DESSA: This is Science Friday, and I’m your host Dessa.

For all the dark content on our news feeds, humans can get real eager for a feel-good story. And we are sometimes too eager to find one in the coverage of disability technology. You might have seen videos online of a person with a disability being fitted into an exoskeleton, essentially wearing a robot to help them walk. Onlookers might cheer in the background, dramatic music swells, and we get the sense that we’re watching something inspirational and empowering– a victory of the human spirit.

This might seem like an absolute triumph of scientific innovation at first blush. But our next guest asks us to look again at what’s actually going on in narratives like this one. Dr. Ashley Shew studies the intersection of disability and technology and how our collective fixation on these fancy, supposedly transformative gadgets, could be doing more harm than good. In her new book, she coins the word technoableism to get to the heart of the matter.

Joining me now is Dr. Ashley Shew, author of Against Technoableism, and associate professor at Virginia Tech, based in Blacksburg, Virginia. Welcome to Science Friday.

ASHLEY SHEW: Oh, thank you so much for having me, Dessa.

DESSA: Will you walk me through the basics of technoableism?

ASHLEY SHEW: Yeah. So ableism is a bias against disabled people and towards non-disabled ways of life. And technoableism is one strand of ableism that we see– like, I see as someone who studies technology and science– so often in our narratives about what it means to do good and humanitarian work in the world.

But often our narratives about technological infrastructure and new technologies, especially when they’re aimed at disability, get lauded as necessary and empowering for disabled people– as if being disabled itself is something to fight against and to always devalue. So that being a disabled person and experiencing joy and normal things in life become something that’s always spoken up against by our scientific and technological enterprise.

It means that so many teams are lauded for their humanitarian work often without ever talking to disabled people who might use their devices. This becomes a real problem for just existing as sort of an OK regular disabled person in the world.

DESSA: And when did you start thinking about this? Because you coined the term “technoableism,” right?

ASHLEY SHEW: I did. And I coined it a number of years ago. So I became an amputee 10 years ago. I also became hard of hearing. I have tinnitus. I have chemo brain, which I’m going to forget. And then I also got a Crohn’s diagnosis a few years after. All of these things happened to me in the same year, around 2014.

And as I was becoming disabled– I knew three months ahead of time that I was getting an amputation– and people would tell me, think more positively. But it was coming. I had a very large bone tumor. And so many of the things that I was sent and that people wanted to tell me is that, prosthetics are so advanced now, right? All of the stories they’ve heard in the media is– there’s this idea that prosthetics are so advanced and I’ll be restored back to normal and I’ll come back better than ever.

It wasn’t until I talked to different prosthetists– and the conversation was not about how I’m going to be better than I ever was. It was that things will always be different from here on out. The sort of normalcy that I was used to will be changed. My normal will be very different, and that this is something that, for the rest of my life, I’ll get out of bed and I’ll put on a liner and then I’ll put on my leg. And then, if it’s not fitting right, then I’ll readjust everything. It’ll be the first thing I do in the morning, the last thing I do at night– if things are going well with the technology. That’s the hope, right?

But it was never going to be the same again. And we never see narratives like that represented in the wider culture, even though it’s something I hear in the disability community often, right? The idea that things might never be the same is sometimes presented as unsettling and that’s why you should take all of these preventative measures against disability.

When we’re talking about how technologies are poised and positioned narratively, right, rhetorically, against disability, I think it does a real harm to talking about what it is actually is to live with these technologies over time, about maintenance, about manufacturers not producing the right parts, about wear and tear on your cyborgian components.

DESSA: I think I hadn’t really considered the entire class of disability technology as a field before being alerted to it by your book. Can you explain, what is disability tech for people who might not be familiar with the parameters there?

ASHLEY SHEW: When I’m talking about disability tech, particularly that which gets framed in technoableist ways, it’s often high-tech bionic devices, usually exoskeletons, prosthetic legs, different types of retinal-neural implants– cochlear implants among them. Sort of less explored in the literature is things like pacemakers, which are also disability technologies. Things that are outside of me, like ramps, those are disability technologies. And even think about the technologies we create for ourselves. So think about neurodivergent communities creating weighted blankets, OXO grippy-handled kitchen gadgets, designed by Betsy Farber for her arthritis– all of these things are disability technologies.

The ones that I think get the most attention are usually ones that cost a lot of money, have lots of computerized components, and require the sort of maintenance that most people can’t DIY.

