Demonizing Disability

July 8, 2010

Decades ago, my physician father, in his characteristic low-key way, confronted a man who made it a habit of trespassing on our little stretch of private beach. My old man had multiple sclerosis and hobbled up to the man to talk. The only raised voice came from the interloper as he snarled, “You are as sick in your head as you are in your body.” I was not around, but when I heard about the incident I ached for my father. How could one speak that way to another?

That memory came roaring back when I read Jennifer Bartlett’s recent essay in The New York Times. She wrote about negotiating the city as a woman with cerebral palsy. Bartlett travels on public transportation with the rest of humanity, despite a self-described “awkward gait” and slurred speech.

This poet and professor is married and has an able-bodied husband and child. But she lives in daily dread of what strangers are going to say to her. She recounts being called “mentally backward” as she sat reading James Joyce on a bus. She also recounts sitting in restaurants with various friends who routinely are asked by waitresses what she wants to eat.

I once entered a house of worship, leaning heavily on my cane, waiting as my wife, Meredith, parked the car. Ushers were everywhere and eyed me, but no one approached. When Meredith walked in, an usher immediately came over and asked her where I wanted to sit. On other occasions, people have inexplicably raised their voices as they addressed me, as if I can’t hear them speak in a normal tone of voice.

Often I am unsteady on my feet. My speech slurs when I am tired. Before it was common knowledge in my neighborhood that I had MS, people used to eye me with suspicion. Cops in our village would follow me up the hill from the train in the evening. When I started using a cane, the citizenry breathed sighs of relief. One told Meredith she was relieved that I only had MS. She thought I had a drinking problem.

There is a segment of the population that is cruel. Period. Bartlett writes about once being asked to dance. When the man heard her voice, he commented to his friend, “She’s some kind of retard,” and walked off. It was as if she could not hear.

Dr. Roberta Jaeger, a New York psychiatrist, says that kind of antisocial behavior can go back to childhood. “What I find of particular interest is that phase of childhood/adolescence when kids revel in being mean by imitating, teasing, and being downright cruel to those who are different, including the disabled. I think most people can recall with embarrassment some episode of actively or passively contributing to another’s unhappiness.”

Does it ever stop hurting? I asked Bartlett. “Yes,” she e-mailed, “depending on the situation,” suggesting that sometimes remarks can go in one ear and out the other.

More common than outright cruelty are thoughtless remarks from individuals who mean no particular insult—such as those who “helpfully” assume that disabled people can’t speak for themselves. I write that off to discomfort and a complex set of fear and emotions. We live in a culture that celebrates beauty and physical perfection. Just look at the magazines at the checkout line of your supermarket. Beautiful people are splashed across the silver screen. I think people don’t want to see those of us who are physically imperfect, never mind deal with us.

And so we create stereotypes and ostracize those who fit them. According to Dr. Melissa Frumin, a Boston psychiatrist, “When we are cruel and dehumanize a disabled person, we try to separate ourselves from that disability.’ ”

As we age, we see our contemporaries get hit with chronic conditions. I think we are scared for ourselves, scared that those same disabilities could affect us. We are not at peace with possibility. So we cling to the cover of People and the images of the successful starlet and pretend that is who we are.

Many of us are in for a rude awakening.