Ask Disabled People What They Want. It’s Not Always Technology.

The following is an excerpt from Against Technoableism: Rethinking Who Needs Improvement by Ashley Shew.

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Against Technoableism: Rethinking Who Needs Improvement

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Let’s start the way you expect a good disabled memoir or crip story to start: either with my horrible birth or my grave-​brave injury. It could be my monstrous birth—​a real term in medical history, by the way—​where I was born and had to fight against great odds even as an infant, and my story could end in triumph where I . . . ​continue to live and am writing a book about it. Or I could start with a freak accident that helped me steel myself against this cruel world, or even better, some gnarly war story: my heroism and sacrifice, the pledge I made to my brothers (siblings) in arms, living so their deaths will not have been in vain, paying the toll of freedom with my body. Then I could show the ableds how to really live (and laugh, and love).

Ooooh, let’s really lean into these narratives, mix up the stories for some real pizzazz: I’m born disabled, no one thought I would live, but then I become of military age, and I use a machete to fight for your freedom! So young, so heroic, so very disabled. You could meme images of me with the words “What’s your excuse?” superimposed over my twisted body swinging that machete as I sit atop DARPA-​developed disability technology, a super-​duper supersoldier with an inspiring message of vanquishing one’s enemies and one’s disabilities with the power of technology. Or maybe I could just die young so you can tell my story. I won’t sully my own good name by disappointing you with my normalcy. You could talk about how you learned so much from me or say how I’m no longer in my earthly prison (by which you mean my disabled body and mind). You can imagine me “whole” again (as if being disabled broke me, even though that’s how I was born or how I live my life). My parents, if I have them, can pen the story of how they learned to love me despite my many challenges; they will, of course, have to share their story of grief about my existence. Is this the disabled drama you want?

This kind of story might be what you expect, or even desire, but it’s not what you’re going to get. Disabled people are often asked to curate their stories to frontload their dramatic origins: I don’t begrudge those who start this way. But I like the poetry of The Cyborg Jillian Weise, especially the one where Cy (our disabled cyborg laureate) ventriloquizes a nondisabled audience member in “Nondisabled Demands.” The nondisableds have dragged our dear cyborg up to the stage, and instead of asking about poetry or any area of expertise, they demand Cy’s disability origin story.

You can’t expect people to read you

if you don’t come out and say it.

Before they will listen to the rest, they need the story, need to find out how inspired they should be. I see this same thing happen over and over: disabled experts and professionals are continually getting asked inappropriate personal questions when they are there to offer their professional expertise. They are not treated like other authors/scientists/social workers/teachers. Sometimes their expertise is rooted in their personal history (whose isn’t?), and a personal narrative is fine when they offer it, but sometimes they are treated as a sideshow—​a curiosity added to an event but taken less seriously than other experts. I see this play out most often for my autistic colleagues who have professional expertise in psychology, medicine, social science, human development, and education. They are asked to be part of events about autism or neurodiversity, but they aren’t treated the same as other participants, and they are very rarely paid the same (if they are paid at all).

While I hate that disabled people are forced to tell their stories, I do love stories. In fact, parts of this book will involve some of my own tales. I just don’t think most disability origin stories are very interesting. Mine is certainly not. Some are, don’t get me wrong. There’s a guy in one of my amputee groups who had his leg ripped off in a grain auger accident, and he did not pass out while he waited for emergency rescue. It’s always a shocker for newbies in my amputee groups who have come with stories less gnarly. I love when he shares his story with obvious relish: he’s got it well rehearsed for other amputees.

This kind of sharing among those in the community is different, though: the lessons are different. It’s usually not about being on the other side of something we’ve overcome. We survived or were simply born that way, some of us also have PTSD, but we also have normal lives and do average things. We ask each other about how kids adjusted, how family members reacted. There’s commiseration about dating and jobs. The improvements we see are incremental adjustments, sometimes nonlinear, with more surgeries needed, other conditions to manage, insurance woes, equipment issues. We compare prosthetic feet and offer ideas about physical therapy. We don’t all agree about how to approach situations, nor about what feet work best, nor about dating for that matter. Things aren’t tidy or managed. I like when it’s just us, and I like when the stories aren’t crafted for nondisabled expectations, like so many disability stories are.

This is a book about the stories that disabled people tell that nondisabled people usually aren’t interested in. I am a disabled person who uses various technologies. But my thoughts on technology aren’t the whole story. I don’t use all the technologies out there aimed at my disabilities (it’s hard enough to get some that I do use), and I certainly don’t claim to represent all disability communities—​or to be a representation of any sort, because we are all individuals. Instead, I intend to take seriously the experiences of disabled people in a world that often considers technology the “solution” to the “problem” of disability. The scare quotes indicate real fear here—​and I hope this book will help you understand why.

