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Confession of A Former Anti-CI for Deaf Babies

June 9th, 2008 by | Tags: , , , | 10 Comments »

When CI, new technology of hearing assistance for deaf people, was announced in the late of 1980’s and deaf babies/children were getting CI surgery, most ASL-Deaf people including me were fiercely opposed CI for deaf babies/children since it was untested and I believed that there had to be another cycle of false hope or failure in deaf education.One of my main opposing reasons of CI for deaf babies/children was, “I am fine, why fix me?”  Not only that, I felt being offended for being no good college-educated ASL Deaf person in eyes of deaf of hearing (DOH) parents.  Indeed, I was hoping that the failure rate for CI on deaf babies/babies would always be high and that deaf schools would always be the best choice for deaf children. Based on my personal experience from schooling years, I have often seen oral deaf people, who later started to learn sign language, became immersed in Deaf Culture and lessened use of oral communication.  And I have never seen or know any ASL deaf adult who diminished their use of ASL after learning how to speak.  It is another opposing reason that I felt that CI for deaf babies or children is going to be another cycle of failure or false hope in education for deaf children.  

During the decade of 1990’s, I had frequently seen news from newspaper articles or TV that more deaf children were getting CI and I didn’t really follow it up since it had been becoming the norm.  I have seen many failures of Deaf children with CI.  What do I mean by failure?  They don’t use CI, dislike to use CI or aren’t able to grasp acoustic language. 

I have seen some latened deaf adults that have CI.  I also know few ASL Deaf adults who got CI.  They don’t bother me due to their choice.

In the late decade of 2000’s, I started to hear news that the technology of CI has drastically improved and more prelingual CI people are able to function like hearing people than ever and probably all of them are so grateful to have joy of sounds.  So I began to open my mind as I wanted to be educated about CI and then I surfed on the internet and found www.cochlearimplantonline.  As I was shocked to learn that Rachel, a former profoundly deaf baby and owner of this website, has an ability to function like hearing people, my instant thought was, “I could be like her if CI ERA occurred during my time I entered the world.”  Wow, my eyes automatically widened after discovering lot of positive side of some prelingual CI individuals and I realized that they have more and better choices than me as ASL Deaf person without spoken language.  It is no wonder that I am seeing the declining population of many deaf schools across the country.

I recently witnessed two school-aged pupils with CI at local schools and they associated with their peers very well without an interpreter and that they are able to function like hearing people.  Someone labeled this as “anonymous deaf.”  From Melissa’s comment, she mentioned that there are currently thousand prelingual CI students that function like hearing people.

Although I come from DOH (a vast majority of prelingual deaf people) family, I reared in two different worlds: ASL environment -I associated with loving ASL people from deaf schools, Gallaudet, and Deaf Culture- and my loving linguistic-bondless bloodline family.   

Revisiting my past especially to my early childhood, I have mixed feelings as there were some bad and good times.  Some negative parts of my memorable childhood are:  I cried so hard as I didn’t understand why my family left me alone at a strange place -deaf school- on my first day of the school year when I was six years old; I usually sorely said goodbye to my family when I had to go back to the deaf school from school break and I didn’t see them much during the schooling years; When I was back to deaf school, I was usually homesick for several days;  since I was the only deaf of my bloodline family and no one knew sign language, I consider myself as an ugly duckling;  While I was with my family, I often thought, “Why am I so different from my family?”  Even though I was happy to be with my family, I was often isolated linguistically and was ASL-sick during my school break especially on late of summer vacation; I was so jealous of my siblings for getting lot of attention from my parents/relatives and for having many local friends.  Non-signing hearing people would often asked me for any sign for obscenity.  And whenever they saw me, they would laugh by using obscene signs.   In reality, I lacked in-depth conversation while I was at home and was visiting relatives and neighbors.  I consider myself as a dog whenever I am around lot of non-signing hearing acquaintances such as family reunion.

During my early teenager years while I was at home with my bloodline family, I would often ride a bike to visit my DOH schoolmates who lived about four or five miles away from my home.  Later I had met some local DOH adults but they weren’t college-educated.  Since lot of my school friends came from metropolitan cities, I envied them since they were able to see some same-age schoolmates during vacation while I lived in a small city as I hardly had any same-age schoolmates that matched my intelligence or interest.  I used to have few hearing friends due to our common interest such as playing non-acoustic games -sports or board games- but when they became teenagers, they simply became snubs and didn’t pay attention to me linguistically. Even though some local DOH schoolmates or adults didn’t match my intelligence or interest, I still associated with them due to our common preferential language usage, ASL.  I considered themselves as my”better-than-nothing” friends than I would have with “non-signing” hearing people.

