Considering Disability as Culture Town Hall: Video and Transcript

JD Derbyshire: But here I am, as I am. Thank you all for coming.

I have a series of slides that I’m going to take us through. It’s always a question when doing these kinds of things about where to enter the conversation. And so today I’ve decided to focus on, you know, a pretty basic way in assuming that some of us may know this information and if so, it’s a refresher, I know it always is for me. And some of this may be entirely new to people, so I’m going to give a little presentation.

The slides that I use are probably more for me than you. You will find spelling errors, differences in formats and things that you know you might not be used to in a PowerPoint presentation, but they are of use to me and hopefully of use to you. So I will find the button and the right slides.

All right. Can we see my slides and just my slides? All right.

Yeah, I can’t see anybody during these kinds of events, so, as was stated, if you have a question and you can write it down, I think that’s the only way we can do it, or if it comes up in the chat, and someone can let me know it comes in the chat I’m happy to stop and address it or we can get all the way through this. Please, disability culture includes opt in, opt out. It will be recorded. If at some moment in time you find your focus is gone, you need to go find your dog and cuddle, you have to pee, you have to whatever, make that macaroni glued on jar thing for Christmas and fill it with bath salts, it’s just okay. Everything’s okay.

All right. So I run a design company called People of Design, and it’s an inclusive design company that works with the idea of co-design. So we work with people who want to change a process or sometimes a product, and we work from them right from the beginning to like surface the very knowing of the people who are going to use the process and or the product, and it was formed by a queer, disabled people, people who live with disability, we say disabled people. As you learn in the presentation there’s all kinds of ways that people like to be referred to, but today I’m going to talk about cultural humility and disability culture.

Hello! And what’s happening here?

That’s for me.

This is me. This is a nice picture of me. This is a degree I have. These are some of the things I do. There’s an email address that if you want you can contact me. I’ll give it again at the end.

Also, this is the stuff I don’t always do in a presentation, but I’m neuro non-typical. I think I misspelled that, so that’s proof I live with brain injuries. I’m dyslexic, I’m mad, which means in the mainstream world I have mental illnesses. I’m a voice hearer and I’m queer and non-binary.

This little company I run co-designs imagining and shared learnings for equity and belonging with queer and trans folks with disabilities. Here’s some of the people I’ve worked with. I’m trying to legitimize myself in your company. Canada Council for the Arts, Banff Centre for Arts and Creativity, Rumble Theatre, Vancouver Children’s Festival, inside Out Theatre, Theatre Alberta, Republic of Inclusion, the National Arts Centre and Vibrant Communities Calgary are some of the people I’ve worked for. We’ve worked for.

I always like to contribute or attribute all the learning that continues. These are my guides and teachers, the most recent ones. If I had gotten my, you know, poop together today I would have made these linkable. But I will, if anybody is interested, get those links to you.

My current curiosities are, I’m doing an embodied social justice certificate with the Reverend angel Kyodo williams. I’m studying decolonizing nonviolent communications with MJ Balvanera. Sorry and I’m just rereading 21 Things You Should Know About the Indian Act by Bob Joseph, and I’m reading something called Mad World: The Politics of Mental Health by Micha Frazer-Carroll. And I’d just like to always note the current curiosities cause they’re affecting my thinking as we go forward.

Cultural competency. So there used to be a time when you could get a badge in cultural competency. You could take a course, you know, and have this on your resume. These are actually still available, but today there will be no badges and no certificates. So I hope I’m not disappointing you. The reason is because we will never get it right, I will never get all this right. I need to stay curious about it, I need to share freely what’s been given to me, and that’s all I can do.

So. Cultural humility, as I’ve come to understand it at this moment in time, is a term used to recognize the limits of cultural competency. So this idea that you could become completely competent is, I think, something that you know we live in a tyranny of rationale, you know we are led to believe we can understand everything and know everything and that will protect us from making mistakes. And I hope I’m not blowing anybody’s mind right now, but that’s just not true. All we can ask of ourselves is to make a commitment to stay curious.

So this means I’ve come to understand a humble and respectful attitude towards individuals of other cultures, a challenge to my own cultural biases and a realization that I can possibly not possibly know everything about other cultures, but I can have an approach to learning about other cultures as a lifelong goal and process. Which brings me to the provocative question of the day: Is disability a culture?

What is a culture? According to anthropologists Bates and Plog, who I haven’t met personally, but I love their names, it’s a system of shared beliefs, values, customs, behaviours, and artifacts, artifacts that the members of a society use to cope with their world and with one another. and that are transmitted from generation to generation through learning.

So what is a disability? There are many models of disability and I’m going to take you through three of them today.

The first, and still I would argue, most prevalent model is the medical model. So this is historically when Western societies have vowed disability as a deficiency residing in a person’s body or mind. From this perspective, disability is seen as something abnormal, bad, pathological, problematic and is something that needs to be fixed, cured, removed, hidden or minimized. Non-disabled bodies and minds are seen as normal, healthier, better and good. This can lead to harmful things that still happen every day – poor treatment of disabled people who are often devalued and disrespected and pushed out of our communities or not able to get into our communities in the first place. So that’s the medical model. That’s the model that, yeah, it’s something that needs to be fixed.

The social model is while a person may experience an impairment or difference, that person is more disabled by barriers in society than by any individual trait. So in this model we are aiming to identify and remove physical communication, technological, organizational and systematic and attitudinal barriers. So we can see here that internal problems are the medical model, so labels like insane, disorder, defect, sick, abnormal, deficient, diagnosis, mistake, broken. And the social model looks at the external barriers that make a person not be able to participate fully – communication, technology, organizational, systematic, physical or architectural, attitudinal disabling, environment and human rights violations.

The socio-political model is the notion of extending the same concepts of cultural humility that have been used in addressing cultural differences due to ethnicity, to the disability culture which is commonly described as sociopolitical or minority model of disability. In this definition we find persons with disabilities being defined as a cultural group and the elements of their culture allow persons with a wide range of disabilities to cope with the world. I will say that within this idea of disability culture, just like the idea of Indigenous culture, there are many sub nations, many individual cultures – Deaf persons, capital d or small d, if they speak ASL, have their own language as a culture, acquired disabilities, disabilities. When you come into the world with a disability, all kinds of sub-cultures, but we’re thinking of it as a whole culture in terms of how we interact with it.

