Hearing Loss LIVE! Talks Tribe

We here at Hearing Loss LIVE! are passionate about you finding your tribe.  Tribe helps us in so many ways with hearing loss.  Come listen to what we found when we found our tribe and what some of our hearing friends and family also learned from the Tribe.

You can read our blog on Tribe at hearinglosslive.com.

Some of our favorite tribes:

www.hearingloss.org
www.saywhatclub.org

Transcript

0:05

Hi, welcome to Hearing Loss LIVE!

Julia: 0:08

Today we'd like to talk about tribe. You've probably read our blog about tribe. So you might have a little insight. Maybe you haven't, that's fine. But tribe is important to us. And Michele Linder, want to raise your hand Say hi, Chelle Wyatt and myself, Julia Stepp, want to talk to you about the importance of tribe, and what it means to us. Who would like to start?

Chelle: 0:37

Okay, I started looking for my people probably in the mid 90s, when I was working in a salon with hearing aids, and how hard of a time I was having with that, because I had hearing aids. And I remember specifically one girl, when I had to ask her what, one lady I worked with, she would go"Are your ears on?" Or "are your hearing aids turned up?" And yes, they were. But it was the old analog hearing aids so it was picking everything up all over the place. And I didn't understand how that overshadowed the voice at that time. So I did a lot of Snowbird to came to the desert in the winter. And I would start asking them, you know,"how are you doing with your hearing aids?" I was 23. No just about 24, 25 years old. And I didn't know anybody else with hearing aids my age. And I was, at that time pretty much hiding my hearing loss as much as possible too because, you know, I was so young. So I would ask them, you know, how are you doing with your hearing aids. And they would say, "Oh, you know, they work, they're helping." And I would let it drop at that point. Because I did not feel like my hearing aids were helping me enough. And I felt like I was struggling a lot. But it was a noisy salon, right. So I gave up. But the internet came along. And it took a long time to get to our small town. And I did some research and I found out there was the Self Help for Hard of Hearing and Association for Late Deafened Adults who met regularly. And, but they were two and three hours away from me. And as a young mom who was working, that was not going to be possible to go to meetings. And I kept searching and I found the SayWhatClub. The SayWhatClub was an online community. And they had an email list. And as soon as I signed into their email list I was I was like, wow, these, these are my people. And they get it. And here's a place where I can vent and ask for suggestions and all of that. And so I would wake up, get that cup of coffee, and I'd sit down at my email to see what everybody had written over the night. And it was also the last thing I did at night. You know, I get my kids put to bed, and I go in and I sit with a glass of wine and read email. But I finally found some people and it was a bond through email only for a while. And I did finally go meet some of them. And I think was'98 for a camp out in the Rocky Mountain National Park. That was my first experience of getting together with people with hearing loss. And it was awesome. I was I was so thrilled I hardly slept. And I spent every minute I could awake. Getting into the experience of being with other people with hearing loss.

Julia: 4:03

Thanks Chelle. SayWhatClub is its own interesting tribe, isn't it? people that come and go from it. Michele, what are your thoughts on tribe. When we came up with the word to describe things-- Chelle Wyatt actually called it tribe, I don't know years ago at that Hearing Loss Association here in Salt Lake. And I remember when she said it, yeah, that's that's what this is. This is, this is a support group, but it is its own tribe. It's, it's the experiences I think that you all have. When you're on your own, you feel alone, having those experiences and over the years I've seen many times where somebody found HLAA or they've found the hard hearing classes we offer here in Utah. And they were like, "wow, you had that too? I thought I was the only one that ever had that." Thoughts Michele.

