Hearing Loss LIVE! Podcast

Hearing Loss LIVE! Talks Self Advocacy

October 11, 2021 Hearing Loss LIVE! Season 1 Episode 7
Hearing Loss LIVE! Podcast
Hearing Loss LIVE! Talks Self Advocacy
Show Notes Transcript

Boy do we have many thoughts about the importance of self advocacy and hearing loss. We know change happens when we fight for our rights. But why is it easier to advocate for every one else's needs and yet so hard to advocate for our self needs?  Join us at hearinglosslive.com for the full blog on our experiences with self advocacy. 

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Hearing Loss LIVE! talks, self advocacy.  Julia: Hello, and welcome to Hearing Loss LIVE! Today's podcast we'd like to talk to you about self advocacy. We're pretty passionate that you need to self advocate, as you see in our blog that's on our website. But today we'd like to talk about why self advocacy is so important.




can you talk to me about self advocacy and your thoughts on it?


Michele: I can Julia. And, you know, self advocacy is is such an important thing. It's something that I had no clue of, as a kid, I had no idea that I needed to self advocate, just because I had no one advocating for me. So you know, as a little kid it doesn't occur to you. And so I wasn't good at it. And I actually didn't start self advocating until my hearing took such a drastic dip, that I had to figure something out. And part of that is an attitude shift. For a lot of people who are hard of hearing, we tend to be timid. And for me, that was a parent, teaching me to be diffident, not just with my hearing loss, but also in life, you should always put others above yourself. And that's not a bad lesson. But I think I took that to an unhealthy degree, and tried to be more considerate of other people than I needed to be for myself. And so when someone who is hard of hearing, decides that they need to take control and start self advocating, there has to be an attitude shift for a lot of people, we have to stop thinking that it, people are doing us a favor by accommodating us. And we also have to stop thinking that if we ask for something that's not there, we're complaining. And I think those two things are a big thing that people who are hard of hearing have to take ownership of. And for me, that moment came when I was able to look at people who had visible disabilities and ask myself, would I think that they were too much trouble by asking for something that they needed to physically have access to something and the answer was no. And so I had to apply that to my own life and my own disability and realize that it's not too much to ask. So that's kind of where I started with owning self advocacy, and that really started different layers of advocating for myself and I can talk about some of the other motivations I had a little bit later. But I'll let somebody else contribute right now. Thanks, Julia.


Julia: Thank you, Michele. Yeah, there's a lot of layers to self advocacy, isn't there? there's public venues, there's business, your employer, your home? Yeah, there's there's tons. Chelle, what are some thoughts you have on self advocacy?


Chelle: Thank you. Oh, I have a lot of thoughts on self advocacy, and one of the things that popped into my head, while Michele was talking is that this is part of my three parts of being successful with hearing loss. One is, you know, the hearing technology, and I'm talking about hearing aids or even captioning, AI and stuff. There's all kinds of tech, technology, it's not just hearing aids. And the second part is education. You got to learn everything you can about hearing loss, so you know how to present yourself later, right. And this leads up to self advocacy, which is a major part of being successful with hearing loss. You know, we're all, all of us, I think, who are hard hearing know what it's like to be the underdog. So we stick up for other people a lot. And we are willing to help others all over the place and we do it all the time. But we're so mild when it comes to asking for what we need. And in the blog, you can see where I talk about being meek and meek, timid, shy, reserved, holding back all time because I thought the whole burden of communication was on my shoulders. And, and I didn't want to bother other people with my accommodation needs. And then I learned how simple accommodations could be. Like, I need you to look at me when you're talking. I, I use lipreading. So I need you to look at me when you're talking. And as I learned these different things, I kind of put'em to practice in my own life. And then I would start going out, after my family, and I was successful with my family. They were really good. Then I would go out in public, and practice there as well. And I started with waitresses, and grocery store clerk, because they have to be nice to me, right? They're paid to be nice to me. And it worked. You know, they're very accommodating for the most part. I did have somebody in a class A long time ago, say, well, you're not from the east coast, then because they're really rude all the time. [laughing] So you know, out west, it's not so bad. It's people are nice. I'm not sure about back east, I hope to get back there someday soon. So after that, after I found my way through, and publicly advocating for myself and my communication needs, I bumped it up to going to public venues and asking for assistive listening devices. And even though that wasn't really the thing I needed anymore, I needed captions because my hearing loss was so bad. But the asking for assistive listening devices, made other people aware that they had to find them, they had to hunt them down a lot. I was surprised at how often they had to hunt them down. And then they were more aware of people asking for'em. And I was made more aware of how to ask for'em. So those are the simple ways that I started to advocate for myself a little bit better. And I grew with confidence. And I did more things with advocacy, which I'll talk about later.


