Mishka Zena

116 Responses to “Results of Cochlear Implant Survey”

1. dotkash.com » Results of Cochlear Implant Survey Says:
   January 23rd, 2008 at 11:21 am

   [...] unknown wrote an interesting post today onHere’s a quick excerptIn my opinion, I think its good that CI blogs appear in DeafRead. ###############. Freedom of speech and we have to have both sides “pro” and “con” I know it is hard but keep DeafRead in Neutral position. Not a problem to read about ASL … [...]

2. David Says:
   January 23rd, 2008 at 12:21 pm

   I am against CI because if you have C.I.you cant play sports or go swimming at all because of C.I. think about that before you get C.I.

3. Paula Says:
   January 23rd, 2008 at 12:22 pm

   Mishka,

   You seem to have gotten very interesting responses to your survey. Did you survey adults with CIs as well?

   Two comments that were made stood out:

   “You cannot separate sign language from being a Deaf person.” I completely disagree with this. People who use spoken language and have a hearing loss are still deaf or hard of hearing.

   and the other:

   “I think that hearing supremacists are bullying Deaf people right now. Successful people with CI are not about language and culture of the Deaf, they are about mocking Deaf people in general.”

   Who is mocking? I’ve been reading and commenting on many blog and vlog posts recently and I don’t see anyone mocking. In fact, the majority of parents of CI kids seem to be more tolerant than members of the Deaf Culture community.

   Just my two cents.

4. Paula Says:
   January 23rd, 2008 at 12:23 pm

   David’s comments above are COMPLETELY FALSE. People with cochlear implants can and do go swimming. The external part of the cochlear implant is a processor that comes off, just like a hearing aid.

   CI kids and adults of all ages participate in sports. Why wouldn’t they be able to???

5. jodi Says:
   January 23rd, 2008 at 12:24 pm

   Beautiful results…love the idea of setting up a blog site for all deaf kids! Wouldn’t that be a significant bridge for the future of the DEAF community…thank you, Jodi

6. anna s Says:
   January 23rd, 2008 at 12:41 pm

   Yes, it’ll be wonderful to see a blog set up for all kinds of deaf/hoh tweens and teens. There is one set up in HearingExchange. I believe this one is more inclined for oral kids CI or not. Right? Paula, care to have a say to this one?

   The current generation of deaf kids will grow up more tolerant to each other’s differences. My kid’s Deaf friends do not give a flying **** about the controversy.

   Paula, thank you for correcting David’s misconception about swimming and playing sports.

   Let’s look at the current tweens/teens who are d/Deaf. They are our role models!

   To end this, I read v/blogs that interest me and skip the others. Good to see a wider choice of topics in DR!

7. deb ann Says:
   January 23rd, 2008 at 12:42 pm

   Here is a piece from my blog:

   I am Deaf just as you are deaf and as she/he is hard of hearing/ late deafened, and we are on the same surface. We can be in the unity as long as we respect each other ,and will be always in the same core of DEAFNESS no matter how much one can hear or not. Being in the unity as a beauty leads to a better world or if you would call it as a Deaf community by respecting, reaching each other in any way, and educating. Reminding what’s the most important is that ASL is to keep for the generations to come and have all the deaf/Deaf children (Cochlear Implanted, Cued, SEE, Oral) to develop in ASL beautifully. They can be completed!

   I don’t mind CI users with or without a sign language to be on Deafread.

8. John Critser Says:
   January 23rd, 2008 at 12:51 pm

   I didn’t participate in the survey. But if you want my answer publicly, here it is:

   DeafRead should have two categories on it so DeafRead fans don’t have to stumble into CI blogs/vlogs in looking for their preferred Deaf centric ASL vlogs/blogs.

   For example, there should be a TITLE for all asl vlogs, and a TITLE for CI vlogs. In DeafRead we can click on either blogs or vlogs.

   But now we need to change things and mention which category it is- ASL vlogs or CI vlogs. That way if CI users don’t want to read our vlogs, they don’t have to. And we don’t have to read theirs. We can preserve our own category for ASL vlogs so we don’t feel merged or polluted.

   I’ll still read CI vlogs because some CI users do embrace ASL as a language and do embrace Deaf culture. Not all CI implantees are totally into oralism.

   I hear cheers. But did I? No, because I am Deaf.

   But I do see the “hand waves.”

9. John Critser Says:
   January 23rd, 2008 at 12:59 pm

   One more thing: as a Deaf person we should be interested in all Deaf issues, including CI implantees’ point of view. We can watch their vlogs if they do sign, or read their vlogs. We will have a growing number of friends or associates installed the CI implant on their heads, so we should know more about their world as long we don’t leave the center and become brainwashed in the medicinal industry. We can leave comments on their blogs and share with them in a informative way why Deaf culture is so awesome, why ASL as a primary language doesn’t take anything away from them, or from us, but adds to it. We should explain that no matter what their goals in learning how to talk and to listen are, ASL is in no wise a deterrent to their learning. ASL adds to reportaire, it adds to your skills, visual skills, hand and eye coordination, motor skills, and above all, a richness to culture.

10. A Deaf Pundit Says:
    January 23rd, 2008 at 12:59 pm

    Even though the survey was informal, I think this does show the true views of the Deaf Community. The *majority* of us are slightly concerned, but overall accepting, which this survey illustrated well.

    It’s always helpful to have those type of surveys to help us and others understand ourselves better too, when done appropriately. And you definitely did it appropriately!

    Great job as usual, MZ.

11. Dianrez Says:
    January 23rd, 2008 at 1:01 pm

    The ASL Deaf: “You are missing out on a lot by not knowing ASL.”

    The CI/Oral Deaf: “You are missing out on a lot by not hearing beautiful sounds and hearing people speak.”

    That about sums it up. However, in between there were a lot of beautiful parents, CI people, and ASL People, who expressed richly moderate and appreciative thoughts. THAT alone was worth all of DeafRead itself.

    I don’t think people have changed much in their preferences…I certainly haven’t. However, the sharing was new and badly needed.

12. anna s Says:
    January 23rd, 2008 at 1:10 pm

    Deafread Youth, oh right! Why didn’t I think of that!? I would like to see something similiar to the HearingExchange targeting for deaf tweens be made available to all deaf tweens, signing or oral or somewhere in the between. The term HearingExchange focuses on the sense of hearing which may be awkward to some deaf kids who are Deaf and visually oriented. Paula, Paula, where art thou? Come back! (:

13. DT Says:
    January 23rd, 2008 at 1:10 pm

    I don’t agree with Mr. Critser’s idea of having DeafRead set up into two camps because that will only serve to widen the chasm.

14. Dennis Bacon Says:
    January 23rd, 2008 at 1:29 pm

    Paula and Anna S. .. David’s misconception about CI unable to play sports. Can you prove us that they play in real sports — not PE? No news about them playing with their CI. It is news to me. The talking from CI user said they can’t play due the possible injuries.

15. John Critser Says:
    January 23rd, 2008 at 1:35 pm

    DT: You might be right, it can serve to widen the schism, or chasm, whatever the word is, if we have DeafRead set up into two camps.

    But can we find a way to make it easier for DeafRead viewers to navigate since DeafRead is suddenly populated with CI blogs?

    It’s really about navigation, even about pinpointing our interests.

16. anna s Says:
    January 23rd, 2008 at 1:37 pm

    My son plays ice hockey and wears a helmet. The other CI kid in his school is on the basketball team. At my son’s summer camp, the CI teens talk about being on team sports. One of the bloggers has a son who is a baseball player. sure, they do play real sports.

17. White Ghost Says:
    January 23rd, 2008 at 1:46 pm

    Eventhough, there is neither agreement nor disagreement, the survey helps us to know where it goes…..

    It is great to know that there are pros and cons in the politics as just as we have watched the presidential debates.

    That is a very courageous of you, Mishka, my favorite blogger. \m/

18. A Deaf Pundit Says:
    January 23rd, 2008 at 1:58 pm

    John, all you have to do is read the summary. It gives enough hints of what that blog is about.

    And Paula, I posted my comment before I read your comment. You asked who is mocking?

    I think there are some people on BOTH sides who are mocking. The CI’ers are just more clever about it, because they *tend* to have a more sophisticated grasp of English.

    Take Susanna for instance. She was widely condemned for what she said to MZ. As an attorney, you know that silence is implicit consent. And there was a lot of silence from the CI’ers about Susanna’s behavior. there were some condemnation from the CI’ers, but it was basically just a chirp.

    So you see, to us Deaf ASL users, the silence from the CI’ers on behavior like Susanna tells us that that kind of behavior is condoned and in some quarters even encouraged.

    And by the way, it’s been brought to my attention that Susanna may be Amy, the CI mom. She commented on Deaf Political Junkie’s blog and signed as Susanna, but the blog ID name was Amy’s last name. I find that to be too much of a coincidence.

    What does that tell us about some CI’ers? It tells us that some of the CI’ers are willing to create false identities and false email addresses to promote CIs. If they are willing to go that far, it does make people wonder whether the complete truth is being told about the CIs.

