Transcription of Episode:
Introduction: Welcome to another episode of a year of listening the podcast where I tackle all the topics your mother warned you never to discuss at cocktail parties. I'm your host Colleen Powell. Each week I sit down with a new guest and we discuss a controversial issue with compassion, civility and nuance. We hope that by listening we can grow our compassion, empathy, and understanding for viewpoints different from our own.
Colleen: Hey there before we start today's episode, as it is November the month of gratitude, I just want to say that I am so thankful for you all. Thank you Faithful listeners for listening to others ideas when they are easy to hear and especially when they are hard. A recent episode hit a nerve with some people and I got so much great feedback from you all who said I didn't agree with this but I kept listening. Thank you! That's what we need more of in this world. Recently, someone asked where they could leave a comment about an episode. You can always comment on episode posts on social media @yearoflistening on Instagram and Twitter or you can come join our Facebook group facebook.com/groups/yearoflistening and leave a comment there. Another great place to find out more info about an episode or leave thoughts on the show is over at the show notes page for a particular episode. You can find a link to the show notes page at www.ayearoflistening.com. Click where it says episode show notes can be found here. Okay, and now our show
Colleen: On today’s episode I am sitting down with Jason P Anderson. Jason Anderson is a disability services counselor at a large University focus with the focus on deaf and hard-of-hearing students his personal relationship with deafness hearing loss and disability allow him the unique opportunity to see multiple perspectives when working with students and staff of all backgrounds. He also founded and directed a nonprofit resource center for six years geared towards improving employment outcomes for people that are deaf and hard of hearing and he did a TED Talk titled the art of self accommodation. Hi Jason.
Colleen: thank you for being here. Jason is actually good friend of mine. And today we are going to be talking about a probably little-known polarizing issue. If you don't have any personal experience with it, and that kind of has to do with Cochlear implants and the deaf community. So For me, this is a really personal issue because my son Liam is deaf and wears two Cochlear implants. Jason is also deaf and wears bilateral Cochlear implants and we're going to hear about his hearing loss experience. We're going to hear about what exactly this polarizing issue is and and we're gonna kind of talk about it for this episode. I am going to have a transcript of the entire conversation up on the website. So if you are deaf or hard of hearing and you like to follow along with a transcript that will be available at the show notes page. You can go to a year of listening.com and find it on the show notes link with this episode. So just want to get that out up front for people who may be listening and going, “I'm having a hard time.” So Jason, let's start. Why don't you tell us a little bit about yourself and your experience with hearing loss.
Jason: Sure. So my hearing loss history is kind of something that's been following me for my entire life and I'll try to give you the condensed version of it. I was born hearing with normal hearing and about the age of two. I had something called spinal meningitis and spinal meningitis is something that's I don't think it's as common now as it used to be back in the day, but it wasn't really fully understood. And what ended up happening is. I lost my hearing on the left side completely and have fluctuating hearing loss and my right side so it's completely gone on the left side. My parents didn't actually find out about my hearing loss until I was about maybe three years old because I was doing so well with conversation and they were actually watching, I believe it was 2020 with Barbara Walters if anybody remembers that show and they were doing a story about meningitis and they found out that it's very common for students have hearing loss on one side. So they brought me and had me tested and all that other stuff turned out that I was actually completely deaf on my left side and I had fluctuating hearing loss in my ride it right side for pretty much my entire life. I went through school without using any kind of accommodations.
Colleen: Did you wear a hearing aid on that right side at all or nothing?
Jason: They actually put before hearing aid believe it or not on the left side and the right side because we wanted to stimulate the auditory nerve and the left side never really did much of anything. And so I kind of stopped wearing that. The hearing aids on the right side were always an issue for me. So I used to purposely break my hearing aids.
Colleen: lovely. I would have killed you as a parent of a little boy with devices.
Jason: Oh my gosh. Yeah. Oh, yeah. Do you remember seeing like old comic strips where they had that nerd in the video, um at that thick glasses with a piece of tape in the middle that was kind of like what my hearing aids look like I always had people like masking tape on it because my dad got tired of, you know, going back to the audiologist and having them fixed and he would actually masking tape them back together and then poke holes in it for the microphones and stuff - so I gotta do what I gotta do. And then when I was about 22 years old, I ended up losing my hearing in my right ear. We're not really sure how it happened. I wasn't sick. I wasn't you know, there's nothing going on physically. It was just all the sudden it started to get worse and it probably took between you two and three weeks before I eventually lost all my hearing and being a typical guy I decided I wasn't going to go to the doctor. I wasn't going to look into it and make sure that there was something wrong with me and I just kind of ran with it now at this time.
Colleen: Did you, were you signing? Did you use ASL before this or did you just go from being somebody who was lingual and and used all oral communication to to then being completely deaf?
