I’ve been keeping a close eye on the criticism about me on other blogs, both in comments and in entries in the past few weeks. It’s very understandable why I would face criticism as I’m one of the very first successful CI users implanted as a toddler. When I was implanted in 1989, it was not yet approved by the FDA, and I was one of the first 200 children in the country. Thus, I’m one of the only pediatric CI pioneers on DeafRead for now.
Just because I hardly speak about ASL, and I am a staunch supporter of AVT and CIs does not mean that I think ASL is a bad or a dirty language. It’s just simply not part of my life, and that’s why I hardly make any mention of it.
My mother has said to me several times in the past several years that AVT would have definitely not worked for me if cochlear implants didn’t exist because I am stone deaf. I have absolutely no residual hearing. I actually was born with residual hearing, but I lost all of my hearing by the time I was 18 months old. Thus, during the time period when I had residual hearing, AVT worked well as I was able to babble some and say a few one-syllabus words such as “hop.” I was responding to my name when my parents called me. Just before I became completely deaf, I was saying “Aaaaaah” with my voice when I was playing with a toy airplane. After I lost all of my residual hearing, I was mouthing “Aaaaaah” when I was playing with it.
Just a few months after my parents realized that I was truly totally deaf, they knew that neither the AV nor the oral approach was going to work as I didn’t use my voice at all even though I was able to learn to lipread well as I picked up about 100 words through lipreading. (In case you’re wondering how my parents knew that I knew about 100 words through lipreading - my AV therapist in Massachusetts had a list of words and she and my mom checked the words that they recognized I knew.) Anyways, my parents were literally about to switch to ASL as a method of communication. My mom has said to me that if they had to use ASL as the mode of communication for me, they would still have been very involved parents and have to the best of their abilities given me the best of the best of life.
Throughout the first two years of my life, my parents did know about cochlear implants, but they heard mostly misinformation. They were told that I would only hear static or, at best, environmental sounds or we needed to wait another several years before the technology was more advanced. One of my mom’s favorite pieces of misinformation that she received was that cochlear implants were going to be too expensive to maintain as they would have had to pay $15 for replacement cables. I find that comment hysterical because nowadays, to replace a cable/coil combination, it’s $240! (I only have to replace mine about once a year, and it’s now covered by insurance as well.)
Anyways, just before my parents were about to switch to ASL, my AV therapist in Massachusetts spoke to another AV therapist in Canada who had a client who was recently implanted at the age of four-years-old at NYU and was doing quite well with it as she was picking up oral skills well. My parents were, of course, skeptical, but my AV therapist suggested to my parents that they go to NYU to check it out as an OPTION. She just wanted my parents to be presented with more well-rounded information. Thus, my parents and I went to NYU. At NYU, my parents met a four year-old girl who’d had a CI since the age of two years-old, and she was speaking and hearing beautifully. My parents were very impressed with her auditory-oral skills. My mother told me that it was meeting this girl that sold them on the implant. I can completely understand my parents’ perspective as someone who was recently diagnosed with RP, my parents do not want me to participate in any clinical trials for RP that are available at this moment as they prefer that the others be guinea pigs first, and plus, I still have too much vision, which is actually the real reason. Plus, they were also told by the professionals that they could not guarantee that the cochlear implant would work for me. They said that I could at least benefit by hearing environmental sounds for safety. Therefore, this four year-old girl inspired my parents to pursue the implantation, and they also realized that they had nothing to lose as I was totally deaf.
Within six months after my hook-up, I was already comprehending spoken language auditorally and was beginning to speak. Thus, my parents felt confident in their choice of the AV approach as they now had concrete evidence that it was working. Plus, because I missed the first critical two and a half years of hearing sounds, they didn’t want to take away any time from my learning to develop my hearing and English language skills. Thus, that’s why it was not best to add ASL as they felt that it would take away my critical time to develop my spoken and hearing language. Just as long as they were willing to be committed, AVT was going to work well, and it did.
