Listen to empowEAR Audiology Podcasts
Communication is connecting. Join Dr. Carrie Spangler, a passionate audiologist with a personal hearing journey, as she interviews guests who are navigating their own professional or personal journey in the hearing loss world. If you want to be empowEARed or just want to hear some great hearing and listening advice, this podcast is for you!
Meet our Podcaster
Audiologist, Mother, Wife, Advocate, Podcaster
Carrie Spangler, Au.D, CCC-A, is a dedicated professional in the field of educational audiology with over 20 years of experience. She also has a passionate personal journey of living successfully with hearing loss in this vibrant hearing world. Dr. Spangler has turned what many view as a “disability” into an “ability”.
In November 2019, she began her cochlear implant journey, which you can follow at hearingspanglish.blog. Empowering and helping others with hearing loss, families, and professionals is at the core of her daily work.
Dr. Spangler has numerous publications and has presented on topics related to educational audiology, advocacy, and peer supports at the state, national, and international levels. Dr. Spangler is also an active member of professional and service organizations.
empowEAR Audiology Podcast Reviews
I recommend this podcast! Great podcast about hearing conditions and audiology!
I'm a parent of a child with hearing loss. This is an extremely helpful podcast to learn from and be a good parent to my daughter.
I had so much fun with Carrie on her EmpowEAR Audiology podcast! We talked about itinerant teachers of the deaf and how we work to support our students with hearing loss! This was my first time being a podcast guest!! I feel like I could talk about being a TOD indefinitely so it was a really fun experience. Go check it out on Apple podcasts!
empowEAR Audiology Podcast Transcripts
Episode 52: empowEAR Audiology - Chezi Pollack
Announcer: [00:00:00] Welcome to episode 52 of Empower Ear Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Audiology podcast, and I have a special guest joining me today from all the way across the world for me. He is an Israel and it is a pleasure to finally connect with you. Chezi, thank you for joining me today.
Chezi: [00:01:01] No, no worries. Thank you so much for having me.
Carrie: [00:01:04] So I must say that our deaf and hard of hearing world is a really small community and people can get connected when you least expect it. So for us, we have a common connector, Dr. Don Goldberg. And I know as we get into the interview today, I'm going to ask you later on how he became an important part of your life. But to get started today, I'm just wanted to share a little bit about you. You are a teenager that has a really empowering story to tell about your own hearing journey, about getting cochlear implants, about starting a podcast called My Hearing Thoughts. And I just can't wait to get started with this interview. So to begin today, can you just share a little bit about how you were identified with hearing loss? Kind of go back in time and give me a historical perspective. Yeah.
Chezi: [00:02:04] Yeah. So I'm going to jump all the way back from the beginning. So my mom and dad had me on October 4th, 2006, and originally I was born meant to be born on January 21st, meaning I was a preemie. I was born 16 weeks early. And as you know, that baby has to go on the next year and get a lot of support and medicine. And this for me, it was really hard for my parents because they were like, I could have died. So they had to give me medicine. Now, at the time it was very emotional for them. So they were there like literally every step of the way. I was there for four months and the time they didn't, they gave me medicine and. It helped me a lot. I think I don't know so much, but all I know is that throughout when they gave me the medicine, it affected my hearing. And at the time, my parents didn't know that I couldn't hear. Around when I was finally one year old, when I was finally a baby, one year old. They took me to a hearing test. And the doctor, I don't know who the doctor was, but he said. Um, to my parents. Because you can't hear. He can't hear anything. He didn't respond to any of the. The things that they were doing to any of the tasks that they had given me involved doing. So at the point my parents were really. Devastating. They did the most they could. Everyone prayed for me in the community. And then this is when they started looking into where I lived in for basically my whole life.
Chezi: [00:03:49] Originally, I lived I was born in New York and I lived there for one year. But after I got hearing loss, they started looking into more where more places were. It can help me with my hearing. So they found Cleveland and over there they found Cleveland Clinic and that's how they found Dr. Don, which I'm sure we'll get into later. And what they did was so they looked into it and seeing how it could help me with my hearing loss. And they also had to see how they could build on the life they got, what jobs they could do and how they know help me. And eventually they found Cleveland Clinic. And now how it's like the number one hospital for heart surgery and it's really great hospital. And at the time they were like, this seems that it can be really good for Chezi, can help him with his hearing loss. And then we moved it and we lived there for 11 years until we moved to Israel. So it was like a big part of my life also because my friends was the my friends were there and my teachers were there. And so we're getting a little off topic, but. I got my first implant, The Cleveland Clinic, by Dr. Woodson. I think I can't I don't know if I'm saying that, but anyway, she gave me my first cochlear implant when I was four years old. But from a baby. When I was a baby, I had a hearing aid. But at four years old I got my first cochlear implant on my left ear. So this one.
Carrie: [00:05:21] Okay.
Chezi: [00:05:22] Then when I was in first grade, so seven years old, I got my second implant. On my right side. And that's pretty much how I got my hearing loss and how we came to Cleveland and why we're out.
Carrie: [00:05:36] So I'm. Your diagnosis at age one to age four, you are hearing aids in both ears. Is that correct?
Chezi: [00:05:46] I'm pretty sure one year, but yeah, two years.
Carrie: [00:05:49] And then you got Do you remember anything about getting your cochlear implant at least when you were seven? Do you remember?
Chezi: [00:05:59] I think if I remember from four years old. So when I was little, I was obsessed until, like, these little animated kids shows. So I don't know. Have you heard of Strawberry Shortcake? Yeah. So all I can remember is when I woke up. This is when I was four years, by the way. So when I woke up, I remember there being a DVD player on my lap, having strawberry shortcake, and I just woke up from the surgery. I'm like, to my mom and dad. What is this? That I could barely speak. So I was probably talking like a baby's voice, like, what is this? But the I was just watching. They gave me a popsicle. It's like help. It'd be easier. And I'm pretty sure of like, I'm pretty sure I got a headache after. So they gave me a popsicle to calm down. And I just remember waking up to the theme music and then watching that. And then there's another I have another memory of getting mine at seven years old. And this time it was I woke up, but I saw my mom in front of me and the doctorr said, Just finished. I got another popsicle. I don't I forget what this one it's called, but it's red at the top. White in the middle and blue on the bottom and. I never asked for help. And I went to the and I was zig zagging.
Chezi: [00:07:20] I had just woken up and it was so hard to walk. Also, because I had this big bandage on my head since I just got my second implant. So my parents were. And then right after, not long after they closed. I don't know how to describe it, but it's Cleveland Clinic where they do the surgery. It was like a big film notch, like, What's my room? So they put a coat around me. I change, and then I just left. They were done. They told me the next time I need to come in and check in. And that was it. I remember my mom carried me and and my grandparents were there because my mom and dad both work at the same school. So they went to the. One the hospital to put it back. My dad went back to teaching. My mom stayed for this day also because she had just given birth to my little sister Habiba, who was a few months old. So she stayed home for the day and my grandparents with my sister. She wanted me because she was a baby, but I stayed home. My grandparents from my mom's side were there and just kept after me and watched me for I think if I'm correct, it was two weeks I got off and yeah, that's how that's the only thing I know.
Carrie: [00:08:37] Do you remember when you were activated then for the first time when they actually put that turned on the implant?
Chezi: [00:08:47] I do remember a little bit. It was like life changing because to me, I always like to put on hearing aid. But when I put the cochlear implant on, it was like a new life experiment, I guess you could say, because it had a new way of being a processor and adjusting. And normally, like this happens a few times where I lose my implant or it dies throughout the day. So I wear a different one and I take to school. And only when that other one's on, when I put the other one on, it just goes really. And that like that moment before it heals that way because I'm wearing like the Nucleus 6 and now I'm putting back on the Nucleus 7 and they have a similar viewing program, I guess you could say. So it's a different way of hearing and his way differently. So that's how I felt and what sound like when I first put out my. I'm like, This is life changing. It's just so much better. And it's just been amazing.
Carrie: [00:09:51] And I know when you first get the cochlear implant, it sounds so much different than what a hearing aid would sound like. So I am assuming that that's kind of where Dr. Don Goldberg came into your life. Can you share a little bit about how you met him?
Chezi: [00:10:10] Yeah, So if I'm correct, Dr. Don, in my interview, he said that when your baby it's normally a playdate with the kids and the parents, they go for learning because Dr. Don helps them learning with how they can talk to that and how they communicate with them because it's a little harder. So my mom and dad when I was a little baby, but. As time goes on, when I have my cochlear implant, that's when Dr. Don really came into the picture. I remember learning all of these things. We would always this like browns black sack. I don't know what it's called, but he put it over his mouth. He would say the sounds and you would go over and over with the hearing. So it would help me, my sound and my words. And then we would also we learned all of the 50 countries of the 50 states not countries and us A and we would do like these games if I asked how much longer I would lose a penny and there was a whole jar penny or he'd give snacks and you had to wait and you had to choose and you had to, like, make these big life decisions between two big snacks. Like, oh my gosh, what do I want, a fruit roll up or Cheez-It? And all. All. It did just help me feel better. I think it helped me became a better person and helped me think positive and not be like, Oh, I'm never going to get this right. It helped me not give up and help me become a better person. So that's why my slogan is Cheer positive. Think positive. Like I only feel good and I hear better and I think positive. And I'm like, That was really hard. But I did it. But Dr. Don, he was with me for so long, and then he came into my the 13th birthday, my bar mitzvah. He came all the way from America to Israel. So that was a big moment. But he's really been a big part of my life now. I was so glad I got to have that interview with him.
Carrie: [00:12:10] Yeah, well, I'm glad that your parents did all that research ahead of time to find a great place for you to get your cochlear implants and have the follow up care that you needed afterwards, too. And to have a it always takes a village of people to surround you when in this community. So you found it.
Chezi: [00:12:33] Actually, I remember Dr. Don in an interview. He, my dad and mom were very protective then so they answer that a checked Dr. Don out, which I thought was kind of funny. So they're like a madam. And I'm like, okay, what are your qualities? What what we do? What is your main goal? And that after that, everything when I was history, I become a better person in my healing was way better.
Carrie: [00:12:59] Good So kind of moving into your So you lived in the United States for the year for 11 years, right?
Chezi: [00:13:07] Yes. So when I moved to Israel, 12 and a half.
Carrie: [00:13:10] Okay. So how was it going to school in the United States?
Chezi: [00:13:16] Well, to me it's like really different because in the United States at school, I'm speaking my first language, but also, like all the teachers knew about my hearing loss, I knew how to dealt with it. They knew that I have a microphone. They knew that I got tooken out for speech and they knew that I was it was a call for me. And of course, they were teaching me my first language. So it was way easier. And I had like there were a few other kids in my old school, one kid in my other grade that has a hearing aid not a member thing. It's always nice to know someone that who understands and knows what it's like to learn enough hearing loss. And so it's way different than I expected. Like the first year I came, it was a new beginning. And then I'm like, No, now. The second year as a new beginning because the first year Corona happened and one it was on Zoom two, I was learning a different language everyone was in. It was way harder for me because of my hearing. I'm like in the first row of the class and so many computers. So the internet broke off. It was way harder. But really, to me it was the second year it was my beginning and it's when I developed the new words and understood everything and with my hearing loss, I finally did it. And then the first three years I did open, which means like you basically go put off class and you learn new words in a different language and sentences and helped you. So after three years, I'm on my fourth year now, I'm going to Israel and I still have a little hard time, but I can say that I now able to have a full conversation and I have managed. I pulled through.
Carrie: [00:15:00] Wow, that's amazing. So the different accommodations or supports that you ask for because you're learning a new language and then you have your hearing loss on top of it.
Chezi: [00:15:12] Yeah. So besides open, I've had I go to something called Shema where there's other kids like me who have hearing loss different ways. If it's a hearing aid, if it's I forget what's called the mic that you put on your head and you can hear.
Carrie: [00:15:30] Baha yeah.
Chezi: [00:15:30] Yeah. Or if it's a cochlear implant this I go every once they say I'll be going tomorrow because it's Tuesday anyway. So it's so great to have all these kids that are like me, different age, but we're all friends and they're like me and it's so great. And that's something I really like to do because open but also I don't know if I mentioned, but I have a twin brother. My twin brother Gobby were identical, so people say we always look alike. So I'm always like, Didn't I just see you? I was like, No, that's my twin brother, Gobby. So he's a main part of my life. He's helped me. So if I don't understand anything, go translate and he'll make sure my hearing is okay and that nothing's wrong. So Gobby is also a big part of my life helping me. And even though I don't say it to him, he's really an amazing brother.
Carrie: [00:16:21] Wow, that's great that you have all of those supports and then that group of other students just like you, too, in Israel that you can connect with. And so do you have special like do you have special tutoring or do you use like assistive technology in the classroom, like a remote microphone or anything like that?
Chezi: [00:16:44] Well, I do use a microphone. It's called a mini mic. So it's like the pompom is that you say the thing you put on your head, like, that's metal. It's like that. Exactly. Except when I press the button on, I just hold my stance for 3 seconds and then it goes straight to the mini mic and the teacher will put it on it top of the shirt, whatever he or she's wearing. And I just feel way better. Like all of his or her words go straight to the microphone and I hear way better. I'm about special tutoring. For the last three years I went to AV, so that's like a speech therapy for me. So in Israel and then I'm from Shima that I go to every Wednesday. I had a tutor every Monday.
Carrie: [00:17:38] Okay, well, that's great. So I guess, like, kind of thinking about you now as a teenager, and I am an educational audiologist, so I work in the schools with a lot of kids from preschool all the way to graduation. And I know that the teenage years can be tough for anyone, but especially when you have a cochlear implant or your deaf or hard of hearing. Do you have any advice for teenagers who are out there that might be deaf or hard of hearing?
Chezi: [00:18:15] My advice is. Don't give up. I've always believed that life has its challenges, even if it's a challenge to the whole life, or just a time when things get tough. Life has its own challenges, but if you can climb over it and master it the right way, only like greatness will come to you. You will achieve only great things and you can do a few in a different way. So for me, I write my own songs and I just put out my own personal experiences for my hearing loss or how it affects me. And I just write it down. And to me that's my achievements. I'm writing songs, but I'm also sharing it on my podcast, my hearing thoughts, or I'm a few people I know are using it, and to me that's like my way of achieving it. But also I've had some challenges like having hearing loss and moving to Israel at 12 years old with learning a new language, especially with hearing loss. Those are my challenges, but I'm sure I have many more to come, but I will get through them. But to anyone who has hearing loss with a teenager, things get tough, but it's worth it to get through the challenges and everything will be okay. Trust me, I've had my share of trouble.
Carrie: [00:19:32] Well, that's a great mindset to have, and I love that you have an outlet of writing songs to get your emotions out there, but to be able to share with other people too, who may need the experiences that you have and share. So getting to your podcast too, I love talking to other podcasters and I know you have a podcast on Spotify called My Hearing Thoughts. So what made you start this podcast?
Chezi: [00:20:06] So it was all on a Saturday morning, but Saturday afternoon, but we call it Shabbat. I was with my dad. We were just chilling. It's this was like in the afternoon and I was like to my dad, Hey, Daddy. Hey, Dad. I want to have a more way to, like, end these questions. I always just ask questions when I meet new people or some of my friends about everything, about my hearing loss. And I'm like, How can I end it? How can I have a way? What if they ask questions? They just go to a website or something and they have all the answers from me. My dad's like, Why don't you make a podcast? Your uncle has a podcast. And I'm like, That is a great idea. So the whole rest of the day, I was just with my dad and my mom thinking of podcast ideas and I'm like, I want something to say about my thoughts, what I think and what I know of it and my perspectives, but also like something that mentions, Oh, I have a hearing loss. So that's how I came up with my hearing thoughts. And in the beginning it was just about saying my perspectives from each thing on how I listen to music straight to my implant, like Bluetooth or how I swim or how I sleep, or how I read or how I go in the shower or how I listen in the class or in big crowds, in stadiums, and eventually to also my music, the songs I write, because I also put my feelings through experiences of hearing loss or just regular trouble that I've had and challenges that go through my music.
Chezi: [00:21:41] And I also talk about that on the podcast, on my hearing thoughts related to my hearing loss and. Now, recently, I just like I've been working on my songs and trying to find those challenges of making loss. So I just took a break from my podcast, but I'm now in back four new episodes every Sunday. But anyway, but my music really, to me, that's why I want to do my podcast. I want to get. Answers of. People have asked me about my hearing loss out onto my podcast. So listen, instead of asking me, but also my music. So I switched one episode, and normally in the music episode I did, I'm like, Please share this. It really means a lot to me. I want to grow up to be a singer songwriter and I want to inspire people. And I still do that. I still do that outside of podcasts. Well, now I grow into not just being by myself. I have on my podcast segment. So do games or do a segment about my song I write. I will do a segment about my hearing loss or a question someone asked me or I at the bottom of my description, there's a link where they can send a voice message and I play on my podcast.
Chezi: [00:22:54] But now what I really do is I, I realized a few months ago this is all wrong for my podcast like you do. I want to get other perspectives of hearing loss. I don't want to just get mine. I want I ask people, what is it like for them to break down the hearing loss barrier and what they think of hearing loss and what they how they feel about kids have hearing loss. And I try to get other perspectives, but I ask like I also get my family and friends on the show and ask them what the how their life was for when I came in the picture. And I really try to get those messages out with hearing loss. Be who you are, Don't give it. Everything happens for a reason and I try to get other perspectives out. And that's what I've been doing lately. And that's also one of the reasons why I'm really glad that I'm on your show, that you reached out to me because I'm getting my own perspective out on your show. And it can grow not just your podcast, but my podcast more. And we can help people hearing loss more and we can spread a message. So that's also a main thing about my podcast I love.
Carrie: [00:24:00] Yeah, No, I think that idea of having the everyday life questions and answering those is so important because those are the question that parents who, you know most of the time parents who have a child who has hearing loss, this is new to them because they that that's the first experience they've had with hearing loss. So for you to be a teenager thinking about your everyday life and the questions that you get every day and answering those questions in these small, thoughtful ways, and your podcast, my hearing Thoughts, is going to be a great resource for parents, for individuals who are deaf and hard of hearing for teenagers, for young kids, and it really impacts a lot of different people. So thank you for putting all of that out there, because I know you have so many episodes already of, you know, advice and your own hearing thoughts. That's but I love expanding to other perspectives as well.
Chezi: [00:25:07] Thank you so much. That really means a lot like something I'm putting into. A lot can just help and make a difference.
Carrie: [00:25:14] Yeah, well, as we kind of wrap up today, is there anything that I didn't ask you that you had wanted to share today on the Empower Your Audiology podcast?
Chezi: [00:25:28] I actually wanted to ask you if it was okay, your hearing loss. I don't know if you explained on your podcast, but I'm curious to know, like during your hearing loss journey, was there any challenge that you went through that you think that's like? Something big that you could also take out as a message, like to me?
Carrie: [00:25:53] Yeah. I think your message of, you know, not giving up and and staying positive is is a message that is important to me as well. And that's kind of why I have the name of EmpowEAR Audiology. I wish that I would have had someone like you that was giving advice when I was younger. And I think that's probably one of the I think important takeaways for me is growing up, I never knew anybody else that was deaf or hard of hearing, and I thought that was hard. And I grew up in the Cleveland area as well, so south of Cleveland. And I think being able to have connections with others and know that you're not the only one out there who is going through this journey and your perspective or your journey might be different than somebody else's. But knowing that there's somebody that has a similar perspective or similar experiences, that is really important. So I think that would be my key takeaway is that connection piece.
Chezi: [00:27:07] Yeah, I totally agree with you. Yeah.
Carrie: [00:27:11] Well, I just want to say thank you for spending some time with me today sharing your hearing journey and this podcast and your willingness to share your everyday experiences and navigating life as a teenager who has cochlear implants is really going to help others. And thank you for your podcast, My hearing thoughts, and I would definitely link that up in the show notes today for anyone who would like to follow you and your day to day experiences and everything that you're going to do to continue to expand. So thank you for being a part of today's podcast.
Announcer: [00:27:53] Thank you so much for having me on the show. This has been a production of the 3C Digital Media Network.
Episode 51: empowEAR Audiology - Dr. Chad Ruffin
Announcer: [00:00:00] Welcome to episode 51 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Ear Audiology Podcast, a production of the 3C Digital Media Network. I am your host, Dr. Carrie Spangler. A passionate, deaf and hard of hearing audiologist. Each episode will bring an empowering message surrounding audiology and beyond. Thank you for spending time with me today and let's get started with today's episode. Welcome to the Empower Ear Audiology Podcast. I'm really excited to introduce my guest today. I have Dr. Chad Ruffin with me today. He was born with a severe hearing loss and he is uniquely equipped with the skills and experience necessary to improve the lives of hard of hearing patients. Dr. Ruffin completed surgical training at Indiana University, one of the most rigorous otolaryngology residency programs. He also completed advanced training and ear surgery and cochlear implant research as a faculty physician at Indiana University. He is passionate about using his journey as a deaf patient, surgeon, auditory neuroscience scientist and hearing technology innovator to help others succeed with hearing loss. So, Dr. Ruffin, thanks for joining me and the empowEAR Audiology podcast.
