“My friends call me the mother of all dragons,” explains Debbie Ratcliffe. Ratcliffe is artist in residence at BEING, a studio for artists labelled with intellectual disabilities, and co-host of BEING’s podcast, Speak. The first episode of Speak details Ratcliffe’s relationship with dragons and why they feature so prominently in her work, including how she found and brought colour to the dragon world. Ratcliffe has been with BEING for about 15 years. When she began, the studio was known as H’Art of Ottawa. She tells me that she loves the atmosphere at the studio and that her identity as an artist means a lot to her: “Before I went to H’Art, I didn’t know how good of an artist I was. I never thought about art at all until I went there. I started doing whimsy paintings, and I stuck to it.”
My first introduction to disability culture was through working as a live-in care attendant at a community for people labelled with intellectual disabilities. When I later began to identify as disabled and chronically ill, and eventually exhibited in a Disability Arts context, I was struck by the lack of artists labelled with intellectual disabilities in the Disability Arts movement. “It would be great to see greater representation of disabled artists in contemporary art, full stop,” says Elizabeth Sweeney, Program Officer at the Canada Council for the Arts. Yet artists labelled with intellectual disabilities have even fewer opportunities than other disabled artists. “We just don’t see the diversity of disability represented.” Sweeney’s colleague Alan Shain, Disability Arts Officer at the Canada Council, affirms the importance of the work of artists labelled with intellectual disabilities. “The Canada Council recognizes that artists labelled with intellectual disabilities are an important part of Deaf and Disability Arts and bring unique ways of working. These artists add to the diversity of artistic practice, widen who the arts can relate to and speak to, challenge conventional ideas about interdependence, beauty, power.” Yet we don’t often have the opportunity to encounter their work. These artists face barriers that many artists working within Disability Arts do not. While the Canada Council is working on addressing some of these barriers by adopting clear language, doing targeted outreach, and providing Application Assistance funds for artists to hire someone to help them with the grant-writing process, the Council sees very few applications from artists labelled with intellectual disabilities.
Liz Winkelaar and Bella Bowes.
Image description: A production photograph captures five dancers in blue striking poses with arms extended and enthusiastic smiles. Two dancers sit in wheelchairs, two stand, and one kneels. All the dancers wear costumes of blue with accents in multicoloured geometric shapes, and several have a rectangle of shimmering pale blue across their foreheads. The dancer standing in front wears a tiara, mouth wide open with excitement. The kneeling dancer has eyes cast downward, eyebrows lifted. One dancer in a wheelchair wears a beauty pageant-style sash reading “Super Crip” and tilts their head to the side. Another dancer in a wheelchair wears a bright red fascinator with a lush feather complementing a streak of red in their hair. The other standing dancer is at the back with a giant blue tulle crown on their head covering their mouth in a coy expression.
Above: Inside Out (virtual rehearsal still), 2020. Choreographer: Jessie Huggett. Dancers: Robert Chartier, Russell Winkelaar, Elizabeth Emond-Stevenson, Renata Soutter, Jessie Huggett, Moni Hoffman, and Shara Weaver.
A grid of seven windows from a Zoom screen recording, a rehearsal done in people’s own homes. Each window shows one person. In some, they look toward, or just beyond, their webcams either smiling or with a still expression. One person leans far against their chair, head tilted way back and one arm extended up and behind them. Another, whose background is a photo of a lush garden, strikes a pose with one hand shading their eyes and their other arm reaching behind them.
I think often about a conversation I had years ago with a friend of mine, an artist labelled with an intellectual disability, who I’ll call P. We were on our way home from an arts festival where she had helped me with a performance. She told me, “I wish I could be a real artist everyday.” P is one of the most committed and prolific artists I know. At the time she worked at a day program in a thrift store, and though the staff made space for her drawing practice, the program didn’t meet her needs as an artist. In recent years she began working alongside other artists and artisans labelled with intellectual disabilities in a different day program. “I love it so much,” she tells me. She feels like an artist now, but she does not have ownership or control over her work and often tells me that she doesn’t choose her subjects. All of the money from the sale of her and her colleagues’ work goes to the day program.
