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View Full Version : A deaf child rebels at wearing her cochlear implant




KramerDSP
04-22-2010, 07:58 PM
A deaf child rebels at wearing her cochlear implant. She received her first at age 14 months and the second one at age 5 1/2. She hates the second one. But the family court judge says she must wear it ALL the time....she is never allowed to be deaf except when bathing, swimming or wearing a helmet. OR her dad will go to jail and get his parental rights taken away

YouTube - Missoula moanings (http://www.youtube.com/watch?v=BJGccnmSjYQ)

angelatc
04-22-2010, 09:05 PM
What's the story here? Is family court involved because of a divorce?

Without knowing the child, she seems tired.

Captain Bryan
04-23-2010, 11:20 AM
I guess I'd wear a "helmet" at all times.

angelatc
04-23-2010, 11:33 AM
I guess I'd wear a "helmet" at all times.

I went to the YouTube page. The woman there is the child's grandmother. The child's father is that woman's son. He is deaf.

He is apparently divorced from his wife, and the wife insists (with the backing of the court) that the child wear the cochlear implant at all times.

My heart goes out - my son had to wear an eye patch for a little while, and I hated putting it on him. But at least I knew I was doing it for his own good, and not just because he was caught up in some mad Mom power play.

JeNNiF00F00
04-23-2010, 11:54 AM
This is quite common with the deaf and hearing impaired. Its a very controversial subject. It breaks my heart seeing this.

Reason
04-23-2010, 12:05 PM
YouTube - ZURFER: My Son Is Deaf, Finally! (Subtitled) (http://www.youtube.com/watch?v=-YN5Fdz1En0)

dannno
04-23-2010, 12:14 PM
My heart goes out - my son had to wear an eye patch for a little while, and I hated putting it on him. But at least I knew I was doing it for his own good, and not just because he was caught up in some mad Mom power play.

The eye patch was there to restore your son's natural vision again some day, and the decision not to wear it would be irrational. If he didn't wear it, his eye would likely be injured further and would later regret it.

The implant does not improve anything over time for this child except her current situation and her ability to hear. If she prefers not to hear, that should be her decision for the most part. Maybe when she gets older she will decide she wants to hear more and will wear it then. Or maybe she will never want to wear it. There are a lot of deaf people who have no desire to hear better, I've known at least one personally who told me about others who had the same feeling.

Now, if both parents wanted her to wear it because they wanted her to get used to it, it would be hard to argue they were doing anything wrong.. but it is pretty ridiculous to have a court order that she wear it.

furface
04-23-2010, 12:27 PM
There's a window of opportunity for children where language skills develop much easier. Missing that window is a problem. I would have been really pissed at my parents for not teaching me spoken English and just letting me do it on my own when I turned 18.

dannno
04-23-2010, 12:28 PM
YouTube - ZURFER: My Son Is Deaf, Finally! (Subtitled) (http://www.youtube.com/watch?v=-YN5Fdz1En0)

Wow, that was amazing!

Warning: If you watch the video, watch ALL of it!

JeNNiF00F00
04-23-2010, 12:35 PM
There's a window of opportunity for children where language skills develop much easier. Missing that window is a problem. I would have been really pissed at my parents for not teaching me spoken English and just letting me do it on my own when I turned 18.

You have a point, however is that all so bad? If you look at the other videos, the grandmother still signs for the child even with the CI in. I know my mother cannot pronounce some words correctly because she is hearing impaired. The hearing aides help to a point however it is very taxing on her to wear them at all times, because of other noises that they pick up. Go into a restaurant and its exhausting to her because every sound is being amplified. I would assume this is the case with the young girl. It is abuse pure and simple if she is uncomfortable wearing them. The judge is ignorant and is misusing his power of authority.

KramerDSP
04-23-2010, 12:38 PM
I am at work but will respond tonight. Angela, my keyboard broke last nigh so I could not thank you and the other poster for helping out with my request. Thanks!! And Danno, I agree about the video. It's very powerful and outraged many hearing people but it gives them an entirely different perspective on this issue. More to come later.

furface
04-23-2010, 12:43 PM
It is abuse pure and simple if she is uncomfortable wearing them.

