Fellow awesome writer person Sarah Gailey had some stuff to say about the class eugenics that lurk unspoken in the repeal of the Affordable Care Act, and if you know Sarah, you know that what she writes is worth reading. Just check out her work at Tor.com, or her upcoming novella (omg hippos), River of Teeth.
Healthcare is essential to human life.
Without it, people die. Babies die. Mothers die. Kids with allergies die. Grandfathers with pancreatic cancer die. People with disabilities die. A steelworker who gets his hand crushed, a farmer who gets bitten by a snake, a teacher who has a heart attack. Without doctors and medicine and treatment, people who get sick or injured die.
This is the endgame of the ACA repeal: death for those who can’t afford insurance and who can’t privately pay for healthcare. Death for the poor, death for the unemployed, death for the newly self-employed entrepreneur, death for the laborer with three part-time jobs and no benefits. Death for the widow who relied on her late husband’s insurance; death for the orphan who was a dependent. Death for the infant whose mother couldn’t afford birth control or prenatal care. Wealth or death: those are the choices.
While this may sound harsh, it shouldn’t be surprising. The social Darwinism that drives so much of America’s rhetoric — the pull-yourself-up-by-the-bootstraps narrative that undergirds the American Dream — makes a snug fit with the consequences of the ACA repeal. This is the comfort of the wealthy: those who can’t afford healthcare can’t afford it because they’re lazy. They didn’t try hard enough, so when they die, they have only themselves to blame.
“If you can’t afford treatment, you don’t get treatment.” This is the basic concept that drives opposition to universal healthcare — and yet, even that blunt statement flinches away from the true conclusion of its execution. The true conclusion is this: “if you can’t afford treatment, you deserve to die.” Those who can’t afford antibiotics will die of fevers. Those who can’t afford dental care will die of rotten teeth. Those who can’t afford chemotherapy will die of cancer.
In this scenario, the poverty that American morality has always scorned becomes a capital offense; the pursuit of wealth, a necessary route to survival. Never mind that wealth is overwhelmingly concentrated in populations of privileged white people with family legacies that are rooted in the exploitation of those who benefit from the programs like the ACA — never mind that. [8 people hold as much wealth as 3.6 billion — cdw] The bottom line is this: those who are not wealthy enough to afford the cost of healthcare will be eliminated.
How could this be allowed to happen? How, in our nation, which we call the wealthiest, the greatest, the strongest nation on earth? How could we propose to allow millions of citizens to go without the medical care they need? How?
Well. Let’s talk about eugenics.
For those who are unfamiliar with the concept, eugenics is a horrific application of selective breeding. To understand selective breeding, imagine a gardener who wants all of his pea plants to have purple flowers on them. He would have to weed out the pea plants with white flowers on them, and plant only seeds from the plants with purple flowers.
In 1937, a guy named Frederick Osborn proposed that the principles of selective breeding should be applied to the social order: encourage people with desirable traits to reproduce, and sterilize “undesirables” to remove their genes from the pool. Osborn’s ideas were heavily tied into the rhetoric of social Darwinism, which suggests that the law of natural selection applies to modern society: only the strong deserve to survive.
Many will rightly associate this concept with fascism and particularly with Nazi Germany — but it cannot be forgotten that eugenics was popular throughout the Western world, and particularly in the United States, during the early 20th century. Our country participated in the “removal” of traits which the government deemed undesirable — traits which included mental illness, physical disability, nonwhite heritage, and any sexual identity other than heterosexual. In 1927, the United States Supreme Court passed Buck v. Bell, which effectively legalized compulsory sterilization. Individuals were sterilized against their will, incapacitated, or killed under the euphemism of ‘euthanasia’.
Today, this practice is widely considered to be unethical, dehumanizing, and morally repugnant. The repeal of the ACA brings it to the forefront of American society, hidden behind a thin veil of capitalist ideology.
Does this embody the national character Americans claim to have? We call ourselves “the greatest nation in the world,” and “the land of opportunity.” We pride ourselves on our immense national wealth. We claim to have a social, political, and economic system upon which all others should be modeled — and yet we are debating a proposition that would leave millions of Americans at risk of death due to a lack of coverage. And so it is that we must ask ourselves: does an American morality that leaves the uninsured to die embody the universal right to life that is promised in the second sentence of our Declaration of Independence?
No. Instead, it embodies the darkest facet of the American perspective on capitalism: that citizens are justified only by their earnings, and that without justification through labor and wealth, the life of a citizen is not the concern of the American government. This is the America that we so consistently look away from: the America whose constitution was written solely for the benefit of landed white men. The America that pioneered early eugenics; the America that, years before Hitler’s rise to power, began attempting to rid itself of “undesirables.”
Today, those citizens who are not wealthy are being declared undesirable by the ACA repeal.
And we know what happens to undesirables.
