Hearing Loss LIVE! Podcast

Hearing Loss LIVE! Talks Defining HoH

September 27, 2021 Hearing Loss LIVE! Season 1 Episode 5
Hearing Loss LIVE! Podcast
Hearing Loss LIVE! Talks Defining HoH
Show Notes Transcript

One thing we have found here at Hearing Loss LIVE! is that accommodation needs for those with a hearing loss is different for each individual but we constantly must educate what our accommodation needs are out in public that one size does not fit most.

Join us today as we talk about our accommodation woes as HoH's and what you can do to help define your accommodations.

Check out our blog on Defining HoH at hearinglosslive.com

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Julia:

Welcome to Hearing Loss LIVE!, where today we define hard of hearing. Good morning. Welcome to Hearing Loss LIVE! Today we'd like to talk to you about defining hard of hearing. One of our favorite quotes is we're HOHs. And that means hard of hearing. I would like to introduce, as you all know, Michele Linder, Chelle Wyatt and myself, Julia Stepp. We would like to talk to you today about defining hard of hearing, Michele Linder, could you start us off with your thoughts on definition?

Michele:

I can. Yeah. You know, I think when you lose your hearing, you're trying to redefine yourself. Or sometimes you don't even know that you need to redefine yourself or figure out what you need. And for me, well, first of all, I think defining your needs as a hard of hearing person, who uses spoken and written language. It'll be one of the most important things you do in your entire journey. Because until you start to define what you need, you can't tell others what you need. And, you know, I looked for someone to give me some guidance in that area for a long time, and I decided I was going to have to try to figure it out for myself. Because in my early adulthood, I coped really well with my hearing loss even though it was severe, and so, and I really didn't give it that much attention. So I did a really bad job of telling anyone, even my family, what I needed. I made it easy for them to even forget that I had a hearing loss. And that was not a good thing. But a lot of us don't figure it out until later in life. And that's a sad thing. And that's part of what we want to help people with. But a lot of times because the Deaf community and Deaf culture is so well defined, and it's so out there, they had a great attention grabbing movement, and were very visible during the ADA being developed and written into law, that so many wrong assumptions revolve around the hard of hearing. A lot of people assume that we sign. And the vast majority of us do not. And in my captioning advocacy, that's one of the things that people are most shocked about. When I share those numbers with them. According to the World Health Organization, there are 466 million people in the world with disabling hearing loss of that number, at least 85% are like Chelle and me and other hard of hearing people. We do not use sign language for communication access. That number also is likely much higher. Because the access to sign language education is a pretty low percentage in the Deaf community around the world. And so when we as hard of hearing people define what we need, we create more of a community and more of a culture. And realistically, there are very few of us who are out there advocating and actually looking for what we need to participate and contribute to society. And that's partly our own fault. But it's also part of the general populations fault because they just make assumptions. And they don't know until we tell them and so that's kind of what we need. We need hard of hearing people to define their own needs. And as a group, we need to educate the general population on how our needs are different and actually focus on what we need for communication access. So it's a really important issue.

Julia:

Thank you, Michele. Always strength in numbers right? We can we can change the world if we have the numbers. Chelle Wyatt, tell us a little bit about your thoughts on defining hard. [julia making garble noises] Tell us your thoughts on defining hard of hearing.

Chelle:

Yes. There's so much to say here. And I try, I'll try to condense it a little bit. I have worked in the Division of Services of the Deaf and Hard of Hearing, which forever was called the "Deaf Center". And when I came in, I would go, I would always add, and hard of hearing. So people actually quit calling it the Deaf Center, and they would start to call it Okay, it's the Sanderson Community Center. But it's amazing how easily the hard hearing are forgotten. And when I first started working there, I was thinking, Okay, 20% of the population has a hearing loss. And 2% of that, around there, is actually Deaf culture and American Sign Language and all of that. So the finding comes from states, like for hard hearing numbers. And I'm not saying anything against the Deaf at all. I admire them. They made a great movement. They're an example for us, and what we need to do, now, we need to rise up together and start asking for accommodations. But that is hard, because so many hard hearing people don't know the accommendations that are available. It's always Deaf, as Michele said. It's like going to the doctor and being offered an ASL interpreter. And I'm like, I only said I was lipreading, I didn't say I sign. So there is a lot of assumption that way. And, and it's not anything against the Deaf. It's just that we need to make our own movement so that like when I get papers for insurance or doctor's office, they list the, the needs, the interpreter needs. Right here

it says:

language services to people who speak another language or have limited English skills. And it says up here, skilled interpreters, skilled sign language interpreters, and for the others of us it says written material and other, in other format, large print, audio, accessible electronic format, and Braille. No where in there, does it say CART, we can capture things for you. There's sign language interpreters, but but nothing really here inviting to me. But I again, I kind of blame us in a way. And when I started Sanderson Center, I was, I was like, God, we need more services and more attention. But the problem was just I didn't have enough people behind me to ask for it too. So I had to lay off for a while. And then when I became the hard hearing specialist for Utah, I started to push a little bit more for CART and other services. And I opened up classes and different presentations online. And finally, we started getting more hard hearing people in and I'm proud of myself for bringing up the hard hearing attendance in the heart-- in the Sanderson Community Center for equal to, or just a little bit more than, the Deaf attendance this year. That, that's the first time that I know of that that's happened. So I know we're up there. And I know we can do this. And this is part of why I'm starting this business because I want more of us to say, Hey, I deserve to have CART. I deserve equal access. But we need to make that movement. That's what we're trying to do.

Julia:

Thank you. You know, it's interesting, because as we were writing this blog, I was trying to think, as a captioner, and as a hearing partner, what defining hard of hearing means, but you brought some interesting thoughts to my head, Chelle and Michele, um. We've put in some numbers, right, that we've researched and looked up on those who are hard of hearing and Deaf. If you think about how many hide their hearing loss, how big do you think that number might really be? That just, just putting that out there. If 22% is a number, add another one or 2%, at least, people who have either not admitted yet or are actively trying to hide it. And one of the things that went through my head, when we were writing the blog was if you go to your employer, or your doctor's office or out in the community, and you say, I'm hard of hearing, I need CART/captions, or you say I need assistive listening device or whatever, or I need accommodations. And they say, "Oh, yeah, we'll get you a sign language interpreter," that person knows they have to comply with ADA, Americans with Disability Act. They already know they have to comply. They just don't understand what CART or captioning is. Because we need to say, "No, I need captions. I speak English, I read English, I need to see the captions in English to understand." If we do the same thing that the Deaf community has done as a hard of hearing community--and they've opened the door, this is actually a conversation I had years and years ago with one of our community colleges. That we just we need-- the hard of hearing needs to have the same movement that comes forward and says, "NOPE," this is what our accommodation is, this is what we need. And if we do it enough, what will happen? If there's enough of us hearing partners and person with the hearing loss, going out there and requesting the accommodation? What will happen is future generations, hopefully not too far down the line, when they go to their employer, or that parent gets with their counselor for an IEP for their child with, who's hard of hearing. And they say we need CART or we need captions. For the accommodation, the person will go "Yep, here you go." Right? They will know exactly what that means. Michele,

Michele:

Sorry, forgot to turn on my mic. It's kind of a double whammy. You have a hard time defining what you need because there's not a lot of help out there, unless you find a support group or a tribe. And that was a big turning point for me in my life, was finding the SayWhatClub and connecting with people who were farther along in their journey than I was. And they shared what their needs were and how they met those needs. And that was so helpful to me. And you know, that's why I've volunteered for the last 15, 16 years. With the SayWhatClub, actually, less than that, and why I became a captioning advocate. Because I started to feel like okay, I know more now. And I feel a responsibility to pay that forward for the people who were in the position that I was. When I didn't know what I needed. But once we do find our, or define our needs for ourselves, and they're very unique, I mean, some of them are very intimate needs, and will be unique to us. Others are broad, like for communication access, we all need to see what is being said, in captioning or a text format. But once we start requesting what we need, then we actually hit another wall. And it's what Julia was describing. Every time I've requested CART. I've been offered a sign language interpreter, even though I've specifically requested CART and that's a credit to the Deaf community. How visible their movement and their needs are, and not to take away from that. But we need to work to get what our needs are in the forefront equally with what Deaf culture needs. And more people need to stand up and take responsibility for that. And it's not a competition. Our -- for reading what we need does in no way take away from what the Deaf community needs. They need sign language interpretation. That's their preference, but it's also their language. And so it takes away nothing from them. And it's not a competition. But the hard of hearing are very timid, and very unaware of what they need to participate and communicate out in the world. And so that's, that's what we're trying to do with Hearing Loss LIVE! Trying to get more people involved. And you know, when we were writing the blog article, there were so many things that we all repeated when each of us wrote, because it's something that everybody with hearing loss needs. And, you know, I cited those numbers at the beginning. And I just want to ask people who are hard of hearing, look up the population in your town or your city, and then calculate 20% of that number. Some will be part of Deaf culture, but the overwhelming majority have similar needs to your own. How can you connect with those people in your own community? Think of ways that you can network and help each other. And I mean, it's just amazing to think what could happen once the hard of hearing are as aware of what they need, as somebody who's a part part of Deaf culture. And I think a big part of the solution is starting a cohesive hard of hearing movement and creating a culture of our own. There's a small online community of hard of hearing. But in my real life, I really don't know anyone else in my community. Who has hearing loss, of course, I live out in the middle of nowhere. So that's part of it. So anyway, those are my thoughts I don't want to run on. I need to give somebody else a chance to talk.