Michele: 5:11

Thanks, Julia. Um, you know, I kind of had a little bit of a tribe when I was a kid, before I even knew I had a hearing loss. My grandmother was deaf. And she lost her hearing much in the same way that I did at a young age and gradually, and by the time I came along which I was the youngest grandchild for a while. So my grandmother was older. And she was born in the late 18, early 1890s. And so she had some ancestors who had hearing loss and didn't speak. And of course, they were referred to as deaf and dumb, which we know that's not an acceptable term anymore. So I kind of what I learned, I had a hearing loss in grade school, I kind of felt in a tribe with my grandmother, because I understood her more. And I had already learned how to be accommodating to her. But after my diagnosis, I didn't know anyone else my age, with hearing loss. No one ever approached me in school, no teachers, no counselors. And it was in my file that I had hearing loss. So I really had no way to connect with anyone else. When I got married, I was 21. And that's the first time I was fitted with hearing aids. And like Chelle mentioned, possibly in our previous podcast, you don't know the questions to ask, you don't know how hearing aids are supposed to work. And so they didn't really work for me. They were painful. And I didn't know why. Over the years, I tried hearing aids every few years. Hope, hoping that they would help me. I mean, I encourage everyone, try hearing aids. Go for a cochlear implant evaluation. And I mentioned hyperacusis in our previous podcast, and it's a condition where you can't tolerate sound. And it's not just loud sound, it can be everyday sound, sound is painful. So all of those years later, I wasn't diagnosed with severe hyperacusis until 2010 when I went for a cochlear implant evaluation at the Mayo Clinic, and so there was an explanation. I can't tolerate the volume I needed for benefit with hearing aids. And all through that time, I asked my audiologist and we moved a lot because we were military. So I always had a new audiologist, which probably was a bad thing. Had I been able to stay in one place and find someone who really was helpful to me, I might have had a very different experience, I don't know. But no one ever had any answers for me. And it was probably in the late 1990s, when I was desperate for some help. And I went to a new audiologist tried four different makes and models of hearing aids for an entire year, 90 days each. And at the end of that year-- And by the way, I had to pay almost$7,000 out of pocket, just to try. And the way I did that was we contributed to my husband's flexible spending account for two years. And I bought one hearing aid in December, and I bought the next one the next week in January. So I spread that $7,000 over two years. Of course, at the end of the year when the hearing aids were not helping me. I got that money back and I put it into a special account so that the next time I tried hearing aids, I would have the money to try them because you had to pay for them to try them. Which seems kind of ridiculous. But at the end of that year, I was so emotional. I could no longer hear on the telephone. And I pleaded with my audiologist you know, what am I supposed to do? And She, she was very compassionate, very empathetic, but she didn't know. So she sent me on my way with a Hamilton Captel catalog. And I remember walking out of her office with tears, and just thinking, What am I going to do? And so that's when I went to the internet. And I started looking. I'm a, we had a move at that time, we moved from Georgia to Minnesota. And so I was looking for a job. And connecting with the career force in Minnesota, they connected me with the Deaf, Hard of Hearing Services Division of Minnesota in my town. And I did find out about captioned telephones there. But I found out that the people there at that state agency were not my tribe. They almost didn't really know how to help me. They were more focused on Deaf culture and sign language. And so again, I wasn't finding the help that I was looking for. And I went to the internet. And I stumbled upon a SayWhatClub article that someone had posted on their personal blog. And I contacted them. The hospitality person I connected with lived in South Africa. And she was just so helpful. And I felt like such a sudden kinship with her right away. And so I joined. And it makes me a little emotional thinking about it, because that first week, I spent crying, because here are these people who are telling the same stories that I'm telling, they have the same challenges that I have. And they're sharing information that I need to know. And so that was just the first time that I really felt like I belong somewhere. And that somebody really got me. And I think that's what your tribe is. A group of people who get you, because they know exactly where you're going through. Because they're going through it themselves. You may have differences. We're a diverse group. But we're very much the same and a lot of ways. And again, that that was just life changing for me. Finding that group of people. And luckily, about a year later, after I joined Chelle rejoined the SayWhatClub, and we met and became co-volunteers and we kind of clicked right away. We worked really well together. Seemed like we were always finishing up what the other was doing. Filling in

