Prompted by Regan Linton and Andrea Moore
On Medium, “Embodied Time, Affective Labor“ by Mary Grace Bernard, in response to Tilt West’s roundtable, Every/body: Art, Representation & Accessibility
On July 26, 1990, President George H. W. Bush signed the Americans with Disabilities Act (ADA) into law. This groundbreaking, comprehensive legislation prohibited discrimination against and provided equal opportunities for people who experience physical, cognitive, and developmental disabilities.
In the twenty-nine years since the bill was passed, we have certainly witnessed progress in the areas of inclusion and accessibility:
- Public transportation and public spaces are more accessible
- Employers are legally prohibited from discriminating against people with disabilities
- Communications and technology have improved, empowering people with disabilities to better express themselves and self-advocate
However, as we approach the 30th anniversary of the ADA signing next year, we still have a long way to go to ensure equal rights and opportunity for people with disabilities. Today, a lack of health care, attendant care, affordable housing, and transportation continues to marginalize the disability community. The rate of unemployment for folks with disabilities is more than twice the rate for folks without. Social services and supports are famously underfunded, and inequity is rampant in educational institutions. One in four Americans identifies as someone with a disability, yet you wouldn’t know it by the near-total lack of representation of people with disabilities in art, media, news, and pop culture.
The sum of these challenges describes ableism. Ableism is the discrimination and social oppression of people with disabilities. People with disabilities are viewed as less valuable to society, or even less than human. It can seem that the only options for disabled people is to play the role of monster, or mascot. Both options are “other;” neither is fully human.
But how do we go about embracing the humanity of people with disabilities? Was there ever a time in history when they were more included than today? Or does progress move only in a straight, chronological line, in which today is better than yesterday, but not quite as good as tomorrow? One thing we can be sure of is that representation in pop culture, art, and media goes a long way toward determining our narrative about who is and who isn’t “one of us.”
Throughout history, people with disabilities have been here all along, making ordinary and extraordinary contributions. While their accomplishments remain, many of their disabilities have either been erased or framed as obstacles to overcome, rather than as essential aspects of their lived experience, fueling their success. Artists Frida Kahlo, Henri de Toulouse-Lautrec, Stephen Wiltshire, Vincent Van Gogh, Ludwig van Beethoven, Francisco Goya, Henri Matisse, Octavia Butler, Ray Charles, and so many others are celebrated for their creative genius, but not necessarily in concert with recognition of their disabilities. Is it fair or even accurate to elevate one element of their identity without the other?
In order for disability to be more accurately represented – in our stories, in art, in the media, and the workplace – we need a better understanding not just of what disability is, but of what it is not. Disability is not a defect of mind, body, or character. It is not something to overcome, nor is it something to inspire. The quest for true inclusion begins with a simple question: what does it mean to be human? Then, as artists and activists, we might wonder: what role can the arts play in accelerating a more inclusive understanding of our shared humanity?
Suggested Background Readings and Media
Video: An Examined Life, a conversation between Judith Butler and Sunaura Taylor: https://www.youtube.com/watch?v=k0HZaPkF6qE
TEDx Talk: I am not your inspiration, thank you very much, by Stella Young: https://www.ted.com/talks/stella_young_i_m_not_your_inspiration_thank_you_very_much?language=en
Denver Post article about disability representation in film: https://www.denverpost.com/2019/02/01/guest-commentary-as-a-quadriplegic-film-professor-ive-been-asked-if-i-find-the-upside-offensive-well-do-i/
Artists with Disabilities (Wikipedia category): https://en.wikipedia.org/wiki/Category:Artists_with_disabilities?sa=X&ved=0ahUKEwinjP2c36bjAhWOVs0KHWapDCoQ1i8IKTAL
Inclusive art gallery for artists with intellectual and developmental disabilities (I/DD): https://www.creativityexplored.org/
Phamaly Theatre Company’s Video Series, How to be a good _________ to a person with a disability:
- Stranger – https://www.youtube.com/watch?v=dSf32CWJYBs&t=13s
- Friend – https://www.youtube.com/watch?v=EVIWSU8apuA&t=11s
- Lover – https://www.youtube.com/watch?v=ABVnW7avVcE
About the Prompters
Regan Linton, MSW, MFA, is an actor, writer, director, and Artistic Director of Denver’s disability-affirmative Phamaly Theatre Company. As a wheelchair user leading a major US theatre company, Regan has become a nationally-recognized advocate for equity and disability inclusion in the arts, serving on numerous initiatives including the national JUBILEE, Colorado’s Community ACTS Fund, Denver’s Art of Access, and Meow Wolf’s Community Advisory Committee. Professional acting credits include Oregon Shakespeare Festival, La Jolla Playhouse, Mixed Blood (MN), the Denver Center for the Performing Arts, Pasadena Playhouse, Phamaly, and Apothetae, and writing features include New Mobility Magazine, Theatre Forum, and TCG Diversity Salons. http://www.reganlinton.com/
Andrea Moore is a social artist using writing, performance, and photography to foster connection and dialogue across social and cultural lines. She is also the co-founder and Executive Director of a nonprofit organization called The Wayfaring Band, which creates opportunities to increase leadership and life skills through travel for adults with and without cognitive and developmental disabilities. As a working artist Andrea explores themes of social and cultural belonging, creating original stories that reflect her experiences and travels near and far. In her capacity as Executive Director for The Wayfaring Band, Andrea helps facilitate opportunities for independence, socialization, and adventure as part of a neurodiverse community. http://www.andreamoorearts.com/