Better known in the hearing loss community as self-advocacy, Hearing Loss LIVE! wants you to be proactive. Being proactive is how you learn your hearing loss truth. It's how you find out what hearing accommodations work for you. And it's where you learn what to do when your hearing accommodations fail.
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Hearing Loss LIVE! talks being proactive.Julia:
Good morning. Hello. Welcome to Hearing Loss LIVE! This week's podcast and blog is about being proactive. Proactive is a new term we've kind of been rolling around. It refers to being self advocate. Chelle, can you talk to us a little bit about how Proactive became kind of a jargen we like to use?Chelle:
Yeah, our friend Gloria and I were talking. You know, we use Gloria on a podcast her past and she's coming up again. Gloria and I were going back and forth. And she mentioned Proactive at some point, and I'm I really liked this term, I think I'm gonna snag it. And like the next week, I had a presentation that I did for the Division of Services for the Deaf and Hard of Hearing and the Hard of Hearing Program for May's Better Hearing and Speech Month. So, I changed my presentation to include being proactive. And this was my first time trying that out on the hard of hearing community. And they took it, they took to it really well. And everybody was nodding their heads. And you know, when you say self advocacy, you know people phase out of that and they don't want to think about self advocacy. They don't want to think about being assertive. So I was like, What do you guys think about being proactive? Can you be proactive with your hearing loss? So people's heads were nodding. And I'm like, Yes, that's my term, then [laughter]. I'm going to use that from now on, an as we were talking earlier. No, let me a back up. So when I was writing the blog piece for this, I looked up proactive and to make sure I had the definition right in my head. But the first thing that popped up that said that being reactive is the opposite of proactive. And it's like, oh, you know, that's good, because we are reactive with our hearing. Reactive? Yes, I did get it right. Sorry, I'm watching the ASR, you guys [laughter]. We are reactive. And it gets tiring. And I think I'll let Michele take over from here.Michele:
You know, in all the years I've been volunteering, when somebody comes to me and asks me, what would you do different in the situation? In a situation they floundered in. One of the first things I tell them is be proactive, don't wait to react, take charge. And that's kind of for me what being proactive is taking charge. Looking back at my notes, I ended with what I think proactive means, and that is leaving as little as possible to chance. When you're proactive, you've educated yourself about your hearing loss, the tools, technology, techniques, and accommodations that help you communicate better. And those are the steps that I went through personally. Fifteen, 20 years ago, I started being proactive, I started slow. It felt like I was being aggressive, but you kind of have to retrain how you look at it. I didn't ask for hearing loss, it chose me and so I need to take control of it. Second, is defining your needs. I had no idea what I needed. And most people who come to me and say what could I have done different in the situation. They don't know what they need. And they say that, um, and the blog, I wrote about a situation where the person said, I don't even know what I needed. I can't tell anyone what I need because I don't know myself. And you have to define your needs. You have to develop effective ways to tell other people what they need to know about your hearing loss and your communication needs. And so the only way you can come at that and learn is to practice. Practice self advocating. Practice being proactive. And then also the other part of that is one thing will not work in every situation and too many people have that one thing that they grab onto and when it doesn't work, they just freak out. So it's that flexibility, you have to embrace being flexible. When one thing doesn't work, have several other things in your tool bag to try and practice. And so for me, that's what being proactive is. And it was easy for me to kind of teach myself that because I was traveling solo a lot. And when you travel solo, you have to depend on yourself, you have to be proactive, or you're not going to get the information you need to get where you're going. And that was one of the best training grounds in my personal life. And I think I'm pretty proactive. I've even evolved to be even more proactive. But I'm gonna turn it over to someone else right now.Julia:
Thank you guys. And I think as a hearing partner, learning what proactive means for somebody with a hearing loss, maybe your family is new to it. And maybe it's been around forever, who knows. But how do you support that person? And so in my experience, it's not take over right? You. Mama Bear wants to take over. But Mama Bear needs to take a step back and say, what do you need help with? How can I learn? I'm going to give it for instance, let's say you like to go to plays, and you like live theater. Maybe you've never had captions at a live theater events, maybe you don't know that that's a possibility. But how do I learn that as a hearing partner, hey, this new tool. By attending the support groups with your family member. By looking it up. I mean, come on, we got Google Google stuff. Google is great, right? Find ways to decide what works and what doesn't. And then when that person's being proactive and calling the theater and saying listen, can we have a live theater caption night? How do I do that? How do you support them, go to those meetings, go with them, show that you will be participating that night that they'd have live captions. Maybe at your local movie theater. Maybe it's learning more about a caption phone, whether it's a landline, or a cell phone, or or learning to use, Otter and Notes, one of the things that always crosses my mind is Cristina Duarte with