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How have you chosen to define yourself? Why?
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Name: Sandy Goodwick
Email: sandygo4it@earthlink.net
Date: 08 Apr 1999
Time: 06:40:17
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When I was little, I had absolutely NO idea of where I 'fit in'. I could walk, see and hear ... but I couldn't smile or show any facial expression. My childhood logic then told me, 'no, you're not disabled.' But when I went to school, I was teased, isolated and socially rejected; I felt like I was a pariah. I had no way of knowing whether this rejection was a result of my facial paralysis (Moebius syndrome) or my being so different. (Back then, I didn't even know 'it' was a medical condition, because NO ONE WOULD TALK ABOUT IT.
When I turned 13, I went to a neurology clinic. My parents had been told that when my head reaches adult size, there might be something that can be done to create a smile. This was in the era of Ben Casey, Joe Gannon and Dr. Kildare -- all of whom solved seemingly complex medical issues in the span of less than an hour. How could I expect less? After having been poked and prodded, I waited anxiously -- for I just KNEW they intuitively knew how I felt, because They Were Doctors.
They blandly looked at me and simply said, "There's nothing we can do for you." The doctors didn't realize it, of course, but they also "said" to me 'you are SO WEIRD THAT WE DON'T EVEN HAVE A NAME FOR WHAT YOU HAVE!!!' and 'Take our attitudes ... this ain't nothing you should have any feelings about ... do we look upset?'
That clinched it for me. In my eyes, I didn't have a disability. I just was weird or different. I just stuffed all those feelings from long-ago even deeper. The first 22 years of my life were a virtual 'vacuum'. I knew absolutely nothing about why I had no facial expression. I also had club feet; they seemed trivial by comparison.
I became a teacher. I wanted to 'undo' the experiences I went through by becoming the best and most caring the Earth had ever seen.
Teaching had occupied my life for a long time, and I thought all those old feelings were 'licked'. But they kept grawing at me, especially whenever I felt awkward for not having any facial expression. Gradually, they struck a nerve -- and I began to deal with depression as well.
By 1991, I had truly 'been there and back' with depression, which (according to the medical doctors) had absolutely nothing to do with Moebius. One day during the summer, I learned about a support network for people with facial disfigurements. I wondered if they would consider Moebius a 'facial disfigurement', so I gave them (AboutFace, in Toronto, Canada) a call.
Not only did they know of Moebius syndrome, they could connect me with others who had it! Within a few weeks, I had gathered 5 people with Moebius together -- a first! I learned that others felt like me, and I finally began to understand that I, too, could fit within the group of people who have disabilities.
For me, saying 'I have a disability' allows me to have a direct connection with many others all around the world. While our stories are all different (and individual struggles very real), together we weave a tapestry of strength for the world. I am not ashamed of who I am. Having Moebius syndrome HAS given me hard-won insight into what it means to have a difference.
I started out teaching 'regular' kids without disabilities. As time wore on, I began to see that my heart went out to find answers for children in schools who were experiencing difficulties. Several years ago, I went into special education full-time.
I KNOW my personal experiences provides a much needed vantage point from which to educate children with differences. I only wish that I could bottle up everyone's strength, wisdom and insight as each person individually learned to live with his or her difference ... and impart that wisdom on our special education programs.
Those who develop special education programs need to realize that they are ignoring a vast resource of knowledge -- those of us who have disabilities and can provide invaluable information (re: working with children who have disabilites). I think, however, that many are reluctant to give up their 'research' (written, researched and analyzed most likely by people who "study us" rather than ARE us) in order to listen to our corporate experience.
I think they would be truly humbled by our strength!
Copyright © 1999 Sandy Goodwick. All rights reserved.
(Also see Wearing Two Hats by Sandy Goodwick.)
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