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It was the attitude of people that I would get my Ph.D. and then go live in a nursing home.
I was the first of us here at {University of California} Berkeley
, in 1962. John Hessler came in a year later. By 1967, there were eight or ten of us. They
called us the Rolling Quads. Society's expectation of us --very low expectations --had
tremendous power over us. These helpers were so fearful that we would get out into the
world and die. We were very clear philosophically. We were beginning to talk about
disability issues as civil rights issues. We were involved in the civil rights movement,
the women's movement, anti-war, and the free speech movement. It was an exciting time.
So we were well trained.
We learned the theater of it. We learned how to play good cop/bad cop. Whenever we
needed somebody to stare somebody down it was John Hessler. He was six foot eight
inches; he had a huge wheelchair. We learned the power of our disabilities. It was all theater.
It worked with the government; it worked with the janitor. We had the usual extracurricular
activities: sex, drugs, rock and roll. When people saw us do that too, it changed the attitude.
People in other movements didn't always see that we were up against damaging stereotypes,
just the way they were. We were in their movements, but they weren't in ours. We had our
first battle with VR [Vocational Rehab]. Our first counselor was okay. He was the kind to
say to us, "What do you want? How can we make this happen?"
The second counselor, though, with her it was more like, "If you don't do this well, if you don't
carry this many credits, you're out of here." We had to live at the student health center. We
weren't "healthy" enough to live out on campus. This counselor, she was one of the reasons
we were fiercely independent. There was no way we were going to let her threaten us. We
were learning to be assertive. There were some of us had been locked up all their lives in
nursing homes and state homes. They were the very ones who were most threatened by
this counselor. She got a couple of them expelled from school. Everyone of us had tried to
work with her. At first we tried to negotiate. We bent over backwards, "Let's listen to what
she has to say." The bottom line was she had the power over our existence and she went
too far. We started with private negotiations. That didn't work. We went public with a press
conference. The newspaper reporters were wonderful You know the angle: these helpless
cripples who want to go to school and make something of themselves. They vilified the
Voc[ational Rehab] department. There were ten or eleven of us integrating the whole
university, the whole community. The reporters, the university, were inspired by it.
We were being threatened with expulsion not because we weren't doing well in school
but because we were disabled and loud about our civil rights. When she expelled our
people, we talked harder and longer to the newspapers.
A few weeks later they were reinstated. It showed us we could succeed. Like Saul Alinsky
says, "It's really important to win that first battle".
People expected us to fail. That didn't happen. They realized how powerful we were.
We stuck together, we worked together, we drew the line of what was unacceptable.
There were times when the word "no" was unacceptable. There was no question we
had control of the program. They had trouble finding another voc[vocational] counselor who
would take that job with us. None of the counselors wanted to be with us. We were known
as a feisty group of people who wouldn't give up their futures. We got the city to do the first
ever curb cut, on Telegraph Avenue. The city wanted to know why we needed curb cuts:
"We don't see you out there." You know, that Catch 22 thing they do.
So they put in the cut and old people liked it and then women pushing baby strollers liked
it and they put in more cuts and more of us were out there. We had this political clout with
the city. They had to listen to us in a more realistic way. We were strong integrationist's
and inclusionists. One of our philosophies was we would never do a government agency's
job. We didn't want to set up a segregated transportation system. Getting people places
was the transportation system's job. We had to hold them accountable. All things change
when you get political power. We found real power in disability. If you're going into
negotiations with somebody who feels sorry for you, use that to manipulate them.
But when you use that sick role all the time, it's toxic.
By 1968 --I was teaching then-- we had the National Guard on campus. We called them
the Blue Meanies. Reagan was Governor. We had them bombing us with tear gas.
The Blue Meanies rolled a tear gas bomb in my room. I was trying to keep the students
in the classroom, away from the fighting outside, and the Blue Meanies rolled one right in.
They knew me. They knew I was in there. They almost killed me with the CS gas. I had to
get right into the iron lung in a hurry. They had to rush me to the campus hospital.
Then there was CS gas dropping from helicopters on the hospital. Reporters really
nailed Reagan on that. The national guard general had to apologize. The director of
our hospital took Reagan on when Reagan denied it ever happened. People had
almost lost their lives and here was Reagan denying it ever happened. We just got
stronger and stronger as more people came in. More a part of the community.
