Sunday, December 14, 2008

Deaf Community Phased Out?? My Reply to Drolz:)


Drolz said...
Hi Jodi,

Aw, thanks so much! I really appreciate your kind comments! :)

Even though our kids are using different approaches, there are just so many parallels in their experiences (and the way we pull our hair out over them LOL).

Related to that last entry: I contacted my son's school district to see if there was a way to get all the signing deaf/hoh kids together for a monthly event or something just to see that they're not the only ones working hard to get by as the only deaf kid in their respective schools.

The response I got floored me. They said that thanks to digital hearing aids, FM systems and cochlear implants, "the need for ASL and interpreters has decreased significantly."

Whew! I have such mixed emotions. On the one hand if the auditory-verbal / CI kids are really doing that great, then more power to them. (If not, then that's a whole 'nother discussion.)

On the other hand, I used to groan when some people accused the CI industry of trying to eradicate Deaf culture - and ironically, now that I'm having a hard time finding signing kids who are just like Darren, it really does feel like we're being phased out. It suuuuucks.

Am really in the dumps over this - am thinking of all the deaf clubs, the deaf performing artists, the great experiences at Gallaudet/NTID, etc, and am wondering if all of that will soon be a thing of the past.

I highly value your opinion as I see that Jordan, too, is one of a kind in his school just as Darren is over here. Do you feel the school district's assessment is correct? Are these kids really doing that great? Or will they be going through the "Met Deaf, Wow!" phenomenon later on (seeing how numerous students with CIs still choose to attend Gallaudet or NTID instead of a hearing college)? What are your thoughts? Would love to get a perspective from a parent as opposed to a school district or medical profession.

Many thanks and keep up with your inspiring posts!

All the best,
Drolz

Dear Drolz, (Have you noticed that I LOVE your last name!!??)

Jamie Berke and other bloggers on Deafread.com have been posting about the "Phase-Out" for as long as I've been here. Yes, the CI Community is growing stronger and the shift is becoming greater-in the beginning, when Rachel was being accomodated, I'm sure Melissa found herself to be in a position where you are currently with Darren. Yet she fought and fought to have her child's needs met just like you are doing with Darren.

You know better than most parents how important it is for Darren to see other children living his experiences and difficulties. And, as we know, you are more sensitive than most, so I am positive that you will find a way to organize this meeting. Yes, Jordan is doing well because there is a person in the classroom with him who is well aware of his needs as are ALL of his teachers. In the beginning, one teacher asked me, "Could he become potentially violent?" And so the education process began *smile*. Two years later, his teachers understand his personality and they help him to meet his own needs. Now, if he gets tired from the chaos in the classroom, he is allowed to leave the room for some silence until he feels ready to come back inside. If there is a particularly difficult concept to be studied, his support teacher outlines the important aspects, and Jordan takes home the outline to study it more thoroughly. Don't think that kids flip on their processors and suddenly all is well. Just as you are working for Darren, so are we the moms of CI KIDS. Just read Val's blog and you will understand her daily experiences.

There will always be a need for the Deaf Community, despite the fact that Yes, CI kids are doing "that great." However, there are many CI kids that are not doing "Great enough." They will need the Deaf Community. The Deaf Community is evolving, at least by what I read on Deafread.com, it seems to be. I know this is only a small representation, but I believe it's fairly indicative.

Once people become more aware and convinced of the fact that ASL should not be a requirement for membership, the CI Community-that is growing, and the Deaf Community will merge and become stronger. Sounds like a bunch of idealistic crap *smile*, but it kind of has to happen.

I am convinced that Jordan will become a part of the Deaf Community when he gets older, not because of NEED, but because of curiosity and common experiences. Sometimes we don't realize that a part of us is missing until we find it.

Hugs to ya, Drolzy!
Jodi

123 comments:

MM said...

I tend to think the arguments about deaf culture are on the wrong things. The debate is really about changing the entire nature of a 'deaf community' so it attains 21stc status and recognizes it is no longer 'culture' exclusive, but has to accept and adapt to all people with hearing loss and however they communicate.

That here is no point nor mileage in saying things must go this way or that way, or you are in or out of it, we are ALL in with it now, it's just details on how to cross the lines drawn, that is left. 10-15 years, all over bar the signing, can't wait.... :)

Jodi Cutler Del Dottore said...

...but has to accept and adapt to all people with hearing loss and however they communicate.

Coming soon...*smile*
Very interesting comment! Jodi

Anonymous said...

Hi Jodi and Drolz,

I checked Drolz' website but wasn't sure where to leave a comment.

Briefly: deaf son, ASL first language, got first CI at age 5.10, second CI at age 14.2, still has interpreter for all classes and spends time in DHH program for a small part of the day for resource and DHH social studies. His teacher has an amazing ss class which he just loves, so we don't mainstream him for that. Teacher also won Teacher of the Year award for our state, AWESOME! He is mainstreamed, in 9th grade, in honors English, Geometry and 10 grade biology as well as 2 electives.

As a parent of a deaf child with cochlear implants, it doesn't have to be either/or. CI's and ASL are not mutually exclusive. There is a huge continuum of communication and my son LOVES that he can move between deaf and hearing worlds at will. He can communicate with everyone. He signs, he understands sign receptively, he hears, he speaks.

The bigger issue for deaf/hoh kids is isolation. It is not about being deaf, it is about being different. No matter how they communicate, every single deaf/hoh child in Drolz' son's school and Jodi's son's school will have a much better understanding of how another deaf/hoh child feels in that environment.

For my son, the socialisation with other deaf/hoh kids is paramount to his day. Without it, he would not have the confident go-get-'em attitude he has right now. When he is done being stared at and weirded out by other kids reactions,to his implants, to his voice, to the interpreter, he gets to hang out with people who get him for who he is. That is what he gets from the deaf community. A sense of belonging no matter how he communicates.

Best, Orla

Dianrez said...

True, CIs and ASL methods are not mutually exclusive, and should have opportunities to mix from the earliest. The child will hopefully become competent in both and by adulthood mix and match as he pleases. That is true biculturalism.

It is a terrible thing to be isolated in a hearing community, even one that is supportive 24/7. Only when one meets others like oneself can the Deaf young person feel at home in the wider community, having a secure base in self-concept.

MKChaikof said...

Two comments - First, yes things have turned incredibly in the past 15 years since Rachel started kindergarten. At that time, there were those of us here in Atlanta who had to fight our school systems to put our children in regular mainstream classes and not in self contained TC classes. Rachel did not even receive any special ed until 6th grade for that very reason. Now the last I heard the one TC program in my entire county was down to 2 children.

My second point is that feeling sad because children in the current generation will not get to experience something that an older generation valued in the past is certainly not limited to those who are deaf. However, as with everything else, each generation makes their own way and creates their own social networks. One only need sign onto Facebook to see all the networks there. Rachel is connected with young adults all over the world who are like her in having gotten CIs at young ages and being mainstreamed all the way through. In addition, CI conventions and local chapters of national groups create similar in person networks. In the New England area, there has been a very strong CI group for families for years, and the CI kids have grown up together. Thus, while the older generation may think that today's deaf children are missing out on deaf clubs, they are really not missing anything. Rather, they've made their own way and created their own places. Many do make their way easily in the mainstream, but they also enjoy coming together on their terms because it is natural for all of us to seek out others who share similar experiences. Their experiences just happen to be different from the deaf who rely on ASL to communicate.

Candy said...

Great post, Jodi! I really thought it was great and many comments were also great to read. I would have to agree with MM and, also with others to some extend.

I doubt some advocates of C.I. have met with and interacted with those kids who have not managed to do well with a C.I. It would appear to me that there needs to be an oversight to ensure that these kids do not fall through the cracks. And I do WISH someone would look into that, especially for those kids in a minority family, who's parents do not know English (I'm not talking about ASL here, I'm talking about Spanish.)

I do want to say that I do see in the future that many C.I. will be drawn to the deaf culture simply because many deaf people that are already part of the deaf culture have gotten or are considering getting a cochlear implant. There will be more of these deaf people interacting with those people who have had C.I. since they were kids, they will eventually meet up with each other in situations what brings them all together, simply because they all have C.I. and as a result, they will be curious about the deaf culture. I have already seen a few.

I do think that this whole deaf culture is evolving. Deaf people are more accepting, if not on deaf read, I can assure you, it is out there. :)

I for one am considering it and when I do get it (If I do), I definitely will participate in events that are geared towards those with a C.I. And meeting people, they will be curious about my culture.

I've had already experience that, going to a mainstream oral program and the kids there were already curious about my culture, especially when they find out my parents are deaf. This is just one example of why I think everyone will eventually come together and make the deaf community a strong one. Look at HLAA. Now,many of them are already part of the deaf culture. Years past, they were not.

Definitely evolving and I do not foresee continuing divide. But, I think there needs to be a continued improvement with respect towards preference in language, whether one wants to sign or not.

That's just my observation, and ya know, I could be wrong...but, time will tell.

Jodi Cutler Del Dottore said...

Thank you to everyone for your interesting comments. I think it's an issue that has been addressed in a more objective way also due to the parents from all spectrums of the Deaf community who are raising their voices and sharing their experiences more often.
Change is a good thing, I think, although it isn't always easy and never comes about without some type of sacrifice. It helps when we can sort of imagine what we would like the end result to look like on our way there...
The more the community evolves, the easier it becomes to see the possibilities for the future. I think they're lookin' pretty good right now. The important thing is that there are parent advocates with a voice ready to make sure the needs of their kids are always met. That is of fundamental importance.
Thanks again for your comments, Jodi

MKChaikof said...

Here's a good analogy of technology changing things in some ways for the better but also leaving some nostalgic for how things were - Journalism, specifically print newspapers. Rachel has been interested in pursuing journalism/photojournalism,and, when we talked about it, she readily understood that, in this day and age, old fashioned print newspaper based journalism is not the way to go to prepare for a future career. One need only read the recent headlines about the Chicago Tribune and New York Times to realize this.

My parents are still from the generation that cannot imagine not reading the print newspaper while eating breakfast. I, on the other hand, have kept my subscription to the regular newspaper, but as more and more days pass that it gets put in the recycling bin without being read because I've read the NY Times and others papers online, I think seriously about discontinuing my subscription. My kids, in the other hand, think of the print newspaper as something to put on the table to protect it from art projects.

Whether it's deafness, journalism, or other areas, technology is advancing rapidly and is changing much of our lives. I think that, when we either give our children advice or make choices for them, it has to be with thought to what is and, more importantly, what will be and not to what was. While I am aware that there are children who cannot hear and speak as well as my girls can with their CIs, the majority of those who are identified and implanted early and taught to learn to listen and speak will succeed, and, thus, the numbers in the signing deaf community will continue to shrink. Whether someone views this as a good or bad thing is not the relevant part. What is relevant is that, in making choices for our children, we need to think about their future and the reality of what it holds for them.

K.L. said...

I have believed all along, that inclusivity is the key. My daughter likes being able to speak and sign. She likes being deaf, and she likes interacting with everyone. All age groups, hearing and Deaf. She happens to be the only deaf child in her elementary school, and is doing fine. But we know she should also be able to interact with kids she can relate to. Both Deaf/deaf, with implants and without. So in middle school, she will be bussed to a school in the district that is farther from our house, but which has a deaf program. They are all mainstreamed. It is not a pull-out program. But there are better services, and teachers who have a better understanding of deaf issues. There will be many more kids like her for her to be around.

Dianrez said...

Perhaps I should make this topic a blog of my own, but after reading Melissa's latest message, felt it belonged here.

Last weekend I was at a club dinner, all ASL-speaking Deaf of various hearing levels and the topic touched on the CI. As might be expected, the feelings were varied and passionate.

One guy, about 30ish, declared he would get a CI and when I asked what he expected to get from it, he said, "understand words". I noticed he had no hearing aids on and asked if he uses them. "No, they don't help me." Does turning up the volume help him understand speakers on TV? No. Basically he has grown up profoundly or severely deaf. "You'll see. I'll understand everything. It'll take time and lots of practice, but it'll happen."

I felt sad for him. One would think that professionals would be more careful about raising expectations, especially at his age, or moderating those who are too optimistic.

As Melissa claims, children born deaf today will apparently become indistinguishable from hearing children. Or, are the professionals doing it again?

One needs to be realistic about this and consider that one study found that just 4% of the CI children are fully functional through all levels in hearing school.

Due to this, I am sure that eventually CI users and the traditional Deaf communities will merge and all use ASL for relaxation, community, satisfaction and full information.

Candy said...

"children born deaf today will apparently become indistinguishable from hearing children."

Time will tell if that statement is correct. I will believe that statement, if my sister who teaches at a mainstream deaf program tells me that there are NO kids with C.I. in her classroom. She gets real frustrated because the majority of these kids have little or no language when they first enter her classroom. They should be learning certain things yet, she has to teach them ASL so that they would have language. Thus she and I have different view on all of this. Yet, I do not teach deaf kids, she does. I don't know. It seems like perhaps certain parents should not have their kids implanted?? because they can't or do not have what it takes to put effort into what is needed to make their child succeed? Shouldn't there be something in place to prevent that from happening? Why is it that many of these kids that fails, are minorities? Did the professionals/manufacturer take advantage of these minorities? My sister tells me that many of these parents tells her that once their child gets implanted they were supposed to be "hearing" and that's that. Many of these minority parents do not seem to understand that it requires a lot of effort on their part. And because of these kids, the percentage of success for C.I. will be reflected as such. Kind of similar to Bi Bi program, where there are multiple disabilities that affect the scores.

MKChaikof said...

Certainly perception is affected by experience. If you take a look at the video at http://cochlearimplantonline.com/blog/?p=330 (transcript below the video), you will see over 20 of the kids whom I have come to know very well. Only 3 in the video do not have CIs, the first woman, Chad and Grace. All of the ones from the second one forward I have met in person. Except for the first one, they all were raised with the A-V approach, mainstreamed all the way through, hear and speak very well, and none of them know sign. When I go to CI conventions, I see rooms filled with more kids and young adults like these. I continue to believe that they are the majority of the deaf in the future.

As has been said many times before, it depends on parental involvement, quality of professionals and program, and age of implantation. All of the kids in the video had the best of all three.

Anonymous said...

MKChaikoff,

While I do see what you're saying and agree to a certain extent, but also when I read between the lines, it also tells me that you are quite naive in a lot of areas when it comes to deafness (aside from the CI aspect) and I won't bother trying to explain because I could try explaining until I am blue in the face and you still would not get it. No disrepect purposely intended here, but this needed to be pointed out.

Candy said...

