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Archive for February, 2009

A nontraditional love story

Saturday, February 28th, 2009

Lindsey Nebeker and David Hamrick, Glamour photoFrom Glamour Magazine and Good Morning America (with video):

David Hamrick, 29, and Lindsey Nebeker, 27, who both have autism, are in love and have created a careful balance of routines so that they can live together.

Hamrick, a meteorologist, and Nebeker, a musician, met in 2005 at an autism conference, and their relationship blossomed from there. In a nontraditional twist that works for them, they have separate bedrooms and often eat separately to maintain the space that they need in their Jackson, Mississippi apartment.

Even though the arrangement requires compromise, the couple says they can offer each other unique support and understanding.

“When I have had a bad day at work or just a bad day for some other reason — and I come home, I don’t even have to say anything, he senses it. Dave will come up to me and start cuddling up to me and that’s really all I need,” Nebeker said. “I know that I am with a partner who is not going to judge me for certain eccentricities I have.”

(Glamour photo)

Iowa governor says state ‘failed’ disabled workers

Saturday, February 28th, 2009

Atalissa scandal grows

From the Des Moines Register:

Iowa Gov. Chet Culver said this week that “every level of government bureaucracy failed” to protect the dozens of workers with intellectual disabilities who were recently evacuated from a padlocked bunkhouse in the town of Atalissa.

The governor’s statement followed disclosures this week that the Iowa Department of Human Services had declined a request from Texas officials to investigate the men in 1997. Iowa also denied two subsequent requests for investigations, including one by a caretaker who alleged that the men were being abused and neglected.

The men had been employed by a Texas company and were working at an Iowa turkey processing plant for most of the past 35 years, where they were paid as little as 44 cents an hour. They were provided with room, board and care in a century-old building in Atalissa that was recently closed by the state fire marshal. Conditions in the bunkhouse were described by an Iowa health official as “deplorable.”

State and federal criminal investigations are ongoing. The Texas employer, Henry’s Turkey Service, has denied any wrongdoing.

See also:

Task force urges action to help mentally disabled — Houston Chronicle

Register all boarding houses, says task force — Des Moines Register

Abuse, sex for pay alleged at bunkhouse in Atalissa — Des Moines Register

Earlier posts here.

‘Iona and Ivan — A tale of two children and two families’

Thursday, February 26th, 2009

Fiona Birrell and her mother, Linnet Birrell, UK Independent photoIan Birrell, deputy editor of the [UK] Independent and the father of a teenager with complex disabilities, reflects on the recent death of Ivan Cameron, the six-year-old son of UK Conservative leader David Cameron.

Over the years, Birrell says, he Cameron bonded over their shared understanding of the “hidden world of disability” and the need for improvements in government supports for the families of people with disabilities. Birrell’s daughter Iona is blind and has a seizure disorder.

An excerpt:

Over the years, we have swapped notes, discussed schools and doctors, and talked about how our disabled children have impacted on our lives and our beliefs. We have been thrust into the hidden world of disability, a land shockingly ignored by the rest of society. This has opened our eyes to the terrible failures of public services, the paucity of respite care, the endless battles against bureaucracy – and also to the immense service performed by an army of poorly paid carers and under-appreciated health workers. It has changed my views on the health service and hardened my support for immigrants, the unsung heroes of the caring world. It has increased his determination to support carers and health workers, sort out special schooling and hand power back to the users of public services rather than the providers.

… Listening to some of the coverage in the media yesterday, there is a common sentiment expressed that Ivan’s death will be a form of closure, that there might be a sense of relief that the struggle is over. This is a view that reveals so much about attitudes to people with disabilities. No one should be fooled: the only feeling will be one of numbing grief at the death of a cherished member of a family. People have asked me if the death of a disabled child is less traumatic, given that it is always a possibility. I can’t imagine that the trauma is any less intense.

We are fortunate that Iona is still with us and that we can still enjoy her life. But no parent ever gets over the death of a child – and a disabled child, even one with profound learning difficulties for whom life is a struggle and filled with pain, is no different. Our daughter’s life brings us sorrow, but it also brings us intense joy and meaning. Ivan’s death means only that, beside the happy memories, there will be a scar on his parents’ hearts that can never be healed.

Earlier posts here.

(Photo from the [UK] Independent)

The legacy of Ivan Cameron

Thursday, February 26th, 2009

‘Parents see the world through their children’s eyes. And Ivan Cameron changed his father’s view of everything.’

Writing in the [UK] Independent: columnist Deborah Orr says the life and death of Ivan Cameron  profoundly shaped the views of his father, UK Conservative leader David Cameron — and thus, perhaps, the future of a nation. Six-year-old Ivan, who had cerebral palsy and epilepsy, died this week.

