Wordgathering’s Assistant Book Reviews Editor, Kate Champlin, interviewed Claudia Marseille, author of the memoir, But You Look So Normal: Lost and Found in a Hearing World.
Note from Kate: Claudia and I began our interview by greeting each other and discussing her motivation for writing But You Look So Normal. In the past few years, Claudia has been reflecting on her life, on the different factors that shaped who she is now. Certainly her severe to profound hearing loss was a big influence on her life. In addition, she shared that she has a lot of older friends who have age-related hearing loss and are starting to get hearing aids. They keep telling her that now they understand what her life as a hard-of-hearing person has been like. (As Claudia reflected: with all due respect and sympathy for those adjusting to hearing aids, no, they have no idea.) This motivated her to share what that experience was like growing up.
CM: What about you? Can you hear me to any extent?
WG: That’s a hard question. I have Neurofibromatosis II (NFII), a genetic disorder that causes benign tumors to grow in the nervous system. Bilateral acoustic neuroma, tumors on both hearing nerves, is one of the most prominent symptoms. Those tumors have been removed, and my hearing nerves with them, so I am legally deaf. But I also have an auditory brainstem implant (ABI). It’s basically a Cochlear Implant for people without hearing nerves, and it helps me hear background noise and speech read.
I had undiagnosed hearing loss as a kid. The doctors knew I had a problem but never picked up on the fact that I had NFII. I did have the Americans with Disabilities Act all my life. Reading in your memoir about the time before the ADA opened up a whole other legal world for me. I was officially diagnosed in 2000, when I was 18. I didn’t need assistive devices until a few years later, but I used Communication Access Real-Time Translation (CART live captioning by a court reporter) for my graduate classes. Ball State University (in Indiana) is excellent with students with disabilities. Looking back, I honestly had it pretty good.
CM: Yeah, well, I wish all the technology that I’ve been able to use in the last 30 years was available to me when I was a kid growing up in the ’50s. I was mainstreamed in large public schools in Berkeley, and there may have been some other hard-of-hearing people, but nobody told me. I was very alone with all of this. As you read in my memoir, I had just analog hearing aids that were pretty primitive at the time. One of the major things in my life later on was digital hearing aids, which, really, I did not have for the first 45 years of my life. Digital hearing aids are so much more sophisticated, as you know. They can be programmed to different frequencies and different listening situations, and that really makes a big difference. The other thing that really makes a big difference is closed captioning, which both you and I are using big time right now.
[Kate nods.]
CM: I also use Bluetooth. I can actually use the phone for the first time in my life with Bluetooth.
I literally could not understand or get information using the phone. That was in the pre-internet days. Then, in my first job as a public policy analyst, we had to use the phone a lot. That’s when I was faking it and passing because I didn’t want my bosses to know. It could have jeopardized my job. This was well before the Americans with Disabilities Act, when things really changed.
WG: The questions I sent last week included one about the ADA. Did you notice a major change when the ADA was passed or a bunch of little gradual changes since then?
CM: I would say it was a gradual thing. I think, you know, the public awareness of disabilities in general (not just hearing disabilities but all kinds of disabilities) gradually changed as more people became aware of them and disabilities became more normalized. Yes, I think the Americans with Disabilities Act made a huge difference for a lot of people. There was also the California Deaf Children’s Bill of Rights (1994) that required reasonable accommodations on the job and in schools. We know these accommodations aren’t perfect, but it’s a huge difference. I mean, kids are now mainstreamed with an interpreter or with whiteboards where their notes are projected onto a screen, you know, and on and on. Those have all made a big difference, but I would say it’s been somewhat gradual. Even wheelchair ramps that we have now everywhere with little cutouts on the curbs, you know, that didn’t happen overnight; that happened gradually but that’s made a big difference for people with wheelchairs.
For me, it was definitely a gradual thing when I started realizing that there was closed captioning on TV, and so for the first time, I could enjoy all the programs that everybody else was watching and talking about. That was not something I had at all growing up. I could not watch TV. I couldn’t understand. The same with movies. More recently, Zoom and other video platforms have been huge because I do rely a lot on lip reading, and so, I can lip read on Zoom. And then, you know, I’m just getting better and better at using Bluetooth and so, now I’m lip reading and using Bluetooth to understand you. (Good. Thank you. You’re sitting back, so I can see your lips better.)
