Artistic Community Care: Video and Transcript

Patti Pon: Hello, everybody. Welcome to our first equity townhall of this series. It’s a series of six town halls, that we will undertake over this next while. Today is our first one, and it is on artistic community care, which I really think is quite important and quite timely. We’ve all been through an incredible time, and I don’t necessarily mean that in a positive way. It’s been a great time of change in what is already, an ever changing. The pace of change just feels like it gets faster and faster, as each day goes by. And so particularly in the arts community, I think many have had to endure, so much change and trauma and difficulty, and that we know in this time that more and more, we see the spectrum of the impact, and the severity that that change and that trauma and that harm can cause. And so I’m very grateful to Toyin Oladele and JD Derbyshire for helping us to curate these six town halls and particularly to start with us, to start us off on, on this first one.

So, before I hand it over to, Toyin and JD, as is always our way with any kind of online or in-person, public conversation or gathering, we always want to acknowledge that, where we come from. And so I am speaking with you today from the traditional and ancestral home and territory of, the Siksikaitsitapi, the Blackfoot people, the Blackfoot Confederacy, comprised of the Kainai, the Piikani and the Siksika First Nations who in 1887 were signatories to Treaty 7, along with the nations who also call this place home, the Tsuut’ina  people and the Îyârhe Nakoda people comprised of the Bearspaw, Chiniki and Goodstoney First Nations. Of course this place is also home to the Otipemisiwak Métis Government Districts 5 and 6, and all of us who have the great privilege and honour of sharing and calling this place home and carrying in its stewardship. Before many of you joined us, we were just talking about today being the first day of new water restrictions, being implemented here, particularly in Calgary and surrounding areas.

And it reminded me about how precious water is. And I just came back late last night from Phoenix, where the hottest day hit 114°F and the coolest day was 105 degrees. So when I come back here to almost 80°F, I’m freezing. I can’t actually believe I’m wearing, like, bare arms right now. I have a jacket behind me, but they are in the midst of a very severe water shortage.

So imagine a water shortage at 114°F. And here we are, in this place where the two rivers converge and have been since time immemorial. And I think it was just a really, very visceral reminder to me as I was putting my water barrel and my pails out on the patio of how grateful I am to be in this place and how special it is that we actually have water to begin with. And so at 25% reduction in water to me is, you know, kind of a reasonable adjustment I’m willing to make. And then on top of that, I hear that there are some of us in this conversation circle today who already are conserving water significantly, not necessarily by their choice, but because of a system that does not allow for them to have the opportunity to use water in a way that is more of their choice than somebody else’s.

And so, so appropriate today, I think in light of artistic community care and how we actually care for ourselves and how we care for each other in this community. So on that note, over to, JD and Toyin and to start us off with our first equity townhall.

Thank you. Final thought.

Toyin Oladele: Thank you very much. Do you think that was very helpful? Thanks. And thank you for joining us today. Everybody, I would like to really welcome you to the very first equity townhall session. I’m so super excited, myself and JD with been working on this for a while, and big thank you to all the staff that have also contributed to, you know, where we are today and for supporting us. I’m really thankful to everyone.

Before we start, I just wanted to quickly let you all know about the series that we have in store for you and when and where you can find them so that you can register. And we had fun last year, and by fun, I mean it was a great time learning and bringing community together and just learning from each other and listening to amazing stories. And were really hoping that we can have that again this year.

First of all, I’m going to put the link in the chat and, where you can find all the other townhall sessions that I’ll be referencing quickly. So this is a very first session happening today. The second is next month, just in a couple of weeks, September 16^th, and, it would be our Artists Reverberate Trans Rights. Before we even continue, let me let you know that we decided or after, you know, coming from where we were last year, this year, these townhall sessions, we focused on the theme live action heroes. So we would be chatting with, talking with, having conversations and just enjoying stories of people who are contributing to the arts sector through the lens of equity, one way or the other, in different capacities.

And so today, it’s, our topic is We care: Artistic Community care plans for self and others. And then in September, we are going to Art Rights: Artists Reverberate Trans Rights. And it’s happening 12 to 2 pm. Same time for all of them, September 16^th. And session three, it’s Imagining the Unimaginable. Equity for newcomers and immigrants in the arts sector. I’m very excited about that, as you might guess. It’s October 28th and it’s 12 noon, same time. And then, the fourth session is November 25th. Very interesting dates, and it’s 12 pm, same time, and it’s focusing on Artists as Changemakers. So we’re inviting every one of you. Please feel free to share and spread the word and spread the news.

And then, December, we’re not sure yet, 4^th or 5th. We’re going to probably by next session we will have that firmed up. We would be at the Central Library, hopefully, with the Living a Creative Life Congress. That’s where we’re hoping our fifth session will take place and it’s going to be live from there. We’ll keep our fingers crossed on that.

And the last session for this series is coming up on January 27, 12 noon. And then for the link for that, you might not be able to register for the last two, because they’re not out yet, but very soon they should be. But for others, please, please go on and register. These sessions promise to be amazing. I mean, and just an opportunity for us to learn from each other and grow together. So, that is why I’m going to stop and I’ll hand over to JD. Final thoughts. Thank you. Don’t forget the link is in the chat, please take a look at them and feel free to register. Thank you so much. Over to you, JD, final thought.

JD Derbyshire: Thank you Toyin, and, it’s been great working… Oh, I have a little dog that wants to come up and say hello. I mean, this seems like a priority. Hello, puppy. That’s Aggie. Yes. It’s been great working with Toyin, with this idea of the equity town halls this year. And, you may have noticed Toyin using a disability justice tool. Not something that we need so much in Zoom rooms, but great for live rooms where we allow people to take pauses when they think or speak in their own cadence or, yeah, just have the space to be able to grab some thoughts without our cultural way, at least our Western cultural way of interrupting.

So Toyin was, at the end of her speaking, saying this is my final thought. So you’ll hear that today, and I encourage you as a it’s a one small tool that you can bring into any situation, that helps all kinds of minds, whether they identify as neurodivergent or not. I would argue that all minds are neuro divergent from each other, but that’s another conversation for another time.

