All Ears at Child's Voice Podcast

On episode 20 of All Ears at Child’s Voice: A Hearing Loss Podcast, Tatum and Wendy are joined by Dr. Michele Friedner from The University of Chicago. Michele is a social and medical anthropologist and works as an Assistant Professor in the Department of Comparative Human Development at The University of Chicago. She has a bachelor’s degree in religious studies from Brown University and received a master’s degree in anthropology from UC Berkeley and her PdD from the joint medical anthropology program at the University of California at Berkeley and San Francisco. Michele has written a variety of publications, including books, book chapters, and articles focused on hearing loss, deafness, and disability with a special focus on the deaf population in India.

The topic for this episode is a little different from the topics previously covered on All Ears at Child’s Voice. On today’s episode, Tatum and Wendy talk to Dr. Friedner about the language professionals and families use when describing hearing loss, hearing technology, and disability and how that language represents as well as shapes the identities of children with hearing loss and children who use cochlear implants.

Resources 

  • During our conversation, Michele referred to the book Deaf Gain, Raising the Stakes of Human Diversity edited by H-Dirksen L. Bauman and Joseph J. Murray.
  • Michele also referenced the documentary, The Listening Project, directed by Irene Taylor Brodsky & Jane Madell. 

Where to Find Dr. Michele Friedner

Where to Find Us

  • Follow Child’s Voice on Facebook, Twitter, & Instagram: @childs_voice
  • Follow Wendy & Tatum on social media: @WendyDetersSLP, @TatumFritzSLP

Special thanks to John McCortney & Michael McCortney for their work recording All Ears at Child’s Voice episodes. Episodes of All Ears at Child’s Voice are graciously edited by John McCortney.

Disclaimer: Child’s Voice is a listening-and-spoken-language program for children with hearing loss. All Ears at Child’s Voice: A Hearing Loss Podcast is a resource provided by Child’s Voice. Reference to any specific product or entity does not constitute an endorsement or recommendation by Child’s Voice. The views expressed by guests are their own and their appearance on the program does not imply an endorsement of them or any entity they represent. Views and opinions expressed by Child’s Voice employees are those of the employees and do not necessarily reflect the view of Child’s Voice. 

Episode Transcript: 

Robyn: Welcome to All Ears at Child’s Voice, a podcast discussing all things hearing loss. We aim to connect parents of children with hearing loss with the professionals who serve them. I’m Robyn Cox and I’m a large group preschool teacher at Child’s Voice. In my room, we try to mimic what a typical preschool classroom is like. We have circle time, read books, sing songs, and have centers play time, which is their favorite. My favorite thing about working here is getting to teach all of the preschool students and I love getting to build relationships with the kids and their families. We’ve been on a short break but last episode, Wendy and Tatum interviewed Meredith Berger from the Clarke Schools for Hearing and Speech in New York. It was a great discussion so go back and listen if you haven’t yet. And now to start the show. 

Wendy: Welcome to another episode of All Ears at Child’s Voice. We aim to connect parents of children with hearing loss with the professionals who serve them, we’re your hosts I’m Wendy Deters.

Tatum: And I’m Tatum Fritz. Today on the show we are joined by Dr. Michele Freidner from the University of Chicago. Our topic today is a little different from the subjects that we’ve discussed on the show so far, but we believe it will be a valuable discussion for our listeners to hear. So today we will be talking with Michelle about the language that we use when it comes to describing hearing loss, hearing technology and also disability in general and how this language can influence how people with hearing loss develop and view their identities. It’s a big topic, but we are excited to get into this discussion with our guest, Michele.

Wendy: Yeah, Michele, thank you for being on the show. Michele is a social and medical anthropologist and works as an assistant professor in the department of comparative human development at the University of Chicago. She has a bachelor’s degree in religious studies from Brown University and received a Master’s degree in anthropology from UC Berkeley and her PhD from the joint medical anthropology program at the university of California at Berkeley and San Francisco. Michele has written a variety of publications including books, book chapters and articles focused on hearing loss, deafness and disability with a special focus on the deaf population in India. Michele, many of our listeners are parents and professionals who work with hearing loss. And I think we’re a little bit less familiar with the field of anthropology. So can you share what it means to be a social and medical anthropologist? 

Michele: Sure. Thank you for that question. I get asked that a lot. So I think historically we would think of anthropology as the study of culture, specifically cultures in other places. So, historically anthropologists would go to other seemingly exotic places and study people who are different from them and attempt to understand those people in terms of what’s important to them and in terms of their experiences and their values. More recently anthropology has moved away from the study of culture as a concept because culture can be seen as something that’s quite static. So if we say this is an American culture or this is Indian culture or this is Deaf culture or this is hearing culture, it doesn’t really allow us to see nuance and it doesn’t allow us to see the ways that cultures are actually changing and mixed up and interrelated and complicated. So what I like to say when I talk about social and medical anthropology is that it’s the study of people’s experiences and the study of what’s important to them. Now you asked also about social and medical anthropology. So increasingly they are mixed up and they are connected in the sense that social, social anthropology has traditionally been the study of people’s everyday life, people’s social world, people’s experiences and so on. And medical anthropology was the study of medicine and the study of medical expertise treated as a culture, right? Or treated as an experience. So we’d like to say in anthropology that we are making the strange familiar and the familiar, strange. So what that might mean is I might look at both of you and say Hmm, you guys are professional therapists. What are the values that you hold? You know, what is this part of the culture that you are part of. What are the foundational principles, you know, and I would analyze those. Does that make sense?

