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Cindy’s Story

March 4th, 2008 by | Tags: , , | 57 Comments »

I’m a lurker on the Nucleus Forum, Cochlear’s users listserv. There has been a discussion on an e-mail that’s been circulating called “Bad News about Cochlear Implants” (I’ll blog about that another time), and I came across a post from a cochlear implant user who is actively involved in the deaf community and was against CIs for awhile until she came across some things that changed her mind. Her story was such an inspiration that I e-mailed her privately and asked her if I could post it on my blog. She gave me her permission and here is her story:

I just want to point out something in regards to the Deaf community, actually just to share my personal experience…..

First, understand that I myself was amongst those who are against CI’s. I grew up deaf, have a deaf sister, am married to a deaf man, and am actively involved in the deaf community. I feel a need to explain a few things…

I am a paraeducator working with special needs children, K – 4. When I first began my job 23 years ago, I worked in a middle school classroom. There was another classroom that had oh about 8-9 deaf/hh students. The communication mode in that classroom was Total Communication. As a deaf adult fluent in ASL and the deaf community, I was sometimes asked to visit this classroom and work one on one or in groups with the deaf/hh students. Some wonderful fun times!!

Over the course of 23 years, I have worked with several students that were implanted, probably somewhere around 7 students, total. Only ONE of these students wears his implant today. Whatever the reason was………it gave me the idea that implants were BAD. I could not for the life of me figure out WHY any parent in their right mind would put their child through surgery for something that did NOT work. I did not have the first hand experience of witnessing a child SUCCESSFUL with a cochlear implant. Even the ONE student that I knew could hear with his, did not spell SUCCESS to me. His speech was not good, he didn’t hear much more than his name being called, he still depended on sign language, his equipment was either broken or the batteries were flat…all sorts of negative signs.

So you can well imagine, if I was in the company of other deaf adults, and just one person said, “cochlear implants are BAD” I was wholeheartedly
agreeing!! (tsk, tsk!)

So how did I get to the point of acceptance? It was about two years before I made the decision to go with my own CI; I had to write a term paper for a class about language acquisition in deaf children. It was then that I stumbled on professionally written material regarding cochlear implants in children. My research impacted me in such a way that I became intrigued by the positive reports and the advancements in technology, and I expanded on my paper to include the role of the cochlear implant in a child’s language development. All was done and good; I turned in my paper with the knowledge that well, perhaps cochlear implants could be a good thing IF the parents really worked with their child and set aside the time, money and patience to guide them through their rehabilitation. It had nothing to do with me; I was a successful deaf adult quite settled in my ways and living a happy life.

A few years later, I became ill with daily vertigo attacks, balance issues and lost the ability to wear my hearing aid due to Tullio’s Phenomenon and Meniere’s Disease. I was devastated because I could no longer hear sounds that I had, such as deep piano keys, my dogs bark, doors slamming and some
(deep) voices. Nothing, absolutely nothing, accompanied things that made sound now. My doctor suggested the CI, and I actually got upset with his suggestion. Then, a few days later, I remembered my research on the CI’s. I decided that it might be worth a try, because I was already deaf. Either it would work, or it wouldn’t. I’d be in the same boat as I was if it didn’t work. But what if it DID work? Would I like it? Would it make my life better? Could I talk on a phone someday and have a regular conversation by hearing and speaking to people? All my poofed dreams of the past might actually come true. Could I make time in my life to learn to hear with this technology? Could I afford it? Would my deaf friends think I’d gone insane??????? I made the decision to give it a try. It’s within my nature to be curious and try things, at least once. :)

The choice I made had a wonderful outcome, and I chose to become bilateral almost immediately afterwards, but my point is: I had to be EDUCATED with FACTS in order to accept the whole idea of cochlear implants.

Even though it irks me that somewhere, someone took advantage of cut and paste and some sort of editing tools to start a “Bad News about Cochlear Implants” email circulation, I am also aware that there are MANY deaf, Deaf, HH people out there who have yet to understand and be brought up to speed on the positives about cochlear implants. One of my close Deaf friends (graduated from NTID) did not even know that a cochlear implant is removable for sleeping at night!

Yes the Deaf community is struggling with the idea of implanting children and babies. Some have very interesting points of view in their arguments.
Others are basing their opinions on myths. I understand them. I was in their shoes once. The choice to implant is so very individual, but the choice to learn in an unbiased way is also very individual. Choices can be difficult.

We learn best by example. In the time that I’ve been implanted, my best friend chose to get a CI. Then my husband made the decision to get implanted. Now my best friends husband is anticipating his bilateral surgery!!!!!!!

Granted, they (CI’s) are not for everyone, and even some who do get implanted do not have the best results…..but I feel everyone deserves to know the facts about cochlear implants, and base their opinions on facts, not myths. I look back now and realize that all that I’ve known, all that I’ve learned, has been for my own good. I’m so blessed to have had such positive outcomes with my CI’s.

57 Comments

Another mum

March 4, 2008 at 8:43 pm

Cindy, thanks for sharing your story here. It is great to hear from someone who have actually been on both sides of the “debate” as such and can bring another perspective to the discussion. I am so glad that the CIs have been so successful and you are now able to hear those sounds again.

