Hearing Loss LIVE! Talks with Katherine Bouton

Adapting to hearing loss can be overwhelming no matter how you got here--suddenly or progressively. Hearing Loss LIVE! wants to help you take control of your hearing loss. Because we know that when you do, you will live more fully with fewer limits. We can help improve your communication obstacles in your day to day life. 

Which is why we like to bring connections that can help you LIVE your life not your hearing loss. Meet Katherine Bouton retired NY Times Editor, Author, blogger and President of the New York City HLAA Chapter.

Check out her latest blog at: katherinebouton.com 
Looking for online support groups, Hearing Loss Association of America has many chapters nationwide meeting online. Check out the New York City Chapter for upcoming events: hearinglossnyc.org

Join Hearing Loss LIVE!  the first Tuesday of every month for our Talk about it Tuesday where topics can range from why #captionsmatter how to spread #hearinglossawareness but every #TAIT is about #selfadvocacy with #hearingloss 

Transcript

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Hearing Loss LIVE! talks with Katherine Bouton.

Julia: 0:04

Good morning, welcome to Hearing Loss LIVE! Today we are going to sit down with known author Katherine Bouton. And she is also a New York City chapter leader for Hearing Loss Association of America. We love connections, we tell you that often and we're going to keep telling you that and connections are what help us have better outcomes with hearing loss. We learn from each other. There's all sorts of new information that you can share. I kind of say that because a person once said to me, the other,wasn't too long ago, you know, I, I don't know what I could share, because I've been had my hearing loss for so long. And I said, Well, that's what you can share. You know, what did you find out as a kid? No, my parents took care of that. But when I became an adult, I found out this is what they took care of. And, and it was a surprising moment for the person. Okay, I'm rambling already. And it's like five seconds into this. Anyways, back to what we're doing. Connections are important to us. I would like Michele Linder to talk about how she came about asking, can we have Katherine on I think this will be a really great podcast, and we looked at her material and we agreed. Michele, tell us more about your thoughts on the connections with Katherine.

Michele: 1:30

Right. You know, like everyone else I became aware of Katherine, when "Shouting Won't Help" came out and it got a good reception everywhere I am. So I manage the public Facebook page for the SayWhatClub. And so when Katherine started her blog, I began sharing her her blog articles when they came out, and I followed her through the years. That way, I'm gonna let Katherine take it over. And she can tell us a little bit more about herself. And she can start off on whatever subject she wants to focus on.

Katherine: 2:10

Okay, thank you. So the book, "Shouting Won't Help" was published in 2013, and when I was, in my early 60s, I first lost my hearing in one ear, sudden hearing loss overnight in my left ear when I was 30. And I had all the usual tests that you have when that happens, because you really have to make sure you don't have a tumor or some serious disease. But I had nothing. And I could hear all right in my right ear. And so I just went on for the next 20 years, without a hearing aid. And when I was in my early 50s, my right ear had started to deteriorate too. So I did get hearing aids then. And they worked for me for about six or eight years. But my hearing loss is progressive. I also think that it responds to stress. That stress makes it worse. And I worked at the New York Times I was in a zoo there. And so it was very stressful job all the time. But what after I, I got the hearing aids in a year after 911, which was you know, and I'm in New York City. So that was just all togethers, really stressful period. My daughter was going to school downtown. So that led to the hearing aids and then I had a further big drop off in 2008. And it was also a very stressful time. My parents were sick. I had moved into a new job at the time that was really hard. And so that also happened almost overnight. And I think in Shouting Won't Help I describe going to my ENT on the subway and just feeling overwhelmed by not being able to hear anything, and at the same time being overwhelmed by noise. I'm sure that's familiar to all of you. So I, it was another year before I got a cochlear implant, which I was still working on. I was still under a lot of pressure and I'm, it wasn't really the right time for me to get a cochlear implant because of that. I just didn't have the time to devote to learning how to hear with it. I have since and I love my cochlear implant. I feel completely unbalanced when I'm not wearing it. So now a cochlear implant and a hearing aid. But the main thing is that when, when I first lost my hearing in 200- seriously in 2009 and then I left the Times at the end of 2009, I didn't know anyone who had hearing loss. I didn't know anything about hearing loss. I didn't know anything about support groups.There were no books that I knew of. There were a few and so, you know, there I was after working my entire adult life with free time on my hands. So I started thinking maybe I should write about hearing loss. And I started out with one chapter about my difficulty keeping the cochlear implant on my head, which, eventually it was called wig tape, like holding a wigon to your head, and I forget what the rest of the title is, but, so I didn't think anybody would want to read this book. Because I didn't know anything about hearing loss. And there weren't any books about hearing loss. And I figured why would anybody want to read about it. But it actually just really struck a nerve. It turned out there, you know, there are 1000s of people out there just like us, you know, not old, older, but not old yet. And, you know, try to figure out how to live with what for me is really a disability. And I think one reason the book did well was because there were so many people in the media who couldn't imagine that one of their immediate colleagues, which I could have been anyplace I worked, could have, could not be able to hear and still get along in the workplace. So I don't want to ramble either. Do you want to ask questions?