Wendy: It does. How do you put that into practice right now? So what do you do at the University of Chicago putting all of these things together? 

Michele: So what’s interesting about the University of Chicago is that we are on the quarter system as opposed to the semester system. And so traditionally I teach two quarters of the year. So I teach in Winter and Spring. I teach two courses a quarter. I teach a course on the anthropology of disability where we look at disability as a category and as an identity in global and local contexts. I also teach in the core, the university has a strong core curriculum so I teach social theory in the core. And I teach two graduate seminars that are usually courses that I choose. And then the rest of the time I’m doing research and I’m writing. And the way that we do anthropological research is through participant observation and what that means is spending time with people to see what’s important to them and to see what’s happening in people’s everyday lives or in the clinic or in the classroom or in the home. We also do interviews. But for me, I find it much more rewarding to do participant observation so that I can see how people interact in the world.

Tatum: Yeah, yeah. Like you observed our toddler group this morning and asked a lot of great questions about how we as Child’s Voice see hearing loss, the therapy that we’re providing, even the language we use. I know the word blended came up for a blended preschool and you hadn’t heard that word before and that was something that you asked more about from like a language perspective or the rhetoric behind what we’re doing, which I think on a day to day basis we don’t always have time to think about that as therapists. We think more about like the direct goals that we’re working on with kids and less about the philosophy behind it. I heard you also mention part of the year you’re doing research. So do you mind sharing a little bit about the research that you’ve been involved with?

Michele: So historically my research has been on Deaf communities in India. So I started working with Indian Sign Language-using Deaf young adults. And I looked at how they try to create political, social, and moral worlds in which value was attached to deafness. So they saw deafness and sign language as something that should be valued and they wanted society and the state to recognize it as such. And so for that book, I spent a lot of time with Deaf signers in different spaces. So I was in schools, I was in vocational training programs, I was in workplaces, I was at home with people and I was just looking at how people were making worlds for themselves, how they were actively trying to create worlds that were useful for them and inhabitable. So then I went back to India in 2016 after my book came out and I saw that many of the state governments and the central government had started these innovative programs to provide below poverty line children with cochlear implants, free of cost. And I was very interested in these programs and thinking about how they were transforming how we think about deafness in India. And I decided that I wanted to study this and to turn my attention to the experiences of cochlear implant users and to the emergence of new categories in relation to deafness. So I’m interested in what it means to talk about a deaf person who hears or a “feaf hearer.”

Tatum: Yeah. And I think that that’s really relevant to a lot of the families that listen to this podcast. I think a lot of the families that listen to the podcast have kids with cochlear implants who are learning to listen and talk. They’re being raised by parents who are hearing and that’s something I’m interested in falling in between the two categories.

Michele: And then I think it’s an interesting question of how do we think about it not as falling between two categories but as a category in and of itself.

Wendy: Yeah. It can be an identity of its own.

Tatum: So we’ll get into that. There’s one quick follow-up I had about your research. So you said that the main way that you like to research different populations is to like integrate yourself within them or like participate within them. So how do you do that in a way that you don’t feel like you’re intruding or changing, like the way that the people that you’re observing are behaving?

Michele: That’s a really important question. And that’s something that we all struggle with all the time because by nature of being there, we do change the environment and I think we have to just account for that and be reflective about what it is that we’re doing. And I definitely feel like I’ve been in therapy sessions where I just wanted to sit back and observe, but the therapist or the parent, or even the child, started talking to me and I was also included in the session in some ways. And I think it’s always a negotiation and there’s always something to be mindful of, especially when you’re working in a different country and you are clearly a different nationality and a different race and you have different economic and educational privileges.

Wendy: So you mentioned your research in India and it sounds like the Deaf community there influenced policy changes, but what about social changes, the social perception of deafness, how have you seen that change over the past few years?

Michele: So what I think is really interesting in relation to that is that the current government is very much focused on disability as a category. They’ve unveiled an accessible India campaign. There’s a new disability law. They signed and ratified the United Nations convention on the rights of persons with disabilities. So yes, there has been a lot of policy change but I think your question about how does that actually trickle down into everyday life is a really important one. And one thing that I found is that Indians, and this is probably a generalization, but I do think that for the most part, Indians have a wider range of communicative practices that they use. So what I mean by that is that they’re often more comfortable gesturing. They’re more comfortable pointing, they’re more comfortable touching, and they’re more comfortable improvising. And so what I think that means is that deaf people often have interactions out in public that are quite seamless. Whether it’s going to the shop and buying a banana or a kilo of bananas or going to buy a pot to cook with. These are things that happen seamlessly. And so I do think on an everyday level people are quite accommodating and quite oriented to trying to build a life with those around them which I find really interesting and really rewarding. Sometimes I wonder if there’s tension between how these top down approaches and how these bottom up approaches work because you can have laws and you can have legislation and you can have policy, but this question of how does it impact what’s happening on the ground, and then how does what’s happening on the ground, how does that trickle back up? Or how does that flow back up? I’m not sure. But I do find that for the most part, Deaf signers are pretty well integrated into their families and communities and into the surrounding environment. There are definitely challenges when it comes to education and when it comes to come to employment.

