Cochlear Implant & Deaf Culture

This page touches on some issues that I’ve been asked to address over time concerning the cochlear implant and Deaf culture. Please keep in mind that this is my own personal opinion and experience. It doesn’t necessarily reflect the views of all individuals with cochlear implants or the entire Deaf community. At the bottom of the page are commonly asked questions. Keep checking back for more information and feel free to email any questions or comments to me at lyssie@bigfoot.com so that I may continue to contribute more information to this site.

I received the cochlear implant in June of 1999. Many people ask me why I went ahead and got it. Well, let me start from the beginning so you can get an idea of where I am coming from.

IMPLANT VS HEARING AID
What’s the difference? A cochlear implant is major surgery that replaces your damaged nerve and allows you to hear things you didn’t hear before. Hearing aids just amplify whatever hearing you already have. Think of your hearing like a piano. Once certain keys are damaged, you can’t hear those keys again no matter how loud you try to make it. The cochlear implant replaces those keys and allows you to hear them again to a certain degree. Hearing aids will never replace the keys, they will just make the other keys louder.

HEARING AIDS
My parents recognized that something was “wrong” with me and I wasn’t responding to sounds. A visit to the Dr reveled a severe hearing loss in both ears. How and why remains to be answered. At this point in my life, it really doesn’t matter if my hearing loss was from birth or the result of something else. For my 4th birthday I received hearing aids as my birthday gift, just what every 4 year old dreams of, right?

After getting my hearing aids, my father brought me to a very small, local amusement park. My absolute favorite ride was the roller coaster. However, this was the first time I was going there with hearing aids. Hearing sounds coming from the rides and the crowd was overwhelming to say the least. None of it made sense and to this day, still doesn’t! Being the stubborn little girl my father raised me to be, I went right up to the roller coaster and went on it. I did not like it at all. The story goes that I was screaming so much and so loud that they stopped the ride. After a few minutes of consolation from my father, I calmed down long enough to have him tell me to shut off the hearing aids and just enjoy the ride like I used to. The funny thing is I still do that to enjoy roller coasters today.

My hearing dropped again when I was 7,10,15 and 20. I had a progressive loss up until the time I got my implant.

EDUCATION

When my parents found out I had a severe hearing loss, the Dr informed them that I had enough residual hearing where I could benefit from hearing aids. They were advised to send me to a public school and not a Deaf school.

I was mainstreamed in public schools on Long Island. I received speech therapy both at school and privately. In school I used an FM System where I had the receiver and the teacher had the microphone. I have to admit it made me popular for a while since every time the teacher would leave the room and forget to turn off the microphone, I would get a crowd of students around my desk listening to my ear piece to find out what the teacher was saying out in the hallway. Not a bad way to make a few friends.

In High School I refused to wear the FM system since it brought attention to me and this is a time where teenagers just want to blend in. I had a notetaker in some classes but I winged it for the most part and lipread my way through high school. Not easy but I got great grades and made it.

I have to admit high school was a very socially isolating time for me. This is the time in our lives when we hang out in groups and socialize at major school events. For a Deaf teenager, it’s a never-ending struggle trying to keep up with who is talking and what the topic is. This continues for the rest of our lives but it really has an impact in high school. While I was involved academically at school, socially I was completely excluded. Tough time but I learned so much about myself and human nature. Even with everything I learned being absolutely invaluable, I wouldn’t repeat high school again if you paid me.

For college I went to Fredericksburg, Virginia. Talk about culture shock. Not only did everyone speak slower down there, they also had an accent I had to get used to that caused me to be even more confused than I was up in NY with all us fast “tawkin New Yawkahs” College was a little better than High School since cliques aren’t as apparent and it’s all new people with more open minds.

DEAF CULTURE AND CAMP ISOLA BELLA
Let me just take a moment to thank my aunt and godmother for recommending that my mother send me to a Deaf camp and get some exposure to the Deaf world. Also thanks to Mom for being open to that suggestion and agreeing with her! It was at Camp Isola Bella that I finally met and interacted with other Deaf and hard of hearing kids my age. I learned how to sign there and really came to appreciate just how diverse the Deaf community is. I felt like I found a place where I fit in and everyone is able to be themselves without worrying about communication barriers. The great thing about this camp is that it is an island in the middle of a lake. Talk about my heaven on earth.

After leaving the camp I went back in 2000 as a staff member to give back to the camp and to pass on the same wonderful experience I had to other children. I’m still a very proud member of the staff and hope to continue for as long as I can. To find out more about Camp Isola Bella go to www.asd-1817.org and click on summer programs.

