Thursday, March 06, 2008

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.

Wednesday, February 20, 2008

My 50th

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.