December 6, 2010

I have been actively writing a brief for the ROM so tonight I will share something I wrote on April 15, 2009.

Struggling Out of the Disability Box
Recently I viewed the documentary “Shameless” which is a celebration of Bonnie Sherr Klein’s return to filmmaking after being rendered unable to pursue her career for many years by two strokes. The video is shot in company with four others who are similarly accomplished artists who self identify as disabled. The following is the text of my comments to Catherine Frazee who is featured in the documentary and who is a professor at Ryerson University’s School of Disability Studies. I am hopeful that she will post a reply.

“I feel estranged from the growing crowd of advocates with disability who are actively giving definition to the disability culture. I watched the video with longing and sadness, of course recognizing myself sitting behind you in the scene where you spoke at the Latimer vigil that cold February morning. I was not chosen to be a part of creating Shameless. If I had been asked I likely would have said “No”. I am not part of the Ryerson gang. Though I am an artist, and paint regularly along side of others who are considered to be disabled, likely I will rarely choose or be asked to participate in disability arts events. I’m not complaining – I exclude myself.

The watershed is simply that I continue to believe in and to explore the possibility that I am not disabled, and that no one else is either. This mission of mine drives a wedge between me and my colleagues, such as yourself who is avidly creating disability pride and disability culture.

Last night and today some thoughts gelled, so I write to clarify and share them, and hopefully elicit a response.

In Shameless Bonnie Sherr said something like: “Once I was a person who made documentaries. Then I was a person with disabilities. Now I am a filmmaker with disabilities.”

What struck me is how in this statement “disability” is pretty much equivalent to “making documentaries”, in the sense of being a vocation or mission. It’s as if Bonnie is saying: “My first and chosen mission in life was to make documentaries, my second, forced/surprise mission was to be disabled, and now I can have both vocations.”

This is interesting to me because I am currently struggling to get myself out of what I see as a career box. Before I became involved in disability rights and inclusion I was training to be a psychological counselor and also interested in Mathematics. The sort of life choices that you are very familiar with presented themselves, and from 1976 until now every career choice has been related to disability. Not to go into details, I am now strongly suspecting that I was recently refused a job due to discrimination based on….. It’s subtle. Certainly the discrimination, if that is what it was, is not a blatant refusal to recognize my abilities. However, my career history cannot document the explicit credentials. Of course it can’t – getting the credentials was never open to me. I have equivalent experience, but it doesn’t look typical. But there in lies the discrimination. Why does it have to look typical?

So disability can indeed be a career. But it is not my ability and function, or absent ability or function, that is the basis of disability as a career. Nor is it Bonnie’s alteration in ability and function. Bonnie is a top notch creator of documentaries, before and since her brain injury, as well as a superlative wife and mother. These are her careers. What makes “disability” a career is our society’s insistence that this is who we are – disabled!

When I examine the word and the concept I see three things.

1) Disability as loss of function – the injured baseball player is placed on the disabled list. Such a person is expected to recover the same functions. When a person such as Bonnie recovers to different functions, or Catherine and Judith build a life without every having certain functions, are we thinking about and experiencing the same phenomenon. I don’t think so.

2) Disability as career. (see above)

3) Disability as opposite or counter to ability. Is a Black person a non-White? Is a woman a non-male? Is a lesbian not a woman? Of course these ideas have existed. Mostly they have been put in history’s waste basket. Why do we choose to explain ourselves in these terms as if ability were a linear phenomenon and our job is to keep on explaining that we didn’t really get the raw end of the stick?

I am struggling in three ways. First I am struggling to know who I am – myself. To the extent that I can own but not be driven by the above named misperceptions, to fight but not be defined by the constant erosion of the supports I use to participate in life, plus not be dominated by the spectre of poverty always lurking and all the other life degrading cultural phenomenon we all face, I am in constant search to know myself as real.

Secondly, I am struggling to make personal assistance visible. I was struck by the absence of personal assistants in Shameless, though this is not meant as a criticism since the presentation was complete in itself. However, neither Pat nor Michael is a typical partner, and there are others besides Pat in your own life who assist you in your creation of your life. I believe that for others to realize that we are not bad copies of the people we should have been, the contributions that we make to those who assist, and they to us, must be made visible and celebrated in the world. This work is also part of ending the hegemony of individualism.

Lastly, I struggle with the invisibility in the disability pride world of those who don’t speak and who are usually labeled as “profoundly developmentally delayed”. Since the early ‘80’s I have intentionally sought to know and understand the experiences and contributions of quiet people - people who live nearly exclusively through the bodies and voices of others. Their presence and contributions are evident, but generally ignored, misrepresented and discouraged. From the “independent living” movement until now not many have been willing to acknowledge that “they are us” too.

I deeply wish that we had another set of words and phrases to express the infinitely rich sphere of ways that human bodies show up on this planet, and the wonderfully rich, uncountable contributions this makes possible. Such words would make visible that human ability and the careers we pursue are related, but not the same, phenomenon. Such language would give us a strong foundation for not just accepting and tolerating, but fully celebrating, diversity. Such conversational capacity would put you and me on the same side of this fundamental liberation movement.

But for now I am simply stuck with saying and writing that I am not and never have been disabled.”