CI: Uncomfortable Pressure Never Goes Away
1997
So, I decided to have the implant…
I went to see the doctor. Did the usual psychological evaluation, and passed with flying colors. I was a perfect candidate for a cochlear implant- despite the fact that I had been Deaf since birth. The doctor remarked “with intelligence such as yours, you could help me do groundbreaking research on exactly what it sounds like to have a cochlear implant. I’ve not had a Deaf person smart enough to accurately describe sounds. It could lead to groundbreaking developments in future models” He even offered to give me a 2nd cochlear implant- free of charge in exchange for my help in his “groundbreaking research”. I told him “maybe later”.
That day I had the surgery- a lot of weird things happened. First, they medicated me so that I’d be able to pass out. It took 4 vials, which was 3 vials too much- because for some reason, it didn’t knock me out. After the 4th, the doctor said that if I didn’t pass out, they might have to cancel the surgery since I had enough to possibly kill me. Ok. Fine. But, finally, I passed out, so the surgery continued.
You know the usual procedure during the surgery, so I’ll just leave that up to your imagination. Immediately after the surgery, I woke up… Totally high on morphine. I asked my mother what was going on, because everything was moving in a strange way, and that I had weird thoughts and emotions… My mother responded, saying that I was on morphine. Okay, fine. So, for the next 2 hours, I was laughing like crazy, then crying. I was totally bipolar with the morphine in me- that was so unlike me.
Anyway, I had a chance to be alone when I went to the bathroom, so I checked out the “damage”. And wow… I had this HUGE bulge in my head, full of blood. This bulge was actually my skin with blood in there, and it kept growing. This bulge was 8 inches in length, 5 inches in width, and about 4 inches in height. All totally full of blood. Out of horror, I pressed on it, and blood came pouring out of my mouth through my nose passage. I confronted my doctor about this, and he explained that they drill a hole, and now my nasal passage is forever connected with my hearing passage, since the wall separating them (cochlea and the rest of it) is forever gone… So that they could install the electrode in the cochlea. I found out later, that this can cause infections if you were ever to have sinuses… And you can actually have worse sinus problems if you already have them prior to the implant surgery. Fortunately, I never had sinus problems prior, so it wasn’t an issue for me. So, I went to bed… Hit my head by accident, a lot of blood came out of my mouth again. For the next 4 days, I had blood pouring out of my mouth as often as 10 times a day. If you know your math… That’s 10 x 4= how many times? Each time, I had at LEAST 1-cup worth of blood come out. At the most, I had 2 cups. I knew something was not right, and the doctor wasn’t sharing it with me. But I survived.
For the next month, I had to deal with dizziness, electricity in my mouth with the implant on, electrical shocks, overwhelming amount of sound coming in (in the form of electricity), lethargic ness, out-of-mind experiences and a lot of visits to the audiologists’ office to constantly adjust the implant processor.
After all was said and done, I could only learn 3 actual sounds that I understood clearly-
My name. I could identify “Erick”.
.
My footsteps on the stairs. It hurt the heck out of my ears. So, sure as heck, I’ll remember.
Me in the bathroom, urinating.
.
Fast forward to 2007:
As you know by now, despite the fact that I no longer have the implant magnet, I still have the device inside my skull. Even though I do not have anything visible to suggest that I have an implant… If you were to look at my right ear, behind the ear, you’d see a scar. If I cut my hair too short, you’d see a huge scar and a bump. Every time I go through an airport detector, it’ll show up on the screen.
But most of all, I feel it. It is the ever-constant telltale beating heart in my skull. Every time I smile, I feel it. And it’s uncomfortable. Every time I frown, I feel it, and it’s uncomfortable. Every time I have any facial expressions that are absolutely not stone neutral, I feel it. Every time I turn my head, I feel it. It goes from the implant itself and the scar. I can feel the scar itself when I turn my head… Flexing.
I can feel my right ear moving, because you see… They disconnect your ear from your skull when they do the surgery. And, if you know your health science well, you’ll know that ear cartilage does not re-connect when separated. So, I can literally pull my ear out of socket at any given time. When I smile, my right ear and left ear does not move at the same pace, nor does it move in the same location. There is no balance between my right side of my face and my left side. None.
When I am in my bed, I feel it every night, bothering me. It has become so bad that I go to bed at 3:00am, 4:00am every night… So that I would be so tired that I am unable to be bothered with the discomfort with the implant anymore and pass out. Otherwise, I would just lie in bed and stare at the ceiling and try and forget about the discomfort. But it never goes away. So, I have learned not to fight it anymore. Just go to bed when I am so tired that it doesn’t matter anymore. It has caused me to seek employment in which starts after 12:00 noon, because there is no way I can wake up early in the morning like everyone else.
Often when I am relaxing, I all of suddenly feel the implant, and it bothers me and angers me so much that I cannot relax anymore. So, I don’t get that much “relax/down time” anymore. I try to be as loose as possible, but all of this does make it easy for me to be uptight- with a lack of sleep, lack of ability to totally relax. All because of an implant.
That’s not the worst part. That’s coming. My right side- the side of which the implant is located- is weakened. It is not as strong as my left side. For that reason, my right side actually looks healthier. My left eye is open more wider. My right eye is more closed. My mouth on my left side always seems to be smiling. My right seems to be frowning. My left ear is higher than my right ear. I assure you- I have trained myself so well that I consciously compensate for the differences. But it is a constant effort. If you ever catch me relaxing and you take a real close look, you’ll notice it. The thing is, as I get older, it seems to get worse. And to make it even worse, the implant is still in my head, and I want it out. But taking it out is going to damage my nerves further- of which is why I have not taken it out yet.
Sometimes, I get dizzy spells. Sometimes I lose my balance (due to the fact that taking out ear mechanisms does mess up some ear balance) and hit door frames and often, it hits the implant spot-on… And it sends a huge jolt to my head and my vision doubles for a few seconds and I see a big silver flash.
Every time I turn on my pillow, I feel the implant. Every time I put my shirt on, and it brushes against the implant, I feel it. Every time I am outside at the beach and it’s very hot and sunny out, the area of where the implant is, is usually hotter than the rest of my head. I can’t have a MRI. My balance isn’t as good as it used to be. I’m not as graceful as I once was.
This implant has been a curse that forever impacted my life. If I could have changed things, I would have not taken the surgery in the first place. So, naturally, I would have made a different decision. At the time, it seemed the best thing to do. Ah, hindsight is always 20/20.
I have presented the facts as accurately to the best of my ability. Was it all worth it? You decide.
Erick
Commentary: Erick no longer uses his C.I.
1997
So, I decided to have the implant…
I went to see the doctor. Did the usual psychological evaluation, and passed with flying colors. I was a perfect candidate for a cochlear implant- despite the fact that I had been Deaf since birth. The doctor remarked “with intelligence such as yours, you could help me do groundbreaking research on exactly what it sounds like to have a cochlear implant. I’ve not had a Deaf person smart enough to accurately describe sounds. It could lead to groundbreaking developments in future models” He even offered to give me a 2nd cochlear implant- free of charge in exchange for my help in his “groundbreaking research”. I told him “maybe later”.
That day I had the surgery- a lot of weird things happened. First, they medicated me so that I’d be able to pass out. It took 4 vials, which was 3 vials too much- because for some reason, it didn’t knock me out. After the 4th, the doctor said that if I didn’t pass out, they might have to cancel the surgery since I had enough to possibly kill me. Ok. Fine. But, finally, I passed out, so the surgery continued.
You know the usual procedure during the surgery, so I’ll just leave that up to your imagination. Immediately after the surgery, I woke up… Totally high on morphine. I asked my mother what was going on, because everything was moving in a strange way, and that I had weird thoughts and emotions… My mother responded, saying that I was on morphine. Okay, fine. So, for the next 2 hours, I was laughing like crazy, then crying. I was totally bipolar with the morphine in me- that was so unlike me.
Anyway, I had a chance to be alone when I went to the bathroom, so I checked out the “damage”. And wow… I had this HUGE bulge in my head, full of blood. This bulge was actually my skin with blood in there, and it kept growing. This bulge was 8 inches in length, 5 inches in width, and about 4 inches in height. All totally full of blood. Out of horror, I pressed on it, and blood came pouring out of my mouth through my nose passage. I confronted my doctor about this, and he explained that they drill a hole, and now my nasal passage is forever connected with my hearing passage, since the wall separating them (cochlea and the rest of it) is forever gone… So that they could install the electrode in the cochlea. I found out later, that this can cause infections if you were ever to have sinuses… And you can actually have worse sinus problems if you already have them prior to the implant surgery. Fortunately, I never had sinus problems prior, so it wasn’t an issue for me. So, I went to bed… Hit my head by accident, a lot of blood came out of my mouth again. For the next 4 days, I had blood pouring out of my mouth as often as 10 times a day. If you know your math… That’s 10 x 4= how many times? Each time, I had at LEAST 1-cup worth of blood come out. At the most, I had 2 cups. I knew something was not right, and the doctor wasn’t sharing it with me. But I survived.
For the next month, I had to deal with dizziness, electricity in my mouth with the implant on, electrical shocks, overwhelming amount of sound coming in (in the form of electricity), lethargic ness, out-of-mind experiences and a lot of visits to the audiologists’ office to constantly adjust the implant processor.
After all was said and done, I could only learn 3 actual sounds that I understood clearly-
My name. I could identify “Erick”.
.
My footsteps on the stairs. It hurt the heck out of my ears. So, sure as heck, I’ll remember.
Me in the bathroom, urinating.
.
Fast forward to 2007:
As you know by now, despite the fact that I no longer have the implant magnet, I still have the device inside my skull. Even though I do not have anything visible to suggest that I have an implant… If you were to look at my right ear, behind the ear, you’d see a scar. If I cut my hair too short, you’d see a huge scar and a bump. Every time I go through an airport detector, it’ll show up on the screen.
But most of all, I feel it. It is the ever-constant telltale beating heart in my skull. Every time I smile, I feel it. And it’s uncomfortable. Every time I frown, I feel it, and it’s uncomfortable. Every time I have any facial expressions that are absolutely not stone neutral, I feel it. Every time I turn my head, I feel it. It goes from the implant itself and the scar. I can feel the scar itself when I turn my head… Flexing.
I can feel my right ear moving, because you see… They disconnect your ear from your skull when they do the surgery. And, if you know your health science well, you’ll know that ear cartilage does not re-connect when separated. So, I can literally pull my ear out of socket at any given time. When I smile, my right ear and left ear does not move at the same pace, nor does it move in the same location. There is no balance between my right side of my face and my left side. None.
When I am in my bed, I feel it every night, bothering me. It has become so bad that I go to bed at 3:00am, 4:00am every night… So that I would be so tired that I am unable to be bothered with the discomfort with the implant anymore and pass out. Otherwise, I would just lie in bed and stare at the ceiling and try and forget about the discomfort. But it never goes away. So, I have learned not to fight it anymore. Just go to bed when I am so tired that it doesn’t matter anymore. It has caused me to seek employment in which starts after 12:00 noon, because there is no way I can wake up early in the morning like everyone else.
Often when I am relaxing, I all of suddenly feel the implant, and it bothers me and angers me so much that I cannot relax anymore. So, I don’t get that much “relax/down time” anymore. I try to be as loose as possible, but all of this does make it easy for me to be uptight- with a lack of sleep, lack of ability to totally relax. All because of an implant.