DESSA: You made a mention of some games that have had particular resonance with some members of the disability community. You mentioned Pokemon and Dungeons and Dragons. Can you describe why you referenced those in your book?

ASHLEY SHEW: So I referenced those in the book because I’m talking to other people. I don’t know that I would have come up with that on my own. But we had a panel of autistic people talking about autistic technologies a couple of years ago. And the conversation that ended up unfolding wasn’t really about any of the technologies that you would think about– and I loved that this was the result. But instead, it was about what sorts of technologies actually help people not just feel included, but like they’re making an impact on one another. What sort of things help bond and gel?

And they ended up talking a lot about Pokemon and about D&D and also about Discord emojis that help express emotion– for people whose emotions might be harder to read on their face for neurotypical people– to have those sort of things where you could actually create your own reactions and use the features of Discord in a way that help you express emotion.

DESSA: And when you talk about the way in which disability tech is crafted, you’ve been real clear about the fact that designing with is better than designing for. Can you describe some of the approaches in development? Where does innovation go off the rails, and why are we sometimes romanced by the stories that I mentioned at the top of the segment, right, these wow, she can walk again? What are we getting wrong?

ASHLEY SHEW: I mean, these glamorous stories often interview only engineers and scientists or the caretakers of disabled people. You rarely see disabled people interviewed and quoted. And if they do, it’s usually like a very short quote in these stories.

At the front, when we think about where disabled people get recruited into science projects, it’s often at the level of human subjects research. And so much needs to come before that. You’re already at the point where you are testing something, that you have a clear idea of how you would like it to be used, and you’re testing along the lines of use, and you’ve already created it with particular possibilities. And that’s way too late in the process to be consulting the communities that, in theory, you think you want to work for.

Sometimes people are working on things and trying to find a community for it. I think that looks a little different. I mean, so many of these news stories are about ultra high tech, sexy technologies, and we don’t get the technologies that disabled people might care a lot more about.

So particularly in the case of exoskeletons, a lot of people who would be potential users– and of course, exoskeletons are posed as solving the problem of not walking. Not walking is only a problem when there are no ramps, when we don’t have the right infrastructure to include wheelchair users.

But plenty of people are using wheelchairs because they need to sit down more often. Not everyone is paraplegic or quadriplegic who’s using a wheelchair. People with different fainting disorders, where they might fall down and hit their head, and it would be better to use a wheelchair than get a severe head trauma. There are these trade-offs sometimes in thinking about how to use the technology.

So I think it really misunderstands the group that this is for. And then a lot of people who it would be aimed for, like paralyzed wheelchair users, would also say, we’d love to see more research about bowel and bladder health. This is a thing– The Bad Cripple– Bill Peace wrote a lot about, critiquing exoskeletons as being humanitarian cover for military projects and not about disability at all.

DESSA: Oh, that is a heavy, heavy point. And when you talk about the field and maybe also society at large being too excited about these super high-tech, sexy, mega glamour stories, what are the actual needs? Can you differentiate it? You wear a prosthetic. So if someone were to ask you, hey, what innovation would be helpful– it sounds like you’re not going to answer with like a chrome-plated exoskeleton.

ASHLEY SHEW: No, I actually really like the leg I have.

[LAUGHTER]

I think a lot of the conversations among amputees about prosthetics– and I will say, the vast majority of amputees are leg amputees; so I am speaking in a much more narrow way, in fact– issues with sweating are usually at the top of the list; that we are filling our gel liners with sweat each day and taking it off very carefully so you don’t get liquid places, especially when you’ve had a long or hot day. Temperature control is often a conversation.

People want to talk about blister care, right? When you have a leg that doesn’t fit just right or your body has changed– because your body changes– the technology could be great one day and awful the next day. And it’s only because you ate very salty onion rings at Disney World the day before, and now you can’t get on your leg to walk. A true story. Very salty onion rings. Won’t do it again. And I’m icing my leg and reclining and trying to get it back to its normal size in order to spend my second day on vacation.

There’s things that are just overlooked. The idea that you have a great technology, so then you’re good to go, is just never the real story.

DESSA: Yeah, it’s not a complete account. So a big leap– ready? We’re going from salted onion rings to outer space.

ASHLEY SHEW: OK.

