Bonus: Talking the history of deafness 'cures' with Jaipreet Virdi
Hosts: Anna Reser, Leila McNeill, and Rebecca Ortenberg
Guest: Dr. Jaipreet Virdi
Producer: Leila McNeill
Music: Falling asleep under a million stars by Springtide
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We talk with historian and author Dr. Jaipreet Virdi about the history of deafness cures and technologies for hearing loss. She is the author of the recently published book “Hearing Happiness: Deafness Cures in History” from Chicago University Press.
Show Notes
Hearing Happiness: Deafness Cures in History
Aimi Hamraie, website
Bess Williamson, website
Sara Hendren, website
Liz Jackson, website
Transcript
Transcription by Julia Pass
Rebecca: Welcome to this bonus episode of the Lady Science Podcast. I'm Rebecca Ortenberg, Lady Science's managing editor.
Leila: I'm Leila McNeill, one of the founders and editors in chief of Lady Science.
Anna: And I'm Anna Reser, the other founder and editor in chief of Lady Science.
Anna: We are very pleased today to be joined by Jaipreet Virdi, a historian of medicine, technology, and disability and assistant professor at the University of Delaware. She is the author of the new book Hearing Happiness: Deafness Cures in History published this week by the University of Chicago Press.
Anna: Hearing Happiness is a history of the endless quest for a cure for deafness and the ways medicine and technology have shaped the culture and perception of deafness in American society. The book is also a memoir, weaving history with an account of Dr. Virdi's own experience as a deaf woman. So Dr. Virdi, thank you so much for being here and welcome to the show.
J. Virdi: Thank you. I'm very happy to be here.
Anna: So I wanna begin with this idea of childhood because the book begins with a account of your own childhood. And I wanted to start with this idea of loss as a general concept because I think it permeates so much of the thinking about deafness as a medical convention and the motivation to find a cure for deafness.
Anna: So when people have talked about cures for deafness for children, now and in the past, how does this idea of loss—loss of hearing, loss of speech, of the chance at a so-called normal life—how does that idea shape this quest for a cure, the perception that deafness is something that should be cured at all?
J. Virdi: Oh, that's a great question. To begin, it's important to remember that the majority of deaf children who are born are born to hearing parents. So many parents might not actually be familiar with deaf culture or the challenges that come with raising a deaf child. So when a child is born and assessed to have a hearing loss, the advice that the parent usually receives comes from medical professionals and from other health professional experts. So this clearly shapes the way in which information about deafness is strictly shaped and controlled by medicalization.
J. Virdi: And I think this immediately puts forward this idea of deafness as a medical condition that needs to be fixed and that it needs to be treated, it needs to be cured. It needs to, in other words, fall under the same guise as any other disease that has a solution at the end. But with deafness there are other complications that could be challenging for hearing parents, especially with communication.
J. Virdi: So if a deaf child is born and has some kind of genetic deafness, then the challenge is of course the child has never actually heard sound. So this child is not going to feel any sense of loss. I think that's a really important point, actually, that a friend of mine who is [unclear 03:41] pointed out. You can't talk about deafness as a loss when we're talking about being born deaf because there was never any hearing to lose.
J. Virdi: Now this is a broader history of how we approach deafness as a medical condition and how [unclear 03:59] like newborn screening test or idea of standardized hearing and things like that, how they shape this conception of deafness as a condition to be fixed. That starts as early as infanthood. But going forward from that, parents feel the burden then to try to give their child the best chance at the normal life as they understand it, which means taking them to experts, special school, different treatment, different technologies, and then maybe language acquisition. Sign language somehow fits in there as well.
Leila: So your book often deals with a distinction between an adaptation and then a fix or a cure for disability. And this is something that applies to other differences as well beyond deafness and is the crux of a lot of disability activism. So I'm wondering if you could talk a little bit about how people in the past think of this distinction and where did power tend to lie in making decisions about what kinds of differences should be, quote-unquote, "fixed"?
J. Virdi: One of the things I struggled when I was initially writing Hearing Happiness was what kinda story I was going to tell here. Is it a story from a top-down model of medical improvement and advancement and technological progress or the story about how people responded to the cures that were pushed upon them? And my book ended up being kind of a merge of these two formats because what I really wanted to do was introduce this idea of disability as being cured and treated.
