Hearing Loss LIVE! talks shame this past week. Join us as Michele and Chelle talk about events that influenced their thoughts about their hearing loss and how they pushed past the shame, when they had it. Julia talks about her struggles and has more questions than answers when it comes to hearing loss and the continued lack of knowledge and employer misunderstanding of work place accommodations or why there should be shame with hearing loss at all.
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Hearing Loss LIVE! talks shame.
Julia: Hello, welcome
to Hearing Loss LIVE! Today we're going to talk to you about shame. There's a lot of shame and stigma. I think that comes with hearing loss and, and we've found different ways to deal with our shame. So we'd like to talk to you a little bit today about how, well I'm going to talk about how I viewed it with my grandmother, but Chelle and Michele are going to give us firsthand experiences and what they did. Michele Linder, can you start this off and thoughts on shame?
Michele: I'll get the hang of the microphone thing eventually. We all forget at times. But just what Julia said, hearing loss is stigmatized by society, and those of us who experience it, we have a lot of self [stuttering] stigma to work through. But I think it boils down to anything that makes you different or that is perceived as being less than. Nobody wants to be thought of less than and so we kind of fear those situations that are going to make us feel that way. You know, we don't want to be judged. We want to fit in. We want to not be different. And you know, I don't think I consciously hid my hearing loss as a child. But because no adult, advocated for me, and I didn't wear hearing aids, so no one really knew that I couldn't hear. Although it was in my file at school, I would have bought some adult in the school system would have brought it up. But I think I coped so well that it made people just not even make an issue out of it. And because no one made an issue of it, I just kind of got on with the business of trying to figure out how to get through school. And luckily, my brain kicked in and filled in the blanks of, you know, what I couldn't hear. But I didn't even know that that was happening. And you know, in the 1960s, and '70s, hearing loss wasn't a topic that a lot of people talked about. So there was just no information out there for me. So I didn't really know that I should be ashamed of it. Wasn't my fault, so I didn't really feel like I tried to hide it. Also, my grandmother was deaf, and she was a lipreader just like me. And she was the person in my life that I most admired and loved. And she got along in life with hearing loss much better than the adults who could hear in my family. And so when I looked at her, I didn't really see a disability, I just saw a very capable woman who made the best of things. And so I learned to make the best of my own hearing loss. But then, you know, you grow up and you get in middle school and high school and things change big time. So I think that the first time I can remember about being embarrassed to have hearing loss was you know, you're with a group of friends and you're singing along with the radio, and you're singing the wrong lyrics. And they all laugh at you. And you feel that rush of heat and you're just embarrassed and humiliated and you make light of it, or you laugh it off. So I had many of those experiences in school as a young person. And then once you get to the age of dating, that was really tricky. I mean, it all starts out fun and happy. But when you're riding in the car with the boy and the sun goes down, and you can no longer lipread them. It's just you don't know how to handle that. And I, I think more than shame, I just didn't have the tools that I needed to tell people that I couldn't hear. I didn't know how to do it. And so that's kind of what made me feel humiliated. And I faked it a lot. I was a great faker. No one knew I could stand and talk to somebody for an hour and get very little of what they were saying. But I nodded and laughed in all the right places. And so I robbed myself of learning during those years. And I think we all do that to some extent. So while I didn't really stigmatize hearing loss as being related to being shameful there was some aspects of shame associated with it for me, and took me far too long to face up to the fact that I needed to do something different. That faking it wasn't getting the results that I wanted. And so you know, I can't I think that's how we rid ourselves of the shame and embarrassment about hearing loss is we learn the skills that we need, we learn how to self advocate, we learn how to tell other people we can't hear, and what they need to know about us for communication. So, you know, I, I know, shame keeps a lot of people from admitting to their hearing loss or even seeking help. So it's a real tricky subject.
Julia: Thank you, Michele. It is a tricky subject. Chelle can you give us some thoughts on your shame, I guess, that you carried and maybe how you solved it? If you did?