Chelle: 6:38

I do have a question. Did you say that you went 20 years without a hearing aid when you could have used one.

Katherine: 6:47

Um, you know, I don't know, given that was 1977 that I lost my hearing and hearing aids back then we're not very good. I had my hearing in my right ear was excellent at that point. So I'm not sure hearing aid really would have helped me back then. And in fact, the the ENT, who did all the tests gave me a prescription, but he didn't encourage me to go ahead with the, with the hearing aid. When I did get a hearing aid, you know, they were the nice little Widex digital hearing aids, one red, one blue in each ear. They, they were great. I mean, it was just, you know, it was a revelation of what it was like, really to be able to hear again. But it was short lived, because my hearing loss, as I said, is progressive. And it gets to the point I think with many people where a hearing aid and the cochlear implant are not enough and you need other accommodations, like the captioning that we're looking at right now. I don't think I'd be able to follow this without the captioning.

Michele: 7:55

I just want to say your description is great where you said you would be on the subway and you were anxious about not hearing. But you were overwhelmed by the noise. I think that's one thing that people don't understand about hearing loss. We can hear, we just can't hear what we need to hear. [yeah] So that was the first thing that struck me about what you said. And you know, I started going to the audiologist and ENT as an adult in 1980. I was diagnosed in my childhood and kind of left on my own to figure it out. And back then, and you said it was 1977 for you, back then very few audiologists were practicing, if any, were practicing patient centered care. And that was a huge problem. Unfortunately, I have severe hyperacusis. So I wasn't able to find benefit with hearing aids, though I've tried them for decades. But yeah, I'm not surprised that in 1977, you didn't really get a lot of help. Back then.

Katherine: 9:03

Yeah. Also, though, I was much more open about it back in 1977 than when I was as I got older, because I was 30. And so there was no way-- I think hearing loss, one of the stigmas of hearing loss is the stigma of age. And I think that's a lot of the reason why we don't want to talk about it. Why we don't want to ask for accommodations. Because correct or not, and I think it's not hearing loss does not affect just old people. It affects people across the, across the age demographic. And I think that figure is that 60% of people with hearing loss lost their hearing before they were age 55 or 60. They didn't lose all of it, but they began with their hearing loss and those years. So I of course I The hearing loss hearing loss is progressive, especially age related noise related hearing loss. So what we see, the people with hearing loss generally that we see are old because they're the people who've had it long enough to, to get hearing aids or even cochlear implants. But I really I always try when I talk to people, talk to groups to emphasize that there's a lot of hearing loss out there and people in their 20s or 30s, or 40s. But it was easier for me to deal with back then. I just joked about it. I said, "Oh, I'm deaf in one ear." And because I was 30, so nobody thought, you know, that it was because I was old.

