|View Our Catalog||Genetics, Disability, and Deafness|
From Ragged Edge Magazine, cont’d.
Many Deaf people do not consider deafness a disability, because the important limitations imposed on the lives of deaf people are imposed by society from outside -- and not by physical characteristics inside -- their bodies.
Many disabled people, however, argue that the limitations on all disabled lives are imposed by society from the outside; and the principal beneficiaries of a society designed for hearing/nondisabled people seem intent on believing, no matter what anyone says to them, that the limitations imposed on deaf/disabled lives are wholly the result of our tragically not being more like them than we are.
These are the same folks, of course, who are shocked that those of us who are tragically not more like them might not be hoping against hope that we can be made to resemble them more closely or, at the very least, that those of us alive today will be the very last people who are so afflicted.
They were my constant, if incorporeal, companions as I went through Genetics, Disability, and Deafness. They worried about how they might go about helping to ensure that we are the very last of our kinds. Their mouths gaped open when they were faced with our noncompliance with their plans. They scuttled around devising industrious schemes to overcome our noncompliance.
And somehow they found themselves having circled ’round to where Bell stood all those years ago; and started up again.
“For decades,” writes Walter E. Nance in the essay “The Epidemiology of Hereditary Deafness,” geneticists have taught students that they should not be concerned that finding cures for serious genetic diseases, such as phenylketonuria [PKU] or cystic fibrosis [CF], will increase the frequency of those diseases in the general population. . . .”
Why might they worry? Because as long as having those genes makes people less likely to have children than people without those genes, relatively few of them will be passed from one generation to the next. But if you find a way to give people with PKU or CF the same chances in life as everyone else, more of those people’s children will be born, and even more of their grandchildren; plus, people who judge the genetic risk of their children having PKU or CF to be too great will be reassured and may decide to go ahead and have children anyway.
John Vickrey Van Cleve is Professor Emeritus of History, Gallaudet University, Washington, DC.
ISBN 978-1-56368-576-7, 6 x 9 paperback, 240 pages, tables, figures, photographs, references, index
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