Kimberly talks with Dr. Kristel Scoresby, assistant professor of social work at the University of Kentucky. Dr. Scoresby is deaf, and they discuss cochlear implants, accommodations, and universal design.

Visit Dr. Scoresby‘s ongoing website project at Hearinglossimpact.com

Thanks to Chris Ankin for use of his song, “Change.”

The book "A Celebration of Family: Stories of Parents with Disabilities." is available from Amazon here.

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Demand and Disrupt is sponsored by the Advocado Press and the Center For Accessible Living.

You can find the transcript in the show notes below when they become available.

Transcript

AI Voice You're listening to Demand and Disrupt, the podcast for information about accessibility, advocacy, and all things disability. Kimberly Parsley Welcome to Demand and Disrupt, a disability podcast. I'm your host, Kimberly Parsley. Sam Moore And I'm your co-host, Sam Moore. Kimberly, it is hard to believe it is already April. Kimberly Parsley It is, it is hard to believe. Sam  Moore And it's spring and all the pollen is blowing around. Kimberly Parsley It's, yes, it's dusty and yellow out there, I hear. Sam Moore And as we currently speak, the floodgates continue to be open, but, uh, you know, we're, we're staying high and dry so far. Me in Henderson, Kimberly in Bowling Green. So that's right. That's what counts for us at least. Kimberly Parsley We are, we, we are doing well right now. Sam Moore So that is, that is great. Um, we hope everybody else is staying above water too. Kimberly Parsley Indeed we do. So I have a wonderful guest today. Her name is Dr. Kristle  Scoresby. She is an assistant professor in the college of social work at the university of Kentucky, and she is also deaf and she talks about cochlear implants and she talks about her research and applying what she's learned in her research to her social work. So a wonderful, wonderful conversation I have with her and you know, something she said got me thinking,  as you do. And  this, this episode I entitled “Who gets to decide what's reasonable?” And you know, we talk about that phrase reasonable accommodations and so Sam, I'm wondering, has anybody ever in, in your time, either as a student or an adult working or, or anything anywhere questioned the reasonableness, if that's a word Sam Moore if it's not a word, we can make it, we just made it a word of a request for accommodations that you made. I mean, heck with the Webster's dictionary. We're going to have the Moore-Parsley dictionary here. Keep your ears peeled eyes open for that folks, but anyhow, yes, everybody's interpretation of reasonable seems to be different and I'll tell you my, my college experience at Western Kentucky University was overall great. I'd say 98% of my professors were at least decent, but there's, there's always one or two bad apples. My worst apple was my freshman year. It was a broadcasting class. It was not the intro, but the next one up, which was 201. I think they kind of considered that a weed-out class at the time. Cause you know, if you, if you got through that, you most likely stayed in the major and then did well. But  if you struggled with that class, you know, chances are you were, you didn't try to repeat it too many times and you just switched your major. But anyway, I had a, we had to watch a video of choice and we were given a list of several to choose from, and we had to write a report about the video. So the first one we tried to watch, um, it was, uh, it was too visual in nature, and my program assistant, Trish, she was trying to watch it with me and describe things for me, but she was like, finally, yeah, she goes, you know, this particular video saying, it's, uh, it's going to be hard for you to get much out of without being able to see it. And I said, well, I kind of think you're right after about 30 minutes of this thing. So my professor made another suggestion of a video that was more doable. And it was, but it was late in the game when we got access to it. So, I watched the film, um, you know, I asked for a little extra time on the report since we were late in getting our hands on it and, um, she, uh, she said, well, if I don't have it from you, uh, by the end of the day, I'm going to give you a zero on the paper because you've known about it forever. So, uh, I went home, well, my dorm and worked my tail off on this paper. I had it done about three the next morning. So the next day I slipped it under her office door while she wasn't there. And, uh, I think I knew she wasn't going to be there that day. So I thought, well, you know, for all she knows, it could have been there the very night after we talked, so we'll be okay. And so I, uh, next class period, I went up there to her. I said, uh, I left my paper underneath your office door, did you get it? She goes, yeah, I got it, and, um, I think I'm going to award you half credit for tardy completion. That's what she did. And, uh, shortly there afterwards, I was a little concerned about my grade in the class as a whole, so I went into her office to express my concern, and, and she goes, well, you know, Sam, there, uh, there are colleges out there for the blind and I didn't say it, but in my mind, I'm thinking, yes, ma'am, I thought this was one of them. Kimberly Parsley Wow! So, uh, you know, that's just, that's just a jerk move right there. Sam Moore It was, uh, but it made me appreciate the good professors I had for sure. Kimberly Parsley And, um, and you remember, you remember her name. I do remember her name and like, like we were talking about before we went on the air, you know, it's funny how the, the ones that give you problems, you always remember their names, Kimberly Parsley The rotten apples. Sam Moore the rotten apples you remember, right? Kimberly Parsley Would you like to out her right now? Because I'm for that. Sam Moore Well, I guess I'll be nice and. . . Kimberly Parsley You're nicer than me. Sam Moore I'm just, you know, somebody who knows somebody is listening. Kimberly Parsley I was willing to fight for justice for you, Sam, but. . . Sam Moore I appreciate that. But now she's, uh, she's not even in the broadcasting department anymore at Western. She, uh, has moved on to a different school, so I guess I'd have a little more wiggle room, but you know, I'll just, uh, I'll just say that, uh, I got through it and, uh, you know, as they say, what doesn't kill you just makes you stronger. Kimberly Parsley So my time at Western was overwhelmingly positive. I did have one, a sociology stats professor who was kind of a jerk. Sam Moore There's always at least one. Kimberly Parsley There's always at least one. Yeah. He