In this inspiring episode, we dive into the remarkable journey of Dustin, who was diagnosed with profound bilateral hearing loss at the young age of five. Despite this life-changing diagnosis, Dustin's story is one of resilience, empowerment, and a determination to spread positivity.
From school hearing exams to facing unexpected challenges, Dustin’s experiences have been both unique and universal. We explore the transformative moment in his life when a simple divider during a hearing test changed everything. No longer able to rely on lip reading, he surprised not only the school nurse but also his entire family.
Join us as Dustin shares how he navigated the challenges of growing up with hearing loss, turning adversity into an opportunity for growth. Through his platform, HearsDustin, he advocates for accessible and inclusive experiences, collaborating with brands and organizations to create a world where everyone, regardless of hearing ability, can thrive.
Please leave us a review and help others find us!
Hosted by Lainie Ishbia and Estela Lugo.
Embrace It is produced by Launchpad 516 Studios.
For sponsorships and media inquiries, drop an email to: embraceit@lp516.com
Subscribe to Embrace It with Lainie and Estela on Apple Podcasts and get notified of new episodes! https://podcasts.apple.com/us/podcast/embrace-it-with-lainie-estela-smashing-disability-stigmas/id1468364898
In this inspiring episode, we dive into the remarkable journey of Dustin, who was diagnosed with profound bilateral hearing loss at the young age of five. Despite this life-changing diagnosis, Dustin's story is one of resilience, empowerment, and a determination to spread positivity.
From school hearing exams to facing unexpected challenges, Dustin’s experiences have been both unique and universal. We explore the transformative moment in his life when a simple divider during a hearing test changed everything. No longer able to rely on lip reading, he surprised not only the school nurse but also his entire family.
Join us as Dustin shares how he navigated the challenges of growing up with hearing loss, turning adversity into an opportunity for growth. Through his platform, HearsDustin, he advocates for accessible and inclusive experiences, collaborating with brands and organizations to create a world where everyone, regardless of hearing ability, can thrive.
Please leave us a review and help others find us!
Hosted by Lainie Ishbia and Estela Lugo.
Embrace It is produced by Launchpad 516 Studios.
For sponsorships and media inquiries, drop an email to: embraceit@lp516.com
Subscribe to Embrace It with Lainie and Estela on Apple Podcasts and get notified of new episodes! https://podcasts.apple.com/us/podcast/embrace-it-with-lainie-estela-smashing-disability-stigmas/id1468364898
Welcome to the Embrace it series, where women with all types of disabilities can be real, resourceful and stylish. With each episode, you'll walk or roll away with everyday tips, life hacks and success stories from community leaders and influencers. So take off your leg braces and stay a while with Lainey and Estella.
Speaker 3:Hi, I'm Lainey and I have CMT. I'm a neuro-muscular disorder affecting approximately 2.6 million people worldwide.
Speaker 2:That's as many as MS. We believe disabilities should never get in the way of looking or feeling good. Both of us wear leg braces and have learned through our own personal journeys to embrace it Brought to you by Launchpad 516 Studios.
Speaker 3:each episode is designed to challenge your own stigmas and beliefs around disability. We want our listeners to get the most value for their time spent with us, so we interview some of the most empowering disability badasses in the world. Through storytelling, personal experiences and tips, we're all reminded of our own strengths and endless potential.
Speaker 2:For more information and exclusive resources, check out our websites at trend-ablecom and hnf-curorg, and don't forget to hit the subscribe button for future episodes and special promos. Hi, hi there, dustin, nice to meet you again.
Speaker 4:I know you too so excited to be here. It was so good to meet you both at the Runway of Dreams. Just an incredible event.
Speaker 2:Yeah, it truly was. And for those of you guys who are listening who have no clue what we're talking about, reach out to Estella and I and we'll send you the awesome video that shows Dustin modeling, which we're going to get into in a bit, but I'll let Estella introduce you. You guys, if you're truly a handsome dude too, we have to really put a lot of his photos up. Might get a lot of new listeners. What are they doing? Got the Embrace it podcast? I appreciate it. Is it my eyes?
Speaker 4:Is it my scruffy beard?
Speaker 2:I'm married. You're way too young for me and you're newly married, so congratulations. I heard Thank you.
