Public Thinker: Jaipreet Virdi on Disability History & Deaf Futures

“Disabled people have long made their own hacks.”
Photo of Jaipreet Virdi, a smiling South Asian woman with long hair. She is in an office, standing in front of a wall of bookshelves filled with books. She is wearing a lilac blazer and white blouse, and holding a conversation tube, with one end inserted in her ear, the other directed towards the viewer.

Jaipreet Virdi is an associate professor in the Department of History at the University of Delaware. Her work is both richly researched and deeply personal—an uncommon blend in the academy, perhaps more so in history fields. While some reviewers have praised this as a methodological achievement, method to me doesn’t seem to capture a full appreciation of what’s happening in Virdi’s work. In narratives that weave together archive and experience, design and use, medicine and bodies, she brings to the fore the ways in which our language to describe abled-ness is inextricably connected with both the design and implementation of technologies aimed at providing cures, as well as our personal and social presumptions of its success or failure. Our conversation explored these histories of deafness, the technologies designed to overcome the associated medical and social impacts of that concept, and what “cure” can really mean when the technology that enables it can suddenly go away. Virdi’s Hearing Happiness: Deafness Cures in History (Chicago University Press) will be published in paperback this November.

Jody Roberts (JR): I’d like to start with asking about how you have come to explore what you explore, ask the questions that you ask, and doing so in the style that you’ve adopted?


Jaipreet Virdi (JV): One aspect of how I approach research questions in my work is very rigidly inspired by disability studies and disability history more specifically: how we center the lived experiences of people in that narrative that we write.

This requires building both a top-down and a bottom-up history. From the top down, we see where an individual is within the broader network of society and how they intersect with medical changes and technological developments. From this perspective, we try to determine how an individual reacts to these large-scale developments. In contrast, when we examine these histories from the perspective of the people—or in some cases, from a single person—then we can gain insights into how people were moving within, and not just across, the more sweeping history of society, culture, medicine, technology, etc.

As someone who’s trained in the history of technology and medicine, I want to pay attention to the broader trends in, say, technological development or medical practice. But from disabilities history, I embrace the need to understand where one stands through lived experiences.


JR: How did you put this approach into practice?


JV: When I started working on the history of medical cures for hearing loss, which was the topic of my doctoral dissertation, I was grappling with this question: How were cures for deafness defined and how was deafness classified as a specific type of ear disease within the broader diseases or categories of hearing loss that were being constructed over the course of the 19th century? As I was working on this project, the materials I was examining kept showing that in many cases the ways in which medical practice understood deafness was very much influenced by the culture beliefs of both the medical practitioner and the people being treated.

But when it came to the question of cure—what does a cure mean for deaf people?—it became more complicated. The historical literature would have you conclude that deaf people had no choice but to accept the cure that was being pushed on (or even sometimes against) them. But that conclusion didn’t reconcile with my experiences as a deaf person and definitely did not reconcile with what I was seeing in the archives.


JR: It sounds like you’re saying there was a disconnect between what has become our understanding of the history of medicine as it relates to deafness based on an approach that has come to define the relationship between the medical practitioner and the “patient” in a very specific way, and what the archival evidence was actually indicating to you. And that this disconnect was evident to you, at least in part, because it didn’t square with your own lived experience as an individual who has experienced both being deaf and someone who has been presented with possible cures.


JV: So this is a very important question: How did deaf people understand or negotiate with medical practitioners about cures? I realized that we were used to asking questions about how certain aspects of medicine, like “cure,” might be understood by the practitioners. But that wasn’t enough. What did “cure” mean for deaf people, more specifically? That became the starting point of what is now Hearing Happiness.

To me the bigger issue was not so much a history of medical cures and technologies that were offered to deaf people and how deaf people resisted them. Instead, we needed to flip the narrative and ask: How do we understand these medical and technological developments when they’re perceived through the deaf perspective?


JR: Is there a deficit of language around words like “cure”? I’m wondering how your work might allow us to see the incompleteness of both the medical and social models of disability, rather than one as a substitute for the other?


JV: There are plenty of disability studies scholars who argue that we can no longer accept a binary between the medical and social model, because the binary itself is the problem. For instance, in many cases, people aren’t aware of their disability or able to obtain proper healthcare—especially when it’s a disability that’s invisible or hidden—until or unless they get a medical diagnosis, if at all. The diagnosis and the treatment or technology that follows aim to “fix” the disability in terms of a social reality that a person hopes to inhabit—not necessarily the disability itself. We can’t actually have a strict binary here. It’s neither accurate nor useful.

