"I did not want to be associated with anything, or anybody, that had to do with disability.

"I would not align myself with the losing team."







by Tammy S. Thompson



 woman escaping

Escape from Shame

woman escaping


Escape isn't a straight shot and it doesn't always mean freedom. I've tried all my life to escape both to and from things that I feel but cannot see.
I spent the first few months of my life in an incubator without the comfort of human touch. I was born three months before I was due, weighing two pounds and twelve ounces.
The upside: medical technology saved my life.
The downside: my retinas were damaged from receiving too much oxygen. I became legally blind. At the time, the doctors suspected hydrocephalus, but they didn't diagnose it until it almost killed me in my sophomore year of college.

I've spent many years on a mission to cancel out my disability by frantically stacking up achievements, hoping that someday I would find that final, magic accomplishment which would absolve me of the sin of being disabled.
Loneliness and longing for fulfillment have been the constant threads in my life, motivating countless escape attempts.
I guess I thought that if I were successful enough, I'd escape from the "less than" feeling that quivers in my guts. I've felt that my disability is a debt to others that I could never be powerful enough to repay -- that no matter how good I am, I will always need others to do things for me that I cannot do for myself.
No matter what I did, I collided with that hard fact. I couldn't seem to accept it and carry on without shame. Then one day, riding the bus, I met a fellow with a disability who was proud. He was comfortable with himself and his disability. Disability pride -- wasn't that an oxymoron? I had to find out, so I got involved in the independent living movement he told me about.
Participating in the Center for Disability Leadership program brought me up to speed and launched me into the disability rights movement. My life and my thinking were liberated. I got connected with powerful, wonderful people who were also disabled. These disability warriors taught me a new way to live that frees me from my past.

When I was four years old, I remember boarding a blue van in the dark of early morning to travel to a school for handicapped children. Lucky for me, I had a fierce desire to attend kindergarten with my childhood buddy, Parry. My parents advocated for me to have that opportunity. I shudder to think what my life wouldn't be if I had been relegated to the land of low expectations.

I learned early that being different is painful. I became a master at hiding my disability. I did not avail myself of some visual aids because they drew attention to my differentness. I went to extraordinary lengths to be the same as everyone else. I could never fully pull it off. Sometimes I wasn't included in daily activities because I was different, but, ultimately, I chose to withdraw to avoid the feelings of awkwardness and shame that rose up inside me.
Recess and gym class made me want to disappear and die. I couldn't see the jump rope or the soccer ball. If I played, I heard whispers and laughter, or the thick silence that goes along with an exchange of looks between kids. I can see color well, so I "see" by guessing what things are by shape, color and sound. I don't see faces unless they're at kissing distance. So I couldn't see those looks but I knew what they were saying. I began to hate my body, then physical activity, and finally myself.
I remember boys telling me they liked me, then laughing at me when I believed them. I learned to be syrupy sweet so that people would like me. To win friends, I anticipated the needs of others and ignored my own. If I were nice enough, someone might like me, love me, protect me. Just now I am beginning to realize how much this "coping skill" has cost me and others.

I found temporary relief by escaping. Food, music, alcohol, and geographical cures worked for a little while. Food still soothes me in the empty places and music is an expressive friend; alcohol cut the edge and evened the playing field -- until I crashed and burned. My geographical cures gave me hope that life would be better somewhere else.
But none of these things can protect me or give me the comfort and freedom I crave. I need people in my life who love me and accept me.
Eighteen months ago, before I learned about the disability rights movement, I did not want to be associated with anything, or anybody, that had to do with disability. I would not align myself with the losing team or the stereotypes I tried so hard to defy. Today my friends in the movement are teaching me how to accept my disability and carry myself with pride.
I am finding out that the ways I've learned to protect myself actually separate me from other people. Trying to appear non-disabled is a lot of work and it keeps me ashamed and alone. I've been disabled all my life, yet I have little idea of how to trust and include others in my life -- let alone ask for help when I need it.

The grand paradox in all this is that my efforts to "overcome" my disability have made me "too capable to be disabled" and still unable to pass for non-disabled. I can't win if I don't fit anywhere.
Today I strive to accept and honor who and what I am. I have friends who teach me how to live my life instead of defending it. I escape the chains that bind me by living a 12-step program, participating in weekly therapy sessions, and building relationships with my fellow patriots in the disability rights movement as we make social change.
In working to free our people, I free myself.


This article appeared in Mouth #43, the Escape issue, in July 1997. Go to our store to buy that issue.

Tammy Thompson lives and works in Holland, Michigan.




To read an antidote to shame, click here.

For more about shame, read a recent article by Josie Byzek in Ragged Edge. It's causing quite a stir.