S3 E2: Sounding Joy - The Story Of One Woman's Hardships That Turned Into A Mission To Help Others.

Host Crystal Hand sits down the Chisty Vogel, a business owner and founder of the non-profit organization Sounding Joy.   As a hard of hearing adult, she knows all too well the struggles of living in a hearing world.  In this interview, she discusses her childhood experience growing up hard of hearing and not having hearing technology due to a lack of financial resources. Crystal and Christy talk about how that affected her life, and the tragedy that lead her to start a non-profit to help families get the medical services they need regardless of the social economic status.  Join us in this in-depth conversation about the importance of language development, hearing technology and how Sounding Joy is working to literally save the lives of Deaf and Hard of hearing people around the country.  

To get involved go to:  

Sounding Joy - Hearing Aid Giving

Become a partner with Sounding Joy contact:

Christy Vogel

info@soundingjoy.org
Call us: 813-526-1870

This podcast is produced and owned by Crystal Hand and not associated with any other company, business or government entity.  "The Other Side of Deaf" podcast and associated websites and social media pages represent the opinions of the host and her guests on the show and do not represent or reflect the opinion of any organization the participants are employed or associated with.  The content here is for information purposes only and should not be used for medical or legal purposes.

Transcript

Crystal:

Hello, welcome back to The Other Side of Deaf. This is Crystal Hand, your host. Hearing is something that most people take for granted and hard of hearing or deaf people that have access to hearing technology assume that everyone that needs or wants hearing aids or cochlear implants are able to get them. 

But the reality is there are thousands of people out there, young and old, that can't afford to make the investment for their hearing. Let's face it, economics plays a role in who has access to hearing technology and who doesn't. So how do we fix this problem? Well, my guest today is working hard to solve this issue. 

 Christy Vogel grew up as a hard of hearing child with this very problem. And despite all the challenges that went with that, she is a successful business owner and founder of the nonprofit called Sounding Joy, an organization that aims to help people that can't afford hearing aids get access to the medical care they need. She is also somewhat famous because she had her own TED Talk.   She has an amazing story and is doing great things. So Christy, thank you so much for being here. There's a lot to talk about today, so let's get started. 

 So let's start with the fact that on your TED Talk, you start about how you found out that you were hard of hearing and you tell that experience. So can you talk a little bit about that? 

Christy:

Yes, so I was about 11 years old in the sixth grade and we had a school-wide hearing test. So it was one of those typical tests that we've probably all taken at least once in our lives where you put the headset on and you listen for the beeps. And then you raise the hand on the side of the head where you heard the beeps. And so it was my turn to sit down in the chair and put the headset on and I didn't hear any beeps. Everybody else was hearing them, but I wasn't. And I was just really straining to hear what was going on. And I thought, well, you know, maybe the headset's broken or something unplugged. And before I knew it, I was in trouble. 

 I had a teacher approach me. She thought I was just messing around and yanked me out of that chair and marked me to the back of the line with all my friends laughing at me. And she told me that I was gonna do it again.  And meanwhile, while I was in line, I was gonna think about what I did. And so as you can imagine, I was so confused. And the one thing that I did know though was I was not gonna give that teacher the satisfaction of failing that test again.  So I tried to memorize what the kids in front of me were doing with their hands. So right hand went up first, left hand went up second, right hand twice after that. And then the next kid sat down and they were raising their hands totally differently. 

 So the test was not consistent and I just had the stinking feeling that I'm not gonna pass this test. So it became my turn again, sat down in the chair and I still didn't hear anything. So fortunately, the next teacher that came by said very kindly to me that I was gonna be referred to a hearing specialist.   And that was how I first found out that I had hearing loss. 

Crystal:

I just wanna stop right there and say how heartbroken I am for you. Because let's talk about that.   First of all, a lot of deaf and hard of hearing children prior to the early detection and intervention, which is what we have now, which kids get tested before they get into school. Prior to that, a lot of deaf and hard of hearing children had what you had. They were identified as misbehaving. 

They weren't listening. And in reality, they couldn't hear, but we have all of these people who were just getting in trouble and you're confused and I don't know, as a mom, I'm super heartbroken for you. So how did your family react? 

Christy:

Well, it was interesting because I suffer from nerve deafness and which is hereditary.  So my mom had it at the time she was not wearing hearing aids my grandfather had it, my uncle, my cousins. I mean, you should join us at a family reunion. We're all yelling at each other and nobody's listening.  So I don't think it was a shock to my parents when they were told that. However, they also thought, well, Christie's getting along just fine. She shows up to dinner on time. She's hardheaded and doesn't listen, which is probably more of the issue than her actually having hearing loss. And also I was one of four children and I think it was really easy just to say, she's fine. What are you talking about? Because I'm the ones telling them as an 11 year old, I'm fine.   What are they talking about? I don't want hearing aids. I don't need hearing aids. So I think as a parent, it's really easy to just go along with that and say, okay, well, maybe we'll monitor it and see if she's missing anything.  And because the hearing aids are so expensive and not covered by insurance, we'll just take it as it goes. And before you know it, I'm 27 and finally getting my hearing aids. 

Crystal:

Yeah, so I think that's, I don't wanna say a universal thing, but I have worked with a lot of families who have had similar reactions where I'm actually looking at their child's audiogram and it's saying they have a severe loss and a parent will say, well, they seem fine. And they come when I call them. And what I discovered through my journey with my children is that just because they can hear sound doesn't mean that they can hear clarity. So I just was actually having this conversation the other day, because somebody said, well, why can't I just talk louder? And I said, well, actually what it is like if you were underwater and somebody just talked louder, you can hear that something's happening, can kind of distinguish things if it's a voice you know, but in reality, you're missing a lot of things. You just don't know it. And we always joke that my children, they hear a hundred percent of what they hear. They don't know what they haven't heard because they didn't hear it. So they think they're hearing everything, right? Even now with the great technology and much better culture, we have a lot of teenagers, preteens that will say, I don't want technology, that's too embarrassing. And they don't understand that they're shooting themselves in the foot, but you know, I mean, it happens, right? So in school, did you have accommodations at all? Because this was before ADA laws, because ADA laws actually appallingly so did not come in until 1990. It was actually July of 1990 that ADA laws actually came into play. So anything prior to that, it was a hit or a miss. So did you have any accommodations in school after that?