Chelle: Yes, I did. There was definitely thought to shame and I didn't recognize that for years. I remember, my ex-husband was not a very nice person. And when it came to hearing loss, he would use it against me, like, ask me a question from the other side of the house. And if I didn't say anything, it must be okay. And then I remember very clearly another time when he was talking in the kitchen, and he was actually talking into the cupboards. And when I said, asked him what, he got down, got close to my face and said, I said, and I was like, why, you know, it was always things like that, to make to -- belittle me. He turned off captions constantly. He didn't like them on the TV, they bothered him. So I learned from him that hearing loss is a pain in the ass. And I took that fear with me. And I was working at the salon at the time, which is noise city. And I learned to fake it with my customers thinking I wanted to build clients. I didn't want to scare them away with my hearing loss. All of this is just how my husband, ex-husband, colored my life, my past experiences, colored how I dealt with people for years. And it took marrying another guy who was very good about my hearing loss and he was my first date after the divorce. And he was, he would tell people all the time like ahh if she doesn't hear you if -- let me see, if she walks away while you're talking to her, it's because she didn't hear you or he would notice my faking it look and say, "oh she didn't hear a word you said. You're gonna have to repeat everything to her and this time you need to look at her." So here's this really wonderful advocate for my hearing loss and that worked out really well with him and because he constantly outed me, which was a frustration of sorts in its own. I would be that flood of embarrassment like Michele is talking about. But then I noticed that people were really good and wanting to work with me. They would look at me, almost all the people would work with me when I said it. So I learned to quit kind of having the shame felt to hearing loss. And I started to be more upfront about it. I remember when I was faking it in the salon, bluffing, I would be not able to hear'em because there's hair dryers, blow dryers, radio, and it was the desert so air conditioning was constantly running and if it wasn't running, the heater was so I had all this background noise that prevented me from hearing speech well. I learned to say wow, in about three, four different ways. Wow. Wow. Oh wow. You know, so they never knew like I learned how to match their tone to what they were saying. With my Wow.[laughing] And, and I did pretty good except for one day one lady was telling me that her sister was in the hospital and she needed to go back home to stay with her sister, she might not live much longer. And she had the most deadpan face and no expression to her voice. But of course, she was trying to probably maintain her emotions. And I said, "wow." And she just looked at me and I was like, Oh my god, I said, the wrong thing, you can just tell by the other person's expression, you've just gone off in the woods somewhere. So I had to come out, and I told her about my hearing loss and that actually ended up being a very good conversation and we talked about it quite a bit, and it kind of helped alleviate my fears about being upfront with hearing loss too. And, and another thing with faking it, sometimes I do it just because I'm so tired, I can't think straight anymore. And so I faked it before I realized it. Or I'm I'm busy concentrating on something. My husband's over here talking to me and I'll go "Aha." So he gets, he got really mad at me one time and said "you cannot go"-- "you cannot fake with me because that's to me, like nevermind is to you." And I was like wow, so that's how the hearing feel when we bluff. And I'll leave it right there for now.
Julia: Thank you, Chelle. I think in this blog, I actually asked more questions than I answer. And I think that's because I've always been confused about why there's shame. I mean, I get it but I don't. I mean i'm hearing privileged, right, so I haven't had that type of shame, but I think we all have some type of shame we have to deal with. So I tried to measure it. For me, I noticed I think after my grandma passed away even that she must have had shame because she hid her hearing loss from what age eight and that's the 30s/40s and there was that stigma of Deaf/dumb that I'm glad is gone because I think it's so inappropriately wrong on on what people with a hearing loss can look like. But because she had been so she learned to lipread at eight. And so she was proficient lipreader. I've only met two other people Michele is one of them, that can lipread like she did. I always grew up with her wearing hearing aids so I didn't think much more about it, until later when she had her last hearing drop and I saw what becoming a proficient bluffer did. I didn't, I don't think I associated the shame until we even, I think until we started writing blogs and talking about it, but she had such shame that she would fake it, bluff it, fake it, whatever you want to call it. It caused some of her friends to think she had dementia. It caused some of her friends to not want to do things with her because the functions that they did, she could no longer do. She had a really good friend they played piano duets together and instead of grandma just saying hey, I'm going to be off key. She would pretend she could hear and it was the other person who was crazy and so I struggle with shame and bluffing and and what it looked like for my grandma at the end there I guess. I think I'm gonna leave it there because I just always keeps bringing up more questions and hopefully I can articulate them as we go along. And you can maybe help me through that, what it would look like. Who would like to give some more thoughts? Chelle.