To make my statement clear about my parents’ decision to give me a CI and to choose AVT as their method - They chose to give me a CI to make my life EASIER and to enhance the quality of my life, not to make me more superior than a deaf person who doesn’t have a CI. They wanted me to have the ability to enjoy the sounds of this world, to be alerted by the sirens of police cars and firetrucks, and to enjoy playing musical instruments. They chose AVT as their route because it was the best fit for my and my family’s lifestyle. English is my family’s first language and also my country’s dominant language. Thus, my parents wanted to give me easier opportunities to be part of my family’s life and the dominant society’s life, such as being able to have telephone conversations, listen to the radio in the car, enjoy listening to the television without captions, and converse in large group discussions.
Of course now, 18 and a half years later, my hearing and language have greatly surpassed those initial expectations. Not only that, but also the evolution of cochlear implants since my initial implantation has been rapid. When I was first implanted, I had a big box and wore the box in a harness behind my back. We could store only ONE map on that big box. When I was thirteen years old, Cochlear finally came out with an ear level processor. Since the first ear level processor came out, there have been three upgrades. The newest upgrade that I have is not only water resistant, but also it allows us to store up to four maps which is pretty damn cool as I can switch to different “hearing” modes depending on certain situations. Also, when I was first implanted, the FDA guidelines didn’t allow anyone younger than two to be implanted. Nowadays, according to the FDA guidelines, they allow children as young as 12 months to be implanted; however, surgeons are allowed to implant children younger than 12 months at their own discretion. Nowadays, being implanted at the age of two years is considered late. There is certainly a huge difference between a child who is implanted at the age of six months and a child who was implanted at the age of two years old. I recently received an e-mail from a mother of two deaf children who is raising her children with the AV approach, and one of them was implanted at six months. He is now 23 months old and is already speaking clearly in short sentences! When I was 23 months old, not only was I not speaking at all, but also I didn’t have an implant! I’ll be curious about the outcomes of my sister’s generation and the younger generation of CI users who were implanted at 12 months or younger 10 to 20 years from now and were raised with AVT or auditory-oral. I’m sure they’re going to make wonderful strides.
As I said at the beginning, just because I hardly mention ASL in my blog entries, that doesn’t mean that I’m against it. It’s just not part of my life. About only three or four out of about 20 of my deaf friends who have CIs were raised with the AV approach. Others were raised with the auditory-oral method, cued speech, or TC. Some actually chose to learn ASL later in their life just because they were interested in learning about the deaf culture and the language, and actually a few went to RIT. They all have very good hearing and spoken language skills, and they have no regrets about their parents decision. They chose to learn ASL as an interest.
When we meet up at CI conventions, we hardly talk about which methods we use. We could care less about which methods we used because, at the end of the day, we all agree that we’re happy that our parents have given us the best of the best of life, including the ability participate easily in the dominant society.
Rachel…
I think that your parents made the best decision for you, or you would not be blogging away :o)
We all the parents make the best decisions we feel are right for our child/children and when it comes to “differently abled” child/children, it presents an unique challenge for the parents, making them to weigh the pros and cons with a closer eye and to decide what would be best in the long run.
I know that you have nothing against ASL… just that it does not play its role in your life for now. But I appreciate your taking time to understand the role of ASL’s in deaf people’s lives and why it is strongly defended by some. The deaf community is made up of many niches. :o)
Comment by Karen Mayes — April 16, 2008 @ 10:22 am
Thanks Rachel!
Comment by mom2boys' — April 16, 2008 @ 10:26 am
Hi –
That’s the parents’ job to make sure the children to obtain the education, AVT and literacy.
I know it won’t be easy.
I believe that either hearing or deaf parents of CI/deaf children are the fighters to make sure any children to access the education and literacy.
Any parents have the right to make many choices for what the best for the child/children’s needs.
I believe that your parents made the wise decisions for you and your sister. You would be the same when you have kids with or without hearing loss.