That’s not the worst part. That’s coming. My right side- the side of which the implant is located- is weakened. It is not as strong as my left side. For that reason, my right side actually looks healthier. My left eye is open more wider. My right eye is more closed. My mouth on my left side always seems to be smiling. My right seems to be frowning. My left ear is higher than my right ear. I assure you- I have trained myself so well that I consciously compensate for the differences. But it is a constant effort. If you ever catch me relaxing and you take a real close look, you’ll notice it. The thing is, as I get older, it seems to get worse. And to make it even worse, the implant is still in my head, and I want it out. But taking it out is going to damage my nerves further- of which is why I have not taken it out yet.
Sometimes, I get dizzy spells. Sometimes I lose my balance (due to the fact that taking out ear mechanisms does mess up some ear balance) and hit door frames and often, it hits the implant spot-on… And it sends a huge jolt to my head and my vision doubles for a few seconds and I see a big silver flash.
Every time I turn on my pillow, I feel the implant. Every time I put my shirt on, and it brushes against the implant, I feel it. Every time I am outside at the beach and it’s very hot and sunny out, the area of where the implant is, is usually hotter than the rest of my head. I can’t have a MRI. My balance isn’t as good as it used to be. I’m not as graceful as I once was.
This implant has been a curse that forever impacted my life. If I could have changed things, I would have not taken the surgery in the first place. So, naturally, I would have made a different decision. At the time, it seemed the best thing to do. Ah, hindsight is always 20/20.
I have presented the facts as accurately to the best of my ability. Was it all worth it? You decide.
Erick
Commentary: Erick no longer uses his C.I.
January 18th, 2008 at 2:16 pm
Erick:
Was the doctor the only one you consulted with about getting the cochlear implant? How did you come across this doctor? Was he recommended to you?
January 18th, 2008 at 2:42 pm
Erick-
I am sorry you have had a bad experience with an implant. I have an implant myself, and it works for me, but i understand (unlike some people in the last blog post) that cochlear implants can make things much worse. The technology is not 100 percent foolproof, like all technology, and your surgery sounds incredibly traumatic. Perhaps you could find the best cochlear implant surgeon in the country and see if he/she can help you remove the implant in a safe way. How are you faring in life today? Do you sign, use aids? I hope that things get better for you. Thank you for sharing your experience.
January 18th, 2008 at 2:43 pm
Thank you, Erick for sharing your story! Wow about your feeling so hot at the beach and so sad that cannot have the MRI! sheesh!
January 18th, 2008 at 2:47 pm
Hmmmm… did you do research on CIs or just got it on whim? I know that your mother had some involvement in getting you implanted.
Sounds like you had a botched operation… I am surprised that the doctor did not take the complications in post-surgery seriously.
Congrats on being father again
)
January 18th, 2008 at 2:59 pm
Wow. i am so sorry hes suffering unnecessarily. i wonder does it haveto do with a bad surgeon?
i understand the best ci surgeons come from kansas city, san francisco, and st louis. i can not help it but think of plastic surgeries gone bad. bad breast job, bad face lift, bad this and that. it has to do with the surgeon and sometimes it has to do with the patient. some are sensitive and some aren’t.
i am fortunate my son has NO side effects whatsoever.
January 18th, 2008 at 3:03 pm
wow, i’m stunned! That quite serious side effects! CI surgery is completely different from many other surgeries: CI surgery is NOT medical necessary and with all many possible risks, it is not even worth it!
another thing that is so annoying: asking him to help do “groundbreaking research…” – that’s another way of saying, “be my guinea pig; then i’ll throw in a second implant for free.”
January 18th, 2008 at 3:20 pm
engraçado que surdo se queixe de encontro ao CI e outro cura o appeat surdo e não o ataque surdo estas curas
January 18th, 2008 at 3:22 pm
Thanks for sharing your implant story, Erick. It must have been mentally hard for you to relate the surgery and what happened afterwards.
January 18th, 2008 at 3:25 pm
There’s a simple solution to this. Find a good surgeon and get the CI removed. Removal is a simple procedure, much simpler than having it inserted. If you’re not using it and you feel that strongly about it, then have it removed.
Cheers
Robyn
January 18th, 2008 at 3:32 pm
A definite botched surgery. I sympathize you for a continued suffering.
January 18th, 2008 at 3:36 pm
brenster, i think your comments are kind of naive. a deaf baby just perfect the way he is.
boob jobs arent medically necessary.
nose jobs arent for the most part.
my son’s life is definitely much broader with his ci. women can feel good about themselves with boob implants.
i dont buy your argument about “not medically necessary”, sorry mister!
January 18th, 2008 at 3:40 pm
aww, anna s. isn’t that conceited view? naive? nah.
boob jobs are not necessary and nose jobs are not necessary, either.
thanks for confirming that CI surgery is NOT medically necessary; then the insurance companies can deny medical coverage. Hey you – INSURANCE COMPANIES – read here.
January 18th, 2008 at 3:48 pm
yep, not medically necessary, but life enhancing. if a parent wants to enhance their deaf child’s life, so be it. obviously you will not implant your kid, so be it. smile.
now, i would safely assume millions and millions of dollars are being spent on a continuous basis towards residential schools for the deaf, habilitation for the deaf, SSI, SSDI, interpreters, mental health facilities, to name a few.
it is MUUCCHH cheaper for us, taxpayers, that the insurance companies believe that CIs are medically necessary.
January 18th, 2008 at 3:59 pm
Many surgical procedures carry a high risk and often leave patients with some permanent post-surgical effects.
For one, I had to have back surgery. No choice. Afterwards, my back was not the same as before. Up to today, I continue to experience some direct and indirect muscular/ tendon discomfort… that is for life. From time to time, I have to have physiotherapy to minimize the problem.
Lots of patients who had lasik eye surgery (to correct near-sightness) continue to experience vision problems like night blindness, star-glows, headaches, etc etc. Sure, those patients were very happy to be without their eyeglasses. I decided against having lasik surgery – preferring to keep my precious vision. No lasik surgery for me…
Last year, I considered having CI surgery BUT decided against it just BECAUSE one cannot have a MRI diagnostic test for anything (due to the CI magnetic wiring). I had a MRI two years ago to rule out breast cancer. It was fortunately negative. What if I need a MRI in the future???
It shows that FEW surgical patients will come out perfectly wellwith no physical problems afterwards. You need to educate yourself, do Internet research, and ask lots of questions about the lasik surgery or CI surgery before inking your consent papers to go ahead.
January 18th, 2008 at 4:09 pm
anna, ouch – i’d be careful with word usage. look at the guest’s story here, is it life enhancing, do you think? i am sorry to understand that you do not consider your child to be a, as you called it, ‘perfect baby.’
out of my respect to Erick, i’ll not continue to engage in your silly dispute game.
January 18th, 2008 at 4:12 pm
Man Erick, you went through a horrific experience. That doctor does not sound like he has any idea of what he is doing. Sorry, but I compare your experience with the doctor who implanted my daughter, and it was night and day. She has no nerve impairment to her face, her sinus cavity is intact, there was absolutely no blood build-up, and her surgical scar is very small. She feels no pain around her implant.
As to the MRI, if it is needed, they would need to remove the magnet. After the MRI, the magnet is reinserted. The skin needs to heal for a few days, but after that, the external processor can be turned back on. Removing the magnet is a minor proceedure, but the implant would not be able to be used for several days to a week.
In your case, I would strongly recommend you find a top notch CI surgeon, and have them explant you. (remove it). You should not have to go through what you are going through. The doctor should be able to tell ahead of time if he/she can remove it without additional nerve damage.
January 18th, 2008 at 4:16 pm
Erick, don’t wait too long… seek out the top doctor and have him/her remove it from your head so that you could sleep better, be a better father, be a better person, etc.
January 18th, 2008 at 4:27 pm
thats the whole point, i was being silly. (: I feel for Erick. I sure do. But for you to feel sorry about my kid, i think that is a little overboard. my child is perfect before and after. I will sure as hell teach him to avoid Deaf people who think like you.
January 18th, 2008 at 4:38 pm
anna s, look – that were your own words that i was naive thinking “a deaf baby was perfect the way he was” (#11). so in my response i said i was sorry that you THOUGHT that way, certainly not about your kid. i’m quite sure your kid will thrive either ways.
January 18th, 2008 at 4:47 pm
I am deeply touched by the freaky surgery done on you, Erick. I really sympathize with your ongoing health problems which you do not deserve it at all.
Don’t trust unscruplous doctors! You ought to report that doctor to the medical board to stain hir creditinals.
Robert L. Mason (RLM)
RLMDEAF blog
January 18th, 2008 at 5:02 pm
It must be terrible with a bloched surgery. It is terrible to have a lifetime of pain. I would hope there is a doctor that can either remove or fix the implant.
I know when I decided for my CI surgery. I did research my doctor and hositpal. I asked a lot of questions before I decided to go with my doctor. (hositpal is Vanderbilt Medical Center in Nashville, Tennesee).
I know just because my surgery and activation is been a success, not everyone has had a wonderful experience. It really is not a one size fits all assistive technology.
January 18th, 2008 at 5:04 pm
Erick, I feel for you and am sorry that you had to suffer this. Like everyone says, get it removed – it is ridiculous that you have to tolerate it anymore.
I mean no disrespect, but this is directed at MZ.
This blog was uncalled for and guilt driven, it does not promote constructive dialog. It is way too one sided. I understand that there are horror stories out there and things do get screwed up, but I felt that this was a scare tactic and very unproductive. Maybe I should start up a blog site that has a person tell how ASL is ruining his/her life? How would you feel? I understand that you hate the idea of CIs, but what was published above was way overboard. Sorry, but that is the feeling I’m getting here – there is so much focus on the negativity of CI in the deaf community that we are all forgetting how to make the community better cuz right now, you are not helping at all!
January 18th, 2008 at 5:13 pm
Brian, I disagree.
Everyone should be heard and explain their experiences, whether we like it or not.
MZ is doing a CI series showing from all angles and she will continue to do that.
Give her some credit, Brian.
January 18th, 2008 at 5:15 pm
Brian,
Had you read my last post, I said I’ll be posting more cochlear implant stories that didn’t go well, after Susanna insisted that there were no severe side effects.
Unfortunately Erick isn’t the exception, not at all. There are other stories like Erick. I will not sugar-coat this fact, especially after seeing c.i. proponents deliberately withholding the information from the other hearing parents. They deserve to hear the truth.
I also will appreciate it if you refrain from jumping into conclusions about me since you do not know me at all. Where did you get the idea that I hate the idea of c.i.? I’ve consistently stated that I’m neutral.
January 18th, 2008 at 5:15 pm
I remember that some Deaf kids were best candidate for getting CI but after CI, some of them who were CON which they were not invited and not allow to discuss abt CI health problems in the forum for the parents to decide having their own Deaf child to get CI. I sometimes wonder why is that!?
January 18th, 2008 at 5:17 pm
Brian,
I understand your sentiments about having to read such a terrible story. I can understand how it may be seen as a scare tactic but the reality of the whole situation is this:
These stories have long been brushed aside and covered up by the positives of CI. Like I’ve told others time and time again, the truth sometimes hurts and if we continue to brush it under the rug, it will only hurt us more.