[Kate had been leaning forward, and her lips were covered by the closed captioning box that was also on the screen. She’d just realized.]
WG: I also had a question about passing, which you talked a lot about in your memoir. I admit I fake-laugh or watch expressions to see how I’m “supposed” to react to conversation topics more than I’d like. Do you still experience moments when it’s easier to just pass for non-disabled?
CM: Oh, I mean, I have been passing all my life. When I was younger, and a child and a teenager, and even a young adult in college, as you know from my memoir, I did not tell people or not most people. If I was at a party and somebody would make a joke, everybody would laugh, and I had absolutely no idea what was going on. So, I sometimes fake-laughed. Or if I’d be walking in a group of people down the road and they were all talking and I couldn’t understand, I would just pretend to be part of it by nodding or whatever. I definitely did a lot of passing then.
Now, I tell people. I mean everybody knows I’m hard-of hearing if I’m part of a new group. In an art class, let’s say, I will be doing the introductions, and I will tell people: “I’m hard-of-hearing, so if you say something to me from behind or in a big group and I don’t respond or don’t respond appropriately, that’s what’s going on.” However, I still pass, not nearly as much, but sometimes it’s just simply easier to pass. So, for example, in an art class I took recently, everyone’s working away, the radio is blaring, they’re bantering and talking back and forth, and I cannot be part of that. I would have to stop painting, go over to the person, and have them look at me and then I could understand. So, I pass, pretending I’m part of the group. I mean, people forget; you can tell people, but people also forget, or I’ll have a group of friends, you know, six, eight people, [and I’ll say] “I’m sorry; say that again.”
People do forget, and I mean, the advocacy that I do in terms of telling people is important, so they know. But that still doesn’t change a lot of situations, like if you’re at a party with eight people and people are bantering and talking away. Even though I’ve told them, it doesn’t necessarily make it easier for me to understand what everybody is saying. It does explain to them a little bit. (Like “oh, she’s acting a little weird, that must be what it is.”) I will remind people, and people are always gracious about it. It’s not a big deal, but just because you’ve told people doesn’t necessarily make the actual situation any easier.
There are a lot of things I simply don’t do because it’s too difficult, like going out for dinner with ten people in a noisy restaurant or going to a jazz club for dinner with friends. They’re going to want to talk and listen to the music, and I’d be happy to listen to the music, but I cannot talk with loud music going on in the background. No, there are just simply things that I don’t do. I don’t get myself into those situations as much where I have to pass. The passing is both convenient and at times painful because you’re not really being true to yourself.
I remember when my daughter was like six or seven years old. I would drop her off at school, and the kids were going to their classes, and then, some of the parents would stand around and talk on the playground. This was still before I had better digital hearing aids, but even with those I would have had trouble. So, you know, there’s eight [people and I’d try] to break into that group of friends, and it was difficult, and so, again, I would pass by pretending to look like I’m part of the group. Occasionally, I would find one person standing next to me that I could talk with one-on-one. That would, of course, make a big difference, but group stuff has always been difficult. As I said, I just don’t put myself in those situations as much now as an adult so it’s less painful than it used to be when I was younger.
[We discuss American Sign Language and Signed Exact English. Then we talk more about how we have accessed accommodations and how we have addressed communication needs with people we know.]
CM: And do you tell people what they can do to make it easier for you to understand them? In other words, do you do some self-advocacy for yourself in that moment?
WG: Yeah. I usually open conversations by telling people that I’m deaf and that I rely on speech-to-text software. I tell people, “If I’m looking at my tablet, I am listening to you.” Most people understand that. Of course, people do forget. Before I had the speech-to-text software, I had to ask people to write things down. One person handed me a piece of paper and a pencil when I asked that. Like, is that supposed to help me understand you?
CM: Interesting. Well, I’m amazed about that technology with your tablet. That’s quite wonderful. I mean, I am not needing to use that because I do still have enough residual hearing. I’m totally deaf without my hearing aids. But with my hearing aids, I do still hear enough that in a quiet situation I can understand people and I’m a really good lip reader.