Christy:

No, it was very simple. I asked my teachers to move me to the front of class, again, embarrassing. So I was no longer sitting with my friends. I was sitting at the front of the class where usually the problem children would be seated. So I was placed in the front with them for the most part. My mother just wrote a note to all of my teachers and I would hand them the note and the majority of them said, okay, well, we'll move you up to the front. Not a problem. Let me know if you can't hear anything. So it wasn't an issue. But my English teacher in the seventh grade who barely spoke above a whisper, even children who could hear fine had a hard time hearing her. It just so happened I was at the back of her class and I handed her the note from my mother and she told me, well, you're gonna stay seated where you're seated. I have a system of the seating chart. So you're gonna stay where you're seated. Just raise your hand every time you can't hear me. 

Crystal: 

Just hold up your hand the whole time. Exactly. And so I was taught to respect authority. So I did as she said. And not only did the teacher get tired of me raising my hand, but my friends to every time I'd raise my hand, they'd roll their eyes, especially when I would ask a question that was just answered, but I didn't hear it. And they were tired of it too. So finally, my mother had to take a day off from work to come in to school and speak directly to that teacher. And then she was very accommodating. The next day I was up front in the classroom, but it was amazing that my mother had to take time off from work in order to get this teacher to understand. But they weren't trained back then. Just like I hear all the time about the anger that people have towards the teacher that yanked me out of the chair in the initial screening. That teacher was not trained to know otherwise. And I think they do a much better job of training now and teachers do know a little bit more. 

Crystal:

Yeah, it's tough. And even now we still have teachers that don't really understand. And I always tell my kids, it's not because they have ill will, it's just the fact that they aren't trained on this. The majority of people are not trained on special education stuff. And so again, that's a word, special education, people don't like to throw around with deaf and hard of hearing people. We don't like to be in the special education department. But if you don't have those labels, then you don't get accommodations. And those accommodations can mean the difference between your kids really succeeding and the ones that aren't. 

 But I think that going back to what your mother did is that it's so important for parents to get involved. It's so important for them to go into the schools, making sure that there's accommodations. And oftentimes as a parent, that can be really daunting. For me, I didn't know anything about deaf and hard of hearing stuff when we first started. I never met a deaf person. I didn't know what was going on. I had to learn all of the terms and all of the things. And it's very, very scary. And I remember the first time I went to an IEP meeting, an individualized education plan meeting for my son, and I cried, like I just cried because I was like, don't tell me all the things that my son can't do. Like it broke my heart. But the important thing was that I needed to be able to do that. And I needed to be able to go in and say, he needs help, just like your mom did with you. And if she wouldn't have, how much worse would it have been, right? Right. And so I think oftentimes parents just rely on the school systems to know what's best for their child. They have less training than you do about hard of hearing and deafness. 

Christy:

Something interesting that I learned recently was that, and I don't think anyone's at fault here, I think it's just the system, is that the parents aren't trained, like you said, on what rights does my child have in the school system and what should they be provided in order to help them learn as much as they can to be able to hear as much as they can. And so if you don't know as a parent, then how do you know what to advocate for with your child? And then on the other side of things, you've got people managing budgets within the school system. So if you're a parent coming in who does know absolutely what my child's rights are and you come in demanding those, it's really easy for someone to say, oh no, you're wrong, or no, that's not the case, because they're looking at those budget numbers saying, we don't have it in the budget to accommodate, to buy an additional microphone so that your kiddo can hear better. They're just gonna say, no, that's not something that we need to do in some cases. And I don't think it's that we have terrible people in the system, I just think that they're looking at the budget numbers, trying to balance them as well as they can, and they don't know where the money's gonna come from. So I think it's even a bigger job for the parents to get that information, and it might not be readily available from the schools if they're watching those budget numbers and saying, we don't have enough money for these microphones in the classrooms. 

Crystal: 

Yeah, and a lot of people don't realize that that is illegal for the school to say that. They don't have to give you everything that you ask, but they do need to have a reasonable accommodation. And so them just saying, oh, we can't do that for you because it's not in the budget, that is actually illegal. And there always is money somewhere, they just don't always know. And oftentimes, even the special education directors don't know how to do it. And so there are organizations out there that have that ability to help schools and to help parents.  There should be at least one family organization in every state. I know in Pennsylvania, we have one called Family Connections. In other states, it's like Hands and Voices, but all of those are meant to help parents that are new on this journey. And I believe at least prior to recently, they used to all have to have some sort of family program. It's part of the Early Detection and Intervention Program that is a federal and a state program. And if for people who don't know what that is, that is a law that came into place where we were saying, hey, these deaf and hard of hearing children should not be waiting until school to find out.  And so when you have a baby in a hospital now in the United States, you're required to have a hearing test prior to leaving the hospital. And if you have a home birth, midwives are supposed to have a hearing test or refer them to a hearing test within, I think, I wanna say the first six weeks, I could be wrong, but somewhere around there. And so every newborn should be getting tested.  So if you find that your state is not doing that, you need to make sure that you are getting your baby tested within the first six weeks. We have caught so many children early with that, that we have reduced the amount of people that have needed extensive therapy later because we're catching them early. And that's so important. 

