Disability and Progress-October 16, 2025-The Double Bind of Disability

[00:00:00] Speaker A: KPI.org greetings. [00:00:39] Speaker B: You're tuned to KFAI 90.3 FM, Minneapolis, and kfai.org you're listening to Disability and Progress, where we bring you insights into ideas about and discussions on disability topics. I'm Sam Jasmin. [00:00:54] Speaker C: I'm Charlene Dahl. [00:00:56] Speaker B: Thanks so much for listening today. Our guest is Becca Monte. Uh. Oh, help me. Help me. Becca Leone Monteleone. [00:01:08] Speaker A: I apologize. [00:01:10] Speaker B: An associate professor of disability and technology at the University of Toledo. A Fulbright scholar and researcher, her work focuses on the intersection of critical disability studies, science and technology studies, and feminist inquiry. Her new book, the Double Bind of Disability, How Medical Technology Shapes Bodily Authority, challenges the assumption that medical technologies are solely empowering for disabled people. Thank you for being with us today, Becca. [00:01:59] Speaker A: Thank you so much for having me. I'm excited for this conversation. Me too. [00:02:05] Speaker B: Can you just give us a little bit of history about how you got to this point? [00:02:12] Speaker A: Sure. Yeah, absolutely. As you said, I'm a professor of disability and technology. I work in a disability studies program. So spending a lot of my time thinking about disability as social and political in addition to being kind of biological or medical. Right. And so that's kind of the starting place, but for this particular project, you know, we are kind of constantly flooded in mainstream culture with, like, these technologies that are meant to kind of save disabled people. I feel like we get one of these stories coming out, like, every five minutes of this, like, new medical technology, and this is going to be the one that saves disabled people. Right. And so part of where this. This particular book came from, where I explore people's actual experiences of choosing and using and having conversations around these technologies, is I wanted to know more about how people actually experience medical technology. Right. And how does it also change the way then, that we think about what disability means and who gets so to create knowledge about disability? So I was really interested in seeing the ways that users of these technologies create understandings around what disability means based on their own embodied experience and whether that knowledge gets taken seriously by the doctors and technologists that they encounter as they're using these medical technologies. [00:03:45] Speaker B: So when you talk about the double bind of disability and technology, is that similar? What does that mean exactly? [00:03:54] Speaker A: Yeah. Right. So the title of the book, the Double Bind of Disability. So what I find when I talk to people about their experiences of choosing and using medical technology is that because in medical settings, we often think about disability solely as something that's, like, located in the body as a biological experience or biological, often framed as a problem, then disabled people are often tasked with being personally responsible for, quote, unquote, taking care of disability. Right. This is really different from our kind of social understandings of disability where we think about, you know, for example, with the social model of disability, that disablement happens when a non normative body mind encounters a society that's not built for it. Right. But in the clinic, it's like the problem is you. And so you are responsible for solving this problem through medical intervention. And so that's kind of one piece of it. But then the other piece of it is at the same time, in those clinical settings, people's experience and expertise about their own bodies and experiences doesn't get taken seriously. Right. So you're not allowed to be authoritative over your own experience, but you're also expected to be responsible. And so you're supposed to defer to whatever your clinician says is the best choice for you. But also you're the one who's solely responsible for what those outcomes are. And so you end up in this kind of tricky situation where you're both responsible but not able to be taken seriously. [00:05:28] Speaker B: Thank you. So I do want to kind of keep going with that because your book does challenge kind of the idea that technology always liberates disabled people. So can you give us an example of how medical technology can be both helpful and oppressive at the same time? [00:05:47] Speaker A: Yeah, right. I mean, so this is the, I think, the kind of central idea of the book because we tend to exist on these two poles here where we think either, you know, this medical technology is going to save everyone, or that medicalization of disability is something that we always need to be critiquing and always need to be pushing back on. And what we, what I found through interviewing people is it's a lot more complicated than that in the kind of day to day lives that people are living, you know. So for, for example, I have three case studies in the book, and one of those is for deep brain stimulation, which is a surgical implant that is often used for people who have neurological or, you know, neuromuscular conditions like Parkinson's disease. I can talk about what deep brain stimulation does from a societal viewpoint because what it does is it doesn't cure anything. It manages symptoms of Parkinson's. And those symptoms are often the symptoms that are most visually apparent to other people. Things like tremor, which are not, if you go and look at the literature, not necessarily the symptoms that people with Parkinson's are most concerned about or the things that affect quality of life the most. They're the ones that are most visually apparent. Right. And so we can think about that from that kind of social pressure of ableism, of conforming to a certain kind of, you know, bodily way of