Recently, the renowned children’s hospital down the street from my house restored hearing to an 11-year-old boy via a cutting-edge experimental gene therapy. Coverage was predictably fawning, with almost no one stopping to ask basic questions about the ethics of the trial, like, “why are we experimenting on disabled immigrant children of color when they are not suffering from a life-threatening condition, and will receive no meaningful benefit from ‘treatment’?” (Being long past the critical window for language acquisition, the 11-year-old is likely language deprived, and will hear sound, but never understand speech.)
I wrote about this, and some of the other educational, social and moral concerns in the Inquirer, here.
The response was, of course, terrible. Hearing people everywhere slid into my DMs to tell me I was selfish, that what I had written was, “a slap in the face to doctors and researchers everywhere,” that I was mentally ill for finding life as a deaf person preferable to their experience of hearing, that deaf people should happily lay themselves down in sacrifice to the greater good of curing cancer or tay sachs, or other actual diseases that see a future promise in the technology.
Neither the hate mail nor the ideology is anything new, of course. Deaf people have been a target of eugenics since its advent, and gene and stem cell therapy in particular have been something many folks in the deaf community have long-feared. If you’ve read True Biz, you may remember Wanda and February’s fear of “The End,” a term borrowed from Ted Evans’ 2011 short film by the same name, which you can watch for free here, and which makes me cry every single time.
Living on the precipice of your own extinction can wear. It’s hard to interact with a world in which being deaf is acceptable so long as its under the assumption that I hate myself, and would jump at the first chance to become hearing. Sometimes, it’s hard to smile back.
Why do we celebrate human diversity for some cultures and languages, but not others? Speak out against conversion therapy and medical oppressions against some groups, but applaud the systemic deletion of others from the genome as “progress”?
At the root of this idea—that the joy I take in a life different from the average is a personal attack on theirs—is the same fear so many marginalized people will recognize. And ableism is one of the hatreds that remains broadly socially acceptable, even across intersections of other identities. People frequently feel justified, even gleeful, in their doubling down. Often, they don’t even believe it exists at all.
I used to think that if I could just write hard enough, I could change people’s minds. I don’t think that anymore.
And given the current state of the world—here, in Gaza and Sudan and the DRC and so many other places—I know I’m not the only person wondering what it means to make art at the end of the line.
But being confronted with destruction doesn’t mean there’s no value in creation. At the end of the 19th century, when an oralist group hijacked an important educational conference and banned signed language from Western deaf education, deaf people also saw in that decree a terrible end for themselves. Worried that ASL would go extinct, George Veditz, first President of the National Association of the Deaf, began to record sign for posterity. The results are some of the earliest and oldest remaining reels in the then-new medium of film.
Deaf people endured the crisis of 1880. Maybe there’s a way out of this one, too. But if not, maybe writing it all down and saying, “we were here, once,” can be enough.