Saturday, September 26, 2009

Sick to my Stomach

I really struggled with cross-posting this video. It's been going around on several hearing loss list-servs this week, and I know many of my D/HOH friends and CI Mommas have seen it. This blog is intended to be used as a resource for parents and also as a celebration of the miracle of the Cochlear Implant. I try to include information that is helpful for other families going through their own hearing loss and Cochlear Implant journey. I love sharing our milestones with Christian and also sharing our challenges.

I'm not even going to get into the debate of to implant or not, however this video profoundly impacted me. I felt sick to my stomach watching it. I sobbed. I wept. And all the while, I somehow understood this man's perspective. Unfortunately, hearing parents of deaf babies are misrepresented in the most grotesque way. I have been told in the past by radical members of the Deaf community (a community which I have found in the most part very welcoming) that we were "raping" or son and that we would "go to hell" for implanting him. I've been told that I "stole his identity" and that I am a "horrible parent". All that for giving my child the ability to listen and speak. My son's Cochlear Implant does NOT make him hearing. It helps him listen and speak. My son will ALWAYS be deaf.

I've learned in the past year or so after forming many friendships with deaf adults who use Cochlear Implants that there are members of the Deaf Community who are terrified of LOSING the next generation all together thanks to Cochlear Implants. My son IS the new Deaf generation. He listens. He speaks. He sometimes even signs. And some people are terrified of him and the 1,000s of other children growing up with the miracle of the Cochlear Implant.

Take this video for what it's worth, and watch it to the very end.
*And, yes, I still moderate my comments, so if you want to spread hate, do it somewhere else. The last thing new parents of deaf babies need to be exposed to is the hatred and negativity of the very few radicals who lurk on these blogs.

18 comments:

Lucas'Mommy said...

The video made me very sick too. As much as I get his perspective, it's still a totally different ball game in my opinion - taking away hearing versus giving it back. The video did make me think though.

misskri said...

Wow ~ I am sitting here physically sick to my stomach. I guess I will never understand how some people feel ~ the cochlear implant allows our children to hear and that is AMAZING. But when the processsors come off they are deaf ~ they will always be deaf ~ nothing can change that.
I could go on and on...I'll stop!

Mom to Toes said...

Definitely a powerful message and he delivered it well.

If only it were that simple.

An implanted child can learn to speak and sign. If at 18 the child decides to be Deaf, he can stop wearing the processors and move on.

If a child is not implanted he will learn to sign, but likely won't learn to speak. If at 18 he chooses to be implanted, he's lost 17 years of critical development and he will likely never get full use of an implant.

And that is just one argument.

If only it were that simple.

Lauren said...

I think one word sums up this video...ignorant. The CI debate has taken on the tone of the abortion debate and that is a real tragedy. No one should have to defend their decision...in either situation...the choice is hard enough to make. People like this give the Deaf community a bad name.

superears4evan said...

Wow! I had tears running down my face! Yes, sick to my stomach too. Well, I commend you for posting the other sides views. I agree with you totally that our kiddos are the next listening and speaking deaf generation. That has been very important when sharing Evan's story...he will always be deaf. He will however be able to listen and speak through the miracle of his CI! I am so thankful for blogging CI mommies! I love following everyone's blogs and hope to meet some you someday and get the "next generation" together!

Lily's Mom said...

I thought during most of the video that he was trying to make a point to parents who choose to offer their children the gift of hearing through cochlear implants. Toward the end, when he showed the photos I got really upset and thought this was something he and his wife really chose to do. I don't think it is the same at all. Our children will always be deaf and when they are older they can choose not to hear if they want. Once Lily is school age and speaking well, I want our family to learn more sign language so that ASL can be her second language. I want Lily to learn both languages so that she can make her own decisions when it comes to communicating. Thanks for sharing.