Jason: It was actually exactly that like I didn't know a lick of sign language. I didn't know any deaf people whatsoever. It was kind of a threw me for a loop and I'll be honest with you. I got really really significantly depressed. I had no idea how, Like, what I was going to do with my life, you know, I was already struggling with hearing loss. And you know now you’re basically in this different situation where you have to navigate the world without being able to hear anything and I was I was just at a loss then with what I was going to do. So almost immediately my dad brought me to the to further Medical College, which is eventually where I got my Cochlear implants done, to get tested to see if I was a candidate for implants and I was approved. Okay at that time. I felt like there was something that I was meant to do with my hearing loss. And even though I was really depressed I just felt like it was too quick to jump into this vision of getting a cochlear implant. There was something there was a reason for it and so I felt like my my goal in life is to figure out what that reason was. All said and done I ended up living for about 10 years before I got my Cochlear implants. I went to college, learned sign language, basically embraced life as the deaf person. Yeah after that time after about 10 years, actually, I think it was nine years after thinking about it. I went and I decided to get my first cochlear implant and then shortly after about a year after that. I got my second.
Colleen: Okay, and we're going to talk about that decision, but I want to pause here because there are some people, I certainly didn't know what a cochlear implant was until my son needed one. So, why don't can we real quick just explain exactly what a cochlear implant does and how it works for the very basic 101 version of that.
Jason: Sure, so cochlear implant essentially everybody has in each one of their ears something called the cochlea and it looks like a I guess the tiny little spiral piano for I'm sorry, It looks like a spiral
Jason: seashell yes, snail. There we go. That's perfect. And on the inside of that snail like a snail shell, there’s a pathway that goes all the way to the center called the Apex and inside of there's millions and millions of tiny little hair called cilia and what happens is it's the last passage before for sound before it goes into the brain and the sound travels through that snail and it stimulates those scilia which causes it to stimulate a particular part of that cochlea and connection sound to Whatever frequency it's being stimulated. Hope that was clear.
Colleen: That is clear. The only thing I would say is that that snail kind of as you roll it out. If you were to like take that little like circular snail shell and roll it out. It was kind of like a piano with the lower notes to the higher. It's and it kind of rolls out that way.
Jason: So what happens is a person with hearing loss. It's called sensorineural hearing loss. And that's the kind of hearing loss that I have and it affects the either the cochlea to sell for the silly on the inside. There's no repairs and they either become damaged or they fall off or they go missing or there's not so many of them. And so what a cochlear implant does is they insert an electrode array into the cochlea and there's little electrode points that go on there and they electronically stimulate the different parts of the cochlea, to basically complete the sound of stuff, replacing the the hairs that are in there and it's doing the job of the hairs But in an electronic fashion.
Colleen: so it doesn't sound natural and acoustic. It's an electric stimulation. So it sounds different which we can get into too, but it is also there's then a device implanted in your head. So there's this electrode array that gets implanted into the cochlea and that connects to an internal processor internal device. That will what does it kind of it connects to the auditory nerve. I mean all of that connects to the auditory nerve and stimulates the auditory nerve which then your brain uses to hear. And then there's an external component, the external processor which looks kind of like a hearing aid with an extra sort of piece attached to it that sticks to your head with a magnet and that is what takes the sound and translate it, translates it into the electronic, you know stimulation language. And that's how you hear.
Jason: It’s a little funny side note to that. The number one question that I get when people see it for the first time is they asked me if that's a new Bluetooth headphone.
Colleen Yes. Yeah
Jason: I joke around and say. Yeah. It's transmitted directly into my brain and they say, really and then you say no
Colleen: Yes, I got an I had surgery so that I could have a Bluetooth in my head. It's exactly what. yeah, we have gotten that before as well and I will post some pictures on today's show notes page of what a cochlear implant looks like maybe we'll even put a picture of Jason up there where you can see his cochlear implant. So so that is basically what a cochlear implant is. Now, why is this a polarizing issue? Why, you know, most people who are in the hearing world would say this is a miracle. Why would anybody not be super excited about Cochlear implants, but the truth is that that is it is a controversial issue in the deaf community and so do you want to share a little bit about why that is or what the issue is?
Jason: Sure. So part of my journey of self-discovery was back when I first lost my hearing I decided that I was going to go back to college and I didn't know it at the time but the college that I went to was actually the one that I work for now, but they have a very large population of deaf and hard-of-hearing students and they have a big program, that’s ASL studies and they have an interpreter training program and a lot of deaf students that go there and so it's kind of a product of my attending University and having to take foreign language. I elected to go and take some American sign language classes. And as I was taking the American sign language classes, I started getting to know more and more deaf people and they offered deaf kids, excuse me, Deaf culture and deaf history classes and these classes. They talked about Cochlear implants and I didn't know any of this stuff before when I was, you know, an initial candidate for the Cochlear implants, but it turned out that there was kind of like a hot-button issue with Cochlear implants in the terms that it was seen as, it's called a pathological perception of deafness, which means that deafness was a Defect or is a defect and in order to rectify this defect it must be medically repaired through use of a cochlear implant or surgery and it's kind of viewed as exactly that, that it's a defect and that it's something that needs to be fixed and deaf people don't actually feel that way.