moving through the world. And when I talk to people about choosing deep brain stimulation, they also talk about things like, you know, I don't want to be stared at and this controls my tremor. And so people don't stare at me or I'm able to go back to work after I've had this intervention, or I hope to go back to work whether or not that outcome actually comes about. Right. And so, or I don't want to be a quote unquote burden on my, my family members who are providing care, you know, all of these kind of like social ableist pressures that bear down on people. And so we can think about that from the kind of thousand foot perspective that, that the assumption that you have to occupy a certain kind of body in order to be kind of acceptable in society, that's of course an ableist idea. But on the ground, an individual person is improving their quality of life through choosing this intervention if it is able to give them the kind of outcomes that they want to have. Right. So it's both like imposing ableism, but also for individual people kind of releasing the pressure of that ableism that they're feeling on a day to day basis. [00:08:29] Speaker B: Right. So I did notice in the book that you use case studies on genetic screening, prenatal genetic screening, also, as you just gave a kind of an example of deep brain stimulation or dbs, and also the DIY with the artificial pancreas. And I'm wondering why you chose these systems, why they were specifically, are they specific technologies that affect each other or how did you decide these things to illustrate your points on. [00:09:07] Speaker A: Yeah, thank you so much for asking that question. Because when you lay those three technologies out next to each other, it's like these things have nothing in common. Right. It's not always obvious to kind of see what the connections are. And, and actually part of the reason that I chose these three technologies is because they seemingly don't have a whole lot in common with each other, and yet they are all showing kind of similar types of knowledge interactions that happen both in the clinic and outside of it. And so, you know, there's some specific reasons I chose each one, but then putting them in conversation with each other. And so, you know, the case study around prenatal genetic screening and testing, this is something that in disability studies we've talked about for a long time and the implications of what? Screening for things like down syndrome or other kinds of trisomies prior to birth and kind of making pregnancy management decisions around them. We've talked about the implications of that in disability studies for a long time. And so, of course, that's kind of a part of what this case study is about, but it is also about how knowledge gets linked to responsibility. So what you find is that prospective parents feel that they have to undergo prenatal genetic screening and testing in order to prove that they are being responsible future parents or, you know, and then, by extension, kind of responsible citizens in society. Right. They're showing that knowledge equals responsibility, regardless of kind of what that knowledge is for. [00:10:46] Speaker B: And where do you feel that that breaks down in the routine practice? [00:10:52] Speaker A: Yeah, because of what it is that we screen. Right. You know, so what, of course, you find is that kind of the baseline screening in prenatal genetic screening and testing certainly doesn't tell you everything there is to know about the genetic makeup of a future child. Right. We're making both kind of assumptions about what it is necessary to test for, but also that you're getting the full scope of knowledge that you would need to make a decision around pregnancy management just by kind of the number of chromosomes that are present. And I think both of those things are kind of an interesting problem. You know, in the book I talk about in that case specifically, there is an absence of. Of disabled knowledge. Right. Because we don't at all, in our kind of routine prenatal screening and testing, make any effort to kind of explain what the lived experience. [00:11:47] Speaker B: Right. [00:11:49] Speaker A: With a genetic difference would be. Yeah, Right. So that's. That's around kind of prenatal genetic screening and testing with deep brain stimulation. Like I talked about, it's often this kind of responsibility to be, you know, productive to appear productive to appear normative is often kind of the choice around why to pursue deep brain stimulation. There are some other interesting things that come up in that case. You know, deep brain stimulation is brain surgery. Right. Which feels kind of scary and invasive. But what I found from people who are living in disabled body minds is that their understanding of bodily risk and bodily integrity is really different from their clinicians. Clinicians will say deep brain stimulation, that's an intervention of last resort. We're going to do all of these other kinds of things first before we think about brain surgery. But what I found from users of deep brain stimulation is that some of those other things that might, on the surface appearance kind of less invasive are actually. Actually feel a lot more invasive when you're living, you know, so things like taking a bunch of different kinds of medications that can have some significant side effects or taking medications that are heavily surveilled. Right. So if you're taking things like, you know, I spoke to someone who had deep brain stimulation for a pain disorder. So if you're taking things like opioids, the kind of surveillance that you experience is deeply invasive, even if it's not physically invasive. And so the ways in which kind of disabled and non disabled people think about risk differently, I think is another thing that comes up in the book. And this also comes up in the case of the do it yourself type 1 diabetes technologies, right? The artificial pancreas systems where people are taking their