Wendy: I’ve worked with a number of families from all over India. And every family that I’ve worked with seems to have their own individual story and it’s just all been very fascinating to meet all these families from very different cultures even though they’re from the same country.

Michele: Yes, it’s incredibly diverse country in terms of class, religion,

Tatum: Spoken languages, they have so many different languages.

Michele: And I think the fact that there are so many different languages makes it so that people are more able to and willing to negotiate.

Tatum: So I think we could make a whole podcast episode out of your research in India, but let’s move on to our main idea. And before we do that, you may have seen in the notes that we sent you that we usually ask guests for like a fun story or like something heartwarming, something that they can share from the past week just to get our listeners like a little bit aware of like who you are as a person. It doesn’t have to be related to hearing loss or the topic. Just something funny, heartwarming, cute.

Michele: So this week was picture day at my child’s school and my child has worn cat ears to her picture day in her individual and class photo for the last three years. And so this year she went to school with her cat ears on already for her photos and she also wore a bow tie and a collared shirt. She said she wanted to wear a tuxedo, but we did not have a tuxedo at home and so she wore a bow tie and collared shirt and her cat ears.

Wendy: That’s adorable.

Tatum: That’s really cute. How old is she?

Michele: She’s seven and I have to say I was a little bit worried that she might be teased or that somehow something might happen that would make her feel not good about herself, but in fact it worked out really well.

Tatum: Thanks for sharing that story about your daughter. That’s really cute. Why don’t we jump into the main discussion? As we said at the beginning, we wanted to have you on the show today to discuss how the language we use when discussing hearing loss influences how the children that we work with view their identities. Our listeners vary from like professionals to parents. So also just like the language that our parents are using. So if you are comfortable doing so, could you tell our listeners about your own experience with hearing loss and how it informs your identity?

Michele: Yes. Thank you for that question. So I identify as Deaf. I have a severe to profound loss. I wore hearing aids from the age of three when my parents found my hearing loss to the age of 34 and when I was 34, I got a cochlear implant on one side. And then recently when I was 41, I got a cochlear implant on the other side. I grew up speaking and I was always mainstreamed. When people ask, you know, how I identify myself, I will say I identify as Deaf. And I learned sign language when I was in my twenties and I should say that going to India and working with Indian signing deaf people also made me a lot more comfortable as a signer. And then as an adult, I’ve been interacting with a lot of Deaf academics and Deaf community members and that’s been really wonderful. And I should also say in terms of identity, one joke that we often tell in my family is sometimes when we go to the store or we go to the dry cleaners or random places, people will say, “Oh, you have an accent, where are you from?” And I say, “Well, I’m from the US” and they’ll say, “No, really? Where are you from?” And I say, “Well, I’m from ‘Deafville.’”

Wendy: That’s a good one.

Michele: And then they’ll say, “Oh, ‘Deafville,’ where’s that?” And so my daughter has actually gotten really into that too. And she’ll often say, “My mama is from ‘Deafville.’” But then that night or a few nights ago, she said to me, you know, there’s not really a place called “Deafville,’ don’t you?”

Tatum: So Wendy’s parents have a hearing loss and they also got cochlear implants as adults. I mentioned that because they decided as adults to get cochlear implants and Wendy was our first guest speaker. She talked about that experience and her experience growing up being raised by her parents. So how was that experience for you getting an implant as an adult? Maybe just like very briefly since it’s not our main topic, but, what prompted you to make that decision?

Michele: Well, I had met a lot of Deaf adults who had gotten them as adults and they were finding them to be very beneficial for the most part. And it seemed like an interesting thing to do. And it seemed like something that would be beneficial and so I thought, why not go ahead and do it based on the testimony that I had heard from other adults. And so I decided to do it. This was while I was still in graduate school and so I had time and I had a great insurance plan that covered it. And yes, for me it was a very positive experience. I mean it took a while in the beginning for my brain to adjust and for my body to adjust. But after I did it, I found it very helpful in the sense that I no longer had to lipread as much and I felt like I didn’t have to work as hard to hear. And to me that was really wonderful.

Wendy: So when you decided to move forward with the cochlear implant, how did you decide which ear to do?

Michele: We chose the worst ear.

Wendy: Okay. Similar to what my parents experienced. And what made you make that decision of choosing the poorer ear, if you don’t mind my asking.

Michele: It seemed like the smarter thing to do in the sense that if it didn’t work there was less loss. There was also a sense that something could go wrong. And so for that, I think my audiologist chose to do the worst ear. And I should say that I think this practice of older adults who have not used technology choosing to use technology is very interesting. You know, when we think about people becoming pioneers in relation to technology, in relation to plasticity and in relation to their bodies, I think this is a really interesting practice that should be studied more. Traditionally, and historically we’ve divided up the world into the Deaf world and the Hearing world or Deaf culture and Hearing culture. And I think what we’re seeing is a lot more complex now. I think these worlds, in the plural, are increasingly intermingled and that people do move in and out of worlds and combine worlds. And I should say that in the discipline of Deaf studies, which I can talk more about if you’d like, and in anthropology of Deafness and disability, we are increasingly using plurals. So we talk about Deaf cultures, we talk about deaf worlds, deaf communities, sign language communities. And I think it’s really important to add nuance to the discussion because I think it’s really harmful to set up binaries and to set up these black and white really rigid divisions that don’t actually exist on the ground.