Chad: [00:01:44] Thank you very much for having me. Carrie I'm excited to be here. And that was quite the introduction. I'm really appreciative of it.
Carrie: [00:01:51] Well, I feel like in the last few years I circles, I keep kind of coming together and it was great to finally meet you in person back in May at the American Cochlear Implant Alliance Conference.
Chad: [00:02:08] Yeah, I know we've been talking for a bit, and when you came up after I asked a question, I was super surprised. It's been great meeting you and chatting from there.
Carrie: [00:02:18] Yeah. So. Well, thanks again for being a part of the podcast and I'm really excited to find out more about you today. But I thought we would maybe start out with going back on that trip down memory lane. And can you just share with our listeners a little bit about your own hearing journey and how that all started?
Chad: [00:02:45] So I think there was probably a revolution in hearing health care for children who are born deaf. But back in the late sixties and seventies, as diagnosis and treatment started to open up, then I was born with a severe hearing loss, and I actually wasn't identified until around three years of age because I wasn't talking. I didn't respond to my name was called behind my back, but I did follow commands and I understood people because I was a very adept lip reader. Indeed, I did so well that experienced audiologist pediatric audiologists didn't think I had a hearing loss. And so my mom eventually took us down on a four hour trip away from home because I was I was born and raised in the Louisiana country and we went to Baton Rouge for an auditory brainstem response test. And that's where we found that I had a severe to profound hearing loss. And I was fit with hearing aids and given lots and lots of speech therapy. And by the time that I entered kindergarten, I was probably ahead of my peers for reading and talking. I used amplification up to around the point of fourth grade as the only accommodation, if you will, or treatment for hearing loss. And then my hearing had a sudden drop in fourth grade and I started using wireless FM systems or what's the modern name for these things called.
Carrie: [00:04:24] We call them DM sometimes digital digital modulation system or remote microphones. There's so many names and acronyms. Right?
Chad: [00:04:34] Right. So I started using that. And with that device, I was able to understand the teacher, and I did really well in school. My parents were a little bit different because they were entrepreneurs, and even though they came from a very either impoverished or middle class background, they did very well for themselves and super resourceful. And they're the quintessential parents that you see of successful children with hearing loss, meaning they go out and they find things. If something isn't followed up on, they will follow up on it. And because of that, I was successful and. I was offered a cochlear implant in Memphis, Tennessee in 1989. I was about eighth grade at that time, but I was one of the one of the first of the computer generation. So I grew up on a computer I had one since I was in second grade, and I thought that it was probably a little bit too early to consider a cochlear implant because, you know, technology will get better. And I didn't get one until I was in my later year of college because I just my hearing just worsened and hearing aids were no longer beneficial. The remote microphone still worked well, so it was the only accommodation that I had, really. And I had the implant when I was 21, and it really did change my life. I was able to participate in conversations that I could not do before. You know, before an implant, one on one conversation was very difficult and much less a group. But now I can participate in a group conversation. And it was about then that I realized that I had the first inkling that it's not really about how much you hear, it's more about how well you communicate. And I probably shouldn't have gotten I probably should have gotten a cochlear implant when I was in eighth grade because I would have had a better social circle and probably better social skills through my life. And it would have made it probably would have made a demonstrable difference in the trajectory of my life. Police. On. Can we do that?
Carrie: [00:07:02] What? Good.
Chad: [00:07:03] No. What? Sorry. Then I turned you off. Sorry.
Carrie: [00:07:06] That's okay.
Chad: [00:07:08] Let me figure out how to meet this. Okay. Yeah, it was. It wasn't until I got my cochlear implant when I was 21 that I realized I probably should have gotten it earlier because I realized then or had the first inkling that it's not really about how well you hear, it's about how well you communicate. And you don't need perfect hearing to be able to communicate well. So I think that if I received an implant when I was in eighth grade, I would have had a better, more normal social circle and better social skills as I got older. And that probably would have parlayed into some different choices that I would have made for my life even at that early of an age. So. I didn't get my cochlear my second cochlear implant until I was 31, and I think we'll probably end up coming back to that later in the interview. Why I got that and how that changed so.
Carrie: [00:08:14] Yeah, well, that's a great history. And I love how you said about your family, your parents, that they were so resourceful. And that's a big key for success for a lot of our kids who are deaf and hard of hearing is having that family support along the way. And it sounds like you definitely did. And I'm impressed at age three and you were able to catch up. So you must have had some really good therapy to help you learn how to catch up with those auditory skills and communication skills at that point in time, too. But we see our kids now who have the newborn hearing screening and close that gap so much quicker than we did. I wasn't identified till age four, so I had a lot of catch up to do.
Chad: [00:09:06] Yeah, I had twice weekly speech therapy and then Michael and my boyfriend, who was the first kid in North Texas to get a cochlear implant, had much more frequent auditory verbal therapy, and I would say it was formal or AVT meaning was more than just getting the words, which is what I did and talking or doing actually forming the words correctly. Michael had a had a much more intense listening and learning to talk and hold a conversation, all of those skills. And I do think that his earlier intervention does play out a role in terms of how we verbally process the world. Mm hmm.
Carrie: [00:09:57] So you talked about you got your first implant around 21 and you were in college at that point. Did you know that you wanted to be an otolaryngologist at this point?
Chad: [00:10:09] No, I was in Backwater. Louisiana is where I grew up, so my exposure to the world was pretty small. And if you wanted to be successful, I think a lot of people thought about going to college and then becoming either a doctor or a lawyer. I don't think we really had much exposure to MBAs. So I think that my field of view was somewhat narrow. And I really I love science and I like the art of medicine and the art of bringing a science together with the real world, which kind of also happens with flying, because I'm also a pilot and. So I kind of discounted medical school after getting my implant because. I wasn't sure that I was ready for the level of commitment that it requires. So I taught high school for a couple of years and then I was in ultrasound tech for a year, and it made me realize that medical school really was probably the right choice for me. And it was been it was a very interesting journey because back in 2003, there really weren't many deaf people in medicine. We had the ADA passed only ten years before, and I mean, that's actually kind of shocking to me now, being the age of 45 and understanding that culture. Cultural change takes a while to come along, and it's kind of shocking that I started medical school at only ten years after the passing of the ADA, and some of the rights that people take for granted now are coming from the first people who went through medical school, like Dr.
Chad: [00:11:51] Phil Zazu and someone in my generation, Michael OGenny, who went to court over some for some of these rights. So it was a very inhospitable world, you know. So I remember I had a choice of medical school to go to, and I ended up going to a public one because I thought that the accommodations would be better there, but they actually weren't. And. After I was admitted to medical school, the dean of the medical school found out that I had hearing loss and was deaf. And honestly, it freaked them out and they seriously reconsidered my admission. And I went into a meeting with a lot of different people. And really, I should have had a lawyer present, but it went well. And I told them how I would plan to manage X, Y and Z problems that may come up. And what I remember one faculty member came. Said to me in the meetings like, Well, what happens if you go through all of this training and. And you're not able to perform clinical medicine. And I just looked at it. I was like, Well, medicine doesn't march forward without great research, and that is still an option.
Chad: [00:13:17] And so I went through my first couple of years of medical school, and I decided to be an ENT or Otolaryngologist ear, nose and throat doctor after I completed a two year research fellowship at the University of Washington. It was a fantabulous experience because that was there where like my. I was exposed to so much creativity. I mean, top class students in engineering. And I got to be in one of the premier laboratories for cochlear implants in the world. And it was just a truly amazing experience because it was there that I was able to see that the world is not a path you follow, but you can make that path. And so I really enjoyed cochlear implant research. At the time I was involved in understanding how implants changed excuse me, how the auditory nerve encoded speech, both normally and under electrical conditions with the electrical hearing of a cochlear implant. And that was super fascinating to me. At that time, everyone thought that it would be if you can produce a perfect encoding in the auditory nerve, that hearing loss is fixed. And it was a very exciting time for implant research because we thought that we had come to a model that would help us do that. And ultimately it didn't. But but that was my first exposure to cochlear implant research is how the how do we best encode the sound of an implant.
Chad: [00:15:04] And because I really enjoyed that, I decided to go into ENT because it was clinically it fit together. It's a really diverse field. Surgically, there are all kinds of different technologies you can work with, and you are working also with the science of communication and voice surgery for the communication of voice. So the interesting thing is I thought I had my implant. I thought that the challenges that I had getting to medical school were behind me and that wasn't the case, unfortunately. ENT is one of the routinely one of the most difficult specialties to get into because it's exciting. The lifestyle is great and it does well financially compared to other specialties. So it took it actually ended up taking me about 30 interviews over a couple of years to get in. I had to do a second internship. Another research fellowship to get in just to prove people that I had what it took. And that was really the first time that I realized that I was different from other people because I had given it my all. I had done a research fellowship. I think that is most analogous to doing a road scholarship for medicine. And I graduated very high in my class. But at the same time, people were not listening to reason and didn't believe that I could do this.
Chad: [00:16:43] So, I mean, like that is that was a pretty traumatic blow It took about. It's probably taken some now in my life to move past that in a meaningful manner. And it was the first time that I ever labeled myself as disabled or different. And it was then that I started realizing that you can hear everything in speech in terms of the lexical content or getting the words. But there's a lot more to communication that is not available to people with severe and profound hearing loss. And that's really what's changed the trajectory of my career in terms of what I what my mission in life is, is not to give someone perfect speech. We can't do perfect speech perception. We can't do that right now, even in the best outcomes of cochlear implants. And we even with better hearing aids, better cochlear implants. We are not making a dent in how deaf and hard of hearing people achieve meaning. The socioeconomic status of deaf and hard of hearing people hasn't changed in the nearly 40 years that the ADA has been passed. So there clearly is something more, and I think there's this missing piece of turning the conversation more towards how we help people communicate better and address gaps in care with better counseling. Because even the best hearing aids and best cochlear implants are not cutting it.
Carrie: [00:18:22] Mm hmm. Yeah, I agree with you there, especially being a cochlear implant user, too. There's much more to speech perception than the cochlear implant, and we'll get into that to how we can better manage that communication. But just kind of taking a quick step back to that medical school and going into ENT. Do you feel like that I know you said it took me a while to get to the place where you're kind of okay with the discouragement that you had, but do you feel like that was a springboard to maybe having more grit and resilience and passion for what you do because of that?
Chad: [00:19:05] Well, that's a grudging yes. I mean, I would never want to go through that again. But. Yes. I mean, I have a patient who is also a surgeon who flew in from across the country. And because she is a surgeon, she had been to. The best resources for her situation that. You know, the world could offer. She'd been to all the big centers and she said that no one would quite talk to her the way I did about how various ear problems affect the quality of life and mental health and. Accommodations and the whole spectrum of things. So, I mean, like that's something that I routinely see. And in the exam room, like when I have couples with you have when I have a patient with sudden hearing loss and they have their significant other with them, I will look at them and tell them I'm like, This is going to be difficult for you, too. It's going to be a big adjustment. And we address mental health issues. Make sure that they get counseling if they need it. So I think that hearing health care has historically not been great in America because audiologists and ENTs are not encouraged to play well together for a variety of reasons, both what's in the law and the just the history between the two specialties over time. And I think that really needs to change and we can accomplish a lot more if we move beyond that.
Carrie: [00:20:53] Yeah, well, I'm sure your patients appreciate the insight that you have as a cochlear implant user from a personal perspective. And then your professional expertise is, you know, obviously amazing. So it helps to have both of those. And I kind of had a similar experience going into grad school or in undergrad where they called me in to the clinic director and the dean called me in and said, I don't think some someone with hearing loss can become an audiologist. And I was like, What? Like wait. And so, I mean, I didn't have to go through, you know 27 other kinds of interviews, but I still left that meeting devastated, thinking what, like, this is our profession and you don't understand how to make some accommodations and supports. And I really wasn't ready to act. I was shocked and I'm not ready to respond with a good answer at that moment in time, I had to go back and process it and make another appointment and share how I could navigate through this. It might not be different. It might be a little different than my peers, but I can still have this perspective that my peers will never have.
Chad: [00:22:23] Right. Right. I mean it. Let me think. I think that coming from the background of my entrepreneurial entrepreneur parents and the confidence that that instills to be able to do something and being successful at every other part in my life, I question myself like, am I going to be a great surgeon? I mean, do I have that ability? And when I was out of training, you know, I mean, like, I still I did my surgeries. They went great. When I got around to cochlear implants, it was kind of like. Crazy, to be honest with you, because I did my first implant surgery as an attending and the patient calls me the next day is like, I can still hear. I can hear water splashing in my ear. And I was like, Well, I hadn't planned on that, but I that is awesome. And. I've since learned that my hearing preservation rates and implants are as good as they come. They're actually ahead of published reports in the literature, and I kind of learned why that is in terms of or suspected why that is. But it's great to have like a different and fresh eye about things and the diversity that having a different background brings to a job.
Chad: [00:23:57] Because I can tell you that I do my implant surgeries differently as a result of my own perspectives and thinking about it. So, for example, I mean, a lot of people don't get cochlear implants because they're scared to death of losing their residual hearing. And one of the reasons why I try to preserve hearing on every patient is to to allay that fear, even though in the end. If you had to calculate the percent of variance or how much preserving residual hearing helps the average person, it only contributes to 10% of their final performance. It's not much, but it contributes to a lot in the community. If you can tell them, you're probably not going to lose your hearing right after surgery. But I can't tell you what's going to happen in the next year. But right after surgery, it's probably going to stay pretty close to what you had before if I do it. And. Yeah. It's just it's been it's been fantastic to move beyond that initial huge blow to self esteem, you know.
Carrie: [00:25:05] So yeah well I can, I can relate from an audiology perspective that it brings a different perspective to the patients and the families that we have the opportunity to work with. Well, I thought I would go through some different common questions you might get as a CI surgeon with cochlear implants, but I thought I would ask you first. Do you is there like one question that you always get because you are a surgeon with cochlear implants where it might be the most common question.
Chad: [00:25:41] From my patients or in general from anyone.
Carrie: [00:25:44] Like just because you have a cochlear implant and you are a cochlear implant surgeon. Is there like a question that people are always curious about?
Chad: [00:25:57] On. I think it probably you can divide it into two categories, like people who are in the office with me and then people who talk to me outside the office. In the office. I think it's kind of funny because people are like, do implants work? And I'm like, Hello? I know I'm relatively a star performer, but I'm talking to you. So I think that's probably the most one that I get. The one outside the office is usually students coming up to me and saying they want to go into medicine or they want to go into surgery. And I think right there, they. Let me back up. The most common question I get outside of the exam room is from students and parents who are wanting the best for their child or wanting to go into medical school or become a surgeon. And they will ask me, So how do I hear in the operating room. And a lot of these people have not even gotten to medical school yet. And I really just turn the question around and I said, you're. That's not really the question. Being able to communicate in the operating room, if you have some hearing, was probably going to be fine. You may require some accommodations and you may have some resistance. But the real question is how do you communicate with people? And I don't think that people realize the intensity of communication when you are in medicine because you are talking anywhere from someone who has the very, very low or no educational background.
Chad: [00:27:43] Maybe they're illiterate to someone who is a CEO, you know, and those conversations happen daily. So you have to have the communication skills to be able to rapidly bridge all that entire spectrum an trying to get the students to have some insight into that. Really, anyone is really difficult and I have to be really careful when I try to bring up like how they may communicate or something. I'm like and I feel like I have that responsibility because no one ever told me, you know, like I was probably a little weird in my twenties, to be honest with you, as a result of my hearing loss and interpersonal skills. But no one ever really took the time to say that and to help me understand. What they meant because this is not hearing loss is an invisible diagnosis. The ways that it affects people is invisible. There's no tangible quality to it that you can just point to outline and this is how it's affecting you. So there's no language for laypeople or really even professionals to describe some of the issues around hearing loss other than language deprivation or social deprivation. And that is something that I think is a really hard skill to have, and it's still something that I'm working on in developing with both my patients and students. So.
Carrie: [00:29:15] Yeah. No, that's that's good. Kind of that other perspective that people don't get because it is invisible and it's hard to figure out what some of those nuances are along the way. So I'm going to just ask a few other questions. As for a surgeon, so one question would be. Since you are a surgeon that has a cochlear implant. How would a patient or a potential patient choose a surgeon? What? What? What should they be looking for in a cochlear implant surgeon?
Chad: [00:29:54] I think I would probably have to answer that based on if I needed a cochlear implant, what I would do. I would find first just the technical qualifications of the surgeon. I would look for someone who has a hearing preservation rate of 90% or greater. That tells me that they had the skill to get the electrode in the exact right place at the cochlea and that they care, because not everyone does. The second thing I would look at is not just the surgeon but the audiologist. For me, I would want to walk in an office and see that hearing assistive technology is offered and encouraged to patients because 80% or eight out of ten patients will get better with a cochlear implant, get better hearing, but about 20% won't. And you really have to be prepared to be in that 20% where you don't get increased benefit relative to your hearing aid. So I think that having a surgeon and an audiologist who looks at that big picture is super important. I think it shows that they have the foresight and the care to invest in these resources for their clinic. I think also I want a team that understands what I do for work and can relay to me what it's going to be like after an implant and help me prepare for that, for example. So some of my patients are fortunate to be able to work remotely and they have questions about, Well, what am I going to do if one of my ears is down and I really need that ear? How am I going to hear, you know? So I think that having a surgeon who understands that and an audiologist who understands that as well is really, really important. So you have to look at the whole patient when you make these decisions. And I think that is super essential. Mm hmm.
Carrie: [00:31:59] Yeah. Because I think sometimes the layperson thinks that you get a cochlear implant, you get it activated and you just go and there's that was the easy part, right? Everything afterwards is the hard part of getting a cochlear implant. So I think that is great advice of looking at a clinic that that is looking at the whole person and the audiologist and surgeon are in good connection with each other and communicating with each other to. What? I'm going to ask another question. Are you ready?
Chad: [00:32:34] Sure.
Carrie: [00:32:37] All right. So should someone wait? If they are a true candidate for something better to come along? So they went through the whole like consult and the the clinic says, Hey, yep, you're definitely a candidate. And then the patient or the family is like, Well, I think we're going to wait because maybe stem cell research or hair regeneration or technology is going to get better.
Chad: [00:33:10] No, I don't think people should say.
Carrie: [00:33:13] Yeah. What would you say.
Chad: [00:33:16] For stem cell? Hair cell regeneration therapies? I would say definitely do not wait there consistently. Is it going to be another ten years? Another ten years? So the other thing is, if you're young and you get one of these therapies, say you're in your twenties, you have another. 50 to 60 years of life ahead of you. And that's a long time that a complication from one of those therapies could develop, you know. For some medicines, we don't see their complications come out until like 30 years later. So this is a real this is a big deal if you're in your sixties or something and, you know. These therapies were actually available. It's a different story, but there's nothing really on the horizon horizon for the immediate future in terms of benefits. There's only one. There's only one important advancement and that may be coming out. And I honestly don't know what the status of this is, is having steroid eluting electrode arrays. And the reason that's important is when we do implant surgery, we can give you steroids around the time of surgery. We can put steroids right by the electrode. But there's that's really actually absorbed pretty quickly when we do that to try to preserve residual hearing, decreased scar formation inside the cochlea. And because that clears up so rapidly.
Chad: [00:34:54] The real loss of hearing, if it occurs, happens in the next year usually, and as a scar builds up. So there have been some steroid eluting or steroid releasing electrode arrays that are designed to release steroids for a while until the body stops its activity against the scar formation. And that would be the only thing to wait for in my mind. But even then, people who have residual hearing and they keep it for a while and they lose it, they're still going to be doing better than they are with their hearing aids. So it really depends on how long are you going to wait, because a lot of people don't realize how their quality of life is meaningfully impacted. And to be honest with you, I don't. I, I don't think that I would wait. But that decision may be different for someone who has a lot of residual hearing and maybe they're a musician and they need that actual acoustic hearing that could be benefited from a steroid eluting array. But at the same time, they could get an implant in one ear, a standard one, and then wait till they implant the other ear. It really, really just depends on the patient and what their priorities are.
Carrie: [00:36:18] Yeah. Sometimes being in more pediatric educational, I get that question from parents a lot. And for I think children waiting isn't really a good answer if they're truly a candidate because of the neuroplasticity of the brain and language development and education that goes along with it. But I see a point for an adult who has a lot of residual hearing and maybe going bimodal might be a great option to.
