Capital D / Lowercase d

I was in middle school and I remember things had gotten more difficult.  I was in band and in chorus and things just felt slightly different.  I wasn't sure how to tell anyone or how to explain it to anyone.

Then they had the school hearing test, and I specifically remember the look on the nurses face, that she was going to have to tell me that I failed the hearing test completely.  I didn't pass a single bit of it.  I didn't hear a single beat.  Not a single beat in that hearing test.  And I remember the look on her face was devastation.  Because I feel like this wasn't something that back then our county had really dealt with.  There weren't that many deaf kids or deaf students, and nobody went about it the right way.  So she told me, I didn't know what to do with the information.  I went home to my parents, and they were just kind of like, "This is a new adventure!"  And I was like, "Oh...an adventure.  How fun."  Because at age 13, no one wants to hear that you're probably going to lose all of your hearing, or at least a little bit of it.  But at that point, I had lost a lot.

 

I remember my first audiologist.  She was wonderful, I loved her.  But my father was openly upset with her.  He said she was too young and they needed better for me.  And I remember feeling in that, in these very first moments of this whole journey, I was not being heard.  And I had said, "Well, I love her.  She understands me.  She does what's right for me,"  and everybody else said, "She's not right, we're switching audiologists."  So I was just like, "Okay, I guess."  That was my first experience of advocating for myself and not being heard in that moment.

 So then I got hearing aids in 8th grade.  And I was so adamant about not wearing them for up to almost two years after that.  I didn't even think about touching them.  I didn't open the box, I didn't do anything with them.  I had met my best friend, LA, who is my soul sister.  She is everything.  She is my sister, she is a part of my family.  From the day we became friends, she basically lived at my house and I lived at her house.  There was this one day where she went into my closet and took my hearing aids out and said, "You're putting these on.  We can't do this any other way.  You're putting them on.  You have to.  You're failing your classes, let's do this."  And she doesn't remember that at all, we actually talked about it a couple of weeks ago.  I remember putting them on and being like, "I can hear everything!  I can hear everything!"  I hadn't worn them at all before.  I was stubbornly trying to "fight the man" and not do anything that I really needed to do.

So I put them on, and I started passing all of my classes in high school.  Before that I was failing.  I failed Spanish because all of the exams were oral.  Every single one was an oral given exam, so I failed.  Straight through.  But overall, school got better.  And things got better.  I remember my very first 504 plan meeting with all of the teachers, the county psychologist because Westminster didn't have one, and my case manager.  I remember being Mr. B being my case manager, and he was the best advocate out of anyone I had.  He was my go to person.  He helped me understand how to take exams better, he let me retake exams when I did terribly on them, he was the best advocate I could have had.

I remember in that moment, in the meeting, I was sitting at the head of the table.  Every single teacher and person was fighting about what I needed.  Nobody was asking me what I wanted or what I needed or what was going school better for me, or what was going to make life better for me.  And one of my teachers at the time did not agree with how everyone else handled it.  After the audiologist talked about how you get hearing fatigue and you get really tired and you get migraines and headaches when you're fighting so hard to hear everything, this teacher says, "Well, I just catch her looking out the window for most of class and she doesn't really pay attention and I find that this is an issue."  And I remember being like, "What?!  I'm trying to focus in class.  I can't focus because I can't hear, I can't do any of those things."  And just the "I can't" part took a big toll on me.  My mom ripped her a new one, from what I can remember.  She looked at her and said, "Did you even listen to the audiologist?  Did you hear what she said?  Did you hear that she struggles?  Did you hear all of these things?!"  In that moment, I hadn't spoken.  I still hadn't said a single thing.

Then the special education teacher says, "I think she needs to be in special education classes." And I looked around the room like, "We need to stop this conversation.  I'm in all honors classes, I don't need to be in special education."  It came down to all of these things that other people thought of me, and no one was asking what I wanted.  So in that moment, we decided that an FM system with a teacher wearing it would be best.  It hooked up to my hearing aids and the teacher wore a microphone that went directly to my hearing aids.  That was interesting...there were a couple teachers who would forget to turn it off when they went to the bathroom, there were phone calls to husbands and wives that I heard, and I could hear them so clearly because it was a direct access line to my ears.  And I would be in class when these things would happen!  I'd be thinking, "Is so and so on the phone?  Does she know I can hear her talking about her cats?"

 Or they would take it off and leave it on the projector, which led of course to bullying.  Kids would pick it up and say obscene things into it.  They would be like, "Can you hear me now?!" and a whole slew of other things that I didn't want to endure in high school.  No one would want to endure that.