The other accessibility ask we would make today is when you do speak, remember that we have ASL interpreters. And so to slow down a little bit, kind of like I’m trying to do, you’ll hear me speed up and remind myself to slow down again. But again, just to offer that again, it helps, people who are, using the language of ASL, but it helps a lot of us.

So a lot of times with these caring things that we can do for folks with disabilities often benefit us all. So, these are some examples in sharing spaces, other examples out there in the built environment are those curb cuts which are originally, for wheelchairs, but they help anybody with a baby stroller, bicyclists who illegally go on the sidewalk and different folks.

So, yeah today’s town hall, came about through conversations with the Just Culture group, which is a group of artists with disabilities, funded by CADA and situated inside Inside Out Theatre, that we meet together sometimes formally, more often informally, all around these questions of self-care, which is super important to know what you need yourself, but then also how do we move that out into community care?

So after the pandemic, there arose a term that we’ve always used in disability arts and justice called mutual aid. Because this idea that we put on just the individual being able to take care of themselves is not sustainable because we are social beings. We’re all connected. So a lot of times when the arts particularly fail people with disabilities, it’s because the persons with disabilities are, cannot meet the way the system makes or presents, and so therefore can’t be included in those spaces.

Now, the tricky part with that is that we don’t really notice absence. But there are, there is a lot of absence of very talented artists that we don’t see in our mainstream spaces because it’s such a subtle, subtle, nuanced dance between who we really allow and who we don’t. So, I’m going to put a slide up on the screen I hope.

Can everyone see that? No. How about now?

Angele Bleakley: It’s coming up. Yes.

JD Derbyshire: Okay. It’s not the prettiest one. I can’t make the whole screen do it, but you’ll be all right. I’m going to read a bit of an essay that I wrote for today and a publication in a disability arts anthology that’s going to be coming up. And the reason I’m going to read it today is because very few people will read it in that anthology. So, I wanted to expose the thinking to a few others. I call it Garden Knows — Self-care through imagined talks with stone flowers, Or what Artists can teach us about caring for self and others. And before I do, I just want to read this quote from Kurt Vonnegut, who is an old dead white guy, but he had some wise things to say.

“I was perplexed as to what use any of the arts might be, with the possibility of interior design. The most positive notion I could come up with was what I call the canary in the coal mine theory of the arts. The theory argues that artists are useful to society because they are so sensitive. They are supersensitive. They keel over like canaries in coal mines filled with poisonous gas, long before the more robust types realize that any danger is there.”

So as an artist who lives and works with a disability, I have seen many of my colleagues disappear. And I’m going to read you this essay, because I believe that the craft I’ve been allowed to accumulate over the years makes it worthwhile listening before we get into these care plans. I would encourage you to listen with whatever mind you have today, and what that means for me is I use a practice called echo. And sometimes when I’m listening to something, instead of worrying about getting everything, I will just listen for a way, for things that ring out to me. So, there may be images, there may be ideas, there may be something you haven’t thought of before and just noted in your phone or on your computer, or write it down just as an echo, as a way of honouring your presence for the story, essay. And if you fade off, if you need to go make toast, if you stop hearing me completely, if it triggers in you the need to make a list, it’s all okay. The next 15 minutes or so I just encourage you to not have to get the listening right, to just be with yourself and with the experience in any way you can. You will not hurt my feelings. It’ll be recorded. So, if you like it, you can hear it later. If you don’t, you never have to hear it again. Toast says Nick. Yeah, I mean, do you know there’s a thing here where I live now? There’s a toast bar. Anyway, I think that’s a wonderful thing. Okay, so this is written for an anthology on disability arts practices in Canada that will be coming out in a year or so, but I thought I’d read it for you today.

So, again, relax. Cameras on or off, it’s fine. ASL. If there’s anyone availing themselves of the ASL, and I’m going too fast, interpreters, feel free to speak to me and interrupt me and I’ll do my best to slow down again. All right, story time. Grab a little fuzzy thing. Blankie, cup of tea. Here we go.

Garden Knows by JD Derbyshire.

His ashes are scattered in a backyard garden bed where the tulips are just popping up. It’s been eight years since he died, so who knows if any of the salt and minerals and bits of his skeleton are even there anymore? It’s likely that most of it has been washed away by the West Coast rains or sucked up from previous seasons of tulips to strengthen their stocks or brighten their blooms or carried away by darker hearted squirrels with a penchant for the occult.

Whatever remains of his remains, I can hear what he would say about me coming here to talk to him. Ridiculous. His obituary in The Globe and Mail described him as Geoff McMurchy, a man who blazed a trail for disability arts. I believe he forged that wheelchair accessible trail with his sometimes hot and spicy, fiery opinions, but they don’t mention that.

They do say that he was always an artist. And at 21, an accident cracked him into living life as a quadriplegic. They say that differently too, but so it goes. According to the Globe and Mail. They say he lived the rest of his life making art, supporting other artists with disabilities, and trying to advance ideas of what disability art could be.

But I’m here to talk to those parts of him that they don’t mention in the obituary. The way he could come across as a real A-hole sometimes and not really give a crap about what people thought of him. His slightly irritated directness, his salty, almost surety, his audacious juggling of blunt kindness, his dark humour, his sadness that squeezed him so tight sometimes it made him laugh.

His refusal to live life as a victim, and how he was always calling me out if I leaned too far into that powerless position. I pull my lawn chair closer to the garden bed to talk to those little bits of Geoff I miss the most. The little bits I hope some mad squirrel hasn’t carried away yet. My friend, I’m struggling with two disability arts projects and I don’t really know who to talk to.

One is a project I can’t seem to support an other artist’s needs in, and one is a project I can’t seem to support my own needs in. This seems to happen whenever disability theatre practices merge into mainstream theatre practices. Why is it that the theatre-making machine eventually needs to smash up differences and hide them in a recognizable package of basically the same old, same old?