Chad: [00:36:49] Right. You bring up a good point because kids with hearing loss, if they're born to hearing parents and they don't sign, that is the goal is not hearing the goal is language development. And they have to have access to all speech and language. And if they need an implant, they need an implant. If the parents sign is a different story, especially if the kid is embedded in the signing environment, because they will be getting language, the community with which to which they're exposed to may be smaller, but they're still going to be developing language. And that's a good thing. Mm hmm.
Carrie: [00:37:24] All right. You ready for another question?
Chad: [00:37:27] Bring it on.
Carrie: [00:37:28] All right. So you touched on it earlier, but what are the limitations of a cochlear implant?
Chad: [00:37:37] So the limitations of a cochlear implant, I think you can think of it as really as we hear. Because we hear changes in pitch and rhythm across many frequency bands. And the cochlea is kind of like a piano keyboard. It has a spatially separate sound out from low to high frequencies. And a piano keyboard has 88 keys. And we hearing people can very easily tell the difference between each one. They can tell whether it's a happy or sad note. They can tell whether what the melody of something is. If you just leave, pitch in there, remove all the timing cues, meaning each key is pressed for the same amount of time. There is a defined interval between each key presses called asynchronous melodies, and people with cochlear implants can't hear that. Identify those well. So music is primarily heard or pitch is primarily heard is changes in volume across several frequency bands, and that is a big limitation of cochlear implants. They actually do really well in quiet for picking up words, but when you start moving over into complex listening environments, noisy speech, particularly when that speech is competing speech, then the pitch information becomes crucial. You need to be able to segregate various audio streams based on their pitch, and that's how normal hearing people can pick out a voice can pick a voice out of a crowd. They hone in on that fundamental frequency, they pick that voice out, and their brain will silence or become inattentive to the other voices. On people with cochlear implants because they don't hear pitch well, they have 16 to 24 electrodes and really you need about 64 if you're going to start getting up into being able to hear pitch better.
Chad: [00:39:46] But it's not possible with the cochlear implant to deliver that much information. It's a different story. But because you don't hear pitch, you don't hear music. Well, you don't hear speech and background noise as well. I think those are the two main limitations for implants. That also translates into another limitation, which is we think of hearing speech as hearing the words. But really they're and that's called lexical speech. But really, there's an entirely other different property of speech, and that's called indexical speech, where we hear the emotion, the tone, the gender, who the identity, who is speaking. Are they healthy? Are they tired that day or are they physically fit? You can tell all sorts of things, dialect where a person comes from, how much money they make. You can tell all kinds of things from Indexical speech and people don't hear people with cochlear implants don't hear an indexical speech problem. Excuse me, Do not hear Indexical speech cues very well. And I think this leads to some of the communication issues that we have because normal hearing people, they are enveloped by another person's voice. It's like going out and looking at a mountain vista. There's no there's an emotive quality to it and there's no processing of it is something abide that hits them and they're processing both the words and speech at the same time. And even the words. People with normal hearing don't hear an individual words, thoughts pop in their head. They have a vibe associated with that based on the indexical properties of speech.
Chad: [00:41:26] And people with cochlear implants are using so much energy to hear and trying to figure out every individual word. And that's just the word that they may miss out on these indexical properties that communicate what a speaker means beyond what they actually say, the hidden part of speech, so to speak. So this is where the communication problems of hearing loss arise from is not having the complete picture. And that is not communicated to our patients as well as it should be. I think it's one of the reasons why people find it hard to access a higher career as competitive careers because they're not explicitly taught this information. The deaf community in it's. In his desire to be seen as equal on. I think wants to believe that you can replace this information visually. But we know that that's not the case, that people either don't identify it or if they do, they don't process it in real time just by seeing the emotions on someone's face. So I think that we're having a greater insight into understanding that how well someone hears emotion in voice has more to do with quality of life than actually how much the implant benefits their ability to hear the words of speech. So basically, the improvement in quality of life after your cochlear implant is more correlated not with how well you hear the words of speech or how much you improve, but how well you can identify the emotion in people's voices. And that's a big finding. And it's not really harped on or communicated to our patients enough.
Carrie: [00:43:16] Mm hmm. And on that topic, do you think there's ways that as the professionals, we can teach that differently. Or do you think that's just the final limitation of the cochlear implant as we speak today? Maybe it would be different in the future with advancements in technology, but do you think that some of these skills can be taught to help with communication better?
Chad: [00:43:47] I think that some people naturally get this stuff. I mean, we have different personalities and temperaments and they naturally get this. So not everyone is going to have this problem. So I think that's one thing. And two, I can't tell you how we teach this better to our patients. But I can tell you what I do when I'm in a situation. If I'm not sure what the tone I'm hearing is, I will say, tell the person I'm hearing this. Is this what you mean? And when it's a really complex situation, even in quiet and quiet, I will stop listening to the person and just watch their body language and take a second to take it in. And I also explain to people in complex situations that I have a problem hearing tone and. And this also brings in to a second thing that we don't think about the limitations of cochlear implants is that we're talking about getting the information that expressing yourself well, like having the soft skills is really important. So what I actually found is there are some stressful situations in private practice when we're talking about financial issues and accounting issues where, I mean, that is that affects like my pocketbook at the end of the day, you know, like how much I'm able to live on. So that's super stressful sometimes. And I've had to learn to be to be very careful, even even if I'm very upset inside, to not let it come out in my voice, because I've since learned that hearing people hear that very different, where it's like mildly upset to me, like it is like cutting and abrasive to the hearing person. And you laugh, but I mean, like, it's something I've had to learn.
Carrie: [00:45:38] Know. Well, that's a good insight to have about yourself. But you bring up another good point that I had a question about, too, is advocacy and being able to kind of share, you know, with others when you do, you know, need someone to repeat or you want to know their tone or things like that. What advice do you have for individuals about being a better advocate? Because that can be really hard and like you said, a stressful situation or with people you don't know well.
Chad: [00:46:09] I think that on. Advocating for yourself is difficult because even though there's a legal framework around it now, at the end of the day, it's just someone else asking another person for help. And I think going in there with the right frame of mind, that is the initial most important thing. No one owes you anything. I mean, at the end of the day, no one has to provide you anything in terms of like emotional support or. Yes, they will have to do that. I mean, what I mean by that is you can't go Yes, you have the legal rights, but you can't go in expecting someone to drop everything and help you, you know. Other people have lives, too. The second thing is, most people want to help. 95%, 19 times out of 20 people will help you. But you have to be able to make exactly make your need known. Exactly. And tell people how they can help. For example, these are two different science findings and not necessarily correlated. But they struck out to me because if you look at people with hearing loss, women out earn men. And usually there's a 20% difference where men are outearning women by that to $0.20 on the dollar. So in hearing loss, it's reversed. Also, if you look at how people manage hearing loss, women manage it differently. Men will say, I have hearing loss, Women will say, I have hearing loss. I need you to repeat this for me. So telling people exactly what you need is really important because. People can't figure out your problems for you. You have to think about think about it. The other thing that I would do is you don't ask a question unless you know. Sorry, tell me. The other thing is when you frame a request for an accommodation, you ask it in a way that a person cannot say no.
Chad: [00:48:12] For example, if you give someone a remote microphone and they don't want to wear it, they just say, I'll talk louder or something. They may be your boss and you really can't correct them. So one thing you can say is that. I had this example example with a medical student like I was in that situation myself and I didn't know what to say because of the power differential. They had a medical student come up to me and ask the same thing, and I immediately came up with an answer. It's kind of crazy how getting out of that stressful training environment changes things. But I told the student, I said. You tell the on the attending physician like you are a great surgeon and I want to learn everything I can from you so that I can be a great surgeon, too. And if you are if you don't wear this microphone, then I am spending all my time, time working to hear and not working to learn. And those are too. And I can't become the best surgeon if you don't do that. That's what I mean by asking a question in a way that someone can't say no. The other thing is you need to think What? What they may say. No, no to kind of like set your request up so in a manner which answers their questions or cuts off avenues for denial. And then you need to smile and say thank you because people are helping. You know, if you help open a door for someone in a wheelchair, they usually say, thank you. You know, this is the same thing. So. It's work on their part.
Carrie: [00:49:52] Yeah. I like what you said about practicing some of those responses, just kind of anticipating maybe what someone might say and then practice some of those responses so that they are flipped into a positive way and they can't say no. But it takes a lot of practice and.
Chad: [00:50:10] Thought it does.
Carrie: [00:50:11] Courage really to say it.
Chad: [00:50:14] And it's unfortunate because no kid with a hearing loss should have to practice that their audiologist or their doctor should tell them or point them towards resources. Like, here are the most important things you need to know about your hearing loss and how to manage them. But instead, we have kids, adults constantly reinventing the wheel with every new diagnosis of hearing loss in a vocational age person. So it's terrible.
Carrie: [00:50:44] Yeah. Well, maybe we can. We can change to that.
Chad: [00:50:49] Maybe.
Carrie: [00:50:51] So I'm trying to think if I have any other questions. What do you envision for the future of cochlear implants to be like? Do you have any wishes?
Chad: [00:51:20] So I think my vision for the future for cochlear implants or for people with severe and profound hearing loss is more holistic health care where people are given the tools they need to. Thrive with their hearing loss rather than giving tools for maximum speech perception. It's a subtle difference. Not rather than let me back up on. So my vision for cochlear implants or treatment for people with severe and profound hearing loss has to do mostly with a lot of the things we've touched on today, like getting better counseling for patients because what people need are the tools to thrive with hearing loss. And that's going to go beyond what the tools you have for getting maximal speech perception. Those are two different things. And for example, for today, I mean, I would probably trade 10 to 15% of my hearing now to know the things that I know now, but know those when I was a kid. I think the second thing as far as implants go, I mean, we have as a medical device, we have a lot of things on the horizon which are super interesting. I think the nearest one is going to be the application of deep learning, filtration of noise out of a speech signal and where where people will go into a restaurant and they will hear as well as they do in quiet. I think that's going to be amazing.
Chad: [00:53:04] And these. Things are being developed right now. They just can't be put into a teeny, tiny ear level of processor. The most interesting thing as a medical device, I think has to do with light based electrode arrays where we instead of using electricity that is spreads inside the cochlea and stimulates channels next door and degrades information or degrades the sound of an implant. We're probably going to move to light based arrays that stimulate the cochlea with very fine stimulation, and those may it may or may not involve genetic therapies to make certain parts of the cochlea sensitive to different kinds of light. But those are still very early in their development. I don't know where it's going to take us, but I think right now I think the deep learning algorithms will be really important. I think that there are other things where things that may develop as we get into augmented reality and can have computer assisted interpretation of the environment. For example, kids with autism can wear Google glasses that help them identify the emotions on faces, and that teaches them how to communicate a little bit better. So I think some of those things may come for treating hearing loss too, and improving communication skills. So there's a lot of things out there. I don't know what the future is going to look like.
Carrie: [00:54:44] It's exciting to be part of it and to be on the receiving end of some of the excitement to every time something new comes out. I really excited about trying it out and seeing the difference in the real world, which is fun as well. So is there anything I didn't ask you that you wish I would have that you would like to share today?
Chad: [00:55:11] I don't think so.
Carrie: [00:55:13] Anything else that I that our listeners might be like? Dr. Ruffin, with his experience as a cochlear implant user and as a surgeon. Any advice for anyone?
Chad: [00:55:31] I think I would just tell people to be assertive. You're not the first person to go through some of these things. And having having a an illness or a disability that affects communication, both receptive and expressive so profoundly is hard to overcome. But I mean, like people have done it, you know, and the number of people who are achieving great things despite having severe and profound hearing loss, you know, more and more people are doing it. So it's not they're not reinventing the wheel. So I think the I think a key thing is to seek out people who have had an experience similar to yourself and look in advocacy organizations, because I think that will improve quality of life.
Carrie: [00:56:23] Mm hmm. Yeah, I agree that peer to peer connection of others that are in your shoes really motivates you and gives you a lot of insight too. So I'm thankful to know you as well from a hearing care professional point of view and then also as a fellow cochlear implant user. But we can share a lot of great ideas, but I just want to say thank you for being part of the EmpowEAR Audiology podcast today. It was a great conversation.
Chad: [00:56:53] Thank you for having me. I really enjoy your positive energy and enthusiasm and all the work you're doing. I'm super glad you said hi at that meeting at ACIA in May.
Carrie: [00:57:03] Well, and I'm super glad that you said yes to being on the empowEAR Audiology podcast. So listeners, I hope you enjoyed the podcast today and please share it with others. I encourage you to visit the Facebook page and engage as well. Transcripts for this episode are available on the 3C Digital Media Network website and thanks for spending time listening today.
Announcer: [00:57:26] This has been a production of the three C Digital Media Network.
Episode 50: empowEAR Audiology - Dr. Carrie Spangler
Announcer: [00:00:00] Welcome to episode 50 of empowEAR Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome listeners to the empowEAR Audiology podcast. I am going solo today as I am celebrating a milestone episode, The Fabulous 50. In addition to that, I'm also celebrating my birthday. And for the record, not a milestone birthday. This is also the holiday season of gift giving, and I am grateful for the gift of sharing with all of you. And I will talk about in a moment. I am grateful for the gift of hearing. And it's also a time of the year when we're given the opportunity to reflect on what was happening and then the whole year behind us in 2022. Back in January of this year, I bought myself a gratitude journal, which was a simple and powerful way to start the year. And each day it lets you see what is present in your life instead of what isn't. As I reflect back on the purpose of empowEAR Audiology, I am grateful for the grateful is the theme for the 2022 Journey. The lessons and the growth. Looking back on the year, I am grateful for where how your ideology is at and I'm also excited for where and how your ideology is going. As part of the 3C Digital Media Network, whose mission is to connect, collaborate and communicate, empowEAR Audiology has had a successful year living out this mission. I wanted to start this episode with a personal story. It was exactly one year ago when I wrote a blog for hearing Spanglish blog titled Relieved and Grateful.
Carrie: [00:02:05] Journaling the checkpoint for my successful cochlear implant restart. For those of you who don't know, I had experienced electrode migration for my internal device, which resulted in having to be re implanted two years after my initial cochlear implant surgery. I laced up my shoes for the marathon and have had a smooth training year and 2022. Thinking about each Empower Ear Audiology episode, I am reminded of what Rebecca Alexander shares in episode 48. She said Choose to be grateful. Be happy with what you have today and be optimistic about tomorrow. These words hit me personally, as it has been a year in which I am grateful for cochlear implant technology. Well, communication is an important part of my life personally. Communication is a two way street where messages must be both sent and received. It is complex and as humans we are wired to be connected with those around us. In 2019, I realized that oil communication was becoming more and more difficult with the hearing aids that I had. My family and my friends. First language is spoken English. I did not want to lose this connection with them and recognize that I was struggling. I am naturally inquisitive of others, hence why I love interviewing guests and the empowqEAR Audiology podcast. Deciding to venture on the cochlear implant path gave me my natural language back to me. I reconnected with my parents, my husband, my kids, my friends and colleagues.
Carrie: [00:03:59] I was back to being curious and confident, striking up conversations with new acquaintances. I treasure streaming phone calls with my parents on my way to work to find out what they are enjoying that week in retirement. Listening to podcast Am I long drives between school buildings to serve Students who are deaf and hard of hearing was given back to me. Turning up my favorite tunes on the radio or on a streaming device to enlighten my day. When I reflect back on the marathon journey of living with a cochlear implant, I realized the alternative of not pursuing this for my own personal journey would have been depriving myself of the opportunity to continue strengthening the meaningful connections with those I love and those who I will come to know and love in the future. During this time of the year, as we go into the gift giving season, I am grateful for the gift of my cochlear implant, my hearing aid, my assistive hearing technology, my communication strategies. And I am grateful for all of you who support me on this cochlear implant marathon so that I have the opportunity to grow as a human. As I said earlier, this is the 50th episode and I also wanted to hit the grateful button with a year of review of Empower Audiology. Guest And I wanted to thank you all as listeners. Reviewing this past year, I can just say that I am grateful for all of the gaffes that took their time out of their busy lives to be part of an episode.
Carrie: [00:05:44] This podcast would not be possible with without each of you being willing to give up some time and show your talents. I genuinely get excited each and every time I get to have an interview set up and you can visit the website to listen or you can subscribe on Apple, Spotify and Google Play to catch all of the episodes. This may take a few minutes to do a rundown of the 2022 guests, but I hope you are listen as I do a short recap of this amazing year. Grab your phone or a piece of paper and make note of the episode that pique your interest or the ones you must listen to again. So starting back in January with episode 33, we had Dr. Don Goldberg share his journey to becoming an audiologist and the important professional work for the joint committee, an infant hearing and additional professional research projects that he's involved in. Episode 34 Dr. Derek Houston shows about how language impacts children with cochlear implants and a proposed conceptual framework to explain the relationship between language input and outcomes. Episode 35 with Dr. Kim Maher. How to Advocate for Educational Audiology Services When the Service Does Not Exist. And a School District. We had episode 36 with Dr. Christina Blaser talking about the importance of understanding assessment patterns and trends for children who are deaf and hard of hearing when you are the FLP Episode 37 with Lisa Kovacs, a parent, an advocate who works for hands and voices whose motto is powerful, stating What works for your child is what makes the choice, right? She also shares about the different programs that she's involved with in the organization.
Carrie: [00:07:41] Episode 38 Dr. Jessica Sullivan and Dr. Lauren Callender also discuss the impact program, which increases diversity within the fields of speech, language pathology and audiology. And Episode 39, Kayla Gurnard, chief strategy and program officer for AG Association, talks about servant leadership and how each person is a leader with them. In episode 40, Matt Hayes shows his emotional and physical journey of losing and regaining his hearing. He shares how he composed a soundtrack of silence as he was losing his hearing and the journey to getting an auditory brainstem implant. In episode 41, I interviewed Sarah Robinson, who is a speech language pathologist, and she opens up about growing stronger in her acceptance and advocacy as a deaf and hard of hearing individual. And Episode 42, Dr. Jessica LaFleur, my colleague and coworker, shares about her nonprofit Piper's Key and her mission to unlock representation for children who are deaf and hard of hearing. And Episode 43, Dr. Johnny Sexton discusses the Care Project and Educational Audiology Services with a threaded theme of changing the culture of communication.
Carrie: [00:09:06] Episode 44 Lin Wood, who was one of my childhood audiologist. We take a leap back down memory lane, and Lin also shares about her professional career working with children and starting her online resource store. Listen with LAMB. Episode 45 Dr. Yvette Stager is a licensed psychologist working at the University of Miami Institute. She shares about her research and experience working with families, navigating through parental stress and developing self efficacy. Dr. Uma Thurman is a teacher of the deaf and she shares about the opportunity she has had to pay it forward through her work as a professor and through her nonprofit listening. Together, we take a deeper look into the role of the teacher of the deaf in the field. Episode 47 Jody Cutler, mom, activist, entrepreneur, producer, shared the big news that Rally Caps movie was selected to be part of the 31st Heartland Film Festival. The message about accessibility and inclusion is important for the big screen. Episode 48, Rebecca Alexander, who is an author advocate, fitness instructor, psychotherapist, shares her own journey with Usher Syndrome Type three and set the example of choosing to be grateful. Be happy with what you have today and be optimistic about tomorrow. And Episode 49 Dr. Matthew Busch is an ecologist, neuropathologist and professor at the University of Kentucky. In this episode, we have a conversation about how social determinants of health are critical conversations and considerations for improving hearing health care for individuals and families.
Carrie: [00:11:06] I want to say that I don't have a favorite episode because I love them all. I am grateful for all of you, for your storytelling, whether it was personal or professional. I love learning from each of you and digging deeper into topics to empower your others, and I cannot wait to meet more. Guest as we kick off another 25 episodes in 2023 to. Thank. Thanks to all of you for tuning in twice a month to catch the latest episodes. I have heard from many of you over the year and continue to receive positive feedback. It brings me great joy to hear when a college professor shared this podcast with students to listen. It warms my heart to find out that a parent was inspired by another parent sharing their story. And I am encouraged when an adult who is deaf or hard of hearing realizes that there is others out there in those shoes. Listeners keep listening. Please share with others. Engage with me on the empowEAR Audiology Facebook page and please give a five star review. Consider writing a favorable comment. All of these actions help empower others to listen and so that others can also benefit. Listeners, if there is someone that you want to hear from, please reach out and let me know. Grateful. Grateful is the word of the year, and I am grateful to everyone for believing in me. Cheers to year three and 25 more. Thanks again for listening.
Announcer: [00:12:47] This has been a production of the 3C Digital Media Network.
