Interview with Dr. Laura Mauldin: Cochlear Implants and Deaf Children

I’m always interested in the latest scholarship about disability. I had the distinct pleasure of interviewing sociologist Dr. Laura Mauldin about her new book, Made to Hear: Cochlear Implants and Raising Deaf Children. Thanks, Laura!!

What prompted you to write a book about cochlear implants (CIs), Deaf children, and their parents? 

There’s a long list of life and academic experiences that led me to write a book on this. When I was growing up, there were deaf students in my school and I started learning sign language as a teenager. During college, I got more involved in the Deaf community and later took courses in interpreter training.

I then entered a Masters program in Deaf studies at Gallaudet in Washington, DC. After that, I decided I needed to understand how the Deaf community fit within larger society. One of the things I had noticed was that the Deaf community often defined itself in stark opposition to a medical or pathological understanding of deafness. It seemed to me that there were these different versions of deafness out there in the world, but that medicine played a really important role in both versions and I wanted to understand it better. So I started a PhD program in sociology to give me the analytic tools to think about how such a community fit in the world.

During my studies,I completely fell in love with critical medical sociology, science and technology studies, feminist theory, and disability studies.  When it came time to decide on a dissertation topic, my interest in those areas paired perfectly with my background in the Deaf community. I felt truly curious about how parents who opt for cochlear implants feel about their child’s deafness and the process of obtaining a CI, the professionals who help them do so, and the structure of our interventions in the US. For so many years I heard critiques and anger from the Deaf community. I wanted to find out, empirically, what was happening on the ground and how families felt about it. That is, I had been exposed to the Deaf view, but I hadn’t immersed myself in the other view. As a sociologist, I felt that comparative framework was important and found it extremely compelling.

You conduct fieldwork in a variety of settings for your research. What were the challenges gaining access to these spaces such as a home or clinical setting? Did your observations and overall thinking change over time the longer you were in the field?

This is such a great question. I very clearly remember the first clinic I pitched my research to because it was such an uncomfortable experience. I was very naïve to think that my curiosity about this wasn’t going to anger people. Because of my background (in the Deaf community and as a professional interpreter) and my honesty about it , I was immediately viewed as suspect.

CIs are a political lightning rod and although I thought it logical to try to understand what CIs meant to the families getting them, others assumed I had dubious motives. So yes, it was challenging. But over time, I learned how to pitch the study in a way that was legible and the clinic I ended up doing my research in was amazing and full of people who worked very hard and facilitated my research. I am still very grateful to them. But along those lines, yes, my thinking did change while I was in the field. I think one of the tendencies in ethnographic research is to begin to identify with and sympathize with your participants. And I did.

From the beginning, I was extremely aware of how different of a life experience I brought to the room. The first thing I realized was that the CI world was really not about Deaf people at all. That is, I was around hearing people all day and most of the time around deaf babies/children who looked very much or aspired to be like hearing people.

So it was a bit shocking for me to realize that my research wasn’t about Deaf people at all. And this made me feel a lot things; it was heartbreaking because I value the Deaf community and its role in my life so much. And I struggled with that, but I had to constantly focus outward on the systems that were creating that environment. That is, how had histories and policies created the world of CIs? How did our broader social norms around disability, technology, and motherhood all work together to produce that space (the clinic) and the people in it (medical professionals and parents)? Keeping my focus on these larger systems became my coping mechanism, but also central to my methodology. But mostly I began to really feel for the mothers in my study – they worked so hard and had so much heartbreak and felt such pressures to raise a ‘perfect kid.’ In other words, I started out the research thinking that I knew how I felt about CIs, but by the end, I felt conflicted and ambivalent and developed a lot of empathy for the families involved.

New technology often seems scary and then it becomes part of the norm in this continuum of change. Do you think the rise of cochlear implants changed what it means to be Deaf? How has it changed Deaf culture/community? What do you foresee with the tensions within the Deaf community over CIs?

Since I am a hearing person, I don’t want to speak for how CIs change the meaning of deafness for d/Deaf people, but I can speak to how CIs have changed how the meaning of deafness gets ‘made’ in the clinic – it’s presented as a neurological processing issue now because CIs give us access to the brain. That then becomes the site of the ‘problem’ (I have a whole chapter on the brain in the book.)

CIs are pretty normalized now as a treatment option for deaf children that have the appropriate type and degree of hearing loss, so for the most part (at least with the parents I saw) it is a fairly uncontroversial decision for parents to get one. That’s not to say that some parents don’t struggle with it because some really have a hard time deciding to do it. But back to the Deaf community – I think CIs are just one more iteration in the centuries long effort on the part of hearing people to ‘fix’ deafness.

There is nothing new about that at all, it’s just this particular technology is new. So it’s my opinion that Deaf communities are always adjusting and pushing back against whatever ‘fixing’ technology is currently in fashion. The thing with CIs is that they are much more successful than any other technology in the past. So, it remains to be seen how it changes the community…but one thing I do think will happen is related to the disparities in implantation.