diabetes technologies like continuous glucose monitors and insulin pumps, and they are adapting them for personal use in ways that are kind of outside of what both the medical technology companies want you to do and also what clinicians are prescribing these technologies for. And there's the same kind of conversation around. I am the one who's responsible for managing my type 1 diabetes, for staying alive every day, so I should have some agency over how I do that. And I know my body. And so those are kind of things that also bring up these conversations around kind of risk and who gets to decide what risks are appropriate and what risks aren't appropriate. [00:14:31] Speaker B: You know, I'm glad you pointed all those different things out that you're. Because that your book goes into a lot of different studies on interviews with people that have done these various different things with prenatal testing and deep brain stimulation in the pancreas. DIY pancreas. And so I'd like to break it down a little and talk about prenatal testing first because there is so much, I feel like so much tension, like you pointed out, a responsible parent, sort of. And people may get a lot of pushback whether they decline or take the testing. And so I'm wondering how you can, how you think clinicians can reduce, you know, the moral pressures while still informing patients. [00:15:21] Speaker A: That's a great question because I do think this is the case where there is this kind of most tension that exists both kind of socially and in the clinic because it seems like, you know, so. So Reyna Rapp, who was, who did some work on prenatal genetic testing as a scholar, talks about the people who do prenatal genetic testing as kind of quote, unquote, moral pioneers. They're confronted with these choices that didn't otherwise exist. Right. Or didn't previously exist. And it seems like no matter what choice you make, you're making the wrong one. Right. And so I think for me it really is as you talk about, about the context. Right. I don't think any of these technologies that I talk about are objectively, always morally good or morally bad. Right. It's about the contexts in which we use them. And I do think that being kind of very clear and explicit about what prenatal genetic screening versus prenatal genetic testing does or doesn't do, I think is kind of a key first step. Right. So a talking about the technology itself, right. That you're not screening for every single thing there is to screen for. And in fact, you know, one of the case studies or one of the interviews that I did in that case study, the, the person I was speaking to had the opportunity to do a full panel screen that looks at all of these other additional kind of genetic tests. And their clinician said, oh, don't do that, because if you do that, you'll find something. Right. As so it's making this assumption that like the stuff that we screen for in the basic test testing, that's something you definitely need to know about, but otherwise there's like too much that you could know about. [00:17:06] Speaker B: Right. [00:17:07] Speaker A: And so that, that contradiction is, is so interesting to me. Right. That you, you have to be responsible and know something. But if you know too much, which is more than your clinician says you should know, then all of a sudden that's irresponsible. So I, I, or, or just puts. [00:17:24] Speaker B: Pressures in different areas that you, you would have to, you might think you need to make different decisions on something. [00:17:31] Speaker A: Exactly. [00:17:32] Speaker B: And it may not even be true. I mean, I mean that there's a sense of false test too, right? [00:17:40] Speaker A: Yeah, absolutely. I mean, especially as we're thinking about these, the introduction of these screening tests or these screening procedures, something like non invasive prenatal screening, which is a blood draw, which is a much lower risk than kind of the traditional testing like an amniocentesis. And so it's offered to more people, which means that it's given with less context. Right. So I think the context is really important here. And I think the other thing that is really important to me is the explanation that the presence or absence of certain genetic markers isn't a definitive explanation of what a person's life is going to look like. Right. With the presence or absence of those markers. You know, I talk about in the book, I say what is it about, you know, the presence of an extra chromosome on a karyotype that feels more real to people than people with down syndrome explaining what their lives are like. Right. We value one of those as having kind of more real information than the other. And so the kind of absence of the lived experience of disability in those explanations of genetic difference in the clinic is another kind of major problem that I see. [00:18:52] Speaker B: I'm just wondering, I'm thinking here, and I feel like since Dobbs, the overturning in the court, do you feel that abortion restrictions might reshape counseling and how testing pathways and pregnancy people are done? [00:19:13] Speaker A: Oh, yeah. I mean, absolutely. I don't know that I know exactly how it will do. So I have some guesses. And part of those are that you can do some of these non invasive screens earlier in pregnancy than you can do some of these definitive diagnostics. Right. And so I imagine what that means is that there's going to be a heavier reliance on these, on these screening outcomes for pregnancy management decisions, which then I think makes that context, that explanation is even more important. Right. Screening is around the probability of something rather than the definitive presence of it. Right. So that's the distinction between a screening test and a screening procedure and a diagnostic test. And so if we're just relying on these screening tests, then I think we need to be kind of very, very clear about what it is that they do and don't do. And we just are not very good