Stephen Cass: Welcome to Fixing the Future, an IEEE Spectrum Podcast. I’m Senior Editor Stephen Cass, and this episode is brought to you by IEEE Xplore, your gateway to trust engineering and technology research with more than five million fully searchable documents, which on a personal note, I’ll admit that may not sound super exciting, but actually, if you’re like me and you’re the kind of person who regularly falls down Wikipedia rabbit holes, Xplore’s actually another thing you can have a great time poking around, and anyone can search and read abstracts for free.
In the October issue of Spectrum, we had a fantastic feature article by Britt H. Young titled “The Bionic-Hand Arms Race” and subtitled “High-Tech Hands are Complicated, Costly, and Often Impractical.” In it, Britt poses the question: “It’s time to ask whom prostheses are really for and what we hope they will actually accomplish.” I’m delighted to be able to speak with Britt today and hear more about her investigations on prosthetic hands and what does and doesn’t make them useful to the wearers and about how that issue reflects problems with assistive tech and disabled users in general. Hi, Britt. Welcome to Fixing the Future.
Britt Young: Hi. Thanks so much for having me.
Cass: Thank you so much for coming on. Can you explain why you’re motivated to ask that question about whom prostheses are really for?
Young: Well, it’s a lifelong experience that brought me to having that question, repeatedly, repeatedly for myself. I was first fitted with a myoelectric hand. So that’s a type of prosthesis that allows the user to flex muscles inside of a socket to control—basically just open and close on a robotic hand—when I was perhaps about six months old. So I was actually one of the earliest cohorts and the youngest cohorts to receive this type of hand in the early ‘90s. And I had been wearing what was then coming out as the most advanced myoelectric hands on and off almost ever since then until I stopped in—around 2018. And that was when I received what was hyped as the most advanced prosthetic hand ever produced. And my experience with it was extraordinarily different than what I might have expected.
And the way that these hands are getting pushed and advertised is that they are coming closer and closer to mimicking a lifelike human hand and fully replacing what you do not have. And in my use of these things throughout my life, I have found that they were not great replacements for what I never had, but they were a tool that was sort of forcing me into a type of behavior that was unnatural, but it appeared to mimic what two-handed people were doing every day. And it wasn’t abundantly obvious to me that this was always better than doing things my way. And sometimes it took more time, sometimes a lot more cumbersome, less reliable. So I found that I was thinking through what exactly are these objects supposed to be doing for people missing limbs? Are they supposed to be making life easier? Or do they ultimately just make you look more like everybody else? And I’ve explored this quite a bit in my writing. And when I started to look at the history of prosthetic hands, I’ve seen the motivations for what these objects are supposed to accomplish to kinda shift over time, and especially with more advanced, high-tech, bionic hands, which are primarily funded by research out of the military. I started to question what these objects are supposed to really accomplish and what roles disabled people actually play in the research and development of these products.
Cass: So I think a lot of non-disabled people tend to have this instinctual reaction, “Well, of course, why wouldn’t you want the prosthesis that looks and operate as much like a human hand as possible?” It’s this idea of restoration. And so can you talk about why someone with limb differences might feel differently, and why maybe restoration is a really bad frame to think about how a prosthetic works in somebody’s life?
Young: Well, s—foreground with this first:vthe experience of people who have had an amputation and the experience of people who have a congenital deficiency or are missing a limb at birth like I am, those two experiences are extraordinarily different. And what people expect from technology is also very different in that respect. However, my—I mean, what I sort of try to push in my writing and to think with, is this idea that restoration or this attempt to make someone whole again is an unhelpful and possibly damaging way to go about the development of any kind of product meant for disabled people, regardless of how they have acquired their disability. Because the fact of the matter is you have this—you have this body, and you are making peace with this body.