March 5, 2008 at 4:41 am

One of the biggest irritants for me about the anti CI stance that some Deaf people take, is the fact that may of these people wear hearing aids. These hearing aids help them with lipreading, with speech patterns, with some sounds around them, even if it’s not 100% clear, it still helps.

I have a very unusual loss. I am totally utterly deaf. No hearing aid can give me one iota of sound. Even my failed implant is giving me a little sound, even though it’s not much – just enough for me to help me with lipreading.

To me, wearing a CI is no different than wearing a hearing aid, the only difference is that you need an ear operation to get one :)

Cheers
Robyn

Mother of two

March 5, 2008 at 7:19 am

I know someone who had the same disease as Cindy, she is Deaf as well. She had the operation for CI on her doctor’s suggestion. The minute she had her CI turned on, things became EVEN worse for her. She ended up that she couldn’t drive because she suffered from dizziness even more and all that. She couldn’t even go to work. She even had to fight with her insurance company to have them to pay for the removing the CI. The insurance company refused, but finally after showing proof and all that they eventually allowed it but til then, she had to suffer even more.

For adults, you can go ahead and get CI, it is totally your choice. For children, I am sorry but I am against it because it is a surgery that is not something that you must have. I consider it comositic, like all of these face lifts and etc.

March 5, 2008 at 10:53 am

Parents of deaf children have the right to make an informed decision on whether to get a CI for their deaf children or not. Other people may not like seeing that decision. But basically it’s not anybody’s right to try and stop a parents’ informed decision to go ahead with a CI anymore than stopping a parent on the decision for doctors to crack a child’s severely bowed leg bones and help them grow straighter so the child can walk and run better in the future, even though it’s not “life threatening.” It is certainly not a cosmetic procedure. Many children have cosmetic surgeries down to correct severely deformed cleff palate. But then again, who are you to try and stop a “cosmetic” procedure anyway?

John Critser

March 5, 2008 at 12:25 pm

Something just hit me, and I was in totally harmony with my thinking:

Cochlear Implantation is HYPE, nothing more than that. It might have produced results the implantees, both good and bad results. But it’s HYPE. Like Segways, it has spread and we see segways everywhere. Digital hearing aids became popular over the old ones. Everything is digital now. That’s hype. There is hype over HDTVs. People are into flat screen TVs now. Everything has good and bad results. Cochlear Implantation is just particularly invasive, and while many revel in it, others feel it produces disastrous results.

But the HYPE is real.

John Critser

March 5, 2008 at 1:52 pm

Every product, whether for leisure, for technology, for personal needs, are sold with the help of powers of persuasion in convincing consumers to buy, buy, buy, regardless of who pays for it. Everything is rated, one star, three stars, or four or five stars, based on quality, success rate, and other ratios.

One great example I love to use is the WINE example. Fine wine can be bottled at cheap prices or at expensive prices, psychologically the wine with the more expensive prices will taste better. Expensive wine might be better, too but there are cases where the same wine can be purchased at lower prices.

The CI can register in our heads as superior to hearing aids. They do work for those who have no residual hearing in order to use the conventional digital hearing aids. But for those with residual hearing, it’s a more drastic option in getting a CI, as invasive it is surgically-wise.

We should support anybody who wants a CI and offer the same support to those that don’t want one.

Sadly, every individual who chooses to receive a CI will face odds, whether in the low or high percentage, of experiencing side effects or disastrous results. Infections do happen. Some consequences are temporary, and some end up long-term, with treatment. It’s the same with any other surgery which complications do arise at times. A CI implant is no different than any other surgery that turns up complications.

March 5, 2008 at 2:45 pm

Yet, once again, John, he has failed to acknowledge that there are many who do have CIs have done well in the speech and listening skill area and would not have been possible without CI. Granted, there are those who have had marginal results down to complete failure to see results. But your writings continue to betray you where you go from “We should support anybody who wants a CI…” and quickly switched to a negative tone “Sadly, every individual who chooses to receive a CI will face odds…”

Why is it “sad” to you if a person who decides for a CI knows that it’ll take work and is willingly, positively so, to do that work in order to enjoy the benefits of what a cochlear implant has to offer? This is the reward in overcoming adversity. It’s like you saying to me and to many others who are successful in the use of their hearing aids or cochlear implants that they have not really derived any benefits whatsoever in acquiring crucial speaking and listening skills and all of their efforts are totally in vain. Ironic seeing this as I type this out during my one hour lunch break while listening to Rush Limbaugh on the radio station understanding every word he’s saying because Rush Limbaugh wears a cochlear implant as well.

And now, your new excuse is about the sad facing on overcoming these “odds…” as if it is a futile effort.

Go figure.

John Critser

March 5, 2008 at 4:00 pm

McConnell, you are in fact twisting my words. I believe very strongly you are twisting my words or misconstruing what I am saying. I gave both sides of the coin, and no less. If you didn’t intentionally twist my words, then you did not understand in context what I was saying.

I was stressing we should support ANYBODY who wants or does not want one, to support both sides, instead of being one-sided and biased. I would be ambiguous in supporting people in whatever they want to do, while educating them that in using ASL as a primary language does not put them at any disadvantage.

