Thursday, April 10, 2008

Blog Comments Reveal Misconceptions with Regard to Cochlear Implants


In a blog entitled, Jeff Daniels And Marlee Matlin Star In Sweet Nothing In My Ear, and 203 comments later, the misconceptions and prejudices regarding the cochlear implant reign. A mother-member of the Pediatric Cochlear Implant Circle brought the blog to the attention of our international community cochlear implant support group - see Naomi's reaction below some of the comments I have posted. I have chosen to copy comments representing such misconceptions regarding cis and the role of hearing parents in choosing implantation. Not all comments were derogatory, actually there were many open-minded responses, especially in regard to the film promoting awareness of choices in deafness. However, the angry, unsupported comments regarding cis were what specifically touched our support group.

As many already know, the movie's plot is as follows:
Laura and Dan Miller (Matlin, Daniels) have been happily married, as well as best friends, for many years, but their relationship begins to change when their only son, Adam (Noah Valencia), loses his hearing at the age of four. Laura, who is deaf herself, sees this occurrence as a minor problem, something that she has dealt with her whole life. Dan, on the other hand, at first agrees with her but starts to realize that, with surgery, his son could regain his hearing and live a more normal life.

Tempers flare and frustrations mount as Dan investigates the surgery and its pros and cons. Laura is dead set against it and makes that very clear, even as Dan begins to favor the procedure for his child. Locked in their own worlds, the couple must find a way to mend their differences and make the best decision for Adam's future.




wluvtojlc said:
CI seems a big word these days.. Especiallly for DRs who really believe they know what they re doing which is a big myth here.. Telling hearing parents of deaf kids that they wld benefit CI is a big lie. They know parents like what they want to hear. Hearing parents of deaf children is to do some research and not from words of a DR. AGB org. is no better today than what they first started.. in fact I think they are going backwards. For ur information I have known this from talking to kids who have had CI day they don't really hear much, not comfortable with it , they have gotten hurt when a ball hits that area where CI was put in and gotten migraine headaches after that. The child s head grows as he/she develops as they grow and usually their scalp feels some tightness, some nerves become switching feeling
switching..Parents please get information from other deaf people who have CI before deciding on ur child. Thanks Hallmaark for bringing this media to the world to know.. and be aware


Louisvillian said:
Am truly sorry about cochlear implants. I can not accept it because they would have a major peoblem and remove from this....Not worth !!! Warning !!! Doctors get an advantage of your money.God have a reason for any hearing problem, blind, or any general health probleml. When you are saviors at first, you will be happy to hear in a heaven. Joyful ! In a Severan Christ's name.....Amen !


Ricky Drake said:
As a standard, cochlear implants would be covered completely by insurance but not if removed by surgery. One would be better off with hearing aid because he or she can have absolute control over it with ease. In most or all cases, hearing aid won't be covered by insurance, unfortunately.

Anonymous said:
Parents with their advocacy for ci should wait until their children grow up and make their own decision or the parents will have to face the consequence from their grown-up children. The parents should not afford to lose love from them, too. I already heard more than enough of grievance from those cochlear implanted children against their will.
I am excited about that movie. I will spread the word to my family and friends and let them enjoy watching it, too.

Anonymous said:
I am against cochlear implants, The effects that causes in deaf people wearing ci after the surgeries, It is no miracle, The doctors don't care about the side effects and just want money, I am deaf myself and also have a deaf daughter, and deafness run on my side of father's family, None of us accept cochlear implants.


Ci Circle Reaction:


I haven't had a chance to read the comments but in all likelihood I would have
read something similar on some of the blogs I have been on of late.

To be fair I have met some really wonderful members of the deaf community who
are open to cochlear implants and genuinely want to hear about how our kids are
doing with their implants.

For some of those that write the kinds of posts you are speaking of, there is
a whole generation of people who as kids were forced to be raised orally at a
time when cochlear implants and hearing aid technology weren't what they are
today. Many wanted to sign and were forbidden. Imagine yourself that you can't
hear enough to work out what anyone is saying or learning a language you can't
access and you are trying to get an education at the same time. Many of them
went onto learn sign language and finally found a way to communicate. They are
very scarred and traumatised by their lives and the way they were treated and as
a result compare our kids to what they went through. Of course we know that for
our kids it is nothing like that, but they can't see past their own hurt and
pain to see that.