On my senior year of deaf school, there were few colleges that offered deaf programs.  Deaf teachers especially Gallaudet alumni encouraged me to go their alma mater and I took their advice.  I also went to few hearing colleges but it was truly tough for being only a deaf person in some classes and I dislike keeping my eyes on interpreting during the whole lecture.  Moreover, there were times that the interpreters were lost when the pace of communication was too fast for her to be on par with conversation. 

As I first enrolled Gallaudet as a student, I had a culture shock after seeing lot of brilliant peers especially Deaf students of Deaf parents (DOD) and I was amazed to see their wealth knowledge and confidence in social settings.  Few days later, a student asked me if I came from DOD.  I was shocked and then signed, “I wish.”   I visited some DOD friends at their hometowns and I was shocked to see that their young siblings were signing intelligently as their parents paid attention to them as I never had with my bloodline family.   

Even as a college-educated person with lack of spoken language, I have frequently seen that non-signing people are trying to exploit me financially or to make me as a scapegoat for creating unfavorable occurrences.  And I have frequently seen or heard that ASL Deaf people with lack of spoken language are victims of many different situations especially false reports, financial losses, and underemployment.  I personally saw some college-educated Deaf people who were victims of job discrimination, mistreatment or oppression at some employment even at deaf schools.

Now back to my present time as a father of my hearing children.  While driving or riding on a motor vehicle as my rear-seated children are getting my attention, I dislike looking at the rearview mirror or turning my back to listen their conversation.  My wife and I often say that we wish that we are able to use acoustic language so we don’t have to turn our head around listening our children’s conversation.   Moreover, it will be nice that I am able to hear my children’s conversation with their friends or acquaintances.

There are often times that I have to depend on interpreters or written notes for meetings, doctor visits, video relay and some necessities.  In matter of fact, I dislike to depend on interpreters as third party to communicate with first party and I distrust some interpreters (especially from video relay) who may misstate my intention.  Whenever I need to call someone, I have to be at home or at certain place to use video phone.  It would be nice if I could use a portable videophone at anywhere or anytime just like acoustic people especially prelingual CI people do with their cell phones.

Last of all negative sides of being ASL-DOH person, I always wished that I was hearing and I do wish that I have an ability to use acoustic language.  As matter of fact, there are times that I am frustrated for having a lack of spoken language since I have to make sure I get a quality of an interpreter or someone have to schedule an appointment for me due to availability of interpreters.  

The positive sides of my life as ASL-DOH person are: I felt normal whenever I was at Deaf school, Gallaudet University or at Deaf events by associating with ASL people; Gallaudet University was definitely my best home away home while I was a student due to ASL environment where I mingled with lot of intelligent Deaf (especially DOD) students. I visited many different Deaf people’s hometowns across my native state/country to learn about their background, culture and lifestyle.  While I was a student at Gallaudet, I learned lot by observing at or looking up to most DOD people.  ASL is a beautiful visual language and I enjoy watching some talented Deaf entertainers with their artistic and /or dramatic ASL.  DOD folks at Gallaudet University generally molded and shaped me from a naïve and passive person to a strong person mentally, politically, socially and spiritually.

Even though I cried after I was left all alone by my family on my first day of Deaf school, I cried so hard after I graduated since I realized that I would not see my long time schoolmates daily as I considered the school as my home.  I cherish my memory at deaf school even though there are times I regret or wish that the situation could have been better.

Now on the scale of my life as ASL-DOH adult with lack of spoken language, negative side easily outweigh the positive side so in matter of fact even being a college-educated person, my whole life without spoken language is truly hard and frustrating.  

According to my inability to see a beauty of sounds, I am a legal blind individual on a land of acoustic atmosphere where I have to use my walking cane aided by my wisdom and acoustic-sighted interpreters in order to survive and breathe in a real world.  I heavily rely on two different types of Braille as my lifesaver of the linguistic society.  I have a touching ability to use an intangible language –ASL- and a touching awareness of tangible language such as printed context.  Blind individuals use two types of glasses to see the acoustic language.  Two types are hearing aid and cochlear implant.

I sense that successful prelingual CIers have joy of sound as they love their journey into the world of fully functional senses where they have an odor of acoustic aroma, a sight of artistic sound, a taste of flavor able sound and a touch of breezing sound.

I am so awe to see how brilliant and strong young person Rachel is based on her blog especially her rebuttals as she must be molded and shaped by her home environment especially from her parents that I lack.

The bottom line for changing my view from anti-CI for deaf babies to newfound supporter of CI for deaf babies with understanding that parents must follow AVT program is that I am shocked to see lot (probably all) of prelingual CIers who are grateful to have a joy of sounds as they cannot imagine how to live without the sounds beside their bedtime and water activities -taking bath or swimming.   I have to gulp so hard to accept the fact that CI is miraculously working well for prelingual deaf babies.  It is undeniable that prelingual CIers with fluently spoken language have a wonderful bond with their own family that I lack beside my own children.  Implementing sign language for their children is parents’ discretion and almost all of them hardly have accessible to the sign language environment.  So since prelingual CIers are so happy that they are able to function like hearing people and they have more choices than ASL-Deaf people with lack of spoken language, there is not much thing I can say bad thing about CI for deaf babies with full support of parents in AVT program even it considers as an invasive surgery and they have ugly scars on their head.

