Episode 5: Between Two Worlds - Life as a hard of hearing teenager in a hearing world.

Host Crystal Hand interviews a hard of hearing teenager living and going to school in a hearing community.  Not fully hearing, but not fully deaf - guest Luke Hand talks about his experiences trying to navigate this strange landscape.  Covering topics like how he manages school and athletics, facing discrimination, learning to advocate for himself, and his complicated relationship with the Deaf Community.   

Luke also discusses his desire and hope for others like him to find a community and how he started a social media page just for middle school and high school students so that no matter where they are they can have a community.  To join this private group, go to:  https://www.facebook.com/groups/powerofhearingloss

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.   If you are just tuning in for the first time, I encourage you to go back and listen to some of my previous episodes where we discuss an array of topics from all different perspectives.   As I explained in my short introduction to this podcast titled episode 0 who am I and what is the purpose of this, the topics surrounding the deaf community are very personal to me.  I not only work in the field helping families with deaf children I also am the mother of two deaf and hard of hearing children myself.   In all my episodes I talk about some of our experiences as a family.   After many conversations with my children about things I should cover in this podcast, I decided that it was time for me to have one of them on so he could speak for himself.   Today I will be interviewing my son Luke Hand.   And before anyone asks no I did not coach him on any answers to the questions I'm about to ask.   Luke is 18 years old and was identified as having a hearing difference at two and a half years old.   He is the reason I was thrust into this world of deafness, and him and his sister are the reason I care so much about this community.   Luke uses speech as his main communication mode and identifies himself as a hard of hearing not deaf teenager.  And today we are going to get personal and discuss his experience as a deaf and hard of hearing teenager.   The successes, the hardships, the struggles, and the overall reality of living with hearing loss today.   And let me warn you it is quite different than the older deaf generations and yet there are similar themes.   So, without further ado, let's get started. 
 
So, Luke I wanted to have you on here because I feel like as older adults we tend to speak about teenagers and sometimes speak for teenagers about what's going on in your world.   And truth be told, deaf and hard of hearing adults that grew up 20 some years ago, they had a very different experience than what you have.   So, I really wanted to just kind of have you on here to give a different perspective of your age group and what it's like to grow up hard of hearing.   What it's like in school and another thing is the difference between being a capital D Deaf teenager and a teenager that is considered hard of hearing that doesn't quite necessarily identify as Deaf.   So, there's a lot to talk about here and I wanted to kind of give you an opportunity to really chat about a lot of hot topics especially um both in the hearing and the deaf community.   So, let's get started.   So, you are very successful in school you get straight A's, you have recently won speaking and speech contests, writing contests but it wasn't always that way and there's been a lot of times where you really really struggled.   So, what are the things that make you successful in school academically?

Luke:
So, I think the main factor is uh parents and family do affect a lot.   I was able to learn a lot of my reading skills and writing skills from the school but also from my parents as well because they helped me focus and increase my work dedication to be able to do school tasks that I definitely would not have been able to do without their support.   The other things that I would say contributed to my success were teachers in particular that really set the expectation high for me.   I met a lot of teachers that they're more going with the flow and whatever goes your way goes your way.  If you fail a test you fail a test but I also met a lot of teachers that it was like no, just because you failed a test doesn't mean that you're a failure.   You just go another route.   You are improving yourself at all times. 

Crystal :
So high expectations, family support.   What kind of accommodations do you have at school because you are in a mainstream regular neighborhood school and you don't use a sign language interpreter because you don't use sign language so what kind of technology or accommodations do you have that help you in high school as well as every other grade that you've had? 

Luke: 
So, when I started school, I had an IEP which is a list of the accommodations of what I would need during school.   It usually develops as time goes on, so some of these things that I have in my IEP is- all teachers are required to wear a device that helps me amplify my hearing so that I can understand them better.   I am required to be provided with skeleton notes.   During the videos, when teachers like to show videos, closed captions is a really big factor for me.   Other things in that, I having an IEP for a hard of hearing student or the deaf students it really just evenize the playing field. 

Crystal: 
So, let's talk about what makes it really difficult with academics.  So, um in the past, you and I have joked that we always have that one teacher that every year there's at least one teacher that doesn't want to follow the IEP.   That thinks that you don't need the accommodations.   So, what in your experience has been the biggest challenge overall with academics.  Whether that's with teachers or school work or things like that.   What have you struggled with the most? 