I hear myself explaining this to Geoff and getting all worked up about how integration just isn’t good enough. If he was still alive, we’d possibly be sitting on the patio outside his basement suite and looking at the same garden bed and the spring shy tulips. I can see him listening deeply and then taking a deep inhale on a joint.

He’d exhale and then, and then with a sly smile, say, what did you expect? And then we would laugh. What’s true is that after his first gruff response, he’d often tell me that it was important to say what I thought, even if the response wasn’t favourable, even if no one else agreed. He would tell me to back off the personal and say what I had experienced or what I needed.

He would tell me I’d bitched enough, and it was time to get down what I thought. So here’s what I promised Geoff that I would tell you: opinions. My opinions, surfaced from decades of doing this work worth something, according to a pile of dirt I had a conversation with last spring. I am an artist who lives and works with disabilities.

I also went back to school 12 years ago and got a master’s in inclusive design. I was invited into the program without an undergrad degree because of my lived experience. What a ride! But that’s another story for another day. All I can say for now is that when one is bestowed with a title, in this case a paltry MDES, I notice that I became entitled, entitled to be invited into conversations inside arts institutions and organizations that may not have thought I had much to say before those three little letters appeared behind my name.

Now I make part of my living designing processes in practice and production for other artists with disabilities. One size fits one. I have been consulting for many years with an artist who wants to direct theatre, an artist who happens to have an intellectual disability to go along with the other talents of writing, painting, filmmaking and acting. As the project he’s directing nears production it is clear that we have lost the intention to support his unique esthetic. It has become about answering to the vision of others who have moved things in the direction of what interests them. While I understand that there is no malicious intent in moving towards what interests the other professional non-disabled actors and artists involved, there is a fundamental disregard for disability arts and what we said we were trying to do.

I try to chirp in about the ways people take over this artist’s work without realizing they’re doing it. People push back against this idea. After all, they are here to help this artist with a disability. This is an age-old problem in disability art and theatre. Able-bodied, able-minded professionals who sign on to help and end up making it look like something that already exists instead of supporting the new form and esthetic it could be. I’m heartbroken because this wasn’t just some experiment. It came about because this artist repeatedly expressed his hurt about previous projects. He was acutely aware of when his words or ideas are taken from him, and molded in ways that he doesn’t agree with. He has had the experience of several successful integrated projects.

He has not been given the opportunity to be in charge of his own projects. In many conversations with me and others, he was clear about wanting to direct his own work to stage it how he saw it, all of it. The words, movement, set, lighting and sound design, the music. That’s what I believe we were trying to do.

We were trying to make work inside the questions. What would it look like if we followed this artist’s vision all the way through? How could we support this? How could we centre his care and protect his esthetic as we move through the various parts of the theatre production machine? What if it doesn’t make sense? How do we keep the focus on developing him as a writer and a director?

How can we trust that his esthetic will be interesting to others? How can we all remember that these questions are at the heart of what we mean by centring an artist with disabilities? I think the creative team believes that they are all equal as creators, not unlike other collaborative projects they worked on. This is not true in this, this arts project. We are here to answer to this artist, to develop this artist as a director, whatever that might look like. We wouldn’t be here without this artist. We are all benefiting from this disability arts funded project. We said that we were here to realize this artist’s vision and that’s it. We said we understood that from the start.

Everything we offer should be in support of that. There is a fundamental distrust of this director/writer’s vision. This is ableism: mine and theirs. How do we talk about that?

The second project I came to talk to the tulips about has to do with my own work. It is with the necessary humility and a reluctant sorrow that I recently called off an upcoming workshop, an eminent production of a play I’ve been working on for three years. The combination of what the show deals with, my unresolved issues with the sanist and ablest nature of theatre making, and an inability to keep my nervous system regulated while doing the work, has led me to this decision.

Once my nervous system is fired up, fancy psychopathology words deregulated, it takes a long time for me to regulate again, especially inside the long hours and many voices found in workshops, rehearsals and performances. In the making and performing of Certified, an award-winning show where I turn the audience into a mental health review board to determine my current state of sanity, I paid a big price for bringing that show into mainstream theatre spaces. I have now come to realize that I was in a state of perpetual hyper arousal for a few years, creating and then touring that show. I was unable to reset my nervous system and walked through the world, unable to get insulation back on my wires. I was in a continuous state of shock.

My therapist suggested that I’m feeling all of this now, because I may be healing from some of my traumatic injuries. It is not without some horror that I grapple with the thought that I may want calm and ease more than I want to be making theatre. Now, when I say I want calm and ease made more than making theatre, I mean making theatre the way it’s always been made.

I don’t think it’s sustainable for anybody. Or the price is too great, or we ask too much of artists, especially actors. Offer us your emotions and vulnerabilities, director, but don’t disturb the short timeframe we have to get this up and done. Don’t ask for anything, especially time to take care of yourself. That’s why we call it self-care, it’s your job.

And here I will risk quoting another dead white guy because it’s so succinctly explains why so many of us got into theatre in the first place. Kurt Vonnegut says, “I was perplexed as to what usefulness any of the arts might be, with the possible exception of interior decorating. The most positive notion I could come up with was what I call the canary in the coal mine theory of the arts.

This theory argues that artists are useful to society because they are sensitive. They are super sensitive. They keel over like canaries in coal mines filled with poison gas long before more robust types realize that any danger is there”. My friend Geoff would not have hesitated in telling me that I was once again being supersensitive. So it goes.

I seldom bring up my super sensitivities in mainstream workshops or rehearsal rooms or performance spaces. This is an easy practice to fall into with invisible disabilities. A word about one of mine. I am a voice here. I say I have voices in my head, but that’s just to remind myself that they are made up. In fact, they come at me from the outside, loud and discordant and mean. Essentially, I am in a room full of screaming people all the time.

They vary in volume and content from day to day, but they’re always there. Whenever I’m working with other people, I am also working to sort their voices through my voices. Ironically, it’s what makes me such a good listener, sometime. In situations of go, go, go or let’s say, making and performing theatre, the constant firing of adrenaline turns the volume of the voices up and increases the nastiness of the content.

