, that it feels exciting to do that and, and to um, yeah. To kind of have this um, vibrancy that maybe people who don’t feel they have lived experience in disability are able to see but more of, or experience, but more of a kind of like outside looking in feeling rather than um, being at the centre.

KB: Hm. Was your introduction and your discovery of disability arts and culture like a slow burn or did you, do you recall like an aha moment where there was somebody’s work or several people’s work that you were like … “yes!”

SF:  I was trying to do independent research, so I was starting to piece together different people who were making work about disability. But through a friend I met, um, the artist and activist and educator um, Madison Zalopani. And then Madison, um, invited me to a DANT meeting, Disability Arts NYC meeting. So there was this organizing happening in New York City, led by Similar Linton and Kevin Gotkin. So that was this … I think of that as this link into disability community for me, where I connected with Madison and then Madison kind of like looped me into all these other things that are happening. Or were happening and continue to happen.

KM: And then when it comes to this kind of change into really centering, uh, disabled audiences, Crip audience, has that changed your artistic practice? Like the process that you couldn’t do creating this work?

SF:  Yeah, very much so. I mean I think when I first started making work about disability, I was in such deep denial about my own access needs that I wasn’t really even thinking about access.

[00:12:12] I was so much in this framework of it is what it is and I’ll make it work that I wasn’t really connected to the idea of access. Um, and it was really through starting to think about okay, who do I want to be able to experience my work and thinking about um, disability community that I was like … and just the lack of accessibility in a lot of existing art spaces, especially more DIY or kind of emerging artist spaces. Um, and really realizing like oh, if I want my work to be experienced by other disabled people, then I need to be kind of involved in access. And that was really where I was like oh … there’s a really big, there’s a lot that I don’t know about um, other folks access needs and even my own access needs. It was also this process for me of being like, what actually um, supports my participation in a space, or um, an experience and what have I felt like I couldn’t ask for that, that I do need? Or I do want?

And so that was um, a big part of the, the shift that happened for me and now it’s like I see access like, you know, literally everywhere. It’s like so much a part of everything I’m doing and the fabric of my everyday life it’s almost hard to imagine how … what a different mindset I was in before. But um, yeah.

KB: Yeah you really can’t turn that off once you start looking for access or lack of it, hey?

Um, Kristina and I in our day jobs both work in communication roles. And so I think I can speak for both of us and say that we are both huge fans of uh, one of your projects, Alt Text as Poetry. Stunning. Um, would you like to talk about that for a bit and tell our listeners or readers, um, what that’s all about?

SF:  Yeah, so Alt Text and Poetry is a long-term collaborative project. It’s a project I do with another, um, disabled artist and um activist and administrator, Bojana Coklyat. And … it was definitely connected to, for me, from kind of my side of it it was connected to the experience that I was having around really um, examining the ways that I was making work.

[00:15:00] and the limitations of that. I come from a visually oriented arts training. And so yeah, I was really interested in like why I was working visually, whether to not that was important to me and then also um, thinking about when I’m working visually how to be proactive about making that accessible and build that into the project. And I was also thinking about online spaces and how um, important those have been for me as kind of like points of connection to disability community and arts community and thinking about how um, yeah, a platform like Instagram that there’s like, it’s kind of supposedly about photos but it’s really you know, it’s about events. It’s about connections around moments of everyday life. There’s all of the stuff happening there. Um, and yeah, I think um, Bojana and I share a lot of um, interest in thinking about access creatively and collaboratively and as something that is ongoing and evolving, rather than this kind of like compliance oriented mode that’s so common around checking a box.

Um, and yeah, so we’re kind of looking around at existing alt text guidelines and uh, really noticing that that compliance model was really present. Like it was, it felt to me like um, well maybe I’ll back up first and just explain what Alt Text is in case folks are unfamiliar. Um, so alt text is um, a type of image description. So it’s uh, basically a written description of an image posted online, um, and um alt text is imbedded in the um, like, code of a website. So it’s not visually present on a website, but someone who’s using a screen reader who is having the text on a screen read aloud to them, the screen reader on a website might start with a title and read the first paragraph of text and when the screen reader gets to an image, it can’t read an image so it knows to access this piece of information associated with the image, which is called the Alt Text.

So basically it’s like a form of accessing visual information non-visually online.

Um, and it’s very related to image description which is more general term. It’s related to audio description, which is description in the context of live performance or film or video. Um, so – or – verbal description, like a verbal description touring a museum is related practices.

[00:18:08] So yeah, when we’re looking at existing alt text guidelines it felt like a lot of the guidelines were like if the image is described, if the alt text exists, then it’s accessible. Like check the box. And I think for both Bojana and I, um, yeah, we were kind of like well what about the quality of the alt text? Like what about, um, yeah, what are the details of that? And especially both coming from arts backgrounds and thinking about artworks which are often fairly complex images and um, seen and interpreted differently by different people that we wanted to kind of explore that more.

Um, Bojana has a little bit of a different perspective. She is a screen reader user so she has more of a day to day kind of experience with alt text. Um, and also … but similar to me is also kind of worked, been thinking about access more broadly. Um, yeah. And I think we, we kind of went in with a lot of questions and just kind of came out with more questions around how to go about describing images. And for us the project is really not about us kind of like coming in and being like okay, so these are the guidelines, this is how you do it. But instead trying to um, give people uh, well put Alt Text on people’s radar if they don’t know about it already and then get them thinking about it and practicing. Um, and we’ve been interested in this idea of poetry um, because it felt like there was a lot of kind of existing thinking in the world of poetry that was related to alt text writing. Um, and so we really wanted to kind of like draw from that. Or use poetry as a framework to get people thinking about the language they’re using, the tone, the voice. Um … trying out some more experimental things. Um … yeah, and so the project, the form of the project has kind of like taken a lot of different shapes. We originally developed a workshop curriculum, so it was an introduction to Alt text and Alt Text as Poetry. And then a series of four writing exercises that um, allow people to start practicing describing an image and talking about it.

And each of the exercises is oriented towards a specific question that has come up for us.

[00:21:01] So one is about um, kind of like subjectivity and audience. One is about length and priorities. Um … yea, the project is expanding and morphing and we are wrapping up a workbook. So it’s a self-guided version of the workshop that um, will exist in a number of different formats. Um, it will be available for free online as a Google Doc and Word Document and audiobook. And then um, there will also be a print version and um, some PDFs and we’re um, gonna have a Spanish Language translation um, also available as a word document and google doc.

Um, and then we are also working on a kind of part of the project called Alt Text Study Club which is a blog that is kind of like gathering uh, interesting examples of alt text and description. And kind of like commenting on them. Um, again as a way to kind of think about what it means to like learn together or to understand the variety of ways that um, an image description can be written. Um, rather than yeah, I think there’s a lot of kind of history of description that’s really oriented to objectivity and trying to be objective as a describer and this idea that there is uh, “right” description for an image. And so trying to uh … explore kind of like the pros and cons of different approaches and build a collective toolkit around how we might describe images.

KM: Fascinating. Kayla mentioned we both work in Communications in the Arts Sector and I was trained um, in image description actually by an audio describer who specialized in theatre works, live performances work. And it was so fascinating because nowhere in the training that I received spoke about who to talk about race. How to talk about gender. How to talk about disability.

And it was like oh, if you have an actor performing you wouldn’t describe what they look like unless it’s relevant to the script. And it’s like well … what is relevant? How can we say that race is not relevant, how can we say that gender is not relevant? How can we say that disability is not relevant? Um … when racism, cis-, heteronormativity, the patriarchy and ableism is so engrained in our society.

[00:24:00] You can’t just say It’s not important to the script. So it was a very interesting training, um, because you learned a lot but it also was this checkbox thing and at Tangled, our policy is really that we make our images descriptions collaborative. Because there’s no full way to … for us as creators, communicators, to give just one perspective in an image description, which makes the process longer, a little bit more arduous, which means we are a little bit less productive. I feel like things, like what you’re doing with Alt Text With Poetry is kind of creating a framework for all of us to explore this on our own.

SF:  Yeah, yeah. Exactly. I want to go back to something that you were talking about in terms of describing race, gender, disability status … age. You know. Um, other kind of body characteristic. I think something that I’ve been thinking about recently, partially because of the conversation that I heard um, around a screening that Jordan Lord did with Caroline Lazardin, Constantine el Abestanos, I think people often focus around those kinds of identity topics when people are in the image. But actually like my positionality and identity as a describer, um, like my whiteness, my class, my disability – like that’s actually informing how I describe every image. It’s just not always so obvious. Um, and that yeah. This, this kind of um, history in um, audio description and image description to um, kind of like gloss over that feels uh, really harmful. And I think is a big – I think something that I’m really excited about is um, well – yeah, especially that a lot of times alt text or image description is unattributed. So it’s not even clear who wrote the description. And so having more transparency or clarity around like who wrote it and that could be you know, five people, in the process.

So like yeah, like, any guidelines that were used or something like that, trying to surface more information so that there’s less of an assumption of like, uh, oh right like we just did it in this way that everybody does it and more like well, ok, I have a specific training, I have a specific um, yeah. Positionality and that’s gonna be super present in the descriptions that I write. When I share that, that maybe allows someone who’s engaging with my descriptions to um, form some of their own judgments about when and how they wanna trust my description or what some of my biases might be.

[00:27:07] KB: When you do descriptive work where might you disclose your, those identity markers? Um, or where might you suggest that we disclose those types of things?

SF:  So I think it really depends on the scale of things. On my personal Instagram for example, like, I people probably would guess that I’m writing the descriptions and there’s information about who I am pretty readily available online. I think for like kind of smaller or mid-sized, um, organizations or groups, like having a place on a website or something like that that kind of talks about access practices. I think there’s the possibility of also signing a description within an Instagram um, caption. And also using for example, like first person language, that then allows for more … to say things like, I’m not sure but I think it’s a beaver but you know, it could be a woodchuck or I looked it up later and I found it was something else. You know? That it can also, like, you can build some of the … some language into the description itself that acknowledges, um, that you as a person are writing it.

Um, and then I also think that there’s ways that it can be like, for example on a blog or like news site where it’s like, there’s a, there’s a writer associated, I’m interested in having the writer write the description. Like sometimes those are different people who are doing those roles, so like what does that mean or … yeah. I don’t know. I think definitely something that I’ve run up, that yeah, that comes up in a lot of the work that Bojana and I have done about this is that the structures that we’re working within are so flawed. And that yeah … I mean, on Twitter, I think this is changing but for a long time you had to go into your accessibility settings and turn on that you even wanted to write descriptions in order for the box to show up, and the way that it’s been implemented on Instagram, there’s um … Instagram and Facebook now there’s a like, AI that autogenerates a description for any image that doesn’t include alt text.

And for me that was a moment where those platforms could have liked surface that and said kind of said, this is the auto-generated description, do you want to edit this? Because they’re still quite limited. But instead I feel like the approach they took is very much like sweeping it under the rug.

[00:30:05] Like you don’t have to worry about writing a description because we have this AI that’s taking care of it, so like don’t worry about it. Yeah, and I think there’s still in terms of the infrastructure of the way things are built, I’ve seen a couple of sites that have space for multiple descriptions. The museum of contemporary art in Chicago is one, where it allows for multiple descriptions and descriptions of different lengths. So yeah. I mean, I think that’s um part of what I feel excited about is just like … there is, trying to figure out like what would be helpful. What are different ways we could approach this. Um, what are different structures or practices for um, how to surface information and um, without like well no, that’s kind of … that’s a separate thing. I think as a, I experienced this with a lot of sighted people new to alt text which is an over description or like a sense of like, trying to describe everything. And um, I think length is just a really tricky thing because I know a lot of screen reader users prefer kind of like a more concise alt text. But again, like, screen reader users are not a monolith. So depending on the type of image and the context, like different um, lengths for information might be helpful.

And so like um, yeah. There’s just a lot of, there’s a lot of moving pieces in terms of like what might be, what different people who are engaging with description want, what people who are writing, how they’re approaching it. Um, of how those edits overlap and collaborate.

KB: Totally, yeah. It’s so important to name that. And um, if people listening or reading don’t know, like I’m thinking of Instagram specifically, it doesn’t even give you the option to write your alt text when you are creating a post, right? You go in and you, you write your caption, you tag who’s there, you might tag the location and you have to go in and edit after it’s posted to even put that Alt Text in there. It’s super buried.

SF:  There is a way to do it in the flow of posting but it truly could not be more subtle. It’s like, there’s this tiny gray text that says advanced settings and click on that and go, again, it’s not built in a way that is promoting access at all. You know?

KB: Instagram, if you’re listening, right under the caption box!

KM: And so that the contrast is legible. It’s like, it makes the text not light grey on a white background. Just make it black text.

[00:33:08] One thing that you mentioned,  or you said is that structures are so flawed. One thing I’ve seen a lot in these pandemic times is larger arts institutions, larger art museums, um, kind of like promoting that they have like volunteers now working on image description now that work is going digital. And for me that like just seems so flawed, and could you kind of speak about a, your feelings on that, and, some ideas of how we counteract these notions of these larger structures using an inaccessible practice.

SF:  Yeah, I mean there’s a lot … there’s a lot there. I think certainly like we’re seeing some of the lack of prioritization of alt text, um, alt text has existed since the 90s. it’s really not new. Um, and lots of institutions I would say especially arts institutions have been very slow to um, consider describing images as part of their role. Um, I think so that’s something that I sense in this is kind of like, oh well now that we don’t have all these other things that we’re asking people to do we’ll now, um, work on alt text.

And, and a sense of like oh well now online yeah, more people are online so there’s kind of a different emphasis on online spaces again where I feel like online spaces have been so important for lots of disabled people for a long time. And there’s this kind of like, um, renewed emphasis on that now that uh, that’s like a primary space of experience for non-disabled people. Um, and yeah. I think … like, I do really believe that like anyone can write an image description. Like I think sometimes people get kind of um, caught up in this idea of expertise or like that um, like I hear from a lot of people that are like I know about alt text but I don’t know how to do it so I don’t do it. And so I feel excited about like a variety of people being part of the writing process. I know that that’s also something they did at MCA Chicago when they were kind of doing, imitating their alt text on their website. They had these events called Donuts for Description where people from across the museum would gather and write alt text together.

[00:36:02] And so that feels exciting and collaborative and a way for people in different parts of the institution to collaborate. I think um, for me it’s also like the guidelines and directives are so important and so if people are like, if there’s kind of a, um, mass turn towards writing alt text like what does that mean for like how people are being trained in that and what they’re being told is a quote unquote good description.

And I think actually, something that I’ve been realizing is that I’m .. I mean, I think there’s sometimes kind of like at some of these larger institutions that have huge image collections, tens of thousands of not more image, maybe there’s a baseline of description that needs to happen across the board. But I’m also interested in a more project based description mode of like oh, for this artist and exhibition we’re gonna have uh, these people do the description and we’ll take this approach. And for this project … something that is more responsible to the type of image and the context. And so I think that’s another thing that comes up for me when I hear about these largescale description projects, I’m like what’s lost when we have a one size fits all approach to describing every image in a collection or something like that?

And in terms of how we intervene in that, [sighs] … you know, a big question. I think something that I personally have been doing is um, as an artist I’m often in a position where I’m being asked for images of my work and usually those images travel with some caption info. Um, like a photographer credit, title, medium, material sometimes. And so I have been including an image description when I send an image. When I’m feeling like I have more agency in the situation, or have more energy to invest, I will ask you know, what is your alt text practice and try to get into that with people. As a kind of like … uh, backup plan. Like I just include the image description in the caption. It’s not always best for screen reader users to just have it in the caption rather than embedded in the alt text, but it also works for some people who use description who don’t use screen readers. So there’s pros and cons to that.

[00:39:01] But yeah, I’ve been interested in the power that artists potentially have in their relationships with institutions around access. And the ways that organizations or institutions are sometimes more responsive to requests from artists than even from like their own educators or access workers. Um, and I think also when I send the description uh, that’s maybe a starting point you know? Like I’m always open to someone responding to that and being like oh hey, like actually I’m interested in like xyz description. And like you didn’t talk about this, which feels important in this image. Cause I’ve also heard from a lot of um, people who use alt text and image descriptions that they’re a little skeptical of artist generated descriptions because um, yeah. As artist we are attuned with the intent of our image making and not necessarily like the impact that it might have or like … yeah. So I don’t know. I think that’s something that I’ve and kind of like fits with a lot of thinking that I have which is like I think of access as everyone’s responsibility. So it’s um, it’s like … there’s part of that responsibility rests with me as an artist, part of it rests with the curator, with the um, you know, graphic designer, with the, you know. All of these different roles and ideally all of those people should be knowledgeable and invest in access and be like collaborating and building on that work together.

KB: Right, not making it like the one disabled employee’s job to do that or the one screen reader user’s job within the organization to do all of that work.

SF:  Totally. Yeah, and I think a lot of times artists – yeah – like, well artists are often very under resourced. And also it’s not always feasible to take on access work because yeah, we’re not being compensated for it because our own access needs aren’t being met, because we don’t have knowledge or training. I think it’s not … I don’t wanna like push that labour onto artists, but I think um, it’s interesting for me to think of artists as kind of part of the um, team I guess that’s like working on making an art work or an exhibition or experience accessible.

KB: Hm. Yea. Absolutely.

Um, and if we could switch gears for a second. Speaking of hostile structures and inaccessible structures we both know where I’m going with this. Um, I am obsessed with your anti-stairs lounge club work.

[00:42:00] Um you know we might have a lot of Canadian listeners who might not be so familiar with what the heck is the Vessel, why do we hate it? [Laughter] So if you’d like to talk about that?

SF:  Yeah so anti-stairs club lounge is like, there’s been two versions of the project. It was initially created for um, an inaccessible exhibition space. It’s the Gallery at a place called Wassaic project and they have a seven floor exhibition space with no ramp or elevator access above the Ground floor. And they do this big group exhibition every summer that has like fifty to seventy artists. Um, and I was yeah, just thinking about like what it means to engage with an inaccessible space like that. And you know, was thinking about like oh, could I require my work is shown on the ground floor. What are the options I have. And ended up making an installation was the first iteration of the Anti-Stairs Club Lounge that was an enclosed space on the ground floor. And had places to rest, had chilled seltzer, there was some candy, reading materials.

And it was behind a locked door and in order to get access you signed in at the front desk saying you wouldn’t be going up the stairs in the exhibition space. So the lounge became a space that was exclusively for people who were staying on the ground floor.

And so that was the initial iteration and it was up for two years there. Um, and then I started to hear these murmurs in New York City about this new structure that was being planned called the Vessel. It was designed by Thomas Heatherwick and it’s a building scale outdoor sculpture. And it’s I think 156 interconnected stairways, so it’s basically this basket like um, structure of stairways and interconnected stairways. All stairs. I think it’s 2500 stairs. Um, and um, I think I like a lot of people felt really angry about it. Um I think part of my anger was that you know, a lot of times I hear oh, it can’t be accessible because it’s a historic or existing structure or oh, it can’t be accessible because there isn’t a budget. And this was um, a – it’s kind of a new development. So it’s an area that was previously a railyard. So there was a lot of flexibility about what could happen there.

And there was a 200 million dollar production budget. So it was a, um, yeah – just this huge, huge project.

[00:45:06] And um, yeah. And there was an elevator that was part of the initial design. It’s a little bit confusing because it’s not, it doesn’t work like a traditional building where it’s like you would take an elevator up and move around on the level because it’s stairs up and down at every level. So the, the um, I think the elevator accesses three of the eighty platforms. And most of the time when they were running it, it was only, they were bypassing two levels. So it was only accessing one of eighty platforms which is about 1% of the structure.

And so yeah, I wanted to do something that kind of brought Anti-Stairs Lounge to the Vessel to protest that space and say, um, yeah. This is horrible. And so I gathered a group of about fifty, um, people, some disabled and non-disabled. And we kind of lounged in protest. We … there were, well one of the considerations is that the area around it is called a privately own public space. It’s a specific designation in NYC that is different than a park. The person who owns that space, or company, has full control over the rules of what happens there. And so I wanted to design the lounge in a way that was hard to point to as not allowed and also like easy to like pack up if we were asked to leave.

So instead of building a lounge structure we wore these bright orange beanies with a crossed out stairs symbol. Instead of signs I made these newspapers that had an article that Kevin Gotkin wrote about the Vessel inside, but when someone is reading it the exterior part of it functions as signage that says Anti-Stairs Cub Lounge. I used some existing seating there but brought extra cushions and snacks. Um, and yeah, and similar to the other version of it, there was like … in order to be in the lounge, participants signed a document that said um, as long as I live I will not go up a single step of the vessel.

KB: That’s amazing. I really suggest listeners or readers google that if you’re interested, I know there are photos right from that event?

SF:  Yeah and the photos on my website have descriptions’.

KM: We’ll link those in the show notes for those of you reading the transcript or want it in the show notes.

KB: So when you talk about lounging as a form of protest, which I love, um, I know that rest is built into your work in other ways.

[00:48:15] And I think people are really interested in concepts of rest right now in this pandemic, maybe folks who hadn’t thought about rest publicly before. Do you want to talk a bit more about how rest shows up in your life?

SF:  Yeah. I think um, I started noticing how different my body felt if I was even able to pause and sit down. Like standing and walking for long periods is … is really draining for me. And I have a chance to sit, um, yeah. It can really like change my pain levels for the day and it can be a really different experience for me. And so I started to be hyper aware of seating options as I was kind of moving around New York City. And that’s where my interest in rest kind of started, was like kind of in … being able to physically pause. And just noticing the scarcity of seating, um, and places to rest.

And yeah, I think there’s a lot of people who are doing really interesting work, um, about this. I love the, the work of the Nap Ministry, highly recommend following them on Instagram or on Twitter. And also I’m thinking about some of the writing of Johanna Hedva about rest and protest, their recent essay about kind of like talking about the type of protest that happens when everyone stops or everyone is in bed.

But yeah, I think I um, I … yeah, and also thinking about my own relationship to protest and different forms of protest and feeling like um, marches and like kind of long periods of standing are not super accessible to me and that a lot of times protests are really oriented around those things. When there’s also such a rich history of sit-ins and kind of like other forms of protests. And so thinking about yeah, like, what does it mean to protest and also um, care for our body-minds and um, yeah. I think – and, so a big part of that, the work I’ve done around that is making benches.

[00:51:00] So I … so yeah, I was doing all this research about why there weren’t more benches in art spaces. And um, cause I – and part of me that was having this feeling, like a lot of access is really complex and long term. But like more benches in a gallery feels like we could have that like tomorrow.

KB: Yeah, like we could do that.

SF:  Yeah. And through my research what I was hearing is that it was curators who were often the barrier to seating in galleries, that curators sometimes have a vision for what an exhibition is supposed to look like and there are these site lines and they’re supposed to be this vista and benches or seating interrupt that. Um, which is  pointed out, it’s a really wild layering of ableism of like this kind of hyper-prioritization of vision than kind of like pushing out these opportunities for rest.

So I was like oh but if I make the seating the art work, that’s a way that we can get more seating. And so I’ve been making these benches that have text on them, the first ones I made said this exhibition of ask me to stand me for too long, sit if you agree. Another one just said I’d rather be sitting, sit if you agree. Some of the newer ones said uh, it was hard to get here. Rest if you agree. Here to lounge. Lounge if you agree.

[Laughter]

And yeah, I, I think just … I mean a lot of my work is also playful or uses humour, like, I think for me the humour in those pieces is just that it’s so obvious and people are already kind of saying that with their bodies in museums. If you tune into it I’ll go to museums and see that the benches are very full. So just making that even more explicit, um, that that’s something that yeah … is like free to access.

And the title of that series is um, “Do you want us here or not?” Again, kind of like thinking about the ways that there’s often this rhetoric around welcoming or inclusion or um, wanting disabled people to be in a space but then even this like super, super baseline um, form of access is not happening.

KM: Yeah I had a chance to sit on “I’d rather be sitting, sit if you agree” at the Flex Factory in New York in the summer of 2019. And I was trying to live in the moment and I didn’t take a picture and it’s burned in my brain of like I wish that I had just handed my phone to someone and asked them to take a photo instead of trying to be like this holier than thou, live in the moment.

[Laughter]

But you know, live and you learn.

KB: That would have had an amazing image description.

[00:54:00] KM: So good.

SF:  It’s funny because the benches almost encouraged that in some way. The text is covered up when you’re sitting on it. Once you’re in it you have the rest and relaxation. Um, though I’ve done some versions where the text is like a pattern on a cushion and it repeats in a different way, but.

KM: Yeah, so we are coming to the end of our time. I feel like I garnered so much knowledge form you and inspiration to bring in to my own practice to ensure folks who are listening or reading the transcript can say the same. I will say a massive thank you and then we’re going to round up with two questions that we ask all of our guests, so thank you for your time.

Um, and our second to last question is what is your vision, your hope, your desire for an art world of the future?

SF:  That’s a hard question. There’s a lot. I think, I think part of what is hard for me about the question is I think I spend a lot of time living in the realm of like … um, kind of achievable goals. There’s like, I have a pragmatism to my approach which is like what’s kind of within reach when I, and when I think about the kind of long-term things that I want, um, yeah. There’s, they’re so expansive and so entrenched in capitalism and white supremacy and ableism, you know, all of these, all of these deeply intertwined systems. Um, but yeah. I mean I think I would really love, I think for me, I really love the experience of, the experiences of connection I’ve had with other disabled people. Whether that’s through being present together in physical space, in digital space and also like the type of connection that comes through having a shared experience or like um, yeah. Witnessing something together in some way, or asynchronously in terms of time.

And so I would love for there to be more of that, I’ve been in spaces where I’ve had that and it’s felt so transformative and also just made me want it some more. I’m thinking of the, the um … performance festival in New York, “I want to be with you everywhere.” Which was this amazing four days of that type of connection. Um, and yeah. Was like so thrilling and also made me desire so much more of it.

[00:57:00] KB: Yeah, no I can’t wait until we can gather again um, in person but you know you were saying when we talked before, seeing what’s possible now in terms of what’s offered remotely is unreal. Because disabled folks have been asking for this forever, and you know, only now it’s like … we’re wanted here because everybody has to live in these ways.

SF:  Yeah and I really hope that that doesn’t go away. That the option for remote participation like stays in place even when um, in person participation is possible and that they’re, that remains like a valued form of participation and not um, kind of secondary to in person experiences.

KM: Amazing. And then our very last question um, the world is very difficult to walk through right now with all of the experiences we’re sharing, all the information we are getting inundated with eery single day that is always negative. Um, what has brought you joy recently?

SF:  I love jigsaw puzzles.

KB: Yes!

SF:  I’ve always loved jigsaw puzzles but I really like just … well my apartment in New York is pretty small and I’ve figured out with foam core boards I can set up a good temporary puzzling situation on the floor. Um, and I’ve been buying like used vintage puzzles and there’s some fun imagery and um, yeah. I think like having a hobby or activity where I’m like um, can do with my partner and um, or sometimes I’ll puzzle remotely with a friend. Like we’ll both et the same puzzle and do it together in different places, has just been like yeah. Just a nice thing to have in my home space since I’ve been home so much.

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview we release new episodes every Monday wherever good podcasts can be found.

[Podcast endSF:  01:00:04]

Crip Times Episode 7: The Gloria C. Swain Episode

Welcome back to Crip Times! We hope you were able to find some moments of rest over the few weeks since you last heard from us.

This week, Yousef and Kristina talk to Gloria Swain about making art as an older, Mad, Black, female artist and activist, the barriers in society and the sector. Gloria speaks about how her art and curatorial practices are part of the healing process for her. We talk about dancing as an integral part of art and healing processes (we love Gloria’s dancing on her Instagram page!)

“I’m creating my own legacy. So, when I’m gone my art’s still gonna be here.”

We speak about Gloria’s artistic legacy, changes we want to see in the future of the Candian art sector, and how we may go about making those changes. Gloria speaks about how the support she’s received in the art sector has impacted her practice. We wrap up this episode speaking about what Gloria is working on right now, how you can find her, and Gloria shares some words of wisdom we can all find peace in.

CRIP TIME’S FAVOURITE QUOTES: 

“As an older Black woman living with chronic illness, illnesses, and being part of a group who is at a higher risk for COVID-19, uh, this pandemic brings to light and confirms for me personally how Madness is produced by my own experiences of isolation, exclusion, poverty, ageism, and the ongoing impact of intergenerational trauma.”  

“I still create because creating art is part of my healing process. Um … as, it was never an issue, uh, as far as like say isolation. Um, or creating work because of isolation. I’ve always created work because of, um, I guess it’s a healing process for me. It’s a, it’s a healing journey.”

“I’m just, that’s one thing that I hope continues. I’m hoping it’s not like, just something to get the media off their backs, I hope they’re serious about improving. There’s a lot of improvement that needs to be done.”

“I’m tired. But I’m still gonna create my art. I’ve always created my art for me, and it’s often how people like, acknowledge it and appreciate it, but I don’t do art just to show people.”

“There’s also the name calling and the very difficult bossy, difficult to work with, angry Black woman rather than saying oh she’s passionate about her work.”

“Let me just say I don’t know if I can say this word, but there’s a lot of fuckery happening in Toronto in these art spaces. I’m tired of it, so.”

“I’m creating my own legacy. So, when I’m gone my art’s still gonna be here.”

“I do what I want, I just do what I want to do. I have a vision and I go for it.”

“Cause a lot of people, that are going through a trauma, they need to feel like they have a place. They need to feel that they’re included. They need to feel that they matter, that they’re important. Uh, that what they’re going through is not overlooked. So, for me being included, uh, being surrounded by people who care about you, people who create spaces for you, is healing. In other words, knowing that somebody cares about you is part of, good, part of the healing process.” 

“Holding space allows someone to heal and feel relevant. Um, wherein taking space is like showing up and reclaiming space and place where you’re normally not welcome. Or you’re normally not invited.”

“Giving space is about sharing space and making artists feel like they belong in that space.”

“I think to see the artist in different emotions, it says to the audience that ‘ok, this person went through or is going through something. And created this piece.’ And I hope that, I hope my work empowers other people to find creative outlets for what they’re going through.”

“Well, music to me is like art. It’s – it’s – good for you. It’s healing.”

“I guess … traumatizing. Hurtful to see that this generation is experiencing the same thing that I experienced. Which is the same thing that my parents experienced. And I’m just hoping that my work brings all of these stories to light and hopefully there can be like some type of solution.”

“I don’t dream about art I create art.” 

“I do have a vision for the future of Canadian art. Um, I would like to see older Black female Mad artists, artists with disabilities included as part of that landscape. We shouldn’t have to fight for space. We shouldn’t have – you know – the struggle to get into spaces. We should be proud to stand up and tell our stories when we’re ready to tell ‘em.”

“That’s my future for, that’s my thoughts for the future. A better art world, an inclusive art world, a non-judgmental art world.”

“It brought me joy to just be lifted up by other Black women.”

“I’m hoping that people … how do I word this … um, share their, share their stories. Their experience. I want people to feel safe talking about their experience.”

“I know when I talk about my mental health and my art and how art is healing, and how mental health is political, I know I get a lot of responses like, do you feel exposed? It’s like no. I feel in control because I’m telling my story. We have to tell our own story.” 

“I’m hoping that the world is, people are more acceptant of those that are different from them. I’m hoping that people stop judging other people for – we all have a past – accept people for who they are not where they come from, or not what they did before. It’s all about uh, accepting each other. And not judging each other.” 

FULL TRANSCRIPT 

 [Podcast begins: 00:00:00]

Narrator: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Yousef Kadoura [YK]: Hello and welcome to the seventh episode of Crip Times. 

Kayla Besse [KB]: Today on Crip Times we are joined by Gloria Swain, an interdisciplinary Black, Femme artist and activist with your hosts, and my friends Yousef and Kristina. 

[Jazz music continues]

YK: And hello Gloria, thank you so much for joining us on our podcast today. Um, welcome! Welcome, welcome to Crip Times. It’s a pleasure to have you here. 

Gloria Swain [GS]: Well thank you, it’s a pleasure to be here! In isolation.  [Laughter]

YK: I mean, really there isn’t a better place to be right now.

Kristina McMullin [KM]: In isolation together!

YK: Collective isolation, yes.

GS: I like that.

YK: Uh, yeah, so it’s so great to have you here, Gloria. For our audience could you maybe uh, give a little bit of an introduction as to who you are and what you do?

GS: OK. Uh, my name is Gloria C. Swain. I’m a Black feminist artist, activist, researcher, senior’s rights and mental health advocate. Uh, and disability writer. Uh, I work with installations, abstract geometric paintings, performance art, and black and white photography. Uh, my art practice challenges systematic oppression against Black women and Trans folks. To explore and connect and to bring awareness to how our past traumas of slavery and overall colonial violence against Black mental health.

KM: Wow. So, basically you’re a brilliant human uh, creating work amongst a less than brilliant world. And given that we are in the midst of the Covid-19 uh, pandemic, are you able to share uh, with us how your art making practice has been impacted by Covid-19 um, in this time?

GS: This will probably be my longest response, because yes. Yeah. First let me say as an older Black woman living with chronic illness, illnesses, and being part of a group who is at a higher risk for Covid-19, uh, this pandemic brings to light and confirms for me personally how Madness is produced by my own experiences of isolation, exclusion, poverty, ageism, and the ongoing impact of intergenerational trauma.