was unwilling to make accommodations until forced to do so because he thought any accommodation was unreasonable just because it appeared to, I don't know. Sam Moore I guess he thought it created an unfair advantage. Kimberly Parsley Well, yes, yes, that's it. He thought it created an unfair advantage, which is, and that's, that's the crux of that word reasonable because it's baked in it's like, okay, all you disabled people, you know, don't you be asking too much because already we think having to change how we do things is unreasonable, you know? So it kind of feels like there ought to be air quotes around that word anyway. So, um, I hate it. Sam Moore Yeah, we, we could do a whole, we could do a whole podcast on the interpretation of reasonable. Kimberly Parsley Yeah. Well, uh, Dr. Scoresby talks about it. She's, she's so smart. She talks about it in this interview that I did with her. So who gets to decide what's reasonable. That is the title of this episode because of something Dr. Scoresby said, and she's so smart and intelligent. Sam Moore Now since she's deaf, when you, when you asked her a question, did she like type her response and is that how it works? Kimberly Parsley No, she actually has cochlear implants now. So she has a cochlear implant and she uses a hearing aid, uh, on, on one ear. So she can, she can hear now, but without her augmentations and things, she is,  completely deaf. Sam Moore Very interesting. Kimberly Parsley But I'm glad you asked that because I am willing to do interviews however I have to do them. Sam Moore You know, whatever we got to do to get information out of people. Kimberly Parsley Yes. I mean, she, could talk and things and that, but if any one who is deaf and well, I did the nonverbal princess. Sam Moore Yeah, The actor actress. Kimberly Parsley Yeah. Sam Moore Yes. So we, we will accommodate anyone. Kimberly Parsley No accommodation is unreasonable for us. Sam Moore We'll do what we can to, to get a good story out of anybody that has a good story and who's a good fit for the program. Kimberly Parsley That we will, Sam, that we will. And so now we will hear my interview with Dr. Kristle Scoresby. Kimberly Parsley Welcome Dr. Kristle Scoresby to demand and disrupt. How are you? Dr. Scoresby Thank you. I'm good. How are you doing? Kimberly Parsley I am doing very well. Thank you for taking the time out of your busy schedule to talk to us. Dr. Scoresby You're very welcome. I really appreciate the invitation to be here. Kimberly Parsley No problem. So I did a little introduction of you at the beginning, at the beginning of the episode, we're mainly going to talk about issues relating to deafness and hard of hearing, so can you just start by telling me a little about yourself? Doctor Scoresby Yeah, sure. So I am new to the state of Kentucky. I am an assistant professor at the university of Kentucky in the college of social work and have been a social worker for many, many years, but after being in the field for a long time, and was coming across increasingly complex cases, you know, I would try to turn to the research to, to know how to help some of my clients, and I was frustrated with my inability to access research or even know how to apply it, and so I made the decision to go back to school after being in the field for 17 years to get my PhD, to learn how to do research. And so I graduated from the university of Tennessee in Knoxville with my PhD in 2023 and then came to Tennessee. So I've been in the college of social work here where I am doing research and teaching in the master of the social work program and just having a great time. Kimberly Parsley Wonderful. Well, welcome to Kentucky. We are happy to have you. Doctor Scoresby Thank you. Kimberly Parsley And as with blindness, you know, I understand that hearing loss exists kind of on a spectrum and is rarely ever, you know, straightforward, so tell me about your personal journey with hearing loss. Doctor Scoresby Yes, absolutely. And you're right. It's not everyone's story is different and how not only about the actual disease itself, but about how we feel about it and how we identify and how we accommodate. Like all of our stories are different. So for me, I had genetic sensory neural hearing loss, so I have nerve deafness, and so my hearing loss started at age four before school. Well, hospitals back in that time did not do newborn screenings and rarely did schools do screenings, but my mother, who also has a hearing loss, wanted me to be screened because she noticed I was struggling in responding and would say “what” a lot. And, and so she got me tested by the school district, so that's our earliest test that diagnosed me with hearing loss. And then it's progressive, so I lost as I aged, I lost a little bit of time, a little bit at a time, a little bit at a time until hormones from pregnancy, my first pregnancy took my hearing loss from at the time it was severe and it just dropped like all the rest. I lost all the rest overnight. Kimberly Parsley Really? Dr. Scoresby Yes. So, um, I became profoundly deaf. Kimberly Parsley Was that something that you expected from pregnancy or was that kind of a shock? Doctor Scoresby Yeah, that was a shock. And, that was not necessarily the trajectory of other family members who had experienced hearing loss and pregnancy. So I was not fully expecting that. It was, it was actually really scary because, you know, I was trying to seek medical care for, for pregnancy and, and I couldn't even understand what the doctors were telling me. Uh, so it was just a really stressful time and we didn't have, you know, phone apps at the time that could live caption conversations like we do now, and there was, there were some really stressful things in navigating. And I was still employed. I was still working and still trying to be a social worker. Uh, so I'm a clinical social worker and would try to, you know, navigate conversations with clients and so having that drop in hearing was just a really, really significant challenge for me. But three years after that, and after many, many, many, many insurance battles, uh, I was able to get a cochlear implant. And so I am considered bimodal now. So I have a cochlear implant in my right ear. I still wear a hearing aid in my left ear. I have very little hearing in my left ear, but it helps balance out some of the high tech sounds, of the cochlear implant, because it can be, you know, high frequency robotics that's hearing through a computer. And so it's just for me, I really love having that, that little bit of, um, balance from, from amplifying the teeny little bit of hearing that I have left in my left ear. So between the two, I do really well