    Unfortunately, there are some of us after seeing years of silence on outrageous behavior, decided to model that. Because hey, if nobody from the CI/hearing community’s objecting to that kind of behavior, it must be okay for us to do that too.

    That’s how some of us think and believe me, there are many of us, as you can see from MZ’s survey, who disagree with that.

    Peace.

19. mcconnell Says:
    January 23rd, 2008 at 1:59 pm

    CI and sports? Sure, why not? Just the same for those who wear hearing aids. *shrugs*

    http://media.www.volanteonline.com/media/storage/paper468/news/2007/12/12/Sports/Silent.Sport-3142375.shtml

20. mcconnell Says:
    January 23rd, 2008 at 2:04 pm

    “…suddenly populated with CI blogs”?

    DR has over 530 blogs and in January appeared some 5 or 6 blogs that are “pro-CI” is classified as “suddenly populated.” Or that last year there were like maybe 2 or 3 blogs who are supportive of CI. If anything, DR need to see another 200 or so blogs that are pro-CI, pro-oral/aural, or pro-cued speech just to “equalize” the diversity of bloggers on DR.

    Now, wouldn’t that be neat?

21. anna s Says:
    January 23rd, 2008 at 2:11 pm

    Deaf Pundit:
    Everyone has the right to post with a pseudonym. There are ASL non-CI ASL users who comment under a false name. I do not see a problem with that.

    In your comment above, you described your group as Deaf ASL users. Do not forget there are Deaf CI/ASL users in the deaf community!

    MZ’s survey is to bring the gap closer, and I feel your comments are to keep the gap the way it is.

    No segregation of blogs/vlogs. Remindes me of water fountains for the colored and white
    Let some fo us promote ASL and some of us promote CIs. No big deal.

    Heal each others’ wounds and bring the gap closer.

22. mcconnell Says:
    January 23rd, 2008 at 2:11 pm

    Correction: “DR has over 530 blogs and in January appeared some 5 or 6 blogs that are “pro-CI” is classified as “suddenly populated”?

23. Deaf friends Says:
    January 23rd, 2008 at 2:11 pm

    hot discuss. I think it is good. We learned a lot about each other which made us more respectful of one another.

24. cnkatz Says:
    January 23rd, 2008 at 2:20 pm

    DeafRead post everything under the deaf SUN! I commend you Misha for doing this.

    DeafRead must keep open all posts related to anything deaf – as per to the guidelines they set up. The guidelines are not set in stone, but cyberwise. The DR team will change whatever when warranted with good reasons. They strive to be democratic and __________________ (add your own words).

    Over the year I observe DeafRead, I notice that the topics wax and wane. More CI’s now and then. Deafhood now and then. Deficit Thinking now and then. Gally or AGBell protest now and then. And much more to wax and wane and back.

    Interesting comments made reflect their inner thinkings and motivations. The more, the merrily interesting.

    Those complaining of CI, post more of your anti-whatever. Those complaining of Deafhood, post your anti-whatever. Just type/sign and post more – that s what is making vblogooosphere critical and important for (inter)national discourse.

25. ChrisH Says:
    January 23rd, 2008 at 2:20 pm

    Anna S and Paul denies that CI used to play sport but I am unsure. My niece play karate without a helmet and he is rough.

    The Most Dangerous Sports

    “But some sports are harder on the body than others. A lot harder. In 2005, the Consumer Product Safety Commission estimated the highest numbers of sport-related injures were reported for basketball (409,799), football (376,115) and bicycling (317,041), says Arlene Flecha, a CPSC spokeswoman. That’s not counting minor injuries that didn’t require medical attention. The deadliest: riding an all-terrain vehicle, according to the CPSC. The sport accounted for 740 deaths in 2003, one-third of which were children under 16.”

    http://www.forbes.com/2006/11/15/sports-injuries-fitness-forbeslife_cz_cs_1114dangersports.html

26. Karen Mayes Says:
    January 23rd, 2008 at 2:21 pm

    Good survey. I did notice the wariness of CIs still existed but the willingness to accept people with CIs into the deaf community or/and Deaf Culture was growing.

    I have to agree with McConnell, the ASL v/blogs still outnumber CI v/blogs.

    Good job, Mishka ;o)

27. John Critser Says:
    January 23rd, 2008 at 2:39 pm

    At least in CI blogs, we can post comments and share our viewpoint, share statistics of CI implants gone wrong, establish a two way street dialogue with them.

    As for my comment “Suddenly populated,” to be broad with this statement, we now suddenly are in the CI forum. Before, it was mostly Deaf centric vloggers and bloggers sharing things about CI implants, now there are waves of CI blogs, whether it be 6 or 20, the population is growing, and sudden as in recent, whether that be this month or last month.

    Originally DeafRead started out as Deaf centric with ASL vlogs. What prompted the CI blogs? Do they need to convince us so we can turn to the medicinal view instead of the cultural view?

    I mean, the medicinal view belongs in the audiologist’s office. If it is about the cultural view what does the CI blogs have to say?

    Alexander Graham Bell. The AGB organization. Their organizational view, if not cultural view.

    If CI bloggers merely wanted us to delve into their world, and praise them, let them delve into our world too and praise us too.

    Let them ask us questions about ASL, or about Deaf culture. We’d be happy to ask them questions in turn, too. I don’t have a problem with that.

28. IamMine Says:
    January 23rd, 2008 at 2:47 pm

    Aw, it was nice of somebody to say nice things about me in a survey.

    Thanks to whoever you are!

    Deaf Culture and ASL will alway stay on DR and it’s a great medium for educating each other.

    What other place was this ever possible?

    We can make a difference here!

29. Claim Blog » Blog Archive » Results of Cochlear Implant Survey Says:
    January 23rd, 2008 at 2:47 pm

    [...] Roughtheory.org wrote an interesting post today on Results of Cochlear Implant SurveyHere’s a quick excerpt…tell more than research, professionals, and parents try to claim. … that is all I ask.  If deafblog eliminate this kind of blog then they are [...]

30. Li-Li's Mom Says:
    January 23rd, 2008 at 2:49 pm

    Brava MZ! And to those who posted and commented for unity in this survey and throughout DeafRead. But I’m also glad it’s a place that allows for dissent on all sides.

    Powerful hand-waving AND out-loud cheering here — sequentially, (not that there’s anything wrong with the simultaneous approach if that’s your choice ) — from the hearing American mom of a Chinese, ASL-using, bilingual/bicultural school-for-the Deaf-attending, profoundly deaf daughter with a CI. (Now, there’s a classification challenge for you).

    Classifying participants could get tricky. I’m trying to imagine a system that compartmentalizes us by audiological results (profound, severe, moderate, etc.), or primary language (ASL, SEE, English), or genetic/family affiliation (Deaf, HOH, CODA, SOD, SODC, HPDC, Pax3, late Deaf, PODA, etc.), or intensity of Deafhood levels (orange, red, blue ?). I feel for whomever has to tag or color-code my daughter by type of Deafness: Deaf + ASL, Deaf + CI, Deaf + HA-she-won’t wear, Deaf + English, Deaf w/crazy-hearing-mom who-sticks-her-nose-into-Deaf culture to-learn-and-ensure-her-child’s-awareness and-acceptance (of and by) the-Deaf-community and-to-have-a-say in-making-the-future for-today’s-Deaf-children-wide-open-and-bright?

    If volumes do get too high and titles/blog names/summaries aren’t enough for us to know when a post is not of interest (that does it for me), I like the topical approach, using each blogger’s own tags to sort blog posts by topic, rather than sorting blogs by type. So for example, you’d have deafpulse-like buckets (about education, about language, about technology, about philosophy, about potty training). Coordinating all those tags, though, might end up being a bit of a taxonomy headache, which would be a good proof point for anti-CI people who claim that CIs cause headaches, and we don’t want to go down that path again.

    ~Beth

31. Jean Boutcher Says:
    January 23rd, 2008 at 2:54 pm

    To keep this blog from becoming intellectually
    dishonest — or propagandistic, for that matter –
    I did not participate in the survey. There were
    many more readers who chose not to do so either.

32. John Critser Says:
    January 23rd, 2008 at 3:00 pm

    Beth- so you are saying that some CI implantees’ accounts of headaches from the CI surgery or implant itself is invalid, or untrue? Tell them that, not me. We didn’t claim that, the CI implantees themselves claimed that.

    Watch this particular vlog. It proves that a CI implantee claimed the headaches, not the anti-CI people. If you can’t understand it since it is signed in ASL, find a sign language interpreter to translate this vlog for you:

    http://jackeyes.wordpress.com/

33. IamMine Says:
    January 23rd, 2008 at 3:06 pm

    What do you mean, Jean?

    You know how MZ operates ever since the beginning of her blogging days.

34. Diane Says:
    January 23rd, 2008 at 3:17 pm

    *High Five* … As long as we are “family” here even we have our own perspective. Thanks for sharing this with everyone here.
    You Rock.

35. Propaganda? Says:
    January 23rd, 2008 at 3:17 pm

    Jean, was there a reason why didn’t you fill out the survey?