Wendy: I wonder if that’s, this is a very comforting thing for parents to hear. But as you say, there is fluidity between deaf/ hearing. You know, that the decision that they make to move forward with a cochlear implant for their child doesn’t mean that that decision can’t shape over time depending on what the child experiences and what the family goes through.

Michele: Yeah and I think it’s really important to take seriously the fact that children can have multiple identities, you know, multiple communities, multiple and intersecting communities and worlds. I do want to say that I take seriously a lot of the stories that I hear from parents about feeling shamed and vilified, villainized by what they’d call Deaf culture activists or Deaf community activists. I personally have never seen this. That doesn’t mean it doesn’t take place. And it doesn’t mean that I don’t take it seriously. And I feel really horrible when I hear about these things because no parent should ever feel shamed for decision that they’re making as long as it is an informed decision.

Tatum: Probably the majority of my experience has been working with families who mostly only use spoken language, but we have a lot of families, especially recently, that have been using both. And they’ve had some experience with that. And I think just like you’re mentioning, this idea that there is like a binary puts a lot of pressure on families.

Wendy: And I think as therapist too, I have become more confident in my prognosis, for lack of a better word, about where a child is going to end up and that gives me a little bit more flexibility in, you know, working with families. And really not being afraid of them not choosing one of the binary options because you can still achieve the same goals with many different ways.

Michele: I agree. Yeah. And I do think that children again can move in and out of spaces. They can be comfortable in signing spaces. They can be comfortable and spoken language spaces. They can be comfortable in gestural spaces. Children grow and develop and move through multiple types of spaces and modalities and I think that’s amazing. You know, we talk a lot about tinkering. We talk a lot about adjusting, we talk a lot about flexibility and I think it’s important for children to be exposed to different things and families as well. One of the things that I am often concerned about is that sometimes it seems like parents are not told about their choices. I don’t know how much that happens in the US. I know in India when I talked to parents, they’re not often told that Indian Sign Language is an option. I remember talking with one mother and she thought that Indian Sign Language was the gesture system that she was using at home and she was amazed to learn that there was something called Indian Sign Language with a lexicon and a grammar that was incredibly robust, and this was not the mother’s fault. This was actually a mother who had looked for a lot of these sources and who had traveled from a small town to Delhi in seeking resources.

Wendy: I think every family might have a different story about how they were presented with communication opportunities and how that was presented to them.

Michele: I like the way you’re using the word opportunities. 

Wendy: Communication opportunities is a term that I’ve heard often and I’m trying to adopt that as well. It’s better than, you know, if we go back to trying to get away from a binary, if you say option it means you have to choose one and that’s it.

Michele: But if you have the opportunities, you can have multiple opportunities. And I think the other thing about “options,” so there was a recent dissertation done in Belgium by a recent PhD awardee, [name inaudible], and she found that parents were presented with options, but then sign language was only an option and then the child was set to need it. So it was something that a child needed, not necessarily something that a child would choose. And I thought that was interesting.

Tatum: I have one follow-up question about your own identity. So you got a cochlear implant as an adult, did that change your view on your own identity in any way?

Michele: It did not. The one thing that has been really interesting, especially after getting this second implant is that without the implants on, I think I am “deafer” audiologically than the majority of my deaf friends. So I may hear better with my implant in a sound booth. However, without the implant, I am actually “deafer” audiologically and so that extreme has been quite startling to work with.

Wendy: Do you think that’s a result of the surgery itself or your brain training itself to hear and then having that sound taken away?

Michele: That’s really interesting. I assumed that it was because of the surgery, but maybe not.

Wendy: Or maybe it’s both.

Tatum: Yeah, it could be a combination.

Wendy: I don’t have the answer to that.

Tatum: Yeah, hearing is so fascinating and the brain is so fascinating.

Michele: And I was going say in relation to your question about how my identity has changed with the cochlear implant. I would say that I am perhaps “deafer” and more hearing. Right? And so in some ways I inhabit both of these extreme, right? And if you think about deafness as a spectrum, I think I can exist at different points on the spectrum at various points during the day. And I think it’s interesting. I don’t think that I’ve ever stopped seeing myself as deaf. I do remember when I went for testing recently being very amazed and amused by the fact that what my audiologist said was, “wow, you’re almost normal,” you know, or “You almost have normal hearing.” And I found that intriguing.

Tatum: Yeah, that is very interesting. Um, and then as a follow up to that, you also learned sign language as an adult. Did that change your identity in any way?

Michele: Not really. I think learning sign language gave me another tool and another language, for sure, to use to communicate. But I don’t think it changed my identity because I think I always had an identity of myself. I always saw myself as a deaf person and I’ve always identified a deaf person now. And I do think, you know, we talk a lot about this binary, again, in terms of binary, it’s deaf/ hearing and then there’s lower case d and capital D  for parents who might not know about that, historically I think actually, and it might’ve been the 1980s, I have to go back to my notes, but James Woodward, who is a linguist made a distinction between lowercase d and capital D and he was talking about lower case d as marking hearing status or audiological status while capital D was marking identity categories and mark Deaf people as linguistic minorities. And ever since that distinction was made, people have grabbed it and then ran with it. And what happened as a result is in published articles and in Deaf studies and anthropology articles, people have often been asked about their language choices. Why are you writing this with the lower case d? Why are you writing this with a capital D? You know, why do you use this way of doing it as opposed to that way? But recently in 2016, James Woodward wrote an article in which he said the way that this distinction has become so overblown is really problematic. And he was only writing about a specific case in America at a specific time and that he had no interest or intention of this becoming an orthodoxy.