in quiet environments. So in optimal listening environments where there's no background noise, you know, I can see a person's face. I can read their lips. I can read all of the visuals and all of the cues. I do really, really well in those situations. But the second you start to implement background noise or more than one person talking or the speaker is farther away from me or has a strong accent or their face is covered, then my ability to hear drops substantially. Kimberly Parsley Really? Now, what year did you get the cochlear implant in? Doctor Scoresby 2012. Kimberly Parsley You're the first person I've ever talked to who, I think, who had a cochlear implant, so do you want to tell us about that process? That's a relatively new sort of medical advancement, correct? Doctor Scoresby Well, it's actually been around for quite a while, but it's now considered standard of care. Kimberly Parsley Oh, okay. Doctor Scoresby Yeah. The technology has advanced quite significantly, but there's also quite a bit of, I guess, maybe tension, for lack of a better word, between who should be implanted and who shouldn't, and so, you know, when a child is born deaf, there are many advocates who say, let's have that child learn sign language from the get-go, and then there are advocates who say, let's implant that child so that they have access to sound, and then you have this third group that's like, let's just get this child all of the languages possible. Let's do both. So there's some difficult things also when it comes to cochlear implants. But for me, it was definitely the right choice for me because I had been working and participating so much in the hearing world and was used to accommodating my hearing loss, but I was oral, so I used speech, so I never learned sign language, so having a cochlear implant for me was, has been a miracle every single day. Kimberly Parsley It's a miracle. Doctor Scoresby The fact that I can hear you and hear these questions, for me, it's a miracle. So I, I'm very grateful for my implant. I will tell you is not a cure, an instant cure. I, after being implanted, spent weeks and weeks and weeks and months on auditory rehabilitation to retrain my brain to hear. And so, you know, when that, when the implant was first turned on, you remember fax machines, right? Kimberly Parsley Oh yes. Doctor Scoresby Oh, for me, when people spoke, I didn't hear human speech, I heard beep, beep, beep, beep, beep, beep, beep, beep and so I had to go through rehabilitation to turn those beeps into human speech. It was a lot of work for me. Um, I was so determined to be successful. I put in a great amount of effort and it took after about six weeks of all my rehabilitation, environmental sounds started turning, like I was typing at a keyboard and instead of like beep, beep, beep, it became click, click, click, like a keyboard sounds and then eventually human speech, which was, that was, that was the last thing to turn. It turned for me, so now I can understand it as human speech, but it was quite the process. Kimberly Parsley Wow. And where did you do this, the rehabilitation work? Where was that done? Doctor Scoresby So I have my surgery done in Utah and rehabilitation work I did there, and, um, a lot of it was listened through these listening tasks at home. Kimberly Parsley Now, when you're going through the rehabilitation process and so you have the implants, this may be a stupid question, but do you ever get overwhelmed? And if you do, can you turn off the implant? Doctor Scoresby Yeah, that's a good question. And the answer, the short answer is yes. Kimberly Parsley Oh, good. Oh, goodness. Doctor Scoresby Yeah. Kimberly Parsley Because that just seems like that seems so torturous. If you can't, you know, that would be horrible. Doctor Scoresby Yeah. As a matter of fact, my kids are so funny because they're like, when I say, when I tell them, I'm like, you guys are being too loud, quiet down, And they say, just take off your ears, because I did, I take them off at night. I also take my ears off when I really need to focus. So part of my job is writing you know, publications and manuscripts and I have to be really, really focused, and so I take my ears off when I need to hyper focus so that I literally have no sound coming to me at all. Kimberly Parsley Okay. Doctor Scoresby Because there's just so much, there's so much listening fatigue that comes from having to hear and having to listen, so shutting off that ability allows me to engage my brain fully with what's in front of me instead of devoting so much cognitive energy to listening. Kimberly Parsley Yeah. So when you say, say you take your ears off, you take the left hearing aid, off right? Doctor Scoresby I take my left hearing aid off. I might take the external processor off of my cochlear implant. Kimberly Parsley Oh, okay. Okay. Doctor Scoresby There's two pieces to cochlear implants. There's an internal device, which is implanted inside your cochlea, and then there's an external device that you remove on and off and it's connected through a magnet to the internal piece. And when those two devices connect, that's when this, the microphone works and the sound comes up through the coil and, and bypasses into the internal device through radio signal and then sends the information and the sound down through the electrode array into the cochlea and allows you to hear. So, so that is connected through this magnet of my external processor. So I can take off the external processor. Kimberly Parsley Oh, okay. Oh good. My, my world is, is very different. I'm always relying on sound, but I, I totally know what you're saying about when you're focused, because for me, I hear things all over the house. Like I can be in one room, but I'm basically  in a way present in another room. A friend of mine calls it the brain tentacles. You know, it's like just, just having a brain sort of everywhere. And like, I can tell you where everyone in my house is or what  room they're in and basically what they're doing, because if someone goes out of a room into another room, I know that, and it's not just like, Oh, I heard that it's like, an internal shift in my brain. It's like, I'm mapping everyone. Doctor Scoresby Energy that you're using. Kimberly Parsley Right? Exactly. Yes. Doctor Scoresby Yes. No, because you have to rely on all of those visuals when you, I'm sorry, auditory cues, you're not able to see anything. Kimberly Parsley Yeah. And, and I think it comes from also, I think I've said this before, but it comes from parenthood where you're always on, you know, you're always having to pay attention, so I think it, it's an effort to be able to turn that off. Like now they