Luke:  
 I guess what I struggle with the most for academics is constantly having to remind the teacher of my accommodations that I need.   I know that there are plenty teachers they deal with hundreds and thousands of kids every day, and I know sometimes it can be difficult but that said, you can't forget that one deaf kid in the corner about his accommodations.   It's just like, I usually have to remind them that - hey please wear your fm.   Hey please remember to turn on the closed captions and all that.   And it doesn't really make as a big deal as I put it, it's just something that I have to learn how to advocate for myself because nobody else really does that unless I were to ask for help, which I am not a huge fan of. 
 
Crystal: 
And most people aren't.   So, let's let's chat about that so we have had a lot of coaching, you and me together on how to advocate for yourself but we also know a lot of hard-of-hearing teenagers that we've come across that don't advocate for themselves and in fact really resist or refuse accommodations.   So, you have kind of learned to manage that but from your perspective why do middle school and high school students struggle advocating for themselves? 
 
Luke:
So, I think a lot of kids struggle to advocate with themselves because, - take me for example.   I really don't like being put in environments where I don't feel comfortable.   And in the past, I definitely did feel that because I had hearing aids or because I was different, I didn't fit in with the crowd and having to ask for help or do these accommodations that I needed to help me become successful, it definitely put me in an uncomfortable environment.   I had the support of or ahh really more of a forceful nudge from both my parents and also some other teachers that helped support me along the way.   Which all turned out to be a good cause because I eventually learned to overcome myself and not have to be in the mindset of someone who can't do something.   A lot of students that I met struggle for advocating mainly because they don't think that they need help and just being put in an environment where we don't like is a huge negative factor on our side and we would do anything to get out of the situation.   I think if we teach the mindset of advocating for these teenagers and helping them overcome those mental mind blocks that they have then it definitely can create someone can be in an uncomfortable situation and be okay. 

Crystal:  
So, you're saying that a lot of them don't like to be uncomfortable they don't like that attention on them. 
 
Luke:
Yes

Crystal: 
when you're asking for things especially if you already feel different

Luke:
yes. 

Crystal:
Okay so let's talk about socialization in high school.   Do you find that there is a lot of bullying in school because of your hearing loss?   Is there people who make fun of you for having accommodations and things like that?   Because I think that's kind of what you were saying is that a lot of deaf and hard of hearing kids are afraid that if they stick out and ask for these accommodations that they're gonna get made fun of.   So do you have experience with that?  Do you feel that that's something that happens? 

Luke: 
I don't necessarily have strong experiences in bullying, although I will say that I have talked to kids that are like me that have experience in bullying.   I understand that it's a very difficult topic to talk about because nobody likes being treated differently in a negative aspect.  The deaf and hard of hearing world, specifically we focus a lot on the negative aspect of our encounters or experiences with the hearing culture.   Like for example, sure from time to time I would get some teasing about how like “you can't hear this” or stuff like that.   Sometimes I would face the discrimination where a group would be talking about a certain topic, I didn't happen to hear them correctly and then they're like oh never mind.   Don't worry about it.   It just creates a negative perspective for me because now to me personally now it's saying that well I must not be important enough to hear whatever it is what you wanted to say.   So, for hard of hearing and deaf, just because that we can't hear something doesn't mean that we don't feel excluded.   I have a lot of situations, mainly group situations, where it's just I always been kind of in the background, I never participated as much in the conversation and I just I didn't want to.   And that's just mainly because half the time I may not hear what they're saying and then half the time, I'm an introvert, I just don't want to contribute at all.   But yes, being hard of hearing it does bring up the thought of a bullying and discrimination can be done indirectly or directly without people even realizing it.   So, in my opinion I learned to just ignore it and move on but I can't say the same for others. 
 
Crystal: 
Okay so going along with that, teenage social situations look different for you and for a lot of hard of hearing students.   So, I remember you going to a party and coming home early and it had happened to be a bonfire.   And I remember thinking why did you leave?   That sounds like so much fun.   And you said, “well I couldn't see their mouths when we were sitting around the fire and I knew I was going to get confused and so I just decided to come home.”  So, can you kind of explain how your hearing loss has really affected your social situations and how that has affected how you handle or what you participate in? 