Chelle: I just, as you were talking about your grandma, I was remembering lady that took a Living with Hearing Loss class north of here in Salt Lake. And she was so protective or ashamed of her hearing loss and her hearing aids that you know, she had her hair over her ears. She would not tell anybody about her hearing loss. She admitted it only her husband, none of her friends. And after a while we all told her I said do you think they might know anyway that you have hearing loss or something and she's-- Do you want people thinking she's not smart? Or do you want people to know you have a hearing loss and go, Oh, she just didn't hear me. So that's that's kind of where I came in and got out the faking it bit myself is that I didn't want people thinking, "Oh, she's not intelligent," you know, "because she, she can't answer sentences or questions or make conversation." Instead, I wanted people to know, I didn't, I had a hearing loss, have hearing loss. So this lady in Layton, I don't know, it's like your Grandma, I'm wondering where she picked that up, that she was so scared of revealing her hearing loss. And I think sometimes it goes back to maybe bullying past experiences. Maybe she witnessed somebody get bad treatment because of their hearing loss, or she just learned she wasn't going to go there. And she was almost defensive about it instead. So it's, it's, I think it has to do a lot with past experiences and, and how we experienced our hearing loss, because I know I had it. Michele didn't really have it, except for when it comes to certain moments when we do hear wrong and we don't know it. But I got over it. But I've seen a lot of people come into the office when I worked at the Center here. And there would be people who had hearing aids, as a kid, and were completely bullied. And they're still traumatized in their 30s, 40s, 50s about this and not wanting to be up front about their hearing loss. We need to be able to drop that past story or get over it and go that was then it's different times now. Almost every time I tell somebody now, I'm able to open up a conversation about hearing aids and hearing loss. And of course, the more people I educate the better.
Julia: I like that. One thing, and then I'll pass it to you to Michele. Employers who have an employee that comes to you, and needs help with their hearing loss. Maybe they don't know exactly what that is. But they say I need a caption phone or I need CART or whatever. I have heard a couple of stories in the last couple months where they leave the employment and they will not tell anybody about their hearing loss at their next employment. Because they've had such terrible treatment, about their hearing loss that it's 2021 folks. Shouldn't be happening anymore. Just shouldn't. Michele.
Michele: You know, I was listening to Chelle talk about her early employment as a hairdresser. And it reminded me of my first jobs out of high school. I was a bookkeeper for a year. And then I went to work for an attorney office and was a legal secretary. And I guess I have this subconscious denial, because I guess I always thought of myself as a hearing person who just didn't hear very well. And so it didn't even occur to me that I could not do those jobs. But I would take shorthand, and would not hear a lot of what was said so then when I would type up the letter, there would be obvious mistakes, and my boss would be, you know, kind of irritated at that. I used to get people's names wrong on the phone when I would answer the phone. I had to transcribe, you know, testimony in court from tapes, and I was making all kinds of mistakes. And you know, and I still didn't even tell my employer that I had a hearing loss because I didn't really even know that I should. I guess I kind of wrote those kinds of things off as oh well that's life. So I didn't stay in that job more than a year. And it was a relief actually to give that up. But I guess I was in some kind of subconscious denial that I was pretty much a normal hearing person who just couldn't hear very much. So it's kind of odd in and you know, a lot of people might question why, if my grandmother was such a capable person, why she didn't steer me more. But she came from a whole different era. I was the youngest grandchild for a long time and I only had her for 18 years of my life, unfortunately. But hearing loss was just a whole very different experience for her. She was born in the 1890s. And even back when I was young in the 60s and 70s hearing loss wasn't talked about a lot. And I don't think she knew a lot about hearing loss other than what she experienced and she was very capable and just seeing her live her life in a very capable way and and getting by on life with lipreading, I guess that made me feel like my hearing loss wasn't that big of a deal. Was something I get love less. So I had the benefit of her being a positive role model. But she really wasn't the kind of person that knew the things to tell me on how to advocate because she was pretty much a homebody. So it's just kind of an interesting all the different experiences that we have. And you know, I think shame equates to fear. And like I said, that fear of being thought of less than, and I knew pretty much from the start that I didn't really want that to flavor my life. I didn't want, I still didn't know what to do to do better at advocating and that but I just know that not acknowledging my hearing loss, that wasn't going to solve anything. And it really boils down to just really not having the tools that I needed to be upfront about it or not even knowing that I needed to be upfront about it. So you know, I had elements of shame. But I think some people just really do try to make a concerted effort to hide their hearing loss because they see it as such a, you know, detriment.
Julia: I agree. And fear of asking for different accommodations. Because you can lipread, you shouldn't be able to ask for any other type of accomodation? I think that falls under shame because you have to keep asking and asking and asking and not getting understanding. Wouldn't that relieve a whole bunch if employers took some classes and learned all the tools that they could use for their employees? I don't know. Another question. Chelle, any more thoughts?