at that. And in the way that we present that information. [00:20:14] Speaker B: Right now I want to jump to the deep brain stimulation or dbs, and I'm wondering if you could discuss a little bit about what side effects or life impacts are least acknowledged by device makers and clinics. [00:20:35] Speaker A: Yeah, so this is a really interesting case. So deep brain stimulation is used for a lot of different things. Things. And because of that kind of, the experiences of it are very, very different. But just drawing from my own case study, right, from the old, from the interviews that I conducted, one of the things that came up again and again is that often people would experience, you know, mental health or psychological outcomes that were potentially related to dbs, potentially related to whatever their underlying condition was. And there was this kind of discrediting of those experiences in the clinic. There's this kind of division that seems to get made between the brain and the mind. Right. That deep brain stimulation addresses those kind of neurological pieces of it. And so if you're experiencing something like increased anxiety or suicidal ideation or hallucinations following dbs, well, that's something else. Right. That's not related to increasing evidence that of course those things are related to each other. And in fact, I had. I had one woman I spoke to who experienced some. Some mental health side effects after her DBS adjustments. And she went to her clinician, and the clinician was like, no, it's unrelated, it's unrelated, it's unrelated. But then she found like, a community outside of. Of her clinician of other people who had received deep brain stimulation who said, oh, yeah, this is something that happened to me, or this is something that happened to someone that I know and was able to connect her with another, you know, more affirming clinician who. [00:22:18] Speaker B: Yeah. [00:22:19] Speaker A: Manage those symptoms. [00:22:21] Speaker B: So it really might kind of hinge on what clinicians are studying, reading, listening to their patients. I mean, it sounds like, you know, the medical device people are the medical device people, and they. They don't necessarily test it on themselves. So, you know, they know only so much. But there's a lot that goes into. Especially putting something on the brain that we don't even know tons of stuff about the brain. So it would make sense that there are things that happen that maybe aren't specifically on the package of warnings, so to speak. [00:23:09] Speaker A: Sure. Right. And I think, you know, this idea that for the most part, our clinicians don't experience the conditions that we bring to them. This is a problem that exists for, I think, all of us when we. When we go to the doctor. Right. It's a. It. It creates this kind of communication breakdown often where it's, you know, if the. The thing that I'm experiencing, I use words to describe it that make sense to me and my embodied experience, but they don't match up with the words that the. That the doctor has necessarily learned from the textbook. And the doctor doesn't have the lived experience to kind of map on to what I'm describing. That can mean that those things don't get heard. Right. That's like a communication breakdown. This idea of what I call in the book kind of epistemic invalidation. Right. That the embodied experience, because it doesn't quite match up, just gets dismissed often. [00:24:05] Speaker B: Yeah, let's talk a little bit about that, because that's true. You do give examples of things that when the patient goes to their. Or the person goes to their medical doctor, that. And talks about their lived experience, that the medical. Medical doctor says, no, this isn't a part of that, or it's something else. So why do you think that happens? [00:24:29] Speaker A: What. [00:24:29] Speaker B: What is it? That's the disconnect between that the doctor isn't listening to that person and not being. And that person isn't being heard. [00:24:41] Speaker A: I think it, it varies case to case, but I think often, you know, there are a couple of things that come to mind. Right. And so one is this, this kind of communication breakdown that we have, that, that the way that we experience our embodiment is different from the words that we use to describe it, which are different from the words that, that medical clinicians are trained to recognize. Right. I don't know if you've ever had this experience where, where you go to a doctor and they're like, well, is it more of a thrumming pain? [00:25:17] Speaker B: I love that. [00:25:17] Speaker A: Right. [00:25:18] Speaker B: Like, what does that mean? That's what I always think, Thrumming. [00:25:22] Speaker A: What does that mean? That's the answer I'm supposed to give you, right? [00:25:25] Speaker B: Yeah, exactly. And I think that could be a lot of people that they think they don't understand those terms, like what that would. How that relates to the feeling and what they're feeling. [00:25:39] Speaker A: And I think actually on the flip side of this is something that comes up during the case on the do it yourself artificial pancreas system, which really is. Is a case about a community of people who have kind of rejected this passive patient role for a more agency driven or autonomy driven kind of role where they're creating or adapting their own medical technologies, that sometimes when you come into a clinical encounter and it appears that you're presenting yourself with too much authority, that that can also be met with resistance by a clinician when you're like, well, I know what I'm talking about. And that can sometimes feel like a challenge, clinical authority, that means that you might not get hurt in those circumstances either. [00:26:27] Speaker B: Becca, I'm wondering, can you kind of go into, because your book goes into the diy, the artificial pancreas. And if you can go into a little bit about how people are, you know, manage in general their diabetes