Tatum: Yeah. 

Michele: And I think it’s also interesting to think if you were going to take that binary seriously, you need the lower case in order to have the capital, right? And so there’s a way that these two are constitutive to each other, they create each other. But I think once you get deeply into people’s everyday experiences and spending time with people, you see that that binary is really hard to hold up. It doesn’t hold up analytically so as a researcher it’s really hard to work with. I think I understand what people are doing politically, you know, politically what they are trying to do is they’re trying to carve out a space of value for Deafness you know, they’re trying to say, “look, I’m Deaf and I’m proud of it.” And Deafness does not always mean deficit. I don’t know if either of you familiar with the 2014 book called “Deaf Gain?”

Tatum: I’ve heard the term “Deaf gain” on NPR actually because when “A Quiet Place” came out, was it, I think it’s “A Quiet Place.”

Michele: Yeah, “A Quiet Place.”

Tatum: Have you seen that movie? You haven’t seen it Wendy?

Wendy: No.

Tatum: Do you not like horror movies?

Wendy: I don’t. My husband watched it and he told me that I had to and then he told me the entire plot of the movie so now I don’t need to watch it.

Michele: It is so scary.

Wendy: It sounds terrifying. No, thank you.

Tatum: I like scary movies so it did not scare me, but it is quite good. I like John Krasinsky too, so that was one reason I wanted to watch it. I can’t remember who they were interviewing on NPR cause I feel like it wasn’t someone related to the movie they were just talking about the concept of “Deaf gain.” And they talked about how in that movie, the girl who signs, has hearing loss, had a cochlear implant, I can’t remember.

Michele: I think the father was developing a cochlear implant.

Tatum: If you watched that part I don’t think all of that was like audiologically accurate. They were talking about the concept of how her deafness was a positive because in this society where listeners, if you haven’t seen this movie, you have to be very quiet to avoid this new kind of alien or invasion that hunts people via sound. This family already had this language that they were able to use in a quiet manner. I know deaf people are not always very, deaf People who sign are not always very quiet, but they were able to use language in a quiet way to avoid the alien species or whoever had invaded. And they talked about how that’s the concept of deaf gain, but I didn’t know there is a book on it.

Michele: Well, there’s a book, it’s called “Deaf Gain, Raising the Stakes of Human Diversity,” and the argument about the editors and the different authors in the book make is that Deaf people contribute to human diversity. They contribute language, they contribute a beautiful sign language. They contribute visual acuity to workplaces, they contribute artistic practices like art, music, movies, poetry and so on. And so the argument is really trying to make space for deafness as something that’s valued, which is sometimes why I think the idea of hearing “loss” is something that makes me cringe. And so I think in some ways deaf as a category avoids some of that deficit language because I think hearing loss, loss automatically assumes that something is missing and what the authors of “Deaf Gain” are trying to do is they’re trying to say instead of thinking about hearing loss and how I’ve lost my hearing, let’s think about the things that we gain because of Deafness. On the other hand, if we’re talking about nuance, you know, I think parents do grieve. And children also grieve and it’s certainly difficult to grow up as a deaf person, who is different from everyone else. And so I think we need space for both celebratory logics and for acknowledging ways of being in the world that can be painful. But then the question of whether that pain comes from the hearing loss itself or from social and structural barriers and educational barriers is something that I think we also need to consider.

Tatum: We interviewed a psychotherapist who works with Deaf and Hard of Hearing people and families of Deaf and Hard of Hearing children. And she talked lot about the initial grief that families can go through post diagnosis, this grief may occur later on when they realized that the world is not always accommodating to people with hearing loss.

Michele: And I think that there are different types of grief. And I think it’s always interesting to think about, there’s really wonderful literature and anthropology on the senses and specifically on the sensorium and the ways that for many Deaf people, they don’t experience a world every day in which they are working through deficit or a loss. I don’t feel like I’m missing something. Although now I do in the sense that without the implant, I do feel like there’s a dramatic shift that I need to negotiate. But there’s also a loss that comes when I put on the implant and I am confronted with loud sound. So there’s a loss both ways or there’s a shift both ways that happens.

Wendy: I think something that I’ve experienced parents struggling with, it speaks to what you just said about wanting to honor their child for who they are, but also wanting to give their child the communication opportunity, as we’re using that term of listening and spoken language because they want them to be able to either navigate any world that they choose or you know, this is their world. 90% of children with hearing loss are born to hearing parents. So I think that there’s a struggle between those two thoughts. Can you tell us some of your views on that? 

Michele: That’s a great question. And I think parents do want children to be like them and they also want children to have easy paths and paths in which there’s not a lot of friction, paths in which children can seamlessly move through life.

Wendy: If I can just jump in for a second, I think that’s so attainable now, which is a vast difference. I know from 30, 40, 50 years ago, you know. We have many babies that are implanted under the age of one. I wonder if those children will ever identify as Deaf because they will grow up very differently.

Michele: Right. And then that is a very interesting question on do we want those children to identify as Deaf?

Wendy: I think as a therapist that that’s not our place to say.