MKChaikof, I see where your perception is and I'd agree, I would probably think the same thing too. But, what about the kids that falls through the cracks, because parents are not involved or perhaps parents are not given resources? What of these kids? I think I am more concerned with the minorities, which I hear are being implanted in great numbers in a bigger metropolitian cities. It seems like everyone is sidetracking that issue and avoiding it. I don't have a problem with the implants, but I do have a problem when it comes to parents not being well informed (of what it takes) due to lack of English, they were told their child will have normal hearing. They think that is all there is to it, get their child implanted and that's it. I think I would rest easy if I knew for sure that something is being done for these kids.

Rachel @ Cochlear Implant Online said...

My mom's comments are good, and I'd like to add my view as a CI user. As someone who has interacted with various deaf people from all different walks of life, both online and in person throughout my life, I have found that it's best for me to be part of the deaf community that shares my views and where I can feel the most comfortable. Basically, it's the community where I can feel that it's "my home." That deaf community is the CI community. That is because that is the community where I have been well accepted, and I can relate to many of the people in that community. Thanks to my mother, she has allowed me to immerse myself in the CI community by taking me to various CI-related events and conventions. At these places, I have met over hundreds of people. It's an incredibly overwhelming experience because I always felt that I was on a cochlear implant planet! -All throughout my life, I have been mainstreamed and one of the only hearing impaired students in the school, and thus, coming to a convention where I'm surrounded by hundreds of CI users is a "culture shock" because I come to a realization that I'm just an ordinary person. I'm attending another cochlear implant convention in March where I will get to meet some old faces and will also meet some new faces. Thus, I think the deaf community doesn't have to be defined as one community. There can be many different deaf communities, and people like me can choose the one which they would feel most comfortable being part of.

One thing that I question about teaching sign language - even if professionals provide parents information about choosing an approach that involves sign language, they're still going to have to work as hard as the parents who choose the AV approach because those parents would have to learn how to do sign language. From my understanding, learning sign language is like learning a foreign language which means that it takes several years to become fluent in it. So, my question is - why would choosing an approach that involves in using sign language would be a better option for parents who are not involved with their children's life?

Rachel @ Cochlear Implant Online said...

"One needs to be realistic about this and consider that one study found that just 4% of the CI children are fully functional through all levels in hearing school."

Dianrez,

Can you please provide a web link to this research studies?

Thanks.

Jodi Cutler Del Dottore said...

MORNING!!!!!!!!!!!!First of all, Melissa, your analogy with journalism was excellent...and a little sad.
Candy,
You said "I don't know. It seems like perhaps certain parents should not have their kids implanted?? because they can't or do not have what it takes to put effort into what is needed to make their child succeed?"

When I was at the CI course in Pisa a month ago, they introduced the concept of Auditory-Verbal Therapy (for the first time, unbelievable)and a discussion ensued. With Auditory-Verbal Therapy, children would see the Therapist once a week instead of four times a week with regular speech therapy, because AVT gives the parents a more active role in the process.
There are some parents who are capable of handling this role and giving their children consistent language input with quality language-based activities, while other parents just do not have this capability. We have never paid for a minute of speech therapy, the National Health Service covers everything. So, what happens now? Do parents opt for less therapy or more? It depends on the parents...EVERYTHING depends on the parents once you have the ci functioning, properly mapped and fully taken care of- Once the professionals do their jobs, it is the parent's responsibility to help his/her child achieve and not all parents are capable. There are many factors involved, but there is no comparison between a hearing aid and a CI in providing access to sound.
The rest just...depends.
Oops! Just read Melissa's last post which basically said what I just said. *smile* BTW, please go watch that video, it's amazing, really--another fine RC production.

And Rachel's comment: "So, my question is - why would choosing an approach that involves in using sign language would be a better option for parents who are not involved with their children's life?"
...is so true-can speak from experience *smile*
Rachel-kiss a koala for me and hug Naomiiiiiiiiiiiiiiiiiii!! *so jealous!*

kim said...

Hi Jodi,
This has been a really great discussion. I didn't grow up deaf and haven't raised deaf children, so can't comment on that, but would like to point out the difference between ASL and 'sign' because of the comment Rachel made--

"One thing that I question about teaching sign language - even if professionals provide parents information about choosing an approach that involves sign language, they're still going to have to work as hard as the parents who choose the AV approach because those parents would have to learn how to do sign language. From my understanding, learning sign language is like learning a foreign language which means that it takes several years to become fluent in it. So, my question is - why would choosing an approach that involves in using sign language would be a better option for parents who are not involved with their children's life?"

ASL does take years to master as a foreign language because of the complex sentence structure, and the fact that visual expression in language is so different from spoken language. You really have to think differently in order to express yourself well visually.

BUT learning the signs and putting them in English order is not difficult at all. Signed vocabulary is so iconic the vocabulary is relatively easy to pick up. Most deaf people I know have picked it up very, very quickly-- perhaps because we are so visual by nature. Because a person can speak and sign at the same time, signing can help the deaf person doubly.

I believe this is why some parents choose total communication over AV.

As a deaf adult I know how much I benefit from sign. Many late deafened friends who speak clearly use sign simultaneously while speaking. Many of them have CI's. I also know people whose CI's have failed after several years of successful wear. It happens. Whew! Sure is nice to be able to fall back on sign when that happens. There are others who just will not benefit from a CI because of the type of hearing losses they have. Because of my personal experience with hearing loss and benefiting from sign, if I had a deaf child, I would make sure he or she learned sign.

I have many hearing friends, but I do cherish time with my hh/deaf friends because of our shared experiences of hearing loss.

Rachel @ Cochlear Implant Online said...

Kim,

I understand the differences between SEE and ASL, but even if parents choose to use SEE, they'd still have to be involved parents by attending courses that would teach them how to use SEE and use them actively at home with their children.

kim said...

Well I wasn't denying parental involvement, and almost posted something about that, but decided my comment was turning into a blog itself.

Yeah-- parents need to participate in their children's lives whether their children have special needs or not. Kids whose parents spend time with them tend to perform better in school. Period. It only makes sense that a child with special needs would do better with an involved parent. Many parents choose SEE, TC or SimCom and some even choose cueing because they feel it addresses their child's specific needs. Maybe even more importantly, all these various alternatives including AV may appeal to parental interests, as well. It's nice to have options. :-)

But anyway-- I just re-read your statement and saw you were questioning why choosing ASL would be better for an 'uninvolved' parent. You're right. There is no magic program for the uninvolved parent-- and pity the child whose parents can't be bothered.

Karen Mayes said...

A deaf Australian guy wrote a blog, nitpicking your blog, so I re-read your blog and the comments... I do get the idea why certain people might strongly disagree with you. I agree that CI community is part of d/Deaf community... there are all kinds of niches that make up the d/Deaf community, and CI is just one of the niches, just like SEE, ASL, etc.

The point is the ability to COMMUNICATION... in all kinds of way.

Anyway, many comments raise good points and valid concerns, especially the parental involvement, in the minorities.

The d/Deaf community evolves, with the evolvement of technology and medicine. I should not feel threatened by CI. Sure, the Deaf Culture might be a bit smaller, but there'd always be an interest in it, enough to help Deaf Culture to thrive.

Rachel @ Cochlear Implant Online said...

I did see the Australian guy's blog too, and while he has the right to voice his opinions, I strongly disagree with his opinion about the fact that there is no such a thing as a CI community.

As a CI user, being part of the CI community means more than just wearing CIs. It also means sharing ideas and experiences. We discuss our experiences of learning to hear and to speak, not hearing while we shower, swim, and etc, misunderstanding certain conversations, hearing in background noises and etc. We also talk about how we're happy to be able to hear on the phone, hear the music, and all moments when we feel the need to appreciate the sounds surrounding us. We also discuss the latest technologies including accessories for our CIs such as FMs, soundfield systems, headphones, and etc. Parents of children with cochlear implants are also part of the community too to discuss their experiences of upbringing their deaf children with CIs and to ask questions. To see a perfect example of CI community is www.cochlearcommunity.com (Jodi, you should seriously join this!) and www.hearingjourney.com/index.cfm?langid=1 . Many people on these online communities discuss all those topics that I mentioned. While many of us do live successfully in the hearing society, we certainly do need a place where we can meet other CI users or parents of CI users so that we can discuss our experiences and provide each other some support. A few examples of things that I have discussed in the CI community are - which cell phones are the best for CI users, which one is better, FM or Soundfield system, which iPod headphones works the best for CI users, is getting a second implant worth it or not, how do you handle hearing in background noise situation, and many more questions that I can list - these are the questions that people who have never been part of the CI journey cannot discuss...

Anonymous said...

I just finished reading i. Mephisto's blog, "Community Membership Requirements." I refuse to comment his! Boo-Hoo! He should get a black coal.

As a deaf person, it would be me whom is facing to make a huge decision whether I belong to the CI community or not. Of course, they *will* welcome me.

Segregation is *not* necessary! This is not the 1800's, 1900's! This is 2000's!

Think about Hearing Loss Association of America(HLAA)! I applaud HLAA for embracing the diverse people.

White Ghost

Valhallian said...

This comment is not directed at any one commenter, however, Rachel's comments has inspired me to write this. Allow me to elaborate a little further as I can easily relate to the situation that she has explained that she is in. When I first attended college, I did not know ASL.

Given the fact that this college had one of the largest deaf programs, this deaf communities had several "sub-communities" within itself. That being the case, at the beginning I was in the "oral deaf" community where the oral deaf hung out with each other because we all felt most comfortable with each other (just as she stated she did with the CI community) and I am not going to sit here and say that it is a bad thing, because it is not, it is ok.

Once I learned sign language, it allowed me to be a part of the other "sub communities" and I was able to fit in with these other sub communities as well. Right now, I can pretty much make myself at home with any of these sub communities and this has really broadened my horizons. I could attend a CI convention and I would likely be able to make myself a part of that community rather easily. I could attend AG Bell convention and do the same, as well as with the NAD convention.

I am not going to attempt to state that it is better for her to do this or that, as it is not my position to do that. However, allow me to give an example and how non-signers could miss out on some beautiful opportunities.

One time I was at this event, that celebrated an anniversary relating to the deaf. This audience was a mixture of both deaf and hearing people. There was entertainment done by signing performers and there are certain performances that just cannot simply be interpreted by interpreters. In this event, this entertainer was so funny and he had me in stitches laughing so hard. I looked around the audience, the signers were laughing hard as well, but what astounded me was that the hearing people that did not know sign language were just sitting there with a straight face and not laughing at all. ASL entertainment is indeed a beautiful language to watch and there all different forms of that.

Unfortunately, it cannot always be interpreted for the hearing people to enjoy, for example, A to Z poetry, it cannot be interpreted into voice, but they are a beautiful art form and language to watch.

It was like where an American hearing person may not necessarily laugh at a comedian from the UK (English humor). By broadening in my horizons, it has allowed me to understand different cultures, their jokes, etc. You say you have hundreds of friends in the CI community, I could easily say that many signers have thousands of friends worldwide so that realy isnt any different.

You said something that I saw to be a very very important point...."While many of us do live successfully in the hearing society, we certainly do need a place where we can meet other CI users or parents of CI users so that we can discuss our experiences and provide each other some support."

In theory, this is also explaining that many CI users may not possible be 100% integrated into the hearing society and be 100% conformtable with it, otherwise they would not need support from others in this manner. Thats ok, it is also the same with the signing community and there are many signers that successfully live in the hearing society too.

Granted, technology is a beautiful thing and it has improved all of our lives one way or another. There will come a time when ASL recognition software will come out and different groups and organizations have already started working on that and it needs to be modifed and fine tuned, just the same way as it is with the CI technology, just as the CI has helped you function better in the hearing world, ASL recognition software will do the same for signers, help them function better in the hearing world as well.

Bottom line, if we all could try to become a part of one deaf community that is more united than divided, (we all can see these sub communities being divided) we would be able to accomplish more as a "force".

It is my opinion that the deaf community will never ever be phased out, however, it will evolve.

Anonymous said...

My son Matthew benefits from the implant and speaks well. But he has strong ties to the deaf community. He goes to the school for the deaf in our state and loves it.

My concern is for all those children who are "onestreamed". They are isolated. It is not enough to join Facebook and interact with those like themselves. They need physical contact with others like themselves.

My son Alex is hard of hearing and yes he functions well. However, when he was "onestreamed", the only interaction with others was on the computer. He still was isolated and depressed. So he transferred to the school for the deaf and is much happier.

I have a hearing daughter and would not take her away from her hearing friends just because the majority in our family is deaf.

Hearing parents of deaf/hoh kids need to do the same. Honor the deaf/hoh community and give your child access to deaf/hoh peers.

Sue

Anonymous said...

I see parents here commenting that kids with the CI who have gone the AV route are different. No they are not.

I myself was a successful oral hoh child. I benefited from hearing aids. I speak well. What is sad, is I remember my father saying that I should not be around "those deaf people who sign".

I was the only deaf child in my family. I did not have access to these deaf people who signed. I was not hearing either! So where did I fit in?

I have found the deaf community, my world has opened up. I use sign language.

Parents need to have an open mind and embrace all deaf/hoh people. By honoring them, they are in turn honoring their child.

Karen Putz said...

I share Drolz concerns because I have three deaf and hard of hearing kids and finding social opportunities within my own school district has been hard.

Everyone needs a sense of community, a sense of belonging that is completely comfortable. All three of my kids have done well in mainstream settings, but I find that they really kick back when they're around friends where communication is truly equal. My district has nearly 70 hard of hearing kids but very few are connected to one another. I worry that many of them have developed mostly "surface" friendships and simply "cope" with limited opportunities to interact.

I applaud Rachel's parents because they've used many opportunities to connect Rachel with other kids with cochlear implants and you can see that Rachel finds great comfort in having the opportunity to connect with others like her. I just wish the same for every deaf and hard of hearing kid out there-- I know there are many who have not even had the opportunity to connect with another kid sharing a similar journey.

The deaf and hard of hearing community is certainly evolving, but the human desire to connect will always be the same-- we have to work to make sure the bridge of communication is open to all.

Dianrez said...

Curious, I went over to Mephisto's blog and feel he has worthwhile comments. He talks about two different communities: the Deaf (ASL using) community and a wider defined one that includes all people using oral, CI, HA and other methods.

One aspires to integration with the world at large on the world's terms. The other aspires to integration on their own merits. One is a medically defined community and the other a cultural one.

While I admire an all-encompassing view that generously includes all people with lesser hearing and those involved with them, it feels more right to me to consider a view that respects these people as a unique, culturally defined entity. That is where their intrinsic value, strength and contribution comes from.

Rachel, the study you wanted can be found at:
http://www.perspectiva.ufsc.br/perspectiva_2006_especial/03_Robert.pdf
Although it contradicts other studies such as those made in St. Louis, it is based on general demographics, not a narrow sample. I would not be surprised to see more studies coming out of this kind in the future.

Dianrez said...
This comment has been removed by the author.
Dianrez said...

