1989 C.I.Toddler: Speaking For Myself
Receiving a cochlear implant in 1989 when I was two-and-a-half years old and when it was not yet approved by the FDA was the greatest miracle in my life and my family’s. My cochlear implant brought me outside of a box. Before I received my cochlear implant, I was inside a box. I couldn’t communicate effectively with anyone. All of that frustration diminished once my implant was turned on. Within six months from the day I heard for the first time, I made tremendous progress, beginning to speak and understand what people were saying. I went on to mainstream schools so that I could learn how to communicate effectively with normal hearing people.
During my young childhood years, I went to Auditory-Verbal therapy to learn to hear and to speak. I always had to leave school a half hour early to attend sessions once a week. This never bothered me as my parents taught me that attending therapy sessions was going to pay off in the future, and it did as my language is now caught up. Sometimes when I tell people that I am deaf, they are astounded and refuse to believe me.
Believe or not, I had to fight with my parents to get a second implant because they were against it for a few years. This proves that my parents raised a product of their expectations, an independent thinker. I finally received an implant for my other ear three years ago, and I am now happily hearing bilaterally as everything sound richer and fuller!
I attended mainstream schools all throughout my life where I had many normal hearing friends from many diverse cultures, including Indians and Chinese. I received many honors including “Most Outstanding Foreign Language Student,” which is given to only one junior or senior out of about 800 students, and the “Faculty Cup” which is given to only one graduating senior in recognition of his/her academic and leadership skills.
I’m bilingual in English and French. I studied French during all four years of high school and traveled to France four times in the last four years. During all four of my trips to France, I stayed with French families where I was able to be immersed in the French culture and communicate in French. During these expeditions, I always have many tearful moments because if this extraordinary technology were nonexistent, I would not have been opened up to other cultures. At the dinner table with my host families in France, we had many giggling conversations in fluent French. Hearing the loud roars and music in Paris every time the French won the World Cup amused me. In fact, when I got lost in middle of a little French town, I had the confidence to ask a police officer for directions in French!
I am now currently a second-year student in college studying photography with the intention to become a photojournalist one day. I’m very actively involved with my school newspaper where I not only do a lot of writing and photography, but also I attend several meetings that require effective communication skills. Thanks to my cochlear implants, I am able to fully participate in meeting discussions as I am able to speak up vocally anytime and hear other people around me.
Besides my success in school and in French, I have Norah Jones, American Idol, and Mandy Moore playing in my ears from my iPod all the time. My iPod is filled with scratches, wears and tears as I carry it with addiction everywhere I go. I also speak on my cell phone all the time with ease. In fact, I speak to my French friends on my cell phone in French too!
If someone asked me if I could choose one thing to change about myself, I would say that I have absolutely no regrets because I am happy and accept who I am. However, I can’t say of myself “I’m proud to be deaf. “Rather than saying that,” I say that I accept and take ADVANTAGE of being deaf because it makes me feel more special and stand out from the crowd.
Basically, I can’t imagine a life without my cochlear implants. I would be missing out using my iPod and hearing music, talking on my cell phone, speaking French fluently, and conversing with my friends from all parts of the world.
In response to questions:
I hardly experienced any frustrations understanding my teachers because not only can I hear well, but also I use a Lightspeed portable soundfield system in some of my courses, particularly the lecture courses. A soundfield system is a microphone and a speaker set. The speaker sits on my desk while the teacher is wearing the headset microphone, and the students pass a handheld microphone around the classroom. I could get by without the assistive listening device in all courses, but sometimes when teachers walk to the opposite end of the classroom, I will occasionally have a harder time understanding. Usually the only time I experience frustrations understanding teachers is if they have thick accents due to being from another country, but within few weeks, I usually get used to their accents and understand them better . Even normal hearing people can struggle to understand different accents. I’ve also used a CART reporter few times. I used it when my cochlear implant failed in my first year and second year of high school, and I was completely deaf for about two weeks, and then for about six weeks while I was going through an adjustment period of learning new and different sounds with the newer technology. Then, I used it again for one class, Art History, last semester as the professor was speaking too fast, and I couldn’t keep up with his information.
I never find classrooms to be noisy because, whether I’m hearing impaired or not, teachers always ensure that the classrooms are quiet, and this policy is enforced in most schools so that EVERY student can learn and understand what the teachers are teaching.
Social isolation was never an issue in high school as I was able to communicate well with my peers and was also very involved in extracurricular activities. I am one of those people who can easily fool other people into thinking that I am a normal hearing person. Sometimes when I tell people that I am deaf, they are astounded and refuse to believe me. Then, as soon as they learn that I’m deaf, they become very fascinated and ask me questions about my deafness. Many have seen me as an inspiration and a role model for overcoming obstacles. One of my friends in high school wrote a story for her English class assignment based on me. In addition, they were very supportive by asking me if I needed any class notes or telling me to call them if I had any questions. There were certainly a few people who didn’t accept me, but they were obviously complete idiots to many other people too, and, thus, I didn’t take their behavior personally.