Comment by White Ghost — April 16, 2008 @ 10:46 am
I am glad that your CI turned out so well for you. I am doubly happy that you comprehend spoken speech in the world around you thanks to your early CI implantation,..but when the CI is turned off,..you are still a young deaf woman!
Some people, who are “selling” the CI implantation are also selling the idea that the implantation will turn a born deaf baby or child into a totally hearing child!! This is not true. As you know, the CI merely give the deaf child an access to sound, which CAN be beneficial to the child and enhance that child’s access to the Hearing world!!
I had one woman,..uninformed about the true benefits of CI implantation,..tell me that the CI would LITERALLY change her child’s body structure into that of a hearing child. She became angry when I told her that the child would still be a deaf child physically, but would be given artificial access to sound via the CI!!
I don’t think that CI’s should be sold on the basis that a born deaf child can be structually made into a Born-again-hearing child,”..structually,..just on the basis of implantation. The deaf child’s physical structure at the cellular level stays the same,..all that happens in the installation of a CI is that the child is given a mechanical acess to sound!!
…Stanelle
Comment by Stanelle — April 16, 2008 @ 11:51 am
Certainly you and your parents have taken large risks and have been remarkably successful, and this turns out to be critical because in having Usher’s syndrome, one has to consider the possibility of losing vision later in life.
I am like you, Rachel; I am profoundly Deaf and also have Usher’s, but do not use aided hearing. Instead, I had every possible learning by visual means and know that this will be an asset if I lose substantial vision in the future. My ASL will stand me well in learning tactile communication.
Not all with Usher’s become blind or even legally blind. Many retain central vision into old age. CI’s that are working well is an excellent hedge against reduction of abilities. So is a command of visual(and tactile)language.
Again, it is not that you have been fortunate that upsets people, it is the tone that comes across as audistic, overoptimistic and overpromising of success; the reality is that AVT RESTRICTS VISUAL INPUT of language. Prohibition of ASL by most AVT therapists does not parallel the natural, multisensory learning of the average child.
Many feel this is dangerous where there are a substantial number that need ASL to learn language since hearing is inadequate for them even with the CI. Parents shouldn’t be fooled about this especially if their child is one of them.
Children with Usher’s Syndrome are in a special situation; those Deaf who are destined to become blind will need all possible tools with NO restrictions of any kind.
Comment by Dianrez — April 16, 2008 @ 11:57 am
Thanks for sharing with us about your experience. I understand that ASL is not a part of your life as much as I can understand that sounds are not a part of my life, and that I have no real desires to hear sounds. Fine-tuning my four remaining senses that I rely on to live a normal life has helped me to enhance the quality of my life. Speech therapy, supplementary education and mostly important, a real language (American Sign Language) helped to make my life so much easier. When I started learning ASL (as opposed to Signed English), it helped to improve my English comprehension and I started doing much better in mainstreaming. I was very fortunate to have had a deaf classmate who was mainstreaming with me, so I was able to switch between deaf and hearing worlds and to show the hearing community our Deaf identity. A lot of hearing people were fascinated and wanted to learn sign language, which we gladly taught them. The communication barrier was minimalized not only because of hearing students wanting to know signs, but also more awareness amongst our hearing peers that made it seem insignificant to them to make an issue out of it.
Comment by deafutahhiker — April 16, 2008 @ 1:19 pm
Rachel
You are not being criticised for your implants, or the fact that you speak, or are happy with your speech/ hearing skills/ CI.
The issues I take umbrage at, is for your lack of foresight and sensitivity when discussing the implant. Not so much the implant per se, and what how it can benefit the user, but that you have made some dubious choices, when picking posts that show the CI, et al in a positive light.
Particularly in your choices of posts by OPEN MINDED person, who’s posts are negative in many aspects, which you seem to disregard, in your quest to bolster the image of th CI.
