S1 E1: Deaf Perspective

Host Crystal Hand and her Deaf friend Stephanie Kiessling discuss Deaf issues that are important today.  This episode covers hot topics like spoken language vs sign language, the role of hearing technology, deaf school vs. hearing school and what it is like growing up in a hearing family.  Stephanie gives us insight on the deaf perspective in a world that too often forces Deaf people to accommodate hearing peers and gives practical advice for families with deaf children on how to navigate raising them.


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 :  00.03
Okay so our first episode is called deaf perspective.   So I think it's really important to start off this podcast with the perspective of an actual deaf person.  It seems like a good place to start since we are talking about all things Deaf.   There is so much that hearing people don't know even family and friends of deaf individuals and yes even professionals that work with them.   
So throughout this podcast we are going to be exploring it all and today to start us off we are going to be talking to my friend Stephanie.   If you are listening to this podcast and you have never actually met a deaf person or maybe you have and you never really gotten to know one then you are in luck today because honestly Stephanie is one of my favorite people.  She is  a friend and  mentor to both me and my daughter, a successful professional and an all-around fun person.   She has graciously agreed to be my first guest in this crazy project I'm taking on and so I'm going to be asking her all sorts of questions that you may never have thought to ask and hopefully she will give us some direction on subjects that need to be talked about in the future.   So let's get started, Stephanie thank you for being here, um so i want to ask you some basic questions first just so the audience can get to know you so tell us a little bit about yourself.  

Stephanie:  01:26
Crystal, thank you for having me. It's a pleasure to be here> So um a little bit about myself I am um I'm born and raised native from jersey. I currently live out in the dmv area for those who don't know Washington dc in Virginia.   I'm more towards the Virginia area.   Um I am a HR professional in the government and um I am I identify myself as a deaf individual although maybe on paper it may be hard of hearing,  but that's something we can talk about today.  But I am deaf and I look forward to answering some of your questions or maybe some of your uh thoughts that you have onto this podcast

Crystal :  02:03
So, you told us what you do for a living,  um so what else do you like to do.  Like what activities are you into. Like what do you do on your spare time when you're not working and you're having fun with all your friends

Stephanie: 02:12
 Oh you know I do tons of different things um.  In fact next week I'm going on a fishing charter boat with a bunch of my deaf friends.   Just last weekend I had a pool party with a bunch of my deaf friends from college.  I do everything you can think I can do.   I go swimming, I go wakeboarding, I go kayaking, I go snowboarding, I travel, I I'm I'm constantly on the road trying to, you know just live off my life like anybody else should.

Crystal :  02:42
 Awesome, so let's talk about your deafness.  So were you born deaf? Did you develop the deafness later? Like how did that all happen for you?

Stephanie:  02:53
So I was born deaf and my parents didn't know until I was 18 months.  Um I think at one point they were talking and they were making some sounds and I didn't respond.  And so I think my parents kind of took that to the initiative to say okay, I don't think she's hearing me.   Let's go confirm you know with the doctor and sure enough I came back and we found out that I was deaf.   So I was born deaf and I had hearing aids at the age of three so I picked up some sound but yes I was born deaf.

Crystal: 03:25
Most children that are deaf are born to hearing parents, we know that.  And usually they don't have any deaf people in their family so do you have any family that is deaf or hard of hearing?

Stephanie: 03:38
 
So, we have a distant cousin which would be on my mom's side.   My mom has a distant cousin who is completely deaf.   We think that my mom's side of the family with her dad,  we think that there are some genes in the family that I had turned deaf from but we don't know.  We wouldn't,  we will not know the answer to that.   But yes I do have a deaf family on my mom's side of the family, but we don't often speak so it's just kind of you know a distant cousin of some sort.

Crystal: 04:09
 Okay yeah, becauseI know with with a lot of our families, and my kids are one of them, we we had genetic testing done but it really at that point in time, now of course this was 15 years ago, it was inconclusive.   So it was like, yeah we know it's probably genetic but we don't know what's causing it, so good luck.

Stephanie:  04:30
Completely understood.

Crystal:  04:31
Let's get started on some more difficult questions.  I have noticed that with my children that there have been times that they've really struggled with their deafness.   Several years ago my son came to me telling me that he didn't want to wear his hearing aids, thinking that if he just tried really hard it would just all go away.   Um that was really hard for me and it has taken my kids a long time to accept their deafness and sometimes they still struggle with things.   Do you ever still struggle with your deafness? Did you ever struggle?  Were you ever angry or upset that you were deaf and why or why not?

Stephanie:  05:08
 So,  this is something that I think a lot of people in the deaf community would struggle with, is that trying to accept their deafness is a huge, I feel like it could be a huge fault.  
They feel like they're at fault for being deaf you know they're blaming a lot of people that they are being deaf.   And it's a very difficult thing to accept that you are deaf.  It really is.  I grew up you know,  a lot of people think oh a happy baby they're not gonna know what you know what hits them until they get older. Sure enough, I got older and being the only deaf kid in the school and in mainstream school especially, essentially means hearing students who are not deaf and myself.   I constantly was frustrated on how deaf I am.  I was blaming myself.  Why am I deaf you know?   Why am I this way you know? Was I adopted?   You know, was I like broken? Like trying to figure out ways why I I was deaf to why the way I was born.   And yes I there have been days I  hated I hated to be deaf. I would throw my hearing aids apparently across the grass.  My parents would go find my hearing aids in the grass.   My grandparents even - and I would come home crying.   I hate being deaf because I was singled out.   I hated to be singled out.   I hated to be isolated. But um I went through high school, which was still a struggle, but I then went to college and college really molded me into the deaf individual that I am today.   Even with my career.   Gng to a school where I am accepted for who I am, the way I speak, the way I hear you know with hearing aids.   I sign and I speak,  I come from a hearing family,   I am the only deaf child in my family,  um in a very large family that I have and I just felt welcomed, accepted and you know comfortable.   And so I learned to not blame my deafness anymore then.  But yeah it's growing up it was very difficult.   I mean so even today is still difficult but you know I've learned to accept it over time as you get older