In middle school, I won election to student council by a landslide. There were seven other students running for the same position as I was. Then, in high school I was elected to be President of French Club twice during my last two years of high school and also secretary of Film Club one year, and then Vice-President another year. My life was very busy in high school as I was always hanging out with friends after school and doing activities with them.
My college life now is also very busy as I’m very involved with my school’s newspaper where I bond incredibly well with other staff members. I’m usually one of the biggest chatterboxes in the group and the one who gets the discussions going. Staff members call me often on my cell phone for story ideas. Not only does my social life revolve around the newspaper, but I also socialize outside of school often by hanging out in the food court, attending movies, going out to dinners and lunches, malls, and hanging out in friends’ dorms.
I think what allowed me to have a successful social life was that I knew how to stick with a crowd of people who were not only mature, but also who were very accepting of people with disabilities and any kind of disorders AND had similar interests. As soon as I identified people who were not my type of crowd and were going to be nasty to me not only because of my disability, but also because of their personality and immaturity, I stayed away from them and didn’t allow them to hurt me. Whether people are hearing impaired or not, ANYONE can run into social issues for various reasons. Plus, I also live with a good attitude. I see that being deaf allowed me to be unique and stand out from the crowd.
I really do function like a hearing person except for when I shower, sleep, swim, and use very minimal accommodations such as using an assistive listening device and using a CART reporter on occasion. Also, people may ask me what my social life is like when I go to pools and to the beach. I have very minimal problems as I’m a very good lip reader and understand what people are saying most of the time.
While I function in my life as a hearing person, I also have a group of deaf friends with cochlear implants who were also raised with the Auditory-Verbal or oral approach whom I met over the years at cochlear implant conventions. We share our fortunate paths of being raised with this wonderful technology, the cochlear implant, by telling each other of our achievements that could not have happened without our cochlear implants and also share some small obstacles that we’ve had, such as not understanding people who mumble. At the conventions, we hung out in our hotel rooms or in the lobby and TALKED to each other until past midnight!
Receiving a cochlear implant in 1989 when I was two-and-a-half years old and when it was not yet approved by the FDA was the greatest miracle in my life and my family’s. My cochlear implant brought me outside of a box. Before I received my cochlear implant, I was inside a box. I couldn’t communicate effectively with anyone. All of that frustration diminished once my implant was turned on. Within six months from the day I heard for the first time, I made tremendous progress, beginning to speak and understand what people were saying. I went on to mainstream schools so that I could learn how to communicate effectively with normal hearing people.
During my young childhood years, I went to Auditory-Verbal therapy to learn to hear and to speak. I always had to leave school a half hour early to attend sessions once a week. This never bothered me as my parents taught me that attending therapy sessions was going to pay off in the future, and it did as my language is now caught up. Sometimes when I tell people that I am deaf, they are astounded and refuse to believe me.
Believe or not, I had to fight with my parents to get a second implant because they were against it for a few years. This proves that my parents raised a product of their expectations, an independent thinker. I finally received an implant for my other ear three years ago, and I am now happily hearing bilaterally as everything sound richer and fuller!
I attended mainstream schools all throughout my life where I had many normal hearing friends from many diverse cultures, including Indians and Chinese. I received many honors including “Most Outstanding Foreign Language Student,” which is given to only one junior or senior out of about 800 students, and the “Faculty Cup” which is given to only one graduating senior in recognition of his/her academic and leadership skills.
I’m bilingual in English and French. I studied French during all four years of high school and traveled to France four times in the last four years. During all four of my trips to France, I stayed with French families where I was able to be immersed in the French culture and communicate in French. During these expeditions, I always have many tearful moments because if this extraordinary technology were nonexistent, I would not have been opened up to other cultures. At the dinner table with my host families in France, we had many giggling conversations in fluent French. Hearing the loud roars and music in Paris every time the French won the World Cup amused me. In fact, when I got lost in middle of a little French town, I had the confidence to ask a police officer for directions in French!
I am now currently a second-year student in college studying photography with the intention to become a photojournalist one day. I’m very actively involved with my school newspaper where I not only do a lot of writing and photography, but also I attend several meetings that require effective communication skills. Thanks to my cochlear implants, I am able to fully participate in meeting discussions as I am able to speak up vocally anytime and hear other people around me.
Besides my success in school and in French, I have Norah Jones, American Idol, and Mandy Moore playing in my ears from my iPod all the time. My iPod is filled with scratches, wears and tears as I carry it with addiction everywhere I go. I also speak on my cell phone all the time with ease. In fact, I speak to my French friends on my cell phone in French too!
If someone asked me if I could choose one thing to change about myself, I would say that I have absolutely no regrets because I am happy and accept who I am. However, I can’t say of myself “I’m proud to be deaf. “Rather than saying that,” I say that I accept and take ADVANTAGE of being deaf because it makes me feel more special and stand out from the crowd.
Basically, I can’t imagine a life without my cochlear implants. I would be missing out using my iPod and hearing music, talking on my cell phone, speaking French fluently, and conversing with my friends from all parts of the world.