You are young granted, and are at a different stage of life than I am, granted, and your path is set, granted. You are happy that is important.
From the tone of your posts, you seem to take things at face value, whereas I don’t. I am analytical and tend to read between the lines. And it’s what I read between the lines that I am picking up on.
So, when it comes to criticism, you need to be a bit more clued in as to what people are actually responding to.
Comment by Tony Nicholas — April 16, 2008 @ 8:06 pm
Rachel,
Thank you for sharing your experience. However, the sentence below does contain a slightly condescending tone that Dianrez was referring to:
“We could care less about which methods we used because, at the end of the day, we all agree that we’re happy that our parents have given us the best of the best of life, including the ability participate easily in the dominant society.”
I suggest using the phrase, “general society.” Using the term “dominant society” denotes that you recognize the power relations between the dominant society and the oppressed subjects of that society and that you espouse such an arrangement. Just in case you actually do not, “general society” is a more “PC-friendly” term.
I’m happy to hear that you do have CI-using friends who do incorporate a formed of signed communication (TC, ASL, so forth)– although ASL is not a part of your life right now, who knows what the future will bring? You and I aren’t that far apart in age, and I know that it’s easy to feel like your life’s path is clearly laid out at 19-20 years old
I do want to clarify that although I am a proud ASL-using Deaf young woman (I do have speaking ability, but choose to express that ability in private, among family and family friends), I do not discriminate against CI-users– ASL-users or not, we all still have common experiences one way or another, and it is unjust to reject one another because of our differences… I only become upset/alarmed when CI-using persons take on a very condescending and nearly discriminatory tone towards ASL bilingual-bicultural education and the Deaf community in general. Just like one should *ideally* be cautious about offending other groups of people, the same goes for being more conscious of the way you present yourself and approach certain sensitive topics. You do have a right to express your opinions, but I recommend having more sensitivity (i.e., avoiding generalizations and intensely subjective judgments, such as when you dubbed deaf persons as “selfish” in a previous blog) so that we can all communicate with each other respectfully and learn to truly listen to one another.
Thank you,
-Elena
Comment by Elena — April 16, 2008 @ 8:41 pm
deafutahhiker,
Thank you for sharing your experiences about your upbringing as an ASL user without a CI. I really appreciate it as you’re educating me how successful ASL users without CIs are living today. From reading your past comments and your blog entries, it seems that not only your personality, but also your parents being involved in your life attributed to your success greatly like me, right?
Comment by Rachel — April 17, 2008 @ 1:40 am
White Ghost and Karen Mayes,
Thanks for your comments. I see that both of you got the point.
PARENTAL INVOLVEMENT is the key!
Comment by Rachel — April 17, 2008 @ 1:44 am
Elena,
When I first came to DeafRead, I had very little knowledge of the deaf culture and the only knowledge that I had was the nastiness that I’ve received from the deaf ASL users over the years. Since I came to DeafRead, I’ve met some very nice deaf ASL users for the first time, and I’ve learned a great deal from them. So, please give me some time to understand better about the ASL deaf community.
Comment by Rachel — April 17, 2008 @ 1:53 am
Thanks, Rachel, and Elena for your recent remarks. Between the two of you and other people like you, we are all blessed.