Speaker 4:Yes, we are very happy, so I appreciate it.
Speaker 3:A Breeze to newlywed a model, a deaf motivational speaker and inclusivity and accessibility advocate. So maybe we can start with how you entered the disability community, what that kind of diagnosis journey was for you and your family. How did little Dustin grow into this powerful disability advocate that we have with us today?
Speaker 4:Thank you. Well, it was around the age of five where preschool, kindergarten, right we had those school nurse hearing exams and one year I passed, no problem. The second year they put a board up in between all the students and the nurse and I realized in line, oh, I'm not going to be able to lip read. But I didn't really realize I was lip reading until this moment. I naturally did what I had to do to succeed and communicate and hearing loss wasn't in my family, so I didn't even know I was deaf.
Speaker 4:And when I went up to the table and I realized very quickly I couldn't hear any of the words the nurse was saying you know, ice cream, baseball outside, all these words that they would say and repeat after me I failed. And then when they went to press the button and you're supposed to raise your hand, what I did the previous year is I saw them move their arm when they pressed the button Clever. So now I don't have any of those advantages and showing off. They called my mom and they said I think your son is deaf and she said what Unintended right she. No one in my family knew.
Speaker 2:If we can pause for just a minute, I want to fully comprehend this. So you basically assimilated into your environment and picked up everything that was needed to. Even your parents didn't know that you had hearing loss and like at all. You didn't know how to articulate that, you didn't care to articulate that, you just did what you'd always done. Is that? What is that what I'm hearing? That's correct.
Speaker 4:Yeah, yeah, that's incredible. And nowadays especially, I always give a lot of credit back to my grandfather, who helped raise my brother and I with my parents for working, and you know my grandparents were always there for us. My grandfather was a double amputee. So when he was in his mid twenties he got in a boating accident and he had a hook and a wooden leg and so he normalized. What a disability, what a handicap in my eyes really was. So when I started losing my hearing because it was a gradual loss over the course of from five to about 13 years old, I kept losing my hearing and it finally stabilized in the profound level, which is the most significant loss you can have. And I just you know I was supported by my family that to me it was just a hearing aid that helped me hear, just like glasses help you see. And I used this new technology. I thought it was cool. My friends thought it was cool because I said it was cool.
Speaker 3:Oh yes, Trendsetter.
Speaker 4:Yeah, so and that was it. You know, I just always did what I had to do to succeed. I had a teacher of the deaf. You know that was my note taker. She helped me with assignments and studying for exams and things like that. I had different types of accommodations in school and academically.
Speaker 3:So can I ask what is the cause of your deafness? Were they able to diagnose the reason behind it? Was it genetic?
Speaker 4:It's still a theory where we think it's from chickenpox. So a virus, a virus, right. And I had a very severe case around my my face and my ears and over time I would just keep losing my hearing and then I just started losing more and more and more and I think it was just a delay effect and my mother always said with the doctor and then they came to an agreement about it, but it's never been really proven. I know there are some studies now that bio genetic testing to better understand the cause. So we're looking into finally figuring it out, hopefully soon.
Speaker 2:I'm just so curious. So we've had people on who were blind and they cleared up stereotypes or assumptions that someone literally can't see a thing Like. So some of the people we've had on the woman from bold beauty I'm forgetting her name as an example she was like no, it's not, like it's totally dark for me, I see some shadows. When you say is it the same thing apply with deafness, where you like don't hear anything or things are muzzled, or is it defined as? I don't know what is deaf, defined as?
Speaker 4:So without my hearing aids? I have a. Well, I have a high pitch frequency hearing loss in the profound level. So what that means is without my hearing aids, which what they do is they amplify sounds. Right, they don't necessarily help with speech clarity, so it's still difficult to hear what people are saying without reading lips. But without them I don't hear any high pitches. So, bells, whistles, alarms, birds chirping, a lot of babies crying, whining, sometimes women's voices that are higher pitched, that alarm today, the national emergency test, that was so loud to me. I was in the middle of a zoom call with another client and I didn't know where this. I knew it was coming at some point today. I forgot about it and I was in a hotel lobby. So there was some noise over there and I was like what is happening? Is that me or you? And sure enough it was from my phone and my phone was face down so I didn't see the alert. But those types of noises I don't hear at all without the hearing aids on. When they're on, they're amplified.
