[acb-hsp] Disability Identity

[Sharon]

Some doctors don't question things because they don't want to take the time
to think critically. I might just tell an employer that you can't stand on
things to reach high shelves and leave it there. Bet you never had it.

Sharon

 

  _____  

From: acb-hsp-bounces at acb.org [mailto:acb-hsp-bounces at acb.org] On Behalf Of
Alexis Read
Sent: Monday, March 12, 2012 10:43 AM
To: Discussion list for ACB human service professionals
Subject: [acb-hsp] Disability Identity

 

I've been thinking about something for some time now and would be interested
in others' perspectives on the issue.

 

When I was a young child, I was diagnosed as having mild cerebral palsy.
some neurologist probably examined me, saw some spacisity on my left side,
and told my mother that this was a type of cerebral palsy. For a number of
years, perhaps 4 at the most, I had physical therapy. For many years after
that, I had adapted physical education because of my visual impairment. Jane
was a fabulous APE teacher because she made the adaptations fun and subtle.
there were, of course, days when Jane had to take me out of the gym to do
something completely different, but those days were few. She tried to
include me as much as possible in the class and weave her adaptations into
the activity that the other children were doing. 

 

Sometime in mid to late childhood, I was told I have mild cerebral palsy. At
the time, I don't remember anybody truly explaining what cerebral palsy
meant, that it was a disorder of the brain contracted at or shortly after
birth and that there are 4 distinct types. I only learned the scientific
facts later. I'll admit that I still am fuzzy on some scientific details of
the condition. In fact, I had the opportunity to learn more about this in
graduate school for a report I was assigned for the medical and functional
aspects of disability class. The professor told me I may not complete that
report because, in her opinion, I wouldn't be objective enough. She claims
this because I have a diagnosis of cerebral palsy. Needless to say, I was
furious for her making that assumption. I had to trade topics with a girl
and got stuck with an incredibly boring topic, one I didn't care as much
about as cerebral palsy. Had I been given the opportunity to further
research cerebral palsy, I don't think I'd be in such a mess now.

 

When I was 10 or 11 years old, I was at a camp for blind and visually
impaired youth. One activity we did was Two Truths and a Lie. One of the
truths I told the group was that I have mild cerebral palsy. One of the
other children piped up and said, "You sound like you have cerebral palsy."
I have never been so deeply hurt by words as I was on that day in June of
1991 or 1992. Jennifer probably had no idea what she said and how deeply it
effected me. For years, and even as an adult, I wondered if my speech really
was that distinct that a non medical professional could pick up on the fact
that I have CP. I've been told time and time again that Jennifer wasn't
thinking when she uttered those life changing words, but as a young person,
that didn't help. It wasn't until my late 20's that I finally believed
someone when he or she said that my speech is normal sounding. 

 

I had a life changing surgery in 2010, a surgery that has turned everything
I've thought about myself on its head. Prior to the surgery, I had to wear
orthotics, one of which was big and visible if my pants were in the wrong
position.  Having the big orthotic did little for my self-confidence in a
professional setting. Once the orthotic was ditched in January of 2011, my
confidence increased significantly.

 

I have new issues now, issues of identity, that I've been thinking about and
pondering for a very long time. On the one hand, I keep asking myself if a
doctor has so much power that she can wipe a diagnosis off the charts. I say
this because I feel like I don't even have cerebral palsy anymore. I've
heard of children's diagnosis of mental retardation being reversed with
environmental stimulation. Why not a physical diagnosis being reversed with
surgery and the removal of braces? Another, perhaps more rational, part of
my brain kicks in though and argues that a doctor can't remove a
neurological diagnosis, especially one that may have been caused by bleeding
in infancy. It makes me wonder though if I never really even had cerebral
palsy like Dr. Quanbeck argued in 1996. Mom and I told her that I was
diagnosed with the condition years ago, and after the examination, Dr.
Quanbeck told us she doubted I ever had cerebral palsy to begin with. So,
good doctor, do tell us then why there were orthopedic problems my entire
life. I'm sure her answer to that question would have been the problems
caused by the surgery in 1984 when my left ankle overcorrected. If Dr.
Quanbeck was right and I never did have cerebral palsy, why then am I
struggling with such deep questions of identity? 

 

I no longer need to see my orthopedic doctor. Her expertise isn't in
cerebral palsy. In fact, when I told her that was one of the diagnosis given
to me as a child, she didn't even question it, not like Dr. Quanbeck. I've
never had a doctor question me when I told them that I have (had?) a
diagnosis of mild cerebral palsy. Even neurologists I've seen as an adult
don't think twice before agreeing and putting "Mild cerebral palsy" in the
chart. Do I really have mild cerebral palsy or did someone make a mistake
when I was a young child? 

 

I've been thinking about this because when I start interviewing for jobs,
I'm going to have to disclose my disability(ies) to prospective employers.
One obvious disability is the visual impairment, and I have no problems
disclosing this to anyone who asks. I'm comfortable with my visual
impairment...or I think I am. Maybe that's another set of issues that I've
hidden for years and won't come clean with. The possible cerebral palsy is
another story entirely. One obvious limitation of the condition is that I
can't stand on chairs to reach items on high shelves. We had a high cabinet
in the ATC with boxes on the top shelf. Whenever I needed a box, I'd have to
find someone to reach it for me. Chris was always happy to reach the item on
a high shelf. That's not the issue. What I keep questioning is whether I
even have the condition anymore or whether Judy, with her magic scalpol,
removed it completely from my body. Now that I don't have braces anymore, no
one would ever know, not unless they are observant physicians. 

 

I'm not really even sure where this is even going. I'd be interested in any
thoughts anyone might have regarding this topic.

 

Alexis

-------------- next part --------------
An HTML attachment was scrubbed...
URL: <http://www.acb.org/pipermail/acb-hsp/attachments/20120312/ac1648d4/attachment.html>