Really, it’s true. I can not be cured. I was born with my disability and I am going to die with my disability. My disability does not define me, but is simply part of who I am. I will never recover from it. Throughout my life I am going to require different supportive services. When I was born, my disability did not cause any issues in my life. By the time I was a teen I needed to use crutches on occasion. In my twenties I need to brace specific joints to keep them in place. At the age of thirty I purchased my first wheelchair. In 2001 I found out that I was loosing my hearing. I started to learn sign language so that I could return to college and successfully complete my bachelor’s degree. What the future holds is a mystery to me. Will I need more adaptive equipment, a power chair or a personal care attendant? I have no clue. I can tell you with certainty that this situation is not unique to me. These are the stories shared by the thousands of people who have developmental disabilities. It is a story that does not fit into the current “recovery model” of Mental Health Reform. It does not fit neatly in a box.
People with developmental disabilities have been forced, since Developmental Disabilities/Mental Health/Substance Abuse Services Reform, to try and fit into a "recovery model" that ignores their individual needs. Children with developmental disabilities require early intervention services that will maximize their individual strengths and provide a strong base for a child to acquire independent living skills. Early intervention increases the potential for a future high quality of life. During the most formative school years, children with developmental disabilities deserve an equitable education. Adults with developmental disabilities need to have access to services that both increase independence and provide support where it is needed.
We do not need to "recover" from our disability. We do not need to be cured. It is a part of who we are.
Want more information:
Ehlers-Danlos National Foundation, http://www.ednf.org/