The media got it wrong!
By Greg Smith
(Modified 4/23, 5:25 AM: Changed from press release format to blog opinion piece; added sourcing)
Maickel Melamed, the disabled Venezuelan man who completed the Boston Marathon in 20 hours has a disability, but it is not a form of muscular dystrophy. His own web site describes the source of his condition: “After a hard and complicated labor because his umbilical cord had been wrapped around his neck choking him, leaving his body motionless, he was diagnosed with “motor delay,” which is a state of general hypotonia of the body, ie, it was an inert mass without possibility of movement.”
Advocates with neuromuscular disabilities are requesting media correction.
While the diagnosis of his disability doesn’t lessen his accomplishments as a marathon runner, it is important for people to understand what ‘Muscular Dystrophy’ does. Muscular Dystrophy is an umbrella name for diseases that weaken the musculoskeletal system and hamper locomotion. People with MD endure progressive muscle weakness. Walking as an adult is rare. Running a marathon is simply not possible.
Introducing NMD United a non-profit 501(c)3 organization consisting of adults with neuromuscular diseases
I serve on the Board of Directors for a NMD United, a non‐profit organization with the mission connecting adults with neuromuscular disabilities. NMD United’s President, Emily Wolinsky, who has Spinal Muscular Atrophy, founded the organization in 2013 based on her idea that adults with neuromuscular disabilities needed a way to connect, share knowledge, support each other, and empower one another.
“There are misconceptions about neuromuscular disabilities that need to be corrected,” says Wolinsky. “We are not somebody’s ‘kids.’ We are living closer to normal life-spans. We are working, managing our own lives, marrying, having kids, voting and paying taxes, but we aren’t running marathons. Identifying someone with the wrong disability is like calling a pregnant woman fat. Inaccuracies matter and they hurt.”
As a 30-year broadcasting veteran and graduate of the Walter Cronkite School of Journalism at Arizona State University, I am not surprised by the media’s latest mistake in reporting about disability. In addition to the wrong diagnosis, in media coverage, Mr. Melamed is referred to as a “victim,” “stricken with,” and “suffering from.” Words such as these certainly don’t help the employment rate among people with disabilities. I invite executives in the media take a stand to show as much respect to disability advocates as they show to other minority groups.
The National Center on Disability Journalism at Arizona State University has the road map online for journalists in the form of the Disability Style Guide. And I would welcome opportunities and am available as a resource to help train journalists on the importance of language in disability coverage.
“The Strength Coach” – Greg Smith Broadcaster, Author, Speaker
Emily Wolinsky – President, NMD United