The Ehler-Danlos Syndrome community (with support from the American Pain Foundation) is expressing strong opinions to ABC after the network's Medical Mysteries series featured an episode about EDS, an inherited condition that affects the structure of connective tissue throughout the body. Folks with EDS generally have "fragile skin and unstable joints," though the syndrome has a wide range of manifestations, according to the Ehler-Danlos National Foundation. Media attention, when it comes to EDS, almost invariable focuses on those with very hypermobile joints and "elastic" skin-- the "party tricks" of the impairment. "Circus Star is Real-Life Elasti-boy" trumpets the ABC press release.
Where's the harm? Well, for one, it's tedious to tell the same story over and over again. Any show that can be summarized as "Hey, look at this guy!" is hardly an innovative use of any medium. And sensationalizing bodily difference doesn't really educate or "raise awareness," it just encourages unwarranted pity and voyeuristic stares. Worse, if the only story about EDS that the public ever sees is this kind of gee-whiz coverage, it distracts from the more pressing concerns and everyday issues important to people with EDS: the distorted public perception can interfere with timely identification and treatment, and stigmatize those with the diagnosis.
The ABC Primetime message board is lit up with eloquent protests from the EDS community, and some pretty clueless responses from the show's producers. They describe difficulty in finding a doctor to take their pain seriously, they describe daily pain and frequent surgeries, and the real possibility that the effects of their EDS will be fatal someday. "No, EDS is not at all a funny disorder worthy of a circus side-show," explains one viewer.
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I have an unfinished draft for a blog post entitled "Dwarfs are the new lesbians" because there've been so many short folks on tv in the past year -- including this ABC medical mystery show. It seems what has become trendy IS the "hey, look at this guy" phenomenon. It does very little to normalize disability and bodily difference. Perhaps the dramas like "Boston Legal," with it's sexy dwarf lawyer, and "Nip/Tuck" with the guy (actor and short guy Peter Dinklage) who is a nanny does more to benefit ideas of difference than nonfictional coverage.
I agree - it isn't funny! It's hard enough to explain it to friends and family. Try living in a very small town and getting the schools to not just understand, but put in place proper support. This could have been a great teaching tool - but instead it is harmful to those of us who really have problems.
Please, continue to visit the Primetime message boards and post your opinions. Post in your blogs. Tell people this is not how things really are, and help them get the real information!
Despite the clear outrage from the EDS community, ABC STILL has the very offensive "Circus of Horrors" tag with photos clearly meant to shock. How could anyone at the network have mistaken this for real reporting? Kudos to the EDS community for mobilizing so quickly.
BTW, the same episode of Medical Mysteries had a segment on situs inversus (reversed organs) that left out the one disease commonly associated with it, Kartagener syndrome. No mention of this chronic, progressive lung disease at all despite the fact the nearly one-third of all people with situs inversus have it. I guess for the disabled and chronically ill, our choice is to be relegated to freak show status or to be totally invisible.
To clarify, the Ehlers-Danlos National Foundation and the American Pain Foundation are NOT mobilizing "AGAINST" ABC. Rather these two non-profit patient support organizations are mobilizing folks within the Pain and EDS communities to speak up about their own opinions regarding the program. To this end, The American Pain Foundation has provided a website page with a form to fill in and send such feedback to ABC producers.
The premise is that if we make a concise statement of our feelings about the program, it should be followed up with a suggestion of what we would like to see in a future broadcast.
For example:
Dear producers,
I liked/disliked the program because of _______ .
I would have preferred to see ________ (i.e., Dr. Nazli McDonnell explain in more detail.)
On a future broadcast, please include _______ (i.e., medical mystery, profile of a child)
WCEdser--thank you for the clarification. I'll fix the imprecise language in the original posting, in light of the information you have provided.
Sadly, it is very evident that when it comes to disabilities, the media is not in the business of providing information and intelligent discussion. This travesty could also be seen in the lack of serious coverage of the "Ashley Treatment", and is seen repeately in the never-ending stories of inspirational heroes overcoming some disability. It seems that stories are reduced to spectacles or confrontations that will grab audience attention for a few brief moments.
Janet
Apparently the mainstream media has descended into competition with the "tabloids." One thing they don't get is the idea of mainstreaming.
In their attempt to compete with the Tabloids, they continue to portray PWD's as "side show exibits."
Or, worse, if ignore PWD's altogether.
To the media we are either invisable or we are objects of curiosity.
This is extreemism, not news.
Educating the public about disability is growing ever more critical, and I believe web blogs is a good step in doing it.
Some of what I've seen with a label of "Disability awareness" makes me cringe. Magenta will be posting on the subject at our blog in a few hours.
The mainstream media is always going to be about sensationalism as long as people are watching, reading, and listening. I think we have to expose the community at large to disability so they can get over themselves. That why we've listed at general Oregon blogs. We want disability to be right there with all the other blogs about muffin making, snow boarding pics., and Brittney gossip.
And thanks for putting my MLK piece on this blog.
Ms. Magenta has done her thang... check it out at http://dawgoregon.blogspot.com
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