To Me, Eugenics Proves That Society Is Inaccessible

How would you expect someone with a disability to react upon reading an account of a nondisabled man essentially telling a disabled woman she shouldn’t exist? Would you expect them to react with despair? Fear? Rage?

I reacted by laughing hysterically.

The chronic pain and increasing fatigue caused by the progression of my SMA affect my capacity to process information and stimulation. Things vary from day to day. Because of this, it took me over a year to get to the book “Disability Visibility,” edited by Alice Wong, although my colleagues and peers had long ago read it in book clubs or on their own.

Once I got into it, I wondered why I had waited so long. After rereading the first essay of the book, “Unspeakable Conversations,” by the late attorney and disability rights advocate Harriet McBryde Johnson, I now wonder why it’s taken me another year to write about this essay in particular.

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The New York Times Magazine first published “Unspeakable Conversations” in 2003. After reading the opening sentence — “He insists he doesn’t want to kill me” — one might imagine a monster holding a metaphorical or actual knife to the author’s throat. But what unfolds is a nuanced story of fierce debate and an uneasy amicability between McBryde Johnson and Princeton professor Peter Singer, whom the aforementioned sentence refers to.

At the time, Singer believed that parents whose babies were born disabled — like me — should’ve been given the option to euthanize us. It’s not like I haven’t heard of this position before. Prenatal screenings exist to provide parents a similar option. I don’t judge anyone who decides they can’t raise a disabled child, and I can even understand it. I grew up watching my own parents struggle to raise me. Life with a disability is hard for both the children and the parents, and I believe it’s a parent’s right to decide if they can raise a disabled child — for their sake and for the child’s.

The question is, why is living with a disability hard? Is it because of our impairments? I think Singer might’ve believed that, and he wouldn’t be alone. McBryde Johnson certainly didn’t. The essay is written from her perspective, so of course it would affirm the opinions of readers who agree with her.

But just look at her experiences: Inaccessible hotels. Overpriced hotels. Airlines breaking her wheelchair. The lack of public bathrooms with private changing tables for those who use diapers and bedpans. Uninformed opinions offered by both Singer and his students during a debate.

Our impairments don’t cause us to build inaccessible hotels or bathrooms, nor do they urge Princeton professors to make arguments typically reserved for eugenicists. Undervaluing disabled lives does. Systemic ableism does.

In the year 2022, we live in a time that has seen greater access for disabled folks and more discussion about our lives than we did two decades ago. With greater access and more value placed on disabled lives, arguments based on eugenics should serve as further evidence that disabled lives should be fully integrated into the larger society. To me, eugenics tacitly reveals our societies’ weaknesses.

This realization is what made me laugh hysterically. How can arguments that have damaged disabled lives be so flimsy? How can it be so easy to rip them apart just by creating better access to our societies and viewing others as human?

We continue the fight because whether or not we’re alive shouldn’t depend on what other people are like. We fight on in the name of activists like McBryde Johnson, who dared to argue for a better world.

Note: SMA News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of SMA News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to spinal muscular atrophy.