Factually! with Adam Conover - What Tech Gets Wrong About Disability with Ashley Shew

Episode Date: December 13, 2023

Over 34 million disabled Americans, but despite the commonality of having a disability, there's still a social tendency to want to "solve" disability out of view with technology. As useful as robotic limbs or exoskeletons for walking might seem on paper, they don't always consider the practicalities of living with a disability. In this episode, Adam speaks with Ashley Shew, author of "Against Technoableism," about how technology is best suited to make an impact for the disabled and when it's only used to hide disability to make the abled more comfortable.Today's episode is sponsored by NordVPN, try an exclusive offer available to Facutally! listeners at https://nordvpn.com/adamconoverFind Ashley's book at factuallypod.com/booksSUPPORT THE SHOW ON PATREON: https://www.patreon.com/adamconoverSEE ADAM ON TOUR: https://www.adamconover.net/tourdates/SUBSCRIBE to and RATE Factually! on:» Apple Podcasts: https://podcasts.apple.com/us/podcast/factually-with-adam-conover/id1463460577» Spotify: https://open.spotify.com/show/0fK8WJw4ffMc2NWydBlDyJAbout Headgum: Headgum is an LA & NY-based podcast network creating premium podcasts with the funniest, most engaging voices in comedy to achieve one goal: Making our audience and ourselves laugh. Listen to our shows at https://www.headgum.com.» SUBSCRIBE to Headgum: https://www.youtube.com/c/HeadGum?sub_confirmation=1» FOLLOW us on Twitter: http://twitter.com/headgum» FOLLOW us on Instagram: https://instagram.com/headgum/» FOLLOW us on TikTok: https://www.tiktok.com/@headgum» Advertise on Factually! via Gumball.fmSee Privacy Policy at https://art19.com/privacy and California Privacy Notice at https://art19.com/privacy#do-not-sell-my-info.

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Hello and welcome to Factually. I'm Adam Conover. Thank you so much for joining me on the show again. This week, we're talking about disability. You know, we've all seen these videos that have been coming out for decades. The government or some high-tech company trots out a veteran with a missing arm or leg and says, ooh, look at this expensive robot arm we've built. Look at this exoskeleton. Now this poor soul can be a normal like you and me. And then the veteran lifts their robot arm and flexes their robot fingers.

The crowd gives a standing ovation. And then we all go back to our normal lives, secure in the fact that this disability has been solved. Now, needless to say, this is a supremely fucked up way to present disability. These demos hide and ignore so much. I mean, you don't even hear a disabled person's voice in them unless it's to say, thank you so much, sir. They also avoid questions of cost and access. And worst of all, they present disability as a simple challenge to be simply fixed, to be wished away. But these

demos don't present a solution at all. They just present a comforting fiction to those of us who don't yet face these problems. And here's the thing. Disability is not rare. 13% of all Americans are disabled. That's over 42 million people. And the older you get, the more likely it is. Live long enough and there's a very strong chance that you, yes, you will become disabled. As you get older, your hearing, vision, mobility and cognitive capacity are going to decline. And when these things do happen, you're not a heroic vet on a stage with a robot arm. You'll just be a regular person keeping up as best you can with a world that might make

little accommodation for you. Some of you listening might be in that boat. I myself have been diagnosed with learning and visual disabilities, and I know that there is no magical solution. I just have to try and keep up. We live in a culture that seeks to hide and solve disability out of existence, and it's bullshit. And in order to change this culture, we first need to understand it. And our guest today is going to help us do that. She's going to help us reframe how we think about disability. She's an absolutely incredible thinker. Her name is Ashley Hsu. She's a professor of science, technology, and society at Virginia

Tech who specializes in disability studies and technology ethics. And her new book is called Against Techno-Ablism, Rethinking Who Needs Improvement. I know you're going to love this interview, but before we get to it, I just want to remind you that if you want to support this show, you can do so on Patreon. Head to patreon.com slash Adam Conover. Just five bucks a month gets you every episode of the show ad free, plus a bunch of other great community perks as well. We'd love to see you there. And if you love stand-up comedy, please come see me on tour this year. Coming up, I'm headed to Arlington, Virginia,

right outside of DC, Boston, Philadelphia, New York City, Chicago, Nashville, and Atlanta. Head to adamconover.net for tickets and tour dates. And now let's get to this interview with Ashley Hsu. Ashley, thank you so much for coming on the show. Oh, thank you so much for having me. I'm really excited to talk to you about disability and ableism. It's one of my favorite topics. It's been a little while since we've for coming on the show. Oh, thank you so much for having me. I'm really excited to talk to you about disability and ableism. It's one of my favorite topics.

It's been a little while since we've covered it on the show. You have a new book out called Against Techno-Ableism. I assume this is a word that you've coined. I love new words. What do you mean by this word? Yeah, so techno-ableism is this word that I did coin. Thank you. But I don't think I'm describing anything new if you're

a disabled person. I'm describing something that lots of people are noticing, which is the fact that if you're disabled, everything that is marketed to you is supposed to be life-changing. Every single technology for disability that we hear about, even if it's not stuff that we're going to particularly want, is marketed as things that are going to fix us, change our world, make things so much more easy and better for us. And it suggests all the time that there's something really wrong with being just disabled and okay. It suggests we always need intervention, even if we're just happily going along in our lives. And it makes disabled people always seem like we're calling out for

help in the way technologies are marketed, thought up, and described. And I think there are lots of people who are writing in this space. There's some really great history written by Jaypreet Ferdi at University of Delaware about hearing devices throughout history. I don't end up talking a lot about hearing devices in the book because I think there's actually lots of great writing about hearing devices. So I mentioned these things. But I look specifically at sort of devices aimed at walking. So prosthetic devices and exoskeletons. And then I look at different approaches to thinking about things like neurodiversity and neurodivergent conditions and how we think through these often, often like reiterates a certain ableism in the approaches

that we take. So let's keep diving into that. What is the problem with some of these walking devices? Do you have a specific example of the mistake that is being made? Because it seems like it's something that would be very natural on its face. Someone can't walk. Oh, let's build a device to help, right? Yeah. I mean, so a lot of these devices assume a lot about a condition that very few people embody. So a lot of exoskeletons are posited on paraplegic, quadriplegic bodies. Wait, can you describe what you mean by an exoskeleton and what this sort of device might be? So sort of like something that you put your body in and it stands you up

and helps you walk around. Some of these are highly computerized devices. Some of them are like more passive exoskeletons. There's actually some diversity within this space, but they all see the answer to wheelchairs as exoskeletons. Like that there's a problem with using a wheelchair. And a lot of times the way that they are covered in media is to talk about now people don't have to use wheelchairs. Wheelchairs are actually a really great device that take people places. So it sort of denigrates a disability technology that already exists. And at the same time, if it's aiming broadly at wheelchair users, many wheelchair users aren't using wheelchairs for issues of paralysis. There are plenty of people with POTS or with other issues where standing all the time is actually bad for them.

