For today’s podcast, Brandy Schillace, EIC, interviews Jaipreet Virdi, PhD, about her latest book, Hearing Happiness.
- Listen Now [transcript below]
At the age of four, Jaipreet Virdi’s world went silent. A severe case of meningitis left her alive but deaf, suddenly treated differently by everyone. Her deafness downplayed by society and doctors, she struggled to “pass” as hearing for most of her life. Countless cures, treatments, and technologies led to dead ends. Never quite deaf enough for the Deaf community or quite hearing enough for the “normal” majority, Virdi was stuck in aural limbo for years. It wasn’t until her thirties, exasperated by problems with new digital hearing aids, that she began to actively assert her deafness and reexamine society’s—and her own—perception of life as a deaf person in America.
Through lyrical history and personal memoir, Hearing Happiness raises pivotal questions about deafness in American society and the endless quest for a cure. Taking us from the 1860s up to the present, Virdi combs archives and museums in order to understand the long history of curious cures: ear trumpets, violet ray apparatuses, vibrating massagers, electrotherapy machines, airplane diving, bloodletting, skull hammering, and many more. Hundreds of procedures and products have promised grand miracles but always failed to deliver a universal cure—a harmful legacy that is still present in contemporary biomedicine.
Join us for this interview, which discusses the book and also delves into the issues of accessibility, and the need for conscious design that seeks and takes seriously the expertise of the disabled community.
Bio: Jaipreet Virdi is Assistant Professor of history of medicine, technology, and disability at the University of Delaware. She is author of Hearing Happiness: Deafness Cures in History (University of Chicago Press, 2020) and co-editor of Disability and the Victorians: Attitudes, Legacies, Interventions (Manchester University Press, 2020).
Links: You can find Jai on Twitter as @jaivirdi or visit her website jaivirdi.com
Transcript
BRANDY SCHILLACE: Good morning, and welcome back to the Medical Humanities Podcast. I’m Brandy Schillace, the editor. And today I have with me Jaipreet Virdi, who is a historian of medicine, technology, and disability, to talk about her first book, Hearing Happiness: Deafness Cures in History, which came out this past May from the University of Chicago Press. It’s so nice to have you on with us today.
JAIPREET VIRDI: Thank you for having me here today.
BRANDY: Could you tell us a little bit more about your background? I’ve known you for a number of years, and I’ve always been fascinated by your research. So, maybe you could say a bit about that to our listeners.
JAIPREET: Oh, sure. Well, I received my MA and my PhD from the Institute for the History and Philosophy of Science and Technology at the University of Toronto. And then I held a postdoctoral position at Brock University before starting my current position as Assistant Professor at the University of Delaware. I’ve always been kind of fascinated by the development of medical technologies that we use for diagnosing. So, one of my first articles was about the invention of a diagnostic instrument for protecting hearing, but it was never actually invented; it was just created. And I talk a lot about what that means when we’re trying to diagnose hearing. So, I think from there, I became more interested in looking at the opposite angle, to how were, for instance, deaf people responding to these attempts to diagnose the various types of hearing losses. Or how were they reacting to the kind of treatment that was imposed upon them, not just by medical practitioners or by specialists or even by, you know, the industry, like the hearing aid industry or the broader culture. But also how their family members and loved ones were kind of pushing treatment on them.
And that was kind of the heart of Hearing Happiness, trying to look at both the top-down history of medical development and understanding with quackery first in the history of medicine, but also looking at the ways in which people responded to these kinds of cures: how they chose upon various options that were advertised or offered to them by specialists, how they made their decision to fight for a patent medicine cure, or how they chose among different kinds of hearing aids. So, it was really important for me to, I think, uncover this kind of history because we don’t really see this history existing right now, at least not in a very nuanced depth way in existing scholarship.
BRANDY: I agree. And I think it’s very interesting, too, because one of the things we talk about some at Medical Humanities and have spoken about is the sense that we hear about communities instead of from them. And that’s very, very frequent. And that’s also true in the context of global health as well, where you’re always hearing about a culture; you’re not hearing from them. And I think it’s interesting that this is true right here in the United States and in the United Kingdom and other places about everything from various disabilities. You hear about the doctors. You don’t always hear back from the patients about how do they feel about these technologies. Is that what influenced the title Hearing Happiness?
JAIPREET: [chuckles] What the title was actually kind of a spur of the moment brainstorm. My press didn’t like my original title, which I cannot remember. I think it was just called Deafness Cures in History. And they felt like it wasn’t, you know, wow.