Comment by Dianrez — April 17, 2008 @ 10:24 am
Like the others, “parental involvement” is a key factor in the success of deaf/Deaf children (and hearing children as well!) For me, when I was diagnosed with hearing loss at 8 months old, my parents listened to everyone (AVT, TC, and Cued Speech). Initially, they wanted to use all three methods (with a base in English - hence, oral spoken English combined with Signed English with cues as a tool to teach phonetics and correct pronouncation.) At the end, they decided to pursue with TC as the “experts” misled them to believe that all AVT (or “Oralists” were banned sign language exposure. The same was told by the Cued speech users - they turned us off when Mom mentioned using sign language as a supplement (for Audio + Visual English through speech and sign simultaneously). While I do know there has been research that states that the “Total Communication Philosophy” does not work (like in the other posts - one focuses heavily on one mode and drops signs or words) but for me, it worked. Not only could I hear English through my CI, I could also see the signs - so if I missed some words aurally, I could fill it in by catching the signed counterparts and vice versa. It gave me a solid base in English - especially in the academic setting (ie schooling). Of course, there are times where I will drop the signs and communicate orally (especially with non-signers) or I will drop the speech and focus on signs (with signers) or use both, either together or alternatively (like interpreting for a AVT deaf child I met at a camp for the deaf using ASL as a main mode of communication). The deaf children using ASL at the camp did not shun the oral deaf child because they were “different” or didn’t use ASL, but rather because they couldn’t (or weren’t willing) to communicate with them orally, and hence, the oral deaf child couldn’t communicate with them through ASL. This put me in a special situation - do I sign with them to encourage their involvement in the ASL-signing community, or do I turn to speech? Or use both? (In the end, I used sim-com to benefit both sides and interpreting for them until they grasped enough to communicate in other ways (pantomime, writing, gesturing, etc - speech or sign aren’t the only ways to communicate out there! Once I used Morse code to communicate with my grandfather over the phone! We’d bang blocks together using the phone as a “modern telegraph” but Grandma would weaken by the signal by yelling “Stop making that racket! I’m trying to watch TV here!”)
So back to parental involvnent - the only reason why I excelled using the TC method (and ASL separately as well) was because my parents took the time to learn sign (they chose Signed English over ASL as they already knew English and wanted me to understand English well and knew I could learn ASL later if I wanted to - I did, promptly at school when I was 3 - even at 3 I knew the differences between ASL and SEE and could code-switch easily, due to early intervention. Looking back, at my “self-contained” class but located at a school for the deaf alongside public schools, I see those successes lying with the children who made their children’s language acquistion a priority in their lives, compared to those who “neglected” their children and left them to acquire language at school. (We know that language acquistion does not happen solely at school, but outside school as well - it is a lifelong learning experience and we never stop learning!) Those who had parents teaching them language alongside with their regular teachers were the ones who were able to pull off mainstream education beautifully, with honors and recongition for their efforts, while those who did not, were stuck in the system being “semi-lingual” as they did not have a solid understanding of either ASL (the teachers used Signed English during official lessons and CASE (conceptually accurate signed English - using ASL in the English order) for the other activities and we had regular exposure to ASL by guest speakers from the Deaf community) or English (as they only learned it at school having no communication at home with parents who did not learn to sign or were not willing to communicate effectively with their child.) So, it does not matter which method one uses (whether it be AVT, Cued speech, TC, BiBi), in order for the deaf child to excel academically and socially is for parents to take charge to ensure language acquistion happens. (It also does not matter if the deaf child has a CI or not - it ist the language that makes CI successful, and a deaf child can be as succesful without one granted they are taught the right way). But, what is the right way for a deaf child to pick up language? We can argue all day on this - the AVT will support their decision, the TCers will do as well, and the ASL team through the BiBi approach will fight to the death. But we do all agree on one thing - communication is important for the deaf child to succeed. A deaf child using the AVT approach is successful. A deaf child using the TC approach is successful. The same goes for the other methods - but that only happens when the deaf child has a support team backing them up (parents, teachers, neighbors, relatives, interpreters, captionists, audiologists, speech/language pathologists, Deaf role models, Hearing role models, etc etc).
As for me, I find it benefical to know all the approaches and be able to use them according to the situation at hand (oral English with a hearing person, ASL with a Deaf person, sim-com with my parents, Cued speech with that child i encounter at a Deaf gathering, being able to code-switch between ASL, PSE, SEE and all sign systems out there depending on my correspondent’s preferences. Why? We all have a desire to make communication happen.
(PS I apologize for my long-winded comment, but I’m a writer! *grins*)
Comment by Katie — May 12, 2008 @ 8:36 pm