You might fall over and hit your head. And, you know, so you might be using a wheelchair, not because your legs don't work It's doing a very different thing. And the question, you know, for a lot of people who, a lot of disabled people who are writing in this space is like, who is this really made for? Because particularly if you're looking at, I really love the blog that's called The Bad Cripple. Bill Peace, who has since passed, wrote a lot about exoskeleton devices as a paraplegic man. And talks about how if science and engineering want to invest in research for people like him, that they would be better off talking about bowel and bladder health. To work on issues about pressure sores, right?

The things that end up being much larger challenges in a person's life than walking. There are all these other things that call for more attention that no one wants to talk about or pay attention to because they're not as glamorous. You can't get your big engineering team and those photo ops on something related to bladder health quite as easily. That doesn't play in the media quite as well. So we get these stories that sort of glorify big engineering teams taking on these humanitarian goals of helping people walk again. But the question is, like, who are they helping? And the second thing is, like, they often show real ignorance

about the experience of disability. So at one point on the West Coast, there was this great disabled hackathon where Corbett O'Toole was one of the disabled activists who was involved in it um and it was about like really centering disabled people's needs and um it was you know participate like it was a mostly disabled team and like the thing that they decided that they were going to work on um you know the thing after the discussion what what was the greatest need in the community um it was a lift to get female wheelchair users onto toilets so that they could toilet themselves.

Right. That was the request. Like, let's come up with this, you know, open source device that anyone could build that helps people get into a toilet. And so at one point I had an exoskeleton, like I teach a class on technology and disability. And I just had a picture of an exoskeleton and we had been reading from different disabled people and the picture was up on the projector. And one of the students in the class was just looking like dumbfounded at this. And they say, how does a person go to the bathroom in an exoskeleton? And the answer, and the answer

for the exoskeleton that we were looking at, and it was one that had been produced commercially, the answer was the person is going to have to go take off the exoskeleton, sit back in their wheelchair, wheel themselves into the bathroom, put themselves on the toilet, get themselves off the toilet, get back to the exoskeleton and put it on. Get back to the exoskeleton and put it on. Right. Obviously, people hadn't thought about, you know, walking around is great. But what do you want to do when you're walking around? Like it wasn't an advantage. Right. You couldn't you couldn't do a basic human task. And meanwhile, the actual folks who are wheelchair users are saying, hey, what I really need is the part where I get out of the toilet. That's the actual problem in my day. So what do you mean when you say that these devices are made for, who are they for? Right. The implication that you're making is that they're for the people who invented them or who are developing them in some way. And could you expand on that a little bit? Well, I mean, if you're Bill Peace and he's not the only one to observe this, you have to look at who these devices are being funded by.

And a lot of exoskeletons are being funded by the Department of Defense or DARPA. And Bill Peace would tell you that this is really some sort of humanitarian cover for what is building super soldiers. building super soldiers. So actually, like a lot of times the disabled people like, oh, this is a nice story that sort of covers up what the ultimate goals of a technology are. Right. It's a way for the engineers on the team to feel good about a project that maybe we shouldn't be feeling that good about. It also I mean, so much of the time I talked in the intro about these tech demos I've seen my entire life about like, look, we've built a prosthetic arm for veterans who have lost an arm, you know, or whatever. And the question that is never asked in those demos is why is this person missing an arm? You know, like this person's a veteran, right?

They have suffered an injury, a disabling injury. Maybe that's the maybe we could look at that end of the problem. You know what I mean? Rather than, you know, DARPA funded, you know, high tech fixes. There's there's always sort of a question missing there. Yeah. And so there are a lot fewer arm amputees than there are leg amputees. But there are a ton of projects related to the creation of arms. And part of the reason is, I mean, because most amputees are leg amputees, you can actually get better prosthetic legs. Like the field is more advanced when it comes

to prosthetic legs, so you have more people to try them on, right? But when it comes to prosthetic hand devices, there's also a lot of people who want to like DIY and 3D print. And the thing is, if your hand fails, you drop something. Right. I think about a lot of these projects as being fun for engineers to think about and to think about themselves or arms. I mean, part of that is insurance. You're much more likely to get coverage in the United States for a prosthetic leg. There's also a lot less legs need to do. Right. So my leg, I need to stand. I need to sit. I don't care about running, running's terrible. Right. There's a couple of things that my leg needs to do. Hands do lots more things than legs do. So the sort of like finding a good replacement for this thing that does so many other things is actually like a design issue. But then there's also like a lot of people like adapt and use lots of different tools, right? You have the cutting boards with spikes that you like slam something onto, then you just cut with your other hand, right? And lots of people, there are more congenital arm amputees than leg amputees. So a lot of people have their arm amputations, limb difference from

birth. And that means that a lot of times they adapt and know how to do a whole bunch of stuff that if you are a new arm amputee, you need to pay attention and watch what they're doing so you can learn. But a lot of disabled people adapt to what they have. That means we also adapt to the tools that we're given. And sometimes you have people who are using really old-timey throwback tools because that was what they got when they were young and that's what they mastered. So there's really a wide realm. And a lot of times disabled people are really stereotyped, right? Like, oh, if you're an amputee, you're going to need X. And that's not necessarily true. We can make lots of different choices. But a lot of the ways these technologies are marketed and understood really suggest that there's

like a one-to-one matchup between different technologies and disabled and different disability types that I don't think really exist. Like the things that we exchange in community, the tips and tricks, um, often end up like having cross applications in ways that the people who are designing for us without any of our input, like really fail to account for. Yeah, it seems that the people who are making this technology, and by the way, I'm sure there's people who are doing a better version of what you're talking about out there, but we're talking about the people who are making the mistake, right? And those who are making the mistake are, it almost seems as though they're fantasizing

about what disabled people need. They're looking at a disabled person saying, ah, this person can't walk. This person is missing an arm. This person can't see that. I would feel bad if that was me. What they need is some device that turns them back into me. They need a prosthetic that like exactly duplicates the hand. They're making a very sort of basic assumption which is maybe very natural if you have that level of ignorance but um it's like a really strong assumption about what is actually needed uh which is as you say to fix the person right can we talk more about that assumption like where does that come from oh Oh, I mean, ableism is pretty deeply embedded in everything.