There’s an institute on disability culture that’s been around since the nineties. One of the most frustrating things about being involved in this work is yeah, these things have been being talked about for a very, very long time. It states that people with disabilities have a forged group identity, so it’s arguing for that it is an identifiable culture. It has been my experience that we share a common history of oppression and a common bond of resilience. We generate art, music, literature, performance, and other expressions of our lives and culture infused from our experiences of disabilities.

We claim our disabilities with pride as part of our identities. The elements of our culture include certainly our longstanding social oppression, but also our emerging art and humour, our piecing together of our history, our evolving language and symbols, our remarkably unified worldview beliefs and values and our strategies for surviving and thriving.

So this is, I can’t remember his first name now, Gill 1999. And the reason I put that is that the Institute of Disability culture has been around that long and but yet this idea of disability as a culture is still kind of not known.

Some other considerations is when considering the culture of disability, it’s relevant to include the values and needs of a broader network of persons who are integral to the culture, such as parents, spouses, partners, caregivers, siblings, children and advocates. Not only do persons with disabilities contribute to the values, beliefs, and shared experience that constitutes the disability culture, but family members, caregivers and advocates may be deeply rooted in and contribute immeasurably to the culture. Any definition of disability culture must include this extended network. That doesn’t mean that those people get to speak for the people with disabilities, but it does mean that they’re part of the community and culture.

Which brings me to my favorite ism, or the long-ignored ism, the last ism at the table, Ableism, which is defined academically as the discrimination and social prejudice against people with disabilities based on the belief that typical abilities are superior. At its heart, ableism is rooted on the assumption that disabled people require fixing and defines people by their disability.

Saneism, which is a part of Ableism, is discrimination against people with mental illness, and we can see that in poverty, unemployment, health disparities and involvement with criminal justice systems which could be an entire town hall. But I’m just gonna leave it there.

I’d like everyone to, if you have a pen or a space to kind of look up in the air and think about these things. If you know of any ableism words. If you can think of words that are ableist.

There are so many of them, and I do not like to say them out loud. I need to acknowledge that I am always looking for the most elite pusher of the ideas that I have long held to give legitimacy to the ideas that I’ve long held, and the Harvard Review of Business quite recently talked about Ableism in language. So I’m gonna, I mean, Ivy League backup. So why believe me, but Harvard’s talking about it now, so that’s gotta mean something in this tyranny of rationale that we live in.

Ableism is bigger than language. However, language is a tool we use to make sense of our feelings and environment. When we verbally describe the things we experience and people around us, we are also assigning value to them and that value impacts how we interact with each other. So, how we use language, it reveals our unconscious bias. So I’m not going to say a lot of them, but I will say one out loud. That is just the word crazy. As a matter of curiosity, how many times you use the word crazy, and think about what that might mean when you’re attributing that trait to something you don’t quite understand It reveals an unconscious bias that there’s something normal, and there’s something crazy. And if we believe that people with mental illness should not be in our workplace, life, family, or neighbourhood, then it’s easier to use these words, and if you don’t believe that then try not to use the word crazy. I hope you’re keeping a list of all the ableist words you’re able to think of, because we’re going to talk about them at the end.

So you might think only crazy people do that. I don’t do that, so it’s okay for me to say, but when people say these things, they send a signal to people with psychosocial disabilities that we are not welcome. Ableism can be blatant. It could be like lack of accessible infrastructure. So a lot of times why we don’t see persons with disabilities in our spaces is because they can’t get in. It’s one of those things that if you know somebody or you’ve experienced a disability, all of a sudden you start to see who builds this world according to their specifications, and then you start to have a sense of how much of a barrier our physical environments are. Disability advocates, justice advocates often talk about TABS which is Temporarily Able Bodied. We will all age, we will all experience physical and cognitive disabilities, and rather than be afraid of that, we could start to think how, as those things happen to us, we will want to be included in the communities we are now a part of, and at the very basic to get into the buildings we want to get into.

It’s also things like performance evaluations based on what are traditionally considered productive or appropriate behaviors. So I am a person who, as Shawn Newmeyer says, Shane, sorry I actually know this guy. Unfortunately, people may not realize that doodling during a meeting or class may be a way of paying attention. So I actually put up my doodles. I’m not gonna doodle cause I’m actually doing the presentation today. But that is a way for my brain to be able to listen. And a lot of times people think that I’m not paying attention, so I think that’s just one of the, it’s an example that I’m free to talk about, because that’s my lived experience. And there’s lots of other ones, and I think it’s really interesting when we think about what’s abnormal behavior, what’s considered what we consider abnormal behavior in a space. This also includes my friends with autism who have modulation differences, sometimes speak louder or softer.

Yeah, so this can show our internalized bias. And also when you treat disability as a joke, a metaphor, or a euphemism you’re causing harm in a couple of ways. First, you’re spreading the idea that it’s acceptable to dehumanize and stigmatize someone with a disability depending on your circle or friend group, you could even be enabling others to do the same. Writing off a slur or universally unacceptable expression, like the R word or the M word might be easier for disabled person than constantly confronted microaggressions. So this is when we’re put in circumstances and hearing words like crazy, another big one is lame. Another one is, you know from like queer activism, is gay. You just eventually, you have to make a choice based on the day about how much energy you have to educate others. And again, I hope you’re thinking about yeah, ableist words that you may have heard or have in your vocabulary already trying not to use.

Stigmatizing already marginalized people, using words that are ableist can distract attention from the point you’re trying to make and normalize the idea that disabilities equal insults. So I love this example, when you say Trump is such a psycho or weirdo for his stance on immigration, for example, you end up focusing on those specific words without addressing the real issue – What it is that you don’t like about the immigration policy? When you attack a person’s physical and mental abilities in place of actually expressing an opinion or idea, you further stigmatize persons with disabilities.

