When I was first diagnosed with fibromyalgia, I was in denial. For years, I only referred to myself as sick, never as disabled; to me, disability was entirely different and far worse than my condition. Disability conjures up images of sad people in wheelchairs, and I might have been sad but I was not in a wheelchair. Now, I am less sad, even happy most of the time, and I still do not use a wheelchair, but I proudly call myself disabled. In the time since my diagnosis, I have discovered the disability community and the strength and diversity that it contains. Instead of the dominant dialogue in my life coming from doctors trying desperately to explain my symptoms, I engage more with disability activists fighting to legitimize accessible ways of living. Moving past my impairment, I have found great personal meaning in my disability. This process of self-acceptance has been greatly inspired by the artists from my community who break ableist norms. From Deaf musicians to physically disabled dancers, activists are revolutionizing their fields and creating spaces for themselves. Yet, we still see a non-disabled monopoly in artistic fields, the media is still ableist in nature and artistic spaces are not inclusive. Building from the work of community members is key, because art is essential to fully breaking down ableism.
The social model of disability is the most prominent approach in disability art. Unlike the medical model which “locates the ‘problem’ of disability within the individual and considers functional limitations or psychological losses to arise naturally from the individual deficit”, the social model “encompasses all factors that impose restrictions on people with disabilities, ranging from negative social attitudes to institutional discrimination, from inaccessible public buildings to unusable transport systems, from segregated education to exclusion in work arrangements…” (Hirandani, 2005). The social model comes from the community, much like disability art, encouraging folks to “contest existing ‘expert’ discourses on disability by actively collaborating with people with disabilities and their advocates” (Hirandani, 2005). Promoting understanding, disability art provides an outlet for expression and methods for storytelling. The issue is whether the general population is listening.
Why are disabled artists so important? Is the current method of including characters with disabilities into existing popular media not enough? For some, maybe, but activists are not satisfied. Art in the disability community originated in opposition to “images of disability, historically produced by non-disabled people, [which] have been rooted in paternalism, prejudicial stereotypes, a charitable ethos, and assumptions of the dependency of disabled people” (Hirandani, 2005). Mainstream media is by and large produced for and by non-disabled people. Even though “people with disabilities make up nearly 20% of our population, they are still significantly under-represented on television.” Furthermore, “even when characters with disabilities are featured on the small screen, they are far too often played by actors without disabilities”; “according to the ADA’s [Americans with Disabilities Act] definition more than 95% of characters with disabilities are played by able-bodied actors on television” (Rutherman Family Foundation, 2016, pg. 1). The few stories acknowledging a significant marginalized population are controlled and performed by people with no investment in authenticity and activism, leaving our stories in the hands of others.
If mainstream media refuses to include us, we are forced to create alternatives. Fortunately, without the limitations of conservative corporations, artists are free to be radical. Disability art serves as a “forum for critiquing dominant forms of cultural representation” (Hirandani, 2005), allowing folks to point out flaws and share their frustrations among sympathetic circles. Instead of pacifying the masses and editing our experiences, disability art is bold and unapologetic, focusing on “individual and collective empowerment and pride” (Hirandani, 2005), building a community to provide support we would otherwise lack. Medicalization aims to categorize and separate, but communities join together, making every member stronger and more capable of creating change. Disability art is contentious not only in its perspective on disability, but also in its general purpose. Mainstream media tears down difference, idealizing one way of looking and one way of living. Conversely, disability art “fosters pride…, creates positive self-images, and envisions a society, which not only accepts, but also celebrates diversity” (Hirandani, 2005). Coming from a place of oppression, artists do not participate in the harmful labelling they have experienced. Disability art showcases an alternative perspective greatly needed to counteract the limited scope of dominant discourse.
When people with disabilities are excluded from the arts community, they create their own spaces, even when the nature of their disability presents unique challenges. This is perhaps most apparent in the creation of Signed Music. Signed Music was developed by the Deaf community as an alternative to traditional music in the hearing world. Songs “may or may not be created with lyrics”, but always utilize “visual performance practice with structured hand and facial movements with unique traits” (Canadian Cultural Society of the Deaf, 2016, pg. 6). Signed Music is different from signed songs “originating from spoken language” (pg. 5), referring to the recent YouTube trend of hearing individuals signing along to popular hearing music. With signed songs, Deaf folks “do not feel they have the ‘right’ to express their own creation freely as an outgrowth of their original Deaf artistic exploration” (pg. 1). To combat this feeling, instead of directly translating songs from the hearing community, artists have revolutionized a medium from which they were fundamentally excluded.
