by John Lee Clark
In 1994, a teenage boy with Usher's syndrome had a summer job working for Dr. Sandra L. Davenport, a geneticist and a leading authority on causes of deaf-blindness. One day, she asked him to write an article on "What a Person with Usher's Syndrome Sees." He obliged, producing a document that Davenport still passes around today. Davenport's initial interest was medical, of course, and the article contained forthright descriptions of what the world looks like through "Usher eyes." But the boy did not stop there; he closed the article by making this statement:
I consider deaf-blindness a benefit, not a loss. Many people, without hesitation, pity deaf-blind people due to the "fact" that they cannot hear and see. From my point of view, that "fact" is completely absurd! I believe that all people, no matter what the circumstances may be, are normal. We human beings do not have to see with our eyes; we do not have to speak with our mouths; and we do not have to hear with our ears. We CAN see, speak and hear using various methods. Therefore, all people are normal . . . just in different ways.
This single paragraph encompasses the cultural perspective of deaf-blindness. It holds that being deaf and blind is not a disability but a perfectly normal. Yes, it may be "different," by virtue of its rarity, but not any more special than what is included in the staggering variety of the human race. But what led the boy to feel strongly, at such an early age, about this, enough to write against the medical and the most widely accepted understanding of what he was?
I know the answer, because the boy was me. It is a simple matter, really: I was exposed to deaf-blind culture before, and always more than, I was to mainstream culture and its social construction that brands me as disabled. My father is deaf-blind, so I grew up in the deaf-blind community and had deaf-blind role models. Only, my father was just my father, the deaf- blind community was just a collection of people I knew, and my deaf-blind role models were just role models, good men and women who shared their stories and wisdom with me. In other words, they were just human beings.
But the medical perspective is formidable, so much so that many deaf- blind people themselves internalize it. In society, they are treated either as lesser or very special beings. Often, maddeningly, they are treated as both. Despite this, what I have always known is that we are ordinary people. The aim of cultural awareness, both for the community and the rest of the world, is to understand deaf-blind life well enough to appreciate how we all are "normal . . . just in different ways."
What I am saying is not remarkable. Take Mel Stottlemyre, a fine former major league baseball pitcher. After he was diagnosed with a blood disease that kills most people within four years, he said, "I never ask 'Why me?' I mean, why NOT me? After all, I am just another human being." If an athlete can accept imminent deterioration in health and death as part of the human condition, is there any excuse for not accepting a different way of living?
What is sometimes worse than being pitied, because it is harder to resist, is being exalted, to be an object of awe not because of what one did but simply because one is deaf and blind. It has its rewards, and Helen Keller invested profitably in it, becoming such a success story that Mark Twain declared, "She is the most marvelous person of her sex that has existed on this earth since Joan of Arc." While Helen Keller's accomplishments by themselves warrant merit, she was far more opulently praised because she was deaf-blind. This, too, is disabling. I cannot help but read between the lines of what Keller once said: "I long to accomplish a great and noble task; but it is my chief duty and joy to accomplish humble tasks as though they were great and noble." I, too, long to do great and noble things. But I do not want to stop there; I want to do these things. Why not? Deaf-blind people can do anything. Sometimes in unusual and creative ways, certainly, but anything. But if I fail to do truly great and noble things, then it will be my joy to do small things. Either way, however, I would like to get the same credit anyone else would get for doing the same things. After all, I am just another human being.