Curiosity about our vocabulary. So I just encourage everyone, we get caught, language changes all the time, but using ableist language doesn’t make you a bad person, it just makes you a person. But if you have the privilege to change your vocabulary for the better, then why not try? The more conscious we become of the disability around us, the less we are likely to stigmatize it as something to be fixed and to look at it as something that is. So this is really important in the world of disability justice and disability education that’s really gone up to the academic level now, is that we don’t make identity assumptions. And this is also in in my queer world. This is very, very true if things change very, very fast. So in the ‘80s and ‘90s during the AIDS epidemic, this is when organizations first started to move away from using the word handicapped. Now in Alberta you still have AISH, which is you know, has the word handicap in it, which is the disability support payments through the government. If you want to get involved, get behind that. Get those letters changed, yeah, because it’s 2023. I’m a little, I’m a little gruff today, but strong opinions lightly held.

So we started to move away from the word handicapped and embraced what was referred to as people-first language. Instead of defining people by their disability, the movement sought to focus on the fact that people with disabilities are first and foremost just people. So this is where you will hear sometimes a preference for a person who wants it to be said a person with a disability instead of a disabled person, but the most important thing is to just ask people. Some individuals prefer Deaf, capitalized instead of people who are deaf, or people with loss of hearing, and today the best strategy in both the queer and disabled communities I’m in is to ask people how they want to be addressed. Just ask and if you make a mistake, genuine apology. This isn’t about your opinion. It’s about how the other person feels.

So I would argue that I am part of the disability culture, and our values are, not only mean the world to me, but how I try to move through the world. It’s an acceptance of human differences, a matter-of-fact orientation toward helping and being helped. I would say that’s probably our biggest difference is that if a friend phones me and needs help, I just do it. I just assume I’ll have time for the rest of the day. If I need help, I have a big community that I can resource, really good friends that I can call for the two-minute conversation if my brain isn’t thinking clearly, or if my emotions have hit bottom, and it’s just all, it’s not an organization that you can go to. I talk a lot about grassroots organizations, and underneath the grassroot is dirt, and the dirt is the real, the real, and there’s this is probably my favorite thing about having disabilities is that I have to resource my myself that way, and I also resource others. It’s a tolerance for lack of resolution or cure and dealing with the unpredictable. So many of us, in living with various disabilities hack our way into mainstream spaces. I hack my way into having some influence on arts and culture by being a consultant. I could never work for an arts organization, they could not accommodate my needs, but by being a consultant I can answer to more of my brains needs and be of use in in ways that don’t have me working 9 to 5.

A sense of humour about disability. I wish I had more of that today, maybe it’ll pick up as we go. Skill and managing multiple problems, a carefully honed capacity for closure in interpersonal communication. So that means that I make mistakes all the time. One of my fears about having a presentation recording is that on any given day I could have more or less air traffic controlling to do up here, so I have to just keep grounded. I have little things all around me here to try and pause and breathe and attune and listen to myself deeply and speak the truth.

So I have this list by me to keep in touch with those things. Today wouldn’t have been my pick to give this presentation, but I know how to resource myself, and if it’s only 60% of what I can give my apologies and we can always have conversations after if things aren’t clear, although I can’t make things clear. There. We are also flexible, adaptive, and we have resourceful approaches to tasks and problems. So when I have to give a presentation like this, I do try to gather other people to help me do it, and sometimes that just can’t happen, and I make all my slides yellow on black, because it’s a contrast that my dyslexic brain injured brain can read off the slide, a couple of examples there.

An understanding that needs are different, depending on the level of dependence. Yeah. So I understand that this accommodation that I’ve made for myself may be the exact opposite of what someone else needs. But I had to prioritize myself as the person who has to give this presentation.

Another value that we have in disability culture is interdependence is valued more than independence, the opposite of the value system in able bodies population. Yeah, we know, we need each other that pull us back from the edge again and again. We know we need each other to share resources. We know that we need to share hacks with each other. We know that we need to support each other. We need to be able to hear each other. When we go into spaces that are not either physically or process systematically accessible, so we just help each other out and we know we need each other, and as a culture with a broad array of beliefs, values, and subtleties used on how individuals live with their disability, we express ourselves about how we function in society as with any culture. Yeah.

So, within disability culture is something called disability arts and disability arts are created with people with disabilities or mental illness, that is the academic definition. This includes artistic practices and processes grounded, ensuring that the lived experience and identities of disabled people are conveyed, explored, or represented. This typically means that disabled artists are directors, creators, or main contributors to the artistic process. This was, this is taken from a university website which I forgot to credit, but I will. And I would say that, you know in disability arts, the process and the product are not separable, so we have to meet ourselves and anyone else that we’re working with. We have to design the process from the beginning. And if, we can’t just say, this is the way we’re doing it, and everybody has to be okay with that, so that means that generally our processes in all kinds of the arts, a theatre, visual community, film. We have to go slower to make sure that the needs of people are met, and often we’re creating things and training at the same time, ourselves and others, because we can’t generally go into arts training because it prioritizes endurance. And so we lose a lot of our artists right there at the get go, not being able to keep up to the tyranny of workaholism in the arts. But I have some friends who have gone through really rigorous training. And yeah, and that does come with a price.

So Adrienne Maree Brown says that art is not neutral, it either upholds or disrupts the status quo, advancing or aggressive justice. We are now living inside the imagination of people who thought economic disparity and environmental destruction were acceptable costs for their power. It is our right and responsibility to imagine ourselves into a better future, and I would argue that how we make disability art is coming more and more into the mainstream, and that that the real non-academic way of describing that is, that we centre care that we are. We believe in mutual aid, and that we have to put the care of people at the centre of making over and above artistic excellence. And when we do that, it’s a longer term to when the aesthetic might be of a value that’s considered artistic excellence, but that we build slowly and that we support each other to be artists. My book is an example of that, took me a long time to get my book, but I was supported all the way along the way about, needing to do things differently and finally figured out that with the help of many, many people.