Prince Andrew and the Queen Mum said...

i Tina
Thanks for posting. I saw it elsewhere..on my FB actually. it was posted by a deaf mom. I actually couln't watch it after the first few seconds. however I too 'understood' his perspective. as Christians we must not judge. God has been hitting me big on that one. Thankful that I live in a free country where i can make that decision. I think those that spew hate actually deserve our prayers.

Anyway- i agree 100% w/ your post. i 'get' this person all the while being sad.

i hope you don't mind if i post a link to your blog on my FB? i didn't want to post the original video but i like your commentary.

AL said...

See response from aslci to this:

http://aslci.blogspot.com/2009/09/anti-ci-vlogmovie.html

I'm glad you brought up the fact that not everyone in the deaf community shares the same opinion about cochlear implants.

Laurie said...

Oh...My....Goodness!!!!

How disappointing and discouraging! The deaf culture will still be needed...cochlear implants or hearing aids may not work for every child or situation and it should be looked at on a case by case basis.

In fact, 80% of deaf children are born to HEARING parents. I got suspicious halfway through the video because there was no wife and no child...but I was also thinking that if this were really true how sad it would be for these parents to make their child deaf...taking away any "gifts" he may have in music or any chance that he could be their "ears" for them.

Enough said...this would be a great topic for a philosophy class.

I also understand that we all have the right to free speech but this video should be taken off YouTube...just my opinion.

And, don't ever DOUBT yourself about the choices you made for Christian....you made the right decision for him and are still working with him with his speech and hearing on a regular basis.

David said...

When I first saw this video, it seemed to me that it was more about exposing hypocrisy, and there is a great deal of that.

One of the stridently pro-CI bloggers who is compensated by one of the implant makers (AB, IIRC) always pushes the idea that "It's the *parents'* decision!” However, hypotheticals such as this video expose the real meaning. The real meaning is that it is the parents' decision as long as they make a decision that the blogger agrees with.

Let me ask a question or two to help you evaluate your own level of hypocrisy. Do you think this fictitious Deaf couple should be allowed to do as the video says? If you think couples like the couple in the video should have some kind of oversight, then do you think that hearing parents, such as you, should have the same kind of oversight? (Before you say that the oversight already exists - it does not. The evaluations that exist are done by those who profit from the implant process and who might have an incentive to try to insure a steady stream of new and repeat customers.)

When you talk and think about the ways your child will be "limited" without the implant, are you not talking about the biases of the majority of society? Many, even most, of the "limitations that deaf children will face" that I see named are the same "limitations" that black/African-American people faced 50 years ago. Some chose to alter themselves to better fit the biases of white society (call this the "Michael Jackson Approach"), but others worked to change biases and prejudices. I think our society is better for the change. If the work had never been done, then our current president would never have been elected.

I really encourage Deaf people, parents of deaf children, and all who are close to us to work to change the attitudes that view us as requiring "fixing". This will bring benefits not only to Deaf, but also to a much larger part of American society, just as an earlier Civil Rights effort has done.


David

Christian and Lily's Mommy said...

Glad to see I wasn't the only one deeply disturbed by this video. While I understand his perspective, it is still fueled by a profound level of ignorance and understanding of exactly what a CI can accomplish, why parents choose to implant early, and how our children still fit into "Deaf Culture"

David, I appreciate you taking the time to comment on my blog, however I don't think I follow much of what your saying and much of it takes on a conspiratory tone. I think the core difference that we have is that I view my son's deafness as a disability. I view his deafness the same way as I view his race, religion and gender. It is a part of who he is, but it does not DEFINE who he is. If he was born blind, I would do the best I could do to help him see. If he was born with limbs that didn't work, I would get him the best wheelchair and walkers that I could. He was born deaf, so I chose to amplify him with both a Cochlear Implant and a hearing aid to help him hear. Just as I wouldn't wait until my son was 18 to help him see or walk, I made the decision to help him hear. That's my job as HIS PARENT. If Christian decides when he is 18 that he doesn't want to use his amplification, then he is free to take it off and do what he wants.

