Breaking Barriers: The intersection of hearing loss, advocacy and innovation

Adam: Welcome to The Search Bar. I’m your host, Adam Sparkes and on today’s episode, we sit down with Stacey Lim, associate professor of audiology at Central Michigan University. Stacey shares her personal that led her to a career in audiology, her love of fashion as it relates to hearing accessibility, stigma surrounding hearing loss, and advice for people considering a career in audiology. Stacey, thanks for coming in today. It's good to see you again and I am excited to kind of talk with you a little bit about yourself.

Stacey: Oh, I'm very happy to be here. I'm really happy to be talking about myself, I guess, with you.

Adam: Did you get really uncomfortable all of a sudden?

Stacey: I'm not new to doing that, but okay.

Adam: It seems then your childhood experience is what led you to audiology and advocacy, right? Tell me, as you were growing up before you were a professional, what were some of the biggest hurdles or frustrations that you had just gaining access as somebody with hearing loss?

Stacey: I think probably the biggest one was probably getting into elementary school because what my parents tell me, my local elementary school did not want me in the first place and the local parochial school did not want me, which is where my mom wanted me to go and they felt like that, in the parochial school, they shut down, they didn't want me because I had hearing loss and there was a lot of pushback from the local elementary school because they felt like there was another program in the neighboring school district that had a program for kids who are deaf and hard of hearing. But that program was a sign language speech program. But I grew up using spoken language. So, I would have to learn a whole new language in order to go to that school. And my parents were, like no, we want to stay in our community. So they actually fought really hard for the school and they went to a meeting. I was not there because I was too young, but my parent went into this meeting with, I believe, the principal and the speech and language pathologist, and some other people involved in that school and the school psychologist and everyone was like against me going except for the school psychologist because she was like, “no, I’ve talked with her. She’s smart enough she can go for the school, and she'll do well.” So, they actually made an agreement saying that “okay, she can go here for first grade and if she doesn't do well, she’ll have to go for the other school.”

Adam: Oh wow.

Stacey: But I did really well.

Adam: Yeah, you showed them.

Stacey: Yeah, I showed them. I did really well. I grew up in advanced classes, I don't know what they call them, but advanced classes and did really well in all my classes and they were able to get different assistive devices for me so I could hear the teacher better and that kind of thing. I think that's probably the biggest challenge that I can think, is of getting that access to a school that would be good for me to go to.

Adam: Do you find even now that for people that are differently abled that those options are very limited? Because when you tell that story to me, what I hear is when we have somebody who has hearing loss and this probably applies for other disabilities, we have this very narrow path by which we're able to pull them forward. Is that something that is-

Stacey: I think that a lot of-because there's such a wide group of people and people who are definitely hard of hearing or people with disabilities-that there are different kinds of expectations some people might have and maybe they don't really recognize that maybe all of these people have different kinds of needs and different need, different kinds of support or maybe different accommodation that allow them to do really well or be supported in the environment that they're in.

Adam: So I'm going to stick on elementary school for one more question and just edify me because I don't know, is the concern for people with hearing loss that they have a hard time keeping up, that you wouldn't be academically in line with your peers in first or second grade? Is that a common problem?

Stacey: Yeah, I think there's a lot of issue with you know, making sure the kids have access. Making sure whether visual access or auditory access.  Making sure that can hear their teacher or see their teacher or making sure they understand all of the concept that are being taught in class. And my parents were great at making sure that I would have that kind of access. My teacher in my school was so good, they were really supportive. They made sure to wear the microphone, they communicated with my parents to make sure that we're on the same page that I was keeping up and making sure that I would not fall behind, so to speak. And I think that’s also one really good part, making sure that parents and teacher and whoever working together on that team are all working together in a collaborative effort because it really takes a whole team.

Adam: How much, now as a professional, how much does that experience for you when you were at that age kind of shape, the way you approach your clients to come into the clinic and things like that now?

Stacey: I think it's really important because I do see kids in the clinic too. I also see all ages, but I think making sure that people know their rights and know what they can ask for and advocate for an educational audiologist for example, or asking for, to meet, to develop what we call an IEP.

Adam: Yeah

Stacey: So, we can develop a plan that's going to be really good for that kid or talking to them about different kinds of accommodation and strategies they can use to make sure their kid has the best optimal access to what they're learning. And that's really important to me. I also like to make sure my teenagers know that too because they're going to become adults with hearing loss, too, one day.

