It’s so important for all of us in the community to respect each other in the choices we make for living with hearing loss and deafness -Nancy M. Williams
When my audiologist calls me, it’s certainly something urgent or important or both. I felt relieved when she said she was calling just to find out if I would be willing to provide an interview for a research study pertaining to hearing loss. By this time in our journey, we felt indebted to so many people who had been graciously generous with their time that honestly I do not see ourselves ever saying no to anyone wanting to hear our story. Plus this seemed to be for scientific research which further piqued our interest. This is how I met Nancy. A quick google search left me intrigued and impressed. She is a Harvard and Stanford graduate, founder and president of the company called Auditory Insights that she currently runs and is an amateur concert pianist. In short, Nancy checks off many tick marks which we may associate with a highly accomplished individual. And yes, she also happens to have hearing loss. I immediately wanted to know more about her, her story, her life, her chaos and her calm. So once we were done with the research interview, I thought I would check if Nancy would oblige to speak to me. And so she did. I need to thank Nancy not only for her time but also for forgiving the rookie mistakes that I made as a first time novice interviewer. Without any more words, below are my exchanges with Nancy.
Can you tell me a little bit about your life experiences as a person with hearing loss?
I was born with a progressive hearing loss, from a mutation in the Connexion 26 gene. After my kindergarten teacher told my parents to have my hearing tested, I was diagnosed with hearing loss. The audiologist recommended a hearing aid, but my parents refused. They were afraid of social stigma. I don’t blame my parents for that. They did the best that they could. And you know, those were different times then. But I think even now that stigma is very much present in society. It’s a force that I think all of us in the community need to be aware of.
I had to work extra hard in school without the hearing aid. I had to turn around and lip read people when they were talking in the back. When I hit 7th grade, it got really tough. I was in pre-algebra and the teacher would turn his back to the classroom, scrawling equations on the blackboard, and I couldn’t hear him. My parents finally broke down and had me fitted with a hearing aid. That made a lot of difference for me going forward.
When I was in business school, I actually got two hearing aids for the first time and that helped a lot too. I went to Harvard Business School and the way it works is that the majority of your grade is based on classroom discussions. My only accommodation was a front row seat. Before classes started, I went in and looked at the classroom and asked for a seat where I could turn around and read people’s lips while they were talking. But I should have asked for a lot more than that, and I am sure it would have been granted.
So when you have hearing loss, it takes more work to function in everyday society. Often after I have a zoom meeting, I need to watch the recording to make sure I got all of the points. I can’t always ask people to repeat themselves, and sometimes there are technical terms. So I will watch the meeting again. It’s kind of a double duty. The silver lining is that I think I do a very good job of understanding what my clients need because I’m essentially listening to them twice. I really see what they want out of a project.
I like having my own company because I get to structure my day and the company operations around hearing loss. I arrange my interactions so that I have the accommodations that I need. At this point I can’t really do more than three hours of calls a day because the auditory fatigue sets in.
I don’t know if you want me to talk about the positive aspects?
Yes, of course. Please tell me what you think have been the positive aspects of you being a person with hearing loss?
I think one of them is that the community of people with hearing loss is quite wonderful. I remember the first time that I went to a Hearing Loss Association of America Conference, I felt elated for the entire conference. When you step into a room full of people with hearing loss, immediately this thing that you’ve been carrying around is off the table. It’s no longer an issue. Everyone gets it. I don’t have to worry that I am looking too long at people’s lips when they talk. There is this intense feeling of belonging.
And I think another benefit of my hearing loss is that I am a very, very good listener. You know, I talked about how, for example, I really understand what my clients need because I watch the recordings of our Zoom meetings. So in a way, my hearing loss has strengthened my business offering.
There’s a lot of people who go through a midlife crisis, where they search for work that feels significant to them, but I’ve always known what that is. Once I was out of the closet, the hearing loss closet, (which did take me a long time), it was very clear where I was home. When I am doing an Auditory Insight project, and I am interviewing say a neurotologist or a parent of a child with hearing loss, it’s like nothing else matters. I am so incredibly interested and invested in the work. That’s a really great feeling, and I think having work that you find significant is one of the definitions of happiness.
So you are a Stanford and Harvard graduate. One of our early worries was and still in part is what that experience is like for someone with hearing loss. College and school is not just about the academic experience but it is a whole consolidated experience of academic and social life. Could you tell me what that experience was like for you?
That’s a really good question. I think my academic experience was definitely more difficult than if I had a normal audiogram, that’s “quote, unquote” normal. I remember I had a lot of trouble with Calculus III as I just could not hear the teacher. His voice was heavily accented. I think if I had asked for accommodation, I would have received it. So a lot of it was my inability to speak up and ask what was needed.
Socially I don’t think it was as big of a deal for whatever reason. I had a lot of fun in college and I made good friends.
Why do you think that socially it was not a problem? Would you hang out with hearing people and you didn’t think you were missing out on things? For example, last night my husband and I went out to a restaurant for dinner, and it occurred to me that if Shreyas, my son was here, he would probably miss out on a lot of conversation. Did those things bother you?
You know, it’s really funny, because the name of the game, in terms of the way I was raised, was to fit in and to hide my hearing loss. So it wasn’t until I was in my mid-thirties that I finally admitted to myself that I couldn’t hear at the movies. I’m sure when I was younger, the movies were easier. But as I got into my twenties, hearing dialogue got harder and harder, and I would just sort of fake along with it. If there was something very critical, I would ask a friend or my husband at the time. And people would repeat for me. So I just sort of accepted in an unconscious way that the movies would be different for me.