When people posit disability as a problem, they look for solutions. Disabled people can and do have problems, which sometimes include pain and dysfunction. However, many of our problems are social, structural, and practical problems that stem from the idea that disabled people are fundamentally flawed, unworthy of inclusion, broken, or inadequate. This is ableist thinking. We have to resist these kinds of assumptions, which produce simplistic disability stories that collapse disabled people into stereotypes.

When I was in grad school, before I was disabled, I made great friends with my fellow student Jill. I didn’t think of myself as disabled, and it would be another ten years before I would be diagnosed as having Crohn’s disease, but I was already having intermittent issues with inflammation and flares of symptoms that didn’t really make sense together yet. She was a paraplegic wheelchair user. She passed away over a decade ago now, but back then, we hung out with a larger group from our cohort, and Jill and I got along especially well. We had classes together, occasionally shopped together, and she’d invite us all to her apartment for group hangs. She was originally from New Jersey but had moved to New Mexico, where the climate was better for her. She loved New Mexico. She was just away to earn a master’s degree: two years in our program in Virginia, then she planned to return home to New Mexico to teach. She was full of jokes, and it was easy to be with her.

On our campus, disability accessibility was . . . ​shitty, to say the least. And she was the first physically disabled person whose experience I could really see clearly every day, since we were in so many activities together. I remember the long routes we had to take to avoid stairs. I was lucky to be in a ground-​floor apartment, so she could occasionally visit where I lived, though the bathroom door was too narrow, so visits weren’t terribly long. Her own home wasn’t ideal either. She had very little choice over what apartment she could move into—​so many fewer options than I had. And the apartment she ended up in wasn’t even truly accessible. It had a bathroom with an appropriate sink and toilet, but the shower wasn’t great, and the kitchen was just the same standard kitchen that was in all the apartments in the complex, so she had to be creative. The apartment complex itself was kind of a dump—​filled with undergraduate students and close to campus. The parking lot was always overfilled on football game days. On one of those days, we were going to hang out, and then she was going to go over to the library for an event. I drove over, found a parking spot way out in some grass, and trekked over to her apartment.

Jill was on the phone when I got there. Someone had parked next to her giant white van in the yellow-​slashed area that is the open zone next to her disability parking spot. She could neither get to the side of her van to get in nor open the door to allow the van’s wheelchair lift to fold out. The van was set up for her, with no seat on the driver’s side since she’d be in her wheelchair, so I couldn’t simply back it out for her to get in. (It was set up for someone like her, but not her, actually. She considered herself very lucky to get a secondhand wheelchair-​accessible van like this; it had been set up and driven by a different person with a similar disability. A new van would have been way out of a reasonable range of cost, and the secondhand van was still pricey.) She had already called the apartment complex once that day. Although the complex had signs all around the lot saying that it would tow away non-​resident cars (which this one was!), it was game day, so they didn’t want to call a tow company. They said they couldn’t do anything and told her to call the police. She called the non-​emergency police line, and they said it was the domain of her apartment complex. And it was game day after all, so the police were busy too. She was shuttled back and forth like a tennis ball. No one was going to do anything.

I was outraged. Why should my friend be kept home all day because someone decided to park where they shouldn’t? What if there had been an emergency of some sort for which she’d needed her van? Didn’t they know that disabled people had places to go?

Jill wasn’t pleased either, of course, but this wasn’t her first time hitting walls with access. I was naïve to be so mad. She encouraged me to let the air out of the car’s tires. I regret that I was too much of a wuss at age twenty-​three to actually do it. We already knew the police weren’t going to come about the car, so why didn’t I? Often, past me disappoints my currently disabled self.

I think of all the infrastructure that failed here—​that was really built to fail, because it was never built to consider disabled people. It did the bare minimum: the physical complex (and administrators, and the police) met a few legally required standards, but they did not actually enforce the civil-​rights law that is the Americans with Disabilities Act (ADA). Few complexes met even the lowest bar, so her housing options were limited—​she was glad to even get that dumpy, inconvenient apartment. The systems in place supposedly to give her equal access—​including her leasing office and the police—​were indifferent to actually ensuring that she had it. Jill missed the event she said she’d help with at our library. Turned out she was accustomed to these system failures. At least that day wasn’t a failure with life-​or-​death stakes, like the ones that would delay her access to gynecological care and ultimately lead to her death less than two years later.

