A disability advocate reflects on life with two disabled children.
In the bioethics community, many academics say humans have a moral imperative to have the best children possible. In the disability community, it’s a different story.
Writing in the New York Times this week, poet and disability activist Sheila Black reflected on her own experience of having children with disabilities. Black criticises recent trends in assisted reproductive technology such as increases in genetic screening, and suggests that disability is misunderstood by prospective parents.
I know what the “designer baby” people would say: the more “advantages” — beauty, height, intelligence — the better the life chances, the better the life. But I am not sure I believe them.
Life is more than that.
Black herself has a rare condition known as X-linked hypophosphatemia (XLH), as do her two of her three children. In her opinion piece she suggests that though the children may face a difficult future, they nevertheless can live a life of value, unique to their particular form of embodiment.
Of course, I worry about Walker and Eliza. At the same time, I experience so keenly their blazing necessity, their utter beauty. Once I was walking along between them, and I realized all three of us possessed the same awkward-to-most-people “disabled” way of walking. The rush of identification I felt was almost triumphant. We don’t move like other people, I thought, and who is to say there are not things we have learned uniquely from our way of moving or being?
Black’s opinion piece is part of a series of essays and personal reflections published in the New York Times new section Disability.
Rethinking disability and procreation
bioethics and the humanities
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