Hearing people's view of CI

[Banjo]

Caroline is exactly right. I'm not saying that all hearing parents who choose CI for their children are misinformed. However, I'm saying that too many are, and it's a problem.

Definitely.

 

[deafdyke]

Definitely.

And back in the old days when HAs were introduced, you prolly saw the exact same thing...........and I have a feeling if Alldeaf had been around back when Clarke was booming, you would have had a lot of ricks coming here and posting that we were bashing them and being anti oral and all that.

 

[Banjo]

And back in the old days when HAs were introduced, you prolly saw the exact same thing...........and I have a feeling if Alldeaf had been around back when Clarke was booming, you would have had a lot of ricks coming here and posting that we were bashing them and being anti oral and all that.

No doubt.

 

[GrendelQ]

I am hearing, but have a high interest in ASL and deaf culture due to the fact that I have a cousin who is deaf, and because I have a love for learning languages in general. I have found that many hearing people have misinformation about the CI. When I tell them that it doesn't actually restore hearing, they look at me like I have 10 heads. When I tell them that it is not the same as the way we hear, again I get the look. Many people refer to CI as a "miracle". While it is great for someone who makes the choice to get implanted, it doesn't make you hearing--you are still deaf. Many hearing people don't understand this and it frustrates me. Also, I had someone tell me that if deaf people choose not to get CI they are choosing not to engage with the world and isolating themselves...because, of course the only way to engage with the world is through speech and hearing *eye roll*

Hi Stephanie, I also find that most people -- both deaf and hearing -- are unfamiliar with CIs and how they work, what they really do. Even within the medical establishment and among Deaf friends we often find that people like to take a close look and ask basic questions about them that surprise me. We've encountered Deaf friends who thought there would be an open hole in her head, like a socket, and expected that baths were out of the question, and we've had hearing friends who thought that once implanted, the CI was always "on" regardless of whether the processors were near, and asked how she was able to sleep if it was always 'broadcasting'.

But I would never be angry at (or mock someone) for not knowing -- it's a complex device and process and so few people have one. There are a whole lot of medical devices out there that I haven't the faintest idea about. I'm sure there are many Hearing and Deaf parents who get to the early stage of considering a CI for their children, and don't yet know what a CI can and can't do. And many close friends and relatives, too (I never really understood the details of what my own father's HAs could or couldn't provide or exactly how they worked until my daughter was diagnosed and we tried HAs). But I've never met a person who continues on and has undergone the long process of researching CIs, establishing the candidacy and approval required for surgery (either for himself or for his child), and who has gotten to the critical point of giving the OK for surgery without understanding the device and how it provides access to sound. Maybe you are attributing lack of knowledge in the general public to parents at the point of making the decision or encountering families in the very early stages, well before they have made any binding decisions, before they have truly explored the option of a CI. And those who tell you either that that opting for a CI is rejecting ASL and being Deaf or that opting for ASL is isolating them from the hearing world are misinformed -- these (CI's and ASL) aren't mutually exclusive, not an either / or situation.

My daughter has two CIs, and we encounter people all the time who ask where we got "her cool hair clips" because she doesn't wear them anywhere near her ears, which throws everyone off, deaf and hearing alike. I don't mind if people refer to them or her fluency in spoken languages as a "miracle" or say it's made her life 'better' -- it can seem that way to many. Just as I don't mind when people are thrilled by my daughter's fluency in ASL and refer to it as a language that has saved their lives or made their lives 'better' and will do the same for her-- it can seem that way for many, as well. We value both modalities very highly and see her ability to use either or both as a gift, they each make her life better. The ability to communicate fluently is a wonderful and necessary thing, regardless of the mode in which it's accomplished, spoken, manual, or written.

 

[messymama]

One parent of CI kid I met, when I asked if they were doing SL, told me "No, he doesn't need it since now he's like any other hearing child" :roll:

So, Grandel, yes, there are also parents who go through the CI route and still has no clue.

