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Archive for the ‘advocacy’ Category

Group works to include people with disabilities in census count

Friday, February 19th, 2010

By Erica Demarest in Medill Reports at Northwestern University:

Disability rights advocates in Chicago have launched an effort to ensure that people with disabilities are counted accurately in the 2010 census. The Chicago Disability Complete Count Committee is part of a larger campaign targeting historically undercounted groups. An excerpt:

“There are many sub-communities within the disability community,” said Marca Bristo (above), president and CEO of Access Living, a group that services people with a variety of disabilities. “[Census workers] don’t know how to reach us. They don’t know the best way to get the word out in natural places where people with disabilities will find that information.”

There are no direct benefits specifically for people with disabilities since the standard 10-question census form does not ask whether a person is disabled. Still, committee members note that everyone benefits from a complete count.

Many do not participate in the census simply because they don’t know about it. With an unemployment rate of approximately 60 percent, a large number living in institutions and a litany of mobility problems, people with disabilities are more sheltered  than the general population, experts say. They often never see census advertisements.

(Photo from Medill Reports)

Disability advocates plead with Kansas to restore Medicaid cuts

Friday, February 12th, 2010

From the Lawrence [KS] Journal-World, WDAF Kansas City, KWCH-TV Kansas City:

Kansas disability rights advocates pleaded with state lawmakers to roll back a planned 10 percent cut in Medicaid funding, saying that the $22.7 million reduction would put the lives of vulnerable people at risk.

At a Capitol news conference Friday, advocates said the proposed cuts would end up costing more because they would force the state to place people in more expensive nursing homes.

“It’s just mind-boggling that we would cut those services only to force people into institutions which are going to cost taxpayers more dollars,” said Rocky Nichols, executive director of the Disability Rights Center of Kansas.

He said policymakers don’t understand that the cuts “are real and are devastating people’s lives, and without restoring those cuts, it’s only going to get worse.”

Emanuel controversy fuels politically active self-advocates

Thursday, February 4th, 2010

From the Washington Post:

People with intellectual disabilities are nearing success in their efforts to purge the word “retarded” from the national lexicon, boosted in part by the apology of White House chief of staff Rahm Emanuel, reports Michael Alison Chandler,.

The campaign is led in part by the mentally disabled themselves, who are increasingly politicized and eager to escape the stigma associated with the term.

“It’s a time of change” said Jill Eglé, co-executive director at the Arc of Northern Virginia, a support group for the disabled, who spearheaded a campaign to change the state code in Virginia.

The words “retarded” or “retard” feel threatening, she said. Eglé identifies herself this way: “I am a powerful leader with an intellectual disability.

Judi Chamberlin, advocated for people with mental illnesses

Tuesday, January 19th, 2010

By Joe Shapiro, National Public Radio:

Judi Chamberlin, an outspoken advocate for the rights and dignity of people with mental illness, died of lung disease over the weekend at her home in Arlington, Mass. She was 65.

Shapiro calls her “a civil rights hero from a civil rights movement you may never have heard of.”

Chamberlin’s road to advocacy began when she was hospitalized against her will for depression in 1966, and was shocked by the way she was treated. She wrote a book, On Our Own, that became a manifesto for patients and influenced the mental health establishment.

She called her movement “Mad Pride,” and argued that people with mental illness need to have a say in their own treatment. An excerpt:

Chamberlin told people with mental illness that they were, like everyone else, people with quirks and differences, but with strengths and abilities, too. She wanted people to reclaim the description “mad” as something that was OK.

“She changed it from a word that was a pejorative word,” says [Robert] Whitaker [author of Mad in America, a history of the treatment of people with mental illness in the United States]. “That was saying to the world at large: We are worthy individuals, and our minds our worthy, and they’re to be respected.”

See also:

Facing death, a plea for the dignity of psychiatric patients — Boston Globe

Bibliography from the National Association for Rights Protection and Advocacy

Advocates settle access lawsuit for $12 million

Friday, January 15th, 2010

San Diego Chargers owner will retrofit thousands of rental properties

From the San Diego Union-Tribune, AP/ABC, Atlanta Journal-Constitution:

In what is being called the largest disabled-access settlement in the housing industry, [San Diego] Chargers owner Alex Spanos’ development company will spend more than $12 million to retrofit thousands of apartment units found to be out of compliance with fair housing laws governing accessibility.

The settlement covers 15,500 units in 123 apartment properties in 11 states, and stems from a lawsuit filed by the National Fair Housing Alliance against the A.G. Spanos Cos., which is run by Spanos’ sons Michael and Dean Spanos.

In announcing the settlement, the National Fair Housing Alliance praised the developer for crafting a settlement that went beyond the letter of the law.

“It’s unusual for me to praise defendants in a case,” said Shanna Smith, president of the alliance … “This is a landmark, unique, comprehensive settlement.”

Britain apologizes to Thalidomide survivors

Friday, January 15th, 2010

From the [UK] Telegraph, Wall Street Journal, CNNBBC:

The British government offered  “sympathy” and “regret” yesterday to survivors of the Thalidomide scandal, and unveiled a government plan award more than £20 million in compensation to survivors.

The statement, by Health Minister Mike O’Brien, comes more than 50 years after one of the worst public health and political scandals in Britain’s recent history. Thalidomide had not been fully tested before it was prescribed to pregnant women  as a treatment for morning sickness or insomnia starting in 1958. The drug was withdrawn in 1961 after thousands of babies were born with missing or foreshortened limbs, blindness, deafness, and other disabilities.

“The government wishes to express its sincere regret and deep sympathy for the injury and suffering endured by all those affected,” said O’Brien.

Advocates have fought a long and bitter battle for compensation, and for public acknowledgment that the government should have done more to avert or minimize the drug’s disastrous consequences.

Guy Tweedy, of the Thalidomide Trust, said: “I’m highly delighted and so glad that it actually came, 50 years too late but never mind. It’s an apology not just to thalidomide victims but to the parents who lost their children in the early days. The apology means as much in some ways as the money.”

Earlier posts here.

Controversial advocate with Asperger’s nominated to federal post

Tuesday, January 5th, 2010

From the Newark Star-Ledger:

Ari Ne’eman, a 22-year-old man with Asperger’s syndrome, has been nominated by the president to sit on the National Council on Disability. Ne’eman’s appointment has been criticized by some autism advocates who say he is “not quite autistic enough.” He is the first person with autism to be nominated for a seat on the NCD and, if confirmed, would be the youngest person to serve on that board in at least two decades.

The founder of the Autism Self-Advocacy Network, Ne’eman has been aggressive in his criticism of some of the best-known autism advocacy groups, including Autism Speaks.

The exclusive focus on a cure, Ne’eman contends, amounts to medically engineering people like him out of existence. “We should be spending at least as much money on improving our quality of life instead of trying to get rid of us,” he said.

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More than 50 million people in the United States have disabilities, a number that is growing rapidly as the population ages. Experts say disability will soon affect the lives of most Americans. This website attempts to aggregate news and commentary about disability, and to document the efforts of people who are seeking new ways to address familiar challenges.

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