Some of the literature indicates that the kids who do best with CIs are white, middle class kids. And in my fieldwork, I saw how non-white kids (usually from immigrant families) weren’t implanted as readily. I also noticed that kids for whom it ‘didn’t work’ were allowed to American Sign Language (ASL) and using ASL then became associated with failure. So I suspect that inequalities within the Deaf community are going to become more pronounced because of the CI; that perhaps poorer non-white kids will become the ASL users and more privileged children will grow up primarily using the CI.

In your introduction you mention 2 predominant narratives on deafness (medicalized and Deaf critique) and how they are inadequate in fully understanding the ambivalence and nuance involved with the families in your study. Do you see any competing or emerging narratives that is more holistic?  

Well one of the things I tried to do in the book is step back and see where both scripts about deafness come from and really examine what they argue. However, during fieldwork, it became clear that both narratives really are inadequate for capturing the nuances of families’ experiences. It’s complicated! There are so many forces at work when it comes to deaf children. The main thing that is left out of these narratives and the political debates is women’s experiences as the mothers of these kids. They are expected to do so much and to do very specific things that are grounded in medical knowledge.

As a society, our beliefs about disability are so intertwined with our beliefs about using medical technologies (i.e. the belief they should be used to ‘fix’ disability) and when it comes to deaf children we fully expect mothers to adopt such technologies. No narrative of deafness has accounted for that. So, one of the things I was trying to do was develop this idea of ambivalent medicalization to account for this. So, while I don’t have a new narrative of deafness to replace the old ones with, I can say that we have got to listen to these women because they are on the frontlines of an enormous cultural change for Deaf communities whether they realize it or not. It seems to me there’s a real need for dialogue there.

Tell me more about the concept of ambivalent medicalization. What are some examples of this concept applied to people w/ disabilities?    

Well, my thinking about this comes from both my research/academic training and my own personal experiences as well. My late partner became increasingly more disabled over the years that we were together. I remember teaching disability studies courses at the time and imploring my students to understand that disability was a social and political category. Then I would come home to my partner who was deteriorating due to cancer, but also bumping up against the category of disability in the course of her illness because she became a wheelchair user and had other impairments. I realized how desperately I wanted the doctors to be able to fix her. And I realized how hypocritical I felt about feeling that way and simultaneously telling my students disability was social, not physical. So I came face to face with the inadequacies in our models of disability in disability studies, and these models are precisely in relation to medicalization!

The medical model says it’s all medical, the social model says it’s all social/political. Well, what a false dichotomy. Medicine – it’s knowledge and practices – are social and the our social experiences are embodied and our bodies are unreliable. It was then that I started thinking about how medicalization (the sociological term describing the process of labeling something medical and using medical treatments or medical knowledge to treat and understand it) was such an ambivalent experience for me.

On the one hand, it had the possibility of making my partner well again (which it didn’t, but the hope was there). And on the other, it was exhausting. We could never get off the seemingly endless carousel of treatments that required a lot of care work at home, or treatments that created 3 other side effects that then led to 3 more meds to manage that, that then led to more side effects, etc.

So really, my theoretical frame emerged out of a deep understanding and appreciation of the caregiving role that the mothers in my study were facing. It doesn’t matter what the disability or illness is really, it comes down to the fact that we’ve got unreliable bodies and for a variety of reasons, we’ve placed medicine in the role of addressing this. And this medical system in place is complicated, wrapped up in technologies, economies, industries, human hope, and vulnerability. I was tired of reading sociological literature that only posed medicalization as a bad thing (primarily because it is powerful and can be oppressive because it turns our diverse human characteristics into things that needed to be fixed) or seeing media representations or common understandings of medicine as this purely benevolent thing where miracles happen and we shouldn’t question it. What if it was a bit of both? What if I didn’t accept either characterization?

Again, this is kind of like the scripts on deafness. I just wasn’t going to buy the argument that medicalization was bad, or that medicalization was good. It’s both. We lose certain ways of seeing when we sign on to it. We gain others. There’s good and bad to that. And I saw that in the families in my study – they were so proud! But they were so, so anxious. Deaf kids are learning to speak with the CI, not learning ASL. How will they feel about that later? I don’t know, but I suspect it’ll be a mixed bag (this would be really fun future research!). My goal with the concept of ambivalent medicalization was to bring my own scholarship on medicalization more in line with the actual experiences that I saw in the families in my study and in my own life.

I was bummed to read a quote from a mother in your introduction talking about how Deaf culture will never evolve because it’s not big enough. What have you learned about the anxieties of the parents you studied about their Deaf children and how it shapes their decision-making?

I think anxiety is huge. I am not a mother yet, but it is clear to me that the expectations of women to raise ‘perfect’ children is only increasing. Raising a healthy deaf child who uses sign language and not a CI is not the norm in the world in which I was researching.

