Disability 101 (part 3): Disability Pride?

Written by Christopher R. Smit, PhD

Director of DisArt Festival, Director of the Arts & Access Initiative for Kendall College of Art & Design and Associate Professor of Media Studies, Calvin College

I’ve spent 40 years trying to make sense of disability.

I’ve done this work because I have a genetic disease called muscular dystrophy. I don’t walk; I rely on an electric wheelchair for mobility. I can’t feed myself, nor can I dress myself or comb my own hair. I depend on the assistance of others to get through daily life, sometimes from the people I love, sometimes from people I employ. My son was physically stronger than his father as a fumbling, tumbling toddler. I'm typing this article not with my fingers but with a voice activation program. And I've never publicly articulated my experience like this before. I've never outed myself.

I am a Disabled person, and I’m proud of it.

I don’t make a practice of writing or speaking with this kind of honesty. Instead, I often lean heavily on my identity as professor, author, activist and father/husband. Those identities make sense and are easily identifiable by those around me. These accolades offer me a power through which I am able to traverse the terrain of any given cultural landscape. More to the point, they act as a very sophisticated sleight-of-hand, a trick that captures the attention of my peers while diverting attention away from the physical realities of my body.

Consequently, my experience of disability is a tricky give-and-take between private narrative and public performance. And in some ways this is the albatross of experience itself: we all must make decisions about what to offer and what to conceal. We simultaneously hold the luxury of privacy and the potential of publicity. Community, as a result, works wonderfully when we have consensus on the qualities we may display, and those better left behind closed doors. The problem is that disability is generally cast as the latter.

Many disabled people in Grand Rapids, including myself, choose to keep disability private because it will make our daily experiences easier… or so we think. Being a closeted Disabled person means less discrimination in the workplace or social scene, less experience of isolation and so forth. But it also means that we carry with us the anxiety of smuggling our authentic experiences as cultural contraband. And that anxiety can be exhausting.

According to the 2010 U.S. Census there are roughly 20,000 Disabled people living in Grand Rapids, roughly 11% of our population. In the five years since, this number has no doubt risen. Imagine what it might look like if all of these folks didn’t need to hold back. What if they- we- could practice Disability Pride? What if we chose to celebrate our physical and mental differences? These ideas will no doubt first appear as counterintuitive within a culture that has medicalized and marginalized disability as something undesirable. If you’re disabled, you need to get yourself fixed, rehabbed, cured. Then, and only then, can you start feeling any emotion that might equal pride. Only when you are on the mythological road to recovery, only when you have overcome your disability can you celebrate your identity. Popular culture reminders of this mentality abound, from the Toyota Super Bowl ad featuring Amy Purdy (which I discussed last time), to the ads for the Paralympics by Nike, to the accolades heaped upon nondisabled actors who portray the experience of disability for the able-bodied mainstream.

Many members of the Disabled Culture criticize this recovery narrative because it makes way for disability to be controlled by nondisabled society. In other words, Disabled activists have fought a long time to actually own the experience of disability itself. And in that ownership comes the possibility of pride, self-love and disability celebration.

Disability should be identified as a cultural identity. In reality, this rarely happens. It would be good for us to remember that disability is a truly cross cultural identity; in other words, physical and mental differences occur alongside other cultural identities like race, class, gender, sexuality and so on. But this is a double edge sword– on one hand such a reality means that the identity of Disability permeates the many ways in which we identify ourselves, on the other hand it could be argued that disability is not a unique identity for the same reason. However, if there is social freedom for the Disabled person to speak honestly about her experience of difference, we may get closer to that moment in which we all might begin to see disability as a viable source of self identification.

There is another dimension to the complexity of identifying oneself openly as Disabled and that is the actual physical, mental and emotional stress of living as a Disabled person. All of this talk about Disability Pride can be very frustrating for those Disabled people who are not able for physical, economic and social reasons to flourish as active members of their community. Why, in other words, should we be proud of this condition that leads to personal and cultural oppression? The parent of a Disabled child, for example, might actually see the concept of Disability Pride as being superfluous, even a luxury. What they see and feel within their own experience of disability is quite different than a social movement of Disability Pride.

The hope is that as our society recognizes the Disabled Culture and Disabled Pride, we will also change our understanding of disability from personal experience to collective experience, from a phenomenon of alienated difference to an affirmation of common experiences. As a result, cultural learning about the complex, including positive, attributes of Disabled identity will trickle down through the systems that Disabled people work through in order to live their lives. Service organizations, medical institutions, rehab centers, the education system and many other gateways for Disabled people will shift their understanding from the immediate assumption of limitation to a new set of human possibilities.

Being “out” as Disabled can be a very powerful individual and political event. Disability Outing has the potential to provide a moment of emancipation for Disabled people as a collective culture. And I can already see this happening in Grand Rapids. I have been struck recently by the response I have received from other disabled individuals during our public DisArt events; when we as presenters are open about our disability experience, others are affirmed in theirs.

DisArt Festival 2015 will create environments in which all people, Disabled and nondisabled, can be free of social and personal restriction when it comes to identification. Gallery exhibits, artist performances, the fashion show, the film festival and our closing night of theater and drama will all contribute to an atmosphere of acceptance of physical, mental and emotional difference in our city. In addition, it may bring Grand Rapids closer to a point in which it can celebrate all of the many ways in which disability is experienced by its citizens.