One of the things that we were talking about before we started recording was how there's a lot of programs out there that are saying, hey, we need people to identify themselves as having a hearing loss as a disability, even though we don't like to call it a disability. But in order to get these government benefits, in order to get these government-run therapy programs, in order for us to get Medicare or Medicaid to cover hearing aids, we have to have the numbers and people saying, hey, we need this, otherwise the budgets get cut. So it's really important for us to just be honest. And I interviewed somebody last season who was an accountant and he said in his interview, when filling out those government forms, you need to make your mom cry. He's like, you need to say all the things that you can't do, get past the thought of my kid can do everything because they can do anything. But for government benefits purposes, we need to fill out all the things that we can so we can get everything that's out there because the money's there. It's not that it's not there. These programs are there. You just have to tap into them. So I think that's an important thing. And it's something that we have a privilege of having because back before 1990, you didn't have this. Like you were just kind of on your own.  So this is something that was hard fought for. And so we need to use it. 

Okay, so let's go back to your experience as a kid. So did you feel isolated as you were growing up, like with your friends or with your family? Like how did that all feel because you didn't have hearing aids so you weren't really aware of everything that was going on around you?

Christy:

Right. So I was also told that I taught myself to read lips. So that was my way of not even realizing my way of coping and being able to be part of conversations. So looking back, I didn't feel like I was isolated. What I instead felt like was that I wasn't as smart as all of my friends. And I felt like my friends were only friends with me because they felt sorry for me because I was slow. And so I grew up thinking that I wasn't smart. And that takes a lot of rewiring. Once you look back and realize, wait a minute, I was wrong all this time. You know, I was telling myself I wasn't good enough. I wasn't smart enough. I wasn't fast enough. And, you know, I just wasn't worth as much. So that's just a lot of lies that I was telling myself for a whole lot of years until I realized it wasn't that at all. It was just, I couldn't hear. I was missing more than half that was taught in the classroom. It took me five years to get my associate's degree because I couldn't hear everything that was being taught in these large classrooms. So I'm still having to tell myself every day.  I do these motivational chants in the morning that say, Christy, you are good enough and you are smart enough because that was a lot of years of growing up telling myself something else. And I would see it in people's faces too. When I was trying to put together what they were saying to me, what audio I could hear and trying to put it together with the lip movement that I saw, it would come across as I'm slow to process what was being said to me mentally, not because of lack of audio.  And so I would see it in people's faces when I was trying to comprehend what they were saying, they would get a little frustrated with me. So for me, that translated to, well, Christy's slow. Christy's not as smart as everyone else. 

So I still work with that every day. I still struggle with it every day. And even before I go to get on stage and talk to all these people about my experiences, on the way over there, I'm trying to tell myself, Christy, you are worthy and you do have something to say because those old thoughts still creep up and you gotta just shut them down. 

 One of the things that I talk about a lot is that no matter what our walk of life is and whatever our history is of growing up, we have these negative things that we're telling ourselves and we need to stomp that out and turn it around and listen to the positive things that we're telling ourselves because we have 100% control what we listen to in our brains. And unfortunately, we just choose to listen to the negative over the positive. So we have the full power to change that into a positive interaction within our inner selves. 

 Crystal:

Yeah, and it's hard to overcome that. Even as a hearing person, everybody has their things that they're like, oh, I'm not good enough, I'm not smart enough, I'm not this. And I've seen that in my children as well. 

I've seen that people often think before they even know them, they'll be like, oh, they're not as smart. And then it's kind of funny when you look at somebody who just kind of blows somebody else out of the water and be like, yeah, tell me that they can't do it again. So my daughter, she loves to prove people wrong.  And so unfortunately, good or bad, like she has kind of done some things in the past just to prove to people that she could do it, even though she was like, I don't really love this. One of the things was musical theater. She was like, I wanna be in a musical. And I was like, what? What are you doing? Why would you sign up for that? That's gonna be really, really hard. And she's just like, we're just gonna do this. And I thought for sure she'd get cut. I thought for sure that she wouldn't get a part. Sure enough, she did. She practiced every single day. She had a short solo that was maybe like three or four bars, but she practiced those three or four bars for literally every day for like three months. And I said, if I never hear the song from Annie ever again, it will be too soon because she just over and over and over, but she did great. And she learned how to dance, even though she couldn't hear the music. She couldn't hear the start of it. She joined band and she was in the marching band. And she would tell me, I just wanna prove to people that I can do it, even though sometimes she hated it. 

 But then she would come home and she'd be like, this is really hard. And they look at me like I'm stupid. And I'm like, I get it because oftentimes hearing people will look at a deaf person and think, I wouldn't be able to do it. So they must not be able to do it. So it's really people projecting their own limitations on you. And so one of the things that I always tell my kids is, don't let other people's expectations of you define you. Don't let them tell you what you can't do. You can figure that on your own. You do have limitations, everyone does, but you need to figure out what your limitations are on your own, not from other people. And that's really hard when you have people looking at you all the time, like there's something wrong with you. I commend you because that's a big mental hurdle to get over. And you didn't get your hearing aids until age, what, 27? 

Christy:

Yes. 

Crystal:

 So how did that change for you? 