Episode 49: empowEAR Audiology - Dr. Matt Bush
Announcer: [00:00:00] Welcome to episode 49 of Empower Ear Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the Empower Audiology podcast. I'm really excited to introduce our guest today. It is Dr. Matthew Bush and he received his medical degree by Marshall University and in West Virginia, and he completed an Otolaryngology research Fellowship and Neurotology and cranial based surgery fellowship at the Ohio State University Medical Center and Nationwide Children's Hospital Research Institute in Columbus. He is board certified by the American Board of Otolaryngology, both in otolaryngology and in neurotology and cranial based surgery. Dr. Bush is actively engaged in clinical research with a special focus on hearing health care disparities. He has published multiple peer reviewed papers on the topic and is supported by the National Institutes of Health. His research and clinical efforts are focused on providing timely access to care for children and adults. He has received multiple awards for his teaching and research and is involved in multiple national organizations as well. So, Dr. Bush, welcome to the EmpowEAR Audiology Podcast.
Matt: [00:01:28] Thanks, Carrie. It's a pleasure to be with you.
Carrie: [00:01:30] Well, I just wanted to say it was a pleasure to meet you last month when we had an incredible flight experience as we are trying to get to a common meeting in Oklahoma and we got to spend quite a bit of time delayed in the Atlanta airport.
Matt: [00:01:51] Yeah, you know, adversity tends to make lifelong friends. And when you're stranded somewhere or dealing with some of the the craziness that is life as we know it now, whether that's through travel or the pandemic, you know, impacts, we're just thankful to find, you know, birds of a common feather and friends in our in our field. And so, yeah, we by chance were able to huddle together and and sort of make a plan and and move on through the adversity.
Carrie: [00:02:22] Yes. Well, it definitely made our wait and delay a lot more enjoyable than in the airport but thanks for being a part of this today. And I always like to ask my guest to have ventured into our little niche of hearing health care. How did you decide to specialize in ENT and working with children and adults with cochlear implants.
Matt: [00:02:50] Well, I have been very, very fortunate to have just some really immense mentors and really incredible opportunities that led to where I am today and allowing me to be in employed and do my dream job. That's that's that's the thing I would I'm thankful that what I do is not I get paid to do it, but I would do it for free if I if I had to, because it's just that rewarding and honorable to be able to be involved in the life and the care of patients that are entrusting so much to us. But I grew up in West Virginia, the last of four children in a family of four with two parents who were high school sweethearts. They didn't go to college and raised in an environment where we really valued community and connection and family, but education, health care resources, those things weren't necessarily at the front or the foremost of our brains. And thankfully, we were blessed with health in our family. We didn't have any major health problems in our nuclear family, but certainly those influences of rural health and rural health care were a part of things that I saw early in life and was was witness to the influence, kind of the directions that I went in health care.
Matt: [00:04:10] My grandfather was a woodworker, really, a jack of so many trades, as many rural farmers and people who existed and survived through the depression tended to be. But he was a woodworker and would make all kinds of very interesting things. He would make kind of the casing for like grandfather clocks and then find the the components that you would purchase to sort of make people a sort of a makeshift grandfather clock, but just really was somebody that used his hands to do really cool things. So I knew I was headed down a path to use my hands or at least some kind of manual skills. And as health care became an opportunity, then the as I began to think about the different disciplines and had the different mentorship opportunities in health care, it was clear that otolaryngology was a field with so much diversity of the types of patients and the things that we would treat. But I really became fascinated in the in the anatomy, the physiology, the complexity of the auditory system and the ear the ear surgery where fractions of millimeters make a huge difference between hearing or not hearing or a smiling face or a drooping face. So that that type of the stakes and the complexity really very much appealed to me.
Matt: [00:05:35] I think one of the most influential things that sort of made head neck anatomy and the in the ear anatomy come to life was that while I was in medical school, I lived adjacent to the basic science campus portion of the medical school. And in Huntington, West Virginia, I went to Marshall University and the GROSS Anatomy Lab were hiring medical students to work with a head neck anatomy professor to work on dissections that would be used for testing purposes. So different structures would be pinned and used for testing the next class of medical students. So I was basically paid as a medical student to do head and neck dissections and explore head and neck anatomy. It's a bit morbid, I realize, and I don't know, probably some of those old scrubs still smell a little bit like formaldehyde, so it might bear some of the the memories of that that employment. But honestly, that was one of the most impactful things that just let me take a front row seat of all of the amazing anatomy and complexity of the ear, the skull base. And so these formative experiences just sort of really directed me down this very rewarding field.
Carrie: [00:06:53] And that's a great history. It sounds like you said you're growing up in the rural parts of West Virginia and then finding your niche in college really spearheaded you in some of the work that you do right now. And I know you have a heart for humanitarian work, which I want to talk about today, too, but you also have done a considerable amount of time studying health care disparities. And so I'd like to maybe spend a little bit of time talking about your research on health disparities and how that impacts access to health care. Can we start a little bit with? Well, first of all, before we go too much further, I also thought, do you want to share a little bit about what your role is right now at the University of Kentucky?
Matt Bush: [00:07:46] Yeah, sure. So at the University of Kentucky, I am a professor and vice chair for research in the Department of Otolaryngology. It's a program that I have a lot of connections and a history with in that I did my residency here, so I went to medical school at Marshall in Huntington, West Virginia, and then came here for my residency program. And the residency is very different, not larger than it was when I was a resident. Here we have a number of residents and faculty and researchers. So it's a it's a it's a busy growing place. It's been an exciting place to be a part of. I've also had an opportunity to be involved in health care disparity research and health care research related to policy. And so I have I hold an endowed chair that is supported by a foundation for Healthy Kentucky that supports research and scholarly activity to promote health care access, research and policy changes. And so that has been an a career expanding and also opportunity enriching situation to be able to work with colleagues that are in other disciplines, such as in public health or in behavioral science or in other fields to be able to kind of consider where does hearing fit in all of this? Often when we think of health care access or health disparities, we're thinking in terms of some of the the big diseases, the cancer, the diabetes, the obesity, the heart disease, some of those big, bigger items that are affecting millions and billions of people worldwide. But there are so many things that, as we know within the hearing world, that hearing such a such a precious, cherished sense that we all value until it's taken away. So that's the that's the what I do here at UK is involved in kind of not only the clinical side of things, but also in research and then education with residents and medical students.
Carrie Spangler: [00:10:03] Yeah. Wow. You have a lot of hats that you're wearing. And I.
Matt Bush: [00:10:10] Know in.
Carrie Spangler: [00:10:10] The day outside of the university as well, but which kind of leads me to some of your research and maybe taking a deeper dive into how the social determinants of health impact hearing loss. Is there anything that kind of like a story or a patient that was a driver to digging deeper into this?
Matt Bush: [00:10:35] Yeah, You know, any good researcher or any good research project is rooted in real life experiences that I'm a firm believer of that as I mentor medical students and residents, that unless it means something to you personally and professionally, then you might complete the task, but you won't necessarily enjoy it and it won't be really like a springboard to other work or, you know, you kind of creating your own path. So that's an issue that is definitely something that has influenced me, that my work in health care access and health care disparity as it relates to hearing loss is all rooted in experiences that I had not only as a kid growing up in a rural community, but then also attending a medical school that focuses more on rural medicine, and that's the primary recipients of the care. And a lot of the research activities are in rural communities within that portion of West Virginia, but also in my residency where I am now in Lexington, Kentucky, at the University of Kentucky is right at the at a county that is adjacent to a wide region known as Appalachia. And the Appalachian region stretches from Mississippi to New York. And 8% of the US population is in is in Appalachia. About 30, 25 to 30% of the population of Kentucky reside in Appalachia as well. And Appalachian is Appalachia is determined by your county that you're in, and that's determined by the Appalachian Regional Commission, which decides which county is Appalachian or not. And that's not really a voting process. It just is what it is. But this is a region that's had a historical challenges with socioeconomic depression. Access to quality education, health care and health disparities. And poorer overall health care outcomes. And the Kentucky contribution or portion of Appalachia has been one of the most socioeconomically depressed regions of all of Appalachia, but then also of the entire United States.
Matt Bush: [00:12:56] So practicing in this area, I'm privileged to care for patients that live in throughout the region, but also this population coming from Appalachia, where we're seeing these challenges on a real visceral level that are impacting their lives And caring for patients here has impacted me as a father, me as a human being, and me as a physician, but then of course, me as a researcher as well. So as a resident, I, I was really just struck with some of the challenges in some of our pediatric cases. I mean, we had not just once, but on multiple occasions we would have a child who was anywhere from 4 to 5 years of age who would present to our clinic and had basically fallen through the cracks, through so many different safety nets or potential opportunities or appointments, and a child that might have been labeled as autistic or a child who had had so much, so much time, but yet so many little resources, so little resources and so little opportunities to actually receive clarity and diagnostic care, to receive clarity and treatment options and direction of care. And when you see a five year old that doesn't hear and doesn't have any means for communication, that's really impactful. And that really influenced me. And and as I then went off and sowed my wild academic oats and finished fellowship and other training opportunities and came back and that was something I realized that I don't know how I'm going to do it, but I need to figure out some way to define and describe and address some of these children that have fallen through the cracks or some of these patients that have really just lacked resources and opportunities.
Carrie Spangler: [00:15:01] And statistically, I know you mentioned about the statistics for the Appalachia region region, but how how much does that impact those with hearing loss? Do you know?
Matt Bush: [00:15:17] Well, I think that one of the biggest challenges for the whole Appalachian region, as most as much of the region that's from Mississippi up through New York, are rural communities. And so Appalachian might be a certain flavor or flair or regional imprinting of rural communities. But some of the issues that face that that vulnerable populations might face in rural communities are ubiquitous. And that could be whether you're in sub-Saharan Africa, in South America, regardless of where you might be. There are concepts and there's principles that affect individuals where there are health care deserts and limitation in access to any kind of health care provider, let alone a specialist in health care. And I think that's one of the biggest things that I think of when I think of Appalachia is the overwhelming hearing health care provider shortage that is throughout that whole region. That creates a huge blockade for anyone that would try to access hearing health care, whether they had means or the health literacy or not. If there's no providers, it's just going to be more difficult. It's going to be more costly to seek that care out. So that's one of the biggest things is is the the lack of expertise that's within those regions geographically. Mm hmm.
Carrie Spangler: [00:16:49] Yeah. And I think if the World Health Organization, they have five different domains that they kind of look at as far as social determinants of health. And I thought we could take a deeper dive into how this can either positively or negatively impact access to hearing care. And I know you've done a recent study and published an article really kind of diving into this as we look at student or individuals with cochlear implants. But you kind of mentioned that health care access and quality. Does anything else stand out in that area besides the lack of qualified professionals?
Matt Bush: [00:17:32] Well, if you look at each of those domains, you know, it sort of gives you these concepts and these things, these these things outside of the genetics and the actual biologic mechanisms that can influence health, either, like you said, positively or negatively. And so within the domains you can find and could describe the the people, the populations that are either getting the really good health care, really getting the great health care outcomes, getting the great access or have great quality, or you can define those that do not. And that's certainly not something that's just, like I said, isolated to rural communities. There are plenty of populations throughout the entire world whether that would be an urban environment or rural that would face these challenges when it comes to health care, access and quality. We have, I think, begun to describe where there is not access or where there's limited access. I do think we we are challenged a little bit in defining and describing the quality and the quality of of health care, especially as I think about rural communities. There are there may be some hearing health care providers, but perhaps they only see adults. They don't see children. You know, they're not willing to take Medicaid insured patients. So there there can be issues of quality as it relates to certain components of the the population that you're dealing with. And I also think there's a lot of opportunities within that particular domain of interventional work, you know, of I mean, and this is where I'm involved in is interventional work in that area. But I still think that there is much work to be done to consider initiatives and programs, grant funded proposals that would work to address health disparities. And and I think the NIH is doing a lion's share of the work to try to really push and promote researchers to do this. But it's a there's got to be partnerships to be able to think along these lines to address health care, access and quality. It's a it's a multi level aspect to deal with.
Carrie Spangler: [00:20:01] Is there anything that you have found maybe in your area of Kentucky to help move that needle a little bit as far as health care access and quality? And you mentioned grants and programs that to be supported? Is there anything that. You know, I've.
Matt Bush: [00:20:20] Well, you know, I think some of the the basic things are making sure that within our own health care system that, you know, it starts with us. I mean, the solutions aren't isn't someone else's issue and someone else's job that if we're part of the problem, but we're also part of the solution, so we have to work together. So I think that's that to me has been the first start. It's like asking myself as a physician at a major teaching institution, state funded medical school and hospital system, you know, how do we work to improve the quality, the access for our patients that either do know us and have seen us or don't know about us and or has been have been unable to see us. And so thinking about what you do programmatically is, is first and foremost. And I think that that has influence then what we look at in research proposals. So, you know, when I first got started in health disparities, I think I was maybe thinking like a surgeon, like, let's just get get to this. Let's just fix this problem and maybe not like a public health researcher, but, you know, to take a step back and to think, okay, telemedicine could help. But what if there are there's no literally no bandwidth on the other end of the of the screen? And what if the individuals don't have any kind of other tools or means to be able to give us some objective information on auditory function, especially in pediatric diagnostics and pediatric care? It's that much more complicated. So what we've done is realize that if we're going to address this problem, then we've got to make partnerships, partnerships with the community, partnerships with state funded clinics and programs that provide broader public health services than even that we are able to provide to some remote regions.
Matt Bush: [00:22:21] And then through some of those partnerships, develop some research protocols and ideas of, for example, we have a NH funded patient navigator program where we use a parent who has been through the EDHI system and the early hearing detection intervention and uses that parent and embeds that within the EDHI system. And we're studying to see is that effective to take infants who fail a screen or referred on newborn hearing screen and help them achieve a completed diagnostic test in the audiology clinic. And that's not just our clinic that would be in state funded clinics throughout the state. But those things were born out of no shows that that we were seeing within our own practice. And so and then as we talk with with the state partners, how can we then study this to show is this effective? Is it saving financial resources and and work hours in less work or less opportunities lost? Those are things that research can help address and answer. But there's just a really a great need for clinical trials and pragmatic trials that address this. It's we can't just stay in the let's describe the woeful disparity that we have with this population or look at some of the causal factors of why those patients don't come to the audiology clinic or don't get their cochlear implant at 12 months of age and they get it at five years of age. Let's work to develop interventional clinical trials. And that's that's really what I think, that it's important to move forward.
Carrie Spangler: [00:24:06] Mm hmm. Yeah. I like what you said about, you know, it starts with us and asking those questions from our perspective and then being able to implement some different programs and interventions and research and programs to try to help navigate through that. I know there are some other domains that in your research that you've talked about to and how that impacts access to care. One of the things was education access and quality. So do you want to expand on that and that the any kind of correlation between educational level and the access to like let's say, cochlear implants?
Matt Bush: [00:24:49] Yeah, it's a it's a really another very deep swimming pool to to just begin to jump into and to think about and the complexities. It's easiest for us as health care providers to sort of do work in our own sphere. But the educational environment, the educational quality and access is a bit foreign to us in some situations, at least from some research and scholarly activity. So I do think that there is ample evidence in. A an array of literature, including our own, that demonstrate, at least in the pediatric population, that parental education, parental health literacy influences pediatric care in general, but certainly pediatric hearing health care. Parental educational level has been linked to the timing of diagnostic services for infants, but also is connected then therefore to treatment timing. There are differences even in some research. As we looked at participants who have received cochlear implants and looking at parental level of education and there is a correlation between the actual language outcomes from children after cochlear implantation and their parental education level as well. So yeah, that's a that's a big issue. But certainly adult literacy and adult health care literacy and adult educational levels also influence access to care and their willingness to pursue treatment. We know the abysmal numbers as it relates to the penetration and utilization in the market of evidence based treatments such as hearing aids or cochlear implants among adults, and those have just not budged much above 10%. So we're seeing likely in rural communities that the educational level, it's much likely to have a lower penetration or utilization of those treatments in that population. We've we're just in the process of submitting and publishing a paper now where we've evaluated cochlear implant information that's available on searchable websites. And if you do web searches and get cochlear implant information and we're looking for non industry sponsored sources of information initially just to describe the readability.
Matt Bush: [00:27:28] And in general, the AMA recommends that we would not put out health education or health in health education for information or materials that would be beyond a fifth or sixth grade reading level. It needs to be clear and simple. It needs to have a limited number of really long, multiple syllable words, which we're really good at throwing in all kinds of complex wording into our websites and our information because we want to be comprehensive. But the problem is, is that if you look at some of the top websites, again, this is in in under review now, not in press yet, but we'll see if it gets published. But the the evidence is overwhelming that every essentially every website that we've found has a reading level no less than 10th grade. I mean, it's just overwhelming how much that we have written, well beyond the knowledge, the understanding and even the educational level of what would be recommended for public health information. It doesn't mean that we can't describe complicated things. We just have to do a better job of it. And we might look in our academic centers or within our climate control, you know, cochlear implant centers and feel like the problem is that the patients are not getting the education starting in elementary school. They don't have any health literacy and other areas of their life. They're their primary care doctors aren't providing them the resources of educational materials. So we're kind of again, like looking at others is like the problem. And then this this evidence shows like we're not putting out educational materials that are really likely to be understandable by the the larger population.
Carrie Spangler: [00:29:28] Yeah. Which again, you know, we talk about having low numbers overall and then you think about these rural areas and hard to reach people and they're if they happen to look, it would be above a level that they would anybody, you know, a layperson would would comprehend to get the information right.
Matt Bush: [00:29:49] That's right.
Carrie Spangler: [00:29:50] How does the community I mean, how can we maybe look at the community and connectedness in order to get that information for cochlear implants or hearing health care into these areas that don't have a direct access?
Matt Bush: [00:30:10] Mm hmm. Well, communities do play a very key role when when resources are limited and when groups of people are geographically or somewhat socially isolated, they find ways and means to survive. And there's elements of community trust and community sort of a community conscience consciousness of sort of how am I perceived within my community. And that's not unique to rural areas either. But this is a whole another domain that I think we have done little to nothing in at least I'm not aware of, and nor have I personally yet contributed a great amount of effort or output on it. It needs to be done, but we need to really understand that domain, the social and community context of how do people perceive, how do they deal with stigma, how do they deal with helping each other, and how do we work communally and within groups of people to sort of bring the patients to the table and patients having a voice in their care and communities, having a voice in the quality of their care and the access. So that has been investigated in a wide range of of other anthropologic studies and fields, but not necessarily in hearing health care. So I think that's really critical. We're engaged in some research now where we're it's important to us to to study populations and study health systems, again, that are outside of our own. I think, again, like I mentioned, that some of the solutions and some of the ideas innovation will come. It starts internally of how can we help to address the problem or be involved in the solution. But we also know that we do not have the answers.
Matt Bush: [00:32:10] We do not walk in the shoes of those that are in certain communities. So to get into rural communities to as a self labeled rural health care researcher has been critical. So we currently have a funded study through the NIH, supported by the NICD that looks at rural health clinics. And rural health clinics are a unique health care system that has special resources and some opportunities. Some of their billing practices through Medicare and Medicaid have a different process than other private practice or other academic centers, and their charge is to provide care for rural communities. And there's an application process, and they could lose that rural health clinic status if they if their population changes or their practice changes. But that type of a clinic is important for us. It represents kind of an outpost, really a one stop shop for many rural communities and for us to go there and to learn from providers, to learn from patients of what does hearing loss look like in your practice, in your life? What does hearing health care look like? How can we use resources within the community to help address this? And similar to what we've done with the pediatric work, we're interested to see, could patient navigation sort of a leader within the community, a well respected person who could could provide some health literacy on a very layman's term, layman level, but also support self efficacy could could support logistics because they are a part of that community, not because they are they going to get paid for this or they're going to be a part of some long term employment for that practice.
Matt Bush: [00:34:11] But we're looking to see how navigation or how communities can be involved in helping their constituents and their residents get access to some specialty care when it's not necessarily available within that quote unquote comprehensive clinic of primary care clinic environment. So this is how we we're thinking about. We really value communities. We value their input. Another plug that I'll make here regarding communities is that I, I preach the good news that everybody that's doing anything related to hearing health care as a clinician or even as a researcher or both even should be engaged and involved and kind of developing a community advisory board, a community advisory board that's made up of stakeholders, of patients, made up of policymakers, perhaps educators, other members of the community, health care providers as people can come to the table. It gives an opportunity, a voice for those that may not have a voice otherwise. A community advisory board shouldn't be a group of cochlear implant surgeons and cochlear implant audiologists and cochlear implant speech language pathologists or educators. It should involve parents. And so that's the thing, is that we want to know, I mean, how can you use it for your health care is that you would hopefully learn about where we're missing the boat, where we're hitting the target, how we can improve things from just a practical logistics sense. But in research, you're learning about innovative ideas, better ways to recruit, better ways to design interventions that are culturally appropriate. And you can celebrate together that that shared work.
Carrie Spangler: [00:36:07] Yeah, that's a great idea to have lots of different voices at the table to really understand the community. But I love your the ideas that you guys have implemented about the patient navigator and having someone trustworthy within that rural community to be able to share information and hopefully get them, you know, whoever to that next step. Because if they don't have a particular provider or center right there in that rural community, if they can build that trust and maybe they would be more likely to go outside of their community to get the health and care that they need.