As for your comment regarding how ASL may ruin someone’s life. I cannot see that happening because ASL does no physical damage or destruction. What ASL does do, is quite the opposite of what the CI did in Erick’s case. It actually enhances a child’s life in a way that light is allowed in so that that child may grow and be recognized and respected for who they are.
Again, I understand how you may find this story to be without point yet I do not see any progress being made if we do not get these evident truths out from under the rug.
Mishka,
As controversial as this subject may be and as much flak as you may be getting for writing on it, I commend you for taking on the task as a reporter and a writer.
Thank you
January 18th, 2008 at 5:21 pm
I’m supportive of MZ for bringing out all this material–some having excellent results and some having results that affect their lives and comfort. We all need to see this and to respect everyone’s experience, good or bad.
Surgery is never a certain thing and one needs to weigh the risks and whether it promotes life. Often there are tradeoffs and no one is the winner.
We should be worried when bad results are hidden from us and only the good results are shown. THAT is deception and always wrong.
January 18th, 2008 at 5:26 pm
Anna S, your comment #13 is a little way off about insurance coverage. Federal Health Insurance Commission don’t include any deaf experts in that debate so the hearing people have their biggest advantage to butter them up for approval processing without any deaf people knowing. In my state, many deaf people really are watchdog to make sure anything don’t pass our eyes anymore. We did learn hard lesson to goof around. We keep eye on any new laws being discussing related to any deaf issues. So far we won 2 cases or more, I think.
January 18th, 2008 at 5:27 pm
I agree with IamMine. MZ has already posted a number of positive CI stories. We need to read ALL of the perspectives, pro and con, so that we can get a better sense of the full picture.
That said… MZ, you really ought to consider (if you haven’t already) taking this one step further and publishing a bona fide BOOK. You have this ability to approach sensitive issues in such a way that you’ve earned our trust.
Best regards,
Drolz
January 18th, 2008 at 5:30 pm
Erick, what a horrible experience, what an awful doctor, terrible post-op care. I’m so sorry. I completely understand that you have nothing but regret for this malpractice, for the surgery, for considering a CI. None of that is what you should have expected, and you shouldn’t have to live this way. I know it won’t take away the experience of what’s happened, but I agree that this mess of an implant should be removed so you can be free of it!
Mishka, I loved what I thought was your intention: to show all sides. But I misunderstood. I thought you were planning to show some examples that were counterparts to Rachel’s CI story: a young person of roughly the same age who chose not to get a CI and uses ASL or SEE or another language approach and is doing wonderful things (attending college or working at a fulfilling job), so those of us with young deaf children have models across the spectrum.
I hope that telling these stories is therapeutic to those you’ve spotlighted, and countering a positive with a negative example is good. But I don’t think continuing the negative stories heals the community or brings understanding of why some people want CIs or how the deaf community can integrate those who bridge both the deaf and hearing worlds. I think you were really getting somewhere with a painful, but open dialogue in the last two posts and hope you haven’t given up on the idea of unity completely because you’ve been attacked by extremists (on both sides of the issue).
January 18th, 2008 at 6:05 pm
The parents are part of the Deaf Community. That’s been said int he past. Is that in dispute now? This is just as much for the parents as it is for us Deaf.
It seems to me that everyone’s okay with the Deaf changing and realizing things… but quite resistant when we try to educate the parents as well.
Brian, go for your blog about how ASL harmed people. Back it up with research, while you’re at it.
Because I can back up MINE. Have a nice day.
January 18th, 2008 at 6:11 pm
anna s, your comment about contact sports being a myth intrigued me. Because I was always told CI implantees are told not to play contact sports, including doctors.
So I googled cochlear implant risks and found the FDA page, which lists both of the benefits and risks of the implant.
http://www.fda.gov/cdrh/cochlear/riskbenefit.html
On there it says: * May damage their implant. Contact sports, automobile accidents, slips and falls, or other impacts near the ear can damage the implant. This may mean needing a new implant and more surgery. It is unknown whether a new implant would work as well as the old one.
So I can understand where this comes from. Playing contact sports runs the risk of damaging your implant and that’s never a good thing. So I would think that any responsible, ethical doctor would tell the implantee that s/he should not play contact sports.
January 18th, 2008 at 6:23 pm
That is that…
That is what I’ve tried to tell that d*** Susanna about the limitation on the Cochlear Implantees’ passion and wishs.
However, we cannot control and treat the infancies and toddlers’ years not to hurt each other when they get the head-on accidents. What do we expect from them? Do the infants and toddlers comprehend how much do they really careful with their CIs? I think not!
January 18th, 2008 at 6:27 pm
Thank you for your unwavering support for me to continue with the coverage of the not so pleasant stories.
Li-Li Mom, I’m covering all aspects of C.I.s itself. A healthy dialogue between the C.I. Community and Deaf Community will result ONLY if they both acknowledge the positive and negative results of cochlear implants. The C.I. Community brushing the ugly truth under the carpet or the Deaf Community denying the success of some c.i. cases is not going to help improve the strained relationship between the communities.
And, no, I’m not giving up on Deaf Unity. I think some constructive discourse had begun already, despite the temporary setback created by Susanna yesterday. However, I am taking a break from this series this weekend so I will be refreshed.
January 18th, 2008 at 7:00 pm
Mishka,
I am certainly finding this dialog useful. Some of you may know I have been considering an experimental cochlear hybrid that is a half-implant. It’s the same surgery where they peel your ear back, but only thread the electrod into the cochlea halfway, which is supposed to preserve low tone frequencies. It’s in testing phase in the US, but they’ve been doing it in Europe for quite some time. I was initially exicted about it. I’ve been envious of friend who had implants because they seem to be able to hear so much better than me. They can hear on cell phones and in restaurants and movies. Anyway, I met the criteria and as I said it’s still in testing phase, so I’ve been waiting to hear when they’ll open up phase three.
I was told there was “some” risk, as in all surgery, and also I could lose my good my low tones anyway. I had already pretty much decided against it because of the risk to my good low tone hearing. Plus I have a lot of head pain.
This is a good blog about the side effects. I think I’m making the right choice!
January 18th, 2008 at 7:15 pm
Hey Kim!
Well, if not for Deafread, what would you do? Nothing would have for you to learn more about the CI’s side effects!
Write a nice thank you note to Tayler for saving your life.
Enjoy your endeavors!
Hugs!
January 18th, 2008 at 7:19 pm
I really truly feel that the experience of the doctor makes all the difference. Of course, there is no way to predict how you will do, and all surgery carries risk. You need to feel confident in your doctor, and if you don’t, absolutely don’t get the surgery.
That having been said, I actually don’t recommend getting a CI if you are over the age of 5, if you have been deaf since birth. If you have a progressive loss, it is a different story.
In this, I believe implant companies and centers need to do a much better job of giving people realistic expectations. If you go in knowing you may only get a 20% improvement in the ability to comprehend speech and you actually get 40% improvement, you will probably be happy with the results. If you expected 75% however…
January 18th, 2008 at 7:21 pm
Oh pls excuse me for no patience with my slow pager! I’m now on a ladies’ bathroom toilet from my work place. Anyway I forgot to report or add one more thing! Also I rememy that there were several hearing parents were not welcome, not invited and NOT ALLOW to discuss about their own CI child’s health problems, too! I need go back work now!
January 18th, 2008 at 7:44 pm
Hi,
How about if all Deaf parents (please dont be mad at me for saying this) poke their hearing children earsdrum to be Deaf like them… How would the world view that? I bet it make every hearing people so angry. Well the Deaf parents love their hearing children regardless!! Why can’t the parent do the same for their Deaf children. Leave them be like God intended them to be???
God made us Deaf for a reason!!! I bet He is up there on his Throne wondering why so many people have to fix them to be hearing… He like different cultures…
Why can’t we just appreciate what we have? Oh yes I know what I am talking about I am DEAF, my husband DEAF and my girls PROUD DEAF.
January 18th, 2008 at 8:07 pm
Erick, thank you for sharing your experience. I do realize it was in 1997 and many implant doctors back then didn’t have the experience they so now– which can make a difference in outcomes. Some of the surgical techniques today have changed compared to ‘97. I hope you can get a second opinion about explanting and see if that will relieve some of what you’re experiencing.
As for the concerns about showing positives vs. negatives, we have to keep in mind that whenever someone shares an experience of their own, whether good, bad or in between, it is their experience to share and not something that has to be portrayed as being on one side or another.
January 18th, 2008 at 8:18 pm
MZ, I think I understand. My hesitant reaction is partly because this was very difficult, painful to read. I’ve researched the recent generation of CIs, the very low technical / surgical failure rates, my own surgeon’s record, the hospital’s record, and interviewed nearly 30 families personally, as well as having access to the very frank assessments of those on the CI forums who have had CIs themselves (people there are very outspoken about what works, what doesn’t). The “success rates” of those who have had a CI n the last few years is harder to quantify, but those individual stories tell a mostly positive tale.
Of the families, all but one had a range of results (a wide range) within the positive side of the spectrum. I considered the one family I spoke with that had a sad outcome — the child rejected his CI after a difficult year, hasn’t worn it for 4 years, and his implant gives him a lot of discomfort — as being an anomaly because he had other physical and behavioral issues that compounded problems.
OK, now wait before you throw things at me for having said that, because I know many here disagree with all of that. Because I have to admit, reading this story just broke my heart. It’s very true that direct stories like this hit much harder than percentage rates and abstract “I know a guy who …” references.
My daughter has come through getting her CI with only the most positive results, but even just one story like this freezes me cold: because I’m researching getting a bilateral implant, a second CI. This is making me redouble my efforts to find all the information there is out there and make certain I’m not receiving filtered numbers and getting limited access to those who have done this already before we make the decision. Most of all, it makes me certain that finding the right surgeon is so critical, and I’m so thankful that ours was one of the good ones, and not a hack like the person who did this to Erick.
So, MZ, painful as this is to read, hit us with it.
January 18th, 2008 at 9:45 pm
Mishka,
Susanna can be seen as a CI militant. You booted her off. What about some Deaf militants who are ANTI CI on your blog? Why aren’t they booted off or reprimanded for being harsh? for example. Just today, two commenters on your blog said my son will never be able to play sports with some mockery in tone and that they feel sorry that I do not see my son as perfect. That is hurtful. I reacted like any other parent would, hearing or deaf.
If you do not allow opinionated parents beyond reason on your blog, you should do the same for the fanatics on the opposite end. I am saddended to lose a parent of a CI child from DeafRead. We have lost several and we do not need to lose more.
A fanatic is one who can’t change his mind and won’t change the subject. Sir Winston Churchill British politician (1874 – 1965).
If you allow one fanatic to stay, the you shall allow the opposite to stay.
January 18th, 2008 at 9:54 pm
Deaf Pundit,
Definitely a CI kid CAN play football, basektball, ice hockey, and any other contact sport. Just be careful, wear a helmet just like anyone else on the rink, court, or field. The only problem my son has is keeping his damned processor on his head when he plays. Sometimeshe just dons a cap and goes off to play rough. This is defintely something CI manufacturers need to consider by revising the design.
I have been around them, seen them compete. Yep, they can do anything like a non CI user. Even walk through screening points at airlines!!! Scuba diving is possible within reasonable depths. There are many myths about CI circulating in the Deaf world.
