Lies about CI's

[GrendelQ]

It has struck me that maybe this isn't such a black and white issue after all. Maybe, instead of being all accusatory about CI's, people should realize that the CI isn't a cure all and that some people will have problems; and, someone else won't get the benefit from them that they hoped. There will also be people who will get the benefits they hoped for and MORE. It seems to me that it's very individualized.

It comes down to being realistic about this technology. People are trying to treat it as absolute and it's SO NOT.

"It is an absolute miracle."

"The CI will be the death of the Deaf community."

Neither of these extremes is true. So, there you go. There's a LIE about the CI.

I completely agree with you on the "pre-lies" part , plus, good "lies"!

 

[faire_jour]

Why don't you do the same for the deaf? Theres TONS more misinformation out there about the deaf... With your energy - I would expect to see a crusade out in the next state to me advocating the deaf as well? Why be so hellbent on CI's? Oh yes... Deaf people are inferior, eh?

you see -- my point is, even we as deaf people know that there is a shitload of misinformation out there about us - including that we need CI's to survive in this torrid world... We're pretty content on accepting that fact...

Didja know ... There ARE stupid people out there... They have this knack to bring you down to their level and beat you with experience. That is exactly what I'm seeing happening right here on this forum, its comical. Keep it up - argue with someone that will never get it.

I do! Fortunately, you are not actually part of my daily life, so you don't see it. I am out there fighting, working to make sure that parents are getting unbiased information, advocating for ASL, fighting to get appropriate educational programs, not just for my child, but for all.

Yeah, it looks like I am pro-CI, because I am. But there isn't misinformation being spread about ASL here, so how would I stand up against it? When parents come here asking about communication, I ALWAYS recommend ASL. I do the same on the parent's sites as well as in real life. Unfortunately there is a ton of misinformation here about CIs as well as listening and spoken language programs. So, here, I attempt to give correct information about that.

 

[jillio]

I do! Fortunately, you are not actually part of my daily life, so you don't see it. I am out there fighting, working to make sure that parents are getting unbiased information, advocating for ASL, fighting to get appropriate educational programs, not just for my child, but for all.

Yeah, it looks like I am pro-CI, because I am. But there isn't misinformation being spread about ASL here, so how would I stand up against it? When parents come here asking about communication, I ALWAYS recommend ASL. I do the same on the parent's sites as well as in real life. Unfortunately there is a ton of misinformation here about CIs as well as listening and spoken language programs. So, here, I attempt to give correct information about that.

There is plenty of misinformation regarding the deaf being spread, and you yourself are contributing to it. Shame that you can't see it. Advocates that don't even understand what they need to advocating for are worse than useless. They are dangerous. And that ain't no lie!

 

[Oceanbreeze]

Dang! I messed up! My son wanted an implant really really badly, and I refused to get him one. (How's that?:P)

Like I said, Jillio, I think a more appropriate thread would be "Realities of the CI", instead of such a inflammatory title such as this one.

As I've mentioned before, I don't like extremes; in anything. I cringe when I hear someone say "The CI will be the death of the Deaf community.", but I also cringe at the people who tout it as such a miracle for the deaf. The reality is that it will benefit some and not others. The reality is that there will always be Deaf people who won't benefit from the CI, so, neither assumption is true.

 

[posts from hell]

There is plenty of misinformation regarding the deaf being spread, and you yourself are contributing to it. Shame that you can't see it. Advocates that don't even understand what they need to advocating for are worse than useless. They are dangerous. And that ain't no lie!

exactly what i'm getting at..

 

[Oceanbreeze]

Why don't you do the same for the deaf? Theres TONS more misinformation out there about the deaf... With your energy - I would expect to see a crusade out in the next state to me advocating the deaf as well? Why be so hellbent on CI's? Oh yes... Deaf people are inferior, eh?

you see -- my point is, even we as deaf people know that there is a shitload of misinformation out there about us - including that we need CI's to survive in this torrid world... We're pretty content on accepting that fact...

Didja know ... There ARE stupid people out there... They have this knack to bring you down to their level and beat you with experience. That is exactly what I'm seeing happening right here on this forum, its comical. Keep it up - argue with someone that will never get it.

There is plenty of misinformation regarding the deaf being spread, and you yourself are contributing to it. Shame that you can't see it. Advocates that don't even understand what they need to advocating for are worse than useless. They are dangerous. And that ain't no lie!

, both of you.

 

[GrendelQ]

Why don't you do the same for the deaf? Theres TONS more misinformation out there about the deaf... With your energy - I would expect to see a crusade out in the next state to me advocating the deaf as well? Why be so hellbent on CI's? Oh yes... Deaf people are inferior, eh?

