CODI: Cornucopia of Disability Information



The Americans With Disabilities Act has unlocked the door;
now it's time to open it

By Joseph P. Shapiro

The California breeze blew exceptionally warm that fall day in
1962 as Ed Roberts, a postpolio quadriplegic, was lifted out of
his wheelchair, carried up a mountain of steps, and situated in
Room 201 of Cal Hall at the University of California at Berkeley.
"It was a perfect day, a wonderful day, an exceptional day," says
Roberts."It was the first day of class, the first day of my
freedom, and the first day of my life as a self-sufficient
person." That same school semester James Meredith, escorted to
class by U.S. marshals, integrated the University of Mississippi.
"We both had to sue to get into school," notes Roberts. "The only
difference: I didn't need soldiers to protect me." But just as
surely as Meredith ushered in a new chapter of the civil rights
movement, Roberts was starting a civil rights movement of his own
-- one that would eventually remake the world for Americans with

Taking their cues from the civil rights movements of blacks,
women and other minorities, Roberts and fellow disability rights
leaders would challenge widely held myths that people with
disabilities were incapable of being educated, working, caring
for themselves, or becoming contributing members of society. They
would challenge the notion that they led tragic or lesser lives.
And they would proudly call themselves "disabled."

But it would take almost another 30 years, until 1990, before
this new self-identity was reflected in law with the passage of
the Americans With Disabilities Act, a far-reaching federal
statute that prohibits discrimination against 49 million

Birth of a movement

The disability rights movement, which won that law, began the day
Roberts -- who was so severely disabled that he spent most of his
day in an iron lung -- arrived on the Berkeley campus. He needed
someone, often his brother, who was also a student, to help him
get out of bed, dress, eat, and open his books. "Helpless Cripple
Attends UC Classes . . .," said one newspaper headline of the
Berkeley experiment.

But Roberts saw school as one place where he could compete. "I'm
paralyzed from the neck down, not from the neck up," he would
say. Still, because few people with disabilities even tried to go
to college, as Roberts points out, "there were very few role
models." So he became one. And within a few years a dozen other
students with severe disabilities, heartened by Roberts's
example, followed him to the Berkeley campus.

In the beginning Roberts himself wasn't sure a "crippled" man
belonged on a college campus like Berkeley. Limited opportunities
"did not seem like discrimination," he says, only something to be
expected. "We had such strong feelings of self-hatred and

On the Berkeley campus, however, Roberts watched as black
students and women students challenged similar assumptions about
their own assumed inferiority. "When women talked about being
objects, I understood," he recalls. When blacks and women talked
about the power of language, "underneath I got more and more
angry at the way people perceived me as a vegetable with no
future." Adds Roberts, "We were all talking about the same

The Rolling Quads, as the students with disabilities called
themselves, quickly found the campus full of barriers that seemed
to mock their every desire to succeed. So Roberts and his pals,
with the help of a small federal grant, started the Physically
Disabled Students' Program dedicated to solving any problem that
stood between the student with a disability and academic
achievement. That meant finding attendants to help them get to
class; scouting accessible apartments; even establishing a 24-
hour emergency wheelchair-repair service, since a broken
wheelchair sent back to a dealer could keep a student out of
class for weeks. "The most revolutionary part of the whole thing
was that we did it ourselves," says Roberts.

This seemingly simple program reflected a revolution in the way
people with disabilities were coming to see their lives. Rejected
was the poster-child or recipient-of-charity model that
perpetuated the treatment of people with disabilities as sick,
incapable and dependent. Doctors had up to that time measured
independence by how far one could lift a leg or walk after an
illness or accident. Roberts redefined independence as the
quality of one's life with accommodations, like attendant care or
a ramp. And he argued that people with disabilities knew better
than doctors or rehabilitation counselors what they could achieve
and what they needed.

In 1972 Roberts and his friends, who had by then begun to leave
school, took their student-program concept a step further and
started the Center for Independent Living. Its mission: to find
jobs, homes and other accommodations and services for graduates
with disabilities in the Bay Area. Today there are some 300 of
these centers around the country.

The nonprofit centers, which were among the first disability
programs to be run by people with disabilities themselves,
initiated a whole new generation of political activists. And the
laws and programs those activists fought for had at their core
the philosophy of accommodation Roberts had so valiantly set out
at Berkeley. He was, after all, a perfect example of that
philosophy: someone who, with help, far exceeded the expectations
others had for him. In fact, counselors for California's
Department of Rehabilitation had at first opposed helping Roberts
go to Berkeley, arguing it "infeasible" that he would ever be
able to work.