I'm curious about this. A cochlear implant is not a hearing aid in the normal sense. They directly stimulate the nerve endings in the brain instead of merely amplifying sound. The girl would have no idea what normal sound feels like, so is she rebelling against the feeling of sound in general or is the sound the implants produce naturally uncomfortable? A perfectly quite world has certain advantages, I guess.

JeNNiF00F00
04-23-2010, 12:49 PM
I'm curious about this. A cochlear implant is not a hearing aid in the normal sense. They directly stimulate the nerve endings in the brain instead of merely amplifying sound. The girl would have no idea what normal sound feels like, so is she rebelling against the feeling of sound in general or is the sound the implants produce naturally uncomfortable? A perfectly quite world has certain advantages, I guess.

I know what it does. It can cause vibrations though that may be uncomfortable to the person wearing them, especially if the chip is not programmed correctly at the appropriate power level. Although its not the same as with other hearing aides, there is still a lot of programming involved in getting it right, just like with modern hearing aides and adjustments. Imagine having something like that implanted into your head and hearing something like crumbling paper thats 50 times louder than what it should be.

dean.engelhardt
04-23-2010, 12:52 PM
To bad we leave in a country where the states make the decision about our bodies.

What purpose is there for this girl to wear it during sleep?

Why can't the judge that placed this order be sent to jail?

What kind of mother would cause the suffering of here children as revenge to the ex? Oh wait, I know the answer to that last question first hand.

dannno
04-23-2010, 12:52 PM
Imagine having something like that implanted into your head and hearing something like crumbling paper thats 50 times louder than what it should be.

Or fingernails on a chalkboard :eek:


Or a Barbara Streisand and Neil Diamond duet :eek::eek::eek:

slothman
04-23-2010, 01:00 PM
I hate to be pessimistic but I doubt this has anything to do with a hearing aid.
It is more likely an anti-man law the judge is doing.

MelissaWV
04-23-2010, 01:08 PM
The question of whether or not this will help, and whether or not the help is wanted, should be one for doctors and parents. Unfortunately, it seems like they don't want to play nice, which is like a big, flashing, neon sign inviting Big Daddy Government to step in :(

angelatc
04-23-2010, 01:35 PM
The question of whether or not this will help, and whether or not the help is wanted, should be one for doctors and parents. Unfortunately, it seems like they don't want to play nice, which is like a big, flashing, neon sign inviting Big Daddy Government to step in :(

What's especially heartbreaking is that it is entirely possible that both sides of this could be argued as being best for the child.

KramerDSP
04-23-2010, 03:46 PM
First off, I appreciate the discussion and comments about this controversial topic within the Deaf community. Here are my thoughts, jumbled as they may be. Before I do so, I think anybody who is genuinely interested in this topic would really enjoy reading this article entitled: “Understanding Harry Potter: Parallels to the Deaf World” (http://jdsde.oxfordjournals.org/content/10/4/442.full?related-urls=yes&legid=deafed;10/4/442). I believe this article really helps to clarify things to hearing people about what deaf culture is and about typical life experiences that deaf people go through daily.

In the early 19th century, various reports suggest that Deaf people were pretty much the equals of hearing people in society. They had good jobs, raised families, and were part of the community. There was one place in particular, located within the island of Martha's Vineyard, that was described as a Deaf person's utopia (http://deafness.about.com/cs/featurearticles/a/marthasvineyard.htm).


Sign language was so accepted on the Vineyard that a newspaper marveled in 1895 at the way the spoken and signed languages were used so freely and easily by both deaf and hearing residents. People moving to Chilmark had to learn sign language in order to live in the community. Deafness was so common that some hearing residents actually thought it was a contagious disease. Deafness was never considered to be a handicap.

Then Alexander Graham Bell and the oralism movement came along. Hearing people generally view AGB as a hero, but to Deaf people, he's the equivalent of what Rudy Giuliani is to Ron Paul supporters. AGB and his people worked behind the scenes to push for the eradication of manual sign language, promoting oralism as the prevalent method of teaching deaf children. The Milan Conference in 1880 (http://deafness.about.com/cs/featurearticles/a/milan1880.htm) came close to pretty much extinguishing manual sign language as we know it. The quality of life of deaf people after that dropped dramatically, as many were mis-diagnosed as mentally retarded and left to rot in mental institutions (http://deafness.about.com/cs/featurearticles/a/retarded.htm), only to be discovered to be simply “deaf” years later.

