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SAYS
are Mouth's interviews with leaders and front-line advocates in
the disability rights movement who say what they think, right out
loud. We print them here in full. They're listed in no particular
order. Click on the name of the someone you want to hear from. We
guarantee they'll have something to say that's worth a listen.
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Dee
SAYS - Dee
Lesneski, the "Flagpole Lady" took on the school district
of Washington County, Pennsylvania. Despite many court orders
her son's school had refused to provided the services of a sign
language interpreter or allow her son Max control of his own asthma
medications. The result, a life-threatening asthma attack which
no present school employee was intelligent enough to recognize.
Dee chained herself to the flagpole in the school's parking lot
until the school reluctantly agreed to abide by the court orders.
"Thank God
I didn't tie myself to the dumpster. They could have arrested
me. I would have been trespassing. The flagpole made it freedom
of speech."
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Nat
SAYS - Nat
Hentoff is columnist and staff writer for the Village Voice, and
also writes a column for the United Media News Syndicate which
may appear in your local paper. He is considered an expert on
freedom of speech.
"The way to
get people to think is to catch them unawares."
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Marca
SAYS - Marca
Bristo is director of the Access Living independent living center
in Chicago and chair of the National Council on Disability. That
Council, under her leadership, released a report in July, 2000,
on the enforcement of disability rights laws.
"If there's
no consequence for violating the law, people will go on violating
it."
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CANDACE
SAYS - Candace
Hawkins is a recovering bureaucrat who once oversaw ADA implementation
in her state, Missouri. Today she is the national organizer for
Freedom Clearinghouse. She helped organize the successful implementation
of the Supreme Court's Olmstead decision in Missouri, the first
state to have put that decision into its own law.
"The money
must now follow the person being served to the place where they
choose to be served. It's a huge change."
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VELVETA
SAYS - Velveta
Golightly-Howell is acting regional manager of the Region VIII
U.S. Department of Health & Human Services Office of Civil
Rights. (We call it OCR for short.) She is actively involved in
implementing the Supreme Court's Olmstead decision where the Court
ruled that 'placing' people with disabilities in nursing homes
and institutions makes a public assumption that they "are incapable
or unworthy of participating in community life." The Court called
that discrimination.
"The OCR believes
in civil rights. The ADA is a civil rights law."
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VICKI
SAYS - Vicki
Wieselthier is the founder of MadNation, an advocate who puts the
pedal to the medal, pushing all of us ahead.
"If it isn't
voluntary, it isn't treatment. Treatment is like sex. It has to
be consensual."
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AJ
SAYS - Alene
Jensen is a true blue radical, working on the front lines of human
services to make them respond to real people.
"I don't have
a visible disability, and I'm living on my own. But the minute
I would need help, then people will come in and start saying,
'She's not making good choices.'"
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STEVE
SAYS - Steve
Gold is an attorney who knows the Americans with Disabilities Act
(ADA) inside and out, and uses it, brilliantly.
"Just starting
right at the top [in the findings of the ADA] Congress
says, 'Historically, society has tended to isolate and segregate
individuals with disabilities, and despite some improvements,
such forms of discrimination against individuals with disabilities
continue to be a serious and pervasive social problem.' Those
findings should be used as a trumpet, a clarion."
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JUDY
SAYS - Judith Gran
is another Philadelphia attorney who has devoted her working life
to freeing people with disabilities from institutions. And she wins.
"The movement
to close institutions, to assert the rights of people with disabilities
to live in their homes and communities, has been the most successful
civil rights movement in our country. This is the cutting edge
of civil rights work."
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JOHN
SAYS - Professor John
McKnight of Northwestern University is famous for his research on
poverty where he discovered that, after all the programs our government
has designed and implemented, the trouble with poor people is that
they still don't have money. In this brief interview, he talks about
the disability system and its "consumers."
"The money
doesn't go to the people who are pitied. It's a bait and switch
tactic. People who are labeled are the bait. The switch is that
the money goes to pay professionals."
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MAJOR
SAYS - Representative
Major Owen, one of the sponsors of the ADA, says something you'll
want to hear about hostility among the haves for the have-nots.
"What is our
greatest enemy? Segregation. Segregation and the attitude that
fosters segregation."
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MO
SAYS - Mike Oxford
is director of TILRC, the Topeka Independent Living Resource Center,
and VP of the National Council on Independent Living, and a national
organizer with Adapt as well. We interviewed him right after he
got a big national award from the Health Care Financing Administration
when last time we saw him at HCFA, he was part of the Adapt action
that shut them down. What happened?
"We did what
we promised. We freed our people."
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DOHN
SAYS - Dohn Hoyle
directs the Washtenaw Association for Community Advocacy, formerly
an Arc, in Ann Arbor, Michigan. He's also been on the team to close
every DD institution in the state of Michigan. And the last one
will shut down any minute now.
"With guardianship...
it's not like you're just a few rights short of full citizenship.
Somebody else controls your life, as if you're a child. But they
do things with you that we wouldn't do to kids."
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