Adam: Yeah, well yeah, you talk about the IEP and you talk about how involved your parents were and those two things really have to come together for people that are in school regardless of why they're on that IEP, right? I mean the school has to be helping and the parents have to know whether or not that child is getting the right service, right?

Stacey: Yeah. And if they're not, then how can we review the IEP to-let’s work together in time and find a way that’s going to be a good accommodation or start of your plan or something.

Adam: Do you find that people struggle to advocate for themselves or their children? It sounds like your parents were on it.

Stacey: Oh, they totally were. I think some people are not comfortable advocating and I think that's also something we as audiologists should do. That's why I tell them-my students-how to teach our patient to be their own best advocate. One the best way to do that, is to make sure they learn about their hearing loss, make sure they understand their hearing loss, making sure they understand different things, you know, different technology or different legislation or whatever that's important for them to do well. They have to understand what's available for them.

Adam: What do you find, where's the knowledge gap for most people when they first come in to get treatment for hearing loss? Is it the technology or like you said, is it the legislation? Where do they typically need more knowledge?

Stacey: I think for most parents if we’re looking from a pediatric standpoint, the first time any parent meets a person who is deaf or hard of hearing, it might be their own baby. So knowing about hearing loss to begin with and understanding the consequences of hearing loss. I think really that’s the first step and understanding the different technologies that are available or understanding what are the next best steps for that individual, whether a kid or an adult or teenager or whatever.

Adam: How do parents, what's a normal way, I'm sorry, let me rephrase that. How do parents commonly notice that they have a child with hearing loss or if you're an adult, how do you notice if you're starting to have hearing loss?

Stacey: Well, for, right now all the states have newborn hearing screening. So if you have hearing loss, you’re going to find out pretty early on.

Adam: So they should catch it.

Stacey: They should catch it.

Adam: Yeah.

Stacey: I mean something that happened later might be something where they start losing their hearing in early childhood. It might be, they might notice they're not developing speeches well, they're not developing languages well, they're missing things. Or maybe their teacher notices it or a friend notices that they're not communicating very well or something. They're not responding well or that kind of thing. For adults, usually, it might be other people will notice it. So-

Adam: It's like when my mother-in-law makes the TV get louder and louder over the years and we were like, it might be time.

Stacey: It might be, yeah, pretty common.

Adam: What are some of the things that might surprise people that are just out in the world for folks with hearing loss? What are some of the challenges that we might take for granted as a person with normal hearing?

Stacey: I think a lot of people have a lot of assumption that- this is something that happened to me a lot, I'll introduce myself and say, you know, “I’m deaf, I'm hard of hearing” and the first thing that comes out is “I know sign language or do know sign language” that thing. We are such a diverse group that not everybody who have hearing loss or are deaf or hard of hearing uses sign language and not all of them use spoken language either. Some use a combination of both. And I think that's a really big assumption is that all of us communicate in one way. But we have such a wide range of different kinds of experiences that people don't really expect that at all.

Adam: Less people with hearing loss use American sign language than I thought. I think I was over in the Carl Center this fall and somebody mentioned it to me, I don't know if you know the number but it, it's not as prolific in the hearing loss community as you think or even in the deaf community. Is that correct?

Stacey: I think so. I don't know the number. I think it’s because there's so many people who lost their hearing later in life, they don't know the technology we have, people might have made decisions to raised their kids using spoken language, some might have chosen sign language or a combination of both or different kind of things. But I think, because it's such a diverse group, there's so many ways that we communicate.

Adam: Let's talk about that technology and helping people with hearing loss communicate too. What are some of the advancements that you've gotten to see throughout your career and some of the exciting advancements that are upon us right now?