January 18th, 2008 at 9:54 pm
Anna,
Thank you for writing this. I had been thinking the same thing and actually emailed Mishka earlier today saying that I was backing out of participating, that I was tired of defending myself against the extremists, that I had come on here after being asked to share and educate and not to defend my choices. Why was it okay for someone to say that my girls’ heads could fry or explode during a terrorist attack or some of the other extreme comments that were aimed at me, but it was not okay for someone to speak on the opposite end?
January 18th, 2008 at 10:07 pm
I can sense what Brian Mayes meant when he said ASL did harm than good for some deaf children.
Some kids’ literacy development have been slowed down by ASL only instruction in the classroom. Before some of you shoot me with bullets, I received training by the folks from the Center for ASL/English Bilingual Education Research (CAEBER). Sure, some kids progress quickly bilingually. No question about them needing ASL! Almost all of the students in the DHH program where I work require instruction in ASL in order to acquire content information. I also know some deaf/hoh children who would progress quicker if instruction was in signed english. I am opening a whole new can of worms.
Sorry, Erick, this blog is focused on you and your horrendous CI experience and here I am discussing deaf education politics. Oh well.
I do sense Brian has some validity to his comment, but probably he could have reworded his statement a little differently by saying ASL is not for all deaf kids as some would have progressed much more quickly if using a different mode of communication. Wow, I am on a roll. Blame coffee!
January 18th, 2008 at 10:09 pm
To #38…..oooops, covering my eyes.
January 18th, 2008 at 10:11 pm
Melissa,
BINGO! I would be really pissed if someone in this blog says my kid’s head would explode. That is the very reason why I am not taking him to “strong Deaf” community events nor sending him to a residential school. Hell no! But its OK to have him hang out with his CI buddies at camp, deaf kids in the mainstreamed DHH program during recess/lunch if he chooses, and participate in deaf community events that arent so much into Deafhood thing.
Mishka, care to have a say in this?
January 18th, 2008 at 10:56 pm
Li-Li’s mom thank u for sticking in here and posting in various places
i think u r a brave and caring soul
u wrote… in #41. “The “success rates” of those who have had a CI n the last few years is harder to quantify, but those individual stories tell a mostly positive tale.”
I think the issue that MZ, DP and others are trying to address is the lack of longitudinal studies done by unbiased, uncompromised, research bodies.
i do not think any such forum or research exists – this is an outrage!
really!
it is an outrage and an injustice to you the loving mom, all the parents who choose CI at a very tender age because they are told the earlier the better, to the d/Deaf child and to the Deaf Community
it is invasive surgery. there are MANY risks
the “success” rates really depend on your center
we have data that shows if a child is raised bilingually with strong ASL at an early age and strong parent and school involvement and a LOVE of READING they soar academically, intellectually, and emotionally (this is the one critical piece u will find in almost all research on D/deaf children’s literacy abilities – it relates to a love for reading)
the thing about CI and AVI is that the “success” is all defined by the ability to hear and speak
this is old news – D/deaf folks being judged, evaluated, and deemed human and worthy solely based on their ability to SPEAK
aristotle said “man who can not speak, can not reason…” or something to that effect and hence we had the term “dumb” saddled onto the Deaf being for centuries – sure it meant inability to speak but its origins rested with the inability to think
it is assumed if u do not speak well u can not think well. i can not tell u how often when someone hears my voice after knowing me for a long time as a big ASLer will suddenly change their view of me – all the sudden im “intelligent, im attractive, im *gasp* normal in their eyes and shame on me for not using my beautiful voice more often” yes i still get scolded at the age of 40+
hence the word “intelligible speech” as in intelligent
ASL has long been regulated to a “remedial, for oral failures” status
hence “pre-lingual” deaf forever meant those who became deaf before they acquired speech – the only lingual of interest of course was spoken English (for US deaf) and never ASL
so this is really the crux of the issue with CI as with oral/aural only programs
no one really knows WHY some “succeed” to being about to hear and speak “like a hearing person” and some do not – tea leaves, crystal balls, best surgeon, best speech therapy, AVI only or bibi only – none of them are guarantees the child will be “hearing-like”
the fact that parents are rushing and knocking themselves over in pursuit of the latest and the greatest CI and not just one – lets get two all in the hope of “overcoming” deafness
sends a huge message to the child – even the golden children who are a “success”
ur worth is forever measured by your ability to be as much like a non-deaf person as possible
even those children who never experience any negative physical side effects of CI surgery – will still have to wrestle with this – “im only ok when my CI is working and im “functioning like a non-deaf person”
today a student was remarking how his picture was taken in his hearing school as the “model of success” the poster child of a deaf kids who really seemed hearing – at the end of his comment he made a face like “what a joke” – it really was precious. he said at the time i thought it was so cool cuz i was in the newspaper.
i have no doubt that some folks LOVE their CI and love their lifestyle as a non-deaf deaf person but i have often encountered many who are suffering from the fall out despite their ability to “function” like a hearing person – they still are not happy with that “passing” status – that listless limbo
ACCEPTANCE often comes to us first and foremost at home – unconditional love
its usually the building block of our being and our future path to self-actualization
in NO WAY am i saying parents who choose to give their babies, infants, adolscents CI(s) are not loving, caring, and aiming to do what is best for their child
in NO WAY am i saying a d/Deaf person who was implanted with a CI as an infant, child, teenager, etc can never fully feel loved, accepted, normal etc
no i am not saying that at all
i am saying – there is a danger in this risky quest
there is a gamble in this search for the “holy grail of curing, eliminating, iradicating, overcoming, what one really is and there often is a price”
within the last two years a say a researcher (and parent of Deaf children) present about CIs in children in Australia. they are very aggressive in implanting children there
they were trying to do a longitudinal study on these kids who were being implanted and their “success in school” etc.
he said that the data was messy because the parents often were switching types of programs and educational settings because the CI were often not the magic answer – they were not seeing the amazing success at an OVERWHELMING rate that is being “reported” in these TALES. so the parents would jump ship on one program and put their kids into another and then another and then another so the study could never purely be about the CI itself because the program and approaches were being changed over time
we really do need to demand from the FDA that some unbiased research be done NOW
i know of no other device and surgery that is being put into infants whose brains are still developing and skulls still growing that is not more thoroughly studied
whatever groups are to conduct these studies – there must be FULL disclosure. presently most of the “research” being done on CI is financed and even at times conducted by the CI industry and does not investigate the psychological impact of being implanted
i think it is inevitable that some parents will pursue these devices – i just wish that they did not deny the visual acuity of their children and that they could ensure that the child understood that the parents love them completely and endlessly for who they are – a deaf baby
i know they do but the message doesnt always come through at the right frequency
we all need to unify to advocate for academic excellence and language rights for d/Deaf children regardless of whether or not they have a CI
by language rights for US d/Deaf kids – ASL and English
peace
patti durr
January 18th, 2008 at 11:06 pm
Patti,
Actually success in AV is not defined by the ability to hear and speak but, rather, by language. My daughters were not able to “graduate” from their A-V therapy until their language had caught up to their normal hearing peers. By language, I mean vocabulary, comprehension of connected language, reading comprehension, etc. All were thoroughly evaluated once a year. When I talk about my younger daughter completing her AV therapy at age 6, I always state that it was because her language tested age level to two years above in all areas.
With CI kids in AV therapy, that they can hear is almost always a given, and, if they don’t have any oral motor, apraxia or other speech issues, their speech develops following a very natural progression. It is the language that is the key of the work done in A-V therapy.
January 18th, 2008 at 11:12 pm
When Rachel shared her phenomenal experience, her credibility wasn’t disintegrated by the readers. Susanna tried to destroy the credibility of Aaron, exhibiting no inclination in pursuing an open discourse with others. After several disruptions, she was booted after she reprimanded the blogger about the “detrimental” effects of the post on hearing parents, showing her intention in blocking the reporting of complications with cochlear implants.
Anna S and Melissa educated the readers, dispelling the misconceptions
January 18th, 2008 at 11:20 pm
Melissa,
You and several other parents with CI kids are just now entering DR, a primarily Deaf-centric blog. (Some people will claim otherwise.) You are going to get bombarded with attacks from Deaf extremists here. However, there have been many readers here at DR who want a balance of views besides what the extremists offer here. The Deaf extremists want DR to be Deaf culture/ ASL only and that’s the problem, there’s not a balance of views here on DR.
You and other parents are giving your views of the CI community, another side to the deaf community. There is much more to the deaf community besides ASL/ Deaf culture, and we all need to see the diversity. Hang in there, some of us will understand what you’re trying to convey and others won’t. It is a blog, after all. But you never know if something you say may affect another deaf person and how he/she will view things later on in their lives.
January 18th, 2008 at 11:25 pm
Terribly sorry to hear this, Erick. I feel for you. Thanks for sharing this with everyone here. It is very important for many people to check out the doctor’s medical background and be sure to ask them around about the outcome of their surgery. A several years ago I had a breast reduction surgery due to my long history of back problem. I carefully asked around, researched the doctors’ background and many more. My surgery went well with no side effects or damaged
In my own perspective … Being Deaf is not a life threatening. It is not contagious or disease too. I born deaf and this is how I am. I don’t think I will ever get one one for myself. I cherish my important part of my body -brain. if I choose to have a CI surgery .. I will end up having a migraine, not having a MRI, and many more — . I wear hearing aid only when I have to stop hearing the nasty tinnitus. Hearing aid usually gives me dizzy too. I have to bear with this everyday. I easily can take it out! Nothing inside of my brain!
CI victim users must be heard. Again Thanks for sharing this with us. However I highly respect the CI users who choose not to sign or sign. I met a nice young fella CI user at the meeting yesterday. He graduated from Gallaudet ‘06. He does sign! I respect him because we were ASL-ing away!
January 18th, 2008 at 11:28 pm
Thank you, MZ, for trying to maintain constructive dialog. I can see it’s very difficult, when some don’t want the truth regarding cochlear implant complications brought to light. Keep it up!
January 18th, 2008 at 11:34 pm
anna s, then go tell FDA to revise the risks on their website, hmm? Until the government says it’s safe for CI implantees to play contact sports, I’m standing by what I said.
January 18th, 2008 at 11:48 pm
Deaf Pundit,
Many children still play sports even with prosthetics, and I’ve had friends who had pacemakers installed in them due to defective heart defects play soccer. I even played baseball as a little girl as long as I had my baseball helmet on.
The FDA would caution that anyone with glasses not play sports otherwise the lenses would get cracked and pierce that person’s eye with broken glass, yet people with glasses still play sports.
January 19th, 2008 at 12:07 am
Erick,
As I read your blogpost, I felt and still feel the great pain for you! I can envision a mental picture of the dire suffering you have endured following the CI surgery for the last decade.
I hope you have already filed a lawsuit against the surgeon for “malpractice” as well as for your emotional drain and mental strain.
January 19th, 2008 at 12:09 am
I’m aware that many children play sports with prosthetics, and so on. Yet, the FDA only mentions about CIs and contact sports, and nothing else for glasses or prosthetics. I’ve googled it.
And common sense would dictate that a glasses wearer would wear goggles in contact sports situation.
People do what they’re not supposed to do all the time, but when it comes to CIs, all of the sudden, everyone’s perfect.
That scares me.
January 19th, 2008 at 12:24 am
Patti,
Could you just take your message above and start speaking around the country? It deserved a standing ovation.
January 19th, 2008 at 1:04 am
Anna S.
Susanna wasn’t booted off just because she’s seen as CI militant. That is between her and MZ.