So we’re person-centred. It’s a move, disability arts has its historical roots in day programs that you will still see, and that’s fine. That’s a community level of art, and that’s a great thing for everyone to have access for. But what disability arts is trying to do now, disability justice in the arts, is move towards developing artists, so giving artists opportunities to come in at the at the community level. And if there’s drive and desire and talent to help that artist develop in the same way with the same opportunities, the same learning, with the same mentorship that artists who can access formalized training would get.

So to do that we’ve been adapting process and leadership models. One size fits one. Calgary has a number of great examples of this – Inside Out Theatre. I’m sure you know Col is one of my best friends. So this this is, you know, he’s innovating practice, and by inviting on associate artists who have equal say and how things are done. And yeah, that’s a great example. There’s another example in Toronto, the name is, can’t remember right now. And also Disability Action Hall. If those of you who don’t know it in Calgary is the best example I’ve ever come across in North America, of centring people and hearing them all out, and then deciding what they want to use art to do in order to bring change to the world and Colleen Houston is still running that check it out if you get a chance.

Disability arts is in a, at a crossroads where you know, because we come from the day program where community art was considered part of what could be offered in this program. We are standing up and saying not everyone is an artist. Everyone can make art, but we’re trying to recognize and develop talent outside of traditional training and mentorship systems. And this has been very problematic and interesting, because you know, a lot of people still see persons with disabilities from a charitable perspective, so we’re going to help those people. And you can see a lot of disability arts programs that aren’t run by persons with disabilities, and so right away there’s a bias built in there that I’m helping people, my intentions are really good, but if I’m not really from the lived experience I’m gonna be asking people to probably join systems and ways of making that have been around for a long time. And that means that I’m gonna get the people that can come into that system and make in that way, but I’m gonna lose a lot of people and in disability culture we don’t want to lose anybody. No pilots, we’re not NASA, no test pilots.

Yeah. So this is what I work in inclusive design, which is just essentially allowing individuals with different identities to feel they belong within the group because they are valued, relied upon, welcomed, and empowered. So a lot of what you will see in disability arts is the centring of relationship, so that means we tend to work together for a long period of time. Unlike in the theatre community that I work with or film communities, a lot of it is project-based. You work with people for 6 or 8 weeks, and then you never see those people again, whereas in disability arts we really understand the building of trust and learning each other, and the building of craft and kind of double dog daring each other requires that we stay interdependent and in relationship to each other. And I would say that that relationship value is not really seen in mainstream arts. Not much.

Sins Invalid is a theatre company of Black and brown people with disabilities who have disability, 10 principles of disability justice which I’m not going to even open up here, but it is in the resource later, and it just shows that Sins Invalid has been around for a long time, and a lot of the grassroots, organizing and disability arts has been around for a long time, and then it became, you know, an area of study in university. And it’s always really important to take the learning from the universities, of course, but also to remember that the dirt and the grass roots have been saying these things and knowing these things for a long, long time, and to always, yeah, research the source.

These are just principles of inclusive design, nothing about us without us. So that refers back to the disability arts, communities that are run with people without disabilities, virtuous cycles and one size fits one. Virtuous cycle means we’re trying not to do harm like a vicious cycle, so that’s when we talk about the interpersonality and the interpersonal risks that happen. We know we have to take care of those right away because we don’t want anyone to be pushed out of a process.

Yep, here’s my favorite question. What is this moment asking of us? At the end of the day. I think this moment is asking us to foster a sense of belonging among individuals with all different cognitive styles, backgrounds, demographics and more. And this starts with trust that, believing that we live in a tyranny of rationale, and that is one way of thinking but that we can all benefit from other ways of seeing the world and moving through the world.

To develop systems of creativity that are designed to respect and include diversity and human variability at every nested level. That’s corporate language – nested level. But I want us to commit to a society where it’s possible for people with a full range of human difference to participate and contribute and express themselves artistically. Why? Because throughout civilization there have been attempts to corral and tame the diversity and complexity of people and find ways of dealing with us as a more manageable, simple and homogeneous mass. There have been many efforts to prune the diversity by eliminating weaknesses and deficits, and thereby strengthening the species isn’t evolving and advancing our species, assisted by Darwinian survival of the fittest.

Yeah, sure, that’s one way of going, but that will end all innovation, there will be no disruptive and resourceful new responses that will emerge to challenge and create dissonance. And right now we need people who see the world differently who think of the world differently, who understand the value of all the disability culture values especially interdependence. So we can grow comfortable and complacent. But we would not move or grow individually or collectively, as a society. and this is the person who was crazy enough.

Helen: Can folks hear me?

Angele: Yes, Helen, go ahead.

Helen: Oh, thank you. I think something has happened, at least on my computer. I’ve lost JD. Are others experiencing the same thing?

Angele: Yes.

Helen: Okay, I’m going to text them. And oh, they just texted me and said, just lost connection. I’ll see if they can rejoin.

Angele: You’re good to go.

JD: Okay. So Jutta says if we help to develop a society that responds respectfully to human variability there will come a time when we ourselves benefit from that respect. If you prefer, this can be seen as a form of selfishness. We can also see it as enlightened self-interest. It’s an investment in our long-term interests and in the interests of our children, it is a way of preparing for the unpredictable and the unplanned, which we’re very good at. I’m not even, you know, Internet failed. There we go. So bottom line, what is this moment asking of us? Don’t try to fix disability instead fix the oppression. Thank you for your curiosity. I’ll make sure that CADA sends all these links out.

That’s me. Yeah. So what is this moment asking of us in terms of this idea of Ableism? I’d like to have a bit of a conversation about that. I also had asked some artists to come to maybe give a response. I can’t see if they’re here. Hang on, I’m just going through.

I don’t think so. So. so we I can never see anybody in this kind of presentation. Is that how this works.

Angèle: Maybe. But we would have to set you as co-host again. I think you’re not host at the moment.

JD: Right? So I I’m asking if people could come on camera. That’s what I’m asking if you’re able to. If you are desirous, I would love to see humans. And if you’re not. That’s all right, too.

