44. Misunderstood

Lately, there have been many celebrities and politicians who blurt or tap out stupid things that they must walk back after a public outcry. Almost always they claim to have been “misunderstood.”

Let me tell you, no one knows about being misunderstood better than people with disabilities.

I find that people who consider themselves “normal” often equate disability with inferiority, both physical and mental. I can’t tell you how many times in all my decades on this planet potential employers and strangers have taken one look at me and dismissed me as drunk and/or mentally deficient. I have never been able to take such assumptions in stride; I can feel the ire rising up in me even as I relate this now.

When I was younger and visited my sister here in the U.S., occasionally I would go out for drinks with friends and family. I quickly learned enough English to say “I not drunk, I handicapped” to get refills from bartenders who thought I’d had enough.

Shortly after I was married, my wife and I accidentally tripped the alarm at my sister’s house one evening. We knew the police would arrive shortly, so we waited for them at the front door. When the officers came, one of them saw my slight tremor and heard my slight slur. He said to my wife, “And I see he’s had a bit too much.”

I still wasn’t comfortable with English, so my wife spoke up and explained that I was not drunk but afflicted with cerebral palsy. The policeman had never heard of the condition, so my wife patiently launched into a mini lesson about it. We hope this helped him learn not to jump so quickly to conclusions about individuals.

My experiences are nothing compared with those of “Jeff,” an acquaintance of my wife’s. Jeff had an alcoholic father who was violent with his family. When Jeff was about 11, he hurt his head badly when his enraged father lifted him from the floor and threw him hard against a wall. We don’t know if that was just a one-time occurrence. We also don’t know if that injury led to Jeff’s problems later in life.

Jeff began to fall asleep at inopportune times. Imagine a prison guard who falls asleep on the job. Or a city bus driver with a busload of passengers who suddenly starts snoozing. Jeff drifted from job to job. He worried constantly about supporting his wife and children.

Sometimes he would suffer from sleep paralysis; he would be wide awake but unable to move or speak as he lay next to his wife. This scared him profoundly. His doctors offered him no explanation. Jeff’s wife and others around him considered him lazy, incompetent, good for nothing; eventually, she divorced him and kept the children from him.

Even Jeff chided himself for the way his life was turning out. He could not understand why he needed to sleep like he did. Finally, when Jeff was nearly 50, a doctor suggested a diagnosis of narcolepsy. An expert confirmed the condition. So began the next phase of Jeff’s life – on narcotics, which in those days meant amphetamines. These helped Jeff function better, but he kept needing higher and higher dosages to keep the narcolepsy under control.

Unfortunately, the medication that was supposed to help Jeff lead a better life made his heart weaker. This in turn prevented him from getting and holding on to decent employment. He ended up living off a small Social Security benefit in a rooming house. He died alone.

My wife remembers Jeff as a sweet-natured man with a sense of humor. She also remembers that he was an accomplished tap dancer. In his youth, Jeff had entertained American military service members across the country in USO shows.

I like to imagine Jeff tapping carefree and happy across a shiny dance floor on a heavenly plain, to the sound of loud applause.

Can You See the Real Me? – Corfu, Greece courtesy of “Mrs. Anton”

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