 

[flip]

Hi Stephanie, I also find that most people -- both deaf and hearing -- are unfamiliar with CIs and how they work, what they really do. Even within the medical establishment and among Deaf friends we often find that people like to take a close look and ask basic questions about them that surprise me. We've encountered Deaf friends who thought there would be an open hole in her head, like a socket, and expected that baths were out of the question, and we've had hearing friends who thought that once implanted, the CI was always "on" regardless of whether the processors were near, and asked how she was able to sleep if it was always 'broadcasting'.

But I would never be angry at (or mock someone) for not knowing -- it's a complex device and process and so few people have one. There are a whole lot of medical devices out there that I haven't the faintest idea about. I'm sure there are many Hearing and Deaf parents who get to the early stage of considering a CI for their children, and don't yet know what a CI can and can't do. And many close friends and relatives, too (I never really understood the details of what my own father's HAs could or couldn't provide or exactly how they worked until my daughter was diagnosed and we tried HAs). But I've never met a person who continues on and has undergone the long process of researching CIs, establishing the candidacy and approval required for surgery (either for himself or for his child), and who has gotten to the critical point of giving the OK for surgery without understanding the device and how it provides access to sound. Maybe you are attributing lack of knowledge in the general public to parents at the point of making the decision or encountering families in the very early stages, well before they have made any binding decisions, before they have truly explored the option of a CI. And those who tell you either that that opting for a CI is rejecting ASL and being Deaf or that opting for ASL is isolating them from the hearing world are misinformed -- these (CI's and ASL) aren't mutually exclusive, not an either / or situation.

My daughter has two CIs, and we encounter people all the time who ask where we got "her cool hair clips" because she doesn't wear them anywhere near her ears, which throws everyone off, deaf and hearing alike. I don't mind if people refer to them or her fluency in spoken languages as a "miracle" or say it's made her life 'better' -- it can seem that way to many. Just as I don't mind when people are thrilled by my daughter's fluency in ASL and refer to it as a language that has saved their lives or made their lives 'better' and will do the same for her-- it can seem that way for many, as well. We value both modalities very highly and see her ability to use either or both as a gift, they each make her life better. The ability to communicate fluently is a wonderful and necessary thing, regardless of the mode in which it's accomplished, spoken, manual, or written.

The deaf community have allways been spot on with CI. Telling us that most deaf people don't know what CI is a grave insult and audists. I have friends and relatives with CI, and I still oppose it as necessary in many cases. As a professonial, I met houndreds of parents each year, and know for sure you are wrong when you try to make it sound as straighforward as you do. The process of deciding on CI vary from parent to parent, and asking the right questions will reveal a lot of uncertainity about the decision, even after the decision is made, CI or not.

Your "Informed choices" have it's orgin in medical thinking, and lacks input from sociology, linquistics and psychology. Parents are under pressure popular science with their focus on miracle medicines, the thrust genereal population have in medicine as a safety net and lack of understanding from the surroundings on deafness. But none of this are of interest for you, and it says a lot.

 

[Grummer]

Grummmer, what the hell are you talking about? Yes, a CI provides SOME access to the hearing world. I'm not being all AG Bell about the CI for crying out loud.All a CI is, is a TOOL. It's not good, it's not bad. If you do oral only with CI with the thinking that it will provide unfettered access to the hearing world, yes it's bad. But you can do that with HA too!

a TOOL, indeed, that's what exactly the audists/hearies/CI makers/audist audiologist/etc whats you to think, so it is justified in place in Deaf Education. For long many Deaf academics have argued (and still argues) it infringes into the Deaf dimension unneccessarily, it is no different to HA's being as a "tool" for oralism. You still dont know what you are talking about.

 

[drphil]

Not being sure what the correct "label" I have been "assigned" after becoming bilateral DEAF on December 20, 2006 and starting the process of determining IF a Cochlear Implant was/is "suitable to the condition of my deafness-silence". I was one of the 950 persons-Sunnybrook/Toronto implanted since 1984. They had 3000 patients referred to them-same time frame. Amazing- just one out three accepted-does that fact suggest something?