Oh, I feel enormously better suddenly. Hello, everyone. So I wanted to give the option if people wanted to, I’d really like to have a conversation about this idea of Ableism, and why it is not at the same tables as other EDIA concerns. So I think that yeah, I’m really curious about people, where people, what resonated for people in what I said, but more importantly, this idea of Ableism and Saneism and when we think about how easy it is to keep out of conversations with other isms. Racism, feminism, what are the curiosities about why, this seems to be so far behind that we know what to do, and we’ve known what to do for a long time, and maybe you know personal, what feels hard, where to begin anything that people. So I wonder if you want to do that in smaller groups, or there’s enough of us here to start a conversation and see how it goes. How are people feeling about that?

This is where Zoom sucks.

Well, are there any? Did anything resonate, resonate for people, any questions, any thoughts.

I have a Helen MP raised hand. Raise your hand or wave or put it in the chat. Yes, Helen.

Helen MP: Yeah, I don’t, I don’t know why, to answer your big question, but it’s so true. I would say that it feels to me like accessibility is always an afterthought and I don’t know why. When you look at that iceberg model and see where actions come at the top, and mental modes come at the bottom, and ideas of things, I don’t know how we dig down into that to surface accessibility. There was a study done last week, I believe I heard something on the news about a study done, and something like 30, only 35 percent of buildings in Calgary are accessible. That’s the physical accessibility, but with all accessibility I don’t know why, but it is very, very deep, and we seem to, I know that I’m certainly guilty of this, I’m trying to learn better, but thinking of accessibility first as opposed to accommodating after the fact. So that does seem to be a common practice, and I don’t really understand what’s behind that. But I would, I would agree that it has taken a longer time to get there on the disability culture journey. So I know it’s nothing, I haven’t said anything enlightening, but I just wanted to concur that I certainly feel that as well, and it’s a big curiosity I have, too, which is why it has not surfaced sooner to the forefront, and it always feels like an accommodation or making something after the fact as opposed to starting there. That’s my final thought.

JD Derbyshire: Yeah, thanks, Helen. I think that, you know, thinking of accessibility as like accommodation, right? So accessibility is a kind of…

Angèle: I think we just lost JD again.

Helen MP: I think we did. I’m going to, Col, do you want to go ahead, or should we wait till JD Is back?

Col: Hey, folks, Col speaking. I think I could probably share my thought largely, because… Hi, folks! My name’s Col. I work with Inside Out Theatre, and JD Is one of my best friends, and we talk about this all the time, so I feel like I could share and JD will jump in when they’re back because they’ve already heard what I have to say probably. Thanks so much. Also, oh, it’s recording. But I’ll say this while JD’s gone. Folks we here in Calgary are so lucky that JD has spent so much time working in our arts community and working so hard to make it better and healthier and just kinder and nicer so I’m just glad to see all these faces, too, because I love JD to death, and I think we’re all just so lucky. I’m gonna offer a couple of reasons why I think Ableism is still oh, so present. Hey JD – one is because I think for a lot of people, they don’t think that they’re wrong, or that the opinions they have are wrong, they think that it’s right. They think it’s right that that folks with disabilities aren’t super capable and need to be taken care of at best, at worst, our burden and need to be taken care of in the most efficient mechanical way possible. But fundamentally compared to you know, I think it’s quite similar, not quite similar. It reminds me of like fat phobia or body size discrimination, another oppression out there that people just still actually believe, they think they’re helping by shaming folks, or they think, it’s someone’s fault, or it’s a moral failing to be fat or disabled so I think that’s a big thing. The other one I would offer is just a major lack of proximity that a lot of adults have to disabled folks in their life. Like after you graduate school and if you were in a school that didn’t have a Special Ed class where everyone was kind of tucked away, but if you hadn’t integrated school, you may have like had a relationship or gotten to know someone with a disability. And then, after you graduate, I think folks with disabilities are so secluded, they’re so shut out. There’s such a lack of chances to participate, to belong, that many adults can go through many, many years and never have a conversation with someone disabled, let alone make a friend or like have a meaningful relationship. So I think that lack of proximity also just enables those ableist beliefs to continue unabated. That’s the end of my thought.

JD: How did I know you would just take over like that when I blipped out? I mean, this is such an example like we planned this to just show the interdependence. I would also say that disability justice has never had a moment. We don’t, we’re not gonna have a moment. We kind of almost had a moment in Covid where people were, suddenly understood what it’s like to be, to have all that loss of freedom to be at the mercy of some pathogen that was out there to have everything that we normally do taken from us. But that moment disappeared. And what you see in disability justice advocate is, most of the people that I started organizing with are no longer here, right? And so the energy that it takes to organize and also make barely enough living and take care of your needs and take care of everybody else, makes us a force that organizes and then goes back and organizes and goes back. So we’ve never, we almost had a moment but unfortunately we didn’t get it. That’s my final thought.

Anyone else have anything on this that they’d like to say or resonate. Laura. I see, Laura. Thank you.

Laura: Yeah, thank you for the presentation, and to CADA for welcoming everyone and gathering together for this. I’m a musician, but I’m also right now working as a librarian at the University of Calgary, and this topic of access is something that I think all librarians think about. And it’s been an interesting journey to see just where that’s at this specific institution. And going off what, without delving into a very specific example, going off of what Col, you said, about this lack of personal connection, this is something that has yeah, a recent example with a student, this has been brought to mind and speaking to accessibility services on campus. It’s a pattern where if a professor has someone with different needs in their classroom, they often will become a very fierce advocate. But if you happen to not, you’re not thinking about it, you’re not thinking about accessibility of your materials or your classroom physical infrastructure. And on one hand, this is both, you know, understandable, but I think that is a really tough one to challenge without some sort of tokenistic approach. And one thing, that that quote you shared JD, about from Jutta, about this like enlightened self-interest is something that has always, I’ve always observed, even in learning about the history of disability justice, and advocacy from the twentieth century, and the example of curb cuts coming from you know, almost guerrilla activism from within the disability community, but then, Oh, this is also helpful to parents with strollers and skateboarders, or who whoever else? And I think I guess it’s a question that I’m posing to anyone who has a response, this, that enlightened self-interest in forming universal design is something that to me, but I also think it’s a way of closing that or bridging that gap between, you know, does it have to take a personal connection? Personal connections are great, with as many different types of people as possible, but, and I think we see this beyond just disability culture and community, you know. I’m sure you guys can fill in the blanks with your imagination and memory of this, but I’m wondering if there, if you see a downside? Or if there’s room for seeing universal design, universal access? Does that usurp the validation of a specific disability culture? Or can they kind of can there be a coexistence there?