Between you and me, I’d like to clear up the air on that.
I didn’t realize how harsh it is in responding to your own statement (see #11). I did clarify my position in comment #19, but seems that it is not enough. what I meant was that I was sorry that it was how you viewed about a deaf baby, even your child, because it is not how I would view. A baby – deaf or hearing – would be perfect! That was honest. It was not intended to be malice. And it doesn’t make one a fanatic or a militant but that really doesn’t matter to me.
To be fair, when I first posted a comment in this post, I was just making a general opinion about the post. You put yourself up to dispute with me, so I responded. If my honest response made it hurtful, I sincerely apologize for that.
Best of luck to you and your son journeying.
January 19th, 2008 at 2:54 am
Brian Mayes (#22) said: “This blog was uncalled for and guilt driven, it does not promote constructive dialog. It is way too one sided.”
Actually, I’ve seen hundreds of articles about how wonderful cochlear implants are. I enjoyed reading this one for a different perspective. Keep ‘em coming ….
January 19th, 2008 at 7:45 am
Lack of statistics on CI problems is the only tip of the iceberg. Please trust us as we saw many CI failures first-hand. Many human beings with CI problems left the CI community, therefore many parents are unaware of how serious it is. We need transparent and solid data. I do not want you to think I am against CI. I am only concerned about many and many CI PROBLEMS untold. It is not wise of anyone to say everything is fine.
Parents, doctors, deaf community, and all others: are you willing to work together to have FDA to mandate CI data recording system? It is like everyone will be doing for a good cause. It’s a win-win situation. Do I hear aye?
January 19th, 2008 at 8:00 am
One more thing, I personally witnessed a CI person with eye twitching problem. I am not lying.
January 19th, 2008 at 8:08 am
Yes, we do need a record of successes and failures. It seems that more successes come from the implanted babies than from older children/adults…
As for Bi/Bi success and failure rate… that is another story, having nothing to do with Erick’s testimony. One could go over to Berke Outspoken to find out the state test scores on several deaf schools and talk about it over there.
Good luck, Erick.
January 19th, 2008 at 8:50 am
We need to obtain the significant records from the NIH, FDA and Audiology Association. However, since the FDA not-yet-approved to have 6 months old or over infants to implant in about 2002.
Therefore, we have no idea how these CI infants are doing nowadays. We would want to hear from the early-age CI users in about 10 years from now. Then we’ll know the answer.
The CI users who received the CIs late in their life are having some difficult times relating to the health problems nowadays. We already know the answer.
January 19th, 2008 at 9:04 am
Melissa #49 – thank you for clarifying u r talking about “language” – i need some help here – the testing and evaluating of your daughter re: language
here by “language” – u mean English language correct? which u seem to be indicating that your daughter acquired via spoken/auditory A-V training?
u say
“When I talk about my younger daughter completing her AV therapy at age 6, I always state that it was because her language tested age level to two years above in all areas.”
u mentioned her reading advancement also
to me this is a pretty exceptional kid – right? its not typical for most 6 year olds to be 2 years above in spoken or written English?
i am assuming by “two years above in all areas” you mean above her hearing peers?
i am happy for you and for her. LANGUAGE skills are really really really important
im just wondering about how a visual LANGUAGE – ASL – might piece into your daughter’s life. Clearly she is exceptional and could handle 2 languages
im asking this peacefully – not judgmentally – i still dont get why some parents (deaf or hearing) object to their deaf children learning a natural sign language in addition to learning spoken/written English
if folks r so willing to have risky surgery performed on their babies with an uncertain outcome and possible physical adverse effects – why wouldnt they also give the child a visual language as that has proven to be very helpful in hearing and d/Deaf babies
i know some parents say it is hard to access sign language where they live but i have been reading some of the parents with CI kids blogs and u can see that the parents are very very assertive in going out of their way to get what is BEST for their kids, to demand proper support and services but none of them mention ASL services
when i ask about this – they say well none in my area, not really viewed as necessary or important, no one in our household signs, etc
i know that school systems are lousy about valuing ASL and providing good ASL therapists but if parents started asserting their right for such u can bet it would happen – ASL specialists would come into the home for all the family to be able to learn
supply and demand
again – im asking this question in peace cuz i still dont really get the reluctance to raising a kid bilingually
melissa – if u rather we engage in this dialogue elsewhere – let me know where to meet ya
MZ again thanks for generating this series
i havent read the previous entry where the booting happened so wont comment here on that until i have more info
ERICK – thank you for sharing. i will keep you in my thoughts and prayers
be well
much peace
patti durr
January 19th, 2008 at 10:03 am
In 1997 the doctor was doing “groundbreaking work?” Are you sure about that? CIs had been around for about 2 decades.
1-2 cups of blood, ten times a day… did you have to go in for a transfusion?
He offered you a second CI? Do you mean bilateral? They weren’t really being done by American surgeons then… was it to be his first?
I’m beginning to wonder if that surgeon had ever done a cochlear implant surgery before. Sounds like you had the worst ENT in the whole country. I have heard CI stories before, but never like this. Today’s adult CI surgery is outpatient, meaning they walk out the same day, just like going to get a tooth pulled.
January 19th, 2008 at 11:07 am
Patti,
Yes, I am speaking about English skills.
As to why my girls don’t know ASL – They haven’t needed it. That doesn’t mean that, if they decide they want to learn it that I would stop them – not at all. If they came to me and asked to learn it, I would find them a class and make sure that they got to it. By the same token, I wouldn’t force it on them. At 20 and 13, they are both old enough to decide for themselves.
I think that this ties into another issue that’s been discussed since Mishka first posted Rachel’s story. That is, have my girls felt welcomed by the deaf community? What would motivate them to want to learn ASL and become a part of it? For us, it hasn’t happened.
However, I have one close friend whose daughter is older than Rachel and was also one of the earliest kids implanted at age 2. Her English language skills are phenomenal, and she recently graduated from a major top university. She grew up in a different area of the country from us, and she had ongoing contact with kids who signed but also spoke some, one friend in particular. In college, she decided to take an ASL course, and she now can use sign, albeit not fluently because English is still her first language, but she can do fairly well. My girls never had the early experiences that she did and, therefore, don’t have the desire that she did.
January 19th, 2008 at 11:14 am
Patti,
One more thought – Let’s say that my girls wanted to learn ASL now. As with any foreign language, it’s not enough simply to learn it in a class. You have to practice in order to truly learn it. Rachel is fluent in French. In addition to studying it for 5 years, she has also been on 3 exchange programs to France where she lived immersed in the language for weeks at a time. If my girls decided to learn ASL, they would need to change their lives in order to truly learn it by using it. Yet, as with most people these days, their lives are incredibly full already. Rachel is in college with the academic work, the extracurricular work, which for her is as time consuming as her class work as she is very involved as a staff writer and photographer for her school paper. Plus, she has good friends at college whom she likes to do things with in the little free time that she has. To ask her to join the deaf community would mean to make major changes in her life in order to be able to do that now. Again, what is her motivation?
For my younger daughter, it’s similar. She’s in middle school and is also very involved with her Girl Scout troop and other after school activities. It is not so simple to add major activities to an already full plate. It would have to be something that she very much wanted. To want it, she would have to feel a need, but she hears incredibly well, even in noise thanks to her bilateral implants. So, she doesn’t feel a need.
January 19th, 2008 at 11:24 am
Just a thought: Melissa, if your girls haven’t had the desire to learn ASL, they must be fully Hearing in function and psychology. They are able to freely share and intimately converse with anybody else they want to in the Hearing community, day and night. (On sleepovers, do they giggle and chat in the dark as freely as their hearing friends?)
More power to them, but they may be walking a thin line between being Hearing and being isolates in the wider community. (Refer to Gina Olivia’s book.) No one ever really knows where they belong until they have lived in both spheres and can sort out where they are most like others. This is only one of the reasons so many of us recommend ASL along with AVT to cover all bases.
The point here is that ASL is disposable as needed; CI’s are permanent, so the CI should not become a reason to narrow down the communication avenues.
January 19th, 2008 at 11:33 am
Hi MZ,
Sorry took me long time to make that video and also I just wanted to use 3 topics to save my neck to enjoy this holiday MLK’s weekend with my family. Pls do go view on this video link: http://www.deafvideo.tv/watch/5420
Thanks and hope you will have a good relaxing MLK’s Day!
January 19th, 2008 at 11:53 am
Thank you, Mishka for keeping this CI series going in regards of pros/cons and keep this in a neutral way. I’m no fan of CI though but I keep my mind open to learn more about CI and risky surgeries.
I personally don’t think the deaf babies and children should be implanted until they get to the age of 18 so they can decide to go for it or not. I truly hope the parents wouldn’t put so much pressure on their children to be implanted when they come to age of 18. I’ve been hearing a lot about the parents pushing their teen/adult children to be implanted. Even some parents forbid their teenage/adult children to be around Deaf people, even not allowing them to date or marry Deaf! I think I may use this in my future vlog one day.
Once again, Mishka, thanks!
Misha
(not to confuse anyone, no, I’m not Mishka…just Misha)
January 19th, 2008 at 12:46 pm
apology accepted.
V as in peace.
January 19th, 2008 at 12:47 pm
duh, the above is for “brenster.”
January 19th, 2008 at 1:16 pm
Dianrez,
My girls had plenty of sleepovers through the years. They left on their processors until the last minute. I think that a big part of the issue, though, is who their friends are and who their friends’ parents are. Sensitive children are raised by sensitive parents. Their close friends over the years have been understanding and accepting of the girls’ hearing. I know that with those who can’t hear well and rely on lipreading, things are harder because, regardless of how sensitive children are, they can have limited patience. The difference for my girls, though, was that they could hear very well. While it wasn’t perfect, their friends could understand that they couldn’t hear with their processors off, that they occasionally needed to repeat, or that they needed to adapt certain games. Kids can be very resourceful. When Jessica was in 3rd grade, she had a friend whom she had frequent sleepovers with. They invented some sort of game with flashlights that they would play in bed at night after the lights were out and after Jessica’s processors were off. I would hear them giggling away and Jessica talking at times even though she couldn’t even hear herself.
One important thing in all of this to me is that these kids, regardless of methodology and communication method used, are raised with a sense of self worth and comfortable in their own skin. I’ve told my kids many times that no one is 100% normal, whatever that is, or perfect, that we all have things that we deal with but that some are just more obvious than others. I can’t play sports. I just was born terrible when it comes to them. There were some social activities that I missed out on when I was a kid as a result. So, I found activities that I could do that involved what I was good at. For my girls, their deafness and the occasional limits that they have they have dealt with the same. They find ways to adapt and go on. As long as they are happy overall with their life and their friends, that is what counts.