I am well aware of Harlan Lane's thesis that my Cochlear implant is an "instrument of genocide to the Deaf community". the book: A journey into the DEAFWORLD . I couldn't help note that Harlan Lane is "hearing". That was in the early 90s. It has been changed.
I have previously commented that I knew I would be become bilateral DEAF after the loss in right ear-Feb/92. Thus my ongoing "interest" in deaf matters.

MY Implant is very different than the Phonak LL6 hearing aid I had for a number of years previously.
I also acknowledged I was involved with the Canadian Hearing Society/Toronto since 1992 in their course: Dealing/Coping with your Hearing Loss. I was even part of York University study on persons using CHS classes to deal with their Hearing loss.
I also acknowledge that a part of my "understanding" re "deafness' came from here in multiple comments.

 

[Cheetah]

The deaf community have allways been spot on with CI. Telling us that most deaf people don't know what CI is a grave insult and audists. I have friends and relatives with CI, and I still oppose it as necessary in many cases. As a professonial, I met houndreds of parents each year, and know for sure you are wrong when you try to make it sound as straighforward as you do. The process of deciding on CI vary from parent to parent, and asking the right questions will reveal a lot of uncertainity about the decision, even after the decision is made, CI or not.

Your "Informed choices" have it's orgin in medical thinking, and lacks input from sociology, linquistics and psychology. Parents are under pressure popular science with their focus on miracle medicines, the thrust genereal population have in medicine as a safety net and lack of understanding from the surroundings on deafness. But none of this are of interest for you, and it says a lot.

Flip, I am going to take a bit of a devil's advocate position here. GrendalQ is saying that out of the people she associates with or meets with, most of them do not understand the CI. Although I do not share the same experience or opinions as GrendalQ, I also do not travel in the same circles as she does. Think about the technology, if you do not have access to the technology it's a pretty good chance you are not going to understand how it works and how it all goes together. I have explained to many, many hearing people (and I work with some really highly educated folks) and almost all of them have no exposure to a CI and would not be able to explain how one works or goes together.

The best analogy I can think of was back when cell phones were first coming into the hands of the population, I was in a car accident and someone stepped up and said that they called the police on their cell phone. I had no idea that the walkie talking thing in their hand could actually be a phone. there was no line and was too far to be a wireless phone. To say the least, I was fairly puzzled as to how this could be. Today, almost everyone has a cell phone and everyone knows for the most part how they work.

Having said all that, I would expect the deaf population to be a little more informed on HA and CI. But this could just be because of the fact that I live so close to DC and so many deaf in this area do have a CI.

 

[flip]

Flip, I am going to take a bit of a devil's advocate position here. GrendalQ is saying that out of the people she associates with or meets with, most of them do not understand the CI. Although I do not share the same experience or opinions as GrendalQ, I also do not travel in the same circles as she does. Think about the technology, if you do not have access to the technology it's a pretty good chance you are not going to understand how it works and how it all goes together. I have explained to many, many hearing people (and I work with some really highly educated folks) and almost all of them have no exposure to a CI and would not be able to explain how one works or goes together.

The best analogy I can think of was back when cell phones were first coming into the hands of the population, I was in a car accident and someone stepped up and said that they called the police on their cell phone. I had no idea that the walkie talking thing in their hand could actually be a phone. there was no line and was too far to be a wireless phone. To say the least, I was fairly puzzled as to how this could be. Today, almost everyone has a cell phone and everyone knows for the most part how they work.

Having said all that, I would expect the deaf population to be a little more informed on HA and CI. But this could just be because of the fact that I live so close to DC and so many deaf in this area do have a CI.

GrendelQ for sure don't live in the DC area if you are right, but only know perhaps know some illiterate, in ASL and english, deaf freaks living out in the wild? Or something like that, is that your point?

 

[Cheetah]

GrendelQ for sure don't live in the DC area if you are right, but only know perhaps know some illiterate, in ASL and english, deaf freaks living out in the wild? Or something like that, is that your point?

LOL! I wouldn't go that far, but something like that!