Through Signed Music, Deaf artists have expanded the definition of music itself: “music is everywhere – in nature, in the movements of the planets, in mathematics, in visual arts, in architecture and in signed language poetry” (pg. 5). Refusing to accept the ableist definition of music, American Sign Language poet Ella Mae Lentz took inspiration “from watching telephone poles and telephone wires “dance by” like visual music while riding on a train” (pg. 7). Some would argue Signed Music is not music at all, comparing it more to dance or cinematography. Yet, that is how Deaf people experience music and see the world. Hearing people have a narrow view of music which does not go beyond the auditory, therefore understanding Signed Music as a concept can be confusing. The confusion makes it even more important. Signed Music forces the viewer to look beyond their preconceived notions and consider disability’s role in creation. Without deafness, this holistic approach to music would not exist. Building on the power of sign language to provide autonomous communication, Signed Music proves that even the most seemingly contradictory elements — music and deafness — can be united with creativity and community mobilization.
Similarly, physical disabilities and dance are not mutually exclusive. All bodies have physical limitations. For some reason, limitations caused by disability are seen as the most tragic and insurmountable. Wheelchair-users often cannot will themselves to walk but, to dance, you do not need to walk. Propeller Dance company proves that with its motto: “If you can breathe, you can dance” (Abilities Magazine, 2012). Propeller Dance brings together disabled and non-disabled people in the same performing group. To centre disability, “the company’s focus is on… creating choreography from movements that the dancers develop” (Abilities Magazine, 2012) instead of accommodating them in existing routines. The shared responsibility between the disabled and non-disabled members facilitates partnership and reduces power imbalance. Instead of excluding, art is used to unify: “I’m really comfortable with all kinds of people. We dance together. We’re good friends” (Abilities Magazine, 2012). Disabled people are often segregated or seen as a burden. In this case, Propeller Dance goes beyond integration, viewing difference as an asset. Shara Weaver, a co-founder, is quoted as saying: “Finding the common ground among dancers whose bodies are innately different from each other is creatively interesting” (Abilities Magazine, 2012). Being a physically disabled dancer is subversive by nature, allowing for all the rules to be played with. There is freedom in being contrary to the norm.
Propeller Dance company uses its platform for activism from art; “at schools, they include a question-and-answer session with the students to deepen their understanding of integrated dance and increase disability awareness” (Abilities Magazine, 2012). In line with disability art, the perspectives are coming from the community. Liz Winkelaar, a paralyzed member of the dance company, joined because she “wanted to balance that purely academic approach to disability.” When faced with adversity, “You have to be more assertive about your right to be included,” creating space where it did not previously exist. Member Moni Hoffman is quoted saying: “Dance is who I am.” Art is a source of meaning. Exclusion from art is exclusion from expression.
Disability art demonstrates that “disability is a vantage point, a perspective, a way of experiencing the world” (Sandahl, 2002, pg. 18). The purpose is to acknowledge that perspective, both to educate and validate. In contrast to mainstream media portrayals in which “disability is rarely considered anything but a problem, we need to find new ways of describing the experience” (pg. 19). Furthermore, we need new ways of sharing these stories. Signed Music and Propeller Dance are examples of just that, but what about the theatrical arts? Actors remain a step behind, having “challenged dramaturgical content by dismantling oppressive narratives, few challenge theatrical form” (pg. 21). Learning from the capital-D Deaf community, “we must pay attention to our impairments as well as our disabilities” (pg. 21) to fight for full access. Adding to Signed Music, the space in which performances take place must be altered. “How might consideration of disability transform the aesthetics and use of theatrical space altogether” (pg. 23)? The configuration of theatre spaces communicates what voices are valued and who is worthy of consideration. In theatres “without disability access, disabled people literally cannot enter certain spaces, even when granted ‘permission’” (pg. 24). This sends a silent but powerful message to disabled performers: your story is not valid and your art is not wanted. Accommodations can sometimes be made if a performer advocates for themself and if they are considered worth the effort. Even then, their needs are an afterthought, not considered as important compared to the needs of others. There is fantastic art in the disability community that will never be seen if performance spaces do not exist; revolutionary art is at the mercy of designers. In all of Toronto, there are only two venues considered fully accessible, The Garrison and D-Beatstro, meaning “it’s the responsibility of the person with the disability to find solutions to problems that shouldn’t be there in the first place” (Rizza, 2017). Our next step is demanding accessible venues, demanding consideration and expecting to be viewed as worthy of entering buildings.