Matt Bush: [00:36:46] Yeah, we don't know if it works. And that's that's what we sort of maintain this equipoise, that if we knew that it works, then we'd be fools for doing research. But we should just sort of build it into policy. But we don't know if it works. We don't know if it's cost effective, we don't know if these things are sustainable. But that's the beauty of being involved as a pragmatic, community based researcher is that we get to study this in a formal sense and see does it make a difference? And it makes sense. It's not rocket science. I mean, it kind of we know there's value that is there. We don't just we just don't know exactly how that looks in the long run and how that may influence hearing health care moving forward.
Carrie Spangler: [00:37:32] And know you mentioned earlier that, you know, sometimes we need to look at outside of profession to see what's happening there, too. Do you know of any fields of study that have done a good job with like a patient navigation model?
Matt Bush: [00:37:49] We've totally plagiarized the oncology world for patient navigation. Honestly, that's the roots of patient navigation. And, you know, classically like the cancer survivor who completed their chemotherapy, they rang the bell. They're five years cancer free. Those are the folks that often will come back to oncologists and will say, hey, how can I be involved? And maybe in a philanthropic way when to support a cancer center. But some of them say, Hey, I really want to be in the trenches. I want to be with some of those folks in the same place where I was. And there's there's a whole body of research that has shown how in the oncology field that navigators improve the access to care, they improve the adherence to pursue diagnostic and therapeutic treatment and even outcomes in some disciplines and in some fields of of oncology care. They've shown improved outcomes because if you're completing the things that were prescribed, then it would make sense that they overall might have better outcomes. And and that's really important. We published a systematic review. I think it's. the editor will probably revoke my my article now slip in my brain. But it's, I think, oncology nursing. I've never published anything else, never submitted anything to oncology nursing.
Matt Bush: [00:39:19] But it was it was just an opportunity to submit a public or a systematic review related to an overview of what patient navigation has done for those that come from underserved communities and a demonstration that, you know, time and time again and looking at the literature, systematically shows that approval of access and approval of timing of care. And that's exactly why we did that, because we wanted to say, hey, has this worked in some other field? Could we adapt that for hearing health care? Certainly, hearing health care is very, very different than oncology care and the conversations and the population. But there is complexity that is built into what we do. There is complexity because it is not necessarily every single patient that's facing this. It's not as as perhaps known to some pediatricians of how to manage and navigate through profound congenital sensorineural hearing loss or nuances related to CMV related hearing loss. So those are some things that really can provide value not only to providers but to patients along the way. But we'll see. We'll see what the research shows. That's what we're all about.
Carrie Spangler: [00:40:48] Yeah. And then in your own practice right now, have you found anything that you guys have tried to help close that gap of the social disparities with adults and children who are thinking about cochlear implants or getting cochlear implants that might be useful for listeners.
Matt Bush: [00:41:14] Well, I to tie back in with what I said earlier about doing a little bit of introspective work, I think is is an important part of just human growth and development and just learning from our own mistakes. For me, I, I am like I said, I'm doing my dream job and I just am so thankful to care for a wonderful group of patients and a population that entrusts so much when they walk through our doors. And we need to very much value and demonstrate our trustworthiness. I really I really have valued whenever I have a patient from a county that we don't have any other patients in that county, perhaps that has a cochlear implant. I try to really have a conversation with them about. Not only how they're doing, but how. What was their journey like? I really just as a provider and I don't necessarily look to try to build an extra office time. I mean, sometimes we'll just reach out to them separately because I just want to know. Tell me again about your journey to get here, and then I want to learn and listen to them about how could I know there's got to be other people in your county and your community that are having some similar experiences. How could we help them? And through that there have been I mean, I've I've made visits to small little towns and met up at the library or met up at the local watering hole wherever the the older men are gathered around drinking their coffee on Saturday mornings.
Matt Bush: [00:42:57] But, but find a place in a situation where there can be a conversation. I don't know. Maybe in a sense it's just some kind of old fashioned whistle stop tour. And some people say that's not sustainable, That's doesn't fit into my my life and my world. But the whole concept is is listening to our patients and learning from them. And as a researcher who has spent a lot of time in my career of analyzing and trying to understand qualitative data and research I have, I'm in a phase of my career and in a field of my career where I really have to value the the qualitative information and work to obtain qualitative data that is rigorous, that is deep, that will inform the research questions. But again, qualitative qualitative data is what we do as clinicians all the time. So it's not that foreign from us, but I just work hard to try to create opportunities to to, to learn from and listen to the stories of patients and then physically try to visit those places and work with patients to think about, Hey, how could we help others in your community?
Carrie Spangler: [00:44:18] Those are all great ways to get connected in the community community. And when you think about all of the different factors that influence social determinants of health, there's a lot of moving parts in there that you can't really separate out. And like you said, every patient kind of has their own journey. But if you can get take the time to listen and learn from them, you probably will gain trust of that person. And that person creates a ripple effect to somebody else within the community when they share, you know, hey, this Dr. Bush came and had coffee with me in the local, you know, coffee shop and talk to all of us. And then they gain that trust to maybe go outside of their own community.
Matt Bush: [00:45:01] Yeah. I mean, it's it's amazing the impact that that one individual will have for so many patients. And it doesn't matter how how much I tweet or have Facebook posts or whatever, that population is not going to be influenced by social media. That patient that population is going to be influenced by that one individual who came back from Lexington and either loved or hated that that provider or that health care experience, that process they've gone through. And so that's really important for us to try to work with them. And I have learned lots of things about maybe where we dropped the ball or had not communicated, and we've changed practices in how that we will communicate with certain individuals or how we want to provide educational materials or even the order, the way in which we kind of organize clinic appointments. It's it's just amazing how much logistics of health care that we we might think about, just like whether it's widgets or Amazon prime boxes that might be load on a pallet. We think of health care often that sense. But the patients can really, really inform the logistics of what we do. And again, they're a wealth of information. It's just a matter if we have the time and the willingness to listen to them.
Carrie Spangler: [00:46:26] Mm hmm. Yeah, but obviously it makes a big impact for rural type areas. Is there anything I wanted to ask you about your volunteer work in Kenya as well, but is there anything before we kind of leave this topic of. I kind of rural America and health disparities. That may be practical advice if people want to get started. I think you've provided quite a bit of it, like basically going to the community and building trust and listening to others. And then you said you change some of your logistics and practice as well by listening to individuals, but is there anything that I missed?
Matt Bush: [00:47:12] Well, I think I would leave the topic by just saying that work in this field is not meant to be siloed or meant to be proprietary. And if you care about health equity and all populations getting exactly what they need, exactly when they need it, then you can't remain silent. You know, you can't just sit back and just let the status quo go on regardless if it's disparities or discrimination from race or ethnicity, if it's their geography, whatever that that variable might be that defines some difference in outcome. You need to speak up. You need to connect with others that want to talk about this and innovate and create. And I have been amazed by the number of individuals I've been able to meet and have conversations and learn from. And most often, at least at the onset, they weren't Otolaryngologist. I'm very thankful for a rising tide of really bright, public health savvy otolaryngologist that are asking some big questions and doing some great work to address it. But it's transdisciplinary and just speak up, get connected, reach out to me because I mean, I, I eat, sleep and breathe this stuff. So I, I care about it and I think I would I'd love to chat with anybody who wants to talk about it.
Carrie Spangler: [00:48:42] Now, I am glad you're so passionate about it, because we all know, at least in our in our field, that the the cochlear implant, surgery and technology itself is amazing, but it's only a small part of it. And all of the other factors that influence every human being is really what is going to be a positive or negative in their life.
Matt Bush: [00:49:10] Yeah, you're right. You're exactly right.
Carrie Spangler: [00:49:13] So I know when we met and our layover in Atlanta. You also told me that you have a heart for Kenya and you do quite a lot of volunteer and teaching over there. Can you share a little bit about your humanitarian work?
Matt Bush: [00:49:32] Absolutely. Well, I'm about 10% Kenyan, just culturally, not not ethnically or racially. But honestly, I have been amazingly privileged to have an opportunity to connect with some some friends and colleagues that I've been able to develop in Nairobi, Kenya. So I have I have some family friends who are from Nairobi, and I visited Nairobi when I was just as green as I could be, fresh out of fellowship in my first year in practice, I guess I guess was ten years ago now back in January of 2012. But I came to, through these connections, make a relationship with physicians at the University of Nairobi in Nairobi, Kenya, and they have one of the only ear, nose and throat training programs, one of the few audiology programs in all of East Africa. And so this really represents kind of a a only source of education and some even hearing health care resources and specialty care for a huge population. So there's a number of residents that come from other countries within the East African region to Nairobi to this institution to train. One of the challenges has been in hearing health care with surgeries, the the equipment, the microscopes, the drills where we've got tools to do this work. It's not just a knife and some suture. We need some complex tools to do some complex surgery. And that's been a challenge for a publicly funded health care system and medical schools.
Matt Bush: [00:51:30] So it has been a really exciting ten year journey of bidirectional education and teaching each other, listening to each other, laughing and learning. And our families of those that are the educators and our family, we've just we've just really connected in so many ways. And I usually make two trips a year to Nairobi, where often we're giving lectures, we're giving, we're involved in surgeries. Most of it's chronic ear surgery, but there are also tumors. There are cochlear implants that are done in the area as well. We're working to kind of build a cochlear implant program there in the teaching institution. And we also, you know, eat, you know, eat and drink together and just and just really become friends and colleagues. What we would do at our normal kind of national meetings. And over these ten years, we've had Kenyan residents, students come here to the US and spend time with us. They've stayed in our home. We've had a blast, or my kids know more Swahili than I do, so they learn a lot faster than than old folks like me. But and then actually, I just bought my ticket last week since the pandemic. I went right before the pandemic started. I went in January, in a January 1st of February 2020. But I just bought a ticket to Nairobi for the first week of October, and I'm going to take my 16 year old son.
Matt Bush: [00:53:00] So it's the first time that any of my immediate family has been able to go with me. And nine days is not enough. I'm like, I need to show him ten years worth of people and my family over there that I need to introduce him to. But it's it's just a part of who I am. And, you know, yeah, some of these social determinants of health, some of this health disparities, I mean, those are things that have been commonalities of things we've researched together and done work together. But I mean, I think it's sort of the the work defining me. I think my passions as a person as kind of lead me down a field like this to do work in rural Kentucky, but also in rural Kenya as well. So we have a nonprofit that we started during the pandemic because we had extra free time to sort of I had some colleagues that helped me create it. We don't have a website yet, so we'll get there eventually. But our nonprofit organization is called the Sikaza Society, and Sikaza is the Swahili word for listening. So the Listening Society is the name of our of our group, and it's all about bidirectional communication and learning. From each other and listening to one another.
Carrie Spangler: [00:54:15] Wow, that's great. You had started a whole nonprofit during the pandemic, and so is it based basically educational, kind of nonprofit, or are you doing actual humanitarian volunteer work with patients?
Matt Bush: [00:54:32] Yeah, it would be both. It's both. So it's a little complicated, but we would want to provide educational grants. It's kind of one of the initial motivations to develop the nonprofit is to support trainees here in the US that want to go there and provide care and do humanitarian work, but then also for their faculty, staff, students that would want to come to the US to provide some some travel scholarships. So that's one of our initial objectives and initiatives. Providing educational resources is also another focus and a goal that we'd like to have for a professional community, whether that would be textbooks or other types of resources that they might need, surgical loops, just purchasing things that our residents look for, that they need to be able to advance in their career, in their otolaryngology, but then also to be a source to vet equipment that might be donated. It's it's difficult. There's so much excess of medical equipment that's just sitting in warehouses throughout the the higher income countries that need to be mobilized into low to middle income countries. And that would be also an arm of this nonprofit. But we're we're pretty young, but we want to be intentional and want to be careful and very, very direct in what we do with the with the nonprofit moving forward.
Carrie Spangler: [00:55:59] Wow. Thank you for being an amazing servant leader in our hearing health care field, because without your passion and purpose, a lot of these ideas and initiatives would not be here.
Matt Bush: [00:56:16] Well, it's my it's my joy. That's that's that's really that encompasses it's all about true joy. And that's that's what I feel real true satisfaction to be able to do what I'm able to do.
Carrie Spangler: [00:56:27] Well, thank you for that. Is there anything that I didn't ask you that you want to share before we close up today?
Matt Bush: [00:56:37] I don't think so. I mean, you hit me with social determinants. I never would have thought ten years ago I'll be doing a podcast on social determinants of health. That's. That's not what surgeons do. So thanks for allowing me to be a bit of an imposter of a of a stunt double for a public health researcher. But now I might I might leave you with just saying if if success learns from from what you're doing. Maybe I'll start a podcast, too, and I'll. I might have to call on you to to give a talk to the Sikiza the listening society and let them listen to you.
Carrie Spangler: [00:57:11] Well, I would be honored to be a guest if that ever happens, but I just want to say thank you again, Dr. Bush, for being a part of the Impact Your Audiology podcast. I think everything that you're doing, we need to think outside of just that yourself. And what you do is definitely outside of that, looking at the whole person and thinking about all of those aspects of their lives that we need to think about and help support and move forward in order to close some of the gaps that we have with health disparities, especially in our hearing health care field. So thank you again for being a guest today.
Matt Bush: [00:57:53] Thank you. Well, you're you're part of the solution, too, because you're thinking outside the box with podcasts, with real stories. And so you're you're doing the good work, too. So we're we're thanks to Atlanta and travel delays where we're we're friends for life now We are.
Carrie Spangler: [00:58:10] So you never would have thought a travel delay would bring you to a podcast today. Right. And listeners, if you enjoy this podcast and the empowEAR audiology podcast, I encourage you to give some five stars and pass it along to anybody else that you think would enjoy listening to it. Thank you for listening.
Announcer: [00:58:34] This has been a production of the 3C Digital Media Network.
Episode 48: empowEAR Audiology - Rebecca Alexander
Announcer: [00:00:00] Welcome to episode 48 of empowEar Audiology with Dr. Carrie Spangler.
Carrie: [00:00:15] Welcome to the empowEAR Audiology Podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe, invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the empowEAR Audiology Facebook group. Transcripts for each episode can be found at www dot 3 the number three C Digital Media network dot com under the empowerEAR Podcast tab. Now let's get started with today's episode. Welcome to the empowEAR Audiology podcast. I am really excited today to have a special guest with me and I'm going to read a little about my guest and then I will introduce her. So today I have with me Rebecca Alexander and she is a psychotherapist, an extreme athlete and an activist. She grew up in north Northern California, and she holds two master's degrees from Columbia University. She currently lives in New York City. She is the author of the book Not Fade Away. And she was born with Usher Syndrome Type three. In this book, she shares an incredible story and meditates on what she's lost from the sound of a whisper to seeing a sky full of stars and what she has found with others, a profound sense of gratitude for everything. She has a joy in the simple pleasures of life. So, Rebecca, thank you for being a part of the podcast today.
Rebecca: [00:02:24] Thank you for having me. I'm glad to be here.
Carrie: [00:02:27] Well, I just want to take this opportunity to share the first time I met you. And I don't know, I don't think you really met me, but I saw you at a conference in Massachusetts, and you were the keynote at the Clarke mainstream conference, and you just shared your story. You were so authentic and real, and I was just so grateful to have heard you at that point in time. And I don't know if you remember, but at that conference, there was probably several hundred attendees there, and there was one girl who and her mom, and she raised her hand and she shared with the entire conference that she had recently been diagnosed with Ushers. And I remember you graciously going over to her and you just stood face to face with her and you had this conversation of support and empathy and gave her this big hug. And I thought, wow, I don't think there was a dry eye in the whole audience that day. But at that point I thought, you are truly a person that listens and you make that person, whoever you're with, make them feel like the most important person in the world at the moment. So thank you for who you are, and I'm so excited to have a conversation with you.
Rebecca: [00:03:54] Thank you. Yeah. I mean, that was a really mean. Of course I remember it. I don't think it's something you could forget, but I think sometimes when we're out here and these days with social media and all these different outlets, people lose sight of the fact that we're all human beings, that we have real lives and real stories and real emotions. And so being at that conference, this was before COVID, I believe. So even just being able to be there with someone with a girl and her mom not that long after her diagnosis, I think the emotions were still very raw. And so I really appreciated their standing up and even being willing to share with with me and also the group.
Carrie: [00:04:37] Right. And then I got to reconnect with you just a couple of months ago, and then I officially got to introduce myself to you. And you were a panelist for the American Cochlear Implant Alliance. And that's when I thought, Hey, I'm going to see if she would be willing to be on the podcast today. So thank you for joining.
Rebecca: [00:05:00] Absolutely. I think it was all kind of came in full circle.
Carrie: [00:05:04] It did. It did before COVID and right after COVID, right when we could get back together again.
Rebecca: [00:05:11] Yeah, Yeah.
Carrie: [00:05:13] So I know you have I read your book and I think I laughed, I cried. I could empathize. I had some empathy for parts of the book because I share some of the similar journey as you did. But I thought I would ask you what just prompted you to write this amazing book?
Rebecca: [00:05:35] Yeah. So, you know, it's interesting. There is a definitely a process to it. I mean, some years before I actually wrote it, I was approached by an agent, a literary agent who had seen an article that was written about me for New York magazine, and it was called Going Deaf and Blind in a City of Noise and Lights. And so I think it was a sort of a provocative story about living with the condition that causes progressive deaf blindness and being in a very chaotic, noisy city because I'm in New York City. And so when he first approached me, I thought, what possibly do I have to say that anybody cares to listen to or read about? And what I realized over some time. So I said, I don't really know that that's such a good idea. I think I was 28 when he addressed me and it was about writing a memoir, and I felt I felt like people would think, Really, you're 28 and you think you can write a memoir. But some years later, we there was a story about a spin a thon that we did to raise money for Usher Syndrome research because I was a fitness instructor for many years and he saw the article about me in the New York Times, I think the Style section, and approached me again and said, Now, would you be willing? So I think what was most important about writing this book for me is that in my own process of coming to terms with a condition that causes progressive deaf blindness, I read so many other people's memoirs and people who had very different life experiences than I did, but I always found that there was something in their writing or their experience that resonated with me.
Rebecca: [00:07:19] And to my knowledge, there was nobody that had written a book about living with Usher syndrome in a personal way that wasn't a clinical book. And so it was very cathartic to be able to write this and to sort of speak my truth and to sit down and really put everything into one place. It was definitely a very therapeutic experience, so I am glad that I did it.
Carrie: [00:07:45] Well, I am glad to. And I just wanted to share. When I was reading your book, I made me think of a quote that Brene’ Brown has, and she said, One day you will tell your story of how you overcame what you went through and it will be someone else's survival guide. So when I think when I read your book, I'm like someone else, you know, is going to read that and be able to have that as a survival guide. So all of your courageous remarks and being able to share personally, I think will help others along the way with that. Would you mind sharing a little bit about your childhood events that led up to the diagnosis?
Rebecca: [00:08:27] Yeah. So, you know, everybody has somewhat of a different process of being diagnosed with Usher syndrome. Now, these days, genetic testing can really detect Usher syndrome before there's any physical presentation. But when I was growing up, they didn't yet genetically test for it. And not only that, it was something that for us, we thought that I had some cookie bite of hearing loss because of frequent ear infections. There was just a lot of information and things that were happening that we didn't pick up on. And so it was really kind of like an experiential thing. And by the time I got to the sixth grade, I was having difficulty seeing the blackboard at school and I thought I needed glasses. And my dad took me to the doctor, to an optometrist. His equipment wasn't sophisticated enough to identify what he saw in the back of my eye. So he sent us to an ophthalmologist and we went to several in the Bay Area in California, and they all confirmed that I had retinitis pigmentosa or RP, which is what causes tunnel vision and blindness. And so initially for people who are early in the onset of RP, they experience night blindness and difficulty in certain parts of their vision, whether it's directly below them or in their periphery. And so as a 12 year old, when I was diagnosed with RP, what we thought was just RP at the time, basically I knew that if I went into a movie theater, I had to grab someone's arm.
Rebecca: [00:10:09] I knew that if the dogs were below me that I might trip over them or the dishwasher was open. But at that time I think I heard the word blindness. But for a 12 year old, it's really difficult for you to wrap your head around what that even means. So it wasn't until I was at the University of Michigan, I was a sophomore, and I woke up one morning with really loud ringing tinnitus in my ears and it didn't go away. After a couple of weeks. So I went and was evaluated by an Otolaryngologist and they said, Rebecca, you don't just have RP You have something called Usher syndrome. We've never seen it as it presents itself in you. But because you have both progressive vision and hearing loss, it can't be anything else. So when I was first diagnosed. Usher syndrome. Type three didn't even exist. It hadn't yet even been identified. And it was my own family's bloodwork that we sent to these researchers in Helsinki, Finland. We were the missing link to being able to identify this third type of Usher syndrome. So yeah, I think that a lot of the work and the experiences I had are what have led to a lot more information for families who have been diagnosed with Usher Syndrome Type III. Because when I was growing up, I'm 43 years old, it wasn't that long ago we didn't have any of the information that we do now.