[00:03:17] Looking at how COVID-19 has impacted my art practice, um, I have to say not a lot has changed within my work. I still create because creating art is part of my healing process. Um … as, it was never an issue, uh, as far as like say isolation. Um, or creating work because of isolation. I’ve always created work because of, um, I guess it’s a healing process for me. It’s a, it’s a healing journey. So, as for as the Covid impact to my art practice, it’s not a lot. Um, it’s not a lot of changes. I think my biggest challenge is the financial – being hit financially – because of cancelled shows, the lack of funding, which means that I’m unable to purchase art supplies. So that impacts my mental health also because I use art as a way to deal with my depression. Uh, but I have sort of found ways to um, deal with it. So would you like me to talk with the ways I’m dealing with it?

YK: Certainly.

KM: That would be amazing, yes.

GS: In reference to not being able to purchase art supplies because of the lack of funding, I recently put a call out on social media. Uh, and I did receive like a huge response from certain organizations like Glad Day Bookstore, Black Lives Matter Toronto, Trinity Store Video and the Nia Centre for Arts and a few of my Instagram friends delivered arts supplies for me. So, that’s keeping me busy. 

Um … and all the ways that I’m dealing with it is I’m limiting my time on social media. Because of the anxiety and stress that I get from being on it so much, uh, looking at the violence with Black bodies, I’m looking at how the pandemic is affecting people who look like me, my age, mainly Black women who live in poverty. So, and for me this is not new. This is something, I have six decades of dealing with these issues so I had to step back for a while. 

Um … I’ve created like my own little art space in my bedroom. Uh, let’s see, what else have I done … I’ve scheduled, I try to schedule time, self-care time.

[00:06:01] Because you, I’m stuck here so I don’t have the option of going out. Um … I miss that freedom. So I’ve created a space in my room to create art. And I, but I do have time to like do a lot of work that I didn’t have time to do, like I, I’m documenting my artwork. I have over 80 paintings that I’m doing an inventory. Uh … I try to stay connected to my grandchildren, but they don’t like facetime so that’s an issue! [Laughs]

Um, and I find myself, I go out every morning at like 5 am just for a walk. Just to get some air. I try to avoid the people because no one wears masks, and they don’t practice like the social distancing. And I’m in that group that is high risk group for the, uh, for the uh – virus. 

YK: Yeah.

GS: So I think that’s it.

YK: Yeah, I’m sure it must be – I mean, speaking from like us having a similar-ish experience, it is frustrating to be you know, taking all the precautions to protect yourself and then see other people um, in your community not doing the same um, when it is a group effort. Um, but with all those things kind of being said those difficulties um, that your, and changes that you’re experiencing um, during the pandemic, what would – or rather – is there anything um, that is changed or shifted in the world um, due to COVID that you would like to see continue after it? 

GS: Uh … oh, I think a lot of community members are taking care of each other which is, I like that! I hopefully, hopefully this is not a one-time thing. Um … so, this might take me into the art spaces [laughs] where everyone’s talking, all the art places are uh, talking about their, showing support for Black Lives Matter. They’re showing support for people who are affected by the virus, um, I just hope that continues. I hope it’s not a one-time thing. 

YK: Mmhmm.

GS: Um … but it’s still a struggle, I feel like I’m doing ok. And I feel like so many people, especially older people and people with disabilities, I see them struggling. And that’s another reason I had to step back from social media. Because, it’s like you’ve seen people in pain and you can’t do anything. So it affects your mental health.

[00:09:00] So I had to step back. So …

KM: Mmhmm.

Um, you mentioned quite a few times in this about community. How are you finding that you’re building community and maintaining community if you are reducing your time on social media?

GS: I’ve never really had a community. It’s like I’m known in different communities but I’ve never really been a part of a community wherein we come together and I don’t … for me to get that support, um, is not – it has a lot to do with age, also. Most other people that I grew up with I did things with, are no longer around. Or they just stepped out, they just fell off the earth. So, I’m so used to doing things on my own and being by myself. So I don’t – there’s not a big change for me. 

KM: Mhmm. And you just mentioned uh, doing a lot of things on your own. And I wanted to talk about how that has informed uh, you as a working artist. You’ve been a working artist in Toronto and across Canada – 

GS: A long time!

KM: Many years! I’m wondering if you can, yeah, it’s – I was wondering if maybe you could speak to some of the barriers that you’ve faced in the art sector in Canada. Uh, specifically relating to your identity as a uh, older Black female, Mad, artist who is unapologetically making art about your, your life and your experience.

GS: OK, um … let me say I’ve – okay. Um I’m pretty much known in Toronto most of the art spaces. Uh, but there are still spaces where I am not welcome. Uh … there are still spaces where I’m dismissed as an artist because of who I am, or what I am. And um, let me just say there are lot several spaces, I don’t call any names, but I’ve like, years I’ve been like doing proposals, I’ve been there, they know my work. Um, and then I see on social media where they’re supporting uh, Black Lives Matter, Violence against Black Bodies, they … and these are spaces that don’t have Black employees. They have maybe one or two Black artists once a year. So, it is – it’s like a joke, so it’s – I’m just, that’s one thing that I hope continues. I’m hoping it’s not like, just something to get the media off their backs, I hope they’re serious about improving. There’s a lot improvement that needs to be done.

[00:12:00] But as far as my presence, I don’t really see myself in any of these art spaces. Like I said I’ve tried to get in so many times like, at some point you’ve gotta just say meh, that’s it. I’m done. 

Um … even with the funding. After four years of submitting grants, uh, applications – last year was the first time I ever got a grant. Uh … so it’s like, it was like pulling teeth. Like I’ve been doing this work for so long and I just, you know, I’m not – uh – I’m not, uh, irrelevant in the art world. So, um, it’s just like uh, most of – I think – rejections based on how I look. And, and most certainly the work that I do. Um … it’s just a wakeup call for me, put it that way. It’s a wake up call. It’s like – I’m tired. But I’m still gonna create my art. I’ve always created my art for me, and it’s often how people like, acknowledge it and appreciate it, but I don’t do art just to show people. Because it’s – you get disappointed. Um, and there’s also the name calling and the very difficult bossy, difficult to work with, angry Black woman rather than saying oh she’s passionate about her work. 

Um … let me just say I don’t know if I can say this word, but there’s a lot of fuckery happening in Toronto in these art spaces. I’m tired of it, so.

Yeah.

KM: Yeah.

YK: Yeah. Well, with all of that, and like you know, the tiredness that comes with those experiences, coupled with you know your existence as uh, incredibly talented artist and person with a lot of life experience, how have those things shaped what is now your curatorial practice?

GS: I do art, I do my work, for me. It’s like – it’s like – I’m creating my own legacy. So, when I’m gone my art’s still gonna be here. So, it’s like I don’t conform to what a lot of these mainstream art spaces expect from an older Black woman as an abstract artist. They always ask, do you do Black art? My response is I’m Black, I’m an artist, this is my art, this is Black art. So I don’t fit in any of these little boxes. I don’t know if that answers your question, sorry!

YK: It provides, I mean it provides some really deep insight into the work that you do. Certainly. But perhaps to rephrase the question, what is the difference in your practice as a curator versus an artist? When you’re curating work, um, by other artists what are you look for? Do you look for something that more sort of mirrors yourself?

[00:15:18] Or are you looking for um, experiences that … or are you looking for something else entirely? 

GS: Uh because I am an older artist, and there’s not a lot of older Black artists that I’ve met who lack at it in a generational art frame of mind. So I look for, I try to find artists who maybe travelling the same journey that I’ve travelled but may not have reached a – haven’t had the same experience that I have. Because it’s like, each and everyone has a story and you can always link something together to like create a show. So, I try to find artists um, who I guess um, are well into the work with my vision. And who have a vision similar to that that we can put together and collaborate. 

KM: And then to borrow from your language which I think sums up a lot of things very beautifully, um, how does your curatorial practice reject the fuckery that exists in the Toronto art world?

GS: I do what I want, I just do what I want to do. I have a vision and I go for it. 

KM: Amazing. And then as someone who was able to an audience member and be a community member or other audience members of your curatorial debut back in, early 2020, Hidden, there was a really powerful written piece that you wrote and was entitled “Holding Space.” And that really spoke to artists who were not present at the exhibition, uh, due to all the negative forces in our society, racism, ableism, sanism. And can you speak, first a little bit about the choices that you made to include a written piece uh, to acknowledge ‘holding space.’

GS: I would say, because as an artist with disabilities, and a Black artist, a female artist, I’m always – I’m used to being excluded. I know that um, my work is not valued by a lot of uh, places. And we are just so easily replaced. So what I want the, the message I want to give is hold a space meant that people with disabilities who are, that they’re not … they’re not replaceable. They’re irreplaceable and that their work is important.

[00:18:09] That they mater and that Holding Space indicates that there is no judgment. It shows compassion and supports what they’re going through when people have a difficult time. 

Um, and I wanted to be like a healing process. 

KM: Mm! Can you speak maybe a little bit more about uh, this healing process? That’s shown up in your practice?

GS: Sorry, what do you mean?

KM: Well you spoke about how holding space can be a healing process, and I’m wondering if you could talk about maybe some other ways in which your art practice or curatorial practice um, is healing?

GS: I think it’s cause it’s inclusive. Cause a lot of people, that are going through a trauma, they need to feel like they have a place. They need to feel that they’re included. They need to feel that they matter, that they’re important. Uh, that what they’re going through is not overlooked. So, for me being included, uh, being surrounded by people who care about you, people who create spaces for you, is healing. In other words, knowing that somebody cares about you is part of, good, part of the healing process.

YK: Absolutely. Um, so this concept of holding space is it different um, or rather how is it different from um, taking or you know, giving space? Like what’s the … yeah, how’s that sort of work out?

GS: OK. Well, for me in my opinion, holding space allows someone to heal and feel relevant. Um, wherein taking space is like showing up and reclaiming space and place where you’re normally not welcome. Or you’re normally not invited. It’s like guerilla art, you just go in and be seen and be heard.

Um, and then you go back to – for me – a giving space is about sharing space and making artists feel like they belong in that space. Uh, so anytime I do get space I like to bring in artists who don’t normally get space, who aren’t normally included in different communities. And I include that in my art practice, um … because I think everyone needs an opportunity to show their work, to be a part of the work. 

YK: Those are all important things to make sure the community I guess is fully emersed in, by having the community fully emersed in the work or the event of something, it takes you know … it just widens and opens up so many more opportunities for everyone else by doing that.

[00:21:10] GS: It invites different community members into the space, so. It’s not just about the artists, it’s about the audience also.

YK: Yeah.

GS: I like to create spaces where people come in and they feel welcome. They feel like they belong there. So for me, that’s what art is. That’s why I like to have a piece where people can touch. You go into a lot of these – you can’t touch, there’s signs: don’t touch, don’t touch.

KM: That’s a really great thing that you just brought up about art as uh, being a place to feel welcome and feel a belonging. Um, in addition to having tactile artwork, what are some other things that you’ve brought into your art practice that you believe make people feel welcome and that they belong when they interact with your work?

GS: I think photographs. I think seeing the artist, I don’t like a lot of Black art photographs. I think to see the artist in different emotions, it says to the audience that ‘ok, this person went through or is going through something. And created this piece.’ And I hope that, I hope my work empowers other people to find creative outlets for what they’re going through. 

Oh yes, and I like to uh, throw in a little uh, music to help people dance. [Laughs]

` Oh yeah.

GS: I like that. 

I know when, we had the um, one group came for Hidden and I think they were from the Toronto uh, some school. But they enjoyed the art, but then I turned on the music and we just started to dance! 

YK: Yeah, I can attest. I’m not a, I’m not a huge dancer myself. I like to say I have two left feet, but um, when, whenever I’ve been in a room and you start you know, dancing or putting on music you have such joy in it you kind of make it contagious for everyone else.

GS: Well, music to me is like art. It’s – it’s – good for you. It’s healing. I know I had posted something on Facebook about uh, I talk about my mental health a lot. And, uh, I got a response from this, another Black woman, saying that when I talked about my mental health she’s like, ‘well, you don’t look like you say you feel because you’re always dancing.’ And I was like, ‘excuse me? [Laughs] I’m like – dancing is part of the healing for me. So.’

KM: So, I’m going to start talking about some hopefully healing questions.

[00:24:05] Um, and I think um, you mentioned earlier in this conversation um, that you are creating your own legacy by creating this art work. Are there words or feelings or emotions, like, what do you believe to be the strongest and most powerful Gloria C. Swain legacy? How do you want your legacy to be remembered by us?

GS: I want my story to be remembered because my art is broken up into my history. My present. 

KM: Mm.

GS: And how I want to be remembered. So, I think – in my performances – I talk about my ancestors. That’s uh, and how their lives affect my life today which is lived intergenerational trauma. And I want people to look at the future, how do we uh, make life better for the next generation? And like – I have like six decades of what’s happening in the world today. So I like, I’ve been fighting this for six decades and it’s very um, I guess … traumatizing. Hurtful to see that this generation is experiencing the same thing that I experienced. Which is the same thing that my parents experienced. And I’m just hoping that my work brings all of these stories to light and hopefully there can be like some type of solution. Because we can’t depend on the man at the top, the government, to like do anything. It’s up to the community, community members to like change the way things are. 

So I just hope my, my art makes uh, change – makes changes. 

KM: And, I mean, I will say as someone who has worked with you as an artist and curator and had been an audience member to your artwork, it’s definitely – it has definitely changed me, um, and changed my perspective of how I see the world and specifically see the art world. But also just for me, I feel like your work has been a catalyst for me to more um, lay the ground of what I believe to be a true truth in myself of how I want to operate in the world. Um, so I mean … thank you for your work and it is so intentional and I believe it does illicit this type of response that you want it to illicit. 

Um … I was also wondering if you could speak a little bit about your dreams for future. In your dream, what does the landscape of the Canadian art sector look like?

GS: Ah, okay! I got a good response for that one.

[00:27:13] In my dreams. I wrote, I don’t dream about art I create art. Um, and [inaudible], I have insomnia. So there’s my superpower. But I do have a vision for the future of Canadian art. Um, I would like to see older Black female Mad artists, artists with disabilities included as part of that landscape. We shouldn’t have to fight for space. We shouldn’t have – you know – the struggle to get into spaces. We should be proud to stand up and tell our stories when we’re ready to tell ‘em. 

Um … and I think, my history in art, mainstream art Canadian galleries, not only seeking young artists but also older artists. I’m hoping funding forces, not – will not only favour young artists – will also equally fund other artists who look like me. I’m hoping that awards, like you don’t see anyone over forty receiving art awards. Because um, the application has a age cut-off. We need to get rid of the age cut off.

YK: Yeah.

KM: Hm.

GS: And I’m hoping that art spaces include intergenerational practice as part of art making. What I mean by that, the transfer and sharing of general knowledge and skills invites different um, creatives into the space. And it brings in different um, community members. Um … and I, I just noticed that the, um, art galleries and museums in the space are now opening up to older Black artists. So I’m hoping that Canada follows suit, uh, and then my – another thing I’m looking at – artists who have um, made a name for themselves in the industry. And if they would just reach back and pull up other artists. We can’t really just depend on the art galleries, funding art organizations to bring us in. it’s up to us as established artists to bring in artists who aren’t established yet. That’s my future for, that’s my thoughts for the future. A better art world, an inclusive art world, a non-judgmental art world. 

YK: I would like to be a part of that art world. Take me with you.

GS: Thank you. Right? Where you’re looking at the art, not you. Oh another thing, a lot of these funding organizations, they have like the peers who approve the art funding applications. So say if you’re in a group or a community, you go out and like – you’re going to find your friend.

[00:30:13] So I think, I think that maybe these art organizations need to find like maybe people who aren’t within the art community. Maybe community members. Let them go over the funding applications. So you hear that Toronto Art Grant?

[Laughter]

YK: They’ll definitely hear it when the episode comes out, hopefully!

GS: No, but it took me four years to get one grant. Um, and there are other artists who have been applying for years because but because they’re not known or they’re not within a certain community or a group and they’re not gonna be, they’re not gonna get funding.

YK: Mmhmm. And you can’t only fund emerging artists as you’re saying. You have to make it available for the wider community because those emerging artists, even if they get those grants, they’re going to, they’re going to stop emerging at some point. But they still need support.

GS: It’s like, I’m still considering an emerging artist – when does it stop? So.

YK: Yeah! When does it stop? ‘When do I stop emerging?’ [Laughter]

KM: So in this pandemic time that we’re in, there’s a lot of monotony in the world and a lot of sadness. And we really want to have these conversations um, with our friends who we admire and respect, but we also do want to celebrate them. And so I wanted to ask you, what has brought you joy recently?

GS: To be honest, I don’t believe in joy. Um, cause – ah – I’m the type I guess, I’m the type that says the glass is half empty. Because I’ve been through, I’ve experienced things that were high but all of a sudden just crumbled down um, but I have to say that the last few years I’ve been blessed as an artist. But I’ve worked hard um, I shouldn’t have to work hard, work that hard, but I did. Um, and I was fortunate to like find like other Black people to support me. Uh, Karen Carter from BAND, the Black Artist Network. Alyce Feron from uh … Amanda Parris. It’s hard to find that support and I, that brought me joy to just be lifted up by other Black women. 

Oh, I just had a fifth grandchild. That’s joy.

YK: Oh, congratulations!

GS: Why thank you! Granny got it going on, boy!

[Laughter]

[00:33:15] And uh … [laughs] and I’m able to create art. Like I have over 80 paintings, even with the isolation like uh, uh … this isolation and dissociate identity is nothing new to me. I’ve always been alone, I’ve always found ways to create uh, when I’m alone. So … creating art brings me joy. I dance. I make – I dance – I make dance videos. [Laughs] So, just … enjoy life is like, um, but I know sometimes when I’m feeling down I take that time to like let my body and my mind rest. And a lot of people don’t have that opportunity, so for me I’m … there are blessings. So … 

KM: Amazing. And thank you for sharing that with us. Um, so now I get to basically have you talk about how our audience can find you. Um, so you could just … I know you had a Patreon, and an Instagram. Uh, and you can maybe give an overview on how our audience can find you and what they will uh, be engaging with if they want to engage with you on the internet?

GS: Ok, let me pull up my little phone here and find it. I should have wrote it down! Ah, for my like I said I’ve stepped away from a lot of social media platforms. But I do use Instagram for my um, to showcase my artwork. And it’s @gloria_swain_artist, uh, so I will be using that to showcase all of my art. Um … my patreon is gloriacswain. And I’m doing like, I’m doing – I want to create and online art gallery that I’m setting up in my bedroom to show my work because I don’t know how long this um, virus pandemic is going to keep the art galleries closed. So I’m trying to find other ways to get my art out there in the world. 

And I want to create an art book to, I want to – I’m doing an inventory of all my art pieces – and I want to write from each piece to my journey. 

KM: The art book sounds absolutely incredible! I would love nothing more than to have a Gloria Swain artbook in my home.

[00:36:10] I feel like this has been such a brilliant conversation and I’m really excited that I get to put it out into the universe, to the world, to hear. But I would also like to have it being ended, ah, Gloria with your words and your wisdom. So here is an audience, what would you like to say to our community, our listeners in the world?

GS: Mm, what do I want to say? Um … I want people to like uh, I’m hoping that people … how do I word this … um, share their, share their stories. Their experience. I want people to feel safe talking about their experience. I know when I talk about my mental health and my art and how art is healing, and how mental health is political, I know I get a lot of responses like, do you feel exposed? It’s like no. I feel in control because I’m telling my story. We have to tell our own story. 

I do mine through different um, creative outlets. But I’m hoping people listen to my story and feel the, and overtime feel it’s ok to tell their story. And not to be afraid to um, speak the truth. I’m hoping that the world is, people are more acceptant of those that are different from them. I’m hoping that people stop judging other people for – we all have a past – accept people for who they are not where they come from, or not what they did before. It’s all about uh, accepting each other. And not judging each other.

KM: Mmhmm.

GS: So.

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview we release new episodes every Monday wherever good podcasts can be found.

[Ends: 00:38:48]

Jess Watkin
A black and white photograph of Jess’s upper body, she rests one hand in front of her, the other holds their chin. The photo is centred on a bright pink background. ‘Jess Watkin’ is in bold green lettering, written on two lines of text. At the bottom of the images is the Crip Times Podcast Series logo on a lighter yellow background. The image evokes a vintage floppy disk.

Crip Times Episode 6: The Jess Watkin Episode

Happy solstice! They’re the four best friends anyone could have. On the last Crip Times episode of 2020, all three hosts (Kayla, Kristina, Yousef) are joined by Jess Watkin, an artist, activist, academic, dramaturg, and most importantly, friend of the pod. 

“It was interdependent magic. Like it really felt like magic.”

We spend some time laughing about how we all became friends through our various crip encounters, access intimacy, and what Jess’ work as an artist and disability dramaturg actually entails. Jess speaks about her upcoming projects, and the legacies of interdependence that brought her to the place she is today. This episode ends with Jess’ dreams for the future of performance, with suggestions we could all bring into our 2021 plans. 

We’ll be back with new episodes of Crip Times on January 11 until then, thank you for allowing us to share these episodes with you, they really feel like magic.

CRIP TIME’S FAVOURITE QUOTES: 

“People tend to do that, right, they’re like ‘I know someone else who is Disabled, maybe you should know them!’” 

“Only access intimacy and like boss ass bitch types could understand.”

“[Mia Mingus] defines access intimacy as that feeling of a quality when you meet somebody of them just getting what you might need and what they might need at the same time. And that you don’t necessarily need to explain every little detail, but they’ll just kind of get what you need in terms of access but also in terms of like complaining about Crip Stuff, which you know, the four of us all have been there and done that in terms of access and in terms of policy, and in terms of the arts. And so I feel like there’s this knowledge, this instantaneous knowledge of, like not just like what I need but that I might need something and that it’s totally cool and that we can figure it out together.”

“I think that’s a really cool part about being in Crip friendship, is this idea that you can just sit down with somebody and you don’t have to go then explain why you’re angry. They can just be like oh, yeah, you’re angry… It’s been a really interesting crash course of lived experience with all of this.”

“I find for me as a disability dramaturg, my job, my role as an advocate to remind her that, remind the performer and creator that you are also human.”

“It’s my role as a disability dramaturg to make sure that not only am I the outside eye for the audience but I’m the inside eye for the performers, and I have learned this from disability.” 

“I don’t want to say take care of them, because hair flip I’m so good, but it’s more about how they can focus on the work and I can focus on the structures and support structures around them so that they can do the work to the best of their ability at that time.”

“I also find that being disabled in these normative spaces is a disruption in itself. Especially when we don’t conform to the ways in which other people expect us to be, um, and being proud of that and confident is very difficult and I think that’s why as a disablist dramaturg that’s also my role.”

“It would be very great if we were creating brand new things and I’m very here for that. But it seems like in North America we’re not ready to revolutionize the theatre entirely.”

“It’s a part of disability justice to be obvious about it. That’s the big thing about anybody who ever asks me about, how do you make it successful? I’m like I don’t know, just say what you do and don’t have. Put that on the Facebook event, you know?”

“I always come back to like the Crip community. We can’t help but be diverse because you know, it’s not like you know, one group is going to be more Crip than the others. It’s, it’s a really, it’s like a random selection of people from all these different backgrounds and you being able to take that and acknowledge that there’s such a massive range of voices out there.”

“It was interdependent magic. Like it really felt like magic.”

“I’m extremely privileged and extremely grateful. But I also am like very knowledgeable that I worked really hard for this, and I always try to give back to this community. New artists, emerging artists, children – you know – children, people in school. Because I’m like it could make a huge difference just to be like, you belong here.”

“I have a dream that disabled people are not seen as disruptions in theatre spaces ever, meaning like … all of the chairs in the theatre are removable and all of the places in the theatre space, audience space are accessible for any mobility device user and any person.”

“I dream of a space that is decolonized in a way that feels … I don’t want to say natural but feels right to the people that that affects. I don’t want it to feel stagnant or weird when we talk about the land that we’re on and how we’re not invited there.”

“I want to continue and push for a challenge and also joy and enjoyment, because I think there’s like a balance between shit that likes deals with the hard stuff, and shit that makes you feel good.”

“There also is a fuck ton of joy here. And you know, I want to see joyful stories. I want to see celebration and pride and I think that it’s gonna, again, take a bit turn and a big movement past what we’re dealing with now. But I think there is so much capacity to demonstrate and perform joy that I’m hopeful.”

FULL TRANSCRIPT 

[Podcast begins: 00:00:00]

Narrator: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Kristina McMullan [KM]: Hi friends. Welcome to the sixth episode of Crip Times. On today’s episode of Crip Times, we have Jess Watkin. Jess is a Blind and Disabled scholar, living in Toronto. She’s a PhD candidate at the University of Toronto Centre for Drama, Theatre, and Performance Studies. Her research focuses on disabled artists and their creation processes, specifically in Canada. Jess is also an interdisciplinary artist, dramaturg, consultant, and educator. Jess Watkin is the type of person who makes every space she enters better. She is a true gift to her community, and we are excited to share her brilliance with you.

[Laughter] 

KM: Oh goodness.

Yousef Kadoura [YK]: We’re recording dot dot dot … loading the recording. We’re recording.

[Laughter]

Kayla Besse [KB]: Always gotta confirm.

KM: Let’s begin.

YK: Thank you Jess for popping into this. You are, I think we’ve already spoken about this, but we’re currently recording the very first session of Crip Times. Um, yeah, thank you for being here. Um, would you mind taking a moment to share with the audience a little bit about who you are?

Jessica Watkin [JW]: Yeah, so I use many names it seems like. Either Jess or Jessica but today I’ll refer to myself as Jess, because I think Yousef, and everyone knows me as Jess. So I’m Jess Watkin, I use she/her, they/them pronouns but all pronouns that are provided and used with respect and love are open and welcome to me.

I’m a white settler, female-presenting, female identifying human being. I am Blind and Disabled. And I identify as an artist-scholar at this point, because I feel like both of those things inform each other. So I’m currently doing my PhD at the Centre for Drama, Theatre, & Performance Studies at the University of Toronto.

I am starting my fifth year, that probably means nothing to a lot of people, but it means that I’ve been working on it for quite a long time. PhDs take time, especially if you can’t see! [Laughter] Also if you’re an artist on top of everything, so you know, about a year ago – two years ago – I spoke with my supervisor who helps me through my PhD, and I said you know, I had been taking a break from practice in terms as an artist.

[00:02:55] And had only been consulting predominantly and it wasn’t as fulfilling as I wanted it to be, in terms as a theatre and interdisciplinary artist. And so I spoke with my supervisor and was like, It might take me longer to finish, but I think my work will be better if I actually practice art while I do my research. And it has been. It’s so much more enjoyable because I also get to be extremely creative and then also I just found out I get to be creative in my dissertation as well. There’s gonna be a secret creative chapter, which is very exciting. So I’m really loving this balance of research and art right now. I feel like I’ve kind of – not retired – but I’ve taken a little bit of a break from being on stage myself, but I do spend a lot of time backstage and pre- in rehearsals and conversations with folks, particularly disabled folks right now, dramaturging their pieces and working on um, accessibility design. But if I am making art right now, I’m making a lot of tactile textured art. So I’m working a lot with materials, working with yarn, working a lot with like, scents. Um, but yeah, that’s kind of like what I’m working on in terms of art. 

With my research, it kind of all informs each other. I’m working on disabled artists in Canada and how they create performance. So a lot about dramaturgy, a lot about disability, and actually a lot about softness. Which is like my newest thing which I’m very excited about, care and softness and how there is strength in softness. And that kind of comes out both literally and metaphorically in my work when it comes to like, my rugs and my textiles. But also in my writing.

Yeah, that’s kind of – that’s me in a nutshell, I think. 

YK: That’s really fantastic. I love those new turns that your practice is taking.

Um, that’s cool. It makes me think back to um, when we first met which was what, 2017? At the Republic?

JW: We met in Montreal, man.

YK: Did we?

JW: We met in Montreal …

YK: Oh yeah! We met in my third, in yeah – 

JW: In that weird café, which was freezing cold, my phone died it was so cold. But we got to know each other better at the Republic.

YK: Yes. How did that happen again? Was it that I was introduced to you, or you were introduced to me?

JW: In Montreal?

YK: It was because we were disabled theatre people, that was the reason [laughter], but I forget who initiated it.

JW: People tend to do that, right, they’re like, I know someone else who is disabled, maybe you should know them! I think it was because I had two friends at NTS, the National Theatre School, who knew you like they know me. And then when I was coming to Montreal they were like, You should meet up with Yousef, he’s working on that other podcast that you were working on about disabled artists. And I was like, I mean, sounds great. And I think originally we were going to meet with a bunch of people but then someone broke their foot and other people were in like, practice for the shows.

[00:05:52] And so it ended up being you and I at a café and we were like, All right, let’s talk about it! And I think it was three months later, you know, completely differently we were in Ottawa for two weeks together just like … really getting a crash course, literally, in disability arts in Canada.

YK: Yeah.

KB: So if we’re talking about Crip friendship and how this came to be, this is Kayla speaking by the way, Jess and I were Twitter friends I believe before we had ever met in person for quite some time. And I don’t know if it was the first time we met in person, but the instance that stands out, is we were at a workshop with Hannah Thompson in Toronto. Across the table from one another. And we were supposed to be doing um, was it audio description practice? That’s right. And Jess of course is such a firecracker and is like Okay, well I’m actually blind so this is what’s going on. And just knew we would be friends, um, when you said, Well my partner’s a lighting designer which is really funny because I’m like that’s nice honey, but like I don’t care because I can’t see that.

[Laughter]

JW: Yeah whenever he talks about sightlines, I’m always like I couldn’t care any less about sightlines. Which I think is actually really a great practice for him of like figuring out what does sightlines mean for people who can’t see? And I think that’s something we actually have a discussion about. But yeah, that was our first time! And then we were like, I was like ugh! You’re behind these Twitter accounts.

[Laughter]

I know you.

KB: Yeah, that’s me. That’s me.

JW: Oh Crip friendship, so good.

KM: Now this is Kristina speaking, I feel like I need to tell the story of how Jess and I met. Which is basically that I knew who she was through Yousef and others who had met Jess at the Republic of Inclusion and I was very much intimidated. And then the very first time we had a conversation was at Cripping the Arts, um, when you came up to me and said, Can you please log me into the Wi-Fi? I’m blind, I can’t do it.

And I said yeah – of course – even though I had been told by everyone who worked at Cripping the Arts that I wasn’t allowed to give away the Wi-Fi password to anyone under any circumstances. Um, and then we, about a month after that spoke on a panel together at the Festival of Original Theatre. Um, still very much intimidated by you. And then we co-facilitated a workshop and I think after our first meeting in which I actually had a conversation with you, I told you I loved you.

[Laughter]

And now we’ve been best friends since then.

JW: I will say the intimidation was mutual. And I think this happens in Crip friendships where you’re like, because like all of our legacies kind of … you know, supersede us, like you know you hear titters of folks from different sides of the community and then when you meet them in person you’re like oh my God, you’re, you’re Kristina. Like …

[00:08:54] And I feel like we crossed paths at Tangled before, but once we started talking earlier this year or I guess it would have been last year, you know we really clicked in a way that … only access intimacy and like boss-ass bitch types could understand.

[Laughter]

KB: Yeah!

JW: Look at all of our Crip friends tendencies, I love it.

KM: I love it so much.

KB: I don’t know if all listeners know what access intimacy is, maybe we could chat about that, but Jess and I have um, in developing our friendship, incredible access intimacy. With Jess being blind, she has amazing sense of direction, um, which I do not. And I have a physical disability and like, I’m very bad at walking down the street, so we have this beautiful symbiotic thing where if we link arms to walk down the street I can see stuff for Jess, she can make sure I don’t fall on my butt and trip over things, so, it’s very beautiful. I don’t know if you want to talk about what access intimacy means to you more broadly for folks who might not know, but that’s one. 

JW: Yeah I mean that’s a great example of it, is kind of access intimacy, interdependence, and what Kristine Kelly calls friend-tendents. All merging together. Access intimacy is where Mia Mingus, an amazing BIPOC, Crip scholar and just visionary, um, from the States, she has a blog called Leaving Evidence and she defines access intimacy as that feeling of a quality when you meet somebody of them just getting what you might need and what they might need at the same time. And that you don’t necessarily need to explain every little detail, but they’ll just kind of get what you need in terms of access but also in terms of like complaining about Crip Stuff, which you know, the four of us all have been there and done that in terms of access and in terms of policy, and in terms of the arts. And so I feel like there’s this knowledge, this instantaneous knowledge of like not just like, What I need but that I might need something and that it’s totally cool and that we can figure it out together.

And I think that’s how I see friend-tendent as well, it’s like we develop a relationship based on this really interesting intimacy that we can have that’s rooted in our own needs and our own accessibilities but also our own thoughts and opinions and loves and dislikes and how it all kind of, it’s not a very – it’s a very soft, learning the term soft as I mentioned earlier – a very soft meaning. It’s not a very…you can’t point to something and be like, Well this is access intimacy and this isn’t!

[00:11:50] It’s soft. It means the edges are a little bit less defined, and I think that’s a really cool part about being in Crip friendship, is this idea that you can just sit down with somebody and you don’t have to then go and explain why you’re angry. They can just be like Oh, yeah. And I felt that with Yousef and Kristina as well in terms of moving forward as young folks in Canada trying to navigate being disabled, and like finding jobs and navigating the winter, and all kinds of different stuff. So I think it’s been, it’s been a really interesting crash course of lived experience with all of this.

