Fugitive Sensing with Michele Friedner

Is assistive technology truly expanding human flourishing—or does it force a narrowing of how we are allowed to sense and connect? In this episode, Eleanor Drage speaks with Michele Friedner, Professor in the Department of Comparative Human Development at the University of Chicago, about the politics of cochlear implant infrastructures, medical anthropology, and disability justice.

The conversation explores how the state and multinational corporations enforce a rigid project of "normalization" through cochlear implants, often transforming a child's sensory world into a lifetime of corporate tech dependency. Friedner examines the immense, unseen labor of families—particularly mothers—who face intense pressure to abandon intuitive, body-based communication like touch and gesture in favor of normatively acceptable spoken language.

Michele Friedner is a medical anthropologist and Full Professor in the Department of Comparative Human Development at the University of Chicago. Her research focuses on disability, technology, and sensory politics, with a specific focus on deaf communities internationally. As a deaf academic who uses cochlear implants herself, her groundbreaking work explores how political, economic, and technological infrastructures shape contemporary disability futures.

Reading List:

• Valuing Deaf Worlds in Urban India

• Deaf and Incarcerated in the U.S.

• The Obsolescence Issue

• Feminist, Queer, Crip

• Activist Affordances: How Disabled People Improvise More Habitable Worlds

Transcript:

Eleanor Drage (00:53) 

I am thrilled to be with you today. I am sitting here with Michele Friedner, who is a full professor in the Department of Comparative Human Development at the University of Chicago, and we are here to talk about her amazing book, Sensory Futures: Deafness and Cochlear Implant Infrastructures in India. This was recommended to me, and it suddenly jumped to the top of my list for Easter reading, which was not what I expected, but it was phenomenal. Thank you for this incredible book. First of all, can you tell us what you do and what brings you to the topics of feminism, justice, and technology?

Michele Friedner (01:32)

I'm a medical anthropologist who works with deaf and disabled people in India and internationally. I'm very interested in how medicine, technological life, social life, and religious life create opportunities and constraints for deaf and disabled people, and the kinds of disability futures they can imagine and create for themselves. My work has always been with deaf and disabled people as they navigate worlds that are often not of their own making, and as they work to build more inhabitable worlds for themselves.

Initially, when I started doing my work, I did not focus on technology at all because what I learned from my deaf interlocutors, and now my friends, in India and elsewhere, was that technology was not always important to them. This was also before the age of video calling and social media apps that allow for visual video connection. When I initially did my research from 2007 to 2015, people were primarily focused on Indian Sign Language and other sign languages. The point was to allow for more opportunities for people to learn and speak sign languages, so technology did not play much of a role.

However, when I went back to India in 2016, I learned about Indian government programs providing cochlear implants to children living below the poverty line. I became super interested in how cochlear implants were changing how we know, understand, and imagine deafness. I was really interested in what spending so much money and devoting so many resources to cochlear implants was doing for families, and what it meant for the state's expectations for deaf children. That's how I pivoted to focusing more on technology, specifically on cochlear implantation and the cochlear implant as a technological, sensory, social, political, and moral device.

Eleanor Drage (04:10) 

We are The Good Robot, and we'd love to hear your answers to our three "Good Robot" questions: What is good technology? What does it look like? How can we work towards it, and is it even possible? What do you think?

Michele Friedner (04:23)

Well, first of all, I love the title The Good Robot, because a lot of times people with cochlear implants will jokingly say, "I'm a cyborg," or "I'm a robot." I worked with a young woman who called herself a machine-wallah, a machine person. It's an awesome name.

For me, good technology is technology that enables human flourishing in its widest sense. It allows for a range of flourishing, and it foregrounds human connections with other humans as well as the non-human, the divine, and the interworldly. I see good technology as something expansive that facilitates interdependence, rather than resulting in complex dependencies on a corporation, intellectual property, or other entities.

Eleanor Drage (05:27) 

Let's go back to basics here and think about hearing. What is hearing to you, and why has it become so central to how we are taught to speak and listen?

Michele Friedner (05:39) 

This is a great question. I will not bore you with a lecture on acoustics or sound waves, but I will talk about the audiogram, which many deaf, hard-of-hearing, and hearing people are familiar with from getting a hearing test. You go into a sound booth, raise your hand when you hear certain sounds, and repeat words, often nonsense words and sentences. To me, the audiogram captures a normative understanding of hearing. People either pass or fail. If they fail, meaning they do not have normatively acceptable or desired forms of hearing, they are introduced to interventions like hearing aids or cochlear implants. These are designed to get people into the normative range of hearing, specifically with a focus on spoken language.