make, you know, headphones with noise cancellation and thank God for them. Doctor Scoresby Yeah. Interesting. All that is interesting. Kimberly Parsley I don't think I've ever talked to anyone about their cochlear implants before, so thank you for that. Doctor Scoresby Yeah, of course. Kimberly Parsley How are some ways that you navigate through the world? I know you talked about the cochlear implant, so how are some other ways that you navigate through the world with hearing loss? Like, I, so do you want to tell people how we're, how we're having this discussion now over zoom? Dr. Scoresby Yeah, sure. I, yeah, I, I use, I employ so many accommodations. So for me, I feel like I'm always on as far as if I'm listening to you, I am going to do everything in my power to hear you because the person I'm talking to matters to me and I want to hear them. So I use captions all the time. I'm using captions in this zoom right now to, to be my backup in case there's something I miss from you. If I don't hear it auditorially, then I can listen or I can read the zoom. So I put captions on everything. It's on TV. If I use it, even if I'm, you know, watching some type of video, I put it on. As a matter of fact, I get really frustrated with how far technology has advanced and there's captions that are free everywhere when, when something doesn't have captions, I, I'm pretty frustrated. Kimberly Parsley Um, yes. Yeah. Doctor Scoresby And I do, I have an app on my phone that will caption things if needed. So I always have backup to my backup. Kimberly Parsley Oh, what's the name of the app? What's the name of the app on the phone? That'd be great. Doctor Scoresby Oh, there's, there's several.  yeah, I use Otter AI, um, like transcribe app. My mom also has deafness and she has an Android. I use an iPhone. So Otter works best for me, but she uses an app that it just comes along with the Android, and all she has to do is just touch a button on her home screen and it starts captioning any live conversation around her. So I do, I use that. I use assistive listening devices. So there are, you know, there's a device called the contact. There's several different types of listening devices, but I will use that to amplify the hearing that I have. Bluetooth is set up through my cochlear implant and my hearing aid and through my phone. So I will use Bluetooth, which automatically streams directly to my hearing devices. I ask people to move their hands away from their face so that I can see their lips and I will read lips and, um, I will intentionally go into a room early so that I can see what the listening setup is, and I will try to sit in the best seat possible. I try to guess where the speaker's going to be standing or sitting, or if they're going to be someone who's moving around a lot to try to like place myself in the best position to be able to see them and have access to them. If they are going to be moving around a lot and they're going to have a difficult voice for me to hear, then I will ask them to wear a mini mic, which is another form of assistant listening device that works with my cochlear implant. So I could keep going, but there's lots of different things that, that I utilize to continue to navigate the hearing world. Kimberly Parsley Great. Lots of, uh, I did not realize there were so many tools in that particular toolbox. So that is great to know. Doctor Scoresby Yeah, there are. Kimberly Parsley Yeah. You mentioned accommodations. I have, I listen to a lot of podcasts that are from Great Britain and I don't know why they just sort of show up in my feed and whereas here in the United States, we call it reasonable accommodations, they call it reasonable adjustments. I like that so much better. Do you, what do you feel about that? Doctor Scoresby Hmm. Reasonable adjustments. You know, I do have to say the first, I do feel a little bit triggered by the word reasonable. Kimberly Parsley Yes, me too. Me too. Possibly that's the word word we should be talking about. I feel like, I feel like the, I feel like the unspoken is what we know you would try to get away with more if you could. Doctor Scoresby Oh my gosh. Kimberly Parsley You know, do you, is that how you feel like there's a mistrust in it? Inherent in that word? Yeah. Doctor Scoresby Yeah. I can't even believe that it's simple things in which I'm like, okay, I need this to hear and somebody, somebody can say to me, an employer, for example, an instructor can say to me, oh, that's not reasonable. Well, how do you know? What is reasonable for me and what's not, you know? Um, I will have to say, I do appreciate, I do appreciate when folks are open-minded and they're willing to listen to what I think is a reasonable accommodation for myself, because I'm not trying to take advantage of any system. I just want to hear you. Kimberly Parsley Right, right. Yes. Yes. You're right. That's the word reasonable that we really should be pushing back against that. I think we're just so grateful to have anything that we're like, well, we're not going to quibble, but yeah. Doctor Scoresby And we are grateful, of course we're grateful, but at the same time, you know, I just, I think about Judy human. Kimberly Parsley Ah, yes. Doctor Scoresby Uh-huh. Like, I'm tired of having to be happy to have an accessible bathroom. Kimberly Parsley Right. Doctor Scoresby And, and just, yes, of course I'm going to be grateful for anyone who's trying to make an effort. But if I'm working so hard to hear you, I do need you to make a little effort. And if you refuse, or if you take that opportunity and make me feel like I'm just trying to take advantage of a system, then that, that just becomes really frustrating for me. So the whole, the whole reasonable, I don't see why others are able to say what is reasonable and what it's not. If they've never experienced this disability. Kimberly Parsley I love it. I love that you said that. Thank you so much. Doctor Scoresby Yeah. And let me give you, let me give you another, a quick example of when it works. So my, so my Dean is very willing to work with accommodations. And so I told him once I said, zoom's not working very well for our faculty meetings and I need cart and cart is a live transcription. So a person is there listening to the audio and transcribing it so that the words are in front of you. So it's not AI generated. It is human generated. I said, I, I need, we need cart and there was no question for him. He said, okay, tell me what cart is and I will get it. You know, he didn't know what cart was. So he didn't push back and say, um, I, that's not reasonable. We already provide you with zoom. He didn't do that. You know, he just said, okay, I might