J. Virdi: We're at this end point that success is guaranteed when that disability is, quote-unquote, "fixed." But what I found interesting is the choices people made in learning how to interact with their built environment tells us a lot about how disabled people were trying to shape their bodies to the environment but also this expectation that the environment was supposed to make space for them. And my colleagues [unclear colleagues 06:15], and Sara Hendren all have these wonderful works out on disability and the built environment, the design.
J. Virdi: But when I incorporated some of the ideas in Hearing Happiness, I was thinking about how people I guess decided when to end the negotiation, when they decide to stop, perhaps, continuing to fix their disability or stop and just accept it. And there's no right or wrong answer in that because I think a lot of it has to do with the kind of agency that [unclear 06:53] people have over their own lives.
J. Virdi: So for example, looking at the archives at the American Medical Association, I was looking at all these letters from the early 20th century written by deaf people from all over the United States. I mean, they wrote to the AMA asking for insight and advice on whether this cure was proven to be effective, whether they could trust a physician, or whether they were fooling themselves in thinking a new patented medical cure would actually cure their deafness. And these letters are really revealing because they outline these self-contained patient histories.
J. Virdi: So these people are assessing their lives through the lens of their deafness—what worked, what didn't, what complications they had, what struggles they needed to deal with in order to feel like functioning, productive people. So there's a lotta power here, I think, in making that claim that you can live with your disability. And then I think more importantly you can make these kind of adaption yourself that don't always align with broader cultural expectation. So for example, somebody deciding to wear a bulky hearing aid rather than go and try the latest surgical technique for fixing their deafness.
Rebecca: Jumping off of that a little bit, you write about the idea of a cure itself is very unstable and that many of these cures and fixes that you mention learning about in the archives and today are really advertised as miracle cures.
Rebecca: So one example that people I think might be familiar with today is cochlear implants, which I think a lot of people in the popular imagination see as, quote-unquote, "curing" deafness but actually require extensive therapy and adjustments and can cause ongoing pain and come with enormous financial cost. And so could you talk a little bit about the difference between these popular perceptions of what these kinds of cures and technologies can do and the actual experiences of people who use them?
J. Virdi: Yeah. So one of the popular perception of any kind of what would be advertised as new hope for the deaf is that it's an immediate cure. You try this medical treatment, you take this patent medicine, or you wear this hearing aid or cochlear implant, and immediately your hearing is restored. You hear as normal. But that's obviously not necessarily the case.
J. Virdi: As you mentioned with more specifically with things like cochlear implants, there's a lot of extensive therapy. There's a lot of struggling, adjustment that comes with wearing with these cochlear implant and dealing with the new assimilation of sound that we never really recognized or perhaps even heard before. So this is not a contemporary phenomenon.
J. Virdi: In my research I've seen what I refer to in the book as the "switch-on factor." You try this cure, and then immediately your hearing is restored. This is something that I've seen repeatedly in the archive as early as the 19th century. And a lot of it has to do with the misconception of the struggles of trying to hear. I mean, it's not just like hearing with your ears. Your brain is part of the process, too, interpreting, making sense of where the sounds are coming from, having comprehension. All of that is part of the hearing experience.
J. Virdi: And when I see things like artificial eardrums, for example, marketed as a cure, again, there was this long-standing rhetoric in that the cure is instant. You put the tiny little device inside your ear. It works as a prosthetic, it repairs broken eardrum, and then you should have no problem with sound comprehension. And obviously that's not necessarily the case, which is why artificial eardrums haven't quite become a staple in technological devices for hearing loss.
J. Virdi: Now one of the things I also came across is the ways in which these cures were promoted and marketed to deaf people as well. So when hearing aids, for example, in the earlier 20th century started to become more technologically sophisticated, like the manufacturers were improving on the microphone and the receiver and the battery power, advertisers were releasing images of people wearing hearing aids as these happy, cheerful people and very stereotypical gender representation as well, where the hearing aid allowed the male to go get a job and be very successful businessman and the female who wore a hearing aid succeeds in her domestic life.
J. Virdi: But what's left out in a lot of the imagery is how many people struggle with the day-to-day life of actually wearing these hearing aids. And the body pack hearing aids, which we refer to as mono packs because they often came in either one pack or sometimes with a separate battery, they were heavy. And wearing that strapped on your body does cause frustration and complication all day long. I mean, it's the literal weight of struggling to hear.