Colleen: So and I just want to insert here because I think there is something important to talk about in our history, there has been a history of, before this technology existed, it was seen as as a real defect, to the point where deaf people were encouraged not to have children or were even sterilized so that this defect did not get spread further. There are a lot of horrible ways in which deaf people were treated in the history of time. And so for many there was kind of a reclaiming of themselves and their identity in this in this rejection of the idea that their hearing loss was a defect and I think that's important to remember, that I have to remind myself about that when people get kind of upset about, implants as there was a real empowerment that came with rejecting that idea. Yeah, and we should also say there's also this idea of capital D deaf community. And so that like if you see that written that's generally a signifier of people who typically don't use Cochlear implants and and are proponents of sign right my and then if you would say you're deaf with the lowercase D that is a little bit that would be more like indication of using a cochlear implant or hearing aids and being a little bit more connected to the hearing world.
Jason: Yes, correct. Yes. There's actually a movement of right now that's a called the deafhood movement and they're trying to move away from that. It's kind of like a polarizing approach to that miss that there's this big D in a little d/deaf just because of there's so many people that ride that middle ground much like myself right now.
Colleen: And now that's changing. Yeah, that is interesting. I'll have to look into that that, is it the deafhood movement?
Colleen: So for some when Cochlear implants began to become more popular, there was a strong movement within the deaf community that that really rejected it and kind of like as you were saying on these terms that like my deafness isn't something that needs to be fixed and I don't have to change to accommodate myself to the hearing world
Jason: and there was also like a lack of people advocating for use in sign language very often people from hearing backgrounds would go in there and they would say in order to be successful you need to do this, that, and the other thing and they wouldn't give any choice to the deaf people. And so, you know, even when hearing aids first started coming out initially there was this overall polarization because people who are involved in the deaf Community saw this as a threat to their culture to their way of living because it was seen as a another fix for deafness and hearing aids, oftentimes forced on people who didn't want to use hearing aids and that's kind of how it evolved with Cochlear implants. Any time you get a new technology that comes out or a new way of looking at that - or I'm trying to think about explain it like getting involved in providing some kind of “a fix” to try and solve an issue, there’s resistance from the community, but that's not because they don't want these changes because it's being imposed on them.
Colleen: Right. Right. They see it as there's a lack of choice in the matter, which I can totally understand. And also I recognize to the feeling that, like as I see my son and his peers who have grown up with this technology being extremely prevalent, my son doesn't sign and while he went to a school with other kids that had Cochlear implants and hearing aids, doesn't have a lot of exposure with that capital D deaf community. And so I do understand that the fear of as this technology becomes more prevalent. It it lessens and takes away from that community of people who, who are not using the technology and then their worlds kind of get smaller and I do understand and I'm sympathetic to that as well.
Jason: And kind of an interesting note put this whole conversation to is that when I first started going to UWM, I was involved in all these classes and I started you know for me, I mean my entire existence up until college it was really spent an isolation and I didn't have an easy way to connect with people, you know communication was very oftentimes difficult for me and I started learning sign language myself and
Colleen, was this, sorry, was this before you before you lost all of your hearing it was still very isolating when you had just the hearing in the one year.
Jason: Yeah. Yeah. I mean it was pretty much some that followed me through my entire life. And like I said, sometimes I would do really well like it be able to talk on the phone or watch TV without captions and then I would have a fluctuation in my hearing and it would go down to like I couldn't even talk to my mom on the phone. Yeah. Yeah, I would have to have captions on the TV and I would struggle with conversations.
Colleen: Yeah got it.
Jason: So when I went to college, I was meeting all these people and I felt like I started coming out of my shell. And I felt like somebody for the first time in my life. I understood what it was like to be me and it understood, you know, the hearing loss component and that I didn’t, I didn't feel so isolated in the world. And then I started learning about you know, the negative perspective perceptions of Cochlear implants. And you know, I'll be honest with you. I I totally got wrapped up in the whole anti-cochlear implant movement and I saw it as a very bad thing and I felt like people who talk to me about Cochlear implants. I actually had somebody that told me that it would improve the quality of my life and I remember getting so mad at her for saying that and I said, I've got a pretty good life. I've got lots of good friends, you know, I'm going to college and using accommodations. I'm learning sign language. I feel like I'm blossoming for the first time in my life. At that point, I had met my wife I had this great internship, you know, finally earning money for the first time in my life, even though I was still in college doing this internship and I felt, “Don’t tell me that I'm going to improve the quality of my life because that's not true.”
Jason: because I already feel like I'm on the path to success and I don't need a cochlear implant to make me successful.
Colleen: Yeah. Yeah,
Jason: And so it did feel to some extent to that but that was where I started learned that there’s, there's different ways of approaching it there's different ways of talking about it that we can obviously get into it.