I'm very interested in how we think about hearing as a social, political, and economic practice, a process produced in deaf children and adults through the labor of families, audiologists, surgeons, schools, and therapists. I don't necessarily see the sense of hearing as a natural sense. In general, my work explores the ways all the senses are produced and maintained by a diversity of actors. They are inherently political, and there is a broader project focused on normative sensing and creating a normatively sensing person.

Eleanor Drage (07:37) 

As you've said, the book explores the how and why of cochlear implants; you really do some deep digging. Why is India pushing cochlear implants so hard as the best way of turning what is imagined to be "useless residual hearing", and you can explain what residual hearing is, into normatively accessible communication? All while stimulating the economy in the process, of course. Cochlear implants are great for business in India, as they are in many other places, I'm sure. Can you describe the project and your own personal experience going into it?

Michele Friedner (08:20) 

Sure. The project is really interested in how India, as a nation-state, sees its responsibilities to its citizens, specifically to deaf and disabled citizens. It has always been a place where deaf and disabled people received certain kinds of entitlements, such as hearing aids, pensions, walking canes, and other basic technologies. Then, in 2014, the state decided to focus on providing cochlear implants to children below the poverty line. They worked with the three multinational corporate manufacturers to procure devices at a more affordable price.

They saw it as a nationalist project: we are getting cochlear implants for a lower price, we are doing this for our citizens, and we are turning deaf and disabled citizens into productive, hearing citizens. The idea was that they would become independent, they would be able to work, they would no longer need Indian Sign Language, and they would be able to focus on listening and speaking using their residual hearing.

To clarify what I mean by that, most people are not born completely, fully deaf. They typically have "residual hearing", the standard technical term, which means a little bit of hearing left. Though that phrasing can carry ableist overtones, it refers to hearing that can be used in a productive sense. We rarely talk about people using residual hearing just to hear kids stomping downstairs, thunder, or birds chirping. We usually value residual hearing in the normative sense of listening, speaking, and having conversations. The big goal is being able to talk on the phone, because of the specific kinds of economic productivity bound up with that.

It was fascinating to think about how this became a state project and what it meant for deaf and disabled futures. When I talked with surgeons, bureaucrats, families, and teachers, people would often say, "Because these kids are implanted, they're now almost hearing. They're near-to-hearing, they're completely hearing." By implication, they would often add, "And they're normal now. They won't need accommodations in school; they'll be able to work, earn a livelihood, and be normatively successful."

This was very much a project of normalization. I am deeply interested in how normalization acts as a kind of narrowing, a narrowing of the sensorium to create a single, standard way to sense and engage. During my research, I would sit in auditory-verbal therapy sessions and watch therapists work with children. These children were taught not to use their hands while they talked, and they were often discouraged from looking at people's lips. Therapists would cover their mouths or find ways to hide them so the children would be forced to focus entirely on hearing through their ears and using that input to produce normatively intelligible speech.

This really is a project of narrowing because it forecloses other ways of relating that are tactile, visual, or olfactory. There are so many ways of connecting and being in the world that can involve all of our senses, not just listening.

Eleanor Drage (12:43) 

I want to talk about how tricky that kind of ethnographic work must have been, watching those emotions play out and being in the room while children are stopped from experiencing their parents and communication in certain ways. It was certainly tough to read in parts. But first, I want to get to the core of what you just said: one of the most important messages of this book is that society values a very particular way of using our senses. When we aren't encouraged to sense how we like, the focus shifts to making an individual sense in an "appropriate" way, rather than creating a world where we can sense with and through each other to facilitate communication. I was just out in the garden with my cat, and I loved watching him feel the wind in his whiskers and close his eyes. It's delicious. What is going wrong right now with how we're taught to sense?

Michele Friedner (13:36) 

Well, first, let me answer your earlier question about how I came to this research. I have two cochlear implants myself. I got them later in life after wearing hearing aids for most of my life. For me, this was a deeply personal project. When I got my implants, all of a sudden I could "hear" a lot better, and I no longer had to read lips as much. But I was doing a different kind of sensory labor with my implants, and I felt very ambivalent about them. That was the stance I brought to the research. I also felt concerned about what mass implantation meant for deaf futures, specifically for the futures that my deaf and hard-of-hearing friends want, which involves more sign language in the world.

The kind of normative sensing required by these programs prioritizes efficiency, sensing that can be easily subsumed into normative forms of education and work. In the process, it ignores the very real labor that people must perform to sense in that specific way. As humans, and as humans who coexist with non-humans in the world, there is a wide range of ways to be with people, animals, and objects. Ideally, we should be allowed to cultivate a sensorium in which all of those ways of being are valued and understood.