Through Ivan, she says, David Cameron came to understand the challenges faced by people with disabilities, many of whom cope daily with  poverty and isolation. Cameron is considered likely to be the UK’s next prime minister.

An excerpt:

Young as he was, Ivan had a place in the public life of the nation, at least by proxy. He featured in speeches. His influence could be seen in Conservative Party policy. Cameron admitted that his views, especially his views about the National Health Service, had been altered by the experience of caring for a son with complex needs. Cameron also opted for state-sector schooling for Ivan, and admitted that his son’s special needs prompted him to think hard about the limits of inclusive educational policy.

… The failures of the present government, rather than his own clarity of purpose, are the factors likely to deliver Cameron to power at the next election. But Cameron is the first to acknowledge that his experience of being a father to Ivan has already had a strong influence on the direction in which Cameron wishes to steer Conservatism.

In this way, Ivan’s short life will continue to have a highly significant legacy: He changed his father, and his father has ambitions to change the country. This is, of course, just as it should be.

See also: The quiet heroism of carers, editorial in the [UK] Independent

An excerpt:

[The Camerons'] devoted parenting has illuminated the predicament of all those caring for severely disabled children. And the reality is that too many of these families are offered inadequate support.


Experiencing college with learning disabilities

Wednesday, February 25th, 2009

Brittany Ross, US News and World Report photoFrom U.S. News & World Report:

Brittany Ross (left) is working as a hostess intern at Walt Disney World Orlando after a stint at the College Living Experience (CLE) program and the Community College of Denver. She has a diagnosis of  Asperger’s syndrome

CLE is a private program operating in six cities around the country that helps students with learning disabilities, particularly those with autism and Asperger’s. Students enroll simultaneously in CLE and a college near one of the program’s centers, and work on social skills and independent living as well as academics.

There are presently 187 students enrolled in the nationwide program. The cost is $33,500 per student per year, and can be partially subsidized by some states.

“Comprehensive support is so crucial,” [social coordinator and resident adviser for CLE's Denver program, Kirk Redwine] says. “To think someone with so many issues could do college without this type of multifaceted assistance is setting them up to fail.”

Earlier posts here.

(Photo from U.S. News & World Report)

Obit: Award-winning Irish author and poet Christopher Nolan

Wednesday, February 25th, 2009

Christopher Nolan, photo from New York TimesFrom the New York Times:

Acclaimed Irish author and poet Christopher Nolan, 43, died Friday in Dublin. Nolan produced a highly praised volume of verse and short stories at the age of 15, then went on to take the prestigious Whitbread Prize for his autobiography, Under the Eye of the Clock.

Nolan had cerebral palsy, and was unable to speak and virtually unable to move voluntarily. Family members said the cause of death was food trapped in his airway.

Nolan had been able to communicate only through eye movements until the age of 11, when a new drug was found to relax his neck muscles. He began writing through the use of a “unicorn stick” strapped to his forehead, typing a letter at a time on a keyboard as his mother held his chin in her hands.

A prominent Los Angeles producer wanted to make a film of Mr. Nolan’s life story. Mr. Nolan turned the offer down.

“I want to highlight the creativity within the brain of a cripple,” he wrote to the producer, “and while not attempting to hide the crippledom I want instead to filter all sob-storied sentiment from his portrait and dwell upon his life, his laughter, his vision, and his nervous normality. Can we ever see eye-to-eye on that schemed scenario?”

(Photo from the New York Times)

David Cameron’s son dies

Wednesday, February 25th, 2009

David Cameron with son Ivan, [UK] Telegraph photoHad cerebral palsy, epilepsy

From the BBC, [UK] Telegraph:

Six-year-old Ivan Cameron, the eldest son of UK Conservative leader David Cameron, has died after a brief stay in the hospital.

In a statement, Prime Minister Gordon Brown said he and his wife Sarah were “very saddened” by Ivan’s death. “I know Ivan was a child who brought joy to all those who knew him and his was a life surrounded by love,” he said.

An excerpt:

Describing the moment when he learned of Ivan’s disabilities, Mr Cameron told the Sunday Times in 2005: “The news hits you like a freight train.

“You are depressed for a while because you are grieving for the difference between your hopes and the reality. But then you get over that, because he’s wonderful.”

The BBC’s political editor Nick Robinson said Mr Cameron’s experience of looking after Ivan, who needed round-the-clock supervision, had shaped Mr Cameron’s character and his attitude to the NHS.

Friends have previously attributed Mr Cameron’s “modernizing” leadership of the Conservatives to the National Health Service care Ivan received.

The illness has also helped the Tory leader realize that there is more to life than politics, they have said.

In a 2007 speech, Mr Cameron said: “I help care for a severely disabled child — my son.

“It’s what I do at the start of each day. It’s sharpened my focus on the world of care assessments, eligibility criteria, disability living allowance, respite breaks …

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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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