Against Technoableism

Joeita Gupta :
I am Joeita Gupta and this is The Pulse. Technology, no doubt technology can make life easier and more convenient for just about everyone, but for people with disabilities, technology has long been held up as an answer with unbridled zeal. An answer to what you ask, an answer to fitting in. Technology can make the impossible possible, reading books, riding a bike, climbing mountains, everything that had previously seemed out of reach because of a disability is made possible with better technology. Technology can change lives and open up opportunities. Technology can mean liberation. Technology can mean progress. Technology has long been held up as a fix for disability, but is technology the solution for disability we want or need? Today we discussed techno ableism. It's time to put your finger on The Pulse.
Hello and welcome to The Pulse on AMI-audio. I'm really excited to be talking about disability and technology because I know in our community, a lot of us love our tech. I'm not going to deny that I wouldn't be able to host this show if it wasn't for some technology, but it's always refreshing to get a different take on the relationship between disability and technology. Ashley Shew is associate professor in the College of Liberal Arts and Human Sciences at Virginia Tech. She is the author of Against Technoableism: Rethinking Who Needs Improvement. Ashley, hello and welcome to the program. Thank you so much for speaking to me today.

Ashley Shew:
Oh, thank you so much for having me, Joeita.

Joeita Gupta :
What is technoableism?

Ashley Shew:
I should start off by saying I'm not anti-technology. I like good technologies that work, it'd be very hypocritical for me to have an anti-technology book as someone who's walking around in a prosthetic leg, who occasionally puts hearing aids inside her ears and who takes advantage of different types of medication that help me with different things. So I'm not anti-technology. What I'm against in this book, against technoableism is sort of a particular story that we've been told about technology and about disability that seems technology is solving the problem of disability, and that sort of enforces a particular narrative on disabled people where our bodies and our minds call out for technology and for someone to help us at all times because of the narratives we have that are so ableist to begin with.
So often when sort of narratives about the power of technology and sort of the problem of disability, and I would put problem in scare quotes there. These things fuse together to tell a story where we can't think about other solutions and we can't even see outside of... we have to see disability as inherently problematic through a lot of these lenses too to think that technology is always an approach we should take.
So a lot of this gets seen in how technologies are advertised. A lot of it gets seen in news coverage of any disability technology. Every disability technology is going to change our lives, and that's not hyperbole. That is how they are describing these technologies so often when we see any news coverage of disability-related technology. And a lot of those technologies, of course won't come to fruition, they won't make it to the market, and if they do make it to the market, a lot of them fail too. So I want us to get out of that mindset and do a better job that actually appreciating disabled people as makers, and as shapers and as agents of our own liberation in opposition to a lot of these narratives.

Joeita Gupta :
When I was much younger, my first summer job had been organizing a preparatory program for students who were blind or low vision and they were about to start college, university, and this was a week-long preparatory program. And I remember one of the students was really talented and she had a beautiful voice, but she also unusually, I'm going to put that in scare quotes and say, unusually didn't use a computer. She wanted everything in braille and was, I remember quite heavily chastised for wanting things in braille and not embracing a screen reader and other technological solutions for her disability. How much of techno ableism comes down to punishing people with disabilities for not using the right tech or the latest tech for making choices about, say, but I don't like X, Y and Z. It may be the newest thing on the market, I prefer to use something else that's been around a lot longer, but getting pushback on that.

Ashley Shew:
I mean, so often we're marketed different technologies as disabled people and told that we should be using the latest and greatest thing, that there's some new solution that we should be using and it makes the technologies that we already have and like seem less good. So I mean when it comes to technology for blind people, I think about some of these newer tools, but lots of people like, enjoy, use braille. A lot of these technologies aren't replacements necessarily for that. I also think about just the way the common attitudes around wheelchairs and wheelchair use. So many people who would benefit from using wheelchairs are actually discouraged from doing it because it's seen as inferior to other ways of being and existing in the world. And I see every new foot gadget for amputees. I'm an amputee, I like amputee. Every new foot gadget is supposed to change the world for us.
And sometimes things are just incrementally better. They don't have to change everything, new materials, whatnot. And sometimes things are actually a step back. Jaipreet Virdi talks a lot about how much less she's able to hear now that all hearing aids are digital, and of course, she learned to hear through analog hearing aids and you can't even find those on the market anymore. Sort of the will to upgrade for her has been not a good upgrade. There's also lots of issues with, of course with digitalized technologies surveilling us to a higher degree than on disabled people.
So I'm feeding all this data in and it's data that's very close and intimate to me. And non-disabled people are often not scrutinized in the same source of ways that disabled people are in these technological environments, and just this sort of maintenance. So even if I really, really like a technology, a lot of times I want something lower tech because I know I can fix it or I know someone who will be able to figure out how to help me get it fixed on a shorter time period than things that have been sent to the cloud, right? You got to hope your internet connection doesn't go out or any of these new technologies. So oftentimes we're told things are much, much better when the technologies we already have might be reliable in ways that non-disabled people fail to appreciate and also reveal less about us and make us less vulnerable in terms of maintenance, needing maintenance, but also in terms of surveillance.

