What needs fixing? Disabled people? Or a built world that shuts them out?

By Louise Kinross

Against Technoableism: Rethinking Who Needs Improvement critiques the idea that technology is a magic bullet that can erase disability. The book is written by Ashley Shew (above), a philosopher of technology and professor at Virginia Tech who became an amputee after cancer treatment. “Technoableism is a belief in the power of technology that considers the elimination of disability a good thing, something we should strive for,” she writes. It’s also a kind of perfectionism that favours nondisabled ways of life, she says, ignoring how we could redesign the built world to include everyone. We spoke about her book in this e-mail interview.

BLOOM: You talk about how our culture, including the medical and rehab world, hungers for stories about disabled people ‘overcoming’ their disability with technology. Why is the belief that technology can end disability harmful?

Ashley Shew: The desire to see technological development and fixing as THE solution to disability allows people to continue to build and justify a world that is inaccessible, or that requires so much more of disabled people in order to exist. It’s convenient to carry this belief—because it means you don’t have to imagine yourself as ‘one of us’ and plan for a world in which we can exist.

If people can say ‘In the future that will be fixed’ or ‘I gave to charity to seek that cure,’ it wiggles them out of the responsibilities they have to make things accessible and to plan for disabled existence now. They can think of themselves as good people without being bothered to think about who they’re excluding through their actions. And there is plenty in our current system that pushes disabled people out of everyday life.

Disabled people shouldn’t have to work so hard, and some of us can’t, in order to exist.

There may be some disabilities, especially those that bring significant pain, where work for a cure is warranted, but disability is a HUGE category, and it’s not one that’s going away. In my last chapter I talk about how there will be more, not fewer, disabled people in the future. It’s worth planning for disabled existence now and in the future, instead of wishing it away in magical thinking that’s often encouraged by current media narratives.

BLOOM: Early in your book, you write: “This is a book about the stories that disabled people tell that nondisabled people usually aren’t interested in.” What did you mean?

Ashley Shew: Many narratives about disabled people set nondisabled people as experts about us, as heroes working toward our good, and as motivating and celebrating us to ‘overcome’ or pass as nondisabled. People gobble these narratives up on social media.

Think: “like and share equals respect” over an image of a nondisabled kid taking a disabled kid to prom, millions of shares for videos of cochlear implants being turned on (which Deaf people argue are misleading), and so many stories and images of disabled people as recipients of care and help.

The image most people have of what being disabled is is to have a body or mind calling out for help. When we are less enthusiastic about their intervention, we are labelled ‘bitter cripples’ or depicted as fakers trying to bilk the system. The larger picture of disability casts disabled people as fundamentally broken and in need of abled intervention. 

Most stories about disabled people, because of the desire for ‘feel good news’ and the implication that disabled people [need] intervention, are written by nondisabled people, often to inspire others or encourage good behaviour. But being at the centre of that, as an object of the help of helpers, is not great.

We need more disabled stories in the world—not stories about disability, but stories by disabled people that let us better witness and respect their agency, expertise, DIY-hacking, and how they navigate worlds not created for [them]. That includes hostile educational spaces, workplaces, public places, digital tools and businesses.  

I don’t think anything I say in this book will be surprising to other disabled people, except that it is published at all.

BLOOM: I liked this definition you gave of ableism: “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.” I had never heard of ableism being likened to a type of perfectionism. Why are we so attached to the idea of perfect bodies when all bodies age and develop problems?

Ashley Shew: I’ve read a lot of definitions of ableism, but there are three that I love, and I hope all three are present in my sort of summary there. 

Fiona Kumari Campbell writes: ‘Ableism is not just a matter of ignorance or negative attitudes towards disabled people; it is a trajectory of perfection, a deep way of thinking about bodies, wholeness, permeability and how certain clusters of people are en-abled via valued entitlements’ (2009).

Also, check out TL Lewis’s definition and that of Michele Nario-Redmond in her book Ableism

Perhaps because I’m very much influenced by a critique of eugenics in the work I do, I think the notion of perfection undergirds a lot of conversations when people aren’t performing in ways we think they should. I think about this a lot right now in terms of walking and talking—both of which are means to an end, getting places or communicating—but can be done in alternative ways.

A lot of the emphasis on walking or talking well is about efficiency (speaking a language others know, and speaking it well) or preference by the dominant culture in how we plan things. We literally make it easier for people who walk well to get around; the disabled entrance is too often around back, and a longer walk.

We set up all sorts of preferences for how work is communicated and submitted. And who we value and invite into spaces and regard as worth listening to are very much shaped by these ideas about the most desirable and best ways to be.

BLOOM: Your main disabilities were acquired through cancer treatment—and include a partial leg amputation. You write about how artificial legs are hyped up in the media, for example with elite Paralympian runners. When you became an amputee, people kept saying that you’d be back even better than before, like a bionic woman. How did that contrast with your real experience?

Ashley Shew: I have a good prosthetist who prepared me for the fact that it wasn’t going to be the same as before—that I would adjust, but that things would be zig-zaggier than I’m ever shown on TV.

If I was good at walking and did it a lot, I’d wear out components. My body would swell and shrink and change weights, and my leg would stop fitting as well as it once did.

The historian Melvin Kranzberg is famously quoted: ‘Technology is neither good nor bad, nor is it neutral.’ And that’s as close to a historical truth as you can find. Technology is ambiguous for many users. It can bring good, but there’s more to it than that, and it’s never as linear a story as gets told in most places.

