[Blindtlk] Responses of Medical Professionals.

[Michelle Medina]

Mary,
Right up my alley this email was!
As I wrote in the 'to cane or not to cane' message, I was born with a
very rare birthdefect called a Tessier Cleft. And while I've had 2-3
experiences where doctors asked me about my vision *I have no vision,
the cleft runs the length of my face and upinto my nasal cavity and
where my eyes should have been*, for the most part they do stay on
track.
However, having said that, I've had 66 reconstructive surgeries to
close my face, attempts to repair my hard palate, and surgeries to
build up bone structure and the like, I was treated like an odity.
I've always gone to teaching hospitals, that's where my plastic
surgeon has always worked, all the medical inturns and pre-med
students and basically any student or doctor who wanted to, has been
allowed to come and 'look' at me. I've learned over the years to deal
with it, but 'dealing' with something and 'accepting' that something
is a certain way are different and I'm feeling emotional pain just
writing this. For a long time I believed I was part of the 'freak
show' and once when we were walking past a 'freak show' at a circus I
joked to my Dad: 'Hey Dad! I should be up there! Wonder how much money
they make?'
So it's still part of my life and probably always will be. The only
thing that makes it better is that I'm learning to lessen its affect
on my feelings as I get older and encounter more good people then bad.
Not 'bad' so much as those who lack understanding and would rather
point, laugh and stare, or, when I was a kid, would rather punch, kick
and spit on me then get to know me. I went to public schools. I
wouldn't trade those experiences though, they taught me a height of
empathy and compassion for others I couldn't have gained had I not
gone through the surgeries, the schooling and the like.
Michelle

On 3/2/11, Mary Mc Gee <mmcatitude at gmail.com> wrote:
> Dear Fellow Federationists;
>
>             I've read with interest all the posts about experiences at
> health care providers' offices.  I have some experiences I can throw into
> the mix.
>
>             First, I'll say that, because the cause of my blindness is
> albinism, I had a unique appearance that was impossible to hide when I was
> younger.  I was a student at the Iowa Braille and Sight Saving School for
> ten years and, during that time, I went to the University of Iowa for free
> eye care-at least "they" called it eye care.  It was more on the order of
> eye study because every med student, intern, and ophthalmology resident had
> to come examines the "albinotic eye" before I received any low vision
> glasses, etc. that would actually improve what little vision I have.  I felt
> like a zoo or circus animal on display because I was a condition rather than
> a person.  It hurt a lot and I'm not simply talking about all the lights
> shining in my eyes, but also the emotional pain it caused.
>
>             As an adult I've had some doctors who have been very nice and
> some who haven't.  The number of nice ones directly correlates with my
> various degrees-all doctors and staffs are nice now that I put "Attorney" on
> their intake forms.
>
>             But, when I first came to Des Moines in 1976, visited a
> neurologist because of migraine headaches.  He spent more time looking at my
> eyes than he did taking a history of the headaches.  I went to one doctor
> whose office staff handed the intake form to my driver too complete until I
> complained.  One time, when I went to an orthopedic surgeon's office for an
> expert consult to prepare for trial, I was greatly surprised that she spent
> fifteen minutes asking about my vision instead of my client's treatment.  I
> simply told her that, if she billed for those extra minutes, she wouldn't be
> paid, because I would deduct that amount of time from my bill back to the
> client.  She didn't argue and even apologized.
>
>             I'm fortunate that I currently have a sensitive, caring group of
> physicians.  I'll have to admit, though, that the trauma of the past plus my
> attorney's skepticism is quite hard to eliminate when I meet a new one.
>
>             The Iowa Department for the Blind has been doing a PR project
> with health care providers to educate them with the hope that fewer people
> will have unpleasant experiences when they need help.
>
>             I'd be interested in hearing if any of you, like me, were
> treated as a medical oddity at any time.
> Sincerely,
>
> Mary L. McGee
>
>
>
>
>
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-- 
"FUCK YOU FOR KILLING ME!!!!" SHAUN MORGAN - "NEEDLES"
"THESE STAND FOR ME, NAME YOUR GOD AND BLEED THE FREAK!
I'D LIKE TO SEE, HOW YOU ALL WOULD BLEED FOR ME!" -LAYNE STALEY -
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