Thank you. Yeah, why is it, it's so easy for us to advocate for our children with with whatever they have going on in their lives. And, and, but for ourselves, we get nervous and don't understand. I think a lot of employers are well under educated on what hearing loss versus Deaf culture needs, are. They understand really well what a sign language interpreter is, but they really don't understand what CART is. Just recently, AI has become a hot topic, I sorry, my dog is moving around in the background. Because employers still are trying to use it as a gold standard. And the employee is not understanding the meeting because the AI is not captioning correctly, what's happening. And so I think you'll see a movement soon on what CART is more defined. But this is at least an employee trying to to advocate for themselves. And and, you know, it might take a lawsuit before it becomes fully-- I won't go there. I won't go there with my thoughts on it. It was it was really long. But um, Michele?


Michele: um, you know, I think it takes a lot for people who are new to self advocating to get to the point where they're even aware of what's available to them. And you know, I kind of started baby steps, too. I just realized no one was gonna help me and I had to help myself. And so I started experimenting. When I had those little successes it really motivated me and made me feel a little bit empowered and then that just kind of grew. A big shift for me was when I joined the SayWhatClub and I used to write for thier newsletter and Pearl Feder was the editor at that time and she used to give me assignments. And my, one of my first interview assignments was Lauren Stork of CCAC captioning. And I interviewed her and and throughout the interview, I started to take ownership of my being part of the hard of hearing community. And you know, I always felt I felt less knowledgeable and less qualified, than a lot of people to take self advocacy to that next level. But, But interviewing Lauren, and then, about five months later, I interviewed john Waldo, who was a legal advocate for people with hearing loss. And he is a big reason why we have captioning devices in movie theaters in the US. He worked very hard to get that in place. And I don't think it was an interview. But I remember speaking to him in person, and he told me that his biggest frustration was that people work really hard to get accommodations for the hard of hearing and Deaf, and the vast majority of the hard of hearing, don't use them. One thing is, we don't know about them. But even when we know about them, we don't use them. And so that's a frustration. And so after those two interviews, I really took ownership of my being a member of the hard of hearing community. And that was when I started advocating for captioning. Because captioning is my language. I speak English, I communicate in English, I write English. And I'm fluent in English. I just can't hear English when people speak. And so captioning is the access I need to communication. And so that was a couple of years process for me. And hopefully, others won't take us along to arrive at that taking responsibility for being a member of a large group of people who need to be accommodated, and who need to solve advocate but also advocate for their community and ask for what we need. But a big part of that is that educating the hard of hearing community because a lot of people are not aware of what's available to them.


Julia: Thank you, Michele. And you said, when you say you speak in English, you live you, you. You just can't hear the English but your English is your spoken language is one of the things that always has stuck with me. I've heard you say it to people. And I thought, Oh, you know what, that's exactly how it should be if you're talking to your employer, that's exact verbiage you should take to your employer. I I need to see in English. I speak English. English is my language. I just can't hear it. So CART allows me to hear the English language that's being said. I just, I think that's a good way for people to think about approaching their employers. That's always stuck with me. Chelle Did you raise your hand or did I just not see it?