The norm was to get a CI and learn to hear and speak. ASL was seen as a negative or a ‘failure’ that parents wanted to avoid. As a result, new norms around auditory training (the therapeutic labor that gets done alongside the CI) demanded more work from mothers. And because having a deaf child and giving them a CI in order to learn to speak is considered the norm and the ‘best thing’, the women in my study desperately wanted to do it. Who wouldn’t want to do what is told to them as being the “best” thing? Some of the moms had anxiety attacks, others approached all the care work that had to be done as a job and had a very efficient sort of attitude towards it. Everyone copes differently, but anxiety was definitely a common emotion.

Parental anxiety is commonplace. How is American society’s emphasis on material success and identity through work factors in the anxiety parents have for their Deaf children’s futures?  

American culture is indeed individualistic and focused on professional success, and this creates anxiety when it comes to parenting because we’re expected to raise little beings that will grow up and ‘be successful,’ whatever this might mean in a particular moment.

During my fieldwork, I noticed a lot of imagination work about what it means to be deaf and using sign language in that context. Parents often would talk about the CI as a way to provide the “most opportunities” for their children. And they’re talking about work, the ability have a job and to succeed. And I don’t think that’s entirely unfounded, there is a lot of discrimination.

I think we should also focus on the need for ending that discrimination. As I tell my students: do we change ourselves to match norms or do we insist that norms bend enough to include everybody? But parents also talked about getting the CI in relation to love and family – quite a few of the parents in my study talked about how their child might not ever meet someone, fall in love, get married, etc if they didn’t get the CI and learn to speak. Other parents seemed to think that if you use ASL you are completely isolated or need an interpreter 24 hours a day.

So, it seems to me that there is a disconnect or even a conflict in seeing deafness as compatible with a successful life and a real lack of understanding that being Deaf can be synonymous with having a really good life.

Based on your research, what’s your advice for parents of who recently discover their child is Deaf or has a disability on navigating the healthcare world?

Oh goodness! I would never tell any mother what she should do. I think this is so hard. I think I would just say that it is really hard and to try to step back and contextualize why you are being provided some choices and not others.

I also think it’s really important to remember that although we may engage in medical techniques to assist in living well with a disability, that this can and should be paired with fostering pride, making sure that a child knows they are absolutely amazing exactly the way they are, and connecting them with a community of others like them.

In the case of deafness, I would also really, really emphasize that the choice between a CI and American Sign Language (ASL) is a false choice. There is absolutely no reason at all that the two can’t go together. Some may say that there is, but there is no actual, neurobiological barrier to learning two languages at once. Indeed, this is the norm across most of the globe.

And I would also say: talk to d/Deaf people! After all, they are the only ones who are experts on their lives. Talk to folks in the Deaf community, find out what it’s like, talk to adolescents who have a CI and ask them how they feel about it, talk to adults, talk to other mothers, just don’t do what a medical professional tells you to do without gathering your own information. It’s not that they aren’t experts, it’s just that they are experts in their own specific field and have a very specific training. Other knowledge besides medical knowledge is also important. We need to start seeing people from various ranges of the d/Deaf experience as experts on their own lives and taking that into account too.

For parents and adults who are considering a medical intervention, what have you learned about their promise and drawbacks?

I think some of my earlier answers may speak to the ambivalent qualities that are present when we decide to engage in medical intervention. But specific to deaf children, I think the biggest issue with CIs is that it’s hard and it’s not a sure thing. You don’t get a CI for your kid and then they are magically hearing. It takes months and years of training to learn how to use it and it doesn’t always work.

It requires time, resources, and patience. I know from a lot of the parents in my study that they sometimes had to sacrifice communicating with their child in the present moment for a more long-term goal of teaching them to speak. That is, what could have been communicated easily and immediately in ASL was forgone in order to train them to speak. Sacrificing immediate communication access is a major drawback that could also been seen as an injustice.  And this is where talking to d/Deaf people helps.

At the same time, many of the parents in my study had children who did successfully learn to speak. Time will tell as to how they feel about that and I look forward to asking them in the future.

Is there anything else you’d like to share with me?

I just want to candidly point out that I talk about deafness as a disability. Many Deaf people really don’t appreciate that and instead identify as a linguistic minority. In fact, many that support the Deaf critique actively articulate that they are not disabled. In my book, I talk a bit about how both the medical narrative of deafness and the Deaf critique are ableist in that they don’t embrace disability as a valuable part of the human experience. I’m really interested to hear what people think about this rather controversial statement. And I thank you for wanting to interview me about my new book! I’m your biggest fan, Alice Wong.

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Laura Mauldin, PhD, NIC

Website: http://www.lauramauldin.com/

Laura Mauldin is assistant professor of human development / family studies and women’s gender and sexuality studies at the University of Connecticut. For Laura’s complete bio:

http://www.lauramauldin.com/biocontact/

Amazon link:  Made to Hear: Cochlear Implants and Raising Deaf Children