Eleanor Drage (16:00) 

I also want to briefly shout out the brilliant Asuka Ando, a scholar based in Tokyo who explores how and why Japanese Sign Language (JSL) is often not viewed as a real language in Japan. People will say, "Your Japanese is not good," but what they really mean is, "Your spoken Japanese is not good." They don't recognize JSL as a valid primary or second language for deaf communities. They just assume these individuals can't speak or communicate, when they are actually speaking a completely distinct language.

Michele Friedner (16:37) 

Exactly. When we think about engagement, interdependence, and the role of the senses, we have to ask: what does it mean to bring your full self to an interaction? How do we enable that full self to exist?

There were moments in those auditory-verbal therapy clinics where I saw children's eyes darting to the therapist's mouth, or saw them trying to use their hands. There were always these flashes where I felt things could be otherwise, more expansive, but they were not allowed to be. I found that really disturbing. I also saw mothers constantly being lectured that their natural ways of engaging with their children were wrong. The things they did instinctively through gesture, touch, and eye contact were dismissed. Mothers were taught to engage in a non-stop speaking project, narrating everything they did throughout the day in spoken language. It really made me think about all the other rich ways of relating that were being pushed into the background.

Eleanor Drage (18:04) 

Let's talk about the mothers, because really, it is mostly them, right? They are responsible not only for uprooting their families and making these enormous sacrifices, but they are also unable to work because they are spending so much of the day, as you say, chatting like cricket commentators with their kids. They are expected to be constantly speaking to their children and adhering to these incredibly strict guidelines.

It is heartrending. As you write, they are covering their mouths when they speak, refraining from snuggling with their children or communicating in other spontaneous ways, and even allowing their children to be taken away from them to live with grandparents or other people if the mothers are deaf themselves. There was so much sadness here, and the mothers are obviously trying so hard to do what they think is right.

I had loads of terrible allergies growing up, and my mum would take me anywhere. She would drive me halfway across the country to see some specialist she thought might help, and just wait out in the car. So, I've seen that kind of dedication firsthand. What kind of emotional story are you trying to document here?

Michele Friedner (19:15) 

The story I'm trying to tell is one of mothers who are working incredibly hard. It is a sad and problematic story because these mothers are not receiving all the information. We often talk about the importance of giving families, and, again, mothers, options and facts so they can make informed choices, but that is not what is happening here. Mothers are being told that this is the only option for their children: "If you want your child to listen and speak, this is it."

I think a lot about the importance of having deaf role models and having an idea of what a good deaf future can look like. I remember meeting with a group of mothers during my research, and they said, "Wow, you're the first deaf adult we've ever seen." I found that incredibly poignant. Where are the deaf role models and the deaf possibility models? There should be lots of different options for what it looks like to be a deaf person in the world.

For these mothers, I saw them working incredibly hard, doing domestic work and maintaining their households while also raising their children. And maintaining their child meant maintaining their child's sense of hearing. They have to take care of the device, which needs to be cleaned, charged, and kept operating. It was fascinating because mothers are literally instructed in how to take care of the device like a living thing: you bathe it, you clean it, you let it rest. In all of these ways, the device becomes akin to a child itself.

So they are taking care of the device, taking care of the child, and suddenly their child has multiple birthdays: they have their biological age, their hearing age, and their cochlear implant age. Their "hearing age" is the age at which they started wearing a hearing aid, and their "cochlear implant age" is when they started using the implant. On top of maintaining households, these mothers are taking their kids to therapy appointments and doing all the therapy exercises at home. A lot of mothers actually became professional therapists themselves, turning it into a career, while others would informally work with other children in the community.

After I wrote this book, I did some research in Pakistan, looking at cochlear implant infrastructures in Karachi. There, I met many mothers who were very eager to work with other people's children. Because Pakistan has fewer rehabilitation and auditory therapy resources, the mothers would step in to fill the gaps for other kids as well.

Eleanor Drage (22:20) 

You talked about the cleaning and the "bathing" of the cochlear implant as something that is not really advertised before you get one. There is this assumption that you get the implant and, bam, you can hear; the implant stays in forever, and that's it. In reality, it seems like the process is not very transparent; doctors only tell patients and mums about the massive amount of aftercare after the surgery is done.

That aftercare process is the literal infrastructure of cochlear implants that families are forever interwoven with, constantly having to get new batteries, which poses enormous problems going forward if there is an economic shortage. What are the post-implantation struggles, and why do we not talk about them?

Michele Friedner (23:10) 

It's interesting because after you are implanted, you have the surgery where the electrode array is wrapped around your cochlea, followed by a period of rest and healing. Then you go back to the clinic, the implant is activated, and the external processor is placed on the head. At that exact moment, you are handed a huge, gigantic, unwieldy kit full of spare parts: spare wires, batteries, cleaning tools, microphone covers, coils, magnets, and so on.

