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

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.”

From the [UK] Telegraph, Wall Street Journal, CNN,  BBC:

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.

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.

Charities raised objections when Rita Marcalo got a grant to explore her epilepsy on her own terms

From the Yorkshire [UK] Post, [UK] Times:

Performance artist Rita Marcalo said she felt “guilty that I had perhaps short-changed people” when she failed to induce a seizure on stage as she had hoped, but pleased that her efforts had provoked a public discussion of epilepsy, disability and art in Britain.

Marcalo’s work, called Involuntary Dances, had received a grant of  £14,000 from Arts Council England, and drew criticism from epilepsy charities who said it was dangerous and turned epilepsy into a “freak show.”

The artistic director of a dance company who has had epilepsy for years, Marcalo tried to induce a seizure by ceasing her medications, drinking wine, looking at strobe lights, eating dark chocolate, and depriving herself of sleep. Audience members were urged to document her seizure with their cellphones.

See also:

Epilepsy as live art isn’t controversial — By Allan Sutherland Friday on the [UK] Guardian Theatre Blog. An excerpt:

What Marcalo’s piece highlights is that adults with epilepsy own their own bodies and have a right to choose what to do with them. It illustrates that we are able to speak for ourselves, and don’t need charitable organisations to step in on our behalf. (It’s extraordinary that this is still an issue.)

She is also saying that there are worse things than having an epileptic fit. Several hundreds of thousands of us in this country live with epilepsy in one form or another, and our lives are not blighted … Marcalo’s performance will implicitly say: “It’s just a fit. Get over it.” She speaks for us all.

Dangerous myths about epilepsy — By Dr Sallie Baxendale, BBC. An excerpt:

While certain circumstances may conspire to make a seizure more likely, few reliably trigger seizures in the majority of people with epilepsy.

And there’s the rub.

Living with epilepsy is as much about living with the unpredictability of seizures and not knowing when and where they might occur, as coping with the seizures when they do happen.

In the end it may be Ms Marcalo’s failure to have a seizure on cue that teaches us more about the condition than a public seizure ever could.

Understanding epilepsy: One woman’s story — From the Times Herald-Record, Hudson Valley, NY

From Associated Press/USA Today and Reuters:

The United Nations has appointed musician Stevie Wonder as a United Nations Messenger of Peace. He will will focus on helping to improve life for the estimated 650 million people with disabilities – about 10% of the world’s population.

UN representatives said the singer-songwriter, who has won 25 Grammy awards, is being recognized for his philanthropic work with the U.S. President’s Committee on Employment of People with Disabilities, the Children’s Diabetes Foundation and Junior Blind of America.

Wonder was born in Saginaw, Michigan, in 1950 and became blind shortly after birth.

(Getty Images photo from USA Today)

UPDATE from AP:

Referring to the 650 million people with disabilities, Wonder said, “It is beyond my ability to fathom that 10 percent of the people of this world don’t matter to the other 90 percent of the people in the world.”

“I would hope that every single human being, and every single world leader, will commit themselves to making this world a better place and accessible for every single human being on this planet,” he said.

See also: Wonder promotes message of peace — CNN

Earlier post: UN says huge barriers remain for people with disabilities

From the Trenton [NJ] Times:

Robert Hage, the father of twin daughters who are both developmentally delayed and deaf, called on New Jersey State Treasurer David Rousseau this week to avoid slashing services for people with developmental disabilities.

Hage’s daughters are among 160,000 New Jersey residents who would be affected if the state cuts funding for developmental disability services. Gov. Corzine has asked department heads to plan another $400 million in spending cuts.

“We depend and rely on these services so dramatically,” Hage said. “We desperately need to make sure there’s no cuts.”

Tom Baffuto, the executive director of the Arc of New Jersey, said the state threatened to cut services for people with developmental disabilities last year but backed down after advocates protested loudly.