A reader writes to me, recounting a painfully awkward moment she witnesses at a family recreation center.
Two youngsters and their parent are staring at a teen whose face is startlingly different. The parent of the teen delivers a loud, indignant scolding to the gawking family. The offending parent cradles his two children, murmurs “sorry” and slinks away.
Later, my reader investigates. The teen’s face is disfigured by Treacher Collins syndrome, otherwise known as mandibulofacial dysostosis. It is a rare congenital disorder, found in about 1 in 50,000 births.
I know a published novelist. She is my friend. She is brilliant. A birth accident left her with cerebral palsy. Her speech is difficult to understand. Although she can ambulate, her gait is awkward. The motor skills of her arms and hands are functional, but impaired.
But, cognitively, she’s perfect. She is a perfectly normal human being trapped in a disabled body.
And over and over again, she tells me, she is mistaken for someone with severe developmental disabilities. Well-meaning but ignorant people patronize her, speaking to her in the slow, sing-song condescension used to address toddlers. People “baby” her. This drives my friend crazy. She really hates it.
Recently, I made the acquaintance of a bright and beautiful young woman who is absent one leg, just above the knee. As we are introduced, I notice that I notice this. How could I not notice? She is on crutches.
Now I notice that I am pretending not to notice. I’m “filing away” what my eyes find so distinct and apparent in favor of learned decorum.
In the first moments of our dialogue, and much to my relief, the young woman tells me she was born with a genetic disorder called neurofibromatosis. Random tumors grow on nerves, threatening bone development and every organ system in the human body. NF cost the young woman her leg.
As I get to know this woman better, she begins to trust me with stories of strangers and passers-by who stare. Folks who blurt out, absent rapport or even segue, “What happened to your leg?”
She tells me that, depending on her mood, she might answer in any number of ways, including “Shark attack,” or “I left it at home.”
Almost as a confessional, I find myself telling her about seeing the film “The Elephant Man” (1980).
I bought a ticket to the movie utterly ignorant of the plot. I did not know Joseph Merrick (1862-90) was an actual person. I had never heard of Proteus syndrome. I did not know the movie makers had painstakingly replicated Merrick’s shocking deformities from existing photographs and Merrick’s preserved skeleton which was donated to the Royal London Hospital.
When the camera first fell full on Merrick’s character, my reaction was physical.
Parasympathetic. A wave of nausea. Horror. Disbelief. Something akin to fear.
Then guilt. Then, as the film slowly helped me get to know the man, everything shifted to empathy. By the time Merrick confronts the ignorant mob with the movie’s signature line (“I am NOT an animal! I am a human being!”), I started to notice that I was not noticing Merrick’s disability.
I was relating to the man.
When I stack these stories side by side, I notice I feel not one but two pulls of empathy.
First, empathy for those with severe disabilities. The ones you can’t not notice. With all respect for the burden, the limitations and daily consequences of the disability itself, what must it be like to be so often reduced to a disability? To have to constantly defend oneself, to explain oneself against the onslaught of such a one-dimensional identity?
“I am MORE than my disability! I am a human being!”
But, also, empathy for otherwise loving and kind human beings who are suddenly shocked and startled by what they don’t understand. Our brains evolved to gaze upon and inquire after what we don’t understand until we can figure out what we are seeing.
And, for those of us with well-developed empathy, we WANT to understand precisely so that we can mobilize empathy and advocacy.
It’s an awkward tension. On the one hand, I am helped past the temptation to one-dimensional identifiers when I can understand what it is that I am seeing. On the other hand, I can hardly expect my new friend to wear a T-shirt that says, “You can stop staring now. It’s called neurofibromatosis.”
I understand how disabled people become embittered. And I’m therefore all the more admiring of disabled people who can muddle through the world’s ignorance and awkwardness with aplomb, patience and mercy.
Steven Kalas is a behavioral health consultant and counselor at Las Vegas Psychiatry and the author of “Human Matters: Wise and Witty Counsel on Relationships, Parenting, Grief and Doing the Right Thing” (Stephens Press). His columns appear on Sundays. Contact him at 702-227-4165 or skalas@reviewjournal.com.
