Tag: ableism

Pride

A diverse group of smiling people, including a woman in a wheelchair, a guide dog, and others, pose together in front of a colorful striped background.
~ Linda Wright

July is Disability Pride Month and I  have been thinking a lot about a poem Laura Hershey wrote in 1971 entitled “You Get Proud By Practicing.” It is one of my favorite poems. 

I’ve had more than seventy-five years to practice being proud. When I was a child I was the only one in my age group who had to go to the doctor for treatment if I fell down and scraped a knee. I was the only one who had to go to the emergency room for a nose bleed. By the time I was a teen, I didn’t know anyone else who had to see an orthopedic surgeon. Many adults and even other children focused on what I couldn’t do rather than what I could.

I wasn’t proud yet, but I also wasn’t ashamed or embarrassed by my disability. The over culture, or the attitude of the dominant culture, is one of ableism. It is learned at a young age. I knew that most people saw me as less than “normal.” The truth is that more than one in four adults in the United States have a disability. That sounds pretty normal to me.

When I finally met another teen in the early 1960’s who had a bleeding disorder, I believed I was lucky to be a girl. My new friend was a boy with hemophilia. In order for his father to be proud of him he had to play hockey. The battering his body took trying to make his father proud of him left joint injuries that could not heal. He needed a total knee replacement before he turned fifteen. 

It took years of practice before I could feel pride in my abilities. My disabilities have increased with age but I am no longer the only one in my age group who has a disability. I don’t feel like the odd one out anymore, but I don’t see many of my peers feeling proud. In fact many have internalized ableism, trying to deny their disabilities or cover them up in order to feel good about who they are.

They haven’t learned as Laura Hershey says:

 “You do not need
to be able to walk, or see, or hear,
or use big, complicated words,
or do any of the things that you just can’t do
to be proud.”

It’s not easy being alien

~ Linda Wright

One of my recurring fantasies as a teenager was being rescued by an alien space ship and taken to another planet where all of the inhabitants were like me, in that they had blood that would not clot. Bacteria that were killing anyone who had blood that would clot had infected Earth, in this fantasy. And so, there were only a few of us who had survived.

It was a mean-spirited fantasy, because the virus struck all the members of my family as well as my friends. The imaginary story, I believe, grew out of responding to too many people asking me if I would die from a cut on my finger, too many relatives giving me hugs and then exclaiming that they were overjoyed to see me still alive, and too many medical professionals telling me (or my parents) that I would not live long enough to become an adult. These reactions to my bleeding disorder didn’t make me timid or afraid; they made me angry.

The unwanted pity I received for not being allowed to ride a bicycle like others my age; the senseless praise I received for being brave, when it did not appear I had a choice, left me feeling set apart. The reality was that I was often lonely even when surrounded by friends and family. My most comfortable friendships were formed with children who either were hospitalized themselves or had gone through a long rehabilitation period for a major illness or injury. Those children understood the humor and the absurdity that I experienced. None of us seemed to feel sorry for one another or afraid of the judgments made upon our expected life spans.

When I was 12 years old, I had an internal bleeding episode that resulted in exploratory surgery requiring multiple transfusions and a lengthy hospitalization. In the children’s ward of the small city hospital, I met a boy who had deep tissue burns over much of his face and body. He had thrown an aerosol can into a campfire just to see what would happen. Patrick had already undergone many reconstructive surgeries and had been in the hospital for many weeks when I arrived. I wasn’t horrified, as so many others were, by the look of Patrick’s scarred and disfigured face. Neither did he back away from the I.V. pole that was my dancing partner. In the next few weeks to come, we formed an alliance. We raced wheelchairs down the hall to see how many nurses we could enrage and played countless practical jokes on unsuspecting doctors. I believe now, we were daring them to see us only as children — not to alienate us by calling us suffering, wounded, or courageous.