Tatum: One reason why we wanted to have you on is parents think a lot about identity and like concepts of identity. They’ll ask me how they should talk to their children about their hearing, about their devices. As a hearing therapist, I feel like it’s not my place to say, but it’s, it’s very interesting to think that they’re thinking about it. 

Wendy: Something that’s really cool that we’ve seen over the past few years is young adults with cochlear implants as teachers. We have two teachers that Child’s Voice that have cochlear implants. I know some audiologists.

Tatum: Yeah, I know lots of audiologists with cochlear implants.

Wendy: It’s incredible. I think there are so many different reasons for that, but it’s exciting that we live it in that time that there are all these reason.

Michele: People have more opportunities and more things that they can choose because we want to maximize the possibilities that people have available to them. Similarly, we want to maximize the identity categories that people have available to them. And one of the things we talk a lot about now in social sciences and humanities is the concept of intersectionality and the idea that people and children, children being included in the category of people, occupy and inhabit multiple identities and that these identities rub up against each other and then come to create new identities as well.

Wendy: How do we help families frame this? Like how do we help them celebrate their child in all of these different ways, celebrate their listening and spoken language, but also celebrate the fact that they have cochlear implants. How do we do that?

Michele: I think it’s an interesting and important question. And I don’t quite have the answer yet in terms of what that identity category should be called.

Wendy: Is that what’s coming from your research?

Michele: Yes.

Wendy: Oh great.

Michele: I’m hoping to talk more to implant users and to talk more to people who are experiencing this themselves. I think it needs to be a category that somehow celebrates, the humanity of the person and the person’s interactions with the machines. I think it really is about the person’s agency. So I like the idea of the “Deaf Hearer” or hearing deaf person. I like the idea of putting those two categories together.

Wendy: I’ve heard that term used recently.

Michele: So the thing that I find problematic is when parents try to just ignore, and again, I’m speaking normatively here, I understand that for both of you it’s really important to honor and respect the choices that parents make. But for me as a researcher and also as a deaf person myself, I can say that I do find it problematic when the word deaf is never in the conversation at all. Because I think that also means that children might ultimately be left with fewer resources. What happens if the implant dies? Right? What happens if the child needs to advocate for themselves. You know, what happens if the child wants to take advantage of the American Disabilities Act or other disability legislation. They unfortunately or fortunately need the category of deafness to do that. Right? And whether we like it or not, the category of deafness still has legal purchase in our society. And I think that’s really an important.

Tatum: So I’m not a parent. But I feel like I can sympathize with parents who we’ve talked about earlier, they want their child to be like them. So I understand, , why some parents might use language like that we’ve discussed so far. But this is one reason why we kind of wanted to like broach this idea on the podcast cause this is something that doesn’t really come up in therapy. We don’t really know what the best way to navigate this with families, but I just feel like it’s an important topic that like, it’s more than working on speech and hearing and listening language goals. Like there is this identity component to these children like that we shouldn’t be ignoring.

Michele: And I think if they’re gonna think about listing children’s identity, you know, or the ways that parents can sit down with children and say, so who are you? You know, dad, you’re hearing, you’re blonde, you’re a girl, you’re a boy. You are Jewish, you are a Christian, you’re Mexican, you’re American, you have all of these identities and they make you who you are. And I think it’s important to look at the ways that saying “I’m hearing” doesn’t cancel out the fact that you’re deaf and saying that you’re deaf doesn’t cancel out the fact that you’re also hearing. I’ve interviewed deaf adults and one deaf adult told me, “Well, I’m not really hearing because the implant that I get through my implant is fake hearing,” which I thought was interesting and actually factually inaccurate because it was hearing and to call it fake is problematic.

Tatum: So you observed our toddler group today and one of our parents in our toddler group was sharing a picture of a baby doll that they have at home that they used puffy paint to paint hearing aids on the baby doll, which is really smart because I see these for sale online and they’re very expensive to buy a doll with like hearing accessories. So parents, just a little tip, get puffy paint at the craft store. But I have noticed, for this family, they wanted a doll at their home that represented like their child’s own identity. Their child uses hearing aid. Their doll has hearing aids. We also have, at our toddler group, obviously most of our kids are using devices and all, a lot of our families will point out each other’s devices. “Look, she has cochlear implants like you have cochlear implants and her cochlear implants are white and yours are black.” And even some of our kids who are getting closer to three and have higher language will start commenting on other, uh, kids, cochlear and plans. It’s really cool.

Wendy: You know, we’ve mentioned this on the podcast before. One of the things that we do at Child’s Voice in the primary two program is a self-advocacy curriculum where the children learn how to talk about their devices and how to talk about advocating for themselves. And it’s really incredible. They get really good at it and it’s really cool to see them have their own language about themselves. It’s not something that we hide in any way or teach kids to not honor or teach them to be ashamed of it. We teach them, this is what you have and this is how you can advocate for yourself if you feel that you’re not having access to everything that you should.

Michele: And I think it’s really interesting how we now use the language of access.

Tatum: So one thing we also wanted to talk about today is just how the language of our field has changed over time. In the listening spoken language side of things, things have changed a lot. I’m actually studying for the listening and spoken language exam right now so I was reading some of the history, and I hadn’t heard the term acoupedics before. 

Michele: Oh, so interesting.