Chelle: 10:39

I started wearing hearing aids when I was 23 years old. Like we said earlier, I had a hidden hearing loss as a teenager. And it just got a little bit worse, I think every year until I was on the phone with my mom one day. And she said, and she had to repeat one too many times. So she said,"would you go get some hearing aids, please." And of course, she thought hearing aids would solve the problem, but it really it helped. But they didn't really and that was back when it wasn't the analog hearing aids and I worked in a salon with blowdryers and hairdryer. So the speech above all that noise just it didn't even hardly come in. And you know, I had people asking me, "are your ears on?"[laughter] "Turn up your hearing aids." And I didn't know how to describe it. And of course, being a hairdresser in a snowbird area near Arizona. I saw a lot of people with hearing aids, and they didn't know

Katherine: 11:45

Yeah. I never talk to the hairdresser. I always tell anything, either. her right from the beginning,"I'm not going to be able to hear an word you say." And I think actually, sometimes it's kind of a relief for them. Because most of the time, you know, the clients want small talk. So.

Chelle: 12:05

Yes, it was a relief when I've had people who sat in my chair who were hard of hearing and said that. It was like, ooohh shut down all small talk. It's- I was so happy with that. But I faked it for many years. Because I thought people would be annoyed with hearing loss. And it didn't seem like anybody understood hearing loss and at 20 something either.

Katherine: 12:27

Yeah. I thought I had hidden my hearing loss pretty well. And after I left my job, I talked to a few people I had worked with and I said because I was by then more open about it. I said what you know, what did you notice about me? And one person worked with very closely said, especially about the last years I was there. "Well," he said, "I knew something was wrong. I didn't know what. I didn't know whether you were burned out or if there was some other thing going on your life." So I'm sure also he was thinking I didn't know whether you really were just actually had become kind of stupid. That-- faking it just doesn't work no matter how well you think you're doing. So yeah. Can I add something to that? Now I use almost always in conversation with people in virtual meetings, if there's if there aren't captions, I always use my iPhone app, which is called Otter. I use it in person, I put it on the table. And so I'm not completely deaf, I can hear you know enough that if I just keep an eye on the captions, I can actually really follow the conversation. So that, that app Otter.ai has made a huge difference in how I interact with people. There's a similar app for Android phones, I'm sure you know about it called Google Live Transcribe. They both provide a transcript, which is really great if you're talking to somebody and you want to remember what was said. And the other app that's may change my life entirely is InnoCaption which is captioning for a smartphone. I didn't talk on the phone for about two decades. Well, no, I had to talk on the phone when I was at work. So for about 12 years, until I got InnoCaption. And now I talk on the phone all the time. It's really fun. It's it's a great way to communicate. There's a reason it's lasted as technology. And I also use FaceTime a lot because it really helps to be able to read people's faces.

Julia: 14:53

I think there's a new FaceTime live transcribed. Am I crazy? Is that's rolling out?

Katherine: 15:08

I'm not aware of it. But that would be useful. I mean, I can hear my daughter, I can hear my sister. But I can't always hear everybody. So--

Julia: 15:19

I just realized where I heard it. So I try to attend the FCC, Federal Communication Commission, Disability Advisory Council. And Apple has announced they will have captioning on their FaceTime coming out. I think it's coming out-- I don't remember what month. Katherine; Oh, that's great. That's perfect. So it'll be fun. All ways possible, right? I love anything that helps everybody have the ability to communicate with their type of communication needs. We need all of it. And the more options, the more quality continues to grow, because quality matters, right? Quality captions matter. So I love that we have all those options, and I forgot what I was going to say. So questions? I can read your lips a little bit, something something hairy. That's what I saw

Chelle: 16:22

Was possibly going to be something about InnoCaptions?

Julia: 16:26

No.

Chelle: 16:28

We love InnoCaptions.

