Define Me … If You Dare!

“So, do you have MS or Parkinson’s?”

I glance over at the woman who I am helping. I straighten up from bending over a change machine, trying to coax a stubborn, bedraggled dollar bill into the feeder for the fifth time. My hands slightly tremble from frustration and my disability. There are happy, chatting children around us so I raise my voice just a bit to answer, “No. I have a mild form of cerebral palsy.”

She smiles. “Oh, and what do you contribute to the fact that you are doing so well?”

What a pleasant question. Folks often don’t ask questions of me and my disability. I am sure there are several reasons why. But I honestly don’t mind talking about it. The disability has shaped my life just the way being an only child has or being a writer.

“Well, I did have lots of physical therapy as a child.” In addition, I was taught to type on a big, fat, electronic blue typewriter—before there were computers— when I was nine years old. I was also in Special Olympics, Special Education for both second and third grades and adaptive P.E. But I don’t give all of those details. TMI for a stranger.

The woman, probably in her 60s with obviously colored hair and an angelic face, responds, “I hope you know God can save you.”

Angelic, my ass.

As I helped her complete her transaction, I just nodded and “hmmm”ed a lot as she continued to tell me that God could save me and that she would pray for me. I don’t ever recall the need throughout my life to be “saved.”

After this incident, I recalled one many years ago, probably in my early 20s, where I was explaining to a new acquaintance about my disability. She told me, point blank, “You’re not disabled. You’re not in a wheelchair.” So I had no right to use such a word as disability to talk about myself.

Another incident. Also in my 20s. I went to a non-profit organization to get career assessment guidance. The career guidance counselor’s stellar advice? Tell any prospective employers that I had a disability as soon as I talked to them because my voice “made me sound retarded.” (Note, I learned later on as I was researching a college paper about the Americans with Disabilities Act that the counselor’s advice was pretty much the wrong thing to do.)

Finally, I was doing group work in college and one day the group members started talking about life goals, desires, wishes, etc. I shared that at a young age I really wanted to be a dancer. It took many years and some hard knocks, but I accepted that I would never be a dancer. The CP disturbs my balance and muscle control thereby interrupting any graceful pirouette or a quick two-step. When a girl in the group who happened to be in a wheelchair shared her life dreams, she was sure to look directly at me when she said, “And I can do anything I want to. Nothing stops me!”

What, is this a competition?

After college graduation, I decided I was going to write a romance novel. A friend of mine got me hooked on reading the genre and she later commented that I should write one. Sure! Why not? Piece of cake…

Not!

My heroine had a spinal cord injury and so I spent years doing research, asking questions, fine tuning her background. I also researched the genre and writing itself. In the process, an early draft was sent to an editor who had a very interesting response.

I’m truly sorry to disagree. But no one mocks people in wheelchairs. My sister contracted polio at the age of 5. She went from a wheelchair to crutches to leg braces. No one mocked her, especially her classmates.

Great. That is a lovely story and it’s great to know bullying and harassment was not a factor in this person’s life. But that does not cover every person’s life. It was a factor in my character’s life—and mine—so to downplay it, to define it by someone else’s life, is wrong. In 2005 I published The Butterfly’s Dance, bullying teens and all!

After almost 40 years and many more stories like the ones above, I have learned that I have to make my own definition. I live in this body; I know when I have good days and bad days. A task can be easy for me one day and difficult the next. I have learned there are just some things I have to ask help with to do. And my dreams have morphed into others. I have been to college, had a couple of jobs, been a supervisor, written dozens of freelance articles and a couple of self-published novels. I have to accumulate all the data from these varying experiences and use them to define myself. Otherwise, others will do it for me.

All you writers out there, keep this in mind. Disability can be defined by a quick search on Google. There can be a number of websites that give definitions and examples of a myriad of disabilities and medical issues. And after finding all that data, mostly forget it. Because creating a character with a disability begins with the person. Define your character first. I dare ya!