Carrie: [00:11:40] Right. Wow. And then I know you mentioned that you have the hearing loss as well. When did you first notice that you noticed the vision around 12 and then the hearing loss when.
Rebecca: [00:11:55] So, you know, the the the the actual timeline and my memory are a little off. So I'll do my best to try to remember. But my mom is probably still the best one to account for this. But when I was younger, we would watch television and I would always watch out of the side of my left eye. And so we thought it was just kind of a quirk that I would watch TV with my head cocked sideways and nobody really understood why. We just thought it was a funny tic that I had. And what we came to find out over the years is that my left ear was always my stronger ear. And so I created this coping strategy, this compensation, by caulking my left ear forward so that I would be able to hear the TV better. And it took us some time to figure that out. Again, I had some hearing loss with what an audiologist called a cookie bite of hearing loss when I was younger. And so we didn't know that there was any connection between the two. We thought that that was likely why? So I was given hearing aids. Even when I think I was in middle school or high school, I definitely had a hearing aid that I wore in high school in one ear for my AP history class because my teacher mumbled. But I remember the first time I was given hearing aids, which I never wore. I remember putting them in and hearing the fibers of the rug below me and feeling like I was hearing way too much. Like there are things that I didn't want to hear. And I think that there was also this aspect of feeling very self conscious of not wanting to have to wear hearing aids or to have a hearing loss. So it was this gradual period of time where I think Usher syndrome may be between my parents or something had been maybe mentioned, but never really discussed in full until I went to the otolaryngologist at the University of Michigan and I got that official diagnosis.
Carrie: [00:14:02] And after you got that official diagnosis, when did you feel like you recognized the gravity of what they said to you?
Rebecca: [00:14:15] You know, it's interesting because for so many of us, when you get really what is and remember, I'm a psychotherapist, it is a traumatic diagnosis. And it's not something even at 19 that I could really wrap my head around. So I was told that I was going deaf and blind. What does that even look like? I mean, the only person that I knew who was deaf blind was Helen Keller. And that wasn't my life. That wasn't how I was raised. I was raised in a hearing sighted family. And so it happened to be close to it must have been about 20 maybe, but it happened to be around the time that like the year before I before I turned 21. And so in my mind, I thought after I got this diagnosis, if I could make myself as physically perfect and academically perfect as possible, nobody would know that there was anything wrong with me. So I developed somewhat of a maladaptive coping strategy or developed an eating disorder because here I was given this megabyte of information that I couldn't wrap my head around. It was something that was completely out of my control. Not only do I have this, but we've never seen it as it presents itself in you. So we can't tell you what your progression is going to be like. We can't tell you how this is going to play out. But all I know is that I felt very out of control, whether I was able to recognize it or not. And so I created or came up with some superficial way of feeling like I had some sense of control in my life. And that was by being hyper focused on how much I exercised and how much I ate and how much I studied, the things that I felt were really tangible that I could somehow count or measure in some way.
Carrie: [00:16:02] Wow. And did that have a, I don't know, help you decide what you were going to go into at that point in time? Did you know you wanted to be a psychotherapist or did that evolve?
Rebecca: [00:16:19] Yeah, it definitely evolved when when I was diagnosed with RP. at 12, it was around the same time that my parents had recently separated, separated and divorced, and they sent me to see a therapist. Now I saw the therapist. My brothers didn't and I don't. I think I knew that it was I didn't really know why I was going. I certainly didn't want to talk about anything. And so but I think that that exposure likely was good for me. And so I think there have been all of these this confluence of different experiences that I've had over my life that have really kind of led me in the direction of being a psychotherapist. When you have a condition like this, it requires you to do a lot of self reflection. It requires you to go inward in a lot of ways that you might otherwise not have to, and to try to figure out what your identity is and who you are. So, yeah, there's a lot of different reasons why I became a psychotherapist, but also with a condition like this, it's important for me to be in a quiet room with one or two or just a small group of people to be able to focus and hear and follow the conversation so well. So it seemed like a good decision for me also in terms of my long term career goals.
Carrie: [00:17:42] Yeah. And in your book, you. Talked about there was I want to read directly what you said in the book because it was about kind of your emotions and challenges. And you talk about how I don't feel like the cards I've been dealt are unfair. I don't think life is that complicated. And I know that pity is a trap that will deplete my self-esteem and take away time that I don't have to waste. I choose instead to be grateful, to be happy with what I have today and to be optimistic about tomorrow. It's a conscious choice that one has to take effort to do. I feel like this can be really hard to do just day to day to have a conscious choice to to make the most of what you have. What do you do to help with that choice every day?
Rebecca: [00:18:38] So I think that what happens is that we feel like we've learned that we're supposed to be pursuing happiness and success and fulfillment and we don't make room or allow for ourselves to feel the emotions that come with being human, whatever it is that we're dealing with. When people say things like, I don't know why God did this to me, or they have all these different feelings around, or trying to wrap their head around how they ended up with the diagnosis, whatever, whatever it may be. In my case, it's Usher syndrome. And I just don't think at that complicated. It's a genetic disorder that I have. I think that people have a very unrealistic view on what life is supposed to look like. And it's not their fault. It's what we've learned through our society and culture and maybe our parents. But I think that the way that I'm able to be as optimistic or present as I am is that I allow myself to feel my emotions. I allow myself to cry. I have days where I don't feel that great, where I feel sort of down, where I feel less hopeful. But it's not because something has totally gone wrong and all of a sudden I've lost my way. It's that that's a part of being human. And I think that we have a lot of intolerance for being uncomfortable or feeling sad or even feeling some feel some depression. And we actually have to allow ourselves to sit with it, to develop tolerance for it, and to try to understand why we may be feeling the way that we're feeling instead of trying to figure out how to get ourselves out of it, because it's only in trying to get yourself out of it that you perpetuate that cycle of feeling unfulfilled and unhappy.
Carrie: [00:20:25] Yeah, I think you're right. A lot of times people get uncomfortable and then as humans, we just want we don't want to bother someone else with how we feel. And like you said, it probably stops you from accepting some of the things about yourself too, if you don't feel them.
Rebecca: [00:20:43] Yeah. Yeah.
Carrie: [00:20:46] Well, actually. Oh, go ahead.
Rebecca: [00:20:49] Well, I also think that sometimes when we feel uncomfortable because we live in this time and place now where we have so many outlets to not have to be present, you can go on any number of different platforms of social media and distract yourself. And what we have a tendency to do when we feel uncomfortable is maybe we shop or we look at what everybody else is doing that we're not, or maybe we drink or we use substances or we binge on activity. We do anything we can do not have to sit with ourselves and feel. And that, I think, is something that's difficult to develop when you have all of these very easy distractions. So yeah, that's a little bit more of my 2 cents on that issue.
Carrie: [00:21:34] Yeah, that's a good viewpoint though, and I like what you said about making that conscious choice and it does take a lot of effort every single day to make that choice to. Another thing that you said, and it was about you coming home from cane training and you sat in your book, you put fact disabilities require help fact I hate help and that the disabilities weren't going to change so I was going to have to. What does that mean to you?
Rebecca: [00:22:09] Yeah. So, you know, I think one of the hardest things for anybody, whether you have a disability or not, is asking for help. And it's not just asking for help. It's recognizing that you need help. And I think that we are raised to develop a sense of independence, to feel like we can do it on our own. We don't need anybody that we raise our children to become as independent as possible. And yet the most productive and successful communities are communities that rely on interdependence, meaning that we rely on each other to make sure that people are able to get from one place to the next. So we're able to be aware of the things that are going on in our community, that we help each other to be able to live productive lives. And so I think when you have a disability, you feel like a burden. Oftentimes, many people with disabilities, I think this feeling of not wanting to be a burden is pervasive in their lives, and it's important for people with disabilities to also understand that you have a very active and meaningful role in your family and friends lives too, and you need to recognize that. And the other thing is, is that developing the comfort and ability to ask for help is not a way of saying, I can't do it. It's a way of saying, I want to do this, but I need help in achieving this goal. And I think that what we forget is that when you ask someone for help, you're not saying, Will you do this for me? You're engendering in them this feeling for them that they matter and that they're needed. And as humans, I think there is nothing. We want to know more in this life than that we matter and that we're needed. And it's important to think about what you elicit in someone else when you do ask them to help you.
Carrie: [00:24:12] That's great and I do agree. I think people they want to help others. So if you can get past and this is just my perception, too, sometimes it's hard for me to just say, hey, you know, I have I have a hearing loss. So you kind of have that part that you have to get over on your own end of just even sharing and disclosing that information in order to get the help that you need.
Rebecca: [00:24:40] Well, and the interesting thing is, as a psychotherapist, and I think you can appreciate this, is that I sometimes have people come into my office. We're talking about things that they have a lot of shame around or a lot of really deep seated feelings about. And so they speak more softly or they may mumble. They don't want to hear themselves even say these things out loud. And now during the summer, when the air conditioning is on, it's a whole other ballgame of like, you know, I need you not only to speak up, but. So this is it's hard when someone is in this very vulnerable position as someone with a hearing loss, having to say, I know how difficult this is for you to share and I really appreciate your vulnerability. But in order for me to be able to help you, I also need you to speak up. And and so I often will have to say that to people. And more than anything, I don't want them to have to change their tone because I understand how vulnerable they are being in that moment. But if I'm going to be able to help them and really hear them and support them, I can't do that if I didn't hear what they just said.
Carrie: [00:25:51] Which is a great segway into my next question I wanted to ask was in 2013, you got a message that you might qualify for a cochlear implant. What can you share a little bit about that cochlear implant journey?
Rebecca: [00:26:09] Yeah, so I didn't get a message that I might qualify. I got a message that I did qualify. And the reason why I make that distinction is because, again, there was no real trajectory for me of knowing what my hearing loss would be like. And I was very fortunate to be raised with relatively normal hearing so that I could develop speech. But we didn't know. I never thought that I would ever get to a point where my hearing loss would be significant enough that I would need to get a cochlear implant. I went through so many hearing aids, I can't even begin to remember all the different ones that I had. And I got to a point where I had different hearing aids for different environments. And so I think you know very well what that experience is like. But so when I found out that I was a candidate, I'd been tested before, and a lot of my decision to get tested was mostly to have my friends get off my back of like, see, I'm not a candidate. And when I found out I was it turns out that the threshold had been lowered in terms of what insurance would cover. But my right ear, which was always my non-dominant ear, it could pick up environmental sounds, but it could never really discriminate. It was more decorative. I could wear earrings on my right ear, but I never really used it. I never used it for the phone. Nobody ever sat or walked on my right side. So that ear became a candidate. I think I had, let's say, with a hearing aid. I think I had 28% discrimination.
Rebecca: [00:27:45] And without a hearing aid in the sound booth, I had 26% discrimination. So the hearing aid was doing very little to help me. And so a lot of people find out they're a candidate and they mull over it and they think about it and they worry about it. And I wanted to be proactive. I really was able to recognize that my hearing loss and having a microphone that I would use at times in noisy environments was exhausting. And I don't think that we realize how exhausting it is. Sometimes when you live with a hearing loss and you don't do the things that are necessary to help improve the quality of your life. And so it was a huge fear of mine, and I allowed myself to mourn and cry before I had that surgery because it was never a place I ever imagined I would be. But I will tell you that after having the surgery and a lot of listening therapy later, my my life improved dramatically. And it was the best decision I could have made. And so many people wait, I think because they're waiting for stem cell research to happen, for your hair growth, to be able to regenerate hearing. And that's a long ways away. I'm encouraged by all of the research that's out there. But in the meantime, your life is really being affected by not being able to hear. So for me, it was the best decision I could have made. I think about a year later in a sound booth, I was testing between sentences and quiet or noise and words somewhere between like 92 and 98%.
Carrie: [00:29:26] Right?
Rebecca: [00:29:26] And it was dramatic. It was life changing.
Carrie: [00:29:29] I had to go from 28% to 90% in sentences is a big jump. Yeah. Do you remember what it was like when you first got activated?
Rebecca: [00:29:44] Yeah, I have the videos too, but I do. I mean, I knew that it was going to be weird. I'd been prepared. People had told me that it's a process, a journey, and all the things that people tell you, but until you actually experience it firsthand, you can't possibly imagine what it's going to sound like. And I just remember being turned on and I thought that like the tinnitus in my head was like speaking. When someone was speaking, it sounded like this very high pitch. It was confusing. And so but it did it took time. I had 16 electrodes, you know, I got Advanced Bionics and going through each of those electrodes, at first you get turned on slowly but surely. But it was a very bizarre experience. And my first instinct was like, Oh my God, what the heck have I done? And I think someone told me that maybe I would feel that way. But again, until you actually experience it. But from the day that I was activated to the next day, even when I went for my second mapping, I noticed that there was a shift and even improvement how quickly my brain was adapting to this new way of hearing.
Carrie: [00:31:02] I would say the same thing. Right. When I got activated, I was like, What the heck did I just do? I felt like I was hearing beeps and chirps and whistles, and that was about it. And I thought my my hearing aid was like squealing or something, But it was actually the beeps that were I was hearing with the cochlear implant.
Rebecca: [00:31:23] Right. And that was my experience too, because, you know, we hear all the higher frequencies first. And I remember my best friend was there in the room and the audiologist and their voices sounded exactly the same, like there was no difference between her voice and his voice. And the only way I can describe it and it still doesn't do it justice, is I remember it sounded like this.
Rebecca: [00:31:46] Hi, how are you? What are you going to do today?
Rebecca: [00:31:50] It sounded like a word processor. It sounded very high pitched. It was just it was very overwhelming.
Carrie: [00:31:57] And so then you wore both for a while, your hearing aid and a cochlear implant. And how did you feel? Were you able to integrate both the signals together?
Rebecca: [00:32:09] Yeah, I mean, the hearing aid I wore was a different company then, so Advanced Bionics know they're under Sunnova, which is the same umbrella as Phonak. And I had a Phonak hearing aid, but I'd become so accustomed to using this other hearing aid that I think I was able as much as I possibly could, able to integrate the two. But all of the sudden I started relying on my right ear that I'd never done. I think I was 33 or 34 when I'd been implanted in my first ear on my right side, and everyone had always walked on my left side, sat on my left side. They were used to having to be on my left. And so there was this whole, like migration of everyone having to move to my right side and having to switch that up. And so now it's amazing that I ever even forget or lose sight of the fact that this has not always been the case, that my right ear really was not very usable until I was well into my thirties. And so it's pretty remarkable. Yeah.
Carrie: [00:33:18] That your brain can take that information that hasn't really had much benefit and make sense of it. Yeah. And then you ended up getting a second implant too. How did that happen?
Rebecca: [00:33:30] So my left ear was not a candidate and I tested it every year when I went back for my mapping and my annual mapping and testing, and by 2017, my left ear had become a candidate. And it was something that I knew was going to happen at some point. I tried using my left ear with just a hearing aid and not my cochlear implant. I had friends speak to me and with me reading their lips and also covering their mouths. I really wanted to get a sense of where I thought my hearing was, and it was something I think that there was something that felt more final about getting my second cochlear implant because it was like that last bit of hearing, natural hearing that I had. But again, once I got my second cochlear implant, after three months sentences and quiet, I was at 100%. I mean, I didn't wait to get my ear implanted. I know that now the implants or MRI compatible, my implants are not. But if I'd waited for an MRI compatible cochlear implant, I would have not missed out on some very crucial years of my life, both personally and professionally. So I think that it was the best decision I could have made and to have more of that stereo surround sound. And remember, when you're losing your vision, you do need everything else you can have to help you gather information from your environment. So I didn't write.
Carrie: [00:34:59] Well, I guess it's a blessing. And the fact that there's so much research and advancements in hearing technology in order to give more hearing that for individuals that need it. So and then assistive technology and everything else to.
Rebecca: [00:35:19] Yep. Yeah.
Carrie: [00:35:21] And you also mentioned in your book, too, that as a psychotherapist, you have seen some individuals who are deaf and hard of hearing. Do you think those individuals seek you out because of your own personal journey too or how how did they find you?
Rebecca: [00:35:40] Yes, I do think that for any of us, one of the things that's most difficult for people living with Usher syndrome or living with a hearing loss or whatever it is that we face, it's the wanting to go and see a therapist where you don't have to explain all of the nuances of living with hearing loss or vision loss or cancer, whatever your circumstances might be, to be able to have a therapist who either specializes in whatever it is that you're dealing with or who has firsthand personal experience, can be relieving. It can be very meaningful because there are so many things that you don't have to explain. They get it in a way that somebody else wouldn't. And I think that my own frustration when you're a therapist, it means that you yourself ethically have to be in therapy. I've been in therapy for a gazillion years. It's been one of the best things I could have done and have done for myself because it allows me to practice self care and be self reflective and hold myself accountable instead of projecting my feelings onto everybody else. But it's also been frustrating because there have been many times where I feel like I'm paying someone to listen to me, educate them about living with hearing loss or living with vision loss. And so when you can bypass that step by seeing someone who has that specialty, that expertise or the personal experience, there's nothing like it. It almost feels like a sigh of relief because you can get to the real heart of the issues that you're dealing with and not have to deal with all of the psychoeducation around living with a hearing loss or vision loss.
Carrie: [00:37:28] Yeah. And for individuals who don't have hearing or vision loss, it's really hard to put yourself in those shoes.
Rebecca: [00:37:36] Yeah, Yeah. But there are also people who are fully sighted and fully hearing who seek me out because they see that I'm contending with something or living with something that they feel is something they couldn't ever imagine living with, and that maybe there's more information or insight or self awareness that I have just from dealing with something like this that they could learn from. So it's interesting.
Carrie: [00:38:04] That it is. And they're like a story about a significant challenge that you've had. And how did you overcome that? You have so much grit and determination and your book and what you share, but there's something that really sticks out in your mind.
Rebecca: [00:38:23] So it's interesting because we talk so much about overcoming our fears or overcoming certain obstacles. And I really try to bring it back to encouraging people to live with obstacles, to live with adversity instead of always trying to overcome it. There are definitely goals we need to set to overcome our fears, but the fears may never go away. It may the first six or seven, eight times I use my cane, I cried. And again, as I've said, living in New York City, using a blind person's cane and walking down the street doesn't draw that much attention. It doesn't look that unusual, which is fortunate. But there's the practice of needing to be uncomfortable, of needing to be afraid and still do whatever it is that you feel afraid of on even a daily basis or consistently so that it's not just that you're overcoming that fear, you're able to live with it. Because I think that we all feel like we have to set these goals to overcome our challenges and be able to move on to the next, bigger and better thing. And yet there are a lot of things that we may not be able to overcome that we may have to simply live with. So I think for me, the biggest obstacle that I still face is dealing with the inaccessibility of so many different types of technology and programs of having to constantly educate people about the importance of making information accessible and that it's not a privilege. It's a right for people who have hearing loss or vision loss to be able to have access to the same information that other people who are not hearing impaired or hard of hearing or low vision or blind that they don't even have to think about. So I'd say that that is something stands out to me. Climbing a mountain, swimming from Alcatraz to shore. Those are things that I can totally do, and I have the spirit to really challenge myself. But dealing with these things on a day to day basis is the most exhausting. That's what I think is my biggest obstacle that I challenge myself with every day.
Carrie: [00:40:46] Yeah, I love your comment about living with the adversity and instead of overcoming that and yeah, you also have some very humorous stories too. Do you feel like humor plays a positive role in living with adversity?
Rebecca: [00:41:05] So humor, I think, is at the core of our existence. When you live through so many different either traumatic events or heavy circumstances, it is so important for us to have humility and also to have humor because so many of the things that we face in our lives we don't have control over, and we try so hard to have some semblance of control of certainty. And yet life is very unpredictable and very uncertain no matter how hard we try. And if I were to just allow myself to fall into this hole of going going deaf and blind and how heavy this is, there's tremendous humor that comes with it. There's tremendous humor that comes with dealing with a condition that is so uncomfortable and and yet it's also hysterical. And I've shared many stories, but one of which that I can think of off the top of my head is when I was presenting for the Alexander Graham Bell Foundation, they were giving an award to someone and I was presenting the award when they brought me backstage and it was really loud and really dark and they said, You hold here, we'll come get you when it's your time to come out and we'll we'll guide you onto the stage.