I'm still trying to provide the link that was truncated twice already:

(copy and paste both lines into your URL:)

http://www.perspectiva.ufsc.br/perspectiva_2006_especial/
03_Robert.pdf

MM said...

Deaf culture is a re-invented wheel each generation there are few heritary deaf (2%). This generation is more open than any other has ever been, the next may be even more so.

Whatever 'culture' was it will change, as will the criteria of its members. Acceptance means no barriers, and no carping about what people wear, have implanted, or how they communicate.

For those who constantly state 'Deaf Culture' is under pressure from other deaf areas, I say, it's progress, it is natural evolution, look on extensive inclusion of all, as a means of enhancing the deaf way.. and taking it forward, you can't live in the past.

Drolz said...

Once again... WHEW!! Thank you Jodi, for opening what has been an awesome dialogue. :)

Thanks also to Valhallian, Sue, and both Karens for saving me the hassle of writing another book. There are so many issues here and you said a lot of things that were on my mind, too. I also appreciate the CI families' input as it gives me a better sense of where this community is going.

Some random thoughts I still have:

1) What Karen Putz said about "they really kick back" reflects exactly what I've said in the past about the need to be mindful of the difference between "fitting in" and "belonging."

As a former onestreamed kid myself, I can't tell you enough how SO MANY hearing people in my life (teachers, family, etc) insisted I was doing "just great - he fits in just like any other hearing person." And I can't tell you enough how wrong they were. I bluffed my way through. I also bluffed myself. When you have so many people telling you how great you're doing, you allow yourself to believe it. You should have seen me when I graduated from high school. Thought I knew it all. Only when I met my true peer group at Gallaudet did I see the truth for what it was. By the way, this is why I'm really glad Rachel gets to connect with other CI users. It's the same thing. ASL or CI, peers are priceless.

2) That analogy about print newspapers... uh, ahem. No offense. But the Deaf community - and I'm emphasizing capital "D" Deaf this time - is much much more than that. I understood where MKChaikoff was coming from
and in fact, there's some irony there. I don't think it's really the CI, but actually pagers and videophones that are hurting Deaf clubs. There's not as much of a need to drive anywhere to meet someone. :)

But still... the Deaf community. Whew. You just have to be a part of it to get this. The power, the beauty, the sense of belonging, the mind-blowing ASL performances... it's awesome. You have to be there to really cherish it the way I and many others do. And I hope it's still there for my son when he goes to college.

Related to that: the Deaf friends that I have... the ones I'm spending New Years Eve with... the ones I spent Deaf Thanksgiving with (http://www.deaf-culture-online.com/deaf-thanksgiving.html)... they mean the world to me. They're my family in a way no one else can be my family. I hope my son has that kind of Deaf family when he gets older.

3) My own experience with CI users gives me the impression that there's a wide range of people with a wide range of experiences. I personally know people who love it, hate it, or are somewhere in between. It's the ones who are in between who worry me. Hope they get the same kind of support that I hope my son gets via ASL. As Jodi pointed out earlier, we can't just sit back and assume everything is okay. We have to straddle that fine line where we have to keep nudging our schools to be aware of what's *really* going on with our kids, and at the same time sometimes we have to back off and allow our kids the opportunity to advocate for themselves and learn how to overcome adversity.

ASL or CI, being a parent is never easy. Our work is never done :)

Thanks again Jodi, for your support and for opening this dialogue. You have this perfect balance of caring and no-BS advocacy that's paving a bright future for Jordan. I intend to do the same for Darren and who knows, maybe someday their paths will cross. Probably on a baseball field somewhere. :)

Have a great holiday season everyone!

Drolz

Anonymous said...

Drolz --

There is a big IF.

If you were in the deaf school and living in the residential school (without the oral school), what would you be?

Answer: You might never learn about the hearing and CI's society.

Many hearing parents with culturally deaf children never put their culturally deaf children into the hearing activities. So that way, they can learn and respect from the hearing's moral values. That's so sad. That depends on the situation that they *can* appear to the hearing world.

There's a lot to think about.

White Ghost

Anonymous said...

Not to mention a fresh breakthrough spinning around the medical news networks using infrared light to stimulate the auditory nerves. The preliminary are showing results to be better than the CI's themselves.

Like I said in my previous posts there is a lot of energy, ambition, and funding going to developing new and advanced forms of hearing loss mitigation.

We can only guess what is fueling this type of ambition. It's all in your hands!

Richard Roehm

Anonymous said...

Hmmmm, the comment about being in a deaf residential school and never learning about CIs and hearing society???

My deaf son has the implant. He loves it. He made the decision to get one (he is 12 years old). He can listen to his favorite music and follow the lyrics. His lipreading skills improved because he can hear better.

He is in a deaf residential school. He is learning ASL and loves being part of the deaf community.

I am a deaf parent. I am giving him the best of both worlds. There is nothing that says you can't do both.

Sue

Drolz said...

More power to you, Sue! Thanks for sharing.

White Ghost, I prefer to look at it this way: Prior to Deaf world, I was a submissive wallflower in the hearing world. After Deaf world, I get along fine in the hearing world - on my own terms. I don't feel the burden of having to be everything hearing people want me to be. I relate to them exactly as who I am. Hope this makes sense.

Richard, I looked up the infrared light technology for CIs. Fascinating stuff. Seems that right now they need more research to make sure that after prolonged use, the infrared light doesn't overheat the auditory nerve.

Right away I thought of this one hearing relative who talks A LOT - a real Chatty Cathy. If I got the new infrared implant and she talked to me, there would be smoke coming out of my ears. Oh, man. Bad Drolz. Bad, bad, Drolz. Couldnt help myself. But thanks again for the info :)

Jodi Cutler Del Dottore said...

Um, not to be dramatic or anything, but I've had a really, really difficult night, so Drolz, could you please field any comments, after all, this was your post sweetheart:)
Really amazing comments...thank you, Jodi

Anonymous said...

Drolz --

I understand and make sense to me! As long as the hearing people respect for who you are. That's the matter to all of us! :-)

White Ghost

MKChaikof said...

No one can completely step in another person's shoes. Thus, no one can tell Rachel based on their own experiences that she is missing something by not learning ASL and joining the signing deaf community when she feels that she is leading a very full life without it. Neither can you understand how well she hears or how well she fits into the hearing world based on your experiences, especially if you are a deaf adult raised orally without a CI. The vast majority of kids and young adults with CIs whom I've met are going to continue to make their way in the hearing world without seeking out the signing deaf community as it exists today. The signing deaf community came together out of a need that does not exist for these kids. That it took off from that point and became more than just a need-based relationship I am not denying, but that is what started it.

That kids and young adults with CIs seek out others who are like them in addition to maintaining their friendships with their hearing friends in no way indicates that they don't fit into the hearing world. I know that I have different friends for different reasons, and I'm not part of one big group. It's no different for Rachel or her generation of friends with CIs. I count among my closest friends some other parents of A-V children with CIs and my girls' A-V therapist. That in no way indicates my discomfort among my close friends who have children with normal hearing. Rather, I find comfort in sharing with my friends who have experienced what I have in raising my girls, but it does not diminish nor negate the importance of my other friendships.

Anonymous said...

MK,

A lot of people mistakenly assume that the signing community came about because of a "need", the need of those deaf/hoh people who have not been as "successful" with hearing aids, implants, oral approach, etc.

This is not necessarily true. I myself was a successful oral hoh child. I speak well. I have access to both worlds now. And I am fortunate because of it. I can say the same for both my boys (hoh and deaf). They are truly lucky because they will meet people from all walks of life, deaf, hard of hearing, etc.

There are countless stories of hoh/adults who were fortunate enough to find the deaf community. Generation after generation has the same story to tell. (Including my oldest hoh son who is 15). And unfortunately, there are too many stories of those who have not had this homecoming experience.

Many hearing parents/professionals do not recognize this type of isolation as a problem which is really unfortunate.

Sue

Drolz said...

Hey Jodi,

Hope you're feeling better! Whoa, you want me to take over this thread for a bit? That's like me giving Darren the keys to the car. :)

Seriously, everyone's doing a great job adding their two cents. I'm enjoying this.

MK, you're right, no one can tell a CI kid to go ASL anymore than telling an ASL kid to go CI, I don't have a problem with that. (Although I do appreciate Sue's emphasis that it doesn't have to be either/or.)

My original concern was dang, it's bugging me how hard it is to find same-age peers for my own son.

As far as the CI goes, my thinking is like this:

1) Those who love it, great. Whether or not they want to join the signing Deaf community is entirely up to them.

2) Those who hate it, no problem. There are alternatives and they'll find them.

3) Those who are somewhere in between, I can't help but wonder.

My fear about the CI a long time ago was that it would turn deaf kids into hard of hearing kids. In essence, a whole new generation of kids who are not quite hearing and not quite deaf. That's a whole 'nother story right there. As with the ASL kids whose parents need to be wary of how much access they really have in the classroom, these CI kids most likely need the same kind of support.

Ah, I'm rambling now. All I can do is point at Sue and say "what she said." But thanks everyone, I really appreciate where this discussion has gone and am learning a lot. :)

MKChaikof said...

Sue,

But the deaf community did evolve because of a need. You yourself say, "Many hearing parents/professionals do not recognize this type of isolation as a problem which is really unfortunate." When any of us are drawn to a particular group of people, it is because we can relate to them. That is certainly fulfilling a need. My point is that my girls are not isolated. They do not have a need to find the signing deaf community. Whether it is a good thing or not is not the point. There is so much I'd love to be involved with myself, but there is only so much time. My girls lives are full and fulfilling. They do not have time, and they are not going to give up something else in order to make the time because they don't feel the need to do so.

Candy said...

It's clear that every deaf/hoh person (including those that have implants/cues/etc) are drawn to people/community that mirrors their own. For example, Rachel says the deaf community that she feels "home" to is her CI Community. It is, thus, a natural "need" that everyone of us feels drawn to based on whom we feel comfortable with. I can attest to that, having seen how HOH people tend to be drawn to each other, deaf parents with deaf children tend to be drawn together based on commonality. Every one of us have our own experience and perceptions that make each one of us have this "will" to go into the direction that we all do. I have mine and there is no way I can say that my experience would work for others, or how I choose to live my life is the best for others to follow. It isn't.

Because of the diverse nature of being deaf at various level, the nature of being deaf itself might be the reason for those varieties to eventually come together. Not everyone will but, I think we will see more of it.

Time have changed, we're all so busy with our lives. Thus evolution of deaf community will be a result of many factors. So, my conclusion: phased Out? Nah. More inclusion from all deaf walks of life? Yea, I think so. Already seeing more of that now than ever before. Like I said, we will see. A different generation with different views may change the deaf community to an even much more open community. Who are we to deny what can or cannot happen in the future, we don't know. We can only guess. Years ago, it was unheard of (my perceptions on my parents culture) to see oral and signers mingle closely together in functions, now you see more of that. Already, there are implantees involved in the deaf community.

Valhallian said...

MK.

I feel the need to reply with an "au contraire" to a couple of your comments. But I would like to address another matter before I get into that.

You are absolutely right, that from my own personal experience as an oral person that did not have a CI. Heck, I don't even use a hearing aid and havent used one in years and yet I can still communicate with hearing people effectively enough on my own to be able to succeed in the hearing world.

But when you say. "Neither can you understand how well she hears or how well she fits into the hearing world based on your experiences, especially if you are a deaf adult raised orally without a CI." That is where I say 'Au contraire", while I may be as deaf as a snake, and don't even care for any hearing abilities whatsoever at my end, I do indeed understand how well she can hear or how well she fits into the hearing world. While I do not rely on hearing whatsoever, I do understand how well one can fit into the hearing world. When I was in elementary school, junior high school, and high school, I happened to be quite an athlete. It was my athletic ability that allowed me not to be a "wallflower" because it gave me the confidence among my peers. For example, always being chosen first when it comes to picking teams during recess does wonders for your confidence. I fit into the hearing world very well at this time so don't try telling me that I don't understand how well she fits into the hearing world. It can even be done without the audiological sense.


Then for you to tell me that I don't understand how well she can hear. Oh please!!!! I spend time with hearing people on a daily basis my entire life so I do understand how their hearing is a big part of their lives and I do understand how hearing benefits them. All I need to know about Rachel, is to simply somewhat think of her as "a hearing person" and there you have it, I do understand how well she hears.

Additionally, I have a dear friend that comes from a deaf family and she is hard of hearing, she can talk on the phone, etc and she could do anything Rachel could do in the audiological sense, if not more. While she is hard of hearing and can hear this well, she actually calls herself deaf. Its easy to see what she can do with her hearing and what I can't do and I see her several times a week. That also can tell me how well Rachel can hear.

I am not saying its a bad thing at all, but I had to respond to this when you say "especially if you are a deaf adult raised orally without a CI" you actually somewhat offend others like me when you say this, because I actually understand this as well as you do, if not better, even if I dont even know Rachel personally.

The bigger "au contraire" is where you said, "But the deaf community did evolve because of a need." I dont know if the word "need" would be the right word, but if it were, it is significantly more than that. Instead of elaborating on this further, I will keep an open mind for now and end this by asking you a question.

Are you also going to state that the black community evolved because of a need?

MKChaikof said...

Valhallian,

Perhaps you can understand more than most what life is like for Rachel. However, what we constantly hear from others is that they know what it's like because they grew up oral. No matter how many times we point out that growing up orally is very different for profoundly deaf children today because they can hear so well, most don't seem to understand that. So, if you can, then I am pleased that there are some who can. Maybe you can convince the others.

As for your last question - The deaf community grew out of a need to find those with common ground, that is those with whom they could communicate well and with whom they shared similar life experiences. Deaf people came together. If you don't like the word need, then substitute desire - a desire to be with those with whom they were comfortable.

However, there is a major difference between blacks and the deaf - Where many in the deaf community have sought isolation in their own schools, their own clubs, and even their own neighborhoods, blacks have fought to be an equal part of the world. They have fought to attend the same schools and live in the same neighborhoods as whites. Yes, there are parallels in terms of fighting for equality, but the two issues are very different. The deaf fought to have in Gallaudet their own school and to use their own language that is separate from the mainstream. This is the opposite goal of what blacks have fought for. The deaf have fought for separate but equal.

kim said...

Valhallian,
Thanks for expressing that so clearly to MK. :-) As a 'deaf' adult with progressive deafness who doesn't yet have a CI, I think I understand hearing better than most hearing folks. I was not only raised 'orally', I was in fact a hearing child. I know what it's like to have normal hearing, profound hearing loss and everything in between.

I consider the hh/deaf 'my peeps' mainly because of our shared experiences of hearing loss and all that entails. My involvement with the hh/deaf community satisfies many needs-- but mainly a need for information. This is not unlike MK's attraction to her Mothers of kids with CI's group. There are times when it helps to talk with someone who actually GETS IT.