J. Virdi: And on top of that, the actual process of wearing this and interacting with your life can also be complicated as well because the wire would wear out or it would interfere with your clothing. So the clothing would rub against the wire and the microphone, creating this kind of static. The battery didn't last very long. So deaf people often made their own adjustment. So they designed special packs for them to carry their hearing aids on, or they struggled with changing the wire. Or sometimes they even took apart the hearing aid and improved the engineering feature [unclear 13:10].
J. Virdi: So the image of wearing this hearing aid and immediately being able to hear again was not actually the same experience that deaf people experienced when they were wearing these hearing aids. Was a much more complicated, much more difficult process of trying to align their body with this device that they were putting on themselves.
Leila: One of the things I was thinking about while you were talking about how people see someone start to have their hearing automatically restored and that's in these images and advertising. And I'm wondering if you've seen any difference in the age of social media where you can easily share these inspiration porn type of videos. I've seen several of children who have never had hearing, and then they get these implants, and they're filming it. And the child can hear for the first time, and then everyone starts crying. And then that's the end of the video. And I'm just wondering has that changed at all how people perceive cures for deafness, or is it just another iteration of what you've seen in the archives?
J. Virdi: Oh, it's just another 21st-century version of the same old thing. I mean, [unclear 14:34] again, that's the little switch-on factor, this drama of being in the audiologist's office, putting the implant or their hearing aid on a young child, and then turning it on. And then there was this [unclear 14:48] of sound. Then it's so emotional. It's so moving that you can't help but cry.
J. Virdi: But how many times have these switch-on resulted in failure or in difficulties or in the struggles? We don't really know. We don't know anything beyond that [unclear 15:07] moment when the switch is turned on. We're never really told the financial struggle, the burden that come with training or with trying to figure out new aspects of communication with these hearing aids or going to another specialist and things like that. There's a whole complicated process that we don't really see at the end of that switch-on feature in these videos.
J. Virdi: And I think that leaves out a lot of the actuality of living with a hearing loss and being forced upon these technologies. But it also shows that the idea, again, of deafness being an instant fix with technology or medicine. It's another long line of history that has never really changed.
Anna: Yeah. I was gonna say that I listened in on a worldbuilding panel at a science fiction convention recently that was all about disability, and they talked a lot about if we were able to build mech suits for people who use wheelchairs so that they can walk, would we do that? And everyone was like, "Well, we could just not have stairs in the future. That would be good, too."
Anna: But one of the things they also talked about is this idea of a technological fix and who is actually pulling the strings or is in control of that. And you talk about this in your book, too, that when you switched to a different type of hearing aid, it wasn't something you were able to adjust yourself anymore. And so you lost a certain amount of control over the technology.
Anna: And for things like cochlear implants, some of them you can't change the settings on them at all without either going in for an adjustment or sometimes not at all because there's proprietary IP in the software that runs them or things like that. This idea that these technologies are not only an instant fix but also are going to provide you with complete independence and autonomy is not true, either.
J. Virdi: Yeah. Definitely. I mean, again, there is this assumption that the new [unclear 17:21] technology is always better than the last and this idea of technological progress advancing us toward a more, I guess, advanced future. But as I talk about in the case of digital hearing aids, one thing that's not always discussed, I think, in the audiologist's office or even in media is digital hearing aids have a shelf life. My analog hearing aid that I had prior to digital hearing aids, they lasted me for 12 years. I mean, they could have kept lasting if there was people, experts who were able to do the repair.
J. Virdi: But in the new digital age, there is no need for repair. You just toss it away and get a new one. But these are $8,000 hearing aids. Not a people have $8,000 just to replace hearing aids every three years no matter what funding you get for it. That's just ridiculous amount of money. And why aren't we making these things to be built to last?
J. Virdi: And I think my colleagues Lee Vinsel and Andrew Russell, they also have a great book coming out this week, The Innovation Delusion, where they talk about how our relationship with maintenance and technology have changed. And their work really influences the way I think about hearing aids because so much of the 20th century was about improving the engineering and technological features of hearing aids to make them more sustainable for deaf people who were actually writing to these hearing aid companies with their advice and with their input on how to improve certain things like clothing rub, for example, or adjusting the battery pack so that the weight was evenly distributed when they're wearing it.