Disability art is powerful, not only in its ability to redefine entire types of media, but also in redefining personal experience. For folks like Syrus Marcus Ware, “survival is in large part due to the ‘black crip magic’” (2016) found in the racialized disability community, specifically “the power and beauty of black disabled activists and artists making change, creating space, innovating, producing challenging and brave new works and articulating potential futures and ways forward together” (Ware, 2016). Without this magic, “autoimmune flare ups” which “affected when, how and where [Ware] worked” might have been crushing. However, our community presented “wonderful, new challenging career opportunities, new collaborations with wonderful artists and new kinds of organizing and mobilizing options manifested” for Ware, healing emotionally instead of physically. The flare ups cannot be helped, but the framing can.
There are limits in disability art that do not exist in mainstream art. For Ware, a new challenge presented when he “couldn’t see at all, and then not well for weeks” (Ware, 2016). Compromised vision forced him to abandon his current hyper-realistic art project to instead “pause in the middle of a storm, to be humbled, to be human in moments of unreal chaos” giving him “time to lie in the grass, imagining the sky” and allowing himself to “reach out to people, to be offered and to accept help.” Living a disabled life means questioning non-disabled norms forced upon you. For artists, “our value is measured by what we make. But what happens when we can’t make?”
Lynx Sainte-Marie, a black disabled spoonie (member of the pain-disorder community), produces art to heal themself and others. Their piece at Cripping the Stage articulated a “futuristic world where the experiences of folks with disabilities were seen as an appropriate reaction to a violent system.” In this world, “our bodies and minds were magical reactions allowing us to tap into another realm with essential messages for the survival of all life on this planet.” In their piece, “the survival of life on this planet relied on disabled people.” The premise is hyperbolic, but not unfounded. Disabled people are more in-tune with our bodies because we have to be; ignoring the painful messages being sent to us is not an option. Our relationship to our bodies is complex and often unreliable. For artists who utilize their bodies in their work, this is especially frustrating. Instead of being frustrated by the signals our bodies sends, Sainte-Marie proposes we be thankful. Our bodies might force us to alter the plans, but our bodies also force us to slow down and take care of ourselves. Ultimately that is more important and non-disabled people benefit from similar reactions.
There is a wonderful message of self-care in Sainte-Marie’s piece, but it goes beyond that. Ware, for example, exchanges gluten-free baked goods with a friend through mail. By thinking about each other and ensuring access to allergen-free foods, they are practicing collective care. Disability art is another way we practice collective care. Artists like Sainte-Marie remind us of our magic. We use art to communicate with one another, allowing us to feel heard and understood. Disability art is a love letter to your community, reminding them they are not alone.
My relationship with my disability is not easy to explain. It causes me constant pain and never lets me feel rested. My disability is also a source of strength. Mainstream media would have you believe that disabled people are insignificant, when really we are all around you. Non-disabled actors portray us a certain way, mystifying disabled ways of existing. We have refused to accept that. Deaf folks have redefined music and wheelchair-users prove anyone can dance. Access to theater spaces is still limited, but progress is being made and activists are not giving up. Instead of being discouraged, the lack of consideration is a platform for more change. Not only is disability art educational, it is also healing. Though reaching out to the non-disabled majority is important, we cannot forget about our community members. I am not an artist, but the work of folks like Syrus Marcus Ware and Lynx Sainte-Marie inspire me. I have been lucky enough to meet Sainte-Marie and subsequently become Facebook friends with them. Even when gallery space is not offered or cannot be accessed, simply posting your disability magic online promotes collective care. I proudly call myself disabled and I identify as a spoonie, a term deeply embedded in my community. I am learning how to live a disabled life and how to not hate myself for doing it. My body is revolution and my body is wisdom. That is what disability has taught me.
Written by Katarina Kahnert-Wolchak.
Abilities Magazine (2012). Shall We Dance? Experience the Magic of Movement With Integrated Dance in Abilities Magazine.
Canadian Cultural Society of the Deaf (2015). Signed Music Rhythm of the Heart in Deaf Arts Handbook Series, 2, 1-19. Toronto, ON: Canadian Cultural Society of the Deaf.
Hirandani, V. (2005). Towards a Critical Theory of Disability in Social Work in Critical Social Work 29 (1).
Rizza, A. (2017, March 28). Disability Art: How Do You Participate If Only Two Toronto Venues Are Fully Accessible? in The Eyeopener.
Sandahl, C. (2002). Considering Disability: Disability Phenomenology’s Role in Revolutionizing Theatrical Space in Journal of Dramatic Theory and Criticism 16 (2), 17-32.
Ware, S. M. (2016, December 28). Magic from the madness: On black disabled activists and artists making change in 2016 in CBC News.
Woodburn, D., & Kopić, K. (2016). The Ruderman White Paper on Employment of Actors with Disabilities in Television (pp. 1-41). Ruderman Family Foundation.