The hh/deaf are a community, not a culture. Big difference IMO. My hh/deaf friends are great friends, but I have some close hearing friends who I share other interests with--a love of opera, gardening, books. . .


I do feel somewhat qualified to have an opinion about how I would hypothetically raise a deaf child if I had one.

Rachel is an adult and can decide for herself how she wants to manage her deafness. I have several friends with CI's. Some sign, some don't. IMO those who sign and speak fit in everywhere better than those who only speak or only use ASL (which is admittedly rare among late-deaf organizations, but there are a few out there who rely totally on ASL and quit speaking.)

kim said...

I would also like to add to Rachel that you would probably find commonalities and acceptance among the late-deaf, deaf, hh communities and organizations like ALDA and SHHH (now HLAA), since they tend to support CI's and CI accommodation issues. Even though you aren't late-deafened, it's not a prerequisite to have lost your hearing late in life to be a member of ALDA. Basically you just have to be an adult with some kind of hearing loss or hearing issue, such as Menieres. Many of our members in ALDA and HLAA were born with hearing loss.

Hearing is hearing said...

First of all, the editorial/analysis mentioned(it was not a study, really, as it had no data of its own) used not only extremely outdated data and equipment references, but did not separate children into success categories based on their methodology, parental involvement, age of implantation, and so on, which is how more recent studies have been able to distinguish the success rates. This is telling, because the sim-com and ASL popularity of the 70s, 80s and 90s would certainly create skewed stats and "failures" in data of early cochlear implants. Even today, I see lesser results from those who choose not to follow the path of best practices of CI habilitation (focusing on listening and speaking until one is on par with hearing peers). I find it humorous given that, of all the parents and kids which I've met with CIs (and, at this point, it's dozens and dozens), I haven't met anyone who didn't actually function quite "normally," indeed, except for a couple of children who are developmentally disabled. And even their language was considerably more than had been expected. Stating that only 4% are "fully functional" is not only inaccurate, but ridiculous. The scientists are so successful now that people are moving beyond the question of "are they hearing" to "how well can we map the CI so that they hear music better." These are lofty goals that wouldn't have been considered a decade ago. Children implanted by 12 months MATCH the language growth rate of their same aged peers. (Dettman et al, Ear and Hearing, April 2007). Children implanted between 12 months and 3 are only slightly behind with appropriate therapy. There are multiple studies showing that the current generation of young implantees is far surpassing expectations.

There is often no desire on the part of implanted kids to participate in any sort of Deaf Culture. I guess the only people bothered by this, really, are those who ARE in DC. The rest of us shrug out shoulders and know that the need will usually have to pre-date any interest. Yes, there are a few hearing people who develop a fascination, but in general the DC is based on the shared language. Many, many children who are born deaf today will share languages with their families and community-- spoken language. With ease.

My children are mostly indistinguishable from the hearing kids, except for the things which stick on their head. I don't just wish that-- I know that, based on multiple tests and experiences and comments over the course of many years. While some may quibble about whether they should be called functionally mildly hearing impaired or not, I say... 30 years ago, would most mildly hearing impaired persons have joined deaf clubs or learned ASL? I highly doubt it. I know it's painful, but I'm with MKChaikof. I stopped getting printed newspaper long ago. It is perfectly acceptable for my parents generation to subscribe, if it makes them happy. But my kids have no interest. Out of curiosity, maybe someday they'll read it at the library or ask me to dig out copies of the college newspaper that I edited. Or, maybe they never will. It will be up to them.

I wish no ill upon those who enjoy the DC and hope that they continue to get benefit from it. I do feel sad for those who will not be happy to see it dwindle. And I hope, for their sake, that they can connect more easily with things like Facebook and the internet to make up for what is lacking. But please, don't insist that all of our implanted kids need the DC, will come running to it, will be scarred by missing out on it, etc. People need people; people need language. What language that will be... is up to them.

Anonymous said...

Vallhalian, most definitely the deaf AND black communities evolved because of need. And yes, there are cultural aspects to both. And there are far more black people than there are deaf, living in every locale in America and the world. Not to mention that if you are black, unless adopted, you will likely have black parents, black grandparents, and probably a whole bunch of black friends at church or other places. Not so of all the deaf (whose culture is MORE based on need because of that isolation). But the similarity ends there because being black is a variation on human skin color and doesn't necessitate any educational/disability problems other than those caused by pure prejudice, whereas being cut off from the communication method for more than 99% of humans (speech) one IS cut off. IF we were all born deaf-- if all humans had no sense of hearing-- then we would not be having this discussion, right?!?

It is scientifically likely that most deafness will not only be mitigated by CIs in the future, but cured. This is a loaded word which appears to conjure up bad images in the minds of those deaf who don't need cures but do need disability benefits. This deaf culture will become smaller, and they will obviously continue to fight it. The individuals who welcome CIs and are happy for children who get them-- and don't insist that they live like them-- are the ones who will be respected in the next generation.

Candy said...

Hearing is hearing said: "And I hope, for their sake, that they can connect more easily with things like Facebook and the internet to make up for what is lacking"

What is that supposed to mean? Many deaf friends of mine have FB and many have friends in excess of 300 or more. I just recently joined last summer and I (I, being my birth name not my blog name) have over 180 friends. Deaf people have great networking system across the nation and often times abroad. So...there has been talk that FB is taking place of deaf club, it is the place where one can touch base with each other.

I'm scratching my head...I don't see any differences. Wow, we're all people! really! There isn't much difference with all of us after all. ;)

Dianrez said...

To Melissa: re. your comment "However, there is a major difference between blacks and the deaf - Where many in the deaf community have sought isolation in their own schools, their own clubs, and even their own neighborhoods, blacks have fought to be an equal part of the world."

This is an example of the hearing parent's assumption that Deaf Culture is of people wanting to be isolationist, banding together because people don't accept them, in other words, as a defense to deprivation. It is also an example of "not getting it."

Deaf people have fought as black people did for equal opportunities, especially in access to education, to understanding through accommodation, and in employment, just to name a few. Just as black people did, Deaf people have banded together to form their own resources, until they were allowed equal access to the wider community. Even at that, we still retain the historically black universities and Gallaudet University, as well as the associated cultures.

What defenders of Deaf Culture are trying to say is: don't underestimate the richness, empowerment and desirability of this part of humanity.

Valhallian said...

When you say, help convince the others, I learned long ago that you can lead a horse to water, but you can't make the horse drink it. It is not my intention to try to convince people, but more of presenting facts and let them convince themselves, just the same way a horse would convince himself to drink the water when brought to it.

When you say that Rachel as no interest in learning ASL, I am ok with that as that is her choice. However, it was a few months ago, if my memory serves me correctly, considering the fact that I read many blogs, I thought I read in one of her articles or comments that she had some type of developing low vision.

If I am wrong, then please disregard this section of the response as I do not have to time to go back and read all of her blogs to look for that, or check out all the other blogs where I may have read that to verify this. She is a wonderful writer as well as I enjoy reading her articles. I don't agree with them all, but that is ok too. But in the event that she does have some type of low vision and some of them do lead to blindness later in life. If she does not know ASL, how is she going to be able to communicate if she does unfortunately become fully blind and the CI happens to not work in an occasion? She's blogged about the occasions when the CI did not work. That's my only concern when it comes to her and ASL, something to be able to fall back on if it ever becomes necessary. I have several deaf friends with low vision and ASL is a must in these people's lives when it comes to two way communcation as they do not have the hearing abilities to rely on hearing and speaking alone, as CIs were not available when they were young.

As for how the deaf community formed, it is more than just the word need, its the shared values and experiences, its the history, its the passion, and much more.

However, a keyword that should also be used here, is also what the black community also experienced in past history and still do to this day in many cases, and it is a huge factor in what brought them together as a community.......oppression.

Now before I get into the details on the deaf aspect, let's look at your comments in regards to the black community. While it is true that they have fought for equality, which is what many deaf people are trying to do as well. Granted, they have fought to be in the same schools as white people and live in the same neighborhood as white people. There are also those that prefer to be separate for their own reasons.

For example, when it comes to schools, let's look at Grambling State University, Howard University, Stillman College, Tuskegee University, and many more. Let's not forget the one that is practically in your backyard in Atlanta, Morehouse College.

Is this a bad thing? Of course not, and its ok for them to do that, but yet they still want that right to equality, and they do deserve this equality. This should also apply to deaf people too, so why is it a bad thing to want to have Gallaudet University? It really isn't, although it was actually founded by a hearing person as I understand it. This concept should also apply to the deaf community here.

Many black people also have a preference to living in black neighborhoods, and that is not a bad thing either. They should have the choice of deciding wherever that want to live, whether its a white neighborghood, a black neighbor, a neighborhood of varying nationalities, etc. So what is wrong with deaf people wanting their own neighborhood as well just so that they could have the same choices as these black people too?

There are none at the moment, however, there used to be one. While I am not a deaf history buff, but I beleive it was in the 1600s and 1700's where there was a significantly large number of deaf people lived in Martha's Vineyard, which is an island that I am fairly sure you are familar with, as if my memory serves me correctly, you used to live in Massachusetts.

Signing was not only done by the deaf people there, but it was also used by many of the hearing people that lived in the area as well.

During these days, deaf people held successful jobs, such as being newspaper editors, printers, teachers, etc. Surely, you do realize that the spectrum of job occupations were rather limited back then as opposed to today. So what changed all that you may ask?

I am sure that there are many factors that led to this, but the two biggest ones of them all was actually A.G Bell, (I am referring to the man, not the organization here)which I won't get into in this response (as that is another long story) and the 1880 Milan Conference. This event, that was completely decided by hearing people alone, aside from maybe one or two deaf people that attended. It was purposely planned this way, not to invite deaf people to this event otherwise it would have been utter chaos and this event would have failed.

This one event alone, my friend, changed deaf history and led to years and years of oppression. Deaf schools that used sign language and had deaf teachers were suddenly changed. Deaf teachers were fired. Sign language was tossed away for the oral method. You being familar with AVT programs across the country, I'd imagine that you are actually familar with St. Joseph's Institute for the Deaf, that actually started out as a sign language school back in the 1800s, years before the Milan Conference.

When you say that deaf people want to use a language that is separate from the mainstream. If this 1880 Milan conference never happened, this language would not be as separate as it is now, as that was proven in Martha's Vineyard back in the 1600s and 1700s, where both deaf and hearing people used it effectively.

Part of that oppression was the fact that they had their natural language snatched away from these deaf people. I realize that CI and AVT does make some deaf people learn to speak and listen easier than 20 years and more ago. But you need to realize that before that there were many many oral failures when it comes to deaf people for a variety of reasons, but guess what? There are also a good number of CI AVT failures as well. I know you know that it is not for everyone and the are many important factors in the success rate, having intensely involved parents ranks among the top of these reasons and you were always there to teach both of their daughters, hence the reason for their success in speaking and listening and I applaud you for that.

Rachel is the model spokesperson for the CI AVT industry and kudos to her for that. I do know from personal experience what it is like to be brought to places as a spokseperson to show people that deaf people can indeed speak, as I did that myself well over 30 years ago, showing hearing people that deaf people can be oral. I still vividly remember giving a presentation to an audience full of doctors and doctoral students at Washington University back in the early 1970s when I only 7 or 8 years old. My only regret was not saying that it did not work for everyone and I was also too young to realize this too. However, I am fairly confident that Rachel does state that CI AVT is not for everyone either, at least I would hope she doesm when she gives her presentations as a spokesperson. As it would be more important to her and to the CI AVT industry to increase their success rate percentages by looking into many factors before deciding who should qualify and who shouldnt, as opposed to taking in anyone that wants it. I read earlier about her trip to Australia as a spokesperson. (beautiful country and I was just there for a 4th time for two weeks back in October)

There are many of those others that beleive what they are told, not getting the full story, etc. and unfortunately not as involved with their CI child as you were in many cases. I realize that there are those that may have been as involved, but the child still fell through the cracks for other reasons aside from parental involvement. There many occasions in the past when many deaf people were basically just dumped into oral schools and there were very little parental involvement. Many deaf people in the existing deaf community were also among those that fell through the cracks.

While slavery may not be freshly in the minds of current black people, (it would be natural if it were still in the back of their heads) as odds are that no one still lives from the days of slavery.

This particular type of oppression in schools when it came to oral education for these deaf people that fell through the cracks, which number in the hundreds of thousands, if not millions, that are still alive today and this is still very fresh in their minds....HUGE DIFFERENCE!!!! I am not trying to downplay the slavery issue in the past, but just making a point here.

However, would be understandable if segregation is still fresh in the minds of many black people today, and there are still millions out there the lived through it and are still alive. I would not blame them if it its still fresh in their minds, becuase I can understand it completely, having seeing many acts of oppression myself, and much more through my deaf friends that do not have the speaking or lipreading abilities that I possess.

But back to one of the points of oppression. If it weren't for that 1880 Milan Conference, ASL would be significantly more acceptable than it is today. Although it is skyrocketing in popularity when it comes to ASL classes in schools and universities. Why is that? I would like to think that that a big reason is because deaf people helped to fight for that. Does this mean we want to preach the "separate, but equal" concept that you so eloquent put it? The answer is no, not in that manner.

It is my understanding that your daughter is in college. While she may get along with hearing people perfectly ok, a lot of that will change when she enters the working wolrd after college, aka the real world, the rat race, etc. It is a dog-eat-dog world out there in many facets of the real world and there will be occasions when her CI will indeed be used against her by hearing people. Rest assured of that. I can 99.99% guarantee that.

The only way, as it is right now, that deaf people can decrease that is to actually have cochlear transplants where no one would have to know about the "former deafness" as that would not be visible to the naked eye, but that technology isn't around yet. Altho, it won't be too long before that comes around with stem cell research and the like.

I am not trying to come off as a bad guy here, but that's reality. It even happens to people that have been able to hear for 30, 40, 50, 60 or more years and then they lose their deafness. The attitudes of hearing people around them often change.

The word "deafness" changes many people's attitudes, both deaf and hearing people, and that needs to be addressed. The best way to address that is to have all kinds of deaf and hard of hearing people to band together as a closer knit community, regardless of their communication modes and try to change this mindset together.

After all, this was one major way that the black community have become significantly more powerful. That can obviously be seen, especially with a black president elect that well be president of the USA next month. This could not be done if the black community did not make the progress that they have made in the past 40 or 50 years as a black community and my hat is indeed off to them for that.

It serves as an inspiration for me and the deaf community to try to do the same. It is going to take years and years of working together as a deaf community and why wait any longer? If we keep dividing the deaf community into sub communities as it is now, it is going to take significantly longer.