J. Virdi: But now we have this idea that there are engineering and technological innovators who design these devices, supposedly for better sound interface. But in my own experience and doing the research on this, I have learned that many digital hearing aids, for that matter, also don't target the wide spectrum of hearing loss. So it usually targets the partially deaf or moderate hearing loss rather than the more severe hearing loss because the idea was that those who have more severe types of hearing loss, well, they can just get fitted for cochlear implants.
J. Virdi: And in fact, that was actually an advice that my own audiologist said to me, and I've been with that firm for 25 years. And he's like, "Okay, well, your options for digital hearing is very limited. Have you thought about having cochlear implants?" And I'm like, "This is my choice now? Brain surgery or an insufficient hearing aid? What happened to the choices I had for the past 25 years?" So, I mean, I think it's remarkable because when we talk about technological progress, the experiences of people are often left behind here, I think.
Rebecca: Yeah. Yeah. I'm definitely really struck by, in so many of these stories, whether it's the cost or just the idea that wearing the battery pack would take a certain amount of work and effort. And it's just so clear that in these cases, it seems like where the creation of the technology comes first and the process of figuring out how someone actually uses the technology is an afterthought.
Rebecca: And that's true in many instances. A much smaller but still annoying example was the whole thing of a new iPhone came out, and it wouldn't fit in your pocket anymore because it was enormous.
J. Virdi: [Unclear 21:15].
Rebecca: And it's one of those weird things where, yeah, engineers get obsessed with making the technology cool and then don't think about how the technology will be used by humans in the world.
J. Virdi: Yeah. Exactly. And there is this new shift, I think, in promoting all these prototype hearing aids that look like ear gauges or hidden in glasses or look like earrings. And I'm like, "This isn't a new idea." We've seen variation of this in the 20th century when hearing aids were being designed to be hidden, literally hidden on the ear, by resembling some other kind of object.
J. Virdi: So this idea like, "Oh, look, there's this cool new technology for the people that don't look like hearing aids." And my response is always like, "Well, what's wrong with actually wearing a hearing aid? Why don't you just improve the hearing aid technology rather than trying to hide it repeatedly?"
Anna: The description in the book of the hearing trumpets that would be festooned with lace and trim and stuff. If you were holding it against your body when you weren't using it, it would blend in with your dress. I love that.
J. Virdi: Yeah. Yeah. There was 19th-century ear trumpet that was painted black and had all this black lace 'cause the idea was marketed for women who recently became widowed, and they would be in mourning as per Victorian style. So they would just pick up the ear trumpet, and when they weren't wearing it, they'd just put it on their lap. And the fabric and lace of their dresses would disguise the ear trumpet.
J. Virdi: But I think an alternative way of looking at this is also that fashionable women wanted their ear trumpet, possibly their most intimate possession, to match their fashion style, right? Like the way we might, I don't know, change our watchband to a different color to match with our outfit.
J. Virdi: I think that's another way of thinking about it, too, because we have to remember that no matter how hearing aids and mechanical ear trumpets were marketed, people still had choices in how they were selecting these devices. They decided which trumpet they wanted, sometimes with the advice of the seller, but they tend to pick things that best resembled the kind of identity that they were trying to project. So I like to imagine the ear trumpet with the black lace on it wasn't always about hiding, but it was also about claiming the deafness at the same time.
Anna: I love that. That leads us into segue for a discussion of deaf culture. And the book has a, I think, a really nice compact explanation of capital-D Deaf culture. Be helpful, I think, for people who are new to that subject. Could you give us just a quick rundown of what you mean by Deaf culture and how this culture crystallizes around American Sign Language and how culture has shaped and interacted with cures for deafness in the past and in—
J. Virdi: Certainly. I do want to point out that this book is not strictly about Deafness with a capital D, but that doesn't mean that Deaf with a capital D people don't configure in the story. Of course they do. They are part of the history of deafness cure. And where sign language fits in is part of this broader idea about negotiating for a cure, negotiations that were done by families and deaf individuals and also experts about what's the best [unclear 25:03], I think, for them to live as a deaf person.
J. Virdi: So Deaf culture, as I'm sure many of you know, is this connection to sign language and a community that rejects this idea of deafness as being a disabling condition that requires a medical fix. So it's an assertion of autonomy over their own identity. But there are many deaf people, like myself, who don't nicely fit in with the Deaf community as it's promoted because we're not proponents of sign language, but we have the same kind of attitudes about community and autonomy.