In 1975 Roberts became the head of that very same state agency.
"We should never define people's limits. Each of us has to define
our own limits," says Roberts, who constantly explores his own
outer edges. In the last few years, for example, the ventilator-
using quadriplegic has studied karate and gone swimming with
whales off the coast of Hawaii. "In the beginning it was, 'Why
me?' Now it's, 'Why not?' "

Accommodation, not pity

The ultimate expression of the independent-living philosophy is
the Americans With Disabilities Act. This sweeping piece of
legislation, most of which went into effect starting in 1992, not
only banned outright discrimination against people with
disabilities but also made providing accommodations, like ramps
and wheelchair-height desks in thework place, the law.

It was a worthy punctuation of the movement's insistence that
there is nothing tragic and pitiable in having a disability.
"Disability only becomes a tragedy for us when society fails to
provide the things we need to lead our lives -- job opportunities
or barrier-free buildings, for example," explains disability
rights leader Judith Heumann, who moved from New York City to
California in 1973 to work with Roberts after having to sue the
New York City Board of Education to gain the certification she
needed to work as an elementary-school speech pathologist. Today,
as a United States Assistant Secretary of Education, Heumann
oversees federal special education, rehabilitation, and
disability-research programs.

The power of the movement also came from the fact that people
with disabilities represent the one minority anyone can join at
any time. Fewer than 6 percent of Americans with disabilities
were born with their disabilities, which usually result from
accidents, diseases or complications of aging. "Disability knows
no socioeconomic boundaries," emphasizes Patrisha Wright, who led
the fight for the ADA as the Washington lobbyist for the
Disability Rights Education and Defense Fund, a legal group that
started at Berkeley's Center for Independent Living. "You can
become disabled from your mother's poor nutrition while she
carried you or from falling off your polo pony."

Former Representative and now chairman of the President's
Committee on Employment of People With Disabilities Tony Coelho,
who has epilepsy, also attributes passage of the ADA to the
"hidden armies" of people in positions of power who claim
personal experience with disability.

But it also took people banding together in groups like ADAPT
(then the acronym for American Disabled for Accessible Public
Transit, now for American Disabled for Attendant Programs Today).
Its members took a variety of direct actions, including blocking
inaccessible buses, to bring attention to the need for wheelchair
lifts, now a requirement. " Black people had to fight for the
right to ride in the front of the bus," notes Mark Johnson, an
ADAPT leader. "We fought for the right to get on."

The schools, as in other movements, were another key
battleground. In 1975 parents of youngsters with disabilities
brought lawsuits to win the first federal guarantee that their
children would go to school. Before then, a million children in
this country received no education -- almost every one a child
with a disability. Today there are approximately 5 million
special-education students.

All for one . . .

In fighting for the ADA, people of all disability types --
physical, sensory and mental -- came together in a mighty
coalition to argue that they have one thing in common: All face
discrimination and the low expectations of others. Sometimes
prejudice is crude, like that of the New Jersey private-zoo owner
who refused to admit children with Down's syndrome because, he
claimed, they upset his chimpanzees; or of the airline employee
who placed a 66-year-old double amputee on a baggage dolly rather
than help him into a wheelchair.

More often the bias is subtle, as in the most serious problem --
employment discrimination. According to a 1994 Louis Harris study
commissioned by The National Organization on Disability, two-
thirds of people with disabilities ages 16 through 64 are
unemployed. A full 79 percent of them say they want to work.
Arizona State University health economics professor William
Johnson, Ph.D., and East Carolina University assistant professor
of economics Marjorie Baldwin, Ph.D., found that even when people
with disabilities do hold jobs, they make less than other workers
and are less likely to be promoted. It's discrimination like this
that makes it necessary to keep the movement strong. Because, in
the end, gains made in the name of people with disabilities
benefit everyone. Changes in social policy have been similarly
influential. Attendant-care programs, for example have offered
new options for staying in one's own home instead of going to a
nursing home. For such changes Ed Roberts, who now runs a
disability think tank, claims the disability rights movement has
made some of "the most profound social changes ever seen."

Profound, yes. But what happens when Congress grants a new
minority group rights and society has little understanding of
those rights, why they were awarded, or even why they are needed?
As the newly recognized minority of people with disabilities
asserts those rights, there will be many breakthroughs for
equality. But there will also be clashes, misunderstandings, even
a backlash.

Because of their movement's successes, people with disabilities
are a protected class in civil rights legislation, empowered by
law as well as united against discrimination. Their mission now
is to convince a nation and the world that they and their fellows
want neither pity-ridden paternalism nor overblown admiration.
What they do want is common respect and the opportunity to build
bonds to their communities as fully accepted participants in
daily life.

     The author writes on social policy issues for U.S. News
     & World Report and The Washington Post. He received the
     Alicia Patterson Foundation Fellowship to study the
     disability rights movement, which is the subject of his
     book, No Pity: People With Disabilities Forging a New
     Civil Rights Movement (Times Books, 1993). He also
     writes for The Progressive, The Disability Rag &
     ReSource and many other publications.
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