with. And then how it's different with the DIY apps. [00:26:48] Speaker A: Oh, sure, yeah. I mean, so just to give a kind of general overview of what this looks like. Yeah, so. So this is primarily people who have type 1 diabetes or sometimes what's kind of colloquially called like one and a half, which is, you know, similar to type 1 diabetes but usually diagnosed in adulthood. And so this is insulin sensitive diabetes. So people are using insulin as, as their kind of primary treatment for, for their blood sugar. And so traditionally, kind of the way that you would manage type 1 diabetes on a day to day basis is you are testing your blood sugar and then you are administering insulin as you need to, to kind of make sure. That your blood sugar stays within an appropriate range. Right. And. And that is impacted by all sorts of things. Right. Blood sugar is really sensitive to a lot of things, whether you're sitting sick that day or didn't get enough sleep or whatever you're eating or how much exercise you did or stress or all of these things. And so what often people with type 1 diabetes will say is that, you know, it's a kind of thankless task. Right, Right. So, like, the. The. One of the people that I interviewed was like, you know, if you do everything perfectly with type 1 diabetes management, you don't get a reward at the end of it. You just don't die. Right. Or you don't. [00:28:07] Speaker B: Or you might get. I mean, there's all sorts of stuff, too, though. You know, I work with people with diabetics. But if you manage it better, maybe you don't lose your vision and maybe you don't get as much neuropathy. I mean, there are good things for trying to keep your insulin levels as good as you can. But, yes, there's no, you know, you don't see the reward, except you may not be as bad as the next person that has diabetes or sometimes I feel like I've seen you do people do things so well, but they still get the problems, so. [00:28:44] Speaker A: Exactly. Right. So. Right. I mean, of course. Right. Of course there are health benefits to managing your. Your diabetes well. But when I was speaking to this particular interviewee that I'm thinking of, the thing that she was pointing to was that this leads to a lot of. Kind of. It can lead to a lot of exhaustion. Right. Because it feels like, you know, I'm doing all of this work, all of this management, all of this kind of the cognitive load of the constant management of type 1 diabetes. And it's all on me all the time. Right. The responsibility rests on me. And then if I go into the doctor's office and they're like, well, your A1C has not been great. [00:29:21] Speaker B: Right. [00:29:22] Speaker A: Then all of a sudden there's like this blame and guilt that gets associated with it, despite the fact that even kind of with the sort of best clinical tools available to us, management of type 1 diabetes is really hard. And it varies drastically, as you're saying, from person to person. And so this DIY community, it emerged from actually initially from a woman named Dana Lewis in the United States, who all that she was looking for at the time was that, you know, she was managing her. Her blood sugar, and she was monitoring her blood sugar with a continuous glucose Monitor. And so at night her blood sugar would dip into potentially kind of dangerously low levels. Because in addition to high blood sugar being a problem, if you administer too much insulin and your blood sugar is too low, that is also, you know, potentially life threatening. [00:30:17] Speaker B: Right. [00:30:18] Speaker A: But her monitor wasn't loud enough to wake her up at night. And so she initially reached out to the company that manufactured it and she was like, you know, this isn't working for me. This is kind of a dangerous situation because if I don't wake up, then that could be a potentially life threatening situation. And the response that she got from the company was like a little bit flippant, like, well, you know, it's something we'll work on for the future. And so she, working with some collaborators, was able to kind of pull her continuous glucose monitor data off of her device and onto a computer, where then she could both share that data with other people. So if it went dangerously low, it could alert other people in addition to her, but also then she could manage the alarm herself. [00:31:05] Speaker B: Ah, yes. And. And in a sense, I, I would presume have a little bit more of an independent lifestyle or maybe she wouldn't need a roommate or, you know, somebody could alert her if they saw it. [00:31:17] Speaker A: Exactly, exactly. Right. And so that was kind of step one. And then they realized kind of when they had access to this data that they might be able to then kind of link it into using an, what is now an open source algorithm, link it into her insulin pump, which is what automatically then administers insulin. As you know, it's not automatic usually. Right. You're usually manually saying how much insulin you're going to administer. But could you have these kind of two pieces of technology work together to sort of remove the everyday management from those decisions so that it's automatically adjusting based on what those readings are? And so that's a kind of impetus for this diy. The technology is a little bit more complicated than that. The human is a little bit more involved than that. But that's the sort of idea is connecting these two pieces of technology so that you have to, you know, a direct quote from one of my interviews is interviews is to, quote, think less about staying alive. Right. So removing some of that kind of every day, every minute management work, I. [00:32:24] Speaker B: Feel like maybe like the designers and developers of these technologies are sort of far removed from the actual subjects that have these diseases or issues. And I'm wondering how you feel like what people could do to change that, because I think the closer you work with the designers and the developers, of