January 19th, 2008 at 1:44 pm
Melissa
thanks for popping back in and responding to my inquiry
i havent been following all of the postings so i didnt realize u were the mom of adult / youth with CI
ur response uses words like “force them to learn ASL” but when u talk of your one daughter studying French you say it with pride
i guess this is what is puzzling me – why is the studying of English and other foreign languages given a high prestige where as ASL is regulated to a “needs” only status and not as a full language?
our children are learning Hebrew not because they have a need to but because we valued they have this experience while they are young and it is easier to acquire the language so that as a adult Jewish people the language and prayers will be familiar to them
Again i really want to thank u for answer my question and i apologize for not making the connection of who u r and that your girls r grown. i have no doubt that if and when your girls decide to learn ASL they will master it quickly as they seem to have demonstrated an aptitude for learning languages
often with the acquisition of ASL we see that attitude plays a key role especially given the history that ASL has often been banished or viewed as taboo in some Deaf people’s lives
i can not tell u how many of my college age students arrive with now sign skills and within 2 years when i see them again – they are signing far better than i
again – i respect the choices you have made in your life and your answers help me get a better understanding of how your center informed some of your decisions and the decisions of your children – the view that ASL is a forced option and not a full-fledged language of equal value and interest and dignity as say French or German or Spanish etc
if you or your daughters are ever in rochester, ny – id be happy to visit with u. non-signers and non-signing parents are indeed part of the Deaf community
the ASL requisite is for Deaf Culture which exists within the Deaf Community which both exist within the Hearing World
we r all one family – the human family
much peace and again thanks
patti
January 19th, 2008 at 2:36 pm
Melissa, you said: One important thing in all of this to me is that these kids, regardless of methodology and communication method used, are raised with a sense of self worth and comfortable in their own skin. I’ve told my kids many times that no one is 100% normal, whatever that is, or perfect, that we all have things that we deal with but that some are just more obvious than others.
I think that is key and every parent should do that with their children. Because that is absolutely on target. Historically, that has not been true in the Deaf Community, sadly. I am hoping at least with the next generation, this will change and for the better.
January 19th, 2008 at 3:14 pm
Patti,
I meant nothing negative about ASL by my use of the word “force,” only that it wasn’t something that, at my girls’ ages I could insist they do any more than I can tell Rachel at age 20 that she now has to go learn Spanish, even though in the U.S. today it would certainly be beneficial. I actually did ask her to choose French as her foreign language in high school because I studied it for 8 years and so could help her with it, whereas I’d be useless with Spanish because I never studied it.
January 19th, 2008 at 4:50 pm
Anna #18
That was uncalled for! That is exactly my fear of denying a CI child from the deaf culture and ASL!
Again, Anna, that was absolutely downright mean of you to say that! This is not about you. This is about Erick who had a terrible time after his surgery. Try to present more sympathy towards him, can you do that? The whole point of the CI series is to see both positive and negative of the surgery itself and then the CI progress NOT about insulting deaf people nor parents of CI kids!
By the way, Erick, your experience really was an awful one!!! I feel for you! I had my own CI surgery 5 years ago. I do not at all blame you for not wanting to continue with the CI. You have every right. I also sense fear…fear of the symptoms. I have intense fear of vertigo episodes. I will be posting my own story later on perhaps this week.
I think some readers are right, try to find a top-notch surgeon. How about Johns Hopkins in Baltimore? they have superb surgeons. Even though my experience was negative it does not mean my surgeon caused my reactions. I dont blame him but i have ongoing fear that i will be knocked down again with vertigo.
Anna, try to be more understanding and kinder towards people who’ve had bad experiences. I am sure your child is doing very well. I applaud you and your child BUT please do not deny his/her own heritage which is DEAF CULTURE!
January 19th, 2008 at 6:17 pm
Hi all
I am an adult CI recipient in Australia. My surgeon and audiologists spent hours talking to me about the possible things that could go wrong with the surgery and about my expectations of my hearing experience afterwards. I weighed these up and decided to have the CI. It gave me my life back and works wonderously, joyously well allowing me things I thought had been denied to me forever (I had been a piano teacher and I had to give up playing. Now I enjoy playing again)
I have heard CI stories where things have gone wrong. But with all surgery there is a risk; having a baby can even go wrong – even though in the majority of instances everything goes well.
Erik, you need to contact the manufacturer of your CI. They will tell you who to go to for explanting. They may even examine you themselves and be present to sort things out for you. My manufacturer, Cochlear, has a commitment to it’s implantees. They want to know why it went wrong and how they can avoid this kind of thing in the future. If you CI is Cochlear and you don’t know who to contact let me know and I’ll find out for you. (However, while it’s not possible to tell without hearing the doctor’s side, from your description it really does sound like a bad surgeon.)
On another point 3 babies are born deaf every day and 90% of these are born to hearing parents. So how can these children be considered to have a heritage of Deaf Culture? Surely their culture is hearing and the parents want their child to experience the joys of hearing – not to mention how much easier it is to be hearing in a world geared to hearing. By denying their hearing culture aren’t you, the Deaf culture, doing just the same as you claim the hearing culture denies yours?
January 19th, 2008 at 8:48 pm
Anna S.
#47
Oops i think i jumped at you before reading the rest of the post. I apologize. I wanted to say that I understand completely why you dont want your child with the “fanatics” but you will allow your child to be with other deaf kids who are “safe.” Makes perfect sense. I was overprotective mother of 2 hearing kids (both are in college now and both have ADD/dyslexia) and sent them to a private school specialized in education meaning all of the kids had the same thing. I didnt want them to mainstreamed because i was mainstreamed myself and it was very difficult. Anyway, now i get what you are saying about not wanting your kid near fanatics.
I do agree that there are extremists and that makes is very difficult for a healthy dialogue as Mishka wanted all along.
I am pretty sure that she would not allow deaf extremists either. Ask her but shes taking a break so we ll have to wait for her to come back, smile.
January 19th, 2008 at 8:54 pm
I am catching up reading up to #59 and i wanted to response to Brenster’s comment. OF course our children are PERFECT!! That is unconditional LOVE!
No question about that.
January 19th, 2008 at 11:23 pm
To Felicity in #79:
For a better understanding about the CI surgery, I would appreciate it very much if you would be so good as to give us a list of “the possible things that could go wrong with the surgery and a list of expectations of (your) hearing experience afterwards”?
Another question: Did the surgeon who read you the
list advise you that once you accepted the terms you could not sue him if something went wrong after the surgery?
Have you heard of people who have won a lawsuit
for “malpractice” after agreeing to have a surgery?
I would appreciate it if you would addd any
information you think we would be interested.
January 20th, 2008 at 7:02 pm
In reviewing this long series of comments, at one point I wanted to stand up and scream.
It was when ASL was suggested as the reason for poor English. That should be dismissed because there are many thousands of ASL-using Deaf people with excellent English.
Likewise, there are millions of normally hearing people with poor English writing skills. I know this for a fact as I have met and talked with some of them using writing. Some were postgraduate students.
It is the ONSET of language, no matter what the language is. The earlier the child can fully communicate, the earlier the growth of skill in ANY language mode.
January 21st, 2008 at 1:41 am
Hello all,
I haven’t read everyone’s comments yet, just the first three. So, this is in response to the general questions-
1) The doctor- He was actually very highly recommended. He had done a lot of CI surgeries. At that point, I think I remember him saying that it was around 300+ implants that he had done before he implanted me. He originally worked in New York City, and he transferred to Syracuse, N.Y., a few years before I had my CI implant installed. We did research, and picked the best we could find at the time.
2) The operation was not botched- in fact, I recovered within 3 days and was back to normal within 3 days. The blood and all lasted the first 3 days, then everything started to heal. I was told that I was healing pretty quickly for someone who had a CI.
Immediately when I woke up after the surgery, I needed to go to the bathroom. Everyone was trying to get me to stay in my bed. I felt well enough despite the huge bulge in my head to stand up and walk to the bathroom without assistance. They were amazed by this… As apparently, it is normal for the CI patient to be weak for several hours after the operation.
The swelling, blood, etc., were a result of the fact that CI’s are unnatural, and not meant to be in somebody’s body. Imagine having a hole carved into your skull, and then 2 quarters put together, covered in rubber… Implanted in that carved ditch in the skull. Is it natural?
In other words, are you really surprised that there was blood and swelling? CI surgeries are extremely invasive, regardless of how wonderful the doctor is, or how qualified he/she is. It is simply unnatural.
3) I don’t use any hearing aids, nor do I use my CI. I have reached to the point in my life where I have come to accept that I am Deaf, and take pride in it. I have come to realize that Deaf people are outsiders in this world, no matter what you do. Regardless of how many CI’s are in your skull, you will always be perceived as Deaf (in a bad light) by people in society.
So, why should I want to be like a hearing person?
Why should I CHANGE MYSELF TO FIT IN?
Why is hearing better?
It comes down to being honest with oneself.
I’ll answer the other questions after this post.
January 21st, 2008 at 1:51 am
To those that have offered congrats:
Thank you, much appreciated.
) Our new baby son is due to come out anytime in the next few days. Hopefully, he’ll be Deaf like our 1st son. If he’s not Deaf, we’ll still love him all the same.
Brenster,
Absolutely, I agree 100%. This shows the true mindset behind doctors that are being paid by CI corporations.
Regarding the side effects-
The CI operation itself went very smoothly. I healed quite nicely. However, the muscles healed more tightly than what it was originally. (Imagine cutting a string in half and then tying them back together. It won’t be as long as the other original string.)
EVERYBODY’s muscles are cut, they have to be… In order to reach the skull. There is no way around that. Some people’s muscles heal just fine. It really depends on the following factors:
1) Was the re-connection as minimal as possible?
2) The person’s ability to heal
3) Any other unforeseen issues
It really comes down to the fact that it’s a roll of the dice- Russian Roulette, so to speak- The skill of a surgeon is one thing, but even the best could not prevent certain things from happening.
It is a risk that every CI patient has to take. (Unless it’s a parent that gave their child no choice- then it’s a risk the parents are taking)
January 21st, 2008 at 2:10 am
Jordo-
No estoy seguro lo que usted trata de decir, pero generalmente oye que la gente tiene el problema que deja cosas bien solas.
Robyn and similar comments:
Removal of the CI poses the SAME risk that it takes to install it. This is true most especially when you already have damage done. So, I am waiting until technology has gotten better to the point that I feel safe to have it taken out.
Besides, it takes good insurance, and it isn’t that cheap to take it out. It’s cheaper to get LASIK, and I need that more than a CI removal.
Anna S,
I really do understand your desire to “cure” your son and to “give him opportunities” and to “make his life better” and to “empower him”.
As a parent, I really can understand that feeling of wanting to make things the best for your child. No doubt about that.
But, on the other hand, I would never harm my child for something as trivial and unnecessary as hearing. I could never subject my Deaf son to drilling in the skull, cutting his skin… All in the name of fitting in… All in the name of “making him better”.
Opportunities aren’t made by hearing levels. They are made by those that have a brain, and worked hard for it. I was an ASL professor, and at one time, I was paid $33.00 an hour. During college, I fixed/built computers on the side for $80.00 an hour.. That is so much more than what most people make, and I couldn’t hear.
So, how does giving a child a CI give him/her opportunities? It doesn’t. It just gives an illusion of opportunities, and an illusion of success.
Another thing to consider- when your child grows up and socializes with Deaf people and realize that he has this thing put in his head, because his parents couldn’t leave well alone… How do you think he’ll feel at that point?
I’m not trying to rag on you. I’m just pointing things out. To this day, I do not respect my mother. My wife does not respect my mother neither. And most of my Deaf friends do not respect my mother. Simply because my mother egged me until the point I gave up and had a CI installed to make a point to her.
To this day, I am left with a distaste for my family that encouraged it. In fact, I don’t really allow them to have a much of a relationship with our son because of it.
When people ask me what kind of family I have… I say I have a Deaf family. Later, they’d find out that I have hearing parents and inquire about that. My answer is, they are not my family because they did this to me. My family is my wife and my son(s), period.