Joeita Gupta :
Yes, it's a really good point about surveillance, but I'm also curious about who is creating all this tech for people with disabilities? Is it people with disabilities who get input into the process or is it non-disabled people trying to figure out what's best for a disabled end user?

Ashley Shew:
I mean, I want to say sometimes disabled people are making and shaping technology, but those aren't the vast majority of disabled tech stories that make it into the marketplace. So well, we might trade tricks and tips with one another in disability community and get better technological configurations for it. Right? When I go to my amputee group that we have a whole discussion about where to locate grab bars in a shower or what sorts of shower chairs work, we are in fact having a conversation about technology and helping one another, that is never talked about in wider outside disability type media. What we get is instead there are these stories about humanitarian engineers who are helping disabled people or what is not news, but actually just PR.
For so many technologies, when they get the label disability or when they're disability-related, at that point, the reporting is a lot less critical because of course the people who are working on those technologies mean to help people. So sort of probing questions like how will this work with insurance? Will anybody be able to went forward with this? Will Medicare, Medicaid cover this sort of thing if you're in the United States in ways that people will actually be able to get this and do people like it? I'm always disheartened at the number of news stories about technology that interview the makers, the engineers, the designers and don't actually interview any of the users. Sometimes they interview family members of users, I see that more often. And that is actually really problematic too, that someone always has to be speaking for us and it can never be us.

Joeita Gupta :
Do you think there's a difference between technology that's designed specifically for people with disabilities versus the technology that people with disabilities might adopt that was designed for everybody? I'm thinking about the difference between a phone that's designed specifically for the blind, they do exist, they are out there versus something that's, like the iPhone, which has something like voiceover built into it as a feature of the phone, so there's nothing really special about the iPhone. It wasn't built for people with disabilities. It's just has an extra feature that allows someone who's visually impaired to make use of it. Does that framing change the conversation about disability and technology?

Ashley Shew:
I mean, I think so often people are looking to valorize non-disabled helpers of disabled people and that really gets in the way of good tech assessment, like have the relevant users been interviewed? I also think about where disabled people are brought in the process as well, and that's one thing I'm currently working on with Disability Community Tech Center that we're starting at Virginia Tech. It is about actually having disabled people consult on projects long before they're funded, before that grant proposal is written that has an idea for how we're going to help disabled people or even something in the absence of disability, like input from disabled community members can tell you a lot about infrastructure in a way that few other populations know about just given the sort of infrastructure that we have to pay attention to that other people don't.
So actually having disabled people as consultants and collaborators leading these projects and directing them ends up being important not just to getting the technology in a way that a community might like it, but also there's this important part here where so many people are brought in as human subjects, so you already know the project, right?
If you're an engineer who's working on these things or a designer, you already know what it is you want and now you're bringing in disabled people, usually have a very specific type of disability to test in a limited ways particular functions, and you already know what you're trying to make at the point where you're bringing in human subjects. So the ability of disabled people to actually shape and change what that technology is or what it can do is often very limited.
Also, they're usually recruiting for people with one type of disability when we're talking about human subjects with research. And most of us have more than one, and that means the sort of cross-disability conversation you can have about technology is really limited and it also means that the technologies we get are imagined against a version of a disabled person that doesn't actually exist very often. That is to have someone who's singly disabled.

Joeita Gupta :
In the book you talk about how after your amputation, when you look for someone to fit you with a prosthetic, they're very real about the process. They have all these pictures and videos of people going up and down stairs and things like that, but they're also very honest about the fact that it doesn't go that way for everybody and you have good days and you have bad days. How prevalent is that sort of thinking? Are we spending enough time talking about the messy day-to-day reality of using tech? I mean for all that I might extol the virtue of an iPhone or assistive technology and software that allows me to use a laptop. The reality is these things don't work a lot of the time and then you're back to square one. But how much of a conversation are we having in this broad discourse about disability and technology about the fact that often the tech doesn't work the way it was supposed to?