these technologies and make them care, besides doing lawsuits to them, how else could that be fixed? [00:33:01] Speaker A: Well, I actually think this DIY artificial pancreas system is a really good example of this because there have been now a kind of number of both partnerships between people who started out in this DIY community and these more kind of traditional medical technology companies. But there's also been a number of startups that are driven by DIYers to produce something that could then go through FDA approval. So something that is this artificial pancreas system that has this sort of customized and kind of semi automatic delivery of insulin that is now kind of moving through FDA approval in order to be commercially available. Because right now, I mean, the way that, that these DIY technologies work is you got to build it yourself because it's illegal. It's illegal to sell it to someone. Right. And so I do think we can see this model around how to integrate this lived experience. And I think DIY artificial pancreas system is a great example of this. It's a little bit trickier in some of these other settings. I spoke to people, again with deep brain stimulation, who some of them have had conversations and partnerships and so forth with medical technology companies. Often they are used as like marketing materials, though, to be like, look at these great outcomes. Now let's sell more of these devices rather than kind of what feels like an authentic engagement with people's actual lived experience. And, you know, in fact, I had one informant say to me, you know, I wish that instead of a conference of three doctors talking to 100 people with Parkinson's disease, it was people with Parkinson's disease talking to 100 doctors. But doctors wouldn't come to that. Right. And so there seems to still be this authority gap that exists that we view kind of experiential or lived or embodied expertise as being supplemental rather than, as you're saying, it should be essential to how we build these technologies. [00:35:11] Speaker B: I'm wondering, as a Fulbright scholar, you've done global research, how has this affected your outlook and knowledge of disability and technology in our part of the world? [00:35:30] Speaker A: Oh, that is a great question. So there's a couple of things that I think about here. Is that something that's really key to the argument that I'm making in this book is particularly around, like, this idea of collective knowledge that so many people turn to informal communities of other people with shared experiences to share that knowledge and having access to methods to share that knowledge collectively. So, like, whether that's the Internet or something else. Right. Having these kind of global communities to share knowledge, I think is really, really crucial. So I think that's kind of one piece of it. And then I think thinking globally. The other thing that really strikes me about medical technology is that it's almost never a kind of one and done deal. Particularly something like if you're getting an implant or if you have a system technology that you use every day. It's not like you just stop by your doctor one time and they give it to you and you never have any. [00:36:41] Speaker B: Always upkeep or something. [00:36:44] Speaker A: Yeah, right. I think about, you know, people who have advanced prosthetics who have to kind of mail them away to a company in Germany for six months to get fixed or something like that. Right. And so thinking about the ways that we often don't have, like, human infrastructure in place around the delivery of medical technology, even thinking about something like, you know, deep brain stimulation, which requires, you know, some adjustments that get made every so often. If you live in an area where you need to find some way to get to a clinic that's four hours away, like if you're in a rural area, you know, what are, what are the mechanisms by which you can do that? And is it really, you know, an informed choice to have that implant? Not knowing or not maybe understanding that that is something that needs to be part of your, you know, your life now from, from here on out, is that you're going to need to find a way to get to this clinic that's four hours away every six months for the next year or the next two years or whatever it might be. Right, right. And so thinking about, you know, how that the kind of delivery of technology without thinking through what that looks like for kind of lived experience, I think that in part, you know, I hadn't thought it made that connection directly before, but I think that does in part come from having this kind of more global understanding of experience. [00:38:11] Speaker B: You know, also, you know, you, you know, your work often kind of, it does focus on the systemic invalidation of disabled experience expertise. And so I'm wondering, do you have personal expertise on this or were you close to somebody? What made you go down this path of inquiry? [00:38:33] Speaker A: Oh, around kind of how and why we invalidate disabled experts. Right, sure. Again, I think that's a great question. You know, so the. The kind of other strand of my work that I think really informs us is that I work very closely with people with intellectual disabilities. And so I think a lot about how knowledge gets invalidated from people who are kind of who speak in non normative ways, or don't speak at all, or don't read or don't write. And so the ways in which kind of that knowledge production happens and how other people then get to kind of swoop in and make choices, you know, often kind of positing it as like, it's in your best interest if I make this kind of choice for you because you couldn't understand. And it's like, I think you see that same thing happening in these kind of medical clinical settings. It's often this idea that, like, well, you don't understand how this technology works, or you don't understand how your condition works, or you don't understand