This ups the fear for me that something the voices are saying will leak out into the room, or that I will raise my voice when talking to you. Literally just to hear myself think. This constant noise can also manifest in pressured speech, where I repeat ideas over and over again and overwhelm others. When these things happen, they are often noted as overreactions by more regulated minds.

I put so much effort into doing all of this masking, all this work to appear normal while simultaneously paying attention to what’s going on. I often exhaust myself. I don’t talk about this a lot because the last thing I want is your pity. If I do tell you, I want your understanding. But it’s a big ask, wanting someone to understand something they’ve likely never experienced.

So usually, if I reveal at all, I am given a kind of understanding that’s a near cousin to pity. You know, that must be really difficult for you. Followed by a few days of over accommodation. You know, well-intentioned Hey, how are you doing? You okay? Do you need a break? And then the invisible disability disappears again, cloaked in the magic self-care cape.

Truth be told, most of the time myself and other artists with disabilities are caught out pretending we don’t have those disabilities. Keeping our expectations of ourselves and what we are capable of extraordinarily high and impossible to meet 100% of the time. The truth is clear. Sometimes because of my disabilities, I don’t play well with others. And maybe I really didn’t feel it before because I’m healing now. But that drive of me and everyone around me to make a good show in the time we have is not something I enjoy anymore. In the past, I would have described that feeling of hyper arousal and hypervigilance as the feeling of being alive. I don’t know what I’m going to feel without it. Hopefully not the feeling of being dead.

I guess I won’t know for sure until my ashes are as scattered as Geoff’s. One thing seems certain the theatre making machine isn’t going to change anytime soon. So I will change directions. This is seen as sanism, mine and yours. How do we talk about that? A light rain starts to fall in the backyard in Victoria, where I sit and I close up my notebook, grateful that the sky can cry when I can’t. I know because of Geoff’s mentorship that I will go home and try to make some sense of all of this. Not to be agreed with, but maybe to keep some thinking out there that will help someone else feel less crazy, or maybe to give someone else a thought they’ve never had before.

At some point, I hope I can integrate all this lived experience and continue to help develop artists with disabilities and really understand what that means. I also hope I can continue to accommodate myself inside my own creativity. Right now, however, I feel a decades-old fatigue settling over me because we will never know how my friend with an intellectual disability truly envisioned their work because we took it from him.

And I may not be able to realize a place I believed in, because I can’t figure out how to include myself and some of my behaviours that are socially unacceptable to others. All is not lost. Mine has been a life of adaptation. It’s what artists with disabilities do best. My writing practice has become something I have learned to run through a different, calmer route of mind.

I guess I can answer to my own rhythms easier. I guess the focus required keeps the voices partying in another room. Noisy neighbours I would prefer not to have, but they don’t make my life unlivable. One on one collaborations and slower, longer development periods with people I know also seem to help. I will try to keep talking and listening with others when I have some insulation back on the wires again.

I will even go so far as to continue visiting with scattered elders like Geoff McMurchy, who went before me and too effing soon, if you ask me. Geoff McMurchy, whose obituary says he was relentless in his disability, arts and justice work, accomplishing a lot. It’s true. Google him. But he wasn’t an idealist. He seemed satisfied with the little wins that saying uncomfortable things brought and not giving too much of a shit about the big changes that might never come.

Maybe it was the joints he smoked at night. Maybe it was this backyard garden that he planned and had planted with the help of friends. Maybe it was that he always had his own art practice going, making sculptures and installations from found objects. Whatever it was, his ability to hold dissatisfaction in his heart without giving up, and his apparent acceptance of right now, it’s like this and I care, but not too much is something I wish I had.

When I went back last week to the garden beds, now fully in bloom like a private little pride parade, tulips in every color and shape, bopping along in the wind, a particularly bright orange parrot tulip spoke to me. This was right after I offered this bold, ruffle headed wonder of a tulip a chance to suck back on a joint.

The tulip, speaking in Geoff’s gravelly, Alberta influenced drawl, coughed and said, God, I miss pot. God, I miss Geoff. He really was the most driven stoner I’ve ever known and the most cynically caring, active artist I’ve yet to meet. I’m still not sure if getting all these thoughts down and out is a good idea or not, but for now, I choose to place my trust in a stoned flower, all I have left of a wise and often irritable old friend. May the conversations continue. May the work continue. In gratitude to Paula Jardine, who lets me come and sit in her backyard, she was Geoff’s up door neighbour, and talk and get the flowers high whenever I want. Thank you.

So.

Whenever I make art and perform it that way. I have a little booklet that I carry in my, usually in the sleeve of this notebook. And I update this book all the time. So. But this is the one I made in May in Calgary. So you just look up how to make a little eight page booklet.

That I just wrote on the front of this one Nervous System Slow Crisis Art response, which is an acronym for SCAR, which is a way of reminding myself that I run my work through a body that’s experienced trauma. And the reason I have this book is when you’re having a trauma response or you’re triggered or, you know, when you tell a story like I’ve just told, the body doesn’t actually know the difference that, you know, it’s not happening right now.

You run the risk that you’re feeling, you may have noticed this when something happens to you and you’re retelling a friend and you start to get upset all over again because our little nervous systems can’t really tell. So I keep this book because sometimes I get in that place of like, oh, I don’t I don’t know what to do, I, I’m overwhelmed and I’m buzzy, I can’t breathe. So I’ve gotten the habit of literally having these little reminders on my person. So that’s an example of something we do in disability arts and encourage each other to do. And the reason we do that is because we have to stay connected to the very real fact that we are working with vulnerability and emotion in our work. And this is any artist.

So what I want to propose now is that I’m going to put that slide back up. Actually, I’m going to go to my friend Riki and maybe Riki, you can talk about how Just Culture, how you brought this idea to Just Culture. So this was a practice that I had forgotten about. And then Riki brought it in as this idea of that these sort of self-care ideas can be anywhere from these things that I have for me, which is reminding me to breathe with these big emotions, when I’m overwhelmed, I go to helplessness quite easily, and I have to try and get back to compassion. I write out some skills that I have and some what works for getting me grounded again. Including lightening up. So I have a little cartoon I draw, I drew in there to remind me to not take things too seriously.