Chelle: Sure. I was just thinking about my most recent little moment of embarrassment, and a lot of times this has to do with not knowing when people are on the phone. I don't hear phone ring, phones ringing and it's only me and my husband in my house. So I don't hear it ringing and all of a sudden, all of a sudden he's talking in another room and I'll kind of come in and go what. He's like I'm on the phone and I'm like. I just I can't tell I don't know this is this has been constant in my life but with phones, and the other night I was in my telecoil in my living room. So I'm really focused I get only the sound from the TV and my hearing aids when I'm in that mode and he started talking over here and I'm like god doesn't he know i'm i'm on the, I'm in my telecoil and that I can't hear? why is he talking at me? And I said, "wait a minute." and so I push my buttons until I got out of the telecoil mode, and I looked over him he's like "I'm on the phone," and he told- and he's talking to his dad and he says "well, Chelle is over here freaking out." [laughing] You know this just one of those things I just I don't know and because I, we live alone together I don't expect them to be talking to anybody else most of the time. So there's those those little moments. And I've had people following me out the grocery store because I forgot something and they're behind me saying Miss Miss or something like that, and I don't hear'em and finally they get right up behind me and go "Hey," and I'll turn around and they give me whatever so there's those little moments and you know what I do feel ashamed at those, at those times. But I always say, you know what, I have a moderate/severe hearing loss that I just cannot hear well so thank you for following me out the door.
Julia: Owning it, so that they know what's going on. Michele.
Michele: Yeah, I was just going to ask Chelle if she really, she really had that, that humiliation embarrassment feel? Do you still have that? Like you used to?
Chelle: Like with the phones or from way back? With the phones. With phones sometimes. It's just a short flash now. It's not anything that lingers. It'll be like, oh man, you know, like, how come I didn't know that, but really, there's no way for me to know it. So I let it go a lot faster than I ever used to.
Michele: Right. Well, you know, I, maybe I'm just not, maybe I'm just old. But even you know, I'll be in the grocery store looking at a card wrack and my cart will be blocking the way and somebody is trying to get past me and they've probably been talking behind my back for a minute. And then they finally tap me on the shoulder and I look around and they're irritated. I used to get so humiliated with that and would just cower out of the way and profusely apologize. But it's not my fault I can't hear. So I just turn around and look at them and say, I'm sorry. I'm deaf. I can't hear anyone behind me, excuse me, let me move my cart. And I find it's really kind of freeing that I don't let those moments make me feel that panic and that rush of heat. And that. And I mean, sure, there are experiences where I do that. If it's something that's I'm not used to reacting to. I'm certainly not saying I never have that but rarely do I feel humiliated anymore about my hearing loss. Because I think I've cut myself a break. And said,you know, you can't help it. You didn't choose it. It's not your fault. And so there are going to be times when you're not going to know when people are speaking to you or you're in the way. And that's okay, that's just part of life. That's not a big deal.
Chelle: It kind of depends on if they give me attitude or not. There was one time that a lady a cashier gave me attitude. And my youngest son was with me at the time. And he was like, I think 20 or something like that. And he says, and I gave her attitude right back and I said you shouldn't expect everybody to hear, you know, I can't tell what you're saying. And so be polite, be nice. And my son said, "Boy, I thought you were going to jump over the counter mom." So if I get attitude I give attitude right back. But most of the time I do I still feel that little rush of shame, but it's gone within a minute or less anymore.
Julia: Thank you. And I think anytime you're in a new situation, I think you're going to have that little split sense of shame. That might be something that you practice before you go out to whatever event and then you know, be prepared for something to go wrong. But then you don't have that shame, maybe. Maybe a practice tool. Maybe not. Any more thoughts? Thank you for joining us. Oh, I looked away. Thank you for joining us here at Hearing Loss LIVE! where we talked about shame. Next week, we're going to start a new module. And it's gonna start with kids advocacy. I forgotten the name already because it's been a long day, so sorry. I will look it up and make sure it's on the end credits. We hope you're looking forward to our HoH, Hoh, HoH gifts. Workshop information should be coming out fairly soon. So watch for that and join us and learn more about apps and accessibility at your Christmas holidays. Thank you for joining us. Like us on our Facebook, Twitter, whatever social media you have. Subscribed to our YouTube channel. And thank you for joining Hearing Loss LIVE! Bye! I -- Join Hearing Loss LIVE! next week with Hollie Poe talking about parenting kids who have hearing loss.