It's like actually hard to talk about. Yeah, this is the root of ableism. Yeah. And, you know, so when I talk about ableism in my classes, I like to say that ableism is the sauce we're all marinated in. Disabled people also experience lateral ableism, internalized ableism. also like experience lateral ableism, internalized ableism. Like it's not like we're born free from the sort of prejudice that like exists all around us about other types of disability, about sort of, you know, and a lot of these things are reiterated in school environments. A lot of these things are reiterated in medical environments, but even regular social interaction, you know, we've been taught to devalue disabled testimony, disabled voices, and so many of our stories about disability, A, when they have any disabled people constitute like 15 to 20 percent of the population right at any given

time and the dearth of stories about disabled people is is alarming like just to be regular like side characters or main characters and who happen to be disabled is is so rare and even when we have disabled characters who are written it's usually for like a very special episode of something um or it is you know it often falls into one of a number of tropes i have a chapter on different tropes about disability um in this book because even when we think we're doing what's best for disabled people um often that's really been informed by uh media representation that's really very skewed about what disabled people need and sort of disabled people's relationships with non-disabled people right as sort of like always calling out

for you but everyone has needs right everyone you know experiences a lot of the things disabled people too but disabled people are really like exceptionalized stigmatized um and you know often are encouraged to pass as well as possible right to downplay any disability and some like there are so many tropes that like really revolve around overcoming disability where overcoming disability means being less disabled right there's there's it's wound up with with um sort of anti-immigration sentiment the way people are um um discussed it's bound up with white supremacy um so sort of like the sort of way in which we value different people and groups of people often is like legitimated based on sort of anti-disability trope. So we have a whole history of IQ testing that white European men do better on IQ testing. Surprise, they wrote the tests. There's a whole history of

that being weaponized and used to justify, well, we want immigrants from these places, but not these. And that is based on like sort of ideas about intelligence that are actually very real to the world. Um, there's a long history of like using BMI in this way too. Um, um, and one, I feel like is very much ongoing for both of these things. When you say that, uh, 15% of people are disabled. Um, it raises the question for me of, of who identifies themselves as disabled. You know, how are we even making that categorization? I mean, I spoke a number of years ago on an older version of this podcast with, with Judith human before she passed away. And, and it was a really revelatory conversation for me, um, obviously, uh, legendary, uh,

disability rights activists. For those who don't know, please go back and listen to that episode if you haven't heard it. But, you know, she made me confront the fact that I don't think of myself as disabled yet. I have a vision impairment. That's, that's very serious. That's part of why I don't drive. I have a learning, I have ADD, I have a learning disability. Maybe those things combined are why I don't really feel comfortable driving along with the fact that I, I hate cars and car culture, but you know, there's there, but, uh, you know, I, but I, you know, I'm not, I don't have just, you know, disabled in my Twitter bio. Right. Um, and she, she also pointed out, this is the, you know, one of the identities that

almost everybody will join as you age, right. As you age, you will, you are likely to become disabled. Um, and you know, I've had a age, you will, you are likely to become disabled. Um, and you know, I've had a complicated relationship with that because I'm like, okay, well I'm not medicated anymore for the ADD, but I get along fine. You know, I have my coping mechanisms. I have, you know, lenses obviously for my eyes, um, et cetera. Uh, and so it may, you know, when I started thinking about that, um, it makes me confront like, okay, what is my relationship with disability and then what is everybody else's? And is that 15 percent potentially a lot larger?

And is the reason it isn't is because of ableism overall. So that's my what I'm coming to it with. I would love to hear your thoughts on any of what I just said. I mean, I do feel sometimes like I'm always recruiting disabled people because you go over that and like, you're disabled. You know, come sit with us. But there's like so many ways in which, you know, I don't necessarily need everyone to pipe up and say I'm disabled. But I do think that there's something really powerful in thinking about yourselves as part of a disability community. Right. I think about all the things like I have chemo brain.

It quacks a lot like ADHD. I talk about that in the book too, where I am listening in anytime any of my friends with ADHD is speaking about their disability. I am leaning in to get whatever tips and tricks they are using to try out in my own life. Right. Like I know that these are the people, like, this is the neurotype I need to pay attention to. You know, and I think there's a difference, you know, also in talking about sort of impairment and disability. I think

when we adjust, we don't always experience our disabilities as impairments, right? I don't think that's true in all cases, but I think about this a lot with chemo brain. Like I have brain damage from chemotherapy. Like that's not something I'm getting out of. That's like the state of things. I had chemotherapy 10 years ago, right? It's not getting better. You know, they always tell you after you finish chemo, oh, let's just wait a year and see if you are still experiencing this symptom. Yeah. And I was and am and will continue to. But in my first few years, it was awful, right?

Because I hadn't figured out how to manage this thing. how to manage this thing. So my friend, Liz Spangola, who was in disability community with me on campus, and we did different disability advocacy in our community, every time she would talk and say things that she was doing, I was like, oh, oh yeah. And so all of a sudden, I'm programming the time my kids need to get picked up from school into my phone, right? I'm doing what Liz does, right? She programs all these things into her phone by day of the week so that she shows up places on time and doesn't leave her kids at school. Actually, she didn't have kids, but she doesn't have kids.

