Blackbird Singing

Glee and disability

2009-11-14T19:10:00.000-08:00

There be possible spoilers ahead!

The most recent episode of Glee, the new Fox television show about a struggling Glee Club, has stirred up some controversy in the disability community. At least in my corner of the disability community. You see a continuing character on the show is a wheelchair user, at least the character is a wheelchair user. The actor playing this part is able-bodied.

It's felt by some that characters with disabilities should be played by actors with disabilities. I understand the impulse as a failed actor, who uses a wheelchair, I'd like to see more working actors with disabilities. There are a few, just not many. Since casting directors, producers, networks rarely cast non-stereotypically, an actor is limited to roles specifically written as people with disabilities. There aren't many parts like that and unfortunately 99% of characters who have disabilities are played by actors without disabilities. If you're an actor sitting in your wheelchair, that makes a difficult career almost impossible. Now some actors have beat the odds. Marilee Matlin, Daryl Mitchell, Billy Barty, and others, but the job pool for actors with disabilities is seriously shallow.

As an artist, I'd like to think the person with the most talent would get the part in any dramatic endeavor. Which would mean female actors should be able to play parts originally intended as male. African-Americans could play parts intended for Lithuanians etc. etc. Unfortunately that doesn't happen very often. So the disability community is often left to protest able-bodied actors taking roles of people with disabilities from actors with disabilities.

Along with this ongoing struggle is the actual depiction of people with disabilities in the media. I watched the most recent episode of Glee and was very disappointed in this story intended as supportive of diversity and (at least this week) of people with disabilities specifically. The class is getting prepared for competitions and Will (the Glee Club coach) has requested a lift equipped bus so Artie can ride along with the rest of the team. The principle denies the request saying the school can't afford it. Not once is the Americans with Disabilities Act mentioned. Our most important legislation to provide people with disabilities equal rights isn't an issue in this make-believe Glee Club land.

Will suggests the Glee Club hold a bake sale to earn money for an accessible bus. Once they've made the money to get the bus, Artie (the wheelchair using Glee Club member) offers to use the money to provide more ramps in the school because he says the bus is effectively just for him where the ramps would provide more access to lots of others. A classmate says this would be a great idea, because then they wouldn't have to carry him (Artie) into the theater for Glee Club rehearsals. What?! They have been carrying him into class every day? That is not what I would call reasonable accommodation for anyone. It's discouraging that in 2009 so many very basic principles to assist people with disabilities in assurring our equal rights are either unknown to the show's creators or they are just ignoring them.

Will also suggests that in order for Artie's classmates to be more sensitive to his life that the Glee Club should all use wheelchairs for three hours a day. I know it used to be (and still is at times) popular to have the able-bodied "experience" life as a person with a disability. I have always thought that this particular exercise trivializes the lives of people with disabilities. No one can get any closer to understanding our experience by spending any defined period of time sitting in a wheelchair. Because a non-disabled person always knows they can end the experiment anytime by just standing up. It's insulting to suggest that spending a little time sitting in a wheelchair or wearing a blindfold or earplugs is illuminating.

I also thought the show demonstrated a basic misunderstanding of disability. Having a disability isn't just being a wheelchair user or using crutches or having a seeing eye dog. Disability is much more diverse than that. Disability includes intellectual disabilities, learning disabilities, anxiety disorders, psychiatric disabilities and combinations of all of these circumstances. It's true that one of the storylines dealt with with cognitive disabilities, but the main story line with Artie and the Glee Club undercut the little that was good in the episode.

Artie's ongoing crush with Terri ends badly in this episode. Throughout the episode Terri begins to ask about Artie's disability. Most of the time he relates his frustrations with Terri's struggles with her stutter. Eventually, Terri confesses to Artie that her stutter is an affectation. She is very shy and discovered that with a stutter people expected less from her. She could stay in the background where she was more comfortable. Artie responds badly suggesting that her pretend stutter was just being dishonest and not an attempt at dealing with a difficult anxiety disorder. Which left the impression that somehow Artie's disability was "real" and in need of understanding. While Terri's wasn't. All in all it was a pretty disappointing episode.

2008-03-06T10:58:00.000-08:00

I came back to California in 1980. The first thing I did was go to the Center for Independent Living. There, I found listings for accessible apartments, personal attendants and help getting my benefits straightened out. I also found a community. Folks who were maybe not exactly like me, but who knew the terrain. They were deaf, or blind, or used a wheelchair or may have had difficulty walking and still managed. I learned about this new community at the wheelchair repair shop that CIL operated. Wheelchair repair was our barber shop. Often we would just hang out there. Not needing any work done on our wheelchairs, just there to hang out. We talked about what then Governor Reagan was doing to programs we depended on. We planned our responses. Organizing van rides to Sacramento. Gathering money to bail out fellow community members who had been arrested doing civil disobedience. There I learned how to be an advocate by listening to my sisters and brothers. Learning from those pioneering advocates like Ed Roberts and Judy Heumann.