Crystal :  07:13
So a lot of deaf children there is a lot of frustration with being around hearing people.   In fact, you know, you and I were talking earlier on that you know a lot of the older generation deaf people have this resentment towards hearing people.   With good cause, you know, they have not always been treated well.  We know that for sure.  And the very fact is, like we said, most deaf children are born to hearing parents.  And so there still can be a lot of discontent in hearing families with their deaf children.   Growing up in a hearing family, how was your family environment? You know were there times that you felt different? Were there times that you felt alone? Did your siblings struggle with things? You know, what about your parents?  Like how did that all feel to you growing up in a hearing family being the only deaf child?

Stephanie:  08:05
You know god bless my family. I love them all. This is a tough conversation I do have I often have with my family is that again I am singled out and they know that.   And I think this is that there have been conversations with my mom how growing up was so difficult for me and being even in being even being in a hearing family is still a struggle today.  I don't ever want to feel like I need to fit in I think some days I feel like I need to. What a lot of people tend to forget and sometimes, my family you know I'm sorry the truth has to come out, but you know I think sometimes I have to come out today one way or the other, is that I'm always accommodating you.   I'm always accommodating my family because I grew up speaking and signing which we will get to that eventually today.   But the fact that I speak and I have had speech therapy for so long that you know I've accommodated all of them.   And it was very difficult for them to accommodate me.   Now side note, I had family who picked up sign language when I was younger but then I've learned that I've spoke so well, that my family forgets how well I speak, you know they tend to go oh that's right I forgot you know she can she can speak.   But you know still at the end of the day I'm only getting 50 70 of the conversation.   You know as much as I try hard, I've learned to not speak up anymore.   I think because I'm tired. I'm tired of trying to accommodate them and I'm trying to accommodate me.  So growing up in a hearing family, you know, my family did what was best for me and I truly believe that to this day.   What they did was best for me.   And I, you know, as I get older I make what's best for me now.   I have made those changes.   So growing up in a hearing family it is difficult and you know.   I have one sibling who is hearing and she took it very hard.   Probably because my parents finding out I was deaf they said what do we do now?  And they really had to shift all their focus on me going to the audiologist, getting hearing testing done, going to speech therapy, going to school to get into you know to work with the teachers of deaf, trying to get my education on track, and they kind of lost the sight of my sister.   Which really kind of tore I won't say tore her relationship apart but really she really resented some times  because she didn't have that attention as much as I did.  And so that was a hard conversation we've had but she knew she knows that it was not intentional.   It's just it's just how our operating is and we try to really change that now.   I hope that she she realizes that now but you know sometimes there are tough days where I think she misses it, that she wishes she has some of the same attention that I did.   okay so I think if we could change anything, if the two of us would say we can change something, it would be the attention that was spent together for the two of us not just me all the time .  

Crystal:  11:03
 
Right, And that happens a lot in any family that has a child with anything that's out of the norm, or even in normal families where there's like a child that just takes more energy with their personality or things like that.  A  lot of times siblings can be resentful.   And our family has been very lucky that both of our children are deaf, and I know that sounds weird to say, to a lot of families because they're like wow you think that's great your your kids are deaf but it has been.   Because they they both get equal attention because I have to.   You know um but even at that you know,  my son does better with speech and hearing than my daughter and so there are times where, you know, I have to step back and say okay hey I've been I've been paying a lot of attention to Samantha I need to make sure I step back and make sure he's good.   Because it is really easy for hearing parents to forget, especially when they get a little older in their teen years your kids are you know you kind of have a rhythm going and then all of a sudden your teen is like I'm still deaf!   And you're like, oh yeah I forgot for a moment, not that I forgot that they're deaf,  I forgot that I need to accommodate them as much as I should.  And that's a total parent mistake. It for 100 is but it's one of those things that it's it's really hard because you know some things that you just don't you don't think about unless you have to think about them.   You know and so then it's like oh I gotta get myself back on track.  I gotta remember that I have got to accommodate and it does take a lot of energy and some parents are better at it than others.   

Stephanie:  12:42
 Yes I agree you know

Crystal: 12:44
So and that's that's the other piece is that as difficult as it is for you know for deaf people growing up and these hearing families, like there is this disconnect um and parents feel that too and we're and we're trying to do the best things possible um but you know a lot of times we're failing in many ways.  

Stephanie: 13:03
 
I think what I try to remember is that you know the generation is changing over time the technology is changing the you know the time today is changing and so in my situation.   I think it would have been better if my sister and I had two different interests of things.   You know we were dancing growing up together, so we were doing the same thing we got the same attention.   But I think at one point I think they could have taken her out and do like a ice cream night or even a movie night with the three of them and then kind of leave me with the grandparents or whatever.   That that may have even even out the attention span because all their attention has been putting on me towards family doctors and going out and meeting everybody.   So I think, try to remember that if you do.   That you're not purposely trying to do that, part of me wishes that my family my parents did that. Maybe they did and I don't know about it because it was again this whole focus was on me.