But I could imagine how I could use what she was talking about. And I don't experience my chemo brain as impairment in the way that I did, right? I have different fixes, right? And some of them are technological, like I'm using my phone. It's not a specific app for disability, but it is using it for a disability purpose. And I find like the things that we exchange in community are often much more powerful. You know, there's also, you know, people with ADHD, I mean, they have options in terms of medication, but there's also, you know, people with ADHD, I mean, they have options in terms of medication, but there's also, what is it? It's called body doubling, where you schedule time for a friend to come over so that you

can complete a chore. Your friend doesn't help you with that chore, but having someone there and you saying, hey, I'm going to complete this chore means that you're going to do the chore. You know, sometimes we do writing groups because I'm in an academic environment and we all need to do writing and it's impossible to sit by yourself and write. If you're sitting with your friends, you're getting a lot more writing done because you said you would. And the peer pressure of that produces. Yeah. I write so much better when I'm writing with another person. That's why if I'm working in a writer's room or with another writer in my comedy writing, um, it goes much better because we are, you know,

it helps me focus. And when I get distracted, the other person can pick up the slack a little bit. Whereas solo writing, I experience, you know, as kind of hell, I mean, and so do, so do people who don't have ADD. I think writing is one of the worst tasks anyone can ever do. But it is, I, you know, I, it's funny because I have not thought about that as an ADD coping strategy. And yet now I'm realizing that it is. And so I, I just find it interesting though. I'm sure I have plenty of ableism, right, that I'm a very functional person in my life.

I treasure all the things that I can do. I'm very proud of them. And I know that I have a bit of a fear of, you know, being, you know, like losing ability. Right. And I also sort of recognize, oh, that might cause me to sort of push down these other things as me conceiving of them as disability, which is, you know, I'm sort of, oh, no, that's not me. That's not me. No, no, no. I'm I'm a I'm a regular. You know what I mean? I can do whatever. And that's I think that's part of the entire psychological problem that you're talking about that leads people to make this error is conceiving of themselves as separate from truly disabled people. Is that is that making sense? Yeah. And I think a lot of disabilities are really zigzaggy variable.

And a lot of our representations of disability are really static. Right. So we don't have a lot of representations where some days you get up and you're fully functional and the next day you have to stay in bed or you have a pain flare or your Crohn's disease or autoimmune condition is all of a sudden upon you and you might need accommodations today when you didn't yesterday. We don't actually have very many representations where a person's experience of their disability varies over time. We have the sort of dramatic, they become disabled, right? Or are cured and it's like blinking in and out. But the sort of long-term variable disability, which is a lot of disabilities,

even if you have something like, I'm an amputee. Some days, some days everything's going well and my leg fits well and I'm walking around like the normals and all those, you know, two-legged assholes out there. I'm just like them. And then like the next day, I like I ate too much salt because I flew too close to the sun and all of a sudden I can't fit my prosthesis on or it's tight. It's uncomfortable. Or because I had such fun yesterday, like I have some metal in my hip, right? And all of a sudden my hip aches. It's the same disability, right? And I say, oh, I'm an amputee. Sometimes I get

hip pain, but I don't always have hip pain, right? There's this sort of like, even if I'm experiencing something that people think about is really static right i have a particular like level of amputation and that's not really going to change unless if unless if i get a pressure sore and i have to get a they call it a revision when you need a second amputation above your original amputation site which is just such like whenever i go to do revisions on a document now like i'm haunted by this particular idea like you're just going to cut further up and we can get it right this time. You know, sometimes amputees also become more amputee like in some way, like an additional

badge on there. But like in general, like this is static and it's unchanging, but it also like that doesn't mean my status around it. Like it's always the same. So I think like, especially for when we're talking about things like ADHD, um, you know, most people experience that in a ziggy zaggy kind of way. Right. And so it's really hard. I know like, it's really hard for people to ask for accommodations because you say, well, I can do this sometimes. Right. And that's, that's a little internalized ableism. You're like, well, I can do it sometimes. So I don't need that help. Right. And therefore, the one time I can't do it, it's my own fault. Right. Yeah. And then you can, you know, push that back on yourself. And I feel like we just we need more representations where disability is like zigzagging more. And we also do this thing where we, you know, if you've done it once, you should be able to do it again. We also do this thing where we, you know, if you've done it once, you should be able to do it again.

That's not true all the time, right? You know, with different levels of fatigue, different situations in your life, you might not be able to do the same thing that you did before in the same way you used to. And we have such a, like we, a lot of people really want a police disability, right? I see this around disabled parking on a regular basis. I've had to explain. At one point, someone was complaining to me that everyone took all the disabled spots during a rainstorm and they were just being lazy and didn't want to get rained on. And I'd just like to suggest as someone who experiences hip pain related to weather, that sometimes people are walking further because they can walk further on a given day. But a lot of times with weather-related pressure changes, a whole bunch of people who have arthritis, who have different metal implants in their body,

they're experiencing the weather different. They're experiencing it in a embodied way, and they're going to need disability parking. They they probably don't need it all the time. Right? If they're not regularly parking there. And so disability parking gets really crowded on rainy days. But I don't doubt that all those people are disabled. Right? Yeah.

There's always... There's people who want to also rank which disabilities matter more than others. We see a lot of lateral ableism even within disability community where some disabilities are more stigmatized or even seen as less valid. Do you have a general example of that without calling anybody out? Yeah. So lateral ableism is something when I see, and this is sort of the classic version of this, is someone who's physically disabled saying, but it doesn't affect my mind. With the suggestion that in fact, they are ranked

higher somehow than people who have disabilities that affect their cognition in some way. And it's kind of shitty to do to other people. Because I don't think any of these hierarchies make sense in an enduring kind of way. We'll have different needs. It's okay that we have different needs. That doesn't mean that your disability counts more than mine does. If I'm an arm amputee, disability parking is probably not going to help me. It's not going to even the playing field in terms of my energy in a given day, right? So arm amputees generally

don't have disability placards and that makes sense. But for people who have trouble walking long distances or who get out of breath really easily. So people with COPD and that kind of thing, like having disability parking can mean the difference between being there or not. And that is, you know, they just have different needs. It's not that one counts more than the other. Well, that brings a question of mine for me that really cuts to the core of the definition of disability that I'd love you to answer. But before we get to it, we have to take a quick break. So we'll be right back with more Ashley Shue. I think that was a pretty good tease for the second half of the show.