Deaf people have been fighting throughout history to preserve manual sign language as their natural language against the proponents of oralism, and it is so frustrating to see that hearing people think they know what is best for deaf people and how to educate deaf people. Various styles, from the Rochester Method to Total Communciation, have not truly enriched the lives of deaf children, yet hearing people continue to think that they know best. Deaf people have pushed for bilingual/bimodal education, which is basically teaching concepts in sign language so that they "get it", showing them the print form of the concept in English, and then sandwiching the concept by repeating it in sign language again. This allows deaf kids to understand the concept and then see how it reads out in English. I am explaining it poorly, but the point I am trying to make is that most hearing administrators throughout the country continue to resist calls for a bimodal/bilingual approach to educating deaf children. Some deaf administrators of residential schools for the deaf have begun this push, however, with what appear to be amazing results thus far on the surface.

Cochlear Implants are basically a different kind of amplification device to assist those with hearing losses who do not benefit from the use of hearing aids. I want to emphasize that while there are some Deaf people who are militant about cochlear implants, the majority of us just want the parents of deaf children to have access to ALL of the information out there. Doctors, by the very nature of their profession, are in a fix-it mentality. Doctors are usually the first to inform parents of their child’s hearing loss, and their recommendations are almost always a referral to a Cochlear Implant specialist. All I want is for parents to meet with a specialist who has experience working with deaf children who can give parents ALL of the options available to them.

I work in a residential school for the deaf and hard-of-hearing, and I cannot tell you how many families I have met that have implanted their kids, thinking that it was a miracle solution and that the child’s hearing would be restored. It takes years of twice-weekly therapy sessions and frequent re-mapping of the implant to see success, and even then, these children will still have difficulties with 100% acquisition of verbal information spoken to them. It's true that the younger one is implaneted, the better chances for success, but it is also true that there is no magic button cure.

Because I work at a residential school, I am well aware that I never meet the successful CI kids, because they are able to succeed and thrive in hearing classrooms. I see the kids that were unable to succeed in a general education placement. More often than not, these children never got the appropriate therapy following the implant, and never benefited from it. So why were they implanted in the first place ? It feels like the CI companies lobby the medical associations to educate them about CI's and encourage insurance companies to pay for this, as if this was a huge business to profit from. Deaf people see this as hearing people making money off of this and profiting. It is an incredibly invasive procedure and until recently, a large amount of physical restrictions were in place, such as not being allowed to use metal slides, not being able to swim, or not being able to play football or other contact sports.

Also, as you can see in the video, some CI’s cause headaches and physical pain within the children. I have seen kids who have been implanted who appear to be very traumatized by the experience, and I have seen their parents refuse to learn manual sign language even when their kids’ CI’s have been shown to be unsuccessful. Of course, the Deaf world always accepts these CI kids. We do not reject them, ever. It bothers us that hearing people think they know what is best for deaf people, but when deaf people don’t meet their expectations in terms of conformity, they are shunned and cast off, while the Deaf world accepts those folks and welcomes them with open arms.

When I look at this issue, I see a judge that is clueless and borderline arrogant about issues pertaining to deaf children. Someone who is uneducated about this issue will almost immediately say “Of course the child needs to be implanted! If you don’t do this, you are a horrible parent”. But there are many in the Deaf world that feel that hearing parents who invasively implant their child without being willing to learn manual sign language are the ones engaging in language abuse. I have seen a kid who underwent not one, not two, not three, but FOUR cochlear implant surgeries, and his head has the scar wounds to show that. Four implants, costing tens of thousands of dollars, and for what ? To "fix" the kid and make him "normal"? What is truly normal ? The judge should not have a say in forcing amplification. Some of the smartest people I know are deaf and cannot use their voice, and their english abilities are better developed than mine. American Sign Language (ASL) is the natural language of all hearing-impaired children, and it bothers me very much that others think they know what is best for my community, when my community has suffered the effects of decisions made by those same hearing people over the last century.