YK: That’s really beautiful. I also think it, or rather I wonder um, how does that access intimacy for you play over into your role as a dramaturg in trying to um, you know, bring accessible dramaturgy into the mainstream? Um, for our listeners who don’t know or who may not be connected to the theatre world so much, a dramaturg is someone who either does historical research on a piece of theatre or um in Canada it’s more often related to um, the structure of theatre piece and someone who acts as that outside eye for it. No pun intended. 

Um – 

JW: Oh pun intended; pun intended!

[Laughter]

YK: But how does that access intimacy for you spill over into what accessible dramaturgy is then?

JW: I think that … [sighs] dramaturgy is so, it’s similarly soft in the way that access intimacy is, right? There’s no clear edge where dramaturgy begins and ends. I feel like I was in my Masters in 2015, and we had a full cohort of people who were like Hi, can we have someone come in and define dramaturgy for us? And they had like, multiple people come in from different countries and different perspectives and all of them had different definitions of what dramaturgy is. And so thinking through exactly what you said, Yousef, thinking about in Canada the way we conceptualize dramaturgy is yeah, it’s like um, the person, one of the people in the room who is constantly thinking about the structure, the puzzle pieces, and how the whole piece fits together.

And so, I mean … when it comes to working with disability and dramaturgy, I think access intimacy is actually the perfect intervention into how – I’m putting air quotes around normative – “normative” dramaturgy works, so people who are non-disabled dramaturging. Because y’know, I’ve dramaturged before where I just get a script and I go through the script and I ask questions. That seems to be my normative way of moving through dramaturgy with folks who are possibly non-disabled.

[00:14:48] And you know I ask questions like, What do you mean here? or I don’t understand what this moment is or Is this moment meant to be this or this? Whereas like my experiences of disability dramaturgy or accessible dramaturgy has been a lot of…I sit down with the artist, they send me a script and I sit down with the artist and I ask questions that are not just about the script, but are about Okay, you as performer—what do you feel comfortable with here?

Like one of the first examples I can think of here, is Ophira Calof culminated our friendship—not our friendship, our relationship—moving through disability dramaturgy with the Next Stage Festival that happened earlier this year in 2020. And we started the dramaturgy in August of 2019, and we sat down – and I remember the first thing that she asked me was, How long should I say the play is? And I was like, how – what is the maximum amount of time that you can say? 

And she said an hour.

And I said okay, say that. And she was like but I don’t think the piece is going to be an hour, but I was like neither do I but because Ophira is disabled and uses a massive power wheelchair and it will be winter when we perform and she has chronic migraines and chronic pain, I was like why don’t we just book it into – embed it literally into the whole like, what the Next Stage will think about our play is that you will be there for an hour, and we will take up an hour worth of time. So that means if the play is only half an hour long, and you need to start late because your wheels are wet which is reality for wheelchair users, the day we did our tech run actually in the theatre space she had to have a wheelchair technician come in and replace a wheel on stage during the show. So like, we’re glad that we built in that lateness, or that, you know, time flexibility.

And it’s down to those – and like it came in there, that was the very beginning of the process. Once we were—normally I don’t see a rehearsal, or I don’t see many rehearsals as a dramaturg. But for disability dramaturgy I’m there for most. And I was there in the rehearsal going, Okay, where is your break, how do you feel in this moment? So it wasn’t necessarily, it was textual, and it is narrative driven, but I find like for me as disability dramaturg my job, my role as an advocate to remind her that, remind the performer and creator that you are also human. And I think there’s something about … something about theatre [repeating in British accent] in the normative sense that’s like, You need to shed your needs and shed your human fluctuations for the show must go on, you know? That mentality of, of um, if you’re sick like how many times have I in high school for example gone on stage with chloraseptic spray sprayed into my throat because I couldn’t, it was in the winter? Or I was very sick.

But because the show must go on, I still go out there.

[00:17:46] My role as a disability dramaturg is to go, if you’re sick maybe we shouldn’t go on. Or if you’re sick, maybe you only do half the show and we build in with the director in rehearsal plan A, B, C, and D. 

And uh, we have a narrative that works for this for 20 minutes. We have a narrative that works for 45 minutes, and it’s hard, it’s hard work and it takes a lot of time. But it’s my, it’s my role as a disability dramaturg to make sure that not only am I the outside eye for the audience but I’m the inside eye for the performers, and I have learned this from disability, like from my research actually, you know, researching Boys in Chairs for example, the Boys in Chairs Collective. They do very short runs because they’re three wheelchair-using men who can’t perform a full seven show run week or whatever with one day off. Like, that doesn’t make sense. And when we were doing Next Stage with Ophira, it was really thinking through Okay like, we want to get you on stage as much as possible, but we don’t want you to blow a fuse.

So how can we build the show to actually respond to those needs of not blowing a fuse? And so that is the best example I can have in terms of … and why I was able, I guess going back to access intimacy, is why I’m able to know those things is that you know, I am trained in the performance. And I am, I’ve been on stage for seven show runs and I have done the research and done all of this work and also Ophira and I are quite close. And I think there is a part of that, you know, I do disability dramaturg with folks who aren’t close friends, but it’s that access intimacy of people knowing that I will…I don’t want to say take care of them, because hair flip I’m so good, but it’s more about – but also that too, but it’s moreso about they can focus on the work and I can focus on the structures and support structures around them so that they can do the work to the best of their ability at that time.

And I think that was a really unique and beautiful relationship that Ophira and I had, and you know I’d been doing it for a couple other artists since then, and I think that like, I don’t know, I was talking to a couple of different disabled artists friends in Canada and I don’t know if there is anybody necessarily doing this from an informed space right now. And so it’s kind of fun to be creating something kind of cool and new, and a new role, but I also just like … I don’t know … I think that’s another part of the access intimacy for me, the friend bit, the Crip friendship, which is like, I don’t want anybody to have to burn out.

YK: Yeah.

KB: Mmm.

JW: In the same way I did in theatre school or in academia. I have that lived experience, that lived knowledge of what it feels like to burn out because I’ve gone past my capacity.

[00:20:44] YK: That’s awesome. And it’s cool how um, it seems like it’s a, it’s an even deeper dive into like the core concept of dramaturgy and you’re actually taking apart like the traditional or colonial structures that um, Western theatre exists and um, which is you know, no matter how much I as an actor can love, uh, you know … being on stage, I can still admit that the actual structure of theatre, of theatres is often um, an oppressive environment with how much they make you work and what’s expected in terms of time isn’t necessarily healthy, so that breaking down is … brilliant.

JW: Yeah, and even – more so from like the structure of like performing also down to the building – right? You know, part of my advocacy is making sure that not just Ophira who is the disabled performer, main performer, not the main creator, but also like I can’t see, I’m blind so I need to have a space in the audience that’s close enough to Ophira so she can feel safe and comforted, but I can see, but I’m not taking up space…It’s a constant negotiation. And renegotiation. And I think it’s radical because people are really set in their ways when it comes to art practice. Um, you know. An art gallery is an art gallery, and like I was in a gallery last March, and I, you know, asked if my piece could be put at wheelchair height.

And it was funny how much the accessibility built into my pieces were much more interesting to people than like the narrative behind those pieces. And I’m just like I feel like because it’s such a disruption into this normal space that we have these expectations set up that people get really either excited or confused. And that’s happened a lot, especially when I disability dramaturg pieces where we do something extremely disruptive either on the stage or in a gallery or in a performance space. In a…in an education space, the amount of times I’ve done teaching and I stand up—I’m looking at Kayla right now—being like when I stand up and train for Relaxed Performance and I’m like I’m not going to visually engage with you, so I don’t care if you look at me in a lecture hall at York University. [KB: Yes, yes]. Like, I can’t see people’s reactions, but I wonder. You know? What they think.

And I do that in every classroom I’m in.

So you know, I also find that being disabled in these normative spaces is a disruption in itself. Especially when we don’t conform to the ways in which other people expect us to be, um, and being proud of that and confident is very difficult and I think that’s why as a disability dramaturg that’s also my role. Is when Ophira, when the creator, is second-guessing the accessible choices we’re making I’m there to go, no, I will fight for this. You focus on being the performer, I will make sure this happens.

[00:23:50] I will give them the receipts, the research. I will fight for this because, because that’s you know, it’s a part of being radical is being confident and that’s hard when it’s so brand new and you get a lot of pushback. So I find it very exciting, personally.

KB: Yeah, that’s exactly right, that sort of shocked or confused reaction to the disruption comes through in Relaxed Performance as well. Um, which I think, there’s a lot of misconception that Relaxed Performance is only for disability-identified folk. And then, if you’ve never encountered those disruptions before in those spaces people are like…what, what are you, what do you mean the houselights are going to stay up a bit? Or what do you mean this person who can’t see me is the one telling me how this is going to go, or this you know, person limping into the room is the one who is going to navigate this way of doing performance? It’s … um, it’s powerful to watch when the shift happens because I’ve, I’ve seen that um, and you’ve been there too Jess in those spaces where we’ve facilitated Relaxed Performance sessions before where initially people can be so um, resistant and thinking that implementing access will take something away from the magic of theatre or whatever it might be and then sometimes there’s a lightbulb moment where they see what it actually opens up and it’s just like, yes! 

JW: I also think and something along those lines is that, you know, these are not new practices, keeping the houselights up, people being able to eat in the theatre. People have been doing this for hundreds of years in different cultures, different places in the world for different reasons. But I think what’s exciting about calling it disability aesthetic or accessibility aesthetic or accessibility design is that, okay, you’re taking a thing that maybe already exists. We’re not reinventing the wheel here, right, all of the things when it comes to Relaxed Performance or dramaturgy or creating an accessible performance, it’s not really brand new. We’re putting a ramp on a stage; it would be really great if we were creating brand new things and I’m very here for that. But right now it seems like in North America we’re not quite ready to revolutionize the theatre entirely.

KB: We will cheer when there is a ramp at the Oscars or the Tonys. 

YK: Yeah.

JW: Precisely! Or that there isn’t a raised stage at all, that’s even what I mean in terms of radical. I don’t mean a ramp, I mean the space is designed by a Crip, a Crip person. But I think where we’re at is where, um, is where calling it accessibility design and calling it accessibility aesthetic is where we’re getting into disability justice; is where we’re getting into disability politics; is where we’re getting into the political framing and so it’s not just Oh, isn’t it cool that the house lights are up?

[00:26:47] It’s, the house lights are up for this reason. And I think that’s something that I want to see more, actually, in art spaces. Is I want to see more transparency and like obviousness to your – and I think Tangled does this quite well – and I think other galleries and theatres do this well, where they’re like, We’re doing ASL interpretation? Look at these ASL interpreters, that means Deaf people are here. And we’re doing audio description – I mean, it never happens, trust me, the amount of times I’ve consulted for audio description and I get dirty looks for wearing a headset in the theatre space because no one said to the other people in the room that audio description is happening. I’m ready for people to be like, There are disabled people here! And they are engaging with the performance as well!

KB: This Blind girl is not on a business call during the show!

JW: There is a theatre in the city that I will not name, that I have seen an audio described performance that had me hold headphones – over the ear headphones – heavy, big, tech headphones. And I was like I can’t even hear the other audience members let alone the play. And also it’s very obvious there are two Blind girls sitting in the front wearing these big headphones, who are having a different experience. That’s cool, I’m into that, but I’m more into the transparency about it to be like, This theatre supports disabled people so much that we’re gonna talk about it obviously. And I think Theatre Passe Muraille does that a little bit, Andy McKinn started that, the artistic director who just left, and I had a lot of conversations with him about Relaxed Performance in particular and post-show discussions. And moving forward with Marjorie Chan, I think she’s definitely understanding of that transparency we are looking for, because disability doesn’t need to be covered up in the arts.

And when I say disability, I also mean accessibility. You don’t need to hide the accessibility and the accessible things that you’re doing away. It actually – it’s a part of disability justice to be very obvious about it. That’s the big thing about anybody who ever asks me about being accessible and having accessible events: how do I make it accessible? I’m like I don’t know, just say what you do and don’t have. Put that on the Facebook event, you know?

KM: Yeah, exactly.

JW: So there’s my rant about that. I got really into that, thanks guys!

[Laughter]

YK: It was a good one.

KB: It’s good, it’s good.

Speaking of disruption, I see a book behind you on your shelf, I see it – place of pride – Jess is pointing to this book, Jess would you like to tell our listeners why I’m gesturing to this book?

JW: You’re gesturing to a book behind me and I think you’re gesturing to it because I, I’m currently coming out with lots of publications. You can find my stuff everywhere, just Google me – no I’m just kidding [Yousef laughs]. I said this to my brother recently, this is totally an anecdote, who’s 19 years old. And he Googled me, and he was like oh my Gosh, Jess, you have so many publications!

[00:29:50] I was like yeah; I don’t tell you about everything. Also because he’s 19, like is he gonna care about…? So this book is called Women and Pop Culture in Canada, it’s edited by Laine Zisman Newman, who’s a good colleague and friend of mine. And it’s essentially a ton of critiques of different pop culture in Canada in terms of feminism and queerness. And my chapter is about a podcast, it’s—actually, I don’t think I talked about this to you…oh, I have talked to all of you, but it’s kind of funny I’m on a podcast—talking about good podcasting politics, especially when interviewing disabled women in this group, in this book. 

So I’m really loving, I’m really loving writing accessibly in terms of my scholarship. I think being an artist and interested in disability politics has really helped that. But also I’m usually the only Crip in any book anthology. Now that’s not super true when it comes to writing about all of disabled things, but you know in an anthology like this, Women and Pop Culture in Canada, I am probably – I haven’t read through all of them – but, uh, they, I – looking at the table of contents it looks like I’m the disabled representation there, which is extremely valuable and exciting. And I do have a book project on the go right now, called Interdependent Magic: Disability Performances in Canada. Um, which is gonna be the first anthology of disability plays in Canada.

There are a couple in North America, and they do in like the United States, they do talk a little bit about Canadian plays but it’s like, Creeps by David Freeman which we may or may not know is like 50 years old [laughter]. And maybe has some problems in itself. So this book I’m working on, um, is all contemporary artists, all scripts that are going to be created like specifically for this anthology. They’re all shows that I’ve seen for the most part, we have representation of – uh – a swatch of disabilities. You know, trying to curate and I’m sure curators understand this but like trying to curate, air quotes, “diversely,” like meaning to curate without a checklist but to still hit as many you know, different disabilities and different ethnicities, different cultures, different places in this country because Canada’s so flipping big, trying to find you know, representation not just from Toronto but also from Indigenous cultures, and also from folks who are neurodivergent. Like it’s been, it’s been a journey to get there. And uh, I’m super excited with how it’s turning out right now. 

It’s going to be coming out next October 2021 with Playwrights Canada Press. But it has been such an honour to do this kind of curation and editing, and Yousef is going to be writing an introduction for one of the plays. And I’m just, I’m so excited about it! I’m still trying to figure out how to describe interdependence for the book right now. It’s um, you know, little sneak peek.

[00:32:50] The first opening of the introduction that I’m writing has a poem that I’m writing myself about interdependence because there was no other way to describe – it’s so hard – again, a soft concept of being like, Where does interdependence start and end? But I figured with the varying disability communities, disability arts communities in this country trying to capture that is, is an interdependent process in itself. So I’m super excited about it and I really just wanted a book that you know, I went through theatre school. I went through my undergrad in a BA department with theatre and English as my majors, and I was asked what could you do for theatre as a blind disabled person? 

YK: Ah yeah.

JW: And I kept asking for disabled plays, and no one could hand me anything other than Creeps by David Freeman. Right? So I am super excited because you know, I started this academic journey hoping to make change for my communities, specifically disabled people in the arts and I think this book is the first kind of tangible step that I can be like, well, now there’s no theatre educators who can go, I don’t know – there’s a book here now. Chalk full of interviews and actual plays that you can study in a classroom of disabled experience voices, everything. And so there’s lots of intersections in there, I’m really excited about the different, uh, you know – Chris Dodds’ play Deafy is going to be in there which is super exciting, and Alex Bulmer’s first play Smudge is going to be in there. You know, it’s just one of those things that I’m like, I get to be with a bunch of my friends which sounds like nepotism, but it isn’t, because for the most part it’s not a huge community, disability arts in Canada. I think it’s going to be one of those things that I can look at and be like ok, I feel like I’ve actually left something for this community that feels real and will – and that people can’t ignore us anymore. I’m thinking theatre institutions that are doing education.

Um, I mean I guess theatre creators as well, but I think I’m more thinking about education just because that’s where we need the most advocacy right now. Um, but yeah I’m super excited!

KB: We’re excited too! I’m gonna – like and subscribe – by which I mean preorder, uh, whenever I can.

JW: Yeah, I’ll let y’all know.

YK: Yeah, and I’ll definitely say like I think I’ve seen most of the plays that are going to be published in it, and it’s such a great range of work and especially you know as you’re saying about the diversity you know, I always come back to like the Crip community. We can’t help but be diverse because you know, it’s not like you know, one group is going to be more Crip than the others. It’s, it’s a really, it’s like a random selection of people from all these different backgrounds and you being able to take that and acknowledge that there’s such a massive range of voices out there.

[00:36:02] Within the community and including that, I think it’s going to be a really really special book. And I’m not just saying because I’m writing an introduction.

[Laughter]

JW: But I also think, the other thing I’m excited about is there is this idea that um, that there is representation. So I, I won’t go into too much into it, but I have an interview that will hopefully be in the book, we still have to figure things out, that’s about Indigenous disability and Indigenous disabled folks and how the disability arts culture and communities in Canada aren’t as diverse as we think they are. Because of colonization and because of um different racist, uh, barriers to – especially to Indigenous folks – to get into training institutions and have those opportunities. And so I’m really hoping to build some relationship there as well with some guidance from the Indigenous folks who are in the book because I feel like it’s such a priority for me as a white settler to, to do this reconciliation within publication even, you know? I spoke with one of the artists about publishing a play and he was like, I don’t feel comfortable having it published in this anthology in terms of like, Indigenous ownership and governance.

And I was like I hear that. Like I agree. And you know we had this similar discussion with Deafy, with Chris Dodd especially about printing in English and publishing in English because it’s predominantly in ASL and so I’m right now really thinking through about images and how we can maybe take a living language, like ASL and move it into a publication. 

So it’s also brought up these really interesting discussions about ownership and publications and “Canada,” air quotes Canada, what we now know as Canada, and how to reconcile between all these different things. So it’s actually been – such a pun intended – eye opening experience, single eye because I only have one [laughter]– but eye-opening experience because I’m, because I’m literally getting a crash course in, in these ethics and protocols and, and trying to navigate with a you know, publisher and being like ok, well it’s gonna take…Crip time! Like it takes time to do all this stuff and, and so it’s been, you know, Playwrights Canada Press has been so welcoming and we’re talking about accessible formats as well and publishing in accessible formats from the get-go. It’s just been a really great experience, um, now with the deadline it’s September 1st, so maybe in a month I’ll be like I don’t know! Because I get so nervous.

I also have this thing where I’m like Oh no, if I publish something I can never change it again. Like what if my thoughts change, and what if things change?

So I’m also kind of aware of that as well and I’m, I’m excited-nervous you know?

YK: Yeah.

KM: You mentioned being an undergrad in 2015. What are some of the biggest changes that you’ve been able to witness since 2015 as an undergrad to now in 2020 as a PhD candidate in theatre?

[00:39:12] Especially in disability theatre, accessible theatre, disability dramaturgy, disability justice within theatre in Canada? 

JW: Yeah. I mean, I actually graduated in 2014. But, I think that I understood it more post-undergrad. And when I say it, I mean everything. I went to my undergrad in Guelph, Ontario at the University of Guelph, tiny, tiny little program. We had 35 graduates. I was obviously the only disabled person, although there are you know, disability – there weren’t as many disclosures as maybe…I had to disclose because, y’know, I could fall off a stage. I think what I’ve learned the most, when I graduated I had such a tumultuous uh, undergrad because I originally started as a minor in theatre and was a major in English which is ironic because I can’t read books with my eyes, so I read on average 15 books with my ears per term. So that’s like a lot.

And so by about halfway through my journey in my undergrad, I was really struggling to make my own route through disability. I didn’t know a lot of disabled folks; I wasn’t in the disability justice community. I was in the Blind community; I was on committees for disability but I wasn’t really with advocates, or I wasn’t reading the scholarship or seeing disability plays.

And so all I knew was this theatre world that I, I was tangentially getting exposed to. And then I took a trip to England. I took four months in England my third year. It’s the first time I’d been on a plane by myself and the first time that I’d been outside on a trip without my family since I had been Blind. I only went blind about a year before I went to undergrad. 

So I learned – again, I keep talking about crash courses, but I really got a fast, quick and dirty way of being disabled in the world outside of my cushy, small town uh, Ontario vibe. And I came back to Canada after that four months a new human. I wanted to take acting, um, I took my first acting course that spring. Um, I wanted to be a theatre major immediately and I wonder about, again pun intended, London opening my eyes in a certain way to the possibility beyond what I was being told by you know, I had just gone blind before I started my undergrad. People were scared. My parents were like, my family was very much like, Do everything safely, you know? Don’t take too many risks. And when I wanted to go to England they all supported me obviously, but they were very scared and hesitant.

[00:41:57] Upon coming back and seeing my confidence and seeing my excitement for live theatre that could do stuff. Like I had seen shows in London that made me feel and do things. And so coming back I was like I want to do that, and I got woke up to dramaturgy and play writing. I really, really delved deep into it after that. And I still in my undergrad was in this bubble in Guelph of like not really knowing any community. And then I started working more for the Canadian National Institute for the Blind, I started working more in a leadership capacity there. And by the time I moved to Toronto I was extremely like, equipped but also I had never lived in a big town before. And I think the big city really…the big cities, that was it! Like London, England and coming into Toronto and feeling the independence. And I say independence intentionally because 2015, when I came to Toronto I was alone. I knew nobody. The only people I knew were my friends from the CNIB which were like, people who technically taught me things, so I was their client [laughs].

So I didn’t really have…like they’re lovely people but they’re not like friends, right? So until I think a year in, until I understood theory more, until I understood the art vibe here in Toronto, I felt really alone. And you know, I had gone through this undergrad where I had carved a path. Like I had really you know, and I remember saying at graduation being like, I made changes in this program, so no one has to go through the pain that I had to go through to get there. The inaccessibility that I had to go through. And I still say that, but then coming to Toronto and being really opened up to my own path with activism, my own path with art, I never felt pressured to perform anything before I was ready. I’ve had, I’ve had offers from people being like, This could start your acting career! And I’m like, I don’t know if I want to be an actor. I think those decisions early on in my Toronto journey um, really helped me get to what essentially brought me into disability justice which was I was having a time, it was in my first – it was around 2017, it was around my second year of my PhD and I was doing some activism. And I can’t go into it too deeply. I was getting some pushback, some not very good um, responses to the activism I was doing. And it was feminism, it was you know, without again going too much into it, it was a lot about We believe victims, we believe survivors, that kind of thing.

And it got to a point where I went into my department and said look: there is a disability leadership summit happening at Banff, at the Banff Centre. And can this be a research trip? Can I go and it be a research trip?

[00:45:00] And the truth behind those questions was, I need to get out of this fucking place. I need to leave here now, and I need to be within the mountains. It was like February, I was like I need to be in the mountains, I need to be alone and I need to be with other Crips! I just need to go.

And I went and I met Jan Derbyshire, and Michelle Deconitez, and Ricki Entz, and Emma Campbell. And I met some really incredible…like Lois Brown and some really incredible disability artists. And I’m getting tingles thinking about it. Like it changed my life, being there. It brought me back to feeling like myself, I felt playful, I wrote a monologue about the Great Lakes [Laughs]. Because I was like I’m in Alberta, and like they don’t know about the Great Lakes so I’m going to tell them about my homes which is like Lake Huron, Lake Ontario. Anyway, I am really nerdy, and they loved it. I met Sarah Garten Stanley and Syrus Marcus Ware, and they invited me to the Republic of Inclusion. That time in Banff, I can’t remember what it was called but I always call it the Banff Centre Disability Arts Leadership Summit or whatever, and it taught me about co-creation and interdependence, and I was like Oh – oh! Like everything clicked. I think Jan Derbyshire, who I believe goes by JD now, it felt like having a mom. Like—you know, they would come over and be like, It’s so nice that, it’s really nice to see you today. And I was like Oh! It’s really nice to see you, too! 

And they to me are an elder in our community, I’m not sure how we feel about disability elders in Canada yet because Jan’s not young – she’s not old – right? She’s not an elder in that grandparent sense, right, but she made me feel at home. And I felt like my voice mattered and the second that happened, even though I wasn’t a professional artist like the Canada Council might say, and I didn’t have any public showings [grumbles]– all the things that make you a professional artist, like I was new. Brand new. Baby. But having someone be like, You’re so welcome here was just like, again, still brings me tingles and every time I see JD I’m like, just so grateful for the care and compassion that they showed me. And I think like that’s something, post-Republic of Inclusion which was an intense time as Yousef can say, to say the very least, understatement…Since then it’s been a priority for me, for anybody I meet now in our community is to immediately try and make them feel at ease and welcome. Because I remember that feeling of being so … burnt out by activism and so burnt out by the systems that I was dealing with and feeling so alone in Toronto and then coming to Banff and having people be like You belong here. Even if I haven’t, like I say, been in a gallery or been in a show.

And so, but I was making art. 

[00:48:05] And they were like Of course you’re an artist! And that, for me, brought me into disability justice, it brought me into activism in terms of cripness, it brought me into … it was interdependent magic. Like it really felt like magic. And I am, I honestly cannot be more grateful to that weekend in the mountains. I cannot be more grateful to the people I met at the Republic and the opportunities I’ve been given, I’m extremely privileged and extremely grateful. But I also am like very knowledgeable that I worked really hard for this, and I, I always try to give back to this community. New artists, emerging artists, children – you know – children, people in school. Because I’m like, it could make a huge difference just to be like, You belong here

 

KM: Mmhm.

YK: Absolutely. And I think we’ve seen you do that, at least I can say I’ve seen you do that since I first met you.

KM: Same.

KB: Same.

JW: You guys are going to make me cry!

KM: Yay!

[Laughter]

YK: Yay!

KB: Tears on the first episode! [laughs]

YK: So we’re coming close up on our time here, but before we get to the wrap up there’s one more question that I really want to hit on. Um, so thinking about like all the things that you’ve learned, like doing accessible dramaturgy, as an artist, as a person, as someone who just goes out and sees theatre, um, when you dream of the future of performance, what do you envision?

JW: I dream of a performance future that is anti-capitalist. That has no barrier for access to see the show; I don’t want to have to spend $75 to get into, you know, an incredible show that I need to see. I want to be able to either pay what I can, pay what I think, which are two…or, I have this dream of like exchange – where it’s like Here’s a ticket to my show, can I come see your show?

That’s my dream in terms of capitalism. I have a dream that disabled people are not seen as disruptions in theatre spaces ever, meaning like … all of the chairs in the theatre are removable and all of the places in the theatre space, audience space are accessible for any mobility device user and any person.

I dream of a space that is decolonized in a way that feels … I don’t want to say natural but feels right to the people that that affects. I don’t want it to feel stagnant or weird when we talk about the land that we’re on and how we’re not invited there.

[00:51:08] I think that is starting to happen, but I think it needs to happen everywhere and all the time. I think that the idea of feeling … I don’t think we need to feel safe in a theatre space in terms of like, You may not get offended; I think you need to feel safe in terms of your physicality, but I think I want to continue and push for a challenge and also joy and enjoyment. Because I think there’s like a balance between shit that like, deals with the hard stuff, and shit that makes you feel good. Because I think people you know, I don’t always want to see a play that’s going to make me cry. I do a lot of the time – I really do. And I could write and tell you on one hand the shows that really have gotten to my soul in this city, for the past five years that I’ve lived here. I dream of a performance culture that is rooted in lifting people up and critique that is not based in malice or um, ignorance but it is rooted in making this industry better. And so I think that is anti-capitalist, I think that is anti-ableist, I think that’s anti-racist. And that might [exhales] – that’s going to take some time. I don’t think it’s actually possible to do, um, in the way that we understand economy and the way that we understand each other right now.

But the dream of feeling like, that feeling of welcome that I felt with JD many moons ago, where I felt like I was so terrified to walk into that space, which I am a lot of the time in the theatre, where am I going to sit? Am I going to sit on someone’s lap today? Am I going to find my assigned seat? Those fears wouldn’t be there because I would feel welcome. Nobody, not just me, anybody could feel comfortable walking into a space and asking for something and that being received. And that can be disability and that can be in terms of class privilege, and that can be in terms of anxiety and mental illness. Like I think there are lots of ways to make people feel welcome and that’s the theatre that I dream about, and I would also love to just see less white, cis, able stories on the stage.

I would really like to see different stories of enjoyment and challenge because I think a lot of the times in the way that Cahoots theatre describes, um, theatre artists from the margins or from the edge, a lot of the times those – so like marginalized folks – people who are marginalized tend to stereotypically the shows are all very sad and deep and gloomy and you know, they say, they tell us the stories of hardship.

[00:54:05] But there also is a fuck ton of joy here! And you know, I want to see joyful stories. I want to see celebration and pride and I think that it’s gonna, again, take a big turn and a big movement past what we’re dealing with now. But I think there is so much capacity for our communities to demonstrate and perform joy, that I’m hopeful.

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, and supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview we release new episodes every Monday wherever good podcasts can be found.

[Jazz music outro]

[00:55:02]

Jeff Thomas

Crip Times Episode 5: The Jeff Thomas Episode

This week, Kayla and Yousef are joined by Jeff Thomas, a Governor General Award-winning Indigenous photographer. Jeff provides us with some background on his photographic work which began in the 1970s as a response to the representation of Indigenous people through historical photography, and how it has grown and changed since becoming disabled.

“Everything comes at its proper time”

Jeff talks about turning photographs used for propaganda into tools of revitalization, and how he’s trying to continue the storytelling tradition in his family, blending this with new technologies such as 3D scanning and drones.

In his work Indians on Tour, Jeff explains how he plays with Indigenous presence where it wouldn’t otherwise be visible, by photographing miniature figurines all over the world.

CRIP TIME’S FAVOURITE QUOTES: 

“There’s been a large focus on developing your voice, finding your voice in the various mediums. And also you have a foothold in museums and art galleries and art institutions. We’ve done very well at that. My feeling now is that the time is to focus our work on reaching our own communities. People – young people – who, especially could benefit from the work that we do…and to find a way to encourage Indigenous young people because coming from the era of the residential school, you know ‘education’ has been a negative word. And how do we begin to change that around? And I think there’s a real strong sense that we are connected to the visual arts as a people in terms of expression.”

“There was no one around, no intellectual base that could talk to in terms of photography and what it means to Indigenous people. These were questions that I tried to address when I was even in high school, and even along with the urbanization challenge of How do you identify as Indigenous and living in this city? Is there a difference between urban and reserve Indigenous people, what is it and how does it make us think differently about ourselves?”

“I realized at a certain point that nobody was going to come along and you know, like what I call the “Super Elder” [laughter]. The person that had all the answers, you know, that could put into context residential schools, colonialism, along with urbanization, and photography and representation. I realize that no, that’s not gonna happen—you have to do it yourself.”

“But it’s the pursuit of realizing that our cultures have never been static. They’ve always been in flux. We have traditions, we have things that are being carried on. We still have Indigenous languages that are around. I want to know where do we go from here? How do we build on that, and is there room for a new kind of language? Is there room for a new type of ritual and ceremony that revolves around the arts?”

Full Transcript

[Podcast begins: 00:00:00]

Narrator: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Kayla Besse [KB]: Hello and welcome to the fifth episode of Crip Times.

Kristina McMullin [KM]: Today on Crip Times we will be listening to Jeff Thomas, with my friends and your hosts, Kayla and Yousef.

Yousef Kadoura [YK]: Hello Jeff and welcome to Crip Times, thank you so much for being here with us.

Jeff Thomas [JT]: My pleasure.

YK: I was hoping you could share with our audience a little bit about who you are and um, what your practice is.

JT: OK, well my name is Jeff Thomas. I was originally from Buffalo, New York. My reserve is over here from the Six Nations of the Grand River. I’ve been living in Canada now since about 1983. I was in a car accident in 1979 and I couldn’t return to the type of work that I’d been doing at the time, so my life changed quite a bit at that point. And I moved to uh, Toronto and started to uh, look at photography as a new way of, a new … something new for me to do since I couldn’t work anymore. And that’s where my career actually started was in Buffalo and then it became much more focused while living in Toronto.

But that’s what I’ve been doing since the late 1970s, developing I guess it initially began as a response to the representation of Indigenous people through historical photography, and then I used my own work as kind of a counterpoint to the historical narrative as a contemporary component. So that’s been the uh, the focus of my new career. 

KB: Yeah, that’s excellent. And um, maybe you want to talk a little bit about more specifically how you reach the larger Indigenous community through your work, through the internet and other technologies of this time?

JT: Well, I find that uh, because working with a disability it’s been uh, very advantageous to me to have new technology to be able to uh, continue to be active and to reach an audience. And I think also too to build up a larger audience in the Indigenous Arts community.

