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Famous disabled Boston Marathon runner does NOT have muscular dystrophy

The media got it wrong!

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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.

Contacts:

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“The Strength Coach” – Greg Smith Broadcaster, Author, Speaker

228-424-3896

www.TheStrengthCoach.com

greg@TheStrengthCoach.com

@strengthcoach

facebook.com/StrengthCoachPage

Skype: thestrengthcoach

 

 

Emily1-4

Emily Wolinsky – President, NMD United

512-698-1554

www.NMDUnited.org

emily.wolinsky@nmdunited.org

http://www.facebook.com/NMDUnited

 

 

 

 


 

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6 thoughts on “Famous disabled Boston Marathon runner does NOT have muscular dystrophy

  1. I am very curious about the correct diagnosis also. It is not just hypotonia, but probably a congenital myopathy. With the very low muscle bulk and thin myopathic facies, I’d bet on nemaline myopathy, or maybe an AD or AR centronuclear myopathy. Still, it really is AWESOME he did the marathons and everything else, just by persevering, going at his own pace, and organizing support!!

    • We are all suffering from various things throughout life, but to perpetually designate people with disabilities as inherently “suffering” is insulting and inaccurate. And it is a relative term, depending on the person. Right now, I’m sitting in my wheelchair, leaning forward against a chest strap typing this message. If you were in the same situation, you might be suffering, but I’m just chilling. Words matter and to define us as perpetual sufferers, victims and the-stricken is offensive. It has to stop.

      • I’m with Greg on this. Never, ever, ever, let a diagnosis define your whole life or being. I HAVE ___ condition. IT does NOT have ME. It may suck to have it, but I will refuse to accept the label of victim because it sounds too passive and too defining.

        For example, I have migraines. They suck. They are nothing less than short trips to hell sometimes! I am not a “migraineur” – sounds like some kind of connossieur – I am a working mom who has reason to be very grateful for the existence and access to triptans. I also probably have bad MC4r receptor genes and I’m predisposed to obesity and diabetes, and I’m hungry just about all the time. I keep a small pharmacy in my purse and briefcase to help deal with these conditions, and though I’d rather not have them, they have taught me a great deal which I needed to know to be better at what I do and how I live.