What the models can do is allow us to understand the structural inequalities that are in place for how disability is managed and what the expectations of cure are. Because one person with disease A who lives with a disability might want to be cured and might want people to perceive them as a “patient” and yet, another person with the same disease as A who also has the same symptom might not necessarily want to have anything to do with the medical profession. Rather, they might want to disguise or avoid their disability. There are varied ways of how people experience their disability and experience their chronic illnesses, etc.

The problem with the medical model has always been this push for a cure. Even so, my understanding of disability history is that some disabled people want the cure; we can’t completely discount what the medical model offers.


No Cure

By Hannah Zeavin


JR: Can you talk more about the idea of wanting, or not, a cure?


JV: I was very much influenced by my friend Bharat Venkat, who just had a book come out a few months ago called At the Limits of Cure. It’s a beautiful book. I can’t recommend it enough. He takes an ethno-autobiographical/anthropological, medical-anthropological perspective of tuberculosis in India, and there’s a really beautiful line in the book when Bharat asks, “What happens when cures instead come and go, when you can be cured and then cured again?”

Because when we say the word “cure,” we presume there’s an end: an end to suffering, to disability. Suddenly, with the cure, you are restored to a wholeness or a sense of self.

But as Venkat shows, with the case of tuberculosis, it’s never really cured. Symptoms come back or you have other complications from the disease. So where is cure in this?

After reading this, I thought: It’s the same thing with deafness. People presume when you have your fix, you are cured: whether it’s a hearing aid or especially with getting a cochlear implant. But I’m only hearing as long as I wear my hearing aid; once I take it off, I’m deaf again. I’m completely deaf, I hear nothing. So how can I be cured when the cure is temporary? Cure exists only in passing for me, it’s only dependent on whether or not I wear the hearing aid.

What would happen, for instance, if my hearing aid completely breaks and I have no way of repairing it? I would never hear a sound again. Does the cure reverse itself?


JR: I really love the way you described that: the cure is encased in the mediation of some other object, and so it’s transient. And it’s hard to find which is the problem: the language or the technological gap that we’re assuming that the technology fulfills.

We have this experience very frequently with my daughter, who uses an eye-gaze communication device. And when the batteries run out, or the software won’t load because it needs to run an update, then she’s rendered mute. For an indefinite period of time, there is a boundary that is being crossed.

Can you share more about this relationship between language and technology, both of which reflect social commitments and expectations? How does this relationship play out in the realms of disability?


JV: There’s an understanding that we’ve progressed over time, that technology gets better and better. That, as technology evolves, we eradicate any social differences. But, of course, we know that’s not necessarily true. Technologies are not apart from the politics that are imbedded in them.

Just look at the recent history: over the course of the 20th century, the engineering aspect of electric hearing aids became more sophisticated. By the Second World War, the vacuum tube as foundational technology was replaced by the transistor. Then, you have the printed circuit and button battery, which allowed electric hearing aids to become smaller and smaller: Small enough that they went from being essentially briefcase size to being worn behind, and then in, the ear.

But what’s interesting—as this history relates to your question—is that as these devices develop, there’s a presumption that, with this evolution, the stigmatization of deafness started to disappear. That we’ve become more accepting of deafness and hearing loss in society. But what I uncovered in the archives is that this story, that technological progress yields social acceptance of the disability, is simply not true on just about every level.


Design with Disability

By Mara Mills et al.


JR: Let me pause there for just a moment so that we can lay all of this out for readers. The working hypothesis generally in our society is that the technology—in this case hearing aids—will continue to improve—to progress—in a linear fashion. For hearing aids, this meant that they would become both better hearing devices and smaller, more invisible. The second element of your story is that this unfettered progress in the technology, especially its invisibility, will make the experience of deafness more acceptable. Deafness will be less visible and the individual using the device will be, seemingly, less deaf. Do I have that right?


JV: Yes, so first, let’s explore the technology. As the archives make clear, there was no linear development of hearing aid technology: instead, there were a bunch of fits and starts, and in some cases going back and forth, where technologies that had disappeared 20 years ago suddenly came back again.