InnoCaptions. When she does training for staff, and contractors, she uses Zoom, and she uses their ASR, automatic speech recognition. And, and it never, well, it very seldom makes a mistake, like the ones we giggle at. But she's very accustomed to training the Zoom, or whatever ASR she's using, because she grew up in a household with hearing loss, right? So it's some of those little things that I think partners can do. I do want to emphasize, unless it's already your dynamics, don't take over. I do think that will hurt your relationship dynamics if you don't communicate. That's another tool in your toolbox, right? You need to communicate before anger management sets in. And you've changed your entire lifestyle because you don't know. So, you know, I'm always saying get in the know. Know, before you need to know, right? I don't know how to do that. But I'm trying to figure it out. I got lucky in that sense. I don't know. Don't wait to be in the anger management part where you become the babysitter and you're now mad about it. Thiughts? Chelle.Chelle:
I'm gonna go back to being proactive. Well I mean not back to we're in the middle of that. But one thing I wrote down a minute ago was, it's managing our hearing loss. And that kind of people don't understand that either. And managing my hearing loss I used to just say I'm hard to hearing and people would talk louder, but they wouldn't face me. They wouldn't be within six feet. So I'm hard of hearing was just actually stating my disability. It wasn't being proactive. So now I say when I'm in the grocery store, or when I meet people, "I hear enough to know you're talking but unless I'm looking at you, I'm not going to understand you, I use a little bit of lip reading as I go." Everything they know, they need to know about communication, just, I just given them in my little statement. And that's what feels comfortable to me, different for everybody. Michele says it in a different way, but she's kind of similar. And then, you know, being proactive in my communication at home, I was just remembering my husband is going through a tough time right now. And he called me via FaceTime. And FaceTime has no captions yet. And he's upset. So he's all over the place. He's not looking at the camera. He's in the dark and looking away from the light. So his face it shattered. It was just a horrible experience. And, and but he's so upset, I couldn't. I couldn't get him to do what he needed to do. So from now on, while he's, you know, going through this, and he, we need to make a video call. I said, I took charge. I managed my communication. And being proactive. I said, Let me set up a Google Meet. It has captions, and it helps me. So last time, we did the FaceTime, not FaceTime, the Google Meet on our phones, it had the captions at the bottom. Here's the way he is right. He turns the phone around and he shows me the the area he's in and the sunset or the trees or the bugs or he's always doing that to me. And he said something finally, like, I don't see the caption. So I showed him how to get the caption on the phone and he goes, "does this help?" And I go "yes."[laughter] That's that's me, the fun me and my husband have.Michele:
Um, you know whether, whether you're there now or whether you remember what it was like to be there, being hyper vigilant, always watching, waiting for the bottom to drop out of communication is exhausting. It really just depletes you. And so when you learn to be proactive, you're, you're conserving your energy and as a lipreader, it takes a lot of concentration and energy to lipread. So the way that I'm proactive as a lipreader is I tell people up front exactly what I need. I used to just say I'm a lipreader, that that leaves them to guess what that means. And that evolved. I'm a lipreader, I need to see what you say in order to understand you. Then I kind of graduated to what's going to happen if I can't understand you. So it became Hi, I'm a lipreader, I need to see you speak in order to understand what you're saying. But it doesn't always work. So if you need to write to me that's okay. I've pretty much told them everything they need to do to communicate with me. And now since the pandemic, and with masks and everything. I use the ASR speech to text on my phone, the captioning apps on my phone a lot. And that is a huge help. And that, by not waiting for things to go wrong, or or not, you know, just depending on other people to make themselves clear. And then when it goes wrong, I'm all flustered. I don't do that anymore. I tell people up front, I alleviate the need to expend all of that energy of being hyper vigilant and always watching. Just say it from the start and get it out of the way and you're done. I mean, it's just so simple once you figure it out.Julia:
I even think as people being proactive, instead of reactive, I think about businesses, business offices, employers, medical settings, whatever. The more we're proactive about our hearing loss truth, the more they understand the different technology and needs for each individual. I think ADA has done a lot of great things and I think HIPAA actually might, sorry, I've covered my face HIPAA might also be involved with some help with English as a second language. So, So I think a lot of people are in any industry are very, very aware of those things. But until we're proactive with letting our businesses, our employers know what our true needs are for our hearing loss, they're just not going to be in the know, they're not going to reach out and, you know, they're just not. That's kind of some of the downside, I think, to the aid, how the ADA is written. I think I've said this before, it is actually written to help a business, per se, it's to help consumers too, but it is the least amount of work a business has to do, let's put it that way, right? At the cost. And a lot of times, businesses say, oh, that's undue burden. And somebody might say, oh, okay, I don't want to be a burden. So I'm not gonna push it. And the truth is, it's probably not a burden. Knowing some of the stuff like what is an undue burden? What is that number? What is the employee amount before somebody, you know. If a small business like us can hire CART for Talk About It Tuesday, there's not many businesses that couldn't afford to do something with one of their remodels, I guess, is what I'm gonna, I'll leave it there, I'm done.[laughter]Chelle:
Yeah, we'd like to show that we want to be accessable. So that's why we make sure everything is captioned. And sure Julia does a lot of work there to help make it happen. But when when she's done the show, she can't do the CART. So we, we do what we got to do, and we hire someone. So one in five people have a hearing loss. Not everybody's gonna disclose it, some people are able to blow it off right away, they just can't hear some things. If you have a conference room, and you're doing the whole audio/visual thing, incorporate an assistive listening system, right there. It's, it can be incorporated into what you have already, sometimes too. Check it out. I like to say go to Listen Technologies, because they have a variety of systems for assistive listening. Different infrared, they have FM, they have the Wi Fi based assistive listening. So you can go to their website and learn a lot there. Start thinking about that. That's being proactive, because more and more people are getting a hearing loss, hearing loss. Be proactive. Figure people are going to need it. And heck, maybe even you yourself could use it. And Julia can kind of talk about this a little bit from our SayWhatClub experience a week ago, a couple weeks ago.Julia:
Yeah. And I don't know why we haven't thought about it before. I was thinking about that the other day, maybe in Sacramento, we had the loop and an overhead. So maybe I was using the overhead. But it dawned on me at one point where I was set up, one, I'm watching the speakers like this. So I'm seeing the sides of their face where I was sitting. Sorry, timers going off. And we weren't, we were just using the loop. So I love y'all, but you're loud when you talk to each other. So people are talking like this. And I'm trying to hear the speaker up here who's only looped into everybody and it dawned on us. I think it dawned on Chelle, we need to loop you in. We've remembered to loop the vendors in because a couple of them have hearing loss so Chelle. Chelle did the loop by the way for the SayWhatClub so if you need a loop laid, another expert to help you with, anyway so she laid it --and she laid it good. It was also very good room. But um, so she looped everybody in and it was like oh now why did we lose me because then I could have just use a headphone setup, Minno or one of those and used the loop and I love the loop. I've used it at the Sanderson Center and thought oh my gosh this is so much better sometimes when I'm there locally at different, different things. Because it really does shut out the extra sound. So Vulcan hearing people and I still enjoy anything that can allow me sound straight to my ears and cut out the external noise. We are coming up on our 25 minutes. Any other thoughts on how to be proactive?Michele:
I think we could go on and on an on--Julia:
--another 25 minutes, but I will stop here. [laugher]Julia:
We could go on forever. We could have a whole panel on proactive, I think, in different ways to make that happen. Well, we hope this helps you be proactive in something you do this week. And if you are, report back to us, tell us how it went. Maybe you need more help with it. Maybe it went great and you want to share it with somebody else who might need it in the future, or come to Talk About It Tuesday. Let me look at the date real quick, without my glasses. So it's a hard guess. But it's the fourth--no, October 4, will be our Talk About It Tuesday. We weren't getting ready to tell you September's but that's passed already. So join us for Talk about it Tuesday, sign up for our E newsletter. It always has the link for talk about a Tuesday, as well as information on what's coming up in the month ahead. Chelle takes time to find out some interesting facts. And we sometimes give some personal insights to things that we've experienced with our hearing loss. We only give you the E newsletter. We promise not to spam you we promise not to sell it, we promise not to give it to others. It's really only used for that. If you can, we are in the middle of our fundraiser. We are crowdfunding to help 2023 be a success. We are only trying to raise $6,000, which is about what it takes for us to have website help with that sort of stuff. And do these free podcasts, keep our Talk About It Tuesday free because we do hire live human automated captions, the human caption, I want to term to Angie. And I'm never going to be able to say her last name. Fuago, Angie, you know who you are. Anyway, she's coined that term. So I want to give her credit. We'll have events. In November, we'll have our family gatherings. That's always a good one to have a way to maybe practice some proactive because this is going to be where you have lots of people and you're going to need to have some tools in your toolbox. So join us for that. Watch on our site for when that will be. And we hope you join us and help us you can buy us a cup of coffee. Tell us what you think. What you'd like to see. What are you struggling with. And you can get a bill of rights with that because hearing loss comes with the Bill of Rights right? Join our lipreading class. The concepts class is very important whether you have a hearing loss or you're hearing. Truth be told, even if you don't have somebody in your family with hearing loss. The lip reading concept class is built for anybody who wants to have better communication overall and understand what's involved so that people don't, you know, get in your face and over exaggerate their words. Join our Patreon you can see some of us doing one of those. Anyways, we hope you join us. Talk to you later. Crowdfunding now available for Hearing Loss LIVE! at Buy Me a Coffee or Patreon. Help us by donating today or visit heartinglosslive.com and share your thoughts.