Crystal:  13:54
We've talked about this next topic before which is that within and around the deaf community there are people who fight over communication modes.  There's this whole like war internal war that goes on in this community that most people aren't aware of until you're actually in it.   But they're you know we fight about whether speech or sign language or cued speech or whatever you know and all the many things in between what is the best strategy.  And there of course it gets very confusing because depending on what expert you're talking to then they will tell you well this is you know statistically better and then another person will say well no no no it's not and you're you're doing your studies all wrong.   And so and so on and so forth.  So as a deaf person, you speak and sign, which do you prefer and do you feel that it's important to have both or would you be happy with one or the other.

Stephanie: 14:50 
So,  I first off I will appreciate that my parents had made the decision for me to do both okay.   At the age of three I picked up speech and signing so I think it's not like I had a choice.  I was given that communication.   They wanted best to build the world for me and to this day I am still still grateful that they made that decision for me.   So for me  In a hearing community of course speaking is going to be so much easier because I can speak.   I mean all of you are listening in right now hearing me speak so of course I'm going to speak because it accommodates you.   But if I have a deaf friend that we speak and sign together I will speak and sign with them.   If I have a deaf individual that does sign only and not speak I will sign.  So, I'm essentially accommodating whoever their preferred language of communication is.   But me personally, if I had a choice, and you if you ask my parents if I had to choose between speaking and signing they will tell you no doubt,  I will mainly pick signing because without my hearing aid I am deaf.   I do not hear anything.   This tool is essentially for the hearing community and not for me.   Maybe I'll use it for music or you know people talking but most of the time I can take it off and I can still communicate.   I can still have a conversation even in a genuine conversation with somebody who's speaking in sign.   So I am not opposed to those who just speak.   I am not opposed to those who just sign. I just so happen to have the best of both worlds and so happens to have bet the best of both communication.   So for me I I'm happy with what I have.   I don't want to say there's one better than the other but because I call myself deaf and I am a deaf individual in the deaf community of course I'm going pick sign.  

Crystal : 16:46 
And the reason that I ask this question is because we always have a lot of parents and hearing parents say well I want my kid to talk.   We live in a hearing world   that's the argument right.   We live in a hearing world so my kids should talk.   And then the deaf community comes and says "we have this whole culture.  We have this whole language.   It's so much easier and so there's just this this kind of disconnect there.   And with me I wanted whatever to stick.   For me I was like I don't care what it is if I have to learn freaking Chinese I will figure that out because I just want to talk to my kids.  And so we kind of have done this whole blend of, we switch back and forth.   And I can sign and I can speak, but I don't do well when I do both at the same time.   But I I still feel like I can hold my own in the sign language world but I'm not nearly as fluent as my kids.   But that was just my perspective -is I just wanted something to stick. I don't care what language it is, I just want to figure it out and then we'll go from there.   But that is kind of something that a lot of parents struggle with because you know there is this,  call it audism, where it's like well you're deaf so you need to accommodate.   You need to figure it out not me.   And I think that and I'll just say it because I'm this is my podcast and I'm allowed to be controversial right.   I think that's a huge mistake that a lot of parents make you know.   I mean as a hearing parent I understand that you want your child to speak your language.   I get it. I do too.  But if you're gonna make them do it then you should put in the same amount of work as them. But that's just my personal you know and there's probably gonna be a lot of people on the internet that are like wow you know.   But that's um that's the purpose of this podcast right.   We're talking about things people other people don't want to say.  

Stephanie: 18:33

 Yes very very raw answers. Um I think on top of what crystal is trying to say it too, is that remember what I had mentioned earlier that I am accommodating you.   Where are you meeting me halfway?   So how is it fair for one who to learn to speak and sign that you're not accommodating me halfway? So I always, you know like I said, I'm I can sign and I can speak but most time it's everybody's speaking back to me.   Most people that sign back to me are either interpreters, ASL interpreters, or my deaf friends.   And so essentially at the end of the day, it's again I'm not bashing out anyone who who's on the other side of the spectrum,  but at the same time you know I have the best of both worlds, but you know I'm I did this because I'm speaking because I'm accommodating and it's easier of course.  We want to find something that's easy for all of us.  So I do it.  But at the end of the day someone who signs doesn't necessarily mean they can't communicate.  They have other ways of communicating out to the hearing world.  Like writing on paper writing, on text, of course we have all this technology now these days.  We have live captioning and google transcribe and all that so it's not like they're going to be not be able to communicate they are it's just in a different method

Crystal : 19: 41

Sure yeah and we do live in a great time right now with a lot of different technology.   Still a long way to go but you know a lot of different technology.   Yes, okay so going along with the whole speech and sign thing as I mentioned before, there are some deaf people out there that really resent being forced to speak and learning to speak and again this is a lot of the older generation of the time when you know deaf people were told to sit on their hands and they weren't allowed to sign and all of that stuff.   And and I feel like we've gone away a lot from that.   There's still pockets of that in different areas um.   But have you ever been upset that you were forced to have speech therapy?  Were there some speech therapists that you did better with than others that you were like I really don't like this person because they're they're just making me talk and they're just not being accommodating?