Speaker 3:So it's more of a. It's a spectrum, right, because, like Lainey said, it's not that you cannot hear anything, it's a certain profile of sound that you're not able to process. So I think clarifying that scale of disability is always important for us to kind of dive into. Going back to young Dustin, right, you were fitted with the hearing aids. How did you obviously seem like a very happy kid and adaptive. What were some of those kind of challenges that you had to navigate as a young child, socially, into your teenage years, into adulthood, dating, all of that fun stuff.
Speaker 4:It's a great question and topic. Well, first, I give a lot of credit to my mom who drove me back and forth, back and forth to the audiologist to make changes in the settings every week and each time I went I was hearing new noises and it was too loud. There was a lot of stimulation. So we made a lot of changes that took some time to get used to. Academically and socially, I was lucky. I had an older brother who kind of set the tone for me, and in school everybody knew our family and the reputation we had, that we were good people and my brother was a class president. So growing up over the years he had a great reputation and we were both athletes. So on and off the basketball court, the soccer field, people knew who we were. We were hard workers and that helped a ton too.
Speaker 4:In regards to my dating life, right, I was a late bloomer, Not because of my hearing loss as much, but maybe confidence. I didn't know how to really show the confidence that I had because I don't know that people understood how difficult life can be with a disability. And when you look at me, especially over the screen, you don't even see my hearing aids. You don't know that I'm lip reading intentionally, you don't know that I have captions on and you don't know that my hearing aids have Bluetooth, and that's what makes this experience accessible for me. But it's an invisible disability that I have to explain that to people, and when I do, wow, that's impressive right. So I don't think I really fully explained how much I overcame to get me to the point I am today, at a younger age.
Speaker 3:Were there times where you had to really learn how to advocate for yourself in those situations where maybe you were being discriminated against or left out, and what were some of those situations like?
Speaker 4:I remember being at a family event at a Balmitzva and I was about seven or eight, so a couple of years new into being deaf and all the 13 year old boys were all at the kid tables and they started pointing at my hearing aids and calling me Balunias and I didn't hear it. It was when my brother told me and I immediately just started crying and they got a good kick out of it. But back in those days my hearing aids were big right, they were large, covered the whole ear. Now they're pretty sleek and modern and cool technology. But back then it took some time to get used to and every once in a blue moon I would quote be made fun of. But I always set the tone where these are just cool pieces of technology that helped me hear, like Glasses, lpc, and I can still count on two hands how many times I was ever made fun of.
Speaker 3:But I love what you said about your parents being very proactive in making sure that they were always kind of like through the process of trial and error. There's my New York accent coming out Fine tuning your hearing aids, and I think that that can be applied to all types of mobility aids and devices, that it's not a one size fits all. I mean with Leany and I as far as braces and just in that category alone, just the trial and error and testing out what works, what doesn't work, can be exhausting. But I think it's important not to give up and to always be advocating for what feels good, what works good, what doesn't work good. But I wanted to shift things a little bit back to the deaf community. Can you share a little bit about how really large this demographic of people is? And also I'd love to talk about ASL and the differences in the ASL community within the deaf community, cause I know there's a lot of nuance there as well.
Speaker 4:So there's 50 million Americans that are deaf or hard of hearing, and that's a huge population. That's about 14% of the country that is deaf or hard of hearing affected by hearing loss. In the world, there's 432 million people that are affected by hearing loss. That's even more of a percentage of the world. So it's growing by 2050. That number is gonna go up to 700 million.
Speaker 4:So now is the time to really which is what we're doing bring awareness and find more and more solutions for people that are affected by hearing loss. And there's another percentage of people that don't actually get the help they need. Whether it's hearing aids, a cochlear implant, any sort of solution, whether it's assistive technology or not, they're not getting the help they need, whether it's because of finances, confidence, you name it. So now is really the time to encourage people to join this community. We're the most resilient community we anybody's ever met. That goes for a whole the disability community.
Speaker 4:I'll be the first to talk about mental health. Not easy, and life is not easy To have a disability on top of that. Right, you know we've all accomplished so much, so it's really something to be proud of. You should have one of us and all the listeners today you can think of your own personal stories. You know it's challenging, but here we are today and we're going to tomorrow and the next day. So you know it's all about being positive and carrying that energy. But you know, as far as the deaf community capital, d deaf versus lowercase D deaf right.