But back to the point, there are more ways that the black community share their culture with each other, such as BET cable channel, their music, their comedy, etc. Its geniunely a wonderful thing and I applaud them for that, but does that mean that they should give up their rights to equality? I can answer that with an resounding no!! You are saying that the deaf community fights for separate, but equal. How is this different from what the black community is doing? They do what they do and does this mean that their equality should be taken away? NO! Why should the deaf community be any different?

Anonymous said...

Quoting Valhallian:

"It is my understanding that your daughter is in college. While she may get along with hearing people perfectly ok, a lot of that will change when she enters the working world, aka the real world, the rat race, etc. It is a dog-eat-dog world out there in many facets of the real world and there will be occasions when her CI will indeed be used against her by hearing people. Rest assured of that..."

I can attest to that. I was born profoundly deaf, wore hearing aids all my life, raised oral, speak well, have two(hearing)college degrees. I'm what speech pathologists would have called 'golden'-- no "deaf" voice. I speak like a hearing person, with full intonation and a Southern accent to top it off.

In employment interviews, a hearing person with lesser qualifications was often hired over me for the position I applied for. One look at a hearing aid, or my request for a phone with volume control, and that's all it took sometimes. Some hearing people don't have the patience, or don't want to be bothered with the hassle of communication issues or the costs of accommodation. The ADA? there are scofflaws aplenty who will use every other kind of excuse.

I was also overlooked for promotions, often working for bosses who were once under my supervision in my job.

Hearing employees got more favorable employee reviews, earning raises, while I got stuck going nowhere with same salary from years before.

I've been in the work world for some 30 plus years, I'm not talking outta my hat. Understand the exasperation? I'm not the only deaf person who's come up against this wall. All those years of speech therapy for what?

That's the real world out there, and parents of CI children are not going to be able to protect them forever. Oppression takes on various insiduous forms, and boy, are they ever so subtle, especially in the work world.

Hearing PREJUDICE still exists out there and there's no glossing over its existence. That is why the deaf community needs to command the definition of deafness, not the hearing. As long as the hearing world continues to define deafness, the deaf (both big D and little d)will never really get out from under that yoke of oppression that arises from prejudice and paternalism.

Now that's off my chest. Thanks to Valhallian for finally bringing that up.

Ann_C

MM said...

Hearing prejudice exists, but two wrongs don't equate that. If you respond in kind, then you set yourself up for more of the same, it's sod's law. By showing you are bigger than the discriminator you expose the bigotry. Some people you cannot change, don't try, it's just a recipe for continued aggrevation. Kill their argument with reason, with humour even. It's hard to argue against either.

However, many arguments are within the deaf themselves and NOT outside with hearing, the level of non-acceptances, and others vying with "My way is the right way yours isn't...", is a lot more damaging to the deaf than anything the hearing can do, who in many ways are neutered via laws from discriminating...

Since there is no way you can, or should, counter someone else's means of living or communication choices. You HAVE to live with these people's choices, or they won't feel they have to live with yours, so the wars go on.

Tony Nicholas said...

The point that people are missing, especially by those who have read my blog, is that, the CI is an evolution in the "oralist" mantra of speech, hearing and integration.

It is simply the latest development in a long line of technological advances. Context is everything, and it is within the medical/ disability model of deafness that led to the CI.

And if you know your history, you will see this. To argue otherwise, only proves don't know your history.

Contrary to some people's beliefs, the CI does not represent the latest advance of deaf people, as better, than those of us who don't hear, speak, etc...

Quite frankly, I find it hard to comprehend such devotion to technology such as the CI - not because I don't understand what they do, etc., and yes I do understand they are useful.

But that this particular piece of technology has been placed on a pedestal. Not only that, the hearing world is placed on a pedestal too!

But to answer Melissa's remark about Deaf people choosing to be isolationist, remember hearing people live in ghettos too. They too are isolationist. Their world is bigger than ours that's all.

Rachel @ Cochlear Implant Online said...

hearing is hearing, you put the words in my mouth about the paper that Dianrez posted.

I was just on a four-hour flight to New Zealand from Australia, and read the paper while I was on the plane and had typed the response.

Dianrez,

Thanks for posting the link to the paper.

We can't just look at the chart and see the numbers. According to the details, "Note that this sample does not separate children by etiology of deafness, age at implantation, audiological scores, or previous experience with spoken language."

So, the point is that we don't know the age of when these children were implanted, how much parental involvement they had, and what methodology they used. So, this specific study is useless. As several others and I've said, there are MANY factors that allow deaf children who have cochlear implants to become fully functioning hearing people.

As I was reading through the paper, I found this section of the paper, page 44-45, under "ASL/ESL Approaches in a Highly Variable Deaf Population - Other Outcomes" to be interesting:


The social and cognitive benefits of timely first language acquisition
are apparent, but there are also important consequences for the development
of literacy and for the ability to access the content of a school curriculum.
Specifically, it is clear in virtually all the studies of deaf children’s educational
achievement that those who have had early exposure and sensory access to a
natural language perform at a consistently higher level, a fact repeated widely
in the CI public relations literature. This group comprises those who have a
postlingual hearing impairment, those who have significant amounts of
functional residual hearing, and those born into deaf families. These groups
tend to outscore other children both in academic achievement and in literacy.
Several factors certainly contribute to these outcomes. First, they have acquired
their first language as a member of some community of users. Bringing all
the concomitant linguistic, social, cultural, and cognitive skills that this implies
to the first day of school provides a significant advantage over those children
who must acquire a first language and many of these aspects of functional
success as a part of the process of schooling itself. .....( continue reading on the paper.)

This clearly states that the ones who are successfully raised with ASL are the one who "have a
postlingual hearing impairment, those who have significant amounts of functional residual hearing, and those born into deaf families."

What about the ones who are prelingual hearing impaired, does not have significant amounts of functional residual hearing, and were raised by hearing parents who have no knowledge in ASL?

Another thing that I'd like to point out is that a teacher of hearing impaired who works in public schools and whom I know personally, used to work at a state deaf school and told me that at many of the parent open houses, only one parent or no parents of her students show up. Also from her experiences in working public schools, when she spoke to many parents about her concerns in their children's development of language, social, and etc, the parents would deny that their children had issues and would tell her that they're just fine, and they refused to listen on how they could help improve their children's development. There's only so much that a teacher can do, but the parents need to do their part. Another teacher of hearing impaired who I know told me that she has had quite a few parents telling her that they want to get their children who are elementary age get a cochlear implant because they will be able to hear and speak right away. She has explained to them again and again, that it's not going to happen overnight, and that they need to be realistic about their expectations, and that they need to provide appropriate rehabilitation. She told them that if they're not going to be realistic about their expectations and provide the support, the children should not get a cochlear implant.

Also, I went to a public high school where the student population was very diversified. Students came from wide variety of backgrounds including those who came from families without values in education and those who came from families whose parents had high paying jobs. One of my closest friends from high school came from out of district just simply because she came from a neighborhood where families lacked their value in education. While the school did provide her a bus to the school which took at least an hour and a half each way, her parents still had to drive her to school and pick her up on numerous occasions because of school activities, needing extra help from teachers, and etc. Her parents were also very involved in PTA and all that parent volunteer activities. She received many achievements and honors throughout the years in high school. On top of this, this student is black and lived in a neighborhood where families did not value in education. What I'm saying is that socio-economics should not be not an excuse. She was able to succeed and go onto college simply because her parents played an active role in her life. Also, when my parents came to school open houses, there were quite a few classes of mine where only about three parents of 25 students' parents showed up.

So, the point is that it's not the professionals' or the educators' fault. Most of them are not spreading misinformation. It's those parents who are not involved.

Vallahan,

Yes, I do have RP. Let me first say something that I always tell everyone - I always think about this proverb, "Today is a gift. That's why it's called the present."

I only think about today. I don't think about "tomorrow" and "what if...." For this reason, I need to enjoy my life and take for granted for what I have which is all the usable vision that I still have, and of course hearing. There are several research studies focusing on treatments for RP, and there are at least a few promising treatments. One of the treatments that is in research studies was successfully completed in phase I clinical trials recently. The treatment did not only halt the progression of blindness, but also helped people regain part of the vision that they have lost. From what I've read in several articles which state that there are many promising treatments in the studies, and according to my dad who is also a medical researcher and has connections, I believe that there will be a treatment by the time when I will need it. If there are no treatments when I begin to have serious issues, I will deal with it then.

If I do become completely blind and if my CIs stop working completely one day, I will deal with it then by perhaps learning sign language or whatever. But, right now, my vision is OK and my hearing is good, and I need to enjoy them now while I can.


" However, I am fairly confident that Rachel does state that CI AVT is not for everyone either, at least I would hope she doesm when she gives her presentations as a spokesperson."

When I visited the Cochlear headquarters in Sydney, I met with the web team to discuss on how they should improve their website. I brought up that they need to create different "information pages" to meet all those different CI users. I told them that need an information page specifically for parents of newly diagnosed deaf children, a page for parents of deaf children who are past the "toddler age," a page for late-deafened adults, a page for pre-lingual deaf adults who were raised with oral approach, and a page for pre-lingual deaf adults who did not acquire any spoken language skills. I told them that for this reason, the expectation of how well these people can use a CI is varied and rehabilitation is different as it depends on the background of the deaf person. So, basically, I made Cochlear aware that there are a wide variety of deaf people and the ability to use CIs are varied, and they need to understand their own personal expectations. For example, pre-lingual deaf adults who never acquired spoken language need to understand that they will likely not understand speech unlike the deaf children who receive their cochlear implants before the age of 12 months, but these deaf adults may be able to hear environmental sounds.

Rachel @ Cochlear Implant Online said...

"It is my understanding that your daughter is in college. While she may get along with hearing people perfectly ok, a lot of that will change when she enters the working wolrd after college, aka the real world, the rat race, etc. It is a dog-eat-dog world out there in many facets of the real world and there will be occasions when her CI will indeed be used against her by hearing people. Rest assured of that. I can 99.99% guarantee that."

While I have not yet entered the real world, I still have faced discrimination as a CI user on numerous occasions while growing up. When I was in high school, I had to switch my math class from honors to regular simply because my math teacher did not want accommodate me and made fun of me as a CI user. The department head of special education told me before I started high school that I couldn't take French simply because I was hearing impaired. I fought, and fortunately, I won the battle and took French all throughout my high school years. In elementary, a few idiotic students have told me that I could join their "circle" simply because I was hearing impaired.

What I'm saying is that I'm aware that I will always face discrimination and iffy situations throughout my life, no matter where I am, but I'm not going to sit, whine, and do nothing about it. I'll cope with the situations when if it happens.

Karen Mayes said...

A very productive dialogue... covering everything from history (need/oppression = culture), education, technology, etc.) We all acknowledge the need to be part of something. Even Rachel acknowledges the possibility to need to learn sign language in the future but right now she is happy where she is now.

It really shows that the deaf community is dynamic and fluid :o)

Anonymous said...

It's an extraordinary dialogue! I did not realize that Rachel has a RP. Although, she's having a pleasure time where she is now!

Life is at risk but with the technology equipments that saved thousands of lives. We should be grateful for this.

I have told my girls that I still have faced many discriminations and I won't let myself down when an iffy situation comes up. For instance, I faced and went through the controversial situation with a speech pathologist who happened to be our neighbor and I have taught my girls an example what this speech pathologist did to me horribly. They already learned from this kind of example. It's a lesson learned. It's a long story.

White Ghost

Anonymous said...

Someone commented here that mildly hearing impaired people will not join the deaf community.

Nonsense. My oldest son is what I would call "mildly hearing impaired". He goes to the school for the deaf in our state. He uses sign language. He speaks well and yes functions quite well. However, it is difficult for him to follow conversations with a group of people talking.

He also has RP! He can understand others who sign as long as the person is not a great distance away.

Sue

Anonymous said...

Ann C,

I can relate to your post. I recently put myself through school and graduated with an associates degree in Health Information Technology. I am looking for work now.

In the some 20 years I have worked, I have encountered plenty of discrimination while interviewing for jobs and even on the job.

I speak well, I lipread well. I function quite well, thank you. But yes hoh people experience discrimination as well.

Sue

Dianrez said...

"What about the ones who are prelingual hearing impaired, does not have significant amounts of functional residual hearing, and were raised by hearing parents who have no knowledge in ASL?"

Rachel, as a poster child to another poster child, I hate to beg the question.

There are many like me, who grew up oral in hearing families, who have somehow managed to develop both oral and language skills completely independent of hearing.

Just because you exist doesn't mean we can generalize from your example, neither should it happen for my kind of Deaf person.

MKChaikof said...

Re Rachel's RP - I think perspective again affects reaction. One of my initial thoughts was thank goodness we had raised her to hear so well rather than relying on a visual form of communication. A push among a coalition of Usher parents and professionals is pushing for earlier identification of Ushers in part for this very reason. In addition, Rachel has bilateral CIs, which will help ensure that she is not left completely without hearing at any time since it is very unlikely that both would fail at the same time.

Valhallian said...

Ann C. - I understand totally where you are coming from. You are not alone, there are thousands and thousands in the same predicament as you are in.

MM - We don't necessarily HAVE to live with these people's choices. There have been many occasions where I purposely choose not to speak and just use sign language with an interpreter for the purpose of making the other person realize the value of interpreters. I could very easily not use an interpreter with many of these people, but I choose not to, for the sole purpose of increasing awareness for the deaf community. That being the case, I am not living with their choice, they are living with my choice ;)

Tony Nicholas - Don't you think its high time that we start putting deaf people on a pedestal too? ;)

Rachel - when you mentioned the proverb, ""Today is a gift. That's why it's called the present." It is the first time I have seen that and I friggin' love it! Cuz I strive to live life as if today were the last day. But I also think about the future as well.

When you say "I only think about today. I don't think about "tomorrow" and "what if...." that is where I would actually have to disagree, If that were the case, you would not be telling the cochlear company in Australia what you would like to see, thinner CI, computer mapping etc, that obviously shows you do think about tomorrow and "what if" People can still live life with the attitude that today is the last day and combine it with the future. I am living proof of that and I am sure there are many others out there. You are one of those people too although you may not realize it.

When you say you're in New Zealand, I presume that you are in auckland on the north island but if you get the chance to visit the south island, be sure to check out Queensland as it is definitely the place for those that like to live life to its fullest ;) It isn't called the adventure capital of the world for no reason.

Sue - you're absolutely right, there are many hard of hearing people that choose to be a part of the deaf community. I see this everywhere and its why I had to chuckle at whoever said that they didn't, because that person has a lot to learn.

MK - the fact that Rachel has RP, I can certainly understand that it may have given you much more of an incentive to utilize CIs and I do hope that she would never encounter the situation where both of her implants fail at the same time. However, I am also a believer in Murphy's law in a lot of ways and would rather prepare myself for it, but thats just me.

valhallian said...