Hey! These little ones we're advocating for ARE deaf, you know, some Deaf. We're doing just that, advocating for educational opportunities and rights and options, just as many of you have done for yourselves, for your children. We're just including CIs in the mix of possibilities, not excluding all else and crusading just for CIs, not expecting that CIs or any other option is the one size that fits all.

you see -- my point is, even we as deaf people know that there is a shitload of misinformation out there about us - including that we need CI's to survive in this torrid world... We're pretty content on accepting that fact...

Yes, true. But I think we all agree on this! I consider many of the young deaf I've encountered online and off to be great role models for my daughter, some have CIs and HAs, some don't. The people whose choices frighten me are those who have grown up with or later adopted as adults one tool and a form of communication or another (for example, ASL without aids or CIs or CIs without ASL, etc.) and are now bitter, angry, and feel oppressed. When I see that happening, I become increasingly wary of whatever that choice is. I rarely see it among those with both spoken language via CIs and ASL together. I do see significant communication gaps and resentment among other combinations or approaches.

If my child's CIs stopped working tomorrow, it might be a shock, but I'd definitely not expect to see walls slamming down, doors closing, potential lost. I've been accused of being biased before on this not very scientific assessment , but she's brilliant and adorable today, she'd be brilliant and adorable tomorrow. Our approaches or activities might change, but not for the worse, just different. I can think of two big changes in our day to day: Instead of piano, percussion. And if the grandmas want to continue chatting with their granddaughter, they'll have to get their septuagenarian and octogenarian butts (and arthritic hands) in gear and learn more than the handful of ASL they know now (and one will need to finally learn how to use a computer and Skype with us!).

 

[GrendelQ]

When parents come here asking about communication, I ALWAYS recommend ASL. I do the same on the parent's sites as well as in real life. Unfortunately there is a ton of misinformation here about CIs as well as listening and spoken language programs. So, here, I attempt to give correct information about that.

I can vouch for that in other venues! It's ironic that many of you think that FJ is anything but a staunch supporter of ASL given her activism in forums where there's less familiarity with ASL.

 

[posts from hell]

I can vouch for that in other venues! It's ironic that many of you think that FJ is anything but a staunch supporter of ASL given her activism in forums where there's less familiarity with ASL.

I dont want to get into a debate with you at all..........

 

[BecLak]

Why don't you do the same for the deaf? Theres TONS more misinformation out there about the deaf... With your energy - I would expect to see a crusade out in the next state to me advocating the deaf as well? Why be so xxxxxxx on CI's? Oh yes... Deaf people are inferior, eh?

you see -- my point is, even we as deaf people know that there is a xxxxxx of misinformation out there about us - including that we need CI's to survive in this torrid world... We're pretty content on accepting that fact...

Didja know ... There ARE stupid people out there... They have this knack to bring you down to their level and beat you with experience. That is exactly what I'm seeing happening right here on this forum, its comical. Keep it up - argue with someone that will never get it.

 

[GrendelQ]

I dont want to get into a debate with you at all..........

Because my daughter is REALLY, REALLY cute when she signs and I might send you a video of her in tears, signing for you not to be cruel to her mom?

 

[posts from hell]

Because my daughter is REALLY, REALLY cute when she signs and I might send you a video of her in tears, signing for you not to be cruel to her mom?

More than that, ma'am.

 

[BecLak]

I do! Fortunately, you are not actually part of my daily life, so you don't see it. I am out there fighting, working to make sure that parents are getting unbiased information, advocating for ASL, fighting to get appropriate educational programs, not just for my child, but for all.

Yeah, it looks like I am pro-CI, because I am. But there isn't misinformation being spread about ASL here, so how would I stand up against it? When parents come here asking about communication, I ALWAYS recommend ASL. I do the same on the parent's sites as well as in real life. Unfortunately there is a ton of misinformation here about CIs as well as listening and spoken language programs. So, here, I attempt to give correct information about that.

Can you elaborate on why you are pro-CI? You say you want to dispell the lies.....

The general public, those of whom have not gone into extensive research are given the impression that CIs are a cure all. Of course, we all know that is a lie.

My question is: Because CIs are so iffy. Works for some, doesn't work for others. Why would anyone want to risk the intrusive surgery when besides the surgery being intrusive there are other risks as well???? (and if you can't remember - I don't believe in intrusive surgeries for non-life threatening conditions).

This is a genuine question.

 

[faire_jour]

Can you elaborate on why you are pro-CI? You say you want to dispell the lies.....

The general public, those of whom have not gone into extensive research are given the impression that CIs are a cure all. Of course, we all know that is a lie.

My question is: Because CIs are so iffy. Works for some, doesn't work for others. Why would anyone want to risk the intrusive surgery when besides the surgery being intrusive there are other risks as well???? (and if you can't remember - I don't believe in intrusive surgeries for non-life threatening conditions).

This is a genuine question.