Moving past that, I was angry.  I didn't know or understand how to deal with any of the pain that I was feeling.  It felt like nobody understood me.  When my mother cried at my hearing appointments, I selfishly felt as if she shouldn't have.  Because this was my pain.  This wasn't hers to hold.  And as a 26 year old I understand now how selfish that was of me, that she is allowed to feel pain for her daughter, and that it's okay that she was upset.  But in that moment as a teenager, I felt as if it was about everyone else's feelings and never about mine.

 

I tried to numb the pain any way I could.  And that didn't go over well at all for me.  I tried every single thing I could.  I don't think anyone around me, my friends or my family, knew how deep into a hole I had been because I was so good at smiling every day and joking about it and being fine.  Being the deaf person that everyone's friends with that everyone knows and loves, but I didn't feel as if anyone knew me, even my friends.

College rolled around and I went to Towson, and my entry into that was rocky also.  They tried their best.  I met one of my best friends who was an interpreter for me for every single class I had.  He was amazing.  He helped me make friends because at this point I was completely deaf.  I didn't know what to do.  My family back in high school had learned sign language a little bit, we had had some lessons.  So that was my little safe space in high school in high school for a while, being in ASL classes.  It was very welcoming but also you were the token deaf kid in the sign language class.  And not necessarily picked on but always used as an example by the teacher because the teacher knew you so well.

So in college, the first disability student services person I had was awful.  She didn't know what she was doing.  She told me, "You can either have a note taker, an interpreter, or the FM system, but you can only have two out of three.  That's it.  You can't have all of the accommodations that you want or need, it doesn't work that way."  That was shocking, because I was by myself in the office with this woman I had just met and I was thinking to myself, I can only have two of the three things that are going to help me learn?  Since the FM system wasn't working, I chose CART first, which was someone sat in the room and typed everything as it was happening. But it was two sentences behind at most so I never participated in class discussions or got credit for that.  None of the teachers never understood why I wasn't participating in class discussions, and I was like, "Well I'm two sentences behind and if I try to interject it doesn't work out.  I don't have the information, so I can't give my opinion."  I never got credit for class discussions ever, so at that point I was like, "What else can I do?"  So I tried an interpreter.  My very first interpreter was this woman who opened my eyes to all of the different ways of Deaf culture.  You could be capital-D Deaf, you could be little-d deaf.  You can have a cochlear implant, you can use hearing aids and be capital-D Deaf.  There were all of these different ways that you could be a part of Deaf culture, and I never knew that.

My father had always said this one sentence that I truly, truly believed until I went to college.  He said, "You and I don't fit in anywhere.  We don't fit in the hearing world, we don't fit in the Deaf world.  We fit in our own world, and it's lonely."  And that was a hard thing for me to swallow, that he's telling me as a thirteen year old that I'm going to be alone for the rest of my life. That I'm never going to fit in anywhere.

For the first three years of college, I used an interpreter.  I met some of my best friends.  I learned ASL fluently, I dove head first into Deaf culture in general.  I signed up for a Deaf Studies class.  I remember I was one of two people that were deaf in the class.  I remember the teacher showed us a fear mongering video of cochlear implants.  It was from the 90s and it was a whole bunch of people with half of their faces paralyzed saying, "I did this, and now I'm paralyzed.  And this is why you shouldn't do it."  And half of their face was drooped down, and I couldn't believe it.  I was stunned.  This was something that everyone in my life had said was an option for me and I never thought it was an option because they weren't that widely accepted in Deaf culture at this time.  Then this fear mongering video...and I looked at my interpreter and he was like, "They're nothing like that!"  And I said, "But look at all of these people!  Their faces are paralyzed!  Everyone is paralyzed!"  And he said, "E, that's not going to be you.  If you choose to do this, that isn't going to be you.  You're going to be fine."  And I was like, I'm never doing it.  I decided I was never getting a cochlear implant, that I was never going to give myself the gift of hearing.  That was how I felt about it.

Four years into college, I felt so depressed, isolated, lonely, and disappointed with my college experience that I decided to take a break from school.  And one of my gymnasts father is an audiologist and a surgeon, and I went in for an appointment just to get my throat checked.  And he asked me, "Have you ever thought about a cochlear implant?"  He just threw it out there, while everyone else around me had been afraid to talk about it because they knew my stance on it was, "No, no, stop talking to me about it."  It threw me for such a loop, and it just so happened that the interpreter that was with me at the doctors office that day was one of my school interpreters.  She said, "You realize that's inappropriate to bring up to someone who says they don't want it."  And he goes, "I don't know what she does and doesn't want, we haven't discussed it.  So, would you like one?"  And again I didn't even know what to say about this.  He told me, "I do these on 80 year old people all the time.  You're healthy, you're 23.  Nothing bad is going to happen to you."  And it just really got my gears going.  I was thinking, "I could do this.  I could be a hearing person.  I could be happy again."  I was so deep into a hole, everyone realized it at that point where I just needed to quit school and focus on myself and come back to it later.