I hope you agree. We're back with ashley shu um so we were talking about you know ableism generally uh how different disabilities affect people differently but something that i've been rolling around in my mind for a while is isn't the definition of disability somehow bound up in the world that we live in right because if you are able to do something versus not able to do something that can be because of the built environment around you or the accommodations that are, that are given to you, someone who is, you know, has a difficulty reaching very high. Well,

if there are no things on high shelves, they are not necessarily impaired vis-a-vis that, you know, particular task, right. Or, you know, I have a friend who's a, a dear friend who's a wheelchair user and, you know, the right curb cuts make all the difference, right? In terms of his ability to get around. And when I think about my own disabilities, why I don't often think of them as such, it's because, well, in most cases, you know, I, well, I have corrective lenses and I have other ways I can get around, et cetera. Is that, is that not a big piece of the puzzle? notions like in our social world. So social barriers, but infrastructural barriers that sort of impact like who is experiencing the world differently or in an alternative fashion than the other people around them. And I think there's, you know, I talk a little bit about the social

model and I love the social model. I don't think there's like one overriding model for disability that we're all going to agree on and that will be satisfying for every type of disability. But I like the social model because it gives us things to work on, right? And it suggests that it's not all up to the individual, that there are lots of ways in which you can negotiate space and change different attitudinal barriers so that you can make progress towards disability inclusion. You know, I think even if everything were set up in the most inclusive way possible, you will still have people who experience long-term pain, right? You will still have,

you know, people who cannot work a sort of like regular work day. You will still like, even if we have like very modified sort of work days, which we should, a very flexible time, which we ought to, you're still going to have people who are outliers in some sense. So I like the social model because sort of like we get ideas about universal design. Like we like revise the world in a particular way and more bodies can exist comfortably. If we make flexible schedules, if we use universal design for learning to include more people in classrooms and make it easy to turn in assignments and do a lot less like bullshit in terms of like the barriers towards entrance, like oh, you have to put things in this font in this, you know, like there's so many like small things

that people require in education that just seem completely worthless to me. You know, if we said all of these and we give the notes ahead of time and like even if we did all of those things, I think you will still have people who experience particularly painful conditions and in like energy related disabilities that that, you know, they'll be better included, but it's not going to, you know, take everything away. So I do see that there are lots of shortcomings to the social model, but I think it's really useful for political action and to sort of think about technology too, because as a disabled person encountering the world, you know, yes, I'm wearing some of the technologies that I'd like to take advantage of. Some of them work better than others. And I think we also forget that a lot of disability technologies require a lot of maintenance and care and a lot of work in the part of the disabled person to use them. But I also want to have a world in where, you know,

I should be able to exist in several formats, right? If I want to use a wheelchair on a given day because of different issues I'm having, I should be able to switch, right? And not have a problem. My friend Mallory K. Nelson talks about this idea of transmobility. And it's a really lovely idea. And she's one of my fellow amputees. She's multiply disabled as well, just like you are too. I'll hit on that in a moment.

But she talks about how we actually have more choices in terms of how we move about in the world than non-disabled people do. So if you're a leg amputee like she and I are, you might use forearm crutches. You could use a wheelchair. You could use a prosthetic leg. You could use a combination of these devices and you can appear in different formats at different times. And it might not say anything like about you or what you believe about yourself that you are appearing in that embodiment like on a particular day. So she switches a lot between her wheelchair and crutches and forearm crutches.

She can go so fast on them. She can go downstairs on those. Like, I love watching her on those bad boys. She's an amazing crutch user. I met her when I was a fairly new amputee and she had been one for two decades at that point. And I was just so impressed with her skills. But she moves really fluidly. And a lot of her choice is about um like what she plans to do that day is she going to go a really long distance well then she's using her wheelchair and then she's like a special thing that she tucks her her crutches into her wheelchair um um that had to be hacked by

someone like that was not a standard wheelchair thing to have your crutches click right into your wheelchair but at some point um she got someone to put on what i think is a uh like a holder for brooms um which is the perfect size for her crutch um um that she got to like drill into her wheelchair and screw onto the side and it works great as a hack that's not something they offer because they they only expect one form of mobility insurance will pay for one thing right and this is like a really real impediment like i have to decide what my embodiment is going to be for the rest of right for until until i can afford a new device and some of these like like we're talking wheelchair that's custom right um

you want something if you're using it all the time um you know she went back and forth with her insurance for a long time because they were willing to pay for a prosthetic leg. And she is a hemipelvectomy, meaning half of her pelvis. She's the highest level. I love that we call it highest level because it sounds like she's a wizard, right? She's the highest level of leg amputee. leg amputee uh but it means like she would need a hip joint a knee joint an ankle right those are those are the expensive pieces on on a prosthetic limb um her insurance would have paid for over a hundred thousand dollars of leg equipment but they would not pay she didn't want the leg um because of course it's very high up and there's not a lot to hang that prosthetic limb on once you have that high of an amputation right so there's like a cost to wear um and it's very high up and there's not a lot to hang that prosthetic limb on once you have that high of an amputation. Right. So there's like a cost to wear and it's very heavy, hard to move in.

She wanted to get forearm crutches with like shock absorption that would really help her preserve her rotator cuffs, her wrists and all of this. So a thousand dollars for a pair of forearm crutches. And she was like, hey, insurance, could you pay for these forearm crutches? I do not want the prosthetic leg. I would like this other thing that has more value to me, even though it's like 1% of the cost. And insurance said no. Insurance says no. Because they will pay for more expensive forearm crutches. They will pay for more expensive forearm crutches. They will pay for your basic level forearm crutch,

which is like $80. And why, why would they rather pay a hundred thousand dollars for a high tech solution than a thousand dollars for a forearm crutch? Obviously there's some bureaucratic problem. If you ask anybody at the company, they would get it, but there's some policy choice being made further upstream.