Colleen: Oh, yeah, let's talk about that. So what then I think it's really interesting to hear that you had a very negative response to that and so I'm curious what changed or when did that change or how how did that change for?
Jason: Sure. So I met my wife in college and we actually met at a deaf chat at Starbucks coffee and she's
Colleen: your wife, your wife is hearing right?
Jason: Yes. My wife is hearing things. I always forget to throw that bomb like this hearing. She's learning sign language and I was also trying to learn sign language and what ended up happening was, you know, like we could go anywhere, we could have conversations in sign language and you know, she worked for the Milwaukee Admirals and she would be out on the ice or she’d be down in the tunnel or something like that and I'd be sitting up in the stands and we could have a conversation from across the stadium because we can see each other. Yeah, and I thought that was amazing. You know, I’m a very strong advocate for sign language. I love sign language. But then what was happening is I go over to her house for family events and stuff like that, I would go over to her house and she's got a rather large family. My family is somewhat big but some people in my family knows sign language and I felt like I would become all the sudden socially withdrawn because nobody knew sign language and I struggled a lot even with my hearing, at this point I had already lost my hearing like completely. and I you know people would try to be patient with me and they write back and forth.
Colleen: Is that how you mostly communicated was writing writing messages back and forth?
Jason: Yeah. Yeah, the people who did know the rudimentary sign language that I would be with and it would draw the conversation out. And so as a result, I would just withdraw. Yeah and what really got me thinking about it was that my best friend would come up to my my wife's dad on multiple occasions and they would sit there for a long length of time and they would have a conversation and I was so jealous of that because why should my best friend be able to go and have a conversation with my wife's Dad when, you know my future wife, I can communicate with her but I had to do some other medium and I just felt like so broken about that and that I felt like there was something that was missing, you know, I had this connection with the deaf community in this deaf connection with people who accepted me for who I was and stuff but I didn't have that connection with my own family. My wife's family.
Colleen: Yeah. Yeah. How did your wife feel about your, your kind of tiptoeing into the cochlear implant world?
Jason: My wife has the patience of a saint.
Colleen: She’s pretty awesome.
Jason: So incredibly open-minded about everything. She never would impose her beliefs on anybody else and she's very kind of take it as it goes. Yeah, and as I was discussing the process of Cochlear implants, she just she kind of acted like a sounding board for me and she whole philosophy was pretty much just do what you need to do and I support you 100%
Colleen: Yeah. Yeah. What about your friends?
Jason: That was that was a little bit more of a complicated thing. Yeah, as you can imagine a lot of my friends were deaf. A lot of my friends went to the same program that I did and a lot of them had the same perceptions of Cochlear implants as I did and so I was actually not very forthcoming with my initial thinking's about getting a cochlear implant just because I was so afraid of what the backlash was going to be. You know, like like I mentioned the first time in my life, I have people who accept me and you know, I wanted to be respectful and so I was really afraid to start asking people about what their perceptions of me getting a cochlear implant would be. Yeah, so I kind of started putting The Feelers out there to some of my closest friends and and explaining things and stuff like that and it was actually rather eye-opening for me because believe it or not, I would say the vast majority of my friends actually supported my decision to get a cochlear implant. And it was just so incredibly surprising to me because they said you know, they knew what my background was. They knew that I had a respect for the culture. They knew that I'd gone and taken those steps to learn the language and you know all that other stuff and that it was a very deeply personal decision for me that was based on my history of being able to fit into the hearing world that I was now kind of shut out. So this is what it was. There's a few people that didn't support it, but they were also very respectful about it.
Colleen: Got it got it. What was like what kind of things did people say when they were giving you push back against or maybe we're not as supportive.
Jason: Um, I think they would ask questions. Like why would you do something like that to yourself? Very often it would be targeted at it.. there’s this general consensus that surrounds children and the implantation of Cochlear implants and it would often get deflected to well if you had a kid would you do this? There were some negative reactions that I got from people who didn't know me. Do we have time to share a story?
ColleenYeah, for sure.
Jason: I was, I was in Philadelphia with my wife for a vacation and I had one cochlear implant at the time was actually after I got my Cochlear implants and it was just my first one. Like I said, I have two of them now. The nice thing about being deaf is you could go anywhere in the world and you can meet any other deaf person doesn't matter what country they're from and you can have a conversation with them. So ASL is not universal language, but there's you know different countries have their own sign language, but there's like gestural things so you can actually have conversations from different countries for people of different countries and using kind of rudimentary sign language. It's called it's called gestural sign language. It's a little bit more difficult. You have to kind of explain things a little bit more through motions and stuff, but it was really good. So I met this guy and we ran into him and his girl from that were there and I don't remember what country they were from but they knew about third basic level of American Sign Language and we're also using just roll sign language. And so we have this big conversation. I think it was probably five minutes into it and I turn my head to look at my wife and they saw my Cochlear implants and almost immediately the conversation stopped. This guy started lecturing me and saying like, “you need to take those things off and that's not okay” and just basically put me on blast. Yeah, and I didn't know what to do. I I kind of recoiled because I was having this great connection with this person and then all the sudden things just changed all because of some piece of technology that I had on my head, you know, and I was floored.