 

[AlleyCat]

I like Flip's point of view in how "informed choices" or decisions come largely from a medical point of view. I am going to assume most parents deciding to get a CI for their child don't meet with an ASL linguist or sociologist to understand what societal impacts a CI will have on their child in the long run. We've seen many real-life scenarios right here on this board, and one in particular, in which now-adult CI children went on to deviate from what they are raised with because of a sociology impact.

 

[GrendelQ]

GrendelQ for sure don't live in the DC area if you are right, but only know perhaps know some illiterate, in ASL and english, deaf freaks living out in the wild? Or something like that, is that your point?

No, I don't live near DC, but in the Boston area -- not among what Flip calls "deaf freaks living out in the wild" (?!) Most people that I encounter, deaf and hearing alike, are pretty well-informed in general, just not familiar with how CIs work and what they can and can't provide. In fact, some people with older CIs themselves are unfamiliar with the newer tech.

My point was that I would not be angry or frustrated with people for not knowing how CIs work or expect that they ought to know more, and would be happy to share what I know and what we experience, both good and bad.

These are not stupid or backwards people as you seem to suggest, they just may have not had hands-on training with a CI or learned specifically how they work. Most people haven't. My pediatrician had heard of CIs, but knew very little beyond knowing that they existed. It isn't that doctor's specialty, and the dr. didn't pretend to know anything about CIs, had a ton of questions for us. I've encountered teachers of the deaf who were shocked that students could hear whispers or talking from outside the room, hadn't realized how distracting all that sound input could be, and another who was broadcasting really loudly using the FM system in a way that works great with her kids using HAs and needed extra high volume, but was distorting sound for those with CIs. I wouldn't expect someone who doesn't have a CI or a child with a CI or who hasn't been formally trained in CIs to know a great deal about them, just as I don't expect the average person to know the ins and outs of a hip replacement or a pacemaker.

About 2 years ago, when a relatively large group of children with CIs were enrolled at my daughter's ASL-based school for the deaf, the school's administration felt the need to bring in experts on CIs to educate the staff -- because although they were far more informed than the average person, and all had some contact with CIs of course, they found that the staff really didn't know much about how they worked and were operating under some outdated and inaccurate info about CIs. The staff is about 45% deaf, but that doesn't mean either those who were deaf or hearing knew a whole lot about CIs -- the school's medical staff included. In fact, most didn't. Everyone learned a great deal and shared some great questions and insight. They intend to do these sessions regularly.

 

[stephaniep21]

Hi Stephanie, I also find that most people -- both deaf and hearing -- are unfamiliar with CIs and how they work, what they really do. Even within the medical establishment and among Deaf friends we often find that people like to take a close look and ask basic questions about them that surprise me. We've encountered Deaf friends who thought there would be an open hole in her head, like a socket, and expected that baths were out of the question, and we've had hearing friends who thought that once implanted, the CI was always "on" regardless of whether the processors were near, and asked how she was able to sleep if it was always 'broadcasting'.

But I would never be angry at (or mock someone) for not knowing -- it's a complex device and process and so few people have one. There are a whole lot of medical devices out there that I haven't the faintest idea about. I'm sure there are many Hearing and Deaf parents who get to the early stage of considering a CI for their children, and don't yet know what a CI can and can't do. And many close friends and relatives, too (I never really understood the details of what my own father's HAs could or couldn't provide or exactly how they worked until my daughter was diagnosed and we tried HAs). But I've never met a person who continues on and has undergone the long process of researching CIs, establishing the candidacy and approval required for surgery (either for himself or for his child), and who has gotten to the critical point of giving the OK for surgery without understanding the device and how it provides access to sound. Maybe you are attributing lack of knowledge in the general public to parents at the point of making the decision or encountering families in the very early stages, well before they have made any binding decisions, before they have truly explored the option of a CI. And those who tell you either that that opting for a CI is rejecting ASL and being Deaf or that opting for ASL is isolating them from the hearing world are misinformed -- these (CI's and ASL) aren't mutually exclusive, not an either / or situation.