Rebecca: [00:42:31] So it's completely dark and I feel that there's someone next to me. And so I didn't want to be rude. I wanted to engage in conversation I couldn't really hear because of how noisy it was. But I think I was just making small talk. Someone came to pick me up and said, okay, it's time to go on stage. And I put my hand on that person's arm and said, It was nice chatting with you. But when I put my hand on that person's arm, I realized that I had been speaking to a statue the entire time. And, you know, if I were to allow that to really bring me down, I can't believe I was talking to the statue like, it's hilarious, right? I was so caught up in the fact that I didn't want to be rude or offensive to someone that I just started talking to who I what I thought was a person. But it was nobody. It was just a statue. And so there's so many things that happen that are. Or humorous and you have to really allow yourself to laugh.
Carrie: [00:43:27] That is a good one. Talking to the statue, they probably said all nice things back to you.
Rebecca: [00:43:32] Right. It was a riveting conversation.
Carrie: [00:43:36] I love it. Yes. I find humor to be something that's important for me, too, because I do a lot of things very similar to that, where I mishear things or, you know, the things and I say something and I and I'm like, I don't think that was the right thing to say back.
Rebecca: [00:43:56] Right, Right.
Carrie: [00:43:58] But you have to laugh or it will eat you up, right?
Rebecca: [00:44:03] Yeah, definitely.
Carrie: [00:44:06] And the other there's one other kind of question that I thought I would ask would be. I think as humans, we naturally want to be in community with other people and it's just kind of part of who we are. And in your book, you share a lot about different significant people in your life, your family, your friends, coworkers. Have you. How has that been with you? How have people been able to influence and support you?
Rebecca: [00:44:38] It's so important for us to have a community, even if it's a small group of people that you rely on to just laugh with or to cry with or to feel like you can really speak openly with. And so for me, I really, really treasure my friendships, my relationships, because these are the people who know me better than anyone. I have people in my life who have known me way before my diagnosis, and I have people who I've only more recently met who have only known me with my disability. And so it runs the gamut in terms of the types of relationships that I've curated. But I think part of what's so important about us having community and having people in our lives is that it helps us maintain perspective. And it's also important for us to remember that what we go through may be very acute and specific to our lives, but everybody has something. And there are plenty of fully able bodied, fully sighted, fully hearing people that I work with in my practice. And you could not pay me $1,000,000 to trade places with them for various reasons. Maybe it's because they don't have a strong support system. But you need to be able to foster that yourself, to develop a support system for yourself and to support other people as well. The people who are in your support system that again, that interdependence is so, so crucial to our existence because. We all want to know that we're not alone. And even if somebody can't relate to what you're going through, they can be there with you. And that, I think, is far more important and it makes it more enjoyable and more interesting to have people to be there along the way with you.
Carrie: [00:46:29] Yeah, definitely. Having that village around you is important.
Rebecca: [00:46:34] Huge. Yeah.
Carrie: [00:46:36] Many of the listeners for this podcast are hearing care professionals, their parents who have children, who may be deaf or hard of hearing, or they're adults who are deaf and hard of hearing, and many may be dealing with a new diagnosis or might not have come to acceptance or I don't want to say acceptance, but you know what I mean. Of their hearing challenges. Do you have any takeaways that you can share with the audience about that kind of coming to acceptance or dealing with whatever adversity you have?
Rebecca: [00:47:14] Yeah. you Know, I think that particularly for parents and caregivers of kids or loved ones who have a hearing loss. Oftentimes we do take on this caregiver role, and it's so important for caregivers to recognize that they have needs, too, and that they need to take care of themselves. People who are caregivers by nature feel a sense of fulfillment by helping other people. But when you do that and you don't take time for yourself or recognize your own needs, we have a tendency to develop resentment towards the people we help, and the resentment that we feel is actually not towards the people we are helping or loved ones is actually towards ourselves for not being able to have either the strength or the wherewithal to say, I need to do something for myself or I need to take care of myself. It sort of becomes self-fulfilling. So I think that for parents and caregivers or loved ones, you need to make sure that you're really addressing your needs to that someone, the person with the hearing loss or whatever the situation is, becomes the identified patient. And that is where codependency lies. And so you really need to take care of yourself.
Rebecca: [00:48:28] For clinicians, I think sometimes you work day in and day out on the same issues of dealing with hearing loss, of doing the hearing tests, of fitting people with hearing aids, and having to deal with all of the growing pains of adapting to your new hearing device and everything. And we lose some of our humanity, understandably, because either were exposed to it all the time and it's something that becomes second nature to us. But you have to remember that when a person comes into your office, being able to hear is very much intrinsically linked with our competence and our ability to feel whole. And so we have to remember that people come into you and they actually are very vulnerable. They may be a difficult patient, they may they may cry, they may have any number of different responses to hearing test or being fine tuned, and you have to try to be present for them and understand that this is a very emotional experience. It's not just a clinical experience of of being tuned up. So I think the humanity and maintaining your ability to have compassion is difficult, but so important.
Carrie: [00:49:46] And there's a great take aways for families and also clinicians who are dealing with or, you know, experiencing this professionally on a daily basis, too. Is there anything, Rebecca, that I didn't ask you that you wanted to share today?
Rebecca: [00:50:03] Well, I would love to hear from your audience. I mean, they can certainly reach out to me on Instagram or Facebook or TikTok or Twitter at reb_alexander I'm sure you will include that.
Carrie: [00:50:19] I will. I will put that in the show notes for you and for us. And they can get connected with you that way, too.
Rebecca: [00:50:26] Yeah, because I think that there's a lot of questions that may come up for people and I'm happy to answer them. But I think that what's most important for people to know is that they're not alone. You know, we all go through this and it can feel very isolating and lonely, particularly when you're dealing with a hearing loss. And it's so important for people to know that they're not alone, that as difficult as it may be, there are other people who really understand and go through what you go through. And it's not to diminish your experience, but it's to let you know that there are a lot of people out there that you can relate to and develop relationships with who will really be able to see you and understand you. And so I think that's important.
Carrie: [00:51:07] I do, too. And your profession as a psychotherapist and you talked about getting help and when needed to is probably another great point for people.
Rebecca: [00:51:18] Yeah, I think that there's a lot of stigma around seeing a therapist or even potentially taking a patient if you need to. And I think it's important for us to try to break down some of that stigma because the stigma that people feel is actually only inhibiting them. And it's it's important, I think, for people to really recognize not what everybody else thinks or what they think other people will think, but what they need, what is in their own best interest in order to take best care of themselves.
Carrie: [00:51:53] Yeah. Well, Rebecca, I want to thank you so much for being open and willing to be a storyteller of your own life, because I am grateful that I had the opportunity to meet you and connect with you a couple of different times, and that we have a common connection of being deaf and actually going on the cochlear implant journey later on in life as well. But you are definitely an inspiration to me and I know you will be an inspiration to all of our listeners as well. I will link up your social media site as well as the book Not Fade Away, because I feel that you share so much in that book that listeners would really appreciate reading it. So thank you again for being a part of today's podcast.
Rebecca: [00:52:39] Thank you for inviting me. I'm glad to be a part of it.
Carrie: [00:52:42] All right, listeners know if you enjoyed the podcast. Please share this with others. I hope that you engage with me on the Facebook page. Transcripts for this episode are also available on the 3C Digital Media Network website, and thanks for spending time listening today.
Announcer: [00:53:00] This has been a production of the 3C Digital Media Network.
Episode 47: empowEAR Audiology - Jodi Cutler
Announcer: [00:00:00] Welcome to episode 47 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Hello, listeners. This podcast is a little different from my other podcasts as it is a remix of the Facebook Live event with Jodi Cutler. This conversation was too good to not put out to all of you. For those of you who do not know Jodi, Jodi is amazing. She is a mother, public speaker, writer and now movie producer. She has an adult son who has a cochlear implant and has been able to use her own personal parenting journey to help many others. In this podcast episode, you are going to hear about the exciting news of Rally Caps book turned to movie. Jodi takes us behind the scenes as Rally Caps was selected for the 31st Heartland International Film Festival in Indiana from October 10th through the 16th, 2022. For me, as an individual who has a cochlear implant and wears a hearing aid, just seeing the movie poster with Lucas, one of the main characters wearing a cochlear implant gives me a sense of excitement and belonging. Representation does matter. Take a listen to this amazing conversation with Jodi Cutler. I think we are going live. Welcome, Jodi Cutler. Thank you for joining me this morning. At least morning for me. And I have my morning coffee with the EmpowEAR Audiology Facebook Live group and this is part of 3C Digital Media Network. I am so excited to have you this morning and afternoon for you.
Jodi: [00:02:05] I'm so excited to see you because I love you and I wanted to talk to you.
Carrie: [00:02:10] I know it's been a while since you were on your baseball spree going across the country to different baseball field, but now you have some even more exciting news, don't you?
Jodi: [00:02:24] I do. I have a lot of exciting news. When I was.
Carrie: [00:02:28] When I was excited to find out more. What? So what? What do you have to share with me this morning?
Jodi: [00:02:37] Okay. First of all, for people who haven't been following the situation, I met Carrie during. Well, first I met Carrie during a zoom for the American Cochlear Implant Alliance. Tuesday talk. And I researched Carrie because she was the person who was a moderator and I, like, fell in love with her and everything that she does. So I stalked I stalker her and. And when we had to go to do the Cleveland Guardians Rally Caps Hearing Loss Awareness Day event, I reached out to her and we were able to collaborate and work together. And she's like, amazing. So I have real love for Carrie, which is why I'm excited to talk to you about Rally Caps, because back when we were in post-production and, you know, we had no idea how we were, how it was going to move forward and how it was going to play out. We were accepted to the Heartland International Film Festival in Indianapolis, Indiana, and it's like, go time, big time. So.
Carrie: [00:03:44] Well, so yeah, so that is so exciting. And just to kind of back up a little bit, Rally Caps is kind of a fusion from a book that you and your dad wrote. Correct?
Jodi: [00:03:55] Yes. My my dad and I worked together to write this book. I have been living in Tuscany for the past 25 years. So I was writing parts of the book in Tuscany and he was editing, modifying, adding parts of the book in West Palm Beach. And there was an exchange. And then finally we were able to finish the book and complete it. My dad had a story to tell about anxiety and getting hit by a baseball bat when he was young. And I had a story to tell because I wanted my son to see himself represented in literature as a child with a cochlear implant who uses listening and spoken language. Because until then I had not found that representation for my son. And I'm obsessed with reading.
Carrie: [00:04:46] Well, and I think it's so important for individuals to be able to see themselves and be represented in literature. And now you have a movie to share as well. So how did you decide that this book needed to become a movie?
Jodi: [00:05:04] My dad has a very determined personality, and from the moment the book was published, he continuously said The book needs to become a movie, and he made it his life ambition and goal to make Rally Caps the book into Rally Caps, the movie. He found Lee Cipolla, who is our multitalented, unbelievable work ethic, phenomenal director who took our book and transformed it into a screenplay, that is. Okay. It's better than the book. I know that you're not supposed to say that, but I love what he did with the screenplay. He's so talented. And. And I was so grateful because he consistently collaborated with my dad and me to. To make sure that we were on board with everything that was being done. I was totally against the idea of making it a movie, because when my dad came to me and said Lee was ready to go, I was like, Dad, it's March. I'm in Italy 2020. We're having a serious lockdown. Covid is happening. Nobody's making a movie right now. And he said, Yeah, we're going to make the movie. And I'm like, okay, Dad. And then and then, you know, your past and time went on and we kept making the screenplay even better and stronger. And then we had I mean, because I was involved, even though I was a little hesitant, my dad will never let me forget that fact.
Jodi: [00:06:35] And that's okay because he's right. I can admit what I'm wrong. And and so we had a table read, and at the table read I met Carson Minniear, who's our superstar. He's so cute and just asked amazing questions and was really talented. I started to see the other actors that were going to be involved in the movie. James Lowe, who plays Coach Ball game. I mean, he plays Coach Ballgame. He is Coach Ballgame. He's phenomenal. Like, I mean, you just melt when you see him and then that's how it started. So we were a small indie film, and then Amy Williams, our producer, was like Lee. I think it's really important to have Judd Hirsch and Amy Smart in this movie because I really believe that they would be exceptional. And so Lee was like, Yeah, that sounds really good. So Amy Williams made that happen, and suddenly our small indie film became. The bigger and more important and the fact that Judd Hirsch and Amy Smart are in the movie, and aside from the fact that they're exceptional professionals and unbelievable actors, their names are going to bring even more awareness to the representation that we are trying to make more visible.
Carrie: [00:08:03] Mm hmm. And you have a couple of characters in the movie who themselves live their life as an individual with cochlear implants or who is deaf and hard of hearing. Can you share a little bit more about those characters?
Jodi: [00:08:19] I will say this. When I found out about my son's profound hearing loss bilaterally sensorineural in Italy, in Italian, and I didn't speak the language. I was a little lost. I mean, I was determined. But but to help him learn to listen and speak. But I was a little lost because I couldn't talk to anybody, really. And in Italy, I didn't have a lot of resources. So the first time I went back to the United States, I went to a bookshop and I was looking through books on hearing loss. And I found Choices in Deafness and in choices and choices in deafness. There was the story of Curtis Pride, and when I read his story, I sat down next to the bookshelf and started crying. So for me, Curtis Pride has always had an important place in my personal journey. At another point in time, my father, who lives in West Palm Beach, near where Curtis lives, heard about a wiffle ball tournament that Curtis was having. And he went to participate because, you know, my mom and my dad were on the other side of the world. And it's you feel helpless to do anything because, you know, so he wanted to to feel like he could contribute and do something.
Jodi: [00:09:39] He went to umpire at this tournament and they became friends. So years later, when we were starting to cast the characters for the my son, who was going to be my my son's character, the child with a cochlear implant. My dad reached out to Curtis, and Curtis has two children, Colton Pride and Noel Pride. Colton, who plays Lucas, has single sided deafness and Noelle has bilateral sensorineural profound hearing loss like my son. So I had always wanted to to cast a deaf character, to play the role of Lucas and. Both me and my dad and everyone was so excited because we were able to have another character with hearing loss with cochlear implants in the film. So we have a boy and a girl and. Additionally, Curtis Pride himself has a cameo and delivers an important message. And for those of you who see the movie, wait till the credits at the end. Don't be getting up and leaving because there's another part that you're going to want to see when the credits roll. And I just the fact that it went full circle with Curtis Pride and and how I live that moment personally was just another Rally Cap's miracle that occurred.
Carrie: [00:11:02] Yeah, that is amazing. That, like, you had that incident in the bookstore where you read about him and then come come full circle and both of his kids that in the Rally Caps movie and they're just so good They're so good.
Jodi: [00:11:19] I know such beautiful people. I mean, they're so sensitive and intelligent and they're just and fun. They're a lot of fun. We had a lot of fun making Rally Caps at camps Gattaca in New York. I'm not going to lie. Like.
Carrie: [00:11:33] Amazing And yeah, so I know. So you got the movie produced and how did Ralley Caps get picked for the The Heartland Movie Festival?
Jodi: [00:11:49] I guess I I'm like Jodie, who raised a child with hearing loss and was a teacher and has helped people in Italy who have their own journeys in deafness. I have had no experience in my entire life with filmmaking, so becoming a producer has been a step by step learning experience. One of our producers, William Garcia, who was working on budget and a lot of the elements, he'd be like shooting acronyms and stuff. And I'd be like, Okay, I need you to explain that. I didn't understand anything. And then Catherine Borda, who is like taking care of all of the details and special effects and color and sound and score that I have no clue about. It's been a learning process. So in terms of the festival, all I know is that we submitted the film and they said, You've been accepted to the official selection. And I'm like, Woo hoo! And Lee and Kathy are like, Oh my God, that's amazing. But they had like. It's 25 days to finish. Finish the movie because we were in post-production.
Carrie: [00:12:58] That is awesome.
Carrie: [00:13:26] So if people want to watch this movie, how are they able to stream it or see it?
Jodi: [00:13:35] Well, we are premiering in Indianapolis on October 8th, and we are premiering in a theater called the Toby Newfields at 5:15 p.m.. If you live near Indianapolis, we're going to have a really good time at our premiere. Like everybody's coming except for Amy and Judd. They are not coming to the premiere, but all the kids are going to be there. We are planning a lot. We're trying to get involved with all of the associations in Indianapolis who I've learned that most of the people responsible within the associations are parents themselves. So there's this huge cohesive unit in Indianapolis that has like been unbelievable for me to work with them. So the Toby you can order ticket for the the premiere the next day. The ninth is another screening in person and that is at the Glendale Glendale 12 at 7 p.m.. You can order both of those tickets through Heartland International Film Festival. And we also have the opportunity to watch the movie virtually. There is a link to be able to reserve, a link to be able to watch it virtually. Those are limited. There is only a certain amount of virtual links. So anybody watching if you want to see the movie. Right now. As far as I know, this is the only chance.
Jodi: [00:15:06] Obviously, our hope is that a streamer distributor will pick the movie up after this festival. But for now, we're taking it step by step. Everyone has been so incredibly supportive. I just if I can, I'd love to give a shout out to Phonak and Advanced Bionics who have partnered with us. Their main goal in partnering with this movie has been to make as many people mainstream aware of. Cochlear implants, what they do for our kids, hearing aids, how hearing technology and devices like the Roger ON. Allow for more accessibility and more inclusion in mainstream lifestyle. And through the movie, we are trying to make sure that all hearing technology is very visible because what we all want to do is smash negative stigma regarding hearing loss. We're tired of our kids having to explain themselves constantly. We want people to look at a hearing aid and a cochlear implant and be like, Oh, they're just like Lucas. Or Oh, they're just like Nicki, So they don't need to go into this explanation about their hearing loss before people are able to know who they are as individuals. And this is what our real goal is for Rally Caps.
Carrie: [00:16:26] And I love the poster too. With you can see Lucas and his cochlear implant and a vibrant blue color. And that is just so amazing to have that representation just even visually. But I can't wait to see the movie as well to have that representation. Thank you. Is there anything else I should ask you or that you want to talk about with the movie as we're live this morning?
Jodi: [00:16:52] I just. I could talk for hours and hours. It's like I just wanted to I kind of want to add something that that I had this conversation a couple of days ago because I'm moving to the United States. A lot of people who are from my forum are coming to visit me to say goodbye, who I've met virtually. And because of COVID, we haven't been able to have our usual Congresses. So everybody can meet in person and people are coming to visit One of the people who came to visit is a woman who had profound was born with profound hearing loss, wore hearing aids for her entire life until she was 50. When she was 50, she decided to get a cochlear implant. And what was really interesting is that she was because a lot of you with the forum, you help them and then they pay it forward and help other people who are nervous about cochlear implants because we're always scared of the unknown. So the more known we make it, the easier it is to make a decision. She was like, Jodi, I have people come to me who are about to get married and they're like, Should I have a cochlear implant before I get married or after I get married? And she goes, Jodi The cochlear implant changed my life. It helped the real me come out of my shell because I, I didn't feel isolated. I felt more secure that I could hear things around me and. I became a new Maria Luisa. Like now I drive places. I go on trips alone. I, I started working. So she goes, make sure you get that cochlear implant before you get married, because the dynamic of your relationship could change when you go from someone who is a little bit more dependent to a person who becomes totally independent and starts making decisions on her own. And I just I thought that that that blew me away. I just thought that I wanted to share that because it happened a couple of days ago and it's still going around in my head.
Carrie: [00:19:00] But. But because of all of your sharing and willingness to share about your own journey and then the Rally Caps and now the movie, it really opens up opportunities for people to have a conversation and like you said, smash stigma and make it something that's mainstream and out there and that these kids are amazing kids no matter what. They just have amazing technology on their heads that helps them listen and talk. And that is kind of, I think, the message that is really positive for Rally. Caps.
Jodi: [00:19:36] And another thing that I've loved since we started sharing is that parents are contacting me and they're asking me how they can have virtual watch parties so that they can get as many people involved as possible. While we have this window of opportunity to see the movie, like one of our actors’ principals where he goes to school, wants to have a huge watch party for the whole school. So, I mean, literally people are taking advantage of this opportunity to try to spread as much awareness as possible in this moment that we have. And my hope is that people love the movie so that it just explodes from here because there's there are so many ways that we can reach an incredible amount of people with this information to spread awareness.
Carrie: [00:20:26] And so I know we have this window of opportunity to watch it right now, But what is your hope after the film festival is over?
Jodi: [00:20:38]When the film Festival is over, I'm going to my new place in West Palm Beach, getting my kids situated and set up. And my hope is that within that period of 15 days, everything explodes and we have an opportunity to to discuss with a distributor, talk to a streamer, to get it to as many people as possible, as quickly as possible and as internationally as possible. Because as you well know, we are a global community. In the past I know the deaf community has been strong, has been visible in the media, has had an incredible voice. What I have realized, and I can attest to is that our community, which is just another shade of hearing loss and deaf, including the listening and spoken language aspects or even bilingual communication. And, you know, there are parents who make choices in deafness to to use sign language and and and to use spoken language. But we have a powerful community that is dying to be represented, and that is not just in the United States, that is internationally. And I'm looking forward to the entire experience.
