International Disability Rights News Service
Your quick, once-a-day look at disability rights, self-determination
and the movement toward full community inclusion around the world.

Monday, July 20, 2004
Year V, Edition 974

Today's front section features 8 news and information items, each preceded by a number (#) symbol.
Click on the "Below the Fold" link at the bottom of this section for 37 more news items.

"To everyone out there in Seattle today I want you to know, that from womb to tomb, you have a place in the community."

--Joelle Brouner, an organizer with the state of Washington's recently-formed Evergreen ADAPT, talking to a crowd of disability rights activists during the National Governors Association meeting (First story)

"We don't need to be cured. We don't need to be fixed. We are whole human beings just the way we are."
--Sarah Triano, co-organizer of the First International Disability Pride Parade, which took place Sunday in Chicago (Third story)



Urged By Protests, Governors Agree To Consider Community Resolution

By Dave Reynolds, Inclusion Daily Express
July 20, 2004

SEATTLE, WASHINGTON--Disability rights activists who want states to spend more of their Medicaid long-term care dollars on community-based and in-home supports scored a victory this weekend, getting one governor's promise to bring the issue to the governors of all states.

The group of about 500 protesters from the nation-wide advocacy group ADAPT were in Seattle to draw public attention to the institutional bias in Medicaid, and to get members of the National Governors Association to endorse a resolution calling for Medicaid reform and support of legislation promoting community-based services.

The NGA was meeting at downtown Seattle's Westin Hotel to develop their 2005 congressional agenda, focusing specifically on issues -- including long-term health care -- related to the estimated 77 million Americans set to retire over the next decade.

Medicaid, a program that provides medical and health-care benefits to millions of people with low-incomes, is funded by both federal and state dollars. Governors can influence to a certain degree how that money is to be spent.

On Sunday, ADAPT members, many in wheelchairs, shut down traffic on the streets near the hotel to force a meeting with the governors to get their support. Five hours later, Pennsylvania Governor Edward Rendell came out to speak to the crowd. Rendell agreed to introduce ADAPT's long-term care resolution to the NGA membership at its next meeting in February.

Other governors, including those from Mississippi, Kansas, and Montana, expressed interest in supporting the resolution, or at least learning more about it.

When asked about the effect the protesters had on him and other governors, Washington Governor Gary Locke replied, "We're aware of their issues. I'm proud that the state of Washington very much embraces (their issues) with the Olmstead decision, and giving seniors a choice so that not everybody goes into a nursing home. The disabled should not have to be institutionalized."

The Olmstead decision refers to a 1999 U.S. Supreme Court ruling which found that states violate the rights of people with disabilities when they "unnecessarily" institutionalize them. The states have moved at varied paces to implement changes needed to comply with the decision.

The activists also want the governors to support MiCASSA, the Medicaid Community Attendant Services and Supports Act. The measure, which has been held up in the U.S. Congress since it was first introduced in 1997, would allow long-term care recipients to use their Medicaid funds for community-based and in-home supports if they choose. Currently, 75 percent of Medicaid long-term care funds go toward nursing homes and other institutions. Although the NGA has supported many of the concepts behind MiCASSA, the governors have not yet endorsed the legislation.

During a Monday press conference, organizers announced a list of the twenty worst states in providing alternatives to nursing homes. Using three sources of public data, ADAPT named the five worst as Mississippi, Nevada, Louisiana, Tennessee, and Illinois.

"The governors of America should hang their heads in shame," said Stephanie Thomas an ADAPT organizer from Texas.

"When I was born, my family was urged to give me up; to put me in Fircrest," said Joelle Brouner, an organizer of Washington's newly-formed Evergreen ADAPT. "I am a living example, for the past thirty years I have enjoyed living in the community. To everyone out there in Seattle today I want you to know, that from womb to tomb, you have a place in the community."

The disability rights activists may also have won the media battle during the weekend. Local and regional television stations featured stories on the ADAPT protests, as did national radio news, local and national newspapers and wire services.

"Protesters for disabled block streets" (Seattle Times)
"Governors ponder how states can help aging Americans" (Associated Press via USA Today)
ADAPT Action Seattle July 17 - 21 (Free Our People)
"Home and Community Service Options Report on the Ten Worst States" (ADAPT)
[PDF format requires free Adobe Acrobat Reader]
Evergreen ADAPT



Community Advocates Respond To Efforts To Keep Fernald Open

By Dave Reynolds, Inclusion Daily Express
July 20, 2004

BOSTON, MASSACHUSETTS--Advocates for community services, including former residents of Fernald Developmental Center, gathered at the State House Friday to call again for the closure of the 156-year-old facility and the other state-run institutions that house people with mental retardation.