I agree that all decisions should be made by the parent, but not only with just the doctor’s feedback. I strongly believe that a professional who is not biased towards either side is the person that should be meeting with parents to give them all the information and options available to them, not the Doctor with the fix-it mentality. What the judge did here borders on criminal, IMHO. I'm sure the judge's intentions may have been pure and good-natured, but it's still no excuse to force a child who is physically uncomfortable with the implant to continue to wear it at all times against her will. Isn't that what Ron Paul Forums is all about?

When I try to engage my more liberal and progressive deaf friends on the issues of limited government, I generally focus on this topic, as it is very controversial within the community. I ask them if they would be so gung-ho about the Health Care Reform bill that recently passed if they learned their taxpayer dollars would be going to funding Cochlear Implants. The answer I get is usually one of surprise. “Of course not!”.

Hearing parents have the right to implant their child, but all I ask is that they have all of the information at their disposal before making this critical, life-changing decision. A judge forcing the child to wear her implant at all times with the understanding that if she doesn't, her father goes to jail, is outrageous, however. Outrageous.

*Getting off my soapbox now*

KramerDSP
04-23-2010, 03:48 PM
What's especially heartbreaking is that it is entirely possible that both sides of this could be argued as being best for the child.

+1

I won't disagree with statement. But I will disagree with any process that doesn't involve the parents getting access to BOTH sides of the debate. 95% of deaf children are born to hearing parents, and hearing parents may not have ever met a deaf person in their entire lives. The doctor says "an implant is advised", and the parents think "well, the doctor must know best". Then the child deals with the consequences for the rest of his life.

As a wise man once said, the road to hell is paved with good intentions.

MelissaWV
04-23-2010, 03:58 PM
+1

I won't disagree with statement. But I will disagree with any process that doesn't involve the parents getting access to BOTH sides of the debate. 95% of deaf children are born to hearing parents, and hearing parents may not have ever met a deaf person in their entire lives. The doctor says "an implant is advised", and the parents think "well, the doctor must know best". Then the child deals with the consequences for the rest of his life.

As a wise man once said, the road to hell is paved with good intentions.

Yeah, but that really goes for any serious medical condition a child is born with. These things manifest themselves as little surprises within families, and usually there's almost nothing a parent can intuitively decide. It's left up to the doctors and a lot of hearsay. Thank goodness for the internet these days, at least, but then again a lot of parents will be driven to think of how they can make their child "normal" rather than really considering what best helps them get through life happy and fairly safe.

My boyfriend's mom, when I met her, surprised me. She still treats him like he's going to run into traffic for no good reason any second, and she opens doors for him (which is strange, because that's actually a horrible and disorienting thing to do to a blindguy). She looks embarrassed when he touches his food with his fingers or uses them to gauge the beverage level in a cup/glass. I don't think he's fully aware of just how freaked out she LOOKS at all these things he's doing, and I suspect she's always gotten away with it because she speaks normally while she has this horrified expression on her face. I have no doubt that if she could wave a magic wand and make him sighted, she would... not for his sake, because he's actually really damned happy... but for her own.

KramerDSP
04-23-2010, 04:14 PM
Yeah, but that really goes for any serious medical condition a child is born with. These things manifest themselves as little surprises within families, and usually there's almost nothing a parent can intuitively decide. It's left up to the doctors and a lot of hearsay. Thank goodness for the internet these days, at least, but then again a lot of parents will be driven to think of how they can make their child "normal" rather than really considering what best helps them get through life happy and fairly safe.

My boyfriend's mom, when I met her, surprised me. She still treats him like he's going to run into traffic for no good reason any second, and she opens doors for him (which is strange, because that's actually a horrible and disorienting thing to do to a blindguy). She looks embarrassed when he touches his food with his fingers or uses them to gauge the beverage level in a cup/glass. I don't think he's fully aware of just how freaked out she LOOKS at all these things he's doing, and I suspect she's always gotten away with it because she speaks normally while she has this horrified expression on her face. I have no doubt that if she could wave a magic wand and make him sighted, she would... not for his sake, because he's actually really damned happy... but for her own.

