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

Wednesday, October 29, 2003
Year IV, Edition 167

This front page features 8 news and information items, each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for 40 more news items.

"Obviously, we want to know how all those commenting in this case feel about the lives of people with Down's syndrome, autism, Alzheimer's and other disabilities. Are they next for death through starvation? It's not so farfetched."

--Stephen Drake, research analyst with the disability rights group Not Dead Yet, commenting on the media's coverage of Terri Schiavo's situation (First story)

"Disabled people are more and more gradually owning the idea that being disabled is a culture and an identity base that has a humour, a whole culture behind it."
--Philip Patston, 'sit-down' comedian and advocate from New Zealand (Fifth story)



Michael Schiavo And ACLU Fight To Overturn "Terri's Law"

By Dave Reynolds, Inclusion Daily Express
October 29, 2003

TAMPA, FLORIDA--Attorneys for Michael Schiavo and the American Civil Liberties Union asked Pinellas County Circuit Court Wednesday to declare unconstitutional a law passed last week which spared the life of Terri Schiavo.

In their 52-page brief, the attorneys claimed that the Legislature improperly gave Governor Jeb Bush the authority to override court decisions on October 21 when it passed HB 35-E, known as "Terri's Law". Bush signed the measure into law the same day and ordered a feeding tube to be reinstalled into Terri's stomach six days after it had been removed by court order.

Attorneys George Felos and Randall C. Marshall wrote that the law violated Florida's constitutional right to privacy and illegally intruded on the courts' authority. They said the law set a precedent allowing politicians to override the courts any time they made an unpopular decision.

Governor Bush's lawyers are expected to file their response in court on November 5. His brother, President George W. Bush, said on Tuesday, "I believe my brother made the right decision."

Terri collapsed in February 1990 and her brain was without oxygen for several minutes. The courts have accepted doctors' testimony that Terri has since been in a "persistent vegetative state", where she cannot feel anything and from which she cannot recover. They have also accepted Mr. Schiavo's claims that his wife had told him she would not want to be kept alive "by artificial means". Her gastronomy tube was removed on October 15 by order of Pinellas County Circuit Court Judge George Greer.

Terri's parents, Bob and Mary Schindler, claim that Terri is responsive and alert, and that she would improve if Mr. Schiavo would allow her to undergo rehabilitative therapies. Some experts have said that Terri could learn to swallow, thereby making the feeding tube unnecessary.

The governor pushed the Legislature to pass the bill during a special session. His office had received tens of thousands of messages from disability rights groups and right-to-life advocates.

Many disability rights leaders are frustrated that -- with the exception of a few opinion pieces -- the media has focused on Terri's case as a "right to die" issue.

"Thousands of people with disabilities across the United States are watching the case anxiously," wrote Stephen Drake in the Los Angeles Times.

"Obviously, we want to know how all those commenting in this case feel about the lives of people with Down's syndrome, autism, Alzheimer's and other disabilities," wrote Drake, who is a research analyst for the grassroots disability rights group Not Dead Yet.

"Are they next for death through starvation? It's not so farfetched."

In an interview with National Public Radio, Rus Cooper-Dowda explained that she once was declared to be in a "persistent vegetative state". During that time she was able to hear and understand what was being said around her. Her attempts to communicate were ignored or misunderstood.

"If I could talk to Michael Schiavo, I would say that I have been Terri and that she is communicating," she said. "The only way that you can believe that she is not communicating is if you refuse to see it. And that was my situation and I came terribly close to where Terri has been."

"Disabled Are Fearful: Who Will Be Next?" by Stephen Drake (Los Angeles Times -- free registration required)
"Recovering from a 'Persistent Vegetative State'" Interview with Russ Cooper-Dowda (National Public Radio)
"The Terri Schindler Schiavo Crippled Kickball Team" by Maryfrances Platt (Ragged Edge Magazine)
"The real meaning of the term 'brain dead'; Schiavo case does not qualify" (Montreal Gazette)
"Some vegetative patients may have awareness" (Associated Press via Florida Sun-Sentinel)
"Honour all of life all of the time" (Western Catholic Reporter)
"An Execution In Florida -- Terri Schiavo On Death Row" (Toogood Reports)
Extended coverage: "Terri Schiavo's Right To Live" (Inclusion Daily Express)



Task Force To Address Crimes Against Seniors And Adults With Disabilities

October 29, 2003

TOPEKA, KANSAS--The Kansas Advocacy And Protective Services, Elder Law Clinic at Kansas University, AARP and several county departments have joined forces with the state's Vulnerable Adults Task Force to address the problems of abuse and exploitation of adults with disabilities and seniors.

According to the Lawrence Journal-World, the task force has received more than 400 complaints of abuse and fraud since it was formed in March.

Assistant Attorney General Stacy Jeffress said, that in addition to prosecuting crimes and filing lawsuits, the task force will educate the public and businesses on warning signs of abuse.

"We want to help others become eyes and ears of the community," Jeffress said.

Possible indicators of financial abuse include unusual bank withdrawals, failure to buy groceries or medicine, failure to pay bills, writing numerous checks to telemarketers, and buying unnecessary products or home repairs.

Related article:
"Task force targets elder abuse" (Lawrence Journal-World)



Boy Learns Importance Of Giving

October 29, 2003

EAST GREENBUSH, NEW YORK--The following three paragraphs are excerpts from a brief story in Wednesday's Albany Times Union, about a boy with Down syndrome who is giving back to his community:

Gage Hillebrandt presses his palm against the mouths of his mother, Dorothy Desautels, and his aunt, Mary Hillebrandt, when they attempt to answer a question for him.