[00:03:00] There’s been a large focus on developing your voice, finding your voice in the various mediums. And uh, also you know, having a foothold in museums and art galleries and art institutions and that. We’ve done very well at that. My feeling now is that the time is to focus our work on reaching our own communities. People – young people – who, especially could benefit from the work that we do…and to um, find a way to I guess encourage Indigenous young people because coming from the era of the residential school, you know education has been a negative word. And how do we begin to change that around? And I think there’s a real strong sense that we are connected to the visual arts as a people in terms of expression and that.

So I found that using photography was a way to bridge that gap and to begin uh, finding what it is that we want to say through photographs. But new technology, the fact that it’s brought around me to my current program of work of using it to, I guess really build on my role as a storyteller. I’ve been working in photography for a long time, but it never felt comfortable you know in terms of the art gallery space, the kind of space of the museum. And how do we begin – because it’s not Indigenous. And how do we begin to address that? So that’s been the focus of my work all along but more when new technology came about it, offered me tools I hadn’t had before.

And that’s what I’m currently developing in my work.

YK: Are there any of those tools in particular that you found to be very successful in reaching young people? It seems to be something that like, community seems to be such a big part of what you do, um, have there been any of those tools that you’ve found particularly affective or that you thought would be effective and turned out to be, y’know, not so much?

JT: No, not really because I’ve really developed my practice with patience. And thinking through and moving along at a reasonable kind of speed. And not getting too far ahead of myself! And I found that you know, with new technology and that, it just, I began thinking about my practice in a different way at that point. Expanding on it. But I think that probably the best example, well I didn’t have any negative responses, especially with the work that I do as a curator with historical photographs. Because in 2001, I developed a residential school exhibition, Where Are The Children? And it opened here in Ottawa on National Aboriginal Day in 2002.

[00:06:00] And at that time, there was a lot of hesitation as to whether or not you could take photographs that had been produced as propaganda for the residential schools, and turn them around and use them as a way of revitalization, and seeing ourselves. And so there was a bit of criticism before that because people just thought you know, you can’t do that. But it turned out that the exhibition has been travelling across Canada to this day. So from 2002 until now, it’s been on the road. And it proved to be very effective in terms of stories that the community is able to tell through the photographs. So the photograph itself became a catalyst, there’s no right or wrong about it, it’s just a place in time, and how do you add your story to that image?

I think in terms of that it’s been very effective in my own work, my personal work, I’ve been looking at developing a new body of work called Where the Rivers Meet. And it’s really determined by my real desire that I had when I began to work in photography to find something, a format, that’s Indigenous. And so with this new body of work that’s what I’ve been doing, is using the Wampum belt format that’s a traditional way of capturing history in Iroquois culture and utilizing that as a format and then playing around with the images that I use, juxtaposing it historically and contemporary.

The idea behind the work is really to get people thinking and the clash of two disparate images, what comes out of that? And so that’s what really intrigues me. It’s not about, I guess, reading the photographs in a particular way, but really finding your own voice. Because when I was growing up there were two storytellers in my family. It was always interesting because there was always a certain point where listening to their stories you would find yourself drifting off and inserting your own feelings or impressions into the story. And then you come back, and it’s like you didn’t miss a step along the way. And I always thought that was something that was very remarkable about Indigenous storytelling, is that you find your own level within that. And that’s what I’ve been trying to do with my own work.

I think now that I’ve uh, started working in really referring to myself as a photo-based storyteller, is to, um, to build on that idea. So how does the story manifest itself today? So it’s a part of the Wampum belt series. Wampum belts traditionally had been told orally by the keeper of the Wampum belts, and I wanted to apply that as well to my work. 

[00:08:48] And so I’m developing stories that go along with each one. I’m gonna record them and then I’m working on a new website now that will have all of that information, you know, all the research materials, the story behind each, each belt. And um, and also you’ve seen uh, 3D scanning as a part of it as well. So that’s been the most interesting part because I found that working as a disabled person, as an artist, that there’s only so much that I can do. And um, especially now at this stage of my life, and so I’m working with a technician who is able to go out and to actually scan uh, different monuments. In Toronto um, he did the um, uh … the Hockey Hall of Fame. And above – that used to be a Bank of Montreal – and above the Hockey Hall of Fame is a crest that usually has two Indian men on it. But this one, the date is 1885 and it has a woman on one side. And I’ve never seen that before.

So my technician was able to go there and use a drone and 3D scan the façade along with the crest. And it’s just amazing, what it does.

So how do you create a story from a 3D scan? Looking at the material that he shot so far it looks like a dream. You know? It has that kind of feel of disjointedness, from the reality that we’re used to. And I just love that feeling of that, of letting the mind kind of soar in that area. It’s currently in a process of Okay, so what stories are we going to write to go along and incorporate this into the work?

And then of course it can be incorporated into a website and reach a larger audience, coming back to your question. Um, as well. And I think in using 3D technology and things like that, and drone, is that it’s gonna capture a younger audience. Which is what I’ve been wanting to find a way to do to make it interesting and challenging. So, yeah.

KB: That’s amazing. Do you have a projected date for when that’s available online, or is some of it online now? 

JT: The new website won’t, well it should be going up probably early next year.

KB: OK.

JT: And the title is just simply wheretheriversmeet.ca. And I’m not sure when we’re gonna launch it yet but there’s still a lot of work to do. That’s the idea.

And it’s gonna work in conjunction with uh, Bodies in Translation uh, they’re the ones that have funded the uh, technological part of it. And um, I’m going to incorporate it into an exhibition as well so it will have uh, a wider audience in terms of who we want to reach in that, so.

KB: Right, that’s so exciting, I can’t wait to see it!

YK: That’s fantastic.

[00:11:50] KB: I think I wanted to chat for a minute about your relationship to Bodies in Translation and your relationship to disability art, if that’s ok. Um, when we spoke before you said you never really addressed your disability until you worked with Bodies in Translation. And um, it was the first time you had heard an Elder – Elder Mona Stonefish – talk about disabilities. And that really informed your work and your identity in new ways. So, um, maybe you want to talk about you know, limitations and challenges but also new uh, new ways of, of working and modifying in a disability aesthetic way, blended with your Indigenous art. 

JT: Well the way that it all began was you know, as I mentioned before, after my car accident um, I had to find something that I could do with my life that um, that I could physically handle. And um, and that’s how I fell into photography. But in the beginning, it was more of a – let’s say – a way of getting myself out of the house. So I would go for a walk as part of my rehabilitation and uh, each day I would go out a little bit farther and I decided to take my camera with me. And started making photographs along the way. And it just continued from there, uh, and my focus at that time was really on the um, on the I guess just the regular everyday landscape of Buffalo New York. It wasn’t anything strategic in terms of addressing Indigeneity within the city urban reserve and all that, that would come later. But at the time I had to make a decision, um, over a period of time as to whether or not I would continue to go through uh, with rehabilitation, things like that. 

I had pretty much exhausted everything that I could reasonably do. But I had to make a decision that I would pursue my work over everything else. Because I only had enough energy to do one thing. I couldn’t go through rehab or continue doing that and also the dream that I had in the arts.

So that’s the decision that I made, and from that point on my – I guess my real objective was to prove to people that even an Indigenous person with a disability could reinvent their life and become successful from it. I wanted that, I wanted that role um, to take on and to prove that. Because when I had my car accident and I was in the hospital in Southern Ontario, the doctors were – they kept on questioning me – and thought I was drinking. That I had you know, passed out at the steering wheel and hit a telephone pole. And it didn’t seem like anybody really believed me, that I wasn’t on drugs or something. But I wasn’t. And it just set in my mind that I have to prove to all of these people that they’re all wrong, and that I couldn’t really get a career, um, started after what I had gone through.

[00:14:55] So that was the objective. And I just started teaching myself all the things that I needed to know, and pursue developing a career. And to my surprise it developed into a career, which I didn’t expect. I hoped it would, but I didn’t really expect it to! And uh, I guess that my feeling was never to kind of dismiss my disability, but to be able to not let it hold me back and to not kind of think about it all the time.

So, it’s kind of a mind thing that you know, you’re playing with on yourself. It’s like how do you, how do you get into a state of mind where you still deal with the pain and the disability, but you still pursue this? So it all worked out in that sense, and it really, as you mentioned, Mona Stonefish…it wasn’t until I went to the first meeting for Bodies in Translation that I began to get a different sense of my disability coming back into focus and realizing that well you know, it’s time to start making it the focus of my work. And I had never been anywhere before where there was an Elder that talked about Indigenous people with disabilities, it just – you know. 

And I think that was part of why I was able to work so well over the years, is because there just, there wasn’t any kind of conversation about it. You know? You just … and there was no conversation about Indigenous photography.

So I was, I guess the challenge really worked out well for me because it cleared everything else, and that’s all that I did.

But now I, it’s … and I guess the way that I look at it now is that everything comes at its proper time. And actually it was a friend of mine, Anna Hudson who works as a professor at York University, had suggested to uh, Bodies in Translation, for a possible project and that’s how it started. At that point, I would say that it was 3 years ago that the conversation started and then Bodies in Translation accepted our proposal and I had to really start thinking about how do I incorporate new technology into the stories that I want to tell? I had no idea.

So it took a couple of years just constantly thinking about it and thinking uh, how am I gonna accomplish this? And so it began to work out and now it’s um, I’m finding that um, it’s, it’s very effective because losing more mobility as I get older, it seems to correspond with what’s happening now and I don’t have to travel in order to find what we’re doing now to have a conversation in person. Do it … you know, through the internet which is great. It’s been really interesting for me to experience a way of continuing to work with my disability.

[00:17:50] And to even broaden it farther than I would have without the technology. So. Yeah, it’s been pretty amazing. 

YK: Yeah it certainly seems like it. What really strikes me about all that you’ve just said is—correct me if I’m wrong—but it doesn’t seem like you … you had, your cultural touchstones growing up and your relationship to storytelling and all these different things that have shaped you as to who you are. Yet you’ve, and yet you’ve gone on this journey to become this fantastic photographer-storyteller, um, artist. And I was just wondering what would you, what would you pass onto um, our younger artists who look like yourself? 

What would you have wanted at that age? When you were starting out?

JT: Mmhmm. Yeah.

It’s, it’s been an interesting question because it’s one that um, it’s just really um, kind of directed my more recent work. And um, I was you know, growing up I was very fortunate to have my grandmother, my great-aunt in my life who were my mentors and Elders. And uh, provided me with a direction and a work ethic that um, that I used. I didn’t have uh, male role models because my father was an absentee father. My grandfathers, I didn’t know one grandfather and one had passed away just before I was born. And you know, there was no one around, no intellectual base that could, I could talk to in terms of photography. And what it means to Indigenous people. These were questions that I tried to address when I was even in high school, and even along with the urbanization challenge of how do you identify as Indigenous and living in this city? Is there a difference between urban and reserve Indigenous people, what is it and how does it make us think differently about ourselves?

So there were a lot of questions that came into mind at the beginning of my practice. I realized at a certain point that nobody was going to come along and you know, like what I call the “Super Elder” [laughter]. The person that had all the answers, you know, that could put into context residential schools, colonialism, along with urbanization, and photography and representation, and you know. I realize that No, that’s not gonna happen, you have to do it yourself.

And so that was my working premise for my work, how was I gonna accomplish that? And I found that, it was interesting, because dealing with these issues I realized that with my Elders that they couldn’t, um, we would have conversations. 

[00:21:05] But those conversations I realized that they were all directed towards me in terms of I had to find the answers to my own questions. And that’s what I decided I was going to do. and in terms of I think my curiosity about the world is what really has driven me in terms of wanting to get out and to see and to understand, and how do you find a balance with your identity in an urban setting? And that led to my work with public monuments. And using those as kinds of way points on this new map that I was developing and what is the importance of a public monument? In terms of my work with Indigenous representation or kind of stereotyping a monument, it gives you a place to talk, to focus on, to photograph.

And so developing conversations. So in my mind, during all this period of time I was having these conversations, not with a real person but with myself, in my head. And um, and so … I think that when I look back now, I wouldn’t want to change anything. Because I love the way that it forced me to think and to learn. And to look at issues and find an alternative to it, or a way of, let’s say of bridging historical photographs to the contemporary world. What is the value of those photographs? And how do we, how do we create a new um, a new voice along the way? I realized that in my mind, that historical photographs were latent in terms of like a negative, a black and white negative. And so you have this latent image, you know, and how do you develop it? You make decisions about what you want to do in terms of developing it, printing and um, and then um context.

KB: Mmhm.

JT: So looking at historical photographs in that way was the same. And just worked out a bit differently. 

But nobody could have taught me these things, so I had to learn as I went on. And I also made a deliberate decision, when I was in university they had a photography program. And I decided not to go into it because I didn’t want anybody kind of changing my direction. I wanted to stay as pure as possible because I knew that uh, what I was looking for didn’t exist yet. 

KB: Hm.

JT: And even my mentor in Buffalo, Milton Mergogin, was a well-known documentary photographer. 

[00:23:40] And when we looked at my work he looked at my powwow photographs on my second visit, and he wasn’t as happy as he was with the first work I showed him, which was my urban studies. He thought that, Well, isn’t there something you could be doing that’s more beneficial to your community than photographing powwow dancers? I couldn’t answer him at the time. This was about 1981. And now I wish I could go back and talk to him and tell him exactly why that was important. Because now I understand it.

But it’s the pursuit of um, of wanting to understand what it is – the pursuit of realizing that our cultures have never been static. They’ve always been in flux. And so why not at this point? We have traditions, we have things that are being carried on. We still have Indigenous languages that are around. But what I see is that I want to know where do we go from here? How do we build on that, and is there a room for a new kind of language? Is there room for a new type of ritual and ceremony that revolves around the arts? 

That’s what intrigues me. And that’s what I’m looking for. So that applies to anybody. When I look back I wish I knew these things back then, but of course that’s not the idea, you don’t want to see into the future because if you do that than what’s the point of living? You know everything already! It’s the unknown that is really, really interesting.

KB: Mmhmm.

Yeah, I – I really love that you knew even those many years ago that you know, formal photography, education wasn’t the way forward for you. And obviously that’s worked out in many ways. Maybe you want to share with the listeners or readers, um, about how you use miniature figurines in your work? You’ve used miniature figurines before to start some of those conversations. Want to talk about that?

JT: Yeah, sure that’s my series called Indians on Tour. And it really began when I came to Ottawa for the first time in 1992 to see the Samuel D’Champlain monument. And a friend had told me that there was a lovely you know, full-size Indian figure kneeling at the base of the monument. So we came up to Ottawa and checked it out. And it was interesting because I waited for all the tourists and that to leave. And then I went up to the Indian figure. And for some reason I felt motivated and talked to him. Like I would treat him like I was going to photograph – like a living person.

And the last thing that I asked him, I said Where would you go if you could leave this place?

And it set off all kinds of questions about, like, What would a 16th century Indigenous person, how would they respond to the 21st century? And it’s like in one way, we’re still dealing with the same issues that um, he would have to had dealt with moving into a city. And that same kind of political stuff going on. And so when he was finally removed in 1999, it was a protest by the Assembly of First Nations in 1996 and they threw a blanket over the Indian figure and said, cited, reasons for his removal.

[00:27:05] And it’s really interesting now to look at how this predated what’s going on in the US with a civil war monuments. And, but at that time they went into conversations with the um, with the National Capital Commission. And decided that they would remove the Indian figure and when they finally did it in 1999, it was moved just across the street from the Champlain monument. And um, so he was, he kind of, I felt obligated to begin looking at, Where would he go now? And it just happened that um, that my friend Ali Kazimi who made a film about my work called Shooting Indians: A Journey with Jeff Thomas, introduces the film with a plastic cowboy and a plastic Indian to set up the direction of the film

So at the time he sent me a box that had the figures inside of it, with a little note that said “You’ll probably find something interesting to do with these.” So I took one out with me and walked around Ottawa and found a place and put him next to a statue with the Indian hunter in the background and photographed it. That was the first one in uh, 2000, that I made. Using one of those plastic Indian figures.

And from that point on it began to evolve into a larger project. I stated taking these figures with me wherever I travelled. So if I went to Switzerland or Paris or London, if I went anywhere in the U.S. or in Canada, I would take them with me and uh, photograph them in different locations. And the idea behind the title for Indians on Tour was a reference to the Buffalo Bill Wild West shows in the late 19th century when he had had a cast of Lakota Sioux people that he would take as performers. And they travelled all over the world, and I had seen photographs where they were photographed like in a gondola in Venice and things. And I thought yeah, this is how I want my plastic Indians to look as well. 

Calling into question removal, absence of Indigenous people from particular spaces, um … Where Have They Gone Now? was another title that I worked with. Kind of referencing the tourists that would come and want to see “authentic Indians.” And um, and it also kind of in a way repopulated the landscape. Cause we lived everywhere before Europeans arrived. And so who knows how much activity was going on where I live in Ottawa. But I wanted to say with those figures that we have been to all these places.

I had – I’ve had several exhibitions with them – and one time somebody came up to me and said, “I looked at the images and I didn’t know whether to cry or laugh.” And I said “That’s perfect, because you can do both.” And that’s how I feel when I make those photographs. 

But it’s a form of empowerment as well.

[00:30:10] It’s um, because there’s so little for me to photograph that is Indigenous-related, there are so many Bank of Montreals, so many statutes, so many monuments that can be photographed that have Indigenous content. This gave me a way to play with presence. So when people look at them I want them to be aware that an Indigenous person is photographing these figures in these particular places. What does that say?

And so it’s really not about having the answers, but it’s just about positioning the question that people can, if they want to, begin to find out more about.

And with that in mind as well, the use of uh, of websites is a way for people that want to know more, can actually go to my website and find out um, the history behind different locations and things like that. So over time I also began to expand, and I would find new figurines that I would begin to use, and some that are larger and more elaborate and that. So there’s a whole cast of figures that I’ve used over, since [the year] 2000 so, it’s turned into I think probably one of my favourite series that I do. Just simply because it’s so much fun to do in finding places, and then to watch people’s reaction when they see a printing of this Indian figure on a, on a tripod and then photographed. And it’s just like – what’s going on here?

Um, but that’s the thing that I love about it, it’s being able to do that. So it’s just to say that these are all still works in progress but that’s the idea is that at some point, um, where’s the apex for all of this work? And I don’t know yet. But it’s coming soon. Um, it has to! [laughter]. I’ve been doing it for so long, you know, it’s like at some point you wanna just relax and move on. But, it’s just so compelling. You know? It’s hard to give it up, so.

KB: Mm. That’s fantastic and we’ll definitely link to your website in our show notes so that everyone can—

YK: I assume listeners will be keeping an eye out for the Apex, whenever that happens [laughs].

JT: Yeah. Well, I’m working on a, on an exhibition for um, uh, here in Ottawa at the Ottawa Art Gallery. And I think it’s 2022 and so I’m hoping that at that point, that’s when it’ll take place that everything that I’ve been working on will finally coalesce and come into focus as one major statement about what I’ve been in pursuit of. So hopefully it won’t be too much longer.

YK: Fantastic, I’ll be sure to come down to Ottawa for that. I’m hoping by that time we’ll all be able to travel safely.

KB: Hopefully!

YK: and experience the world and each other in person again.

KB: I wanted to ask you Jeff, is there anything that we haven’t gotten to yet that feels important for you to share in this space that, um, is on your mind or your heart that you wanted to share?

[00:33:20] I was…one time I gave a keynote address and it was on reconciliation and they wanted me to talk about exactly that. At that time I was thinking about, Well what does that really mean in terms of Indigenous people? It’s not us that have to reconcile colonialism, but I think what I’ve always felt is how do we begin to do it ourselves within our own families? And my focus began in Toronto on Queen street in 1984 when I photographed my then-7-year-old son Bear on Queen street in front of a tag on Wallace, Cultural Revolution. And that photograph set in motion, it began with the idea that I saw it as kind of a ritual in a way of my father/son relationship and having my son involved in what I do because I was never like that with my own father. And it was a way of, it really was a way for me to continue to keep working and thinking that I’m doing this for my son. And empowering him along with his mother, who’s an actress Monique Mojica in Toronto, we’ve both given him that sense of empowerment that we found over the years uh, within our own lives. 

I really believe that his success is a result of that, of being Bear Witness of a Tribe Called Red, and the success that he’s had with that, and it’s been a wonderful experience seeing my son grow in that way. And I think you know, really, that’s the bottom line for me in my, in what I do and the message that I want to convey is that um, how do we treat our children? And it’s not always easy, you know, it hasn’t been easy for me to do what I’ve had to overcome, things that I’ve acquired from generations of uh, negative behaviour in our family. But it’s possible. And I think that’s the message that I really want to convey with my work; of course I’ve overcome my disability and different things along the way, but I think the bottom line is having a son and being responsible for him. Is how does he become a part of this process as well? And so what I know, even if my career ended today, that what I wanted to be able to do is carry on in my son. And he’s doing that. And he’s doing it for the right reasons as well. Which I find is so important.

And that’s, I think really that’s, that’s the message that I wanna leave people with.

[00:36:10] KB: Thank you. That’s beautiful!

Yeah, it’s really lovely note to wind down on. Um, as Yousef was saying we always end with the same two questions with our guests on this show. So first I would ask you just because as you mentioned we are recording remotely over Zoom. We’re still in this pandemic, so, what has your life looked like during Covid-19 times if at all different, or …?

JT: Yeah. That’s a good question because I found that um, when I’m asked that I usually say that I didn’t even notice it. Primarily because I’m a hermit by nature. And I’ve needed to sit down and just work and go through everything that I’ve been able to produce over all these decades, and um, and then…what does it all mean? And I’ve been able to clean up my computer in that sense of going and doing the things that I could, I never had time to do before. And of course, you know, with the Zoom and that, and Facebook and things, you can still stay in touch with people you know, I’ve gotten comfortable being on Zoom. And um, and it’s worked out well. So, no, it’s uh, I mean it’s a terrible situation that we’re in. And that you know, I know that there are people out there that have to deal with you know, really bad issues in terms of sending their kids to school and this and that. But you know, I’ve been fortunate in terms of being self-employed and working at home that I just, I just turn it into something that’s been more of a positive in terms of yeah, now I can get some work done.

KB: That’s great. And um, yeah, there’s been lots of access elements that have come out of this new world we find ourselves in for sure, as you mentioned.

Um, and lastly, Jeff, I would ask you, what is bringing you joy right now? Lately?

JT: Oh … [laughs]. Hm. That’s, that’s uh … that’s a good question. I’ve never really thought about something like that before. I think … I think it’s really about how things, you know, there are certain moments in our lives everything seems to come together. And you can’t make that happen. It’s, for me, uh, I think coming back to Bodies in Translation and this joy has really been finding how it is to work with other people. Like I have a coordinator now that I could afford to hire for this project, I have the technician that I can work with, and I, I am looking forward to winter in the sense that we’ll be figuring out how to develop a storyline and go on and use video and different things and what we’re gonna do next with this project.

And I think that for me that’s what I’ve been finding.

[00:39:10] If you stick around long enough everything falls into place. And it seems like that’s what is happening right now, there are just so many things that can be done and used, and new technologies and that, that I find that there’s a lot of joy that goes into that because the work is my life. And, and now I can, I guess I figured out a lot of things at this point. It’s just going into the work and its starting to make sense. It’s not like, you’re writing something, “Wish I knew what to write, I can’t write anything,” but now I sit down, and I start writing and yeah, there’s something to write about. It’s something that my Elder had said to me when I was a teenager, because I used to sit around at the table when they would have visitors come over and listen to the Elders talk and their stories and that. And one time my Elder said that someday, Jeff is going to tell his own story, not our story.

So it kind of was burnt into my mind as a mantra. And what is my story? And uh, why won’t I be telling their story? It’s because generations have new responsibilities and I feel that I’m fulfilling mine, you know? I made a vow when I was a young boy that at some point I would be able to do that, and I would come back and I would show my Elders what I had done. Of course I can’t do that because they’re no longer here, but it doesn’t matter because it stays in your mind and you continue to use it even if they’re no longer here in a physical sense. And there’s a lot of – a lot of joy in all that. So. Yeah. It’s worked out.

[Jazz music playing]

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, and supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview, we release new episodes every Monday wherever good podcasts can be found.

[Jazz music fades out]

[Ends: 00:41:30]

Cindy Baker portrait

Crip Times Episode 4: The Cindy Baker Episode

This week, Yousef and Kristina are joined by Cindy Baker, a contemporary artist whose work engages with queer, gender, race, disability, fat, and art discourses. We recorded this episode in the summer, but we think you’ll find it really speaks to the end-of-2020 burnout that many of us are collectively experiencing. 

“The piece is an opportunity for me to let the public see an artist who is working hard at resisting the impulse to work hard.”

Cindy describes herself as feeling ‘wobbly’—how relatable. She tells us about her work “Crash Pad,” how she resists the notion of productivity, and how the pandemic has brought to light some things that disabled folks have been advocating for years. The conversation ends with a reminder that self-indulgence is something that can only ever be positive. 

As a content warning, the episode contains a brief mention of Cindy being abducted as a child from minute 38:00 to 41:00.

CRIP TIME’S FAVOURITE QUOTES: 

“I feel like I have better skills for dealing with this kind of thing—the pandemic—and what it does to our brains and our bodies, because of the fact that, as disabled people, we deal with these kinds of pressures all the time.”

“These are things that Crip folks, disabled folks, have been advocating for a really long time. Things like remote work, things like captioning and digital meetings etc. so forth, and now they are being seen as essential because also disabled and non-disabled need them. And it’s kind of just interesting that this pandemic has shifted the way uh, we view needs in terms of serving folks in isolated spaces which there had been a lot of disabled folks who were then isolated due to ableism in our society long before this pandemic started.”

“The piece is also an opportunity for me to let the public see an artist who is working hard at resisting the impulse to work hard.”

“I think I push against the notion of productivity very hard in my work. And I really think that our neoliberal society expects a certain kind of productivity out of us. Their definition of productivity really has to do with making the capitalist machine run. And so notions of self-care are not actually about taking care of ourselves, but are about ensuring that we continue to be productive cogs in the machine. So in my work a lot I do push against the idea that we shouldn’t be cogs in the machine at all. And I ask people to question what productivity is, why there is an imperative to be productive, and how that’s actually damaging for our bodies. And not just damaging, but in fact because we sort of not only have this neoliberal imperative to be productive, but that there’s a moral imperative as well that has become a moral imperative in our society and that means that um, to be productive is to be good. To be healthy is to be good. Is to be um, is to be a good person and a person who is not just healthy, whatever you know, however you want to define ‘healthy’ and ‘abled.’ But also beautiful, because beauty is equated to health and productivity in our society.”

“So everyone who fails at being a perfect standard of beauty but perfectly abled person in all of the ways that that’s defined is actually seen as lesser than, less productive, less valued in our society.”

“I just want to start really quietly and say This is me resisting, you’re witnessing me resisting and it’s valuable. You can see, at least on one little level it’s valuable.”

“And I want to make do but I also don’t wanna have to make do. I want to make. Um, and I want to continue making and I don’t want for us to equate, especially as disabled artists, I don’t want us to equate the way people are cobbling together provisional exhibitions with the way that we should be working as disabled artists. Like, Oh this is easier for us, we can stay home or stay in bed and we can program virtually through Zoom. I don’t want that to be the default, like … it feels like second best, and I don’t want the way we work to be considered sort of equated with that sort of second-best way of programming.”

“I feel like this work is very selfish and self-indulgent, but I never use those words in ways that are less than, uh, absolutely positive things. I think as artists we should be self-indulgent, and we should be selfish and we should be making work that is absolutely, uh, interesting and fascinating to ourselves. We should be making work that’s relevant to ourselves and our communities.”

“So, I’m indulging myself especially through the pandemic in doing work that’s uh, interesting primarily to me. And I think what I’ve learned through my practice over the past couple of decades is that if it’s something that uh, is compelling to me that I make well, it will be compelling to other people.”

“Like what if this is for me, what if I am talking to people that are important to me, what if I’m talking to people that are also resisting. Um, what if we stop looking at ourselves as uh, people that need to contribute and start looking at ourselves as people that um, that need to uh … I don’t know, that need to be there for each other and that need to be there for ourselves and that self-care doesn’t necessarily have anything to do with being productive for anyone else besides ourselves.”

Full Transcript

Narrator: You’re listening to a Wheels on the Ground Production

[Jazz music playing].

Yousef Kadoura [YK]: Hello, and welcome to the fourth episode of Crip Times.

Kayla Besse [KB]: Today on Crip Times, we are joined by Cindy Baker, an interdisciplinary contemporary artist with your hosts, Yousef and Kristina. 

Kristina McMullin [KM]: Cindy, thank you so much for being with us today and being a part of this podcast project that we’ve been working on. We’re so excited to be able to share you and share your practice with our listeners and our community. So for folks who might not be familiar with you and your practice,  if you could just introduce yourself and talk a little bit about your practice that would be amazing.

Cindy Baker [CB]: Great, thanks Kristina! I’m a contemporary interdisciplinary and performance artist. Which basically, the shorthand version of that, is I make things, and I do stuff. I, the slightly longer more involved version is that I have a research-based practice that covers a variety of mediums and uh, genres so I circle between arts, humanities, and social sciences. And I work with all different kinds of materials and techniques um, from low craft to digital fabrication to performance. Um, and sort of think of my ideas as the primary medium or the concepts. So I wouldn’t necessarily call myself a conceptual artist because my work is very material, but, but focusing very much on ideas and concepts.

Kr: Amazing. And obviously we are in the midst of a global pandemic that is kind of impacting Crip folks, Crip body-minds in ways that it isn’t impacting, uh, non-disabled folks. I guess the question I want to ask you is about you and how are you today? How is your body-mind today, and how are you dealing uh, with this pandemic that we find ourselves in?

CB: Yeah. Um … my mind is a bit wobbly which has uh, come to be my new normal, at least for now. Um, although wobbly is kind of a state that I wobble in and out of normally. Um, it’s summer which is a little more difficult for me too because the heat isn’t so great for my brain. Um, so today is one of those days that, that um … I’m a bit uh, off kilter.

[00:03:05] Um, I find though, and you may agree with me or not, we’ll see, but it’s an interesting conversation to have that I feel like I have better skills for dealing with this kind of thing, the pandemic and what it does to our brains and our bodies um, because of the fact that we deal with um – as disabled people – we deal with these kinds of pressures all the time.

Kr: This is the conversation that’s being had in a lot of Crip community. Not only do we have better skills in how to navigate things like isolation, but also that these are needs – in our society, these are things that Crip folks, disabled folks, have been advocating for for a really long time. Things like remote work, things like captioning and digital meetings etc. so forth, and now they are being seen as essential because also disabled and non-disabled need them. And it’s kind of just interesting that this pandemic has shifted the way uh, we view needs in terms of serving folks in isolated spaces which there had been a lot of disabled folks who were then isolated due to ableism in our society long before this pandemic started.

CB: Yep. Absolutely. 

YK: So you spoke a little bit about, or well, you used the term um, ‘wobbly’ to describe like, kind of a place that the heat’s put your brain in and like also uh, well – I guess you’ve spoken a little bit about the environment and like what’s happening and the way in which our bodies are reacting to the pandemic and things like that. I find that really interesting, because I’ve seen that reflected in your art practice or what I’ve seen of your art practice. Um, thinking back to the piece that you had at Tangled, I think, in 2017 or 2018? 

KM: End of 2017. Yeah.

YK: Yes. Yes. I was wondering if you might be able to share a little bit with our listeners about what that piece was, to give a little bit more insight into your creative practice.

CB: Sure. So the project that I did at Tangled is called Crash Pad. And physically the work that you would see in the gallery is a large bed that’s shaped like a pill packet. It’s about 8 feet across, so if you can imagine a little blister packet with a pill in it. It’s kind of that plastic foil with a little bump in the middle that the pill rests in and a piece of foil that you either peel back or push the pill up through.

And for me, it was kind of a portrait of my favourite pill. 

[00:06:04] In the middle of it instead of a pill there is a mattress that’s shaped like a pill. So this bed becomes a prop for me to have a relationship with this uh, pill that I sort of, for the purpose of this performance, consider a lover. So it’s both the lover and the bed. And I use it um, to be able to interact with it and to allow the audience to see me and my relationship to my bed and my relationship to my medication and how I interact with it. 

The piece is also an opportunity for me to let the public see an artist who is working hard at resisting the impulse to work hard. 

KM: Amazing. Um, so Tangled, as a lot of people do know, um, is a Disability arts gallery. In your own words can you describe what you believe Disability arts is?

CB: Um, sure. To me, Disability art is, at its most basic, any art made by people with disabilities of all kinds. I don’t think it necessarily used to be that simple of a definition, but I think where we’re at with it is that anybody who makes art that uh, is disabled can claim themselves as a Disability artist, whether or not the subject matter they’re using actually approaches it in a really direct way. Um, and I think that’s, for me, exactly because of the fact that everything that we do as disabled artists comes from the lens of you know, seeing things through our experience as people who are affected by disabilities.

KM: And what would you say is the importance of Disability arts within the broader arts sector within Canada and within the global society? 

CB: I think uh, disabled people need to see their experiences reflected in the culture. Um, and they need to see those experiences um, as, as made by people um – who are affected – uh, not represented by uh, people on the outside. And I think all marginalized peoples are going through the same um, sort of revolution right now. You know, we want our representation to be by us and for us, and we want people to see our experiences, and hear them through our own voices.

[00:09:00] YK: What do you think of the notion, or rather how does your art come up against the notion of a good body being a productive body? 