When you have a congenital deficiency and you are—you’re born into this, you spend all of this time as a child figuring out how to navigate the world with the body that you have, and that’s a healthy thing to do. I’m not like 100 percent against prosthetics; I still use a prosthetic for exercise all of the time. But making peace with how your body works can actually open up to you a lot more intuitive and easier practices, and cheaper practices, than acquiring in a very expensive high-tech hand. I have a lot of different little hacks at home for doing things that I find difficult for one hand, which cost a tiny, tiny minuscule fraction of what a prosthetic might cost. But I find that thinking in terms of replacing an entire body part rather than thinking through what are the specific needs of this individual kind of creates a product that has different motivations baked inside of it.
When you’re thinking through a specific problem, say, tying shoelaces, and you realize that shoes in and of themselves have been designed, from the beginning, for two-handed people and that we have a specific individual who says, “This is really difficult for me,”—it’s not in the name of accessibility, and it’s not in the name of doing justice to this person to prescribe for them an $80,000 prosthetic hand so that they can mimic the two-handed movements that were in mind with the design of this object. In the name of accessibility and justice for this person, we make sure that there are velcro shoes available, we make sure that there are elastic laces available. Like, I use elastic laces on my shoes. I don’t ever have to deal with, like, fumbling through using a myoelectric hand to hold a lace, which still I don’t care how much money these things are—Like, they still, like, are not very good at this.
So I think that when you approach design, especially design for disabled people, there is an assumption baked inside that you definitely want the thing that everybody else has and that you want to fill out that hole. We recognize it as a hole, and we’re gonna give you the thing that fills up that hole. And I question whether or not that that is a productive approach when most of the time there are specific tasks that can be accomplished far more simply for far less money for most people.
Cass: With these high-tech hands, it seems like we’re really prioritizing form over function in a way. But of course, the engineers who are developing these, you know, they would feel that they are doing their best to create things that really are very functional as well as something that just looks like a hand. And your article talked about the ways in which there are great promises made about functionality, but there are specific ways in which they just don’t really deliver on that promise. So could you talk a little bit about that?
Young: With high-tech prosthetic hands, you’ll see in some of the promotional materials that they will show people doing things that are actually traditionally not two handed. And I point this out because the vast, vast majority of people who are fitted with prosthetics, are missing one limb. It is a far more rare case that people are missing both of their arms and their needs are extraordinarily different than people who have an extant fleshy hand. But that is—that is, first and foremost, the person that they are fitting. And in their materials, you’ll find that—like, you would imagine it would be framed in such a way that it’s like, “Okay. You can now do the two-handed things in life,” but they’ll still show over and over, like, people picking up a glass of water with the prosthetic hand. And they might have extremely limited range of motion.
Like for me, my elbow—I have an elbow, but I have very little past that elbow, so I can’t, with a prosthesis on, bend and bring a cup to my mouth. And yet I have been asked to pick up cups by prosthetists to sort of test the functionality, and it’s all very abstract and has no relationship to how you might use a prosthesis in the day-to-day. And while the manufacturers of these high-tech prosthetics promise that you will be able to do all sorts of two-handed things, the reality of it is there is an extraordinarily long adjustment period where you are learning how to use this thing, and you’re learning how to do it in the way that the prosthesis demands. And you might already have another way of doing things. Like, I put twist-top soda bottles between my thighs and twist off the top with my right hand and I get it done instantaneously. Does it look a little silly? Maybe. But lining up a prosthetic hand to hold the bottle and then twist is actually gonna take a little bit more time, and it’s a little bit more cumbersome.
People who have been doing it for years and years and years would still—if they weren’t wearing the prosthetic, they were just—they’re just gonna put it between their legs and twist off the cap. It’s about what is immediately intuitive to your body. And that, like, instantaneous work and that ability to have haptic feedback, to feel the body—the bottle squeezing between your body, like, all of these things, they’re lost with a prosthesis, which is not to say—in response to your question—which is not to say that, these prostheses can’t do anything. It’s just that what is the cost, you know, of learning how to do it in this way, and the actual financial cost. I mean, then insurance is an extraordinary hassle in the United States, and I just think that we have so much of an emphasis on these products that I think are, like, luxury products and not enough emphasis on helping people do things on the day-to-day that’s super practical, that’s super concerned with their lives and getting things done, being accessible.