I don't believe they are "iffy". It isn't about working for some and not for others, it is about levels of benefit. To me, if you hear more than you did with a hearing aid, that is success. If you hear the same with it off as on, that would be "no benefit".

I think that some people have inappropriate expectations, and that is what leads to misinformation about "not working", but in truth, all the information I have read says that they have a very small rate of non-use, much smaller than CIs. If you get the surgery and believe that you will suddenly become hearing, of course you will be disappointed. But if you go in with appropriate expectations for your individual case and circumstance, it is much less likely.

As for choosing the CI when it is not life threatening....I had to make the choice about whether or not I wanted to give my child access to spoken language. If I had not implanted her, it would have been impossible. I had to choose because she was too young to choose.

 

[naisho]

[ame=http://www.youtube.com/watch?v=k2W4-0qUdHY]YouTube - USA for Africa - We Are The World (w/M.Jackson) + Lyrics HQ[/ame]

 

[shel90]

Why don't you do the same for the deaf? Theres TONS more misinformation out there about the deaf... With your energy - I would expect to see a crusade out in the next state to me advocating the deaf as well? Why be so hellbent on CI's? Oh yes... Deaf people are inferior, eh?

you see -- my point is, even we as deaf people know that there is a shitload of misinformation out there about us - including that we need CI's to survive in this torrid world... We're pretty content on accepting that fact...

Didja know ... There ARE stupid people out there... They have this knack to bring you down to their level and beat you with experience. That is exactly what I'm seeing happening right here on this forum, its comical. Keep it up - argue with someone that will never get it.

That is what I have been trying to tell her and the other oralists..that they dont seem to show empathy towards the deaf people who werent successful with the methods they believe in. All I got were excuses ..well, since general society wont give us a lot of support, we have to fight for it but only to get told that we are anti-CI.

 

[BecLak]

I don't believe they are "iffy". It isn't about working for some and not for others, it is about levels of benefit. To me, if you hear more than you did with a hearing aid, that is success. If you hear the same with it off as on, that would be "no benefit".

I think that some people have inappropriate expectations, and that is what leads to misinformation about "not working", but in truth, all the information I have read says that they have a very small rate of non-use, much smaller than CIs. If you get the surgery and believe that you will suddenly become hearing, of course you will be disappointed. But if you go in with appropriate expectations for your individual case and circumstance, it is much less likely.

As for choosing the CI when it is not life threatening....I had to make the choice about whether or not I wanted to give my child access to spoken language. If I had not implanted her, it would have been impossible. I had to choose because she was too young to choose.

As one who did not have access to CIs and was oral only....I learned to speak and have a good grasp of language. You already have ASL in play, so getting the CIs?.....was it simply to have her hear? I mean you are still having to have various therapies etc, and as we all know, CIs cannot give perfect hearing. Was it just a matter of trying everything available out there? Or was it purely that because you are hearing, you wanted your daughter to experience hearing? These are genuine questions FJ, I am not debating you here. I know my hearing parents are like that. They can't understand why I am just comfortable the way I am without being hearing, though they respect my decision.

 

[faire_jour]

As one who did not have access to CIs and was oral only....I learned to speak and have a good grasp of language. You already have ASL in play, so getting the CIs?.....was it simply to have her hear? I mean you are still having to have various therapies etc, and as we all know, CIs cannot give perfect hearing. Was it just a matter of trying everything available out there? Or was it purely that because you are hearing, you wanted your daughter to experience hearing? These are genuine questions FJ, I am not debating you here. I know my hearing parents are like that. They can't understand why I am just comfortable the way I am without being hearing, though they respect my decision.

I have a very different story than most parents, so my answers will be different. But I am very willing to share.

My daughter was born hearing. She began to lose her hearing because of a doctor's mistake. She was fitted with hearing aids and got sound awareness but no speech access at all. We signed with her because we wanted to provide everything for her.

At age 5, she lost more hearing. She began to ask why her hearing aids were not working like they were before. She would hold up toys that made noise to her ears, press them, and then sign "broken", assuming that the toy wasn't making a sound. We gave her a CI because she had heard in the past and lost it. It wasn't that she had never experienced it, she had.

 

[faire_jour]

As one who did not have access to CIs and was oral only....I learned to speak and have a good grasp of language. You already have ASL in play, so getting the CIs?.....was it simply to have her hear? I mean you are still having to have various therapies etc, and as we all know, CIs cannot give perfect hearing. Was it just a matter of trying everything available out there? Or was it purely that because you are hearing, you wanted your daughter to experience hearing? These are genuine questions FJ, I am not debating you here. I know my hearing parents are like that. They can't understand why I am just comfortable the way I am without being hearing, though they respect my decision.

Also, I would have never allowed my child to be in an oral enviroment with her hearing aids. It would have been cruel. She could not understand spoken language and would have simply been guessing. Now, she understands running, complex speech just through listening.

 

[rockdrummer]

Ci's make you