And so what is this? What is the source of this obsession with this sort of high tech fix? Because almost every amputee that they've seen is, and scare quotes here, overcoming their disability with technology. Like we're being sold a story about technology as well as a story about disability, right? We're being told, you know, if there isn't yet a fix for you, you should be investing, probably asking a venture capitalist to invest in technology that will fix you one day. So there's like a strong preference, like even when you go out socially as an amputee, for you to wear your leg among other people you run into, right? I have a friend who's been like regularly quizzed in a grocery store because he wasn't wearing a prosthetic leg right um um you know if he appears without it um he was scrutinized in his small in his small town like why are you why don't you have your leg on you know and essentially implying that he wasn't trying hard enough if he didn't if he didn't give the technology time or somehow inconveniencing the other people by appearing without the prosthetic leg, which made them more comfortable. He wasn't asking for any sort of he's just picking out groceries like like there's it. And, you know, some amputees get told that they're indecent for

not wearing their legs in public. How dare you be disabled in front of us? How dare you be visibly disabled and not trying to look otherwise right not trying to pass and sometimes pass is a functional pass not a like visible pass but there is like a huge a huge emphasis on walking and in ways that are really toxic so i think about this in terms of sort of amputee communities at one point i was trying to join the amputee support group in the adjacent community to mine because my community didn't have one then. And I had left a message with the woman who ran the group and she called me up. And I was not even a year out of my amputation. And I have a really rare type

of amputation. That's probably too hard to explain at the moment um but like i had to wait for my bones to fuse before i could bear full weight right so i had to use crutches and my prosthetic leg for like like 11 months after my surgery i was using crutches still and then i dropped down to one crutch and then eventually um to a cane um because i was on chemotherapy like my body was not healing at all um um it was it was bad um but she was like quizzing me and i just like dropped down to using the cane and she gave me like she asked me all of these questions about my gait about how well i walked like her first question is are you using a prosthesis how well are you walking have you dropped like you're not using anything else just the and of

course i was still using my cane um and i I remember her saying at the end of the conversation that there were two old guys in the group who wouldn't even try wearing legs. And maybe it would be a kick in the pants to them to have me show up to this group. I did not show up. I'm not here to shame people into wearing their legs. And this was in the amputee support group that you were getting this was the amputee support group. And I'm encountering this like gatekeeper to the amputee support group who wants to make sure like that I'm going to be like a good question mark influence and the thing is i met these guys a couple years later because they were like friends from the same region i put it together they were part of the support group and the thing is you're like these were the guys i met the guys and they were great i met them their wives they they do a lot of road trips and camping together like they are disabled friends who had like who they're they were chuckleheads we had a great time living their best lives with no prostheses and they they're not using that yeah they're not using prostheses at all um but but that wasn't

like limiting their lives in any way they were going on more adventures than i was um when i met them at the amputee um coalition meeting that that i ran into them at and like connected the dots that these were the people that this woman was going to bring me into shame. And it just struck me as so absurd that we would do that level of like insisting how other people's bodies should be. And then like trying to set up other disabled people against each other in ways that are really toxic and ugly. Yeah. So when it comes to technology, because this, again, is the subject of your book, and thank you so much for talking about every dimension of disability. But how do we tell the difference between, you know, when we're looking at a new technology, a good technology and a bad technology? Because obviously, corrective lenses, for instance, are, I think, pretty, pretty unequivocally good, right, for sight impairment, very simple technology.

But there's others, you know, an exoskeleton that doesn't let you pee, maybe bad. So what is the distinction for you? I mean, a lot of it has to do with the desires of disabled people in community with each other. You know, I want multiple ways to be in the world. Like I think one of the problems with like how we set up technology and disability is that we're getting this story about disability wrong all the time because we have all these tropes and we like want to force things to fit particular molds. And this is like longstanding. I love this one quote from Harriet McBride Johnson in her book Accidents of Nature, which is about disabled kids at disabled summer camp. And two of the girls are

talking to each other. And one says like, she wishes there was just one story in the Bible where the crypt didn't get cured so that she could just be and be disabled and not have people try to intervene. Right. So I think we've wedded a lot of these stories where disabled people, like the call out for intervention or need to be overcoming or like there's a couple of these tropes that have like a long history here. And I think we wed that with like real optimistic ideas

about what technology can do for us. And this is where I think disability being so exceptionalized and abnormalized is really a problem because, you know, as we may have experienced in trying to set up this particular audio situation, um, you know, it took us 25 minutes. For those who were not, well, nobody heard this because it happened before the podcast. It took us a good half hour to get audio set up for this podcast, which we're recording

remotely, very common problem, but it was a little tricky today. It was, and I know it's complicated by the fact that I have like Bluetooth hearing aids on, like I'm not, I don't reject technology, right? But I think we tend to like idealize technology for disability, right? Because we've exceptionalized and abnormalized disability. Technology for disability always has to be wonderful.

We can never just have incremental changes, right? Where the material, like I really like material, like the material history of prosthetic devices is really interesting, right? But sometimes better materials are just better materials. It's not life-changing for me, right? It's just better. And a lot of times that we cover over sort of issues of like maintenance and where, and there are lots of people like Josh Earl, who's talking about cyborg maintenance as a regular theme, like disabled people are regularly having to think about how to repair these technologies, how to negotiate, like when things are out of warranty, how to deal with systems that don't want to give us stuff. Like, I feel like when we're describing technology for disability, we think it's going to be

a quick and easy fix because that's what people want. But if you've ever experienced technology as a human being, it's never as clean and as perfect as the manufacturer promised it would be. And I think we lose out on how normal technology is for disabled people too. And normal in the way that it plays out in the same patterns as it does in everyone else's life where you get a new operating system on your computer and it is the worst day of your life because everything's in the wrong place. And it's intensified. It's intensified. If you're someone who uses screen reading software and you get an update, all of a sudden, basic technologies that you used in your life are gone, right? And we forget that all of these things require constant monitoring, constant wear, that these are things we wear close to our bodies or close at hand when we talk about different apps and things like that. And I think when we're always praising technology for disability, we tend not to see the technologies for what they are. And what are they? Is that too general of a question? We tend to not see them for what

they are. That made me want to go, what the hell are they though? So I'm from philosophy of technology. So you asked me, what are they when it comes to technology? And we could be here for several centuries. But I think there's a fundamental like technology is no one thing, right? Technologies ideally are tools that help us get things done. Sometimes they can change our lives, sure. But most of the time, they're just changing how we do things, not what we do, right? And I feel like a lot of our stories about disability technology like suggest that if we just got the technology right, that disability wouldn't be a problem.

