Medical Technology, Disposability, and Profit: Thinking Beyond and Around Covid-19
(from a talk first given at Syracuse University, 2021 )
We un-choose disability in hundreds of ways. We condone genetic testing for pregnant people and rarely question the ethics of disability- selective abortion. Some pro-choice activists justify late-term abortions with talk about fetal abnormalities—or in plainer language, disability. We accept as a matter of course that sperm banks screen out donors with a whole host of body-mind conditions considered undesirable. We walk to end breast cancer and run to end diabetes. We want to control how, when, and if disability and death appear in our lives.
This disposability is both so pervasive, targeting many marginalized communities, and feels so personal. In 1963 my mother was twenty-six, a newly married working-class student struggling through graduate school. Every day she answered to professors who believed women belonged not in the classroom but at home, tending children. In the spring of that year, she discovered she was pregnant with me. That pregnancy was unplanned. It completely changed the course of her life.
I grew up knowing she desperately didn’t want a disabled child. She made that clear in a thousand ways. She was an intensely unhappy mother. Maybe she didn’t want any children. Yet her grief, guilt, bitterness about my cerebral palsy was so distinct, so personal; at ages ten, eleven, twelve, I believed she didn’t want me. I may have been right. But for sure, if she could have un-chosen disability, she would have.
And then there are the moments when disability is actively chosen. Prospective foster or adoptive parents fill out agency paperwork requesting a disabled child—or more likely in the language of those bureaucracies, a “special needs” child. Pregnant people decide to keep their fetuses predicted to have Down syndrome. Or they decide against genetic testing altogether, letting the crapshoot of disability run its course unimpeded. Deaf people using alternative insemination to become pregnant seek out deaf sperm donors, wanting to increase their likelihood of having deaf children. Transabled people, sometimes called disability wannabes or amputee wannabes, feel a need to be disabled Many have sought out surgeons, planned self- amputations, or staged disabling events, manifesting their desire in actual disability. Or, unable to acquire a disability, they use crutches, braces, wheelchairs anyway.
How the world treats people who, in some fashion, choose disability reveals so much. When transabled people come out, putting words to their desire, they most often encounter revulsion, anger, disbelief. The medical-industrial complex pathologizes them, labeling their so- called troubled body-minds with the recently invented Body Identity Integrity Disorder. People who choose to increase the likelihood of having a disabled or deaf child are deemed categorically selfish and immoral. They’re accused of burdening their children and sometimes publicly shamed by the media. People who forego genetic testing, deciding not to intervene in the possibility of disability, are seen as vaguely foolish. People who choose against disability- selective abortion after a positive test for a variety of genetic conditions are frequently perceived as downright irresponsible. And people who adopt or foster disabled children—the world treats them as martyrs engaged in charity work. The act of choosing disability in the white Western world is never neutral, simply one choice among many, but rather pathologized, shamed, or sensationalized. In contrast, un-choosing disability is celebrated and framed as a collective imperative.
copyright 2017, Eli Clare