So, before you jump around in joy, please consider the future ramifications of your actions. It can backfire, quite badly.
January 21st, 2008 at 2:20 am
Anna S,
I must respond to your comments about a CI being “life enhancing”.
Consider this-
A person without an implant- their lives will be like this:
They wake up, take a shower, shave, get dressed and go to work. End of story.
A person with an implant-
They wake up, take a shower, shave, put on their implant and go to work. In between, they have to go and see an audiologist for constant tuning. They have to get their batteries recharged. They have to fiddle with the wires. Sometimes, they’ll accidentally turn up the volume and give themselves a good shock. Every time they go swimming or do contact sports, they have to take the implant off, and keep an eye on it. If their implant breaks, they have to hope their insurance will cover it. They have to constantly conceal the equipment. They have to spend hours training to understand what they are hearing. They have to spend a lot of money (or their insurance companies do)
And by the way, you’re right about the taxpayer. But what about patients that needs good insurance? CI’s cost so much that it delivers a big blow to insurance premiums. How about that? Taking health insurance away from elderly people is worse than taking tax money from healthy people.
Plus, they have to deal with the ‘foreign feeling’. CI’s is a crutch… It makes the Deaf person MORE DISABLED… AT A PERSONAL COST… So that hearing people can be happy.
A normal ASL signing Deaf person doesn’t have to deal with that crap. A Deaf person has the right… To be happy with the way they were born.
You are talking about taking away that right, and forcing Deaf people to conform to the rest of society.
That is like telling black people that they need to pull their pants up, take their combs out of their hair and telling them they can’t do hip hop.
It is an insult. That is why Deaf people get angry about comments like yours.
You say that society doesn’t need the extras. Ok. What about people in wheelchairs? Basically, you are saying that we should invent cyborg legs to force the wheel chair bound person to walk so that it’ll be cheaper on society?
You’re saying that a blind person should have a webcam bolted to their head so that it’ll be cheaper on society.
But you don’t see it that way, do you?
I hope you’ll take the time to be introspective.
January 21st, 2008 at 2:28 am
Brian Mayes,
Thank you for your comments. I understand what you are trying to say. I can understand that you feel that it’s not anybody’s place to dictate what one should do with their lives.
But, think of it this way-
Why were CI’s invented in the first place? Hearing people felt that Deafness was a problem. So, they decided they wanted to try and cure it.
It wasn’t a Deaf person that invented the CI. It is the hearing society’s indirect way of saying “you are imperfect, and I will fix you”.
So, who’s doing the ordering around?
I do understand that you feel that this blog is too negative (I apologize, I must defend MZ)- but consider this:
Countless of CI pages praising CI’s
Widespread suppressions against the truth
Oral community using the CI to advance their cause
Doctors saying it’s good for ya, then running with the money
I think there needs to be a balance here. There needs to be more websites presented with the reality of having a CI.
MZ is doing a service for the Deaf community, bringing the truth to light. People that defends the CI is only harming the Deaf community- by enabling hearing people to continue their cycle of discrimination.
We as a minority has not advanced, because there are too many Deaf people that are unable to separate their hearing brainwashing and unable to accept the truth.
I really do understand that the CI community feels that having a CI is a “culture”. But honestly, it’s just a medical thing. It’s an association of lab rats.
I apologize for me being straightforward. I just say it as it is. I don’t have time for BS.
January 21st, 2008 at 2:37 am
kbjensen,
That’s the spirit!
) We are proud too, and our son (ASL Deaf) is doing beautifully and is ahead of the other students at school.
Everyone else,
I can understand that the CI has become a cultural issue. Obviously some people here are debating for their cause. And I respect that, either way.
We all need to separate miracles and audism. We need to separate culture from medical. We need to separate oralism and CI-ism. When we have done that, we’ll come down to the very basic truth.
And that basic truth is- CI’s hurt people. Ci’s are unnatural.
But most of all, it hurts the Deaf community. Why? How? It instills a false sense of confidence in the hearing community. Hearing people are saying “Well, those people got CI’s, why can’t the rest of them do that too?”
It slows down our progress. It slows down our accessibility to captioning, to interpreters, to whatever services that are out there for Deaf people.
If there weren’t people out there pushing CI’s, and the hearing community has accepted Deaf people… Then maybe we would already be seeing touch-screens at McDonalds and we’d be able to order food like everybody else. Maybe we’d have every single thing captioned and accessible on TV. Maybe audism would not be as much of an issue.
But, no, thanks to CI’s, schools for the Deaf- havens for Deaf people- the one place Deaf people can feel normal- are disappearing. Thanks to CI’s, Deaf people are not as well educated as they were 20 years ago. Thanks to CI’s, we are continually being oppressed.
Of course CI’s are not the only reason. But, it sure as heck is helping slow down Deaf progress.
January 21st, 2008 at 2:44 am
Anna S,
Quoting you:
“fanatic is one who can’t change his mind and won’t change the subject. Sir Winston Churchill British politician (1874 – 1965).”
Unquote.
My response: What about you? What about changing your mind? I have an implant. You don’t. So…
Quoting you again:
“If you allow one fanatic to stay, the you shall allow the opposite to stay.”
Unquote.
My response: What about you? If MZ allows you to stay, it could drive away a person that’s not a fanatic.
I’m not trying to offend you. I’m trying to put things in perspective. You’re continually defending your opinions rabidly… And you don’t even have an implant in your skull. In fact, you assigned your child to bear that burden.
So, please let’s not get irrational here.
On the brighter side, I agree with you, it is nice to discuss things… RATIONALLY. And, education does play a role in the CI issue. So, it is not entirely off the point.
Carry on.
)
Well, to be fair, you aren’t changing the subject neither.
January 21st, 2008 at 2:48 am
Melissa,
I really do resent the use of the term “extremists”. You’re saying that these so-called “extremists’ ” opinions are not valid.
Just because they believe in one thing and they stand by it- it doesn’t make them an extremist.
If you would like to argue against that, then I say you’re a CI extremist. Does it feel good to be labeled that way?
I’m tired of non-ASL people saying that proud Deaf people are extremists. Proud Deaf people have opinions- and they are based on their experience.
Everybody’s opinion here is valid- for whatever cause they are fighting for. No need for you to de-validate Deaf people’s opinions… We have enough hearing people doing that.
January 21st, 2008 at 2:54 am
Fran-
This doctor at the time was very active in improving the CI for the CI corporation. While being a medical doctor, he was also a researcher for the CI corporation.
I was among the first few to have the cut behind the ear, rather than the big cut on the side of the skull. That was a relatively new thing back in 1997.
He offered to give me a second CI, yes- bilateral- so that he could study the results. He admitted to me that all the other people that he had implanted was not educated enough to describe the sounds to the doctor.
That was not a surprise to me because a lot of orally educated people are not as well educated as ASL Deaf people due to spending too much time on their voice rather than the subject matter in the classroom.
Anyway, he wanted to make comparisons between having one CI versus having two. He wanted to compare an orally educated implant patient versus an ASL educated implant patient- is it any different for each party? Does one learn faster than the other? Does one understand the sounds better than the other? What does the sounds I hear sound like exactly? How do I interpret sounds? How do I perceive sounds?
These were some of the questions the doctor wanted to know.
January 21st, 2008 at 3:00 am
Anna S,
I apologize again if it seems that I am picking on you. I am responding as I go, since I actually haven’t seen this post until just an hour ago. (I have a very busy lifestyle)
Anyway, just for your information, the idea behind Deafhood is that everybody unites together… Including oralists and CI implant users… It has nothing to do with being ASL-Deaf.
Deafhood is a British idea, a solution to the problem in England. It has nothing to do with what is going on in the US. Deaf people for some reason jumped on the bandwagon, not fully realizing it also means accepting those that are really members of the hearing community, although technically Deaf.
So, in other words, Deafhood groups is actually good for your son. Basically, it is clear that you do not really understand what is going on. Because, I mean, come on. Deafhood is an “accept all” philosophy. And you’re talking about going against that?
It is very clear that you have not truly taken the time to explore them. It is clear that you have made a snap decisions based on little evidence… And very much likely based on hearsay.
You’re not allowing your son explore all facets of the Deaf community. You are not allowing your son make the decisions for himself. You are suppressing your son as a Deaf person.
And quite honestly, that is very… Disgusting. My mother did that to me, and I don’t like her for that. Therefore, I don’t like you.
I apologize. But, that is just one of my pet peeves… People that put down the Deaf community based on nothing.
January 21st, 2008 at 3:11 am
Anna S.,
My apologies again.
Quote:
Some kids’ literacy development have been slowed down by ASL only instruction in the classroom.
Unquote:
A lot of people like to think they know ASL, when they really don’t. I know this for a fact, because I was an ASL professor, and I trained interpreters. A lot of people will vehemently state that they are skilled in ASL… When, in reality, they are signing in PSE, or even SEE. I have seen this in many places.
Hearing people generally are NOT native ASL signers. I have only met TWO hearing people in my whole life that signs like a Deaf person. (And I have met so many people in the Deaf community- Deaf and Hearing alike) That’s just TWO.
So, those statistics are very much likely based on HEARING PEOPLE THAT THINKS THEY KNOW ASL… INSTRUCTING DEAF PEOPLE IN THEIR HACKED UP VERSION OF ASL… And the result is the Deaf student is saying “what the heck are you saying?”
I have seen pure Deaf teachers teach Deaf children, in pure ASL- and these kids have better written English than those that weren’t instructed by a Deaf ASL teacher.
Another factor that hinders Deaf people- parents that do not take the time to learn their children’s language. Parents like to force their child to “speak” the language they speak. And many parents do not sign at all. And they wonder why the kid isn’t doing well? (Somebody needs to bang their head really hard on a tree, here.)
If you can name one CEO of a Deaf company… That has a CI, then I’ll be impressed.
I can easily name 3 successful Deaf CEO’s that are millionaires. And they are ASL signers that don’t wear a CI.
Again, a piece of machinery does not determine one’s success. Only a person with a brain of a goldfish would think that.
I’m not trying to offend. I am just saying it as it is. And I want you to know that I respect your opinions, and I encourage you to continue posting. Please.
Again, by no means am I trying to de-validate your opinions and feelings. I am just trying to educate you, as I have done many times before with other people. Deaf progressivism is an ongoing battle, and I am all for Deaf progressivism. CI’s have no play in Deaf progressivism… It’s a medical thing, nothing more.
January 21st, 2008 at 3:21 am
Patti,
Very well said. Couldn’t have said it better. It’s always nice to see someone as refined as you to put things nicely & clearly that someone as rough (maybe uncouth) as myself couldn’t. ;o)
At any rate, to those that read her message should take her seriously. She was my professor for one quarter way back, and she has a good head on her shoulders.
She’s absolutely correct about perceptions changing immediately with the speech. I have the same problem. My wife does not speak clearly at all, but I can. I do see the differences in how people treat her and I. They look at her as though she is mentally retarded. But in truth, my wife is as well educated as I am. In fact, she has much more trivia knowledge than I do. And they dare to look at her as beneath me? That upsets me.
This applies to the CI mentality. Certain people think that having a CI makes them smarter. Well, they say the same thing about wearing eyeglasses. Heck, is a blind person smarter when he/she wears sunglasses? Are they smarter when they have a seeing dog?
