What has disability done for you? I don’t mean the usual things like, ‘I’ve learned so much’ or ‘who knew that people with disabilities are so interesting, or beautiful or insert whatever meaningful statement you’ve learned to tell others.’ Don’t get me wrong, there are many worth things that I’ve learned as a parent of a child with special needs but there’s a lot that I would have rather not learned.
Even so, disability has meant meeting wonderful teachers, therapists, social workers and just plain warm-hearted people who’ve been open and loving with us and Akiva from the beginning. Disability has meant new experiences and a different outlook on the world – on development, on handicapped accessible, on life lived at a different pace.
Disability has meant understanding what it means to be in a wheelchair, or using adaptive equipment of any sort, or the struggles to cope in a world not designed for people with any kind of disability.
What words come to mind when you think of the word disabled? How do you react to the idea of incapacity or deficiency or in the terms of the American Heritage Dictionary, “A disadvantage or deficiency, especially a physical or mental impairment that interferes with or prevents normal achievement in a particular area.”
As parent to a child with a definite label, I’ve had to adjust to a title – Down syndrome – since he was an infant. Not just DS, but all the words that went with it – retarded, mentally challenged, developmentally delayed, mongoloid, slow – in addition to the question always asked, ‘what’s his functioning level?’ What’s always been of interest to me is that just saying a person is disabled doesn’t quite cut it. Either does special needs. People are curious. They want to know. Some even want to understand. As parents or people with disabilities, we may not always want to answer and appease their curiosity but we are ambassadors for disability and difference. Embrace it.
By Beth Steinberg, Shutaf Co-Founder