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This post has nothing to do with drugs or anything you’d expect from Camden, so sorry to burst your bubble if that’s what you were looking for.
This post does still have a very special story about Camden though. I present to you, the newly revised (and most difficult chapter to write) of my novel, “Follow the Yellow Brick Road”.
Chapter 1: Follow the Yellow Brick Road
Loss. It’s one word with a multitude of feelings attached to it including despair, emptiness, and hopelessness. For some people, loss means nothing. You can’t lose something if you’ve never had it to begin with, right?
That’s how hearing loss worked for me. My mother, on the other hand, can remember the exact moment when she discovered my hearing loss.
I was two years old and my mother would call out my name, but I never responded. The doctors thought it was just a phase or a case of the “terrible twos”.
“No, I know my daughter. She can’t hear me,” Mom would argue.
When my mom banged a handful of pots and pans together behind my back and I didn’t flinch, she knew something was wrong. Defying the doctors, my mom took me to see Miss Terri, an audiologist at Cooper Hospital in Camden, New Jersey.
After performing a series of hearing test, Miss Terri confirmed what we already knew: I had profound hearing loss.
The best way to treat it — or at the time, the only way to treat it — was with hearing aids. I needed them in both ears.
After being diagnosed with profound hearing loss, I made the journey to Camden once every two weeks for speech therapy lessons. My mom and I would drive from our small condo in Washington Township to the big city every other week. On our way in, we’d pass endless food and street vendors selling everything from hot dogs to pretzels and even random t-shirts. It amazed me how at 9 o’clock in the morning people would still be out selling lunch foods. Everyone always had a smile on their face and seemed happy to be working.
“Mom, I want to live here one day. I love the city,” I said on our way in for my appointment.
“That’s because you don’t understand what this city is really like. It’s not safe.,” Mom explained. I’d understand it more when I got older and would see individuals hauled off by police for God knows why on more than one occasion. But as a child, it was a magical place with audiologists and speech therapists that thought the world of me and were helping me to hear and speak well.
Cooper Hospital had many departments and was easy to get lost in. Fortunately, they developed a system to help speech and audiology patients find their way around. By placing strips of yellow tape on the floor, patients could simply “follow the yellow brick road” to their appointment. Every time I had an appointment I knew to look down at the floor for that yellow tape and I’d sing along and skip to the tune of, “Follow, follow, follow follow follow the yellow brick road!”
Since speech and hearing worked so closely together, my appointments were run by both my audiologist, Miss Terri, and my speech therapist, Miss Vicki.
Miss Terri would always start my appointments by testing my hearing. She would lead me into a gray, audiology testing booth that was no more than 50 feet wide while my mom waited and watched outside in the hall. Miss Terri would then crookedly place a special pair of headphones over my ears and hook some wires up to my hearing aids and hand me a button.
“First we’re going to test the beeps. Push the button whenever you hear a beep. We’ll start with your left ear first before moving to the right,” Miss Terri explained.
I’d smile and nod and occasionally give a thumbs up to let her know I understood. I loved pressing that button. It felt like I was playing a video game where hitting the button was the equivalent of shooting the monsters and bad guys and freeing the victims. I never even noticed that the button didn’t get pushed half as often as it should have.
Once that portion of my hearing test was completed, I would be given a series of words that I’d have to say back.
“Say the word hot dog,” Miss Terri said.
“Hot dog,” I answered.
“Say the word baseball.”
“Say the word airplane.”
“Say the word ice cream.”
“Terri, I’m sorry but I have to stop you,” my mom interrupted.
Miss Terri and I both looked up. I was doing so well with the words, what could possibly be wrong?
“She’s not actually hearing you – she’s reading your lips,” my mom said.
“I can fix that,” Terri said as she grabbed the sheet of paper with her word list.
“I’m going to cover my lips now. I want you to focus on what you hear, not on me.” Miss Terri said. I was nervous, but knew I had no choice but to try my best. I nodded in agreement.
“Say the word kite.’
“Say the word chair.”
“Say the word sub.”
“Say the word third.”
“Say the word ran.”
I didn’t know what Miss Terri was saying, I could only guess, but I knew I was wrong. Thanks a lot, Mom. I thought.