Luke:
Uh yes, so bonfire situation.   Yes, I knew I was gonna have a lot of trouble and I didn't necessarily want to make the effort.   Mainly with social situations it requires me to double the effort into listening and understanding processes and what they're saying compared to what a a regular hearing person would have.   So, group situations specifically it does create a lot of work on my part because I have to focus on how to overcome that.  So, my preferred social situation is maybe a small room, a good lighting area and then like maybe talking to possibly three or four people.   Compared to going to a large group that's maybe 10 or more and then having everybody talk at once, talking over each other instead of talking one at a time.   I gotten used to the habit of, specifically with my family, of sitting at a dinner table and then everybody talking one at a time.   Compared to those large group situations where you got two or three conversations going on and then somehow everybody gets back together and splits apart off again without any warning or indication.   That just creates a lot of complication.   I had to learn a lot on how to overcome those challenges.   But some of the times I'm just like I don't want to put in the effort so I rather just go home. 
 
Crystal: 
So, it's not a personal thing to other people it's - I'm just too mentally tired to deal with this. 

Luke:
yes yes. 

Crystal: 
So, thinking about the dinner conversations, so you're right we have gotten into the habit because both you and Samantha are hard of hearing and deaf.   We learned very quickly that we needed to talk one at a time so that you both could understand us.   A lot of families don't do that and one of the things that we have learned is that the four of us, we do that, but when we get large family groups together - our extended family, aunts, uncles, cousins, all of that stuff - they are not used to those situations and so that is when we have these big conversations.   Just like you said, where a couple people are talking all at once.   And I remember you describing it as watching a ping pong match with five ping-pong balls and you're supposed to keep an eye on every single one of them and it gets confusing.   So, one of the cool things about having a sibling that is also hard of hearing or deaf is that you two end up sitting in a corner together often times just talking to yourselves and most of the time other people don't even know what you're saying.   But that is a coping mechanism that you and Sam have figured out within our own family dynamic.   And I think that's something that a lot of people don't think about is, in your own family dynamic there is sometimes uncomfortableness because you feel left out in those big conversations.   Because other people don't know to stop and repeat or speak one at a time.   And you mentioned earlier when someone says “never mind”, I never realized it but both you and Samantha have said you know that is like the rudest thing that you can say to a deaf and hard of hearing person -   is never mind or it wasn't important. 

Crystal: 
So, let's move on to athletics.   Okay so you are an athlete.  You are a swimmer and actually a pretty good swimmer.   You just recently got back from state championships.  You've been swimming for a while you've also played other sports in the past but swimming has been your main sport.   So, what accommodations have you had to have over the years in order to make that happen?   Because a lot of families that I talk to their biggest concern is - will my child ever be able to play sports?   Are they able to do all of the things that a normal child does?   And so, I always tell them, yes, they can with accommodations.   So, what things have worked for you with communicating with your coach?   Because with swimming you can't hear anything when you're swimming and you can't hear in in the pool area at all.   So how do you manage that? 

Luke:
Well from the start of it, it definitely has been a lot of trials and errors.   I would definitely say swimming is a harder sport for hard of hearings and deaf because we are constantly being placed in an environment where we have to take our hearing aids out to swim in the pool since they're not waterproof.   So, I really had to learn how to communicate with my coach of what are the accommodations that I need.   So, during my practices he would write on a big chalkboard that they have or maybe sometimes the whiteboard, of what are the instructions or work sets that I would need to work on.   And then anything that if I had something wrong with my technique or if I'm not doing a flip or if I'm not doing my start correctly, then he'll come up to me he'll write something on his phone or on a piece of white board and say okay you need to work on this and that.   During the meet from the beginning, there was a lot of trouble.   One of the coaches that I had used to uh take a ball peen hammer and whenever they start the buzzer and then tell to go, he would time the ball beam hammer to hit on the side of the block which makes it vibrate and then I would push off.   Well in the future that didn't really work because the ballpeen hammer top flew off and fell into the water.   So, we figured that was a bit too dangerous and decided to take a different route.

Crystal: 
And it was also illegal once you got into high school.   So that was something that you did when you were younger

Luke:
yes,

Crystal:  
But in high school you weren't allowed to do that. 
 
Luke: 
Yes, so instead there's hand signals that were used which is on your start you get your hand raised up, on your mark your hands to the side, and then go and your hands on them down to the side which worked out really well for me for the most part.  Of course, for swimming it did still create a disadvantage because I would still be like maybe a second or two late off the block.   But these are the accommodations where I learned to use and eventually overcome.   So, I believe that any hard of hearing or deaf student can play any sport that they want, you would just need to work out what things that for you are going to have a disadvantage in and then how are you going to overcome that. 