I'm not condoning the continual perpetuation of misinformation, it enrages me
in the way that it does all of you. However I do understand why some peole are
the way they are and that no amount of me telling them my child's experiences
will change their mind, they are just closed off to wanting to know what the
reality really is.

That is why the internet is so powerful for parents like us, we can blog about
our kids and their successes, we can put videos up for people to see and hear
our kids. It is this generation of kids that are really going to break the
stereotypes, and educate the wider community at large. They will do this because
they will live and work alongside their hearing work mates and apart from their
processors no-one will notice any difference.

It is also incumbent on us as individuals to continue to spread the word and
get accurate information about cochlear implants to parents of newly diagnosed
kids so that they might make informed choices. The brochure created here is sure
a great way to start.

So by all means continue to comment and respond but know that there are people
who you will never change their minds, and at times each of us has expended a
lot of energy trying to do just that when our energy can be used for a greater
good somewhere else.

regards,
Naomi

*nodding head in agreement*

41 comments:

Karen Mayes said...

Yeah, I understand. Speech therapy in 1970s is vastly different from 21st century's speech therapy. I have sat in my two children's speech therapy and I marvel at how much fun my kids were having and that they were looking greatly forward to their speech period, when they were attending Rochester School for the Deaf. My daughter was partnered with a CI deaf boy and both had a grand time, with the wonderful speech pathologist. (The CI boy is mainstreamed at a private co-ed school and from what his mom tells me, he is thriving there.)

Funny, because in a few hours I will be heading out to ISD for the IEP meeting to discuss the communication needs of my daughter (my daughter requested for more speech time, more auditory time.)

Hedy said...

Hey girl! I am deaf and my blood runs in a deaf family. I do not support CI however, I embrace CI kids as long as there is NO judgment.

I want to say something for a long time. I CANT stand a lot of people (hearing parents, DR, AGBell, top professors, etc) tells deaf community that once a deaf kid gets CI so he/she can be a normal. NORMAL??? Come on!! I am a normal productive citizen deaf person, am I?! Oh, I hate this word " not normal" labelled on the deaf kids!!!!
We have a LONG hostile with those organizations who TELL hearing parents of a deaf child to get a CI to be a normal kid. It it only to help kid to hear, that is all! You and I and others have one or two defective in birth. For example: birth mark labelled not normal. That is soo small flaw.

We have to EDUCATE those people that we ARE ALL normal and able to do anything on our own!!!!

Anonymous said...

Didn't you educate yourself about AG Bell? I noticed you have AG Bell in your blog list. Didn't you see Deaf Progressivism's blog about AG Bell?

Why didnt you also focus on how the description of the plot pointing out that getting a CI means leading a normal life? Oh so we all Deafies without CIs are not normal?

Some of the comments pointed out are not necessarily untrue. It does happen and do not invalidate their words for it because you haven't seen it. For your son to be successful with CI, great! But that doesn't mean it is successful for everyone.

Candy said...

Jodi, this is nothing new under our sun. It's not really a "misconception" but, rather a strong view of certain deaf people. No matter what you say, trying to clear or right a myth...misconception, you will still have the same people saying the same thing.

You can continue to try and dispell this misconception and hope you'll be able to enlighten a few if not all.

For example, you have one commenter going off about the word "normal".

Anyway, I'm looking forward to that movie.

K.L. said...

It is frustrating to see comments where someone says the CI doesn't work. They know someone that it didn't work for, so of course, it is totally bad and totally ineffective. Absolutely NOT TRUE. If it doesn't work for someone. Then it doesn't work for that person.

The implant is heavily dependent on the user's determination. For little ones, it is almost always successful. For older ones, they need to put in a lot of work to see hearing results. Many people don't realize how much effort is needed, and they get frustrated and give up.

But it is and must be accepted as hearing aids are accepted. Doctors don't make tons of money on these, and I have yet to meet a professional that isn't completely committed to helping my child. They are not selfish or only interested in getting rich.

