“The future doesn’t belong to you,” a friend tells me, when we walk home together one night. Not in those words, of course. Rather, he talks about scientific advancement, genetic manipulation, and how soon, we won’t have disabled people anymore. We can fix you. We can fix those who can’t be happy because they don’t know what abled happiness is. Better yet, we prevent them from being born altogether. The future will look brighter.
My friend invites me to my future. Welcome to the eugenic utopia.
“You don’t belong to the future,” a guest lecturer implies in one of my classes, years earlier, when we discuss medical ethics and neurosciences. Not in those words, of course. Rather, her arguments are thought experiments, challenging the future of medicine and technology, and the boundaries of acceptable humanity. I nearly agree with her, because in all my life, I have seen no evidence to the contrary. Internalized ableism is one hell of a drug.
“Do we belong to the future?” a fellow disabled author asks me, after yet another panel turns into a discussion about eugenics, after yet another futuristic perspective handwaves the consequences of disability, perfects technology as cure, or simply forgets about us altogether. The answer should be a simple, easy, resounding yes. And yet. We keep asking the question.
Welcome to our eugenic eutopia: we can see where we’re not wanted.
The nondisabled future comes up in discussions about representation in science fiction a lot in my community of disabled and otherwise marginalized authors. It comes up less outside of those groups. I’m not always one to bring it up then, either. When you’re faced with surprise!eugenics often enough, you learn to keep your mouth shut in situations that aren’t actively, purposefully inclusive and safe.
The downside of that is that often it means the conversation simply isn’t being had. And it needs to be. In creative spaces. In creator spaces. And especially in nondisabled spaces. So this one is for you, abled creators and purveyors of the future. This is what I want you to know.
You should know that the nondisabled future is built on an all-too-current eugenic baseline. That future is a dreary place. It is a future that is pervasive and othering. Othering, because it tells abled people that we don’t belong. Pervasive, because it tells us, disabled people, the same thing.
You should know that for the longest time I believed that.
As Dr. Rudine Sims Bishop wrote in 1990: “Books are sometimes windows, offering views of worlds that may be real or imagined, familiar or strange. These windows are also sliding glass doors, and readers have only to walk through in imagination to become part of whatever world has been created and recreated by the author. When lighting conditions are just right, however, a window can also be a mirror. Literature transforms human experience and reflects it back to us, and in that reflection we can see our own lives and experiences as part of the larger human experience. Reading, then, becomes a means of self-affirmation, and readers often seek their mirrors in books.”
I grew up reading science fiction and I found no mirrors. Imagine what that feels like. Imagine what that feels like, specifically, in the context of bright and infinite tomorrows.
And I believed it. I grew up in a society that believes disability is a bad word and being disabled is a terrible fate. Its common approach to disability is: “We will fix what ails you. If we fail to do so, you’ll be a burden on society.”
I turned to books to escape that.
This is the future, my books told me. You do not belong here, either.
The nondisabled future is fed by the common idea that technology will be a panacea that will eradicate impairments and, presumably, normalize brains. (Whatever normal is, in any given context, at least.) The nondisabled future is a cruel concept at worst, an unaware one, or an ignorant one at best.
Ignorant, because it vastly misunderstands what disability is and how it functions. The idea of fixing what ails you is rooted in the old-school medical model of disability: people are disabled by their impairments. Take those away and everything will be splendiferous(ly bland). If you can’t take them away, you’re pretty much screwed. More recently, the consensus among disabled people, disability rights advocates, and (thankfully, increasingly) medical professionals is that disability is a result of social barriers. A wheelchair user isn’t disabled by their wheelchair, but by the lack of ramps. A developmentally disabled student is disabled by lack of access and support. The impairments may be medical, but disability occurs because people with diverse body types and neurotypes face ableism, abuse, and inaccessibility. And that’s far more complicated than can be technologically handwaved.
Unaware, because disability is not something that was invented yesterday. We lived in the past too. We’re part of your present. And if you do not recognize that, you don’t see us for who we are. You’re missing out on many stories being told, on many disabled advocates speaking up about our lives and our rights. If you don’t recognize it, you’re part of the problem.
Cruel, because the alternative of unintentional neglect is intentional erasure.
Of course, it’s not just about the technological cure-all. It’s about an awareness of whose stories are being told and who is allowed to tell those stories, of what the world looks like, of who we think competent or valuable enough to be our heroes.
It’s about crafting access in story form, which is a matter of radical and purposeful inclusion.
The simplest solution is this: we tell our own stories. And we do. If you don’t think we are, you’re not listening. But you, dear abled creator, have a responsibility too: recognize that we matter. Recognize our voices. Recognize us.
Do we, disabled people, belong to the future then? Yes, simply, easily, resoundingly. We belong. To think otherwise is a failure of the imagination. And personally, I no longer care for futures that hold no place for me and mine.
If you take the social model of disability as starting point, disability occurs as a result of social barriers, created due to lack of equal access, stereotyping, and other forms of marginalization. Unless you write a perfect utopia wherein none of those things matter anymore, disabled people will be part of your world. Of course, write a perfect utopia wherein none of those things matter anymore, and people with diverse bodies and diverse neurotypes still both exist and belong.
Let me repeat that, for good measure and emphasis. Regardless of the society you build, people with diverse bodies and diverse neurotypes still both exist and belong.
I’d love to see a world like that. Give us utopia and belonging. It may just may take some explaining how we got from here to there. And in every other, nonutopian scenario, there are countless ways to make your disability representation future-proof. Consider who we are, consider that we are. Consider the thousand ways in which the most technologically advanced societies will still include disabled people. Even—and perhaps especially—on the intersection of disability, (medical) technology, and access.
I’ll start you off with some ideas.