Crystal:  
Yeah, and then of course there's the light.   So those people who don't know, with swimming when the buzzer goes off there's a flash of light, so that is something that you were able to use as well.   So going into that, let's talk about what happened at state championships.   And this kind of goes into the concept of intentional and unintentional discrimination.  So, we're at Pennsylvania state championships. We are at a division one school, which is supposed to be top of the line, supposed to be one of the best swimming schools in the state.   And we get to state championships you get up on the block for your first individual race and the first thing that happens is that you've got three different officials doing three different hand signals.   And then the light does not go off even though they were aware that you are a deaf swimmer.   This actually affected your start enough that it eliminated the opportunity for you to actually make it into the next round, into the finals unfortunately.   And so, let's talk about what was your thoughts and your reaction at that point in time.   Because this was something that you can't take back.   We can't do a redo.   It's state championships.   There's 32 guys competing for the top 16. um so you can't ask them to redo the race.  But they really messed you up because they didn't do what they were supposed to do for your start.   So, what was your thought process when you ended that race? 

Luke:
I felt disappointed and a little bit upset because to my past experiences especially for a state level championship as this, I didn't feel like there was really any organization or structure, nor that they had the proper equipment to provide these accommodations to disability students such as I.   So, I will admit that they definitely did try to fix their corrections later.   

Crystal:
Later

Luke: 
They didn't do well because they had to use duct tape and rubber bands to put the lighting system together which maybe worked half the time. 

Crystal: 
So yeah, so continuing that story, so after that first race your coach was very upset about it and talked to head of everything that that was putting on the whole thing.   They assured us that this would not happen again and long story short out of the six races that you did four of them the light did not work. So in essence they only ever really got it right during your relay.   They didn't actually ever get it right during your individual events.   So out of that whole weekend they didn't get it right until the very end.   That was super frustrating.   When you get out of the water and that happens and you are approaching your team what are your thoughts and your feelings in that moment?

Luke: 
Well, my ego side is saying that like this was a really huge disappointment.   I should be angry about this.   But approaching my team I realized that yes, I could complain about it all I want and I probably would successfully been able to say that this was an unfair discrimination.   But approaching my team, I went to states just to go as far as I as I could go.   But there were other team members that I had that didn't have the same opportunities that I did.   I had four races that I could swim, but some of my team members didn't have that opportunity and I realized like, I am a good swimmer and all my teammates are a good swimmers.   I'm really just here to have fun and support my team because that's what really matters.   My teammates were really like brothers to me.   They stuck by me over the years and we were able to improve each other a lot.   I was just happy that I was cheering them on and being there for them.   That's really what it came down to when I got out of the pool.   I mean like yes, I definitely was disappointed and upset but a lot of things in life kind of throws you that way.   This was not a new thing to me.  I definitely had gotten experiences in the past where things definitely didn't go my way when it should have.   And just reflecting on that and just saying this is just another one of these life things that they turned out.   Now it's time to move on. How could I improve myself and then how could I support everybody else. 

Crystal:  
Yeah, so when dad and I were sitting in the stand, all of the other teammates families were super upset about what had happened.   I mean they were much much more upset than dad and I were and, not that we weren't upset, we were.   But we've kind of come accustomed to it.  And even your coaches, they were to their credit, they were all over it.   I mean they were constantly in that office saying you messed up again, you're putting my swimmer at a disadvantage.   They were really really good at really advocating for you.   But it was interesting because they came up to me later and said you know we were more upset about this than Luke was and one of the things that we talked about with them was well this happens a lot.  That most of the time, we're dealt the cards that we have with having hearing loss and you can overcome and do a lot of things, but every once in a while, it screws you over.  And it's not that your hearing loss screws you over, it's that other people's either indirect unwillingness to accommodate or inability to accommodate - so sometimes it's not purposeful.   A lot of times it's not that somebody has malice towards you and they want to discriminate against you, it's that they don't actually know what they're supposed to do.   So that's part of it.  And it happens a lot.   So, in swimming it happens, in school it happens, when we go to doctor's offices- and you and Sam always have to learn how to accommodate.   Okay so technology's not working, things aren't going well, how am I gonna handle this.   