Rachel, I typed too quickly and did not proofread it before submitting my previous post as I am at work but I meant to say Queenstown and not Queensland. Had them mixed up in my head as the Queensland area was where I was in Australia back in October.

Jodi Cutler Del Dottore said...

Um...you all seem to be doing fine without me. Today I was in Pisa, came home to work. Now I have to make dinner and I'll be back. Btw, I'm also dealing with the fact that my marriage is over...so just please carry on:=)Love, Jodi
PS Mephisto (Tony)-I'm coming!!

Jodi Cutler Del Dottore said...

PS. I will say, Valhallian - don't know where you came from...but feel free to stay and come again! Amazing comments:))

Anonymous said...

MK --

"One of my initial thoughts was thank goodness we had raised her to hear so well rather than relying on a visual form of communication."

I understand where you raised her in a proper example, however, this issue is very highly sensitive. Many deaf people with RP have went through some very, very difficult journey. You need to be very, very careful what you said in the front of the RP/deaf community.

White Ghost

Jodi Cutler Del Dottore said...

Ok. I'm overwhelmed and Drolzy abandoned me *smile*
Hearing is hearing - Do I know you? Amazing comment, I'm really learning a lot from all of your comments...need to digest.
Rachel- Rock on, girl with yo mamma.
Kim- Very interesting comments on the HOH community, I always value your perspective and sensitivity with regard to all issues...I'll be back, it's like reading a novel, here.

MKChaikof said...

White Ghost,

As a parent who found out that her two daughters have Usher Syndrome, I can only say that my reaction, being grateful that they can hear and communicate so well via a non-visual method, is one that I cannot fathom anyone not understanding. Those who have Usher Syndrome who rely on a visual or tactile form of communication should be happy that those facing this diagnosis today can have it a bit easier. Any other reaction to me would be purely selfish.

We're now following the research for RP and Usher very closely and fully intend to have the girls participate in clinical trials, especially phase III ones, as we did with Rachel's first CI so many years ago. There is a great deal of promising research for RP, some of which is already in clinical trials. Would those with Usher who are older than my girls not understand if one of these comes to fruition for them, and I say that I am grateful?

Anonymous said...

MK --

Well, you took a huge risk on the clinical trials for your girls. I can imagine that it won't be easy for you to make the risky decision.

I know you took a risky decision for Rachel to obtain the CI when she was one of the 200 candidates in 80's. It's like you "threw a dice."

I respect for you for making some tough and risk decisions. Making a difference is something that you *really* earn a reward for your girls and the accomplishments.

Helen Keller was deaf and blind and she was one of a few luckiest people in the world. She did not live with the medical technology world just like we have now.

That's a huge difference.

White Ghost

Anonymous said...

Just dropping in before going out to run some errands.

Only some 130 hits yet this is one of a handful of amazing posts I've read in the last year. Yeah, turning into a novel, jodi...

I just hope that CI companies begin to get the right info out on what to realistically expect out of a CI, depending on background and circumstances, as Rachel has suggested, because hearing parents of deaf babies too often grasp at straws without realizing it's going to take a lot of effort on their part.

Also adult CI candidates need to understand what to realistically expect from a CI and that they have to do a lot of followup with mapping and practice hearing. It's not enough for just the doctors to say this info, the CI companies need to follow with their marketing programs as well instead of painting a rosy picture over and over.

Ann_C

MKChaikof said...

White Ghost-
The CI for Rachel was not really a huge risk in 1989. Phase I clinical trials are the ones that are run to determine safety. By the time Phase III clinical trials come along, safety has been determined, as it was for the Nucleus 22 in 1989. Rachel received her CI, as it turned out, only 6 months before FDA approval in children. We traveled to NYU and met children who already had CIs. They were doing very well. While the implant team could only tell us at that time that she would hear environmental sounds, we were encouraged by the other children we met and opted to give Rachel the chance to hear.

Valhallian said...

Ann C, you hit the nail right smack on the head when it comes to adults getting CIs. There are those that feel that it could actually teach them to speak when they have never really possessed the spoken abilities to begin with. They think its an 'overnight solution' nut the reality is that it is going to require extensive therapy sessions in addition to the mapping and practice hearing sessions.

I have friend that got a CI when she was in her 40s and she has the spoken abilities and relies on lipreading like you and I. What was interesting was that she got it a few years ago and it wasn't too long ago when we all are were at a DPHH (deaf professional happy hour) where we were outside and she was complaining that she could hear a really loud motorcycle that was distracting her.

But it wasn't a motorcycle, it was actually a helicopter, as her deaf husband that had significant residual hearing with a hearing aid pointed out to her, which made it pretty obvious that she did not attend too many listening practice sessions. She works, she has a family, so I'd imagine it would make it somewhat difficult for her to schedule constant listening sessions with a therapist.

It was something she would have heard on a hearing aid as well and still would not know the difference when it came to helicopters and motorcycles. Extensive listening sessions and mapping are needed to correct this.

However, CIs are indeed much more powerful that hearing aids as she told me on the day that she got her CI activated, she heard something as she entered her house and did not know what it was so she asked her daughter what it was. It was a sound coming from wind chimes that were hanging on the front porch of a house that was down the road and this is not something that she would have picked up using a hearing aid.

that being the case, the CI companies that paint the rosy picture as you say, actually hurts them more than it benefits them and they need to realize this.

Valhallian said...

MK, when you think about it, you saw the kids at the program where it shows successes and that was what probably convinced you do move ahead with CIs for Rachel. I am not saying its a bad thing at all, but do you think you would have thought differently, if that program actually introduced you to children with CIs that actually failed the program and are no longer in the program. We both know that pigs would likely fly before they ever show you or other parents those kids that fell through the cracks themselves.

You are probably the biggest reason for Rachel's success with the CI. I know that there are many factors that should be included to Rachel"s success but if one would to choose a single most important factor that led to her success. I would imagine that 9 times out of 10 people that are familiar with this process, etc would say that you are the reason, and my hat is off to your for that.

You were the dedicated mom that did everything within your power to help, I'd imagine if something came up where she needed help, you would drop whatever you were doing to help her with her listening skills. That takes a dedicated parent and it is vital that these parents of potential babies getting CIs know this, otherwise we will see more CI kids that fall through the cracks, which would continue to give CIs a bad name.

There are probably single factors that could be taken out of the equation for success and yet it could still succeed. But if you take out the committed parents factor, where parents aren't heavily involved with the CI process, odds would significantly increase for failure I would think. Your thoughts on this?

Anonymous said...

Hey Ann_C.! There you go, OU's red girl! Psst, you!

I recalled that Kim, a blogger, was a CI candidate and had to turn it down for a particular reason. It was about the new Baha thing that would not accomplish for some specific reason. Kim, could you please provide some information that your doctor warned you about? I hope Kim will come here to post this, Ann_C. and MK. I am pretty sure that MK knows the difference between the Nucleus 22 and Baha.

I indeed will know that there will be a very, very small CI's transmitter and receiver/stimulator without the wires.

White Ghost

kim said...

Tony said-
"They too are isolationist. Their world is bigger than ours that's all."

Well said. We're all 'isolationists' to some degree. Because the majority of hearing people feel most comfortable around those who speak orally, the deaf/Deaf have to work very hard to fit in, and even then-- after implantation, habilitation, socialization, etc, etc-- they STILL will never bee seen as 'normal'. As MM and Anne both pointed out so well, most of us experience hearing prejudice, even with perfect voices. The majority of late-deafened, deaf, HH are underemployed--meaning they are too often overlooked for promotion and must fight too hard for employment. Unless self-employed we rarely reach our full potentials in our careers. I too have been a victim of it.

I just don't know the answer to this problem.

When a prospective applicant has speech, he or she at least gets a foot in the door before it's slammed shut. Many Deaf without speech never even get that far. ADA laws be damned.

What's a parent to do? Prepare them for the hearing world as best they can? Give them speech and hope? Or forget it? And hope.

Candy said...

Hmm I'm amazed that I continue to learn more things every day.

I am currently looking into this trial for hybrid C.I. w/ digital hearing aid. I don't know if there is a "phase" trial for that or not. And, from reading the comments here, even though I can hear a lot with my aids, I can tell the difference between a motorcycle and a helicopter, even a jet and a helicopter. I think it takes training to do this. This thing where your head turns towards the sound and really tune into it. Like when I'm on the phone I tune into it, but when I'm in a room full of people, it is hard to do that.

This has given me a pause. Pause to remind myself to ASK a lot of question before I actually go for it and to decide if I have the time and motivation to put myself through what I need to do in order to make the implant a worthwhile effort. The thought of being able to hear myself say my S's is something that would thrill me to no end.

All in all, this has been a great read. Kudos to Jodi for starting this thread.

I do want to say something, and I agree with Valhallian and that is, Rachel has the BEST mom she could ever ask for. :)

Anonymous said...

Candy! Thank you! I now remembered it was about the hybrid CI that Kim was referring about.

Kim, please read my comment. Hope you are all well.

White Ghost

Anonymous said...

LOL, Candy, I often can't hear those S's that other people pronounce and yet I have to exaggerate the hiss sound of an S when I do it. God knows...

Some silly sonofabitches swear I sound like a snake, so sue me. :P

Ann_C

MKChaikof said...

Valhallian,

I absolutely agree that parental involvement is critical. I have always said that. Whenever I sing the praises of the A-V approach, it is always also pointing out that it represents a big commitment from the parents, especially in the early years. As everyone will agree, committed, involved parents are critical regardless of approach. Parents who choose ASL have to learn and master the language.

As for the children we saw in NY during our first visit - Rachel was only the 13th child that NYU implanted, and so there weren't that many to see, but we did meet two and had a chance to speak with both girls and their mothers. One, in particular, impressed us greatly, and, to this day, Graeme Clark, inventor of the multichannel CI, refers to her as one of the most successful pediatric CI recipients. Her name is Caitlin Parton, and, over the years, she was featured on "60 Minutes" twice. Early on, her mother became my mentor, and I still count her as one of my closest friends. Caitlin was one of the few who took a similar path to Rachel who was older and thus further along, and I consulted her mother often over the years. I don't have a problem that I saw the superstar because she showed me what was possible. However, I also left knowing that it was not a given and that, regardless, we were going to have to invest a lot of time and effort. No one let me leave believing we'd put the implant in Rachel's head and that would be it.

Candy said...

LOL Ann_C, I know! That is why I don't exaggerate my S's. :)

kim said...

Hi Candy,
I have some info on the hybrid. I qualified for it last Nov. 07, but decided to wait. At that point they were waiting for approval on phase 3 testing. Phase three has already taken place now. The hybrid has been in the process of testing in twenty cities here in the US and in Europe, and the results are promising. By last Nov., they had implanted about 90 people with it, and probably over 100 now,(not sure if this was in the states alone or world wide).

The model I was shown, which was the one used during phase 2 had a separate hearing aid for the low tones. I was told that Cochlear was hoping to gain approval from FDA to test a new model that combined the CI and hearing aid into one unit, since there was no reason it had to be two separate units, even though it had two separate functions. Last Nov. my doctor, Dr. Rubinstein at the Bleodel Center in Seattle, said that FDA approval for the newer model was likely, but that the FDA could be "funny" about things like that so he made no guarantees. So basically when the hybrid is finally out of trials, it will most likely look like the CI with no separate hearing aid-- which is GOOD, because I hate the plugged up feeling HA's give you.

The hybrid CI surgery is done the same way as the regular CI surgery. You are opened up the same way, but the device has a much shorter electrode which is threaded only through the top or the "tip" of the cochlea. I wasn't sure which he said-- top or tip. This way they skip threading into areas where the better low tones are. It's far less invasive than the regular CI in that regard because it doesn't destroy the cochlea. Turn on is about three weeks after the surgery.

As you probably know, low tones help in the understanding of vowels. Of the 90 people implanted by phase two, six had lost low-tone hearing after the surgery. Three had their hybrids removed, and the other three could still hear better with their hybrids than hearing aids, even though they had lost hearing. That was a year ago. I don't know how they're doing now.

When I say they're 'hearing better' the assumption is they were hearing speech better. Since most musical instruments fall predominently in the low tones ranges, most likely their hearing of music was impacted after the low tone loss. Still-- only six people out of 90 lost their low tone hearing. That's an 85% success rate, or 15% fail rate-- however you look at it. But it's also a very, very small number of people, so six losses out of 90 doesn't look that great to me really. And further, none of them have been tracked very long. I have concerns about insurance companies balking at the second implant when someone like me loses more hearing.

My reason for pulling out was simply I got cold feet. The 15% loss of low tone hearing scared me because I have a progressive hearing loss. I don't know about your hearing, but I assume that yours is more stable than mine since you were born with your hearing loss? I am really concerned about losing hearing after getting the hybrid. If someone would lose hearing after getting it, that person would be me, since I already have a predisposition towards losing hearing. I really feel they should eliminate people like me from the trials from the get-go, because no one can know if someone like me lost because of the surgery or lost just because that's what my ears do.

Another woman I know qualified for the hybrid, then lost a bunch more hearing just before it was time for her surgery. She ended up getting the regular implant. Just imagine if she had lost this hearing AFTER her hybrid surgery! She would have had to have had it removed and replaced with a CI. Would her insurance company replace it after that?? I just have real qualms!

The other reason I decided against it was because I suffer from severe and frequent migraines. I just didn't want anything more going on with my head.


Since then a couple things have happened.

1) Oticon has come out with a new hearing aid that addresses my kind of hearing loss with a technology called frequency transpositioning where they take high tones and move them into a mid tone range. I know of three people now who have tried it and are thrilled with what they're hearing. ALSO-- Oticon has taken the open ear fit and added a teeny microphone that fits into the ear, so it might be possible for someone like me with profound loss to wear an open ear fit with the Epoq. I'm not sure about this, but plan to check into it soon. With the new technologies like this, I want to at least try them first before getting an implant, because I still view the implant as a last resort.

2) I met someone last summer at the IFHOH conference who had been 'borderline' qualified for the CI when she got her implant. She said she actually preferred the sound of her hearing aid over the sound of the implant. Gives one pause. Then shortly after that I met someone else-- again borderline qualified-- who said the same thing. I was really happy that I waited after talking to them.

I have no problem going for the CI when the time is right. But it doesn't sound right for me yet. Like you, I still get pretty good benefit from my aids. I hope to do even better with newer aids.

Candy said...