When Miss Terri finished with the hearing test, it was on to either Miss Vicki for speech therapy where we would do different activities. One of my favorites involved using what I liked to refer to as the “magic mirror”. It was a long, oval-shaped mirror that rested in a tan wooden frame on wheels.
“Ready to use the magic mirror?” Miss Vicki asked.
“Yes!” I would exclaim.
“Okay. Let’s practice our “Sh” and “Ch” sounds,” they’d say. “We’ll start with ‘sh’ first.”
“Sh!” I said. It was easy for me to think of the sound as a syllable, as if Miss Vicki was the teacher and I the student, getting yelled at for talking.
“Very good!” she said. “Now, I’m going to give you a word. Can you say “choose”?
“Shoes!” I said.
“No, not shoes like on your feet. Choose like when you choose something to eat,” she said.
“Shoes!” I said.
“No, look in the mirror. You want to move your tongue up a little bit and touch your teeth,” she said.
“Tooze,” I said.
“Try again. Remember, you only want to touch your teeth a little bit, not a lot.”
“Choose?” I said.
“Yes, that’s right! Very good! Want to take a break and draw on the magic mirror?” she asked.
I nodded yes and reached for the bucket of magic markers, choosing the pink one first, my favorite color. I drew a big heart on the mirror with several smaller hearts for arms, legs, and even eyes. My little heart person, my favorite thing to draw.
When I finished my masterpiece, Miss Vicki would continue with our lesson.
“Okay, Kimmy. We’re going to play a game now,” Vicki said. I didn’t have the heart to tell her I hated being called “Kimmy”.
“You’re going to take this ball and throw into the trashcan across the room. But as you throw the ball, I’m going to give you a word to say and I want you to imagine your voice going with that ball. As you throw the ball you’ll want your voice to get louder. Got it?” she said.
I nodded. I wasn’t sure if I really understood, but the idea of throwing a playing a game sounded like fun. The game sounded like basketball, a game I’ve always enjoyed watching my dad play.
“Okay. Your first word is suitcase,” she said.
“suit case,” I whispered as I threw the ball.
Vicki threw the ball back to me. “Try again,” She said.“Remember, Mr. Loud Mouth. Your voice travels with the ball.”
I took the ball back from her and paused as I remembered Mr. Loud Mouth. “SUIT CASE,” I said.
“Very nice! You got it!” she said.
Being a toddler with profound hearing loss was easy. Nobody asked any questions about my hearing loss or questioned anything that I did or didn’t do. My parents couldn’t have been more supportive and understanding of my hearing loss. My sister paid no mind to it. And my audiologist and speech therapists couldn’t help me enough. I was a toddler without a care in the world. The only thing that made me different from any other toddler in the world was the fact that I couldn’t hear. As far as I could see, I was one in the same with the rest of the hearing world. Unfortunately, as I’d learn in my grade school years, not everyone saw things that way.
A few weeks ago I went to a cochlear implant support group. I’ve had some mixed experiences with these support groups. After attending my first one, I vowed I’d never come back. However, I since changed my mind and even had some pretty good experiences since then like the time I went to the cochlear implant support group about hearing preservation (and met the incredibly attractive Dr. Pelosi…but that’s another story ;)).
Since they have been getting better, I decided to make an effort to go to them on a more regular basis. The topic for the January 7, 2016 meeting was on training your implanted ear (or in my case, ears). Med-El was sponsoring the meeting and presenting and discussing their new training cds and books. Since I was just recently implanted with my second cochlear implant, I thought this would be a great meeting for me to attend.
I’ve always been a little skeptical of Med-EL to be completely honest. When it came to choosing a cochlear implant brand I narrowed my choices between Cochlear and Advanced Bionics. Med-EL was the only brand I was sure I DID NOT want because I felt they were too outdated. I always leaned more towards Advanced Bionics. Jefferson didn’t give me a choice so I was glad they chose Advanced Bionics for me, naturally, as it’s what I would’ve chosen anyway.
I had some faith in Med-El for this meeting though. I mean, aren’t all speech therapy training supplies essentially the same? How could you mess that up?
The presentation was given by a woman who worked for Med-El and who I believe was also a licensed audiologist at John Hopkins. She had one of her patients with her who was upgraded to a new processor and/or had a new mapping done that morning. They went through some words and she tried to demonstrate how the cochlear implant is a process and it’s not perfect, he might still mess up. It was a nice presentation, pretty accurate.