Colleen: Yeah it is. I remember the first time we encountered that but we were at this AG Bell convention, which is kind of a by it's every other year and it's a big convention for its really now mostly educators and therapists for the deaf and hard of hearing but Liam and I were at this convention and there were protesters outside of the convention hall, which is pretty common. This is a big convention and it's geared more towards listening and spoken language and there were a lot of protesters and it was the first time where I was like, oh gosh, like I had kind of known that but I hadn't really experienced it. I was walking with Liam and there was a woman and she saw his implants and she started to kind of sign to us and to him and I didn’t, I just was like, I you know, I didn't want to get into it. And so I just said he doesn't sign and we kind of kept walking but it is it's I you know, I knew I could tell what she was thinking and I knew and I could see their points but it is a really it's a hard thing when it is a very personal decision to have someone who you don't know have really strong feelings about it.
Jason: I thought I should clarify to about AG Bell like maybe some that I didn't talk about before is like I think that there's there's definitely a polarizing effect with the AG Bell but you know somebody who's kind of seen both the sides to like, I don't think that this is my personal opinion. Like what I've read about it AG Bells intentions were not to completely rid the world of deaf people and he didn't hate it that people if I remember correctly, I believe it was AG Bell, but I think he actually had a deaf daughter.
Colleen: Oh, wow. Okay,
Jason: and it was somebody in his life, maybe it was his wife or something like that. And he really was trying to find some kind of a solution got it that was going to allow his, now that I'm thinking about it, I think it was his wife or Deaf daughter or whoever it was to be incorporated in the hearing community. So his intentions I feel like we're good, you know, it wasn't about, like, eradicating things but then because of all the stuff that happened as a result of it. I'm sure he was a member of the oralist movement. So it was all about moving away from sign language and I do more to an oral approach and that's what the AG Bell Foundation is all about nowadays. Right? Right. It's a I think that's totally and completely. Okay. I think you can have these two different fields of thought, as long as you're respectful about them and as long as you're not forcing people into one camper, they are other and you're allowing them to make those decisions for themselves.
Colleen: Yes, and I completely agree and that has always been my frustration with the people that are very against Cochlear implants is that I don't care that you don't have a cochlear implant, but I don't appreciate the judgment about the decision that my family made for my son. You kind of mentioned the, particularly with kids, the controversy around Cochlear implants with kids. So do you want to share a little bit about why that is even more controversial for people?
Colleen: which I should specify it to say nowadays kids as young, I think the youngest has now been like four months, four or five months are being implanted. The FDA approval is for about is 12 months. Obviously some doctors will do that earlier, but I would say around the average between 6 and 12 months is usually when we're starting to see it now.
Jason: All right. Yes, there's a couple different components that are that are trying to be considered when it comes to children. The first of the components is a pain thing and it's about how traumatic the surgery that cochlear implantation used to be. So in the past the surgery of methods for Cochlear implants used to be, I wouldn't I wouldn't go so far as to call them traumatic or anything, but they weren't what they are nowadays until kids who had Cochlear implants. It was more of a painful experience. But like when you're a little kid like I think they say something about those pain levels that you don't remember them and all yeah all that other stuff and the surgery nowadays is actually from my perspective, I feel like it's relatively mild.
Colleen: So it's I mean, it's outpatient. There's minimal, I mean, you can't see Liam scars like in his ear crease. You can't see anything and and I do think kids especially bounce back way faster than the adult recipients I’ve met.
Jason: For sure, for sure. The other component that's involved with it was that it was all about choice. So it was about the Medical Society imposing their beliefs on fixing deafness from a medical perspective on to the people. So like most deaf children are born to hearing parents, right? And the people that they're consulting with, they’re doctors and doctors see this medical model of well, it's a defect. It's something that's got to be fixed right away and they're not educated about the values of sign language and learning about deafness and about Deaf culture and being able to be successful as a young person. It’s these scared parents who go into the doctor's office and they’re looking for some way to make sure that their kid is going to be the most successful in the world and oftentimes the medical model is that it's something that's got to be fixed.
Jason: And so it's taking the choice of the kid away from that kid and an imposing that belief on them. So a lot of people who were within the deaf Community see that as a form of genocide of the deaf community. I hate using that word genocide because that, that's how I've heard.
Colleen: No, I get it. I totally get it.
Jason: There’s going to be less deaf people as we progress through this technologies are going to be going in there and you know stopping it before they even have a chance to develop that sense of identity.
Colleen: Right, right for sure. I realize this is a loaded question because you're answering it to a mother who did implant her child before he probably could have chosen that but I am curious and I won't be offended either way, what do you think about that personally?