Cass: So what kind of reaction have you got to the article yourself?
Young: I get really fun fan mail! I’ve been writing for a little bit about my experience, missing part of my arm, navigating the world this way, critiquing the industry of prosthetics. And I always expect some people to, like, be angry with me for some reason, and Reddit is great for that. If you’re fi-- if you’re looking for someone who’s got a weird, weird opinion, that-that’s where you go. Um, but the people who write me are, um, extremely sweet and, and grateful. I’ve met a lot of other one-handed people, uh, through email. They, they reach out. They’re like, “You know what? I’m just so-- I’m just so glad that you’re there and you’re writing because I have never writ-- I have never read the opinion of somebody, um, who is sim-- that has a similar opinion to me, um, in the mainstream media.” So I’m, I’m really excited about that. And a lot of engineers have also reached out. Um, they are grateful for, uh, this perspective. Um, I think that they, uh, in the spirit of human-centered design, uh, want to incorporate this kind of feedback. And so I think that the engineers who are already primed to be, uh, recipients for this kind of feedback, are the most receptive, um, and I-- but I do wonder if there are others out there who, um, are still really committed to the project of the extremely high-tech prosthetic hand that, you know, is the-- is the thing that will, will do everything for you, um, and I wonder if I have to write in a different way to reach them.
Speaking of that and moving to the broader scope of assistive technology in general, it seems like this experience with these prosthetic hands is part of a pattern of unwanted and over-engineered devices that people in other disabled communities would find very familiar. Um, for example, many people who are blind or have low vision are really exasperated by the constant attempts to reinvent the white mobility cane and by replacing it with remote, remote sensors or adding some form of augmentation. Uh, they like to point out the current canes are inexpensive, light, they fold away easily, they never need to be recharged, they provide excellent haptic feedback, and they also signal to other people that the cane user is unlikely to be able to see them. And sort of from this kind of experience, disability advocates have-- I hear this term called a disability dongle. Can you explain what a disability dongle is?
So Liz Jackson is responsible for, uh, coining that term disability dongle, um, which is a-- uh, which is an object that, um, maybe a firm, you know, come-comes up with, uh, as a-- uh, as a way to advertise their goodwill, um, toward the disability community, um, an, an object that is, uh, supposedly designed with good intention to help the disabled community when, uh, in fact, from the very get-go, this object never had the input of the disabled community. I think that when you were talking about the, um, the, the, the canes, these, these-- um, this attempt to create, like, a high-tech cane, um, there is, baked into the future design of these things, this assumption that, uh, disabled people don’t want to be seen as disabled, and they don’t want to, um, be recognized for, uh, the experiences that they have, that, like, we would all be-- we would rather be undercover. Um, and I think that that speaks to a really tricky dynamic in, in all of this, especially design for disabled people where I think one of the primary functions of a, a cosmetic prosthesis is to disappear into the crowd and to be left alone.
And I, for many, many years, wore a cosmetic prosthesis because I wanted people to leave me alone. Um, that is a very real function of a prosthesis even if outside of that, it did nothing else. I couldn’t do things with it. It couldn’t hold an umbrella, etc. Um, but disability is social. Disability is, um, is a created experience because of the way the world was built around us and how people respond to it. If there were ramps everywhere in the same way that we, like, have the availability of eyeglasses basically everywhere, it wouldn’t be seen as a problem to have, um, a mobility disability, almost wouldn’t be called a disability. Like, I’m wearing eyeglasses right now.