Speaker 2:What does that mean? Capital D lower D.
Speaker 4:The capital D deaf is really deaf culture, right, they rely mainly on ASL. It's really their own community of people that communicate with sign language. Out of that 48 million, it's a much smaller percentage of people that strictly utilize sign language. Now, I've always been a verbal communicator. My whole family, my friends, everybody has always, you know, been hearing and.
Speaker 4:But I also went to summer school for the deaf many years as a kid and I was acclimated I guess the word would be with people that relied on sign language and that was a different community than what I was used to, because I went to mainstream school and it was during the summer and I realized not only did I want to play basketball every day during the summer, but I felt like it wasn't the community I really associated myself with as much. So I one year I said to my mom hey, like you know, I don't think this is my community, if you will. And she said, ok, no problem, just wanted you to know that they are a community that's out there and there for you at any point in your life. And that was a very powerful kind of moment with my mom where she just understood me and she knew I wanted to play basketball and she knew that I was surrounded by.
Speaker 3:You know the hearing world, so I can imagine, to that, not knowing the reason behind your deafness, there was probably always this fear of it progressing, and so that, by you know, exposing you to that experience of summer camp and to ASL, it was kind of just like you know if it, if there's a point in your life where you have to rely on ASL in order to communicate that that introduction was made as early as possible to give you that confidence and that sense of community.
Speaker 4:And later on in life. So in college I took her class an old girlfriend at the time. She was a speech pathology major and I decided I'll take a fourth class, even though I didn't need to. But let it be known, I got an A and she got a B plus. But you know it was fun and I really got to learn. And of course, like any language, if you don't practice every day you lose a lot of it. But lately, as you saw, at the runway of dreams I met some people that were deaf and signing and it comes back to you pretty quickly. But if it's not something you practice and use every day, you certainly forget a lot.
Speaker 3:I've been, I've been seeing just in more mainstream media and more obviously with the representation of the deaf community and disability at large. I love a show called New Amsterdam and on that show there's a surgeon who's completely deaf and mute and she signs to do, you know, the surgery and she's just another incredible character on the show. But I'm, it really is. For me, as somebody with a disability is normalizing it even more and it's so exciting to see movies like Koda and all of these real, authentic representations of the deaf community in our culture now.
Speaker 4:And we need more of that right, there's under 5% of actors and actresses showing a disability and a lot of that percentage is actually played by people without a disability. So the authentic representation is so important, especially for kids that have disabilities. You know, I want children to look up to me you all of us that actually have the same disability and they show that it's an ability that we can be actors and actresses, we can be comedians, we can be whatever we want.
Speaker 2:So I'm going to have a question that may not be politically correct, but when am I? I don't even know if that's a term anymore, but it doesn't matter. I'm just so curious. Like your speaking voice, oh, like it's sound, you could be like someone wouldn't know that you are deaf from your voice. You know necessarily. Whereas, when we talk about what's your name in that movie, you just mentioned Koda, the show. Well, anybody like a lot of.
Speaker 2:Yeah, like you know, you notice some people's voices and is that because, like, well, let me ask you for you. Is it because it's such a young age? You accommodated and modeled and used your voice and didn't stop? Is it because people have been signing and that's what they're used to and they never used it? Like, why, how, why is the voice impacted with?
Speaker 4:hearing. It's a combination of things, and part of my accommodations that my mother advocated for was speech therapy, and so at a young age although again at recess, I wanted to play basketball they called me in at the end of recess every day, or however many three days of the week, to do speech therapy. As much as I did not love it, I did what I had to do and thankfully the therapist was so nice, Mrs Murphy, and you know I did, I did great and I got candy at the end. The other kids didn't get candy, you know, but I made sure that I gave it a good effort. And my teacher of the deaf was also Mrs Burke, but we still keep in touch.
Speaker 4:She was the speech police, so if I got lazy she would say what was that? You know? Say that again, and then I would enunciate a little bit more, right? So I was always, you know, making sure that I gave the appropriate effort. Also, I had hearing before I lost it, so that definitely helped to hear the sounds, the way that they have been spoken. The people that are deaf, they might not hear those sounds as clearly as some of us do, and they're not. Maybe if they're mute they don't speak as much as because they're communicating via sign.