Luke:
So, I guess from all of the experience that you've had, you've gotten used to that but in general what makes you not freak out?   Because again your teammates your coaches everybody else was kind of freaking out and you were “like it's okay let's just move on let's focus on the team” 
 I definitely want to say I do really appreciate my teammates and my coaches really trying hard to to even the playing field.   But again, this is something that's not new to me.   I probably in my life, I probably always feel at least indirect discriminations in a way where they're not realizing it or providing me.   Which I could definitely be angry at the world and saying that hey this is so unfair you can't screw me over.   But I was raised that no matter what the world's gonna screw you over in some way.   How you deal with it is up to you.   You can't throw a temper tantrum every time the bell doesn't sound off right or you had a late start. 

Crystal: 
So, let's talk about covid.   So covid was difficult for all deaf and hard of hearing people in general and it's something that is like the dirty little secret.   So, because everybody was so focused on everybody's health, which was fair.   It really became acceptable to discriminate against people with disabilities during covid. 

 Luke:
oh yeah

Crystal:
And that's something nobody wants to talk about.   But we're going to talk about that.   So specifically hard of hearing, the masks were awful and the first thing people will say is well you can wear clear masks but unless everybody wears clear masks then you're still at a disadvantage because not everybody in the world was wearing clear masks right.   So, let's talk about what your experiences were during covid as a teenager that could not hear, your cyber experience and then once we went back into school and everybody was wearing masks what was that like for you? 

Luke:
So, I would categorize covid really as a nightmare for all disabilities.   For example, I used to work for a company as a cashier and during the covid time there's mandates of everybody must wear mask no matter what.   There were no vaccines created during the time and being cashier having to listen to customer like helpful service, it's it's really critical because you don't want to misinterpret what they're saying because you can get yelled at by either the customer or the manager and nobody wants to be placed in those situations.   Having the mask makes it really difficult for me because especially for people that are really quiet or have a heavy accent, those really make it difficult and it really does place me under a lot of stress because I have to work extra hard to understand what they're saying.   Uh moving away from work, cyber school during the Covid time was it was not done well altogether.   There are a lot of schools that uses zoom, which in my opinion and this is only in my opinion, is one of the worst video calls or apps to use because the closed captions don't work really well.   Fortunately, my school we mainly just used google hangouts, which had a closed caption system.   But even then, cyber schooling was still hard especially in group managing settings.   Teachers mainly use a one video meeting setup which makes it difficult because if I want to know who's saying what then I have to listen to how their voice sounds and the way they're talking and what they're saying which creates even harder work.   So cyber schooling was difficult in itself.   Academically it wasn't that difficult, socially and isolation yes it was very difficult.   There weren't a lot of opportunities to to speak to people and then when it went back to going to school and going back to face face to face there was still a lot of complications.   Especially since all the students and all the teachers were wearing a mask, then my accommodations became harder because I had to remind teachers to put on their clear mask.   And they always complained that oh it's kind of stuffy or uncomfortable and they rather wear their cloth mask.   Again, which makes it really difficult for me because now, I understand that you want to make it comfy for you but I'm sorry but I have to place you in an uncomfortable situation so I could read and hear what you're saying.   And that's only for teachers only.   That that does not affect the students at all.   So socially during the time I felt very isolated because if I couldn't understand what they were saying and they refused to take off their mask off then there wasn't really a lot of ways for me to communicate. 

Crystal:
Yeah, so everything kind of was a little crazy.   So, at the beginning I remember us feeling like, okay this is not ideal people don't really know what they're doing.   So, we kind of understood that it was a little crazy at the time.   After about a I guess six months to a year into it, both you and Sam got to the point where you actually didn't want to leave the house.   You got to the point where you said it's not worth the anxiety and the stress to try to communicate and at the beginning of the pandemic people were so afraid that when you asked them to maybe pull their mask down or slow down or repeat something they would get cagey and they would literally run away.   I do remember being in a doctor's office and them saying that they had to keep the door open because of ventilation and when I said well you know he can't hear very well you're going to have to speak up they said “well you're going to have to be okay with other people being able to hear what's going on during this doctor's office because HIPPA laws don't apply during Covid in this situation”.   Because it's more important for the doctor to be safe than to close the door and allow your privacy.   And I remember being really really upset with that and thinking this is really unfair.   You are a hard of hearing person, your personal information is being broadcast to the people that are in the waiting room, all because they don't want to close the door.   And that particular doctor was also wearing a mask and a shield so she was doubled up and she wouldn't take either one off which was really frustrating.   And so that is just one example of how it became acceptable that your rights as a person, as a person with a disability, they did not matter.   Covid trumped everything else and that was something that used to boil my blood.   And I understand, and for anybody, before anybody gets their pitchforks and wants to riot, I do understand covid was a very big deal.   It was very serious.  It was something we needed to pay attention to.   So, I don't dispute that but I think the unintentional consequence was that we made it acceptable for us to be discriminatory against people with disabilities.   And nobody wants to talk about that.   Nobody wants to say that because if they say it then we have to deal with it then we have to recognize that this happened.   And so that's why I wanted to talk about it because that's not something that people really want to discuss.   It's a hot topic.   And I'm sure that you're probably going to have somebody come back and complain to me and say “you were terrible” but it needs to be said that that was a difficult time for deaf and hard of hearing individuals in particular. 