The other side of the coin on the CI community side is that when they support those who get CI that oral/aural skills is a must to function in the hearing world, that there is “no need to learn or sign in ASL.” That is a different POV in educating the individual receiving the CI. Those in Deaf culture rather educate about the potential of Bilingual education for the CI implantee.

I was speaking honestly about how sad it is that we have to face odds, whether in the high percentage or in the low percentage, that complications can arise from getting a CI. That is something we cannot be continuously in denial about.

John Critser

March 5, 2008 at 4:18 pm

By the way Rush Limbaugh has nothing to go with Deaf culture even if he has a CI. He was hearing, and lost hearing, and went out and got a CI which works for him, and functions as a hearing person. He grew up hearing and a quick adjustment with the CI made the difference. Results can be different for those born Deaf and implanted after age one. You’re talking about a hearing person who went through a period of time with a hearing loss late in his life and without missing a beat, he just went out and got a CI and resumed his life normally. In those kind of cases I think that is what a CI is most successfully tailored for.

But we do make the argument that it is impractical to implant babies due to many reasons, one of being not empowering the child to make decisions.

But what can we say, because the parents will say they want to be able to make the decisions for their children.

And that is normal, and expected.

Another mum

March 5, 2008 at 5:16 pm

John

as has been said here before, it goes beyond just “parents will say they want to be able to make decisions for their children”. The research is in, the earlier kids get their implants, the better the outcomes. You have spent previous paragraphs talking about the risks, those that don’t do as well as expected, facing the odds etc etc – so then why would any parent not move to ensure that their child had the greatest chance of a successful outcome with their implant? The reality is these young kids/babies are not in a position to “be empowered to make decisions” at the time period that research shows us is the best timeframe in which to gain optimal outcomes for the implanted child.

March 5, 2008 at 5:36 pm

Nice weave and dodge, John. There is a difference between giving support versus acknowledging what worked for that deaf/hh person did in fact work very well (along with many support and understanding from parents, educators and what not). You just cannot bring yourself to say that. Even for Rachel. Quite transparent in seeing this. Yet, you continue to evade ONCE MORE with your patented “dodge and weave” method here. Acknowledging what really have worked for one (and not for others) is not about being “one-sided” or “biased” but about the simple fact of the matter what worked for one person did indeed worked quite well.

It’s not about Deaf culture but about accepting deaf, hard of hearing and Deaf people into the fold into one community. Rush Limbaugh is late deafened and he is welcomed into the deaf/hh community with open arms. Are you penalizing him just because he was once hearing and now is deaf but choose to continue speaking and listening with the help of a cochlear implant? Are you discriminating against Mr. Limbaugh on that basis alone?

Rush Limbaugh is just as valuable as a deaf member in the deaf/hh/Deaf community (even if he doesn’t want to be a part of it – he might be, I don’t know) as the next late deafened person. It doesn’t matter if they prefer sign language, ASL, SEE, cued speech, hearing aids, cochlear implants, using their speech or whatever. That’s a true support mechanism and not some false mask that some people hide behind in the name of “Deaf unity” thinking ASL is the answer and salvation for these people. Not about Deaf culture.

As for “odds,” I don’t see it as “sad.” It is no more “sad” in facing the odds by being a deaf person him/hefself. Though it builds character. But one thing for sure, John, not all babies are born “Deaf” but either as a deaf baby or with a hearing loss (e.g. mild hearing loss) or born into a Deaf culture (ie Deaf parents) just as a baby is born into a Catholic family. Babies are not born as a Deaf person but can grow up into one. The very act of saying “Deaf baby” does suggest by those who readthat the Deaf culture owns that deaf/hh baby.

Lastly, babies are unabled to make decisions for themselves. You know that VERY well, John. Babies are unabled to be empowered to make any decisions in the first place for quite some time over important decisions. Parents are there to make these crucial and important but decisions for their sons and daughters everyday. It’s all about this window of opportunity and it is only available during the first 3 to 4 years of the baby’s life when it comes to hearing aids or cochlear implants and the ability to understand and produce speech later on. Rachel and her sibling are a good example of that by taking that opportunity. I thank my mother everday for her persistent, love, and understanding in allowing me to have this ability to speak and listen, and even enjoy talk radio whenever I want. Early intervention and perserverance paid off quite handsomely for me.

Thank you, Mom and Dad!

March 5, 2008 at 6:25 pm

McConnell, you know clearly that I am focused on the Deaf culture issues. I am not really interested in the mainstream issues in the hearing world. I do have hearing friends but it does not take anything away from the fact I am completely immersed in the Deaf world. I have hearing in-laws and I love them very much and it took me a long time to adjust to having hearing in-laws and even embrace their point of view, but family is important. It pertains more to the public point of view, from the Deaf community point of view, some of which can be more extreme, and others milder.

I even said that the CI worked for Rush Limbaugh, didn’t I? Let me quote myself from comment #9: “He was hearing, and lost hearing, and went out and got a CI which WORKS for him, and functions as a hearing person. He grew up hearing and a quick adjustment with the CI made the difference.”

I had to choose between the continuation of early intervention in my life versus opening myself to the Deaf culture and gaining 100 more friends.