Tatum: There’s like so many terms for auditory oral, auditory verbal, acoupedics, unisensory.

Michele: Unisensory approach, multisenosry approaches.

Tatum: Yeah, I hadn’t heard that before. Yeah. So this was above me even just like two days ago, but what kind of changes have you seen in the listening and spoken language world or like the auditory verbal therapy world and what interests you about those changes?

Michele: Well, there seems like there’s a lot more focus on the brain and on plasticity. It also seems like there’s more focus on multi-modality increasingly. I think there was just an article in an ASHA publication about the importance of adding multimodal resources to one’s toolkit, which I found very interesting. There’s more of a focus on so-called natural communication and on giving children access to multiple sensory input. And this is where the language of access also comes in because we talk more about access and what children have access to through their devices, what type of auditory access they have, what types of linguistic access they have and so on.

Wendy: Yeah, I completely agree with you. I think as I’ve been in the field, again, as we see how incredibly successful these children are, we trust ourselves a little bit more. We trust the technology a little bit more and we trust development a little bit more/

Michele: The other thing I was just going to say in relation to what we were talking about before in terms of categories one thing that I’ve been trying to think a lot about is the idea of multiple normals. So I wrote a piece for the New England Journal of Medicine, which will hopefully be published sometime this year that is introducing the concept of multiple normals to clinicians who are working with children with hearing loss or deaf children. And this idea that there are multiple ways to be normal. You know, and we might say we don’t like the word normal, but for better or worse, people use it constantly. Right? So how do we become oriented towards or how do we come to realize that hearing aids and implants and sign languages are just as normal as anything and everything else?

Tatum: How does community inform identity? Earlier on this season we had one of our alum on and she uses cochlear implants, she talked about how… she navigates the hearing world very well and her spoken language is very good. She was talking about how they’re able to relate to each other on a different level. So I think of that as almost as being like this separate community that you’re speaking about. So I think most of the, they’re mostly teenagers, but the, the children in that community use spoken language, they have devices, she has a sense of community that is different than the community that she gets with hearing people.

Michele: Yeah. And I wonder though, if community is the right concept to use here. 

Tatum: Okay.

Michele: I don’t know. I think again we get into these concepts like community and culture and world and social group and these somehow feel like bounded categories. So one of the things that I worked on with our colleague is this idea of deaf-sameness. And we talked about, again, this is with signers, but we talked about how very often when deaf people who sign across the world, when they meet each other, they’ll sign, “Oh, you’re deaf. I’m deaf. We’re the same.” Right? So there’s a sense of sameness. Or a sense of similitude. And I wonder if that is what your alum is thinking about too, that there is a sense of sameness. There is a relationality, there’s a shared experience that exists and so what did we call that shared experience? Is it affinity? Is it an understanding? Is it a shared way of being in the world? Because in a way, yes, they are a community, but it’s a community that’s not bounded by place or time or it’s a community that might pop up when two people encounter each other and it could just be two people who encounter each other and they both have devices or they both had a similar experience being mainstreamed. And so how do we think about those experiences and honor them and take them seriously?

Wendy: I think continuing to talk to people like our alums and like families of children who received implants at a very young age, continuing to talk to them and bring them together with one another will hopefully help answer some of these questions that we all have because it’s really up to them.

Michele: Yes.

Wendy: I don’t think we should be the ones to decide what to call any group of people, that it should be their decision.

Michele: Right.

Wendy: So as we continue to communicate with them they’ll give us the answers.

Michele: I think that’s right. And I think it would be amazing to have a workshop or some sort of meeting where people are brought together and they can think about this and think about what identity categories they might use.

Wendy: I think that’s why we try really hard to bring people together. That’s why we have a toddler group to bring kids together so that they can participate in an environment that’s accessible to them. And they can also see children with devices that are similar to them. And then the parents get to interact with one another. And families that we work with at home, we try to connect them with other families who have similar shared experiences because they can get something from each other that we can’t provide. 

Tatum: We’ve been talking for a while so let’s start wrapping up. So a couple of areas that we were interested in hearing your thoughts on are your thoughts on the language that we use to describe a child’s hearing loss if you want to share a little bit about that?

Michele: Yes, so that’s something that I struggle with too because people will often ask me what my level of hearing loss is. It’s very interesting actually to be in the field interacting with professionals as part of my research because people always say, “Well what is your level of hearing loss? How many dB loss do you have? You know, are you severe, are you moderate, are you profound? What are you?” And I can tell you that I personally don’t use those categories in everyday life. I use the category of deaf. I don’t really go into my audiogram and what it looks like. And one thing that I think is really important is for professionals to think about how they use language and to not use deficit language when talking about failing hearing tests. So as opposed to saying your child failed the hearing test perhaps they can say, we see this on the hearing test, you know we see that your child is hearing at this level. You know, we see that there is a discrepancy between typical hearing and this level of hearing. And I understand that often professionals want to impart urgency, but at the same time there can be something very devastating about hearing that your child has failed something. And I think this language of failure is something that stays with parents and with children. I don’t know if you guys saw The Listening Project, is that what it’s called? Irene Brodsky’s movie.

Tatum: Was it the one where they interviewed a bunch of people?

Michele: A bunch of kids, deaf adults.

Tatum: Yeah. Uh huh. And they talked about a lot of things.

Michele: Yeah.

Tatum: Yes, I think I have seen that.