Another interesting article of blog, http://attherimmm.blogspot.com/2008/05/at-last-some-good-news-about-cis.html, tells that CIers with fluent spoken language are more marketable than Deaf people with lack of spoken language.  I don’t find anything from this article that I disagree.

The famous quote, “Knowledge is power,” is true, however, for deaf people to survive in the real world, “Knowledge without spoken language is powerless” applies to the article of blog above. Hence, my life without acoustic language is powerless.

“Yesterday was our parents’ day, today is our day and tomorrow will be our children’s day.”  Do I want current and future generation of deaf babies to have better future than me as cultural Deaf individual without spoken language?  Absolutely Yes!!!

If I was a deaf baby- actually I was- and I had a choice, I would rather to have CI and then to be mastered with my spoken language so I could go to same school with my siblings and would have a wonderful relationship with my parents.  I would easily mingle with hearing people, make friends easily based on our common interests, have lot of choices on employment/colleges and become a viable voice of the community without depending on interpreters or pen/paper. Last of all, I could enjoy to use a cell phone at anytime and anywhere (beside water activities) easily!!!!! 

For parents of former or current deaf babies with CI as well as current prelingual CIers along with pro-CI for deaf babies, I amtruly sorry for my past deed for being so ignorance and selfish as an anti-CI for deaf babies.  Will you please accept my apology?  I ask you to agree with my propsal of a perfect punishment for my misdeed as I am more than willing to become an advocator for deaf babies to have CI with understanding that parents must follow AVT program.  I will feel so honor and be humble if you say yes without an doubt.  Thanks.

This article doesn’t reflect the opinion of all ASL people but I want to share about my personal experience and my perspective.  I also know some DOH people have similar experience as mine.  Despite of what I said above, I consider myself to be more blessing than vast majority of ASL Deaf people without spoken language because I have a college degree and a decent-paying job while they lack a college degree or are earning much less than mine.  I do contact with my siblings and parent via email or see them during my vacation.  For deaf children with or without sign language, I cannot say if CI will work well for them since I don’t know the exact success rate but the earlier age, the better chance of getting an acoustic language.  Even though as a transformed thinker like a unforeseen former anti-CI for deaf babies as well as newfound supporter of CI for deaf babies, I am struggling to accept the fact that I along with some high quality of ASL-DOH (without spoken language) people are now becoming outdated living model of Deaf individuals or in other better words, “Living of the Past” while CI Culture is becoming a new generation as a dominant way of life for prelingual deaf people.   

So for anyone especially ASL people including CODA, DOD, DOH, Friends or ex-Friends of Deaf Culture and interpreters, who agree with this report, let toast our drink to celebrate, cheer and enjoy our olden days for betterment of current and future generation of deaf babies as they are entering the world of CI ERA!!!!

10 Comments

Karen Mayes

June 9, 2008 at 6:29 am

Yes, I see the similar trend also. Last summer I picked my son up from an AGBell-sponsored camp and I immediately noticed that he was the only one who wore hearing aids while the rest of kids had CIs. What blew me is the easiness of speaking/listening they had… they functioned like hearing people. Wow. I know a few families in Rochester, NY who have CIed children (mostly hearing families) and they are doing good as well. I know one deaf family who has CI child and the child is doing fantastic in the mainstream also.

Better to give CI to the babies (from my understanding, ALL babies’s brains are at the most “sponge” time, from 0 to 3 years old.)

Anonymous

June 9, 2008 at 11:52 am

amazing, your story is so much like mine. I had the advantage of being born hearing with a progressive hearing loss, so had some speech and oral language input during the childhood years. I too wonder if I was a deaf baby today, if my parents would have implanted me — I think that they would. When I was a kid, the choices were deaf school or mainstream, and in the 60s, deaf kids in the mainstream did not get interpreters, nothing. BTW, I am curious — I know plenty of deaf adults who are getting implants now later in their life. Are you a candidate for a CI yourself?

James

June 9, 2008 at 1:32 pm

who is this open minded deaf observer, reading this letter is good, but does not really do any good if its written Anonymous, would be nice to know who this person is and be able to contact him or her.

James

Ann_C

June 9, 2008 at 1:46 pm

Open-Minded,

It takes a lot of courage to speak on a subject that many culturally Deaf ASL users find controversial. CI’s and especially AVT threaten them and their way of life.

