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.

Thursday, March 25, 2004
Year V, Edition 899

Today's front page features 7 news and information items, each preceded by a number (#) symbol.
Click on the"Below the Fold" link at the bottom of this page for 45 more news items.

"I regard it as a modern tribute to femininity, disability and motherhood. It is so rare to see disability in everyday life -- let alone naked, pregnant and proud."

--Alison Lapper, whose nude likeness from when she was 8 1/2 months pregnant will be displayed in London's Trafalgar Square next spring. Lapper, an artist and mother, was born without arms and is just under 4 feet tall (Fifth story)

"If this is knowingly and deliberately carried out, this would result in a true euthanasia by omission."
--Pope John Paul II, talking about the practice of removing feeding tubes from patients considered to be in "persistent vegetative states" (Second story)



Busy, Productive Week For ADAPT In DC

By Dave Reynolds, Inclusion Daily Express
March 25, 2004

WASHINGTON, DC--It took some doing -- and dozens of arrests -- but activists from the disability rights group ADAPT garnered support for two bills that would help people to live in their own homes rather than be forced into nursing homes and other institutions.

Five hundred ADAPT members from 30 states gathered in the nation's capital to pressure lawmakers to hold hearings on S. 971, otherwise known as MiCASSA, the Medicaid Community-Based Attendant Services and Supports Act, and S.1394, the Money Follows the Person Act. MiCASSA would change the current bias within Medicaid that spends nearly 75 percent of long-term care funds on nursing homes and other institutions rather than in-home supports. The Money Follows the Person Act would give money to states to help transition people from institutions to community-based services.

Both bills have been stalled in congressional committees for several months. MiCASSA has languished in Congress for more than six years. Advocates were further frustrated that the Senate Finance Committee had scheduled an April 7 hearing on the President's New Freedom Initiative, but had not planned to discuss either measure.

On Sunday, demonstrators gathered for a sundown vigil at the White House to honor all of the people who have died in nursing homes and institutions, and for those who are still housed in such facilities.

Hundreds of ADAPT members staged a six-hour "lie-in" at the Health and Human Services building on Monday, to demonstrate that the agency is "lying" about its commitment to people with disabilities. As a result, the group secured a promise from the Centers for Medicare and Medicaid to issue a letter to state Medicaid directors, encouraging them to use their own authority to move money to community-based services. Officials at CMS also agreed to resume regular meetings with ADAPT organizers.

Democratic Presidential candidate Senator John Kerry gave the advocates a personal message of support for the initiatives.

"As with racial segregation, we must put an end to the institutional bias in Medicaid that prevents millions of Americans of all ages from experiencing freedom, independence and choice," Kerry said.

On Tuesday, more than 400 ADAPT members occupied the Senate Finance Committee Hearing Room for 8 hours after the staff of Finance Chair Senator Chuck Grassley refused to commit to holding hearings on MiCASSA and MFPA. Capital Police arrested 129 of the demonstrators when they refused to clear the chamber or hallways.

Advocates were more successful on Wednesday, when representatives of ADAPT, the National Council on Independent Living, Paralyzed Veterans of America and Advancing Independence Modernizing Medicare and Medicaid met with Senate Finance Committee ranking Democrat Senator Max Baucus, who committed to adding MiCASSA and MFPA to the April 7 hearing.

ADAPT members also secured meetings with the Democratic leadership in the Senate and House of Representatives to help move the measures forward.

ADAPT Action Washington DC March 21-25
Tom Olin Pictures of ADAPT



Pope Calls Removal Of Feeding Tubes "Immoral"

By Dave Reynolds, Inclusion Daily Express
March 25, 2004

VATICAN CITY--Pope John Paul II said Saturday that it is immoral to withdraw food and water from people considered to be in vegetative states.

The pontiff spoke on the subject during a conference concerning the ethical dilemmas surrounding people who are considered legally incapacitated because of severe brain injuries. He said that even the terminology, "persistent vegetative state", was degrading, because a person is never a "vegetable" or "animal".

Providing food and water is not artificial medical intervention, the pope said, but is natural, ordinary and appropriate for any person, regardless of how disabled or ill.

Since no one knows when a person in such a state might awaken, "the evaluation of the probability, founded on scarce hope of recovery after the vegetative state has lasted for more than a year, cannot ethically justify the abandonment or the interruption of minimal care for the patient, including food and water," he said.

"If this is knowingly and deliberately carried out, this would result in a true euthanasia by omission," he told the audience.

The conference was organized by the World Federation of Catholic Medical Associations and the Pontifical Academy for Life.

According to various news sources, John Paul added that families of people such as Terri Schiavo need more economic and emotional support.

Terri, who lives in Tampa, Florida, has been in what some doctors consider a persistent vegetative state since she collapsed and her brain was without oxygen in February 1990. She breathes and regulates her heart and blood pressure on her own, but receives food and water through a gastronomy tube installed through the wall of her stomach. Her husband successfully petitioned the courts to have Terri's feeding tube removed last October. He said his wife told him she would not have wanted to live in her condition.

