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Letter sent to the St. Petersburg Times


By Jill Baldwin
This is a letter that I sent to the St. Petersburg Times after Jodee Craig wrote her letter thanking the correspondents and editors for their coverage of Casey Martin's lawsuit against the P.G.A. and the Supreme Court's decision on it. However, since my letter ended up being sent too late the coverage was considered old news and my letter subsequently was not published.

Dear Editors and Correspondents:

In response to the letter by Jodee Craig, our state's coordinator for the Klippel Traunnaney Syndrome support group e-mail list and as a member of our state's support group, I would like to point out the fact that a certain amount of caution needs to be taken in future efforts spread awareness about the disorder. Casey Martin is among the comparatively more fortunate victims of the disorder. Not only is he affected in only one limb, he is also able to afford attorneys who can get his case heard by Supreme Court. In the general population of KTS sufferers, he is more the exception rather than the rule both occupationally and financially.

There are also parents of kids in our support group across with the disorder who have allowed their kids to appear on daytime talk shows of the Sally Jesse ilk. There are also parents who have allowed newspapers in their local areas to do stories on their kids who have the disorder. They are all well meaning and rather enthusiastically support the important objective of further education and awareness about the disorder where Casey Martin's case leaves off. However, I disagree with the choices that these parents have made for their kids in terms of that media attention.

Like many stories about facing adversity particularly when the subject is a child, media coverage such as this often defeats its own purpose by playing up the obvious sensationalism factor that comes with bodily disfigurement, while playing to parental egos and patronizing the audience in the process by emphasizing how ³normal² and ³just like everyone else² they are as if the assumption is that there are little aliens inside of these bodies straight off the space ships from another planet.

It needs to be pointed out here that there is a right way and a wrong way to spread that awareness. Nothing is more obstructive than the media's greed fueling it's own obsession with the slightest hint of sensationalism while playing to those who are too busy pandering to it to stand up to it. This is why members of the media need to ask themselves what kind of attention will generate better understanding, tolerance and acceptance by others, the kind that only fuels Nielsen ratings, circulation figures and advertising revenue or the kind that will improve the chances of better acceptance, tolerance and not being discriminated against?

Further awareness and acceptance goes beyond why a professional golfer needs a golf cart and can't walk as far as the other players or what a court ruling has to say about it. It also reaches into schools, the workplace, as well as the entire medical profession. This is where further awareness is needed the most.

Casey Martin is hardly the first one with the disorder to be discriminated against. How many of the rest of us are able to get lawyers as good as his without the fame and money that were obviously a factor in their agreement to represent him?

Is Mr. Martin's court ruling or the media's overbearing and potentially destructive obssession with to Nielsen ratings, circulation figures and advertising revenues going to have any bearing on schoolyard bullies whose behavior toward kids with the disorder is continually ignored by parents, teachers and principals?

Is Mr. Martin's court ruling or the media's overbearing and potentially destructive obssession with Nielsen ratings, circulation figures and advertising revenues going to have any bearing on job coaches, supervisors, case workers from the Division of Vocational and Rehabilitative services and dope wielding yuppie shrinks who blatantly lie about a KT victim's behavior behind their back and require them to be sufficiently doped as if they were a robot/droid as a condition of both acceptance and continued employment?

Is Mr. Martin's court ruling or the media's overbearing and potentially destructive obssession with Nielsen ratings, circulation figures and advertising revenues going to have any bearing on a state trooper's misinterpreting multiple learning disabilities because of the disorder's affects on the brain for signs of some kind of a potential psychotic nut case while abusing their authority and unnecessarily intimidating a KT victim as a result?

Is Mr. Martin's court ruling or the media's overbearing and potentially destructive obssession with Nielsen ratings, circulation figures and advertising revenues going to have any bearing on their superior officer's lying about adressing a KT Vicim's complaint by taking advantage of their lack of ability to afford yuppie lawyer/programmers whose only language of communication is that which is written in dollar signs and career advancement?

Is Mr. Martin's court ruling or the media's overbearing and potentially destructive obssession with Nielsen ratings, circulation figures and advertising revenues going to have any bearing on a traumatized KT victim's being refused treatment from a Nurse Practitioner?

I don't think so.

All of these experiences are ones that someone with the disorder has had. What is to blame besides the closed mindedness of those involved is a socially destructive lack of standards for the quality of legal representation that transcends individual personal income level and that can't be overshadowed by someone with the good old American right price.

Unlike many other disorders, KTS does not effect everyone in exactly the same way which means there are few if any common denominators in the implications for daily life among most members of our support group. This makes education and awareness that much more complicated.

If the media is to take a further role in spreading awareness and helping to educate and opening the collective mind beyond the implications of Casey Martin's case as this will mean it will have to look beyond the obvious sensational factor in birthmarks, varicose veins and limb deformities caused by the disorder. It will also mean looking beyond the Nielsen ratings shares, circulation figures and advertising revenue, which means creating better standards to make its judgements with.
Sincerely,
Jill Baldwin