It must have been even harder to realize they will have an easier life than what yours has been. I think this is the part that many culturally Deaf ASL-users will find difficult to acknowledge– that the CI children actually get a lot of benefits from the technology and language methods they received and will have easier lives in the future than they did.

I’m oral deaf from the old school and I know I didn’t have it easy either, but instead of being envious of the CI youngsters, I’m grateful that advances have been made to make many deaf in the future lead better lives. Being deaf in the near future won’t be what one writer called a “deaf sentence”, that it won’t carry all the terrible baggage and labels it has had for so many years.

Karen Mayes

June 9, 2008 at 2:22 pm

Hmmm… I did go to CID in St. Louis (1960′s to 1970′s) and I do have good memories there. The teachers had been great (especially my speech teacher, despite the fact that my speech was awful… we kept in touch for many years.) I guess that might explain my welcoming attitude to the medical/technological advances, as well as my close relationship with my parents who don’t know sign language, even today.

Today I sent off the application form to the AGBell-sponsored summer camp for my son who expressed a desire to go there again this summer. I mean… I really do not have a grudge against AGBell… the way I see it, all organizations have something to contribute, make some people’s lives better and if not, they could always leave the organization to join other organizations. I communicated with ISD about my son’s dual enrollment (which is approved) and my daughter is enrolled at the day youth sport camp this week at ISD as well. It is good to have a nice balance in the deaf community… ASL, talking/listening, etc.

Yes, I am aware that things will be very different in the future, especially in my children’s time, because they carry the “deaf” gene and they have high chances of having a deaf child… so it would be interesting to observe them on how they make decisions with their deaf child/ren if they happened to have them.

Open-minded Deaf person

June 9, 2008 at 2:46 pm

I haven’t asked if I am a candidate for CI but if I was a baby, it would be undeniable that I would be a candidate. I hear very little only one ear. I did used to have a hearing aid and could discriminate few different sounds. Since I was always used to have a silent brain, I didn’t feel comfortable having my eyes to move after hearing unknown sounds when I wore a hearing aid. I regret to choose not to wear hearing aid and get used to the noise pollution.

Any prelingual ASL adult who got CI in their adulthood and grasped their spoken language are welcome to give input about their experience. If there are any, they must be brave enough to try them and I will applaud.

For commenters, many thanks for your positive comments about your experience.

June 9, 2008 at 7:16 pm

Your article is refreshingly honest, and I wonder how many others feel the same way as you but won’t admit it because of the Deaf Pride movement.

Despite having done well in my life with a profound hearing loss, I absolutely hate being deaf and if there were a pill tomorrow to cure it, I’d take it.

This doen’t mean I haven’t accepted it, or that I live my life wishing for something that is unattainable – I don’t. But if I had a choice, I would have perfect ears :)

Cheers
Robyn

Amy

June 9, 2008 at 9:57 pm

Open minded, I thought it would please you to hear what my 2 year old (born deaf, implanted at 6 months of age) said today at dinner. He looked right at us and gleefully shouted “SHUT UP!” Yes, indeed. Unfortunately my older son giggled and so we have potentially “created a monster!” Some of his favorite phrases are “Don’t touch it,” “don’t throw it,” and “I’m sorry.” All of these are made possible by the fact that his audition was developed rapidly– as soon as possible after birth. His language isn’t just repetitive, but said with understanding… my husband was asking him tonight if he was afraid of the little doggies, and he said “so scary!” He apparently knew that afraid and scary were similar concepts. Every day I learn new words which he has picked up unbeknownst to me… today, with his CIs off at a water park, I put on a lifejacket… he said “coat,” and then corrected himself and said “lifejacket!” I was surprised because he has been on a boat twice before and mentioned that word, but I didn’t know that he had learned it yet. Two of my boys have cochlear implants and they don’t just have a sensation of sound, they hear excellently. It is refreshing to hear of someone who not only believes this, but realizes that it’s a good thing for kids today. To move beyond the past and be happy for others is a great thing. Some people are stuck in the past and unable to see the future and welcome innovations and benefits for others! I think, also, people downplay the disadvantages of being a child who can’t hear, and somehow wish their own childhood on others… instead of being thrilled for kids who can now enter more fully into life with their peers and family.

Jeff V

June 12, 2008 at 11:01 am

Thanks for the wonderful article.

Arlene

January 22, 2011 at 4:10 pm

If I were a toddler, I know that I would have wanted the CI. I was the only one in my family, who had a severe–profound hearing loss. I lipread and I wore a body hearing aid. I used to wish that I could be like my sister and classmates at school. I would watch my Mother and sister listening to the radio and singing a song. I couldn’t hear the song and I envied them. By the time, I grew up, I accepted being difference. I think it is best for the deaf baby to get a CI and learn to speak naturally. I had many years of speech therapy. I know that my speech isn’t perfect but my hearing family and all my hearing friends understand me well.

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