Ashley Shew:
Yeah, I mean, I'm really lucky in that the prosthetist that I chose, and I interviewed a number before deciding, and I was lucky in the sense that I had three months before my amputation where I knew I'd be getting an amputation, so I had time to interview a whole bunch of people and find out who I wanted to work with. My prosthetist, who's been in the business for a very long time, we had a whole conversation about how it's not going to be the same as it was ever again, that I was going to be an amputee and that this would impact my life in ways that had never been shown to me in sort of movies, TV, entertainment, news, anything depicting an amputee. So many of these things sort of gloss over the day-to-day.
So you hear a story from someone's best day and they're running a marathon but doesn't tell you about the blisters that they had after that on their residual limb or keeps you... it gives you the parts that are really interesting to non-disabled people, but doesn't tell you about the everydayness of disability where it is normal to you that you have to go through a checklist in the morning as you put on your liner and then put on your leg and then put the sock on your leg and it's just like a nesting doll process until you get to your shoe that there were all of these steps that until you're doing it, you don't know what it is.
And then getting used to it. It seems so painful in the beginning that you have to go through all these steps and it's such a hassle, but then you get good at it and it doesn't seem like anything. It's no longer a problem, just sort of the zig zaginess. Sometimes things are great and I go for a walk and everything's wonderful and my dog's happy, and then other days, I put on the leg and it's not going to feel the same, right? I ate too many salty onion rings the day before, and all of a sudden my residual limb is a little bit bigger and nothing feels right and I have to ice and put up my leg, or I have to take some ibuprofen and hope I don't upset my guts and try to put back my cyborg body into a more functional shape.
We don't see the ins and outs of it. We don't see them as normal, they're exceptionalized when we do or it's made to seems tragic. Oh, there's so many steps you have to take to get your leg on and actually take steps and it's not, you get used to so many things.

Joeita Gupta :
Some years ago, I want to say about two or three years ago, there was a woman I'd interviewed on the show, Christa Couture, and Christa had done a number of really amazing things, was when she was pregnant and she realized there weren't a lot of pictures of mothers who were also amputees. She took pictures and she talked about her journey as an amputee in that way. She's very creative about dressing up the prosthetic leg and making it cool and creative. Do you think that there are ways in which people with disabilities can take back the narrative about technology and discard the able-savior narrative that has been fed to us for so long?

Ashley Shew:
I'm heartened by the number of disability narratives and disability memoirs that I see hitting the market right now. I talk about some of these. I am excited by, say, what Alice Wong's doing with the Disability Visibility Project in having disabled people interview each other. I mean, kind of like we're doing now. I also approve very much of the pulse here where disabled people are in conversation with each other, and I think that's very different than always being expected to be in conversation and curate yourself for a non-disabled audience, even though I hope non-disabled people will read and listen and learn. They shouldn't be the central figures in all the storytelling we do.

Joeita Gupta :
Do you think there's a lesson here in your book against ableism that, I mean, of course I would like for us to think differently about technology as people with disabilities, but do you think there are lessons here for the creators of technology? I mean, you've touched on a lot of things already about involving people with disabilities earlier in the project and so on and so forth, but do you think your book paves the way for a fundamental rethink on how technology can be involved in the lives of people with disabilities that doesn't necessarily involve fixing a person's disability?

Ashley Shew:
I mean, part of that is having more disabled creators and making the things we want to see in the world and shaping the technologies we have in ways that better suit us and our creativity. So many times, disability technologies imagine our circumstances, the engineers, designers, artists imagining what it is to be disabled that they often get the story wrong. And I talk about that a lot in my book. That's a good chunk of it where the story gets warped because of different expectations, different sort of narrative tropes that are negative about disability and sort of this overarching savior narrative. But I even think about things like walkers, right? The dull gray hospital walker is the one that comes into your mind and it is like walkers are fantastic technologies and a lot of times people really hold off using something like a walker because it has this dull gray image that we could actually make things beautiful and fun to use is something I think disabled people appreciate.
Certainly, when my friend got surgery last year and started using one of those dull gray walkers, the first thing I did was gather all my colourful tape, get a whole bunch of stickers about being disabled and proud because she is, and affix them to this walker so that everywhere she was taking it, it represented her and it was more joyful. And those are, I mean, that's the price of stickers that I could improve that, and walkers are cheap if we're talking about just the basic frame, but they're good technologies and too few people use them because they have this particular image.
So I also think about how our technological choices can be shaped by how things look. And some of this, I think about a lot as an amputee and everyone's trying to make a prettier leg, and I don't really care if it's pretty or not as long as it works. But then also I think about all the stories from arm amputees who choose five-fingered arms because then the people around them aren't sad for them. Like these narratives about like, "Hey, I got this thing that looked more like they expected, so when they encounter me, they don't encounter me with sadness, even though I haven't changed at all. I've made a particular technological choice to change how people interact with me." I think those are really powerful narratives in our community that should make us think more about how we design things to be a pleasure to use and not just be a consolation in some cases.