In response to questions:
I hardly experienced any frustrations understanding my teachers because not only can I hear well, but also I use a Lightspeed portable soundfield system in some of my courses, particularly the lecture courses. A soundfield system is a microphone and a speaker set. The speaker sits on my desk while the teacher is wearing the headset microphone, and the students pass a handheld microphone around the classroom. I could get by without the assistive listening device in all courses, but sometimes when teachers walk to the opposite end of the classroom, I will occasionally have a harder time understanding. Usually the only time I experience frustrations understanding teachers is if they have thick accents due to being from another country, but within few weeks, I usually get used to their accents and understand them better . Even normal hearing people can struggle to understand different accents. I’ve also used a CART reporter few times. I used it when my cochlear implant failed in my first year and second year of high school, and I was completely deaf for about two weeks, and then for about six weeks while I was going through an adjustment period of learning new and different sounds with the newer technology. Then, I used it again for one class, Art History, last semester as the professor was speaking too fast, and I couldn’t keep up with his information.
I never find classrooms to be noisy because, whether I’m hearing impaired or not, teachers always ensure that the classrooms are quiet, and this policy is enforced in most schools so that EVERY student can learn and understand what the teachers are teaching.
Social isolation was never an issue in high school as I was able to communicate well with my peers and was also very involved in extracurricular activities. I am one of those people who can easily fool other people into thinking that I am a normal hearing person. Sometimes when I tell people that I am deaf, they are astounded and refuse to believe me. Then, as soon as they learn that I’m deaf, they become very fascinated and ask me questions about my deafness. Many have seen me as an inspiration and a role model for overcoming obstacles. One of my friends in high school wrote a story for her English class assignment based on me. In addition, they were very supportive by asking me if I needed any class notes or telling me to call them if I had any questions. There were certainly a few people who didn’t accept me, but they were obviously complete idiots to many other people too, and, thus, I didn’t take their behavior personally.
In middle school, I won election to student council by a landslide. There were seven other students running for the same position as I was. Then, in high school I was elected to be President of French Club twice during my last two years of high school and also secretary of Film Club one year, and then Vice-President another year. My life was very busy in high school as I was always hanging out with friends after school and doing activities with them.
My college life now is also very busy as I’m very involved with my school’s newspaper where I bond incredibly well with other staff members. I’m usually one of the biggest chatterboxes in the group and the one who gets the discussions going. Staff members call me often on my cell phone for story ideas. Not only does my social life revolve around the newspaper, but I also socialize outside of school often by hanging out in the food court, attending movies, going out to dinners and lunches, malls, and hanging out in friends’ dorms.
I think what allowed me to have a successful social life was that I knew how to stick with a crowd of people who were not only mature, but also who were very accepting of people with disabilities and any kind of disorders AND had similar interests. As soon as I identified people who were not my type of crowd and were going to be nasty to me not only because of my disability, but also because of their personality and immaturity, I stayed away from them and didn’t allow them to hurt me. Whether people are hearing impaired or not, ANYONE can run into social issues for various reasons. Plus, I also live with a good attitude. I see that being deaf allowed me to be unique and stand out from the crowd.
I really do function like a hearing person except for when I shower, sleep, swim, and use very minimal accommodations such as using an assistive listening device and using a CART reporter on occasion. Also, people may ask me what my social life is like when I go to pools and to the beach. I have very minimal problems as I’m a very good lip reader and understand what people are saying most of the time.
While I function in my life as a hearing person, I also have a group of deaf friends with cochlear implants who were also raised with the Auditory-Verbal or oral approach whom I met over the years at cochlear implant conventions. We share our fortunate paths of being raised with this wonderful technology, the cochlear implant, by telling each other of our achievements that could not have happened without our cochlear implants and also share some small obstacles that we’ve had, such as not understanding people who mumble. At the conventions, we hung out in our hotel rooms or in the lobby and TALKED to each other until past midnight!
January 16th, 2008 at 12:10 pm
I am glad that you are thriving in your life and that you are the person first…
Bless you.
January 16th, 2008 at 12:27 pm
Whoever you are (an author). You have to realize that your so-called personal success DO NOT apply to everybody.
You are just an expectational person. GOOD for you! Why can’t you be more like Barack Obama? The Democratic presidential candidate NEVER patronize the African American community why and how come they could be like Obama.
Obama was very forunate to grew up in the bi-racial household and other countries. Not all the African Anmerican community have such opporunties what Obama had.
Please do not upsurge your assumption and ideals that would work very well for other deaf individuals.
What about our unique aspects of cultural and linguistic within our deaf communities? The use of sign language definitely benefit the society at large like underwater communication and other visual means.
That make our human diversity so special without homogenezing human beings to fit in the one size (societial expectation for normal society).
Wish you all the best luck for enjoying the life.
Robert L. Mason (RLM)
January 16th, 2008 at 12:34 pm
You and your family have been an inspiration for me as I am raising my daughter. My Rachel has had her implant since 1999, and I know that her achievements would not have been possible if you and others like you had not paved the way.
God bless you on your journey.
January 16th, 2008 at 12:38 pm
“Before I received my cochlear implant, I was inside a box. I couldn’t communicate effectively with anyone.”
That statement, and more similar to it in your narrative, is certain to raise the hackles of many Deaf people.
They will say it leads to an assumption that only the CI will “open the box”. The rest of your narrative makes clear that you credit most of your accomplishments to having the CI.