For example, I grew up with say, 20 oral friends in the oral programs. Approximately 10 of those friends are fully integrated into the hearing world and if I was like them, they would be my only Deaf friends- TEN of them! If I wanted to meet their friends, they would be all hearing people nonchalant to my deafness and the needs therewith.

But the other ten oralists I grew up with, they have integrated themselves into Deaf culture while retaining their roots. I was introduced to their Deaf friends, and my circle grew bigger and bigger. If you had to pick an egg from the batch of eggs, you could just pick any egg, they were all Deaf like me, with the same cultural roots as me, and the same signed language as mine.

So much for early intervention!

Another mum

March 5, 2008 at 7:42 pm

“If I wanted to meet their friends, they would be all hearing people nonchalant to my deafness and the needs therewith”

Nothing like a sweeping generalisation eh? John this is the point that I feel is completely misunderstood by some older Deaf/hearing impaired people. I say, some because McConnell, is one that does get it.

That is that the outcomes for the vast majority of oral kids today is very different from the vast majority of the past. I am not talking in terms of “success in this or that” I am talking about ease of communication. The younger kids today are able to hear so well with their implants that going to a friends house where they would all be hearing people is a total non-issue! My son does it all the time. He goes to a mates place and he has mates from youth group or from the local neighborhood, whatever. Kids my son has never seen before let alone met or hung out with. It is not an issue, they communicate with him as they do with their other friends.

Each to their own, if people want to adopt ASL and Deaf Culture great! But lets not make it appear as though this is the only way in which people will widen their friendship circle or find acceptance in a group of friends.

You say that all of the group that you met had “the same signed language as mine”. For my son all the groups he meets also have the same language as him, just happens to be spoken english not sign.

March 5, 2008 at 8:35 pm

John, you comment about Rush Limbaugh says NOTHING about you accepting or seeing him as a vital member/person in the deaf and hard of hearing community whether Rush want to be a part of or not and that he now shares the same common pain as the rest of us. The communication access and needs. You’re bobbing and weaving again.

Is he or is he not now a vital member of our deaf and hh community? Would you even welcome him with open arms…with no strings attached…even if Rush doesn’t want to bother with people like me (deaf/hh) or Deaf people?

Another Mum said it well. Today’s technology is vastly much better than it was 20 years ago. Today’s educational approaches on dealing with deaf and hard of hearing kids in school are better informed on the methods needed, including the use of technology (e.g. CART, FM loop, better hearing aids, cochlear implants, optional services such as cued speech, ASL, SEE, and so on). Although I’m not saying things are perfect but things are moving forward positively so.

March 5, 2008 at 10:29 pm

I would welcome Rush Limbaugh with open arms as a human being and I would even ask for his autograph. He is a vital member statistically as a clinically deaf man in one ear and partial hearing loss in the other. I am not sure if he has done any charity work for the Deaf causes, though.

Jeremy

March 5, 2008 at 10:30 pm

John,

Can you kindly stop commenting about cochlear implants? I’m tired of reading people saying or naming cochlear implants and people with cochlear implants as bad things. We know the risks and we get it. So you can take your insulting thoughts out of my eyes and out of Rachel’s website.

Implantee is not a word, so don’t use it. Stop capitalizing cochlear implant. It is not a brand. Your twisted words make no sense. Who cares if you have more friends?

My parents didn’t make the decision for me to have cochlear implants. I did. You commented like there’s no child who can make choices for himself/herself.

You said, “Sadly, every individual who chooses to receive a CI will face odds, whether in the low or high percentage, of experiencing side effects or disastrous results.”

You need to specify which individual. Because I’m no “every individual.” I don’t need your pity. I don’t think “every individual who chooses to recieve a CI” will need your pity. I don’t give a crap about your pity because SOME deaf people – for example, YOU! – would not believe anything with their own eyes. The only odd / side effect / disastrous result of being a cochlear implant user is to read your whining comments.

California Grandma

March 5, 2008 at 11:00 pm

Rachel,

Let me thank you for all the time you spend giving us a glimpse into your life and that of others. You open doors into the thoughts of other people not just your own and I value this tremdously. You boldy go where adults much older than you dare to only visit. Thank you, thank you, thank you. And give your parents a hug for me, they have given us a blessed gift by sharing you and your sister.

March 6, 2008 at 12:30 am

Jeremy, your comment is irrevelant to me. I am not going to get into a diatribe with you.

March 6, 2008 at 8:43 am

A little weave and dodge there, again.

“He is a vital member statistically as a clinically deaf man in one ear and partial hearing loss in the other.”

Rush is a deaf man…not a statistical number…not a clinically deaf man…but a deaf man where we see him as a vital member of the deaf and hard of hearing community (that’s everybody with a hearing loss, btw) regardless of his preferred communication method. And whether he wants to be a part of the community or not. There was no need to add “clinically” or “statistically.” He is, plainly, a deaf man with a cochlear implant who now shares the many of the communication concerns as the rest of us. I question your motives for doing that.

March 6, 2008 at 11:50 am

well, clinically and cultural are two different words. Is he in Deaf culture, or involved in Deaf culture? No. But is he clinically deaf? Yes. Statistically, yes, because even though he is not a Deaf cultured deaf man, or even active in the CI deaf community, then he statistically exists as part of the hearing loss population.