not know very much about this, but yes, let's do it if this is what you need. So he trusted me to know what I needed and supported me in that. That's what, that's where I think we should go in terms of disability is we're the ones with a lived experience. Trust us. If we say we need this work with us. Kimberly Parsley Yeah, I think so many times we feel like, I think, I know with me starting a new job or just whatever, I felt like I just needed to shrink myself and try to get by with what I had. You know, I think as you get older, you're a little more willing to ask for what you need. I would, I would not go back to being college age Kimberly because I was, I was scared, I was unsure, you know, so those, uh, those, those times are hard. Doctor Scoresby Yeah. And it's, it's really difficult to advocate for yourself. Kimberly Parsley It is, it is. So there's some terms interpreting and then transcribing and then like translating. So can you tell me what, what terms we're talking about when we say those things? Doctor Scoresby Yeah, sure. So, so interpreting usually refers to sign language. So, um, American sign language interpreters are needed when a deaf person who relies on American sign language is talking with a hearing person who does not know sign, so an interpreter is needed to translate, uh, what the hearing person is saying, um, into sign language and then what the deaf person is signing into oral speech for the hearing person. So that's captioning and transcriptions. So they, they're similar in that they're taking an audio and putting words to the audio, but a captioning and subtitles is usually associated with the words going along with some type of video. So there's some type of visual. So for example, in this zoom screen, it's captions because I can see it right now during this interaction that we're having. Uh, a transcription is not necessarily associated with a video or with the audio in real time. It's usually associated with after the event has occurred, after the communication has occurred, then it's a word-by-word transcription of what has happened. So for example, in a court proceeding, nobody in that courtroom is reading the transcription live, but yet the judge has access to a word-by-word transcription after the event has happened. Kimberly Okay. Gotcha. And then a cart is where someone is live sort of. Doctor Scoresby Yes, it's a little, it's real time captioning, but by a human, not by AI. Correct. Kimberly Parsley Awesome. Okay. Let's see. And now I know so much more now. Doctor Scoresby I know all the methodology matters. Kimberly Parsley It does so much, so much. And fortunately, you know, there's so much more of it now. So, so much more of it. So that's great. And as a licensed clinical social worker, which you are, what accommodations or adjustments are important for you? Doctor Scoresby Um, yes. So, um, in my role as a social worker, I, I need to be able to access speech. I need to be able to access what people are saying. Um, I need to be able to, to, I can't perform my role to be a helper if I don't know what somebody is saying. Right. So I need a quiet environment. I need to be able to live caption something without, and you know, I have to be careful about what I caption because we have laws that, that protect, um, recordings and, you know, you don't want to record somebody's private health information, so I have to be very careful about what app I'm using and if it's recording and storing or recording and deleting that, where is that going? Um, so I have to navigate that if I'm working with a client, for example, if I'm working in a community with a community, I have to have captions. I have to be able to have microphones in place with that community where people, you know, people are uncomfortable standing up and talking or standing up in front of a room, but, but I need that. I need, I need in, in our, my faculty meeting, I need department chairs when they're sharing updates, I need them to stand up and go to the front of the room versus stay sitting at their table where I might not be able to see them from where they're sitting. So even though people are, might be uncomfortable standing up and talking in like a meeting or community setting, I need people to be able to stand up so I can clearly access their face and all of those, those visual cues that are so helpful in, in navigating a listening situation. There are times that I need real time captioning that, you know, but there are times where I'm just like, okay, I can hear you. I'm good listening situations, different. Kimberly Parsley Do you ever get pushed back when you, because I'm sure people forget and you have to say, could you go to the front of the room? Do you ever get pushed back from that? Doctor Scoresby I have to remind people every single day, every single, there's never a day goes by where I'm not reminding somebody of some type type of accessibility issue I'm having. So, yeah. And I think people mean well, they do. They just forget when you don't experience it yourself, you're, you don't think about it, but there's also a lot of people who have hearing loss. Many, many people, 20%, 20% most people with hearing loss don't advocate for themselves and don't even make a request. They stay silent. So I feel like I'm not just advocating for me. I feel like I'm also advocating for all of the people in the room who aren't saying anything, but I do get tired of being the only person who says anything and asks for accessibility. Kimberly Parsley Yeah, I'm with you. I feel that thing. You may be the only one in the room you're in, but there's a lot of us all over the place having to do the same thing. And what's the advocacy fatigue? That's a new phrase I've heard that it is real. Doctor Scoresby Yes, you're right. Kimberly Parsley And so in your research, you researched the mental health challenges faced by the people who are deaf of heart of hearing. Tell me about that research. Doctor Scoresby Yes, I do. Um, and I had not intended to get into this type of research when I went back to school to get my, my PhD, but when the pandemic hit, when I was getting my PhD and I saw after, you know, having hearing loss my whole life, I'm very involved in the hearing loss community and the deaf community. And, um, I saw this stress and, and anxiety and depression rise so significantly and suicide ideation. I just saw these after working in mental health, my whole career, right? I can see it. I can spot it easily. And so I could just see all of these, the, this mental health issues rising. And I was looking around and I'm like, who's studying the people with hearing loss, like who's, who's taking note of this who, and I, you