    I thought you were friends with MZ, but here I see you backstabbing MZ. She wasn’t kidding when she told me about her so-called “friends” who didn’t like her honest research. I feel bad for her as she doesn’t deserve this.

36. ChrisH Says:
    January 23rd, 2008 at 3:23 pm

    Paula and Anna S,Cochlear implant users should not participate in sports where physical injuries.

    Cochlear implant support

    Tips for participating in sports

    Part of the cochlear implant experience includes exploring the world and the opportunities it offers. For many, this includes participating in a wide variety of activites and sports. We have compiled a few ideas so that you can experience full participation, while keeping your cochlear implant components in top working condition.
    http://www.cochlearamericas.com/Support/365.asp

37. jodi Says:
    January 23rd, 2008 at 3:39 pm

    Mishka,
    This is what happens when bridges are built:
    http://livelaughlovefamily.blogspot.com/ read the post. Jodi

38. Davy Says:
    January 23rd, 2008 at 3:47 pm

    Kiss both my ears.

    Davy

39. Dennis Bacon Says:
    January 23rd, 2008 at 3:56 pm

    Hmmm about sports… not enough information.. I know that CI users shall remove the devices while play but my question is what sports can / can’t they play? Do they have a link to show what sports they can / can’t play?

40. K.L. Says:
    January 23rd, 2008 at 3:59 pm

    ChrisH,
    The site provides tips, and suggestions, but no outright do or don’t except for taking off the external processor when swimming. You do want to take precaution by using helmets etc, but there are kids in all kinds of sports using implants. Having an implant does not exclude you from living your life.

    Deaf Pundit,
    I’m sorry you took our silence for agreement. It wasn’t. I thought that the fact that there weren’t any other CI parents backing her up was a good clue that she was out there on her own. But she was one person, and other than her, things seem to be pretty civil from what I have seen. Please don’t let one person’s “voice” have more weight than all the rest of us.

41. matt Says:
    January 23rd, 2008 at 4:04 pm

    ha i think there is a big difference to participating and/or increasing the level of frustration or anxiety….but whatever works for you that is fine with me..

    i still respect individual opinions and choices..
    altho some folks might be misguided..come what may..

    with the american economy in a dive (i hope not), it appears that the sky is falling..
    with that scenario, i predict that we will see reforms in many arenas including insurance coverages. it might be that CI will only be an option for the wealthy.

    am i worried about the future of ASL? no im not cuz ASL will continue as a language choice and be enjoyed by the masses.

42. Li-Li's Mom Says:
    January 23rd, 2008 at 4:05 pm

    John C,

    I’ve never taken anything remotely like the position you state, and commented strongly in support of the person whose story told of severe headaches on MZ’s site.

    My comment above is about the headache involved in classifying all of these blogs by subject to add CIs to the mix. I’m making a lame joke about the perils of agreeing on a taxonomy, not about someone’s medical problem.

    And I’m an ASL proponent, but thanks for the tip about finding a translator.

43. ChrisH Says:
    January 23rd, 2008 at 4:17 pm

    Dennis Bacon

    Avoid activities that could result in head injuries/serious blows to implant side of the head: football, hockey, rugby, soccer, wrestling, tumbling, and other contact sports.

    Individuals activities may participate in: baseball, basketball, and swimming if the device is removed.

    Outdoor activities that pose a threat to falls or blows to the implant side of the head: climbing (outdoor/indoor) walls, repelling, rope courses, roller blading, roller skating, and skate boarding. However, with proper

    instruction, removal of the device, and use of a helmet these activities may be pursued.
    Risky activities: rafting, tubing, skiing, and diving. Use caution when considering participation.

    Snow/cold/winter activities: skiing, snow boarding, sledding, ice skating are considered risky. Use caution when considering participation.

    http://www.twu.edu/INSPIRE/Fact_Sheets/cochlea.htm

44. A Voice of Reason Says:
    January 23rd, 2008 at 4:26 pm

    Jean, your comment is ambiguous. Care to explain why declining to respond to a survey keeps a blog from becoming “intellectually dishonest”?

45. Amy Says:
    January 23rd, 2008 at 4:37 pm

    Deaf Pundit

    Mishka emailed me for several months as “elizabeth” before revealing that she was Mishka. This is not uncommon (for people to use pseudonymns). In light of the extreme threats I’ve received, it was totally normal. This is not the first time a deaf adult has “revealed” and tried to bring attention to my last name in a public forum. It’s just not appropriate.

    I find it very interesting that people found I was “extreme” in believing that the cochlear implant is largely beneficial and rarely causes side effects, and therefore parents should not be fed information which implies that they are all dangerous and likely to cause all sorts of horrific things such as heachaches and blood gushing out in cups (as recent blogs stated). The vast majority of kids and adults do not have these problems, and it comes across as trying to spread fear. I will not tolerate this kind of spread and will continue to help parents to see the real pros and cons. If I question one side effect in one person… to investigate the reality of headaches and how they occur in people straining to hear… so be it. You can gnash your teeth at me, but the reality remains– the surgical and other risks are extremely low while the benefits for kids are astronomical.

    If it’s extreme to believe that cochlear implants are beneficial for most deaf children, than so be it. If it’s extreme to believe that the spreading of misinformation should stop, so be it. If it’s extreme to think that we should not attempt to persuade by gory stories… then call me extreme.

    Again, I am not neutral, I will not find a middle ground if that ground is to say that cochlear implants are often harmful and dangerous. They are not. They are old, safe technology which allows kids to operate very easily in society. The middle ground I do choose to agree to is the fact that parents have a right to educate and care for their children as they see fit. This is America. As for deaf adults, I would never presume to tell them whether they should or should not get a CI, and that is a personal decision which is up to them completely. I am, of course, in favor of cochlear implants for children who are candidates (according to CT scans, physiology, anatomy and etiology of deafness). That’s my extreme position, based on seeing the overwhelming successes of many kids who have been implanted.

46. Mishka Zena Says:
    January 23rd, 2008 at 4:54 pm

    Jean it is your prerogative to fill out the survey or not, but to imply I’m being intellectually dishonest and propagandizing is downright insulting.

    Amy, Elizabeth is my real name. I do make a habit of using my real name in my e mails

    You mentioned blogs in plural, so it wasn’t just the headaches… it was any negative experience that may deter the parents from pursuing the option of cochlear implants. Aaron’s experience was NOT unusual. To imply otherwise is doing him and other deaf people a grave disservice. Wanna me bring more stories about negative experiences with C.I.? Don’t be disappointed as I do have several already lined up. Unlike you, I am neutral and have nothing to gain by distorting the truth. I don’t go around invalidating Deaf people about their cochlear implant experiences since I don’t hide the truth from other people.

    I don’t want to waste my time with dishonest people. G o . A w a y

47. Karen Mayes Says:
    January 23rd, 2008 at 5:09 pm

    *Cough, cough*… hmmmm….

    I understand where Amy was coming from. We all have our own strong opinions and beliefs, based on what we experience and see. So some might call me an extremist and others may call me a moderate while others may call me a wimp.

    At least, Amy was honest when she came out to us, saying she was NOT neutral… so we have to give her some credit for her honesty. She stuck to what she believed in. Nothing wrong with it.

    Okay, I am looking forward to more series on CIs, cued speech, deaf education, etc…. anything that makes Deaf community pulse with life ;o)

48. A Deaf Pundit Says:
    January 23rd, 2008 at 5:11 pm

    K.L., thanks for your words. I understand your perspective a bit better now, and I hope the same is true for you about me and others.

    Amy (#43), please don’t insult my intelligence. Who would think Mishka Zena is someone’s real name? Common sense dictates that Elizabeth is the real name here.

    Furthermore, there is a huge difference between having an online moniker and an alias. Does anyone think A Deaf Pundit is my real life name? If so, then I can’t help you there, sorry…

    You represented yourself to Elizabeth and to us online as Susanna. Susanna is a name, not a moniker. So it was a reasonable postulation that Susanna was your real name, when in fact, it was not. If you truly were concerned about the threats, you could’ve simply made up an online moniker like many here have.

49. K.L. Says:
    January 23rd, 2008 at 5:15 pm

    Hopefully this won’t add to the flames…

    In my single opinion, Susana/Amy was overstepping in questioning anybody else’s experience. She could have made her point by simply stating that “Properly implanted devices should not cause headaches.” There is no way to know WHY Aaron is having headaches, and that is a very important piece of info.

    Her and my experience with our children, and with what we read and research has us both firmly believing that a properly implanted device is safe, effective and beneficial when used in the right circumstances. I’m not discounting what Aaron has gone through. I strongly recommend he go see a new implant doctor, because something is wrong with his situation.

    But to give the impression that ALL people who get implants will get headaches, blood gushing out of their nose, etc… is also inflamatory. Yes, I know that I don’t have hard statistics to back up what am saying. I wish I did. But the Yahoo circle we are on talks about all aspects of the implant, good and bad. We have never seen any of the horror stories mentioned in either of the cases noted earlier here.

