Dr. X was a normally functioning medical student with a wife and two children when one day he woke up, got out of bed, and fell on the floor. His right side was completely paralyzed. He was taken to the hospital in an ambulance; tests were done; and he was diagnosed with Multiple Sclerosis.
Eventually the right-sided paralysis moved to his lower body, and with intensive physical therapy he was able to walk using two forearm canes, the kind where the whole forearm is supported by a rest and the hand grips a handle. He finished medical school and did a residency in Rehabilitation and Physical Medicine, in which he was an expert due to his own experiences. His disability proved to be an asset, even, because newly injured patients could not cry out accusingly, “You don’t know what it’s like!” because he obviously DID know “what it’s like” to struggle with his disability every day of his life.
When he came to visit us, in our second year of medical studies, he spoke at length about the difference between a disability and a handicap. A disability, he said, is a physical or mental difference in the way our bodies or minds work, when compared to what he called the “temporarily able-bodied,” which means everybody else, because everyone, at some point in their lives (for the most part) will lose some kind of physical or mental function.
Then what is the difference between disability and handicap, other than the former being a more politically correct term than the latter, for describing a person who is “differently abled”? The difference, he said, id that a disability is a condition where the body/mind is altered from the accepted standard, while a handicap prevents the person from functioning in society. It is, he said, mostly a self-defined condition.
He went on to say that everyone who finds her/himself either suddenly or gradually differently abled must struggle with the question, “I know the things I can no longer do; but what are the things that I CAN do? In fact, what does my disability make me an expert in? How can I use it to my advantage? Or, what are the things I am already an expert in that I can still do?”
Obviously this does not apply to someone who is God forbid in a coma, or psychotic, or immobilized by depression. But it immediately brings Steven Hawking to my mind, and Christopher Reeves, Virginia Woolf, Sylvia Plath, and even Edgar Allen Poe. Hawking never mentioned his disability, but instead focused on science, with occasional wanderings into philosophy. Reeves, once he regained enough strength to become an activist, poured his energy into promoting research for spinal injuries. Woolf and Plath used the creativity that often accompanies mental illness to write exquisite prose and poetry, before their illness got the best of them. All of these people eventually died as a direct result of their disabilities, but during their lifetimes they made contributions to science and culture that will last forever.
I am often thinking about this, now that I have received a seven page disposition from a federal Social Security judge, declaring me totally and permanently disabled beginning on the date April 4, 2000, which is the date that I had my devastating breakdown. For a few weeks after receiving the letter, I despaired of ever being of use to society again. I contemplated suicide night and day, as I felt that I would only be a burden on society and my family, even though I rarely see any of them because of my reclusive habits, which are due to my illness.
After a while I began thinking that my lack of employment could be used as an opportunity to write the memoir that has been hanging around the edges of my mind for decades. My life really has been stranger than fiction, so why not write it? This has led to taking mini-courses on various aspects of writing and publishing.
And due to the encouragement of my friend Ruth Jacobs, author and anti-prostitution activist, I have begun writing on the topic of sexual exploitation. I was exploited as a youth, and until now this was a source of shame and distress. Ruth has shown me that I can use my own experience to reach out and help others who may be in the same position to see themselves as survivors rather than victims, and to help each other heal through our solidarity.
I am working on the art of being disabled, not handicapped.
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