know, there wasn't a lot. And so, um, I created a side project to look at people with hearing loss during the pandemic and what was going on with their mental health and that side project became my dissertation and that dissertation became my entire research agenda almost because, um, there's such a dearth and so many gaps in our research and our information about, about people with hearing loss and their mental health needs and the relationships that occurred between mental health and hearing loss. So when a person is not able to access vital and critical conversations, you know, they're, they're likely to become anxious and when you have a chronic condition like hearing loss, it means you are having these moments of anxiety in multiple conversations, maybe multiple times a day, maybe multiple, multiple times a week. Uh, and so, so generalized anxiety, anxiety disorder is really high among those people who, uh, who have hearing loss, but that's not the only mental health condition that's high. Depression is high, uh, suicide ideation is higher among, uh, those with hearing loss or deafness than those who have hearing, um, substance use like, uh, those who drink, they don't necessarily drink more often, but when they do drink, they drink heavier amounts, uh, of alcohol. And so that could be alcohol issues and, you know, there's all kinds of different mental health conditions that are associated with hearing loss. So my research, my research is designed to look at some of these mental health challenges, help mitigate them, but especially in integrating social work and audiology spaces. So bringing mental health into audiology spaces. So audiologists are fantastic at tinkering with hearing devices and helping us to navigate our hearing loss and, and, you know, trying to help us navigate different kinds of communication challenges, but, um, they don't have the time or the training or the resources to also treat mental health conditions that go along with hearing loss, but people with hearing loss are often turned away from mental health providers if they're seeking mental health care. So if audiologists can't take care of our mental health care needs, and if the mental health world is not wanting to take care of our mental health needs, who's taking care of the mental health needs of people with hearing loss? That's what my research is designed to do is integrate these worlds, create solutions so that people with hearing loss, um, or deafness, regardless of their communication preferences, that they're able to one, learn about how their hearing loss interacts with mental health and then to access care so that they can receive treatment in their patient preference to be able to help treat their, their mental health issues. So that's my research focuses on. Kimberly Parsley So tell me about the, the wording, the deaf and hard of hearing and why that wording is preferable to, to other things. Doctor Scoresby Yeah, great question. And so, you know, I, myself, what matters here, like underlying message among language here is what does the person prefer, which is challenging when you're outside this world and you're not familiar with this world. Because you're like, wait, how many different terms are they? How many different terms do I need to learn? Well, you don't need to learn a bunch. You just ask the person, how do you identify, right? I personally identify lowercase D deaf. I have zero hearing without my devices with my devices I can hear. So I'm in this in-between world. So I don't use sign language and I'm not often a part of the cultural traditions of the deaf community, deaf with an uppercase D deaf. And so uppercase D refers often to being part of deaf culture and deaf community and using American sign language and the United States to communicate. So, so many people who are in that community identify as deaf capital D, regardless of where their hearing loss is on an audiogram. If they participate in the deaf community, they identify as uppercase D deaf. But more often that's profound deafness. People who, who cannot hear, who at all, or very, very little. Lowercase D deaf often refers to people who have profound hearing loss, but who still communicate through accommodations and hearing devices and use oral speech, et cetera. Hearing impaired is, is another term in which regardless of where you are at in the spectrum, you could have mild hearing or profound, uh, hearing impaired has been a word, a phrase that has been used previously. But many people with hearing loss and deafness do not like it because they're saying I'm not impaired. And so that phrase has now outdated and people continue to use hard of hearing, which I exchange often with hearing loss, so hard of hearing. And that could be anywhere. I have a little bit of a hearing loss. I have a middle range hearing loss. I have a severe hearing loss, but I still very much participate in the hearing world. I use oral speech, I use hearing devices or other types of accommodations to try to hear you. So I'm hard of hearing. So people will use these, these terms, hard of hearing, deaf, deaf disabled. So there's, there's other terms in addition to these ones, but the, when we're talking about in general for the whole community, we usually say the deaf and hard of hearing, because that's those two phrases tend to cover almost everybody within the community. Kimberly Parsley Okay. I think that's not, no, no, it's not. It actually clarifies a lot. I think, I think defining our terms is important, but I love that you started with just ask a person how they want to be referred to, you know, that is, that is the best way I watched a presentation that you gave in, I believe it was 2022 about the importance of universal design, and you said it had a long way to go in terms of accessibility for the deaf and hard of hearing. Can you speak to improvements that have been made, I guess, particularly in the field of, I guess, a social work or higher education? Doctor Scoresby Yeah, sure. So universal design for learning is, is based on the concept, this design of universal design, as far as for buildings, that's where it began. This man named, named Ron Mays was a wheelchair user and an architect, and they wanted to complete his degree. Um, but that, you know, the school of architect was on the second floor and there were no elevators in his building. And so other students had to literally carry him up and down the stairs so that he can even attend classes. And so he created the, this concept of universal design in which, you know, why don't we intentionally design buildings with accessibility in mind? And that has carried over several iterations, but, but universal