Stacey: Well obviously hearing aids have changed a lot. As a kid we used to have-my first hearing aid was like a box and wires that went up to my ears. And then I wear behind-the-ear hearing aids now. The other advancement that we have, and also with the newer technology, there's a lot of digital processing. It used to be analog. So now it's digital. So there's a lot of things hearing aids are doing now. There's a lot of AI technology in hearing aids too, so they help people to understand things, like maybe background noise with different kind of difficult listening environments. Cochlear implant's have come a long way. I have a cochlear implant too. I got an implant when I was 18 years old and they come such a long way since I've gotten them and even when they were developed back in what, 70’s, 60’s, 70’s? They were, they've come so far and gotten smaller. They’ve incorporated more different kinds of technology. So things are a lot clearer. A lot of work and development in Cochlear implant and then even stuff, like texting. I remember when I was probably in college, I don't remember how old I was. We went to the Philippines, because my mom’s side, my cousin lived there and they were texting. We didn't have texting here. So we came back we were like “can we buy a phone that has texting” and the cell phone people were like, “no, we don't have that here.” It didn't come until three years later.

Adam: Oh come on,

Stacey: It was amazing. So, we can communicate through texting and now we got FaceTime and you can turn on captions. Captioning was amazing. It kind of came up. You know, it became a really big thing when I was in eighth grade, all of a sudden can watch more TV and understand what's going on.

Adam: Oh, because closed captioning’s on broadcast television at that point.

Stacey: Yeah, I mean before that my favorite movie was the subtitle version of The Magic Flute because with subtitles on, I knew what was going on.

Adam: Yeah.

Stacey: People are checking it out from the video store, they're like, “okay, here's the kid checking out The Magic Flute.” But it's because I could understand it and read along. But now I can, turn on Netflix or I can watch whatever's on the TV.

Adam: Do personal devices that play a huge role in the technology because it would seem, I was in France this summer and Google translates incredible. I was just reading everything and then being able to hear back how it's pronounced just like-I imagine for people with hearing impairment, that must be massive things like that.

Stacey: Yeah, it's amazing. I have Google Live transcribed on my phone, this alternative for Apple phones, but it is amazing because I can hit a button and point it at somebody and have them talk and it’ll transcribe, not a hundred percent perfectly, but pretty well, what they're saying. That came in really handy during Covid because everyone was wearing a mask, and you got people wearing a mask behind the plexiglass. At the store like, “okay, I can't hear you because-I can't hear your voice and you got a mask on and it’s noisy here. And I'm like, can you please repeat that?” And they would repeat it for me and it helped a lot because it made it a little bit easier to understand when the listening situation was less than optimal.

Adam: Yeah, I can't imagine what an amazing step that must feel like to have, because I mean 15 years ago-

Stacey: Oh no.

Adam: Yeah, no shot. Not if we had to be wearing the masks over our faces.

Stacey: And I've never been more grateful for technology. I've never been more grateful for my hearing aid, my cochlear implant and all the work my parents put in because that was like, it really was a horrible experience. Everyone covered up. You can't hear as well because the masks filter out sound.

Adam: Were zoom meetings, like virtual meetings difficult?

Stacey: Oh yeah, because there was a lot of lag time too. And some people turn off the screen and the captions weren't really great at that time. Better now. Or some people have, like, we see their eyes and up with nothing down here, then people are talking over each other, it was a mess.

Adam: Yeah. It's funny to think how fast technology will change when it's pressed to do so because at the beginning of the pandemic, I know a lot of us were spending time in virtual meeting spaces for the first time with any real, real substantive we weren't.  I was stuttering my way through that one. We weren't using them as much before. And closed captioning also strikes me as something that came a lot has come along a lot. I'm going to rephrase that man.

Michael: Come on, old man.

Adam: Come on, old man. Closed captioning also strikes me as something that really came a long way in the last five years. The technology that I know we use in this building, it has evolved so rapidly and it's become such a good accessibility tool that you almost expect it now. Which I imagine also feels good for people in the hearing loss community. Just because I don't have hearing loss and when I see things that don't have close caption now I'm like, what are you doing?

Stacey: Great.

Adam: I want to read it.

Stacey: Yeah, it's great. Or somewhere, like at a restaurant that’s got all the TVs, you want to know what's going on too.

Adam: Right?

Stacey: Yeah,

Adam: Absolutely. I mean the TV in my living room has it on all the time and no one in my house currently has any hearing loss, but I don't want it cranked. So I use it all the time and it works very, very well. And I've noticed that since 2020 to now, it seems like it's quicker and it seems like it's more accurate. The auto ones are.

Stacey: Yeah, I think they're probably using some AI technology and some data flow, I think. But I think it really opened up a lot more in terms of understanding what's going on in the world. And also, by the way, I don't use it very often because I can use the phone with most people. There are some apps you can use. So you can make a phone call. You can have a caption, too.