March 6, 2008 at 12:16 pm

Doesn’t matter if a person is involved in Deaf culture or not. What matters is that Rush is a deaf person and he is welcomed in the deaf and hard of hearing community with open arms, even if he doesn’t choose to be involved in that sort of thing. He has his own life to live. And I understand. I don’t use “conditional requirements” against a deaf or hard of hearing person or attempt at demarcating the person from everybody else just because a person choose a different way of communicating. Doing so is simply practicing discrimination using that against a deaf/hh person.

March 6, 2008 at 1:33 pm

McConnell, you are deriding me because you are using psychology reversal about “welcoming into the Deaf and hard of hearing community with open arms.” I was just stating that Rush Limbaugh is statistically clinically Deaf.

If one is welcomed in the Deaf and hard of hearing community, one has to become active in it. Or shall we call Rush Limbaugh an inactive member of the Deaf and hard of hearing community? Or shall we proclaim him a member in his absence?

Is that what you are saying?

What is community, the entire population of individuals with hearing loss, or those who are active in the Deaf/HOH community?

It’d be nice if we were in Germany, where the government donates entire skyscraper buildings and all of the floors for Deaf clubs. It would fit the whole deaf/hoh population.

As long the German Deaf/HOH patrons don’t protest against the German government.

Or the buildings would be taken away and relegated to another use.

Karen Mayes

March 6, 2008 at 1:34 pm

Ping, pong, ping, pong…

Rachel

March 6, 2008 at 1:41 pm

Karen,

You crack me up! That’s what I totally see too – Ping, pong, ping, pong…

March 6, 2008 at 2:05 pm

Except I can be good at ping pong, too. I just miss sometimes.

March 6, 2008 at 5:30 pm

Being “active” is not a requirement to be a part of the deaf and hard of hearing community. Just knowing that it’s out there and there are people who do and will support them is enough. Nothing about culture here else it’d be one of those “conditional requirement” again in order to be a “member” of some community. We’re all a part of that pie except that each slice has a different flavor, but still a pie. It’s either you accept them or you don’t, and what works for them works well. No one size fits all philosophy here. I have no problem accepting people with hearing loss. I place no boundaries in front of them. I place no “requirement” against those who have a hearing loss and see whether if they’re “fit enough” to be a part of the deaf and hard of hearing community (which, btw, includes everybody with a hearing loss, culture or not, because “D”eaf connotes a conditional requirement…can’t do that). Accept them and give them kudos for what works for them. You still haven’t done that. Certainly not to Rachel. That was plaintively obvious. You refuse to even try or acknowledge. Why?

Sorry, Rachel. :-p

Yeah, John. You do miss sometimes.

Rachel

March 6, 2008 at 5:36 pm

Mike,
No need to apologize. I’m glad that you’re here to support me. :o)

March 6, 2008 at 6:32 pm

Mike, do you honestly think I discriminate against other deaf/hoh people, being Deaf myself having been discriminated against before?

I just categorize the different groups of Deaf people and statistics is part of it. Deaf culture is a very distinct culture. The CI community breeds. The mainstream society with hearing loss is part of the equation but we have to offer them options to choose from.

There is such a thing as being active and inactive in any community, anyhow, as members. I do think that if there is a deafened person out there in the mainstream invisible, that nobody knows about, counts as a statistic, because all we know is how many people are deaf or hard of hearing. Then if that person comes to us for more information, we welcome with wide open arms and invite them to become part of our community.

We even welcome the CI implantees with open arms as long they stay humble. Humility goes a long way.

March 6, 2008 at 7:15 pm

Before I succumb/respond to your patented weave and bob responses using a question as a response on discrimination using the “how dare you!” type of tone, you haven’t acknowledged what worked for in Rachel’s instance (with the help of her mother) that her C.I. did indeed work quite well with her in the language, speech and listening skill area. No kudos for her for her hard work on over-coming the odds (of course, early intervention played a big role here) that you find sad? I sure hope you are as humble as you say you are. Humility goes a long way here if you get my drift. I don’t see you exactly as being open armed in this whole instance towards Rachel.

We’re waiting…..

mom2boys'

March 6, 2008 at 7:39 pm

Ok…I’m just a mom…to a child with an implant. My concern here is that you keep saying “empowering a child to make decisions.” Obviously the research in early access to sound is crucial in the development of spoken language. Why do you think many of those who you speak of as failures are “failures?” My child was not diagnosed until 18 months of age. He passed the NBHS. He did not become a cochlear implant candidate until he was 5. He was a listening speaking child with hearing aids. I don’t know where that puts him in your category; however, I do know that with the implant he hears at 20-25 dB. This decision was made without empowering him. This was made in his best interest. We researched, studied, and prayed about this. So quit with the excuse of not empowering the child. If your child was walking toward an open flame would you, the parent, stop her or empower her by letting her make her own decision. And before you say…this is not the same….ci’s are cosmetic….tell that to my little guy who loves his implant. I’m glad to see that you would accept him as long as he knew his place. After all he’s just hype.

In an earlier blog you stated that you chose to learn sign language at age 12….forgive me if I have the age wrong…..I assume you’re fluent. So I guess it is quite possible for my son to learn ASL at a later age when he chooses to do so.