    Mishka, I admire you for what you are doing. And yes, you need to tell all the stories. Cochlear implants are not going away, nor is ASL. All we really need to do is learn how to be more supportive of each other. But please understand that implant failures from unscrupulous doctors is a different issue than implant failures from reputable doctors.

50. Mishka Zena Says:
    January 23rd, 2008 at 5:24 pm

    Thanks, K.L. I asked Erick about his surgeon. Much to my amazement, his surgeon was one of the best surgeons, having performed over 200 C.I. by the time he did Erick’s implant.

    Did I say all? I never implied this. However, I’ll say this again: headaches aren’t unusual, according to some c.i. people I spoke with. There is a vivid story narrated at Jack’s vlog. Here is the link: http://jackeyes.wordpress.com/2008/01/25/the-ugly-truth-of-ci-open-captions-thanks-to-seek-geo/ It’s open captioned.

    Perhaps with the most recent surgeries, they are unusual, especially with children. I don’t know.

51. A Deaf Pundit Says:
    January 23rd, 2008 at 5:26 pm

    K.L., I agree. We should not give the impression that ALL people have horrible experiences from the CI because that too, is inflammatory.

    The truth is somewhere between those two inflammatory statements. To me, the whole thing could be resolved if we joined together to get some hard statistics on this. Hopefully sometime we will do that.

52. Karen Mayes Says:
    January 23rd, 2008 at 5:31 pm

    Which brings me… it seems that the older models of CIs are more problematic than the newer models of CIs? Also, could it be the brains do change as the brains approach the adult years? Etc.

    Many questions.

53. White Ghost Says:
    January 23rd, 2008 at 5:31 pm

    Well, some people think that the survey could be the counterfeit. Perhaps Jean would be the one of them that rejected the CI survey.

    What it annoys me the most is that some companies send us the incommerical survey I am *not* really interested.

    I would not fill the survey that includes the race and religion issues.

    The JD Power Associates survey is the official one. When we brought our new house, JD Power sent us the survey and we took our time to fill it out.

    The survey that Mishka distributed on the CI debated issue. I find it very interesting because the CI users since 1980′s are the *NEW* generation that mobilize support the deaf community.

    I realized that we did *NOT* debate the hearing aids *before* the birth of the Cochlear Implantation came out in 1980′s.

54. Amy Says:
    January 23rd, 2008 at 5:32 pm

    KL, I agree with you regarding Aaron’s experience, and I was really not trying to discount his experience. Let me go on the record and apologize for that, as it was not my intent, but I was upset because it appeared that others would think that was a normal consequence of the surgery. It is disheartening, though, for those of us who have seen so many good stories and have been very involved in cochlear implant communities for so long to hear the kind of story which seem strange and possibly caused by other things (in the case of the blood, I have no idea what could have caused that, besides a very poor surgeon or botched job or both, since I have never seen more than a few drops of blood at the incision site for my kids’ surgeries, even with the old-fashioned, large incision that my surgeon performs).

    Like you, I think Aaron could benefit from trying another surgeon and audiologist, and perhaps get to the bottom of what was causing his discomfort.

    KL, thanks for clarifying for us– my was not to discount one person but to reiterate that the CIs are largely safe and effective.

    Mishka, I know you are really mad at me now, but perhaps you can see that I had a reason to question this kind of issue, as a proponent and advocate for cochlear implants in kids. That’s my real reason for posting. It is never my intent to really change deaf adults’ decisions regarding implants for themselves, or to insist that they should be thrilled to see them growing in popularity. I think that it is only natural that ASL users would want to see more of themselves to converse with. But we have to, as parents, make decisions based on our family, and what we think is best for our childrens’ future education and so on.

    Not sure if this kind of post will make amends with those who were angry, but hopefully it explains it a bit.

55. Amy Says:
    January 23rd, 2008 at 5:38 pm

    Wow, Mishka, I just read you post telling me to Go Away, so I will. I read it after my previous post. Sorry. Again, I have no intent to hide the truth. Never have, never will. I spent a lot of time trying to explain my kids’ stories to you, and never once refused to answer your questions plainly and honestly. I would never be dishonest.

    Don’t worry, I won’t be back.

56. Mishka Zena Says:
    January 23rd, 2008 at 5:54 pm

    Well, after seeing your explanation and apology, I’ve reconsidered. You may come back, if you desire…. with the understanding you cannot dismiss any other Deaf people’s experience again. They have an extensive history of invalidation and oppression. That’s why I got so angry after you tried to ‘invalidate’ Aaron’s story several times. Some Deaf people were indeed experimented and left with tragic results more then you realized. These oops were never reported to the public. However…we see them. We live with them. They are our friends, our classmates, our spouses. They deserve to be heard and acknowledged. I will not minimize their experiences for the sake of c.i. parents who want to promote the cochlear implants. Just like any other medical procedures, there are positive and negative consequences of c.i.s and I’ll cover them both.

57. Dianrez Says:
    January 23rd, 2008 at 5:56 pm

    “I had a reason to question this kind of issue, as a proponent and advocate for cochlear implants in kids. That’s my real reason for posting.”

    Amy, we in the deaf community are familiar with hearing aid dealers, quacks, profiteers, and now CI industry people including surgeons who receive many benefits from the CI industry. I’m sorry for sounding as if I paint everybody with a wide brush, but it is high time we saw some truly neutral, highly ethical, and totally unaffiliated medical experts.

    Just by that statement, you have put yourself in a category that is impossible to give credibility or have much dialogue with.

    This is not to say that there are some who benefited from the CI and have had no side effects. I believe you when you say they are out there. But not at the expense of discounting those who were harmed, did not benefit as much or minimizing their numbers.

    Until we have more information, we MUST give this group a wide platform and credibility for their experiences. They are not experimental subjects or practice surgeries, they are just…people with a right to quality of life.

58. Paula Says:
    January 23rd, 2008 at 6:05 pm

    Well, I’m back here after a long day of working and baking with my young son. To be honest, I find this entire discussion disheartening.

    I do not agree with the comment earlier about silence being implicit consent or agreement. I did not read the original Susanna controversy and only heard about it later on so I can’t comment on that. Any perceived silence was not intentional. I don’t feel it is my place nor do I have time to comment on every post or every blog. In fact, I have purposedly been limiting my comments lately for a variety of reasons.

    The fact that Susanna/Amy used an online screen name, to me, doesn’t really imply that she was being dishonest. I have had message boards over at HearingExchange for more than 7 years and there are over 7,500 people registered there. Only a tiny percentage ever used their real names. It is not uncommon to use screen names online.

    I do understand where Amy is coming from. There has been a lot written online in many forums and websites about the negative side effects and misconceptions about cochlear implants. Some have used it as a scare tactic and I think Amy was trying to counter that. People do need to be aware that not everyone does as well with a CI as everyone else and that some people experience implant failures and/or other side effects. But they have to be put in proper perspective. These instances are outweighed in numbers by the thousands of people who have had great successes and no side effects with their implants. This is not to diminish the people like Aaron who have had problems. People do need to hear stories like his, but as I said, things do need to be put in proper perspective as well.

    Anna was discussing a teen/tween site for kids. I think it sounds like a good idea. My sites are open to anyone. They do tend to attract more oral deaf people of varying ages as that has been my experience growing up and parenting a deaf child. To be honest, my time is very limited with my work and family. I don’t think I’ll be able to participate in any new ventures at this point.

59. Amy Says:
    January 23rd, 2008 at 6:10 pm

    Thanks for the personal note, Mishka, and for inviting me back. Whew!

    Dianrez, I do see how you would be suspicious. My own MIL went to accupuncturists and faith healers in her quest to regain her hearing years ago.

    I hope, though, that I’m not in their category. In reality, deafness is enough of a “low incidence” issue that in fact, cochlear implants are a loss for hospitals and surgeons. They make a lot more on those quick little ear tubes for infections and other routine surgeries. More people have the need for a stent put in their heart than CIs, and more people apparently suffer from that condition which will remain nameless that causes ads for viagra on TV. CIs actually don’t make a ton of money for them. In fact once I suggested that, since more and more are being implanted that we should buy stock (half joking) and my husband said no way– it wouldn’t ever be a big enough business to rake in the big bucks.

    Thanks Paula, love your sites, btw.

60. anna s Says:
    January 23rd, 2008 at 6:13 pm

    Thanks Paula. My kid is signed up in your site. I will encourage some of the TC kids I know to check it out.

    For the Deaf guys who continue to invalidate our stories that our children do play sports, “think-yourself” as in ASL.

    Deaf Mom

61. ChrisH Says:
    January 23rd, 2008 at 6:50 pm

    Anna s

    Are you going to encourage TC kids (Total Communication)to sign up in Paula’s blog.

    Are you thinking yourself as TC

62. John Critser Says:
    January 23rd, 2008 at 6:54 pm

    KL,

    allow me to quote you here:

    “But to give the impression that ALL people who get implants will get headaches, blood gushing out of their nose, etc… is also inflamatory. Yes, I know that I don’t have hard statistics to back up what am saying. I wish I did. But the Yahoo circle we are on talks about all aspects of the implant, good and bad. We have never seen any of the horror stories mentioned in either of the cases noted earlier here.”