One of my disability twitter follows, @MsSineNomine (Gabrielle Peters), used this phrase a few years ago: “Make it accessible or burn it down.” It’s since been printed on shirts, and I painted the words onto a canvas and hung it in my office . . . ​which is on the first floor of a three-​story building without any elevator, away from all my colleagues, where I was moved when I became disabled. Where every doorknob is non-​compliant with the ADA. I’m not plotting arson. But like Jill, I’m forced to think about inaccessibility a lot. Sometimes the stakes are our lives—​our literal survival, meaning that we could die due to inaccessibility and shoddy emergency planning. Sometimes the stakes are our lives—​our social, work, family, and love lives, meaning that we can be prevented from physically inhabiting places, going and doing things, having relationships and friends, doing meaningful work in the world. You know, having a life.

I came up with the term “technoableism” to describe a pattern disabled people see over and over—​and a pattern observed by many others too. Technoableism is a particular type of ableism, one that is highly visible in media and entertainment and omnipresent in the ways most people casually talk about technologies aimed at disability. Technologies for disability can never just be “tools that are useful sometimes,” in the phrasing of Jen Lee Reeves. Technoableism is a belief in the power of technology that considers the elimination of disability a good thing, something we should strive for. It’s a classic form of ableism—​bias against disabled people, bias in favor of nondisabled ways of life. Technoableism is the use of technologies to reassert those biases, often under the guise of empowerment.

Disabled people are often on the front lines of tech users; we are considered the first testing ground for new tech like exoskeletons, Closed Captioning, automatic door openers, text-​to-​voice and voice-​to-​text software, and more—​tech that is then picked up by all. Yet we are usually left out of the conversations around tech for disability. There are ongoing calls for universal design, but this design employs and imagines our bodies (often as the basis for professional certification) while rarely (if ever) simply asking us what we need. “Engineering for good” labs design prosthetic hands without ever talking to hand amputees. The public is always ready to ask us why we don’t have whatever hot device has recently been hyped in a feel-​good news story. While our lives are deeply entangled with technologies of all kinds (not just fancy ones: left-​handed scissors or walkers or hearing aids are all disability technologies), disabled people are almost never included in discussions about what technology means and how it integrates into daily life, what it means to be human in our modern world. Sometimes technology is seen as redeeming our lives: nondisabled people believe—​and expect us to believe—​that technology will “solve” the problem of our disability and save us, or those like us, in the future. Yet these expectations often don’t match our circumstances. They confine us. When people assume that one device will “fix” us, they don’t pay attention to the host of other concerns around disability technology—​the bad planning and design, the need for constant ongoing maintenance, the problem of money (Jill’s van, like a lot of disability tech, wasn’t paid for by insurance), and the staggering lack of social support for disability accommodations (Jill’s apartment managers, the police). These are all forms of ableism.

Talila A. Lewis describes ableism as “[a] system that places value on people’s bodies and minds based on societally constructed ideas of normality, intelligence, excellence, desirability, and productivity.” Ableism is a system set in socially constructed norms. Ableism is more than just bias: it’s the entire idea that anything can or should be perfect in this universe of entropy and chaos, applied at the level of human bodies and ways of being. Technoableism is a specific strain or type of ableism, this deeply embedded force for valuing limited ways of being. Like ableism writ large, it informs how we understand and process the lives and stories of disabled people. It informs how we decide who is worthy, who is entitled or deserving, and what justice means when it comes to technology and intervention. It reveals itself in how we rank and value disabled people against each other, and how these values shape our institutions and infrastructure.

In the constant praise and promise of bodies-​fixed-​through-​technology, we see that disabled is a bad state of being, and that disabled people must be altered to be worthy. The Cyborg Jillian Weise writes:

They like us best with bionic arms and legs. They like us deaf with hearing aids, though they prefer cochlear implants. It would be an affront to ask the hearing to learn sign language. Instead they wish for us to lose our language, abandon our culture and consider ourselves cured.

The sharper end of technoableism is that, if one cannot measure up by technological means, then there are technological-​eugenical means for “dealing with” the most unfortunate cases. Prosthetic legs, Prozac, pacemakers, ostomy bags, fidget spinners, heating pads, and wheelchairs are technologies for disability—​and so are gas chambers, institutional confinement, and prenatal de-​selection.

I’ve been collecting my thoughts about technoableism, in one way or another, for the past decade, so my understanding of the phenomenon has been filled with constantly accreting examples and experiences. Most of the chapters in this book are stand-​alone, intended to be readable on their own or in any order. (Why should people be forced to move linearly through the text? Crip aesthetics value nonlinearity.) Yet they all offer “ways in” to conversations about technology, disability, cyborg life, ideas about minds and bodies, and classic themes in the philosophy of technology as it relates to disability. For those not already engaged with these areas of interest, I hope this book will be a useful springboard into various topics. While I draw from fellow scholars, I also draw from blogs, fun with friends, Twitter, entertainment, media, and my own personal experiences as a technologized disabled person—​a cyborg, a cripborg.