That wheelchair repair shop was run by Andy. When Governor Reagan's cuts caused CIL to discontinue their wheelchair repair services. Andy got a job at Shield which was a medical supply company that was trying out a wheelchair repair service at the time. I went right along with Andy. Getting my new batteries or getting my front wheel forks straightened out after hitting a pothole a little hard. He helped modify my chair so it was more comfortable or more useful. The wheelchair repair shop there wasn't quite the hub of our community anymore, but we still connected with each other while waiting for our batteries to charge or for Andy to weld the new modification on my lap tray. I got to be friends with many of the other wheelchair repair technicians. There was Paul and Chuck and Gail and many others. Paul is in intensive care right now at Summit Hospital. He has some kind of undiagnosed infection and I'm not sure if he will recover. Chuck is retired. I'm not sure what happened to Gail and many of the others.

Once Shield made it too difficult to work at their wheelchair repair shop. Andy decided to start his own place and Wheelchairs of Berkeley was born. It started out in a small storefront on University Avenue. Later, it moved to a larger site on University and finally ended up on Shattuck across from the Berkeley Bowl where it has stayed for what, more than 10 years? Andy opened two more shops. One in San Francisco and another in San Jose. The San Jose shop never really took off. I believe the San Francisco shop is still there. The wheelchair repair shops slowly changed. Some people didn't like the changes Andy was forced to make. Some for financial reasons others because Medi-Cal and Medicare regulations changed. His shop got a little less friendly a little less flexible. Some wheelchair users moved on to a place in Emeryville that felt more like the old Wheelchairs of Berkeley. I stuck with Andy, a little out of loyalty, a little out of habit.

Andy still gave me a friendly hard time every time we saw each other. Making jokes about the latest blow up in our community. I didn't see him as often anymore. I mostly had my wheelchair worked on by employees. Some I knew almost as long as I knew Andy. Others became friends, maybe not close friends but still friends. I probably got better treatment than other customers just because everyone had known me forever it seemed. Yesterday on a local Berkeley disability list I found out that Andy had sold his interest in Wheelchairs of Berkeley in November last year. He is now living in Oregon looking for a new project, a new direction for his life. I'm not sure if people will get this, but I'm a bit in mourning. A huge chapter in my life is ending. I e-mailed Andy and thanked him for all these years. I wished him well and told him I'd love to keep in contact. I'm not sure we will manage to stay in contact but I hope we do. Today I'm feeling a little wistful for those times when I had community. When we were fighting the good fight together.

My 50th

2008-02-20T10:45:00.000-08:00

Tomorrow will be my 50th birthday. It's kind of a startling statement to me. 50. I keep getting hit with the realization that I've been on this planet a pretty long time. Things that seem really recent like the 80s are a really long time ago for some folk. It is a really long time, and I'm not supposed to remember long ago. I'm the youngest in the room. I'm the one that doesn't get references to The Shadow or Fibber Magee's closet. Nowadays, I'm often the oldest in the room. I saw Star Trek when it first appeared on television. I remember the lunar landing. I remember so many assassinations; John, Robert, Martin and Malcolm.

When I was 3 I had no right to an education. Disabled women were regularly sterilized in ignorance and for their "own good". Nobody heard of a curb cut. Later, doctors told me not to count on a long life. My parents, never expected me to go to high school or college. They thought I would stay with them until they died and then perhaps live out the rest of my life in a nursing home. After all, that's where many people with disabilities ended up, they still do because of the lack of community-based attendant care. Yet I got through high school and even through college. I never managed a full-time job, but I'd like to think that my volunteer work has made the world a little better.

This year has been a rough one for me and for mine. Sickness has left me feeling fragile. I'm closer to the end of my life than the beginning and I'm hating it. I try to concentrate on the good stuff. All the people who love me and take care of me. All and wonderful people who make me a little part of their life as I make them part of mine. I never expected to make 50. I thought I'd made peace with that long ago. I was wrong.

I hope I find someway to cope with what's coming. I'd like to think that I have a little of that stubbornness I'm so proud of left to deal. I've said this many times in the last several months. This has been one of the hardest years of my life, but it is also the year that I realized how well loved I am. Carol, we've been together for longer than we've been with anyone. Thank you for this life we've made. Serene, thank you for this life we've made. And to the rest of you, my chosen family, my blood family and to all my friends: Thank you for the life we've made.

My First Post Here

2006-08-26T16:05:00.000-07:00

When I'm online I tend to hang out at Livejournal, a few polyamory and disability related list serves, or alt.polyamory. I started this blog as a place to to put my longer meanderings. I tend to start these projects with good intentions. In this case I intend to write something fairly regularly here. We will see how that goes. Anyway, if you happen to stumble upon this blog, welcome. Hopefully something will be interesting or entertaining here. Thanks for taking the time out to read my blathering. Feel free to interject your own thoughts or feelings here.