I couldn't agree more if I tried. If someone gave my parents, who are hearing, a pill that would make me hearing, they have told me they would not force it upon me becausen they know I LOVE being Deaf. Sure, there are obstacles, but everyone has obstacles anyway. There are also blind students in my school, and I love working with them. I agree that opening doors is disorientating for them, and that some parents just want to "make their child "normal" rather than really considering what best helps them get through life happy and fairly safe" as you stated very well.

KramerDSP
04-23-2010, 04:19 PM
Yeah, but that really goes for any serious medical condition a child is born with. These things manifest themselves as little surprises within families, and usually there's almost nothing a parent can intuitively decide. It's left up to the doctors and a lot of hearsay. Thank goodness for the internet these days, at least, but then again a lot of parents will be driven to think of how they can make their child "normal" rather than really considering what best helps them get through life happy and fairly safe.

My boyfriend's mom, when I met her, surprised me. She still treats him like he's going to run into traffic for no good reason any second, and she opens doors for him (which is strange, because that's actually a horrible and disorienting thing to do to a blindguy). She looks embarrassed when he touches his food with his fingers or uses them to gauge the beverage level in a cup/glass. I don't think he's fully aware of just how freaked out she LOOKS at all these things he's doing, and I suspect she's always gotten away with it because she speaks normally while she has this horrified expression on her face. I have no doubt that if she could wave a magic wand and make him sighted, she would... not for his sake, because he's actually really damned happy... but for her own.

What is your boyfriend's take on the ADA, and does it differ from yours? I am curious, because the more educated Deaf folks I know believe that the deaf are more of a linguistic minority that does not fall under the ADA's umbrella. They have also shared that they feel this has caused perceptions of them to be lower than what they can actually achieve in society because they are within the ADA umbrella.

MelissaWV
04-23-2010, 05:35 PM
What is your boyfriend's take on the ADA, and does it differ from yours? I am curious, because the more educated Deaf folks I know believe that the deaf are more of a linguistic minority that does not fall under the ADA's umbrella. They have also shared that they feel this has caused perceptions of them to be lower than what they can actually achieve in society because they are within the ADA umbrella.

Yeah, I've mentioned it before on a different thread, but he thinks it's a lot of hogwash. He's never had problems getting help on the rare occasion he needs it (like at the grocery store), and manages for himself very well otherwise. He's Canadian so he doesn't have to deal with the ADA, and I'm not sure if there's a Canadian equivalent. Sometimes he says something a little puzzling, but most of the "differences" arise from how he learns something new, and that's about it. He also gets a cushy job proofing Braille publications :p He thinks businesses should be free to be full of asshattery if they'd like.

We were wandering and went into one of those really narrow Toronto stores that sells oodles of kitchen supply surplus, and when I walked in with him the owner noticed the cane and asked (in all seriousness) if I could "handle" him, if I had him "under control." I responded something along the lines of "He's doing a fine job of handling himself, and he's helping me not trip over all these boxes you have everywhere." We didn't leave, but proceeded to stumble around the store and give the people there a heart attack. He knew where all the glass and such was, and would pick things up and pretend he was having trouble placing things back on the shelf. Serves them right for being dicks, but there shouldn't have been some Braille signs or some kind of requirement that the aisles be clear. We just didn't buy anything from them.

The entire *world* isn't very friendly to people deprived of a sense or two. Birds do not chirp in closed captioning, and a beautiful woman's smile will never translate fully to Braille. No amount of description will ever really equal the thrill of a good meal experienced with adequate taste/smell senses, and if you haven't got any nerves in a place the sight of a caress will never cause you to feel it. The best parts of life are reached by overcoming obstacles, and his point of view (and mine) is that sometimes having a really obvious obstacle makes life a bit better.

KramerDSP
04-23-2010, 06:02 PM
The entire *world* isn't very friendly to people deprived of a sense or two. Birds do not chirp in closed captioning, and a beautiful woman's smile will never translate fully to Braille. No amount of description will ever really equal the thrill of a good meal experienced with adequate taste/smell senses, and if you haven't got any nerves in a place the sight of a caress will never cause you to feel it. The best parts of life are reached by overcoming obstacles, and his point of view (and mine) is that sometimes having a really obvious obstacle makes life a bit better.

You definently have a way with words! Nicely written.

angelatc
04-24-2010, 02:30 PM
You definently have a way with words! Nicely written.

That was indeed.