My daughter has two CIs, and we encounter people all the time who ask where we got "her cool hair clips" because she doesn't wear them anywhere near her ears, which throws everyone off, deaf and hearing alike. I don't mind if people refer to them or her fluency in spoken languages as a "miracle" or say it's made her life 'better' -- it can seem that way to many. Just as I don't mind when people are thrilled by my daughter's fluency in ASL and refer to it as a language that has saved their lives or made their lives 'better' and will do the same for her-- it can seem that way for many, as well. We value both modalities very highly and see her ability to use either or both as a gift, they each make her life better. The ability to communicate fluently is a wonderful and necessary thing, regardless of the mode in which it's accomplished, spoken, manual, or written.

It's great that your daughter has CIs and is also fluent in ASL. Some of the misinformation that hearing people have is because of the way that early intervention is conducted. Medical professionals meet with parents to discuss "communication options", making it sound like the child either has to be oral or sign. Instead, they should say "communication opportunities", which highlights the fact that deaf people can communicate in many ways! Your daughter is an excellent example of that!

 

[deafdyke]

It's great that your daughter has CIs and is also fluent in ASL. Some of the misinformation that hearing people have is because of the way that early intervention is conducted. Medical professionals meet with parents to discuss "communication options", making it sound like the child either has to be oral or sign. Instead, they should say "communication opportunities", which highlights the fact that deaf people can communicate in many ways! Your daughter is an excellent example of that!

and they should emphasize that although oral training can be helpful, and is a good idea, it really doesn't translate well into having it be the only tool in a dhh kid's toolbox. They should also be told that Deaf Schools do offer good speech therapy services. Many parents seem to think that Deaf schools are some voice off radical Deaf utopia.

 

[deafdyke]

a TOOL, indeed, that's what exactly the audists/hearies/CI makers/audist audiologist/etc whats you to think, so it is justified in place in Deaf Education. For long many Deaf academics have argued (and still argues) it infringes into the Deaf dimension unneccessarily, it is no different to HA's being as a "tool" for oralism. You still dont know what you are talking about.

Grummer WTF are you even talking about? I'm saying the same thing you are saying, but you're making me sound like rick48 or faire joure!!!!! I know perfectly well what I am talking about b/c I have lived it!

 

[GrendelQ]

and they should emphasize that although oral training can be helpful, and is a good idea, it really doesn't translate well into having it be the only tool in a dhh kid's toolbox. They should also be told that Deaf Schools do offer good speech therapy services. Many parents seem to think that Deaf schools are some voice off radical Deaf utopia.

Sure DD, I think there are some great deaf schools that have some strong focus on developing spoken language and have good speech therapy programs, but those are auditory-oral schools, right? Or are you referring to TC-type programs? My daughter's bi-bi school is very intentionally focused on ASL, they enforce a pretty strict voices-off policy, and for good reason: accessibility for all students, whether they have some access to sound or none at all.

 

[deafdyke]

Sure DD, I think there are some great deaf schools that have some strong focus on developing spoken language and have good speech therapy programs, but those are auditory-oral schools, right? Or are you referring to TC-type programs? My daughter's bi-bi school is very intentionally focused on ASL, they enforce a pretty strict voices-off policy, and for good reason: accessibility for all students, whether they have some access to sound or none at all.

No, not auditory- oral schools. DEAF schools. Many Deaf schools do offer VERY good spoken language therapies, in addition to ASL!!!!

 

[CSign]

No, not auditory- oral schools. DEAF schools. Many Deaf schools do offer VERY good spoken language therapies, in addition to ASL!!!!

Perhaps most (if not all) schools for the Deaf offer speech therapy to students who require it via their IEP. However most (if not all) schools for the Deaf (not Oral schools) do not utilize spoken language instruction. The students have access to English (written form) because they are taught it as a second language. The fact is though, that the significant majority of schools for the Deaf do not utilize spoken language. The only exception being schools that use a Total Communication approach as Grendel mentioned.

 

[CSign]

I also agree that the ignorant comments have less to do with an "Audist perspective" and more to do with an uneducated perspective. The key is education and information.