BRANDY: [laughs]
JAIPREET: And I have to be honest. I didn’t either. And it didn’t, it didn’t really emphasize what I think was the core message of the book. So, I went in the archive, and I was looking at a collection of hearing aid advertisements. And there was one little tag connected to a hearing aid, and it said, “Your key to hearing happiness.”
BRANDY: Mm.
JAIPREET: And I thought that was just brilliant. Like, what does this even mean, you know? There was nothing else in that little piece of card, just, “Your key to hearing happiness.” And it’s connected to the hearing aid. It’s like, this is the solution right then and there. Everything you’re looking for, you’re gonna find it in this piece of technology. So, I think right then and there, it just clicked, and I felt like the title had many different layers about what happiness means, what hearing means and can be interpreted in different ways. And of course, there’s that alliteration right there as well!
BRANDY: Right. No, it’s lovely. I think, too, the concept that any technology is the key to happiness, you know, it’s that silver bullet idea that this will solve problems. Which, of course, imagines that there is a problem first.
JAIPREET: Yeah.
BRANDY: So, that’s an interesting avenue in your book as well about how people feel about this concept. How did you put it? Having cures forced upon them.
JAIPREET: Well, one of the things that I talked about, specifically relating to technology, is that there’s this pre-assumption when a technology introduced and promoted as a cure or even as a hope for the deaf and was very common in the 20th century, there’s that assumption that it’s going to fix all the problems. Buying a hearing aid will help you get a job or help you find a partner and get married, you know, or you feel more equal in society. It would alleviate the stigma that’s leveled against you. But what I learned through my research is that, as with any new technology that is introduce for the first time, there are a lot of complications with it. And we don’t really see these complications when we just look at the promotional advertising or other materials from the actual companies. But when we look at it from the users’ point of view, you know, they would complain about a hearing aid that becomes staticky, that didn’t always provide clear, a clarity of sound, or that they had to struggle and adjust in order to fit their body to these hearing aids. So, basically, they had to learn how to use this in order to have it work for them.
Well, what I found fascinating was that in the early 20th century, this was something that hearing aid companies were very well aware of. They knew there were major technological problems with their devices, and they’re constantly improving on the engineering and design features of them. But they also offered these electric therapy products on the side as well. So, if you purchased a hearing aid from this company and then you realized it didn’t work for you, then the hearing aid company would offer an alternative, this kind of quackery, vibratory gizmo, I guess, where you try to fix your hearing yourself. And I thought that was so fascinating. Like why are hearing aid companies doing this? Are their hearing aids the solution? But it’s like, no, they know it’s not there yet. It’s a prosthetic. It’s not right there as a cure. And what they really wanted to do was offer the cure. And they did that until the Food and Drug Administration changed the law about electrotherapy products.
BRANDY: That’s fascinating. And I think so interesting about how there’s not a lot of, why were they not contacting people in the community to say, “What would help you?” You know, it always seems to be a very top-down what we think the solution will be.
JAIPREET: Well, first thing, of course, is to include the opinion, the expertise, and the background of the disabled in making these technologies. And mind you, hearing aid companies did recruit some deaf people to consult with their devices when they were making them. And there were also people who were working for hearing aid companies who were deaf or hard of hearing themselves. So, there was the level of expertise. But one thing about deafness is that it’s essentially a spectrum. If you’re only making a technology that’s going to fit for people who might be classified as partially deaf or moderately deaf, but you don’t really touch the more severe types of hearing loss, because there’s the assumption that people in that group are Deaf with a capital D and only need sign language, then essentially you’re limiting the range of the benefits of these technologies as you want to promote them. So, including the expertise, the experiences of deaf people, I think, would really improve the technology.
I mean, we talk about this a lot even now, when, for example, Twitter decided to lay out their voice tweets, and it was revealed that they didn’t really consult people in the disability community in making this. I mean, we could’ve all told you right off the bat this is not really accessible.
BRANDY: [chuckles]
JAIPREET: And then with like multiple ways. It’s not even the fact that these tweets were not captioned, but also the flashing light that they had were a trigger for people with epilepsy and other kind of neurological disorders. So, that was completely left out in their assessment. So, having disabled people working with engineering and technology right from the beginning, in other words, designing with disability in mind right from the get-go, not as an afterthought, would also really solve a lot of these problems with technological accessibility or inaccessibility.
BRANDY: Mmhmm. I like that idea of bringing it into the design itself, the design phase. I had a chat with Chris Higgins earlier this month and another with Alice Wong, and we talked, and a couple other folks, too, including Cheryl Green, these were people that have said this all along, that the problem is so much at the time the technology is developed and then tested on the disabled community, rather than having the disabled community be part of how you design. And so much of this goes back to the lack of accessibility and even a lack of understanding a need for accessibility. For instance, we’ll be providing a transcript of this podcast. We provide transcripts for all our podcasts now.