Speaker 4:they don't know what it really sounds like, and maybe we don't hear our voices the same way that a hearing person hears their voices. So there's a lot that goes into it.
Speaker 2:Yeah, and I was thinking that too I'm like, oh my God, every time I Estella's like, did you listen to our podcast? Like this podcast, I'm like I don't want to hear my voice ever because it sounds when, you know, for people most people their voice sounds so different when they hear their own voice from what they think it sounds like right, like it's so not what I want it to be, so I don't want to hear it. But obviously you don't want to take that for granted, right? But I would imagine that part of it, too, is practice, and if you don't use it, like with climbing stairs, if you're able to, if you stop doing it, you lose the ability to do it. So the more you do something, the better you get at it, right?
Speaker 3:That's what I was going to compare it to. Like your speech therapy was like my PT in school, like I hated being pulled out to do it and it was boring and it was annoying but I'm glad you know and that's those things that we need to make sure that we are preparing ourselves and the self-care element of disability.
Speaker 1:We'll be right back.
Speaker 6:This is George Fred and Jason, the co-leaders of Speak, interrupting to say that we hope you're enjoying this episode, but please make sure to check out our new show, the Speak Podcast, another great show produced by Launchpad 516 Studios. New episodes available every week on all of your favorite podcast platforms.
Speaker 5:Each Speak Talk is about six to 10 minutes in length, and the talks are given in storytelling format. There are three key moments in each Speak Talk the moment of truth, the moment of transformation and the moment of impact. We host pop-up events all over the world, and now we're bringing our talks to your device.
Speaker 6:Join us on the Speak Podcast as our speakers step onto the stage and into the spotlight with impactful ideas and stories.
Speaker 1:We'll let you get back to the show you were listening to another great podcast from Launchpad 516 Studios.
Speaker 3:You're tuning in to embrace it with Laini Anastella, brought to you by Launchpad 516 Studios.
Speaker 2:Hi, hi there, Dustin, nice to meet you again.
Speaker 4:I know you too so excited to be here. It was so good to meet you both at the Runway of Dreams. Just an incredible event.
Speaker 2:Yeah, it truly was. And for those of you guys who are listening who have no clue what we're talking about, reach out to Estella and I and we'll send you the awesome video that shows Dustin modeling, which we're gonna get into in a bit, but I'll let Estella introduce you. You guys, it's truly a handsome dude too. We have to really put a lot of his photos up. Might get a lot of new listeners. What are they doing? Got the Embrace it podcast.
Speaker 4:I appreciate it. Is it my eyes? Is it my scruffy beard?
Speaker 2:I'm married. You're way too young for me and you're newly married, so congratulations. I heard Thank you.
Speaker 4:yes, we're very happy, so I appreciate it.
Speaker 3:A Brixton, newlywed a model, a deaf motivational speaker and inclusive and accessibility advocate. So maybe we can start with how you entered the disability community, what that kind of diagnosis journey was for you and your family. How did little Dustin grow into this powerful disability advocate that we have with us today?
Speaker 4:Thank you. Well, it was around the age of five where preschool, kindergarten, right we had those school nurse hearing exams and one year I passed, no problem. The second year they put a board up in between all the students and the nurse and I realized in line, oh, I'm not gonna be able to lip read. But I didn't really realize I was lip reading until this moment. I naturally did what I had to do to succeed and communicate, and hearing loss wasn't in my family, so I didn't even know I was deaf. And when I went up to the table and I realized very quickly I couldn't hear any of the words the nurse was saying you know, ice cream, baseball outside all these words that they would say and repeat after me I failed. And then, when they went to press the button and you're supposed to raise your hand, what I did the previous year is I saw them move their arm when they pressed the button.
Speaker 3:Clever.
Speaker 4:So now I don't have any of those advantages and showing off. They called my mom and they said I think your son is deaf. And she said what Unintended right she? No one in my family knew.
Speaker 2:If we can pause for just a minute, I wanna fully comprehend this. So you basically assimilated into your environment and picked up everything that was needed to. Even your parents didn't know that you had hearing loss and like at all. You didn't know how to articulate that. You didn't care to articulate that, you just did what you'd always done. Is that what I'm hearing? That's correct.