CB: Yeah. Um … I think I push against um, the notion of productivity very hard in my work. Um, 

and really think that our neoliberal society expects a certain kind of productivity out of us. Their definition of productivity really has to do with making the capitalist machine run. And so things like um, notions of self-care are not actually about taking care of ourselves, but are about ensuring that we continue to be productive cogs in the machine. So in my work a lot I do push against the idea that we shouldn’t be cogs in the machine at all. And I ask people to question what productivity is, why there is an imperative to be productive, and how that’s actually damaging for our bodies. And not just damaging, but in fact because we sort of not only have this neoliberal imperative to be productive, but that there’s a moral imperative as well that has become a moral imperative in our society and that means that um, to be productive is to be good. To be healthy is to be good. Is to be um, is to be a good person and a person who is not just healthy, whatever you know, however you want to define ‘healthy’ and ‘abled.’ But also beautiful, because beauty is equated to health and to productivity in our society.

So everyone who fails at being a perfect, um, standard of beauty and a perfectly abled person in all of the ways that that’s defined is actually seen as lesser than, less productive, less valued in our society. 

YK: I, I agree with you wholeheartedly. It also brings up though I think, um, there’s also though the ableist notion of um, “Good art comes from Mad, from suffering, or from disabled people’s suffering.” So what is your response then, and juxtaposition to that as well as the, you know, [imitating chanting] Self-care! Self-care! crowds? What’s, where … yeah?

CB: Yeah, not only does good art supposedly come from suffering, um, but that the best artists are pushing themselves constantly, right? So there’s good art coming from suffering is sort of a mental, uh, an idea of mentally what we’re supposed to be going through as artists. This sort of anguish and uh, and sort of mental instability possibly. Putting ourselves emotionally in a place that’s very damaging. 

And then on top of that, pushing our bodies and struggling in a way that um, that pushes our bodies to the limit in ways that uh, impact disabled artists more than they would impact artists without disabilities, or more able-bodied artists, however you define that. Especially as a performance artist, I see performance art, the ‘better’ the art in theory, the more somebody is really having art that takes a toll on their body. They’re struggling, they’re bleeding, they’re sweating, they’re um, holding up massive weights or putting themselves through trials and tribulations that um, that sort of quote “normal bodies” would have a difficult time withstanding. So disabled artists, obviously we’re coming from a place where maybe we can’t withstand, or aren’t able to do some of those things at all to begin with. So what does that mean about me as an artist? Am I a failure as an artist before I even begin?

KM: What are some ways you build this resistance into your practice? Not only the like, making of art but also the performance of your work? Like what are some of those ways in which resistance is integral – er, what are some of the ways that resistance is brought in on like the grounding effort? 

CB: Um, wow that’s a good question. Um, I think I try to build my art to be accessible on many different levels for the audience. One of the most basic levels is that people can understand what they see, like on a really basic level. Um, so with Crash Pad for instance, people see me in a very vulnerable place even when I’m just sleeping in the gallery, what they’re seeing is something that they absolutely can’t deny is impactful or vulnerable or, or beautiful, however you might define that.

And so right away, people say ok, maybe this is good art or maybe this is something worth looking at. Um, and at the same time I recognize that what’s happening is not productive in ways that I’ve been led to believe uh, productivity should act.

[00:14:58] So there’s a question right away at the beginning, right? I don’t necessarily have answers, I don’t necessarily have a big statement that I’m trying to make with each work. I’m hoping that those statements build and that if you’re following my practice, or if you’re following Disability arts, or if you’re following people with the same ideas, that it starts to build. That your idea of this resistance really starts to build.

But for one, I just want to start really quietly and say This is me resisting, you’re witnessing me resisting and it’s valuable. You can see, at least on one little level it’s valuable.

KM: Are there any times – and this might be a little bit of a vulnerable question, so we can move on if you don’t want to answer it – but are there any times that you’ve had to surveil your own thoughts and your own practices that maybe you are, um, judging yourself in a capitalist or a productive way? Are there times in which even with the best of intentions you still see yourself falling into a capitalist notion of productivity?

CB: Oh absolutely. All the time! All the time. Because as much as I sort of feel like I’m looking through the world with a critical lens I also recognize that all we can do as people is look at the world through the lens that has been given to us by society, right? I’m looking at the world through a lens of someone that is critical of what my abilities are, that is you know, everything that I’m criticizing is a part of the lens that I’m viewing culture through. 

When I perform Crash Pad, when I perform any of these works that are meant to be a way for me to resist productivity or resist uh, capitalism, all these things, I still have the impulse to perform and to be a good body and every time I make a new performance I think oh this is very thoughtful and it’s very intellectual and uh, it’s very smart. And then I do the work and I’m like Oh my God, it’s very physical. First of all, I forget that it’s physical until I make the work, until I do the work. 

And then I find myself trying to like, because I recognize that it’s physical I’m like Ok, let’s lean into the physicality and let’s figure out how to make this work given that it’s physical and you’re constantly fighting against that urge to perform, capital P with quotes around it, “Perform.”

KM: Um, so we talked a lot about how your work is influenced by anti-capitalism. I was hoping that you could expand upon how anti-capitalism works in tangent with other anti-capitalist uh, politics, much like a Crip politic, a Queer politic, and a Fat politic.

[00:18:03] CB: Sure. I think as an intellectual I have a grounding in Queer theory and Disability theory and Fat Theory as well. So, so a lot of my um, a lot of my language, a lot of my politics come straight at a very theoretical and uh, political lens. Um, and I think all of those theories are by nature anti-capitalist and anti-corporate and anti-neoliberalist. Um, I mean … to, maybe this is a bit of a blunt weapon, but I think that intellectualism and academia in general are very anti-capitalist and that it’s very difficult to be an academic or an intellectual and still toe the line of a capitalist society. Which is I think why um, intellectualism is so dangerous to capitalism. 

Uh, I’m not sure how to talk about those things specifically and how they intersect, um, except to say that um, that as I was talking about before of cogs in the machine, Disabled people, Queer people, Fat people, we don’t fit the moulds of the cogs that are needed to make the machine run. Any time that we try we trouble the machine in any way, it’s running less efficiently, and so capitalism is constantly trying to smooth out the edges and anybody in the margins just doesn’t fit and either you become moulded to fit and you start um, living a life that tries to shoehorn your body into that machine or you find yourself on the outside of it.

YK: Yeah. Um, and speaking about like the cogs of capitalism, it seems they have been gummed up a little bit recently um, by the you know, current pandemic that we are collectively living in. How has the pandemic and sort of what’s happening in the world, um, impacted your art process and what you’re creating and doing with yourself now? In, in you know, these times. These weird items that we find ourselves in.

CB: Yeah. Um, I think like we talked about earlier in the interview, because my brain, because my mental processes have been affected that has had one of the biggest impacts on my artistic process.

[00:20:58] And that’s been really difficult for me because I rely on my brain to do the bulk of the work of my practice. Um, I think I’m impacted in the same way a lot of artists are, both inside and outside of Disability arts, which is that there are fewer opportunities for me just because everyone has slowed down and had to reassess what it means to program, what it means to exhibit art. So there are a few small opportunities that have come up that are performances that happen virtually or performances that happen off-site in all these little ways that people are trying to make do, but it does feel in a lot of ways like currently making do.

And I want to make do but I also don’t wanna have to make do. I want to make. Um, and I want to continue making and I don’t want for us to equate, especially as disabled artists, I don’t want us to equate the way people are cobbling together provisional exhibitions with the way that we should be working as disabled artists. Like, Oh this is easier for us, we can stay home or we can stay in bed and we can program virtually through Zoom. I don’t want that to be the default, like … it feels like second best, and I don’t want the way we work to be considered – sort of equated with that sort of second-best way of programming.

KM: So then, I’ll go back to a word that’s come up a lot in this conversation, resistance. How do you resist that notion, that this work would be second-best?

CB: Um, that’s a good question! Um, I have been saying yes to opportunities as they arrive because opportunities are opportunities and so that doesn’t feel much like resistance, but I think the ways in which I do engage, um, I continue … I guess I’m refusing to make work that compromises the way that I make work. And so if I’m offered an opportunity to program off-site or online, uh, or any sort of virtual way of programing, I insist on doing what I need to do. So I’m doing a performance, um, that involves me um, basically kind of ignoring the audience while I do what it is that I do. And I’m refusing to mediate that in a way that makes it easier for people to digest because of the fact that it’s mediated a little bit, um, like, I just … I can’t allow the art world to claw back the ground that I’ve gained as a disabled artist in, in some of those resistance forms, those ways of refusing productivity.

[00:24:08] So I just, I’m staking my ground. I’m staking it out and uh, digging in. 

KM: Amazing. And then in earlier conversation that you and I have had you spoke about a project that is related to your dreams and sleeping, is that still something that you’re working on?

CB: I am! So, a little publishing company called Option Sector Press just put out a little book, which is my ten-year journal of dreams. And I’ve been making work about my dreams for the past couple of years, and I plan to continue making work about my dreams into the foreseeable future. Um, one of those projects … I mean, I make a lot of work about dreaming, about beds, about sleeping and they never, they weren’t tied together in any conceptual way when I first started making them, but I think through the dream work I’m trying to tie them together a little bit more. Um, I feel like this work is very selfish and self-indulgent, but I never use those words in ways that are less than, uh, absolutely positive things. I think as artists we should be self-indulgent, and we should be selfish and we should be making work that is absolutely, uh, interesting and fascinating to ourselves. We should be making work that’s relevant to ourselves and our communities. 

So, I’m indulging myself especially through the pandemic in doing work that’s uh, interesting primarily to me. And I think what I’ve learned through my practice over the past couple of decades is that if it’s something that uh, is compelling to me that I make well, it will be compelling to other people.

KM: That’s amazing, yeah. I think the idea that being selfish and self-indulgent is a bad thing is a really flawed notion. Because I think that when we are creating work whether that’s in our jobs or in our families or in our communities that is rooted in serving ourselves, that can overflow into a service to our communities and also remind people that they can also be selfish and self-indulgent in a really positive way. I think it’s a really good point that when you create work that you want, like, that’s going to have value.

[00:26:55] CB: Yeah.

KM: Inherently.

CB: Yeah. And I think it’s another mode of resistance to not constantly be saying like, How is this work, contributing to society, how is this work selfless and what am I giving to the world and how am I uh, being productive for this machine that we keep talking about. This capitalist or neoliberal machine that I’m meant to be a part of. Like what if this is for me, what if I am talking to people that are important to me, what if I’m talking to people that are also resisting. Um, what if we stop looking at ourselves as uh, people that need to contribute and start looking at ourselves as people that um, that need to uh … I don’t know, that need to be there for each other and that need to be there for ourselves and that self-care doesn’t necessarily have anything to do with being productive for anyone else besides ourselves.

YK: I was going to ask you what advice you would have for um, emerging artists who find themselves in similar, who, who, who are also finding themselves you know, in that place of you know, people who are just out of school or things like that. Or coming from academic institutions going into the art world who are coming up against all these things that you’re speaking about. But I kind of feel like you just answered it for me with that, so.

CB: I mean, I like to tell, when young artists ask me about my practice and about how to be um … how to make work that is uh, a little bit more open-ended or work that is resistant … um, but without knowing what the answers are, like none of us have answers. I don’t have answers, that’s when I tell them I don’t have answers. I don’t know the way we should live, I don’t know how to resist. I think that um, I think people should be making art that asks questions. Not that make statements.

I think all the best art is by artists who go out into the world and say, I have a question and I’m curious to know the answer. And I’m going to try to find out the answer and I hope that you’ re curious enough to come with me on this journey.

KM: And then kind of on a similar vein, when you look at the Canadian art sector, what is your dream for it to evolve into? Moving forward, like in your wildest dream, what does the Canadian art sector look like? What does it feel like, how does it operate?

[00:29:55] CB: Wow. I mean right off the bat in my wildest dreams, Canadian institutions are a lot more diverse. And that’s … diverse in all respects. Um, in terms of who they employ and the kind of art that they exhibit. The kind of artists that are invited to have a seat at the table. I mean, that’s in institutions, galleries, funding agencies, schools, from the institutions that are creating artists and that are telling people what art is. And making art visible and making it viable. Um, I think all the whole, uh, sector needs a massive shaking up and I would love to see it start with diversity. Um, beyond that I, my dream is for artists to be able to um, make a living doing what they’re doing. Or at least to be able to make a life doing what they’re doing. And even if not all of us can make a living in the arts we should all be able to uh, have a life that centres our practices while we do the other things that we need to do to make a living. 

KM: So Cindy one thing that we’ve talked a lot about in this conversation, um, is the resistance of productivity, of bodies… especially the resistance that disabled bodies needs to take against the cogs of the wheels of productivity. How would you say that disabled bodies, um, are different and/or similar to the concept of a ‘failing’ body?

CB: Um … yeah, so I curated an exhibition uh, a performance evening a couple of years ago called Earthly Tents. In Edmonton, and it was from a quote … from I think, uh, Corinthians about these earthly tents, in other words our bodies, uh, being shrugged off in order to make our way to heaven. And I liked uh, I sort of liked the idea of bodies as tents. And I was trying to uh, I was trying to think of ways um, that I could start as a disabled artist talking about bodies’ failure, um, that wasn’t equated with disabled. That there’s ways that bodies can fail on able-bodied people that don’t necessarily um, put them in the realm of the disabled. So I’ve seen a lot of people taking on the word “disabled” because they have a body that’s starting to break down.

[00:33:00] And I guess I push against that a little bit; at the same time I don’t want to gatekeep the world of disability. But basically I was asked to curate an exhibition for a dance company and as a disabled artist I wanted to make work about disability and at the same time, I kept thinking about who it is that I wanted to involve, and all these people were suggested to me. You should work with this dancer; she’s getting a little bit older and her body is falling apart. And I bristled a bit at the idea that I would have to invite all of these people in that wanted to be a part of this discussion because of the fact that like “Oh, I’ve been dancing so long that I’ve developed these foot problems, or I’ve developed these knee problems.” That’s great, but that’s not the conversation I want to have. I want to talk about people with Disabilities.

So I’m going to take the idea of Disability and split it off from the idea of a failing body and talk about what it means when people who are disabled um, want to talk about their bodies as things. So we can allow ourselves to have people with um, with bodies that are considered ‘othered’ and with bodies that are considered less able, that don’t want to talk about their bodies as failing. 

And so I involved people with all different kinds of physical and mental disabilities in this project that did want to say, this is where my body is failing, and this is what I want to say about it. And it was really, and the project was really beautiful because of the fact that um, that it was uh, it was disabled people talking about their vulnerabilities and talking about the ways in which um, they didn’t have to try and pretend to have good bodies for these able-bodied audiences. They didn’t have to prove themselves as, um, as worthy of being uh, watched. And they didn’t have to prove themselves as, like, I’m good enough to perform to you. Look at me transcending my Disability for you. Um, they said Look at me and my body and what it’s capable of. And I’m going to tell you exactly what I, what I’m upset about. Or what isn’t working for me and, and I want to talk to you about the things that maybe I’m afraid of and that you’re definitely afraid of about my body. And it was a space for people to be really vulnerable in front of the people that are probably the most scary to be vulnerable in front of, which is not just able-bodied audiences but dance audiences! [laughter]

[00:36:00] KM: So when you spoke about earthly tents, you spoke about this idea of bodies as tents and for me I was kind of thinking about, what else happens when our bodies are completely, uh, at rest. When we’re sleeping, when we are sleeping and then what happens that is productive when we are sleeping, not only are we resting, but we’re dreaming. And dreams and sleep have come up a lot in your work. Um, could you talk about some of the other projects, exhibitions, curations, performances that you’ve done related to dreams and sleep? 

CB: Yeah. So I think where the dream work started for me is that I’ve been keeping these journal dreams for the past ten years. And I basically write down the dreams and then I never look back at them, it’s sort of the journal that just goes forward and generally doesn’t go backwards. I didn’t think of it as an art project when I started keeping track of my dreams, although I thought there might be something generative about it. And after about 7 or 8 years, um, I decided to read back on some of the dreams and as I read them, um, and realized that I didn’t recognise them at first. So I read a dream, I would experience it as though for the very first time as though it was somebody else’s dream and I had never read it before.

And then slowly it would wash over me the idea that this is something that I know very well, and I know well enough that it might in fact be a memory of something that really happened. I can smell the smells and see the sights and hear all of the audio of the dream and I really um, it was really affective. It was really, made an impression on me.

And so at the same time I was going through a series of, I was remembering a trauma that happened as a child. I mean, I remember the story leading up to the trauma, I didn’t remember the trauma itself. So, I was a child and I was actually abducted.

So in this trauma that happened to me um, basically I’m three years old, riding a big wheel tricycle and these two older boys start taunting me. It was, it was a very powerful event that I remember very clearly. And I didn’t realize until my mom recounted the story to me that the memory actually stopped there. And her retelling of the story starts much later than that. She remembers the point when she realized that I was missing, she went looking for me and couldn’t find me.

[00:38:55] Eventually, found someone who saw these boys leading me in a certain direction, she went looking for me and I don’t know who all was involved in finding me but eventually they found me and her, the important part of the story for her, is that the parents said, Oh, our boys would never do this but in fact they did. So for her it was a cautionary tale about parents not believing their children could do any harm.

But for me, I realized like oh, there’s a whole chunk of my life that’s missing that I never realized. And I grew up thinking that I could not be the kind of person that ever had that kind of trauma happen to them and realizing that it had, it suddenly gave me a whole new, um, a whole new conception of how my brain works. As someone with disabilities that affect the brain, I realized that I have a lot more thinking to do about my brain and how my brain works. 

And so I decided to take this catalogue of dreams and see if I could use it as a way to try and pull up memories from the past that have long been forgotten, by pulling these dreams out to the surface. Pulling out memories and trying to revisit traumas and see how I might be affected. How I might be changed, how my world might be changed by bringing these things back that have been long buried. 

KM: Wow. That’s beautiful. Thank you so much for sharing this personal part of your life. Are you working on dream work right now? Or is it kind of an evolving practice?

CB: It is. I don’t know, I just made this sort of arbitrary decision because I had a journal that spanned ten years, that I was going to spend the next ten years making dream work. And for me, it felt like a way of removing some of the pressure of art-making if I, if I had sort of an outline of what I was going to be working on, then my brain wouldn’t have to spend too much time worrying about where the next project was going to come form or worrying about how my work fits together, and what’s going to be next and how people are going to conceptualize my practice as having these throughlines. I’m going to make this work about dreams, and I’m not going to worry too much about how it fits together. I’m just going to focus on this and really it’s about how can I be changed and how can the world around me change by revisiting these things that … I don’t know, that seem to have no value to the rest of the world, that seem to have no value even in my world.

[00:42:00] You know, we think of dreams as frivolous things that might signify something, but in fact it seems like a good way to continue my practice of resisting productivity and being anti-capitalist, by focusing on something that some people would think of as so frivolous. So I think the projects that I’m doing these days, um, really capitalize on that continued desire to resist productivity by uh, looking at a dream that I had, asking people who were in the dream to help recreate it with me and then having these really quite moments that um, an audience is welcome to participate in. But maybe they don’t have a way in in the same way that that one person does. Um, a lot of my performances I build at least one or two levels for people to engage with that um, that not everybody can. That’s maybe not for them. And that’s I think one of the ways that my Queer politic and my uh, Disability politic and my Fat politic comes into my work, is that I speak to people um, using a language that maybe the rest of the audience doesn’t necessarily have. Sometimes I’m speaking specifically to Queer people or specifically to Fat people or specifically to disabled people, and we’re sharing a moment. We’re sharing an experience that the rest of the world doesn’t have.

And the whole project doesn’t have to be about everybody, it doesn’t have to be for everybody. So I had someone approach me once and say, I get it that this work is really Queer, for example. This work is really Queer. But don’t you think you should make it accessible to me in some ways? I’m not Queer so I don’t understand this work.

And I’m like, honey, this work is not for you. 

[Laughter]

This work just isn’t for you. And I think a lot of my dream work is going to be like that, and it’s not specifically for Queer people or Disabled … maybe it’s just one person. Maybe this work is just for one person very quietly, um, and I think that in itself is uh, a form of resistance.

KM: So Cindy we’re coming to the end of this conversation, and again a massive thank you for joining us today. I know that the folks who are listening to this episode or who are going to be reading the transcript from this episode are going to garner a lot of knowledge and a lot of questions that they can ask themselves about their practice. So for anyone who is listening, who wants to get in touch with you, get in touch with your work, how can we find you, how can we get in touch with you and follow your work and your practice?

[00:45:00] CB: Yeah, my social media handle, Instagram and Twitter are @CindeBee, that’s C-I-N-D-E-B-E-E. My Facebook, where I spend a lot of my time these days is Love Cindy Baker. And my website is cindy-baker.ca.

KM: And the last question on all of our Crip Times episodes, is what has been bringing you joy recently?

CB: Water. Water has been bringing me joy because I’ve spent a lot of the summer in water. I have, I’ve been in Ontario for the summer, which is uh, not where I usually find myself as a Prairie-based artist and I have access to a swimming pool that I use almost every day and I’ve been swimming in lakes almost every day. And I can’t even begin to tell you how much joy I get being in.

[Jazz music]

KB: Crip Times is presented as part of the Wheels on the Ground podcast network. This podcast is produced by us, supported by Tangled Art + Disability and Bodies in Translation.

If you enjoyed this interview we release new episodes every Monday wherever good podcasts can be found.

[Jazz music fades out]

[Ends 00:46:49]

 

Image of Ben Barry

Crip Times Episode 3: The Ben Barry Episode

Everybody gets dressed—but how can fashion be a tool of social justice?

This week, Kayla and Kristina sit down with Dr. Ben Barry, Chair of Fashion at Ryerson University. We talk about how we can imagine fashion beyond ‘the ideal body,’ how Ben and others are working to diversify fashion education, and how we can crip fashion, meaning create desirable clothes made by and for disabled people. We speak about how a co-created relaxed fashion show came together through education and Instagram prowess, how Ben’s current research project, Cripping Masculinity, has adapted during COVID-19, and how access to fashion is access to life: to employment, community, desire, and safety. Ben talks about who he looks to in fashion justice leadership. We wrap up this conversation by noting how joy is found both when we take off our shoes, and when our institutions make systemic change. 

“Fashion has been appropriated, misrepresented and misused as a result of colonization and slavery. Fashion is really about telling stories, telling histories, living in our bodies, building community and relationships. That’s the role of fashion and has been the role of fashion since time immemorial on the land that I’m on, which is Indigenous land.”

Curl up with your favourite quarantine attire, and prepare to ask yourself some deep questions about how and why we all wear what we do.

Image description: A colour photograph of Ben Barry speaking at a podium at Ryerson University is centred on a pink background. Overlapping the photograph is large, right-justified blue text that says ‘Ben Barry’. ‘Ben’ is in all capitals and ‘Barry’ is in all lowercase letters. At the bottom of the image is the Crip Times Podcast Series logo. The image was designed to evoke a vintage floppy disk, with bold, rounded text, and a lighter blue box containing the logo. Photographer credit: Arthur Mola 

CRIP TIME’S FAVOURITE QUOTES: 

“Fashion has really been appropriated and misrepresented and misused as a result of colonization and slavery. Fashion is really about telling stories, telling histories, living in our bodies, building community and relationships. That’s the role of fashion and the role of fashion in time in memorium on the land I’m on is indigenous land.”

“So many of us feel just really intimidated by fashion and I think really, and rightly so, hostile to fashion because it’s been such an exclusionary force.”

“I try to go back to what fashion always has been and what it was. This really fluid and expansive idea of how we tell stories and engage with community and think and dress and live in our bodies. That’s what fashion really was at the start and that’s I think what needs to be reclaimed when we think about fashion and social justice.” 

“How do we create a space through curriculum that is inclusive and that represents the diversity of students? How do we create a culture where people feel they don’t need to hide aspects of who they are but they can really bring their whole diverse intersectional selves to the classroom and to the studio and feel that that will be respected and honored and cared for?”

‘Liberation is moving away from a hierarchy completely and recognizing that there are a variety and diversity of bodies in the world. How can we design with bodies as they are and recognize there are going to be multiple designs?”

“And I think that’s also part of the shifting design, is how can design be about collaboration? Why are we celebrating one person as the designer, rather than designing in groups where people bring different knowledge, different skills, different ideas and they bring those together to create a collection in clothing. And not only does that allow everyone to contribute in their own ways, but that also takes a lot of pressure off one person. Results in a lot less burnout, and I think creates something way more inspiring, exciting, and useful.”

“I think I would love it if we could all dress any way we want in the world and claim radical visibility. Just be that way in the world.”

“Clothing is not… is not just frivolous. Is not just fun. Is not just about self-expression.”

“In all of my talk about fashion being creative and fun, I don’t want to deny about how clothing is also this access to life for us and that particularly for BIPOC disabled folks. So, I really think that clothing then also serves that purpose and so that’s also part of this conversation.”

“I hope we can kind of reject some of that rigid professionalization as we move forward.”

“I think justice and liberation in fashion is about creating a Crip fashion community and Crip fashion industry. While simultaneously changing existing dominant fashion systems that are grounded in ableism and able-bodiedness.”

“The approach of changing and transforming the dominant system but also refusing that dominant system and creating your own system are both necessary to bring about disability justice and liberation.”

“You need equity and liberation simultaneously.”

“My dream for fashion is that we go back to what fashion always was. A place to dress multiple bodies, tell multiple stories, celebrate multiple histories, engage with materials, and honor the land. That we recognize the harm that this capitalist colonial fashion system has caused and recognize that that’s not what fashion really was since the beginning.”

FULL TRANSCRIPT 

Narrator: You are listening to a Wheels on the Ground production. 

[Jazz music playing]

Kristina McMullin [KM]: Hello, and welcome to the third episode of Crip Times! 

Yousef: Today on Crip Times, we will be listening to Ben Barry, the chair of the Ryerson University’s school of fashion. With your hosts, Kristina and Kayla. 

[KM]: So today on the podcast we have one of my favourite humans, Ben Barry. I’ve known Ben for almost eight years now and for those eight years he’s been a leader in fashion, in social change, in just how to be a good person in the world, and I’ve had the privilege of working with him as a student and a research assistant. I’m really excited to get to share this expertise, this knowledge, this way of being in the world. So, Ben, thank you so much for being a guest on Crip Times. I couldn’t have done this podcast without having you on here and getting to share you with this community. So, thank you.

Ben Barry [BB]: Thank you for that introduction. The feeling is completely mutual. I would want to interview you on all of these themes too. But I’m really excited and thanks for inviting me on. 

KM: Amazing and, obviously, there are going to be people who don’t know you as well as I know you. So, could you introduce yourself to our listeners and transcript readers? 

BB: Yeah. Hi everyone. I’m Ben Barry. I use He/Him pronouns. I am a white settler who is disability identified with low vision. I am Chair and Associate Professor in the School of Fashion at Ryerson and my work, um, really for my entire life has been to stretch and expand the depth of the definition of fashion towards justice and liberation. 

KB: Whew. What an intro. No small order but obviously you are out there doing it so… that’s fantastic! And so, as we are recording this it’s September 3rd so a lot of us are in back-to-school mode and Ben, obviously I know that’s on your mind. So, maybe you want to talk a little bit about what that looks like in these pandemic times and how you are feeling.

[00:03:05]

BB: Yeah, I think for so many schools we’ve been faced with how to deliver a curriculum remotely. It’s especially challenging in a program like fashion, where so much of the program isn’t lecture based or essay based. Um, but it’s about making. It’s about engaging what the sense is with materials and creating. Often creating with, and for bodies, and so figuring out how we can do that virtually is an experiment. But an exciting one! So, we’ve really spent the summer sending machines, materials, equipment to our students across Canada and trying to just imagine how we can create remotely. 

KB: Wow. That’s really cool. 

KM: For folks who don’t follow you on Instagram you posted an absolutely beautiful caption kind of encapsulating what you just mentioned. What was important to you about posting kind of these intentions so public? Not only for your student, but even your community.

BB: Yeah, I wrote an introductory which I do every semester. It’s a welcome introduction in to the new year. But I think for this year there were really two points I wanted to make. The first was recognizing that moving to a remote semester is pretty unsettling and particularly unsettling in a time of global pandemic and racial injustice. So, my goal was for students to know that they will be treated and worked in a way that exercises total compassion and flexibility. In ways that recognize that working from home is really stressful. It can be really isolating. It can be pretty inequitable. And so, the expectation is that everyone does their best and recognizing that best is really different depending on your circumstance, right? Depending on your experiences your living situation, your financial security, and so many other factors. I’m really wanting to reassure people that we understand that and we are there to support them. But, also, recognizing that creative and fashion being creative work, can really move the world and so yes. I recognize we are feeling unsettled and nervous and exhausted. But how, and in what ways can we tap into this moment? To influence our work. What possibilities can our work open up? What stories can we tell? How can we move the world through what we create? And recognizing that fashion is, and can be, part of social change. And so how can we do that right now in the classroom? To move the world in a way that it needs to move right now.

[00:06:13]

KB: Yeah, I think perhaps some of our listeners or readers might be thinking what the heck does fashion have to do with social change and social justice? Fashion is often discredited, right? As a trivial aspect of society, you are something frivolous. And, so, why…. what does fashion have to do with disability arts and with justice in this moment and how might we all tap into that a little bit?

BB: I think that’s such a great question. Such a great place to start this conversation. Um, because fashion is really been appropriated and misrepresented and misused as a result of colonization and slavery. Fashion is really about telling stories, telling histories, living in our bodies, building community and relationships. That’s the role of fashion and the role of fashion in time in memorial on the land I’m on is indigenous land. But because of colonization and slavery, fashion was corrupted and tied to this idea of modernity and industrialization and seen as being born and only existing in Eu-rope. So, this sort of dominance and hegemony of a few fashion brands in Europe started to take over. Anything that wasn’t European, anything that wasn’t white was banned, was written off as simply clothing or ethnic dress or costume. Seen as something that was “tradition, historic and now extinct”. And, because of that story, fashion was then reborn in this way that was super exclusive, super narrow and super limiting. So, very few people could engage with fashion and those people who couldn’t engage in fashion did it at the cost and expense and so many other people. So many other cultures. So many other laborers and of course, our planet. And because of that kind of rebirth of fashion, in a form that was really dominating and exclusive, it’s made so many of us feel completely alienated because fashion isn’t created or designed for our bodies. It isn’t accessible at our price points; we don’t see ourselves represented in fashion whether it’s on a runaway or whether it’s in who serves as editors and designers and creative directors. Um, and it’s been used in this way really to exercise power and power over other people. And I think because of that, so many of us feel just really intimidated by fashion and I think really, and rightly so, hostile to fashion because it’s been such an exclusionary force. 

[00:09:11]

BB: But I really, and so much of the work I do in teaching and my own thinking, I try to go back to what fashion always has been and what it was. This really fluid and expansive idea of how we tell stories and engage with community and think and dress and live in our bodies. That’s what fashion really was at the start and that’s I think what needs to be reclaimed when we think about fashion and social justice. 

KM: Wow. I want to go back and do a Bachelors in Fashion Communication once again just to hear that lecture every day. 

[Everyone laughs]

KM: I don’t even know what my next question is going to be I just want to like sit and resonate on that.

KB: Yup.

BB: Yeah, it’s a lot. But I think it’s important because I think that idea of fashion has really been used to divide and to create hierarchy. Right? A part of colonial white filler project. And I think it’s so important to try to move away from that. I think what’s exciting is there is so much happening in the fashion space. It is being reclaimed and I know we’ll talk about Queer Crip designers doing that. Sage Paul and indigenous fashion in Toronto. An incredible group of indigenous designers that are fostering resurgence through fashion. And so, so, so much more. But I think part of it is yes, it’s happening in the world. But also, how can that happen in fashion school? How can fashion school and fashion education be a place where BIPOC disability identified folks that have just been marginalized from fashion feel welcomed into the space? To draw from their lived experience. Draw from their histories. From their narratives. From their bodies and create. Create clothes that really tell stories and allow other people to live in their bodies the way that they want. And so much of my work as a fashion educator is about how do we create that space. How do we create a space through curriculum that is inclusive and that represents the diversity of students? How do we create a culture where people feel they don’t need to hide aspects of who they are but they can really bring their whole diverse intersectional selves to the classroom and to the studio and feel that that will be respected and honored and cared for? And, I don’t think we are fully there yet. I think there’s a lot of work to do. But that’s certainly the journey we are on. I think if we can model that in fashion education, we can create a community world views, practices, that then bring that out into the world. Whether that’s in industry whether that’s in community or whether that’s in everyday dressing. But ways to really bring fashion back to, as I said, it always was. 

[00:12:16]

KB: Yeah, maybe that’s a good place for us to talk about how actually all three of us in this conversation have done work on relaxed performance. Um, which has its origins in the theatre world and opening up theatre and performance spaces to be as accessible as possible to as many bodies as possible. And you took on this really exciting project of bringing relaxed performance to a fashion show. Um, which is completely magical. So maybe you want to talk about what that process looked like? 

BB: Yeah. That… This all came about through, really, Kristina who introduced me to the folks at British Council at Cripping the Arts who were engaging in this really exciting project, as you know. On bringing relaxed performance to the classroom and seeing how that gets taken up in education. And so, we decided to bring this to a fashion event planning class. To imagine what a fashion show could be like if we started with accessing the foundation. So, not building a show and then adding access on as sort of after the fact. But what happens when we create and design from a place of access to start? How does that then access open up and become an esthetic? How does access become a way of thinking and doing and way of engaging? So, that was really the goal of the class and it was a class that was combined class of undergraduate and graduate fashion students. Some of them had lived experience with disability but others did not and others and most of them had never studied disability studies before. So, the course was sort of this balance of introducing them to this disability studies and Crip theory alongside fashion event planning and imagining what these worlds would look like together.