"We need closure. We need that school to be closed," said Joan Souza, who lived at Fernald from the 1950s to 1970s.

"I don't miss it. I'll tell you that," said Ruth George, 58, who left Fernald 31 years ago.

Friday's press conference was organized in response to a legal maneuver earlier in the week by parents of Fernald residents, who have been battling Governor Mitt Romney's plan to close the aging institution. Romney announced in February of last year that the institution would shut down by October 2004 and its then 302 residents moved to other state-run facilities or into homes in the community. The governor hinted that closing Fernald was the first step in his plan to de-institutionalize the Commonwealth of Massachusetts.

Efforts by parents of Fernald residents and local leaders have effectively slowed the process so that only a few dozen have been moved -- mostly transferred to other facilities.

On Wednesday, attorney Beryl Cohen, who represents the interests of parents of Fernald residents, filed a legal brief calling on U.S. District Court Judge Joseph Tauro to reopen a class-action suit that parents had filed against the state in 1972. That suit charged that the institutions were understaffed, that staff were not properly trained, and that conditions were inhumane. The case ended in 1993 with an federal court order requiring the state to provide residents with "equal or better facilities" in the "least restrictive, most normal, appropriate residential environment."

Cohen argued that the state's recent decision to close large institutions, and move the residents to smaller, community-based settings, has jeopardized the health and safety of those still inside.

A coalition of more than 80 disability-related organizations have joined The Arc of Massachusetts in its efforts to force an end to large institutions, which they consider and out-dated form of segregation. Their gathering Friday at the State House was intended to show support for Romney's plan.

"We think it essential for Governor Mitt Romney to stick to his guns for full closure and invest in the communities," said Leo Sarkissian, executive director of The Arc of Massachusetts. "Statistics show it's eventually going to close. We need to reinvest in the community."

The state currently spends $160,000 annually on each resident at Fernald, providing three staff members for every resident. Community advocates say this money would go a lot further, and would provide a level of independence, freedom and individualized service that institutions simply are not equipped to provide.

"There's no need to segregate individuals," said Sarkissian. "It's a matter of civil rights."

Monday's Daily News Tribune featured a story about Ruth George, who told of being raped twice, along with suffering other indignities, while a resident of Fernald.

"I don't want to go back there," she screamed, when asked about the facility. "I don't want to go back there."

"Closed-minded" (Daily News Tribune)
"A State Girl's survival story" (Daily News Tribune)
"The Transition to a Community Service System should not be impeded" (The Arc of Massachusetts)
"Fernald Developmental Center -- Oldest Institution In the Americas" (Inclusion Daily Express Archives)



More Turn Out Than Expected At First Disability Pride Parade

By Dave Reynolds, Inclusion Daily Express
July 20, 2004

CHICAGO, ILLINOIS--The organizers of Sunday's First International Disability Pride Parade had expected about 500 people with disabilities to show up to participate.

They were wrong.

An estimated 650 people from 60 different disability groups rolled, walked or rode down Chicago's Solidarity Drive to show that having a disability is nothing to be ashamed of.

"We're trying to unite all people with all different kinds of disabilities to send a message that disability is a natural and beautiful part of human diversity," parade co-organizer Sarah Triano told the Chicago Sun-Times.

"We don't need to be cured," she said. "We don't need to be fixed. We are whole human beings just the way we are."

The hour-long parade was followed by a rally at Soldier Field Green.

In organizing the parade, Triano partnered with The Nth Degree's Dan Wilkins, and brought seed money from part of a $10,000 prize from the 2002 American Association of People With Disabilities Paul G. Hearne Leadership Award.

"These are young people who are passionate about owning the fact that they have a disability," explained Andrew Imparato, president of AAPD. "I'm hoping this is the beginning of a natural phenomenon where Chicago is the anchor."

Triano and other event organizers worked with the Mayor's Office for People with Disabilities for what they hope will become an annual event.

Disabled And Proud



"The Shackles Of Mental Disability"

July 20, 2004

JOHANNESBURG, SOUTH AFRICA--A recent edition of Independent Online featured a look at treatment of people deemed to have mental disabilities in South Africa.