Terri's parents have fought to keep their daughter alive, claiming that she is aware of her surroundings and responds to them. They enlisted the help of Governor Jeb Bush, who championed a law through the legislature giving him the authority to have Terri's feeding tube reinstalled six days after it had been removed.

The law is being challenged by Terri's husband, who claims the governor violated her right to privacy, along with Florida's constitutional separation of powers.

"Terri Schiavo's Right To Live" (Inclusion Daily Express Archives)
Terri Schindler-Schiavo Foundation



Former Town Manager Claims Board Used Disability As Excuse To Fire Her

By Dave Reynolds, Inclusion Daily Express
March 25, 2004

PRINCEVILLE, NORTH CAROLINA--A former interim town manager has sued this small town with a population of 900, for discriminating against her because of her disability.

According to a brief story in the Tarboro Daily Southerner, Sandra Winder filed a complaint last month with the U.S. Equal Employment Opportunity Commission, claiming the town terminated her on August 8, 2003 because of her mental illness.

In her petition, Winder wrote that she learned on July 29 that she was going to be fired -- by reading about it in the local newspaper. Winder said that the paper included comments made by Mayor Priscilla Everette-Oates during a July 28 town meeting, in which she apparently announced Winder's termination, and referred to her disability as a reason for letting her go.

Everette-Oates was referring to a decision made by the board in closed session three days earlier. The mayor reportedly had told the board that Winder's job performance was suffering, that she had missed too many days of work, and that she had a history of mental illness.

Winder, who had been Princeville town manager from 1997 to 2000, was hired to work on an interim basis from May through November 5, 2003. She said the board hired her knowing fully about her diagnosed depression.

"I believe I was discriminated against in violation of the Americans with Disabilities Act of 1990," Winder wrote in her complaint.



"The Modern-Day Venus de Milo"

March 25, 2004

LONDON, ENGLAND--The following five paragraphs are excerpts from a story recently published on-line by BBC News:

When heavily pregnant with her son, artist Alison Lapper posed naked for a sculpture which is about to take pride of place in the heart of London.

The work - entitled Alison Lapper Pregnant, by Marc Quinn - has been selected to fill the empty fourth plinth in Trafalgar Square for 18 months, the latest in a rota of sculptures for the plinth (pedestal).

It is a work which celebrates all that is important to Ms Lapper - single motherhood, acceptance of disability, and her own body as a thing of beauty.

"I've explored these issues in my own work, through photography and installations, but I never would have been able to afford to do so in 15-ft high Italian marble, as Marc will be able to do with this sculpture," she says.

"I love the fact that it has got the UK talking, that it gives disability a platform for debate. It's a positive image of womanhood, even though it's not going to appeal to those who wanted the Queen Mother up there."

Entire article:
"The modern-day Venus de Milo" (BBC News)
"Winning art for the 4th plinth" (BBC News)
"Marc Quinn web page" (Fourth Plinth Project)



ILRU (Independent Living Research Utilization)

The ILRU (Independent Living Research Utilization) program is a national center for information, training, research, and technical assistance in independent living. Its goal is to expand the body of knowledge in independent living and to improve utilization of results of research programs and demonstration projects in this field. It is a program of TIRR (The Institute for Rehabilitation and Research), a nationally recognized medical rehabilitation facility for persons with disabilities.

Since ILRU was established in 1977, it has developed a variety of strategies for collecting, synthesizing, and disseminating information related to the field of independent living. ILRU staff--a majority of whom are people with disabilities--serve independent living centers, statewide independent living councils, state and federal rehabilitation agencies, consumer organizations, educational institutions, medical facilities, and other organizations involved in the field, both nationally and internationally.


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


Children With Disabilities Caught In Middle Of Iraq Conflict

By Dave Reynolds, Inclusion Daily Express
March 25, 2003

BAGHDAD, IRAQ--While U.S. and Allied forces bomb government buildings and other installations in the Iraqi capital, hundreds of children with disabilities are facing the war from inside several nearby institutions, the Associated Press reported Tuesday.

International relief organizations are working to deliver food from local reserves and from nearby Jordan to the facilities which house 900 children with cerebral palsy, multiple sclerosis and other disabilities. In the past few days, Iraqi UNICEF workers have managed to deliver tinned meat, wheat, rice, milk, and high-protein biscuits to the six institutions, four of which are in central Baghdad, the other two of which are in Karbala to the south.

When the bombing started last week, some of the children were sent to stay with family members until the end of the conflict. Most of those who remain are either orphans or children who had been abandoned by their parents.

Geoff Keele, a U.N. Children's Fund spokesman, told the AP that two UNICEF staff members visited the institutions over the weekend.

"The children could hear the explosions from their rooms," said Baghdad aid worker Hatim George, of the nightly and now daily bombing raids.

None of the facilities had been damaged, nor had the children been directly injured. George explained he was worried, however, about the psychological harm the children are suffering.

"Some of the children appear to have been traumatized by the sounds of bombing going on outside," said George.

"You can see fear in their faces."

Institutional staff members, who are staying at the homes 24 hours a day, told George they are worried that they will not be able to maintain adequate child-care standards much longer if the raids continue.

"Disabilities And The "'War On Terror'" (Inclusion Daily Express Archives)


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