J. Virdi: Then there is this general assumption that there is a separation of, I guess, population groups who have hearing loss. On one hand, you have Deaf with a capital D. You have that community that relies on sign language and reject all kind of medical and technological intervention. And then you have the group who might be classified or identified as the hard of hearing, who view themself as having a disability but otherwise still, quote-unquote, "normal people" who are part of the hearing community. And my books argue that this is not a very black and white approach.
J. Virdi: Hearing loss is a spectrum. A spectrum of audiological differences but also of identity. So lemme give you one example. A lot of Deaf schools publish their periodical that were printed by the students in the school. And these periodicals were newsletters that the pupils would send home or circulate amongst their family members or their actual community.
J. Virdi: And many of these periodicals included editorials or investigative reports about some event or some idea or some technology relating to Deaf culture. If we look closely in these periodicals, a lot of them actually have questions or reports about the latest technological or medical deafness cure fad. I mean, they investigated. They discussed the possibility, whether it would be helpful for the Deaf community, and they discussed the pros and cons.
J. Virdi: And there are some instances in which Deaf with a capital D people have said, "Well, I'm just gonna try this cure. I mean, I know I know sign language. I know I'm part of this community. But I wanna try this cure." I think looking at this spectrum of identities and experiences give us a more deeper understanding of where deafness cures fits in this history and that it doesn't always fall into this split boundaries between the two ideas about deafness being either Deaf culture where it's sign language or the hard of hearing who reject any of the [unclear 28:04] with deafness.
Leila: So I want to come back to this ear trumpet before we end. And I really loved your account of you trying out an ear trumpet for the first time, and you're pleading with the curator to let you do it. So before we end I wanted to ask if there was a particular cure or a patent medicine or an especially outrageous bit of quackery you encountered in your research that you really enjoyed learning more about.
J. Virdi: I mean, I'm glad you enjoyed that piece about me trying out the ear trumpet, too. When I'm writing this thing, it's like, "Okay, do I actually include this story?" But I'm so glad I did because one of the things I wanted to do with that particular passage is show just how much we can learn from material culture because most of our impression is about ear trumpets are in two-dimensional images or other secondary reports.
J. Virdi: But actually trying them and putting myself possibly in the position of the person who used it and learning how it worked. And then obviously the whole point of begging the creator to try me out. I think it's very revealing of the historical process. Us historians aren't always working the archives, finding materials. Sometimes we're actually engaging with the material as well. I'm glad you enjoyed that.
J. Virdi: But in terms of your question about outrageous bit of quackery, the one I think that shocked me the most was really the flying cures for deafness. These airplanes cures that became a really popular fad in the 1920s and 1930s because I thought they were just rare occurrences, just individual who was a risk-taker, a daredevil who went up on the plane and then learned through trial and error that this was an effective deafness cure. But the more I dug into the story, the more it became clear that it was a literal fad that was popularized in newspapers and periodicals.
J. Virdi: I mean, people were really discussing the benefits of this. And then you have people trying it out. And some were successful, some didn't get any result, and many died from plane crashes. And that still didn't stop people from trying it. And it's just this remarkable idea. It's like, "What other length are we going to go to to commit ourself to this idea of a deafness cure?" Including putting babies on a plane and having them go up in the air and this dangerous stunt of loops and dive and things like that. Yeah.
Leila: I want to thank you, Dr. Virdi, for talking with us about your book and sharing some more of your finds in the archives with us today. Everyone listening, you should check out her book, Hearing Happiness, which is now out, so you can buy it.
Rebecca: Yeah. This was fabulous.
J. Virdi: Thank you again for having me here on Lady Science.
Leila: If you liked our episode today, leave us a rating and a review on Apple Podcasts so that new listeners can find us. If you have questions about any of the topics we discussed, tweet us at @ladyxscience or #ladyscipod. For show notes, episode transcripts, to sign up for a monthly newsletter, read articles and essays, pitch us an idea, and more, visit ladyscience.com.
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Image credit: Two Victorian ear trumpets, one made of tin made by Atkinson, Union Court, Holborn, London, and the other swathed in black silk and lace mourning (Wellcome Collection | CC BY 4.0)
