From a post on Face Book on 6/23/2016
I am 42 years old andhave just had an epiphany. I have always had LS. I have had surgeries and sprains and strains. I have struggled with pain. The interesting thing is that, although I have a disability, I have never felt disabled. I realized this at I was starting a new adventure. I have always loved acting and I am a Drama teacher. I have been out of it for a while. (Taking a break, hanging out with my son, he had some surgeries, I had some surgeries…) I found a great, professional theatre company in my area called Phamaly. They started out as a company who worked with the physically handicapped. They have since branched out and work with actors who have physical, emotional, and cognitive disabilities. I went to an audition workshop and was so anxious. I had been out of the business for some time. Would I be rusty? Also, this was the bigger concern, was I disabled enough? Isn’t that strange? I have had 4 surgeries on my left hip since 2012. I have had periods of using a walker and crutches and wheelchairs. I was in spica casts as an infant. I had constant sprains during puberty. I have no stamina. I was taken out of gym classes because the gym teachers pushed me too hard (Well she walks, why not run her around?) I have always advocated for myself. Am I disabled enough? I had to stop myself from the toddler knee-jerk reaction, when accommodations were brought up. “I don’t need any help! I can do it by myself!” The big epiphany came when I realized that I am disabled. I didn’t feel disabled because it is my normal. I have had to be flexible and have had to make my own accommodations, most of my life. How can it be a disability if you have been forced to be capable? How can it be a disability if you feel normal in your own skin? I have always been like this and I am used to this. How can that be disabled? I have never been ashamed to tell people about LS and how it effects me. How can that be disabled? I think that disabled and handicapped have a stigma. It is somehow associated with being less than. I am equal too or greater than. How can that be disabled? I am excited to start this new adventure. I hope to be cast in Phamaly productions in the future. I hope to learn and transfer knowledge to others. I am not my disability. I have a disability. Whew! Thanks for letting me vent. We all are growing and learning and I am glad to experience new things on the long road I travel. BTW – Check out the Phamaly website. They are doing some great work and are wonderful advocates for all of us!