DESSA: You write in the book about outer space quite a bit. Which is exciting because, of course, that’s a passion point for Science Friday. You mention the Gallaudet 11. Will you recount that story for us?

ASHLEY SHEW: Oh, yeah. So the Gallaudet 11 are 11 deaf men who were recruited by NASA in the 1960s. And they were recruited and went through all the same astronaut training. But they were recruited because they were particularly good at a particular thing. And the particular thing that they were all great at was not getting motion sick because I think 10 of the 11 were congenitally deaf men, and then the other had lost their hearing very early in life.

And deaf people– congenitally deaf people– don’t get motion sick. So NASA was like, these people are superior. We need to test out and learn from these deaf men so that our astronauts aren’t heave-ho-ing in the space shuttle. So they were recruited because they were superior. They were never considered– none of them were ever considered– as astronaut candidates, but they went through all the same training, being jerked around in different configurations. And the idea was that NASA could learn from deaf people, even though it wouldn’t have considered deaf people for an astronaut candidacy.

DESSA: There’s kind of a double standard there, right? Hey, you’ve got this asset and skill that we clearly recognize as valuable for space training and information gathering. We are asking for your help, but we’re not offering you the opportunity to participate in a more meaningful way in the program.

ASHLEY SHEW: I know the Gallaudet 11 enjoyed participating in this program. I won’t fault it there. I mean, women weren’t even recruited on at this point in NASA’s history. But there is a sense in which, even when disabled people do things better– like have superior skills because of their embodiment– they are still considered inferior.

This is ableism through and through, right? That someone whose body configuration might be equal or better in, say, zero G– if walking doesn’t matter if you’re floating– there’s a whole bunch of disabled people who will be equally good for a mission if we’re talking about something in zero G.

Of course, everyone is disabled in space. If you come back from space, you’re going to be disabled. Your bones are going to be a little bit more lightweight, for instance. The shape of your eyes changes under different pressure. And of course, the sort of radiation a person gets will lead, for a significant time spent in space, to greater disability.

DESSA: This is Science Friday, from WNYC Studios.

If you’re just joining us, I’m talking with Dr. Ashley Shew, author of Against Technoableism, about the intersection of disability and technology.

And Ashley, you mentioned an unexpected advantage that ostomy bags might have in space. Would you talk about that?

ASHLEY SHEW: Oh, yeah. So it’s really hard to poop in space. It’s difficult. Creating toilets for the International Space Station and for the shuttle program was very difficult, often failed. And the backup if your toilet fails is a baggie– a plastic baggie– with some sticky material to stick to yourself, then to help the poop out with like a finger-bag situation. This was in the ’60s and ’70s. This was the backup.

And early missions, if they were short enough, really encouraged astronauts not to poop. The logistics were difficult. And there are whole trainers for how to use the toilets in NASA’s program.

And the thing is, my friend Mallory Kay Nelson, who is a brilliant artist and friend, has an ostomy bag. Our whole conversation about space is like, why aren’t we modifying astronauts to have an easier time by giving them ostomy bags? It essentially is what the backup toilet is, right, something sticky that you put on yourself, but it’s a lot less refined.

DESSA: You write that the future is disabled. What do you mean by that? And how do you suggest we prepare for it?

ASHLEY SHEW: Oh, I mean a lot of things by that. The way I mean it in the book is not just if we achieve our greatest space dreams, we’re going to be disabled. But even if we stay close to the planet, we’re going to be disabled.

We’ve changed our climate. Climate change is happening. It’s changing weather patterns. It’s changing disease patterns. We have higher rates of asthma. We have ticks in places that they usually wouldn’t be, and Lyme disease spreading to more areas than it existed before. So there are lots of reasons to think, the future, whether we’re on planet or off, is going to be a disabled one. Which puts the impetus on us to start doing better at planning for disability and to expect more disability in the future and not less.

So much of our science fiction has given us the idea that the goal of technology is to eliminate disabled people, to eliminate disability, because our visions of the future have often excluded disabled people. But that’s not going to be the case no matter which way we shake it.

DESSA: Dr. Ashley Shew is the author of Against Technoableism, an associate professor at Virginia Tech, joining from Blacksburg, Virginia. Ashley, thank you so much for joining me.

ASHLEY SHEW: Oh, thank you so much, Dessa. It’s been a pleasure.

DESSA: To read an excerpt from, Against Technoableism, go to sciencefriday.com/disability.

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