Chelle: No, I didn't, but I can go. I was sitting here think about advocacy and, and how there's infrastructure within society. You know, where we've talked about infrastructure with bridges. Okay, get you one place to the other wheelchair ramps allows people with wheelchairs to go into places. Captions are infrastructure. They allow us to hear what we need to hear to be able to participate. Captions are a bridge. Okay, it's a bridge to keeping us involved. And one of the things that, you know, you hear a lot about is hearing loss and dementia. And people isolate because we don't have the access to public things, or venues. Sorry, I say that wrong, and it's been pointed out to me. But you know, we would be a lot more active if we had captions everywhere we went. We wouldn't be staying home. I mean, staying home and watching TV because it has captions or movies. It's kind of an isolating thing. So we need to get out more they say. That's the link to dementia is isolation. Okay, so keep welcoming us with captions, and we will get out there and participate. And maybe there would be less of it. And that's like, okay, a whole nother topic. We'll go there again some other day. But in the meantime, those of us with hearing loss need to say what we, what we need to do things. Okay, I'm going to go to this party. But here's how it's going to happen. I need it to be in the daylight because I can't read lips are here in the dark. Okay, I need to make sure I'm well rested before I go. Because the more tired I am, the harder it is to lipread. And then I only want to spend about an hour there, maybe hour-and-a-half, and I need to go because my brain is fried. So that's a form of self advocacy is making your needs known.  Michele


Michele: Julia, I just wanted to respond to you. Referring to me saying I speak English, I write English, I communicate in English. I don't want to get off on captioning advocacy, because that's like a whole huge issue all its own. And I've had some good success, there. But the reason I came up with saying that English was my language, I just can't hear English so I need access to English through captioning was a lot. A lot of the reason was because when I would request card, I would be offered a sign language interpreter. And so I would have to tell people sign language is not my language. I wish I knew sign language, but I don't, that's not my experience. And what I need is verbatim captioning for spoken language. And that's the vast majority of us. At least 85% of the 466 million people of the world with disabling hearing loss will access communication through some form of text or captioning of a spoken language. And that number goes even higher, it's probably more like 98%. When you factor in that 2% of the 15 million people in the world who are categorized as culturally Deaf, only 2% of have that number have access to sign language education. So the people who need to access communication, most of us are going to do that through captioning or some form of text speech-to-text. So that's kind of why I had to start saying English is my language. And you know, sign language is wonderful. And you should accommodate anyone who needs sign language. But what I need is English, or my language, my spoken language. And that's what CART is. Real time translation for whatever language you need, and sometimes I think that people who provide accommodations need to look at it as a translation because it is a translation, I won't get off into the weeds on issues I've had there with some groups that I'm part of when I request captioning, but I just want to explain that's why I kind of developed explaining what I needed because people could understand then. That you know, not everyone who is hard of hearing, knows sign language. We're not fluent in sign language most of the time and so that's not going to be a good accommodation for us.


Julia: Thank you, Michelle. I just I, it's always stuck with me that you've been able to come up with that way to think about it. And you know, self advocacy could be something as simple as I can't hear well on the phone anymore. What can we do and an employer helping you get a caption app or a caption telephone if it's a landline. It could be a, it could be using Otter on a one-on-one with your with your employer or your friends knowing how to use AVA at a restaurant with your friends and family. Or Otter. And and it could be, and Chelle I always like your your idea. Do baby steps. Start with what's important to you. Figure out how to self advocate to have a better outcome. And then try the next one and try the next one. And then it's always not so scary. I do want to say, employees really need to self advocate for what they need. And don't stop. You-- If, one of my examples, and I'm not sure which blog it's coming out in is, if you go to your employer and say, I need CART for this meeting, so that I can make sure I'm understanding the training and don't get fired, whatever. And they say, Oh, sure, we'll hire an interpreter. This is a company that knows it has to follow ADA. So the thing is, they just don't know what CART is. And so this is a time for you to explain that. And and and don't stop for the accomedation. Don't be told it's too expensive. I've done the research people. CART cost no more than it does for a sign language interpreter that comes in two people come, one CART provider. So, just keep that in mind. And as family members support, whatever that that hearing loss individual needs, right? We need to be very supportive and not tell them what they should have. We need to help them with their self advocacy and stand behind them. Chelle.