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ADDENDUM, 1.17.17, by Sarah Gailey
When I wrote the above piece, I failed to recognize a long-running conversation in the disabled community about the eugenicist roots of healthcare reform, and about the destructive legacy of American eugenics. I am so thankful to the people who took the time and energy to help me recognize the frustration that’s caused by my participation in this conversation. Several disability activists and disabled people brought this to my attention after the piece went live: disabled voices have been talking about this issue, but their voices are too often ignored. The ACA repeal and American eugenics have a massive effect on the disabled community, and in a conversation about either, that harm should not be elided. I’m not qualified to write about the specific ways in which the disabled community is impacted, nor would it be appropriate for me to do so. With that in mind, I had a conversation with disability activists Heather Ratcliff and Elsa Sjunneson-Henry. They suggested we add that conversation to this piece, adding their perspectives on the way these issues intersect with disability.
Elsa Sjunneson-Henry is a .5 deaf, .5 blind, .5 Scandinavian SFF writer. She is the founder of feminist sonar (feministsonar.com) and has written about disability for Writing the Other, Terrible Minds, Dragon+ and many other websites. She’s a disability rights activist and general loudmouth. She tweets @snarkbat and is the assistant editor of Fireside Fiction.
Heather Ace Ratcliff is a former mortician and current disability rights activist. She has been featured talking about her invisible disability, Ehlers-Danlos Disease – III, at the Guardian and the Economist, as well as on the podcast “Off the Record.” Poems about her disability have been featured in Breath & Shadow. She tweets @mortuaryreport, blogs at mortuaryreport.com, and is the proud creator of Stay Weird, Be Kind (#swbk, stayweirdbekind.com).
SG: Thank you both so much for taking the time and energy this morning to help illuminate some of the frustration I caused by writing this piece without bringing in the voices of the disabled community.
ESH: (THIS ONE IS HARD) Disability isn’t a monoculture. That’s the first thing we need to be really aware of – I don’t speak for everyone, and I can’t, and I shouldn’t. But what I can do is shed a little light – I know many disabled people who struggle when able bodied writers get attention and praise and are just damn well heard about things we’ve been saying forever. It happens more frequently than we’d like. Many of us have been shouting on Twitter about this for months – and haven’t felt heard by the able bodied community. In addition to when Sarah spoke with both Heather and I independently, Heather and I checked in so we could support one another. These discussions are hard, and having them with your friends is harder.
HR: Elsa’s exactly right: because disability runs the gamut of politics and opinions and life experiences, it’s difficult to pin down any one thing we all agree on. However, I think many of us can agree that the disability community finds extreme frustration when our voices are ignored on issues that affect us and non-disabled voices are uplifted while spreading the same message. It’s a little bit like screaming incoherently into the able-bodied void. You can’t be for us without us, as they say.
SG: I had originally written the piece with a focus on poverty — and something that I’ve come to appreciate after speaking with both of you is how deeply intertwined the issues of poverty, disability, and healthcare are.
HR: Teasing apart where one intersection ends and the other begins is nearly impossible. When Sarah notes in her essay that “those who are not able to afford the cost of healthcare will be eliminated,” a large group of people who will be directly impacted are disabled people, who are more likely to have poor overall health and therefore require access to medical services more often. Those medical services become extraordinarily cost-prohibitive when paying out-of-pocket instead of with insurance garnered through the ACA. When it comes to income, the poverty rate for working-age people with disability is nearly two and a half times higher than that for people without disabilities; people with disabilities are two times as likely to be poor as non-disabled people.
ESH: Many non-negotiable adaptive devices are also brutally expensive. Literally this past week, as the ACA repeal began picking up steam, I was having a prosthetic eye made, which is vital to my quality of life. Pre-ACA insurance wouldn’t have covered it (and didn’t) and the last one cost an arm and a leg. It’s not a choice to have a wheelchair or a prosthetic – and when you don’t have a choice those medical devices can throw you deeply into debt.
People with disabilities are placed in a very weird position by society – we’re supposed to be inspirational public commodities of hope, and yet simultaneously not make any noise or fuss about how hard it is to access the medical devices we need to live and survive and interact with society. Basically – be adorable and childlike, but don’t you ever tell us how much your wheelchair cost.
SG: You’ve both spoken extensively about the ways in which our healthcare system keeps people with disabilities in a state of economic struggle. What are some of the systemic issues that undergird the intersections between disability and poverty?
HR: Part of the issue with poverty and disability is job security and economics. Under the U.S. Department of Labor, it’s currently legal to pay disabled workers less than the legal minimum wage. Even securing those jobs is challenging when you’re disabled: in 2015, only 17.5% of people with disabilities were employed, compared to 65% of non-disabled people. Fewer than 1 in 5 PWD is employed, and disabled persons earn significantly less than non-disabled workers when they are working. The conversation on accessibility of jobs, workplaces, and employment discrimination is another one entirely, but you can see where the cycle feeds itself.