it in the right way. And so I'm going to make that choice. And so I think in some ways it's like this paternalism that we see generally around disabled people, but in this kind of very specific application. So I hope that answers the question. [00:39:54] Speaker B: So being a professor of disabilities and technology, I'm wondering, what misconceptions do you most often encounter about the field of disability studies? [00:40:06] Speaker A: Oh, I love that question. So I think if I'm thinking about kind of disability and technology specifically, there is this kind of big misconception that we just have to get to the right technologies and we'll solve ableism. [00:40:24] Speaker B: Right? [00:40:26] Speaker A: This idea that, like, if we just, like, have. That we just haven't found the right technology yet. And I think often those technologies are rooted in this, like, curative logic, right. That if we just like, quote, unquote, take care of the problem of disability, which is often kind of conceptualized as the embodied part of disability, then we don't need to worry about the ableism of it. All. Right. And so I think that that's a really big misconception and part of why I teach a class called Disability, Technology and Society. Kind of the big point that I try to make in that class is that better technology doesn't necessarily equal a better society. You know, it might. Right. But I think then we have to be really clear about what we mean by better and better for who? [00:41:16] Speaker B: Yes, that's right. Better for whom? [00:41:18] Speaker A: Yes. [00:41:19] Speaker B: What do you hope your book changes? [00:41:25] Speaker A: I really hope that it changes some of that misconception that I was just speaking about there. Right. That the only way kind of forward around, kind of how do we address the injustices faced by disabled people is through medical technology. Right. I think that there are. And that isn't to say that people can't or shouldn't pursue medical technology or that people, disabled people can't you can't desire cure or preventative care or whatever it might be. Right. In fact, I think it's so, so important to recognize that so many people, disabled people, want to access health care and do not have access to it. Right. And so this isn't a book that's saying medical technology is bad or that doctors are bad or that disabled people should reject the kind of medical establishment entirely, but to instead kind of point to the ways that we can think through having different choices available to us and that those choices don't have to be moral, like positioned as moral choices. Right. That you can choose to adopt a medical technology, but you should also have the right to not choose that medical technology and still be able to live a full, thriving, flourishing life. Right. That, that both of those things can be true at the same time. And that, you know, one of the things I close with is like that disabled people's relationship with technology is not, you know, wholly liberatory or wholly oppressive. And in fact, it is just like day to day life. And so being able to kind of, what I say, like demythologize technology a little bit because it's important. Of course it's important, but it's not the most important thing. And the most important thing is that we listen to disabled people about the kinds of lives that they want to live. [00:43:24] Speaker B: You know, I go back to this idea of just thinking when I asked you the question and you said that the technology is often made, you know, you might have technology, and the idea is it makes things better, but better for whom? And I think that was a real key answer because there's, if you look at any one disability, there's a lot of different technology, but it doesn't, it's not always the right technology. Right. It makes one or two things better, but then there's all these other things that are still not there. And then you might get another piece of technology that makes these two things better. And not only the cost of the technology, but just having so much of it. Like we, I really feel like we need a tech, you know, technology that, that encompasses the person as a whole, what would make their life better and the things that they struggle with. So if you can't see what will make your life better with reading cans, boxes and recipes, plus knowing your surroundings, not three or four different things that you would have to encompass to do that. So that is something that I think that we're having. We're coming into the world, the time of technology, right? We got AI, we got so many things but it isn't always wrapped up in one nice package. [00:45:02] Speaker A: Oh, you know, I love that insight. Right. I think that's really key here. And I think that is something that moves away from this, like, deeply medicalized understanding of disability where we often kind of are laser focused on solving, you know, again, heavy air quotes here. Right. Solving one specific biological process. Yep. That we just like, forget about people as people who then navigate the world and have to do many things simultaneously. Right. And so instead of you needing 15 different apps and four different devices in order to navigate the world, you know, what is, what is a technology? That's a sort of wraparound technology. The other thing that I've been thinking about quite a lot lately and having some conversations around is that we often kind of valorize the use of technology as necessary for independence. We use this kind of independent framing all the time. And because that we often devalue human support and we devalue interdependence. And so I wonder about what is it that inherently makes using, you know, a technology that assists with wayfinding? What is it that makes that inherently better than using a human guide? Right. And so I think those are questions that are worth having, you know, because you're still. You're still dependent on the frailties of that technology the same way that