“If I only had one place to be an artist, I would fall in love with it too,” says Rachel Gray, Artistic Director of BEING. There is a long history of people with intellectual disabilities not being paid fairly, if at all, for their labour, and laws that support this practice. Like many organizations for artists with disabilities, BEING has its origins in a day program model, funded by provincial social service funding. Gray, who is disabled herself, describes coming to BEING and noticing all the ways that this community, which was so cherished by its members, needed to change to be more just and equitable. This had to be approached with care. “Having conversations with the community is so important. If you think something should change, talk about that. Open up space to discuss it. Have open conversations. People need to be heard. It’s emotional any time things change that are important to people. You have to come from a place of trust.”
Under H’Art of Ottawa, which was a charity with a mandate to provide literacy and “life skills” education, artists did not hold copyright of their work, artworks were not priced at market value, and the majority of the sales went back to the program. Executive Director Stephanie Nadeau explains that since BEING became an arts organization in 2017, “we became accountable to different values.” Nadeau, who is not disabled, sees her place in the organization as temporary. Her goal is to make room for someone with lived experience to take her place at the helm after seeing BEING through its transition. Ratcliffe tells me about what this change has been like: “we get more money since BEING started. We used to pool sales and divide it up. H’Art used to get most of it, and we would only get a little bit.” Artworks by BEING artists are now priced at market value and split 60/40 between the artists and the studio. More money not only offers artists the dignity of having their work properly valued but alters their material conditions. “Money gets me more art supplies. I save some of it—most of it. It helps me out a lot. Being on ODSP [the Ontario Disability Support Program] is not fun,” explains Ratcliffe.
Image description: An acrylic painting of a happy nature scene with a human figure, two dinosaurs, two butterflies, a turtle, flowers, and a river. The earth-toned butterflies hover at the top of the image left and right. Below, an arc of green grass flows from the bottom left of the page, up to the middle, and back down to the right, framing a dark blue pond. At the peak of the grass stands a turtle with whorls of green on its shell and a wide, curious smile. Tall flowers stand on either side of the turtle with striped leaves and vibrant, multi-colored petals: blue, red, and yellow around fiery orange centres. Within the grass, a human figure with an auburn ponytail stands, mouth open in delight. On either side of the human figure, stripey dinosaurs with multi-coloured plates atop their heads and long, waving tails. One stands in the water, and the other is on the grass, its body is reflected in the water.
Meeting material needs is a significant hurdle for many disabled artists. For myself, although art feels integral to my thriving, “survival first” has long been my motto. Elizabeth Sweeney feels similarly. “When we talk about the barriers artists face, survival is one of them. Survival is our first conversation, and we’re still having that conversation. So many people outside of the discourse don’t understand the precariousness that disabled people experience.” Both Sweeney and Shain note that meaningfully improving the conditions of Deaf and disabled artists hinges on broader social changes. And artists labelled with intellectual disabilities face very particular barriers—both within and outside of disability spaces.