Hi Kim, Thanks for going into so much detail, I really appreciate it. This tells me I need to get into some forum for adults that are interested in getting a C.I. I have been in touch with this lady who is involved with this hybrid trial that is doing on right now (based on what you're saying, it must be phase 3 now then?) She says they are still accepting subjects for this trial. I'm not officially qualified yet. I need to send her my audiogram so that she will have a general idea whether I qualify for it or not. I procrastinate as usual. But, I plan to do that this week or next (oops..procrastinating as usual.) She did say that if I didn't qualify, then I probably would for the regular C.I. I was born with a 55-65 db in my better ear which I do not want operated on at all! And my bad ear was 65-75 db. My db has gone down 10 db over the course of 30 years or so (stable, I think?) It is my bad ear that I want implanted. Like right now, today is my lazy day and I'm not out in public, I have my hearing aid on in my better ear and nothing in my bad ear. So, I know I will be able to live without one, should that happen. I just found out my insurance will cover hearing aids in 2009, and I'm elated. That might be a factor where I might decide not to get an implant but, I figure...my bad ear is BAD, what do I have to lose? When and If I do, I will keep my readers posted. Technology has gotten better and the fact that it is less invasive is a plus. When you said the person liked hearing sounds with her hearing aid, that is one thing that I am afraid of. I am so used to hearing things with my hearing aid. I can hear crickets in the summer time, yet, like you I have trouble with the low tones including Men's voices. High pitch I have NO problem. My daughter loves to sing and when she hits her high notes, it is enough to make me dizzy! Throws my head off balance too! :)

Also, my word discrimination is pretty high for my type of loss, as I was told. I think that I definitely will go for AV too just to be on top of things. I would love to be able to not rely on lipreading, although I might miss looking at some hot stud's sexy lips. haha!

I will see how things are and I know I will ask a LOT of questions before I actually go for it. My insurance covers C.I. as well. so...

Thanks again Kim. :) I might contact you in the future if I have more questions. I know there is a forum for adult within the CI circle, I believe. So, I should join that and get some more feedback.

kim said...

Candy,
The Say What Club has a CI list.

The hybrid is for people with good low tones, not the other way around. Here's an article for you to read. http://findarticles.com/p/articles/mi_hb4365/is_/ai_n29393168

Anonymous said...

Candy,
You do have to find out first if you qualify before making that decision.

Estimating your loss in both your ears with good high tones still intact still makes your residual hearing loss better than my one good ear's. My bad ear's audiogram practically drops off at the bottom, hence why I've never worn an HA in that one. I can hear low tones better, which is why I'm attracted to men's voices, heh.

Was evaluated ten years ago at House Ear Institute and was told I didn't qualify for CI because I still get speech comprehension benefit from the one HA I wear and that sound thru an HA is better than that thru a CI, if the residual hearing is stable. Some deaf people don't qualify because of deformities in the cochleas that would make implantation of eletrodes difficult. That was ten years ago, and a lot has probably changed regarding qualification and CI technology, for all I know.

At this point in my life, I would consider CI maybe if I ever lose the rest of my hearing in the good ear. So far, the loss has been a stable one.

Ann_C

Rachel @ Cochlear Implant Online said...

Valhallan,

When I asked Cochlear for slimmer processors and self-mapping, those are the improvements that I could take advantage TODAY. Basically, I was asking for something that I'd like to have today if it was possible. Although, I can understand why it can be perceived as "a wish for the future." So, I guess that you're right that in some way, I could think about the future. So, the proverb is really not a "black and white" thought.

Yes, I am in Auckland now and will be traveling to other cities. I will definitely be in Queenstown as I've heard great things about the city! I do mix up Queensland and Queenstown too :D .

Dianrez,

The point that I was making is that approaches involved in using signing and/or ASL, does not work for everyone like AV. As an advocate, I'm just creating an awareness that AV and cochlear implants are valuable OPTIONS for those deaf children who have parents who are willing to make COMMITMENTS.

Also, because I have met hundreds who were raised like me and hear and speak well like me, I can't picture myself as a "poster child." I may seem to be a "poster child" simply because I was one of the first 200 children in US to receive a cochlear implant, and I'm one of the only pediatric cochlear implant user who advocate on regular basis online.

This note is not just for Dianrez, but also for others - Cochlear recently launched a new section of the website where CI users can share their personal stories - www.cochlearcommunity.com . Just click on "PEOPLE" on the top right hand corner. You do NOT need to register to see the stories. I would suggest that you all visit the site and read all those various personal stories. As you will see, there are a wide variety of different definitions of "successful story," and they all come from various backgrounds, but there are still several who are just like me.

Candy said...

Thanks Kim, and Ann_C, yup..it's pretty obvious I'm going to have to find out first if I qualify for it, and from what Kim says..maybe I'm not. I never bothered to understand what my audiogram says, I know it's been explained several times. I do not know exactly where I am am at as far as low tones. Looking at it, it looks a bit across the board with maybe a little bit of a dip at the end. All I know is what I was told as far as my db goes. And, what I know (my not being able to understand many low tones.) So, yeah...first things first.

Anonymous said...

Candy!

See, I've learned so much about the hybrid CIs. I have a critical question about the long-run status. That's where people to use the Hybrid CIs for years before their DBs to become deteriorating due to the age. For example, you use your Hybrid car for 10+ years until the car breaks down. Before you face the weigh-in decision whether you go-ahead or not, you need to consider about having the hybrid CIs to be "useful".

I believe Kim's substantial status on Hybrid CIs are pretty small odds.

Sometimes I believe on the statistic relating to any issues that I've looked into and I sometimes believe the facts. At times, it can be B.S.....

Good Luck with your endeavors.

White Ghost

Jodi Cutler Del Dottore said...

HI EVERYONE WHO IS STILL TALKING!!! Unbelievable...I've had a guitar concert with Jordan and a Christmas program with Sofia today...will post on all of this tomorrow morning..Night night to all. (You guyz are so coooooool!)

Anonymous said...

Rachel,
I read somewhere on your blog a thread about the fact that one of your CI's or a processor failed. I don't remember rightly whether you had a processor replacement or if you had to have a failed implant surgically removed and replaced with a new one.

My question is how long did your implant or processor last? And was this technology failure at a certain time an average for most CI users of same implantation age or were there other factors involved?

Ann_C

Rachel @ Cochlear Implant Online said...

Ann_C,

Yes, my internal implant did fail twice. The first one lasted for 13 years, and it happened simply because I had one of the first implants. There was a tear, and where the tear occurred has already been improved since a few years after I received my first implant. I know for that fact because my sister still has a first generation implant, and we were told that her implant is more sturdy because she received it after it was improved. The second failure happened ten months later for unknown reasons, and I just happened to be in the 1% failure group that happens within a year. It varies from person to person on how long the implant lasts. I know quite a few people who has had their implant for as long as 15 - 20 years and til this day, their implants are still going strong. In fact many of them still have the implant with the weaker section that I had with my first one.

I think that all implants are going to fail regardless at some point because it's a mechanical device like a car. While it may seem no fun going through another surgery, the bright side is that we will get a newer and better technology!

Dianrez said...

Thanks, Rachel for the website link.

This will be useful information for those considering or undergoing the CI treatment, but does not help those who want the full picture.

There are successes in every audiological treatment, and there are failures that are never publicized. How many of each are there, what were the reasons for their experience, what were the parameters? How many eventually gave up on the CI to seek more effective means of communication?

People who want the full picture and a realistic expectation are not being informed if all the personal stories are skewed toward the success side.

Rachel @ Cochlear Implant Online said...

Dianrez,

From reading your comments, it tells me that you have not taken the time to read many of the personal stories on the website that I provided because there are quite a few personal stories on this site that have clearly stated that some can't use the phone, some can't understand speech, some still use ASL and/or SEE, and etc. But they all still receive benefits from cochlear implants in some way including just simply hearing the environmental sounds.

Anonymous said...

Success and failure are seen in different ways by different people.

For a deaf adult hearing environmental sounds with a CI, he himself may consider that a success, especially if he's never heard these sounds before. Others who see this same individual may consider the CI a failure because this person can't understand speech or language. Still others will consider the CI a travesty simply because this individual is betraying his Deaf culture roots. And so on.

Success/ failure is based more on subjective parameters with CI usage. Dianrez wants hard parameters like a scientifically based study with specific criteria.

Problem is, there are so many variables involved, such as implantation age, prelingual or acquired, the type of hearing loss, parental involvement, the type of education, followup commitment, toddler vs. adult, and the list goes on.

One would do better to ask what does the implantee derive from using the CI and did the CI fulfil his expectations? Again, it's pretty subjective.

Ann_C

Kim said...

Ann_C,
Dianrez thinks like a scientist. I don't think it's unreasonable to ask for hard statistics rather than personal testimony. It's much easier to see the full picture in black and white when there is some kind of chart.

Anonymous said...

When my son had his first surgery, the Dr and audiologist refused to give any kind of guarantee that it would work at all. Some of it had to do with his age, they were already implanting at age 3 by then and he was almost 6, and some of it had to do with the fact that he had never been able to derive any benefit from hearing aids and his preferred communication method was ASL. Fast forward 9 years to surgery no. 2 - again, based on his history, no-one could really say how much benefit he would get from the 2nd implant, only that at 14, the stats show that for a second implant at age 14, only about 16% of kids go on to understand speech after one year. BUT, my son had done SO well with his first implant, there was a chance that he would do well with the second. At 3 weeks, he was at 78% comprehension, at 3 months he was at 98% and his AV therapist graduated him. My Dr's never gave me any false hope but they were very curious to see how he would do. My son knew that the earlier he had it done, the better his chances and he knew right when he was going in for surgery that it might not work at all and he told me "How will I know if I don't try?"

While he was learning to use his first implant, I used two methods. I used AV methods a LOT and covered my mouth a LOT and he understood that as a cue to listen. Also, if I asked him to repeat what I said, instead of ME repeating it, he usually DID hear me correctly but didn't yet have the confidence to realise that he was getting it. The second method I used was the sandwich method. I would say something, see if he understood, if not, then I would sign it, and then I would say it again. Time consuming but oh so worth it. I didn't sign and speak at the same time. There was always a time during the day where we just spoke and other times, usually towards the end of the day when he was tired, where I signed.

At his speech eval for the first implant, my son had an oral language age of 9 months. His language in sign was about age 9, he was almost 6. When he was 8 and a half, two and a half years post implant, his oral language (no sign, no lipreading, no visual cues) was at 10 and a half years of age. In 2.5 years he had gained almost 10 yrs in oral language. I believe that he was able to take the language he knew, ASL, and use that to learn English. He went into 1st grade reading on a 4th grade level.

I guess what I am trying to say is, every child is different and there is no one size fits all. As parents, we must watch and learn and utilise as many tools as we can to give our kids the same opportunities as hearing kids. Just because one child does badly, it doesn't mean every child will. Also, we must be vigilant and if something is not working, try to find something that will.

Ask any ethically upright cochlear implant surgeon and they will tell you that it is, for the most part, especially with kids, a crapshoot. Humans are, as always, eternally optimistic and hey, if we don't try, how will we know?

Orla

MM said...

You can't measure what is effective hearing, it goes down to personal skills and abilities to make sense of the gaps. Some manage with virtually no hearing whatever or an hearing aid or CI, others can get almost 70% plus with a CI whilst others again get less than 30% still.

If you apply strict criteria to what constitutes being deaf, then I fear many in the cultural area will not meet that in loss degree, I think they know it too, because they have shifted the criteria for deaf culture from loss degree, to background and communication.

Just as Hearing Impaired have pushed their varied loss to be classified as being deaf. You have a medical standard, and a perceived one....One would simplistically assume that being deaf, constitutes a total inability to hear anything at all, but that no longer holds, since culture is an option, in fact you can be hearing and still claim to be a member of deaf culture with no loss involved with that accepted.

This clears the way for CI Users and hearing aid wearers to be cultural too surely ? Perhaps if we forget the culture thing,and just use 'deaf community' then everyone is equal.

I know people who sign every day in deaf clubs that hear pretty well with hearing aids, one wonders how Dianez would class them ? Perhaps the CI focus is to divert away from the realities in the 'Deaf' area.

Kim said...

MM,

I would like to see a chart with various accommodations listed, as well as phone use and musical enjoyment. It wouldn't be hard to do for the late-deafened, and would give us a clear picture of how much benefit people get from the CI. Can you use a cell phone? Or do you still rely on texting? Can you watch TV without captions or is that impossible? Do you go to the movies when there are no captions? Can you hear your doorbell?

As far as success, I think probably anyone who hears better with the implant than they did with hearing aids is a success. If the implant has to be removed because of pain, or if it's not working properly to the point it requires another surgery soon after implantation, then that would be a failure. I know someone who was implanted several months ago. It hasn't even been a year and she needs a new surgery to fix it already, because of scar tissue that developed and pushed out the electrodes. I would call that a failure, though she was hearing well for a few months before the scar tissue started causing problems. I would like to know how often this kind of thing happens.

Valhallian said...

I would imagine it would be somewhat difficult to come up with a mere chart when there are so many different variables. To name a couple....

We all know that it is significantly easier when comparing babies and adults due to the dry sponge and wet sponge concept.

For adults results would different greatly between those who never really heard anything as opposed to one who became late deafened.

I could try to name more examples but unfortunately have to head out to work.

MM said...

I get tired of the endless debate on who is what in the deaf world. Who cares basically ? What is important is none of us are going to move forward because these arguments will always hold us back.

As I stated, culture is not a continual and hereditary issue regarding deaf people, there just are not enough to carry that concept through as a cultural community today.

As the re-invented wheel it stays with those here, and those now to determine the make up and eligibility of it, as new deaf come in, new educational concepts are put in place, inclusion policies, new forms of access, and new means to acquire some hearing does.

None of it really is based on what went before.... the deaf then just did not have that.

The only answer is for us to all accept each other as deaf people in a deaf community, If they want to argue which part of it is 'real', I don't want in thanks, it's got very boring and is highly divisive because they will never agree as it stands...

Who developed culture ? deaf did, and we are ALL to a degree deaf.. and all share the same issues, even if communication is varied. The obsession with titles and labels is very debilitating. Perhaps some feel by driving in these wedges they preserve their own status quo, WRONG ! it just isolates then again.

Dianrez said...

MM, just to answer your question: I'd consider the ASL-using person that hears very well with hearing aids part of the Deaf community. Why? He uses ASL, and he came seeking companionship of other ASL-using people.

If anyone proposes criteria like the above, it will automatically attract criticism and revision. The word "community" is so open to many definitions.

What matters is ease of communication with one another. That requires more than just a language; it requires a certain amount of skill, flexibility, shared experiences and simpatico.

Candy said...

Exactly!! it's the same thing with D an d. It just divides. I would never use it. I am starting to look down at people that make arguments based on D or d (I'm sorry, but I'm being very frank here.) It is just so ridiculous. I am considered a D by many, yet, am considered a d by those that do not know me. See my point?

The argument Tony had over at his site in regards to Jodi's wording of Deaf is just preposterous. Silly.

Kim said...

I agree. Moreover, the D, d and HH divisions only serve to confuse the public, which is already terribly confused about D/deafness and hearing loss.