JAIPREET: Mmhmm.
BRANDY: We just started doing that this year. And that’s simply, it was just one of those things that it had to be brought to my attention. And immediately I thought, oh, my goodness. Why have we not, why haven’t we done that?
JAIPREET: Yes.
BRANDY: You know, because so much of the time, the automatic captures are not really, they’re not terribly good. It’s much better to have a human being actually transcribing. And the same thing, now Twitter allows you to put alt text into pictures that you upload, but most of us don’t know how to do that well. So, yes, it just shows this absence of understanding.
JAIPREET: Yeah. The thing is also this idea that, well, how many people are really going to benefit from this, right? So, it’s like if you’re going to put alt text in your images, the assumption is that well, there’s only going to be, that you believe that there’s only a few people who might benefit from it, so you’re not going to do it. But that’s not the point. The point is like it’s there. It takes 30 seconds to just come up with some kind of description. And if you’re going to put the effort in editing your photo, choosing the filter, to post it on Twitter, then why can’t you take that extra 30 seconds to just put an alt text description and make your tweet or post or whatever it is more accessible to people? I mean, one of the arguments I always make, again, people who refuse to provide any kind of accommodation, whether it’s captioning or alt text or a transcript, is, don’t you want people to know what you’re doing? [laughs] Isn’t that the point? You’re making a podcast, or you’re making a little video. Don’t you want to maximize the audience as much as possible? And then why are you limiting yourself here?
BRANDY: Mmhmm.
JAIPREET: And I think that’s what people often forget. It’s like the audience is very, very varied.
And then we also have to account for the fact they might be people who are disabled but don’t necessarily want to reveal that. And when they see accessibility features for them, it is more accessible. And it provides them a security and comfort in the communication that they might not have been aware of before.
BRANDY: Mmhmm.
JAIPREET: So, I think that really important that we acknowledge that fact, and well, that accessibility isn’t always for disabled people. It’s really for everyone.
BRANDY: Mmhmm. Yes. And actually, I appreciate transcripts myself. I’m actually not the most auditory learner personally.
JAIPREET: Mmhmm.
BRANDY: And I almost always, if I’m capturing something, I have to have it so that I can reference it later. And so, and I’m not somebody who has a disability in that sense, but at the same time, everyone can benefit. So, there’s multiple ways into this information, that’s a universal benefit for everyone.
And I wanted to ask you a quick question, because I know we talked about it earlier. I am someone running a podcast. There’s lots of people running podcasts. And we often don’t know how to find proper technologies or apps or means of making things more accessible. I happen to be very lucky in that I have a transcriptionist that I use. But in terms of captioning services, where should people look for these kinds of technologies? What’s available?
JAIPREET: I think that’s a very difficult question, because one of the things you don’t want to do—and I don’t want to advocate this either—because I think it’s unfair work, in that you can ask disabled people what they’re using. But, you know, it does require free labor for the most part. I mean, I spent almost my entire summer consulting for many different organizations and departments and individuals where to find appropriate captioning app and how to use it. And I was also testing a lot of these apps.
BRANDY: Mmhmm.
JAIPREET: And that was many, many man hours on my part.
BRANDY: Yeah.
JAIPREET: But I thought, as an academic, I thought it was really important, because I was preparing for a possible fall semester in which the majority of professors, teachers, educators, would be teaching online. And I just wanted to show, look. Here is a captioning app that’s easy to use. You don’t have an excuse not to use that. But that made, I think, complicated on my end, because in terms of, like in addition to juggling my own work schedule, I’m doing all this extra work. But the truth of the matter is, all I was really doing was researching. I was putting in the hours to research and dig up all this information about the new technology, the new apps that were being introduced. And I think if you really are committed to providing accessibility for your audience, then do the research. Do the work. Don’t always depend on disabled people to kind of do the legwork. Because quite frankly, we’re always doing the legwork anyway.
BRANDY: Yes, that’s true. And I think another point to be made here is, you know, I’m hopeful that books like yours, podcasts, other outreach might reach the ears of the companies. I’ve written to some of— You know, you could write to the companies as well. Why aren’t there easily usable apps on the applications that we’re already using? There’s a number of applications, services, podcasts. And so far, I haven’t come across any podcast protocols that automatically have captioning services. And it makes me wonder, why is that? Why would they assume that a podcast— I think it’s your example earlier. They just think, oh, they’re not in the audience. So, does it matter? When in fact, it does matter, and it ought to be something that’s designed when the applications themselves are being built.