Chelle: Yeah, just wanted to be real short and sweet here and say that we all need to speak up and speak out so that our communication needs become as known as the Deaf community. They are awesome in what they have done, and we need to do the same thing. Start easy. Work your way up. That's what worked for me. I worked up from baby steps all the way to legislation. Yes, I was very nervous when I got to the legislature level, but I did it. It was a good experience. But it started with small steps.


Julia: I remember you when you first went to the legislators. Yeah, it's been a while. It was good. It was good for you to be there and supportive. I can't even remember the bill. But that that's another thing that that we really need to figure out how we can improve our state legislators and our federal legislators on on captions. The bridge thing had me thinking of something Chelle, there's that cartoon, I don't know if you've ever seen it, where they're shoveling the stairs for people to walk up the stairs, but the wheelchair ramps full of snow. And he's like, Oh, no, there's more people that need to walk up the stairs. So I'm going to do the stairs first. But if you do the ramp, everybody has access. So, I can't hear well in an airport. And now you've got masks. I wish they caption everything that happens at an airport. It not only helps the individuals with hearing loss. It helps us with hearing. I almost missed a plane coming back from Pennsylvania because they called off and said Oh no, we're not going to board this plane right now. So I started to walk away I heard that they were talking and just happened to realize, nope, nevermind, we are boarding this plane now. So yeah, I like the bridge idea. It's so important.


Michele: Um, I just wanted to say I'd had a unique experience in that I've never benefitted from hearing aids. And I'm at the profound level now. And so I wish hearing aids on technology had worked for me better. Assistive listening devices only amplified and amplification does nothing for me other than cause me pain, because of my hyperacusis. So there's a lot of value in having an alternative plan. If your technology fails you, you have to know how to ask for something very simple. It might be as simple as people writing it down, writing down what they need to say. And the whole masks with the pandemic have created such havoc for people who are hard of hearing. And I hear a lot of people saying I just stay home. I'm not gonna go anywhere until this whole thing's over with because I can't understand people with a mask. But you can't do that you can't stop living. And so what my unique experience has forced me to do is to remain present in my life and to keep doing the things that I enjoy. Solo travel, all kinds of things I do by myself. I kayak by myself, I hike by myself. I've had to find other ways to communicate with people and and there's a lot of value in that flexible communication. If one way doesn't work, and you don't know what to do, talk to the person say, hey, let's try to figure out how we can communicate, this isn't working for me, and people are very helpful and willing to help you. And a lot of hard of hearing people once their technology fails, they kind of freak out because they don't have anything to fall back on. That's a huge part of self advocacy that I personally want to address. Because I've had to focus on that. And there's a lot of value in having several different ways that you can communicate. So that's a big part of self advocacy for me. Any more thoughts? 


Julia: Thank you, Michele. Any anything else, Chelle? Thank you for joining us today when we talked to self advocacy. I would like to let you know in November we will be having a workshop that is dealing with the holidays and family gatherings. We hope you will sign up and join us and we will talk more about self advocacy for yourself with your family parties this this holiday season. Thank you for joining us at Hearing Loss LIVE! Please see our full blog at hearinglosslive.com and we look forward to talking even more self advocacy next week when we talk to you about CART and automated, aut-- I'm going to call it artificial intelligence, AI, couldn't remember what it stood for, whew, hearinglosslive.com Thanks for joining. Thank you for joining Chelle Wyatt, Michele Linder and Julia Stepp. Next Monday, look forward to cart and AI.