There's really a lot of overlap among all three. I get that the Deaf have a different culture, but we're really just one deaf community.

kim said...

Valhallian,
I don't see a problem as long as they compare apples to apples and oranges to oranges on their charts. Yes-- it DOES make a big difference what population you chart re the implants. But enough have been implanted by now, they could easily comprise three charts-- one for late-deaf, one for deafened pre-lingual children and one for pre-lingual Deaf adults implanted as adults.

MM said...

So the argument is NOT about who is cultural at all ? It is about declaring your individual status within the whole sphere of loss and communications. Basically if you aren't 'In' then you are out ?

It is the quest eternal of an ID ? Are CI People Deaf or deaf ? Are semi-hearing ASL using people Deaf or deaf ? Dianez appears to state that so long as the experience is shared,then you are 'Deaf', even if you hear, although others doubt CI people fit that area.

But this too is not an exact science is it ? as we can all share the similar experience of deafness, of sign language and even the deaf clubs and educational establishments, I've done it, and been hearing half my life....

So this 'chart' will have to differentiate between which club or school is real too ? In the UK deaf are mostly mainstreamed to a much higher degree than Americans are. This 'shared experience' then becomes a little blurred.

I think the old definition of what is a deaf and cultural person has gone by the board, certainly from where I am standing it changed 30 years ago considerably.

Deaf culture whatever it is (We still don't know as definitions vary by the week), is now hugely dependent on support from hearing, from the CI people, from the Hard of Hearing, from the state, and from charities. Whatever it is, it is not a stand-alone culture that operates independently, it would have considerable difficulty operating at all without the back up stated, indeed culture developed via a hearing decision to force them all into special deaf schools. That gave culture a base to develop..

The irony is, without that back up, then a more 'true' definition of deaf culture would be clear, because they would be forced to develop that culture to help themselves, which is no longer the real case, with all that help to go independent, this is the crux of 'Deaf' debates and why there is some opposition to access that means there is no need for deaf to meet and greet as they did in number, here is one very obvious example.

In part I understand where the hardline cultural deaf come from, since the appearance is to suggest the realities, in many respects they are finding it harder and harder to find reasons for not using access, when they have demanded it for themselves.

They did not understand that, access, means culture would then come under intense fire, from inclusion policies, and now are trying to back pedal in case culture is lost in real terms, if you cannot tell one deaf person from another then that's it isn't it ?

In the UK the 'Deaf' have already lost control over sign language. Culture is now everything for everyone, or, nothing at all... Is that so terrible to contemplate ?

Jennifer said...

I didn't have time to read all the comments but this discussion is very interesting to me. My son, one of set of triplets, was born deaf into a hearing family. He has bilateral CI's since 13 months. There is so much discussion on fitting in and being part of a community. For me, the greatest thing I have witnessed is my son being part of his own little "triplet" community. Before he could hear he was often on the outside looking in at his brothers. This broke my heart. Now, he is truly part of this trio. He is right in the mix of everything. Playing games, talking, fighting. Doing exactly what the three of them should be doing.

kim said...

MM,
When I was talking about 'charting', I meant charting the success of the CI, not everyone within the deaf community.

I see the deaf community as a pie. The Deaf are but one piece. The late-deafened are another. The oral deaf are another. The HH are another. And there are many other pieces. And yes, there's a lot of overlap because you can fit into several categories at once. If you need something to help you hear, if you need any kind of accommodations for your deafness, even if you need these accommodations and are in denial about it-- you are part of the deaf community. MOST of us are hearing culture, even though we're part of the deaf community. The vast majority of deaf people are hearing culture. But there's still a Deaf culture within our community who don't fit into hearing culture. That's how I see it.

We're gonna have the blizzard of a lifetime in a few hours. It's 17 degrees F.- (-8C). We have ten inches of snow in our yard, and they're predicting more plus high winds that will knock out power. I need to get off and may be done here for awhile.

kim said...

Hi Jennifer,
In the past deaf children often felt left out in their own families. I think it would be too much to expect a mom of triplets to take up ASL. I'm happy for your son and you, that he'll grow up feeling included. :-)

MM said...

If deaf culture is comprised of mostly and of erstwhile hearing people, then where is the core of it ? I KNOW there are many at deaf.read and indeed at UK social and deaf sites, where the majority of them are not from the born deaf area.

Indeed the 'non-Deaf' pretty much run everything with hearing ! In that respect it is almost impossible to identify who really is part of the 'Deaf' culture, or what constitutes its membership, also, who takes it forward.

A pie-chart may still give no indication at all, because of these 'overlaps' it is virtually impossible tell. I'd agree there is a very small sector of deaf people who are born that way, it's far from clear what part they are playing in the image of deaf culture, given they are such a minor part of it, other than they are there.

They can justifiably claim they are deaf from the word go, but a culture and community is more than just deafness, we, and they, have already decided profound deafness has no bearing on it in a clinical sense.

What takes it forward is the contribution of all its 'memberships' from the born-deaf variety to the HH.

With these memberships constantly being blurred by the overlaps, time we just accepted we are all in this together. OK (A) is born deaf (B) acquires it, (C) is in between (D) has a modicum of hearing via environmental aids and CIs.

But we ALL contribute to whatever the 'culture' is, and constitute its make up, I prefer 'community' to culture as a term.. I think the point being made is born-deaf from the deaf school areas no longer 'own' it.

We have all adapted it to our own circumstances. Really in 'Deaf' terms this is a huge ADVANTAGE, as it allows for considerable numerical clout to be use to gain access and equalities, sadly we are still neutered by divisions, and demands for lines to be drawn over who is 'In', and who isn't.

We could be a considerable power to be reckoned with if we buried the hatchets. Hence why official systems are more than willing to accept the division by decibel too. Culture, has given them an ally, it helps divide, and division contributes to rule doesn't it ?

Jodi Cutler Del Dottore said...

Can I offer you guys a cup of cappuccino? *smile* Jodi

MM said...

Never drink coffee lol It's an American import I don't agree with :) I think you blotted your copy book by throwing our tea away in Boston...... :)

Jodi Cutler Del Dottore said...

MM...how 'bout a pint???

MM said...

So long as it is not that American rubbish that passes for beer, I'm game :) three things Brits do well, decent beer, decent tea, and sending our people there to make America what it is lol........ We've got Welsh people on your declaration of Independence, and, who fought and died at the Alamo too, Davie Crockett has welsh heritage.. (Merthyr Tydfil), I met a relative there. If you come across anyone who lives in Los Angeles give me a buzz, I am trying to trace a bloke buried there in 1902 ! I have distant relatives in Pennsylvania somewhere...

Jodi Cutler Del Dottore said...

MM, don't know if you realize this, but I live in Italy *smile* I was thinkin' about a Guinness lol.

Jodi Cutler Del Dottore said...

MM, don't know if you realize this, but I live in Italy *smile* I was thinkin' about a Guinness lol.

kim said...

I'll go for the cappucino Jodi. I can't drink. My head. Storm wasn't nearly as bad as predicted, but I do have over 12 inches of snow in my yard now, plus it's still snowing.

MM- I prefer the word community applies to all of us. Here's a web definition of community--

2a. A group of people having common interests: the scientific community; the international business community.
2b. A group viewed as forming a distinct segment of society: the gay community; the community of color.
2c. Similarity or identity: a community of interests.
Sharing, participation, and fellowship.

Common interests include need for accommodations, visual communication (whether sign, cueing, or lip reading) Most of us enjoy socializing with other 'deafies' There are numerous organizations for that.

I would say several organizations drive us-- Here in America it would be the NAD, HLAA (CHHA in Canada) and ALDA. who continually promote equal access, and the majority membership in all those organizations are deaf, not Deaf. Also we can't forget Gallaudet. Worldwide there are the IFHOH Conferences and World Federation of the Deaf.

One point about Deaf culture. In America, many of those who are considered "Deaf Heroes" of the past were actually oral deaf who didn't use ASL. A lot of them were late-deafened. Some of them absolutely refused to use ASL. Robert Weitbrecht is one, but also Erasmus Smith, Juliette Low, Thomas Edison, Cal Rodgers-- all late-deafened who didn't sign. I could name several more, but don't want to make this overly long. If they had lived today, they would all be considered HH or deaf, not Deaf. In fact, I've been inspired by what deaf people of the past have accomplished! :-) We're in good company.

MM said...

Well Kim, I have ALWAYS Advocated late-deafened and those near deaf have been major contributors, not only to deaf cultural advancement but in running and organizing the deaf group ethos too. It's why I had the bee in the bonnet about deaf history and such, our contributions are ignored as of no account. E.G, Beethoven was ours, he was never a cultural icon, he never knew sign language or deaf culture.

I do sadly see the dedicated sign users further and further isolating themselves into a corner, in the UK again this resulted in the largest deaf and HH charity in the the UK having NO sign users on its senior staff or in ANY Position to organize their own support and empowerment via direct input. It's why myself and the 'Regent' blogger are so determined to raise the warning flags. We do it as much for ourselves as late-deafened as for cultural deaf, indeed all of us.

There are cries via bravado who needs anyone etc, the fact remains many require their translation services, and funds to keep their cultural systems going, technological advances and researches, and non-involvement is depleting that and zeroing the 'Deaf' base.

This affects the late-deafened base as well, because we are STILL unable to convince the system there are 'deaf', we are all 'Deaf' and sign, and the success of that message and image has meant our future is very much bound up with theirs, but they aren't interested in what we need, we are second-class passengers on a cultural train journey...

Perhaps the reason we see drives for a 'CI Culture' or even a 'HH culture' ? the need to separate who is what so the supportive and access systems meet the diversity of need.

All deaf people sign, has destroyed our access and campaigning bases, and pit us against each other as we vie for recognition. Strangely and despite all this hype, they are none better off for it, and are reduced to dependency again, since they have little input or control over it, they are NOT empowered..

I'm wondering if the drive for Independence is stronger with us than with 'Deaf' ?

Jodi Cutler Del Dottore said...

This affects the late-deafened base as well, because we are STILL unable to convince the system there are 'deaf', we are all 'Deaf' and sign, and the success of that message and image has meant our future is very much bound up with theirs, but they aren't interested in what we need, we are second-class passengers on a cultural train journey...

This may change with the addition of AHEAD-Adult Hearing Screening Programs that would include a mandatory hearing check as part of a standard check up. Hopefully, more late-deafened individuals will be identified and assisted. The growth in this population may begin affecting the political situation and awareness...hopefully.
Cheers!

MM said...

I didn't actually find that being ID'd as late-deafened prior to my total deafness, did anything but ID the loss, as there was no recognized system of support. The issue in the UK at least, is that we are literally forced to utilize services designed almost exclusively for the born deaf and sign using sector.

Since the support sector is a conundrum in that it ID's deaf people as needing sign language. erm NOT the case with late deafened initially, they need a hell of a lot more counseling and communication alternatives, which they aren't offered because the system doesn't really understand those needs.

The UK has just ONE set up established in ONE area of the UK that can assist those who are having issues going deaf and need training and support strategies to help them (LINK). And it is dependent on charity ! The most people it could support at any one time is just about double figures (!), and the assist is about 14 days. It's good and helps but you need a year at least to come to terms with deafness after hearing, and to examine your options and which is best for you.

I doubt with the best will in the world that 2 weeks is anything like much use at all, given there are THOUSANDS of people acquiring deafness, and the ipod users queuing up behind them to go deaf !

This potential bombshell of people going deaf (And that doesn't include an older population living longer and hearing less too, are due to start flooding the 'Deaf cultural' areas, they are going to drastically re-arrange it to suit those needs, one doubts culture will come anywhere near 3rd in their priorities.

We will truly be a community, but it will be held together via loss issues and not language or culture. I suspect most elderly people will not have the will or the wherewithal to study ASL/BSL or feel it worthwhile bothering. They will monopolize the support area, and they won't be wanting sign language. Their sheer numerical superiority will force that through too..

But at lest it's lot warmer where you are :) It's about 10 British degrees here (Which is practically a heatwave in our terms lol).... we're only happy when it is freezing and raining... Last time the sun came out here, most Of Britain thought Armageddon had started....

kim said...

I'm not sure how common cueing is in Europe, but it truly enhances communication for all within the deaf community, and can be universally used with any language. It helps Deaf, kids with CI's, the late-deafened and HH. It's not really a language but a code that uses simple hand signs for corresponding phenomes in any language. It's not as popular here on the westcoast as it is on the eastcoast of the US, but it's gaining a foothold because of its versatility. The one drawback for now is its hard to find cueing interpreters.

I see this as up and coming because of the increase in the late-deafened populations, and also b/c of the number of Deaf children being implanted. Cueing is easier to learn than ASL because you use your native language with it, and there are far fewer signs to learn. It's more of a 'code' that one uses simultaneously with their primary language rather than a language in itself.

You're absolutely right about the growing late=deafened population. Statistically 2/3 of all deaf people worldwide have acquired deafness after learning to speak. It's the same with all disabilities. Few people are born disabled. The majority acquire a disability (whether blindness, paralyzation, or deafness) after birth due to accident, illness and genetics. Also many born HH become more deaf over time. In my case I've had progressive hearing loss since my early teens, due ti illness. With baby-boomers hitting their early 60s this year there's been a marked increase in hearing aid sales. You can see the impact on hearing aids themselves. Suddenly they've become really snazzy looking. Oticon doesn't even call their aids hearing aids anymore because of the bad connotation. They call them "hearing devices" Those of us who have worn hearing aids forever couldn't care less if people notice we've got a thing in our ears. All we want is something that helps us hear. BTW telecoil has been eliminated in their Oticons Epoq in favor of bluetooth streaming. Telecoil takes up too much space. Bernafon (maybe more popular in Europe?) is Oticons sister company. They recently won awards for their bean shaped aid. I have concerns that the looks of the newer model aids is taking precedence over functionality, but that's for another blog. When I was at the IFHOH last summer, a lot of Europeans were up in arms over it because the telecoil technology is is widespread in many of their public buildings.

I would love to see cueing expanded because its the only langauge system that could address ALL our needs in the deaf community. And yeah-- the late-deafened need MORE SUPPORT. Kids get their support through schools. We have nothing, except HLAA and ALDA here.

It has warmed up to around 0 here now. Still snowing. I've been stuck inside for days, except the few walks I've taken around the neighborhood. It's quite nice-- and relaxing.

MM said...

We haven't had a white xmas for many years as I recall. But a merry one yes, which I extend to everyone here Nadolig Llawen ac Bleddwyn Newydd Da, which is self explantory really (Albeit a lot less merry if you are a Turkey :) )

kim said...

Same to you--Nadolig Llawen ac Bleddwyn Newydd Da, and all that
;-) This is our first white Christmas in ages. Seattle weather is usually temperate. I'm going out to build a snowman now.