Lobbyists
for state institutions
said,
"The
safety and constant monitoring provided
by an institution presents one care
option envisioned by the ADA."
--
from one of many amicus briefs in
support of Olmstead in
Olmstead v. L.C. and
E.W.
The
Olmstead petition argued that the
federal government cannot require
states to offer disability services in
the most integrated setting. Olmstead
lost that suit.
Winning
it meant, for all but a few of us, that
law-abiding disabled Americans have the
civil right to live in freedom with
home- and community-based supports --
if states will obey the law. Today 1.9
million of us are imprisoned by states
in long-term "care" facilities for the
crime of having a disability. Millions
more of us live under threat of losing
our liberty -- for our own good.
We
could consider the Olmstead decision a
happy ending. But states will not obey
that ruling willingly. We have not yet
won our freedom.
|
Mouth
believes
Safety
is Dangerous
The two
articles below appeared in Mouth magazine
#53, May 1999.
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"Surveys
conducted in the nation's 17,000-plus
nursing homes in recent years showed that
each year, more than one-fourth of the
homes had deficiencies that caused actual
harm to residents or placed them at risk
of death or serious
injury."
--
General Accounting Office, "Nursing
Homes," March 1999
Young
people with quadriplegia (paralysis in
four limbs) will live 15 months, on
average, in congregate settings. When
living in their own homes, with support,
they will live for 20 years or
longer.
--
World Institute on
Disability
"Those
of us who require assistance with our
personal daily needs are expected to give
up control over our lives in
exchange.
"Large
numbers of Americans, as we age, will need
assistance with things like dressing,
bathing, using the bathroom. Why do we
continue to accept that nursing homes must
be endured as a solution?"
--
Mary Johnson, editor,
The Ragged Edge
"Now
there's seventy crips in seventy rooms,
all locked up for writing songs about
freedom..."
--
Ian Stanton in "The Incredible
Shrinking Man"
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A
Learning Experience
by
Nancy Weiss
In
an attempt to control the behavior
of a
14-year-old
boy
who was
diagnosed with autism and mental
retardation, a teacher at Fairview
Developmental Center in Huntington
Beach, California, killed him by
rolling him inside an exercise mat.
She
was arrested. Testimony shows she had
tied a diaper across the boy's face to
block his vision before rolling him in
the mat. Then she sat on the mat,
holding the student in place until he
stopped kicking. When she unrolled the
mat, the student did not get up. He
appeared limp. He died after being
transported to a hospital.
The
teacher's attorney argued that some
might consider the teacher's behavior
improper, but that "a classroom full of
autistics is a different world."
"Those
people," he said, "are socially
undesirable.... What teachers have to
do may seem strange and distasteful."
Even so, he said, it was
necessary.
The
judge dismissed charges against the
teacher, saying there was no doubt she
had caused the boy's death but that her
actions were "between her and her
conscience and not something for a
court of law."
The
Hartford Courant noted that the
California story is not unusual because
the teacher went unpunished. What was
unusual was her arrest. In the majority
of cases, staff involved were not
arrested. In many cases not even an
internal investigation was held.
A
medical examiner, asked to comment on
another case, said that he could not
yet give a cause of death because the
case was still under investigation. "I
can tell you this, though," he said.
"This was a problem kid."
The
most vulnerable people with the most
severe disabilities are the most likely
to be placed in "homes" where they can
be controlled. The more they dislike
this control, the more likely they are
to protest. The more demonstrative
their protest, the more their behavior
will be viewed as evidence for
continued institutionalization. And the
less likely that their protests will be
heard.
The
full series of articles from The
Hartford Courant is available on
the web at www.courant.com. But just as
the names on the Vietnam Memorial only
hint at the suffering endured, these
names, dates, and one-line explanations
tell as little:
A
person killed because he refused to
go to the library, another because
he ran across a play yard, another
when he was not allowed to use the
bathroom, another because she
wouldn't go to a day program.
All were living
in their "homes."
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"Standards
remain lax and reforms fall short because
of the very nature of nursing homes.
Facilities that care for nearly 2 million
elderly and disabled residents form a
lucrative private industry that profits
directly from pain -- while taxpayers foot
the bill.
"Nursing
homes ring up $87 billion of business each
year, and more than 75 cents of every
dollar comes from public
funds.
"With
the number of elderly Americans requiring
long-term care projected to reach 14
million by the year 2020, the [nursing
home] industry is virtually guaranteed
a profitable future.
--
The Nation
March 29, 1999
"The
industry gives millions in contributions
to state and federal officials, insuring
weak public oversight....
"...
the industry knows how to use its
political and financial clout to block any
meaningful reform."
--
The Nation
March 29, 1999
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When
Safety is Dangerous
by
Lucy Gwin
When
you herd
those
people
into one place and keep them
segregated, they become, in isolation,
more vulnerable and less capable of
defending themselves. Both history and
today's headlines prove as much.
Even
so, banishing the imperfect is often
done in the name of their safety. The
practice is known in the disability
industry as "serving consumers in a
congregate setting."
Predators,
the true consumers at this
fish-in-a-barrel feeding ground, will
come. No amount of policing will drive
them away or put a halt to their
perfectly natural activity.
No,
not all employees in congregate
settings are predators. Do-gooders are
as likely to flock to nursing homes,
state and county hospitals, and
developmental centers. They mean well,
but you probably wouldn't want them
doing their variety of good at your
house, making the rules you must live
by, judging your behavior, insisting
upon your compliance with a regimen
they impose. Seen below, a photo of
exactly that process:
The
majority of workers in congregate
settings are simply overworked,
poorly-paid, average Americans. Please
note, however, that their status in the
workplace and the world derives from
the fact that they are not those
people.
We
are those people and we'd rather
go to jail than live anywhere but at
home.
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Nancy
Weiss is Executive Director of TASH, a
national disability rights organization
whose members assisted the Hartford
Courant in its investigation of deaths in
certain congregate settings. She can be
reached at info@ tash.org.
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The
illustration of the man in restraints
is by B. Faw and first appeared
in Mouth magazine in
1991.
|
Lucy
Gwin is editor of Mouth
magazine. She escaped from a nursing home
where she was serving a life sentence for
the crime of getting hit by a drunk
driver. You can email her by
clicking
here.
|
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But
won't it cost too much money to let those
people run around loose?
Maybe
you have a different worry altogether.
Like, What if people with some
disabilities are dangerous TO the
community. Check that out with Don Weitz,
who did his homework.
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Take
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Today,
some genuine American patriots are at
work, changing the system that wrongfully
imprisons so many. They call themselves
Freedom Clearinghouse, and you can learn
more about them right now.
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