I remember the first few years I was in school being an incredibly angry time for me. The school tested me and though I was exceptionally bright mentally, they did not want to believe it was true. The tests had to be lying because back in the 1980s if you had a muscle disease you probably were mentally slow, as well.
From the moment I entered the public education system, I had to fight for my rights. The teachers either went out of their way to make the classroom productive despite my special physical needs or tried to deny I had any special needs at all. The latter would punish me for being slow when walking down the hall and having to get out of class for physical therapy once a week.
The kids noticed my limp and it was common to hear the chants of, duck, duck, duck, as I walked down the hall. That is what they called me because my limp resembled a duck’s waddle. I would try to ignore it or say something witty to deflect from the situation, but in truth, I remember feeling very sad. I kept asking, “Why can’t I be normal?”
At ten, I started taking voice lessons. By this point, I was in advanced classes and had tested into the gifted group at school. It was very satisfying to do so because I had been told I was not intelligent and possibly mentally retarded by more than one school employee. I think this made me work even harder to prove how smart I was.
From 10 until 15, I spent my days partly at school and partly touring my state as a representative for a major disability organization. My afternoons and evenings were spent taking acting and singing lessons and classes. I had a natural charm that won people over. I think this is why I represented both my local area and the entire state of Ohio as their ambassador for the disability organization. I was quite profitable to them.
I must admit I loved the attention though. I was a natural performer. I was on the radio both speaking and singing hundreds of times. I sang and spoke on television, did photo shoots, had a chance to model for a local company, and did television spot ads. It was the dream of a lifetime, and something that helped me grow and become comfortable in front of a camera.
Article comments
1 - Pekky Marquez
I am about to do an Internship in a Protection and Advocacy agency, and I want to thank you for this, for I find it trully inspiring and a guideline for me as well as for explaining others about the self-determination and "normal" (what is normal and who determines it anyway?) life of people with disabilities.
I have been interested a lot on what people have to say about self-determination, which is why I thank you for your article. Trully human. :)
Peace!
Pekky
2 - Snarkattack
Bloody inspiring, your article - thank you for sharing. I would do well to remember your situation next time I start complaining about my own (less severe) affliction. It sounds like you have achieved loads more than some of your healthier peers.
I'm with you on the education of others - that is one of the reasons that I'm open about my sickness. It's a bit different in that it's psychological but on occasion people do ask me some stupid things, or I might have to explain why going out in public isn't an option at certain times. Thank goodness for understanding friends and family.
3 - diana hartman
I am pleased to tell you this article is being featured in the Culture Focus today, August 15.
Diana Hartman
Culture Editor
4 - Dominick Evans
Thank you all for your kind words and for featuring this article. I feel it is incredibly important to helping to combat discrimination and facilitating understanding and discussion.
I am working on the second installment of this series so expect it to be available soon!