ESH: What Heather said. Additionally, education (which is often necessary to accessing higher paying jobs), is often inaccessible to people with disabilities. Whether it’s universities which still haven’t updated to ADA standards, professors who refuse to accommodate you, or even just the cost of education, getting your foot or wheels in the door is significantly more difficult. Many of us have fought tooth and nail to GET education, to get jobs that are considered “important,” but there’s another piece going on here:
Sometimes we literally can’t even get into the workplace. Many disabled people, myself included, have had the experience of applying to a job, being told they’d be great at it, only to find out that the company cannot accommodate your access to the office, or your needs in the workplace
Again – be a fully participating member of OUR society, but don’t tell us that you can’t get inside the building even though we don’t have a wheelchair ramp.
SG: There’s significant history underpinning these contemporary issues around the treatment of disabled people in the United States. In my piece I touched briefly on the history of American eugenics, but not at all on the ways in which that history specifically impacts the disabled community. What are some things you wish more people knew or considered about that context?
ESH: Let’s talk about perception for a second. We live in a country where disability isn’t seen as “wanted” and so when we talk about reproductive history and disability, we have to talk about how disabled babies aren’t wanted. It’s hard, because it makes a lot of people uncomfortable, but we have to talk about the fact that it’s morally acceptable to abort a fetus because you don’t want to have a disabled child.
When I was born with Congenital Rubella Syndrome, my parents were told that they should give me up to the orphanage, that they could always just “have another one” because nobody wants a disabled baby, right?
Fast forward to adulthood, and many disabled people who want to be parents are told they shouldn’t because they’ll “pass on” their disabilities – so if we’re talking about a world where disabled babies parents are asked if they want to get rid of their children, if disabled adults are told they shouldn’t have children – there’s a value judgement being placed on a disabled life.
I mean, let’s be real: In a country where LESS THAN A HUNDRED YEARS AGO the most well beloved Justice of the Supreme Court of our country said, “A generation of idiots is enough.” We have a problem – and that problem reaches well both into the social mindset and the legal one where disabled bodies are concerned.
HR: Coerced sterilization of many groups, including disabled people, is a really disturbing part of American history. Throughout the 20th century, federally-funded sterilization programs took place in 32 states across the U.S. 32! In 1927, as you mentioned in your essay, the Supreme Court ruled to permit compulsory sterilization of “the unfit” as legal – a decision that’s never been expressly overturned.
I live in California, which is a state that sterilized almost 20,000 people from 1909 to 1979. Hitler espoused California’s eugenics programs in Mein Kampf, that’s how successful it was, and his T4 “euthanasia” program, first enacted in 1939, specifically targeted disabled children for murder as a rehearsal for Nazi Germany’s subsequent genocidal policies. The T4 program deemed disabled children “life unworthy of life;” individuals who represented a genetic and financial burden on the German state by virtue of their psychiatric, neurological, or physical disabilities. The program started with infants and toddlers, then was expanded to include teenagers, then was expanded yet again to include disabled adults in institutions – and medical personnel were not just complicit but actively involved in determining who was sent to their death. Over 70,000 institutionalized disabled people were murdered at six gassing facilities in less than two years of the program.
As writer s.e. smith pointed out in a 2014 article for Rewire, “laws regarding sterilization for reasons of disability still remain on the books… [and]… are not simply holdovers from a previous era.” Smith points to cases in 1993, 1998, and 2007 cases where disabled children were sterilized as a “method of convenience” for their parents.
SG: This has all been incredibly illuminating. Thank you both so much for your voices and your work. In addition to your platforms, what are other disabled voices and platforms that people should be listening to and supporting in order to better understand the issues, history, and experiences of disabled people in America?
HR: Alice Wong (@AliceWong) with the @DisVisibility project is amplifying disability stories and culture! Karolyn Gehrig (@KarolynPRG) is bringing invisible disability stories to light with her #hospitalglam project. #CripTheVote is an incredibly active hashtag reflecting disabled involvement in politics. Pretty much you could follow me and Elsa’s entire Twitter feed and find important, integral disabled voices to be uplifted and included!
ESH: Lydia Brown (@autistichoya) and Vilissa Thompson (@VilissaThompson) are both doing important work with regard to the intersection of disability and race. Also, check out David Perry (@Lollardfish) and his work on people with intellectual disabilities, and the interactions of PWD and the police state.
SG: Thank you both so much. And, thank you also to the several people who expressed their dismay on social media over the past twenty-four hours. You are so important, and I can’t tell you have grateful I am for your hard work and for your voices. Keep doing what you’re doing. <3
EDIT: visit WithoutACA.com to view stories of those who will be affected by the ACA repeal.