I’m glad that you asked the question, because I don’t think it was accurate for me to say that my hearing loss has had no impact socially. Of course it did. I wasn’t telling people what my situation was. My hearing loss probably resulted in my appearing to ignore people. A friend of mine at business school told me several decades later that at first he thought that I was kind of stuck up because I would walk past him in the hall, and he would say hello, and I wouldn’t answer. It’s, of course, because I hadn’t heard him. That probably went on a lot more than I realized.
Once I shared a hotel room with a friend who has a hearing loss about the same as mine or a little worse, and it was very unnerving for me when I would say something to her when her back was turned, and she didn’t respond, she didn’t even move, because she hadn’t heard me. I realized, well, that’s what hearing people are experiencing around me.
Since that time, I’ve done a lot of research on the stigma against hearing loss. And there’s this wonderful researcher, her name is Margaret Wallhagen, and I quote her all the time. She’s done some really interesting research into stigma. There are three basic categories of stereotypes of people with hearing loss. And they’re tough stereotypes. First, that we are disabled, second, that we are less than whole, and third, that we are cognitively impaired. By the way, these stereotypes are directed towards adults. But I’m sure there are versions in the children/teen world as well. My feeling is that people will go to great lengths to avoid these stereotypes, because they’re damaging. I think for people to think that I’m somehow not whole or cognitively impaired is really scary. When we seek to hide our hearing loss, sometimes it’s because we’re trying to avoid those stereotypes, which I think are still out there. It’s definitely getting better, but they’re still there.
When I present to people with hearing loss, I explain that the worst kind of stigma is internal stigma. We may have only had one or two experiences with what I call external stigma. In my case, in junior high I was kicked out of a lunchtime group of girls because I couldn’t hear secrets. It was a searing experience to be ostracized that way for my hearing, and I internalized it. As people with hearing loss, we need to come to terms with those experiences that we’ve internalized and understand that it is worth taking the risk to let people know who we are completely.
Talking to you made me realize that although we have a long way to go, we’ve also come a long way. I definitely know that there are still these perceptions, and I will be honest, learning about my son’s hearing loss was not an easy thing. The thing that you talked about ‘less than whole’ was a big fight to fight internally, and one that is not completely over. I think our internalized biases really change when we are around somebody who is deaf and we can see for ourselves that they are not less than whole. If growing up, I had friends who were deaf, or if I had met deaf adults, I would probably have had an easier time coming to terms with my son’s deafness. In general, if you’ve not seen something up close it is scary. The worry manifests from thinking if I were deaf, how hard my life would be because I am so dependent on my hearing.
I think you’re right that a lot of times the hearing world is acting out of fear, or just lack of knowledge. I wrote once on my blog that every single time a person with hearing loss opens up about their condition, the entire community takes a small step forward. That doesn’t mean that everyone with hearing loss or deafness has to do that, but for people who feel up to it, it’s very useful for the community.
There is so much talk about identity, people identifying as deaf, people identifying as a person with hearing loss, people who sign, people who don’t sign, people who have cochlear implants. I wanted to ask where you are on the spectrum? Are you like I don’t have to identify myself as anything? This is what I am, that’s it and I don’t want to have anything to do with all of that controversy?
If we don’t understand other people’s choices and support them, we all lose. Typically, when I introduce myself, I say that I have a hearing loss. My pure tone average is almost at moderately severe, to be very technical. I wouldn’t feel comfortable actually using the Deaf descriptor unless I had a PTA that was severe to profound. Ultimately it’s up to every single person how they describe themselves, just like it’s up to them in terms of what kinds of accommodations they seek, and what kinds of treatment and amplification. It’s just that every situation is highly individualized.
Did you ever think of learning sign language?
I would love to learn sign language. It’s definitely on my bucket list. I have learned that Sign Language is a highly developed language. I guess people used to think that it sat in the gestural part of the brain with hand motions, but it actually sits in the language centers just like any other language. I think there are some benefits to Sign Language that English would never be able to match. When I present at the Hearing Loss Association of America, they don’t always have an ASL interpreter for every workshop. If I don’t have one assigned to me, I’ll go find someone out in the hall who I know is an ASL interpreter and ask them to come in. It just feels very inspiring to have this beautiful language being employed at the same time that I’m speaking English.
Interesting. Do you have any friends with hearing loss or who are deaf?
I have a lot of friends with hearing loss. And yes, I also have friends who identify as deaf and who use sign language. I met some through attending the Hearing Loss Association of America conventions, but then I also meet people through my work.
You know, you often wonder what your kids will grow up to be like and with Shreyas everything is absolutely new to us. With a typical kid, most people I know, all grew up like that. We know what it might look like, but I am always wondering what Shreyas would be like, what his experiences will be like, what kind of personality he will take, what will be his opinion on all the decisions that we are making for him. So I talk to different people who are coming from different backgrounds and bringing different perspectives. He’s been doing really well so far, we’ll see how it goes forward from here.
Oh, that’s wonderful. I think the main thing is that you obviously love him very much, and you’re putting a lot of time and thought into it. With parenting, it’s more about inputs than outputs. If you put in what’s required, it will turn out okay. I think in general being a parent is sort of like you’re in the presence of this mystery, where you don’t really know what your child is going to turn out to be like, and it can be unsettling, but it also can be exciting, too.
All right, Thank you so much, Nancy. And you mentioned you have a blog right?
It’s called Grand Piano Passion (https://grandpianopassion.com/) . It’s an online magazine of which I am the founding editor. We didn’t get into this, but I’m also an amateur pianist.
I did Google search your name when we spoke for the first time. I saw the information about all of that and too bad we only scheduled 45 minutes for today. I know you are very busy so we didn’t get to talk about a lot of other things that I would have loved to talk about but maybe another time. Thank you so much for your time and sharing your life experiences.