People came from allover the U.S. to see how these severely disabled people were
going to school. The university found it a matter of prestige to back us. They began
to see that the future was in serving more disabled people.
What was to become the first Independent Living Center, that started on campus.
I worked with the federal government as a consultant in 1969. It was my first trip to
DC, my first plane trip, the first time the government had to pay for an attendant.
We had to go through a few bureaucrats to get that accomplished. They were saying,
"Why are two people coming when we only invited one?" They brought me in to work
on a special student services program for racial and ethnic minorities. As that bill
was going through the House, one guy threw in a clause that 10% of it had to go to
the disabled.
I helped write the guidelines for that. We set up a program that had to do with self-help,
with an attendant pool, with working with peers. Our job was to not to control their lives
but to help people take control over their own lives. It works fantastically. It empowers
people like crazy. John Hessler, the second student to come into Berkeley; he went to
France to study French. We got the county welfare to finance that. So he decided he
didn't really want to teach French and came back and put the proposal together for
the disabled student program. That document became the model on how to set up
an IL program.
Our disabled student program was so successful. We taught people how to use the
welfare system to survive and go to school. We got to know the welfare regulations
better than the welfare people who worked in those agencies. We knew all the
loopholes. We got a van. The director of the Disabled Students Program was a
quad and he could drive it. We kept pushing the department of rehab to buy those
kinds of things for people.
We made sure our people got the maximum amount of attendant care. When we found
it very difficult, we went to the state and got the regulations for it. It was totally political.
We began to be perceived as political animals. That changes the perception of you to
powerful. As you begin to get more and more empowered, you see yourself as powerful
too. Not only did we join all movements, we realized the only way to change things
was politics.
Always other people had spoken for us. We were speaking for ourselves. We had lots
of comments from legislators on how important it was to hear it directly from us. We had
a lot of credibility. We began to get involved in local elections, volunteering time to
help politicians. We recruited friends and attendants to do that work too. It gets you
known in politics to do all that.
We were the only people doing attendant services. This was during the Vietnam War.
There were a lot of Conscientious Objectors (C.O.) then, wonderful people.
I talked with the head of Selective Services, suggested he turn over those C.O.'s to us.
We explained it so he could get it: that it would be punishment for them, having to
scoop up our shit. We'd teach them responsibility that way. He gave us hundreds of
C.O.'s for attendants. They were great attendants who were loyal, who stuck with us.
That was the only bad thing about ending the Vietnam War -we lost our C.O.
attendant pool.
The University finally said we had to stop serving non-students. So we moved out
into the community with independent living services. It started in one room in 1972,
then in a two-bedroom apartment. It struggled a lot to just get going. I took over as
director. We began to raise some money. We knew we had something important
and it worked.
We were very clear that if we were going to be politically powerful, we had to
involve all people with disabilities, break down the barriers the charities had
created between us. An IL [(Independent Living Center)] had to be an IL for all
groups and all ages, not just for physical disabilities. This was clearly a political
decision. We weren't going to get anywhere nationally or internationally unless
we were together. The CIL immediately took off.
All of us who started CIL were on welfare. We made a conscious decision not to
go off it. We built the center on welfare. None of us could take a salary of more
than $300 and still get the welfare, so that's how we did it. I didn't go off welfare
until I became California Rehab Director in 1975. On Friday I was on welfare and
Director of the CIL. On Monday I was Rehab Director of the State of California.
In 1976 we started twenty more CIL's.
Whenever we start by believing people can't do it, we set up all these systems to
do it for them. Charities do that. IL is something else. IL is independent.
I was down in Dallas recently for a Partners in Policymaking [meeting]. There was
a guy there, a guy with muscular dystrophy who's spent half his life in a nursing home.
He came for this Partners training. He wants a life of his own.
So he and I and his attendant were going down this street, a nice, regular Dallas
street, and he says, "You know, it just occurred to me, I'm fifteen hundred miles
away from that f---king nursing home, and this feels great! This is living!"
You had to be there.
The text of this interview was discovered in The Ability Center archives, December 2002.
OUR MISSION:
To promote the Philosophy of independent Living,
to connect individuals to services,
and to create an accessible community, so that
people with disabilities can have control over their lives
and full access to the communities in which they live.
In 1978, a member of that original Berkeley group moved to Humboldt County and established
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