Christy:

Well, the first time I put them in, as you can imagine, technology has improved tremendously in the last 25 years. So when I got my first pair of hearing aids, it was kind of like what you were just saying earlier is if I talk louder, can you hear better? Well, no, it's like turning up a static radio station. You just, it's louder, but you just hear more static. So hearing aids were kind of like that back then. Although as soon as I put them in and started wearing them on a regular basis, I realized, oh my gosh, they were right. I was missing a lot. I had no idea what I was missing. And I had friends of mine who I'd been friends with for a long time saying, wow, you're just so, so much more interactive now and you're not as moody as you used to be. And I'm like, what? Moody? I'm never moody. Now, believe me, I can be in a bad mood once in a while, just like anyone, but I'm still gonna say good morning to you. Or if I'm walking into the workplace and somebody says hello, I'm still going to say hello. I would never ignore even my worst enemy. And what they were seeing was that I was being moody because I would not hear them before I had my hearing aids in. And so I was missing all of that. So I would look back and I thought, oh my gosh, how many people on this planet think that Christy Vogel is a moody person because I wasn't responding to them? I also realized all the buttons making a beeping noise when they were pressed, I didn't realize that they made that noise. I didn't realize all these machines and like credit card machines and things like that would actually make a noise or the buttons on a phone would make a noise. The bird singing in the trees, I mean, I was missing out on all of that. And I thought I was doing okay. I thought everyone was overreacting. And it was after that first week that I put those hearing aids in that I realized, oh my gosh, they were right. And I do need help.  And things just started coming across a lot easier in meetings, especially in conference rooms where people were talking with their hands over their mouth or I couldn't even see their face. Things were easier then. And I didn't feel like I was as tired at night because I wasn't straining so much. 

 When you grow up straining to hear, you don't realize you're doing it. So it was a huge improvement pretty quickly. Once I got used to them, because as you can imagine, it's a process to hearing muffled noises all the time to things that are really loud.  So even things like someone crumpling up a piece of paper in the cubicle next to me, I about throttled somebody the first time I heard that with my hearing aids because it was so loud. So there's a lot of adjustment and there still is even with the great technology that we have today. I talk to parents all the time whose children have just been diagnosed with hearing loss. And I tell them that it is emotional, but there's never been a better time for your child to be able to take advantage of hearing technology because it has come so far and it continues to advance and just makes it easier and easier for our kiddos to be able to hear, especially in the classroom. 

Crystal:

Yeah, and I think that's a really good point that you pointed out is that it is harder sometimes. I think oftentimes we see these YouTube videos of these kids that are getting their hearing aids for the first time and their face is lighting up and it's amazing, but that doesn't happen for all kids. And I usually tell people it only happens for about half of the kids that get hearing aids the first time. Now that doesn't mean that they don't have a moment later like that, but when you first put those hearing aids in, it can be overwhelming. And well, first of all, we listen with our brains, not with our ears. So our ears are like the windows to our brain and then our brain actually interprets the sound. And so it takes a lot for your brain to learn how to listen. And so even with my kids who have had hearing aids for, well, my son has had them for 18 years, he still needs to take breaks. 

 There's something called listening fatigue. I don't know whether you've used this term or not, but listening fatigue with deaf and hard of hearing people where they're saying, hey, I've been listening all day long and I'm tired. I need to take my hearing aids out.  I need to have a break from sound because it's just so taxing on your brain. And when I started learning sign language and I still feel like this today, when I'm in an atmosphere where I'm doing mostly sign language and I'm not doing normal auditory language, I get really exhausted very quickly. And my daughter always says to me, welcome to my world, mom. This is what I do every day. I am trying to figure out what everyone is saying all day long. Even with hearing aids, I have to look at lips.  And so it is exhausting to do. 

Christy:

Plus the aerobics of doing the ASL. 

Crystal:

Yes, yes. So going back to your family and their generational deafness or hard of hearingness, do you feel like that helped you or hindered you in your journey? Because obviously they didn't think it was a big deal. And I've actually talked to other people who've had a similar background where their parents were like, well, we've dealt with it so you can deal with it too. So do you feel like that was the case with you? Do you feel like it helped you or hindered you? 

Christy

I think overall it probably hindered me only because just like you said, well, we've had it, we're fine. And they didn't realize just like I didn't realize just how little hearing they had. And then we also saw that my grandfather who did have hearing aids and my uncle who had hearing aids, they didn't work half the time. They were broken. They were still yelling at each other and not hearing each other just because they probably just needed a new pair and didn't invest in them. And so I remember one of my cousins, Steve, who I talk about a lot, he physically said, I will not get hearing aids because I don't wanna be like Papa and Ronnie, his father, my uncle, because they were just yelling at each other all the time. And he's like, why would I want that? And so that was a really negative connotation.   And that's one of the reasons why my cousin Steve did not get hearing aids until the last years of his life. And he only got those because my brother, who later in life needed hearing aids, donated his hearing aids to my cousin Steve, because Steve was brilliant. He was smart. He was funny. But to meet him for the first time, you would think he was less. He was slow because he could not hear. 

And so my brother tried to help him with the hearing aids, and he finally heard his granddaughter speak for the first time. It did change his life, but Steve, unfortunately, was an alcoholic and he was isolated. And I grew up just thinking that was Steve.  Steve liked to drink and that's the way Steve was. Well, he basically drank himself to death. What I didn't realize until after his death was that the addiction rates for children who don't get their hearing aids and young adults who don't get their hearing aids are five times that of children who hear normally. 

 And so I look back and I applied that to my cousin Steve and I thought, my gosh, if he had gotten his hearing aids as a child or certainly earlier in life, would he have been totally different? Maybe not an alcoholic and he'd still be here with us today. Looking back at how lucky I was that, you know, I didn't get my hearing aids until later in life and I was okay. But so many children and young adults are not okay because they're not getting their hearing aids. 

 When my brother donated his hearing aids to my cousin, I said, you know, wouldn't it be nice one day to have a nonprofit that does this to help people get their hearing aids? But it wasn't until I figured out or I read about those stats that I said, okay, this has to happen today. Not one day when I'm retired or one day after I sell my marketing agency. It has to happen today because it's not just children not being able to hear and helping them to hear better. 

 It's actually saving lives. And so that's when I decided, all right, I'm going to move forward. I don't have the cash. I don't have the time. I don't have the resources, but something's got to be done. 

