ABLEnews Extra

              From "Why Me?" to "Why Not!"

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THE NEW CIVIL RIGHTS

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
disabilities.

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 Americans.

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 inadequacy."

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 issues."

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.

[with a tip of our ABLEnews' hat to Ed Girard on ADA-LAW]

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