JD: Yeah, thanks for your question, Laura. I agree. It’s sort of the business case. It’s sort of the capitalist case for inclusive design is universal design. And we live within capitalism. So whatever the change can be it’s through, Siri was also a disability use first, and then came over into our world. There’s many contrast on bank machines, you know, lots of things that benefit us all. I think the real thing, though, is when we’re using the economic case just like we do with the arts, you know, like, that’s an important argument. It gets people on board how much money the arts generate. But we still have to centre the care of the artists, you know, because we, without art without artists, we don’t have art. So it’s the disconnect of making sure that we understand that for those of us, without the, that there’s a difference between need and preference, and that’s often in the university setting where you’ll get a lot of pushback from professors at that level because it feels like a preference if a person is saying I need high contrast slides, I need to have my exam, it’s not a preference, it’s a need. It means that if that need is not met, that person can’t participate fully. So I think you know, as with all good things in the tyranny of rationale, we resist this or that, and we work with all those nuances. But I’m all for universal design, and a way to think about that is, you know who designs the world according to their specifications? I’m sure we’ve all experienced here the difference between trying on a shirt that really fits, and one that doesn’t; sitting in a chair that works for us and doesn’t. And when you think about it, all these things were made for standardized bodies and school, you know, K to 12 still follows the format of it was originally designed to train factory workers, you know, how do we get people to be able to sit still and be okay for 7 or 8 hours in a row? So you know, we need to kind of keep these conversations going, and I and I and you know, at the library, like the, you know, fronting resources side by side about disability justice, and universal design, that’s a really great idea, because any entry point we can give for people to get on board the better. Final thought.

Laura: Thank you.

JD Derbyshire:  Any other questions. I have another prompt if we if we’ve run out on this one. But curiosities, comments? I see Sarah.

Sarah: Hi, thank you. JD, yeah. My name is Sarah. Hi, everyone, and I’m just thinking it might be appropriate now to mention the fact that think what a lot of folks with disabilities experience is.

kind of like this idea of masking or hiding your disability, and then that just kind of becomes the standard and easier to a certain extent, for, like everyone involved, even though I’ll put that in quotation marks with my hand here, that’s “easier.” So yeah, I just wanted to kind of introduce that to the conversation. This idea that masking or hiding your disability can sometimes be advantageous just because of the way things are so I wonder if that how that ties into a slowing of a progression towards more equity for everyone? That’s the end of my thought. Thanks.

JD Derbyshire: Yeah, thanks, Sarah. I can say that, you know, like other movements, solidarity is really important, and so I can reveal safely in just about every place I go into knowing that the reception might not be the same, and that when I come out of that I’m resourced, I have other people to talk to about my experience inside that. So I have to go into a lot of areas where I disclose everything I disclosed at the front of my talk here, and it’s not it’s not that, it’s I wouldn’t, I don’t think people would consider it a violent experience, but I often absorb the violence of having to educate people from a beginning point in their journey, and that has a toll. And so to be able to do that work, I’m resourced, Col is one of my conversation partners, I have about 9 other conversation partners so that I can I know after this I have someone to talk to, to make sure that that unmasking that you talk about is I’m gonna ground again, I’m gonna take care of myself. I’m gonna know what to do. So it’s really hard. That’s why the value of interdependence, it’s really hard to be the one person of anything in a room that’s gotta speak up to. And so, you know, trying to, you know, when CADA, for example, the community working group, when we invited a Deaf artist onto the working committee, right away, we knew to invite another so that there wasn’t just one of anything. And so as we feel resourced in our communities, then we can put the masks off. And also, it’s not unlike my experience in the queer community. We don’t get to out anybody. There are all kinds of reasons for masking, and there are other, my perception could be you’re fine go ahead, tell them, and that may not be another person’s reality, and that’s really key to respect. The stigma is great. And this is an opinion, it’s recorded, but it’s a very strong opinion, you know, things like Bell Talks campaign drive me crazy because it’s an outing without support. So everybody calls in and says, I’m this, I’m this. I’m this, and 5 cents from that call goes somewhere I don’t know where, but 5 cents for every call goes somewhere but that’s not creating community because it’s an outing without connection. And so, you know, if they fronted people in conversation with each other, here’s 10 people to call and be on the phone all day. I don’t know but it’s just a resourcing. And why we say we centre care, relation, relation, relation. So it if you know if you’re lacking community and resource, you know. Drop us a line. And in Calgary, you know, there’s lots of dirt ways to connect. And it’s just essential to have like a support group, but, you know, like not run by the agencies. We take care of each other. Does that? I don’t know if that answers your question or your curiosity but thank you for bringing that up. I see a Maureen.

Maureen: Hi, Maureen speaking. There is a question in the chat, so I just wanted to make sure it’s visible to you. I don’t know if you want me to read it out, or if you just want to respond to it JD.

JD Derbyshire: Sure I’ll read it out. A person is wondering if invisible disabilities also plays into why EDI has not done enough. I feel like a lot of institutions focus on accessibility in terms of mobility devices. So new buildings tend to account for that, which is necessary, but not so much thought is given for disability and what beyond what can be seen.

Yeah, this is when we talk about the oppression of systems and processes that feel completely rational and logic and open all, but there’s a fish of inclusion that I like to talk about. In the front part of the fish is the people that the systems work for, which is generally all the people with power, who designed the systems in the first place, usually well-educated Western people. So you can even look at granting, you know, granting, still, you know, CADA does better than other funders, but it still has a slant towards academic language, wording things that are very what? What does that word mean? Using forms that are online, needing certain criteria to be considered professional. All these things are the middle part of the fish, and the middle part of the fish is myself, and lots of people that I know and work with, we know enough that we can help each other navigate those systems but it takes infinitely longer to do a grant application, or to figure out how to do something online or whatever, but we can resource each other to make it. And then the tail end of the fish is people who can’t negotiate that at all. And so this is the huge category of cognitive difference. Right?