Implants continue to get more popular, and will continue to be used by more people. Those who reject them are the ones who will need to deal with that.

Karen Mayes said...

I just got back...

Yup, k.l., people who are against CIs will eventually have to deal with it.

My children are 5th generation of deaf family, coming from the Middle East, and they are more accepting of CI and they enjoy talking/listening, etc. It is about exposing them to the diversity of deaf community and preparing them for the future.

mishkazena said...

Indeed, there is a lot of misconception about the cochlear implants by some Deaf people. On the other hand, many misconceptions about ASL and Deaf Community held by the parents of c.i. kids are also exhibited.

We have a long way in educating both groups.

Hedy said...

Karen,
my daughter is 7th generation of deaf family. So what! I am proud of my family. They went through good life no matter how hard they deal with audism in the past. We are doing fine and getting better. We totally accepted and understood. Yes, CI will be here to stay however, ASL is here to STAY forever! No difference if it is accepted or not.

KL, Remember the device is just like a car that can run good for 10 to 20 years, yeah right! Will we get some results?? I think NOT.
You think some CI people can be successfully..SURE. I am proud of them. Deaf people without CI CAN be successfully, too! There is no difference being compared.
The problem is we are warring with those organizations who gave the mislead information about ASL and Deaf community without CI. Really SAD!

Being normal to those audism people must have a CI. I'd die laughing.
my biggest issue with "not normal and normal"

I will vlog it very soon.

Karen Mayes said...

I am happy for you, Hedy. I have nothing against you and I am sorry that you felt threatened by my comment. You raise your family as the best way you see is right for yourself and for your family. All of us have right to raising our families.

As I say occasionally, when one's opinion does not mesh with another's opinion, the feathers would get ruffled.

:o)

Karen Mayes said...

I learned something new...

My daughter **DOES NOT NEED** any auditory training; she passed the word recognition tests pretty easily and has excellent listening skills. Nope, she does not have CI, but she LOVES wearing hearing aids. We agreed to see that the classroom have speakers attached to the computers so that she and other students with aptitute for listening could listen in, when they do computer work.

The audiologist and the speech pathologist said that compared to HEARING children of her age, her listening skills is just average which is very good. IF below average, they'd recommend auditory training. But she already mastered the understanding of phonics, being an excellent reader for a 1st grader.

So we agreed to let it go and have her to listen to music at home and at neighbors' places, chatting with her brother and the kids, etc. The ISD professionals said that she was a true bilingual deaf person.

Oh, it would be nice if ISD added more classes, such as Spanish and Latin...drat the state budget :o(

K.L. said...

HI Hedy,
I have never said you need a CI to be happy or successful. Just that it should be an accepted option. If it breaks, we have the choice to have it taken out and reimplanted. The internal part is covered for life.

But it is not fair to mislead new parents against implants any more than it is fair to mislead them in favor of the implants.

Candy said...

Hedy, many of these parents who decided C.I. for their child did a lot of research. Most have done their homework. Most are not under any intimidation by AGB nor were they forced by anyone to have their child implanted. Most, from what I've seen so far, do not consider their child "normal hearing"..most do acknowledge that their child is deaf, still. It's their choice. It's your choice to not have your child(ren) implanted. We just need to respect the parents that made that decision. You wouldn't like it if someone told you what to do with your child, would you? So...what is your goal? to undo something that's already done? How is it helping anyone?

Karen Mayes said...

Check this link out...

http://jimspoliticalthoughts.blogspot.com/2008/04/accepting-cultural-changes.html

I know the changes are not easy for ANY cultures.

Divided said...

Hedy,
It is wonderful that you come from 7th generation deaf family...I am 2nd generation deaf myself and I am hard of hearing. I do not have CI but wear a hearing aid. I encountered many other deaf people who would immediately give me a "dirty" look once they find out I could hear and speak for myself. I don't let that bother me and if they don't like it it's their problem...not mine. I happen to have the best of both world and my world is the deaf community. But there are many rude and ignorant deaf people out there just as there are hearing people.

Yes, it would bother me when people tell me that if I had CI I could hear normally. Those who say that are "ignorant" and I take the opportunity to let them know, in a nice & intelligent way, that I am as normal as anyone and I am happy with the hearing that I have and using my hearing aid.

