News & Advocacy in Disability Rights

Rhapsody for a new niece

By William G. Stothers

I was listening this morning to an old Van Cliburn recording of Rachmaninoff's Rhapsody on a Theme of Paganini. This work, lush and romantic, continues to affect me. I remember the first time I heard it: I was at camp -- crippled kids' camp. I was 15 and feeling too sophisticated to participate in camp activities such as archery or making a hokey wallet in leather crafts. I felt above and beyond all the other kids. The only camper I thought I could talk to was Jerry, a boy my age, who was pretty "normal;" he had been run over by a bus.

The two of us got lucky. Jerry came down with the mumps and was put in isolation in the camp's lodge. I had had the mumps so I was allowed to hang out with him and keep him company. Neither of us had to play those silly camp games. We played cards and board games and listened to music. That's when I met Rachmaninoff and Paganini.

Today I am embarrassed at the memory of my attitudes toward my fellow campers. They were having fun while we were being snobbish and contrary; my "favorite" word was "miserable." Perhaps I was just being a teenager, but I really felt I was different from and better than those crippled kids.

I don't feel so different or better any longer. I spend too much time with people with disabilities not to see them as individuals no different from me. It was a humbling learning over the years.

One of my most recent experiences has been to welcome a new member of our family, a niece born a few weeks ago. She has a disability. As I visited her in the hospital and watched the multitude of tubes and lines send signals to a glowing monitor above her tiny body, I was overwhelmed with love and a sense of protectiveness. I am happy that she has been born into a strong and loving family; probably more than other children, she will need her family's support as she grows up.

The world into which this child will grow up is still a tough one for a person with a disability. It is more accessible today than it was when I attended that camp many years ago. For most of the kids there, the future held little promise. Access received little attention, except perhaps for institutions that became home for many. Public buildings were accessible only by accident, not design. There were no curb cuts. My friend Jerry and I were exceptions who got pushed into mainstream education and jobs.

The future is brighter today. More and more kids are making their way into mainstream education and jobs. Not nearly enough, for certain. But we are moving in the right direction.

One of the major roadblocks continues to be the entrenched patchwork of federal and state regulations that confine persons with disabilities even as they urge us to "be all that we can be."

It is easy to tell people to be self-reliant and do it on their own like the pioneers who made this country great. For most persons with a disability, that kind of independence is not even a dream; "life, liberty and the pursuit of happiness" rings hollow. We often need help and support to just function in society. For example, many persons with disabilities could live on their own with adequate personal assistance services. Many could even work, given personal assistance services and health insurance. But without reform of the regulations, these goals will remain elusive.

This lingering contradiction between words and actions reflects the deep-seated feelings of fear and anxiety that many non-disabled people hold about disability. Even as a kid with a disability I felt that about those other kids at camp. Those feelings can change. We have to work at it, those of us with disabilities and those without. It seems like the chicken and the egg sometimes. Living, working and playing in integrated settings tends to reduce anxieties, but the fear obstructs getting to that integrated state in the first place. It is happening, however þ slowly, one person at a time.

What strikes me is the strength of the people in our community. In the face of continuing discrimination, persons with disabilities do not flinch from the struggle to nail down our right to equal access, equal opportunity.

I am hopeful that we will pick up the pace. When I look upon my new little niece, who now is at home with her parents and sister, I am also filled with determination to work as hard as I can to ensure that this society is a better place, more welcoming to her and all the rest of us with disabilities. Now that would be a real rhapsody.

William G. Stothers is Editor of MAINSTREAM.

William G. Stothers is editor of MAINSTREAM.

What's your opinion?

Back to the MAINSTREAM Home Page