We see a term that’s come into play in the last decade or so, neurodiversity, which didn’t exist 10 years ago, which is awesome. But if you’re, if you’re not, only you’re having to grapple with the with the grant portal, and you’re having to fight for changes you might just be able to resource yourself well enough with friends to get that application in. But then the work that it would take to get a funder to actually change that way of accepting grants might be too much of a burden, and in terms of art making you, you would put that to the side so that you could continue to make art. So it it’s a real and, as was spoken before with Sarah, you know it, it’s that we mask we, we will fake it. We’ll resource ourselves, and then we’ll gather strength and try and bring change, you know, organizing together but then we’ll get fatigued, and that thing might not ever change. So I don’t know what the answer is there, except that again, proximity. When we feel resourced enough, when we’re in community ourselves, we can speak of our differences, and then go outside again and get the support we need for that. But it’s very hard to reveal to have the burden of revealing. And that’s also true, not just cognitive differences, but chronic illness, chronic pain, all the things that we cannot see. It really puts the burden on the individual. And if, and you know, to imagine a world where that isn’t, it’s a given. If I say I need a mental health day before I crack, it’s just a given. If I say, I don’t have to say I have chronic pain, I just need the week I need to rest, and we have places that are like, okay, great. No questions asked. Of course, that’s not the way it is. So that stigma is like a vicious cycle because we’re afraid to reveal, and when we don’t reveal, other people can’t reveal. So it’s just, you know, it’s a tricky, tricky spot. I hope that helps in some way.

Maureen: It’s Maureen speaking. There’s another one in the chat as well there. Just touching on making spaces. Feel safer for folks with disabilities. I’m sure you can see that there now.

JD Derbyshire: Okay, so I see the question topic of safety. I imagine personal, social, physical safety is likely in folks’ forefront of thought. What are some primary actions could take in order to make it safe, feel, a space feel safer for folks with disabilities? Example, a rehearsal room? Col, I know that you just put up a production with a lot of different folks with a lot of different ways of working and needs, and I wonder if you could talk about the process if you’d feel comfortable talking about the process that Inside Out uses at the beginning of rehearsals or and the play that just happened.

Col: Yeah, thanks. JD, Yeah, folks. So the show JD’s mentioning is a kid’s play that we just did with our friends at Quest Theatre, and it was lovely, it was called Most Imaginary Worlds. I’ll tell you a little bit about our beautiful cast, because a prime rule is one size fits one like what worked with this group of folks, excuse me, what we did with that show is not the same thing we’re doing with a rehearsal that starts next week. So for that show we had this beautiful cast of five actors, most of them were disabled, specifically autistic, as well as we had an autistic stage manager and disabled designers on the team. I, when I was rehearsing when we started in September, was in one of the gnarliest depression dips I’ve been in in many years, it was an element in the rehearsal as well. So a couple of things that we did. Oh, actually, this is so funny! Cause I have it on my other screen. I’m gonna share something in the chat that anyone is welcome just to check out because generally, you know, we think of like, what do we have to do before people enter the room? And what do we do while we’re in the room? The before thing, so in the chat I just posted a link to, we’ve this, we call it our healthy process questionnaire, but as soon as someone is booked to do a show with us at Inside Out as soon as they’re cast, or they’re hired as a designer or a facilitator, or whatever they get sent this questionnaire, which is just like, a pretty, it’s a very simple, blunt instrument, but just a chance for folks to share and tell us what they need to be able to have a good healthy process and it includes some things that are kind of, you know, capital D disability, but also includes things like cultural health, financial health. Excuse me, so we get that sent out as early as we can, and then we go over it with the project leadership, whoever’s gonna be running the room, and we go through it, and we figure out, how do we, you know, get everyone what they need, and if there are conflicting needs, how do we solve that? And we usually solve it through conversation. A key point is to do this as early as possible, so that you have the time to re to make new plans or to change your plans. Or ideally, you get this before you’ve really started making too many plans. So that is a big kind of foundation for our process.

A couple other things, I think leadership in the room is really important, and the actions of who is seen as the leader. And that’s not always like the capital L leader, you know the director or producer of the show sometimes. That’s an actor who is maybe more experienced or very different times. That’s the stage manager who everyone trusts. So whoever the leaders are in the room, I think their actions are so important. You know, in that process I was describing, I think I was the leader in the room, and it made a big difference for me to come out and say, like, here’s one my mental health set, and here’s how it’s gonna affect our working together, excuse me, for a bit, which include being like my brain, slow like, it’s slow and foggy. So I’m gonna talk slower and take longer to give notes or to give reflections. So if I say, Hold on, that’s it because we were working with a lot of autistic folks that read social cues differently than I do. It was really important for me to say, like, I’m sad and depressed generally, I’m not mad at you, which like made, which because I didn’t say that for the first couple of days, and I think our stage manager thought I was mad at him all the time, because my face generally looked like this which was like uncomfortable. And so like I just started reminding him like on the hourly, like, I know is my face. Don’t worry. It’s not you. It’s my face.

Lots of pre-planning. How you handle the first conflict is another big one, because it’s just gonna happen, and it doesn’t mean it’s gonna be like a fight or a gigantic conflict, but what happens when things go wrong is another one, and then the other one, I’ll just say, is that it takes time. Like, you know, most folks, a lot of folks aren’t gonna feel safe in the first minute. I’ll say this for myself, you know I’m like I’m a cis white man who’s non-disabled in these rooms a lot, sometimes with people I’ve known and have worked with for years and years and years, and have good relationships sometimes with brand new folks. A lot of you are listening to me right now who don’t know who I am, and you may take what I’m saying with a big grain of salt, which is good, and so also, like trust and safety take time and I think it’s based in relationships, and how people are treated. And you can tell people it’s safe, you can tell people they’re welcome, you can tell people that it’s accessible, but until they like experience, you know, kindness and access and respect I don’t think it’s really safe. So it’s also just taking time. That’s where I’m gonna stop my rambling. Thanks for thanks for asking JD.