There are many parents who decide to go with CI for their children and don't venture in the deaf community at all...that's perfectly fine. Then there are other parents who feel that they want their child to benefit the best of 2 worlds...using ASL and implanting CI on their children who could benefit more than a hearing aid would. That's their perogative and we respect that too.

It is important that we all tone down our objection and be more respectful and make correction when necessary, in a positive way.

Anonymous said...

Deaf children should make that choice because it is his/her body and it is his/her right. All Deaf children's cochlear implance option is here to stay. ASL is here to stay.

Jodi Cutler Del Dottore said...

I agree with what K.L. said, "But it is not fair to mislead new parents against implants any more than it is fair to mislead them in favor of the implants."
Nor do I appreciate scare tactics made by ignorant, uninformed people...not for myself, we've already made our decisions and are on the journey, but for those new parents who need transparent and accurate information from qualified professionals. And I do believe that these professionals should be versed and explicit regarding all communication options. Not all parents have the resources or know how to take care of the necessary resources to make such important decisions. This is the fundamental problem, not the communication method they eventually choose. Off to bed, y'all. Jodi

K.L. said...

Anonymous,
That is probably the biggest myth that needs to be addressed. If the child has a progressive loss, there are other options for verbal language acquisition. However, if the child has a profound loss, the way the brain learns, if you wait until they are old enough to decide, the brain is already past the point where it can make sense of the sound. One way or the other, it is the parents who decide, even if they don't want to. By waiting, they are deciding not to have a successful implantation.

Candy said...

But, Jodi, It ain't my bed time yet! lol

Anonymous said...

K.L

Predicting the Success of CI or Hearing Aid: In reality It is A Guesstimate

Transcribing
http://www.dcara.org/index.php?option=com_content&task=view&id=145&Itemid=1

Tales from the CI Gal said...

I got up this morning and put on my bilateral CIs and went out in the world. No one looked at me differently. No one yelled at me or tapped on me for my attention. Most importantly it was a normal day doing my normal thing.

I know the truth about Cochlear implants because I live with them. I will live with them for the rest of my life and you know what...thank you I enjoy each second.

The problem with myths they grow like fairy tales or fables. Myths tend to remain no matter how hard we try and debunk them. So the same merry-go-round keeps go round and round. My advice change what we can, tolerance others, accept others disagreements, and finally keep telling the world the truth. Someone will listen and someone will accept. The others let them live in the myth, I chose the light.

Good to have you back Jodi,
Valerie

Tales from the CI Gal said...

One more point, I agree it is unfair to mislead anyone for or against implants. That is why blogs like yours, mine, and the rest are important.

One common theme from CI users is that it is a personal choice. Many of use struggled with our choice for a long time. It is not a decision we took lightly. We have been there and ofter support not judgement.

Candy said...

anonymous, I saw that vlog by Di, and it was her perspective. Nothing to back up with. She made some statements that I disagreed with. There is a way to decide what will work as soon as you know how much hearing loss a child has.

Anonymous, just because it was Di's perspective doesn't mean it is the absolute.

Anonymous said...

"I encountered many other deaf people who would immediately give me a "dirty" look once they find out I could hear and speak for myself." Haven't you learn your LESSON? Do you have metal skull or what? "MANY OTHER DEAF PEOPLE" THAT'S LIE! NOT TRUE! LIE! Not true! LIE! Please stop spreading LIES about the deaf community. Every community, even hearing community has some bad apples.

The truth is that Many deaf people accept that a deaf person who can speak and hear well and this person has respect for ASL and the Deaf community. Maybe Divide looks down the deaf community like she did in her comment so that's why she is having a problem.

Karen Mayes has her own issues. Not many people in Indiana are comfortable with her. I live in Indiana. We embrace her children and at the same time, we feel sorry for them. We have friends with CI. They are also not comfortable with Karen.

Jodi and Tale of CI:

Did you realize your blogs really do advocate my belief of not supporting of CI?

Hedy, You are on wrong blog where all narrow-minded people only responded to this blog. Pay attention closely to the bloggers who they draw to. This place is creepy with people who need assurances from other people all the times.