Unfortunately, 75% of humanity are fools. The other 25% has some sense, but the 75% overwhelms the 25%. What can we do, right?
January 21st, 2008 at 3:38 am
Melissa,
Quoting you:
One more thought – Let’s say that my girls wanted to learn ASL now. As with any foreign language, it’s not enough simply to learn it in a class. You have to practice in order to truly learn it.
UNQUOTE.
Thank you so much for making that statement. Do you sign ASL at home? Pure ASL? With no errors and no PSE or SEE in it? I very seriously doubt that you sign in pure ASL that is grammatically correct. (Based on your view of things)
How many parents do you think… Actually takes the responsibility to learn ASL? How many parents spend as much time on ASL as they do on English? How many parents sign in pure ASL, with no errors, slowness, perfect reception skills, and with their mouths shut? (ASL is not ASL if you are talking and signing at the same time)
I can assure you that, there is not that many parents that does that. So, how can one say that a child is not doing well because of ASL itself? No.
It is simply a result of the fact that the parents put the responsibility of communication on the child… By forcing them to speak/gesturize/write on paper… In order to communicate.
My mother was a PSE interpreter, and she signs in PSE pretty well. Reception skills in PSE is fantastic. But hello… It’s not my language. My mother was very much involved with my school, camp, and whatanot…
Yet, she is NOT an ASL signer.
I have many hearing family members in my family that signs, in SEE.
They are NOT ASL signers.
So, how can statistic takers actually prove that ASL is harming Deaf people? How can they actually prove that ASL is a bad thing? They can’t.
However, there is a twist in all this- research shows clearly that the majority of Deaf children from an ASL signing Deaf family actually has a better and clearer voice than those that were raised by hearing parents.
It all comes down to education & exposure to the language. People like MZ and myself are unusual. We simply took the initiative and taught ourselves. So, we cannot be made an example out of.
But, I’ll use my wife as an example. She is 100% Deaf. She doesn’t have a clear voice at all. She signs in ASL and was raised using ASL. Yet, she has a Bachelor’s Degree in English. Yet, she was at one time, the head of YLC. Yet, at one time, she was high up at NAD. Yet, at one time, she was the accessibility director at Kennedy Theatre. Yet, she taught at Gallaudet at one time.
So, care to explain that? She was simply exposed to ASL to the degree that it was effective. (Like how hearing children are exposed to English)
Back to the point, I do understand what you’re saying. I really do. Your girls simply didn’t have a need for ASL, in your opinion.
At the same time, if you had exposed them to ASL in the first place… And gave them fair chance- this means giving ASL 100% equality to English in your home from birth to adulthood… Things may be different.
Patti- “needs only language” versus “an actual language”- THANK YOU SO MUCH for making that statement. You’re my hero.
That is another pet peeve I have. People tend to say that ASL is beneath a real language. But I’ve got news for those people- ASL is a real language with a full history.
The fact that your girls chose to learn French over ASL is puzzling and counter to the fact that they’re Deaf. Your pride in that is even more puzzling.
I do understand that you are trying to teach them to be “human beings and to accept themselves”. However, how can they truly accept themselves if they are Deaf, yet do not have the skills/language to operate in their own Deaf community? Why are they not mingling with people like themselves?
It’s the values that the parents instilled in their children. In this case, it’s the values that you instilled in your children.
I’m conflicted. I’m a parent, and in that sense, I agree with you 100%. But, as a Deaf person, I am absolutely disgusted.
January 21st, 2008 at 3:50 am
Vickie Lou,
Well said. I’d like to say that this article, I wrote this a few months ago, as I was interviewed by MZ. It’s been a couple of months since I’ve thought about this CI issue. And I’ve been away from the Deaf online community for several months since I’ve started to work and since my plate has gotten more full recently.
Bearing that in mind, the intention of the article was to expose the unspoken dangers of the CI for the benefit of the Deaf community.
I am hoping that hearing parents that comes across MZ’s site would at least be informed and get the information from the horse’s mouth, so to speak…
Although my experiences with my CI were hellish, I am not looking for sympathy. I am looking to improve the quality of hopefully, countless children… That hopefully got rescued when their parents see this article.
I’ll be honest- I am pro ASL, pro Deaf family, pro Deaf culture, pro Deaf community. And I’m against anything else that are against my values.
I have some strong opinions, and some of the people here have strong opinions too. With a subject like this, it can easily cause an argument and/or a serious controversy.
I encourage people to continue to speak their mind- whether if they are “militant” (This goes for both sides) or if they’re just a bystander watching this whole thing unfold.
I apologize if I have offended anyone here with my plain language and to some, my “extremity” , and maybe my uncouth and vulgar method of expressing myself.
And lastly, I realize I have posted quite several posts prior to this one. I’m catching up to all the responses.
Thank you for taking the time to write here, I imagine that MZ appreciates that a lot, and a good discussion is always healthy.
I would also like to thank those that have offered compliments & comments. I wish I could respond to all of them, but if I did, MZ’s server probably would crash. ;o)
I may come back and respond to any responses. (I will try my best with my cramped schedule) Best wishes to you all.
Sincerely,
Erick Ketcham
January 21st, 2008 at 6:33 pm
Jean Boutcher Says: #82
Firstly, the success rate is exceptionally high – over 90%. The failure rate and surgery problems very low.
Secondly, answering your questions:
“the possible things that could go wrong with the surgery”. The five things my surgeon discussed at length, with both me and my husband, apart from the usual risks of surgery, were (1) damaging the facial nerve and (2) the taste nerve. (3)There was also the risk that the implant would not work for me. (4)My expectations of the implant. (5) They would not be able to get the implant into my Cochlear from some physical reason.
My left ear was implanted and I had heard nothing for 30 years in that ear so my hearing nerve had, had no stimulation in that time. But we chose that ear, with reasonable expectation that it would ‘wake up’ and I had a skerrick of hearing in my right ear (5%) which we/I wanted to save.
“a list of expectations of (your) hearing experience afterwards”?
The surgeons and audiologists were exceptionally clear and even downbeat about what I could expect from the implant. They really did not want to raise my expectations and said at best I would understand speech at worst environmental sounds and it would aid lip reading. I might also have needed remedial hearing training. It was not expected music appreciation would be an outcome.
However, my expectations were higher despite all this. I believed it would work and it would all sound normal to me again. I can’t say why I felt this especially since they had been very, very clear about what I might expect. They discussed about taking the time to learn to hear again; how my brain may need to take time to understand the new stimulus.
However, for me none of this occurred. The operation was routine, out of hospital in 2 days, healed in two weeks, switched on 4 weeks later. I was able to understand speech without the need for lip reading within a few minutes of processor activation although it did sound unusual. I had been warned about this too because it almost is at activation because you can’t take the full spectrum of sound. I expected/hoped it would be perfect immediately (silly me!) but this was due to the hearing nerve waking up. (If you walk into a bright light your eyes take a few minutes to adjust, so why I expected a hearing nerve which had had no sound for 30 years would wake up immediately I don’t know!) But sound improved the next day when I had further programming and things started to sound as I remembered them. I have never looked back. I use a phone, go to meetings, movies, listen to the radio, listen to music and best of all enjoy playing the piano again.
“Another question: Did the surgeon who read you the list advise you that once you accepted the terms you could not sue him if something went wrong after the surgery? Have you heard of people who have won a lawsuit for “malpractice” after agreeing to have a surgery?”
No. There was no talk of anything like this. In Australia this sort of thing doesn’t happen much. There are only about 2-3000 CIs in Australia and while I know of a few implants which have failed (for any number of reasons not necessarily to do with the implant) there haven’t been any malpractice suits that I know of.
Some statistics:
In 2005, more than 65,000 people had been implanted in 70 countries (This was more than 100,000 by Feb 2007)
Reliability:
Cochlear takes reliability very seriously. Any devices which stop working are analysed by a team of specialists to find out why. Four years post implant 99.7% of devices implanted in adults and 99% in children continued to function normally. 15 years post implant, reliability was 96.8% in adults and 92.7% in children. Failures in child implants is largely due to increased risk of trauma in energetic children. Remember that anyone who’s been implanted 15 years has an older technology implant but I know a lady who is still going strong and has been implanted for 21 years.
Assessment criteria:
As a guide line: Open set speech perception <70% better ear and <40% in the worse ear (implant worst ear)OR <50% in better ear
Testing outcomes:
In open sentence testing (ie no visual clues of lip reading and no knowledge of what the subject is) of 92 implantees the median score of understanding was 91%. The mean was 80% understanding. Of those who understood the least (the 1st quartile) 75% scored above 68%. (VIC CIC). Remember most of these people had <50% before implantation, so even those who scored poorly were still scoring better than pre-implant.
Regards Felicity
January 22nd, 2008 at 11:40 am
Erick said:
” I do understand that you are trying to teach them to be “human beings and to accept themselves”. However, how can they truly accept themselves if they are Deaf, yet do not have the skills/language to operate in their own Deaf community? Why are they not mingling with people like themselves?
It’s the values that the parents instilled in their children. In this case, it’s the values that you instilled in your children.
I’m conflicted. I’m a parent, and in that sense, I agree with you 100%. But, as a Deaf person, I am absolutely disgusted.”
Erick,
I don’t understand why you are “disgusted.” There are so many things that go into making us who we are, and for Rachel her deafness is just a piece of who she is. Her deafness does not define her. It certainly has affected her life, and she readily acknowledges that. It has brought people into her life who would not have been there otherwise. She is still incredibly close to her former A-V therapist, who has become like a favorite aunt to both of my girls. What exactly defines “people like themselves?” Why does her being deaf mean that she must base who she identifies with and who she socializes with on this alone? She is a photographer who loves her work on her school’s newspaper. Her close friends at school work on the newspaper with her. They have that interest and effort in common.
We are Jewish. For my inlaws, this has been the overriding factor in their social lives. When Rachel first started college, they told her to find the Jewish groups, to which she replied that she doesn’t use religion as a basis for her friendships, that she likes diversity and finding friend who, first and foremost, share her values and interests. If she chooses one thing to define herself primarily, should it be her deafness or her Jewishness? Maybe instead, all the pieces go into making her the person she is.
As for why she learned French and not ASL – Well, first of all, her high school offered only two languages, Spanish and French. She chose French because I speak it and so could help her. I am very proud of her for achieving what she has with French. She has mastered the language, including speaking it. This is something that I’d be proud of her for doing regardless of whether she had been born deaf or not, but especially because she did have to work harder to achieve it than her normal hearing peers. Why does the fact that she chose to learn French have any bearing on her not opting to learn ASL? In high school, she became very involved with the French Club and served as its president for two years. This group of friends who shared a love for learning the French language and learning about the French culture formed a big part of her social life in high school. Again, I fail to see what is wrong with this.
I am very sorry for what you went through. It is not the norm, but I certainly don’t doubt what you are saying. I hope for you that there is a medical professional out there who will one day be able to help you. I also understand fully your choice to be immersed in the deaf culture, but why can’t you acknowledge that just because it was right for you doesn’t make it right for all who are born deaf? If Rachel is happy and fulfilled in her life, then what is “disgusting?”
January 22nd, 2008 at 1:49 pm
Erick
Were you orally educated or have you only been educated using ASL?
February 4th, 2008 at 12:59 am
Erick grew up orally. From what I understand, his oracy skills are excellent, even after he learned ASL.