As early as the 1920s, hearing aid companies started to grow and started to offer more reliable devices for the consumer. And hearing aid companies were doing essentially well. The technology itself wasn’t that great, by today’s standards, but for the time it was as good as it could get. The idea of wearing an electric hearing aid was slowly becoming acceptable in society. But the companies weren’t just selling a hearing technology—they were actively selling the idea of a cure with the explicit outcome of helping a deaf individual better assimilate into hearing society. So as these companies grew and fought for market share, it wasn’t enough for them to offer these technologically superior electric devices. They also had to offer cures.

They had this whole business model where if a customer was unhappy with a hearing aid, then they could offer all these extras—essentially these electrical therapy gadgets that would have been branded as fake or quack cures in other contexts. And the hearing aid companies were offering them here as this add-on option for hearing aids. Which is pretty interesting, because what’s the point of that? Especially when you’re on the one hand saying the hearing aid itself is the cure, but then you’re offering these other “cure” gadgets.

This shows, again, that this idea of cure is so deeply embedded in society that the idea of wearing a hearing aid and making it visible as a way to demonstrate that you need some assistance means that the technology still wasn’t acceptable. What is really acceptable, instead, is this hidden sublayer of ableism: that you have to cure yourself.

We see this in the late 20th century–early 21st century with the cochlear implant, which is presented as an ultimate cure for deafness. When a person gets fitted for a cochlear implant, the process that follows is what I call the “switch-on factor”: the implant is activated and the deaf person is expected to be magically cured the moment they hear sounds. We see this in viral hearing-for-the-first-time videos. None of these videos show us what happens after the switch-on. Nothing about the struggle of adjusting to the world of sounds, nothing about the mounting expenses, or even the fact that the deaf person will still require speech therapy or even sound awareness to obtain maximum benefits from the cochlear implant.

In fact, I know so many people who got fitted for cochlear implant who, only a few years later, decided they can’t take it anymore. They’d rather just be deaf with a capital “D” and rely on sign language. But the assumption, then as now, is that cochlear implants are a miracle cure.

But what if there doesn’t need to be such a cure? In the relationship between deafness and technology, for instance, there is this rhetoric of invisibility. This rhetoric never allows deafness to be framed or accepted as something that is just bodily difference. We can accept eyeglasses in all guises. We can accept prosthetic limbs to some extent. But we still cannot accept hearing aids on a cultural level, especially for younger people, even though we wear similar-looking devices to listen to music.

JR: So I was going to ask you if you could comment more about that inequality within different disabilities—that some of our inabilities need to be cured and others do not.


JV: These cures had less to do with restoring a sensory loss and more with engaging in conversation, because that’s what deafness really is. It’s a barrier to conversation. It’s a barrier to full participation in a hearing society.

In many cases, you don’t really know a person is deaf unless you try to have a conversation with them or you call them out and they don’t hear or you watch them communicating in sign language. There is some social dimension here with deafness that is so deeply embedded in how we think about medical cure and how we think about the benefit of technology. Cures don’t just provide a deaf person the ability to hear sound. Apparently they also possess powers for allowing deaf people a way to integrate into hearing society and essentially become fully self-sufficient and functioning citizens.


JR: Another key tension you explore in your work is around visibility and invisibility. Or, in the case of the disability aids, maybe we call it a tension between discretion and hyper visibility. This is a debate within design as much as it is a debate within social norms. In my reading of your work, you seem to be arguing for another nondualistic approach to this tension, and I’m wondering if this is something we could discuss?


JV: I have a collection of these 20th-century hearing aids that I have been buying from eBay or from antique stores as a way to understand the materiality of these devices, because when you work with technology, sometimes just looking at images or photographs doesn’t always reveal the full breadth of the device. You need to hold it in your hand.

What I discovered is that many of these 20th-century electric hearing aids were beautifully made, in varied patterns, color, and style. But when we look at the marketing material in advertisements, they’re always advising consumers to hide them. And my thinking is, well, this is such a beautiful piece of technology, why would I want to hide it? And I then started to think, what if we started examining these devices differently? How do we draw attention to our technology?

So, case in point, we show off phones with personalized cases. We draw attention to our glasses by selecting the most fashionable style that fits who we are as an individual. But the same doesn’t always seem to be reflected in hearing aid technology.

But it used to be. It used to be that style and fashion were very much a part of the design of hearing aids and the accompanying technological benefits. And even now, when hearing aids are designed, they’re still very subtle, they’re still very medicalized. But you can buy add-on options to change their look—to find ways to accommodate your own personal identity or your brand.