Speaker 4:Yeah, yeah, that's incredible. That's incredible and nowadays especially, I always give a lot of credit back to my grandfather, who helped raise my brother and I, and my parents were working and my grandparents were always there for us. My grandfather was a double amputee, so when he was in his mid twenties he got in a boating accident and he had a hook and a wooden leg and so he normalized. What a disability, what a handicap in my eyes, really was. So when I started losing my hearing because it was a gradual loss over the course of from five to about 13 years old, I kept losing my hearing and it finally stabilized in the profound level, which is the most significant loss you can have, and I just I was supported by my family that to me it was just a hearing aid that helped me hear, just like glasses help you see. And I used this new technology. I thought it was cool. My friends thought it was cool because I said it was cool.
Speaker 3:Oh yes, trendsetter.
Speaker 4:Yeah, so, and that was it. I just always did what I had to do to succeed. I had a teacher of the deaf that was my note taker. She helped me with assignments and studying for exams and things like that. I had different types of accommodations in school and academically.
Speaker 3:So can I ask what is the cause of your deafness? Were they able to diagnose the reason behind it? Was it genetic?
Speaker 4:It's still a theory where we think it's from chickenpox. So a virus, a virus, right. And I had a very severe case around my face and my ears and over time I would just keep losing my hearing and then I just started losing more and more and more and I think it was just a delay effect and my mother always said with the doctor and then they came to an agreement about it, but it's never been really proven. I know there are some studies now that bio genetic testing to better understand the cause. So we're looking into finally figuring it out, hopefully soon.
Speaker 2:I'm just so curious. So we've had people on who were blind and they cleared up stereotypes or assumptions that someone literally can't see a thing Like. So some of the people we've had on the woman from bold beauty I'm forgetting her name as an example she was like no, it's not, like it's totally dark for me, I see some shadows. When you say is it the same thing apply with deafness, where you like don't hear anything or things are muzzled, or is it defined as? I don't know what is deaf, defined as?
Speaker 4:So without my hearing aids I have a high pitch frequency hearing loss in the profound level. So what that means is without my hearing aids, which what they do is they amplify sounds. Right, they don't necessarily help with speech clarity, so it's still difficult to hear what people are saying without reading lips. But without them I don't hear any high pitches. So bells, whistles, alarms, burge, chirping, a lot of babies crying, whining, sometimes women's voices that are higher pitched, that alarm today, the national emergency test that was so loud to me. I was in the middle of a Zoom call with another client and I didn't know where this. I knew it was coming at some point today. I forgot about it and I was in a hotel lobby. So there was some noise over there and I was like what is happening? Is that me or you? And sure enough it was from my phone and my phone was face down so I didn't see the alert. But those types of noises I don't hear at all without the hearing aids on. When they're on, they're amplified.
Speaker 3:So it's more of a. It's a spectrum, right, because, like Lainey said, it's not that you cannot hear anything, it's a certain profile of sound that you're not able to process. So I think you know, clarifying that scale of disability is always important for us to kind of dive into. Going back to young Dustin, right, you were fitted with the hearing aids. How did you obviously seem like a very happy kid and adaptive. What were some of those kind of challenges that you had to navigate as a young child, socially, into your teenage years, into adulthood, dating, all of that fun stuff.
Speaker 4:It's a great question and topic you know Well. First, I give a lot of credit to my mom who drove me back and forth, back and forth to the audiologist to make changes in the settings every week and each time I went I was hearing new noises and it was too loud. There was a lot of stimulation. So we made a lot of changes that took some time to get used to. Academically and socially, I was lucky. I had an older brother who kind of set the tone for me, and in school everybody knew our family and the reputation we had and you know that we were good people and my brother was a class president. So growing up over the years he had a great reputation and we were both athletes. So on and off the basketball court, the soccer field, people knew who we were. We were hard workers and that helped a ton too.