design for learning now in an education setting is why don't we design our courses and our classes and our programs? And I teach my students in their agencies, you know, why don't we intentionally design all of these things with accessibility in mind? So instead of adding on an accommodation because we have to, because it's the law, because we're required to, and as we said earlier, someone else gets to determine what's reasonable or not. How about we bypass that, right? And we just say, Hey, I want all types of bodies in my classroom. I want all types of bodies in my program. So how about I intentionally design this syllabi so that the thought is easy to read, that those who are susceptible to migraines won't be triggered by my, you know, by my syllabi because I'm using appropriate fonts. For example, I am considering those who have color blindness. And so I'm not using certain colors in my syllabi or in my presentation or in my classroom, but those, even though there's various abilities with color blindness, that I'm considering it, right? I'm trying to consider what different abilities are. And I'm trying to design my course so that regardless of what your ability or disability is, you still feel welcome in my course and my course content is accessible to you. So when I said we have a long ways to go for the deaf and hard of hearing people, I walk into an education space. I still have to ask someone to turn the captioning on. Why? It's free. It's accessible. All you do is push a button. Why do I still have to ask for that? Why are we not just captioning everything everywhere we go all the time? Because it's not just people who are deaf and hard of hearing benefit. A lot of people benefit from captioning, but even if it only benefited those who are deaf and hard of hearing, 20%, right? So, so universal design says we start with caption. Nobody has to ask us to turn them on. We're going to start with captions. So in the, in the field of social work, I, you know, I go to professional conferences. I go to academic conferences. I have to ask, I have to ask every single presentation. I attend every single thing I do. I have to ask, can you turn on the captions? Can you turn on the captions? Can you turn on the captions? And then I have to rely on their comfort level with turning on the captions, their familiarity. And half the time they say, I don't know how to do it. And I get up and I show them how to do it. Right. Um, but higher ed still has not learned to just turn on the captions. And that's like bare minimum because that's free. No one has to pay anything for that, let alone being able to build in, you know, a higher level of accommodations. You know, the more, for people with hearing loss, we rely so much on visual. Now this wouldn't help somebody who was blind, but for people with hearing loss who need visuals, being able to put more pictures with text inside your PowerPoint slides, instead of just having all content and then you're just speed reading through all the content, like let's use our visuals better. So that would be also a higher universal design principles. So that's what I mean by we still have a long ways to go. You know, I want my students to feel like my classroom space is not only welcoming, but that, you know, they, they don't have to work so hard on accessibility, but they can actually master the content of the course because they're not having to work so hard on just, can they access the materials, right? Can they understand the material? So I built in a lot of different components for my own courses, but I have to tell you about a time that I failed. So I tell all my students, I stop at the syllabus policy and I explain accommodations, this disability office has explained students to utilize our resources and to get letters if they need letters, but here's also all the things I do to help the course be accessible so that you get to choose whether you use your accommodation letter or not, but that hopefully the course itself still has lots of accommodations built into it naturally. Where if you don't want to ask to use your letter, you don't have to, but one time, and so I talked to my students about this on the, on a regular basis, but one time a student approached me and she said, your class is not accessible to me. I know your, your eyebrows just went up and, and I was like, what? I worked so hard for my courses to be accessible, right? And I'm like, really? And she's like, yeah, it's not accessible. This, this doesn't work for me. And I was just flabbergasted and I'm like, okay, I thank you for telling me. I want to understand how I can be more accessible. And she proceeded to tell me about a disability experience that she had that not only was I not familiar with, but I had never seen in any of my reading or work in universal design or accommodating in classrooms, I hadn't seen it and I, you know, didn't know about it. And so she taught me about a component of accessibility that was needed. And I was able to implement that. And, but what was beautiful about that whole experience is that she said, your class is not accessible to me, but you are. Kimberly Parsley And I, oh, that's nice. Doctor Scoresby Yeah. I knew if I asked you, you would be able to build this in. And she's like, I've never asked a professor. I don't feel safe asking people for this, but I feel safe with you. And so I'm like, okay, universal design. It's not about, I get it right all the time, or I can understand and predict everyone's ability, but it means I'm accessible with my students. We can build this accessible course. It was like a failure, but also a really great learning opportunity. Kimberly Parsley And you mentioned in that YouTube video that I watched of yours, that people with hearing loss are excellent fakers. And so I'm wondering, I'm wondering, can you tell, can you say more about that? And why might someone feel the need to, I guess, keep their hearing loss hidden? Doctor Scoresby Yes, yes. So as I mentioned earlier, it takes a great deal of cognitive energy to listen when you have a hearing loss. And so you might be in a listening environment that's difficult. Let's say there's background noise and you're in a restaurant, like you're out to lunch for their friends, for example, and your ability to hear them is difficult anyways, and then you add in that background noise and it becomes maybe almost impossible for some people. And so instead of saying what for the hundredth time during lunch, you just nod, you start nodding, nodding, you have a fake smile and you pretend you know what people are saying and you just go along with it. And, and, you know, we're always looking at visual cues. We