March 6, 2008 at 8:17 pm

I arms are wide open to Rachel as a fellow human being and as a fellow deaf person. We may not agree on CI issues, though. Is that civil enough, Mike? Reasonable, too?

If I met her, I probably would just talk about life in general and forget that we ever debated in her blog. That’s the type of person I am. Then we both might go whoa! You’re the CI blogger and I am the ever-condescending commenter! We’d probably laugh with each other how far it has gone but look here, we are two normal human beings..personable, amicable, and civil.

March 6, 2008 at 8:18 pm

typo in #31- I arms=My arms

March 6, 2008 at 8:22 pm

mom2boys- yes it’s possible for your son to learn ASL later in life if he chooses so. Yes, some children embrace the fact their parents allowed them to get CIs at an early age. It’s a lifestyle a child grows up with and becomes accustomed to in absence of any series of complications. However, if complications arise over a course of a child’s lifetime, then there would be some second-guessing in that child’s mind, surely. That was actually what I try to pinpoint. I may not articulate my thoughts as well as others do.

March 6, 2008 at 8:55 pm

John, you haven’t answered my question. Please stop with the dodging and weaving by avoiding the ultimate question we are all waiting for. You know exactly what I am talking about. You have NOT acknowledged Rachel’s excellent use of her C.I. in the speech, language, and listening skill area and that early intervention played a huge role in this. If you continue to dodge and weave it would only prove one thing and that you continue to be disengenuous in this whole matter regarding Rachel’s development, her choices and preferences on mode of communication. This isn’t a “CI” issue, this is something that has a proven and tangible result seen in the physical form called…Rachel. You continue to deny her presence in that regard. Let’s not do this “I’m all open arms,” game when you have already denied the very successes that Rachel have already shown to the world. It’d be patently insulting to do so. Please answer the question, John.

March 6, 2008 at 9:09 pm

McConnell how can I answer the question realistically if I have never met Rachel in person or seen how well she speaks in person, with aural skills with the aid of the CI?

And how can I comment how well people use their C.I.s if people who wore hearing aids also did as well or nearly as well?

That kind of determination requires meeting in person. Getting a CI does not improve writing skills, even language skills. It’s more of an aural and auditory issue with CIs.

Rachel

March 6, 2008 at 9:14 pm

John,

Just watch a video of me to determine how well I speak -

http://www.youtube.com/watch?v=Sx1nyxvRhzU

Another mum

March 6, 2008 at 9:56 pm

“It’s a lifestyle a child grows up with and becomes accustomed to in absence of any series of complications. However, if complications arise over a course of a child’s lifetime, then there would be some second-guessing in that child’s mind, surely.”

So thus the converse of this statement has the potential to be true too then? That is if “complications arise” in ease of communication for a child raised without the benefits a cochlear implant might provide them, and then they become aware that they may have had much better access to sound, to speech, than they had with hearing aids – then they too could be second-guessing in their mind, the decision of their parents not to implant them at a young age when they would have maximised their benefit from the cochlear implant.

March 6, 2008 at 10:34 pm

testing….

March 6, 2008 at 10:35 pm

Well, John, for one, her mother made clear of how well she has done because of her CI. Did you not know about this one? It’s been on Rachel’s blog for, like, um… forever? It’s under her “Life” section by moving your cursor over the 2nd top picture. You’ll find a lot of videos, too. They sounded fine to me. Clear, too.

March 6, 2008 at 10:37 pm

I suggest strongly that you read Rahcel’s story from the eyes’ of a mother and see how well she has fared in her speaking and listening skills.

Oh, believe it or not, John, language skill development is and can be predicated on the ability hear spoken words. And by doing so it can help develop internally the grammatical rules of English, for example. A mystery and wonder of the brain to do that sort of thing. This has already been proven. Most kids don’t learn to write until they are about 5 or 6 years old. So, grammar has to start from somewhere. Hearing is one of the few ways where language can be developed and improved upon, even grammatically. Don’t believe me, look no further than the Navajo Indians. Though it is just NOT the only way on how language is developed.

March 6, 2008 at 11:21 pm

Rachel,

I just watched your youtube video of you speaking. From reading your lips, you speak very well, similarly to a hearing person. I could see that you took care to say the “sh” sound. I need to get new ear molds for my hearing aids then I would watch both yours and McConnell’s videos again for sound quality.

With ASL, I can see a wide assortment of facial expressions. That is why I enjoy the language. With speaking sometimes, the face stays the same while speaking a litany of monotone. I’d like to see the lips curl to a smile, one end of the mouth closed while the other open murmuring, the eyebrows pursing and loosening up, the grin while voicing it out, and the exaggerated mouth movements.

All in all, Rachel’s speech is excellent, but as for functioning in the hearing world, both a non-speaking (mute) Deaf person and a affably speaking Deaf person can get the same results. The key to successfully co-existing with the hearing world is attitude and keeping up with the pace.