JD Derbyshire: Thanks, Col, and another practice that Col does, and we do a lot in disability arts is double casting, so that if someone’s, you know, conditions, causes and conditions make it impossible to show up for a show or rehearsal, they know that they’re not letting down the whole production and it also trains other people up as we’re as we’re going. So thanks for all that you do, Col, that’s Inside Out Theatre if you don’t know about it. They also run the Good Host program which is helping accessibility for audiences. It’s really worth taking a look at. Anybody else have a question? Query, curiosity?

I’m curious. What brought people here today to this town hall out of the goodness of your heart. Why are you here? Put it in the chat. You could let me know.

Red: Everyone. I guess, for me, what brought me here was after recently moving back to Calgary from doing a two year stint in Saskatoon’s master program is that is feeling very needy of disabled artists and community that I didn’t have out there, especially with them, especially what we were saying earlier about resonating with artists are almost measured by endurance, and how often we can perpetuate burnout and almost pushing aside our own needs as you’re speaking on to get the things done to other people’s measurements of success and accomplishment, especially in the arts. And that’s often, was very hard for me, and it often gets, I exclude myself a lot from artist situations and events, because it’s hard to kind of find your own community when everyone’s often invisible. So it’s nice to sometimes be around folks and not too many expectations on you. You can just exist as you are, without too many demands. That’s why I’m hopping around.

JD: Thanks, Red, it’s nice to see you again.

Angèle: We may have lost JD again once more. Oh, and you’re back! But you’re on mute. There we go! That’s why.

JD: I’m like this is really getting weird now. I’ve never had psychosis where I can see the zoom room, but I’m not actually on it. So you know, thanks for that. I was just reading some of the chat. Yeah, it really is, I just saw a note there about partnerships and community, it really is asking you to notice absence rather than presence, You’re not gonna necessarily see the disability of the persons, but there’s lots of organizations, Disability Action Hall, for example, you know, if you have, if you’re a presenter, you know, inviting Disability Action Hall to an event, they’re gonna very quickly let you know what’s accessible and what’s not.

The idea of relaxed performances that happen in theatre in other events, you know. The idea of disability arts is often outside of art, you know. So with my book I’ve been lucky enough to do some writers festivals and things, and been hanging out with other writers, and clearly, I did not come up the way they came up, and it’s really fascinating to me, the response to the book. And really, I would say, it’s like visual artists have a term called outsider artists, and I’m definitely outside literature artists that somehow snuck my way into literature. And the conversations are generally around how I built the book and the process of building the book, and how the book looks is completely different or very different than standardized forms, right? So I understand that that’s a gift of my brain to allow a more fragmented plot which I think, holds together, but process and product, you know. And I think that when I’ve been invited into these mainstream spaces and I get to speak to my background in in disability arts and being funded as an artist who got to figure out how to make things differently, then the craft has reached a level where people will get behind that. And so, you know, I turn around and you know I had a mainstream theatre practice and after brain injuries couldn’t continue to do that. And so I came back in through disability arts. And then I noticed when I when I figured out how I could make that work for me I just started bringing people with me because they weren’t included right? So casting a person in a wheelchair, you know, and the role doesn’t have anything to do with being in a wheelchair, starting to build projects where we centred a different perspective first. So we did one called installing the text, which was blind artists built the text or the set first, which was all tactile, and then we installed writers in to write for that. And just thinking of these, you know aesthetic needs as creative parameters and like, and the artistic possibilities are endless. But as long as we think this is the superior way of doing things, we miss all that other richness. Final thought.

This is supposed to go to 2, but I would, I would offer that if we feel full that it is a great disability culture thing too. I would give you the next 23 min to take care of yourself and whenever we receive new information, you know one of the things we know as, well I know with what I work with is, my nervous system doesn’t know the difference between talking about things and experiencing things. No one’s nervous system actually does. So, you know, whatever you’re feeling right now, I imagine, for me, I’ll just use myself an example, it’s quite a mix of things. I’m so grateful to see you all in your aquariums. I’m a little, I wish I would have been a little… no, I’m fine, I am the way I am today. But I am grateful, I’m a little buzzy. I’m gonna go for a walk in the rain before I do other work. I’m quite emotional, because, as I said at the beginning it’s always hard to know where to enter these conversations, and I always worry that I’m going to be a bit too angry. So if my tone has been a little sharp, sharper today than maybe I would have liked, I’m not gonna apologize for that, but I am going to say that I am approachable and if any questions come up afterwards, any curiosities, I invite those conversations. Red, get in touch with Inside Out Theatre, and that’s a good portal to other communities of artists that might be able to support you and feeling a little bit more welcome.

Thank you. Thank you, CADA, for giving a shit. Oh, we’re recorded and yeah, and thank you all for giving an hour and a half of your time to a lot of talking. I wish we were in person and could have some little sandwiches without crusts right now and continue talking. But yeah, my email is, I can’t remember what my official CADA email, I have a CADA email. And also you can reach me at, I’m going to just say it jd.derbyshire15@gmail.com.

So shall we hand it over to self-care? Will anyone come after us? Will we be all right?

Okay, I’m gonna hang out a little longer if anyone needs to ask me anything with a smaller group. But thank you so much for your time.

Take good care, everyone.

Helen: Thank you, thank you so much JD, and I appreciate you so much and learn something every time you speak, and for those of you who have to leave, just to remind you that the Holiday Open house at Calgary Arts development is next Monday, from 4 to 7 at Bar 1912 on stampede grounds. That’s on our website. We’d love to see as many of you there as you can come and JD, thank you again so much. If anybody wants to stay and chat, please do, and I will just stop talking now.

Angèle: All right on that note. This is Angèle speaking. I will stop the recording and thank you again JD.

JD Derbyshire is a writer, comedian, mad, activist, performer, playwright, theatre maker, inclusive educator and innovator. In their playwriting, performance and essays, they have tackled some deeply personal and complicated subjects like queerness, gender, confusion, institutionalization, addiction, disability culture and abuse with humility, grace and humour. Learn how to navigate tough feelings and use them to your advantage in your work and life.