Joeita Gupta :
Yeah. That's really beautiful. The one thing I should ask you about is if everyone is thrusting this narrative about how great technology is for people with disabilities, and it's the be all and end all, I'm sure you've heard people lament the exorbitant cost of a lot of this tech and the fact that a lot of government programs don't cover the tech. I talked to you previously about the iPhone, I mean, people in Canada have been saying for years that the iPhone should be covered by the government, that they should pay for that as an accessibility aid for people who are vision impaired, still hasn't happened. Why is it that we're so slow to pay for tech, but very quick to promote it as a fix for disability?

Ashley Shew:
Well, I mean from a non-disabled perspective, then you don't have to worry about it. If you think the solution's already here, then you don't need to worry about disabled people anymore. And that's one of the scarier parts about no ableist narratives to think things are tiddly solved and to not actually understand nuance. I mean, this is one of the reasons I think consulting by disabled people early on in a lot of tech projects is important because then you can actually talk about what it takes in terms of adoption by insurance and by national healthcare in order for us to actually get a tech item working, maintained. No, some of the costs are wild, and at least in the US, I mean, I pay out of pocket for my hearing aids and it is ridiculous. I mean, insurance does take care of my whole leg. I'm lucky for that, and it's more expensive than my hearing aids.
But I think also people don't understand the long waits for maintenance, especially if you have inferior tech. The long waits for maintenance when we see things as already solved or even to paint them as problems in the first place, it changes how we approach and engage. And so often we've had non-disabled people who have gotten to be the experts about disability, and they've not let us sort of to the correct, better way of thinking about how technology and disability fit together. We need disabled experts all along the way here.

Joeita Gupta :
We just have a little bit of time left. Less than a minute. You do have a small excerpt from the book you'd like to read. Would you like to set that up for us and read out a little bit from your book so we can get a sense of it?

Ashley Shew:
Sure. This is from my chapter called New Legs and Old Tricks, and I've sort of just had five vignettes about leading up to my amputation where people have said how great new tech will be and how I'll be better than I ever was before, and how people were kind to me and the moment I got a rollator, which is a walker with wheels was a big moment when I could throw it into my own car, and getting in my car was probably a bigger moment in terms of technology for me. And my mobility then getting a new leg was just because I knew I could go places. I mean, I was going through really a terrible regimen of chemo, so having enough energy to stick a walker in my car was a significant moment. Anyway, so now I've been through these things and I say, lift off, here we go.
I have been interested in technology and disability for a long time, even before I knew I too would become an amputee. The stories we see about amputation and paralysis are probably familiar to you, ingrained through Paralympic coverage in Toyota ads, through dance competition shows, through news articles about the latest and greatest in disability tech. Through stories that feature war-injured veterans coming back to their homes and communities outfitted with the best tech. We are inundated with imagery of disabled people overcoming the circumstances of their bodies through technology, which is framed as a kind of technological salvation for bodies and minds.
When I became an amputee, people kept reassuring me, actually reassuring themselves that with advanced and wonderful prosthetic technologies, I would be back even better than ever. Superhuman enhanced a $10 million bionic woman. Other types of disabled people aren't always subject to this narrative. They're supposed to wait and hope for the day when technological advances enough to help their "broken" bodies or minds which are depicted as less worthy of love, care, pride, and positivity. In contrast, the amputee problem, here again in scare quotes, the problem of being an amputee, particularly a leg amputee, is often depicted as being "solved". People point to the Paralympian turned murderer, Oscar Pistorius, the Blade Runner and Amy Purdy on Dancing With the Stars, the parameters for being a successful amputee, which generalized to parameters for being a successful disabled person. Are clear, recover, overcome, inspire, become normal again, but with the added razzle-dazzle of technological enhancement.

Joeita Gupta :
That's amazing. Ashley, thank you so much for speaking to us today. It was such a fascinating read and you really got me rethinking my relationship with technology, so thank you very much for chatting today on the program.

Ashley Shew:
Oh, thank you so much for having me on the program. It's been really great to talk about it with this particular podcast. I'm with you.

Joeita Gupta :
Ashley Shew is associate professor in the College of Liberal Arts and Human Sciences at Virginia Tech. She is the author of Against Technoableism: Rethinking Who Needs Improvement. While folks, just before we go, I wanted to give you a couple of ways to get in touch with us. You can write us an email, write the feedback@ami.ca. You can give us a call at 1-866-509-4545. That's 1-866-509-4545. And don't forget to leave permission to play the voicemail on the program. You're also welcome to find us on X, formerly Twitter @amiaudio, use the #pulseami. The videographer today has been Jay Kemp. In for our normal technical producer, Marc Aflalo is Jordan Steeves. Ryan Delehanty is coordinator of our podcast at AMI-audio. Andy Frank is the manager for AMI-audio, and I've been your host Joeita Gupta. Thanks for listening.