Jason: So I would say, I have a three-year-old son myself and as somebody who's gone through it before, who's gone through the surgery myself, I feel like from a pain level I have no issues with cochlear implant surgeries. I would totally do it for my son. I think even from a cultural perspective. I would totally allow my, I shouldn't say do it to my son. But but allow my son to get cochlear implant because I feel like like, even though I got Cochlear implants and even though people who are like your son Liam who has Cochlear implants and has known Cochlear implants for their entire lives. I feel like the deaf side of things that, that American Sign Language component is going to call to them as they get older. For me being hard of hearing or deaf or whatever you want to call me growing up, even though I used hearing aids and stuff like that, I felt like there was a big part of me that was missing and I felt like not a lot of people can understand what it's like to go through those things. And when I went to college and I started learning about deafness and I learning about sign language. I felt like I got the second half to myself that allowed me to really comprehensively understand who I was as a person and where I fit the world. I feel like it's entirely possible for even if this these kids have no exposure to ASL or Deaf culture or anything. They're going to have this longing for trying to figure out what it’s about because when you take your cochlear implant off, and they do come off many people don't realize that it's a simple matter of taking your magnet off and you're deaf.
Colleen: Yep, every night before we go to bed. That's what happens.
Jason: Yeah, so they still have that connection to deafness. It's not fixing the deafness and you know, they're still struggling with different situations, different communication environments, background noise, all that other stuff. You're still dealing with the deafness component and that's always going to be there. So going back to the community and, and learning about those things, I feel like that's our opportunity, and I identify as the deaf Community too, but that's our opportunity to really be there with an open mind and embrace that aspect of things and say this is what you've been missing out on. And allowing people to come to those realizations and build their own genuine connections with deafness.
Colleen. Right. And that's interesting because I do, I do feel that tension that my son kind of straddles two worlds in a lot of ways. He’s not really, like, he's deaf obviously, but he lives in a very hearing world. He goes to a mainstream school with all hearing kids and so on the surface level most people would think that it's exactly the same for him and they don't realize how much harder he's working to hear. And on that same token, because he has Cochlear implants, because the majority of the way that he engages with the world is through the use of hearing and spoken language, he also doesn't fully exist in necessarily the Deaf culture, capital D Deaf culture world. And so it's interesting to hear you even say, like, there's something that will call him back to that and I've wondered what it will be like for him as he gets older and how, you know what choices he will make for himself. I also know that there was, I don't think we ever really considered not getting him a cochlear implant but I did have that tension of am I making a choice for him that he will regret later that he will be unhappy with later? And I did feel that I did really feel that deeply. It didn't obviously affect our decision, but I think the other thing for me as a parent a hearing parent to a deaf child is knowing the history of what families like ours looked like before this technology existed. Youu know way back in the early 1900's it was not uncommon for Deaf kids to be taken away and live with deaf families or to go to boarding schools. I remember when Liam was three, that's the age when the school, the services get taken care of by the school district. And so we have this you have this big meeting and you get your IEP and you know, it's a whole thing but one of the things as we were going through all of the things, one of the things they said. She was like, “I have to ask this she's like, but do you want your son to go to the Illinois boarding school for the deaf and hard of hearing?” and I was like, “I'm sorry what” and it and he my three-year-old could have gone to a boarding school where he would live at the school and he would be you know educated and taken care of by deaf people and and would not live with us anymore. And I was like do people actually do that?? She said actually it's a lot of the rural families maybe send their kids there for the day. It's down state but some families do and it was just a sobering kind of reminder that before this technology existed my connection to my son was not seen as valid and by the same token, I think the other side of that coin is that the people in the deaf Community thought that I wasn't capable as a hearing parent to parent my kid and so he was better off in a deaf family. That is just, like I can't even imagine. So I think I think there's a flip side to that coin for parents, for hearing parents of deaf kids. And for me what this technology means is that my family is whole and intact. My son is hearing everything, even the stuff that isn't directly spoken to him. Every I love you every you know, those little things that it's just as important and so, you know, I can get emotional when I talk about this. For me, for a hearing parent that decision was really primarily about making sure that he was connected to the world that we lived in and that he didn't have to live outside of the world of his family
Jason: If I can add to that that's an important side of it too. Is that like it's and that's where I was kind of going with my thought about like allowing my son if he ever was deaf to get a cochlear implant is that it's so important that language and speech understanding acquisition phase from a neurological standpoint as like what between 0 and
Colleen: I think in five, I think or three maybe?
Jason: I think maybe even more narrow than that. I think 0 & 1 or 2 or something like that. Being able to get all that information so that they can understand it can make sense of the cochlear implant. It's so crucial but still like and parents can even go take that extra step further and teach their kids sign languages as they are getting older so that you can communicate when one of their Cochlear implants die or you know, having different methods in order to be able to communicate. But it's so important if you want your kid to be involved in both worlds, then you have to give them the tools and have to give them the tools during that opportunity of language acquisition.