Families are rarely told about this kit beforehand. They receive it and are told they need to keep it safe, they are taught the endless work required to maintain it, and then they are told they need to start saving money for replacements. In India, the government program only provides care and support for about three years. After that, families are entirely on their own.

What is particularly interesting is that during those first three years, families are in a relationship with the state bureaucracy. But afterward, they have to work directly with the multinational cochlear implant manufacturers. These manufacturers will make certain processors obsolete at certain times. Families then have to save significant amounts of money to buy a compulsory upgrade, which is exactly what it's called, when a processor is phased out. Very often, families have to make heartbreaking decisions about whether to pay for food, school fees, or a new processor for their child.

This is the lifetime of care required for the device that families are only told about after the fact. I was talking with a journalist in India who noted, and I heard this a lot too, that companies love to use family rhetoric. They say, "Now you're a member of our family. You're a member of the Cochlear family, the MED-EL family, or the Advanced Bionics family." But in reality, families often feel like it is a hostage situation, or a marriage from which they can never get divorced.

Moving from India to Pakistan, I saw these incredibly complex global networks springing up to deal with this. Pakistani immigrants living in the US and Canada were shipping processors and parts that had been declared obsolete in the West over to Pakistan, because they were still being used there. It's the same in India. Processors that are considered obsolete in the US are still treated as the latest models in India. There is a whole shadow economy where people are buying, selling, and donating parts that are obsolete in one place but vital in another. It is a fascinating network to see, and it is incredible to witness the role that individual families play in keeping this infrastructure up and running.

Eleanor Drage (26:41) 

And supporting each other through this very real hardship, I guess. There is also a description in the book of a boy who wasn't able to play football because he didn't want to damage his new cochlear implant. I remembered the kids at school who had no braces, no orthodontics, no glasses, no faff at all, and I just thought, "Wow, can you imagine?" That is a whole different kind of existence. You have no worries. You can do a sleepover at someone's house without worrying about bringing along some kind of technology, without which you can't sleep, shouldn't sleep, or can't wake up in the morning. That kind of total freedom is a luxury. It gives you a sense of calm to not have to rely on all that extra stuff.

Michele Friedner (27:29) 

Exactly. There are two things I wanted to say to that. Often, what families are doing is trying to prevent their children from becoming isolated or left behind. They are engaged in this intensive process of keeping their children hearing, listening, and speaking because, without awareness of other options, they view this as the only way to keep the child integrated within the family. But, of course, there are other rich ways of being a member of a family.

The other thing I want to point out is that when these devices break, children go "off-air." That's how people talk about it; they are suddenly without sound. This process of being constantly turned on and off, on and off, can be extremely disruptive to a child's existing sensorium. It brings up profound questions for me regarding neuroethics, bioethics, and the importance of maintaining an intact sensorium, as well as the responsibilities that the state and corporations have to enable the maintenance of that sensorium.

Eleanor Drage (28:39) 

Beyond all this chaos and the hostage situation you describe, there are these beautiful examples in the book of parent-child communication that completely transcend linguistic and auditory communication. I was deeply touched by your description of mothers peeling sweet limes and giving slices to their children, smoothing down their hair, and generally using the language of care to communicate. It’s a language we often take for granted, especially between parents and children. You describe how some of the mothers you spent time with blew on their children’s hands, brought those hands to their own faces and necks to let them feel the vibrations of the sound, and animatedly discussed everyday life using gestures, imagery, and touch. Can kindness and love combat what seems to be a completely ableist failure of the imagination that attempts to restrict these kids to only one way of being?

Michele Friedner (29:40) 

I absolutely think that engaging in multi-sensory activities and embracing being multi-sensory beings together can combat that ableism. These moments where we see mothers and children working together are moments where they are truly sensing together. I'm not saying they are sensing in the exact same way, but they are connecting in an alternative way that isn't solely focused on listening and speaking. They are focusing on a much more expansive form of relationality.

To me, that is love, and that is care. It allows us to rethink interdependence and the kinds of intimacy that can exist entirely apart from, or alongside, these normative projects. It's found in the moments when mothers can break away from the rules and participate in what I describe as "fugitive forms of sensing", spaces where mothers and children can just be together as more expansive human beings.

Eleanor Drage (30:39) 

Michele, thank you so much for coming on the podcast to talk about this. It's been brilliant. Your work is phenomenal, and I hope to have you back again soon.

Michele Friedner (30:49) 

Well, thank you so much. It was wonderful to talk to you and thank you for reading the book with such care and kindness. I really appreciate that.