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.

From a press release from the National Council on Disability:

People with disabilities face significant barriers to health care and are in need of immediate health care reform, according to a federal report released yesterday.

The report by the National Council on Disability found that people with disabilities frequently lack health insurance or coverage for necessary services, are disproportionately in poor health because their health conditions are not well managed, and are less likely to use preventive health care measures.

Among barriers faced by people with disabilities, the report found, are stereotypes about disability; medical personnel who haven’t been trained in meeting their needs; a lack of accessible medical facilities, equipment, and sign language interpreters; and a health care system that is more concerned with preventing disability than with improving the quality of life of people who have disabilities.

(more…)

‘I feel like I’ve lied to a lot of people’

From Newsweek (with video):

Alan T. Brown, who is quadriplegic as the result of an injury, has spent the last two decades trying to find a cure for people who are paralyzed. Now he’s changed his emphasis, working toward improving medical care, insurance coverage and quality of life for people with spinal cord injuries.

“All those people that I’ve spoken to over the years, in the hospitals and the families, and I said ‘one day there’s going to be a cure,’” he says. “And I hope there is … But I can’t guarantee that’s going to happen and I’m not going to sit around and wait any more. I have two children that I have to make sure are cared for.”

Brown is collaborating with the Christopher and Dana Reeve Foundation, which changed its slogan in the summer of 2008 “Go Forward” to “Today’s Care. Tomorrow’s Cure.”

“When we first started, our entire focus was to find a cure, to get people walking again,” says Reeve Foundation president and CEO Peter Wilderhotter. “As we came to realize that since no injury is completely alike and given the complexity of the spinal cord—there will be no ‘magic bullet.’”

From the Detroit News:

Researchers at the University of Michigan say children with autism and Down syndrome who learn to ride two-wheeled bikes are more likely to stay physically active, leading to many health benefits.

The research, which focuses on a five-day bike camp, is funded by the U.S. Department of Education. Lead researcher Dale Ulrich said preliminary results show that learning to ride a bike also helps the children become more social, verbal and independent. Ulrich is director of U-M’s Center for Physical Activity & Health in Pediatric Disabilities.

Earlier post here.

See also: Atlanta Journal-Constitution photos from Lose the Training Wheels Bike Camp session, held earlier this month.

(Detroit News photo)

Writing for this weekend’s New York Times Magazine, philosopher Peter Singer argues for rationing health care.

He says rationing is already taking place — we deny treatment to those who can’t pay — and it must be formalized within public insurance plans like Medicaid because the public can ill afford to pay limitless prices for treatments that will only extend life by a few months, or to care for individuals with severe conditions that are very expensive to treat.

Singer acknowledges that his argument will draw criticism from disability advocates, who say health care rationing implicitly discriminates against people with disabilities. The basis for Singer’s argument is an economic  measure called the QALY (Quality Adjusted Life Year), which measures disease burden by assigning numerical values to the quality and quantity of a life lived.

(Graphic from the New York Times Magazine)

From the StoryCorps oral history project on National Public Radio:

Ricky Boone, a magician and owner of a magic shop in Asheville, NC, tells his friend Patty Barber about the teacher who transformed his life.

Boone was born with a rare bone disorder that stunted his growth and limited his mobility. He says he spent his childhood in a rural area where “people were ashamed that the next door neighbor was a disabled child.” Then one day, everything changed: a new teacher showed up at school on a Harley motorcycle. He was wearing a black leather jacket.

That teacher, Grovner Wood, became the principal and embarked upon teaching Boone magic tricks, frequently paging him over the loudspeaker to come down to the principal’s office.

Today, Boone says he owes everything to his former principal. He’s been a professional magician for 36 years and owns his own magic shop, Magic Central.

He says that people “see me as someone to pity. It takes a lot to get past that initial shock. But if I can make that person laugh their butt off, then they have no time to feel sorry for me, and they forget that I’m in a chair.”

A study in the current issue of Pediatrics reports that parents of premature infants place a ’significantly’ higher value on their children’s lives, regardless of disability, than do health care workers who are involved in neonatal care decision-making.

Most health care workers surveyed said that having multiple disabilities is worse than death, whereas most parents of premature infants said that death would be worse than living with disabilities.

Researchers reported that parents of premature infants were most likely to want to save an infant at all costs. They say parents of premature infants who have experience caring for children with disabilities should be included in counseling new parents of critically ill infants.

Their participation is needed, the researchers say,

“so that a balanced view could be presented to parents of critically ill infants and increase the probaility that they would make informed decisions that they would not later regret.”

(Subscription required.)