Adam: Oh, just read while you're talking.

Stacey: Yeah.

Adam: I need to get my grandmother that.

Stacey: Yeah, I'll give you the link.

Adam: Oh, you'll have to give me the, because my grandmother, I almost exclusively text her during the week because when she picks up the phone it's just all bets are off. She takes the hearing aid out 80% of the time anyway. Which sort of leads me to a question too, which is that when it comes to all the technology that has kind of given people access to hearing, a lot of that ends up being preferential too, doesn't it? And I know I've heard folks with hearing loss talk about the shock of gaining much more hearing and sometimes not really wanting to adjust to it very quickly.

Stacey: Yeah, it's because your brain hasn't heard it-

Adam: Yeah

Stacey: For so long or a completely new way of hearing. For cochlear implants, you're no longer using your outer ear, you’re directly stimulating the auditory nerve, all electrical signal your brain like, well this really different, it sounds different and I've got to figure out how to make it sound like people or music or whatever. When I got my implant and I got turned on, it sounded like R2-D2.

Adam: Yeah.

Stacey: It was a little weird and a little frustrating in the beginning. I'm not going to lie. But after a while you brain figures it out, then we can hear a word, we can hear a couple words or sentences and it becomes natural to you. But a lot of that has to do also being-making that effort to wear your hearing technology, whether it’s hearing aid or a cochlear implant and practicing with it. Whether that’s, “well I’m going to turn on the TV and I'm going to practice listening without caption” or “I'm going to practice with somebody or I'm going to practice using a computer program.” There are different ways people practice. And I did, my mentor, Don, who I talk about, he -his name is Don Goldberg, he’s an audiologist, an SLP, an auditory verbal therapist, and he was one of my professors in undergrad.

Adam: Oh really?

Stacey: So, he gave me auditory training one-on-one my first semester there.

Adam: Oh, that's great.

Stacey: And that helped a lot. And my mom of course, and dad are very dedicated. So they made sure I practiced, listening with them.

Adam: This-I genuinely don't know. Can you turn a cochlear implant on and off?

Stacey: Yeah, I can turn off. I take it out. I won't hear you.

Adam: Yeah?

Stacey: Yeah.

Adam: Just leave me alone.

Stacey: Leave me alone, I'm going to bed. I won't hear it. I sleep through the night.

What do you think are the most important accessibility changes that still need to happen in public spaces?

Adam: Yeah, so there's some superpowers there, too. Yeah. In terms of, let's go back a little bit to the devices and stuff. In terms of public spaces, what needs to happen next? What are the things that you think public spaces could do to accommodate people with hearing loss more than they currently do?

Stacey: Well, I'm thinking about restaurants right now. They're super noisy. One, the music is really loud and they use a lot of reflexive surfaces. So we have you know a high ceiling with no acoustic tiles and no carpet.

Adam: Like in here.

Stacey: When there’s a lot of reverberation, it increase the level of background noise. So what do you do when there's more noise? We talk louder.

Adam: Yeah.

Stacey: So, we have loud music, we have reverberance spaces. We have other people having conversations that are really noisy. So maybe turning down some of the music or maybe having acoustic tiles or paneling could help absorb some of that sound. I think that's one thing. I think even stations can have more access, what we call looping or other kind of assisted technology that people can hook themselves up to. For example, Grand Rapids Airport, has a loop. We can click your hearing aid or cochlear implant and you got a program, so we can hear the announcement, or whatever your need to hear. We have one on campus in the Bush Theater and theater in the library, they are loops. So if the hearing loss you can push a button on your hearing aid and you’ve got a program set up and can hear people better.

Adam: Oh wow. I didn't know that.

Stacey: A lot of people don't, and I think that’s part of the issue. People are not aware of what's out there.

Adam: That's really cool. I just assume I know everything that happens on campus because my ego is really big. I have a friend who works in this building actually, and she has a friend who's legally blind and we went to the movies two years ago with him and I was pleasantly surprised to see that when we went to the movie theater here in town that they have the device that screen reads for the person who's got vision impairment. So he doesn't see very well, but it narrates the film, which I was like, wow, this is really cool. I would've had no idea. So I mean it seems like the public is sort of meeting up with people on these things.