Crystal: 
So, let's move on and talk about Deaf identity.   So, I've talked a lot on my podcast about Deaf identity and how Sam identifies as that.   But you are hard of hearing.   You don't identify yourself as being deaf.   You don't use sign language and you have a very different experience with the Deaf community than Samantha.   So, let's talk about that in particular.   What is your experience and how do you feel about where you fit in with the deaf community?

Luke:
So, the Deaf community they were a very particular group that had a lot of pride with their deafness.   Which is a great thing and I fully support that.   But that said, there are certain aspects in a deaf culture that you needed to be.   Where you needed to know sign language, and speak mainly sign language, and then you need to be a strong advocate for all the deaf accommodations and being deaf trumps over everything.   Which understanding all the discrimination and the hardships that we grow up with it's understandable.  But that said, I didn't necessarily felt like I belong in the group.   And I'm sure that there are probably going to be some out there they're going to be saying like you're still not a true member and you never will be.  But like I never really belong with the group because I think they also discriminated me as someone who was part of the hearing world and still chose to be in the hearing world.   I know that there's a lot of deaf people out there that just don't want to have anything to do with that which again it's understandable.   But it creates tension between me and the deaf culture because now I'm being said that I'm not part of the deaf culture.   I am I'm not deaf at all.   I'm not a true deaf person.   Well and I already know this from the hearing world, because now in the hearing world I don't really fit in fully because I'm not a hearing person.   Hearing this from a deaf culture it really makes me disappointed because this was one of the groups that I thought that I would fit in more than the hearing world.   So, I'm sure that there might be others that disagree with this but in my opinion, I feel like I'm placed between the middle or not on either side.   I'm not fully into the deaf culture, but I'm not fully into the hearing culture.  And that just creates an isolation on my part because now it's harder for me to make bonds with both sides.   And it just always makes me shy away from really delving into the culture of the deaf.   Sam, who is my sister, I don't know if she fully understands where I'm coming from.   But at the same time, she was one of the reasons why I still don't shy away fully from deaf culture.   But as the majority of the Deaf culture itself, I'm still shying away because I haven't really met other deaf people that didn't discriminate. 

Crystal:
So, you feel like you're discriminated against by the hearing community because you're not hearing. 

Luke:
Yes

Crystal:
But you're discriminated against by the Deaf community because you're not deaf enough. 

Luke:
Yes.
 
Crystal:
And I feel like there's a large group of people that are in your situation.   So, because of technology, there are a lot more young people in general that are more like you, where speech and language is their first language and sign language is a secondary language.   And you're right there has been a lot of issues with that because the deaf culture, especially the older generations, they really don't like the concept of speech and language because they feel that that is changing their culture.   And in some ways, it is and and that's a fair thing.   But it does make it difficult for people like you.   And I remember there being a poem that I got actually from a conference that I had gone to and I remember reading it and just crying and it was all about being rejected by the deaf community and feeling like people wanted to put this label on you as either hearing or deaf.   And if you didn't apply that label to yourself then you didn't belong.   And that's heartbreaking because I thought “well geez that's, that's how he feels.”  And I think there's a lot of kids that are out, there there's a lot of people that are out there, that feel that particular thing.   And if there's one thing that I could say for the deaf community is that I wish that would be different.   There would be more acceptance and there would be more inclusion in that aspect.   We know that that's going to come from the hearing community.   That's a given.   And I think the surprising thing was that we didn't expect that it would come from the deaf community.