And then I have some things that I try to remember about you know, what’s happening. So it’s like what is happening, not what you want to get or get rid of, but what is happening right now. Another thing I have on the back is wisdom is the gradual lowering of expectations. And anytime you want to get something, you are not a friend.

So these will bring me back very quickly. So I was super grateful when Riki brought this discussion in to the Just Culture circle. And, if I remember correctly, Riki, you were you were in a low cal. Like. I just remember two of our members were actually in, Well, I’ll let you tell that story and how that came about.

Thanks, Riki. You know, and maybe introduce yourself and your practices. Riki.

Riki Entz: Yeah. Thank you. Hi. I’m Riki. Well, I’ll say, a little bit to tie in with what JD was talking about. I wrote some notes, and this is going to ramble, but it’s going to connect. Invisible disabilities. My visible disability masks my invisible disabilities.

And I think invisible disabilities, someone sent me, a lovely quote, I forget all of it, but just the idea that invisible disability is a misnomer. Who is it invisible to?

I think the idea of, like, I can often clock someone with similar invisible disabilities, but other people can’t because they choose not to. And some of my invisible disabilities became, or invisible disabilities became visible to me only a month ago, but when I look back at my life, they were there the whole time. JD is an incredible friend and an incredible author and has shared some of their story with me, and so when I started hearing voices, I started hearing them from the inside. And I was a little freaked out, and so what do you do? But you text your friends, you share that they hear voices. And JD reached out and I, we had this lovely talk and I don’t remember exactly what you said, but it was something really profound along the lines of like, what if I told you like you’re healing or your treatment was up to you? And that changed my whole worldview. And I think it’s also, it led me to peer support, which I want to get to. And I’m making notes as I talk because I forget because what it turns out, is it turns out I am not a one person, but multiple persons in one body. I identify as a plural individual or someone with dissociative identity disorder, which is a vulnerable thing to share, but an important thing to share. And I’m trusting everyone to take that with, with the vulnerability that I’m sharing it with.

And because it’s easier for me to use we pronouns and it’s confusing when I do that and don’t explain. We really liked what JD said about the fear of the voices coming out, the fear from years of the intrusive thoughts that will break free. We also have OCD, and the intrusive thoughts got really bad when, for those of you who might not be aware, there was an anti-trans march September last year, and things got really bad and we can look back and know that like a different version of ourselves came to light and couldn’t cope, and it was someone that held a lot of trauma and couldn’t cope. And we were very scared and we ended up in the psych ward. But oh, I’m jumping ahead. Before that, we’ve dealt with a lot of different things in our lives, and we chose to cope in different ways. And one of the ways we chose to cope, at one point of our lives was through drugs and alcohol and, you know, drugs and alcohol are complicated because they’re there because there’s a need. And so when you get to a point when you’re ready to move to something else, that need is still there and it’s unfulfilled. And we were really struggling, and one of our friends was worried about us and said, why don’t you make a coping menu, a menu of things you can do, because I was going on a trip back to where my parents live, and I was scared shitless. And my friends said, why don’t you make a coping menu? So this is our coping menu, we still have it two years later. So it’s coping strategies, things to do instead of turning to drugs or other destructive things. And there’s a knitting loom, calligraphy, a sucker, doodle, our peer support worker gave us suckers because we were going to take up smoking, and she said that smoking was not a good habit. So she gave us a bunch of suckers. Or reach out. And so this was the original thing because we thought, why not make a zine?

And then in September, we ended up in the psych ward and we were scared. We had never been in a psych ward and we were formed, which means we were there involuntary, and we took a piece of paper and folded it and made a self-help zine. And then when we got home, we made it pretty, or we did it before the psych ward or we updated in the psych ward. Time is, just who knows what time is.

But it was also our addictions counselor was like you have to make a coping booklet and we’re like, okay, but we’re only going to do it if we make it pretty. So we’ve put washi tape on it and we put stickers on it, and we made it really pretty. And throughout last year we ended up in a psych ward a lot. We ended up in the hospital a lot. We ended up going to the hospital via police cars. Learned that there’s a mental rights, mental health rights thing that they tell you when they apprehend you. I didn’t know that. And all kinds of things. And got a lot of lived experience and throughout it all, one thing we were constantly complimented on was our safety plan. And we realized this could help a lot of people because we found ourselves continuously failed by the system. It was always that we were too unwell or too well, or we masked too much, or we didn’t mask enough or whatever it was, but we went to our boss, who luckily is a very supportive individual and showed him what we had and he’s like, this would be a great thing to do at Just Culture, because he realized that what we needed help with at Just Culture was just being ourselves and reaching out and helping each other, and in the Just Culture group was one of my very good friends who had been helping to support me and JD checks in on me and my boss supports me, and we noticed the power of community care, and we talked about the importance of community care instead of systems care.

Systems care has a lot of cracks. And when your community is able to look after you, it looks a little different, and I also found self-care played a role into that. When I looked after myself, I was able to look after my community and I have a hard time doing things for myself because I don’t have all that self-love. I don’t always have that like, you’re worth it. But if I tell myself, Riki, you can’t help anyone until you take care of yourself, then I trick myself into doing good things. And so that started it. And the biggest problem I face is burnout, where I try to do so many things for other people that I become overwhelmed, and then I’m back in the hospital. So the biggest, for me has been trying to find a balance. So writing things down, like JD, I have my skills here and I have my, yeah, I have my skills and what helps me and I can go through this after our break.

JD Derbyshire: I love that chat function. Thank you. Riki. I think what we’re going to do now is take a break. And on this break, I’m going to encourage that, this idea of, I believe not just artists. I believe we’re all super sensitive, but artists maybe churn that up. I think the price of being human is super sensitivity, and if we think of that like a superpower instead of something that should be pathologized or that’s wrong with us, and to just check in with yourself in this break. How do you feel? Maybe try to write down a feeling word. What do you need? Is there something you can do to lighten up? Is there a Yo-Yo? Is there a ball? Do you need a piece of toast? Just to be present with How do I actually feel after hearing that story? After hearing Riki? What’s going on? What’s going on in the old nervous system of mine. And while you’re doing that, just stay present with that and come back to the space in 15 minutes.