Crystal:

Yeah. So we're going to talk about that in a minute. But before that you talk about this in your TED talk about this is about saving lives. It's about making sure that people have access to hearing aids, that these statistics are real, whether we want to admit it or not.  Children with any type of disability are higher risk for all sorts of things, including addiction. They're also at higher risk for abuse, which is horrifying. But you kind of talked about that in your TED talk, and then you kind of got a little pushback from the Deaf community. 

So before we go into your charity and how you have started and like really making a difference in all of this, let's talk about what people's reaction in the Deaf community. And when I'm talking about Deaf community, I'm talking about capital D Deaf, which are culturally Deaf people, not people that just have hearing loss. So what was the reaction that you got from that? Because you said that you felt like kind of surprised by this. 

 Christy:

Right. Nobody wants to offend anybody, right? But when you're out there enough, you're going to offend somebody apparently. So one of the things that I'm learning most about is about the Deaf culture and how if you're Deaf and if you're hard of hearing, that's looked at as two totally different groups, depending on who you are.  And that's absolutely fine. But with my TEDx talk, I was grouping everyone together int one group. And basically it was assumed that I was saying that everybody can be fixed with a hearing aid.  And that's absolutely not what I was meaning. That's not what the intent was, but it's everybody's choice, of course. And so just like anything else in life, but the way it was perceived, and I totally understand why it was perceived this way, was that I was saying that everybody needs to be fixed with a hearing aid and that a hearing aid is the way to be fixed. 

 And so I'm getting comments from people. The majority of the comments are, how do you know me? This was my life. Thank you so much for sharing this. But occasionally I'll get a comment that says, I'm fine just the way that I am. I tried hearing aids and they weren't for me. And my response is then, I'm glad that you tried them. And I'm glad that you made the decision that they weren't for you and that you're finding the best way for you, which is what we all need to do. And then some from the Deaf community are saying, how dare you look down on us? And that's absolutely not what my intent is. With everything that I said in my TEDx, it was not with the intent to put down anyone for not doing whatever they can to hear, because that's just that family's choice in every case. 

Crystal: 

Yeah. And I think the biggest thing is language, right? So we talk about hearing, but what we're really saying is that a child needs to have language and they have to have access to all of language. And if you are not signing, so again, most hard of hearing or Deaf children are born to hearing parents. 

So the majority of children born with a hearing loss are born in a hearing family that sign language is not their first language. So the ultimate goal is to have a child be fully integrated in their life, whether that's at home, at school, everything, to have access to all the language that everybody else has around you. So when you grow up in a culturally Deaf family and they use sign language, then that's appropriate for them. 

 And having hearing aids may not even be something that they're even interested in because they have full access to language. The problem is, is when we have hearing parents who don't want to commit to learning a different language, which is fine. Let's be honest, hearing parents have a lot on their plate.  Every parent has a lot on their plate. And so sometimes learning a new language isn't feasible for them. So then we have to think about, all right, well, if you're not using a manual language, we need some sort of verbal language. And how do you get verbal language if a child can't hear? Well, you have to have technology. It's a different type of work and neither one is better than the other. But the important thing is, is that a child has access to all language. 

 And that, I don't think people realize is such a big thing because language is not just about learning. It's about how are you contributing in your family? How are you interacting with your friends? How are you socially interacting with the world? Are you able to do things that everybody else can do? Can you go to the movies? Can you go to museums? Can you go to all these things? That's such a big portion of our lives, not just can I hear the teacher, but having access to language. And so it is such an important thing because kids that have hearing problems often isolate themselves because it's too hard.  And so they end up being not engaged in community as much as they could be because of that very reason. So yeah, I agree. It's so important. And if it's not your choice to get hearing aids or cochlear implants, then language has to be the focus of any language. What I've learned over the years in my training in my previous job was that language in our brain, whether it's visual or whether it's auditorial, it's the same part of our brain that lights up. And so it doesn't matter what kind of language you're using, whether it's English, Spanish, Italian, sign language, whatever it is, it's the same part of our brain that lights up. And that's the important part, right? So it's important that we have language. So why do you think, because you had one or two family members who you lost because of addiction and other problems that were hard of hearing. So why do you think that our youth and our deaf and hard of hearing young adults are more susceptible to it from your point of view? What do you think kind of pushes that along? 

Christy:

Well, I think it's very easy to become isolated. So I've talked about people thinking that I was moody before I had my hearing aids. So there's that perception of, well, she's aloof. She doesn't want to talk to us, whatever. 

And then they only try so much, right? And then there's the other side of it where it's just so hard for me to be able to hear in these conversations. And I'm, I'm missing a lot. And I'm quite frankly, feeling stupid because I'll ask something after my girlfriends had just talked about it. And then they look at me and roll their eyes because I just asked what they thought was a dumb question. So after a while you quit asking. And after a while you quit having the conversations. So it becomes easier to sit in the corner and just watch them than it is to be a part of that group trying to hear for fear of, of feeling stupid. And so I can see that path being easier to take. And that's when the isolation sets in. And then things like drugs and the bottle, they become your friends. And it's not overnight, but I can see that path, but it's amazing. I talk to audiologists all the time. And some of them don't know these stats. They don't know the miracle that they're bringing by helping a child or an adult get their hearing aids because they're reducing those addiction rates and those suicide attempt rates every time they're putting hearing aids in an ear. 

Crystal:

Wow. You know, I see that same thing in my children and my children's friends. I always say that my children are blessed because they have each other. Both my son and my daughter have hearing loss. A lot of times in like big family gatherings, or if we're out in like a busy restaurant, they end up cornering themselves off and they just talk to each other and ignore everybody else. Like nobody else exists in the room. And I always thought that it was weird and also a little special, but I realized now that it's very much self-preservation. This is a person I can talk to everyone else. It's too overwhelming. It's too much. I've asked three times to repeat themselves or we have big family gatherings. And when it's in our home, when it's just the four of us, my husband and I have learned one person at a time talks at the table, right? We don't talk at the same time. One person talks and everybody else shuts up because it's too hard for them to follow multiple conversations. 

