On May 27th, the Peterborough Public Library hosted disability activist and Trent instructor Derek Newman-Stille’s discussion about Disability Art (Dis Art) with panel members Adelle Purdham, Rob Viscardis and Luka Stojanovic.

Held in The Friends of Library community room in honour of National AccessAbility Week, the two hour event covered the panel’s collective experiences of disability, and how it influences their art and lives.

“I just want to thank all of you for coming to this event, to hear about disability art,” Newman-Stille said.

“So often in our community, disabled folks are looked at as audiences. Not as artists, not as creators.”

“One of the things that I just wanted to remind folks of is the problematic matter with disability art [...] Artists in the disabled community, if they use ODSP [the Ontario Disability Support Program], cannot actually get access to those funds,” they explained.

“If they sell anything, ODSP claws it back, which then leaves them at a deficit, because we still have to pay for materials, travel, event fees, and things like that.”

Newman-Stille went on to introduce the night’s panelists.

“We’ve gathered this panel together, with people with different experiences of disability in their lives and different degrees of knowledge about different aspects of the arts. We’ve got people from the literary realm.”
“I wear a lot of these hats, to be honest,” they laughed. “We've got people from film [Viscardis], and we’ve got folks doing visual art [Stojanovic].”  

“We wanted to kind of encompass this idea of Dis Arts is something very big. That there are a lot of different possibilities,” they explained. 

The audience was then presented with Viscardis’ film, Power of the Walk. The documentary follows Lily Rosenberg, a fifteen-year old model with Down syndrome. It shows her struggling to be taken seriously in the modeling field and how she would be put with children when she performed. 

After the screening, Viscardis gave a brief speech about the role that disability played in his familial life leading up to the creation of Power of the Walk.

“I started that project with my mom, actually. It sort of came out of an idea from her, out of desperation really, for supporting and caring for my sister, who’s three years older than me, for her whole life,” he said. 

“My sister has an intellectual disability. She has done really well for herself, she has a happy life, but she struggles to find support for her to do the things she wants to do,” Viscardis continued.

He explained that his mother is getting older, and is concerned about what will happen when she can no longer care for her daughter.

“She kind of really wanted to help try to find more people to become support workers or to just help somebody out in their life. Whether they have a disability or not. Just sort of embrace this mentality that everybody’s different, some people need more help than others.”

“At the end of the day, it’s really an ordinary story. [Lily] is just another model, there are hundreds of models in the fashion show [in the film], and she’s just another one of them, she does an amazing job. Unfortunately, because of the context of the society we live in, the film becomes what it is. [It] becomes a story that we need to hear.”

Purdham’s book I Don’t Do Disability is a collection of meditative essays about her relationship to disability before and after the birth of her daughter with Down syndrome. 

Following Viscardis’ presentation, she read a passage about a disabled boy she went to high school with named Toby who would pass her notes telling her he loved her. In the book, she wonders if the kindness she showed him was genuine warmth or dismissive and superficial. 

In the following discussion of her book, Newman-Stille praised Purdham for being so candid about her relationship to ableism.

“To admit she had ableist beliefs—and all of us do have ableist beliefs, including those of us that are disabled. I think it’s powerful to acknowledge that,” Newman-Stille said. 

“I hope folk sit in that discomfort a little bit, and think about what it feels like to acknowledge ‘I am ableist. I have opinions on disabilities that don’t reflect the disabled community,’” they said. 

Last to present was Luka Stojanovic, who read two poems. On top of his work for various community groups, including ReFrame Film Festival, he is a PHD student at Trent who works on questions surrounding chronic illnesses, and specifically “medically contested” illnesses, like fibromyalgia and chronic-fatigue syndrome. 

“I’m interested in research that really foregrounds lived experiences with those conditions and tries to use the arts as a way of engaging various kinds of stories and challenging these assumptions that we have around people living with non-visible disabilities,” he explained.

While Stojanovic admitted their primary artistic format is visual arts, he had recently been trying his hand at poetry. He performed his first ever live-poetry reading, both of them being about his experience with chronic illnesses. 

Then, Newman-Stille began their own presentation talking about their Dis Art on display in the library entrance, and down its stairs. The pieces, created by Newman-Stille, are meant to portray both historical and their own personal experiences with disability.

Newman-Stille commonly uses mixed media for their art, including a variety of household items like pill bottles and newsclippings alongside fabrics and paint. 