KB: And so, I know that you invited models, right? You did an open call for disabled models?

BB: Yeah, so the students were divided into teams. So, teams looked after, an overall team to look over access, production, models and casting, styling, and promotion. And thinking about Crip theory and disability justice it was really important that this show wasn’t just going to be created with students but really be co-created with community. So, the students did a call out to disability and Deaf identified folks and disability justice allies encouraging them to model for the fashion show and to help create the fashion show.

BB: And in return there would be an honorarium and a way for them to really help create this space and really just through putting a kind of call out on Instagram it was pretty incredible the response. We had twenty-nine folks ranging in all types of lived experience who participated in the show. They picked their own outfits that they felt best expressed them and told the story of who they were. And they had a chance to put together some words about what those outfits meant and how they would describe them and how they would describe themselves which was used for the audio description and also in the program. So, it was a really an experiment because this had not been done before to the best of my knowledge where a show used access as a start place – ugh. Starting point. Because of that it wasn’t like a traditional fashion show the one might imagine. With the runway and models coming down the runway and going back in this very kind of orderly fashion. Lights on the runway. Every-thing else is dark. Complete quiet. It was a space where models could move about as they moved about. The audience could move about as they moved about. Lights were similar throughout the space and really trying to imagine what could a space look like that all bodies could be in and all bodies felt welcome in. 

[00:16:34] 

KM: Yeah, and I was obviously at that show and it was so evident that folks felt welcome throughout the entire process. Not only models not only audience members but even like folks who were providing access. It was such a success from my perspective. Um, how did you feel that like a Crip politic and Crip esthetic are not only like influencing the fashion education, but really the end product your students are creating now that you kind of brought that into your leadership at the school?

BB: I think… I think the change that we’re hoping to make or I’m hoping that, you know with my colleagues and with the students, we can make is move from this idea in fashion of adaptive fashion to really Crip fashion. I think, what I mean by that is so often when we think or we see fashion and disability in the industry in the world it’s often been designed from a place of adapting. Which means that something is designed for a non-disabled body, a non-disabled user, that’s the finished product and then it’s modified. It’s shifted. It’s changed. It’s adapted for disabled wearers and users.

BB: And so, what that does (in many ways) is it one, it’s creates this hierarchy where sort of non-disabled bodies are the starting place at the top and anything else is an add on or changed from that. But it also completely limits creativity and possibility because you’ve already, like, really narrowed and limited this starting place from which we create and design. In something as fun and experimental and creative as fashion, how boring it is to do that? How uninspiring and exciting? And so, where I think I want to see movement is this place where we start with disabled bodies and disabled users and disabled experiences. That is the starting place for possibility and creativity and ways of being in the world. And we design from those places whether we are creating events, whether we are creating strategies in businesses and fashion, whether we are creating clothing. But it’s really about recognizing there’s so many possibilities and let’s start from a place of possibility and start from a place of bodies in all their diversity, rather than just starting from a place of one body and one way of being in the world. That’s really where I want to see our curriculum and the fashion industry move. Um, yeah. 

KB: Yeah, oh my god. That would change my life. You know? As a young disabled woman, especially thinking about shoes and foot wear. Oh my gosh. Like, the adaptive or accessible options for those kinds of things if you have to wear like leg braces for example were just absolutely nonexistent growing up. And even still, shopping can be really really challenging. So, that’s just one example. But, yeah. I think it would like change peoples like abilities to move through the world and to feel like good in themselves and like they have options. You know? Beyond one orthopedic pair of shoes for example. 

BB: Yeah. I think we sort of talked at the beginning of, like, when I talked about how fashion was really stronghold to this sort of one definition. Part of that wasn’t just defining fashion as European and white but defining fashion as belonging to one body, right? A thin, white, non-disabled, cis-gender body. That was the body that fashion was designed for. That was the starting place. That is a body that is fashionable. Right? That’s the top of the hierarchy. 

BB: And as a result, everything is then sort of adapted to fit quote “other bodies”. But, the fashionable body, the fashion body is still that one ideal and I think that’s really what we need to move away from. To open up these possibilities and recognize that there doesn’t, right? It’s also not about replacing this one body with another body or saying that, ‘Alright. We want to get rid of a size two model and replace them with a size 18 model as the new ideal or standard.’ 

KB: Right?

BB: It’s recognizing that all bodies are different. We need… like liberation is moving away from a hierarchy completely and recognizing that there are a variety and diversity of bodies in the world. How can we design with bodies as they are and recognize there are going to be multiple designs? Multiple clothing styles. Multiple fits. That fit the diversity of bodies that are. And I think that that’s really the movement. Obviously, we can see how that then works better for the environment. Works better for a multiplicity of entrepreneurs. Doesn’t hoard wealth with a few corporations. Like all of this really is how fashion creates economic justice, environmental justice, social justice, it’s all connected. But this is really the move and the change. Rebirth Garments is a great brand out of Chicago and their brand that is disability, size, gender inclusive. All the garments they create are custom garments based on bodies that order them and their needs. And I think Rebirth really in many ways provides a model of how… where design needs to go and how design needs to move. Their aesthetic is also about radical visibility so for them it’s really about neon. It’s about geometry. It’s about colour. It’s about spandex. It’s about claiming bodies and claiming space. Their fashion shows take audio descriptions of garments and models and mix them into, really like, into music. And to beats for the soundtrack. So, in many ways, they are path breaking. I think that’s the future of where I’d like to see fashion go and I think that’s really inspiring for fashion students, because it shows the possibilities that exist for them and where they can go. I’m teaching a course this semester that’s called design justice. Which is a brand-new course that I’ve developed. It’s a course that really is about how can students create de-signs to start from bodies where they are at a small scale. That’s about collaboration and ultimately creating designs that shift power and structure in the world. Yeah. So, it’s this really new way of thinking about design that I think works with bodies in the environment in the world. And not just in a respectful way, but in a way that even in a small scale creates this kind of transformation that we want to see. That I want to see and that many of my students want to see. 

[00:24:21]

KB: And its mind blowing to me that that’s not standard. That, you know, it’s (to my limited knowledge) it sounds like fashion education is still working to that so-called European norm. It’s re-ally, really frightening. But [laughs] yeah. 

BB: Yeah, it’s not unlike so many disciplines where we look at history or English. You know. What we teach in high school in elementary schools. We tell this sort of single history, single group of authors, single stories, rather than these parallel histories and parallel stories and parallel narratives. And I think so much particularly for fashion. Fashion education was so built on serving industry, really preparing students with the skills and the knowledge that industry had as it was, as it is. Um, so they could get jobs. Rather than seeing fashion education as a place that should actively challenge and reimagine industry to prepare students for where industry should be. Not where it is. And I think that’s the shift and that’s certainly the shift as chair at Ryerson I’m trying to bring about with my col-leagues. And I know other fashion educators are also seeing that shift. Um, I think the other thing I want to say when we are thinking about fashion and how many people really can’t find clothes for them or accessories for them. It’s also thinking about who is designing? Right. Who is creating? And how does fashion school buy its curriculum and structure and space and all of these other things, right? That are required to complete a degree automatically limits access. So automatically only invites certain bodies to become fashion students and then move into the industry. And immediately exclude other bodies from even literally entering the front door. And so, I think that that is also a part of the shift in change, is that fashion schools need to also ground all they are doing in access to invite in more students who will become the next creatives and designers and business leaders and can draw on their own lived experiences of being in the world. The lived experiences of their family and friends and their communities and create. And I think that that’s also part of this change, is that fashion education for so many reasons has been so exclusionary of who can even enter that front door that part of it then is really getting rid of those barriers and reimagining the starting place. So, the designers and creatives and business leaders who exist, reflect a diverse group of people. 

[00:27:11]

KB: Right. Because the process of fashion creation is so physical often. Right? So embodied. So, I wonder when you are talking about, like, you are sending out tools to students right now learning remotely. If there is any examples of sort of adaptive tools for creation that you’ve come across or that some of your students might be experimenting with?

BB: Yeah. Um, well so much, I think. This is a really good question. And I think one, there’s not. And a lot of that is because the industry has really, up until now, never really considered disability in an authentic and real, and I think, systemic way. Um, and I think that that’s really been a loss to the possibilities and creativity that opens up. But also, I think (again coming from this white colonial idea) that the fashion industry glorifies one designer as a genius. So, one designer creates a collection. One designer needs to be this all-knowing person who has to create a collection every season. A col-lection that will work for all different types of bodies. They get the credit, the glory, the recognition. So, fashion again is really built on this really single star system and how much pressure and stress is that on one person? A lot. As we’ve seen with fashion students and fashion designers go through, and the incredible burn out because of this single star system. But it also really doesn’t honor the possibilities that collaboration and interdependence bring us. Right? And, I mean, I think nobody knows this better than the disability community. And I think that’s also part of the shifting design, is how can design be about collaboration? Why are we celebrating one person as the designer, rather than de-signing in groups where people bring different knowledge, different skills, different ideas and they bring those together to create a collection in clothing. And not only does that allow everyone to con-tribute in their own ways, but that also takes a lot of pressure off one person. Results in a lot less burnout, and I think creates something way more inspiring, exciting, and useful. And so that’s so much of also a place we are trying to move our curriculum to. Where design isn’t seen as this single source and this single designer, but design becomes about collaboration. And so then, how does that offer more access to folks to come in and contribute in ways that work for them? And also, that shift in curriculum will also allow us to really authentically invite and welcome in more people to fashion and then hopefully more people to the industry. 

[00:30:00] 

KM: Yeah, I think what you said about Crip community really leaning into collaboration and inter-depend seems to be so true. Like, I always thought I was such an independent person. But it was just because I like to actually have Crip community and now that I work in Crip community the idea of doing something alone seems like the worst idea ever. Because I don’t have the best ideas. I think teaching students that like collaboration isn’t a negative aspect and it doesn’t seep negatively on, like, their own ideas and own agency, but really that collaboration is a way to enhance and interdependent-ness. Kind of exchange of ideas. Exchange of labour. Exchange of support. Exchange of care. It does really benefit the creative process and just your heart process.

BB: Completely. It’s such… I think a loss to fashion and the world when we value so much on this myth of independence. I think we have lost a lot and harmed a lot because of that and I think in so many creative spaces there is this value on this single artist. And what happens when we shift that? What opens up? And certainly, in my space in fashion that’s really one of the goals is I really want to move away from that myth because it’s limited possibilities but it also creates so much harm. And how can we then really start to create an interdependent environment in this design justice class? The very first assignment that I’ve created was this mutual aid and collective care assignment. Where students will work in teams to think about, um, how… how they can come up with an offering in service to the class. They can all support each other and together create sort of collective care. But all bringing something based on their own experience and their own creativity to support each other. And, as a way, really to highlight the design needs to move away from this idea that this independent all-knowing one person. It’s so self-sufficient. It can totally take care of themselves. To this idea of community care collective care and interdependence. And what happens when we can support each other we each value what we can each bring and we bring that together. So yeah. That’s sort of what I’m trying to think because I think that would make a better just fashion culture and community. 

KB: Or just a like, a better learning community for any of us. Um, if all classes started that way, I think the culture would look really really different. 

[00:33:00] 

KM: So, Ben, I obviously know that you are working on a project right now entitled Cripping Masculinity because I work with you on it. Um, and we definitely have to shift the process, given that we are all remote working. As kind of like the leader of this project… director, whatever your title is that I should know. Um, what has been kind of like the thought process for you on how your kind of readapting the process of this project. Not only for the rest of the research team but also for our research participants and the community at large.

BB: Yeah. I’m going to put – I know you are going to have show notes right.

KM: Oh Yes.

KB: Yes. Yeah. Yeah 

BB: So, in the show notes I will add a reference where I was inspired by this assignment for this amazing author from this book Building Access. And I also will add something on Cripping Masculinity for people that are interested in learning more. But this is really a project that I think aims to take everything we are talking about right now and put that into practice. It’s engaging a group of Deaf, Disability and Mad identified, Cis and Trans men, non-binary masculine identified folks in creating fashion. So, it’s about understanding their experiences in the world through fashion. It’s about dreaming up their ideal outfit that would fit their bodies and express who they are. That they would love to wear. Letting them really lead the process, but work in collaboration with fashion design students to bring that into the world and onto their body. And then produce, with them, a fashion show. Completely accessible fashion show and exhibition to tell these stories and showcase these incredible clothing that they’ve made. And that’s what the projects about it’s really the start to put into practice this new way of making fashion and highlight the role of fashion in expansively telling our stories and histories of gender and identity in all their diversity. That’s really the point and to really imagine what that is like and what that is for a variety of Disability, Deaf and Mad identified folks. So, the first part of this project was wardrobe interviews. Where we were going into people’s houses asking them to show us their clothes and talk about their clothes that were in their drawers. Hung in their closet. Where were they from? What do they mean to them? Where do they wear them? What stories to they tell? As a result of COVID and social distancing, we had to transition that online and so we are doing digital wardrobe interviews over zoom and asking people to show us their clothes, talk about their clothes, through this virtual format.

BB: And I think so far, it’s working well. But I do miss the materiality. I do miss the tactile nature of clothes. As someone with low vision the tactile nature of clothing is so important. The embody nature of clothing is so important to me. And the visual just doesn’t really capture it. I’m so interested in how clothes feel, how clothes, what they are like on the skin, how they fit the body. And so, we’re making this work to see how this goes, but recognizing that this is not going to tell the whole story. That a digital wardrobe interview won’t work for everyone. So, hopefully we will be able to go back to in person wardrobe interviews soon enough. Particularly for the folks that’s going to be better for. And hopefully by the time we do our design workshops, that will be back in person. Because it is one of these things where we talk about fashion being about community, and part of that community is being connected to bodies and being connected to the land through the tactile nature of clothes. Right? Clothes that come from the earth that are made with others and that we wear on our skin. And so, this transition is working from a ‘needing to move the project along standpoint’, but I certainly also mourn that something isn’t there and I’m excited to have that next stage and have that stage where we can engage in the tactile and physical nature of clothing again. 

[00:37:39]

KB: Yeah, absolutely. Um, speaking of clothing on zoom I know you also recently published a piece looking at how masculinity and its presentation has shifted with work from home and with remote working. Is that right?

BB: Yeah. I wrote a blog post for Gender and Society which is like a blog. It’s connected to an academic journal where I publish. Thinking about what, how clothing changes for Zoo – thinking about the body and gender on Zoom. And I think I would love if we could all dress any way we want in the world and claim radical visibility. Like, Rebirth Garments. Like their collection. Just be that way in the world. But I also recognize that that is not possible for many folks who face harassment and attack and violence and death because of their bodies and the way those bodies are dressed. Um, and so much of clothing and dressing in ways that meet social expectation does allow access to jobs, to romance, to social scenes, to life.

BB: And so, in this way clothing is not… is not just frivolous. Is not just fun. Is not just about self-expression. But it’s about attending a funeral or wedding, it’s about getting that job and earning in-come. It’s about finding a partner and accessing desire. Right? Clothing provides that for folks in the world. And particularly, particularly for folks and disabled folks who face marginalization and stigmatization and exclusion that clothing can help me ease entrench social norms and expectations. And so, in all of my talk about fashion being creative and fun, I don’t want to deny about how clothing is also this access to life for us and that particularly for BIPOC disabled folks. So, I really think that clothing then also serves that purpose and so that’s also part of this conversation. Now, I don’t remember your question and I went on a tangent.

KB: No, that’s perfect. I was just mainly just asking about that article which you chatted about. May-be you want to share what some of those findings were. How people’s sense of fashion may or may not have shifted with working on zoom and we are all visible from generally the shoulders up? What we might’ve found socially? What’s going with people’s fashion right now?

BB: Well, I can talk from my own experience that I really haven’t worn pants since March 15. Or shoes! 

KB & KM: [laugh]

BB: So, what I think this allows us to do is it allows us to do two things. I think one it allows us to wear clothes that are comfortable on our bodies that actually fit. The fabric feels good, that don’t constrain or cut off or are just uncomfortable. Really fabric and fits that work without needing to worry about these social norms and expectations that I can’t wear jogging pants. Or I can’t wear track pants or I can’t wear shorts or leggings to this particular situation, because no one will know. They are only seeing me from the head up. And so, in some ways, how does that open up, um, opportunity and possibility for folks that do not have access or that just do not have clothing that exist for them. Based on their bodies for this social context to be in spaces where normally there would be significant stigmatization or significant exclusion because at least the bottom part of our clothing is no longer being seen. 

[00:42:06]

BB: Um, but then my sort of deeper thinking was also in what ways does this with… you know if we go back in some ways to meeting in person. What ways does that entrance deeper inequities? We’re then expecting that when we are back, things are going to be the same because we think that person might be wearing dress pants or might be wearing something more quote “appropriate” for that place that we don’t even think about it. But then we come back and expect the world to be the same and guess what? There’s still no dress pants. There’s still no skirts or dresses that are available and designed for me.

KB: Structured bras? Hello! 

BB: Yeah. Right? Like all of these things. What’s then going to happen? Like, so I think then the hope in all of this is that there will be this deep learning that in some ways the pandemic and social distancing and remote working allows bodies to be bodies in their spaces as they are. And how can we then take that, rather than hide that in the home, bring that out into the world in ways that are respected and valued and just free of safety and attack? And so, I think that that’s really the hope is. That well bodies are going to dress the way they are going to dress in ways that work for them. And there’s this division between home dress and professional dress, who does that serve? Who even created that division? Right? Because if we think of professional dress, so much of that is based on this white European masculine Cis gendered male standard of heterosexual standard of dress, right? And certainly, like as a Queer disabled man I’ve never felt connected to that. I’ve always felt uncomfortable in ties and blazers but certainly when I was first hired at Ryerson, I felt I needed to wear a blazer every day to work. I needed to project that quote “authority”. That masculine authority. And as I really become more secure in my position, I’ve been able to play a lot more. But recognizing that that is really limiting and constricting and it doesn’t allow us to dress as we want to dress in ways that work for us. And if we are not doing that, then we are not really bringing our creativity and value to the spaces that we are in because we are feeling we need to play a part or hide aspects of ourselves. And then, right, that’s… there’s something really lost when we do that. And not that we have a choice, right? We’re, in many ways, we are working within these structures that exist. It’s not that we have a choice. We recognize that to quote “exist” in these spaces, this is what we have to do to exist. Um, but yeah. I’m hoping that then some of the learning of the pandemic is that we’ll just have a bet-ter appreciation that people are going to dress in so many ways and that this idea of professional dress is amazing for some folks in some bodies. They are going to dress like that on their zoom calls be-cause, yes. 

BB: But for others it’s totally not who they are. It’s not comfortable. It doesn’t express who they are. It limits who they are. And so those folks should dress in the way they want to exist as well.

[00:45:15] 

KB: Yeah. I so feel you on the blazer thing. As a young disabled woman who is very small and looks very young, I also feel like I have to like almost age myself up a little bit depending on the context to be taken seriously professional. Because if I like limp into a room my assumption is that people are going to be, ‘are you waiting for your mom?’ [laughs] Like, you know? Like, ‘oh you are the one here to facilitate this thing? I didn’t know.’ So, doing some of that signaling that way. But, yeah. Thank you for that food for thought. I think that’s on a lot of people’s minds recently and I hope yeah. I hope we can kind of reject some of that rigid professionalization as we move forward.

BB: I hope so. And I hope people that, like particularly quote “leaders” in like work places they really open up that conversation just as much as we’re hoping to have a conversation about is there going to be this hybrid between remote working? Can people actually work from home rather than have to come in everyday? I hope that conversation about quote “dress” and professional dress and what to wear also is part of that. Because that’s also a big barrier for so many folks to working in and to bringing themselves to work and even existing in that space. And so, I hope that’s part of this conversation. Because I think so many people have really found value in dressing ways they want to dress and comfortably. And what that does and how that feels on the body and how you feel in the body when you are dressed in ways that work for you. That I hope we can honor that and bring that for-ward with us. I hope that becomes a real conversation in workspaces as we move forward. 

KB: Mmhmm. And the time saved from not having to, like, perform professionalization or femininity. Like, the time it takes to get ready to go into the office versus to work from home is also huge. 

BB: Completely. Completely. And I think, yeah. And part of the conversation on clothing is also particularly for talking about a masculine work space (or a workspace that has been masculinized). Is this idea that in addition to fashion being seen or I mean you sort of said at the beginning there’s this idea that fashion has been in this sort of European thought. It’s been cast off as something that’s vain and frivolous and ultimately feminine and not masculine. And so, right, why should we care about clothing? Why should we talk about clothing? Clothing isn’t important. 

If you are even thinking about clothing in the body, right, that opens up ideas if you are thinking about body this exposes ideas of vulnerability of femininity and how does that work in organizations in workplaces that have been defined so rigidly as masculine? And particularly when the majority of leaders are men, still, thank the patriarchy and there being white men. Right? For them even to open up a conversation around clothing or what you are going to wear to dress or questioning that. It’s something that for many white straight men, white straight non-disabled men in these roles they don’t have the language or vocabulary. They’ve never been taught to do that. Then thinking about fashion, talking about fashion perhaps, or does then jeopardize a sense of masculinity, and then there’s this real nervousness and vulnerability in doing that. So, I think even having those conversation when I said yes let’s have a conversation around clothes, I also recognize that that is not always possible given these structures of gender that exist and who is in these roles and how they’ve been brought up and what they’ve been taught a leader should and shouldn’t talk about. So, yeah. I mean fashion is so integral in all of these systems and structures in many ways. That we may not often, you know, think about. But I think what we do think about and we realize it because we do get dressed. In the day. We do wear clothes. And those clothes in some way, right, whether we are thinking about what we want to wear or just about how the clothes fit and feel on our bodies right? Like that tactile experience. All of those are just part of the role clothes play in our lives and everyone’s lives in some way. 

[0049:51] 

KM: So, Ben you talked a lot today about like these big changes that we want to see in the fashion industry and fashion education. Who are some leaders that you look towards for inspiration on these changes that you would like to see in the industry? 

BB: I think there’s really two leaders that I look to. And I look to them for different reasons. I think justice and liberation in fashion is about creating a Crip fashion community and Crip fashion industry. While simultaneously changing existing dominant fashion systems that are grounded in ableism and able-bodiedness. And Sinead Burke is an incredible fashion activist, speaker, educator, who has really intervened into the core of the dominant fashion industry. 

Being on the cover of UK Vogue, with being the editor at large at UK Vogue, speaking of the business of fashion, writing prolific pieces for industry, is a disability identified woman who has advocated about the need for fashion to welcome in disabled bodies. Her work has been profound in creating conversation and creating change. When she was on the cover of the business of fashion magazine she worked with Burberry and they recreated a trench coat to fit her. And other fashion brands have done this with her for different events, for different shoots, and I think in many ways this is about teaching designers something that they’ve never done before that they don’t know and exposing the creativity and possibilities. And in many ways, she’s working with them in this collaborative and interdependent way to bring this to this new way of designing. So, it’s not only her activism as a thought leader really, but I think her activism working with designers to create clothes for her body to guide them through that process and to teach them and I have so much respect for how she does that. 

Sky Cubacub is the creative director of Rebirth Garments and I’ve talked about them before on the podcast. They have created this disability, gender, size inclusive label that is designed custom for each body that orders them. And I think what I love about Sky and Rebirth is that they are creating this Crip fashion community. Creating fashion on their own terms. Refusing the dominant western able-bodied fashion system and saying that this is what fashion is for me, for my community, and this is what I want to create on our own terms. 

And I think those two approaches, the approach of changing and transforming the dominant system but also refusing that dominant system and creating your own system are both necessary to bring about disability justice and liberation. And I think that those are really two individuals in fashion that are doing that. And I think that’s a model I really want to hold dear because so often I think, and again in this binary thinking we’ve been taught, we think that you have to either just refuse the system or work within the system. But I think that you actually need both. You need equity and liberation simultaneously. So, I think that those are two approaches to creating change and fashion that I think are going to have material impacts on disability communities. By creating clothing, by creating jobs, by creating representation, and ultimately changing attitudes, perspective, and possibilities. 

[00:54:00]

KM: Amazing. Thank you so much for all the expertise you’ve shared with us and our listeners. We like to end Crip time on a bit of a positive and uplifting note. So, we have two last questions for you. And the first one is what is your dream? What is your vision? What is your hope for the future of fashion, fashion education and the industry at large?

BB: My dream for fashion is that we go back to what fashion always was. A place to dress multiple bodies, tell multiple stories, celebrate multiple histories, engage with materials, and honor the land. That we recognize the harm that this capitalist colonial fashion system has caused and recognize that that’s not what fashion really was since the beginning. That’s not where fashion brings people joy. And that we go back to a place where we see a diversity of folks, including and centered, Deaf and disability identified folks as fashion creators, leaders, designers, and also clothes that are designed for all bodies that exist and how they want to exist. It’s a big vision but that’s really what I hope to see in my own very small little bubble. I hope that that’s what I can help make Ryerson fashion. A place where we can take that vision and maybe it’s not going to happen yet in the world. But at least in this little school and this little bubble, that’s what we can create. And that’s really my dream and my vision. 

KM: Beautiful dream. A beautiful vision. It makes me so happy. And our very, very last question before we wrap up for the morning. In these unprecedented times we’ve seen a lot of changes and challenges and we are kind of inundated with negativity and news and our surroundings. What has been bringing you joy recently?

BB: I think there’s two things that have been bringing me joy. In a very personal embodied way, not wearing shoes. 

KB: Yes. Retweet. Cosign! [laugh]

BB: It’s so nice to just let my, like, bare feet touch the floor. Not feeling constricted with socks or shoes that I usually feel. Yeah, it’s been very freeing. 

[00:57:01]

BB: And calming and relaxing and just like wonderful. I just feel wonderful in my body by not wearing shoes and socks. I love that. And that’s bringing me a lot of joy as I do everything. So, yes, for not wearing shoes and socks and I will continue doing this remote semester. I think the second thing is in all of this tragedy and really deep reckoning with anti-black racism and injustice, I feel a sense of real hope. That the injustices in the world, some of them particularly around anti-black racism, have been exposed to an audience and to people who never understood them before or believed them before or engaged with them before. That there is a real conversation happening outside of communities that were already having that conversation, in a way that has possibility. And possibility for real change. And I think now is really the time, right? To see if we are not going to let these murders that have been ongoing been in vain. Or if we are going to take that learning and really make change. And I’m trying to hold onto the hope that this isn’t going to be in vain. There’s going to be learning and real concrete action that comes from this. And from what I’ve been seeing from fashion brands that are reaching out to us, from what’s happening at the university, I’m feeling hopeful. That institutions and systems and people are making change. So, that’s in all this tragedy not joy, but it’s bringing me hope and comfort.

[Jazz music plays]

KB: Crip times is presented as a part of the Wheels on the Ground podcast network. This podcast is produced by us and supported by Tangled Art Plus Disability and Bodies in Translation. If you enjoyed this interview, we release new episodes every Monday wherever good podcasts can be found.




Renee-Dumaresque

Crip Times Episode 2: The Renee Dumaresque Episode

This week, Kristina and Kayla are joined by Renee Dumaresque, a PhD Student, writer, artist, and community organizer. 

The episode starts with a conversation around how we’ve been dealing with the isolation of the pandemic (shocker), the ways that interdependence has been deepened these past months, and how boredom can plant seeds of creativity. Renee offers us reflections on chaos and fragmentation, as well as some observations about COVID-19 headlines and ‘hysteria,’ and how they are using found poetry to offer commentary or counter-narrative. 

Renee tells us about Crip Rave Collective, how they’re working to make night life spaces more accessible, and how we can all get more thoughtful with our accountability practices.We hear a bit about Renee’s foray into film festivals, our adventures with imposter syndrome, and real vulnerability versus performed vulnerability. 

Last but not least: Are dog parks the key to being the least judgmental versions of ourselves?

Image description: A colour photograph of Renee Dumaresque, holding their left hand over their heart. Overlapping the photograph is large, right-justified pink text that says ‘Renee Dumaresque’. ‘Renee’ is in all caps and ‘dumaresque’ is in all lowercase. At the bottom of the image is the Crip Times Podcast Series logo. The image was designed to evoke a vintage floppy disk, with bold, rounded text, and a lighter blue box containing the logo.

Crip Times’ Favourite Quotes

“So, my process, when there’s not a global pandemic is uh … absolutely and utterly chaotic. And completely out of control, fairly painful. And honestly the pandemic hasn’t really changed that. Period.”

“I find that related to the chaos, my ideas often come out or even form in fragments. So, bite-sized pieces that have maybe fallen off of some larger idea. And often I don’t even know necessarily what that whole is. As the fragments are coming out.”

“So poetry, just as like a medium, is really supports that sort of like non-linear mess. Both as an aesthetic and also for me as a process.”

“But really, like, shit’s complicated always. And our thought processes are complicated, and we sometimes have to – I – sometimes have to make them appear differently. But when we are engaging in conversations about Covid-19, about medical and psychiatric violence, anti-Black and anti-Indigenous violence, these are big conversations and I think that like … the messiness is important when we’re trying to connect with one another and just imagine new ways of being together and taking accountability.”

“I saw imposter syndrome reframed another way which was if you’re in a space or relationship with folks and you feel like an imposter, it’s like, well don’t you trust them? Like whether it’s your mentor or your peers or your teacher? They probably asked you to be there. Like they want you to be there because they believe in you whether it’s your current ability or your potential to grow. It’s not an accident. It’s not like you stumbled into something – chances are, right? So if you can reframe your faith in your community and your mentors, as well, then it’s a way to kind of like reverse engineer your own confidence.”

“Q: What is your dream for the spaces that you occupy? What would you like to see in a vision in the future for art spaces, for Crip Rave Spaces, or academia or social work? What is the dream?

A: There certainly isn’t one answer for that. But there’s also not one answer for those spaces. My dream for some of those things you mentioned is that they wouldn’t exist anymore, you know what I mean? And for other things that we’d all invest in them, you know? I’m being vague on purpose there. But I think the thing that ties it together though for me, right now in this moment anyways, is listening to each other’s dreams. 

“I think that joy and wasting time—I don’t think it’s actually wasted time, but like wasting time according to some people’s standards—is such an important thing to do. And my dog really gives me no choice but to do that, actually. Cause she just wants to hang out and flick a ball, you know?”

Additional Links

Renee’s Instagram 

Twitter Account “Room Rater” Judges TV Journalists’ Home Decor. We Asked a Few About Their Scores. 

If You Can’t Stop Staring at TV Anchors’ Home Backgrounds, You’re Not Alone

Follow Crip Rave Collective on Instagram, Facebook, and Twitter. You can contact them at crip.rave.collective@gmail.com. Follow Crip Rave’s co-founder Stefana Fratila on Instagram.

Bricks and Glitter

Sick Theories

Images Festival 

Re•Vision digital storytelling 

Full Transcript 

[Sound of an electric wheelchair]

Voiceover: You’re listening to a Wheels on the Ground Production.

[Jazz music intro]

Kayla Besse [KB]: [00:00:20] Hello, and welcome to the second episode of Crip Times!

Yousef Kadoura: Today on Crip Times, we will be listening to Renee Dumaresque. An undisciplined writer, community organizer,  and PhD student. With your hosts, Kayla and Kristina. 

KB: Hi Renee, thank you so much for joining Kristina and I on Crip Times this afternoon.

Renee Dumaresque [R]: So nice to be here, so first like, thanks for having me.

Kristina McMullin [KM]: First things first, how are you? How are you feeling today? How’s the body/mind?

R: Today, I’m doing ok. I’m feeling ok. Um, I’m just sitting in this room right now, uh … that I like to call my office but really is like more of a ‘collection of junk’ room, you know, one of those spaces where you just like put everything in your life or in your place that’s been rejected from 

your life. Um …

KB: Yeah I think we all have one of those, especially working from home right now!

R: Totally. And the Zoom life is so funny too, hey? If my screen were on and you could see me there’d be this lovely bookcase behind me. And then to the front of me there’s uh, just like reality. Right? The complete wreckage.

[all chuckle]

KB: Yeah, I saw like Twitter posts where people were saying that you know, news anchors and similar were being judged hard by the background of their, what was on their bookshelves, or whatever. 

R: Amazing.

KM: So we are recording this in August, which I believe is month five or six of quarantine amidst the Covid-19 pandemic. So how, how have you been? How have the last few months of quarantine, isolation, surviving a global pandemic been for you?

R: Hm. Yeah. I mean, it’s been a really wild time. Obviously. Um, like so much sadness, and hurt, and violence. Um … I think a time that like, really has emphasized the deep social injustice that’s really always been there I guess in new ways, sort of um, coming to the surface. Lots coming to the surface. Um, not new stuff though you know? This stuff has been at the surface, um, for many people for a really long time.  

[00:03:00] Me personally, um … I’m not too bad. The people around me are mostly well. Um, my uh, my mother-in-law lost a close friend to Covid in the early months. But otherwise, people are, yeah, people near me are well. Um … yeah. It’s been an interesting past few months. Um, characterized for me and probably for a lot of people by a ton of disconnection and also matched with a whole lot of new connection, different connection. You know? Whether that’s organizing online, in new spaces, um … or like virtual stuff, just all the virtual accessibility and the connection that’s sort of made possible in new ways. Um, and then just like, connecting differently or more um, with more intention and care to a family or friends or partner. Uh, you know, for a while there I was like waking up and calling my parents every day at 7. And just hanging out uh, spending time with people um, that I care about – either on Zoom or like with – my partner watching Netflix or something. Nothing terribly romanticized or like um, sorry – nothing terribly romantic – or rose coloured, but just getting um, having space to get bored with people. And the sort of, the seeds of connection um, that are sort of planted in boredom.