This is not being fair to yourself, since you probably would have accomplished these remarkable things no matter if you were raised in the signing Deaf community or with the CI.
I encourage you to temper your statements with this in mind. It will help to bring us all together better.
January 16th, 2008 at 12:48 pm
Diane is right, Rachel. From a very young age, you were already accomplishing a lot prior to your c.i. I suspect even though you may not have gotten a c.i., your accomplishments would be impressive as it seems to be in your personality
There are many successful ASL-using Deaf people too. They achieve post graduate degrees, travel extensively, and have productive jobs, including owning businesses.
I am glad you have done extremely well. The heavy involvement of your parents workng with you and your sister is the key. Thank you for sharing your story with us.
January 16th, 2008 at 1:26 pm
That took gumption, kudos to you.
I decided not to get a CI myself although I was a candidate back in 1977. Looking back, I’m glad I did not since it was pretty crude back then. I was again given the opportunity about five years ago – all paid for by the insurance company.
After mulling over it, I decided not to again. One cannot teach an old dog new tricks. That old dog has had a rich life, been everywhere, and has many wonderful friends.
Again, thank you very much for writing about it, and it’s fantastic to hear you’ve done well.
January 16th, 2008 at 1:34 pm
As a parent of a very young Deaf child with a CI, I have to say that I’m so incredibly happy to read these stories ‘from the mouths of babes.’
Dianrez’s amazing tales of what’s she’s done (I’m in tears with every episode on her blog, although perhaps she wouldn’t be too happy at being called a ‘babe’) as well as Rachel’s beautiful story are inspiring and empowering. I think that success stories and visible role models like these two women from *every* part of the d/Deaf community spectrum are what we need for our young deaf children and their families to know what’s possible and to embrace their deafness as part of what makes them unique and wonderful.
Someday I hope we build a forum where these language differences (ASL, BSL, SEE, Cue, Oral, etc.) or approach to technology aids (CI, HA, Baha, hybrid, no-tech) are all recognized as valid and acceptable options by the Deaf community. What an amazingly powerful coalition that could be if those who are deaf stand together!
Yeah, I know, that sounds pretty naive, and of course there are reasons for people to be bitter and angry about the past, but a whole lot of groups of people have had to speak out about and then get beyond injustices and work side by side with those they had previously been oppressed by. Show these kids the good that can come of being deaf: let them see strong powerful deaf role models, ambassadors for Deafhood rather than bitter, angry people who want to ghetto-ize a very exclusive group of ‘pure’ Deaf people. We should teach them deaf history, but you can’t dip their toes in the same river you swam — that water is long gone past. But I’ll stop now before I move onto how NAD could bring food to the hungry and peace to all the world (I wish!).
Right, so I probably should have just said: great example MZ – please keep them coming from CI AND HA AND no-tech-aids AND ASL AND ORAL, etc. so we can see how each has its possibilities for success…
~ Beth
January 16th, 2008 at 2:07 pm
I am not one of angry and bitter deaf person, who want to “ghetto-ize” the deaf community from being part of the society at large.
Let’s be honest with several examples of linguistic ########## minority community.
Before the educational intergration of African Americans to the white-lily schools, many African Americans dressed very well and knew themselves pretty well.
The African American community got dysfunctional like high numbers of drug abuses and STDs. Too many African Americans ended up in prisons.
The African American community fell apart like the highest number of absentee fathers within the African American family.
Too many African Americans felt inferior to the whites while attended the majority of white students. They lost their own identity as African American.
For worst and better of the societial intergration of ethnic ########## groups being thrusted into the sea of uncertainity and unnavigation.
Too many deaf individuals from mainstream schools, tend to have severe emotional problems than any deaf individuals attend the school of the deaf.
Anyone who know hir own cultural and linguistic identity usually are well-rounded individuals than any individuals being artificially modified for idealistic reason.
Look forward to the studies of long-term consquences of CI users, especially emotional and congential development.
Let’s imagine that one of the country or terrorist group use the electronic magentic pulses (EMP) weapons to attack the civilian population.
The CI users will be mostly vulnerable to the EMP attacks as compared to deaf individuals without CI devices inside themselves. Or the CI users walk accidently past the huge microwaved area, ex. corporate research or military base. Their heads surely will explode or fried.
Culturally deaf people will apply their savvy/natural instincts to respond to any arising situation much better than indivduals with CI. Real freedom from the technopoly or enslave by the artifical intelligence/technology.
RLM
January 16th, 2008 at 2:08 pm
I am really puzzled that my writing being filtered out by just using words like
r a c i a l
Oh boy!
RLM
January 16th, 2008 at 2:47 pm
For days we’ve been hearing from Deaf people against implanting babies that they didn’t trust the parents of those children to speak for their happiness. Deaf people have been hurt by AGBell so badly and wanted to hear from and ADULT who was implanted as a child. Only THAT would convince them someone with a CI who was given AVT could have a happy childhood and become a successful adult in the hearing world.
I read her blog yesterday. Now I’ve read her statement in here. It does seem like she had a happy childhood where she thrived in mainstream schools.