I'm not following your rationale comparing my son's Cochlear Implant and race and the civil rights movement. My son's CI is a medical device which helps him listen and speak. However, when you look at his genetic make-up, he will always carry the gene that makes him deaf. When you take his amplification off, he can't hear. He will always be deaf, regardless of the amplification he wears. I wonder, do you compare folks who wear hearing aids in the same way?

Lastly, regarding oversight of parents who wish to implant their children, obviously you have never been through the candidacy process. Do you really think parents make this decision based on what WEBSITES and BLOGGERS tell them to? I can tell you have never been in my shoes, and you are very out of touch. We can't just walk into a clinic and slap a CI on them. The hours and hours of appointments, evaluations, and psychological testing that we had to go through was more than enough oversight. I've known many families who were denied based on levels of hearing loss and committment to the process. And your suggestion of the industry being motivated by profit and new implantees is just ridiculous. With that type of reasoning, we could also say the same thing about every other groundbreaking medical procedure, such as pacemakers.

I'm not saying that my choice is the right choice for all families, but it certainly was for mine.

David said...

Christian and Lily's Mommy,

We are working from two different perspectives. Within Deaf culture, being Deaf is a cultural issue, not a *medical* issue. Your comparisons to medical issues do not resonate. Further, in a different majority culture, being deaf is not a "handicap" at all (cf Martha's Vineyard, ~1600-1900).

In comparing the current struggle between the Deaf community and majority Hearing culture with the Civil Rights movement, I am talking about how barriers have been created that are entirely unnecessary. In the past, "medical" explanations were trotted out to explain why women, African-Americans, Asians, and so on, could not fully participate in American society. In some cases, these explanations had some kernel of scientific truth. However, the correct way to address the barriers raised by American society was not to alter the minorities, but to work to remove the unnecessary barriers to full participation. That is what I am advocating now. As an example, even at present, there are many jobs, including technical and professional, in which listening and speaking (as you put it) are not necessary, yet that requirement persists as an unnecessary barrier. To emphasize, the proper path is to work to remove barriers.

Now regarding oversight - actually I have a great deal of experience. The evaluations, appointments, and testing you refer to are "process controls" which are there for the purpose of assuring the surgeon and the hospital or clinic that they get a good "work product". The only oversight of the type I am talking about has come from insurance companies refusing or limiting payment.

Let me see if I can ask the question another way. Your blog posting implies that you think that there should be some way to stop parents like the fictitious couple in the video. Is that the case? If that is true, then do you think there should be someone with the power to stop you from implanting your child?

Your posting and some of the comments sound like a double standard. In America, double standards are assumed to be wrong.

I have tried to word this to avoid giving offense, though I am not sure I have succeeded. As I said at the start, there is a very deep, fundamental difference in perspective. I have met only a few Hearing parents of young deaf children who have made the effort to understand the Deaf perspective, whether they agree or not.


David

David said...

Christian and Lily's Mommy,

I have broken this into two comments to try to avoid confusion.

It is not so much a matter of motivation by profit as a matter of tunnel vision. You may know the old saying "To the man with a hammer, everything looks like a nail." It is actually very common for "shiny-new" technology to be greeted with overwhelming enthusiasm and therefore to be overused and misapplied. You can check the history of X-rays and coronary artery grafting (CABG) as two examples. And, yes, even pacemakers were overused and misapplied when that was "shiny-new" technology. It is pretty much the rule that enthusiasm for new technology ends up having to be reined in.

I see every indication that CI technology is still in this "shiny-new" phase. Unfortunately for the present discussion, it may take 5 to 20 years to know if I am right or wrong.


David

Sam said...

That video definitely did a number on me. Doing what he said is like cutting off someone's limb, taking out an eye, cutting out one lung just "because". As parents, we have a responsibility to our children; to provide them with the best life has to offer.
For him to use an analogy that is the total opposite of the benefit CI's offer is a down-right low blow.
Maybe we should suggest he cut his hands off so that he won't be able to use the language of the Deaf culture and then we'll see how he feels.