    My response: It made me angry to see you say this quote. We give the impression that ALL CI implants cause headaches, blood to gush out of the noses?? You are being clever with words. What’s more, you are “discounting” the experiences of the CI implantees that did experience some side effects, at their emotional expense because they will have read your comments. People who back up the CI industry or are a paid representative of a CI company will never highlight any cases where CI users suffered headaches or other complications.

    One can be a GREAT surgeon but complications still arise anyway. They can do it right, but complications arise anyway.

    Why?

    Because we are human beings. We have fragilities, everybody has a different outcome. Not everybody has the exact same outcome. The heart stops, or the brain builds pressure, or something happens during surgery. Maybe having their skill drilled surgically was more than the CI implantee bargained for.

    It is like asking for breast implant only to have the silicone leak from the breast glands into the other areas of the breast and into the rest of the body. Plastic surgery are done by skilled surgeons.

    KL, PLEASE don’t dismiss Aaron’s accounts of having a CI implant. It happened after the fact, and is related to CI surgery. It is related to COCHLEAR IMPLANTATION, period. I don’t care if the doctor had a 200-1 ratio of success or 200-0 ratio of success, one failure is enough!

    And what’s more, what bothers me is that Deaf people are pressured to have the surgery, as it was in Aaron’s case, and countless others. It’s the parents. It’s the teachers, the audiologists, the CI company representatives, EVEN psychologists who are contracted with CI companies, who do dual marriage counseling and declaring that the other marital partner does not accept CI for the spouse, which shakes up the marriage, and which is OUTRAGEOUS.

    A true story: there was a couple undergoing marriage counseling, in hopes of working out the marriage, they loved each other very much. The husband was against CIs and had told his wife that he did not like the idea of her having one, but later he privately decided he loved his wife so much that he decided to reverse his stance and become more openminded towards her getting one, becoming more supportive.

    But the marriage counselor threw them both a bombshell and told the wife that since her husband originally didn’t support the idea of her getting a CI implant, it posed a big problem and a barrier to them working out the marriage. The husband was shocked and said, “Counselor, I accept her having a CI implant. I now support her getting one. That’s wrong to say that I don’t, at the expense of us working out our marriage.” The counselor retorted back, “No, you did not accept it. IT is a PROBLEM.” His wife looked at him and felt even more alienated from him. She was influenced by this marriage counselor WHO was also contracted with CI companies to evaluate married couple to determine if their marriage was compatible enough for the marital partner to have a CI. And if the partner wasn’t supportive of CI, the CI company contracted marriage counselor would stress that since the marital partner didn’t support the other marital partner getting a CI, that now, their marriage is in jeopardy, that it is not good for them together, that remaining together while one wants a CI and the other doesn’t isn’t a good idea.”

    That is OUTRAGEOUS! That was totally destructive to their precious marriage union, their love, and hurt their chances to try to work it out. Because after that marriage counseling session, things were never the same. The wife is currently processing to divorce the husband. There were other factors and reasons for the divorce, but the marriage counselor who was contracted with the CI company was the final straw that broke the camel’s back.

    So it bothers me when you discount the experiences of people tied to CIs, whether in discussion, in the marriage counseling session room, on the surgeon’s table, whether the surgeon was good (reputable) or unscrupulous. We need to take every account seriously.

    I would have liked to hear this: “Really? Let’s investigate. Let’s research how to make the CI implant failure proof.”

    I don’t know if that’s reality, because every kind of surgery can bring complications of every kind. But this I know:

    The CI implantee in getting surgery must consent to it without prejudice, without pressure. The individual must WANT it, without unanimious pressure from everybody involved- the doctors, surgeons, CI reps, CI advocates, teachers, audiologists, and especially their own parents!

    Kids love their parents and want to please their parents and even do it to gain higher status on society, and we should not take advantage of that.

    They must really want it without the pressure.

63. Amy Cohen Efron Says:
    January 23rd, 2008 at 6:55 pm

    Hello everyone! Good to see some of you again, after a long while…

    This is to response to Paula’s comment (#56)

    Let me say this properly, in the proper format, from a proper perspective. I want to know whose perspective is proper. Sharing the failures and successes of CIs are proper, no? If there is an imbalance of the ratio of successes and failures, wouldn’t it be proper to show the proper perspective of how CIs affect the whole community properly?

    Amy Cohen Efron

64. brenster- Says:
    January 23rd, 2008 at 6:56 pm

    just wanted to share some of my observation:

    First, “I understand where __(name)__ is coming from…” seems to have become a favorite statement all over the blogs and comment sections.

    Second, it’s amusing to see some commenters applauding CI militants for being honest, whereas those same commenters harshly criticized Deaf-militants and/or ASL-militants for being honest.

    You are such funny people. Thanks for giving me a great laugh!

65. Joseph Pietro Riolo Says:
    January 23rd, 2008 at 6:59 pm

    In this comment, I am repeating the need to put the unpleasant experiences that some cochlear implant users had, as indicated by several comments in this blog, in proper perspective.

    It is true that these unpleasant experiences occurred and we can’t deny them. However, the number of them is relatively small when compared to the number of cochlear implant users who do not have any unpleasant experiences.

    I am going to use the report from FDA to illustrate the importance of putting the information in proper perspective. The report is available at http://www.fda.gov/cdrh/pdf/P000025b.pdf and it is for only one specific type of cochlear implant called COMBI 40+ Cochlear Implant System.

    The sample size covered by the report is 188 people, 106 adults and 82 children (page 13-14). Page 15 said that 20 out of 106 adults experienced adverse events or complications. That is about 19% of the adults. The study claimed that all of the problems were resolved.

    Page 16 said that 19 out of 82 children experienced adverse events or complications. That is about 23% of the children. The study also claimed that all of the problems were resolved.

    With this information, we can easily expect that there will be some problems among some cochlear implant users but the number of them will remain relatively small. Without more data, it is hard to come up with the upper estimate.

    Another report that I am going to use to emphasize the importance of putting information in proper perspective is http://gri.gallaudet.edu/Demographics/2005_National_Summary.pdf .

    On page 5, the known information about the use of cochlear implant covers 3,860 students. 316 of them no longer use cochlear implant while 3,544 of them uses it. We can safely assume that those who no longer use cochlear implant may have problems with it or may not gain any benefits from it. To put these numbers in percentages, the former is 8% and the latter is 92%.

    It is always important to know that negative outcomes can happen from the use of cochlear implant but to exaggerate them, to repeat them endlessly and to become obsessive with them are the sure way to distort the whole picture.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

66. Paula Says:
    January 23rd, 2008 at 7:05 pm

    Gee, Amy Efron Cohen, I wouldn’t expect such mockery from a professional as yourself.

67. Paula Says:
    January 23rd, 2008 at 7:06 pm

    Oops, I meant Amy Cohen Efron! So sorry for the mistake.

68. Amy Cohen Efron Says:
    January 23rd, 2008 at 7:08 pm

    Paula,

    Then you need to tell us what proper perspective you are referring about.

    You are using these words yourself first, and I am asking you to define what is proper perspective?

    My comment is to challenge you, and sorry, that you didn’t get my sarcasm.

    Amy Cohen Efron

69. Karen Mayes Says:
    January 23rd, 2008 at 7:10 pm

    I feel sorry for your unrational hatred of me, since you don’t know me. It is my opinion and too bad that my opinion does not mesh with your opinion.

    One can accept and move on instead of bashing.

    Farewell, b.

70. K.L. Says:
    January 23rd, 2008 at 7:14 pm

    John,
    I was not discounting Aaron’s experience. I’m sorry you think I was being “clever with words”. I was trying to sort out where everything went wrong on the other post. If you read what I said, I strongly support each person’s experience, and absolutely believe Aaron’s headaches came from his implant. I just don’t have enough information to know what specifically was causing his headaches. I know that if he is having them, that something went wrong, because that is not “supposed” to happen. Hopefully he can get to the root of the problem so he can be pain free soon.

    Yes, all surgery carries risk. There can be complications. The implant is not right for everyone. But it is right for some. That is all I am trying to say.

71. White Ghost Says:
    January 23rd, 2008 at 7:15 pm

    I want to response to Paula’s comment on #56.

    How would you know that failures and successes of CIs are valid when there is a ratio? Please tell us.

    I read the Dr. Ross’ report on Kim’s blog, Living The Questions: “Thank you, Mishka” I think that Dr. Ross’ statement on Hybrid CI and the Auditory Brainstem Implant (ABI) are the valid report. The ratio is pretty small.

    Here it is: http://www.hearingresearch.org/Dr.Ross/Implants.htm

72. Paula Says:
    January 23rd, 2008 at 7:19 pm

    Got the sarcasm. Didn’t feel the need to dignify your unnecessary tone.

73. John Critser Says:
    January 23rd, 2008 at 7:21 pm

    Perk your ears to what Amy Cohen Efron is asking to define the proper persective.

    Her quote here:

    “Let me say this properly, in the proper format, from a proper perspective. I want to know whose perspective is proper. Sharing the failures and successes of CIs are proper, no? If there is an imbalance of the ratio of successes and failures, wouldn’t it be proper to show the proper perspective of how CIs affect the whole community properly?”