I would say the main thing is I let people know I’m really hard-of-hearing. I let people know: “I will not understand you if you are speaking to me from behind. I will not understand you if you’re not facing me and enunciating while you are looking at and talking to me.” It’s amazing how many people will talk and cover their mouths. The other thing that gets me is if somebody wants to say something kind of exciting or whatever, they want to whisper, and they whisper in my ear. Or when we’re in a movie and they want to make a comment to me, and they whisper in my ear; that does not work. I have to constantly remind people that this does not work. I tell people I’m severely hard-of-hearing, but they don’t know what the full implications of that are or how that translates into actual life situations. Like, whispering in my ear in a movie theater is not going to work.
Then the other way of self-advocacy is, as I said earlier, I just don’t put myself in situations that don’t work, you know. I like theater. I love literature. I read a lot. I love plays in the theater, but I can’t go to a play unless I’ve read the script beforehand, and I know what the story is. Then, I can kind of follow along. So, I will get an invitation in the spur of the moment. (“Oh, I have an extra ticket to Berkeley Repertory Theater” – which is a very good theater here.) But I can’t go with them because I haven’t read the play, or it’s a contemporary play and the script is not yet available for me to buy or download. So self-advocacy is that I simply have to say, you know, I can’t go. Or there’s a movie that I want to see, and I have to wait until it’s streaming so I can watch it on the TV with subtitles. I can’t go to a movie theater. I just don’t do that much unless it’s a foreign film with subtitles. And then they say, “Oh, I guess I didn’t realize. Yeah, that would be a problem, wouldn’t it?”
WG: I also had a question about changing cultural contexts. Do you think cultural changes—like cultural differences between the U.S. and the Israeli kibbutz where you lived for a time—made acceptance easier? By the way, if I mispronounced “kibbutz,” I’m very sorry. One of the undiscussed facts of deafness is never knowing how to pronounce anything.
CM: Yeah, I mean, I don’t know. I haven’t lived abroad enough to know how other cultures are. I assume that Europe is kind of like we are. Maybe they’re a little ahead in terms of accommodations. I don’t know, and when I was on the kibbutz in Israel, I was 17, 18 years old. That was a long time ago, in 1969. I was passing. I mean nobody knew really, but everybody was speaking English among the volunteers that I worked with because that was the communal language we could communicate in. But because it wasn’t a language they knew well (because they came from Germany or Italy or wherever), they would speak more slowly and deliberately, and I could understand, or I could understand better. Whether the Israeli culture as a whole was better at accommodations, I have no idea. That would be an interesting question, you know, different cultures, Asian cultures, South American cultures, you know: where are they at with all of this? I don’t know, but I think we’re at a time where people with differences of all sorts are not necessarily being accepted. With the new administration, it’s hard to know where all that’s going to go.
WG: I agree that the new administration may set us back a lot. I already know people who are passing at work again, because they have gig jobs. If their bosses don’t like having disabled employees, they can find an excuse to fire them or not to hire them in the first place. There will be ten other applicants for the job by the end of the day.
CM: Uh, interesting. You had also asked a question about isolation. I guess I just want to say something about loneliness because I think that is a huge issue for people with hearing loss. They are cut off from groups. Loneliness is an epidemic in this country and not just among the hearing community. The Surgeon General has written about it, in fact, and so I always, when I’m giving book talks, encourage people to get their hearing checked and wear hearing aids and wear them all day long. Or Cochlear implants or whatever accommodations you need, make use of them so that you can connect more easily with other people because that will help overcome loneliness and make it possible to connect with the people that you love.
WG: There was one other thing I wanted to discuss. In your memoir, you talked about the value of silence. I really liked that because you provide an alternative to medical and cultural models. So many medical and social models take as a given that lack of hearing is a loss. Do you feel that silence has affected your art in any way?