Chelle:

Okay, so this is Chelle. And I'll go ahead and go right now. Because lots of things pop up, there's so much to talk about with this. It's just, it's hard to focus on one little part. And, you know, a lot of my friends know, I'm hard of hearing. And we often get lumped in together with the Deaf. Nothing bad. Again, we are under the hearing impaired label, which a lot of people hate, mostly the Deaf, and quite a few hard of hearing people. We'd rather be people with hearing loss or the hard or hearing. But anyway, a lot of my friends tag me on Facebook and stuff with pictures, and news articles pertaining to like a new sign language coffee shop that opened up or a new pizza place. And I'm like, I don't really know the sign language enough to even take advantage of those kinds of things. I know some. I've learned I can get by. But I am in no way fluent. CART remains my accommodation. So I think there is a lot of misinformation and misconceptions out there. And one of the things for the hard of hearing is you just get them assistive listening. Or, you know, here's some headphones. Here's FM system. Here's, you know, these different things here. We'll give you this turn it up, you'll be fine. It's not the case. You know, I got by that way for quite a while but when my hearing loss hit the severe stage, volume doesn't help, clarity does, you know, not just louder. I need I need CART now. And you know, as Michele said, I've run up a wall, up against a wall with people offering me interpreters, ASL interpreters. Or if I asked for CART telling me no, you can't have that. But I'm like it's the only way I can participate now because that, I've lost enough hearing, I can't do it any other way. So one thing I want to say to my hear, my hearing friends and to hearing people out there listening is don't assume. Ask us what we need and respect our answers. If somebody needs an ASL interpreter, go for it. Give them that access. If somebody asks for CART, live captioning, please give that person the same access.

Julia:

Thank you. That's really good advice for us hearing people. One of my thoughts when we were writing this blog as a hearing person with family members with hearing loss, it is not my job to define what that hard of hearing person needs and I see that happen a lot. Go get a hearing aid so you can hear me. That may not be the answer. Go get a cochlear implant, it'll work, you'll be just like we were before. That's not going to be the answer. You're going to have to let the person with the hearing loss, define their needs. And you're going to have to help support that. Even if you don't agree. It's not your job, your job is to work with their needs. This is one of those points where the hard-- the hearing person just has to have patience and has to be given the answer not make the answer, I guess is what I'm trying to say. It's it. Yeah, if it's CART, it's CART. If it's taking sign language classes together, it's taking sign language classes together. If it's taking-- your own support group, your hearing person, yeah, lipreading, lipreading classes. I think every person who supports a hearing loss individual should have to take a lipreading class and learn exactly how difficult lipreading really is. Especially, if it's hard for when you can hear all the words, it's gonna be hard for a person who has holes in the word. Any other thoughts? I think we're coming up on our 30 minutes. Let me put my glasses on real quick and actually look, oh, we've got a couple more minutes. Any other thoughts you want to give out

Chelle:

I'll go again, just just say please hard of hearing other there? people, my hard of hearing tribe, please stand up and ask for accommodations. It's okay. It's not the end of the world. We're really good advocates for other people, a lot of us, because we know what it's like to be squashed. So we're advocates for other people, and it's okay to be an advocate for yourself. Ask. No matter how small, start with baby steps, work up, or there's so many different methods, but we'll talk about later. But we deserve our communication access just like anybody else. So don't be afraid to ask please.

Julia:

Thank you, Chelle. Michele.

Michele:

I just have one more quick thing I want to say. Again, you cannot tell someone what you need until you know yourself. And for so many years I had no idea what I needed. And until I defined that for myself, I couldn't tell others what I needed. Now that I tell others exactly what I need, and I'm not good at it in certain areas, but I'm really good at it and others. But now that I can do that my life just goes so much smoothly. And you know, I have a profound hearing loss. I don't hear people speak. I don't hear my own voice when I speak. And I can function and be a participant in the world. And I used to hang back when I was younger and and didn't really realize my full potential. And I'm happy to say that I'm a very different person now. And that comes a lot with defining your own needs and finding your tribe.

Julia:

Thank you, Michele. I'd like to thank you for joining us at Hearing Loss LIVE! I would like to end with if you're concerned or nervous about asking for accommodations or you need to borrow some courage, please join us at Hearing Loss LIVE! We are happy to help you with that. We can come in and talk to your employer. We can come in and talk to your state services. We can just talk with you to help give you that courage that you need to help us join the tribe. As the tribe grows, we hope accommodations become more open and just happen. I don't know how else to explain that. But I'd like to thank you for joining us. We look forward to seeing you next week when we talk about friends and family. I believe? Yeah. Okay. forgetful brain. Thank you hearinglosslive.com.