(Many thanks to the staff from 1988 to 1993 for helping me realize who I was and of course for being patient and teaching me about Deaf culture and American Sign Language. It was only 2 weeks of the summer but the memories and the impact you had on me lasted for a lifetime.)

WHY I GOT THE IMPLANT
When I graduated college I realized that I wanted to be able to make my life a little easier when it came to interacting with the hearing world and my family. I had a degree in American Studies with the intention of going to law school but I realized I really wanted to teach. At this point my hearing was dropping every 5 years and each time I got used to the new level of hearing, it would drop more and I would become increasingly frustrated. I was fine with losing all my hearing but I wanted to see if the implant would help or not. I went with the mindset that it was going to be hard but I was willing to go through the training and be patient with the experience. The most important thing I had to keep in mind was that there was a possibility that it wouldn’t work at all. I told myself as long as I tried, I was prepared for anything. After all, I had nothing to lose so why not?

IMPLANT TESTING EXPERIENCE
Before anyone gets a cochlear implant they must be tested to see if they are a candidate. You go through cat scans, balance tests, audio tests and they also go through your “hearing” history.

I had an unusual experience going through trying to figure out if I should get the implant and where. One doctor thought I wasn’t a candidate because I spoke so well. Needless to say he was surprised with the results of my audiogram and changed his mind. Another hospital was so eager to get me implanted that they didn’t test me thoroughly and went ahead to set up the surgery before finishing the tests. Needless to say I didn’t go with either one. The hospital that I finally went ahead with was the most realistic. The Dr was very blunt with me and told me all the negative aspects of the surgery and the recovery. I went through 2 weeks of testing and probing. The best part was they left it up to me. Told me all the risks as well as the potential rewards and all the things I would have to go through. They sent me home and told me to think about it. If I wanted the surgery I should call them and set it up. Needless to say I went ahead with them because they didn’t assume anything nor did they pressure me into doing anything.

AFTER THE IMPLANT
Boy you think you can hear and then you get this implant and realize just how Deaf you really are. By this I mean deaf as far as hearing and also culturally. I heard things I never heard before after I got the implant. Mind you it took a LONG time to learn “how” to hear and how to interpret the sounds everywhere. Essentially, my ears were born the day I got hooked up with the external part of the CI. To help me along, my mother would read to me and I would repeat back to her what I heard. I used environmental CDs to learn what certain sounds were. I never heard high frequency sounds before so that was a major learning experience. Lettuce ripping, soda bubbling, cicadas and other bugs buzzing, leaves rustling, rain, pencils scraping, people shifting, lawnmowers, car engines, car alarms, doors creaking, fabrics and paper rustling.....boy we live in a noisy world. These were all things I didn’t hear before. No wonder I take my implant off when I get home. :o) On the other hand there are many things I really do enjoy hearing. I love being able to follow the lyrics in songs and hear children attempting to speak. Hearing my family on the phone is a wonderful feeling. Lately I’ve been picking up accents easier and appreciating the diversity of NY accents. I never get tired of the NY-Italian accents and actually being able to hear my own!

AM I STILL DEAF?
Not only am I hearing things for the first time, I’m also appreciating and realizing just how Deaf I really am. It was only after the implant that I really immersed myself in the Deaf community and realized who I was, implant or not. It really hit home that no matter how powerful a hearing aid or what kind of listening device I am using, INSIDE and in my heart I am Deaf. It’s who I am and no technology will change that. The way I grew up and how I am still adapting to the hearing world just goes to show me that on a daily basis.

DEAF OR HEARING FRIENDS?
I’m most comfortable when I’m with a group of people who sign, and this is with Deaf and hearing alike. Many people ask me who I prefer to hang out with. I don’t have a preference. The important things is communication and being able to listen and support each other. It doesn’t matter if they are Deaf or hearing.

REACTIONS TO THE IMPLANT
My family thought the implant would help me get along in the world a little easier. It does and doesn’t. Yes, I can hear better than I did before I got implanted but it’s still difficult to adapt to group situations where everyone is talking. Some people really thought that the implant would make me “hearing” and it doesn’t. Technically I’m functioning more as a hard of hearing person now than someone who was almost completely deaf. For some people that is not much of an improvement since they still have to look at me when I speak and occasionally repeat things. It’s a shame but it’s how they react.

As for my Deaf friends and the Deaf community in general, it really didn’t impact them or change their opinion of me. I find that many people don’t know I have the implant and I never once made a point of telling anyone that I have it. It doesn’t define who I am. It’s simply something that helps me to hear better in certain situations and allows me to interact more easily in the hearing world. I can honestly say there are still some Deaf friends of mine who have no idea I have the implant. The reaction I usually get from people when they find out is surprise and then they realize that the implant doesn’t define who I am nor does it change who I am now that they know. I don’t advertise that I have the implant but at the same time I don’t hide it.