Julia: 16:29

I think it had to do with bluffing. Because my grandmother was deaf in one ear, as a child due to some, a medical situation. Learned to lipread by the age of nine. And had bluffed her way through most of life when it came to hearing. Because she was proficient lipreader. And, but later when eyesigh-- I look back now and I realized eyesight was involved, I didn't then, she, she really, the bluffing got her in a lot of trouble. Like, had I not been involved with Division of Services to the Deaf and Hard of Hearing, had I not been involved with Hearing Loss Association of America as a captioner, they would have diagnosed her with dementia. And it was one day where I'm like, I'm not seeing what you guys are seeing what's going on. And I realized she had lost hearing in her good ear to the point where she was hearing nothing. And she she was just faking it. And it got her in trouble. Which the reason I bring this up. And I ask this Katherine all the time, and there's I don't know the answer, and I don't. But I My question is, all those people who don't think they need to know about hearing loss, maybe because they have never experienced it, or they don't have a family member with it, I want to know how we educate them, because I found it so important in my daily life, to just know, there might be something different with as a hearing partner, it just, you know, I can't, Well, I'd love to tell everybody go become a CART provider, right.

Katherine: 18:25

I think about this all the time, too, because basically in you know, organizations like the SayWhatClub and the Hearing Loss Association, we're speaking to the converted. And one of the things about my first book"Shouting Won't Help" was that it, I think it was read by people who didn't have hearing loss who were interested in it as a memoir. Just read it as somebody who worked at the New York Times. So I had some outreach there that was that I don't have ordinarily with my blog that I don't think I've had had with my other books. But I think another thing that's helped us a lot is the past two and a half years with COVID. Because I think people, I think-- there's two different ways that it helps us. First of all, people realize how hard it is to talk, to understand what somebody's saying when they're wearing a mask. Even people who have very, very good hearing still have trouble when they're wearing masks. And I can't tell you the number of people I've said to, "well, you know, I can't really hear you because I'm I'm pretty deaf" and they are going to use my caption app I have and they say, "oh, so am I," you know, but obviously they've never done anything about it. But the other thing I think that's come out of this period is two other things. One, I think really, some really good advances in technology. Zoom came out with the captions, I think at least partly in response to, well first of all, how widely used Zoom was being used and, but also because people were using the captions, and I'm sure, you know, I'm sure Zoom had a way that way to know that. But most of the other technologies that I use, like Otter and InnoCaption have also just, you know, they become much more standard, they're much more refined, they're really excellent apps. And the third thing I think has, the good that's come out of the pandemic is that we, people with hearing loss have learned to advocate for ourselves. You know, we, we can no longer pretend that we can hear what's going on, because we actually can't hear any of what's going on. So we have to be open about it, and we have to say, you know, as Michele did, I guess it was Michele was talking about being in the hospital. We have to ask for CART, we've learned that we have to do that. Those little screens that are now in a lot of doctors offices with, that translate languages, also provide CART/captions, you know, you go into a doctor's office, you don't have to have some person come in with their CART machine and set up basically, they just get the CART operator on a call. So people have realized, I think that it's really worth being open about their hearing loss. And I think every time you ask for an accommodation, you're basically advocating not just for yourself, but for all people with hearng loss. And I think probably, that's the way we're finally going to, you know, get those malingerers out there into the hearing loss world. Also, we're an aging population. And so demographically, we'll just be using more, more hearing devices too. And, you know, the over the counter hearing aid act is finally supposed to be finished, the regulations are supposed to be out this summer, I believe, next month. And who knows, you know, what's going to happen with those, whether they're going to be taken up by people. But it is going to give people a chance to go and take care of their own hair. And they don't have to take that big first step of going to an audiologist, they don't have to figure out whether they really want to pay, you know, $3,500 for one hearing aid, much less$7000 for two. And I just think, I think we're in a good period now. Where there's just much more awareness of hearing loss, there's much more access to devices that can help and apps devices and apps that can help you with your hearing. And I also think that, I forget what I was gonna say, what was my third point? I just think that, you know, it's certainly a better period to have hearing loss than it was when I when I lost mine.

