graphic of Who Says


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.



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."

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."


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."



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."


photo of Candace Hawkins



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."

photo of Velveta Howell

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."

photo of Vicki Wieselthier

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.'"

photo of Alene Jensen under arrest at a disability rights protest

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."

photo of attorney Steve Gold at a microphone

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."

photo of Judith Gran in her law library

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."

portrait of Professor John McKnight

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."

official congressional photo of Representative Major Owen

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."

photo of Mike Oxford in an Adapt "Free Our People" t-shirt, speaking into a mike

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."

photo of Dohn Hoyle, speaking

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