Or it ceased to exist. Or it ceased to exist. And there are so many movements, you know, when I think about all of the science fiction that writes disabled people out of the future, right? That's not a realistic vision. Like, the future is going to be more disabled, not less. Climate change is coming. More people are going to have, you know know we talk about pollution and rates of asthma and different types of cancers um you know even if we got off planet like space is disabling it

is not our environmental niche it will hurt our bodies it'll probably hurt our minds too um right like there's all of these these like elements towards no matter what future we envision, we're going to experience more disability, not less. So the way in which we continually write out disability in all media, but also in how we regard the future, really keeps us from confronting basic things we need to about how technologies work, right? And that they're not always constant, that we need maintenance, that it takes a certain level of care and investment in infrastructure. I think about how all of these one-off devices where, oh, this is going to change everything for you, only operates with certain like environmental considerations right and as soon as those break

um um then then things aren't gonna go as well i think about this a lot with like um self-driving cars right which of course we want because we haven't invested in high-speed rail um right why do we need self-driving cars it we we failed at the other transport for lots of different social reasons. But it's really hard to program these things because our roads are so irregular, right? Our infrastructure itself makes all of these things that we think about as sort of quicker technological projects are so much more complicated by the fact that we're not making crucial investments in basic infrastructure. Yeah. Well, and God, sorry, we can't start talking about self-driving cars because then I will never shut up. I'm so excited for you. It's my, it's my absolute favorite topic. But what, what this reminds me of is a theme that we've come back on this show to again and again, which is that our sort of material technology

in certain places has become very advanced. You know, the iPhone is one of the most advanced pieces of technology in countless ways. And yet our social technology, the technology of our society, how our democracy works, how we include people's voices in conversations, how we make decisions as groups, right? There's a way to define technology in my sort of naive view that includes those processes as well. And that has not advanced.

Our, the means by which we make decisions about how to build our society, about what material technologies to pursue like that would mean, you know, an advance there would mean rooting out ableism and having a more inclusive way to talk to people. I don't know. Is that does that metaphor make sense to you at all? Yeah. You know, I think there's something to be said about paying attention to disability politics right i think about the ways in which disabled groups because we're all very different um have worked towards things like across difference right to get important pieces of legislation passed and of course if you had judy human here you you might you might you might have run into some of these concepts before. But the different types of coalition building that exists in disability circles is really interesting because often it involves confronting our own ableism about each other, right? that we have all these biases, but learning to appreciate the contributions of other people and see sort of like where we can work together,

I think that's actually really important. I think having a disability politics is much more important to me than like having individual disabled people, right? We need to have an ethos of making space for each other in terms of like setting up accessible experiences in every part of of things and it's not that all disabled people like agree all the time uh but if i did there is a sense in which i'm going to provide the mechanism like to hear other people out and and that yeah that's like and sometimes that takes

time like and i i think about this there's lots of theorizing about crip time right about how sometimes it takes disabled people longer or shorter times in some cases um to do particular tasks sometimes we don't show up on time um because we're we're dealing with um you know pain flares or something like that and how we can't work always at the same pace. And it's just much like this community theorizing that happens. And I think cross community action is so important on a lot of these things. But actually learning to listen to other people is a big part of that. Yeah. And I'm really grateful to you for the reminder that that's a community that I can participate in more fully myself, given my own, as you say, multiple disabilities.

You said you were to return to that. I'm curious what you meant by that. Let me tell you. Okay. So this is a thing I think about quite often because I'm at a research university. But most recruiting for research projects is about people having one disability and not others, right? If you have criteria for people that you would like to have as human subjects for different types of technology or scientific research, usually you want people who are in the absence of other disabilities, which means because most of us are multiply disabled, you and I both, most disabled people are multiply disabled people. So most scientific research about disability actually doesn't represent most

disabled people. There's this interesting like sort of inversion that sort of happens there, right? Where most people don't have just one, but when we're testing devices, we want people to have just one. I've started to think about how to address this problem in scientific research, especially about technology, but in all areas, because we, this, this is actually very bad because when, you know, when people announce their exoskeleton, they're like, well, this is for paraplegic people of this particular type of spinal cord injury. And you're like, well, that is a much smaller population than it was initially advertised as. I, you know, I know we're so down on exoskeletons but every time you say the word i picture an

exoskeleton and i'm like that's pretty fucking sick like they do look cool i mean there is that and and i do think that that must be part of the desire to build them is like you see the edge of tomorrow or some some movie where some someone's an exoskeleton you're like yeah that's fucking sick i want to i mean for me ever since that one student pointed out the issue with the bathroom i look at exoskeletons and i go you won't be able to pull your pants down and sit on the toilet like it's much more i guess because i mean one of the things i also have is crohn's disease so going to the bathroom is an important part of my life and it needs to be quick of Of course, of course it is.

And that's, and that's the problem with, you know, science fiction leaving disability or even frankly, bathrooms. Science, most science fiction doesn't have any bathrooms at all. Yeah.

And no one's even thinking about, I mean, no one thinks about the fact that on Star Trek, they're all wearing jumpsuits. They're, they're all having to unzip and pull, take all their clothes off to go to the bathroom. It's not,

nobody thinks about technology. It's not convenient technology. It's not convenient technology for this, for sure. No, it's, there's like, even, I don't know if you remember the show 24 that used to run. I like, I used to wait for someone to use the bathroom. Like if they're going to show me a 24 hour period and no one uses the bathroom, like I feel like something's gone wrong for all of those people. I'm curious what a science fiction, you know, future that, that does, you know, make space for disabled people. Like what does that look like? Or do you have any,