Julia: 12:45

Thank you, Michele. the blanks. That's how Chelle and I became friends and covolunteers. And how this whole thing with Hearing Loss LIVE! thing got started. It started with a tribe, and that's probably the best thing you can do for yourself at onset f hearing loss. Look for your ribe. That is where you will earn the most valuable nformation. It won't come likely rom your audiologist. It probably an, I'm sure there's audiologists ut there that send people to esources that help them learn how o live well with hearing loss. But ot every audiologist does that. nd so there's that huge gap, and our tribe will fill that gap for ou. And so I think this is such a reat topic. I think the tribe is a great way to explain it. And I think the tribe takes those of us that are the hearing friends and family and finds a place to support. I think it's a-- being with the tribe has taught me so much. I think they're very welcoming. I think they take someone who's a hearing partner, and teach them all the things that they can do to help support their their friends or loved ones with a hearing loss. And I think that's a great thing too. I think of Kevin and Charla I think when I think of that, how. How Kevin just stepped right in and he's, he's hearing and Charla is now deaf, considers herself deaf, late in life, deafend. And he just stepped in and he helps wherever is needed, whether it's with a tech issue at a meeting, or-- or they had a sewing class. So he helped her by typing what was being said. So she could participate fully in the class, I thought that was great. I made him write supercalifragilistic, I think a couple times because of that, because he always did that to me. But I find as, um, how important it is that those of us that are supporting people with a hearing loss be a part of the tribe. It means a lot, not only to the partner or the friend, it will teach you how to better communicate is what it boils down to. Knowing about the tribe, and understanding, it also allows me as a CART provider. When I stumble across a client who's really struggling to be able to say, why don't you try Hearing Loss Association of America, they meet on the third Saturday, or here's the SayWhatClub.com, they have different types of Facebook pages that you can join, and it never fails. The client will come back and say, "Oh, my gosh, I have found people just like me, and they get it." Every time. Every time they reach out for those groups. And I think, Wow, just the inclusion allowed because your experience with bad accommodations or how your hearing loss works, or how your hearing aids work. These are all things done and founded by the tribe. I think that that shared experience. What other thoughts do you guys have?

Chelle: 17:08

Okay, I'll go again. You know, I was thinking about Julia being a part of our tribe. And I worked at the Deaf and Hard of Hearing Center for the state for eight years. And a good portion of that was part time, and I would go and attend meetings. And I was at the Deaf and Hard of Hearing Center. But it was more Deaf than it was hard to hearing. Of course, I was the only person with with the hearing loss most the time at the Deaf meeting at the Deaf Center. And so they would be using sign language. And I learned enough to get by but never enough to be fully fluent. And I would be in these meetings with voice interpreters, and other signing going on. And I had, I felt like I had no ally there, except Julia, who was providing the CART for me. So I remember I would go into the meeting, and I would go sit right next to her because she was a part of my tribe. And she understood and she helped me keep up with things not only with the service she provided because she was always doing extra. So that was what made Julia part of the tribe A long time ago. My -- Oh, sorry. Go ahead Michele.

Michele: 18:38

I think it's great that you've shared that and I, you know, I consider Julia part of our tribe too. Every time I've requested CART for a live events. I always feel like the CART provider is part of my tribe. Because they're doing everything that they can to make the accommodation. They're providing as full and equal as they can because that's their job. Someone else may have hired them. But they're there because I requested them and so they actually feel like they're working for my benefit, which they are. And they understand sometimes how hard it is for us to self advocate not only becoming comfortable doing that, but not everyone is going to accommodate you easily. And so sometimes you have to push really hard and they are there to cheer you on and support you and, and as Julia said she shares some resource information with her clients. So I've always considered that CART providers that I've worked with at live events where I've requested them to be part of my tribe, because they get what it's like for the hard of hearing, to have to advocate for themselves so hard. And also, I think Julia understands the level of concentration it takes to lip read, to follow captioning, to take in information--information visually. And she has that same kind of concentration when she's trying to transcribe what everyone is saying. So I've always felt like CART providers really understand that intense concentration, because they use that skill themselves.