    Incline your ears, and tilt your head, and listen carefully to what the question says.

    I am not interested bashing one another, especially the CI supporters, but I am interested in balancing the scale and weigh the risks associated with CI implants and the success promised therewith.

    Answering Efron’s question only continues the dialogue into an intelligent, informative discussion in the proper perspective.

74. A Deaf Pundit Says:
    January 23rd, 2008 at 7:24 pm

    *chuckles* Well, the sarcasm from Amy Cohen was certainly thick, but it made me laugh. I don’t think anyone can put anything in proper perspective without some statistics showing the success/failure ratios.

    Not only that, but those CI failures also are human beings and they’re paying the consequences for the failure. That is the perspective I have, and I think that’s the proper perspective to have.

75. Mishka Zena Says:
    January 23rd, 2008 at 7:26 pm

    Paula,

    Amy presented a good question. We would like to hear the answer, too.

    So far I’ve seen the ‘success’ stories of C.I. stories. Where are the ‘not so successful’ stories? The very first one posted here, people immediately denounced it as a scare tactic. What proper perspective are you referring to?

76. brenster- Says:
    January 23rd, 2008 at 7:30 pm

    karen, what??? okay, whatever.

77. White Ghost Says:
    January 23rd, 2008 at 7:30 pm

    Mishka –

    Please enter my post #68 to your blog. We just got the new upgraded computer.

    Thanks,

    White Ghost

78. Karen Mayes Says:
    January 23rd, 2008 at 7:38 pm

    Joseph, thanks for sharing the statistics with us… it is a good start and it gives us a general idea. I did notice that the stats were biased though, on controlled groups. I think we all would like to see the national statistics.

79. anna s Says:
    January 23rd, 2008 at 7:45 pm

    Whoa, what is happening? I thought we all are to agree to disagree and support each other wherever we are on the spectrum.

    TC? Well, okay. some comments are not worth responding to, but here I’ll answer as honestly as possible. Codeswitching is one of my areas of expertise when it comes to language. (:

    Glad the majority based on the survey is agreeing to move ahead and be open to each other’s perspectives.

80. White Ghost Says:
    January 23rd, 2008 at 7:48 pm

    Joseph –

    I am glad to see the FDA’s report. Sorry, the Gallaudet report does not enough information.

    We want to see the *real* statistics on the CI’s complications as Karen mentioned above.

81. anna s Says:
    January 23rd, 2008 at 7:52 pm

    success/failure ratio:

    define success?

    voice sounds like a hearing person?
    no need for CART or an interpreter?
    no side effects.

    define failure.

    Cant talk on the cell phone?
    Need to depend on an interpreter in the classroom?
    device failure?

    I know we all have different interpretations of sucess/failure of the implant.

    DP, care to clarify your interpretation ofthe ratio you are seeking? Medical? Performance? What?

82. John Critser Says:
    January 23rd, 2008 at 7:55 pm

    KL,

    Thanks for your humble response. We’re not just talking about Aaron here, but countless others. They’re not just statistics, but real people.

    I would like to know what you, and other parents, and other CI-advocating professionals have to say about the pressure on the Deaf child or adult to get CI implant?

    Are you all going to say “What pressure? No, we don’t pressure our children to have the CI.”

    Pressure is not holding a gun to one’s head to have the CI. It can be in any shape or form. Maybe pressure can be the Deaf child hearing the family, fellow classmates, teachers, and everyone echo unanimiously how awesome it would be for that person to get a CI. That’s pressure!

    Maybe the parent keeps stressing to the child that it would improve his/her life in improving speech skills, lipreading skills, listening skills, and better chances of adapting to the hearing world. That kind of talk is pressure.

    And what if that child doesn’t want it, and feels God made him/her that way, as Deaf? What if the child is afraid of invasive surgery, of complications that might arise, that can happen in any case?

    Any hesitancy, fear, and even feelings that a CI implant is not necessary, that digital hearing aids would do fine is real. And people keep on pressuring in convincing the child that it’s the best thing, that is wrong.

    Do you agree that some children are being pressured to get CIs?

    Do you also agree that some parents control the fate of some young children in deciding for them to receive the implant because they are too young to understand, or to decide? Do you think it is right or if it is wrong?

83. anna s Says:
    January 23rd, 2008 at 8:01 pm

    JC: “Do you also agree that some parents control the fate of some young children in deciding for them to receive the implant because they are too young to understand, or to decide? Do you think it is right or if it is wrong?”

    I beg to disagree.

    When the child grows up, he/she can stop wearingthe implant or have the internal components removed.

    What about those parents who decide their sons to be circumcised. I believe this is a form of child abuse. how would the child be able to regain his foreskin when he grows up?

    I am not too fond of removing something that cannot be replaced.

    Bad analogy? I hope not, ha.

84. Mishka Zena Says:
    January 23rd, 2008 at 8:07 pm

    John,

    Many hearing parents believe that they are helping their deaf children by giving them cochlear implants, based on their research and consultations with doctors. They want to give these kids best tools to achieve in life. Just like Deaf parents give their deaf kids ASL.

    None is doing this out of malice, but out of love and concern. We are witnessing here a clash of values from two different cultures.

85. Joseph Pietro Riolo Says:
    January 23rd, 2008 at 8:08 pm

    Responding to Ms. Karen Mayes in comment #76 and White Ghost in comment #78:

    I likewise would like to know more statistics. But, it will take a lot of time researching and collecting the statistics. FDA (Food and Drug Administration) is one good place to start with (http://www.fda.gov/cdrh/cochlear/index.html). I am sure that FDA has many more reports on different types of cochlear implant but I could not find them at their website. Professional journals are other good place to look up. Those who work in college or university are in a better position to do the research. They can order reports from FDA and borrow journals from other libraries, for example. Not to leave unmentioned, experiences from lay people are also important.

    Joseph Pietro Riolo
    josephpietrojeungriolo@gmail.com

    Public domain notice: I put all of my expressions in this post in the public domain.

86. K.L. Says:
    January 23rd, 2008 at 8:11 pm

    John,
    I cannot answer you. I don’t go out and recruit people. I answer questions if they ask, but I don’t work for implant companies, nor do I have any investment in getting anyone else to choose to be implanted. II simply am not in the position to see the pressure you are talking about. Most of my interaction is on the Yahoo circle, and we have no interaction with parents until they join and start asking questions.

    Of course the parent controls the decision to implant their child. If the child is older, then they should be part of the decision. But most kids get the implant as infants or toddlers in order to maximize their ability to develop the auditory center of the brain, so they would be too young to have any input.

    I simply don’t think anyone is being unfairly pressured into choosing an implant. It is a big decision, so should not be taken lightly. If older kids are being pressured by other kids, I cannot answer to that. My child is mainstreamed, and happens to be the only deaf child in her school at the moment.

    When my husband and I made our decision, I can assure you that we were not pressured. We pushed to get it done sooner. We absolutely did not let anyone else push us into anything.

87. linds Says:
    January 23rd, 2008 at 8:15 pm

    hey everyone,
    i love seeing ci responses on deaf read because i can feel connected with both the ASL and oral deaf communities seeing that i do sign ASL but also use a cochlear implant. i enjoy hearing news about both, but i do agree the gallaudet protest took up everything. if it wasn’t for deafread, i wouldve not been able to keep touch w deaf community!
    i love having best of both worlds.
    just my opinions.
    signing off, linds.

88. anna s Says:
    January 23rd, 2008 at 8:15 pm

    On a second thought I shouldn’t say circumcision is a form of child abuse. This would imply that Conservative and Orthodox Jews are child abusers. Shame on me! Please let me take my previous comment back.

89. White Ghost Says:
    January 23rd, 2008 at 8:32 pm

    Joseph, #83 –

    Thanks. At least you tried….the FDA report you posted here was pretty old. It was the 2001 report.

    However, I posted #69 in this blog, the Dr. Ross’ report on other CI models along with the new model that the FDA is trying to approve *might* be the valid. It’s about the Hybrid CI and ABI.

    The FDA *needs* to provide the *new* reports on these different CI models. That way we’ll know the answer.

    Well, you tried and I tried…..

90. Mishka Zena Says:
    January 23rd, 2008 at 8:37 pm

    I’ve requested a good friend, a medical librarian to find the medical data for me, searching through Med-Line, etc. I haven’t heard back from her yet.

91. White Ghost Says:
    January 23rd, 2008 at 8:41 pm

    Mishka –

    Pleazzze let us know the status on these CI models.

    I hope the reports are effective and operative with the failures and successes.

92. A Deaf Pundit Says:
    January 23rd, 2008 at 8:42 pm

    anna s, I think that failure would depend on the individual, but generally I’m referring to medical wise. Complications from the surgery that are chronic, the CI not working as well audiologically-wise as advertised.

    I’m not talking about mechanical failures. We know those happen and they’re a very occasional thing. I’m talking about adverse side effects like Aaron and Erick had. I don’t see very much documentation on that. We know it exists. But we’re not sure how prevalent it is, because like MZ said, everytime we mention a story like that, we get brushed aside for supposedly using scare tactics.