Carrie: [00:21:57] Well, Jodi, I just want to say you said you loved me at the beginning. And I just want to say that I love you just as much as I love you. I just love everything you do. And you have such an open heart and willing to share. And you are just. And by like, that's all I can say is you are on fire and you are making such a difference.
Jodi: [00:22:20] I need to say one thing to the people who watch you like Carrie is amazing. And there were moments during the Rally, during the Rally Caps, hearing Loss Awareness Day events. And because we did everything in such a short amount of time and I don't know, she must have sensed that I was losing my mind. She would send me these like these affirmations, daily affirmations that were they were so, so kind. And I just there have been so many people who have been present and I so appreciated you just being kind, like, for no reason. And that's what's been happening with Rally Caps. We have been experiencing kindness, generosity, love, miracles. And I just hope that that continues.
Carrie: [00:23:06] And I'm sure it will. So thanks again for joining me and live this morning. I'm hoping that we didn't have too many glitches with the Internet connection. But after this, we will share this with others who weren't able to join us live this morning and put links to the Rally Caps movie in the comments so that if people want to either attend in person or virtually they have the information that they need to do that.
Jodi: [00:23:38] So thank you again. Thank you so much. I love you. Have a great day.
Announcer: [00:23:43] This has been a production of the three C Digital Media Network.
Episode 46: empowEAR Audiology - Dr. Uma Soman
Announcer: [00:00:00] Welcome to episode 46 of Empower Audiology with Dr. Carrie Spangler.
Carrie: [00:00:16] Welcome to the EmpowEAR Audiology podcast, which is part of the 3C Digital Media Network. My name is Dr. Carrie Spangler and I am your host. I am a passionate audiologist with a lifelong journey of living, with hearing challenges in this vibrant hearing world. This podcast is for professionals, parents, individuals with hearing challenges and those who want to be inspired. Thank you for listening and I hope you will subscribe or invite others to listen and leave me a positive review. I also wanted to invite all of you to visit and engage in the conversation and the EmpowEAR Audiology Facebook Group. Transcripts for each episode can be found at www3 the number three C Digital Media Network dot com under the EmpowEAR Audiology Podcast tab. Now let's get started with today's episode.
Announcer: [00:01:22] Hi. I wanted to take a moment to let you guys know about Carrie’'s new webinar. She has created a wonderful new webinar in collaboration with 3C Digital Media Network titled Back to School Optimizing the Learning Environment for Students Who Are Deaf or Hard of Hearing. It is an amazingly informative webinar with many helpful resources. You can go to 3C Digital Media Network dot com courses to access it, and from now until September 16th, we have a back to school promotion for 30% off all webinars. So I encourage you to check it out and take advantage of this offer before it expires. Now back to the episode.
Carrie: [00:02:00] Welcome to the empowEAR Audiology podcast. Thanks for joining us today and I have a special guest with me today and I'm going to give you a little introduction. But my guest, I have Dr. Uma Soman with me today, and she is a teacher of the deaf or hard of hearing and a listening and spoken language specialist, auditory verbal educator. Over the last 20 years, Dr. Soman has worked directly with children, their families and their educational teams in a variety of settings. She has also worked with graduate students and mentored professionals pursuing their listening and spoken language specialist certification. Currently, she serves in two roles the first as a co-founder and director of professional development at Listening Together, a nonprofit organization that advances the education and rehabilitation of children who are deaf and hard of hearing through parent empowerment, professional development and public awareness around the world. The second, as an assistant professor in the Communication Disorders and Deaf Education Department at Fontbonne University in St Louis and both of these roles, Dr. Selman works to prepare teachers, speech language pathologists and audiologists to work with with children who are deaf and hard of hearing and their families in a variety of settings. Dr. Soman has served on several boards, including the Option Schools Board and the AG Bell Academy, for listening and spoken language. So welcome, Dr. Soman.
Uma: [00:03:40] Thank you, Carrie, for that lovely introduction. And please just call me Uma.
Carrie: [00:03:45] I will. But it's so great to have you here. And I was so excited when I had the opportunity to actually meet you in person in May in Washington, D.C., at the cochlear implant conference.
Uma: [00:04:00] Yes. I mean, I have known of you and maybe we've interacted, but we had never met in person. So that was fantastic.
Carrie: [00:04:08] It was. And then I said, How would you like to join me on the empowEAR Audiology podcast? And you graciously said, Yes. So thank you for joining today.
Uma: [00:04:19] Thank you for inviting me.
Carrie: [00:04:21] I always like to ask my guest, how did you get to the point where you're at as far as a teacher of the deaf and just kind of was there something that spurred you into the field?
Uma: [00:04:36] So, you know, as I was preparing the questions. What I wanted to share today on your podcast, the word that kept coming up over and over was this. theme of Opportunity. So I got into this field. Initially by just dumb luck happenstance. My younger sister was diagnosed with bilateral, profound hearing loss many, many years ago. We were living in the Middle East at the time we moved to India. Given the services or lack of services, I should say for a very young child, my mother became a teacher of the deaf. My sister started receiving, listening and spoken language intervention from somebody who was trained by somebody who was trained by somebody by Dan Ling. Right. So this just the opportunity. So I've been going to listening and spoken language interventions since I was eight years old. There happened to be people on my mother's side of the family who are deep in education and teaching. So that path sort of just opened up in front of me and I happen to be decent at it. And I was again opportunity. I had the opportunity to train at one of the best possible programs in India in the field of deaf education. Over there I met a mentor who directed me to the Clarke School for the Deaf Program in Northampton, Massachusetts, for my master's. I got the opportunity to intern at Clarke Jacksonville. I got the opportunity to get a job there. Then through, like a recommendation, an opportunity to work at Vanderbilt, an opportunity to pursue a Ph.D. as a National Leadership Consortium and Sensory Disabilities Fellow. The opportunities have been endless, leading all the way up to what I'm doing today at Listening Together, as well as for fun on university.
Carrie: [00:06:51] Wow. I love how your personal story and experiences really created a lot of opportunities for you, and kuddos to you for taking so many opportunities too, because sometimes people are afraid of change and to take opportunities. And obviously that is not something you're scared of.
Uma: [00:07:14] No. And it takes intentional choosing a yes to something is a no to something else, and it takes hard work. The opportunity is just the beginning. What you do with it is what matters.
Carrie: [00:07:27] Mm hmm. Well, I'm glad you are good at saying your best Yes. And your best No’s along the way, which I have a feeling has a lot to do with your nonprofit organization that you and a colleague had started called Listening Together. I would love to hear more about your mission for Listening Together and what you guys do.
Speaker4: [00:07:54] Sure. So back in late 2016, just as I was finishing my PhD at Vanderbilt University, Ahladhini Rao Dugar and I started working together on this passion project that would eventually evolve into listening together. And we both grew up in India with family members who were deaf or hard of hearing. And we were quite familiar with the disparities in outcomes for children who are deaf and hard of hearing in India and the Indian subcontinent in general. Children and families who have resources and to some extent luck in finding the right professionals do well. And those who either don't have the resources or are aren't in a geographic location that has professionals or are working with professionals who are still running off of old methods. Outdated training have different outcomes. And at that point in our careers, both Ahladhini and I were at a point where we were ready to figure out what was our opportunity to give back, to share what we had learned so we could contribute to the process of making the difference. In no way were we thinking, Oh, we're going to fix this, or we've learned things in the quote unquote West that we are going to bring to India. It was always a what can we do with our knowledge to support what is happening that is relevant, realistic for the populations that we will be in contact with, for the communities of parents and professionals. So this sort of grew from working with one family. And by the middle, early 2018, I want to say Uma Medadidi, another parent, not another parent, a parent of a bilateral implant user, joined us and a team of the three of us formed the Listening Together nonprofit organization. Our mission has always been to support children, families and the professionals who work with them. And eventually we came to this statement of we want to transform lives of children who are deaf and hard of hearing around the world through parent empowerment, professional development and public awareness. We truly envision a world where financial restrictions and geographic constraints don't determine a child's outcomes, and every activity we do is towards this work of transformation.
Carrie: [00:10:41] Now, what a great mission. And the fact that you have lived in India and you've been there, I'm sure gives you so much insight into what you're currently doing, even though you want to make an impact across the world. But it sounds like it started because of everything that you've already experienced personally as a family and then with others who are India, too.
Uma: [00:11:06] Absolutely. And I would say that we don't claim to know what the ground reality is, but at least we feel we know the questions we need to ask because we're not on the ground every day. So partnering with people on the ground, understanding their day to day facilitators and challenges and successes and barriers. And we speak the language. We have a sense of the culture. And that, I would say, is a plus.
Carrie: [00:11:39] For sure. You mentioned that you have some different components of the program as well. So what kind of or types of programs do you offer through listening together?
Uma: [00:11:52] So our primary audience is families of children who are deaf and hard of hearing. As well as the variety of professionals who support these families. Again, notice that I'm not saying we work with children because that's not the focus. We work with families. We empower families and caregivers to support the development of their children, to engage in interprofessional collaboration. So that's one aspect, the parent empowerment piece. We've done it sometimes through individual coaching, but almost always the model has when group parent coaching, developing materials or resources or talks everything virtually. We don't have a brick and mortar anything in the world and connecting families with each other, connecting them with the supports within their communities is part of the Parent Empowerment Program. I mean, it's easy to talk the talk. The parents are the experts on the child and the parents and the leaders of this team. But what does that mean? How do we get parents to be able to do that? Is the focus of the Parent Empowerment Program. The professional development piece, and we actually call it the listening and spoken language professional enrichment program, because almost everyone we work with has a background or degree in a field related to working with children who are deaf and hard of hearing, either as an SLP or audiology or as a teacher. And the goal there, again, is to take the skills they currently have and enrich their knowledge and skills so that not only are they learning the latest evidence based practices, but learning how to implement them. Keeping the family at the center of all of this, always because the models have been the models in India in particular are a little bit different, influenced by culture, social norms of how a parent and professional interacts with the power dynamic is, and so on and so forth.
Uma: [00:14:14] So professional development is about addressing the building capacity within the knowledge, the skills, as well as the attitudes and the dispositions. We really want to see parents and professionals working in collaboration to best support the child. So we have these two sort of separate tracks and then we have the public awareness piece. And that to me is sort of our everybody together kind of track. And under that we released a children's book. We have our free webinars that are open to parents and professionals. To the best of my knowledge, when we first started these webinars, it was one of the maybe the only but definitely one of few platforms where information, the same information was being shared with parents and professionals. So just that bringing everyone together, understanding perspectives, it's not us versus them, but all of us together. Thus the Listening Together together piece matters a lot to us. We offer these programs in English, obviously, but also in several regional languages. So in the past or even now, the webinars are offered in English on one day and Hindi same content in Hindi on the next day. We've done professional development courses where if we have enough for a group of people, then we run the same course into different languages. And anybody is welcome to come to any people are welcome to come to both if that is how they want to participate. Right now I'm trying to model where I teach in English on Saturday and then we have quote unquote office hours on Monday in either Hindi or Marathi. And that's an experiment. I'm curious to see how that goes in ensuring that, again, opportunity people have the opportunity to get this information and develop their skills.
Carrie: [00:16:26] That I get why you say listening together because the parent and professional pieces or family and professional pitches so important to help that child. So talking about opportunities to how do people find out about the different courses or webinars or opportunities that you have?
Uma: [00:16:48] So our social media is our best starting point, but what we have discovered so we'll post on our Facebook page, we'll post on our Instagram page, we'll post on our LinkedIn page. Those are our most active where people will find us. But we also have WhatsApp groups, which WhatsApp is a text app and we have a parent group, we have a professional group and we are finding out that through the sharing of these WhatsApp messages and groups is also another way that people are finding us.
Carrie: [00:17:26] That's the great idea to have that group so people can continue the conversation of the webinar or whatever being shared. Is there anything about all this, about Listening Together that you wanted to share that I didn't ask you about?
Uma: [00:17:44] I think just just from a personal point of view, it's been a. A long time ago, I thought my career was headed in a certain direction and I was going to get my PhD, be a researcher, or be in an administrative role. The whole idea of the nonprofit and the impact it can have and the investment we are making is a big one. So I didn't talk a lot about this, but our financial model is essentially take what you need, give what you can. All services to families are provided for free because again, we don't want financial constraints to be a factor. All services or trainings to professionals have a fee but have generous scholarships because again, we think we are making an investment in this human capital that is going to transform not just the lives of the children they work with, but the the landscape for what is possible for kids who are deaf and hard of hearing. So just that investment and the transformation is an exceptionally exciting part of it. Our priorities for the coming years are increasing access, building capacity and fostering leadership because we know that leaders come in all forms and from all walks of life, and I think that's where the transformation will happen.
Carrie: [00:19:20] Well, thanks for that vision of Listening Together and everything that both of you have put into the nonprofit. Because, like you said, you're building human capital in so many different ways and also influencing the professionals along the way, too. So thank you for that.
Uma: [00:19:39] Thank you.
Carrie: [00:19:40] And I was going to switch gears a little bit with your other role that you have in your life. And I think it's a great topic because we are getting ready to transition into another academic school year, which is hard to believe. And we know that students who are deaf and hard of hearing and whether it's an early intervention or a school age, really require some specialized professionals and support along the way. So I would love to take a deeper dive into your role as a teacher of the deaf and also as a professor, and kind of talk about talk about that. So maybe to get started just for by listeners, can you just share about the role of the teacher of the deaf and hard of hearing and how that might have changed over the over the years, too?
Uma: [00:20:34] Sure. Sure. So. I mean, it should come as no surprise to anyone that children who are deaf and hard of hearing and their educational trajectories and opportunities have changed over the last 20, 30 years. When I started in this field 20 years ago this year, it was. Mainstreaming was a goal, but it was not uncommon for children to start in schools for the deaf and then have the goal of mainstreaming. During my time in this field, we've gone from children, come to schools for the deaf to early intervention, happens in the home, and then there are some children who never come to a specialized program. They just go directly into the general education setting. And even if they're, quote unquote, caught up at three. They still have to keep making progress to keep up with all the language, academic, social demands of what it takes to learn in the school. And it is important that a specialized professional is there to support them, not to say that they will always need help, but to monitor their progress to make sure they're not falling behind. So I think fundamentally the rule, the way it has changed is it used to be that students would come to the teacher.
Uma: [00:22:11] And now the teacher is going to the students. And don't get me wrong, there are still teachers of the deaf in programs like option schools where children are coming to them. But that's a model that has changed over the years. We used to have K through 12 programs for the deaf and now they're shrinking and shrinking and shrinking to the point it's going to be early intervention and early childhood with specialized programs for the deaf designed specifically for children who have additional challenges. So in some ways, a teacher of the deaf and all of these roles still exist. But the way the role is changing is it used to be that the teacher of the deaf was teaching kids to. Speak. And now the teacher of the deaf is still doing that. But hearing technology is also helping them to learn to listen and learn through listening as well as really be a part of the general education sector. So to me it comes down to. How are teachers who are itinerants now supporting children not just survive but thrive in an inclusive setting, facilitating inclusion.
Uma: [00:23:37] If a just say an outside, a general ed teacher would say to you, what if you had to give an elevator speech about a teacher of the deaf? What would you say? How would you explain that?
Carrie: [00:23:53] Yes, what a great question. I should have definitely rehearsed this. And I'm going to make all of my students rehearse this as they prepare for job interviews. Okay. So if I were talking to a general education teacher with my role as a teacher of the deaf is which is different than that of a speech language pathologist and that of a special educator. I would say as a teacher of the deaf, I have specialized knowledge and skills in helping children develop listening and spoken language, particularly within the context of developing, reading, writing and academic skills. I am also someone who can help them develop their self advocacy skills and social skills so that we are on the path to leading productive as independent as possible lives post high school.
Carrie: [00:24:49] Wow. That was a great elevator speech.
Uma: [00:24:52] I'm glad this is being recorded because part of me is like, Oh, I want the script for this.
Carrie: [00:24:59] Now we can just pull that little piece out and then we can have elevator speeches for teachers of the deaf and hard of hearing.
Uma: [00:25:07] Yeah, yeah, yeah. And it is a unique role, which is different than that of a speech language pathologist or a special educator. And I've been very lucky to work on teams where all three of these professions were working together, bringing their unique perspectives to support a child.
Carrie: [00:25:28] Mm hmm. Yeah. And just being in the schools, as well as an audiologist of some districts that we go into. And there possibly would only be one or two kids. And if they haven't had that experience before, they are not questioning, but they want to know exactly what is the role and how do they serve that student so that they can have the build the capacity too.
Uma: [00:25:56] Absolutely. And there is a new position statement by counsel for Exceptional Children's DCDD. I think that's still their name, the department, not department division of Communication Disorders and deafness about the role of the teacher of the deaf and the contribution that they make. So if listeners are interested, check it out.
Carrie: [00:26:20] Definitely. And we can even post that or link that in the show notes to so people can take a look at that. I know you have your role at Fontbonne as a professor too. And so I thought I would ask you, what are some of the requirements and curriculum focus for becoming a teacher of the deaf or hard of hearing?
Uma [00:26:40] Sure. So at Fontbonne and Fontbonne has been doing this for a long time, preparing teachers and SLPs who specialize in working with children for deaf and hard of hearing. We currently have to accept the Office of Special Education Projects funded grants where teachers and speech language pathologists interested in specializing in either working in early intervention or as itinerants receive tuition funding to do this. So let me just plug the grants right there at the top.
Carrie [00:27:16] I'm a huge plug because I'm sure we're going to get into shortages later on, too. So what an opportunity again, opportunity for someone who's interested to gain more knowledge.
Uma: [00:27:29] Absolutely. So depending on the program you're in, either your focus is early intervention or your focus is inclusive settings. So itinerant, itinerant, teaching kinds of situations. But both grants the interdisciplinary preparation of teachers of the Deaf and SLPs to provide early intervention as well as the Fontbonne Northeast Interdisciplinary Preparation Project. Our focused on making sure that people are graduating with skills to work in one of these settings with specialized knowledge and skills. So what do you need in terms of background? A bachelor's degree is important. People coming into the speech language pathology program are often coming in with a bachelor's in communication disorders. People coming into the deaf education program are often coming in with a bachelor's in education or related field. I want to encourage everyone listening to know that you don't need a degree in education or speech language pathology is not required to start this. There are other ways of considering entering the field, but a bachelor's degree would be the first step. We have the grant has allowed scholars to join us remotely. So we have several students this year as well as last year. Who are not local to St.Louis. They live where they work. And they get to participate as they are working as teachers. So that would be the two key aspects of the program and the program focus ranges, right? So you're going to learn about auditory development and language development and literacy development, but you're also going to learn about how to work in interdisciplinary teams, how to engage in collaboration. And I think that is a pretty unique feature of what the Fontbonne program focuses on. The interdisciplinary piece almost all classes are taken with teachers and SLPs in the same room, understanding each other's roles, learning from each other.
Carrie: [00:29:59] And you said this is grant funded, right? Right now. How many? So my first question is, how many years have you guys been able to do this? And then second would be, how many students do you typically accept every year?
Uma: [00:30:14] Okay. Good questions. And how many years have we been able to do this? Fontbonne has a long history of being federally funded. The early intervention grant is on its second iteration. The Fontbonne Northeast Collaborative is also on its second iteration. I mean, knock on wood. But we've had success with receiving grants to support trainees. How many students? The largest class we used to be limited by how many clinic placements, our school field placements we could manage. But if you are remote, as long as we find a good placement for you where you will have supervision and and so on and so forth. We are not limited by numbers as such as we were before. We do have I believe it's we have funding for 32 scholars in each grant. And those numbers might be a little bit off, but I can look them up over the period of four years. So we're not getting 32 people one time and taking them through four years, but like eight, eight and eight or something like that.
Carrie: [00:31:31] Okay. And then when they finish the training requirement, they would then have a master's in deaf education.
Uma: [00:31:40] Yes, yes. Masters of Arts in deaf education or early intervention. And if they're a speech language pathologists, they would have a parallel master's.
Carrie: [00:31:51] Wow, that's great. And we can definitely link information about that as well. So another opportunity to. Absolutely.
Uma: [00:32:01] And anyone listening, if you are thinking, hmm, I wonder if this is for me, just reach out to us. We'll figure it out. We have a student this year from a completely different part of the world who is managing the program well. So if you want to be a teacher of the deaf or a speech language pathologist, we'll figure out a way to help you do that.
Carrie: [00:32:24] Wow. So the speech language pathologist that they would end up with a master's in speech language pathology then, but with the focus on working with deaf and hard of hearing.
Uma [00:32:33] Absolutely.
Carrie: [00:32:34] Hmm. That's always good to know as a specialty professional, too. Well, I wanted to talk a little bit about the shortages. Do you see just from your experiences over your 20 years of being a teacher of the deaf, have you seen the shortages and.