Michele: 23:09

You know, I think Chelle a Julia and I a big reason we started Hearing Loss LIVE! was to help people and ways that we needed help way back when, when we didn't know anything. And you become good self advocates and you want to pass that information along. I know the new director at the Deaf/Hard of Hearing Services Division here said most of her clients are hard of hearing. They don't consider that they have a disability. And they don't know that the ADA applies to them. And with the hard of hearing community, we're just not as cohesive and knowledgeable about things. And I think that's one thing we want to do here is kind of start hard of hearing community movement where we are more cohesive, and we spread out awareness among each other in very different ways. And advocating for yourself is a good way to educate the public. And it's a good way to make things better for those people who come after you. And I've been a captioning advocate for over 12 years now going on 13 years, and I've seen so much change within that time, but there's still a long, long way to go. So it's great that you're bringing attention to hearing loss with your books and your blog and all that you're doing.

Katherine: 24:34

I also advocate for captions. I advocate for assistive listening systems, but I think captions really are, you know, as somebody, I think Arlene Romoff, author, put the wheelchair ramp for the deaf. They provide access for everybody. Whether or not they have hearing aids. Whether or not they have a telecoil, and, but they're also useful to people who for whom English isn't the first language. There's all sorts of places where captions, you know, are really appropriate. I just want to amend something I said, I said, you know, that people might want to buy over the counter hearing aids without going to an audiologist, I really don't recommend that I think you should go to an audiologist to to have a good hearing test. But then, you know, if you have the hearing, kind of hearing loss, mild to moderate, that age-related hearing loss that over the counter hearing aids can treat effectively, you know, go ahead and do that.

Julia: 25:34

I agree with that. Because I think we've talked in the past, Chelle has a sister-in-law, and this maybe what she was going to say, so I might be still in her thunder, has a sister-in-law who COVID-related hearing loss happened. And because she got hearing aids right away, she's had huge success. And, and so hopefully, I think there's a place for everything, right? So hopefully, the over the counter is that first step to- it's kinda like me, I need a prescription. But I just keep buying these cheap reading glasses to see my screen, right? So I, and I agree with you, Katherine ya, you do need to go to an audiologist or an ENT, get that test know where you're at? Before use it. So then you can help yourself with your research, right? Whether it's over the counter, whether it's bluetooth headphones, whatever, when you start, so thank you for putting that in, because that is a good thought process. But I hope it helps people start their journey sooner than five to seven years, because it's just kind of normal.

Katherine: 27:01

Yeah.

Chelle: 27:02

I was just gonna say real quick that hearing technology was really only the beginning of my journey. It was learning to self advocate, and the education about hearing aids and thier limit. And my hearing loss and why I heard the way I did. I think the other two parts made me a lot more successful with my hearing loss. It was I think of my hearing aids is my training. [laughing] It was It got me there. And it was the step. But it wasn't really successful until I got into the other two areas.

Julia: 27:48

Coming up on the end of our, our 30, 25 30 minutes [mic noise]. Any other questions or comments before I close this out?

Katherine: 28:03

Actually, I do want to say one more thing. I would like to mention that new Facebook group page that I mentioned to you. It's it's called them Hearing Loss the Emotional Side. And we can there's a I have a blog about it, you can get to it through my blog. But I think that it's one of those things that we've always talked about, and that no one has ever really offered any help about. In New York City, we have a very good hearing sort of all purpose Hearing Center called the Center for Hearing and Communication. And they have a they have psychologists on staff who counsel people with hearing loss, but it's the only place I've ever heard of that has that. And I think a lot of audiologists just really don't realize how devastating it can be, especially if it's a serious and sudden hearing loss. And I think people who grew up with hearing loss are more resilient. They've had their whole lives. It's who they are. It's the people who, you know are just as I was just kind of blindsided by it and in midlife. I don't have any family history of hearing loss, there was no explanation for my hearing loss. and I aren't really spiraled into a pretty deep depression, anger. and so, you know, I think it's great that there's now a place where these feelings can be shared and where people who've been around longer can say, you know, can offer some advice.