Throughout, I consider disabled people the experts about disability. I’m no longer interested in what so-​called experts (nondisabled scientists, physicians, therapists, and so on) have to say. These narratives are already overrepresented, and in some cases, they have done damage to disabled people as a community, disabled people as knowers, and the experience of disability as valid and valuable. When we don’t listen to those with actual experience, we often get accounts of disability and technology completely wrong. Disabled people are “the real experts” (the title of Michelle Sutton’s 2015 edited volume about and authored by autistic people) when it comes to technology and disability. We use technologies. We also reject them, grapple with them, or repurpose them. The views on technology we get from listening to disabled people often look very different from those of people educated in the medical and “helping” professions.

Likewise, the language we choose for ourselves differs from the language others apply to us. Think of how often disabilities and procedures are named after the physician who “discovered” a condition or technique rather than the people who experience it or those who were the subjects of “pioneering” experiments into disability. We are named and claimed by experts who may know our bodies in limited ways, but rarely know our communities, our experiences outside their clinics, or our reception in the world.

The story I want to offer is not clean, smooth, or linear. It’s bumpy like tactile pavers under my walker, shifting like the gravel that rolls and slides under my prosthetic foot, slippery like unplowed sidewalks in the winter. Part of this is informed by my own neurology, as someone with chemobrain. In the “Gotta Catch ’Em All” spirit of Pokémon (we will address Pokémon as a disability technology in Chapter 5, by the way), I am a hard-​of-​hearing, chemobrained amputee with Crohn’s disease and tinnitus and possibly some undiagnosed anxiety or PTSD related to my cancer treatment. Few disabled people have just one disability. That’s important to note because most studies about disability want you to have just one—​which means most studies about disability do not record our data with any fidelity. The word “chemobrain” was coined by former chemotherapy patients, and the neurological change was first recognized by patients, decades before it was “validated” or believed by medical experts. Chemobrain refers to the effects of systemic chemotherapy on the brain—​sometimes short-​term, sometimes permanent. It involves changes to memory, focus, information processing, and cognition. I am grateful to ADHDers and autistic people, who developed and promote the neurodiversity paradigm, which includes under its umbrella all kinds of people with non-​normative neurologies like mine (see Chapter 5) and helps me be okay with myself.

There is so much we learn in the disability community from each other—​not just in our own narrow disability communities, but in cross-​disability conversation. I hope to share some of what I have learned. Not just because knowing is good but because I want there to be more space for disabled existence, disabled creativity, disabled planning, disabled flourishing, disabled life, disabled expertise, disabled everything.

A Quick Guide To The Upcoming Chapters

Chapter 2: Disorientation. This is a good start for those unfamiliar with disability studies and disability activism. I hope to “dis”-​orient you—​and not just through clever puns. I want to shake up the tropey narratives this chapter’s touched on already, and reorient readers to disability-​forward, disability-​led conversations about disability, disability history, and disabled community. So much of what people think they know about disability comes through the lens of nondisabled expert-​scientists about disabled people, and that’s not good enough.

Chapter 3: Scripts and Crips. In this chapter, I really dig into those tired stories about disability, writing about the common “tropes” or archetypes that appear in stories about disability in news and entertainment media, social media, and memes. Identifying these tropes can steer you clear of a lot of cringe and help people do better by disabled people.

Chapter 4: New Legs, Old Tricks. Here I stay with mobility disability for a bit—​the disability that I have the most experience with, and the one that first brought me into community with other disabled folks. This chapter is built around anecdotes from wheelchair users, arm amputees, and leg amputees to counter the unending media narratives that focus on physically disabled people. We see constant coverage of Paralympics and TED talks, and other public narratives of disability usually focus on young, white wheelchair users or amputees. Here I write about the pressure to be (or appear) normal—​to walk, to have a five-​fingered hand—​and explain the real process of getting a new prosthetic limb.

Chapter 5: The Neurodivergent Resistance. I define some key terms about neurodiversity and the neurodiversity movement, then talk about the eugenic history that led us to our current landscape of disability charity work, disability techniques, and disability technology. I address one of the most common approaches to autism intervention and turn to look at what autistic people recommend as autistic-​led, autistic-​friendly autism approaches and preferred technologies. As someone who is not autistic, I draw heavily here from autistic blogs, books, panels, and friends.

Chapter 6: Accessible Futures. My final chapter turns to ideas about outer space, bodies, disability, and technology. I argue that disabled existence is expansive; it provides for creative possibility, especially when planning for more habitable futures for us all.

Excerpted from Against Technoableism: Rethinking Who Needs Improvement by Ashley Shew. W. W. Norton & Company, 2023.