She also took some time to go over the new Med-El training book, cds, and online resources. She had a copy of the book. It was very expensive to buy (like $70) but said she’d leave a copy with the group and that we could make copies if we wanted, which my mom and I ultimately did. The book has been incredibly helpful/beneficial for us. That alone made going to this meeting worth it.
Towards the end of the meeting she went back to her earlier point on how cochlear implants help deaf individuals, but it’s not a miracle cure. We’re still deaf. She then used one single word to refer to us all that ruined her entire presentation for me:
She told us we were all handicapped.
I was enraged. We are DEAF but DEAFinitely NOT Handicapped!!!!!!!!!!!!!!!!
I didn’t just let this go, either. I made sure to talk to her at the end of the presentation to let her know I didn’t like that she told us we were handicapped. She apologized and said she knew and that she was really referring to children with multiple disabilities like those who are deaf-blind, deaf and autistic, etc.
It was a nice try, but I didn’t buy it because there wasn’t a single kid there and 90% of the adults lost their hearing later in life. I’m pretty sure none of us had multiple disabilities…it was just her cover.
There are few things in life that infuriate me more than being referred to as being handicapped because I am far from being handicapped. Most of us deaf individuals are always labeled as being handicapped and for most of us that couldn’t be further from the truth.
Deaf individuals like myself face a lot of hardships and much discrimination. We have to fight on a daily basis to have our voices heard and to be viewed as being equal to our hearing counterparts. We get denied employment, entrance into public schools and universities, and most of society tries to exclude us on the grounds that we are “deaf and dumb”.
I am a lot of things in life. I am far from perfect. I have done dumb things in life, but I am not a dumb person and I am far from being handicapped. I have NEVER once allowed my hearing loss to get in the way of my success in life.
I’m really not that much different from a hearing person. I don’t know ASL. I used to lipread (I still do, but I don’t HAVE to anymore). I speak pretty clearly. While I did attend speech therapy as a kid, my speech has never been that bad to begin with. I went to public schools growing up (which my parents and I had to fight very hard for as the school thought I was handicapped when in reality I simply couldn’t hear…). I played on many sports teams and was involved in many clubs. I attended a public university and earned an associate’s degree and later two bachelor’s degrees. Now I am employed for a digital marketing agency as a manager. I have had this job for 2 and a half years. I speak on the phone on a regular basis for work. I have no interpreters or special accommodations. I am really no different from a hearing person.
Society is constantly trying to put a label on deaf individuals and make us feel like we are broken or flawed or not worthy of the same opportunities as hearing individuals. “Handicapped” is far from being an innocent mistake or simply “just a word” used to describe us; it’s become a nice way of telling us that we’re “not worthy”, “not normal”, or “not good enough”.
Deaf individuals fight the stigma and the misinformation and all of these stereotypes on a daily basis. It’s rarely an easy fight. And one thing we absolutely don’t need is audiologists and representatives from cochlear implant and/or hearing aid companies fighting against us and feeding into the stigmas and stereotypes.
These individuals should be fighting alongside of us. They should understand us more than anyone and want to work to show people how the deaf really aren’t that different than the hearing.
Also, as is the case for this woman from Med-El, if you’re trying to sell us cochlear implants, you should speak in a way that gives us hope. Training your cochlear implant and your ear to hear is no easy task, as you’ve seen in my last blog post. It can be frustrating and discouraging. Labeling us as handicapped isn’t going to help matters at all, but it could make things worst. When you call us handicapped you remind us that we’re different, but if we have a cochlear implant it’s most likely because we want to hear and be like those that can hear, at least to an extent. Calling us handicapped can put a damper on all of that because you’re saying we’re different, we’re not able of doing something the hearing can do — we can’t hear. But the goal of the cochlear implant is to gives us what we don’t have that they do have — the ability to hear! Calling us handicapped is basically a nice way of telling us to not work hard and to just give up because we’ll never be like them anyway.
The idea that the deaf are handicapped is a lie. It’s a myth. It’s a diversion of the truth. It is not at all right.
To quote King Jordan, the former president of the famous deaf university, Gallaudet, “The Deaf can do anything but hear.”
We’re deaf, yes, but DEAFinitely NOT handicapped.
Got that, Med-El? Good.