Stephanie:  20:39
 So again this is not something I have shared with my my parents.  I'm sorry  mom and dad.  But I had to spend years going to speech therapy from the age of three all the way to high school.  Okay, that's from the age of three all the way to 19.  It's not that I hate it.   It's just so much of I was going.   And I had a really hard time trying to break it down between crunch and crunches.   So like so that was the process that they were trying to do but I also was told that I was doing the difference between Ken and 10 which is k-e-n and t-e-n.   So I had a really hard time trying to do my r's and my t's and my s's and my k's and all that.   And so I think that, essentially, was for speech therapy and then as I got better at trying to nail those words,  I think I continued to stay in speech therapy trying to pronounce harder words.  Speech therapy was rough.  Yes there are there were some speech therapists that I mesh well than others um but again by the time I got to college I really didn't have speech therapy anymore.   It was more still trying to get across public speaking.  I often notice that I speak too fast and I don't really think about what I say.  So I am always trying to catch myself to slow down and try to really say what I say.   And people will tell you I do that a lot and I do forget to do that.  So I don't resent speech therapy I think it helps me try to say the words I'm saying.   But it's trying to have a conversation might have been maybe a different focus.  But I think it was more so of trying to pronounce the words.  So  I I wouldn't say I resent it today was just,  it was helpful yes.   But I can understand why some people resent that but I'm still speaking.  I'm still here I'm still talking you know so.   

Crystal :  22:27
And it's a really hard thing for the deaf community to learn how to communicate.   Like we've talked about this before with my daughter.  You know she goes into a new atmosphere, she speaks and she signs but when hearing people see her sign they get really nervous about talking to her.   They're like oh my gosh I don't want to say the wrong thing or she's not going to understand me so I'm just going to avoid her.  And it's not until she starts to verbalize her own voice that they start to let their guard down and start to hang out with her.  Which is honestly terrible but it is what it is.  But that's where that disconnect is is you know.  Do you do you push speech because you want her to be accepted by hearing peers or do you just let the language flourish of sign language and let her figure it out.  Either way it's not easy you know because speech language speech is really really hard for deaf people.   It's not being able to hear an s at the end of a word and having to replicate it.  That takes a lot of practice and that's wasted energy on something that else that you could be learning.   But unfortunately a lot of times in the hearing community if you mispronounce things then people assume that you are uneducated which is not true.   But that's what people assume.   I don't want my child to seem uneducated so I want to make sure that she can say things right and all that stuff but then you're like man this is a lot of energy just so she can say her S's.   It's definitely just a difficult decision.  My son Luke,  he is he kind of aged out of speech therapy pretty early in middle school.  He was on target and they were like okay you're pretty much done.   Samantha is still in it though and she's going into high school.   It's definitely a conversation we have every year of how what does this look like for you and is this something that you still really need.   And and some of that is not knowing what her future will be.  And I think that's also a thing for a lot of hearing parents is they're not sure is my child going to be in the deaf community or in the hearing community how do I bridge all of that.

Stephanie:  24:28
So I think I mean having this conversation, I think I was able to speak well and I got my point across.  I think it was more of trying to make sure I was understood on the other end.  Um you know, making sure my audience understood me.  So I think by the time I got in high school I think I already knew I kind of aged out but I stayed in to make sure that I was saying the right things and I think that's what I forgot.   More kind of like a giving presentation in class or speaking skill that's the word I'm looking for.   Is that I'm going to speech therapy to make sure I speak and that I'm understood.   So not so much of speech by the time I got to high school but more so trying to make sure I was understood that's all.  

Crystal Hand:  25:12
 So another hot topic is hearing technology.  Hearing aids, cochlear implants, no technology at all.  This is another landmine that often everybody walks on as because there's there's all these difficult conversations that go on and which one's better you know.   I have a story about how I went to an audiologist who, I knew my daughter was deaf at this point, and you know after testing her you know she is not implanted, and after testing her the audiologist walks in and says why doesn't she have a cochlear implant and I was  like because she didn't want one and I don't want one.  And I have nothing against cochlear implants I don't.   But there is this whole kind of argument about what what the best hearing technology is and all of that stuff.  So let's ask you, do you use hearing technology and what are your thoughts on cochlear implants and that whole argument discussion over what is best  and what is what we should and shouldn't be doing with our kids and technology?  

Stephanie:  26:14
Okay so this is something that I've I've worked through with my family and worked through with my friends my deaf friends specifically.   I have a hearing aid.   I only have one and what a lot of people don't realize is that it's not that I am deaf in one ear and hearing in the other.   I am  bilaterally deaf.   One side of the hearing aid doesn't work um well I should say one side my ear doesn't work and I don't need a hearing aid for it because I I have one in my left ear.   I had two hearing aids but by the time I, before the audiologist said that the hearing aid wasn't you know working for me and I don't think cochlear implants was even popular then so it never was it was actually never brought up I don't think, I could be wrong.   And I always stuck with one hearing aid and I actually had someone say to me an audiologist and a friend say to me why don't you think about cochlear implants.  And I said why what you know what what's the intent behind it.  I already have a hearing aid.   I I'm you know I hear, I'm comfortable with what I hear.   I don't wanna say I'm hearing but I'm comfortable with what I hear.  Um thier are words where you will hear better you will hear like you're a hearing person and honestly I didn't want to I was comfortable with how I heard.   I was comfortable with what I was hearing.   At the time hearing aids wasn't really growing yet they had just started the new technology and cochlear implants was basically taking the lead and as I got older I still realized that I don't want cochlear implants.   I down the road maybe when I get older and I lose some of my hearing I may want to but I have sign language so I really don't feel like I've been missing out on that type of communication.   But I am, I have nothing against cochlear implants at all.  I understand if a parent wants to implant the child because they want to the child to have some hearing but I always try to encourage looking to your resources even before you do cochlear implants.  You know cochlear implants is very risky risky surgery.   You know it requires the child to go under anesthesia and then you got to implant an implant inside the ear and then you can't have an MRI.  So if your child gets hurt and they're going into ambulance and then you don't need an MRI that that really could screw up the whole process of trying to diagnose a child for whatever reason that there may be.  So again I have nothing opposed to it.   Yes do cochlear implants may have more things than what a hearing aid has offered?  Maybe.   But I always think I like to try hearing aids first because you know it's I would say it's less risky but again technology is evolving and now it's hearing aids against cochlear implants now which one is better.  Hearing aids will probably be better fit for those who have some sort of hearing and a cochlear implant would probably mean more.   So for those who are completely profoundly deaf but at the end of the day if your is child profoundly deaf there may not be a way for them to actually hear anything.   So that's that's something that people need to think about if they feel like oh they're going to be completely deaf and then let's say the cochlear implant is implanted on them a couple years later that child might not even need to use it because they still don't hear anything.  I have friends who have cochlear implants but they decide I don't hear anything what does this benefit me.   So try to think about I try to think about comparing -  think about the long term you know. I know short term you want to fix it.   You want to expose everything right now but at the end of the day they can be profoundly deaf.   I don't know if you're able to go backwards into being hearing.  So I'm not opposed to cochlear implants and I'm not opposed to getting it done and implanting a child but you know I like to always say try your resources before you go to cochlear implants.   And if you think that's the best fit then so be it but try to try to think of other ways before you do that.   I always like to think that's my last resort.  And for me, as a personal for me, if I was to ever lose my hearing and I I would say cochlear implant would be my next option but right now I don't need it.   Let's say 20 years and I lose my hearing. I may decide that I want cochlear implants because I still want to be able to hear music or people but that's my personal decision.  That's my personal thought.   