 So we just have adapted to this. But when we go into big family gatherings or we're at a party, other people don't follow that. And so there's this conversation over here and this conversation. And I watch my children and their brains are like, they're following ping pong balls. And after about maybe an hour, they're like, I'm done. And then they just go and sit in the corner. And thankfully they have each other because it is too much. And then it does lead to loneliness. And then the expectation is that, well, you're not trying hard enough. She's not trying hard enough to be a part of our family. And it's like, really? And that's a lot of pressure because then it's not only can I not keep up, but now people are looking at me like I'm the one that's rude because I can't keep up. So yeah, I can totally see how that can lead to loneliness and go down that road. 

 Christy:

And not only with children and young adults, with our senior citizens, dementia creeps in so much faster because their brains aren't active. We've all had grandparents who they used to be engaged. They used to be a part of the conversation. They'd start the conversation. And then as they get older and their hearing gets worse, they are farther and farther away from the table and they're not responding as much. And maybe they're just smiling and nodding and pretending that they're hearing. But the brain activity goes down significantly and that just opens the doors wide open for dementia to start creeping in. And I beg our senior citizens. I talk to veterans a lot and they get their hearing aids paid for. Not a problem. And they'll tell me stories about, well, you know, I tried them and they didn't work and they're sitting on my dresser right now. And I will beg them, please, please wear them because this is what could potentially happen. 

 So it doesn't matter what age you are. If you're not hearing, if you're not fully engaged, as engaged as you could be, then there are going to be negatives to that. 

Crystal:

Yeah. And wearing hearing aids for the first time is a big adjustment, as we've said, not just for kids, but for adults. What I usually tell people is, and I don't know if you can attest to this because I don't wear hearing aids, but I know just from all the families I've worked with and my own children is that start wearing them in quiet environments. Don't wear them for the first time in a busy restaurant. The first couple of times you wear them, wear them at home when it's quiet. Don't have the TV on. Just listen to one person's voice and then kind of move your way up because it can be too much and it can actually physically hurt if you try to do too much too quickly. It's like learning how to exercise. You exercise that brain and you just need to do it slowly. You can't just jump in and then be like, this isn't working. You have to be as slow and steady. Was that the way it was for you?

Christy:

 Absolutely. And it's like you said, you're also training your brain. So it's more than just the volume of everything. Actually, the volume of it is probably the least of the issue. It's just the clarification, or at least with my hearing loss, it's clarifying the sounds that I'm hearing. If it's a voice and someone saying something to me, especially if I can't see their lips. And so starting off with small doses at a time, as I recall, I was told to just wear them a little bit here and there because it is exhausting. So as exhausting as it is to not be able to hear and to be straining when you're first putting the hearing aids in, that's overwhelming and exhausting as well. So I love your idea of just starting in a quiet space at home, one conversation at a time, and then slowly working into it because it can't just be going from not hearing or not hearing well to 24-7 they're in your ears, and then eventually working your way up. And the way that I wear them now, and not everybody wears them this way, I just assume they did, is they're on my nightstand. It's the first thing as soon as the alarm goes off, it's the first thing that goes in my ears. And then when I go to bed at night, it's the last thing before the light goes off, then I take out my hearing aids. And I tell my husband, ears are out. Because once that light goes off, and he starts talking, I can't read lips, my hearing aids are out. So I'll have to turn on the light and put my ears back in. 

Crystal:

That is funny. Okay, so let's start talking about your nonprofit. So that's kind of where the TED Talk started, is that you developed a nonprofit because of these problems that you saw. And you were like, I got to do something. So you started a nonprofit called Sounding Joy. 

 So tell us about that. How did it get started? What do you do? And where is this headed? Because you're in this growth period right now where you're doing some bigger things, which is exciting. 

Christy:

Yes. So it has certainly taken on a life of its own. And believe me, Crystal, once I heard those stats, I wasn't saying, well, I need to start a nonprofit. What I wanted to do was be a great fundraiser for another organization that was already doing this just so that they could buy more hearing aids for more kiddos. And so I researched that, and there really weren't any organizations out there that were doing it well. I was talking to the school district audiologist. I'm in Pinellas County. I was talking to Pinellas County and Hillsborough County school districts, which by the way, Hillsborough County has one of the top numbers of children who have hearing loss within the school district in the US. So there's a high concentration of kiddos with hearing loss. So these school district audiologists were telling me about the gaps that they were seeing, that they really had no place to send these kiddos for resources if they had a hearing need and then there was an issue with a financial need. So if they're on Medicaid, as you know, their hearing aids will be paid for. But beyond that, up until the middle class, there's a huge gap of children needing hearing aids and their parents just can't afford it. I mean, we're looking at $8,000 for a pair of hearing aids and insurance rarely covers it. So too many children were going without. The school audiologists were telling me that they're tired of telling parents that their child needs something and these audiologists were not able to provide them with anything when the parents couldn't pay. So that's when I realized, okay, there is a need and so I do need to start a nonprofit. And that's when Sounding Joy was born. 

What really propelled me to start doing the research in addition to losing my two cousins to addiction was I was at a Tony Robbins event. And if any of you listening have ever listened to a Tony Robbins webinar or the video or been to an event, it's exhausting. It's exciting. You take a look at your biggest fears face-to-face and you tell them that you're going to knock it out of your system. And towards the end of this five day, like 17 hour a day seminar, Tony Robbins challenged all of us to do something that creates massive impact and scares the hell out of you. And so we were on a rare break because there usually aren't breaks during these seminars. And I told my group, there was five of us. I said, I'm going to start a nonprofit. I'm going to get people hearing aids. And it was scary to actually say that because, you know, what if I fail?