Stacey: You know what, there’s also captioning available at the theater. If you go for the local theater here and pretty much all theaters that are digital production, you can request for a captioning device.

Adam: Is it like a little-

Stacey: Thing you put in your cup or some of them have glasses. The local one has a little thing you put in the cup with the little screen. So it can read the dialogue.

Adam: Oh and it just runs it across. Oh, that's excellent.

Stacey: It’s awesome.

Adam: Yeah, it was funny you mentioned to me the kind of wash of sound that's in certain places and it struck a very recent memory. I was in Target. Just a few days ago and the music went off. It turned off and it was probably 9:30 and it was so quiet in Target that as I was walking through the aisle, I had this moment where I was like, it's normally so loud in here, but it didn't dawn on me because I'm used to it. It doesn't necessarily have an effect on how I shop, but I can imagine how relieving it must be when those kind of sounds go off. Because for me for a minute when it went off I was like, oh wow, I am not listening to all of this stuff happening. They must've shut it off early or something along those lines. But yeah. Wow. I mean I assume you've been into the, I assume you have, is it Sarah's lab, the one that's got all of those-

Stacey: Yeah

Adam: And when you go in there, you can have this very hushed conversation with people because there's nothing reflective in the entire room.

Stacey: It's very quiet, so it absorbs all the sound. And that way you can hear people better.

Adam: Yeah.

Stacey: Yeah. It’s great.

Adam: I should clarify, this is an audiology lab here on campus at CMU that is incredibly sound treated so that they can, I think they test accessibility devices and things like that in there. Or they do tests. They might do hearing tests in there.

Stacey: She does a lot of noise testing, video game and levels of noise. So she's trying to-

Adam: They have the virtual things that do virtual reality in there. Yeah, I guess it never really, that never struck me as an accessibility thing, but now that you've mentioned it, I'm thinking about these experiences I've had where it's so strikingly different to be in a space like that or just Staples here. If you ever go into Staples, how different your footsteps sound when you walk into that room empty. And again, I should clarify, Staples Auditorium is where the music performances take place here at CMU and it's a very well put together room in terms of the acoustics. And it's quite quiet when you walk through the main space

Stacey: And even your home, you can also even do things in your home to make it accessible for, even for your mom, you could make sure you have carpet and drapes and start covering your sofa and that kind of thing. That helps absorbs the sound too.

Adam: I can get her some stylish sound pyramids. Just have the ceiling.

Stacey: Yeah, all kind of things.

Adam: I've noticed that they, they make a lot of sound absorption art now as well because-I actually thought about that in my bedroom because my closet backs up to my daughter's room and sometimes she's blasting music in there at night and if I'm working on my computer and I'm like, I need to get a painting that's made out of foam.

Stacey: That's probably a good idea.

You're passionate about fashion. What's your experience between the intersection of fashion and function?

Adam: They make them. They do. It's pretty neat. So here's a really clever transition. Let's talk about your relationship with fashion and accessibility. Since I'm talking about bad foam paintings to soundproof my wall. Tell me a little bit about your relationship with fashion and accessibility.

Stacey: So when I was a PhD student in Ohio in Kent State University, I was in a stat class. Somebody became a really good friend mine and there was another PhD student, at the time who was in that class with me. And I happened to be knitting something for a long time-period, between my classes so I was knitting something. So of course, being fashion, she asked me more about what I was doing and we became really good friends. And we wound up liking each other a lot and Tamika and I were like, well, we like each other but you're in fashion and I'm in audiology, how do we do something together? And our first original project was to look at teenagers who have hearing loss and the kind of-what they want out of their hearing devices in terms of sound or the way they look. So we did that study, interviewed a bunch of teenagers and we had them design their ideal hearing devices. We got kids wanted really invisible stuff and we had kids who were like, “okay, let’s go all out and be like Betsy Johnson and have LED lights and all kinds of wild stuff on there.”

Adam: Just gold.

Stacey: Bold. And I'm like, I'm that kind of person too.

Adam: Big Nautilus.