can, we're good. People with hearing loss are really good at navigating social cues so that the other person feels like we're listening to them when we really can't hear a dang word they're saying. So that's one way that I mean by we're, by we're fakers, but there are many, many people who don't disclose their hearing loss. They never would. And there's so much stigma that comes with having a disability. And so that people are afraid to be judged. They're afraid to be viewed as incompetent because guess what? Our history says we look at anybody with a disability and it's not about their limitation. It's about, they're not competent. Like we question people's competencies. Kimberly Right. Right. They're, they're intelligent. Yes. Oh yeah. Oh, absolutely. Doctor Scoresby Yes. Yeah. And so people don't want their competency questioned. And so, um, they're not willing to disclose their hearing loss or they don't want to show that they were hearing aid. So they, you know, they have long hair that covers their, their hearing devices because they don't want to show it. And I feel like we're fakers in that way too, in which, especially as social workers, like we're constantly advocating for people to advocate for themselves. Kimberly Parsley Yeah. Doctor Scoresby Um, but, but sometimes social workers aren't very good. We're not very good about advocating for ourselves and our needs. And that includes social workers, other social workers with hearing loss, you know, even I have multiple family members who have hearing loss, multiple. And, and two of my three children also have my hearing loss and hardly ever do any of these people in my family ever say, what, I didn't hear you. Hardly ever. They just go on and pretend like they heard everything that you say. So even within like our family conversations, we all know we have hearing loss, but we get so used to just bypassing over what we don't hear. That we just pretend or we, you know, we think we heard. And so we just kind of move on. So our conversations are really random at home because no one's hearing each other. And it's like going off into different engines about conversations. So slowing down and saying, I think we need to do this more and more and more. I think we need to, everybody with hearing loss needs to say, okay, I didn't hear you. Repeat that, or this is what I heard. Help me with what I didn't hear. That the more we do that, the more awareness we bring, hopefully the more acceptance we can bring. Kimblery Parsley Right. Of course. And you and I were talking off mic that you have two teenagers, right? So possibly they're just not listening. They just, I say that as a, also a mother of two teenagers. Doctor Scoresby Yeah, we definitely have moments where they're not, they're not listening. Kimberly Parsley Exactly. Doctor Scoresby And there are moments where I'm not listening to them too. Kimberly Parsley Right, right. Yes. Because so much, so, so much video game minutiae that I get, I just cannot process it all right. So tell me about the hearing loss impact website, what it is and, uh, why you started it, what you hope to do there. Doctor Scoresby Yes. So I started building that when I was working on my PhD, because when I saw the gaps that existed in mental health and in, uh, audiology, which audiology is hearing healthcare. So when, when I saw some of those gaps, I felt like there were gaps on, on both sides, on the audiology side and on the mental health side. And so for me, I was designing this website to be able to help bridge some of those gaps so that it would be helpful for those in the audiology world, and it would be helpful for those in the mental health world. It, it takes a lot of time to devote to building websites. So I have not had the same, the amount of time that I've wanted to be able to continue to build that. So there's some there and I will build it over time, but it's designed to bring these two worlds together with helpful resources, bite-sized tips, you know, some, some practical tools and strategies. For example, one of the tools I have on there is an accommodation checklist for therapy so that a person with hearing loss could just print off this checklist. They can highlight or circle what they need from their therapist or from their case manager or from their provider. They can hand it to them. And so instead of having to explain, you know, I have hearing loss, these are the accommodations I need, which more than likely a person won't even ask for that. But if we can have something to print off and to give to the provider that says, please don't sit in front of a window because the light blocks out your face. And I can't read your lips. So if I, if that's already on this checkbox, right. And I can say, don't sit in front of a window, please have an iPad or computer open that has captions that are running, you know, if there's anything that's, that's really important information and you're turned around writing on a dry erase board, explaining a pattern or a cycle, I'm not going to hear that. Please turn around or give me a visual that I can take home and learn from. Anyways, so this, this list is designed to, um, just be a helpful checklist for people to just say, okay, therapist, okay, provider, here's the things that I need so that you're not having to guess. And I'm not having to spend all my time trying to explain my needs. Kimberly Parsley And that's something that you're working on over time. Doctor Scoresby Continuing to that tool that tools already in my website, but I'm working on building other kinds of tools to kind of help bridge some of these gaps. Yes. Kimberly Parsley Okay. And where can people find that website? Doctor Scoresby Hearing less impact.com. Kimberly Parsley Awesome. Okay. I will put that in the show. Dr. Scoresby. It has been a delight to talk with you. I have learned so much. Doctor Scoresby Thank you so much for having me and being willing to discuss all of this. I really, really grateful for the exposure and for the awareness. So grateful for the awareness. Kimberly Parsley I enjoyed it so much. Uh, I feel like I know so much more now. Thank you so much. Demand and disrupt is a production of the Advocato press with generous support from the center for accessible living based in Louisville, Kentucky. Our executive producers are me, Kimberly Parsley and Dave Mathis. Our sound engineer is Michael Parsley. Thanks to Chris Anken for the use of his song change. Don't forget to follow or subscribe so you never miss an episode. And please consider leaving a review. You could find links to our email and social media in the show notes, please reach out and let's keep the conversation going. Thanks everyone.