Of course it will take more than ONE happy adult to convince all of you.
There is not doubt she could have thrived just as well had she learned ASL. She’s obviously a very bright young woman! But that wasn’t the original question on your minds was it?
Would she have had as many opportunities in today’s world as a non-oral Deaf woman compared to an oral deaf woman? She can still learn ASL!
I’ve noticed someone else has now blogged that perhaps people with CI’s should be removed from disabled status, since they all seem to hear so well. SHEESH! They DON’T ALL seem to hear so well. Many late-deafened people struggle with their hearing.
January 16th, 2008 at 3:26 pm
Rachel,
Thank you for sharing your story, you are giving your experience to the DEAF community to do with it what they will. You did, however, neglect to add that you are an active contributor to the Pediatric Cochlear Implant Circle Cochlear Implant Awareness Campaign as our NUMBER 1 Designer. To see Rachel’s designs go to cafepress.com and key in cochlear implants. She is a phenomenal person and talent…so inspiring and passionate. She is an important voice, help it grow…Jodi
January 16th, 2008 at 3:33 pm
I don’t believe in all of CI children will be successful in speaking fluently and writing fluently.
I once saw a CI adult who walked in, and she met a woman who was behind the table and signed a document. She wore her dirty clothes and she was maybe unemployed. She needed to collect some free food. What has happened to her unsuccessful life in the real world?
My hard of hearing was equal to hearing at the high level of grade. I thought that my sister would be successful in what she wanted promotion career as with the options of lawyer, doctor and many listed. She could do anything in the future, even more than I would. .But as things turned out, I was recently graduated from college and have become a deaf architect. Unfortunately she has dropped out of NTID/RID in Rochester for the past years. I myself am thankful to have taken off the hearing aids. It is different in the real world.
January 16th, 2008 at 3:34 pm
My hard of hearing (sister) was equal…
January 16th, 2008 at 4:03 pm
I am glad that you can speak well and hear well with your c.i. I know some deaf people, who can speak well and hear well with their hearing aid or c.i. Most of them know ASL, and they learned to speak by themselves naturally because they have a lot of hearing. They are lucky, too. They can blend well with hearing people. They can even interpret for their deaf friends or their deaf classmates in the classes or in churches. I don’t have much hearing like yours but I can speak pretty well, and can lip read ok but not expert. I learned ASL when I was 10. Some hearing people can’t believe that I am deaf because I have a good, hearing voice. I got the best education through ASL. I know one deaf boy with c.i., who can’t speak well and can’t hear well. He has the ASL interpreters in his school. His mom let him to learn ASL becasue he has the deaf voice. Each deaf individual is different. Not all c.i. deaf people can speak well like you. I learned that only 4% of deaf people with CI depend on hearing high percent.
January 16th, 2008 at 4:17 pm
JMA, very good point. There are so many variables with deafness that each situation is unique. How well a person does with the implant depends a great deal on how developed the auditory center of their brain is. The better it is developed, the better the person does with the implant. Many people get the implant to assist with communication, even when they know they will only get limited benefit from the implant.
The doctors know a lot more now than they did 10 to 15 years ago about what each person can expect from the implant. There still is no direct way to know how well the auditory center of the brain has developed though, nor how much more it will develop after the implant. That is the big unknown factor.
January 16th, 2008 at 6:12 pm
” Let’s imagine that one of the country or terrorist group use the electronic magentic pulses (EMP) weapons to attack the civilian population.
The CI users will be mostly vulnerable to the EMP attacks as compared to deaf individuals without CI devices inside themselves. Or the CI users walk accidently past the huge microwaved area, ex. corporate research or military base. Their heads surely will explode or fried.
Culturally deaf people will apply their savvy/natural instincts to respond to any arising situation much better than indivduals with CI. Real freedom from the technopoly or enslave by the artifical intelligence/technology. ”
I have to say that I have read a lot of farfetched arguments against CIs before – They can’t kiss without getting shocked and damaging their implants (totally false), They can’t drive or ride in hybrid cars (also false), They can’t have life-saving cardiac defibrillation (also false. It don’t even damage the CI as the current only passes between the two paddles), etc. Of all of these, the possibility of a terrorist attack with EMP weapons is the most farfetched I have ever seen. Perhaps being able to hear emergency instructions in the event of a terrorist attack would be an advantage?
I am enjoying reading all the reasonable, well-thought out discussions from all points of view, and I think that they are much more effective when they are respectful, calm, and not out on a limb.
January 16th, 2008 at 6:13 pm
Correction – Cardiac defibrillation doesn’t damage CIs.
January 16th, 2008 at 6:14 pm
Re: “You did, however, neglect to add that you are an active contributor to the Pediatric Cochlear Implant Circle Cochlear Implant Awareness Campaign as our NUMBER 1 Designer. To see Rachel’s designs go to cafepress.com and key in cochlear implants. She is a phenomenal person and talent…so inspiring and passionate. She is an important voice, help it grow…Jodi”
I too wish there was a way for us to all understand this CI business better. It is hard to really know the truth when all we see is the “best of the best” explaining how CI’s are so wonderful.