 So this whole failure thing, you know, immediately pops up. And so a good friend of mine who was sitting to my right, Shane, who is now one of our most awesome board members says to me, wow, Christy, I see how passionate you are about this. I've never seen you speak about something like this in this way before. And he said, I'm going to help get you started. And he wrote a check for $10,000 right there on the spot. He held my feet to the fire. He pushed me over the edge because as passionate as I was about getting this started, and I would have gotten it started immediately. It would have been way too easy to go back to work on Monday morning saying, it's a great idea. I'm going to do it one day, but I just, I don't have the time. I don't have the resources.  That check, put my feet to the fire and made me do it that day as opposed to two months down the road. 

So I continued my work with building the program with the school district audiologist. They were meeting with me on a monthly basis. And these are people who don't have enough time to get their job done yet. They were taking the time to meet with me. And so I got as much information from them as I could. And we started buying hearing aids in 2022. And we develop partnerships with companies like one source hearing who gave us great hearing aid discounts. So now we can buy more hearing aids for less money for more kiddos. And early on, we were able to partner with pediatric audiologists and ENTs who were giving their services either pro bono or at a discounted rate that we would pay for. 

 Most recently, and it's not official yet, but we are at the very early stages of partnering with one of the largest children's hospitals in the Southeast US, which will give us access to 22 audiologists in the area. And that's just a springboard for us to eventually go nationwide. So right now we are in the Tampa Bay area. We're in two counties. We'll very quickly move to about 17 counties in the next few months. And the sky's the limit from there. 

So we're helping a lot of kiddos. There's still a lot of ears out there that need help. And I'm just shocked at the growth that we've had in such a short period of time, the grants that we're receiving. Anytime I tell my story to someone, they just want to know how to help, whether it's a donation, whether it's volunteering, whether it's getting an auction item, they want to help because it seems like everyone knows someone who has hearing loss, whether it's a grandmother, whether it's a kiddo, whether it's a cousin, they've seen the difficulty they went through and the difficulty with trying to pay for hearing aids. Even if you've got two working people in the home, a stroke and a check for $8,000 without planning for it, that's a big ask for most of us. And so the help needs to be out there. And we're excited that we're able to provide that help. We're trying to build this organization so it is scalable so that we can go nationwide because the need is so prominent.

 Crystal:

That is amazing. And so, like you said, you're currently in Florida, but you are quickly moving nationwide. And so hopefully, and anybody who's listening to this, if you are interested in helping out with that, you can get connected and we'll talk about that in a little bit. 

But let's talk about, first of all, the fact that there's a need for this because insurance companies don't cover hearing aids. And some states, so in Pennsylvania, for example, we have what we call the disability loop in the Medicaid system. So our children from age zero to 18 get medical assistance to help with anything if they have a diagnosed disability. And so hearing loss is part of that. So they do get their hearing aids covered regardless of income. But most states are not like that. Most states do not have that type of setup. And so then you only get maybe the very poor that are on medical assistance that are getting it or the very wealthy families that $8,000, no big deal, write a check. But it's those middle families that they're doing okay, but maybe live in paycheck to paycheck, or maybe they just don't have eight grand. And let's be honest here. So your first pair of hearing aids are not your last ones. So you change hearing aids every five to eight years, and that's stretching it. And by that time, technology has changed, especially with little ones, with the ear molds and all of that stuff, all of that adds up. There was a great need for this. There still is a great need for this. 

So I think it's amazing that you started this and that you've got moving and had the guts to do it, it's so scary when you do stuff like this. 

It's so scary to step out and try these things, but I'm really excited to hear that there's so many people that are willing to come alongside you with all of this. So if somebody needed to get assistance with hearing aids, well, first of all, do you take applications from people outside of Florida or is it just Florida right now? 

Christy:

Right now it's just Florida. Because it is technically a medical procedure, Sounding Joy can buy the hearing aids all day long, but getting them programmed and fitted and getting the child screened, an audiologist and, or depending on what the need is, an ENT must be involved. 

So that is what our restriction is more so than just buying the hearing aids. And so that's why it's such a big win for us to be partnering with this children's hospital, because that's going to give us more provider feeders in a lot more areas. So we're going to really be able to streamline that.  If someone from Alabama called and said, Hey, my son needs hearing aids, what can you do for us? My recommendation would be to go to your school audiologist or your school nurse, and ask that question of them. And if there are programs available in your state, then they'll be able to point you to them. Unfortunately, there aren't enough programs. 

 And just like you said, in Philadelphia, that's a fantastic program. State of Florida does not have that. You're covered if you're on Medicaid and then ages zero to three, we have early learning coalition that will cover that. That sounds similar to your program, but yours is zero to 18. Also within that, and including Medicaid, a lot of these programs are so difficult to be able to be approved that, you know, some parents, they just, they don't have the time to do it or they don't have the time to see it through. They're working three jobs and they have four kids. And it's just not something that gets to the top of the priority list. So we have kiddos that are in need that qualify for Medicaid, but it's just not happening. So they suffer because of that. 

 And some programs won't take them because I'll point them back to, well, you need to get on Medicaid. Well, we don't know that that's going to happen or not. So it just really depends on the state. 

We would love to be able to help everyone tomorrow, but it is dependent on the providers that we're able to partner with. And we are asking those partners for pro bono or free services. Insurance does cover the services some of the time, but we are paying for those services when there is no insurance coverage.  And of course they are not paying for the hearing aids themselves 99.9% of the time. 

Crystal:

Okay. So what you're really saying is, is you need more audiologists to partner with.  You need more hospital systems to partner with so that anybody who needs these can actually, instead of connecting to you, can just connect with their audiologist and their audiologist can point to you and say, okay, we can find this. So if I have an audiologist or an ENT that's listening to this podcast, how can they get in contact with you to start that process of getting partnered with you? 

