Failure to help the ‘lost boys’

From the New York Times, with video:

After more than four decades of Jerry Lewis telethons that raised many millions of dollars in search of a “cure,” the prospects for people with Duchenne muscular dystrophy are still bleak. Thousands of boys are still paralyzed by this muscle-wasting condition, and many do not live past their 20s.

It is a stark reminder of how American medicine — with its focus on breakthrough treatments — can sometimes fail a complex, rare and stubbornly uncurable disease. Single-minded in their pursuit of a cure, doctors and researchers for years all but ignored the necessary and unglamorous work of managing Duchenne (pronounced doo-SHEN) as a chronic condition.

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From Canada.com:

Sixteen-year-old Joe Parsons of Searcy, Arkansas, won a Saskatchewan elk hunt when his mother applied to Hunt of a Lifetime, a non-profit organization that grants hunting and fishing wishes for children with life threatening illnesses. Joe has Duchenne muscular dystrophy.

Joe’s three-day hunt, which begins today, will be at a game preserve, increasing his odds of bagging a big one.

Joe’s wheelchair is outfitted with a battery-operated rifle mount that moves side to side or up and down so he can get a bead on his game.

Since Joe’s arms have limited mobility, a straw-like tube attaches to the trigger mechanism, so when he’s ready to fire, all he does is sip on the straw to pull the trigger.

Hillary Clinton promises, if elected, she would be the president who “puts autism on the map.”

Mitt Romney, in a tense confrontation with a man with muscular dystrophy, says he opposes legalizing the medical use of marijuana. Link includes video of the exchange.

This year’s take: $63.7 million. Associated Press story in the Washington Post.

Late addition: Charleston attorney Harriet McBryde Johnson protests the telethon for the 17th year. Her message: “We want rights, we want equality, we want respect, and we don’t want pity.” Here’s the video from WCBD-TV (Charleston).

Writing in the Washington Post, former poster child Ben Mattlin repudiates the Jerry Lewis telethon for the Muscular Dystrophy Association.

[The telethon features] nondisabled celebrities onstage raising money for disabled kids, who are mostly offstage. I know the purpose of the telethon is to raise money, and that people won’t tune in unless there are performers they want to see. Nevertheless, can you imagine an NAACP fundraiser hosted exclusively by white people?

If you are not disabled, you may think this is a relatively minor issue. But it matters.

… When most people see those of us with severe, progressive neurological conditions, they want to help, and I am not ungrateful. The desire to cure is probably human nature. And MDA’s main mission is to be a medical charity; it claims to spend 77 cents of every dollar it raises on services, an admirable percentage, and finances hundreds of clinics and medical researchers.

Still, for the past 30 years, the message of the disability-rights movement has been as consistent as it is simple: We’re fine as we are. We don’t need fixing. We need access. We need respect. We need work. In other words, we need the same things everybody else does.

… which makes it “unstoppable,” says the Cleveland Plain Dealer. The annual Labor Day event, which started on one television station in 1966, raised $61 million for the Muscular Dystrophy Association last year.

All that money doesn’t innoculate the 81-year-old Lewis against controversy, however. Over the years, the event has garnered regular criticism from disability activists, who argue that Lewis trades on pity and has shown a lack of respect and understanding toward people with disabilities. Here’s a critique from mjohnson on the blog www.dailykos.com, and a protest manual from attorney Harriet McBryde Johnson.

The telethon airs from 9 p.m. ET Sunday, Sept. 2, to 6:30 p.m. ET Monday, Sept. 3. Broadcast times vary; check local listings.

Related story here.

Fifteen-year-old Darius Weems, center, on road trip to Hollywood. LA Times photo.

Here’s a story that’s worth reading all the way through. Karen Day, writing in the Los Angeles Times, brings us a feature about “Darius Goes West,” a thoughtful documentary film about a young man and his wheelchair. A few excerpts:

Equal parts “Animal House,” and “Stand by Me,” this buddy flick tells the story of 12 college-age students who contrive with great expectations and minuscule budget to take their friend from Georgia to Los Angeles to get his wheelchair customized on MTV’s “Pimp My Ride.” It’s a comical and poignant tale.

… In the movie, playing at Laemmle Music Hall Theatre in Beverly Hills … as part of an Oscar bid, Darius rolls across the screen like a sonic boom with a smile, shattering the stereotype of disabled kids and embodying a genuine American idol with Duchenne muscular dystrophy, a disease with a 100% mortality rate.

… This is a film about the transforming power of teamwork and the inherent joys and madness of reaching any seemingly impossible goal … It is a movie of pain, both physical and emotional, with a message of hope and deep affection for the raw and sweet parts of human nature.

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