Is factual data and research being collected? Will these children once again be another experiment? I have seen so much pain because of a system that cannot accept deaf people and their language and culture.
We chose to learn from our daughter now a young adult. She is proudly Deaf and ASL is her first language.
I am quite tired of one language being deemed superior to another. ASL and spoken English are separate but equal. There is a diverse range of successful and not successful people in each of these languages.
I do wish that hearing parents would have an opportunity to have first contacts with deaf professionals and mentors. And decisions would be based on language acquisition from the start without CI Companies and AVT programs making new parents pick oral only and scoffing the benefits of ASL for babies.
This is why the divide is so big. ASL supporters do not have the big money, the medical society, and large companies to support them. It is grassroots organizations and coalitions made up of passionate volunteers doing this work. Fighting to get hearing people to understand that they cherish their language and culture.
Until we can get the medical profession to understand that this debate is more than about the “ear” and “money”, we all sadly will be the victims of an out of control system. An “us” against “them”. Very sad indeed.
January 16th, 2008 at 6:35 pm
[...] was a reply to MiskaZena’s blog of January 16th, which was written in response to a post from Rachel. I have to say that I have read a lot of [...]
January 16th, 2008 at 6:59 pm
Congras on your successful and you only handful of successful C.I. (less than 5%) and the rest C.I. consumers only hear environmental sound or hear funny noise or even worst no sound at all (failed) So, lucky for you and happy for you. Am against C.I. on babies, but am support young adult (18 and older with their understand the risk of using C.I. God bless you.
Silentredwolf
January 16th, 2008 at 7:07 pm
Hearing Mom-
No professionals, AV or medical, made us choose a CI and Auditory-Verbal. In fact, we had the opposite experience, professionals who were very biased against oralism and who only told us about total communication options, who called A.G. Bell “a bunch of extremists,” etc. It is because we were not told of all of our options, let alone of any in an unbiased manner, that I first became an advocate many years ago. While I do advocate A-V if asked about a methodology, and that makes sense because that is what I am best equipped to talk about, the main thing that I have advocated for is unbiased, accurate information on all the various approaches presented to parents of newly diagnosed deaf babies. It is only if they hear accurate and positive stories from those espousing each approach that they will be able to make an educated decision as to what is best for their family.
I have to laugh when I read that it is a financial issue. If you knew the AV professionals that I do, you would not be saying that. They are certainly not getting rich off of their profession. They put in far more hours than 40 a week and get paid the equivalent of a school teacher. Auditory-Verbal International was unable to survive financially on its own and so rejoined A.G. Bell. Some hospitals have had to drop CI programs because insurance companies were reimbursing them at such a low level that it didn’t even cover the cost of the patient’s internal device and processor.
It’s involved and caring professionals, parents and CI users who are getting the word out and not those who are well financed. We have national and local chapters of organizations, as well as listservs, that we use as a means to share our experiences and information.
January 16th, 2008 at 7:10 pm
Silentredwolf -
It is not feasible for parents to wait to let an 18-year-old make the decision to get a CI because then the child will not benefit greatly from that implant. Research has shown conclusively that the earlier the better for development of hearing, processing and speech. After age 3, the brain begins losing its flexibility to comprehend spoken language, and the auditory nerve fibers begin to atrophy. If a baby today is implanted by a year old and receives appropriate follow-up therapy, he/she can learn spoken language naturally and with ease through hearing alone and then, at an older age, have the option of learning sign and joining the deaf culture or not. If you choose not to implant a child, then you are effectively taking that decision away from him/her.
January 16th, 2008 at 7:14 pm
Silentredwolf, not sure where you are getting your 5% statistic, but I don’t believe that is correct. It isn’t that clearcut either. The CI works far better than that for late-deafened adults, and for babies and toddlers. The group that would receive the least benefit would be teen to adults who never had hearing.
January 16th, 2008 at 7:15 pm
Here is an interesting article that should be read
http://ieet.org/index.php/IEET/more/1982/
January 16th, 2008 at 7:42 pm
Hee, that my guess, cuz most of my friends have c.i. and all of them said only hear environmental sound, some of them got when they were baby. Hummmm, C.I. is not life threat so why drill in head and install device. My hearing aid is just fine and lots of cheaper, oh by the way I can speak very well in hearing environmental. Went oral school, no sign language ( did not learn 3RS)till I move to Deaf school (residental school) Very successful, ASL, involved sports, Boy Scout (Eagle and member of Order of the Arrow Vigil Honor_rarely honor) So It doesn’t matter C.I., oral, ASL, Cue, Its depend on you with all your love, support and compfort. Oh by the way my 5 years old twins (hearing) learn sign language at 6 months old before they start talking with voice at 10 months. Now they talk like 7 years old. Pretty advance. Anyway, I respect you if you respect mine. we will be alright. Smile.
January 16th, 2008 at 8:01 pm
Melissa
Mother reading and signing to deaf children
http://www.youtube.com/watch?v=9D7jcHex_jQ
It is pleased to hear from the video.