93. anna s Says:
    January 23rd, 2008 at 8:44 pm

    DP,

    Thanks for clarifying, at least for me. (:

94. John Critser Says:
    January 23rd, 2008 at 8:52 pm

    KL-

    Thanks for the response, for clarifying your position on the issue of pressure:

    “I simply don’t think anyone is being unfairly pressured into choosing an implant.”

    We can’t speak for others that actually felt the pressure. In this world of all possibilities, there are those who have been pressurized to get CI implants.

    We can’t deny this, or this is a perfect world.

    As for parents being pressurized, the real issue is the Deaf child themselves feeling pressure. The person next to me has feelings which are significantly different from mine, obviously. Not everyone shares the same sentiment.

95. Terri Watts Says:
    January 23rd, 2008 at 8:54 pm

    *cough*
    Be try remember, Not like everyone who aren’t same everyone same ci’ers or ex-ci’ers. Please everyone have to accept understand their feeling because not work for ci due their reasons side effects: Headache or miragines or nothing hear any sounds or other kind of relate to.. Some other people who can hear as well which it’s working.. So Many Vary peoples are.. Don’t forget that!

    Seems you feel not welcome anyone, who accept that whoever have ci but not working.. Have to rights speak out truth.. You have to accept two sides, but you didn’t accept look for another side.. All you want one side instead 2 sides Pro vs con.

    You not accept “Deaf Child” and want fix your child! You just seek for solution! God create a beautiful Deaf baby.
    I’m very accept who am I.. I’m happy and Deaf person and wonderful family here.
    I didn’t ask for remove cochlear and wanted to be Deaf baby.. I love all my children who they are hearing. Let it be.. natural!

96. John Critser Says:
    January 23rd, 2008 at 9:03 pm

    To #82 Mishka,

    That is true, a clash of two different cultures. Not out of malice, but out of love and concern. Some push it too far because the love is narcissistic in some ways. When I was a child, I was oral because my parents chose the oral method for me. As a 12 year old, I decided otherwise and learned ASL. Sometimes mothers want to dress with the same shoes as their daughter’s, or vice versa. We want our children to be like us!

    What I hope is for the parents to accept their child’s Deafness and embrace the Deaf cultural view instead of medically analyzing the hearing impairment to no end. Acceptance boosts self-esteem, even allows the person to move on with life. In Deaf culture, there are no shortage of friends.

97. Laney Says:
    January 23rd, 2008 at 9:57 pm

    I agree that parents are doing for their children out of love and concern. I don’t quite agree with the “clash of values from two different cultures” portion of the comment. That suggests that if our values clash…one is right and one is wrong. Being a mom to a CI AV kiddo, I have NEVER said nor heard from any other families, moms, dads, etc. of other AV children, that parents who choose ASL for their children are wrong. I have on the other hand, heard from many that choosing CI or listening speaking for my child is wrong. If we say that the values of two different cultures are clashing, then how will this ever be resolved. Look all over the world at the wars fought over this issue. Are we really two different cultures?? Don’t we actually value the same things? Just wondering.

    John- are you saying that parents who choose CI and AV/Oral routes are narcissistic? Or parents can be narcissistic in general? Just as you view Deafness as cultural; there are always going to be those who view it as medical. I don’t think this will ever change. However, I believe strongly that parents like myself accept their child’s deafness and embrace them. This acceptance has boosted my son’s self-esteem and has allowed him to live his live richly. In life, there are no shortage of friends.

98. Laney Says:
    January 23rd, 2008 at 10:00 pm

    Let me say, I’ve seen rather than heard from many that choosing CI/AV is wrong….on the internet.

99. John Critser Says:
    January 24th, 2008 at 12:39 am

    Laney:

    You quoted:

    “Being a mom to a CI AV kiddo, I have NEVER said nor heard from any other families, moms, dads, etc. of other AV children, that parents who choose ASL for their children are wrong.”

    My response:

    That may be your experience that you never said, nor heard from any other families of CI/AV children saying that the parents who choose ASL for their children are wrong.

    But that is a little bit naive, because the world is bigger than we realize. There ARE families who disdain the idea of their children using ASL. Some fear that it causes erosion of speech and listening skills. ASL is shunned in oral schools, whispered against. Parents who strictly only wanted their child to speak orally without any signing skills, looked down on other parents whose children used ASL, or rather avoided allowing their child to hang out together in fear of exposing their child to ASL.

    I grew up oral, that is how I know. I am speaking from my own experience. I have had my hands put down when I tried to sign. I have had teachers telling me, “No no don’t sign. It is not allowed and it is not a good influence to the other students.” I have had a child of other parents come to me and said “I am shocked you use ASL now. It is not good. It makes you different from us and it is shameful.” Needless to say, later that kid learned and became proficient in ASL. But I was stunned when he told me that, and hurt. Felt lowered in status, really.

    There are parents who or anti-ASL. Look at the AGB organization, it is ORAL. There have been Deaf people who use ASL protesting against AGB, obviously for valid reasons. Many Deaf professionals joined the protest. I know them all and they are perfectly normal and very intelligent people. AGB is anti-ASL. Otherwise we wouldn’t be protesting against them. Many oral students grow up as AGB members or become AGB members later in life.

    We as a clash of cultures have different values, different views. I know of one vlogger whose parents took the child to an Acupuncturist in hopes of having the hearing restored. It seems like hearing people are always trying to fix us. Some do accept the good intentions, and others just want to move on with their lives and accept their Deafness and use ASL.

    I just feel people are naive about how parents of CI wearers view ASL. Every oral program is distinctly different, some are very pro AGB, some are flexible in encouraging the students to also learn ASL outside of classes at home. Some parents don’t ever want their child to learn sign language. Those parents do exist.

    I keep hearing from you guys saying “I never heard other parents say it is wrong for the parent to encourage the child to learn ASL.” Or “I have never seen anybody who had CI surgery experiencing severe headaches.”

    I don’t know if it is a defensive mechanism or denial, or both. But if you really want to know the truth, reach out to other parents from other oral programs and seek their opinions. Not just your child’s oral school’s inner circle. Sometimes in yahoogroups or other chatrooms, they can be found or in other discussion groups.

    But meeting someone in person, seeing their emotions, their adamant stance, their narcissism, it brings reality to home. There are parents who absolutely forbid ASL in their homes or in their child’s school. They’d as soon as find an oral program, that forbids ASL in classrooms rather than a total communication program.

    We do value different things. How do we value the same things? Keep in mind I am SPECIFICALLY talking about parents who oppose ASL as an alternative language to be used, even bilingually.

100. JMA Says:
     January 24th, 2008 at 1:24 am

     There are lonely ci deaf children/teenagers/young people out there. Help them! Let them to be part of us, deafread.com. Some parents didn’t realize that they are isloated and lonely in hearing world. Some are not honest with their parents because they don’t want them to know the truth about their deep problems. Most of them are shy. I think that deafread.com make them sane.

101. jodi Says:
     January 24th, 2008 at 2:01 am

     Whoa! Lot going on here! I chose to have my child implanted and circumcised (lol). PS. ALL is PROPER in love and war…Jodi

102. jodi Says:
     January 24th, 2008 at 2:02 am

     PS. I thought Mishka was your real name, too! I’ve heard just about everything all the way over here in Italy. Still trying to figure out what Pundit means, too lazy to look it up…:)Jodi

103. Mishkazena Says:
     January 24th, 2008 at 12:17 pm

     Mishka is the name of my doberman. Zena is my cat’s name

     Laney, yes it is a big cultural clash. You see, Deaf Culture do not believe deafness is a disability at all. They have incorporated deafness into a treasured trait in their culture and honestly feel offended at the concept of deafness being fixed. To answer your question, I honestly don’t know if the hard-core Deaf Community and C.I. Community will ever see things the same way. There are so much misconceptions about cochlear implants and ASL.

     I agree with John. I grew up oral and was taught that ASL is bad. I’m still seeing that sentiment among the oral groups on listservs, though it is not as blatant nowadays. Unfortunately ASL is being scapegoated for the poor literacy of the deaf kids when it was actually due to the lack of exposure to a real language during the critical period of language development. That lack of exposure will affect any language, not just English, but also ASL and others. Also many sign language used in hearing schools and some deaf schools are not really ASL , but a combination of English and ASL signs, a communication mode which only confuse the deaf kids on what a real language is… because two languages cannot be used at the same time. It’s an impossibility. All of these have been documented in countless studies conducted by linguists

     So there is a lot of misconceptions we need to clear about ASL.

104. A Deaf Pundit Says:
     January 24th, 2008 at 12:22 pm

     Jodi, Here’s the definition of pundit from http://www.m-w.com – one of my favorite websites.