Speaker 4:In regards to my dating life, right, I was a late bloomer, not because of my hearing loss as much, but maybe confidence. I didn't know how to really show the confidence that I had because I don't know that people understood how difficult life can be with a disability and when you look at me, especially over the screen, you don't even see my hearing aids. You don't know that I'm lip reading intentionally. You don't know that I have captions on and you don't know that my hearing aids have Bluetooth, and that's what makes this experience accessible for me. But it's an invisible disability that I have to explain that to people and when I do, wow, that's impressive, right. So I don't think I really fully explained how much I overcame to get me to the point I am today, at a younger age.
Speaker 3:Were there times where you had to really learn how to advocate for yourself in those situations where maybe you were being discriminated against or left out, and what were some of those situations like?
Speaker 4:I remember being at a family event at a Balmitzva and I was about seven or eight, so a couple of years new into being deaf and all the 13 year old boys were all at the kid tables and they started pointing at my hearing aids and calling me Balunius and I didn't hear it. It was when my brother told me and I immediately just started crying and they got a good kick out of it. But back in those days my hearing aids were big right, they were large, covered the whole ear. Now they're pretty sleek and modern and cool technology. But back then it took some time to get used to and every once in a blue moon I would quote be made fun of. But I always set the tone where these are just cool pieces of technology that helped me hear, like Glasses, lpc, and I can still count on two hands how many times I was ever made fun of.
Speaker 3:But I love what you said about your parents being very proactive in making sure that they were always kind of like through the process of trial and error. There's my New York accent coming out Fine tuning your hearing aids, and I think that that can be applied to all types of mobility aids and devices, that it's not a one size fits all. I mean with Leany and I as far as braces and just in that category alone, just the trial and error and testing out what works, what doesn't work, can be exhausting. But I think it's important not to give up and to always be advocating for what feels good, what works good, what doesn't work good. But I wanted to shift things a little bit back to the deaf community. Can you share a little bit about how really large this demographic of people is? And also I love to talk about ASL and the differences in the ASL community within the deaf community, cause I know there's a lot of nuance there as well.
Speaker 4:So there's 50 million Americans that are deaf or hard of hearing, and that's a huge population. That's about 14% of the country that is deaf or hard of hearing affected by hearing loss. In the world, there's 432 million people that are affected by hearing loss. That's even more of a percentage of the world. So it's growing by 2050. That number is gonna go up to 700 million.
Speaker 4:So now is the time to really which is what we're doing bring awareness and find more and more solutions for people that are affected by hearing loss. And there's another percentage of people that don't actually get the help they need. Whether it's hearing aids, a cochlear implant, any sort of solution, whether it's assistive technology or not, they're not getting the help they need, whether it's because of finances, confidence, you name it. So now is really the time to encourage people to join this community. We're the most resilient community we anybody's ever met. That goes for a whole the disability community.
Speaker 4:I'll be the first to talk about mental health. It's not easy and life is not easy, and to have a disability on top of that. Right, you know we've all accomplished so much, so it's really something to be proud of. You should have one of us and all the listeners today you can think of your own personal stories. You know it's challenging, but here we are today and we're going to tomorrow and the next day. So you know it's all about being positive and carrying that energy. But you know, as far as the deaf community, capital D deaf versus lowercase D deaf right.
Speaker 2:What does that mean? Capital D lower D.
Speaker 4:The capital D deaf is really deaf culture, right, they rely mainly on ASL. It's really their own community of people that communicate with sign language. Out of that 48 million, it's a much smaller percentage of people that strictly utilize sign language. Now, I've always been a verbal communicator. My whole family, my friends, everybody has always, you know, been hearing and.
Speaker 4:But I also went to summer school for the deaf many years as a kid and I was acclimented I guess the word would be with people that relied on sign language and that was a different community than what I was used to, because I went to mainstream school and it was during the summer and I realized not only did I want to play basketball every day during the summer, but I felt like it wasn't the community I really associated myself with as much. So I one year I said to my mom hey, like you know, I don't think this is my community, if you will. And she said, okay, no problem, just wanted you to know that they are a community that's out there and there for you at any point in your life. And that was a very powerful kind of moment with my mom where she just understood me and she knew I wanted to play basketball and she knew that I was surrounded by you know the hearing world.
Speaker 3:So I can imagine to you that, not knowing the reason behind your deafness, there was probably always this fear of it progressing, and so that by you know, exposing you to that experience of summer camp and to ASL, it was kind of just like you know if it, if there's a point in your life where you have to rely on ASL in order to communicate that that introduction was made as early as possible to give you that confidence and that sense of community.