CM: When I was a child, I often didn’t wear my hearing aids when I would come home from school. It was great to take a break from all that noise and input, and so, in the afternoons when I would be reading or playing in my room, I often didn’t have my hearing aids on. It was great to just retreat into words. I also used to turn my hearing aids off during a scary part in a movie. I mean, even as an adult when something scary was going to happen [in a movie], I would turn my hearing aids off. I would see what was going on, but one sense would cut out and just calm me down a little bit. When I anticipate a lot of really loud noise, which hurts my ears, I will turn my hearing aids off. It’s harder to do that now because our lives are so busy: the doorbell is ringing, the phone is ringing, something is always happening, I need to talk to somebody. In the evening, you know, my daughter is grown and gone but my husband is here. To turn off my hearing aids wouldn’t work so well if he wanted to talk with me, although he is an introvert, and sometimes, we agree that we’re just going to read and be quiet. When I was younger, he would often travel on business, and at night, I would take my hearing aids off and not hear anything. Friends would say “Isn’t that scary for you? What if a burglar comes in? You wouldn’t hear them.” But what I don’t hear doesn’t exist. When I turn my hearing aids off, I’m not afraid; there’s no problem.
When I work on my paintings (you asked a little bit about that), sometimes, I turn my hearing aids off so that I’m in silence while I’m working. Then, I can see what wants to emerge, what wants to flow in terms of my artwork. The other way I paint (which sounds kind of odd to people), but I will have the radio on and with the Bluetooth connection, I can hear the news or an interview or something. That keeps my left brain busy with what’s going on on the radio, and then, with the right brain, I can just paint without any judgment and all of that stuff that can hamper the art process. So, sometimes, that is an easy way to make things flow. So, I go back and forth between those two ways of working (in total silence or with the radio on), and in both cases, the work of my artwork is to let what-wants-to-emerge emerge and to go with that impulse and see where it takes me.
WG: Did being hard-of-hearing or disabled have any other effect on your art?
CM: Yes. So being weak in one sense, I think, has definitely strengthened my visual sense. I’ve been visual all my life, and I notice things, maybe, sometimes, before other people do. I’ve always been a very visual person, so that has probably affected my artwork. Being hard-of-hearing has not affected my artwork in terms of the content. That’s the work itself. I’m an abstract painter, and so, I sort of paint interior spaces. It doesn’t really have anything to do with being hard-of-hearing per se. Does that make sense?
WG: It does. Is there anything else that you wanted to mention as we wrap up the interview?
CM: Well, I think I mentioned earlier that I think a lot of people don’t realize how lonely hearing loss can be for people and the sense of separation from other people. I spell out in my talks that that was an issue for me growing up. I think a lot of older people with hearing loss feel lonely and depressed and cut off. So, to really look out for that is something I mention to people.
You know, apart from, also, just all the changes in technology that have made a huge difference in my life and in the lives of others that I think a lot of people take for granted, the people who don’t have hearing loss are not aware of what a big deal this is. They don’t realize how important digital hearing aids, closed captioning, Bluetooth, various captioning devices, and all of the things we talked about: assisted listening devices, Cochlear Implants. I mean, those are all huge innovations.
[Kate and Claudia end the interview with Kate fan-girling about Claudia’s awesome life. Kate thanks Claudia for the opportunity to converse together.]
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About Claudia Marseille
After earning master’s degrees in archaeology and in public policy, and finally an MFA, Claudia Marseille developed a career in photography and painting, a profession compatible with a severe hearing loss. She ran a fine art portrait photography studio for fifteen years before becoming a full-time painter. Since 2001 her paintings have been represented by the Seager Gray gallery in Mill Valley, CA. Her memoir won a Gold Medal from the Independent Publisher Book Awards for Best First Book in Non-Fiction, and also a starred review from Library Journal. You can find out more on her author website: www.claudiamarseilleauthor.com. She has played classical piano much of her life; in her free time she loves to read, watch movies, travel, spend time with friends, and attend concerts and art exhibits. She and her husband live in Oakland and have one grown daughter.
About Kate Champlin
Kate Champlin (she/her) is a late-deafened adult and a graduate of Ball State University (Indiana). She currently works as a writing tutor and as a contract worker for BK International Education Consultancy, a company whose aim is to normalize the success of underserved students.