     Main Entry: pun·dit
     Pronunciation: \ˈpən-dət\
     Function: noun
     Etymology: Hindi paṇḍit, from Sanskrit paṇḍita, from paṇḍita learned
     Date: 1672

     1 : pandit 2 : a learned man : teacher 3 : a person who gives opinions in an authoritative manner usually through the mass media : critic

105. John Critser Says:
     January 24th, 2008 at 6:21 pm

     Mishka, the doberman who addresses all issues, and Zena, the cat navigating the web of confusion, clarified perfectly:

     “yes it is a big cultural clash. You see, Deaf Culture do not believe deafness is a disability at all. They have incorporated deafness into a treasured trait in their culture and honestly feel offended at the concept of deafness being fixed. To answer your question, I honestly don’t know if the hard-core Deaf Community and C.I. Community will ever see things the same way. There are so much misconceptions about cochlear implants and ASL.”

     That just shows me how important both ASL and CI bloggers are, because if the right things are being said, it can clear up a lot of misconceptions. This quote is ironclad as one of the most perceptive comments I have read in this blog and in most blogs. I plan to read more CI blogs to learn more about their perspective and concept, or more accurately, misconceptions.

     I want to say that I do know there are CI implantees who value and cherish Deaf culture, regardless of the medicinal view imposed on them or regardless of the fact they embrace both cultural and medicinal views.

     As for Laney’s response re: narcissism as parents of Deaf children, ever trying to fix them to be like them: hearing parents.

     Let’s go back to this comment:

     “John- are you saying that parents who choose CI and AV/Oral routes are narcissistic? Or parents can be narcissistic in general?”

     Any parent can be narcissistic in general but specifically parents who clamor to have their children speak perfectly like themselves are narcissistic, because it is at the emotional, physical, and mental expense of the Deaf children who felt they were fine, or felt that God made them the way they are. It depends on the motives of the parents. Some are out of genuine love and concern. Some are out of selfishness (narcissicism). Some are over saving face, so that they won’t be embarassed when the Deaf child speaks with poor speech skills on front of family (relatives) and friends. Some are because of systematic pressure from schools, audiologists, psychologists, educators, and speech therapists. Some are because their children simply wanted CIs, and the parent honored the wishes.

     There are so many intangibles and we cannot deny them all.

     Now in responding to Laney’s comment that “In life, there are no shortage of friends.”

     I can only say in regards to that, that every CI or oral deaf child is different, it depends on their character, status, speech skills, the parents who are friends with other parents, that sort of alliance, et cetera. There are many components required for the cells to stick together and make the X amount of friends.

     I honestly feel that a Deaf person fluent in ASL has more friends. It is strictly my opinion, not the social norm or from any study or survey. It is just solely my perception (at least I admit it)..

     My perception is that in Deaf culture, the networking is so expanded: Deaf schools (both in classrooms, on campus, and in the dorms), Gallaudet students and alumni (NTID & CSUN too), Mainstream schools that use ASL,
     big Deaf college programs, Deaf clubs, Deaf organizations, Deaf associations, Deaf chatrooms, Deaf blog sites, Deaf dating sites, Videophone availability, Deaf camps, Deaf churches, Sidekick and Blackberry pagings/e-mails, and Deaf events such as Deaf Expos, Basketball tournaments, Softball tournaments, Racquetball tournaments, Dart tournaments, Disc golfing tournaments, Golf tournaments, Bass fishing tournaments, Deaf fundraisers, et cetera…The opportunities are unlimited…

     But the oral deaf who refuse to learn ASL or are discouraged from learning it have narrowed their window of opportunities..The only biggest event I know they go to is the Alexander Graham Bell Assoc. conferences and their oral school reunions. What else? Maybe at the adjoining families’ BBQ gatherings. Fundraisers. Many do use sidekicks or blackberries, to the least. The closest semblance of using CRS/VRS is the VCO option.

     Never in any wise would I want to put deaf oralists down as a character. I am just citing the differences, the clashes of cultures. I have some good memories at the oral school I attended, I liked the teachers I had. But some other parents (gossipers), and teachers were bad apples. I don’t have a grudge against oral schools and the students because of any negative experiences I had, but I do recognize what was healthy, and what was not healthy, in the upbringing along the way.

     But in regards to character, I don’t care of the person is strictly oral, as long that person has a kind heart and is open minded, willing to communicate with anybody, and doesn’t look down to people who do not use speech at all, and understands both the medical and cultural views. It has to be a two way street, not a one way street.

     We don’t have to adopt the concept but at least have an understanding of each other’s concepts, the misconceptions is a problem and contributes to clash of cultures. But believe it or not, we don’t have misconception of the oralist’ view. You can see in the blogs we are aware of what AGB stands for, their mission statement, we are aware of the issues because word gets around pretty fast in the Deaf world.

     Sometimes it is the parents that have to bring to attention some of the issues to their oral deaf child. In the Deaf world it’s not that way.

106. no name here, sorry! Says:
     January 24th, 2008 at 7:06 pm

     I was asked to leave this message here on the comment instead. ok, thanks.

     “““““““““

     I guess it is too late, but here are my responses..

     when ci blogs popped up in DeafRead, I got nervous about how ci could be toward us.

     I was concerned about the reactions, about the false influences and false hopes, about losing the identition of Deaf Community or culture,and tearing apart of the Deaf Culture ever more.

     Hopes: ??? Better understandings what the ci is all about, that Deaf people with ci are more friendly with us, and that we feel more comfortable among them than feeling pressured about their wanting ci on our own.

107. dog food Says:
     January 24th, 2008 at 9:33 pm

     thank god you all finally got your fill of this CI jabbering.

108. Anonymous Says:
     January 25th, 2008 at 9:46 am

     I understand why Susanna (Amy) were trying to protect other parents from those horror stories because they did upset me and my husband while our child was in process of receiving CI. Erik’s comments turned me off with a bad attitude towards CI and I heard that he had a personality problem from a friend who knew him. So, I decided not to take those few rare horror stories online too personally as I have met lots of parents with CI kids and CI adults with positive stories and none of them had bad experiences. However, I’m glad that MZ is trying to find out all the truths and facts about CI all over the world and that would help us become better educated. Keep up the good work!

     Deaf Parent

109. Anonymous Says:
     January 25th, 2008 at 12:53 pm

     To Deaf Parent in #108:

     Could it be that Erick’s blogpost is an exaggeration?

110. Mishka Zena Says:
     January 25th, 2008 at 1:06 pm

     I know Erick and his wife. He wasn’t exaggerating. He actually experienced a lot of problems with his cochlear implant. I’ve seen him move his ear and it was indeed detached. Seeing that ear being detached was difficult for me. I have seen him in pain, too.

     If there was some doubt about his credibility, I wouldn’t have covered his story at all. I also can understand why he is so angry. In my opinion his reasons for being angry are valid. Really we shouldn’t judge them until we walk one mile in their shoes.

111. ChrisH Says:
     January 25th, 2008 at 2:55 pm

     I found website that has information about cochlear implant poll.

     If you were counseling other parents of deaf infants, newly diagnosed, would you encourage them to seek information about cochlear implant candidacy”

     96% (112) Yes, absolutely!
     2% (3) No, not at this time
     0% (1) Not sure yet

     Does or did your child experience any of these, to your knowledge, as a direct result of cochlear implantation (not attributable to other causes as far as you can tell):

     12% (1) Tinnitus
     12% (1) Teasing
     12% (1) Headaches
     62% (5) Self esteem issues
     0% (0) Meningitis
     25% (2) Unspecified Pain

     http://www.misterpoll.com/polls/320907/results

     I suspect that poll must be fake.

112. Jean Boutcher Says:
     January 26th, 2008 at 12:11 pm

     Elizabeth,

     Thank you for your comment in #110.

     I have some questions to ask you to ask Erick.
     Has Erick filed or is planning to file a lawsuit against the doctor? If not, why not? I consider his case very strong. How old was he when he was implanted? Was CI his idea or his parents’ idea?
     Does he disapprove of CI for all deaf people based
     entirely on his bad experience — regardless of
     the successes of other implantées?

113. Susanna Says:
     January 26th, 2008 at 1:41 pm

     Chris, the poll is not fake. It has been voted on by parents on my email discussion group for parents of kids with CIs. It has been voted on a couple of times by anti-CIers as well, but the overwhelming number of voters have been parents.

114. Anonymous Says:
     January 26th, 2008 at 3:19 pm

     Jean has good questions about Erick’s case and I’d like to hear the answers. I also inquired MZ about Erick privately. Did Erick’s surgeon cause the same problems in other patients? Was his surgeon top skilled? Did Erick see another doctor to help resolve his CI problems or to remove his CI? His case seems to be very rare and I’m sorry it happened to him.

     Deaf Parent

115. Mishka Zena Says:
     January 28th, 2008 at 1:37 am

     Jean and Anon,

     Erick’s surgeon was top-notch, having performed over 200 cochlear implants. I don’t know about the other patients as Erick didn’t mention them.

     Erick mentioned the the surgery to remove the implant involves similar risks, so he didn’t want to take the chance.

     The other questions, I do know the answers, but since I didn’t have his permission to share.. hopefully he will see these questions and answer them

116. confused mom Says:
     January 29th, 2008 at 10:57 pm

     why is it if the results are good “it must be fake”…?

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