Crystal:  30:03
So yeah, so I think that there's a common misconception amongst a lot of parents because you know we're told by doctors okay your child's deaf so now get a cochlear implant and that will fix it.  That they will suddenly become hearing.   And I've heard a lot of people compare it to oh it's like getting a pair of glasses it's just gonna fix it and it'll it'll totally be fine.   There isn't any further thing  from the truth.  You know  a cochlear implant is a too, l just like a hearing aid is and your gonna have times where that cochlear implant's not gonna be on,  you can't wear cochlear implants in the shower and you can't wear it in the you know when you're swimming.   I mean I guess they do now have some waterproof ones but they're kind of here and there.   I don't actually know how great they work. I'm sure somebody will come in and tell me oh they're amazing you know.   I'm sure.  But there are still going to be moments where your your child is still going to be deaf and so you know what do you do in those moments.  You can't your child still can't hear.  Um so they're still deaf whether you have a cochlear implant or not.  So that's a common misperception that I think a lot of a lot of doctors actually push you know.   They tell parents that this is this is your child's fix.  We'll just we'll put this on we'll do this surgery and everything and it'll be like their hearing and then later on they find out oh this this isn't actually the case.   And it prevents a lot of people from taking the time to learn sign language or taking the time to communicate in effective ways with their child because they think well they have a cochlear implant on so they should be fine right.   I really feel like that cochlear implants themselves are a great tool.  Sometimes the way that they're pushed on on families and on deaf people I think is really a disservice to the entire community because I really feel like they're being sold as a fix and as you said not every deaf person wants to be quote fixed.  I mean my daughter also said I like being deaf I can't imagine hearing certain things and I don't want to find out.  So I'm I'm cool with it.  And that's a very foreign like a foreign thought process to a lot of a lot of hearing people and I think a lot of people don't understand that.  So and the other thing is is that a lot of kids don't actually qualify for cochlear implants either.  So if you don't have an auditory nerve there's nothing to attach to it so putting all your eggs in one basket for this cochlear implant isn't gonna fix it.  Samantha has some friends who have cochlear implants and they're very successful with them.   I will say that for her at least, she is as successful or more successful with just her hearing aids and sign language as all of her friends with cochlear implants.   So I don't feel that by not getting her a cochlear implant we have done her a disservice as far as communication access which I think is where a lot of people are told differently.   I can't tell you how many professionals I've talked to that are like I can't believe you didn't get her a cochlear implant.  And you're just like oh I want to scream right now.   She's fine. 

Stephanie:  33:06
Right, right, right, right I think I think what people also tend to forget is that it's not the end of the world.   You have a beautiful individual that is still succeeding in life.  You know what a lot of people don't think or know is that deaf people are successful. We we can do a lot of things.   We you know I can list them all but you know I'd like to let you find out that for yourself.   You know in future crystal's future podcast but just know that it's not the end of the world and there are other ways other than cochlear implants.   There are other ways and other than hearing aids there are ways to connect with your loved ones, your child your friends your family other than just speaking and cochlear and using cochlear implants.   

Crystal:  33:49
You'll find out more about my crazy children and all the different things that they do and we'll have a lot of other deaf people on this podcast as well.   So ,so the next topic is about school most deaf and hard of hearing kids are in mainstream regular schools.  They go to neighborhood schools and they just get accommodations.   And that can be really difficult.  The benefit of that is that they're around hearing peers; they tend to have the same curriculum but accommodations are really hard.  And then there's the people that are like all deaf kids should be in deaf school and we should be around you know everything deaf. And the benefit of that is that you're getting socialization with people that are just like you , you're having this amazing experience.  But the other argument is is does that prepare you for the the rest of the world? You know,  So you have gone to both deaf school and hearing school so what are your thoughts on that?  