March 6, 2008 at 11:23 pm

typo- a affably – correct one is “an affably”

March 7, 2008 at 9:30 am

Uh, John, she only used the ‘sh’ part once in her entire video and that was for the word “finish” and she said it perfectly. There were no other words that had the ‘sh’ in the entire video except for “finish.” In fact, anybody can say “finish” without moving their lips much, even the “sh” part and can say it perfectly. So, lip reading doesn’t see everything what a person is saying, obviously. Lip movements come in variety shapes and sizes when it come to speaking and enunciating the words. Some move their lips small but enuciate all the words correctly just as others have more “expressive” lip movements and enunciate the words correctly. Rachel enunciated all the words quite fine and I, and others, can understand each word she says simply by listening to her (without viewing the video but listening to it).

Rachel’s voice was certainly not monotone. It was rich in inflection and tonality, exactly like what a hearing person would do but no one person is the same when it comes to talking. There are differences and I can tell in this one though she speaks just like the rest of the hearing people. The key thing here is that her CI allows her to communicate much more easier with a hearing person in both speaking and by listening.

March 7, 2008 at 11:30 am

If you go to http://www.youtube.com/watch?v=-Ae2VW6NMZE you will hear Jessica speaking as well. A transcript of what she says is below.

Hi, um, my name’s Jessica Chaikof, and I got my first cochlear implant – nooo – [laughter] Well, I’m 12 years old, and I got my first cochlear implant in 1996 when I was only 15 months old. At the time, I was the youngest child in the country to get my cochlear implant. And, in 2004, I got one for my right ear, and now I do well in school. Um, my favorite subjects are English and Social Studies ’cause they’re fun and I (laughs) …That’s all I can say.

Sharon

March 7, 2008 at 6:26 pm

I have implanted kids who had no residual hearing at all. Their aids were completely ineffective, though we gave it a good shot during their trial as part of their candidacy for cochlear implantation. Luckily, with early implantation, they have completely normal speech and audition.

How John can call their ability to hear easily “hype” is beyond me. They can hear easily with their back turned… at a whisper. I read story books without them ever wanting to make eye contact. What a strange way to refer to something which has enable their lives to be so clearly easier! If it wasn’t easier, you wouldn’t see the need for things like captioning… translators… and so on.

The idea that we parents would selfishly choose to wait it out so that the child could experience “Deafness” or make their own choice (so it wouldn’t lie on our shoulders) is ridiculous. Nothing would make less sense. Hearing parents who wait it out are risking a lifetime of disability rather than inconvenience. Talk about creating our own Tower of Babel.

March 7, 2008 at 7:16 pm

We will be waiting for you, John. How long will it take for you to get your new ear molds? 1 day? 1 week? 2 weeks? 1 month? 3 months? 1 year? Um, never…..? Or is this one of your newly patented bob and weave excuse? I’d like to believe but….it does sound very much like what a kid would say to his teacher that his dog ate his homework hoping to get out of it.

Meanwhile, you can get a hearing friend of yours to listen in your place and that should work well for you. Call him/her on your Sidekick or email the person the URL addresses to Rachel and my website containing the video links. How long will that take, btw?

March 9, 2008 at 1:25 am

McConnell, I have to go through the hassle of reinstating my medical insurance in order to have it cover the cost of ear molds, and right now insurance companies are authorizing CIs at a faster rate they will for my ear molds.

Nice bit of red tape!

I’ll arrange for a hearing friend to listen Rachel’s and your speaking vlog. I might bring along ear plugs to see if he can read your lips, too..

Karen Mayes

March 9, 2008 at 8:22 am

I am saddened to read the scornful, patronizing comments…

We need to take one thing into consideration… what percentage of animals living on the earth has hearing? You notice at how the sick, old, disabled animals are quickly discarded (or EATEN), all for the survival of the species? When I hear “D”eaf people claiming that being deaf is God’s gift, I feel sad, because they forget one thing: we are lunch!

We all have our own disabilities (emotional, physical, etc.) and our biggest disability is our tendency to judge people, being quick to look down on people whose opinion and lifestyle just happen to differ.

Anyway, we are very lucky that some big-hearted (HEARING)people go through trouble to ensure that we have the opportunities for surviving, leading productive lives. I know we all have a strong desire to define ourselves. But we all have to acknowledge that hearing plays a large role in practically ALL the societies on the planet Earth. So we need the resources in order to survive. Science and technology, largely run by HEARING people, enable us to lead productive lives.

California Grandma

March 9, 2008 at 2:06 pm

John
“McConnell, I have to go through the hassle of reinstating my medical insurance in order to have it cover the cost of ear molds, and right now insurance companies are authorizing CIs at a faster rate they will for my ear molds.”

Why did you let your medical insurance lapse?

March 9, 2008 at 3:06 pm

It cost me a mere $40 bucks to get my ear mold done. Insurance for ear molds? A new ear mold for every 3 years. That’s about $1/mo.

No ear plugs are needed when viewing videos on the internet. Just turn down the volume.

Ear plugs?

Red tape for a $40 ear mold?

March 10, 2008 at 2:31 am

The last time I had new ear molds made for me was 5 years ago and I don’t recall if medical insurance covers ear molds but I assume it was. It was a long time ago. BUt it’s certainly not $40 for ear molds! I believe they cost more. At least between $75 and $140. I will find out as the time is coming to get new ear molds anyway. I have to get re-acquainted with the audiologist’s office.

From the very beginning, DeafRead ASL vloggers was in DeafRead. Now we’re talking about ear molds right down to the wax build-up. Sigh. Colonization.