No one will speak for me, the independent-minded 8-year-old seems to say as he cracks a broad smile and shakes his light blond bangs from his eyes.

"I'm too big," he proudly explains as he talks about his decision to donate two bikes, and a bed, from his home to charity.

Entire article:
"Starting out on a cycle of giving" (Times Union)



Week In Wheelchair Opened Eyes Of Transit Manager To Access Problems

By Dave Reynolds, Inclusion Daily Express
October 29, 2003

LUBBOCK, TEXAS--After a week commuting in a motorized wheelchair, John Wilson said he was pleased with the city's buses and drivers, but found the sidewalks and conditions at bus stops frustrating and dangerous.

Wilson, who is the general manager of the public transit service Citibus, accepted a challenge by Lubbock resident Allen Bryant to experience life -- and transportation -- for one week as a wheelchair user. According to the Lubbock Avalanche-Journal, Wilson used standard bus routes as well as CitiAccess, the on-demand accessible van service.

While Wilson praised Citibus and CitiAccess Tuesday, he was unhappy with the lack of curb cuts on city streets.

"There are no curb ramps for wheelchairs in my neighborhood," said Wilson, who explained he often had to wheel into yards and onto the street during his 11-block commute. "Driveway entrances created curbs which could turn a wheelchair over."

Wilson said he also experienced problems when his wheelchair was unloaded on soft soil. The wheels sank into the dirt, so he had to be loaded back onto the bus and taken to a grassy area to be unloaded again.

Wilson said the transit service will train drivers to recognize areas that are safest to unload wheelchairs.

He suggested commuters with wheelchairs call the city engineer's office to report dangerous sidewalks.



Disability Is A Social Issue, Not A Medical Issue, Advocate-Comic Explains

October 29, 2003

DARLINGHURST, AUSTRALIA--When I read the following story I couldn't help but wonder, if you use a wheelchair throughout your comedy routine, does that make you a 'sit-down' comic or are you still a 'stand-up' comic?

The Sydney Star Observer wrote about Philip Patston, a New Zealand comedian who this week addressed a "Diversity in Health" conference in Sydney.

Patston, who has cerebral palsy, explained to the crowd that disability needs to be looked at as a social issue, not a medical issue.

"The medical profession kind of 'own' the whole area of impairment and disability and they definitely try and make people less disabled and to 'cure' people and to change people," Patston said. "Disabled people are more and more gradually owning the idea that being disabled is a culture and an identity base that has a humour, a whole culture behind it."

Patston manages Diversity Works, a company that, according to its Web site, provides consulting, training, motivational coaching and speaking services, graphic design, website management and award-winning comedy.

"Diversity Matters" (Sydney Star Observer)
Diversity New Zealand Limited



Concrete Changes

An international effort to make all homes Visitable!

(1) A focus on homes, not government buildings, restaurants, etc...(important as they are)
(2) ALL homes-- not just "special" homes; being at the party, the meeting, the reunion--not isolation.
(3) Narrowing the emphasis from a long list of possible or desirable access features to the most essential features: entering a home and fitting through the interior doors. So that widespread construction change is more likely to happen quickly.

People who use wheelchairs or walkers, or are impaired by stiffness, weakness or balance problems are blocked by steps at every entrance of a home. Wheelchair users are stopped by inches from fitting through the bathroom door in a friend or relative’s home.


# EXPRESS EXTRA!!! From the Inclusion Daily Express Archives -- One year ago:


Flag Pole Parents -- The Sequel

By Dave Reynolds, Inclusion Daily Express
October 29, 2002

CHEAT LAKE, WEST VIRGINIA--Debi and Jason Lewis want their 9-year-old son, Tucker, to attend his local school, Cheat Lake Elementary School, so he can be with his friends and the other children in his neighborhood.

But Monongalia County Schools says Tucker must attend Mountainview Elementary School because the one at Cheat Lake does not have the facilities, staff or equipment to educate the boy who has cerebral palsy and mental retardation. Providing what is needed for Tucker at Cheat Lake would be too expensive, district officials say. Besides, six other students with similar disabilities are already being served at Mountainview, they add.

Tucker's parents have filed a complaint against the district and are schooling him at home until the district changes its position -- or is ordered to change its position.

On Monday, October 21, advocates from West Virginia ADAPT began helping the family, staging a demonstration by chaining themselves -- some in wheelchairs -- to the school's flagpole.

"My Name is Tucker"

Dominion Post coverage
Oct. 22: Unflagging Support
Oct. 23: Protesters Continue Flagpole Vigil at Cheat School
Oct. 24: Cheat Protesters Still Chained to Flagpole
Oct. 25: Cheat Lake Mom Debates Flagpole Protesters
Oct. 26: Protesters Vow: We're Not Going to be Run Out
Oct. 28: Protesters Continue Vigil at Teach
Oct. 29: Parents go to court over boy's school

The demonstration is similar to that staged for three weeks in 2000 by Deanna Lesneski, just across the state line in Washington County, Pennsylvania. Known by disability rights advocates as the "Flag Pole Mom", Lesneski strapped herself and her lawn chair to the flag pole in front of Blain-Buffalo Elementary School after school officials failed to provide what they had agreed her son, Max, needed.

"Flag Pole Mom' Protests For Weeks To Get Appropriate Education For Son" (Inclusion Daily Express)


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