The day program model that so many artists labelled with intellectual disabilities work under is in conflict with the core values of the Disability Arts movement. “An increasing number of arts organizations are in a period of transition, shifting their models towards a more emancipatory practice,” says Sweeney, noting that before its transition, BEING would not have been eligible for arts council funding. Deaf and Disability Arts funders only support arts organizations that are disability-led and follow a “by us, for us” ethic—a key tenet of the Disability Arts movement. Sean Lee, Director of Programming at Tangled Art + Disability, describes how the values of Disability Arts formed in reaction to the ways that the work of disabled, Mad, and d/Deaf artists has historically been framed as Outsider Art and/ or Art Therapy. Artists have been silenced, othered, and stripped of their agency as people who create and shape culture under these paternalistic paradigms. There remains a mistrust of and discomfort with practices of “speaking for” people with disabilities, which many caregivers and careworkers still use often—especially when supporting those who face communication barriers or who communicate in unique ways. Lee describes how, “sometimes there is discomfort interacting with a caregiver or care-worker, especially if the person speaks about the artist’s work in therapeutic or paternalistic ways.” Building relationships and trust in these circumstances takes extra time and care. This is especially difficult for non-profits like Tangled that are accountable to funders and want to support as many artists as possible in a given year. There is a desire to build capacity in mainstream galleries to curate disabled artists, in part to free Tangled up to work on these sticky issues and others. Lee points out that as it stands, “those who are given the most attention are those who can fit into the mold that institutions are most comfortable with.” Those of us whose bodyminds are the least disruptive to the status quo, or whose disabilities are least apparent, have the strange privilege of being more easily embraced by a mainstream society with ableist values that create ongoing harm.1
This conversation surfaces the reality of ableism and injustice within and between communities of people with disabilities. Disability itself is a broad category that includes individuals with a wide range of experiences, barriers, and needs, as well as intersecting privileges and oppressions. “It’s hard to quantify because there is so much nuance,” says Lee. While addressing intra-community issues hasn’t been intentionally avoided, it also hasn’t been at the top of the agenda for Disability Arts. “There has been so little opportunity to showcase Disability Arts that it’s been hard to delve into these nuanced conversations.” Artist Emily Cook, who is a board member of Tangled, reflects that though the challenge is daunting, it can only be good for all of us to expand the community of disabled artists, that “Now is the time to do the work.”
Image description: A vibrant oil painting. Three dragons have ovoid bodies and long, stripey necks spiked with plates, and stripey tails. They are pink with pink, red, and orange stripes; blue with blue and turquoise stripes; and mauve with mauve and pale purple stripes. Their bodies and faces show thick, uneven brushstrokes. The dragons each stand on two legs against a dark blue background, green and blue hash marks emanating out from their bodies. Each dragon dons a happy face with black dots for eyes and a simple mouth of a black line, turned up joyfully.
What does that work look like? Sweeney names both the magnitude and familiarity of this challenge: “So often in Deaf and Disability Arts we have to create the unimagined and bring into existence what does not already exist.” While I have not been able to find examples of Canadian arts organizations for people labelled with intellectual disabilities, led by people labelled with intellectual disabilities, there are artists labelled with intellectual disabilities creating ambitious work with networks of support that might point to ways that leadership can be reimagined.
Jessie Huggett is one such artist. Huggett is a professional dancer, teacher, and company member of Propeller Dance, an Ottawa-based integrated dance company for people with and without disabilities. Through Propeller’s Emerging Choreographers Program, Huggett has the opportunity to do professional choreographic work as well. With mentorship from Propeller’s Co-Directors, Artistic Associate, and the support of a dance partner specialist and writer, she has been working with six company dancers over Zoom to create a choreo-poem titled Insight Out. The program provides support in her creative process, space, production value, and professional artist fees for all involved. Huggett also works independently with a dance mentor, Elizabeth Emond-Stevenson, who she hired with an Ontario Arts Council Professional Development grant, and currently has administrative support from family. When I ask Huggett what it means for her to be choreographing her own work, she says, “it’s the answer to my prayers.” Other emerging dance artists who have Down syndrome have expressed how much it means to them to see her in this role. It has allowed them to consider possibilities for themselves that were previously unimaginable, which is everything. Shara Weaver, a Mad artist and co-founder of Propeller Dance, says, “we’re a catalyst, definitely a catalyst.” At Propeller, dancers collaborate and form relationships with members and guest artists that often lead to opportunities elsewhere. This has been true for Huggett, and these relationships are integral to her creation process itself. Rachel Gray, who is a childhood friend of Huggett’s and one of those helping her to realize Insight Out, sees this team approach as a potential model for rethinking leadership: “The easiest place to incorporate co-leadership is in the creation of artworks.” Might it be applied to other contexts?
Image description: A grid of nine windows from a Zoom screening recording showing people dancing solo in their homes. Some stand, and others sit in wheelchairs or other types of chairs. They all face their webcams either with eyes closed or with their gaze steady and focused on the distance. The choreography captured is an exploration with hands. While one person’s hands are not visible in this shot, the other eight dancers all hold intentional poses with their hands: clasped in front of the chest, fingers extended and palms open near the face, in opposition with one hand up and the other down, one hand tracing the length of the other arm, and a hand resting on the heart.