Julia: 20:55

Yeah, I remember the first time we talked about hearing breaks, and I thought, ah, I know what that means. And I've always been jealous of people who can take their hearing aids off at night and say, I don't have to hear anymore. Um, you know, and it is, as a CART provider, we are part of the tribe, we, we see the struggles every day. We don't-- we, most clients, especially in the college level, I might follow them for four years. And some will want me to stay in the background, and I'm fine with that. And some will say come sit right here next to me and and talk to talk to me on break, and I'm fine with that. Whatever their comfort level is. But I always find they, the struggles that they face, if I can educate somebody on how important accommodations are, then I, you know, I've done my due diligence. I'm not asking you to hire me. I'm asking you to know the rights and know how it works and know the accommodations. And the tribe has taught me that it's okay to to support that, or how to support that, I think is what I'm thinking, how that looks, and how we can help with that barrier. And how those, those that are hearing partners can also advocate and take some of that stress off. Because a lot of times at our meetings, we talk about how much advocacy we have to do for ourselves, or yourselves not me. And knowledge. And, and I also think if the tribe got bigger, how that knowledge might exponentially get larger, and changes that we could make. When somebody goes to their HR or their employer and says I need CART. The employer goes, Oh, yeah, I know what that is, and automatically hires a CART provider. So I think tribe can make that happen that that community education happens in larger in larger respect with a tribe.

Michele: 23:36

I'm not sure if you called on me, Julia. No. Is there something I can add here? You know, that you mentioned the tribe getting bigger. And I think that's a big goal of Hearing Loss LIVE! the majority of people who are hard of hearing, have no idea what's available to them. They don't know other people with hearing loss. And so we want to reach those people and, you know, Deaf culture, they started out probably where where we are. Where not a lot of deaf people knew about sign language and the culture and that grew to a very cohesive movement. And that's very, something I respect very much, and I think the hard of hearing need that same kind of tribe. that same kind of culture. That same kind of movement. That takes us to a place where if you're hard of hearing, it's common knowledge, what's available to you. Things like CART, speech to text captioning, all the other equipment, strategies, just everything we need to grow our tribe, so that we're a group of knowledgeable people who advocate for what we need.

Chelle: 25:06

So yes, we need to grow the tribe. And that is one of our main goals. The more of us there are, the more, the more we're asking for what we need, the more likely we are to get it instead of fighting it all the time. And one of the things that popped up in my mind, while Julia and Michele were talking is how the tribe gives us role models. You know, there's some things we have never thought of, or maybe like, Oh, my gosh, look what she just did. I think I can do that. And then you go out and you follow suit. And that's what we need more of it. So in Hearing Loss LIVE! you, you have a couple of role models, but I'm sure we'll gather a whole lot more. Because there's a whole wide network of great role models out there. And we'll be trying to pull some of them in. And that's one of the things I've appreciated about all the hearing loss conventions I've gone to. Every time I've gone to one, I felt like I've come home because there's, there's hearing loops, they have headphones you can use if your hearing aids don't have telecoils, they have captioning. So no matter where you are, you can fit in. And so I've met a wide, a wide array of people from all over the United States and beyond because of these hearing loss conventions. And it gives me a wide network of people to pull in for issues and like oh my gosh, I know somebody like that. I've done that to Michele several times from Utah. "I know somebody who doesn't benefit from hearing aids, let me introduce you to her". Because she's a great role model of how life can be without hearing aids.

Michele: 27:09

I've always have appreciated that Chelle. And there are lots of things that I've looked to you for and admired over the years and tried to model myself. And so I think we are, we lift each other up, we learn things from each other, we borrow courage, as you said, when we're feeling vulnerable, and there's always somebody who's out there doing amazing things, and it doesn't even have to be somebody with hearing loss. It can be somebody that has a different disability and and you think wow, what you see is the person you don't see the disability you see this capable, energetic person who's just living their life and not letting their disability be the the main thing about them and doing that just really helps educate everyone on how capable people with disabilities are. Good insight. I like to thank you for joining us today on our podcast of tribe. Please join us at hearinglosslive.com and read our latest blogs and video links. We will be talking next about "you don't know what you don't know" and what that means to us and what we didn't know and hope to help you know. And maybe you can bring us a "you don't know" and we can find out together. Hearing Loss LIVE! is all about us helping you help yourself. We hope you enjoy our content --excuse me- We hope you enjoy our content. And like us on our social media and follow us with hearinglosslive.com Bring us your questions. Let's find out together and learn and grow. Join the tribe. It's important.[NOTE: Hamilton CapTel should be Harris Communication]