Luke: 
Yes, kind of going back to the label situation.   I always kind of wondered why we put labels on ourselves.   Like being deaf is one of the aspects of who I am.  But it’s not the only thing that I am.   I'm also a swimmer, I'm also an academic learner, I'm a brother.   There's a lot of things that are part of who I am that are the things that I have.   But all these labels individually are not who I am as a person.   All these together, that creates the character that I became. 

Crystal:
So, you are headed off to college soon.   We visited several different colleges.   So, the first couple schools that we looked at were all hearing schools.   We did look at an all-deaf school and then we looked at a school that was essentially a hearing school with a deaf college in the middle of it, so there's a large deaf and hard of hearing population.   And so, you ultimately chose that you are going to head off into the school that has the deaf and hard of hearing college within it so you will have a mix of both hearing and deaf peers.   So, what made you choose a school that has a large deaf and hard of hearing community knowing that you just said you don't feel like you belong in a deaf community? 

Luke:
I didn't necessarily want to go to an all-deaf college because I wasn't sure how comfortable I would be in an all-deaf college.   I don't know a lot of sign or at least to talk fluently so going to a deaf college and then learning like two or three weeks and then using that knowledge from the two or three weeks and applying that for the entire four years that this didn't seem that.... it seems like a really hard task for me to do.  And the social atmosphere for the all-deaf college was, it was like going into a bubble.   Like it was very apart from the outside world.   It was all Deaf and only Deaf.   Deaf businesses were created, deaf teachers, deaf communities, um deaf etc.   And that was not what I was looking for.   I wanted to live in a world where I will know that I'll still deal with these challenges of being in a hearing world but I'll learn those with support from a deaf college within the hearing school.   I'm still improving and developing on how I can manage the real world. 
 
I didn't necessarily want to go to an all-hearing school because I never lived in a deaf community and I figured that this would be a good opportunity because they have a deaf community and hearing school and this would be a really great opportunity for me to kind of find out what it's really all about.   This has both aspects in the mix of it so if I don't necessarily like the deaf community then I don’t have to live in the deaf community.  I can still go to the same school but live in the hearing world if I wanted to.   At the same time if I really like it, then yeah, I'm really all for going into dwelling into the Deaf culture and really experiencing what it's like.   It's just for me it's a cautious approach and I'm just finding my way of what it really means to be a hard of hearing or a deaf student like because again I never really lived in an environment besides spending time with my sister what deaf is really being all about. 

Crystal:
And I mean it should be said the other portion of that is accommodations.   So going to an all-hearing school you really have to fight for and really ask for the things that you need.  And it can be done.   Regular hearing schools they do have office of disabilities where you can request accommodations but oftentimes those professors or teachers, they don't have a lot of experience with it.   And so, you really are in the same situation you are now where it is teaching teachers how to deal with your accommodations.   With the all-deaf school as you were saying it was a deaf bubble.   And for some students that is exactly what they need and what they want.   But for someone who doesn't identify themselves as a Deaf person that was a very uncomfortable situation for you.   And I remember going there and walking out of there and thinking wow I really thought that this would be different but you and I didn't feel welcome there.   So, when we went it was you and me and Samantha and within five minutes, they started talking to Samantha more than they were talking to you. 

Luke:
Yeah

Crystal:
 And that was because Samantha's first language is sign language.   And it was a very surreal experience because me being a person that again I know sign language but I'm not fluent.   I struggle in very busy fast-paced conversations.   And very quickly they started to not want to communicate with me at all.   But it was just a very different weird experience.   But for people who are culturally Deaf, who use sign language as their main language, who want that deaf bubble, it is the right place for them.   It was definitely not for you though. 

Okay, so we're gonna wrap this up.  So, we I just have two final questions and they kind of go together so the first one is are there any benefits to having hearing loss is there like uh this is kind of the cool part of being deaf and hard of hearing?
 
Luke:
I would say that there are a lot of benefits me and the hard of hearing students.   Um more than I guess the hearing people might realize.   I mean like I know I sometimes am constantly in environments where I necessarily don't want to hear like the situation or whatever the conversation is happening so sometimes, I just flip off my hearing aid and I would just hear complete silence for a couple hours which is nice.   I know that like we're always constantly bombarded by sounds and all that and really being the benefit of being hard of hearing is you can switch off those sounds anytime that you want to.   It's really a great skill to have.   Another thing is a little bit of a see a secret, that we have uh or I like to call it the deaf card.   Whenever we think that we misinterpret what they're saying when we really didn't or we might we purposely ignore someone saying something, then we can just use the deaf card and say “yeah what was that again?”