Colleen: I met a man young man recently who grew up very much like Liam, he didn't sign he wore Cochlear implants and in college he started to get into ASL and the deaf community and now he's really sort of doing both and he's signing and he sees sighting as really important, which was my next question for you- would you say that all deaf people whether they wear Cochlear implants or not, is there a really some value and benefit to learning sign language? And is that something that you would encourage people to do?
Jason: So you're asking if I think that people who have Cochlear implants should learn sign language?
Colleen: Just like someone like Liam, who he's never really needed to learn sign language, you know for the first eight years of his life. We did a little bit when he was first diagnosed. But is that something like would you encourage parents or just anybody who has hearing loss that wears Cochlear implants, would you encourage them to use and learn sign language
Jason: In a nutshell? Absolutely. Just like you were just recently talking about a moment ago again, I work for college and so like one of the most surprising things that I see is actually students who either use hearing aids or Cochlear implants, I think it's more common with hearing aids, but we do see the Cochlear implants as well. Is that they've been users of assistive technology for their entire life and as they get older and they come into college they started meeting other people deaf people and we've actually seen people take their hearing aids or Cochlear implants off and stop using them around their deaf friends and they developed this whole new sense of…. I’m sorry I’m going to get emotional about this because it's like I understand where it comes from. They’re learning so much about themselves and learning different ways to communicate, different ways to live and it's like a swinging pendulum, you know, like on one side they've experienced this one thing and they know that very well and then they come here and their very existence is in question, not necessarily in a bad way, but that they're learning something that's so fundamentally a core part of themselves and they see this other side and they they can take their implants off or their hearing aids and they can communicate using sign language and have developed these connections with other people and sometimes they completely stopped using them. But then later on come back to it.
Colleen: yeah, it's so interesting. I mean, I like I'm really glad you're saying it and you're saying it in the way that you are because I will admit that I'm sitting in a lot of tension hearing that as a as a parent who has worked so hard to give my kid access to sound. I think it will one day be really hard to allow them the choice and the freedom to choose not to, you know? On a very rational level. I think that you're totally right and that is really great. And yet it also terrifies me as a parent.
Jason: If you add that, you know, even back to that question to like if you expose your kids to sign language or you learn even just a little bit very basic level of sign language and you run into deaf people on the street and you try to communicate with them, I feel like that pendulum is going to swing a lot less. It's not going to deviate quite so much. They’re going to see that there's other default adults out there. There's other ways of doing things. And so when they are exposed to those, hopefully it won't be the first time when they go to college that they've never experienced that before and they're not going to swing quite so wildly. They're going to say hey, this is something where I also have a foot my world and their world and I can navigate that line much more, I don’t want to say effectively because I think it's a normal part of development processes that you want to be able to expose yourself in those uncomfortable situations, but it's just not quite so wild.
Colleen: Right. Well, again, on a very rational level I can even recognize for you the emotion in being really happy that somebody is experiencing that connection to a different part of themselves or feeling like there's like a little bit of a lost piece missing. It's just so interesting how much of our identities and our self assurance comes in our ways that we communicate, you know what I mean? For me to think of Liam rejecting the hearing world is this rejection of of me and of us and of our way of communicating and I know that it's not, you know, on a rational level. I know that it's not but on a visceral level… it's just really fascinating. It's really interesting to think about how deeply seeded this is in who we are and how we communicate with people and are able to or not able to communicate with people. It's just it's fascinating to me.
Jason: So on that level of like being able to connect as a person with hearing loss or whatever, when I first started going to college I signed up for a Deaf culture class knowing nothing about deafness. And always knowing like what I had known. This is again back before I got my implants and I was still dealing with hearing loss and stuff like that and I went to this deaf culture class and they were talking about how deaf people communicate with each other in a vehicle like in a car. They were talking about, you know, when it gets dark out. Obviously you have a hard time seeing other people in the car because dark so if you're using sign language it is difficult. And so one of the coping mechanisms that they used for communicating in sign language was to turn the dome light on. And I remember sitting in class, this gets me every time, it makes you super emotional because I sat there and I was like, I almost started crying. My teacher asked me what's wrong and I was like, I was hard of hearing and when it got dark out I couldn't communicate with people in the car cause I couldn't see their mouth. Yeah, so I think about Big D and Little D deaf and to me it's really just a different page from the same book. Like even though I may not have seen other people signing, I understand the struggle of what it's like to struggle for communication. I remember calling my mom that night and I was sobbing because I was like, why didn't you teach me about sign language? Why didn’t you teach me about Deaf culture? Why didn't I know that there were other deaf people out there because I could have avoided all this inner turmoil and questioning myself and wondering if I was normal just by having that exposure to it.
Colleen: yeah, that's a really great place to, as we kind of think about wrapping up, I want to ask you to that point maybe one word of advice to people who are wanting to bridge that gap between Big D deaf and Little D deaf, between hearing world and the deaf world? For parents like me who like who want to raise our kids so that they don't go to college and have this crisis of identity, what are some suggestions that you have of how we can really bridge this polarizing issue?
