From the New York Times, a discussion among people with chronic illness about how much information to give their employers about their medical condition. Richard M. Cohen, author of “Strong at the Broken Places,” says he didn’t tell his employer about his multiple sclerosis because he was afraid he would be considered unemployable.

Others disclose their diagnoses right away. Gayle Backstrom, author of “I’d Rather Be Working,” advises people to keep their conditions to themselves as long as possible, just to be on the safe side.

The Americans with Disabilities Act prohibits an employer from dismissing or failing to hire a chronically-ill employee on the basis of that disability “if they are able to do the job with reasonable accommodation,” Backstrom said. But in many cases, “reasonable” and “able” and even “job” all become open to interpretation.

From Backstage.com:

Actors like Ann Marie Morelli, who played Hermia in Midsummer Night’s Dream in Manhattan to positive reviews last year, are trying to get audiences to rethink their ideas about disability. Morelli uses a wheelchair.

Indeed, people with disabilities are rarely seen on stage, on television, or in films despite being a sizable minority in the United States.

According to the U.S. Census Bureau, about 18 percent of Americans — over 51 million people — have some level of disability. Yet, according to a 2005 Screen Actors Guild report, less than 2 percent of TV characters display a disability, and only 0.5 percent have speaking roles.

… Robert David Hall, who plays Dr. Al Robbins on CSI: Crime Scene Investigation, said the absence of performers with disabilities from the report reflects Hollywood’s reluctance to even consider writing roles for and casting these performers.

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The Barack Obama campaign website highlights the candidate’s agenda for people with disabilities. It includes a short video in which he calls for building “a world free of unnecessary barriers, stereotypes, and discrimination,” and endorses screening, early intervention, research and education services for people with autism. A comprehensive document called the “Plan to Empower People with Disabilities” is included. It calls for:

• Providing educational opportunities for people with disabilities (which includes such points as fully funding the Individuals with Disabilities Education Act (IDEA); early intervention for children with disabilities; and improving college opportuities for high school graduates with disabilities)
• Ending discrimination and promoting equal opportunities for people with disabilities
• Increasing the employment rate of people with disabilities
• Supporting independent, community-based living for Americans with disabilities

Accompanying the plan is an endorsement from four former Clinton administration officials who call Obama “the disability community’s best choice for change.”

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From the New York Daily News and MSNBC, news about a book by Richard M. Cohen, bestselling author whose earlier memoir ‘Blindsided’ gave readers an insight into his life with multiple sclerosis and colon cancer.

Ninety million Americans live with chronic illness. In his latest effort, Cohen helps readers explore their world by documenting the journeys of five people who have adapted to illness. Among the illnesses represented are ALS (also known as Lou Gehrig’s disease), non-Hodgkin’s lymphoma, muscular dystrophy and bipolar disorder.

His message: these “citizens of sickness” are resilient, valuable people who are determined to live life on their own terms. In bearing witness to their lives, Cohen challenges public ignorance and offers lessons of courage and hope.

Married to “Today” show co-anchor Meredith Vieira, Cohen had trouble talking to his wife and their three kids about his anguish. In his autobiography, “Blindsided: Lifting a Life Above Illness: A Reluctant Memoir,” he disclosed all the details.

“I really was reluctant because I fought tooth and nail against revealing myself,” Cohen admits. “I didn’t want to tell my own story because the thought of actually laying open my life was unthinkable. (more…)

By Gretchen Berland, M.D., in the New England Journal of Medicine. Access to this article is free.

Berland is a documentary-filmmaker-turned-internist as well as an assistant professor of medicine at Yale University School of Medicine. She recently completed a lengthy project that culminated in the film “Rolling,” documenting the lives of three people in wheelchairs in Los Angeles. Berland gave her subjects videocameras with which to explore the activities, thoughts and perspectives of their daily lives, and compiled more than 200 hours of material into a single narrative.

An excerpt from her account of the project:

The participants filmed events related to their passions: basketball, camping, disability rights, music …

Moments of extraordinary frustration were also recorded, a scene captured by [Vicki] Elman being a striking example. After 20 years of living with multiple sclerosis, Elman required a power wheelchair. One afternoon, her regular public-transportation service picked her up from an event, and during the ride home, her wheelchair stalled inside the van. (more…)

From New York Newsday:

In what is being hailed as a genetic bonanza, scientists have pinpointed two key DNA variants that elevate the risk of multiple sclerosis.

Since 1868 when the degenerative neurological disorder was first described, medical investigators have tried to shed light on its underlying cause. And even now with the announcement of two genetic discoveries — the first in more than three decades — scientists say they still have years to go before they fully understand MS.

From the Times (UK): Genetic breakthrough offers MS sufferers hope of new treatment

Also in the Washington Post and elsewhere.

Scientists reporting in the New England Journal of Medicine report that three genes will offer new understanding to multiple sclerosis and may lead to new treatments. Skeptics among us will be forgiven for remembering that scientists had the same idea half a century ago, after French geneticist Jerome Lejeune identified the triple 21st chromosome in Trisomy 21 (Down syndrome). And have new treatments for Down syndrome materialized? Nope. There are, however, lots of very profitable prenatal screens and tests that are widely used to prevent the births of infants with Down syndrome.