According to the article, an emphasis on AIDS, malaria and tuberculosis programs, has left little funding for government programs and non-profit agencies to serve the more than five million South Africans with mental disabilities.

That has left a treatment gap that a number of alternatives have tried to fill. People with mental disabilities are being forced by their families into settings in which they are confined to tiny living quarters, chained or shackled for hours on end, and provided little or no medication to deal with mental illnesses.

Some of these "treatments" include forms of torture, such as forcing a person to vomit "demons" by drinking large amounts of "holy water".

While these acts have been condemned by international human rights organizations, mental health officials say it will take a monumental change in laws, community education and funding to improve the situation for people with mental disabilities.

"We're nowhere near the equal rights written into our constitution -- due to ignorance," said Ruth Rensburg, who is with Central Gauteng Mental Health. "The reduction of beds in psychiatric hospitals and a proclaimed government move towards rehabilitation won't improve the situation as long as communities lack structures to embrace people with mental disorders."

"The shackles of mental disability" (Independent Online)



Camp Unites Children With And Without Disabilities

July 20, 2004

WASHINGTON, DC--The following three paragraphs are excerpts from a story in Saturday's Washington Post:

There are about 100 accredited summer camps in the Washington region, according to the American Camping Association, including several designed for children with special needs, including diabetes, autism and spina bifida. But fewer than a dozen are listed as focusing on children with and without disabilities going to camp together.

Kamp A-Kom-Plish was founded on 108 acres in the Charles County community of Nanjemoy about seven years ago by Melwood, a nonprofit group that works with people with disabilities. The camp enrolls about 40 children between ages 8 and 16, most from the Washington area, for one- or two-week sessions throughout the summer.

About half of the children do not have a disability. Some campers have physical disabilities, while others face mental or emotional challenges. Everyone joins in regular camp activities: boating, soccer, swimming, traversing ropes courses, scaling a climbing wall.

Entire article:
"Camp What's-in-Common" (Washington Post -- free registration required)



Barrier Breakers: Breaking the Barriers of Poverty, Discrimination, and Bureaucracy

Barrier Breakers has served the Disability Rights Movement since 1990, selling posters and manuals about disability issues.

Barrier Breakers is committed not only to excellence in its products and services, but also to disability rights, to freeing our people from nursing homes and institutions, and to removing barriers to work for people with disabilities.


# EXTRA!!! From the IDE Archives -- Three years ago:

Jerry Lewis' Words Show Contempt For Opponents
By Dave Reynolds, Inclusion Daily Express
July 18, 2001

TORONTO, ONTARIO--Some folks are not happy with Jerry Lewis.

In fact, a lot of people with disabilities -- the very people he says he works tirelessly for during the Muscular Dystrophy Association (MDA) Telethon every Labor Day weekend -- have been fighting mad at him for years.

You might ask why on earth these people would be angry? After all, Lewis' involvement with MDA has raised millions upon millions of dollars for services, equipment, and above all, research into a cure.

Well, for several reasons.

One has been his way of portraying people with disabilities as deserving of pity, even calling them "half persons", in order to get donors to open their pocket books. Another has been his relentless focus on "curing" a disability rather than helping people to accept a disability as part of the human condition. Still another has been his refusal to take seriously the opinions and feelings of those who feel hurt by his actions and those who believe he has single-handedly undone much of what disability rights advocates have been working toward for decades.

In the past, Lewis has pretty much tried to brush off his opponents. And officials with MDA have pretty much let Lewis be, well, Lewis.

But two months ago, the comic-actor-turned-fund-raiser just may have opened his mouth and inserted both feet one time too many.

During the May 20 television news magazine CBS Sunday Morning, Lewis was asked about those people who have turned out to demonstrate against the telethon for the last several years.

Here is what Lewis said:
"I'm telling people about a child in trouble. If it's pity, we'll get some money. I'm just giving you facts. Pity? You don't want to be pitied because you're a cripple in a wheelchair? Stay in your house!"

If the comic was trying to be funny, few were laughing. Not MDA officials who had defended him for so long. Not disability rights advocates.

Some say these are fighting words.

"With these words, actor Jerry Lewis laid bare his contempt for people with disabilities who object to the pathos-pushing tactics he uses to raise funds," wrote Laura Hershey, a former MDA Poster Child turned protester, in an article for on-line news magazine.

Related resources:
"The Nutty Profess-ion" by Laura Hershey (
"Jerry Lewis Vs. Disability Rights Activists" (


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