JAIPREET: Yeah, it’s definitely a cultural thing here. I mean, there’s this idea that we design a piece of technology, and then we deal with accessibility after.
BRANDY: Mm.
JAIPREET: Accessibility’s always an afterthought. And that’s historically the problem here. And that’s what a lot of disability activists and design activists are forcing [inaudible]. I mean, my colleague, Sara Hendren, has a wonderful book out last week as well: What Can a Body Do?.
BRANDY: We interviewed her! [laughs] She’s great!
JAIPREET: Oh, yeah. It’s fantastic, yeah. And I think Sara is someone who’s constantly pushing the design discourse as well. And Liz Jackson is another person who has been arguing that designers really need to work with disabled people to think about how to put accessibility at the beginning of every s ingle design project rather than after, or as you mentioned, rather than testing on disabled people. So, including the expertise more and more, like making it an ordinary part of technological development or practice. You know, as in the case of podcasts, I think it would really set a new pattern, a new cultural shift going forward.
BRANDY: Mmhmm. I agree. And I wanna just return to something you said a minute ago about free labor and how often people like myself, I mean, you just don’t even think about the fact that you’re asking for free labor. And my question is, when we do want to bring disabled people into the design phase of these technologies, they’re often being brought in as free labor at that stage, too, aren’t they? How can we fix? You know, I wonder how necessary, it seems like the shift needs to be even bigger and broader. Because even at the stages when they’re asking people to be involved, are they paying them meaningfully? Are they actually asking them to be part of it in a way that treats them like equal producers of the technology? Or is it another one of those situations where cultural blindness makes you ask somebody to do the legwork for you without you really realizing that that’s what’s happened?
JAIPREET: Well, if you’re a big company, then I think there is the obligation for you to have a dedicated team devoted to accessibility, and that team needs to be made up of disabled people. I mean, I mentioned a few minutes ago about Twitter’s voice tweets. Well, it was also revealed that Twitter did have an accessibility team, but they’re mostly volunteers.
BRANDY: Mmhmm.
JAIPREET: But why are they volunteers in the first place? Why aren’t they, you know, it’s a huge company. They should be paying for an accessibility team to be devoted to this work. But again, it’s like you said, it’s kind of a problem here in that we don’t recognize disabled people’s expertise as being necessary or even crucial to the use and production of technology. And until that changes, I think we’re constantly gonna see this kind of tension and pushback.
BRANDY: Mmhmm. Yes. Well, and I think errors of social justice as well, where you’re taking advantage of people. We see this in academics all the time—
JAIPREET: Yes.
BRANDY: —where you see people who are high up, tenured and secure, taking advantage of the labor of graduate students or adjuncts and things like that. But it happens all across the board where you accidentally, frequently, take advantage of people’s labor. And you know, oh, it’ll be a good experience [laughing] for you, you know? Or don’t you wanna do this for the betterment of mankind? And that’s simply, yes, we often do want to better mankind, but that is not an appropriate way to address that. You would not ask for an engineer’s expertise by asking them, “Could you provide this free labor for me, please?”
JAIPREET: Mmhmm. Yes, exactly. I mean, again, one of the reasons why I spent my summer testing out captioning apps is that I have the expertise in this. But I also had a kind of stable job, and I didn’t really have to worry about any kind of financial issues. Where I know other people might not have that. So, yes. It was free labor on my part, but it was not something that I was going to be committed to doing forever.
BRANDY: Mmhmm.
JAIPREET: ‘Cause that’s not fair for me either. Yeah.
BRANDY: Mmhmm. And I just I think, you know, if there’s one thing I want to sort of drive home to our listeners is just how often we don’t see that labor all the time with issues of accessibility. I don’t. I’m being taught by other people to see it, but I wouldn’t see it on my own. And I so value books like yours and also Sara’s, but also just your perspectives. And I’m so glad that you can be part of this podcast and sharing with our listeners.
Is there anything you’d like to end with? And again, the book is Hearing Happiness: Deafness Cures in History. It came out with University of Chicago Press. Is there anything else you’d like to share or end the podcast with for our listeners today?
JAIPREET: No, I’m good. I mean, I think it’s really important for us to constantly be aware of where our social justice fits in, in the broader work we’re doing. And thinking about everything with accessibility in mind can actually be quite a radical movement. But I think that’s it. That’s all I have to add. And thank you, Brandy, for having me on the show today.
BRANDY: Oh, it’s so wonderful to have you. And again, I hope all of you will check out her book. And you can check out the pod, I’m sorry, the blog, which will have a link both to this podcast and to this transcript available. And once more, thank you all for being part of the conversation.