I will tell you that we’re going to talk. We’re going to go into breakout rooms and what we want to try and do is you can hear both Riki and I taking responsibility for our, whatever it was that we ended up with and that sometimes, that responsibility, self responsibility can only go so far. And then we hit the system.

So I want you to sort of, come back in the space and we’re going to have some conversations about how do we move from this idea of putting all the onus on individuals and move out into community care. So how can we, you’ve just an experienced, sharing, hearing people offer vulnerability to you and say that we both work inside systems of art making that can’t always answer our need, but how do we get this sense of can you, regardless of your diversity, neurodiversity, whatever you’re working with, your disabilities, your what makes you you, come into a breakout room and talk about ways that you take care of yourself, nurture yourself and things you might, if you felt really courageous, could ask of the workplace you’re in, of the creative spaces you’re in that would make these super sensitivities a good thing, a beautiful thing.

So relax. That’ll all come back. I just wanted you to know that you’ll come into a smaller group thing when you come back. We’ll say 15 minutes. One measure of self-care that is repeated to me time and time again is how long do you wait to pee when you know you have to pee? So don’t forget to pee and have a glass of water and we’ll see you back here at 12:15 my time. So that’s 1:15 for you folks. Thanks, everybody.

Toyin Oladele: Thanks, everyone. See you at 1:15 Calgary time.

JD Derbyshire: Okay. Thanks, everybody. I hope you had a great break. We’re going to go into breakout rooms in about, 5 to 7 minutes-ish to think about this whole idea of self-care. And what is your relationship to self-care, what are the things that you do, and how we think about that as, mutual aid. So taking care of ourselves helps others, but also this idea that we want that idea of mutual aid to start affecting some of the systems. So in the essay that I read, that was two examples of things that aren’t shifting, that are shifting a little bit, but not shifting entirely, but we have some things, I can speak to theatre in this and, but other our arts practices are doing this as well. We have some idea of this mutual aid moving into those spaces. So, for example, when Riki was cast in a play with Inside Out, they double cast that play. Now, sometimes you’re seeing that with companies after COVID to always have, either double cast or understudies because of the, because of COVID, but for all artists with disabilities, that would be an amazing practice to bring into theatre full time, full stop.

Because Riki had an experience where they needed to be swapped out, but they didn’t miss the whole opportunity of being part of the play and performing in the performances they performed in. And then Riki had another experience that I’m going to get them to talk to a little bit, where we did see some impact on the system, bringing in artists with disabilities to a mainstage space where, I believe it was the director who was in that space, who was instrumental in including persons with disabilities.

And that was, and that’s an experience Riki had. So I’m just going to ask you to talk about it for a few minutes, Riki, then we’ll focus the questions again and go into the breakout rooms. So I’ll message you in chat, Riki, when it’s time to finish this part. Okie dokie. Okay.

Riki Entz: Riki speaking. Yeah. So we were in a show called Teenage Dick at Alberta Theatre Project, and they explicitly wanted actors with disabilities. There was two actors with disabilities, myself and Dylan Thomas-Bouchier, who played the lead. And the thing that was done really well was the room agreement and the room agreement, oh, yes, and the director was, Jenna Rodgers.

And Jenna Rodgers was the founder of Chromatic Theatre, which is the, BIPOC theatre company here in Calgary and does a lot of great work in Calgary. And we’ve always had a good work rapport with Jenna. And the room agreement was really great. The room agreement is like, we all sat in the beginning and before we started working, talked about what we needed and what we needed from each other, and one thing we talked about was asking for what you need, and that it was always okay to ask for what you need. So there was one particular moment I really remember when I was getting a migraine, and when I get a migraine, I need to take a medication immediately. There is no time for it. And we were on deck, we were, like in tech. And when you’re in tech, you don’t screw around. And I was like, I need to leave and come back in five minutes. And Jenna was like, surprised, but was like, okay, Jenna trusted that I knew what I needed, and I was like, later I said, thank you, Jenna. Like, I had a minute where, like, I knew that if I did this right away, I would be fine, but if I didn’t, I would be out for the next four hours.

And Jenna trusted that I knew what I needed and there was a moment where I actually had a meltdown, and Jenna came and talked to me, and we talked about disability justice, and we worked it out. And Jenna trusted, just it was a lot of the trust in me that I knew what I needed and that I was okay with it.

And the other big part of it was that a number of people involved in the production took time to reach out to me ahead of time and ask me what I needed. Do you need this? Do you need that? Do you want a wheelchair for the show? Do you, what do you need? And I had an accessible dressing room that I had consulted on previously, so the biggest thing wasn’t what accessibility do we have built in, it was the accessible attitude and the fact that people trusted me. I think that’s the biggest thing. Letting me ask for what I need and trusting me when I asked for it. End of thought.

JD Derbyshire: Thanks, Riki. I keep forgetting to do that today, but, yeah, I love this accessibility attitude and one size fits one. So we’re going to go into breakout rooms. I hope you can risk a little bit of your own vulnerability in talking about this idea of, if the arts encompass, you know, sensitive people, and sensitive isn’t a bad thing, how do we have this accessibility attitude? And I want the word sensitive to be thought of as this accessible idea. So where are our barriers, psychologically or in participation and also in the built environment. And how do we so for us in the disability arts community, I’ll tell you this very honestly, there’s like grassroots organizations, most of our work is done in the dirt, which is under grassroots, which is like informal, unfunded, friendship, mutual aid, community care, that’s it. So the trouble with that is not that we don’t support each other and get out there, it’s how does that come up into the systems. Because what benefits us would benefit everybody. So how these are things like you can ask how do we hold in our workplaces or our performance spaces or whatever it is, the emotional life of people who are there, those who want to express it, those who don’t want to express it.