Someone said that one time, and I wish I remember who it was, so if you know, please let me know right now. But that really stuck with me and jumped out to me a lot. How about you, Kayla, Kristina, how have you been holding up?

KM: I mean – this is Kristina speaking – um, it’s been interesting. Um, I live in Toronto in a relatively small but also very lovely apartment. And I think definitely going into August the like, monotony of living in the same 700 square feet for six months and never leaving, um, got a little bit heavy. And it’s just been trying to like find ways to like, shoulder the weight of that heaviness. 

R: Mm.

KM: And I think that in many years past, I would have just like not asked for support and just tried to be like independent in all of this. That I think for me in the last four years of working in disability spaces and community spaces, I’ve really learned that like when things feel heavy to like, speak on that. And like speak on when I’m feeling sad or feeling overwhelmed or just exhausted by the work of being a human, and I’ve just found having those honest conversations with my community members, um, maybe not made anything lighter.

[00:06:10] But have just made it a little bit easier to carry that weight with a little bit more support. So I’ve really felt all the negative feelings of like quarantine and isolation, but I’ve also just felt like I have the space to ask my community for help in ways that I wasn’t comfortable with a few years, even a few months ago.

R: Mm. That’s super powerful, yeah.

KB: This is Kayla speaking. Um, this year’s been real tough. Whole year’s been really hard. For personal reasons beyond the pandemic too, but um, I remember feeling at the start of the pandemic that it – that the, you know, stay home orders – felt, I remember saying to a few friends, this is kind of sometimes what life is like for me in the winter as a disabled woman, physically disabled. Where you know we have a few weeks or a month where it’s so icy and it’s so cold that I literally can’t walk down my own street. Like I’m no stranger to feeling stuck in the house, not that it makes it any easier. 

But that was really interesting to observe other people’s reactions to um, to being stuck at home. As someone who feels like that’s not always … it wasn’t that unfamiliar to me in some ways. 

But, I agree with Kristina that I feel really fortunate that I have um, first of all a bunch of really amazing relationships. People who are really excellent at communicating through like the written word, like you know, to be able to text people anywhere in the world and still feel connected in those ways is really a privilege. And I don’t know, I think friendships like Kristina and I – I live in Guelph – we don’t see each other in person that much anyways. So I have a lot of relationships that were already existing in online spaces. But those were definitely deepened out of necessity for sure. 

But um, yeah. Oh my God, the lack of like human contact is … is kind of bleak at times. For sure.

R: Totally, totally. For sure. And like ongoing, right? 

KB: Yeah.

KM: Yeah.

KB: So you were talking about boredom as planting seeds which I think is really beautiful. I wonder in what other ways being in quarantine has impacted your processes for your work or your creative life or what have you?

[00:09:10] R: Yeah. Uh … so like, my process um, when there’s not a global pandemic is uh … absolutely and utterly chaotic. And completely out of control, fairly painful. Um and honestly the pandemic hasn’t really changed that. Period. 

Um, still at home, still struggling like hell, like you know sort of pulling one strand of hair out at a time, metaphorically speaking, with every word that I have to put on the paper. Um, yeah. And it was like that before and still sort of is. But, the one thing that the pandemic um, has sort of shifted at times is that it’s – yeah – giving me some space. Um, I guess before things shut down, I was really foot on the gas. And like not in a ‘hero’s journey’ kind of way, but in a way that wasn’t serving me or anybody else for that matter. And was definitely a reaction to the spaces that I was in and the pressures that I was experiencing. Um, I’m doing a PhD right now and like navigating that space as a Mad or neurodiverse person can feel pretty brutal at times.

I mean it can feel pretty brutal um, no matter what you’re carrying. But, yeah. Like I think that the space has let me think about or maybe relate to the chaos a little differently. Um, and you know, to be clear – I don’t really know the first thing about chaos theory – but something that I heard and that I’ve been thinking about and find interesting, or um, this really resonated lately is this idea that um, chaos is this like big blank sort of nothing-ness. This expanse. 

But, chaos can also be understood um, whereas maybe the other side of the same coin as uh, like formless mass, um, like a formless mass that existed before the universe came into being. Like contained all of the ingredients.

And I think that before, um like, all I could really relate to was that uh, nothingness. And .. there’s nothing wrong with nothing.

[00:12:00] But I was really experiencing that as a lack. As a, just a real problem. And I think that … I don’t know, being able to sort of just live my days a little bit differently for parts of the last couple months, I’ve been able to just like re-learn or refamiliarize myself with the kind of ebbs and flows of my systems and thought processes. Um, to not only experience the blank but actually see, like, the magic’s in there too. All the ingredients are there and really be able to hold that with a new appreciation.

KB: Hm.

R: But my days have often looked very similar in terms of like, I worked at home before. I still am at home in a lot of ways. But my partner’s around more and just like the external world has shifted of course. But yeah, the like – refamiliarizing myself with my own sort of processes – has been uh, impactful I think. 

KB: Spoken like a true poet.

[Laughter]

That’s, that’s me segueing …

[Laughter]

KM: Kayla, those, that was an absolutely beautiful segue. I can’t wait to see where you take this.

R: It’s a perfect segue.

KB: Where could this be going, this conversation?!

So I know you do writing as a PhD student in an academic capacity, but you’ve been writing some poetry too, right?

R: Yeah, yeah. Poetry has been super cool to play with. Kind of like picked it up, laid it down, um over and over the past couple years. Really love it. Uh, but I’ve tried or, I don’t know if I’ve tried but I’ve started to spend more time with it and take it a little bit more seriously the last little while. And that’s been healing and also just fun and exciting. 

I find that related to the chaos, my ideas often come out or even form in fragments. So bite sized pieces that have maybe fallen off of some larger idea. And often I don’t even know necessarily what that big, the whole, is. As the fragments are coming out.

So poetry, just as like a medium, is really supports that sort of like non-linear mess. Both as an aesthetic and also for me as a process.

[00:14:55] So I like I write a lot about hysteria. Uh, coming at it from a couple of different perspectives. And thinking about how it relates to gender and race, and you know, the political economy. Whether it’s in history or sort of in the contemporary context. And if I’m writing about hysteria in an essay or something, then I’ve really gotta lay out my ideas in a linear structure. And piece together my thinking in a way that lines up and makes sense for people. Either chronilogically or thematically. But finding a way to sort it all that just works in terms of communicating.

And poetry lets me arrive somewhere in a more piecemeal way. And I wrote this piece in uh, quarantine about hysteria because I was noticing that – and maybe you notice this too – but just headlines everywhere um, related to Covid-19 that had the word hysteria in it. In the title, or in the you know, in the text itself. In the body of the article.

And I was just so caught on it because it was always used … disconnect … like disconnected from historical context of what, like what – sorry – it was disconnected from context of how hysteria has been used. Um, but what it … what was, what remained the same, um, between the current and historical use of hysteria was that it was supporting conservatives or white supremacist views and positions on things like immigration or global capitalism. Um … sorry, in support of global capitalism.

And poetry um, allowed me to bring the different pieces I saw together. And I like took, you know, words or phrases from a bunch of different articles and started compiling them in a document and didn’t really know what I was saying until the pieces sort of came together and I was able to offer a commentary or counter-thought to the narrative that I was seeing in the articles. Um, but I didn’t really know, yeah, I didn’t really know where I was going until I got there. So this sort of fragmented, um, approach to thinking wasn’t just about presentation but also about process and um, the message that I sort of … not the message … but like the place that I arrived or will say stopped over. 

[00:18:04] Because certainly I’m not stopping there forever. Yeah. It’s been fun. And I also think that there’s a lot of utility in that kind of a broken approach. Um, yeah.

Because it’s like the value of fragments in this current moment um, and every moment because it’s a little bit reflective of what’s actually there and we try to just package stuff in a way that is clean and uh, digestible. But really, like, shit’s complicated always. And our thought processes are complicated, and we sometimes have to – I – sometimes have to make them appear differently. But when we are engaging in conversations about Covid-19, about medical and psychiatric violence, anti-Black and anti-Indigenous violence, these are big conversations and I think that like … the messiness is important when we’re trying to connect with one another and just imagine new ways of being together and taking accountability.

KM: Yeah. That’s uh, really beautiful. I want to come back to uh, what you said about shit being complicated and our thoughts are being complicated. Um, how does leaning into Mad politics, and Mad aesthetics; Crip politics, Crip aesthetics, support the complicated nature of our thoughts, our bodies, our minds – the shit that we currently are living through?

R: Hm. Yeah. I mean, I think in so many ways. Um … so many ways. First of all, just the imagining how we do things from a Mad and Crip position. Understanding of course that there is no, like, um universal Mad or Crip position. Um, that itself, of course, is fragmented. But, that those, that the range of politics and values create spaces um, and processes that are inclusive.

[00:20:55] And to a range of bodies and minds. But that aren’t just inclusive, or maybe it’s that, to be actually inclusive we need … that … to be actually inclusive it’s about also of course engaging in critique about like queer ideas of … if we’re talking about madness … ideas of reason or rationality come from. Or how are different bodies or minds differently surveilled in relation to like all of the other structures and systems of power and violence?

KB: Mhm. Yeah, I know um, you are involved in Crip community in many ways. Creatively and professionally. And I really hope you can tell people a little bit about Crip Rave and what you’ve built in that space and what that, what that is.

R: Yeah! Uh, so, Crip Rave is something myself and Stefana Fratila started. We had our first one in August 2019 as part of Bricks and Glitter. But I met Stefana at, we met at Sick Theories in 2018. And yeah, that was, that community conference and we really like connected, hit it off. And we were hanging at her place sometime afterwards and having a conversation about how we both really love, um, electronic music spaces and rave spaces but also how notably inaccessible they are. And so Stephania is a DJ and a sound artist, and I am not a DJ or a sound artist, but I am a community organizer. So we tossed around um, this really loose version of what Crip Rave ended up being. We were both just super excited about it, you know. Both like the possibility of creating an accessible rave space just tended to the range of people’s needs and desires, you know, like earlier start times, ending earlier as well. You know? Places to sit or stretch on the floor. Having harm reduction supplies out and available. Like a range of things to eat and drink. 

[00:23:51] Just …

KB: As a chronically hangry person that would be a huge draw for me!

R: Hm, yes! And so of course it was important to be thinking about venue space as an um, really important thing. And also thinking about um, what else. Right? Like what else makes a space accessible. Getting in the door, um, and once we’re inside, what do people need. And yeah. Just like imagining what that could be like. And then on top of that, also just like centering Crip and Mad um, sick, deaf, disability, visions about what could be possible when sound and disability come together, right? Like all just like the aesthetics of that, um, not just like including these things into what Rave spaces already are, but also tapping into the possibility of what it could be. Felt like yeah, really moving, um, and exciting um, yeah.

KB: That’s so cool. And I know you got a bit of coverage and people were talking about this when it happened. What was the reception like from the Crip community and beyond?

R: Yeah I mean it was so cool to connect with people at the party and then afterward. It seemed like people were really excited about it. Um, and it seemed like people really loved the party, loved the vibes, the music … um … really were you know, excited about the access and the art and how those things came together. Um, yeah. I think the feedback was super positive and encouraging. We were gonna do uh, a second one in … oh my goodness, was it March or April, I’m lagging right now …

KB: In Covid times.

R: Yeah, exactly. Exactly. We’re going to plan an after party as part of Images Festival, we will hopefully be back in early 2021. Yeah. And we’re excited to just try some new things. Some, like, DJ-ing, and music production, sound production workshops. Um, yeah. Cause like you know, the education and skill sharing feels like a really important piece.

[00:26:27] You know. We know that like disablism impacts who we see on, like, represented on bills. Um, because people’s accessibility needs are just not met. And also, you know, there’s all kinds of other structural stuff that is about people even knowing that this is an option um, and I say this of course, um … also knowing that Crip, Mad, Disabled, Deaf, Sick folks have been experimenting and like crushing sound and music all along. You know? This is like not new. So we’re just sort of trying to contribute to that and be a part of that and build community and connect with community that already exists.

KM: When it comes to, um, Crip community, Disabled bodies, Disabled minds, Mad folks, Deaf folks, Chronically Ill folks, often times we experience a lot of inclusion – er, we experience a lot of exclusion – and we know how to name that, we can say a building with stairs or washrooms that are inaccessible or even uh, gender specific washrooms. But inclusion is kind of hard to name with a checklist but, you know when you feel included. As a community organizer with Crip Rave specifically, what ways do you ensure that your community feels included? 

R: Such an important question. And … you know, the first thing that comes to my mind is that work is just never done. And I don’t say that as an excuse, it’s just the reality that it’s never done. The process feels never done for me anyways of the reassessing, always how a space has been inclusive or exclusive and then finding ways to respond to that, um, you know? Like at, at the first Crip Rave um, we realized that when we were in the space, just the … you know, the, the range of access needs and in terms of sound volume being one example, right? 

And supporting what felt um, what was necessary for people to be in that space and feel safest and had most access to it in terms of the sound volume.

[00:30:03] And so sound was not – we ran into this thing where the sound was too loud, and at the same time it also wasn’t loud enough depending on what people needed. And we realized that we forgot to get ear plugs. You know what I mean? That was just like … how did we forget to get ear plugs? Um, when I go out I always take ear plugs with me. And so that I can sort of even just you know, put them in, take them out, depending on how I’m feeling. And so in that moment my partner was just like ran to Shoppers and got like a bunch of ear plugs. But you know, sometimes you can’t respond in the moment um, that just won’t be good enough. Sometimes you can. But I think what feels important is just always reassessing and listening and knowing that there’s always, there’s always more work to be done, right? 

Um, because accessibility is different for all of us, but it’s also different um, often like for me, what’s, what I, what my accessibility needs are one moment are different from the next. And it I think that like, ongoing community dialogue and also working with different people for different events, um, and as the project grows we learn more about what um, what we’re doing and how to do it. I think that that’s sort of just the work of the process. Um, yeah. Like still have lots of work to do around like Deaf accessibility. Um, that’s a huge piece that we’re sort of still thinking about and have – and need to make connections around – and uh, there’s others, yeah. Totally. Other things that are work in progress.

Yeah. It just also feels important to be like, as part of the process to be contemplating what accountability means too when we just inevitably um, mess up or cause harm. Uh, yeah. That’s a really important question.

KB: And yeah, just, just I think being humble enough to recognize that we’re all gonna mess up and all we need – not all we need to do – but the best way we can respond is to say like Oh, thanks for letting me know. I’ve made a note of that and we’re gonna do better next time, how can I help?

[00:32:56] R: Totally. Yes, absolutely. And not airing your guilt to the person who speaks up or .., um, ‘cause that’s always such a generous thing to be told how you can do better next time. It’s like, the risk that people take on to actually give you that information … yeah.

KM: I think because our society, we don’t really have any systems in place to hold people accountable that isn’t punishment. And so, we don’t as humans, like – accountability isn’t an equal to punishment. And punishment isn’t an equal to accountability. And I think um, Crip community is kind of leading the way of what it looks like to be accountable to shortcomings and learnings. Um, and I think it just, it – even in our holding ourselves accountable – we need to hold ourselves accountable but that’s gonna fall short at some point too. And just leaning into the fact that this work is a never-ending process and that’s what’s great about it, because there’s always more for all of us to grow. And there’s kind of that helpful idea in being held accountable, that there is room to improve and room to do better by both ourselves and our communities.

R: Totally. It resonates so powerfully for me. And the knowledge that – and skills – that we can share between uh, communities, right? Like, you know, having like all of the incredible conversation right now around defunding the police. And … imagining other ways for yeah, like justice and accountability. And like, Black Indigenous Women of Colour have been doing these processes and thinking these thoughts, um, for so long. And certainly Mad and Crip Black Indigenous women of colour, and so the opportunities to yeah … just for dialogue, for conversation, for like … just, exchange and also just like noticing, tending to, yeah – like the intersections of all of this stuff right?

KB: Yeah so we’ve just got a couple questions left for you today. Um, and I have been so inspired by you since we first met which was almost two years ago now. I was co-facilitating a digital storytelling workshop with the ReVision Centre out of the University of Guelph, and you were a participant in that space. And you made an absolutely stunning film that I know went onto be shown in film festivals. 

[00:36:12] Um … you know, a person of many talents. Do you want to share with our readers and listeners what that was all about?

R: Yes, that was the best! That workshop or few days of learning was so special for me. Meeting you and like the rest of the crew was just, yeah. It really was the best. First time in Guelph too, and what a beautiful campus! Yes. Um, so many trees. It was really beautiful. Even though it was also December, but I remember there were definitely leaves on the trees.

KB: Weren’t you filming outside in the snow?

R: That’s exactly it. I was. Yeah. Uh … so that digital story, yeah, submitted it to a couple of film festivals, it played at the Montreal Feminist Film Festival. And one in Oaxaca, Mexico, which was really exciting for me, my first film festival. And that was great. The, it was called Painful Perception, and it was basically I just put moving image to uh, a poem that I had written. And it was related to my experience uh, with like gender and chronic vulva pain. Vulvodynia. And thinking through some of those pieces, the way that pain has shifted my perspective in different ways. Both in ways that have been generative and awesome and other ways that have been really tough and lots of overlap as usual. But, that was uh, that was cool.

I mean, also that workshop was also really neat for me because just how accessible I found it. Like with the way my mind operates, sometimes computer programs and stuff I’m just like nope. That, they don’t work for me. I don’t do that, I can’t learn that. I didn’t learn how to download a song on the internet until well, ever really.

KB: Why are – I don’t know her. Like …

R: This is it, really, truly I didn’t do it and I should have, trust me, just based on when I grew up and what was happening at that time.

[00:38:55] But I was just like no, I can’t, I don’t know how. So the thought of learning Final Cut Pro was just impossible. But it felt super possible with the support and just like the way things were set up. Um, yeah. I loved it. And also really am excited to incorporate film or video um, again with my work. And just wouldn’t have even considered that as an option without having um, visited the ReVision Centre and worked with you folks.

But, I don’t know. I like … I feel like I have my, I have like 1 toe in multiple different buckets. And like yeah, my practice feels just as sort of fragmented as my thoughts. And that is both fun and exciting and also just like makes me get to feel like a little bit of a fraud in everything. 

KB: Yeah, the imposter syndrome is real.

R: Oh, it is like the realest shit ever.

And I could be like yeah, it’s not real, it’s fine. And it is fine – and also, it’s like – who am I trying to kid? You know? Um … yeah. 

KM: But also like somebody reframed this to me quite a few years ago when I was talking about my own imposter syndrome. And they were like Yeah, but like imposter syndrome can be reframed as a really good thing because it means that you have space to grow in the space that you are already occupying. So it’s like, where you are taking up space allows you to grow. 

And I think this idea that we need to like, overcome imposter syndrome or be in places that don’t make us feel like imposters, it’s like what if we just leaned into what an offering of being in a room that made us feel like we had to grow could offer our personal growth?

R: Yes.

KB: Yes!

R: And also offer community even when we are not like, when we’re not pretending to be experts or think we’re experts. Um .. yeah, I love that so much. Like, because I am so much more likely to listen when I’m not so sure of myself. I was actually getting some education, so I’m a social worker, and was starting up a like, starting to see clients in a counselling practice. And I was getting some extra education around that from someone who’s been doing it for a long time.

[00:41:56] And was talking about some of these feelings around imposter and insecure and very similar to what you’re saying, Kristina, you know, she shared that it’s really good to be insecure um, when you’re offering uh, care or um a service to somebody that involves a high level of trust um, and I really loved that. Because I don’t know, I have a really complicated relationship to just social work in general and all of the related practices of like counselling and psychotherapy and just because of the, like, violence that is also connected to um, quote unquote, helping professionals, right? 

Um … yeah. I mean, just like – the amount of harm is unreal. But I thought that was a cool piece of feedback around insecurity, uh, as like unethical in some ways.

KB: Yeah, that’s really cool. Yeah, Kristina your comments and Renee’s, yours too, reminded me I saw imposter syndrome reframed another way which was if you’re in a space or relationship with folks and you feel like an imposter, it’s like, well don’t you trust them? Like whether it’s your mentor or your peers or your teacher? They probably asked you to be there. Like they want you to be there because they believe in you whether it’s your current ability or your potential to grow. It’s not an accident. It’s not like you stumbled into something – chances are, right? So if you can reframe your faith in your community and your mentors, as well, then it’s a way to kind of like reverse engineer your own confidence.

R: I mean I gotta tell you, this is just like great in terms of my own feelings around you asking me to be on this podcast. Cause I was like mm … are you sure?!

KB: Oh my God, stop.

R: That’s really, that’s really awesome.

KB: Yeah, the honour is ours.

R: No, all mine.

KM: Truly.

So Renee, we talked a lot about arts and community and a little bit about academia, and yourself and your process. What is your dream for the spaces that you occupy? What would you like to see in a vision in the future for art spaces, for Crip Rave Spaces, or academia or social work? What is the dream?

[00:45:07] R: Ooh. Really small question, though. That’s uh … [laughter] ah! I mean, I don’t … there certainly isn’t one answer for that. But there’s also not one answer for those spaces. Um, my dream for some of those things you mentioned is like, that they wouldn’t exist anymore, you know what I mean? Um, and for other things that they just like, that we’d all invest in them, you know? I’m being vague on purpose there. But the … the uh, yeah. I … listening to, I think the thing that ties it together though for me right now in this moment anyways is listening to each other’s dreams. 

Um … that feels like a necessary point of, or part of uh … a collaborative praxis. That, I think we’ve been talking about. Like you know, listening. Um … and I think that’s continues to be a big part of it. But also like listening in the active sense, right? Like listening and responding and not just taking and listening, um, but like what do we do about it? 

And yeah, like coming full circle with the fragments, um, holding all of the fragments about the, in terms of the answers, that will inevitably come from that, um … and then listening some more. to all of the Crip, Mad, Queer, Black, Indigenous, People of Colour answers to the question of how we hold all those fragments and be together and build together. Uh … for me, so much of that is about like building the skills to just bear the unbearable in terms of, yeah, just all of the unbearable, you know? 

And just some of the awkwardness and discomfort and uncertainty. 

[00:47:52] Cause those things actually just like, really can take over. And my work right now is about like digging into those things in a way that is, like how to show up in the spaces that I organize or think in or just like, you know, love in. Both like political spaces or arts spaces or even just like you know, relationships with my most intimate and cherished people. Um, how do I do that, how do I do those things from a place of like real vulnerability and not performed vulnerability. 

Yeah because I feel like that is in fashion right now, vulnerability, to some degree. And that’s amazing, it’s awesome, truly. And when anything becomes really popularized, it also becomes corporatized and capitalized on and then we lose, we lose it, right? It’s the same with diversity and inclusion to a lot of like … it’s the same with diversity and inclusion um, in a lot of ways. In a lot of spaces. Like those things are necessary and politically critical. And then they also become like selling points, or like how company gets, you know, goodwill. 

KB: Or like when a bank has a pride float.

R: Like yes, right?! [laughter]

KB: It’s like “brought to you by …”

R: Yeah! And becomes the actual tool to how dominance gets reinforced, right? So for me it’s like ok, well vulnerability, how do I do that honestly. Because I can only start with you know, what I can do. Um … in terms of I don’t have the answers for anybody else. 

KB: Right.

R: Yeah. I mean … yeah.

KB: And so in spite of all these struggles and tensions, and these unprecedented times, quite simply, what is bringing you joy right now?

R: Yeah … so I got a dog. 

KB: Oh!! What’s their name?

R: Like, at the end of May. Bernadette. She’s like a Boxador, um, sorry – Boxador, so a Labrador-Boxer. 

KM: Oh my God, I love her.

R: I know, I love her so much. And I am truly the least suspecting person to ever get a dog, couldn’t have been more indifferent about dogs up until May 27th or whenever I got her.

[00:50:50] And then was just kind of joking, we actually babysat my partner’s um, like a colleague of my partner’s, um, dog last year. And I started to joke about it since then. And then it got real serious after being home for a couple of months. Anyhow, so I got her, she’s great. She really likes bring me so much joy. I find I; we go to the dog park every day and I have grown to like look forward to it so much for so many reasons. It brings me into my body in ways that feel good. Um, and also like, such a little microculture there. Like I go and I see people …

KB: Dog park culture.

R: Yes! It’s fascinating. I’ll go and see people who I see sometimes several times a week. I don’t know their names, but I know their dog’s names. And I notice I’m the least judgmental version of myself when I’m there. I’ve just, I have beautiful thoughts about people, and I get to hang out with people who I wouldn’t normally see probably, it’s ah, really cool. And as I go back into, you know as things start to pick up, the last few weeks have picked up a bit, and some of these, some of the awesomeness I tapped into over the last few months at different points has felt farther and farther away. And I’m like really wanting to hold onto that, also realizing the sort of structural pieces around why it’s difficult to do that are real. But I think that just joy and wasting time—I don’t think it’s actually wasted time, but like wasting time according to some people’s standards—is such an important thing to do. And my dog really gives me no choice but to do that actually. Cause she just wants to hang out and flick a ball, you know? 

[Jazz music]

KB: Crip Times is presented as part of the Wheels on the Ground Podcast Network. This podcast is produced by us, and supported by Tangled Art + Disability and Bodies in Translation. If you enjoyed this interview, we release new episodes every Monday wherever good podcasts can be found. 

[Jazz music outro]

[00:53:38]

 

Syrus Marcus Ware image

Crip Times Episode 1: The Syrus Marcus Ware episode

In the first episode of Crip Times, hosts Yousef, Kayla, and Kristina speak with artist, activist, academic, and all-around brilliant human, Syrus Marcus Ware. 

This conversation discusses the movements and actions that have occurred in Toronto and across Turtles Island over the summer of 2020. The building of collective knowledge surrounding social justice and abolition. The four discuss the role of Deaf, Mad, and Disabled folks in activism, their value and necessity in activist spaces. The conversation moves to intergenerational movement building, the role of traditional knowledge in our imagined and possible futures, and the role of children in activist spaces. They discuss activist scholarship and how traditional academic spaces can be used as sites of activism. 

“It’s just time to take a leap and imagine a future that is different than this one.”

The episode wraps up with a conversation on joy and desired futures. 

Image description: A black and white photograph of Syrus Marcus Ware. Overlapping the photograph is large, right-justified pink text that says ‘Syrus Marcus Ware’. ‘Syrus’ is in all caps and ‘marcus ware’ is in all lowercase. At the bottom of the image is the Crip Times Podcast Series logo. The background is bright green, The image was designed to evoke a vintage floppy disk, with bold, rounded text, and a lighter green box containing the logo.

Crip Times’ Favourite Quotes: 

“When we start to actually ask questions about just what it is, that the police do particularly well and when you actually start to try and make a list, okay well, they’re not responding to sexual assaults well. They don’t seem to de-escalate conflict when they arrive, they seem to escalate conflict, they don’t respond to crisis calls. So all the Mad people who are being killed or taken away to Psychiatric detention in these wellness checks, well they’re not doing that well. So you start asking the questions, it starts to become pretty obvious we are spending millions of dollars that isn’t actually working for so many of us.”

“So we would have Indigenous resurgence, we would have a place that thought that Black lives were inherently valuable. We would have a world where Trans Women would get to be in their 80s or 90s. We would have a world where Disabled, Deaf, and Mad people were expected, anticipated, celebrated – you know? Where all of the ways our body minds worked and behaved were exactly what were supposed to happen, you know? Where we would actually honour the many, many gifts that we all come with.”

“We’re working for a world where Black Trans women with disabilities or who are Mad or who are Deaf are thriving. Because when we’ve done that, we’ve done it for everybody.”

“Our current society is set up on a carceral logic that you just need to fix the people, the state is fine. Of course we know that’s not true. The state is working as it’s intended to, it’s not broken, therefore it cannot be fixed. We must abolish it. Right?”

“Abolition is an idea that says that we can take care of each other. We don’t need the police to take care of us, we don’t need the state to take care of us. We take care of us.”

“Disabled and Crip artists to the front please and let’s imagine some new ways together!”

“We can win. We can do this. We can solve climate change. We can heal the planet. We can end anti-Black racism and White supremacy. We can make sure the future is not just accessible, but is led by Disabled, Mad, Deaf leadership.”

“So instead we could say, oh, children are valuable just as they are, actually! Not as future workers but actually as they are. And our elders are valuable, you know? Not as former workers, but as inherently just as they are. You know? So intergenerational movements are where it’s at. And I think that will be a big thing as we move forward into our futures.”

“Kids are quite trained already and quite adept at doing this work. We just have to bring them into our movements and consider their work to be valuable.”

“We could just live in this beautiful, beautiful planet and we could be in relation to each other and we could take care of each other and we would make sure that everybody had what they needed to survive and thrive, and we could just live. And be there for each other. I mean, it could be so much more beautiful than it is.”

“So it’s just time to take a leap and imagine a future that is different than this one.”

Additional Links: 

Syrus Marucs Ware on Twitter 

Syrus Marucs Ware on Instagram

BLMTO Twitter  

BlockORama Facebook  

Juneteenth Toronto Actions 

Combahee River Collective 

Syrus’ work: Antarctica

Syrus’ work: Activist Love Letters 

Tooker Gomberg’s Letter to an Activist  

Syrus’ work: Ancestors Do You Read Us 

About Toni Cade Bambara 

Leah Lakshmi Piepzna-Samarasinha

About Panarchy Cycles 

About Assata Shakur 

Anne Helen Peterson on Twitter 

Activist Scholarship- The Book  

About Julia Chinyere Oparah

About Margo Okazawa-Rey

About Huey P Newton 

About Angela Davis today  

Chase Joynt’s work

Kimya Dawson’s work

Full Transcript 

Voiceover: You’re listening to a Wheels on the Ground Production.

[Jazz music playing]

Yousef [Y]: Hello and welcome to the first episode of Crip Times. Today on Crip Times, we will be speaking to Syrus Marcus Ware, an artist and activist with your hosts, Yousef, Kayla, and Kristina.

Now we have the general recording going. So welcome Syrus to uh, the first episode of Crip Times. It is an absolute pleasure to have you here. Uh, would you like to give a little bit about yourself for our listeners?

Syrus Marcus Ware [SMW]: It’s an honour to get to be a part of the inaugural broadcast. I am Syrus, I am an artist, an Activist, an educator, a scholar. Um, a professor at McMaster University, an activist for BLM Toronto and BlockORama. And as a visual artist I’ve been making work for about 25 years. Um, here in Tkaronto and beyond. And yeah. I, I am so happy to get to chat with you!

Y: We’re really pleased to have you on board for this episode. To start off with our first question, we spoke as a group last um … right after you had done an action in front of the Toronto Police Headquarters I believe it was. Um, and now we’re recording the episode a few months later. And the most recent headline being that uh, Donald Trump has Covid-19. Which I think we found out as of this morning. 

Um, so I was wondering if you might wanna speak a little bit as to what’s been going on for you as an artist and an activist in that roller coaster of a time that we’ve been um, going through?

SMW: Yeah, what a wild uh, 2020 it has been. I mean, my experience has been very similar to what a lot of people are saying. Uh, nobody could’ve predicted any of the things that have happened this year. Um, when we last spoke it was in … just after Juneteenth which is a very significant day for Black communities. It’s a day when we remember the signing of the emancipation proclamation and a bunch of liberatory struggles that happened in the month of June in the southern part of Turtle Island.

And we had created a 7500 square foot mural uh, public mural created with 80 artists that said, “Defund the Police.” And it was written in bright neon pink, the Queer-est colour we could find. Um, and it was painted in real time on the morning of Juneteenth. And it was such a beautiful moment. It was this moment of solidarity, of action. Of this uprising that was just beginning at that moment that really became this revolutionary moment, you know, throughout the summer. 

But this was just the beginning of it, it was just shortly after the killing of George Floyd. And Regis Korchinski Paquet and before the shooting of Jacob Blake and we came together, this bright and early this morning, and painted this huge mural and it was just so powerful, you know? And then of course we did another and this movement for defunding the police was growing and swelling and spreading all over the world. It’s a global movement. And of course what started to happen is that the police started to push back. Right? Because of course what was happening was that the movement was actually quite successful. When we start to actually ask questions about just what it is, that the police do particularly well and when you actually start to try and make a list, okay well, they’re not responding to sexual assaults well. They don’t seem to de-escalate conflict when they arrive, they seem to escalate conflict, they don’t respond to crisis calls. So all the Mad people who are being killed or taken away to Psychiatric detention in these wellness checks, well they’re not doing that well. So you start asking the questions, it starts to become pretty obvious we are spending millions of dollars that isn’t actually working for so many of us. So that movement started to move and swell and of course the state does not want to change, and the police do not want to be defunded so they started to crack down on – you saw a lot of crackdowns on activism all across Turtle Island and Inuit Nunangat.

But there’s other amazing, incredible things that have happened. People have been able to practice collective care for a couple of months now, for some of us for years in disability communities for years, but you know, in the mainstream people have been practicing it for a couple months now. People have been starting to get more politicized. So there is beautiful uh, movement in action happening that is, that is starting to reimagine the state of the world. So in June when we were saying hey … you know, I think it’s time to defund the police … even though in my heart I was screaming we need to abolish it, we weren’t really ready to spread that, you know, the message was people were scared even just to think of defunding. Whereas now with everything that’s happened, people are regularly saying we need to abolish the system that killed Breonna Taylor. We need to abolish this entire system.