Crystal:
like when I ask you to do chores? 

Luke:
Then I can just say I'm sorry I didn't hear you.   So, there's a lot of advantages to having or being deaf is that more than most people realize.   I think it balances out the cons.   It's a gift that we have.   Hard of hearing and deaf and deaf people are a lot better at reading people than most people think.   Like when I walk into a room, I immediately notice everybody's body language.   I know who is slightly more happy.   I know who is sad.   I know who might be a little bit moody. 

Crystal:
Okay so let's talk about advice for other teenagers.   What is your advice for navigating the teenage years with hearing loss, especially for those kids that are like you where they are kind of by themselves in a regular hearing school?   What's your biggest advice for those particular kids? 

 Luke:  
My biggest advice would be, be more confident about yourself.   It is very easy to dwell into a world where you don't find as easy of a connection with anyone and as teenagers the entire path of going into adolescence or adulthood is to find out who you are, and with hearing loss it's it is significantly harder.   When you need help, don't be afraid to reach out for help.  And if you believe that you can do something then don't be tied down by any limits by the people around you.   Have high expectations of yourself and just believe that you can do anything. 
 
Crystal:  
What about parents?  Do you have advice for them? 
 
Luke:
For the parents, I want to say that there might be a lot of feelings or moody situations for your deaf and hard of hearing people.   They are certainly not easy to handle.   I know that my mom specifically has a lot to deal with us, for me and my sister, we create a lot of drama in the house.   But just be patient with your kid.   Really listen to and understand where they're coming from and what they're saying.   And I want to say be the first to reach out to them.   And this is something that I don't really hear often.   Like I talk to a lot of students and they're like my family doesn't notice me or really talk to me as much and like they don't sit down with me at the dinner table and really talk about my day or how I experience about my day.   And usually if they do, they don't really tell what's going on and they don't tell all their problems because they're afraid of reaching out.   And I'm asking the parents to find a time to sit down with them and really communicate with them.  Like really listen to what they need from you because we're really struggling to find our way to being an adult.   So really sit down with your kid and listen to what they're saying that's all I ask. 

Crystal: 
So, I think that it's a really good point.   From parents' perspective a lot of what I hear is well “teenagers don't want to talk to me, they don't.   When I ask about their day, they don't tell me anything”.  And I think that in my experience, a lot of times when as parents were approaching, there's already kind of an energy of what the conversation is going to go like.   There's a judgment there and and one of the things that I've learned from you is that sometimes I need to take my emotion out of the moment and I need to pay attention to what your emotion is.   And that means that I sometimes can't freak out about something that I really feel like freaking out about.   But I have to listen and understand your perspective.   And especially with a deaf and hard of hearing student, I'm the first to admit that I don't know what that's like.   I'm you and Sam's biggest advocates.   I have literally made it my job to be an advocate for deaf and hard of hearing students.   But at the same time, I don't live with what you live with every day.   And so sometimes taking my ego out, is what is the most important thing for parents to do.   Is take your ego out of it take what your expectation or what your want is and come to your teenager and say okay I really want to know what you feel and I'm gonna let you tell me without judgment, without expectation, and be open to that.   And I feel that,  at least in our experience, we have had better conversations when that happens.   So that was a really good point. 

And lastly, you have recently decided that you want to pursue setting up an online group for kids that are like you, particularly high school teenagers.   So, tell us about that. 

Luke:  
So, I am creating a group called Plumeria.  The meaning behind it is new beginnings and new hope.   That's what I want the future generation to be. this generation as well, is to band together and work together and realizing that we're not alone in this world.  We can do things the way we want.   We can change this world to accommodate our needs and accept us. 
 
Crystal:
 So, if you would like to join that group just look at the description and you can click on the link and find him. 

Okay well thank you so much for being here.   And I appreciate all of your advice and your perspective and hopefully others will relate to it and understand it as well.   So, thank you very much for being here.   

Luke: 
yeah, no problem

Crystal :
And thank you everyone for listening.   I hope you learned something new today 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 about this podcast or leave a review.   Stay tuned for future episodes coming out in the next few weeks but until next time I'm signing off.