January 17th, 2008 at 12:22 am
Melissa,
What people need to realize is that your experience of your daughter’s audiologist and teachers telling you not to implant is not the norm. It is typically the opposite. Hearing parents look for answers from their doctors and audiologists first. (In fact, when I found out my daughter was deaf, my first thought was “well fix it”.) Most hearing parent have never met a Deaf person in their life. Early Intervention is greatly lacking Deaf Mentorship to families.
Look at what is happening in Australia. Deaf babies are being implanted at record rates. The medical community and the CI companies are getting to families earlier and at critical influential stages during the grief process.
I am not saying that AVT programs and their teachers are getting rich. I am not saying that these teachers do not care for the children. What I am saying IS that AGBell has lots of money, hires good public relation consultants, and has many corporate sponsors from the CI industry and medical community. They will continue to support AGBell because this is how they make their own money.
I am not saying that I am against CI’s totally. For some people including your daughter, it obviously worked. She was also at the age to tell you that she wanted it. Babies do not have that opportunity.
Not only that but there are plenty of people that have been implanted and do not benefit. That data seems to be missing from everything we try to read. It is shuffled under the table. How can we really get an honest picture of what CI’s are all about?
Now..THIS is what I am against…. people who look down on ASL and will not even try to see it as equal to spoken English.
This is what I support….ASL for all deaf babies regardless of the choices that will be made later for amplification. ASL does not hinder speech and research has proven this over and over again. ASL provides the earliest possible acquisition of language.
AVT programs are forcing parents to choose “oral only” and “no sign”. (This is stated on AGBell’s website.) Not only that, this is the only way families that need scholarships for financial support can enroll. If a family wants to use ASL and AVT, then the family must come up with the money to pay for the AVT program….sorry no scholarship will be given. Well take a guess what parents will choose after they have just implanted their child? How has the “system” been set up? Looks like “oral” only to me?
So once again, where is ASL? Haven’t the last 100 years of oralism done enough damage? When are we going to bridge the gap and embrace technology while also embracing ASL and Deaf Culture and English?? When are we going to work together?
When are we really going to start listening to the people that know the most about being Deaf???
I wish your daughter the best.
January 17th, 2008 at 8:16 am
Hearing Mom,
One correction – Rachel was not old enough to ask for a CI. She was implanted initially at 2.7 years old, and my husband and I made the decision to implant her. It was her bilateral implant that she asked for when she was older.
While I realize that you and others believe that ASL will not hinder the development of spoken language, that is by no means a fact but, rather, a theory. The jury is still out on it, and there are those of us who believe the opposite, and there are studies to support our stance because the children will end up relying on the visual. Once the auditory part of the brain is fully developed, it’s another story for those who choose to then add sign.
Regardless of what the studies say, though, I could never have done both. A-V is not just a method or therapy technique. It’s a way of life that encompasses our lives and, by definition, does not include any visual form of communication. Thus, it is impossible to do A-V with sign. I spent so much time feeding in spoken language to Rachel. Had I had to divide that time not just in also teaching her sign but learning it myself, I never would have been able to work on her spoken English skills to the extent that I did.
When parents want their normal hearing children to learn a foreign language starting at a very young age, it is a well known educational fact that immersion programs are the best way to do it. Similarly, we immersed Rachel in spoken language, and she has done as well as she has because of the approach we took, not in spite of it.
The other issue here, though, is that what parents like me are also saying is that it is okay for deaf children with CIs not to learn sign. We are not harming our children, and they grow up fine and happy. Rachel is evidence of that. It is not a given that they need sign to be fulfilled or that they need the ASL community to feel a sense of belonging. It is a choice and not a must. That is the main point. The Deaf community is going after parents and professionals for not teaching our children ASL, saying that it is wrong, that they need it, that it is their natural language. It is time to recognize that things are changing for deaf children and they are changing very rapidly. Whether you want it to happen or not, it will not change. Many of these children are being implanted as babies and are not learning sign, will never feel a need for it, and will lead happy, productive lives where they feel a sense of belonging with their family and friends in the hearing world.
January 17th, 2008 at 10:37 am
Melissa describes the language conflict involved in choosing the A-V method very well.
We faced the same decision — and it’s a very tough one: we know that by taking a different, visual approach (teaching our daughter ASL as a primary language and immersing her in a daily ASL environment, teaching English as a second language), we are likely slowing her early acquisition of spoken language with her CI, because in effect, we spend only half the time an Oral family would normally spend immersing their child in one particular form of communication.
Before we found that she was profoundly deaf, we were planning to take a similar approach with English and Mandarin, so this approach is one that we thought through extensively.
Our hope is that by the age of 4 or 5 that discrepancy will balance out, she will never go without some means of communication, and she’ll have a strong foundation in both languages. We’re working very closely with language professionals who are coordinating in this process (Speech, ASL, and CI-specific speech professionals), and they are very optimistic, so I don’t mean to indicate that we are taking a risky and unproven experiment.
Before we found that she was profoundly deaf, we were planning to take a similar bilingual approach with English and Mandarin, so this approach is one that we thought through extensively.