Jason: I think it's important to be open minded and to be flexible and to know that if you're not uncomfortable, you're not learning.
Colleen: Mmm, that's good.
Jason: If there's an opportunity for your son or your daughter whether or not they have Cochlear implants or they're involved deaf community or they know sign language to give them those kind of opportunities and to explore those opportunities. And allow kids, especially kids, to make their own mistakes and to learn in what situations one piece of communication works. Well, you know, like my Cochlear implants don't work well in every situation, like when I go to a noisy restaurant, I struggle and if I'm with my wife, I feel like I have that sign language to use as a backup, but I just feel like it's important to be flexible with your communication too and be able to adapt depending on what situation you're in.
Colleen: Yeah. Yeah, that's good. That's all really good. Thank you so much for everything you shared. I mean you are our role model for Liam and that is another thing that I've shared with you before but I think it was actually your friend's mom that I met at a Gala we were all at and she was talking about her son who was deaf. I think he were either Cochlear implants or hearing aids, but he went to school with other kids that were deaf and hard of hearing and she said she never forget the day where he was, maybe I don't know six or seven and he's like, “oh when I grow up I won't have to wear these.” And she said, “why do you think you aren't going to need your cochlear implants when you're an adult?” He said, "because adults don't have Cochlear implants!” He was this sweet little boy who had all sorts of other friends that had Cochlear implants, but he didn't know any adults. So for me, I like heard that and I was like, Oh my gosh! So now I am like all over any adults I know, I'm like, “Liam this guy has cochlear implant. He's a police officer, you know? He has a cochlear implant and he does this and that.” Just to help him see that there are adults that wear Cochlear implants and there are deaf adults that are doing great things in the world. And so personally thank you for being one of those people for my kid and thank you for your work. I'm gonna share your Ted Talk The Art of Accommodation- we’ll link to that in the show notes as well.
Jason: Thank you
Colleen: because I want everybody to see that. We always wrap up with two questions. They're always the same. The first question is what is your favorite book?
Jason: I was going to look it up right before I got on because I forgot what the title is but it's pretty much all of Malcolm Gladwell's books. I'm not sure if you're familiar with them.
Colleen: Is it the Tipping Point?
Jason: Yes! The Tipping Point thank you. There you go. And there's also another one called Outliers. Yeah, I enjoy those.
Colleen: Yes. Those are both good. I have heard great things. I think he has a podcast, actually. And finally, what is your secret special skill? What's the thing that you do really well that people don't necessarily know?
Jason: That’s a hard one because the only thing that I can think of is something that everybody that knows me knows is I brew beer.
Colleen: Well, that's good. That's a good secret special skill though.
Jason: I’ve been doing it for about 12 years and I've recently started entering in the competition. So they’re doing really well with the competitions and I just love trying new things and experimenting with flavors and stuff.
Colleen: Yes. That's awesome. And I have tasted your beer and it is very good. I will say you have a gift, you have a gift. Well, thank you so much for being here with me today. Thank you for sharing your story. And for the work that you do. I think you are just such a good bridge. I was so impressed today with the ways that you can see all aspects of this and you give people a lot of freedom to just play around with it and explore and see what fits and what feels good for them in kind of the spectrum of Cochlear implants to Capital D Deaf culture. So I just I'm so thankful that there are college students in the world that have you there to help them.
Jason: Well, thank you so much too. It’s an absolute pleasure knowing you and working with you and hopefully my voice is going to sound just as good as yours.
Colleen: Even better, even better!
Colleen: Obviously this controversial issue hits very close to home. I have no regrets about our decision for Liam but talking with Jason made me appreciate both sides of this dilemma even more and I'm so in awe of how well Jason walks that line of respecting others opinions and needs while standing confidently is in his own decision. I think even if you don't know anyone in the deaf community or with a cochlear implant, there's some big takeaways about how deeply our identities are rooted in our communities and how our communities are often shaped by our similarities. I wanted Liam to be a full participant in my hearing community, Jason wanted to be connected to his deaf community and it's often hard to give others the space to go between worlds. Seeing this play out in the deaf Community is a reminder of how we do this to people who may want to break out of a community that's been founded on a political ideology or shared belief.
People have strong opinions about Liam and Jason's Cochlear implants because sometimes a different opinion feels like a threat to our own. I think we can learn a lot from Jason about his willingness and ability to give others room to make their personal choices knowing that when those choices are different, they don't say anything about the ones that we have made ourselves. Thank you to Jason for your thoughts and time.
Closing: This has been another episode of A Year of Listening. Thank you for listening. For information about today's episode or our guests. You can go to the show's website ayearoflistening.com. A Year of Listening is created and produced by me Colleen Powell. I'll be back next week and until then, let's hold people more closely than perspectives. Have a great week!