When does it feel like you want someone to take self-care? How do we continue conversations about what we can be responsible for and how do we impact these systems. So I would just love if you get together and, talk about whatever. I think the goal to come back into the room is, you know, what is your relationship to these ideas of ableism, and sanism in the arts and with yourself? What do those ideas mean to you? Just see where it goes. We’re going to just take about 15 minutes. And then we’ll come back and retrieve. So I would like to make someone in the group responsible for the person who kind of reports back. No right answers, no wrong answers. Everybody gets a gold star already. The whole idea that we’re trying to present is that these conversations are ongoing all the time. That’s the best thing about having mutual aid communities. Any questions about any of that?

You’re going to be in kind of smaller groups. So, have fun and we’ll see you in about 15 minutes. We’ll give a warning to the rooms when you have a few minutes left. Thanks, everybody.

Toyin Oladele: Toyin speaking, I’ll make the rooms open now. Thank you.

JD Derbyshire: It’s getting better and better.

I’ll talk to you soon. Thanks, everybody.

I like this part, where everybody pops back in.

I see so many more faces this time. This is so great. Not that you have to be on camera. No shame.

Hello, everyone. Popping back. I really do like this part.

How was that? How’s everybody? Yeah?

Okay. I don’t know who was in groups, so I’m going to just ask us to volunteer.

Sharon Stevens: I could go

JD Derbyshire: Somebody, I see a Sharon Stevens. Thank you. Sharon.

Sharon Stevens: Okay. So our little group, we talked about trying to have a balance, of work and life, I guess, and, really trying to pay attention to body, like you said, JD, for one thing, but also tactile things that make us feel good, like moss and getting in nature.

We also talked about, creating an alter or a collage or something to help focus. Also planning life around, managing pain and managing life in general in, in a bit of more of a balanced way with sleep and food. And then just some practical, things like, working in three hour chunks of time and just, that might be it for your day, or 2 or 3 hours making it a six hour day. Scheduling send on emails, instead of, I mean, something might pop up in the middle of the night, and you get up and write an email, schedule it to go during work hours. So we’re setting a good example for only working during certain hours. But get it off your mind in the middle of the night. Adding volunteer time to invoices. So, maybe I’m here at this event and this as a professional development, but it’s still under contract person that that I’m contributing my own time for this kind of professional development.

And then with contracts, trying to find ways to add the spirit of the event or ways that include mental health, wellness and well-being into contracts themselves, not just the when you’re going to work, what hours, how much you’re going to get paid, what time frame, all that stuff, but adding those kind of words to contracts. And I’m happy to like, learn more. If other people are doing that, I’d be interested in that. So we would be our group. Okay, I’m going to stop there.

JD Derbyshire: Thank you. Sharon, we will talk about something that’s trying to organize all these things together at the end. So thank you for that.

But that’s a really good example of this idea of self-regulating moving into system regulating. So where can we bring those ideas of regulation that aren’t necessarily legal, but are, you know, body, mental health, brain-based practices. So I love I love that a lot. And we’ll speak a little bit to the end. Thank you. Sharon. Anybody like to go next. I saw a Colleen hand.

Colleen: I was in a group with Vicki and we said that one of our main self-care is spending time with family and partner and pets. And I know for me, my pet is such a good companion, and taking care of him is, like, taking care of myself. And other things were eating well and going for walks and doing nightly journaling of mood journal, med journal, sleep journal, and I also paint a watercolor every night before I go to bed and do gratitude journal and those things seem to help me. And yeah. So pass it on to the next one.

JD Derbyshire: Thanks, Colleen, we are getting crunched for time, but I did want to just introduce, the idea that both, Riki and Colleen and also and myself and, maybe 5 or 6 others of us are part of the Just Culture, Disability Justice Circle.

And Colleen is working artist and part of that group. And we’re meeting slowly working on all kinds of things, but I just don’t have time to, get Colleen to tell you more about her wonderful practices, but did want to introduce you, Colleen. Thank you.

Who’s next? That was great, thank you. I see a Mary.

Toyin Oladele: Toyin speaking, Alan has his hand up, and it’s been up for a while, just so you know.

JD Derbyshire: I missed Alan, sorry, Alan. I owe you an ice cream. I see Alan and then Mary.

Alan Rosales: Alan speaking. For self-care I do love ice cream, for sure, that’s at the top of my list. I was in a group with Rosanna and Nick. A little bit different that wasn’t mentioned from the other groups is immersing ourselves in art practice, and then even expanding into new things in our practice to try different things like photography, if you’re a visual artist moving into photography, and then just that daily practice of always giving to yourself, like sleep and acupuncture. And then know another member of our group also talked about the importance of managers and supervisors and that authentic and genuine relationship with their staff, about having those conversations around self-care, and also, how does leadership and management model those same things to staff to create that dynamic work culture? My final thought, thank you.

JD Derbyshire: Thanks Alan, so, and again, a great rolling of the self-care into the, into the system. There’s self-regulation into system regulation. And I really love that to hear that word authentic, because, you know, when we work with people with identifiable difference, we have to pay very, very close attention to those needs, but of course, everyone has difference. So how are we able, as Riki reminded us, to speak to our own needs and how as managers or supervisors or directors, or people in charge of other people, do we recognize that what we might need for self-care might be entirely different than someone else? And how do we have the courage to make room for all these all these things?

So thanks. Thanks, Alan. And I do owe you an ice cream and I will be in September in Calgary. So, Marcus, here we come.

Mary. Hi.

Mary: Thank you. Okay, so I was with Abigail, and we both like going for walks and then in the times when it’s just too cold, we like to do yoga. So I’ve personally found a free yoga online yoga with Cassandra, and just that little 15 minutes at the end of the day really does a lot for me. I cannot sleep without that, to be honest. And then journaling, so the little GLAD acronym, so Grateful, Learned, Accomplished, Delight. And I in the mornings I try to take a minute to read an intention, and sometimes it’s just I will remain positive and keep moving forward. Or just to remember that I am enough. Abigail quite likes nurturing her inner child, which I love that, so she’s trying easy versions of other activities, just like colouring or, just like the little jewel things, and you can get them at the dollar store and so forth. So that’s lovely, blocking time to dedicate to what must be done and remembering not to overfill your backpack. So basically, you have your backpack and everyone’s taking things out of theirs and trying to put it into yours, but there does come a point where you just can’t anymore. So you must say no. And, to end, the quote of an old white guy, because that seems to be what we’re doing, and I love Kurt Vonnegut, so thank you for that. Perfection is the enemy of progress. Winston Churchill.