Laurie said...

One more thing....a cochlear implant surgery is not a money making process for doctors....in fact, they barely make enough to cover the cost of surgery...they make their money on the follow up appointments with the audiologist...that is, if their audiologist is in the same clinic as their office. CI doctors do the surgery and the whole nine yards because they only want the best for their patients, just like parents want the best for their child.

John Burdett said...

David...a consistent application of critical theory to the economic and sociological elements of this issue. Obviously you are educated in these ideas (Marx, Durkheim, etc).
Your education functions as my son's implant functions. This knowledge empowers you to communicate with those who walk in those circles . Your education is a tool to interpret the input you perceive from multiple sources. My son's implant enables him to interpret input he perceives from cultures of people.
If profit is bad you probably ought to stop commenting on blogs because your internet provider is making a profit, you're computer manufacturer. If we follow this logic, who's profit is acceptable? Al Gore's, George Bush's, yours, mine, the governments? Who judges that? We need to remember that economics main thrust is not to oppress but rather for me to provide a service that you find valuable in which you compensate me for.

Even if we take away labels(biases) as you propose we still believe some "things" are better than others...life is better than death, I choose relationship over loneliness, we make value judgments every moment of our lives which can be interpreted as devaluing what we chose not to value- it's not better or worse it just is. Black is not better than white and vice versa- it just is. In this instance I valued my sons chance to interact with sound enough to find someone who could provide a service that I value.

You should also be careful in your assertion of profit(as if that is bad) made by bloggers from companies unless you have direct evidence.

By the way, your altruistic tone of assisting my supposed hypocrisy (which is heavily evident in critical theory ... why academia has moved on from it as a reliable knowledge generator) is not really appreciated.

Sometimes things just are...not a diabolical profit creating scheme by folks who are biased against marginalized groups of all kinds. Of course they aren't as interesting to read when situations are at face value. Sorry.

Jade said...

This video... I cannot find words... I was just sitting and thinking - "This cannot be. They're deliberately harming their own child. This is abuse. No one can do this to another human being, no way."

I am a complete outsider to deafness in every way, I have no relatives, friends or even aquaintances who are deaf. There are a couple CI blogs I'm frequently reading, as I find their journey very interesting and touching, even miraculous how these little people are thriving and communicating. I tried hard to understand what this video tries to imply, that by implanting deaf children, parents are "taking away their deafness". But it's simply not the same as taking away hearing.

If a child is implanted, he can possibly learn to speak, which is one additional way to communicate, one more channel to the world. Can he still learn to sign? Sure he can. Can he still learn to lip read? I think he can. He still has all the possibilities, even to decide not to wear the CI or aid any more, once he is old enough to make a decision about that.

However, if he is not implanted early enough, then the train is gone, and even if he wanted to get the implant when he is old enough, he'll not benefit from it as much as he would have.

This might be a stupid analogy, but I think of ASL and even speaking for a deaf child is like a foreign language. Actually like living in a foreign country and learning its language. I am Hungarian, but I spent a year in the US and learnt to speak English. Am I "less Hungarian" because I speak English? I don't think so. Just as a deaf child won't be "less deaf" by learning to speak. Am I still proud of Hungarian culture and being part of it? I sure do. So is a deaf child with a CI of deaf culture.

The CI is one option for communicating with others, ASL is another. It does not hurt to have them both and when a child grows up, he will have the possibility to decide...

Wendy (Mom to Toes) said...

Sam said..

"Maybe we should suggest he cut his hands off so that he won't be able to use the language of the Deaf culture and then we'll see how he feels."

Good point.

The video-blogger is insinuating we are taking our children's deafness away from them by implanting. That we are taking away their language.

Deafening a hearing child is not the oppositional position to implanting a deaf child.

Even removing the argument of whether Deafness is considered a disability, there is still no hypocrisy.

Now, if we were chopping our children's hands off, there might be some validity to that logic.