I went through all of the steps of the process.  I went to Hopkins, but they didn't provide interpreters for me, which was bringing a huge class action lawsuit against them when I had talked to other people within the Deaf community.  I was told that it was a standard and they were choosing to not provide interpreters for people who were getting cochlear implant because they felt that we didn't deserve them if we were choosing to be hearing.  That happened to me the day of surgery.  Someone was supposed to be there and they weren't.  I was back in the surgery room by myself and without anything with me.  And someone did show up, they were just late, but I had felt like in the moment that they were doing the same thing to me after my mother and I had fought so hard with human resources.  But we fought so hard that someone showed up.

After the surgery, the recovery...I wouldn't wish that on anyone.  I don't know if it's just me being allergic to almost every medication in the universe or what was going on, but it was awful.  I remember crawling around the house because I was struck with such terrible vertigo that I couldn't get up.  I couldn't walk anywhere, I was crawling around, throwing up...I just felt like it wasn't worth it.  It was two weeks of that.  And I tried to get up and had to hold onto someone to just walk around the house.  I tried to do 200 steps every day just to rehabilitate myself, and I was even told that it would be a two year rehab.  Not just the vertigo and the walking, but the hearing.  You had to do your hearing exercises and practice every single day.  But the moment that made everything worth it for me was when a child behind me said, "Ms. E!" and I turned around.  She said, "You just heard me for the first time!"  And I couldn't believe that I could hear in that moment.  She was crying, this five year old that I had known since she was two was outwardly crying because I had heard her for the first time.  And it was just the ultimate moment of, "I made the right choice."  I know I did this for myself, but it was just so evident how it impacted everyone around me as well.  It was a hard decision because I felt as if I was betraying my dad who had chosen to stay deaf for his entire life.  He had said, "I will not fix anything.  I will not change anything about myself because I am happy with myself."  I've learned now that it was fully my decision.  I went from hearing to deaf to becoming a member of this Deaf family that I had babysat for years.

To explain, being capital D Deaf, means that you identify solely as deaf and you are a member of deaf culture.  Being lowercase d deaf is a way to describe your hearing level and status.  I always kind of floated between the two.  I never really fully identified as a part of the Deaf community.  It has gotten increasingly more inclusive.  I just never knew that you could have all of these different things done, or identify as "hard of hearing" or whatever you choose.  I personally have always thought that "hearing impaired" is an insult.  I've always said, "I don't want to be called hearing impaired, I'm not impaired.  I can hear, I just hear differently."  Even when I was completely deaf I still said, "You don't need to call me hearing impaired, I'm deaf."

Maybe six months to a year or so after my implant procedure, the very capital D Deaf mom of the boys I babysit had told me she was going to get one.  And she said, "There are so many good aspects to what I feel you have gone through, you've inspired me to do this."  I couldn't believe that, that I had inspired someone in the Deaf community to do something for herself.  She was there the first time I heard her sons, and that was an overwhelming fountain of emotions for everyone involved, because I had had them from nine months and three years old for the oldest.  And this was three years later, and they were a lot older.

All of those things we feel....I'm not bitter anymore.  I was bitter for the longest time.  I was bitter and angry and vengeful and I didn't know where to put any of that outward energy.  And I now know that what I'm doing with children is what I'm meant to do.  I'm meant to work with kids, I'm meant to inspire children, I'm meant to help children become their best selves.  And that to me is a win, to realize that what I'm doing is right...it's the best feeling.  And I know that you can only be on a journey with your self, but I know that every single person I've worked with has watched me go from this angry, way down, unhappy person to where I am today.  And I know that I've downplayed the aspects of surgery for myself, but I also know that people around me have played up all of the aspects of what it has done for me.

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3 comments

Joanne E

You are an inspiration! …but you’ve always been that to me—even before your surgery. …wise beyond your years. You are a special person to me. So glad you shared all of this….you’ve been through so much….xxxooo 💪🏼💪🏼💪🏼

Da’el Clapperton

Just good stuff Emily, very inspiring!:’)

Barbara Dubik

I love you. Amazing post. You rock my cousin, you rock!

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