[acb-hsp] Disability Identity

[Alexis Read]

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
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