ADVOCATING THE USE OF THE IMPLANT
Don’t ask me to advocate the use of or encourage someone to use the implant. It’s an incredibly personal decision to go ahead and get a cochlear implant. I would never tell someone to get it or not get it. I will however share my experiences, both positive and negative and let someone make up their mind. If they decide to go ahead with it I’m more than happy to help that person along. If they decide not to, that is also fine with me and doesn’t change anything about that person. Once someone gets the implant it’s also their decision whether or not they choose to wear it in certain situations. I don’t put on my implant until I get to work and I take it off most nights to enjoy the quiet and go back to being “myself.” It’s how I unwind. Yet at the same time I know it’s important to make sure I wear it to keep up my listening skills. It’s a delicate balance but it’s my decision how I decide to keep that balance.
1. Do you feel more comfortable using sign language or speaking?
That depends on the situation. In a lot of situations I feel more comfortable signing than speaking, especially when it comes to emotions and expressing myself.
2. Do you think that all the sounds you hear now were like you imagined?
Definitely not :o) Most Deaf people have what is called an auditory imagination. This means we imagine what things will sound like and it also means that when things move within our line of sight, there is an “imaginary sound” that goes with the visual. It’s hard to explain but it’s almost like every movement creates a sound and we make up a sound for it. After the implant I really had to learn to let go of my auditory imagination for a lot of things and learn what they really do sound like and if there is a sound with it.
3. Do the deaf population still consider you deaf or hearing?
Ask them :o) But the majority of my friends and Deaf individuals that I know consider me Deaf based on WHO I am, not what I have.
4. Is there a whole different population of cochlear implanted?
I’m not quite sure what you mean by this so I will answer as best as I can. There is a large population of individuals with cochlear implants. I believe they are struggling to figure out where they belong. As for me, I consider myself Deaf. To others I am hard of hearing. The cochlear implant does not identify who I am, it simply allows me to hear better than I would if I still had my hearing aids. It also allows me to interact in the Deaf community and the hearing world.
5. Do you recommend cochlear implants to everyone?
Absolutely not. The decision to get a cochlear implant is incredibly personal. I will discuss my experience with the cochlear implant with anyone. However, I will not encourage or discourage anyone from getting it for themselves or their children. It’s not an easy process to go through physically and emotionally. Not only that, the implant doesn’t work for everyone. Sometimes there are biological reasons and other times it’s because someone gives up or just doesn’t want to use it anymore. I know several people who gave up and some where the implant just failed.
6. Do people that have the implants-are they considered deaf or hearing from others?
That depends on the individuals. Many people think that the cochlear implant will make someone “hearing” or almost “hearing” Someone with an implant will never be “hearing” Depending on how well the implant works, they probably will be able to hear a lot but it will never be perfect nor is it a “cure” or perfect solution to hearing loss or deafness. It’s incredibly powerful and works better than hearing aids on many individuals but it’s not something that will change someone’s identity from Deaf to hearing.
7. Did you expect voices and sounds to sound like they do?
No, you can see the above answer about auditory imagination in question #2. It was almost like seeing a large, tall man and imagining his voice to be deep and gruff and once I got the implant I found out it was high and melodic :o).

8. Was the decision to get the implant easy?
No, I struggled with it for a long time and did a lot of research before I decided to take the risk. I waited years until I felt more comfortable with myself and the decision.

9. If your family was Deaf, do you think you would’ve gotten the implant?
Wow, I have no idea. One of the main reasons I got it was to make communication with my family and the hearing world easier. If I was raised in a Deaf family, my entire outlook and upbringing would’ve been completely different so I really can’t say what I would’ve done.

10. Would you implant your child?
Right now the answer is no. I would wait until they were old enough to understand what getting an implant means and what they will go through. Technology is changing so rapidly that I really don’t feel any rush to implant a child. Not only that, I really don’t think I could put a child through that kind of invasive surgery.

11. Are you glad you got the implant?
Yes, it works for me and I get many benefits from it. My only regret is that I lost some of my balance as a result of the surgery but other than that, I’m pleased with it.

12. How well do you really hear?
I’m not sure how to answer that :o) If you ask my audiologist, I can pick up conversations at a normal speaking level but I won’t be able to understand all of it. I pick up sounds but am not always aware of what they are. I can’t always understand people on the phone and tend to do best with people I’m familiar with.

13. Did you get speech therapy after the surgery?
No, there really weren’t any support services for me after the surgery. I just winged it and trained myself to hear with the help of my family and friends. I can go for speech therapy if I want to but I guess I never felt the need to.