Stacey: Yeah, I love fashion. But anyway, so we took out, we presented at a fashion symposium on fashion and health and while we were there we listened to talk about fashionable prosthetic devices like leg or limb and that kind of thing. And we're like, I think maybe there are more than just hearing aids. So we started looking to see what's out there in terms of accessible fashion or really cool looking stuff for people who have disabilities. And we found a market, really niche market for people who are wheelchair users. There’re a few designers or there’s people who are 3D printing or making really incredible sculpted artificial limbs and that kind of thing. We started planning, looking more into it, like, you know, maybe we should have a museum exhibition. So we actually made one, we started in Ohio, there's a school of fashion at my alma mater there. And we had amazing museum exhibition, we had cane and wheelchair devices, we had limbs, hearing aid of course and cochlear implants and for clothing for people who have different kinds of physical disabilities. And then we brought it up here to CMU a few years later. And I think it's so important because fashion is how we express ourselves. What we see-how we show the world who we are. It's a very visible, tangible thing for us and for me, like a person with hearing aids, I grew up with beige hearing aids. They are usually boring. I don't think I'm a boring person. I like a lot of color.

Adam: No, look at the glasses, look at the purple, look at the color.

Stacey: Yeah, I love color. I was so excited. I was 18 years old and I got my first pair of non-beige hearing aids and they were purple. It was amazing.

Adam: Must have felt great.

Stacey: Oh, it felt great. And I have silver now, but then I have fun ear mold for the, you know sparkly. They've got a little playing in them, so why shouldn't I also show off my hearing loss, it's part of me.

Adam: That's awesome. Yeah, I mean what you wear is the first way you communicate with people a lot, a lot of times, right?

Stacey: Yeah.

Adam: I mean it might be your smile, but a lot of times you're saying something right?

Stacey: Yeah, definitely.

Adam: Yeah, I'm usually saying I want to disappear into a forest with all my earth tones, but-

Stacey: Well, you got cool glasses.

Adam: I try. We were talking about glasses. Well when you first came in. Yeah. I mean that is something, I'll get comments on glasses a lot. I'm sure you do as well. And it's a conversation starter. It's such a great way to have a connection with somebody. So I can see this where if that fashion can also tell a little bit of a story about you that's starting a conversation that you don't have to feel totally responsible for all the explanation. It's there. You're wearing it, right?

Stacey: Right.

Adam: If it's some kind of an accessibility device that is not just medical, it's part of the pizazz.

Stacey: And then also where you can belong, right?

Adam: Right.

Stacey: So, if you think about clothes that maybe were not designed to people who are seated then no, your pants are really low, you sit all day. You might feel a little uncomfortable. But thinking about the cut and how they fit and then how clothes that look like anybody else. And one of my favorite moments was, we got this beautiful leather jacket that was designed for wheelchair user.

Adam: Yeah

Stacey: And I'm like, I want this jacket but I can't wear it. Not made for me.

Adam: It's not going to fit you.

Stacey: Yeah. What does it feel like? Because you don't want to be excluded from what looks cool or what would make you feel like you or what would make you feel like you belong. As well as maybe a conversation started with a conversation starter kind of person.

Adam: But you're right, it's that comfort. It's feeling like you're not bending over backwards to make something that is normal for everybody else, feel normal for you. Right? This works for me. Yeah. I mean it's that accommodation, that personalization that must make people feel included.

Stacey: Yes.

What are some of your favorite examples of brands or designers who are making fashion more inclusive - or devices more accessible?

Adam: That's awesome. Who's doing that well? Are there big companies in the fashion world? Who is leading the way on stuff like that?

Stacey: Well I think some of the ones I've seen come up a lot is Target.

Adam: Yeah.

Stacey: Target has had-they do a lot with the kids. So they have had some really cool adaptive kids clothing and Tommy Hilfiger . And there are some other, I'm want to say cool. But there's some other bigger names out there that have had lines of adaptive clothing. There are also some designers who are not part of that, but they have their own individual companies, I guess they’re small businesses and they're really cool. There's some really cool stuff out there.

Adam: What surprised you? What have you seen recently that caught your eye?

Stacey: I'm sorry?

Adam: What has caught your eye?

Stacey: Oh gosh.

Adam: Not to put you on the spot, but I'm putting you on the spot.

Stacey: I think somebody…there is a great guy in Bay City, he’s a prosthetic limb person. I follow him on Instagram. He does the coolest limb, like cover and he actually worked with Threads for one of our events here, Disabled Beauty. And he had this really cool leg and it looked like a robot, robotic kind of leg steampunk thing and had lights on it. And he just posted something on Instagram where he turned his leg into a snow globe for Christmas.