Stephanie:  34:51
 So growing up um when my parents found out I was deaf I went to a pre-k school that was somewhat a deaf school.   We just had a deaf contained class in a hearing school so we interacted with the kids probably only during lunch and gym but the rest of the time we were it was just us.   And so all the way from that to fourth grade I was in that deaf contained class for the majority of my time and then I actually ended up having to take fourth grade again because my reading and my writing skills were not up to speed up to par as the other hearing students were.  And my parents pulled me out and I had to take fourth grade again in our um the school district that I was living in and in fourth grade all the way to 12th grade.  And I had a teacher of the deaf and I had an interpreter with me at all times all the way from fourth grade through high school.   And so I don't have a favorite.   I think because I experienced the best of both worlds um or experienced both schools but I I think it really could narrows down to your education.  Um I was very upset and very sad that I had left the deaf contained school with the mainstream school but my parents did what was best for me to make sure that I had the proper education and to make sure I would actually succeed in life.  And without them today, and without the teachers that I had and all the interpreters I had, and the college that I went to I wouldn't be the HR specialist that I am today for the government.  And being successful in my career and in my life in my personal life.  And so I don't have a um favorite.  I do know that there are tons of resources out there for both schools.  But what I have been hearing and I think this is something I wish I had known and my parents had known is that I have heard some deaf kids go to both schools.   So deaf kids would go to the deaf school for um all the activities like gym, lunch, art and whatever else there may be but anything anything educational they would go to the public school.  And do um science, math, history, English, with the teacher of the deaf and interpreter.  So they had the best of both worlds they actually were able to.  And that only works if you lived in an area that had a deaf school close by.  And I have heard great things about it.  I don't know enough about it but I do know that that is something that is growing rapidly growing in this deaf community.   I hear it's very popular and it really gives the child a good balance between the hearing community and the deaf community.  So they get to have deaf and hearing friends.  And so if I had the option I would have done I would have actually done that.  I think that would have helped me a lot trying to find my deaf identity I guess some sort before college. But you know I didn't find it until I got into college but if I had to choose I would have done both.  But really at the end of the day everybody wants to do what's best for their pers for their child, for their friends, for their family to have the best education and be successful in their life after high school, after college.   And so my parents did that for me to make sure that I was successful and today I am.   I like to say that I am successful because of that.   As much as it hurt them they had to pull me out and took me away from my socialization with my deaf friends, we still found a balance to so finding deaf friends on the weekends and doing pool partying to go in bowling games you know bowling alleys and do whatever we can do to meet the balance of hearing school and a deaf community.  

Crystal:  38:24
Yeah.   So I think that that's something that's really important because I know with my kids deaf the deaf community is not really around them at school you know.  They um, Samantha a little bit more than Luke because they go to different mainstream schools, you know which is a whole different topic,  but they um , they are not exposed to a lot of deaf and hard of hearing kids.  And so they're they have a great education, they're doing great in school and all that stuff but what I found is that there was socialization was really lacking.   And when I introduced them to the deaf community even in the form of like just summer camps where over the summer we would go they would go to a deaf camp for a week,  um you know they would come back and they'd be like wow you know I'm not the only one.   I'm not the only deaf kid.   Because it can feel really lonely in a hearing school if you're the deaf you're the only deaf kid.  There's no other kids in your school that have this accommodation.  Nobody else wears hearing aids and even if they have hearing friends.  Like um you know one of the things that my son always says is nobody really actually understands. Like I have friends who you know they're accommodating and they're great and some of them even keep hearing aids you know hearing aid batteries around for me and you know and things like that, but they don't actually understand what it's like you know.  And so I think that you know that's a piece that a lot of families miss is that if you do feel that being in a mainstream school is where your child belongs you need to supplement that and at least get them around something that resembles somebody like them.   

Crystal  40:02

So you know school is is difficult with the whole concept of bullying and making friends and all of that kind of stuff.   Um so you know I guess the my next question of going along with the whole school thing was,  did you ever suffer for that?   Because that's a lot of a lot of parents fears,  like that's one of the first things that parents will say to me in my you know in my experiences is, Is my kid going to be bullied?   Are they going to end up being being the outcast?   And will they have friends you know?  So what is your experience with that and if you were bullied or had trouble making friends how did you overcome that? 

Stephanie: 40:40
 So I think every kid or I would like to say every individual on this earth is going to be bullied at least once.   Um I yes,  I was bullied in middle school, I didn't know it um.  So my name is Stephanie and they used to call me deafaine um.   I did not know it because you know it it it didn't make sense to me at the time and I did take that personally because I wanted to be called Stephanie.   I would,  I did not want to be singled out.   I tried so hard not to be single out that I would join clubs and would do a sign language club,  I would join as many things I could think of to try not to be bullied.   But I was at the - that was the only thing I had only ever faced but I  think as I got older in high school these kids knew me.   And I think they just kind of sweeped it under the rug and be like oh there's that there's that deaf kid and you know she just kind of singled herself out.   I even did swimming in high school and tried to really make friends but it was still definitely it was still tough.   I had two a high school friends, unfortunately we're not  friends as much as we used to be,  but they were the two people I could really depend on and say hey listen I'm having a really rough day I just need you to be my friend for a minute and just kind of you know hear me out.   And so they were they were those friends and I think it's just matter of trying to get your child involved in something that maybe they may change that perspective.  I think the only reason why they did that was because they didn't they don't know me.   They don't know me well enough.   They don't know what I was capable of in middle school.   I was still very new in the hearing community too.   At the time in middle school,  after being in the deaf contained class you know with a bunch of deaf kids, so it was new to me.   It was new to them.   And this is back in you know 1990s the ADA didn't get approved until the year I was born in 1990 so it's all very new.   It was still very new to us,  like what was an interpreter? What was the teacher of the deaf?  What does that mean?   Like what do you mean talking about accommodating this person?  What do you mean talk about accommodating closed captioning.  so it makes sense why it was that back then but you know I think again at one point somebody will be bullied one way or the other.   