I’m happy with my leg—but know that much of the reason it fits well is my prosthetist’s skills and willingness to listen to vast experience. We also lose that in celebrating every incremental material improvement as ‘life changing.’ And I know at some point I’ll be unhappy with the leg I have because my body has changed, and it will no longer fit like it does now.

BLOOM: I have an adult son who is nonspeaking. Despite years of trying with different voice devices and speech apps, we never found one he could use reliably and easily. He prefers sign language. I’ve always felt a failure because people assume there’s a voice tech that is easy and intuitive to use. During the pandemic my son stopped wearing his hearing aids. With everyone masked, it was hard for him to decipher what they said with only his aids. His audiologist says he should wear them, but we respect it’s his personal choice. It doesn’t seem there’s much space for people who fall outside cultural expectations for how they use technology.

Ashley Stew: I also stopped wearing my hearing aids during 2020 (and wore them only for certain types of activities before then). With meetings on Zoom, I can just turn up the computer volume! 

Audiologists do tell patients they need to wear hearing aids all the time (except sleeping and water-related activities), and I never have done that for more than a week. Wearing them in some situations is overwhelming/exhausting, and not all things are good to hear (like chewing at the dinner table or the woosh of compressed air).  

I’m totally with your son on this. I like how Jen Lee Reeves talks about prosthetic arms as ‘tools that can be useful sometimes.’ It just builds so much less expectation to see a piece of assistive or disability-related equipment that way. It allows disabled people to find what works for them. 

BLOOM: How can scientists in children rehab avoid the pitfalls of technoableism?

Ashley Shew: There are two things my friend and colleague Rua Williams talks about that really ring true to me here. One is the importance of humility as a regular practice in professional life, and the other is about friendship as a method.

So often, even in disability community, we have to learn to listen to each other and work together. Sometimes this won’t look like friendship, but often it does mean spending time in dialogue and conversation; this is often not about our bodies or minds so much as about activities, policies and infrastructure, and what we’d like to see in the world. We learn so much about cross-disability work in conversation here.

It’s important to beware the narrative traps around disability that you can get stuck in—so many involve viewing disabled people as lesser, or in some cases as so much better/more inspiring/resilient (often with a built-in surprise that disabled people can do things). But disabled people are just people. It’s hard to always be exceptionalized, and that leads to exclusion. Even when someone is being heartily celebrated, it can be abnormalizing. I see this particularly with kids, who we want to encourage. 

I would recommend that any researcher look to the expertise of disabled adults. There are so many good memoirs like Poster Child by Emily Rapp,  Just Don’t Fall by Josh Sundquist, Too Late to Die Young by Harriet McBryde Johnson, The Pretty One by Keah Brown,Year of the Tiger by Alice Wong, Born Just Right by Jordan and Jen Reeves. Some excellent nonfiction written by disabled writers includes True Biz by Sara Novic, Accidents of Nature by Harriet McBryde Johnson, and Good Kings, Bad Kings by Susan Nussbaum. I think those are good places to start rethinking what you think you know. There’s a wealth of other poetry, blogs and disability-led groups that would be good resources too. The Disability Visibility Project is a good place to start.

Researchers can do a lot of harm in their own social ignorance about disability, and it’s important to understand disability in a historical and social context, rather than a narrow functional frame. So many of us are evaluated in that functional frame when we spend time with researchers. 

BLOOM: Although you’re not autistic, you have a chapter called The Neurodivergent Resistance. One area you look at is applied behaviour analysis. You contrast what autistic adults say about how it damaged them, with its endorsement from the medical field. You include this quote from an autistic writer: “My childhood and adolescence were steeped in the politics of shame… I was told to have ‘quiet hands,’ to stop expressing myself in my natural, autistic way. I never knew why having loud hands was ‘wrong,’ just that it was.’ How can we work against the idea that different ways of being in the world are shameful?

Ashley Shew: This is from Finn Gardiner. I love his writing! Because ableism is what we’re all marinated in, working against internalized ableism can be tricky. I love how Finn articulates coming to his self understanding. There’s a great poem by the late Laura Hershey that we often read in my disability groups called You Get Proud by Practicing.

BLOOM: You write about returning to your university campus with new disabilities and how you felt unwelcome and alienated. You say ‘Every place was unprepared for me.’ Why is planning for disabled students not a priority for universities?

Ashley Shew: Academic ableism is no joke. Universities are often seen as places that promote culture and inclusion, but there are deeply entrenched notions about who belongs in an academic space. Ideas about rigour and intellect and professionalism in these spaces can make it outright hostile, especially in some disciplines.

I remember one faculty senate meeting where disabled student accommodations were being discussed. One professor told a story where she painted herself as a hero for taking away a student’s crutches because she didn’t believe he needed them. She wanted to show he was faking. I pretty much shut down for the rest of the meeting.

If they think that about students, they must certainly think that about their fellow faculty too. For someone to be so out of pocket proud that they acted in a discriminatory manner—whew.

So many people think it’s easy to get accommodations or disability benefits. It’s really hard, and using them can come with consequences. You’ll be called a moocher or faker. It’s terrible. I’m hopeful that things are shifting, but I see the shift much more among college students. 

Jay Dolmage has a book called Academic Ableism where he says a lot more on this topic than I can.

So many buildings [on campus] are executed as architecturally beautiful and then access is retrofitted, but a retrofit just announces that they didn’t plan for you initially. It can be degrading when all around you is retrofitting, and never a plan from the start for people like you to be here.

Anita Cameron, a legend in disability activism, was brought to give a talk last week to our campus, which was amazing, and I’ve been playing over this message from her in my mind for the past week: ‘You erase us at your peril.’

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