any, you know, favorite thinkers who, who are envisioning that? Um, yeah. Yeah. So, um, my colleague Damian Williams, um, um, really got me excited about the show, So my colleague Damian Williams really got me excited about the show The Expanse, which really has like ideas about like how space will like affect human bodies in the long term. So you actually see like once like Martians come back to Earth, like they can't like they can't stand up or get oriented. And it's like, is there a born or lower gravity? Yeah. Yeah. Yeah. stand up or get oriented and it's like a not like they're born under lower gravity and they're yeah yeah yeah so so i think there's some really like exciting science fiction like when they do like admit that space will disable our bodies um um i i think the expanse is really cool um you know there's some other like things about like genetic engineering um lewis lois uh Bujold has this one book where basically people who

are supposed to go work off-site, the site being Earth, so people who need to go work in space, actually breeding them to have four arms instead of two arms, two legs, because it's much more convenient for pushing and moving around and doing the sort of tinkering tasks that they need to do. But then they're breeding them to be disabled, but extra functional in a particular context. It's an interesting idea too. Yeah, I know that book and I've never read it, but it's such an interesting concept that yes, if you were born and were working in free fall, you, and you went up there with a body that, you know, had

evolved for earth's gravitation, you would be disabled vis-a-vis free fall. And that, you know, you would actually want a different body in that case. Well, coming back to, and bringing us in for a landing here, coming back to technology itself for the person who is, you know, working in the technological field. Right. I sort of imagine the the the the very capable high school student who's doing like the project. You know, they're doing their oh, I'm going to invent something project. They're like, oh, I want to help a disabled person by inventing some sort of thing to help people see or some sort of prosthetic limb. I feel like I saw this so much when I was a kid. Um, there's the sort of Eagle Scout type project to, to help disabled people. What is, uh, we talked about the mistakes that are being

made by that person in that case. How would you suggest that they correct that error? What is the, what is the step to take to, uh, move us in a direction of thinking about technology in a way that is better? So Alice Wong talks about disabled people as oracles of the future. And I think it's really important to listen to disabled people on future topics, but also on all sorts of technological topics. So I think like a first step, if you want to help disabled people, is essentially listening to disabled people. And sometimes that can mean picking up some poetry and memoir, right?

That doesn't necessarily look like you think it'll look. And I don't think you should like go out and find your first disabled person on like in the grocery store and start asking them questions. Don't do that. I heard on this podcast that I should ask you questions. What do you need? How do I help you? Yeah. I think there are much more organic,

less intrusive ways. I mean, a lot of disabled people are just expected to narrate their body for other people. And that's also kind of a terrible thing to have to do on a regular basis. You know, when people ask what happened, what's wrong with you? Those are questions that disabled people who are visibly disabled get asked on a regular basis. And it's, you know, when I experience that, you know, and I say, well, I'm an amputee from cancer, like their follow-up question is usually something like, but you're okay now, right? And I've had two recurrences of my cancer and two lung surgeries related to those recurrences. So I don't feel super confident about saying like, oh yeah, everything's peachy

keen now. Like I am someone whose body is surveilled medically and I want it to be, right? You know, I think there are, you know, ways of asking these things without being intrusive or without like requiring someone to cheer you up about their disability, which is often the ask. But no, I think disabled people's writing, I think the things that we make, I'm really a fan of the sort of artistic work of Sins Invalid and so many of the poets and writers that come out of that group that are very um like um proponents of disability justice um i think those are really important artistic movements for disabled people that a to pay attention to uh but also to learn from and having uh community identity um and you know i'd love to see more disabled characters written by disabled people, played by disabled people, all over.

So I've been lucky. I've been having students come to my office all week, discuss. I have a long list of books written by disabled people, and you can read any one of them or see a list of documentaries or read these books of poetry. It's just a long list, and they can come pick out one and come talk to me about it and one of the books that they've been reading is this it's called uh one for all by uh um lily lanoff um and it's uh the the author has pots the main character has pots um and it's it's a great book it's not like totally centered on disability there's a lovely story um about her finding her dad's murderer i don't know why i would call it a lovely story but it's it's a good story about her finding her dad's murderer. I don't know why I

would call it a lovely story, but it's a good story. It's such a sweet tale of finding a murderer. Of avenging your father. Oh, it's heartwarming. No, this book sounds great. But it's a good book, right? It's a young adult novel, but it's like really good disability representation in a way that, you know, I can think of a couple of other novels that this is true for, but it's just really good to see. Yeah. Well, I can't thank you enough for coming on to talk to us about this. It's been a really minded, consciousness-expanding conversation for me. And guess what? If people want to read work by a disabled person, they can check out your book against techno ableism. How's that for a plug?

Oh, I love it. Thank you. And you can pick it up at our special bookshop, factuallypod.com slash books. Uh, but where else can people find the book and find your work? I have a website called tech and disability.com.com, which will have some open access educational materials that'll come out in January that we're pretty excited about. That's basically a whole bunch of readings from disabled people. And that's pretty fun. But also, I mean, if you pick up the book or a reading guide about it, I want you to read other people's books, right? about it, I want you to read other people's books, right? So there are lots of things I referenced, but then you can also, you know, follow up with lots of different memoir poetry. You know, I've mentioned Bill Peace's blog. It's fantastic. There's no dearth of this. There's a lot for people to check out and that makes me really happy. That's so wonderful. Ashley, thank you so much for coming on the show. No, thank you for having me. I really appreciate it.

Well, thank you once again to Ashley Shu for that incredible interview. If you want to pick up a copy of her book, you can get it at factuallypod.com slash books, where your purchase supports not just this show, but your local bookstore as well. If you want to support this show directly, head to patreon.com slash Adam Conover. Five bucks a month gets you every episode of the show ad free. We even have a community discord, a lot of other great perks. Fifteen dollars a month. I will read your name at the end of this podcast and it'll go in the credits of every one of my video monologues.

This week, I want to thank Busy B, Lois Bell, DPEJ, Amet A and Monica Thompson. Thank you so much for your support. You make this show possible. I also want to thank my producers, Sam Rodman and Tony Wilson, everybody here at HeadGum who makes this show happen. You can find me online at Adam Conover wherever you get your social media. Head to adamconover.net for my tickets and tour dates. Please come see me on the road in New York, Boston, Atlanta.

Oh, my God, I'm headed to San Francisco soon. Please come out and see me. Would love to see you there. And until then, we'll see you next time on Factually. I don't know anything. That was a HeadGum Podcast.