Adam: Wow. So it's got this falling snow it and the whole shot.

Stacey: Santa Clause and snowmen. He’s got like tinsel, it’s covered in tinsel. Really cool.

Adam: That's really fun. And how long have you been running that show?

Stacey: We ran, I want to say in the mid 2000’s. It’s not in person anymore. But we do have a website that people can go visit. They can see the pictures of things in the show. We returned everything to the lenders because some of them were their own personal item. So

Adam: We'll put a link, we'll put a link in the YouTube description here.

Stacey: Awesome, that'd be great.

How can people be better advocates for accessibility?

Adam: So for you, when it comes to kind of just all of your advocacy and accessibility, what would you tell people who want to be better partners? Be better advocates for people who might not have as much access to them to fashion, to public spaces, to professional spaces? What can I do? What can Michael do to help out?

Stacey: Well that's a really great question. So we are thinking more about legislative or you can contact your senator and representative, but we are looking on a personal level, you can try and find out what that person needs from you and maybe that answer might be how can you communicate better, so you can work together as partners to say, “okay, what can I do?” And maybe learning about the situation that would be best for them. Like my husband he’ll try and make sure that we're in a place where I can hear him better, if we go to a restaurant. Or one of my favorites, we went see Weird Al and we got really bad seats, we couldn't see anything. I mean literally could not see anything but Weird Al’s feet because all the lights were blocking everything and he’s like “I’ll be right back” And he went down and he talked to the people at the box office and he got us right down in the orchestra level. So just being-kind of, find out what they need and being aware of “let's turn on the caption for you so you can understand what's going on” and that kind of thing. So making sure they have access to that world or maybe using an app if they have a hard time, finding out what's the best way to maintain that communication because connection is so important. I think that's the first thing.

Adam: Yeah, not giving up on it, making sure you can do it. And then I hear sometimes from folks too, it's not needing a huge overture either, right? If we're having a hard time understanding, just asking, can you understand me?

Stacey: Can you understand me? Is there something I can do?

Adam: Yeah

Stacey: Or knowing different ways, different strategy, maybe moving closer to them or maybe using different words and not over enunciating but maybe slowing down a little but making sure they can see you. We want to make sure-or maybe moving your quieter area and to kind of think what you can manipulate to make sure that they can communicate well.

Adam: Is that acceptance when you meet a stranger or a public person important or do you think it's important for other people with hearing loss? Because I imagine for a lot of folks there must be moments where you're like, I don't want to bother any people. Especially in the Midwest, we get so polite. I have to imagine that that's a barrier that people create for themselves that I don't want to be a burden, therefore I'll say nothing or I’ll-

Stacey: It's really hard. I think it's really hard for a lot of people to advocate for themselves and that's something I have to learn too. And no some, most people are really kind. They understand you need something that and say “you know what I have hearing loss, can you please repeat that? Well can you say it in a different way? Well did you say such and such?” Because we know what you think you heard then the person says “no, I said this.” Then the really good strategy, there's a whole bunch of them that people can use to try and facilitate conversation. But it's also really hard for some people who feel like, they feel like it can be difficult or they're going to be embarrassed or uncomfortable telling people that they didn't understand them. That's part of self advocacy and this skill that people have to learn. And that's why I say we have to make sure people know about their hearing loss and what they can hear, what they have more difficulty hearing. And that way we can grow those skill.

Have we become better at accommodating people with disabilities?

Adam: Do you think we've become better at accommodating people as a society? I know that the technology is better and certainly my awareness of people's different level of access is there. But are people better? Do you think people have gotten better at just accommodating folks who need accommodation?

Stacey: I think some people are, some people are not. But I think some people are really great and they want to make sure that you feel included. I see that in my students. I've had-during Covid, some of my students were fantastic. They did what they could make sure I could understand them when the situation was horrible. And I think it goes a long way. And of course, there are always going to be people who are going to be…you know what I don't need to be around that, I don’t need that kind of energy.

Since this episode airs during National Speech-Language-Hearing Month, what do you think is most important for people to know about hearing health?

Adam: Oh geez, this is good energy we have here. This is good energy. So since the episode's going to air during National Speech, Language, and Hearing Month, what do you think is important for people to know about hearing health? Either theirs or others?