Some deaf people had spoken and Jodi chose to close her eyes and stuck in fantasy. It's hard to get out middle of orgasm. ;o)

Anonymous said...

Are you saying that by having a CI is a guaranteed success? If not, then please provide us documents of failures. (device malfunctions, no recognition of sounds, cochlear did not pick up properly, misdiagnosis of best candidate for CI, etc.) Please be honest here..

Divided said...

Anonymous...

"Haven't you learn your LESSON? Do you have metal skull or what? "MANY OTHER DEAF PEOPLE" THAT'S LIE! NOT TRUE! LIE! Not true! LIE! Please stop spreading LIES about the deaf community. Every community, even hearing community has some bad apples."

Apparently you didn't read what I wrote and I'll write it again for you... I also said..."But there are many rude and ignorant deaf people out there just as there are hearing people." Sorry you find it hard to believe but yes, I have encountered snarky remarks from the deaf community...not much these days because I'm retired and don't encounter many young deaf generation like I did while I was working.

There are never any guarantees and parents need to be informed fully of the risks involved. While I do agree that it is best to do the implant while the child is young as they will adapt quicker to learning word recognition and sounds. My concern is this:

-child should also learn ASL as early as possible and if possible (provided parents has support and access to learning ASL)

-should the CI not be successful, parents need to be made aware about them and what happened and why. It's difficult but it has happened and we often don't know about the group that experienced continuous frustration and failures

Anyway...those would be my concerns should I have a child today that may be candidate for CI.
I would go with the hearing aid for few years and see how well the child benefits and let the child decide. But then I'm in a different position....I am part of the deaf community.

Candy said...

anonymous,

if you wish to remain anonymous, you shouldn't say bad things about people! FYI I know someone who lives in Indiana and I know that person thinks the Mayes are one of the BETTER intelligent deaf people which says a lot more than it does for you!

Paotie said...

Anonymous ..

Let's review your eruption:

You complained:

-- "MANY OTHER DEAF PEOPLE" THAT'S LIE! NOT TRUE! LIE! Not true! LIE! --

And then you said:

"Many deaf people .."

So, according to your own analysis, your points about Karen Mayes and "Many deaf people" is, as you said:

"THAT'S LIE! NOT TRUE! LIE! Not true! LIE!"


HaHa!

:o)

Paotie

Naomi said...

Anonymous, each company is required to report device malfunctions to the FDA. There are reports available online that give stats on failure rates.

Karen Mayes said...

Ahhh... anonymous, hiding and spreading lies about my family. I have friends in Indiana who DO NOT BASH anyone in Indiana nor outside of Indiana... Are you able to do that? It is a matter of respect.

By the way, I have NOT met any adults with CI here in Indiana, other than meeting the CI children at the summer camp in Camp Bedford, so your comment has *cough* holes.

Nice try.

dog food said...

its really too bad that most of these ignorant comments have terrible grammar. I understand the language difference; the point i'm making is that grammar gets much worse when one is pissed and writes without thinking.

I agree with your thinking. Resentment seems to be mostly from those who just didn't work with the old oral methods of yesteryear.

Anonymous said...

*lol* hehe Thank you all! You re superb! Everything what you have said is exactly what I have been saying all along. What If I really am good at English writing but I do not want anyone to identity me through my grammar? LOL... Have great day (without "a" before great is a big no-no.) heehaw heehaw heehaw heehaw

Tales from the CI Gal said...

You can't hid ignorance!

Paotie said...

Anonymous ..

Ain't you Horse Meat (dog food)?

You and dog food have the same M.O.

And dog food's blog is full of anonymous comments, like yours.

Gee .. what a coincidink.

:o)

Paotie

Jodi Cutler Del Dottore said...

Geeze, Can't a girl go to work in peace without coming home to sibling rivalry?? I have jetlag and I can not deal with unpeaceful demonstrations, I am a make love not war kind of girl.
Anonymous, you are entitled to your many opinions, especially regarding my blog, but don't be insulting my commenters...who I LOVE...("narrowminded" as they may be *smile*)Jodi

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