Crystal:  42:52
 Yes and honestly we still have some of those issues now.  Like it's it's 2021 and I you know we still have people who are like what what's the teacher of the deaf?    Or oh do we do they really need a sign language interpreter for this yes?  

Stephanie:  43:09
yes we do yes 

Crystal:  43:11
We do yes we do.   Okay so we've talked a lot about your childhood,  so let's talk about the now.   You are working in corporate America.  You are a successful independent adult.  Um you're a homeowner. You're you know you're kind of rocking adulthood.   What are the biggest challenges that you have right now with being deaf?   Do you have challenges or are you are you like I got this I'm good?  Do you feel like there are things that you're constantly like hitting a wall with or are is everything good?  

Stephanie: 43:46
 So I some days I'm good.  I am like you said I am rocking it and I'm having a good time and I really don't care about what people think of me because you know what at the end of the day they're having the problem not me.  If they have a problem with me they can come see me and we can talk about it.  But but there are some days where I just I'm emotionally mentally exhausted from trying to be the person I am today because I'm constantly advocating myself.  Which is something that our parents, my parents mold me into to advocate for myself all the time.   And Does it get tiring to do that every day to make sure I have an interpreter for a doctor's appointment, to have an interpreter for a town hall or a big meeting.  That I have to have tell somebody I need you to move your mask especially with  covid, I need you to move your mask and talk to me.  I need you to speak into my phone.   I need you to do this.   I need you to do that.   I go home and I will cry because it's so difficult to constantly do this all the time.  And one day I just say you know, one day I should say I give up.   I don't want to try today.   I don't even want to go out because I've done that for so long.   And you know one day, I just you just need to crash.   You know it's kind of like working out.  You work out for six days in a row but your body just can't take any more workout so you crash for one day or two days and then you get right back on.   You get back on the elliptical and you're like you're rocking it . Okay it's the same way for me.  Um working where I work now. I work with a bunch of hearing people.  So and they also tend to forget that I I am deaf.  I do speak so well.   They but you know they have been much better with looking at me and making sure that um they understand me and they know a little bit my history because I've talked to them about it.  But again you know it's always a constant struggle.  I need you to look at me when you're talking to me.  I need you - I don't understand what you're saying can you write it down for me.   Because there are times where they say something and I'm like I'm not understanding what you're what the term you're saying.   Then they write it down I'm like oh that's not what -  I wasn't I didn't comprehend it at the time so it it's a constant struggle.   You know  I've learned to just kind of wing it every day because I am mentally invested in trying to make sure our communication is successful.  I'm always wanting to make sure that I am you know being said and I understand them.   But you know again it is exhausting.  But you gotta wake up every morning because it's a new day you know.   Yesterday and tomorrow's not guaranteed.   So I like to wake up in the morning and just say you've got this.  And if you're tired, you know take a breather or two and just get walk back right back in and be that boss lady and be like you got this you know.   You can't - there are some days where you just you just wing it you just kind of wing it.  

Crystal: 46:34
 Yeah no and I I think that's something that I've heard from a lot of deaf people.  My kids are the same way.   They're like it's just too much today.  I'm tired.  They they work really hard to pay attention all the time.  Just the attention itself you know of focusing on an interpreter.  Or I mean,  they don't have the luxury of just like dozing off in class.  They have to focus the whole time they're in class.  And so it's like all right I can't have a down day where I'm just gonna put my head down and pretend I'm listening to the teacher.  Like they don't have that luxury.  So yeah I think that that's listening fatigue is what they like to call it.  

Stephanie:  47:10
yep yes it's so true.  And  it's something that you know when a lot of people say oh you know it's probably easy not to hear anything.  But honestly lip reading speech itself is already  work and then for me to go home.  I mean going on out my eight hours on my day doing that and now let's say someone goes let's go for happy hour.  Oh that's just gonna make it twice it's hard.  Because now there's so much sound.  There's people constantly moving around the room so I can't keep up with one conversation.  I may be the fourth person in the group but I now have to constantly move my eyes from the person to the left of me person, in the middle of me and the person to my right.   So I mean if you're having a hard time understanding your friend imagine how hard I am understanding them.  Sure yeah on top of that lip reading and sound on top of that yeah.  

Crystal:  47:53

Yeah.  Almost impossible.   

Stephanie:  47.55

very very 

Crystal: 47.57

Okay, so we have talked about the deaf community a little bit and you know I've told you before that you know  you are my daughter's deaf mentor.   I've talked to other deaf people in in the past and I was like no way no how do I want this person to be a deaf mentor because they have been very negative towards hearing people and  have had very very strong feelings about hearing technology.  And so tell me about your experience with the deaf community.   What why is it important to you what do you get out of it that you don't get from the hearing world?   And how do you navigate being away from those negative people?  That's a loaded question I know. 

Stephanie: 48:44
 
That is a very loaded question.  I'm not making sure I'm trying to get my point across but also for people to understand where I'm coming from.   I am happy in both worlds but you know the deaf community is extremely important to me um not because of what I think about them or what they think about me.  It's more so of a sense of home, homeness.  I'm speaking the same language they are.  I can take my hearing aids out and not have to worry about being misunderstood.   There's no miscommunication.  I don't have to work twice as hard as a hearing person because I am constantly reading their lips.  This person is just you -  just kind of go together like jello.  Like it just flows and you kind of go with the waves and just kind of float.  And so it's important to me that I am in that community  because I feel like I belong.   I don't feel like I have to constantly struggle to be in a community and I'm not singled out.   You know I have many hearing friends but I also have many deaf friends and I can walk in a room and be like I can talk about anything.  In a hearing room it's more so of like okay who has the better lips so I can lip read?  