If to crip means “to open up with desire to the ways that disability disrupts,”2 then cripping the arts has to include opening up with desire to the ways that intellectual disability disrupts mainstream disability culture. What might interdependent leadership look like? Can we learn from examples of interdependent creation like Huggett’s, as Gray suggests? Sweeney sees an opportunity to re-think the status quo by looking towards how disabled artists already approach meeting their needs. We don’t have to replicate hierarchical structures of leadership in disability-led organizations. “We should look to our networks of care. Could interdependent leadership be a hybrid or tangled or messier version of the care collective?” Sweeney asks. Would such an approach offer not only support to artists labelled with intellectual disabilities, but accountability to both individual artists and their wider community?
Of course, it’s not the sole responsibility of artists with intellectual disabilities, and those people and organizations supporting them, to do the heavy lifting. Interdependence and autonomy are both core values of Disability Arts. Despite this, there is a discomfort with the kinds of interdependency and care relationships that some people labelled with intellectual disabilities need in their lives and artistic practice. There can absolutely be subtle (and not so subtle) abuses of power wherever there are power imbalances. But rejecting these ways of working because of the inherent complexities is not helpful. “We need to normalize collaboration and interdependent practice. Collaborative practice is real practice. Interdependent practice is real practice,” insists Sweeney. We need to support these practices with awareness of the power dynamics involved and move forward with care, ensuring that artists labelled with intellectual disabilities are supported to do what they want to do, to make their own choices, and have their artistic vision and work respected. It’s important to remember that autonomy is possible and necessary for all not just those artists labelled with intellectual disabilities who can name their desires in typical fashion. In Shain’s words, “Self-determination may be articulated in many different ways.”
The impact of attitudinal barriers and misconceptions of disability is real. “Disability is storied as a deficit and tragedy,” said Lee at a recent panel discussion, and intellectual disability perhaps most of all. Our work as artists has a role to play in addressing the social and material conditions of disabled people by approaching disability as a facet of human experience, and a rich one. “Disability Arts is a generative site, allowing us to dwell with disability rather than reject it,” states Lee. We need to dwell with and include the full range of disability, despite not quite knowing how to do that well. As Cook reflects, “We’re really afraid of doing it wrong, and so we don’t do it. We have to start doing things that we don’t have the answers for, do the best that we can and let that be the first step in a longer journey towards doing things better.”
For some organizations the journey has already begun. Although, as Ratcliffe points out, spaces like BEING are not enough. While the studio has connected her with a community of artists, exhibitions, speaking engagements, and education opportunities, she dreams of more. “Being part of the wider world would be better because we’re tired of being shut out from places. We want to be heard. People treat us differently because we have a disability. It’s frustrating. I may be different from other people, but I’m still human, and it doesn’t get me down that I have a disability.” What she wants from the broader contemporary art world seems simple: “The art world needs to welcome us with open arms, have ramps for us, have accessibilities for us. If we need something, let us have it or help us with it.” While this is currently rare, I have to believe that it is possible. It is the world that I want to live in, too.
The author would like to express their gratitude to all who spoke with them about this subject, including those who were not quoted above but who helped them think through these complex dynamics.
Aislinn Thomas is a disabled interdisciplinary artist. She gratefully works alongside and in the legacy of so many who out of necessity treat access as a space for creative acts. Aislinn is a white, cisgender settler of Ashkenazic and UK descent. She is thankful to live in Unama’ki / Cape Breton, on the ancestral and unceded territory of the Mi’kmaq.
- The author would like to thank Emily Cook for helping them articulate this.
- K. Fritsch, Crip Theory presented at the Society for Disability Studies Conference, Denver, CO (2012, June). The author would like to thank Sean Lee for introducing them to this compelling definition.
This article is published in issue 38.2 of BlackFlash magazine. Get this issue
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