Michele: And so there was one woman in that movie, in The Listening Project, who she’s a surgeon now and she talked about exactly this experience of a remembering being in a sound booth and being told that she failed the hearing test, and her response during the movie was to say, “I was just devastated when I heard this because I don’t fail anything. I’m a straight A student. I’m a surgeon now. I don’t fail things.” You know. And I think it’s really important to think about what that language of barrier does for parents.

Tatum: Yeah, that’s very interesting. I think too, even on a pragmatic level when it comes to full audiological testing it’s not helpful to say the word failed. Because we know that hearing is a spectrum and you might be at a different level. There is a difference between a moderate loss and a severe loss. So having the word failed is not very helpful just in a pragmatic sense. In fact this exists in other parts of the speech pathology field. Like people will say you failed a swallow study, which is also not very helpful because you don’t fail a swallow study. There’s a range of things that are found on a swallow study and you need to know what that range is just like you need to know what this audiogram means. So the concept of failed is not helpful. One area where I see the word failed the most is the newborn hearing screening. Parents will use the terminology failed. And I don’t know if that’s what they’re hearing in the hospital because like our terminology is “referred” on the newborn hearing screening. As someone who does initial evaluations in early intervention, if you ask like, did your child refer on the newborn hearing screening? Families aren’t familiar with that terminology. So I get the sense of why “failed” is used, but I also understand like the connotation of it. 

Wendy: Another question we wanted to ask you is what are your thoughts on person-first language? So for example, saying a person with hearing loss versus identity-first language. So a deaf and hard of hearing person. What are your thoughts on that?

Michele: Well, I know that there are people who have very strong feelings about this. There’s been a lot written in terms of both. So my thoughts are, I honor and respect whatever a person chooses to be called. I personally prefer identity-first language. And the reason for that is because I think that a person with hearing loss implies that the hearing loss is static. That it’s something that’s separate from the person as opposed to being something that (A) changes with time and (B) influences and makes up who that person is. And then I also often will refer to myself as a disabled person. And the reason that I don’t say I’m a person with disability again is because disability is not a static category, it’s a processual, interactive category. And I take seriously what disability activists and disability scholars say about disability being caused in the environment and disabled something that happened to the person. So I’ve always used identity-first language.

Tatum: I’ve also noticed, this topic’s it’s probably been around a lot longer than I’ve been aware of it. But I’ve seen like conversations about this in the disability community, in the autism community. And I think it’s something that I personally, I refer to the parents usually cause we are working with children. So I tend to try to mirror the language that at least they’re currently using. I wanted to bring that up on the show cause I feel like a lot of our listeners probably haven’t heard of this conversation.

Michele: But it’s a very hated conversation.

Tatum: Yes. I follow a lot of disability rights activists on Twitter as well. It and it is very heated.

Wendy: Just what you said, like, you honor what the parents use, you know, the child can’t speak for themselves just yet. So until that happens, it’s a parent’s job to speak for their children. So, for better or for worse, you mirror what the parents use cause it’s their choice. It’s their child.

Tatum: So why don’t we start wrapping up there. So the last thing we always like to ask our guests is for any general advice. So this could be anything that that would be good for our listeners to hear. So, and as a reminder, our listeners are parents and professionals.

Michele: So for me, I think it’s really important to embrace multiple normals and to work toward a world in which there are multiple ways of being normal and that include deaf-hearing or hearing-deaf or whatever you want to call yourself or your child for lack of a better word. And I also think it’s important to do away with binaries and to think about communities and cultures and worlds and networks in the plural and to really recognize complexity that exist because people are complicated and we don’t want to reduce them to a binary or to an either/or. Why can’t children and families be both/and? So I think that would be the one piece of advice I had.

Tatum: It’s good to remember as a professional too.

Wendy: And like you said, Tatum as a hearing person, right? Like we have a different experience than our families have and to always keep that in mind is really important, so thank you. Yeah, thank you. It’s been so fascinating.

Tatum: Yeah. I can’t believe it’s been so long.

Michele: Thank you. Sorry. Thank you.

Tatum: So why don’t we wrap things up there. Michele, thank you so much for joining us. This has been fascinating. 

Michele: Thank you so much for having me. And if people are interested in reaching out to me, they can email me. My name is Michele Friedner. It’s michelefriedner@uchicago.edu.

Tatum: Perfect. And we’ll also list that in our show notes, listeners.

Michele: And I welcome correspondence and contact and communication.

Tatum: Thank you so much for joining us for another episode of All Ears at Child’s Voice. And if you would like to reach out to us, you can find us on Twitter and Instagram. I’m @TatumFritzSLP and Wendy is @WendyDetersSLP.

Wendy: You can also email us at podcast@childsvoice.org And you can find episode show notes and transcripts at our Child’s Voice website, childsvoice.org.

Tatum: And if you’re interested in learning more about Child’s Voice, Child’s Voice is on Facebook as well as Twitter and Instagram with the handle @childs_voice. No apostrophe.

Wendy: We’ll see you next time.

Tatum: Bye.

Wendy: Bye.

Robyn: Thanks for tuning in and listening to season three. This is the last official episode of season three but stay tuned for a mini episode that will be released soon. In the upcoming mini-sode, Wendy and Tatum will reflect on season three and share their plans for future seasons. 

CV Students: BYE THANKS FOR LISTENING.