But it’s much harder for us, and its harder for our daughter to take the ASL approach. Because frankly, the ASL world doesn’t provide the resources and well-organized and supported path to educating our daughter bilingually that the Oral or A-V methodologies provide. I think this might be why the pro-ASL community is having trouble reaching the parents of deaf children: because you aren’t reaching out with a formal and well-organized support framework. Oh, of course I know that it’s my responsibility as a parent to find the resources my daughter needs, but those resources are more easily come by and better organized on the A-V side. And getting a series of publications filled with the latest studies on language acquisition, case studies, and a network of professionals in your area from AG Bell vs a badly-photocopied leaflet about an ASL language class offered by the local community college (rarely taught by a native deaf signer) can make a big difference when you are trying to assess which methodology has the most credibility.
I think Mass. is unique in that we have a strong state- and medical community-supported push for ASL right out of the gate and *no* mention of CI unless initiated by the parent (sorry Melissa — I know that was actually not a positive for you
), but even with that advantage, we are now in a position of building Li-Li’s ASL + English early educational program piece by piece from scratch, which wouldn’t be the case if we had opted for the A-V method.
Honestly, if we weren’t living in this particular state and we weren’t head over heels in love with the program and Li-Li’s teachers at The Learning Center for the Deaf, I could see us opting for the A-V method over the bilingual approach because that program seems to be showing a whole lot more real support (scholarships, high quality information, a well-researched curriculum, trained professionals, lobbyists, alignment with schools, ACCEPTANCE, etc.) for deaf children than any ASL-based organizations I’ve seen.
Please don’t get me wrong, I’m firmly committed to ASL as our language methodology — I hope our daughter will be a strong, culturally attuned, native ASL signing and English writing/speaking, Deaf-identified woman who interacts across both the Deaf and hearing worlds and sees her Deafness as something that makes her unique, not ever as a limitation. But it’s very hard to see people arguing for the ASL approach versus the A-V or oral methods without putting their money where their hands are. (And I don’t mean money literally, I mean that we need to back up that argument for ASL with a whole range of educational and informational resources). Where’s our AG Bell counterpart? I want to sign up.
January 17th, 2008 at 12:14 pm
I think what many of us CI parents are looking for, is the same thing ASL people are looking for. Acceptance and respect for our choices, and support from each other. I know many Deaf people have had horrific experiences at the hands of oral educators in their childhoods. But many CI parents have been blasted by the ASL community for our choices. A lot of ASL Deaf don’t believe me when I tell them why we had our daughter implanted, choosing instead to believe negative reasons for our choices.
Building bridges goes both ways, and wrongs done in the past have to be acknowledged before they can heal. Again, this goes both ways. I am very encouraged by blogs like this that are trying to do just that.
January 17th, 2008 at 12:22 pm
Li-Li’s Mom (#29)
Thanks for your comment – I think the Deaf Community needs to hear that. I’ve personally often wished the same, and I think an organization is in the works to provide more professional information and support system. But that does require money, and well, a lot of us in the Deaf Community are poor, because of our weak education leading to barely self-sustaining jobs.
It would be great if the Deaf Community could band together with parents like you, so we’re able to build that professional support system. Hopefully the organization I’m hearing about, will take off and do what you and other parents are saying here.
So I guess we all should keep our eyes peeled for that…
January 17th, 2008 at 12:56 pm
Li-Li’s Mom,
It’s interesting to read what you say about Massachusetts because we lived in Boston until Rachel was 4, and her deafness was diagnosed at Mass. Eye and Ear. For us, the experience was exactly as you described,and The Learning Center was the only referral they gave us. I do think it is a shame that things still seem to be unchanged 20+ years later. As I’ve said before, I think that the professionals need to present parents with unbiased information on all of their options and, in addition, maintain a list of parents using the various options that they can refer them to for support. This is closer to what happens here in Atlanta because we do have a major oral school and A-V Center in addition to a signing school. However, even so, the main organization that provides support here provides more information about and is somewhat biased toward TC and ASL.
January 18th, 2008 at 7:09 pm
Melissa,
I am from Atlanta, and I work at a signing school as you mentioned. What main organization that provides support has more information that is somewhat biased toward TC and ASL?
What does this mean? Do you mean the program called Georgia PINES? Or Baby Can’t Wait? Or?
I am intrigued.
Amy Cohen Efron
February 7th, 2009 at 7:12 pm
[...] of deaf children That is what I teach all day long, every day to my special education 5th graders. Mishka Zena » Blog Archive Speaking For Myself Receiving a cochlear implant in 1989 Mail this [...]
February 7th, 2009 at 7:45 pm
[...] of deaf children That is what I teach all day long, every day to my special education 5th graders. Mishka Zena » Blog Archive Speaking For Myself Receiving a cochlear implant in 1989 Mail this [...]
April 2nd, 2009 at 12:17 am
I have known of deafened adults and profoundly Deaf (with just residual hearing) to have had failed CI. One in particular had become very depressed. Not only had the CI failed to do what was expected, he now of course has no hearing at all. The sounds he could hear were very tinny and “clangy.” They also caused him more irritation by the nature of the sounds until he thought he was going crazy, and he like others definitly regretted having it. In the end he just didn’t use it and stuck to BSL. It is a gamble, and a very individual decision. For those that it has worked for brilliant! But do spare a thought for the many that it hasn’t, and the state of mind they are left in.