you're dependent on an imperfect human guide. Right. But one is considered independent and one is not. Which I think really goes against kind of what disability rights activists have been saying about what the independent living movement is anyway. Right. The independent living movement was never about doing everything by yourself. Right. It was about having the autonomy to make those choices with the kinds of support that you desire. Right. [00:47:00] Speaker B: Well, that's what it should be about. But there are different thoughts out there of what that means independence. That's a whole nother show. You know, I think there are other bodies of groups that think independence is truly, can you independently do everything by yourself? And I'm not sure that's the goal. I feel like you're never going to be a person with a disability. This is not a perfect world, and this is a world, whether we like it or not, built for non disabled people. So the idea to me as a teacher of technology and Braille, is how do we keep ourselves on the same playing ground as much as possible as everyone else? Because it's not going to be fair. But what can we do to make it as fair as possible? So I think that is, and that goes to your point of view, how many different things there are or options there are out there for you to use to achieve, you know, X, Y or z. I'm wondering what was the hardest person or hardest thing that you. What did you find the hardest about researching and writing this book? Like. [00:48:22] Speaker A: Oh, you know, I struggled for a long time with how to make sure. So, you know, at the center of these case studies are interviews with users of these technologies. And the thing that, that remained really central for me is how do I make sure that I'm honoring these stories as they are being presented to me. I think in research we can often, you know, like, overanalyze people's lived experiences. Right? We can try to, you know, twist these experiences and apply them to make some kind of fancy new theory with all of the jargon associated with it. And because of that, I think we sometimes kind of lose people's actual lived experiences in this. And so I spent a long time kind of thinking through how do I make sure that. That this work is actually, actually reflective of these lived experiences and not me kind of extracting that knowledge the way that that knowledge has been extracted from disabled people forever and used for its own purposes. And so I think that's the thing that I think I really kind of tried to work through the most as I was, as I was writing the book. [00:49:42] Speaker B: If you could sum up in one or two minutes, what do you want people who are non disabled to take away from your book and people who are disabled to take away from your book? And I presume it might be kind of two different things. [00:49:57] Speaker A: Yeah, yeah, I love that. Okay, so I think for non disabled people, just kind of general people, not necessarily people who are working in medical settings, not necessarily people who are designing these technologies. I really think that this idea that we all have different approaches to thinking about our embodiment and about kind of what feels like a comfortable risk to take, that that changes depending on what our lived experiences and that disabled people have a different understanding of embodiment of experience of the world than non disabled people do. That then informs the kinds of decisions that they want to make. And I say that because hope that then non disabled people are less likely to. Or quick to kind of judge the decisions that a disabled person might make to either adopt or not adopt one of these technologies or something like that. Right. To understand contextual experience. Because I do think, you know, so much of these choices get made because of that, that social pressure, because of that fear of judgment that comes. And then I think for disabled people, I really hope that they read the book and see it as a celebration of disabled wisdom, of embodied knowledge, that those things are so, so valuable even when they don't make their way into those clinical settings or if they haven't made their way into the technology design yet. You can see all throughout the book how these kind of informal communities of sharing knowledge have been life saving and life affirming for many of the people that I spoke to. And so I hope that disabled people are able to kind of see that in celebration. [00:51:51] Speaker B: How can we, where can we find your book. [00:51:56] Speaker A: So you can find it? The best place to go is the University of Minnesota Press website and order it directly from there, but it's also available wherever books are sold, Barnes and. [00:52:06] Speaker B: Noble and Amazon, all those places. All right. Well, Becca, it's been great. Thank you. [00:52:16] Speaker A: Yeah, thank you so much. This is wonderful. [00:52:18] Speaker B: Charlene, did you have any questions? [00:52:20] Speaker C: No. I learned a lot as a person with a disability also. There's so much that goes on in your life and sometimes it's good to have the opportunity to look in a different direction, to see what's going on with yourself and others. [00:52:45] Speaker B: Thank you very much for being on with us today. You're tuned to KFAI 90.3 FM, Minneapolis, and KFAI.org this is has been disability in progress. The views expressed on the show are not necessarily those of KFAI or its board of directors. My name is Sam Jasmin. I've been the host of this show. Charlene Dahl is my PR research person. We've been speaking with Becca Montelion about the double bind of disability, how medical technology shapes bodily authority, challenges the authority, challenges the assumption that medical technologies are solely empowering for disabled people. Thank you for joining us. Please remember you can be on my email [email protected] Also, we are podcasted, so feel free to look us up there and tune in next time. Take care.