If you wish to insert disability into the narrative, start here: consider how your society interacts with bodies, minds, emotions. What is considered physically normal and physically desirable? What is normal and desirable behavior? Where does our (ableist) sense of normalcy and, far more interestingly, lack thereof intersect with other forms of marginalization?
What happens if someone does not meet the standards society lays out, bodily, mentally, emotionally. Are disabled people laughed at? Shouted at? Spit at? Are they considered valuable members of society? Or only when they are considered useful or productive members of society? Is access conditional? Are they pitied? Avoided? Propped up as inspiration? Do they have agency and voice or are they talked over? Is access seen as a right or a nuisance? Is illness considered weakness? Is life with disability seen as life on the easier setting by those who aren’t disabled?
I should tell you, all those are contemporary examples. If you are nondisabled, where do you think we stand now with regards to disability perceptions and disability rights? Can you answer that question? You should be able to before you write about us. You should listen to us before you write about us.
Consider then what happens in the future if someone does not meet the standards society lays out, bodily, mentally, emotionally. What has changed, compared to today? Why has it changed, or why hasn’t it? Are disabled people still marginalized, are they tolerated, or are they accepted?
Consider medicine and technology. If you consider technology as cure, how realistic is it? If you believe medical science should be developed to perfection, ask yourself: is medical science as developed as it should be now? Under what paradigm? Should by whose measurements? Is curative technology a priority and if so, why? If so, where is the line between curing and preventing? And, from there, between preventing and eugenics?
How are the curative technologies used? What effects do they have on the body? On the mind? How lasting is a solution? Are solutions surgical, genetic, or based on medication? Does it differ per class, perhaps? Does your economic status influence which options are available to you (if at all)? After all, access is an instrument of power.
If your solutions are medication-based, how readily are medicines available? Are resources ever a problem? What is society’s perspective of medication? I can tell you from experience that even something as deceptively simple as taking daily pain medication is frowned upon by people who do not live with—or even doctors who do not specialize in—chronic pain.
Extrapolate a future based on our present: what are the politics of medicine? What are the costs to hospitals? Or to pharmaceutical companies? Is “fixing” disabilities both desirable and cost-efficient? Plenty of medication exists in theory, could be produced, and would improve quality of life, but aren’t because their target audience is too small. How politicized is the medical community in your world and what are the ethical discussions about?
Consider instead: technology as access. Think, for example: virtual reality therapy sessions (I would love to see futuristic societies that have normalized therapy and staying in mental shape). Or cyberpunk canes (I want one). Translate your futurism to assistive devices, like service robot dogs, hover wheelchairs, communication devices, or hell, even just ramps everywhere.
Consider access and power. Even if medical science is developed enough to immediately fix whatever ails you, is that development accessible to all? Is health care considered a human right or a for-profit mechanism? What are the costs? Financially, physically, emotionally? The conditions? The ramifications? How does access intersect with other marginalizations?
As an example: in this day and age, we have relatively decent diagnostics for autism spectrum disorder—for white cis boys. White cis girls have caught up in recent years but are still underdiagnosed. Despite there being a higher prevalence of autism spectrum disorder among nonbinary people, access to diagnostics for trans people is complicated at best. And children of color of all genders deal with worse access to diagnostics and are often misdiagnosed or underdiagnosed.
Consider, too, how multiple disabilities can intersect and what that means for access. In certain situations, comorbidity might make diagnostics and access to medication or therapy easier. In other situations, coexistences of disabilities may make treatment overall much harder. Not to mention, what if institutionalized ableism is a problem in your society? What if it’s also the context in which doctors are educated? What if disabled people aren’t readily believed? What if theoretical knowledge and lived experience don’t match up?
What are the underlying reasons for providing someone access—or not? Because access is power, even when technology has become a benign panacea. Even when everyone should have access, it doesn’t mean they do.
Consider once more how your society interacts with bodies, minds, emotions. Everything follows from societal perceptions of disability. Everything informs societal perceptions of disability. If the medical community has evolved to a point where spinal injury cures are as common place as flu jabs, what does that mean for the overall development and society’s perspective of human health? Is life extension or enhancement normal? And if so, what effect does that have on the way injuries are perceived? The way disability in general is perceived?
Consider what would happen if someone, without any proof of science, decides medical science is the devil. It’s happened before. You need only look into the way vaccinations have been misrepresented and demonized in recent decades, and the way one-time nearly eradicated diseases are current once more. All because one former doctor falsified research. Consider what happens if facts become politicized.
And then, at the heart of it all, consider bodily and personal autonomy. No matter the technological advances, what if people don’t wish to be cured? Is that not their right? To decide that life with different body types and different neurotypes is both valid and fantastic? Because it may not seem that way to you, but many of us are perfectly fine the way we are. Our happily ever after is not dependent on being abled. I don’t wish to be cured. My cane, my joint braces, my weirdly wired brain are intrinsically part of me. I would take better painkillers, sure. Better access, please. But no one gets to deny my happiness.
That’s what I told my friend, when we walked home together that night. I’m excited for scientific advancement, because science is awesome in all meanings of the word. I don’t think it’ll be the solution to all our problems, because humanity as a species is great at creating new ones, but I’m cautiously optimistic. We could do brighter things. We could include instead of exclude.
But don’t you dare fix me. Give me the world to access. Fuck your eugenic utopia.
The future belongs to us. And more than that, we belong to the future.
Sims Bishop, Ruth (1990). Mirrors, windows, and sliding glass doors. Perspectives: Choosing and Using Books for the Classroom, 6(3), ix-xi.is.
(Editors’ Note: Marieke Nijkamp is interviewed by Haddayr Copley-Woods on the Uncanny Magazine Podcast Episode 24B.)
© 2018 by Marieke Nijkamp