What I’ve also uncovered is there are some disabled people who purposely use technology—a specific technology, prosthetic technology, to draw attention to their disability. They want to be recognized as disabled people. And I call this the disabled gaze. It acts in opposition to the medical gaze.

With the disabled gaze, it is about autonomy, taking control over your own image, over your own body and how you use technology to assert your disability, rather than to conceal it.


JR: It’s such an interesting moment for us to have the ability, the potential, to be doing more specialized, personalized manufacturing to allow for that choice. But we don’t have an infrastructure, a medical infrastructure, that always allows for that engagement.


JV: Absolutely. One of the things I did to draw attention to these trends was to tweet about Lady Gaga wearing what looked like an earpiece, actually an ear receiver, so she could hear her music while she performed at Biden’s inauguration. And it was so beautiful: it was gold, had this little leaf on it. And I tweeted about it. I asked why we can’t make hearing aids like that.

The tweet got a lot of attention. And there was this group of people who said, “I would love that, I would love to have options, not add-ons but actually incorporated into the design—such that you take it out of the box and this is how a hearing aid should look. And why can’t we add rhinestones, or change the color, why don’t we have agency in choice—and that includes financial choice? We shouldn’t be constrained and denied because we want something that fits our personality.” But then there are also people who said, “I like my hearing aid being discrete; I don’t like revealing it. Or my hair is too short, I don’t really think this fits my personality.” And that’s absolutely fine too.

And that, essentially, is the point: Why can’t we have options? Or why are the options for having this beautifully designed piece of technology always the most unaffordable, or always for the 1 percent or elite people who can afford it? It’s not always covered by insurance, it’s not always as easy as getting it from a hearing aid dealer; you have go through different channels to special-order it.

That tells us a lot about how we think about technology as well, including the ways in which we perceive how technology is used to cure your body, or how it’s defined as “assistive” versus “prosthetic.” These technologies don’t just restore a sense; they also integrate people into society, whether it’s by listening or again by lip-reading or sign language, etc.


JR: It seems you’re saying that we have implied understandings—expectations—in the design for how the technology operated to provide these dual roles—of “fixing” the deficit and of providing an opportunity to integrate into society. But in both cases, the assumptions of that design do not reflect the personal experience—the role that the individual wants the technology to play and how they imagine what integration can look like.


JV: Eyeglasses do that too, but, in contrast, eyeglasses provide opportunities for that sort of agency to emerge. The wearer can decide how they want the technology to feature in their integration into their chosen social setting.

But eyeglasses have also developed a very different set of cultural associations. There’s not a strong sense of disabling identity when it comes to eyeglasses as there is with hearing aids. In some contexts, we’ve come to associate eyeglasses with being intellectually superior in some cases, or being a nerd. But we consider deafness to be dumb or associated with old age.


JR: Before the pandemic, when we first spoke, you were starting to work on a project about local histories of disability. I wanted to hear more about why that felt important—to help demonstrate the local histories for communities of how disability has played out in ways that they’re probably very unaware of.


JV: Disabled people have long made their own hacks. They’ve long adopted ordinary household objects and technologies to prepare for their experiences. This can be something as simple as putting four straws together to get a really long straw because you can’t hold a cup, or a grabbing stick. There’s a really rich history of such disability hacks.

What I found is that they’re not always kept in archives or museum collections because they’re not perceived as being valuable enough. What I was doing was creating a digital collection called Objects of Disability. Prior to the pandemic, I was collaborating with museums to see what items they had in their collections that related in some way to disability.

And it’s not always as obvious as a wheelchair or a hearing aid or glasses or a cane. Sometimes it’s something like a toy telephone that parents made for their deaf daughter. Or a cup that was used to feed someone who was on bed rest or an invalid. I look at these kinds of low-level technologies or objects of disability, and what I find fascinating is that these objects also reveal a really rich local history of people making their own things.

This is a really important and underutilized history of ordinary things. But these ordinary things provide us so much historical context, including a deeper insight into how exactly people were living with their disabilities.

There’s even one museum that took over a historic house and they cut their doorframe, a very narrow doorframe from a house from around the 1870s. And the reason they kept the doorframe was because the person who lived there modified his wheelchair so he could maneuver it on his own. But the house, of course, was restricted, so the doorframe had all these marks on it from the wheelchair when he banged against it.

And I love that. I just think, go for it. We gotta keep the doorframe.


This article was commissioned by B. R. Cohenicon

Featured image: Photograph of Jaipreet Virdi by Evan Krape.