Speaker 4:And later on in life. So in college I took her class an old girlfriend at the time. She was a speech pathology major and I decided I'll take a fourth class, even though I didn't need to. But let it be known, I got an A and she got a B plus. But you know it was fun and I really got to learn. And of course, like any language, if you don't practice every day you lose a lot of it. But lately, as you saw, at the runway of dreams I met some people that were deaf and signing and it comes back to you pretty quickly. But if it's not something you practice and use every day, you certainly forget a lot.
Speaker 3:I've been, I've been seeing just in more mainstream media and more obviously with the representation of the deaf community and disability at large. I love a show called New Amsterdam and on that show there's a surgeon who's completely deaf and mute and she signs to do, you know, the surgery and she's just another incredible character on the show. But it really is, for me, as somebody with a disability, is normalizing it even more and it's so exciting to see movies like Koda and all of these real, authentic representations of the deaf community in our culture now.
Speaker 4:And we need more of that right. It is under 5% of actors and actresses are showing a disability and a lot of that percentage is actually played by people without a disability. So the authentic representation is so important, especially for kids that have disabilities. You know, I want children to look up to me you all of us that actually have the same disability and they show that it's an ability that we can be actors and actresses, we can be comedians, we can be whatever we want.
Speaker 2:So I'm gonna have a question that may not be politically correct, but when am I? I don't even know if that's a term anymore, but it doesn't matter. I'm just so curious. Like your speaking voice, oh, like it sounds, you could be like someone wouldn't know that you are deaf from your voice. You know necessarily, right, yes, whereas when we talk about what's your name in that movie, you just mentioned Koda the show.
Speaker 4:Well, anybody like a lot of.
Speaker 2:Yeah, like you know, you notice some people's voices and is that because, like, well, let me ask you for you. Is it because it's such a young age? You accommodated and modeled and used your voice and didn't stop? Is it because people have been signing and that's what they're used to and they never used it? Like, why, how, why is the voice impacted with?
Speaker 4:hearing. It's a combination of things, and part of my accommodations that my mother advocated for was speech therapy, and so at a young age although again at recess I wanted to play basketball they called me in at the end of recess every day, or however many three days of the week, to do speech therapy. As much as I did not love it, I did what I had to do and thankfully the therapist was so nice, Mrs Murphy, and you know I did great and I got candy at the end. The other kids didn't get candy, you know, but I made sure that I gave it a good effort. And my teacher of the deaf was also Mrs Burke, but we still keep in touch.
Speaker 4:She was the speech police, so if I got lazy she would say what was that? You know, say that again, and then I would enunciate a little bit more, right? So I was always, you know, making sure that I gave the appropriate effort. Also, I had hearing before I lost it, so that definitely helped to hear the sounds, the way that they have been spoken For people that are deaf. They might not hear those sounds as clearly as some of us do, and they're not. Maybe if they're mute they don't speak as much as because they're communicating via sign.
Speaker 4:They don't know what it really sounds like, and maybe we don't hear our voices the same way that a hearing person hears their voices. So there's a lot that goes into it.
Speaker 2:Yeah, and I was thinking that too I'm like, oh my God, every time I Estella's like, did you listen to our podcast? Like this podcast, I'm like I don't want to hear my voice ever because it sounds when, you know, for people most people their voice sounds so different when they hear their own voice from what they think it sounds like right, like it's so not what I want it to be, so I don't want to hear it. But obviously you don't want to take that for granted, right? But I would imagine that part of it, too, is practice, and if you don't use it, like with climbing stairs, if you're able to, if you stop doing it, you lose the ability to do it. So the more you do something, the better you get at it, right?
Speaker 3:That's what I was going to compare it to. Like your speech therapy was like my PT in school, Like I hated being pulled out to do it and it was boring and it was annoying, but I'm glad you know and it's those things that we need to make sure that we are preparing ourselves and the self-care element of disability. Hey, Embracers, thank you so much for listening and supporting the Embracid podcast Brought to you by Launchpad 516 Studios executive, produced by George Andriopoulos and hosted by Laini Ispia and Estella Hugo. Our music and sound effects are licensed through Epidemic Sound. Embracid is hosted with Buzzsprout.
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