Crystal: 49:58
Who doesn't have a beard.

Stephanie: 49:59
Yeah like yeah you know, I do.  They have you know what type of lips do they have?  What type of teeth do they have?  Do I really you know I really have to think about who do I really want to talk to and how long do I want to listen to -   I'm not listening but read them okay.   And show their facial expression knowing their eyebrows, their cheeks, their lips, or teeth.   Whereas a deaf person I don't have to worry about that because we use our hands you know.   Of course we're moving our mouths but you know most of the majority of the conversation is all in sign language so I'm using my hands more than anything.  So it's important to me that I have my deaf community.   And I actually just recently moved to the DMV area for that reason.  I used to live not far from Crystal and I moved because I needed that for me. And it was actually one probably one of the bravest things I've ever done other than going to college six hours away from my parents.  

Crystal: 50:52
And you did it in a Covid year. 

Stephanie: 50:54
 I  moved like three months before Covid hit and so that really it was a tough year.  But now this year I've been making up for it by going out every weekend with all my deaf friends.  But it I just I could walk into a room take my hearing aid out and just be like I don't have to hear anyone I could just sign.  And  I can go on we can go on for hours and hours and hours because the conversation never ends.   Because in this time and age comparing to 100 years ago people had to write on paper and they had to mail everything.  They didn't have phones.   We didn't have text messages.  We didn't have facetime or zoom.  So they would have to go bang on somebody's door to even sit down and talk and then they'll have to walk all the way home if they don't have a car.  So we're really trying to take the time to talk to our friends our deaf friends in person because like you guys you can probably hear.    You're probably listening to this while you're driving.  You're probably listening to this while you're on your lunch break.   I can't listen in.   I have to watch in which is more work.  I can't talk to my friends while I'm driving oh halfway across the country.   I can't talk to my friend when I'm on my way to work or a doctor's appointment.   I can't do that because it takes my eyes off the road. 

Crystal:  52:06
 Yeah and if you're listening to a podcast as a deaf person you're reading it really. 

Stephanie: 52:10
Yeah yeah like you know you you can put you can probably be cooking right now and listening to this.  So we don't have that advantage.  We don't have that accessibility.  So we spend as much as we can. You know at a certain time.  

Crystal: 52:22
Yeah and I have found that in in my experience, and not every hearing person has this experience, but the deaf community is is fun. 

Stephanie: 52:32
 You'd be surprised what you find.

Crystal:  52:36
Like it's fun. I mean of course there's there's some weirdos in every culture but like they're a fun group of people.  They really are.  

So we have been talking for a really long time so I'm going to wrap this up because we could go on forever.  Like we could sit here for probably five hours and just sit and talk about all this stuff.  So let's wrap it up.   I'll have,  I'll ask one final question for you.   So what would you tell like deaf kids and their hearing parents that you wish you would have known or you wish their parents would have known to kind of make this journey easier?  

Stephanie:   53:14

That's another loaded question too Crystal. Um I think listen, to listen to what your kids want if they want to take their hearing aids out let them.   Ultimately at the end of the day it's their decision. If they want to go to a deaf school talk to them about it.  You know make your -  have options don't limit yourself to one thing you know.   Growing up with my parents I used to tell my parents - don't sign to me it's embarrassing.   But at the end of the day I kind of wish that they could continue that a little bit.   Try to really you know if you're looking for a balance between the hearing and deaf community find it.   There are tons of resources out there.  I know there are.   Trust me there's too many.   It's just a matter of where to start you know.  Start with start off with your area and then kind of branch out from there.  But really just no matter what you do your kid's gonna struggle.  Regardless. I'm sure yourself is struggling with something.   Everybody is going to.  They're probably struggling with you know trying to make friends.   They're probably struggling in school it's totally normal.  I've struggled to make a friends.  I've struggled in school.  I'm still struggling today as I mentioned. It is a tough life out there.  You just kind of have to wing it and be a boss lady.   If you're listening for this for your child just it's okay to breathe and not know what to do.  To not know where to go.   Talk to people and I think the one last thing I would wrap up with is if you have a child and you're not sure where to go and you're not in an area where there's a deaf community find a deaf mentor.  That helps a lot.   I think that I wish I had somebody like that.  so I could look up to you and talk to you and not have to feel like I'm singled out all the time.   But now that I'm here for Crystal's daughter you know I think it helps a lot because  I  see myself a lot in her growing up as a child.  

Crystal: 55:07
Oh yeah and you know it's been really great.   I've been so grateful for Stephanie because you know there's some things that she can talk to my daughter about. That even though Samantha and I are really really close um I'm not deaf.  I don't have that perspective.   I can understand all day long but I  don't fully understand and I get that.  And so it's really great to have Stephanie in our lives to be able to be like I got this you know.  

Stephanie: 55:32
I got this.  
Crystal:  55:34
Okay so obviously deaf people are all different and all have different thoughts and opinions but I think that you know you have given us a really great place to start.   Thank you for sharing your perspective with us.  If you found this  insightful I encourage you to keep listening to my future episodes coming up.   Today I think we did a really good overview of some of the issues surrounding the deaf community and I am so thankful that Stephanie was able to join us today.   I promise that future episodes will be diving deeper into some of these subjects and getting into some different perspectives.   If you want to hear more like and subscribe to my channel and keep listening to the Other Side of Deaf.   For now I'm signing off.