Karen Mayes

March 10, 2008 at 3:49 am

*Sigh*

Two months ago I had my earmolds made…costing $30 each.

March 10, 2008 at 8:01 am

At least the subject is hearing aid molds, not CI processors. How nice. I’d take the wax build up anytime.

mom2boys'

March 10, 2008 at 9:29 am

John,
Let’s not forget that these comments are about you and your excuse about earmolds. So how about we all forget about you and your earmolds and go on talking about those CI processors. I hope you are able to get your earmolds soon.

March 12, 2008 at 7:30 pm

“I’ll arrange for a hearing friend to listen Rachel’s and your speaking vlog.”

Hmm….maybe never? How long does it actually take to arrange a hearing friend to listen to Rachel’s video? Must be a complicated procedure to get that one done.

Jeremy

March 12, 2008 at 8:16 pm

mcconnell,

I don’t think he’s coming back after all! WOO! Let’s drink to that! WOO!

Darcy

June 5, 2008 at 9:16 am

story with deafness and hearing loss started at birth. I had one good ear and one bad ear and was not able to use a hearing aid. Two years ago I became very ill with a genetic disorder with constant symptoms of Meneire’s diease. This was taking over my life. I worked at a stressful job requiring me to talk for hours with the public in person and on the phone. Not only did I have the dizziness to deal with but my good hear began to die out. I was fitted with a hearing aid that did help for awhile. My office provided me with an amplified phone and other adjustmetents which helped for awhile. My doctor did discuss a cochlear for the future if my hearing became worse. After several months of no quality of life as I basically rested all the time in order to make it to work, I elected to have my damaged balance nerve cut in an attempt to help the dizziness. This was my good ear. The MRI done the morning of surgery revealed a brain tumor which had not shown up in the past. I elected to have it removed during the other surgery and I woke up deaf. I went from a hearing world to a deaf world in a matter of hours. I knew the risks of both surgeries but I chose a possible hearing loss for a possible cure. I could hear some sounds from my bad ear but no speech discrimination. The only sounds in my former good ear was very loud tinnitus. Within 2 weeks my doctor obtained insurance approval for an implant.
I was amazed at the things I began to read after my surery, especially about the “deaf culture.” I truly felt I was now a freak and with a CI I would not belong in the hearing or deaf world. I honestly was appalled at many of those (I do not say all and do not want to offend anyone) that were basically revealing predjudice to hearing people and especially CI people. Some very cruel things were written. CI people are portrayed terribly on television shows. My biggest question for these people saying the cruel things is do they wear glasses or do they embrace that loss with any help? Would anyone that is deaf consider laser eye surgery to not wear glasses anymore? A CI is just another device that may help improve one of your senses. If you had problems with your nose would you not fix it?? I have no problem with anyone not getting one or getting one. I have a problem with the discouragement and sometimes meaness of people about it. I just hate the way some of the deaf community at large seems to treat us late-term deaf people or those with a CI. What are people like us to do? This can have a far more challening impact on our lives as adults than if we were born deaf and knew nothing else. Jobs may be lost, we cannot instantly learn sign language and our family probably doesn’t know it either. It is an amazing thing that happens and one that would be nice to have some support in. When I take off my CI I am still deaf!!! I am now “one of you.” Yet we don’t seem to fit the criteria.
My job had to end because I could not do it any longer due to the deafness, but ufortuntately my dizziness did not get better and now I have very little balance left. I am also unable to drive.
When I first got my implant in January of this year it took awhile for me to accept it. I thought it would work better faster. However, I have decided to be happy with the positives of it and there are improvements as time goes on. I can communicate with most people through lipreading. I am not good with lipreading without it. I cannot understand speech unless face to face. I can hear cars when I am walking outside. I can now hear when I leave the water running. I hear my dogs bark but I don’t hear them bark and wake me up at napt time either! Nor does the phone disturb me. I am embracing the deafness and the hearing. My last visit with my ENT was after the implant surgery. He communicated with me by typing on the computer. Yesterday I had a conversation with him. It was wonderful No, it is not perfect and I still use closed caption and cannot use a phone or understand music, but there is always hope. And because of that hope I just had my other side implanted yesterday. Two eara are better than one so I do not have much to loose. I am blessed to have good insurance that covers most of it, otherwise I would not have an implant.
I might add I have also been taking sign language classes but my city is not large and there are very few options. There are hardly any resources to help newly deaf people and the one deaf club is pretty inclusive. I feel like such an outsider just because I was not born deaf, and now I have an implant AND I can’t sign yet. I feel it is important for me to learn to sign as when the implant is off I am still deaf and who knows what the future holds for it also.
I am also expecting my first grandchild this December. Yea! What a blessing to hear that precious baby. And I am lucky that I also will not have hear it if I don’t want too!!
This experience is positive for me. I feel like I am a success story. Sure I am still dizzy and now deaf but I am learning to communicate slowly with the deaf and hearing. Since not working while my income is less, my quality of life is now better so I can rest with this illness. I mourned my past active life for awhile and am over that. This is the new me and I am learning to live my life the best I can with what I have.
Sorry to write a novel. It is just my wish that others can be open and supportive and help everyone lead the best life they can.