Stacey: One, make sure you got your hearing tested. Sometimes it can be overlooked a lot. We always say change your smoke detector battery once a year, get your eye check. But hearing is often overlooked. And I think because it's so-for a lot of people-really gradual over time that people don't notice their hearing is going. Get your hearing tested. I think that’s one also, I'm not an expert in hearing contribution like my colleague is, but wear hearing protection, protect what we have. Your hearing cells are not going to grow back. Protect them. So, that’s what I would recommend.

Adam: Why can't we get some of those frog cells in there? We can grow them back

Stacey: One day.

Adam: One day.

Stacey: I don’t know, I thought I would be dead before that happens.

Adam: Maybe not. Maybe not.

Stacey: We'll see

How important are support groups - especially for younger people with hearing loss?

Adam: So you've talked about your journey and having parents who are really great advocates and then having early school teachers be great and then having these mentors in college. Tell us a little bit about the power of support and where people can find that support.

Stacey: That is one of the most powerful things. I'm really glad you asked that because I think so many people don't think about it. So one the coolest things, my parents did was that they co-founded a support group, when I was a kid for families of other kids who were in the same kind of situation I was and also used spoken language. But they built that community. I'm friends with some of them now. Some of them are much younger and some are closer to my age. But the one thing I definitely want to call out is the opportunity I had when I was a teenager. My mom basically made me go to. It's called Leadership Opportunities for Teens. And it was before-or LOFT. And it actually a group for teenagers with hearing loss and they do this every summer, and all of the camp counselors have hearing loss too.

Adam: Oh wow.

Stacey: So, I was in the first group in 1996 and there were 20 of us in that group. And you know what, I mean, I've always been comfortable with my hearing loss, but it’s amazing to have other teenagers the same age as me who are going through the same thing that I was. No one in high school would think about college, or accommodation, or later on, work and that kind of thing. And it is such an amazing program because I learned a lot about advocacy and how to advocate for myself because the one thing they taught and the one thing they teach in the program, is just self-advocacy for teenagers. But out of that I also have lifelong friends. And then I've been fortunate enough since 2013 to be a camp counselor several times. And being on the other side of it, you can see that transformation that the teenagers go through. Some of them still text me, or Facebook messenger, Instagram or whatever, and it is such an empowering program. And I think it's really important because if you are the only kid in your school with hearing loss and you feel like nobody knows what I'm feeling. So I'm making sure that families have that connecting whether through LOFT, or maybe a local organization or something or not from the organization that can connect you those people. And that's something I try to do here too.

What advice would you give to young people with hearing loss who are considering careers in audiology or other STEM fields?

Adam: That's so huge too, I think for anything that you might be going through that as supportive as your husband or your parents might be. If you have an ailment or a situation or something you've been through that's somewhat unique, knowing you're not alone, just in and of itself is such a massively empowering feeling to go “I'm not on an island at any point,” so I appreciate what you said there. You did also mention other audiologists who have some hearing loss and I was curious what you might recommend to younger people who have hearing loss themselves who would like to be on a similar journey to you. They're inspired by the help they've got, so how can they carry that forward?

Stacey: Don’t let anyone tell you can’t be an audiologist. That’s number one. There’s unfortunately, still people out there who think you can't be an audiologist because you have hearing loss. Second, make sure you go through a program that will support you and help you, in a program that is willing to work with you and the accommodation you might need in clinic, or maybe it’s the microphone, or the class like maybe a note taker or whatever kind of accommodations are reasonable for you. Make sure you connect with other audiologists with hearing loss, there’s a lot of us out there.

Adam: They are out there. Yeah.

Stacey: We'll help you.

Adam: Yeah, I think that that's awesome. I know that I didn't have any accessibility things to overcome to be in my career, but whenever I'm talking to younger people who want to do it and I can put them in the right direction, which is usually don't get into creative media, go to business school. I'm kidding. I'm kidding. I appreciate you. I think it's really interesting when we met this fall and we got a chance to talk over in the Carl Center for the Carl Center video. I thought you were pretty inspirational then, but after an hour long conversation versus our eight minute one. Awesome. I'm so glad you came in.

Stacey: Thank you. Good to meet you again. Thank you so much. This was a lot of fun.

Adam: Yeah, thank you. Thanks for stopping by The Search Bar. Make sure you like and subscribe so that you never have to search for another episode.