JD Derbyshire: Thank you. Thank you so much. It’s really interesting how where some of the groups are surfacing art practices themselves as really great ways to self-regulate, and also that outside of capitalism, which is something we talked about in our group that art, reminding ourselves that art is a gift, you know, an offering that if we spend the time and make and make our craft as well as we can, it’s an offering. It’s a gift to others. So it’s something, we’ll talk about that at the end. That’ll make sense of that. But thank you very much. Mary. Do we have anybody else who’s ready to go? I see Sayo.

Sayonara: Okay. I was in a group with Mark and Riki, and we were take we were chatting about the idea that self-care enables community care, that we really love this idea of thinking when we self-care, we are also able to support others. We were also talking about the relationship with sanism and ableism in the system and with yourself, and it was pretty interesting to hear that, you know, sometimes we self-doubt and internal sadness is also, a thing, we’re not understanding our self also we’re not helping to understanding others.

And when it comes to system, I guess, the group was talking how much leadership can be key in system change. So I don’t know if, if Mark and Riki just would like to add on that, but this is a little bit of what we discussed. And that’s my final thought.

Mark: You did great, Sayo.

JD Derbyshire: Did I hear Riki in there as well? Yeah. Okay. Riki. Yeah. Okay. Thank you. Anybody next? Thank you so much for that Sayo. I see Mackenzie.

Mackenzie: Yes. Hello. I was in a breakout room with Patti. One of the things that we were talking about, was, during the time of COVID, it seemed like society was sort of a, on, like an elastic band Was the metaphor used where people were understand more that, like, the system wasn’t working, things were stretching and getting a little bit more tense, And then seemingly, when lockdown with lockdown here in Alberta, was seemingly lifted, everything just like snapped back into place and suddenly the drive to enact change was seemingly not there present as much anymore. And so one of the things that I think both of us were trying to ascertain, and I think that we came away with was that in this moment and just like we were saying before, if we want to do well by others, we have to do well by ourselves, in this moment, self-care and understanding the questions that we need to ask about what we need in a space to support ourselves, our work, and thusly, the work of ourselves of everyone else around in the room. That can be really important. And it’s, especially for someone like me that often puts my own needs aside in favour of others, the self-sacrificing isn’t actually doing any good in this moment it’s just creating more work for other people. Yeah, I think that was a pretty swell, succinct little ditty.

There we go, out over.

JD Derbyshire: Thank you. Yeah, it really is. Something that disability arts and justice is lending to the larger world that you did see in COVID, we were all, suddenly disabled by conditions. So the medical model makes disability a personal thing, whereas the social model is it’s the conditions that caused the disability, and we were all we all experienced that.

And it is really interesting that that has been, now I can fit into the mainstream system. I have no problems. Let’s just carry on. So some lost learning there, but conversations like this give us all hope that, that we are heading in, that we are still talking about it at least, because sanism and ableism are not at the same table, same tables as other kinds of equity. Not yet. They’re the ones that are very easily forgotten and left. So I greatly appreciate the opportunity for all of us to participate. Anybody else? I saw Greg put some things in chat. Is there anyone else?

Riki Entz: Oh. Riki speaking. I just had my last quick thought, which was that my biggest frustration with things, it was related to a question, but I forget now how, Oh, my relationship to sanism and ableism in the system was that, ableism is pushing, or sanism is getting pushed out by disability arts. That meant, deaf disability and Mad Arts has solely shifted away to, deaf and disability arts, and I think that’s very interesting, and I can go on about that, but that’s a whole other conversation. So that’s just a food for thought that like, I really think like ableism is getting to the table and sanism isn’t.

JD Derbyshire: Thank you for that, Riki. All right. I’m going to wind us up on time, which is something artists with disabilities are not very good at but I’m going to attempt. So I continue to thank you all for showing up today. It is part of disability justice to believe that we have to just keep having conversations about uncomfortable things. Thank you all for allowing us, Riki and I made agreements with each other that we would risk some vulnerability and super sensitivity in public today, and we know how to take care of ourselves afterwards. We’ll check in, so no worries there.

Continue to really think about this: Why is self-regulation such an important, or self-care, such an important part of regulating and caring for the system, the systems that we work in and that just to let you know of a few initiatives that are happening, if you want to get, we will take all the learnings from these and, and share them with you, and also that if you’re more interested in knowing about, People of Design is, together with, the Just Culture circle is working on something called the First Art Kit, which is sort of like a card kit of self-care centred in art practices that lead to questions of, or ways of, using art to regulate nervous systems, but also includes questions about moving it into the system, and something that is very nascent but has about, I don’t know, 85 members right now across Canada is something called AWUSH, which is Art Workers Union for Sanity and Health, just trying to take away the conversations of mental health from places of crisis and centre it back in what Kurt Vonnegut’s calling about is that we are super sensitive people, so we have to take care of artists in different ways so they can keep making. Thank you all. I know most of you here are actively involved in these questions.

Thank you for all that you do, known and unknown. The recording will be available if you need it. Please tell other people that it’s available. I think we have all your emails, if for any reason you don’t want to hear about those things, just let us know and we won’t send the group email to you.

I want to thank Riki, very, very much for just being my, my mutual aid friend. I love you. I love all of yous. Thank you, Colleen Peters, for getting here when you could. It’s so great to see you and being part of the Just Culture circle. Thank you CADA for funding that initiative. Thank you, Toyin, for, helping me, helping whatever we’re doing here at these town halls, Helen, Patti, all the people I see here from CADA, who is an organization that gives a shit.

Always appreciated. And I think that’s it. Riki, I’ll give you, notes. 1:00. Sorry, I’m taking the last word. Thank you, everyone, for joining us. Take good care out there.