Ed Roberts once said that his biggest mistake was calling it the independent living movement instead of the *interdependent living* movement. So Ed, one of the major players, was certainly aware of naming this movement.
chuck as always, I greatly enjoy your posts. A book needs to be written about Berkeley movement. I wonder if the Zames book does that? Her new book is called "The Disability Rights Movement." Do you know?
best, Marta
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Thanks Marta. You know I have not read a thing on disability---except your book---seriously. I can't stand reading most of this stuff.
Part of the trouble is most of the people I knew are dead, the political scene here has altered beyond recognition, and whole generations of completely paternal/maternalistic/materialistic bureaucratic lackies have grown-up and prospered in their place. Exactly the kind of people we used to call enemies.
Oh, well.
Some notes on Ed Roberts. The last time I saw Ed, he was seriously declining. Post-polio syndrome and his heavily compromised breathing were taking their toll---this was a little under a year before he died. I was working as a rehab equipment sales guy (they are all total scum, including me for doing that) and I had been to out to Fairmont Hospital trying to woo the head therapist (knee pads?). There were two guys I had known in the old CIL days stuck in the respiratory unit. They had also declined a lot and moved back into this county hospital. I called up Ed and we drove down to San Leandro to cheer these guys up and try to convince them to move out again, that they (and the hospital social worker) could find an apartment and we could get a couple attendants to help them move and then live with them once they were out.
It was like the old days. God it was great to see these guys cheer up and start talking shit about the hospital and the nurses. They fucking moved out! It was great. Ed was very good at this kind work.
The point though is, that Ed was a complicated guy and a total bullshit artist (or politician) of the first order. For public appearances and to pull on the public heart strings (read political support) he would put out this terrible sentimental crap. When the cameras turned off and the interviewer left, he was a whole other person. He was pretty hard core radical with a fairly cynical edge.
He used the `human interest' and `sympathy' angle on disability entirely for the benefit of the media---exactly because he knew the media loved that crap and would not under any circumstances report, show, or acknowledge the serious political and economic issues at stake. This later came around to bite him in the ass, because he was considered by newer groups around here to be the sort of sickening and sympathy seeking persona he appeared to be in the media and in local political lore---which the Levy `history' managed to capture almost perfectly.
So, he found himself doing a parody of himself on tv. And probably the worst thing is that media image was communicated to other disabled groups around the country and it became what the disabled political movement was supposed to be about. It's now enshrined in the Smithsonian, so it will never get corrected by reality.
So, now that you mention it, I remember thinking about this whole business in `80-1 when I was working at DREDF (Disability Rights Education and Defense Fund---I know you know, but the rest of list might not). We did 504 civil rights training conferences in the western states (every boring major city in region nine---except I missed the one in Hawaii), and we kept running into this concept of the `movement' from local ILC's. We tried to beat it through their skulls, this was about civil rights, not about getting society or your local community to like you or give you some special break. A lot of cities and their disability organizations were really offended by us. (We started joking about Freedom Riders in Mississippi, and FBI plots to get us all shot.)
After doing a couple of workshops on organizing emergency wheelchair repair and transportation, I quit doing workshops. It was like talking to a brick wall. After that I just went to the bar with the deaf trainers and their interpreters who were fun to party with. I guess if I thought the deaf were better company, there is a message in there somewhere.
I can't resist this last Ed Roberts story. Ed was scared to death of driving a power chair. He could only move his left ring finger and little finger enough to handle a joystick so it took a huge amount of modification to get the machine to work for him---I am talking hours of pissing around with the joystick putting in mini-micro switches and taking out potentiometer springs and all sorts of other things.
His real motivation to get a power chair was in large part to escape from Mark his younger teenage brother who used to torture him by pushing him around campus at break neck speed---complete with screaming `Brooom Brooom' and making other fake race car noises to get through crowds on campus. It was extremely embarrassing and humiliating---Ed hated it, Mark loved it. Mark also used it as a way to keep Ed from using him too much as a free service (exploited domestic labor). Love had nothing to do with it. It was all hate and humiliation as usual.
So, I'll look up the Zames book.
You know my problem with all this is first of all I am not disabled and a lot of the people around here who might be interested in such a project already have their own vested political and policy interests in keeping particular sections of official movement history intact. This is because a lot of this material tells a nice progressive sounding story, without becoming thoroughly radical and threatening to the existing political climate in state and federal government---were all those grants and personal favors come from. You are aware of all this I know, since your book blows a lot of this mythology apart.
So in some ways putting together a more seriously realistic history of Berkeley disabled political movements and putting your name and current organization title to it, is itself a threatening and radical move. In other words people have jobs on grants and they are chicken shit. I suppose this is precisely the ultimate neoliberal tool of subversion that is applied over and over and never wears out. Divide, conquer, co-opt.
Chuck Grimes