(19th Entry) Reality

I wish I could tell you that there’s any easy way to “deal” with the issue of disability… It’s strange… as I write I wonder if some people really do think it’s easy. If so, this blog probably isn’t for them. I remember back when I had my non-profit organization, D.O.E.S. in Texas. I wanted to conduct support groups for disabled individuals. Many of the disabled individual’s said, why should I sit around and talk about my disability… I live with it every day. On the other hand, caregivers, family members, etc. were much more eager to have some place to go to talk about the issues they were facing. Why is this?

Maybe a simple reason is… It’s seems easier to be the person going through “something” than the person around “something”. Or maybe the people around disabled individuals see the potential, the pain, and the struggle to a greater degree and feel helpless to a greater degree than the person going “through” the issues. Thus they have a greater need to express their feelings. The reality is… the issue affects everyone around and it affects all of us in different ways to greater or lesser degrees.

How do we “work through” the issues? I’ve said that a disability is anything that keeps us from doing or trying or feeling good about ourselves... a very broad definition! And… I don’t think there’s a magical answer, a quick fix, to working through the issues.

What does it mean to “deal with” or “work through” the issue of disability? For me, it’s definitely been a process. It’s not a linear process. I wasn’t just born the way that I was born and life went on. With me growing up there were doctor visits, operations, many decisions to be made as well as just the normal growing process that brought there own issues. It’s easy to get stuck in just the survival mode or in this case what Maslow called the biological and physiological needs.

When I was born in 1960, the doctor’s told my parents I wouldn’t live, obviously I did so then they told my parents I would never talk or walk. Well, I’ve done all three... lived, talked and walked! What’s next?

People have asked me many times… How did you learn to…? An example… How did you learn how to tie your shoe? Simple answer… I watched someone else and I learned how to adapt it to myself. You put one lace under the other…. And at the end you pull.

A little story… I honestly don’t know if this story is true or not, but what I do know about stories is that they have a deeper meaning sometimes or the essence is true. In a previous blog I mentioned going to Scottish Rites Hospital in Dallas. I had artificial arms. The doctors felt that it was important for me to have the opportunity to try them out. According to the stories around my family (because I was very young at the time) is that I only wore them when I was at the hospital. I didn’t wear them at home or have any inclination to try much with them. I even have memories of taking them off before I reached the door and flinging over my shoulder on the way out of the hospital.

Story: My story in my head… One day they’re trying to make me, teach me to tie my shoe with the artificial arms. I get extremely frustrated, take them off and tie my shoe without them. My Mom remarks, “I guess he doesn’t need them!” As I said, I don’t know if this is a true (factual) story or not. But somewhere early on I did quit using them and having to go to physical therapy 3 times a week.

Now this could have actually been an incident when they were trying to get me to use the artificial arms to open cabinets and drawers, etc. They had made a big wooden board full of all different types of handles, drawer pulls, etc. just for me. Or the story in my head could be total fiction! Maybe when my Mom, my Dad or my Brother reads this entry they’ll make a comment and we can hear their memories.

Bottom Line: The myth is real. At least for me… the myth is real.

Side Note: I did wear them for show and tell when I went to kindergarten and 1st grade. They were great for pinching the other kids. I wore them one year for Halloween in college. I had a hospital gown, etc. Many years later I wore them again for Halloween. This time I wore an Army jacket and had a cardboard sign that said "Disabled Vet... Need Money" I offended someone who had been in the military... I felt bad and apologized. That was not my intention at all. Even being disabled there are limits to what you can say and do, even if you think you're only making fun of yourself or trying to get others to feel comfortable with the issue of disability.

Questions for future blogs: Why are myths important? What do they tell us about ourselves?