Michele: 29:38

You know, it is emotional and that's the aspect of hearing loss, it's not dealt with adequately anywhere. Hopefully audiologists are coming more into the patient centered care and offer some kind of rehabilitative services. But people need guidance. They need to know how to learn to self advocate, they need to learn skills. There are a lot of skill things out there that you you pick up. And I remember when I joined the SayWhatClub in 2008, and back then it was just a list or with email groups, I cried the entire first week, just because I heard people telling the same stories about their lives that I was living in my own life, that connection of knowing you're not alone is a huge thing. So it is an emotional roller coaster that we all have to travel.

Katherine: 30:40

That's funny, because when I when my book first came out, I did a lot of reading to hearing loss groups, and I did talk about the emotional impact of hearing loss. And often, there was one reading I gave very early on where there were three women sitting in the front row and they cried through the whole thing. And, and then they were you know, afterwards, they talked to me, they were so grateful to hear their emotions expressed. And so I started thinking of myself as the Liza Minnelli of hearing loss. Everybody was always reaching out to Liza Minelli crying because she understood them. So anyway, um, yeah, but I think this, I think this Facebook page is is a is a good addition. Something we needed. I also, I would like to say if I can, our chapter meetings are every month on Tuesdays, the third Tuesday of the month. And we have great speakers who really have wonderful chapter meetings, and they're all online. And we, in the past year have been getting attendees from all over the country. And so I would encourage, you know, your your viewers to look on our website, which is hearinglossnyc.org. And our programs, they start September 20 is the first one. And we're not scheduled very far yet, but we are not-- well, not far enough to put up on the website. But we have another really interesting season coming. And we'd love to have people from around the country. It's, it's great. So thank you for letting me talk about all these things here. It's really nice to talk to you both.

Julia: 32:20

Thank you for joining us. One of the pandemic things, good things was the online Hearing Loss Association so we can all join each other's chapter meetings and get more information. So, kudos that's, that's great that we're continuing to do that. So Michele, did I see your hand go up before I close this out? Or did I miscue that Well, I

Michele: 32:48

just was going to thank Katherine for being here, acc, accepting our invitation. It was fabulous to have you here. So thank you.

Katherine: 32:57

Do you know what your captions came out saying? It said "thank you for being here. And like sex," something or other, I didn't quite get that.[laughter]

Michele: 33:07

Captions have a dirty mind. Yeah. Automatic captions.

Julia: 33:13

We'll make sure that gets fixed because I'm guessing Otter is going to hear the same thing.[laughing] Okay, well, thank you, all. Thank you, Katherine, for joining us. If you haven't checked out her blog or any of

Katherine: 33:25

hearinglossnyc.org

Julia: 33:25

I will make sure it's on on our rolling credits so that her books, go to katherinebouton.com and do so. people can check out what meetings are coming up for this She has a really great emotional, I haven't read all our blogs, but I was reading the emotional one the other day and I loved it. It was awesome. And and thank you for putting that up and reminding us that there's a Facebook group, the Emotional Side of Hearing Loss. I know they have some great conversations. We will make sure that Hearing Loss New York city.org Did i get that right? fall.

Katherine: 34:11

I'm the president of the chapter so I'm really hoping everybody will come.

Julia: 34:21

Right? [laughter] Anyways, I I've lost my train of thought. So I hope we're having a good summer as summer ends. We're starting our crowdfunding here at Hearing Loss LIVE! Make sure you share and talk to your family and friends about us. If you want join us on our Patreon or Buy Me a Cup of Coffee webs websites where we have certain purchasable information, which is more like our outtakes and how many times we can't remember to turn that microphone on before we talk. We have all of our free stuff like Talk About It Tuesday, every first Tuesday of the month, we'll continue. Of course, we have our blogs and podcasts that come out as well. We will start to build other stuff on the websites of Patreon and Buy Me a Cup of Coffee. So if you like something, visit one of those sites and get some extra content from us. Help us with crowdfunding so that we can finish out 2023 with you and continue to grow and get in the KNOW! Thanks for joining.

Katherine: 35:35

Thank you. Bye. Find out more about Katherine Bouton at hearinglosslive.com.