More-- like, so many people wear vision-correcting glasses, and yet it’s not seen as a disability. It’s so widespread, and it’s, like, s-so cheap, accessible to correct it that, um, it’s not even seen as a disability anymore. Um, and yet there’s, there’s still-- there’s so many other disabilities that require the sort of acknowledgment culturally, the acknowledgment of people around them, uh, to be able to navigate the world. I’m constantly asking for assistance for certain things. Um, your disability is-- your disability visibility is almost vital to your functioning, but also for the fight that is, like, keeping disability visible so that we can keep making things accessible for us. And if we disappear behind a, uh, high-tech cane or, um, a super awesome high-tech hand or whatever, um, that is kind of, like, not doing the work of showing that disability has needs and that they are-- they are social. You know, um, to really correct the injustices that come out of disability, they have to be seen.
Here in New York as well as other places, there’s an annual Disability Pride Parade. And I think that gets to why people would march in a parade that’s called Disability Pride. And, um, that sort of idea of advocacy brings us to another phrase that disability advocates use, which is nothing about us without us. And that speaks to-- there’s a very long history where non-disabled people, usually with good intentions, sometimes not so much, um, have been making decisions for disabled people in very fundamental things like reproductive rights or where you live and it’s very darkest aspect, who lives and who dies. So, you know, how might engineers working on assistive technology work with disabled people instead of trying to work for disabled people?
Obviously, I don’t speak for any, any significant percentage of, of disabled people. It’s like the, the single most diverse marginalized group in the world by category. Um, and yet-- I think what I try to do in my writing and public speaking is, um, try to question the work that is being done in the name of us. Um, and I think that it’s, it’s, it’s a really tricky thing. I mean, one day, maybe I wanna do a bunch of interviews with people who have decided that they wanna design things for disabled people and find out when that moment was. Was it in college? Did they meet somebody? Did they just see a video? Um, and I ask this because we’re always talking about, like, “Okay. You’re developing this product. You really need to have, um, input from the intended user.” But when is this input-- right? Like, you’ve already started the project. You’ve already deci-decided that you wanna make the high-tech hand. It’s, it’s nice if you have a trial period, um, where you fit people missing their hands with your hand and then you see how they-- and then you tinker with it a little bit.
But, like, from the get-go, the project was decided by you because you wanted to make a hand, which is fine, but you can’t then later say, “This is for disabled people.” You can say, “I just wanted to really make a hand; it’s cool. We haven’t yet perfectly recreated a hand.” That’s like an art project. Or maybe if you do a really, really good job, then maybe the robotics in this thing end up in car manufacturing or something, you know. Um, so, uh, like, part of me wants to say if you’re in the business of, quote, “helping people,” like, unquote, it would be fantastic if someone had approached you and said, “I have this specific problem. Can you help me design something for this specific problem?” And then that’s, that’s where you’re like-- that’s where the design at its core, like, at the seed moment, is invested in the person and their activities. And, like, I can’t say that that is something that has to happen for everybody, of course, but do you see the-- do you see the difference I’m trying to--?
Yeah. It’s like, what are people actually asking for instead of what do you think that they want? Or, you know, what is the nail to your hammer. Um, maybe you’re technically skilled and you want to help people, but maybe your particular skills are, are not just a great fit, and maybe there, there are other things that you could do. And there’s no shortage, I think, of disability groups who’d be very happy to tell you a list of things that they would like done.
And yet with, like, design for disabled people, uh, it’s-- it feels like people can just, like, wake up one day and say, “You know what? I’m gonna solve, like, the, like, v-vision-- all vision disabilities or-- like, um, and I’m, I’m going to just, like, single-handedly go to this, you know, engineering class and, like, propose a solution.” And, um, I think there has to be, like, more humility in this approach as if-- and it is, like, a multifaceted, pre-existing disability movement that, like, is out there that you need to educate yourself with, um, and situate yourself based on your particular skill set, um, before you make something new.
Well, that is good advice, but I’m afraid we’re going to have to leave it there. But thank you so much, Britt for, for taking the time to talk with us today.
Thank you. Thank you. I had a lot of fun.
Me too. So today in Fixing the Future, we were talking with Britt Young about high-tech prosthetics and how they really serve their users. I’m Steven Cass from IEEE Spectrum, and I hope you’ll join us next time. [music]