So just in a short couple of months we’ve gone from maybe we have a problem with policing to this burn it all down. Which is what I’ve been wanting to do since 1996 when I became an activist, I was like we need to change this system and we need to change ourselves. So um, yes miraculous things have happened since we last talked. They found life on Venus, didn’t see that coming! You know? 

And uh yes, they did you know, shoot Jacob Blake seven times you know, in the back. Um … yeah. There’s just been so much that’s – and as you say now – the Trumps supposedly have Covid and or are trying to avoid further terrible debates, and/or both. Have Covid and are trying to avoid terrible debates. 

But we are definitely witnessing a 2020 like no other. And uh … yeah. It’s incredible.

Kayla [K]: This is Kayla speaking. Um, last time we spoke you were identifying that there is an erasure of Black identities in disability activism. You specifically identified Black Lives Matter Toronto as a disability activist group. Um, and so for our listeners who might not be aware would you like to speak a bit more about intersections of those movements and identities and how disability justice is prioritized, um, in your work and in your organizing?

[07:33] SMW: Yeah, disability justice, broadly conceptualized, has always been part of our movements. From Harriet Tubman leaving the underground railroad as a disabled Black woman, in part because she was a disabled Black woman, that she was able to be as successful as she was. And because of the way that systemic ableism created the conditions for her to have this traumatic brain injury from a beating on the slave labour camp, and the people around her not believing that she could possibly be this brilliant mastermind because they had a lot of assumptions about disability. 

So from that point on, all the way through, disability has been part of our organizing. And in the Black Lives Matter movement, which is a Queer and Trans led movement, it’s a disabled led movement, we absolutely are doing work and organizing to try to draw attention to these police killings and to this disproportionate amount of Black death that we see on Turtle Island and Inuit Nunangat in this current moment. And when you look at who it is, who’s being killed on the regular, it’s often Black, Mad people, it’s often Black Disabled people. And so we necessarily root our work in disability justice because that is who we’re fighting for. This is who is, who’s being killed. 

When we did that broad campaign around Andrew Loku and sent up a tent city in front of police headquarters in 2016, that was in support of Mad lives. To make sure that Mad people got to be Mad in public space, to make sure that Mad people got to live and to thrive and to, and to become Elders. And all of the things that get taken from us because, just the very nature of being Mad in public space and believing, behaving in ways that are seen to be unexpected by, by sanist people. Um, you know, it is enough for us to, to be killed or to be locked away in psychiatric detention.

So we’ve been continuing to do this work that centers around Disabled, Mad, and Deaf people and necessarily root our work in disability justice as a result of it. So yeah, it is a big part of the movement for Black lives. It’s a big part of Black Lives Matter, and um … you know, the kinds of changes that we’re hoping to push for, the kinds of revolutionary system wide changes that we’re pushing for when we talk about Abolition, would necessarily result in a radically re-imagined world that would be so much more welcoming, uh, for Disabled, Deaf and Mad people. It would be a world that desired disability because we would have completely re-imagined … we would have completely reimagined the structure of our society. So we would have Indigenous resurgence, we would have a place that thought that Black lives were inherently valuable. We would have a world where Trans Women would get to be in their 80s or 90s. We would have a world where Disabled, Deaf, and Mad people were expected, anticipated, celebrated – you know? Where all of the ways our body minds worked and behaved were exactly what were supposed to happen, you know? Where we would actually honour the many, many gifts that we all come with. You know? From this wild universe that we are born into, that we – all of our experience – would be considered inherently valuable. That is the kind of revolutionary change we’re talking about. You know, it is a radical reimagining of our entire world.

And as we get rid of some of the things like raced capitalism, you know, that is – that ties – value to productivity, which is inherently ableist. And will always be something that doesn’t work for disabled people because we don’t follow the same, uh, temporal uh … we don’t follow timelines in the same way because we have a Cripped way, that we Crip our time. And you know, this rooting everything in race capitalism creates conditions where particular people have money and the rest of us don’t. And so as we undo capitalism, we are in this period of late capital where the system is collapsing. We’re about to become so much freer. You know? So, yeah. Money – uh … race – uh, disability – all of these things are interconnected and create particular experiences for folks who are really marginalized in the system.

And so trying to imagine a world that is vastly different, the world that as a Cohambee 

River Collective says in the 1970s, the folks who are most marginalized, when you make the world safer for them, we’re necessarily making it safer for everybody. We’re working for a world where Black Trans women with disabilities or who are Mad or who are Deaf are thriving. Because when we’ve done that, we’ve done it for everybody.

[12:21] Kristina [Kr]: I am in awe of everything that comes out of your mouth, Syrus. You as a human and the fact that I’ve been able to overlap with your life on this planet is such a privilege. I kind of wanted to talk a little bit more about what you’ve seen as a bringing of abolition into the collective consciousness in really the last couple of months. You mentioned you’ve been working in abolitionist spaces since 1996. And really, the summer in 2020 had brought defund the police, abolish the police, into our consciousness. And as an activist, how, how have you seen the movement change? And what do you think gets lost in the messaging with just hashtag defund the police? 

SMW: You know, when we were starting to talk about you know, when we were talking about abolition in the 90s you know, people – it was just a non-starter. It was really like, er, records stop. Even in activist spaces. Even in activist spaces, there was this – well what about? Or the idea of carceral feminism. Or how we were relying on carceral logics to do away with the harm we were experiencing. And you know, being in this moment now, 25 years later, where you know – seemingly everybody – uh, put that in quotations I suppose, but everybody is talking about abolition.

It is a wild, wild thing to be able to be having these robust conversations about what our world could look like if we resolved conflict, crisis and harm in different ways, you know? And I’m having that conversation with, with my parents, I’m having that conversation with you know, right wing newscasters, I’m having that conversation with, with my kids daycare, I’m having the conversation in all the most unlikely places. I’m reading about it in Cosmo magazine. It’s a conversation whose time has come. And I think in this, in this – that trajectory of just how abolition has been taken up – is interesting to see. But I also want us to caution you know, away from a Neoliberalization of the word and of the meaning, right? 

So neoliberalism tries to consistently taking out the politics from a concept to uh, depoliticize as a way of ensuring the state’s survival. You know? It necessarily takes all of the responsibility away from the state and moves to the individual. And that’s just part of neoliberal practice. So it’s not going to say, it’s not going to full embrace abolition. Because that would mean changing the state, not changing the individual. Our current society is set up on a carceral logic that you just need to fix the people, the state is fine. Of course we know that’s not true. The state is working as it’s intended to, it’s not broken, therefore it cannot be fixed. We must abolish it. Right?

So this is a really interesting moment we find ourselves in, and I think you know, um, abolition you know is a, is, is has been rooted in so many communities. There are so many ways we can govern ourselves, we can turn to Indigenous knowledges. We can turn to, you know, Black traditions. We can turn to all of the ways Disability Justice communities that we’ve developed ways to transform harm to practice transformative justice. To resolve conflict, to pod map, to take care of each other. We can turn to all of these ways that we’ve already created for how to do this, and we can draw on those in order to continue this work. 

So yeah, abolition is, is … I’m, I mean abolition is very possible in our lifetime. You know? In 1996 talking about closing the prisons and people would just be like, but what about?! And in 2020, you can say well maybe we can close the prisons and people are like let’s talk about what else we can do instead. Now there’s the possibility to actually have that conversation. 

So it’s very exciting, it’s a very exciting moment to be alive, for sure.

[17:05] Y: I’m interested in how your practice in the abolition movement um, but also with what you’re saying about earlier, of honouring all these different people and experiences and … places that we come from as individuals. I’m interested in how those two things intersect in your arts practice and if you could speak about that a little bit. I’ve seen it for example in your work, um, creating Antarctica as a theatre piece and installation. I also see it in the large-scale drawings you do of artists and activists, um, and I’m interested in how those two things have sort of turned you into the uh, creative that you are now.

SMW: Yeah, thanks. Um … yeah, my art and activism are intrinsically connected. Uh, I have been making work that is rooted in this idea of Black activist culture and exploring Black activist culture and trying to understand it and trying to support the lives of activists. I started doing an activist love letter project in 2012 that had strangers writing love letters to activists in their communities and I mailed you know, thousands of letters over the years. And I really was trying to build up a community network of support around folks who are fighting for change because I had read this beautiful letter that this Mad activist, Tooker Gomberg, wrote at the end of his life to all activists and he said that it was essential to do things in our lives that supported us outside of activism. So that we could do activism and fully do it, but that we have other things like gardening and friends and bike rides. And things that sustain us outside of just organizing relationships.

So that, if you do start to tumble into a depression or a burnout, you have other things to rely on other than just activist movements. Because activism is fast paced, it’s quick. People – they’re just onto the next meeting, they don’t always have the time to stop and slow down. So to have other things in your life, I was moved by that. And um, started getting people to write these love letters as a way of building relationships outside of activism for people. Then I started drawing people and drawing them really large and trying to celebrate them, to honour the labour of activism. The labour of doing the meetings and making the photocopies and sewing the banners.

You know, all of the stuff that is behind the scenes. You know? You just see the activists in front of the camera on the news, but there’s a million steps before that to get them to that place.

So, um, you know drawing these portraits that celebrate and revere activists was a way all of this is part of this tenant of abolition which is we take care of each other. So abolition is an idea that says that we can take care of each other. We don’t need the police to take care of us, we don’t need the state to take care of us. We take care of us.

And so my practice has been rooted in this idea of trying to help take care of us, help take care of each other. When I made the performance and play Antarctica, it was you know, set in this dystopic future where the state hadn’t done a particularly good job at taking care of us. So much so that climate change was run rabid. And that the planet was dying because of it, and that the only last hospitable place left on earth was Antarctica now thawing out.

Um … and that play was very much about White Supremacy, and about abolition, and about uh, climate change. And about systems collapse. And about all of the things we find ourselves in in this current moment. It was very much a speculative look of what 2025 could potentially look like if we continued on the same trajectory.

So um, but there’s this activist in it. There’s this activist who believes in abolishing the state, and she believes in abolishing the company that sent them there. And she believes in creating a new world where they take care of each other, where people can take care of if they can make it there, where they can be free together. So she is very much this abolitionist activist who happens to be amongst the 11 that get sent home to stake these future land claims in Antarctica.

So that was a fun project to work on and to unpack what abolition could look like in everyday life and the ways we can try to take care of each other.

And then I have been, you know, doing other speculative future work which to me is very much about abolition, because abolition is a speculative practice because it’s imagining another world being possible. And you know, when we try to talk to people about why we need to abolish the prisons and police system, they get really scared and they say oh but what about this, this, this, this. And then it stops us from ever having a conversation about what alternatives could actually look like.

[24:04] So I try to make work that explore what the alternatives can actually look like. So in the project “Ancestors Do You Read Us? Dispatches from the Future” it’s set in 2072. And we have survived, and we’ve overthrown the police and we’ve gotten rid of capitalism and Black and Indigenous people have survived and so therefore everybody has survived, and we’ve created this other world where we are free. And they, our ancestors, use old technology to patch back into their past, into 2019 to give us this message of hope and what we need to do in order for them to live in their beautiful glorious freedom in 2072. And basically they’re saying It’s time to overthrow the state. It’s time to get rid of White Supremacy, and to do all of these things and then we’re going to make it. And we do make it.

So yeah, that’s what I make work about. 

Y: I think that’s the best advice you could give anyone at this point. 

[00:23:30] K: And you know, last time we spoke as well you were um, quoting Toni Cade Bambara who says the role of the artist is to make the revolution irresistible. And I think you’re one of the folks out there doing that.

SMW: Thank you.

K: Yeah. And that irresistibility makes the most marginalized among us desirable as well, right? I wanted to ask you about the diverse methods of protesting that you’ve identified. You know, for disabled folks to be involved as well, like nothing about us without us, and saying like if disabled people aren’t there, it’s not the revolution. Um, so what ways recently have you been really inspired by disabled folks showing up for the revolution?

SMW: Yeah, I mean there’s just been so many ways that people have been creating revolutionary action from their homes and from their beds. We saw disability leadership, disabled leadership from the beginning of this pandemic. As disabled people are like, oh, we all gotta stay home. Here’s what you do. oh, we need to start prepping and getting stuff together so we can be ready for any eventuality. We’ve been doing that forever, here’s what you do. oh, well everything’s online and it’s your only way to connect with people? Got that too, here’s what you do.

So disabled people have been taking the lead at setting the tone for how to survive this pandemic since the beginning. And when the revolution popped off in June, and I’m calling it the revolution because it really is this moment of revolutionary action, uh, at the end of a climate change cycle that could be make or break it. So it really is now or never. This is the moment. So, you know, in that revolutionary action we started seeing incredible activism coming out of disability communities that looked different.

People were organizing in ways that didn’t just require you going out of your house and meeting up with 5000 people, which is so inaccessible for a million reasons. And also a really terrible idea during a pandemic.

We had to gather in the streets, I understand that. And I’m in support of all the folks who gathered. But there are other ways that we can do it that would help to keep us all of us a little bit safer. So watching the ways people were sharing and supporting PPE, the ways people were making sure that people had food deliveries after rallies and protests. Those were beautiful things. But also all of the Crip ways we were doing it from our bed, people were doing poster projects, people were doing podcasts, people were doing online organizing, people had online gatherings. There was just so many ways that people were having these conversations that prisoners – of course, prisoners rights’ project – was doing weekly webinars. So there was all these things you could engage with from home.

So in a way, you know, it created more opportunity for disabled, sick, and Mad people. Deaf and Mad people to be engaged. I was seeing a lot more stuff being interpreted, having captioning. It was just a really encouraging moment. So you know, I was talking with Leah Lakshmi Piepzna-Samarasinha in the spring, we were talking about all this activism, but we were also talking about some of the activism in the streets and feeling a sense of what’s happening, how are people gathering and what’s going to happen? And you know, what does it mean for those of us who can’t gather in the streets because of immune issues?

One of the things that we concluded was that we really didn’t need to worry because if this is gonna be the revolution, it will only be the revolution if Disabled, Deaf, and Mad people are at the centre. And we are going to be, and we will be and so you know, this is not the revolution if it’s not that, right?

And so you know, we know that the organizing is going to look dramatically different and particularly now as we head into the second wave, you know, the organizing is going to have to take leadership from Disabled folks because we’re the one who’re going to know to make sure we do this in a way to keep us safe.

But this is also a place for artists to come in. artists are so creative, and we need to start to imagine new ways of organizing that don’t just require bodies coming in and standing in a similar place. Organizing can look different in so many ways. And artists can be very inspiring in helping us to think more broadly.

So Disabled and Crip artists to the front please and let’s imagine some new ways together!

[00:28:00] Kr: Yeah, no, I think imagining a new future is really what we need to be doing. Currently there is so much veneration about re-opening the economy in the midst of Covid 19.

And it’s like what if we reimagined our world, and I feel like the work that you’re doing and the work that um, activists are doing are offering these re-imaginings in the future that don’t require an economy to be harmful to the livelihoods of people, especially uh, disabled folks.

SMW: Yeah, capitalism doesn’t work for most people. I mean, capitalism was, is a very temporary system. We’ve only had it in human history for a short period of time relative to human history. And it’s a system that is designed to make sure that some people have a ten and the rest of the people have very, very, little. So that is a functioning system that people are going to just acquiesce to and not rebel against is dying. It’s just not possible that could go on in perpetuity. 

Jeff Bezos or Bozos or whatever his name is, the one who made millions and millions of dollars through this pandemic as the rest of us panic bought sundries so we could have a prep supply that can’t continue forever. That this one percent just keeps accumulating wealth and hospitals have to reuse PPE. And Schools don’t have enough money for teachers, I mean – it’s just – it’s a system that does not work.

And so we also know that it’s a system that is dying. So all systems go through a life cycle. There is a theory of panarchy, panarchy cycles which originated in the 1800s. it’s this idea that all systems go through an adaptive change life cycle. Even a system like a society goes through a lifecycle. So it goes through a period of rapid growth and expansion, which we saw with capitalism which we saw in the 1900s. and then it becomes so vast and so complex that it can no longer support the life at the bottom, you know, the forest has grown so tall and it’s canopy so broad that the light can’t’ make it through to the little plants at the bottom of the forest. And so it starts to collapse. It can no longer sustain itself. 

And we are in a period of systems collapse. And what happens after that is a period of rapid reorganization and reimagining planting new seeds in the bottom of the forest floor after the fire, and new things start to grow. And then you have a new society that grows and expands and eventually collapses.

So we are in a period of system collapsed right now where capitalism is no longer sustainable. At the height of the pandemic in the spring, they were putting a trillion dollars a day into the market. A trillion dollars a day just to sustain it because it’s an unsustainable mechanism under conditions like this.

So, we’ve been – you know, academics and scholars – have been talking about this period of late-capital since the late 90s. You know, that we were in the period of late capital.

That capitalism was dying. Well now this is what it actually looks and feels like. It looks like this bizarre phenomenon that we find ourselves in where they were pumping oil out of the earth even though they couldn’t sell the oil in the spring. And the barrels they were selling for however many dollars a barrel were now worth negative and they were paying people to take the oil. Stop pumping the oil out, if you have enough, stop pumping the oil out.

But capitalism is predicated on the idea that you always need more, more, more, more growth, more expansion, more extraction. And that is just not sustainable, it’s not sustainable for anything where there’s life. Where there’s living beings. You just can’t extract until there’s nothing left and expect anything to be standing – living at the end of it – sorry for that ableist language.

Yeah, so it’s an amazing time to be witnessing the fall of capitalism. And this system is something else is about to be birthed. Something much more beautiful that won’t rely on money in order to consider who is inherently valuable.

[00:32: 38] Y: And I think that’s really beautiful. As like … not like you know, not the like fall or destruction is beautiful but rather that it’s, it’s a way for us to understand what’s happening. I think it’s, it really paints a picture of hope, of yes – better things can absolutely come out of it. You know? If history has taught us anything, it’s – you’re right – it has happened before. I keep thinking, you know, being an American and looking at what’s happening, um, to the South of us. I always – I keep having like, in the back of my mind – go, oh hey, it’s the fall of the Roman empire all over again. As many people have said before.

And I guess it kind of leads me to ask you, if this is the fall – um, what do you hope, what do you imagine – that the spring is going to be? What do you hope for our future in that case? What is your dream for that?

SMW: Yeah, I mean I write a lot about the future. I write a lot of speculative fiction, and I spend a lot of time trying to imagine what it could look like. And to be honest, I actually don’t, I actually don’t quite know which direction we’re going to go in. but I do know in a lot of my writing, the stories are often set in a future that is decidedly less technological than the current one we’re in. Where you know, we perhaps return a bit more to some old ways, you know, and I think figuring out how to do that that still ensures that everyone still has access in a beautiful, full way. 

 But we can return to some old ways of being together. In the futures I’ve written about, I’ve – we’ve – often returned to being much more in relation to the earth and to the land. Um, we are in communities and we support each other and take care of each other. We collectively are responsible for our shared goods in the stories I write. People are often taking turns going and collecting water and often having nightly and an evening gathering where they dance and celebrate together. So the future I imagine we’ve returned to a bit of a different way of being together and being in relation to the land.

Now in reality, outside of the page, you know, outside of a fiction book, I think that probably our future will continue to be influenced by technology and I think that there are beautiful ways that we can use technology to help you know, heal the planet and to help make sure that everybody is connected as they could be so that people don’t feel a sense of isolation. While at the same time, I think returning to Indigenous knowledge practices and to old ways of knowing, there’s this beautiful um, uh … symbol in the Adinkra language which is a pictorial language from the Asante people in Ghana, West Africa, and it’s a historic language. And it says “sen cofam” which is, there are two images for “sen cofam”. One of them is about a goose that is walking forward but looking backwards at its tail and it says, you know, it is not wrong to go back and pick up what you have forgotten. 

So somebody with a memory impairment, I’ve always been interested in that concept. That this idea that we can learn from our past in order to plan for our future is really important to me. And I think we can turn to some traditional knowledges as a way of maybe imagining what we might want to head towards in our future.

Um … yeah. It’s pretty wild. I’m very excited about the possibility that we as Assata Shakur tells us, we can win. We can do this. We can solve climate change. We can heal the planet. We can end anti-Black racism and White supremacy. We can make sure the future is not just accessible, but is led by Disabled, Mad, Deaf leadership. We’re running a lot of the decisions about how we want to organize and be together because we are the experts in this idea of taking care of each other. Imagining that we could live in communities that were much more interconnected. That were much more um, supportive of each other. Like I really think that we’re about to get so much freer and I can’t wait!

[00:37:24] Y: Yeah, I think that’s, it’s, it’s really comforting getting the reminder that we can learn from the past. Like these things already exist for us, the things that can help us thrive in the very uncertain future. Um, and uncertain present that we have these things that our ancestors, that our grandparents did before us that we can use to survive. And keep the world a flourishing place.

SMW: Yeah. Absolutely. I mean this is the – yeah. These, even that expression of sort of being on the shoulders of giants, that we can, you know, look at some of the work that has already been done and also look to the new ways that the young ones are imagining and dreaming up that we haven’t even thought of. You know, and having intergenerational work I think is a big part of this, you know? It – it really will fuel our future in a more beautiful way. I think about the work that the Black Panther Party was doing in 1971 where they gathered people to rewrite the constitution. They were like the constitution’s a mess, we’re gonna rewrite it, and they gathered folks from all these – all these different parts of the Black communities – to come together to rewrite this constitution. And they have a treaty in there, on the rights of children. And about how the children have the right to be children. And the children have the right to make decisions, and children have the right to self-determination. They also have an elaborate uh, section on Queer and Trans rights and they are asking for things in 1971 that we’re still fighting for today. The right to be gay anytime and anyplace. The right to sex change on demand as it was called at the time. 

You know, those are the things that they wrote about in 1971 that we’re still fighting for today.

You know, the rights for women. The rights for migrants, for drug users. There was all of these things that they wrote out that they’d like to see in their ideal society. But what I’m so struck by is the section on the rights to children. That we could actually value children as being inherently valuable beings, not just little adults or someone that is about to become valuable. That is what capitalism does, it says that your main value is in the 18-35-year-old range when you’re able to just consistently work and produce in order for somebody else to make money. 

So instead we could say, oh, children are valuable just as they are, actually! Not as future workers but actually as they are. And our elders are valuable, you know? Not as former workers, but as inherently just as they are. You know? 

So intergenerational movements are where it’s at. And I think that will be a big thing as we move forward into our futures.

[00:40:30]  K: I was just saying I’ve been thinking a lot about children and capitalism lately. I have been reading Anne Helen Peterson’s book on burnout, and she describes exactly what you’re saying, where children are being raised with their productivity in mind before all else. And having their schedules you know, jam packed with um, extracurricular activities and extra tutoring and sports and things that aren’t for joy but for yeah, making these mini adults. And it’s not – it’s not great. 

SMW: No.

K: So thank you for bringing that up.

SMW: Yeah I mean it’s really; I have a 9-year-old. And you know, it’s like – it’s wild being able to be around a kid. And we’re raising her, we’re activist parents and we’re raising her from an activist pedagogy so the most important thing to me that she learns is social justice values. And then the math and the trigonometry can come later. I’m really not that particularly worried about it. I want her to learn about activism, I want her to learn about justice. I want her to learn about the climate. I want her to learn about things like that. That’s, that’s very important to me. 

But yeah, just this way that you know, that, that kids um, they’re awesome. If you actually just listen to them. If you actually paid attention to them. They have such incredible – I can remember, I wish I could tell you this woman’s name – because it, you know, this will be my biggest regret of you know, one of the things about having a memory impairment. If it’s not written down. But there was this activist I got connected to in the 90s, and she was 13 and she had spoken at this massive rally in New York. And uh, there was recording, this is the 90s – it wasn’t on the Internet, it was a recording I heard of her speech – and she was just like, “Ah!” Like Marshal P Johnson and Assata Shakur balled into one. Incredible. In what world do we take leadership from 13-year old’s in our movements? And maybe we should be. Maybe we should be. Just yeah, making more room for children to be considered inherently valuable just as they are exactly as they are. In the moment that they’re in, you know. I think that’s so important.

But this is what we get; this is the kinds of freedoms, and the kinds of ways we’re going to get to relate to each other once we get rid of capitalism.

[42:53] Y:So Syrus, in this intergenerational future that you envision, what would be the advice that you would give … what is the thing that you would want to say to other kids, or what do you say to other kids when they show interest in being involved in these?

SMW: I mean … I would say, we need you. You know? Like the world needs you so badly. Your ideas, your creativity, your games, your play. We need you. And it’s not often that grown-ups say to kids, you know, I actually really need you. But we do. you know? Like I understand we don’t want to put a lot of pressure on them and we don’t want them to feel undue pressure, but we need them. Our survival is actually essential to them. So making sure that they know that they’re valuable that we need them there, we welcome their ideas and we want room for them.

I can remember my daughter and the daughter of a co-organizer with BLM years ago now, uh, you know at our meetings we’d have childcare and the kids would go out and play. And we’d have our meeting. And then one day the kids came, and they said, wait a minute, why is it that we go out and play and you guys have the meeting? Aren’t we in BLM too, shouldn’t we sit in the meeting sometimes? I was like yeah you guys are four, but sure. Yeah actually, why don’t you set the agenda? We might have a more interesting time.

So just like making sure that kids know that they – yeah, actually – there is no wrong time for them to get involved. And they can start to imagine you know, the potential futures. You know, they’re already doing so much activism. They’re doing activism that we don’t even see as parents and as adults. The kind of organizing that they’re doing on the playground every time one of them stands up for another one who has a Queer parent, you know? Every time they’re standing up and calling out transphobia, which kids do all the time cause gender stuff doesn’t matter to kids. They’re like oh you identify as a guy. Cool, whatever. They just move on.

The way kids are taking the lead on climate change, and you know, my daughter was coming home from school saying we have to use our food and not waste it and we have to recycle, and we have to … you know, kids are really, they don’t, they wanna be able to live. They wanna live in a future where the planet is around. So they’ve already been taking leadership in climate change.

So kids are already incredibly involved in their own ways. We just don’t necessarily see them because it happens on the playground, or it happens when they’re away from the grownups. They’re already negotiating, figuring out ways to resolve conflict on the playground. They’re figuring out all these kids that we as grownups are trying to figure out. That’s what abolition is, figuring out new ways of resolving conflict, crisis, and harm. Kids are trying to do that.

My daughter was lucky enough to have this incredible teacher, Madam Lalonde that taught them to go from a big conflict to a little conflict, and how to identify if something was a big problem or a little problem. And I wish most of the police officers on our force had had that training, you know? From this grade two or grade three teacher, you know. I think a lot of people could use to understand what a big problem or a little problem is.

Kids are quite trained already and quite adept at doing this work. We just have to bring them into our movements and consider their work to be valuable.

K: Amazing. I’m just going to sit with that for a second.

Kr: Yeah!

K: It’s so simple but it’s so incredible.

[00:46:37] Kr: One thing that I kind of wanted to talk about a little bit is everything that we talked about in this conversation and your activist work and your artistic work. In kind of my … the limits of my brain this current moment in time, kind of see them as oppositional to traditional institutional academia. And you recently started at McMaster University. So, how do you bring in this bright and wonderful artistic and academic practice into a more traditional academic space that is contained within an institution that hasn’t typically embraced activism and art practices in the way that you’ve enacted them?

SMW: Yeah, I mean the academic industrial complex is a thing. I mean, it is an industrial complex and so we know that it can be this very contested space. But I have always sort of drawn my work on, you know based my work on this beautiful conceptualization of activists’ scholarship that uh, Julia Chinyere Oparah and Margo Okazawa-Rey talk about, about how we can create semi-autonomous zones in our classrooms where we get to do things a little bit differently and practice things a little differently and bring in more radical thoughts and bring in more activist traditions. So we can create these semi-autonomous environments even within a larger institution.

So they talk about the need for activist scholars to be in those spaces, because it can be a moment where you can politicize an entire group of people to get involved and organized if you do it in the right way. You know, I’m very much drawn to that. And then I also think about, um, just the ways that so many of our Elders you know, were involved in trying to push for change from within and without academia. Let’s not forget that Huey Newton was Dr. Huey P. Newton. Angela Davis is Dr. Angela Davis. A lot of people seem to have gone into academia as a way of doing something, and then what I’m interested in well once you get into those environments, how are you pushing for changes that will dramatically improve the lives of all of the people that you’re engaging with through that environment? Academic institutions can be very violent places and they can be places that are not rooted in safety. And so, how do we you know, change these spaces through our presence there. So yeah, I really, you know I encourage people to check out Julia Chinyere Oparah and Margo Okazawa-Rey work, um … uh, because it, it provides a bit of hope for a way to do it. Um, yeah. Yeah. It’s good. I mean, I feel very happy my university was very actively involved in the student strike.

And you know, I think that there are ways that people are trying to make uh, these places into sites of change. And that’s very encouraging.

[00:49:51] Kr: Thank you. My soul needed that conversation today.

K: We ask all of our guests the same two questions to wrap up. And one of those is um, what is bringing you joy right now? 

SMW: Oh nice! Um … a couple of things are bringing me joy right now. I mean, certainly I think uh, even though we know that these are very difficult times, uh, the ways that people are taking care of each other, uh, is bringing me a lot of joy. The you know, the – I’ll get groceries for you because your immune system is fucked so I’ll be the one to go to the grocery store – or I’ll order in a meal for you, or the you know, the ways that we’re sort of taking care of each other through the pandemic is bringing me a lot of joy. I chose to try to, like everybody else, uh throw my hat into the urban gardening pod so I planted a bunch of things on my tiny little balcony and they grew! You know, and I felt a sort of daily meditative practice of caring for these plants and that has brought me a ton of joy. And now the harvest is coming in and I’m eating kale and I’m eating collards, I’m from the south and I’m really into it. And there’s tomatoes growing, that’s bringing me quite a lot of joy.

And then I think … yeah, just you know, sort of knowing that um, I’m just headed into a period of ramped up creation. I’ve been in presentation mode for a while. Uh, I’ve been showing work and presenting work which is the flow of it. But I’m about to go into a bunch of creation mode, and that is always really exciting because it’s the making stuff. You know, I mostly work in drawing and performance these days, but I did an actual painting a couple of weeks ago for Chase Joynt film all about trans, uh, disclosure and Trans identity and uh, it was so fun to paint again! So I’m just really excited about going back into creative mode. It’s bringing me a lot of joy.

K: That’s awesome, thank you. Yeah, I feel you on the like, getting all the good foods we can before the snow hits us here in Ontario.

[00:52:25] Kr: Syrus, I have so much like love, respect and admiration for you and your work um, in the times that, in the years that I’ve known you and known of your work. And one thing that I love about your work is that it allows me to have more hope for the future and kind of have more desire for what the world can be and what I can be for the world. And so, we also like to ask our guests like what is your vision, what is your hope, what is your desire for the future? 

SMW: Yeah, you know I think a lot about this. I mean I’ve been kind of obsessed with this question uh, since 1996 I guess. When I started doing organizing, I was like, what’s the future going to be like?! But I’m very much, um … I’m very much interested in, in this idea. So there’s this beautiful Camia Dossen song called Utopian Futures. And she is a Black, folk, punk singer. And she writes about you know, this Utopian future. This world where the bombing has stopped and where we’ve stopped capitalism, where we’ve healed the earth. And I’m like yeah, I think that’s pretty much it. I’m really hoping for a future where we can rest. You know? Where we can finally rest because we will have eradicated White supremacy, we will have eradicated race capitalism. We will have eradicated medical and systemic ableism. We will have eradicated all of these things that are offense to our persons, to our bodies every day. And we will be able to therefore rest. We will be able to you know, lie in the grass or sit under a tree. We’ll be able to watch paint dry if we want to. We’ll be able to chat with friends. We’ll be able to make art. We’ll be able to do all of these things because we won’t be fighting against this wicked, wicked system. We’ll just be able to exist. To just live. You know? And just be free, you know?

And Assata Shakur talks about being a reluctant warrior. And she says that she’s a reluctant warrior because she wishes she had been born into a world where struggle wasn’t necessary because she would be free to be so much more. she would be free to be a sculpture, a gardener, a carpenter. But instead she’s a struggler because of oppression. 

And I feel like for a lot of us, we’ve become these reluctant warriors. But we’re hoping for that time when we get to pause and will get to be the carpenter and the sculptor and the gardener. You know? And I want that for us, where we get to basically, I’m just going to work on woodworking today. I’m going to draw. I really am going to go sit by the creek. We could just – we could just live in this beautiful, beautiful planet and we could be in relation to each other and we could take care of each other and we would make sure that everybody had what they needed to survive and thrive, and we could just live. And be there for each other. I mean, it could be so much more beautiful than it is. 

And I think that it’s actually not hard to imagine how to get there. Because we know that even if we don’t know exactly what the system is going to need to look like in order for that reality to be present, we know that we can come up with something better than our current one. 

So it’s just time to take a leap and imagine a future that is different than this one.

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K: Crip Times is presented as a part of the Wheels on the Ground podcast network. This podcast is produced by us and supported by Tangled Art + Disability and Bodies in Translation. If you enjoyed this interview, we release new episodes every Monday where every good podcast can be found. 

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