Christy:

They can call me directly. They can go to our website, soundingjoy.org, and send me an email at cvogle at soundingjoy.org. All of that information is on the website. And I love talking to audiologists. So I would just love to have a conversation and really get those feeders out there because you're right, that's been our biggest hurdle. We can always raise more money, obviously. But if you were to tell me that our biggest hurdle in starting all of this would be getting access to providers to get access to more ears, I would have been in shock. And I still am in shock. So we are learning better ways of having these conversations and going to the providers as opposed to saying, we need discounted services and we need pro bono services to an industry that, by and large, they don't have enough bandwidth for their paying patients. So when someone like myself comes in, and believe me, audiologists, for the most part, not to stereotype, but as a positive stereotype, audiologists have the biggest hearts in the world. And they just want to help. But if they don't have the bandwidth, they're not going to be able to work with my organization that's asking for discounted or pro bono services. So instead, we've changed the conversation a little bit to work with organizations that have a foundation. And we are giving in-kind gifts that is seen as a donation. And those in-kind gifts are when we are buying the hearing aids through our discounted resource. Because believe it or not, we get better discounts with our one-source hearing partner than major hospitals do, than major ENT practices do, which I was in shock. But that's just how much these partners are trying to help us. 

Crystal:

So with this one-source hearing, what kind of hearing aids do you provide? Do you have a specific brand you use, or is it just all sources? 

Christy:

So what I learned early on is that we want the audiologist to be able to recommend the best hearing aid for that child based on why do they have hearing loss? What level of hearing loss do they have? What environment are they living in? How old are they? And so we had that in mind when we started partnering with these buying sources. So as it works out, even though our audiologists are open to ordering any type of hearing aid, especially from the major manufacturers, I would say 99% of what is ordered is Phonak. Because my understanding is that all the manufacturers are fantastic out there, but Phonak, instead of just making smaller hearing aids with the same technology for the kiddos, they program them differently. The technology is different. Much more about not just shrinking the size of the hearing aid. It's creating the technology based on the way kids need to hear. Okay. So majority is Phonak, but they can do anything. 

 Crystal:

They can use any one. Okay. It's up to the audiologist. 

So that is something that a lot of people don't understand is that hearing aids can be programmed to be very specific to your hearing. I often hear somebody say, well, why can't I just buy the drugstore ones that you can get at Walmart? That's a whole another episode of why you shouldn't do that. 

Christy:

Yes. 

 Crystal:

And we won't get into that. And I actually really would love to have an audiologist on my podcast talk about that in particular. That's a separate episode that we can cover later of why you shouldn't do that, but having an audiologist program hearing aids to your specific hearing loss and what that means for you is so important. 

 Christy:

And it's just like, you know, take a look at your car. You will use your hearing aids more than you use your car. Did you buy the absolute cheapest car on the lot to get you from point A to point B? Your hearing aids are even more important than your car is, and you will use it more than your car. So invest in the best. If you can, we're all limited, but invest in the best that you can because it will change the quality of your life. 

Crystal:

Okay. So we're going to put the links in the description about how audiologists can get ahold of you and help broaden this program. The other thing is how can people donate to this cause? 

Christy:

So go to soundingjoy.org. And speaking of the $8,000 price tag, so with our discounts, we get a pair of hearing aids for about $1,500 on average. That's a question that we get very often. 

 And to your point, if it's $5, that goes towards that $1,500. So you're helping a child get a hearing aid. If it's $1,500, that's fantastic. There's a pair of hearing aids right there. If it's $10,000, then we can help a lot of kids. So every size donation is very much welcomed and will just help us get access to more kiddos. 

 Crystal:

Okay. So if you are listening to this, go into the description. I will provide all of the links there so you can get access to everything there and get connected with Christy. 

 So we're going to wrap this up cause we've been talking for a while. So last words of advice I actually want to have from you. You are a successful entrepreneur. You are someone who just recently started a nonprofit. Do you have any advice for those deaf and hard of hearing teenagers, young adults out there? What is your advice to them going forward? 

Christy:

Well, it's interesting because you're asking me this as a seasoned entrepreneur. And the answer I'm going to give you is I'm stealing it straight from your daughter. Whenever somebody tells you, no, you can't do that, take that as fuel for the fire in your heart to get it done. Because I still to this day have people say, Christy, you don't have time to start a nonprofit. What are you thinking? So the negativity doesn't stop. It's just how do we interpret it and how do we use that to fuel us as opposed to putting us down. And it's just like you pointed out, Crystal, when someone tells you you can't do something, it's because they're probably looking at themselves saying, well, if I were in that situation, I wouldn't be able to do it. Or they just simply don't understand it. And so take that as an opportunity to prove them wrong and how good it feels to turn around and say, look at me now. 

Crystal:

I always tell my daughter the best revenge is just do it. And then they look stupid. 

Christy: 

Right. And you can just smile at them. 

Crystal:

That's awesome. Well, thank you so much for being on here. I'm so excited for everybody to hear about your story and about everything that you're doing. And let's hope that this is a help for launching even bigger things.  I think this organization has such potential. And my hope for you is that in a year or two when I talk to you, you'll be like, we are everywhere. I would love that. 

 So if you're listening to this and you're an audiologist, you're a health professional, contact Christine, make some partnerships. Let's get this going. So thank you so much for being here. 

 Christy:

Thank you, Crystal. 

Crystal:

If you're just tuning in for the first time to my podcast, I encourage you to go back and listen to some of my previous episodes from last season, where we discuss an array of topics from all different perspectives. Don't forget to like and subscribe to my channel. 

And if you really like my podcast, check out my Facebook and Instagram pages. And of course, share with your friends. Also, check out my YouTube channel where I have the first three episodes of the podcast interpreted into American Sign Language. And we'll be continuing to add more as time goes on. Stay tuned for future episodes coming out. But until next time, I'm signing off.