Most people close to me know that in the last few months I have been working on my first book. It has been a true labor of love because the information within it is what I am sincerely passionate about. This journey has been full of frustration, laughter, tears and even a moment or two of wondering if it is all worth it.
More doubts have crept in as well. Will people understand what I am trying to say? Will they take me seriously? Will other people with disabilities think I have no clue what I am talking about? The answers to all of those questions might not be ones I want to hear. It has taken me awhile to understand that this is my book. It is full of my ideas and opinions as a person who has lived with various disabling conditions all my life. That is all it is.
One of the best things about writing this book has been the feedback I have gotten from other people. Turns out that things that make perfect sense in my head can be confusing when other people read them on paper. Or something that I considered to be a complete thought turns out not to be.
One such issue was pointed out to me recently. My friend and former co-worker, Terry, graciously accepted my request to read a draft. One of the things I say pretty early is that I believe everyone has a disability. Some are seen and others are invisible. Some are a minor hindrance and some are more severe. When Terry read those paragraphs in the book, his comment was something like this:
“You say that you believe everyone has a disability. What if nobody does? I am more inclined to believe the title of this book, “More the Same than Different” if there was the premise that nobody has a “disability” and we were all equal.”
Isn’t that an interesting idea? It is not a concept I’ve ever considered before.
I’ve had a friend tell me in the past that her “disability” was that she was painfully shy. She knew it didn’t fit the definition of disability in the traditional sense. She was not going to qualify for disability payments from the government because she felt nauseous when she was around strangers. But her shyness disrupted her life to the point that it caused her to miss out on things that she wanted to do. She considered it a disability. Does it matter if anybody else did?
And what about a guy I saw featured on Ellen a few months back. He loved to ski and was paralyzed when he ran into a tree in a freak accident while going down a hill. He now uses a sip and puff feature on a power wheelchair for mobility. According to him, he simply navigates the world a little differently than he used to. And because he still has fun, his injury is not a big deal.
Does it matter that many people observing him would say he has a disability if he doesn’t happen to see it that way?
I have turned this issue over in my head from a number of angles in the last few days. And to me, nothing about it is as simple as it seems. I’m still fascinated.
Who gets to define disability? And what one person may consider a disability may not be a disability to someone else in the same circumstances. For some things, like qualifying for various needed benefits, society’s definition or perception of disability is important. In other cases, a personal definition of what is or is not a disability is the only thing that counts. It seems to me that, for the most part, it is all individual.
Do you have a disability? Does it matter?