The first work they presented was Part of Our History: Pookie the Monkey Girl, a work based on the real historical figure of “Pookie the Monkey Girl.” As a five year-old girl, she would perform in nothing but a diaper at the Toronto Freakshow in the 70s, hosted on what became the Toronto National Exhibition, until she was eventually removed by Child Services.

The next item of discussion, a multimedia collage titled Labelled, is about the medicalization of disabled people and their bodies, Newman-Stille explained. It uses written text superposed onto pill bottles to illustrate the effects of that medicalization on disabled people’s self-perception.

In a following panel discussion, Newman-Stille told a story about breaking their finger, leading to them needing blood work. 

As part of their blood testing, they were secretly given an HIV test by the hospital’s staff, who had disovered that they had a male partner. They only found out about the HIV test weeks later, when they were speaking with their family doctor, who asked why they had asked for an HIV test, and if they were cheating. On top of that, when they had first arrived at the hospital, the staff hadn’t believed they’d broken their finger because their pain tolerance was so high after years of chronic illness, and assumed they were drug-seeking.

After the event, Arthur had the chance to speak with Newman-Stille and the rest of the panel, and ask them a few questions.

Ian Vansegbrook: Do you guys have any thoughts on National AccessAbility Week? Not sure if you know, but nationally it is not accessibility, but AccessAbility.

Adelle Purdham: We have special days, weeks to celebrate Down syndrome. I think at a certain point, when we’re raising awareness, that’s great. But then, those in that community sort of say, ‘can we get beyond this? We’re all aware.’ Accessibility shouldn’t be something that we focus on for a week, it should be a part of our existence, just built into the fabric of our society. 

Maybe for some folks it may be necessary to have these kinds of weeks and in a way, it’s good to highlight accessibility issues in that way. It should be something that’s just part of our everyday experience. We should be moving past this.

Derek Newman-Stille: I think there is something really intrinsically problematic about the focus on ‘Ability’ with a capital A. 

First of all, it shifts the focus from inclusion as a whole, accessibility as a whole, to this idea that disabled people need to be doing the work. This needs to not be about our abilities, it needs to be about our disabilities. 

It needs to be about the systemic violence that we experience as disabled people. So I think changing the spelling and using the capital “A”, ends up shifiting the focus away from us, and still puts that hurdle in front of us. I think it’s related to the overcoming narrative. 

IV: What can Peterborough/Canada do for Dis Arts?

Luka Stojanovic: Quite simply, funding. Support more galleries, like Tangled Art + Disability, Making sure that granting agencies are foregrounding disabled art in their funding calls, and making sure that there are substantial funds directed in that direction.

IV: Have you guys seen a positive change in attitudes in your lifetime towards disability/Dis Arts?

DNS: It actually exists. [I laugh.] 

Sorry, I’m old. When I was a kid, we didn’t have anything like this, in terms of representation of Dis Arts. I think it’s really interesting—we often encounter Dis Arts by accident. Often it’s through community. It’s a matter of happenstance, and it’s a matter of privilege. 

There are some folks who are privileged to be able to encounter it, because it’s not in public spaces, because you have to hear about it from a friend who knows a friend who knows a friend who is an artist.

IV: Have you guys seen material gains for the disabled community in your lifetime?

DNS: There are a bit more ramps. [I laugh again]. 

So, minor improvements. I want to emphasize that we were originally supposed to be entirely accessible, every public building by 2025. That has not happened. They’ve had to recalculate, which they always do for disabled people. It’s always ‘we’ll do it later’. ‘We’ll make sure that you can come in when you’re older.’ 

We’re losing that opportunity for accessible public spaces now, when everything was supposed to be made accessible.There’s a little bit more accessibility in certain areas, but there’s alot less accessibility than there was supposed to be.

IV: We just had  a recent election here in Canada, did any of you see any of the major parties speak to disability in any major way?

Collectively: [To paraphrase silence and head shakes] No.

Lastly, Newman-Stille wanted to speak for a moment to the importance of the library, in the light of recent funding cuts.  

DNS: I want to acknowledge the work of the librarians, and my intense disappointment that the city hasn’t recognized that and that the city has fired multiple librarians. 

I think that the library is an amazing hub, it’s one of the few spaces where you can exist for free. You don’t have to buy a coffee, you don’t have to pay to get in. I really wanted my art there because I want it to be a space where folks can come as a community and encounter something new, and see disability in a very public space. 

Libraries are more than books. They’re spaces of connection.