This is my first blog, and I felt the need to write to express MY feelings on CI for parents who plan or have CI on their baby.
There have been a lot of issues on cochlear implants (CI), last week and this week, it's just getting very intense.
It is ok to agree to disagree, you may support CI 100%, you may not support CI 100%, we may share our opinions, our concerns with an open-minded atmosphere but why must we round up in a war?
I do NOT and NEVER will support the concept of parents who get to decide to CI their baby.
Why do parents get to decide how their child lives in this world?
Why can't parents WAIT until their baby/child grow older and they decide on their own?
They (the parents) are not the ones having the surgery, they do NOT know what it is like to have this implanted into their child's head.
When I read Mishka Zena's blog about Cis: Uncomfortable Pressure Never Goes Away. Why did he have to go thru all this just to "hear" some? CI does NOT hear everything. They get "headaches", "dizziness", "emotions changes", etc.
I really hope that there will be a LAW in the near future, that no babies will be allowed to get CI's until they are 18 years old, old enough to decide and really know what to expect during & right after surgery.
(Aidan's Vlog: Misleading Information and Amy's Experience of CI)
Now, back to the parents who CI their babies, do they REALLY know how their child is truly feeling when being implanted? Just because s/he smiles not mean s/he is not uncomfortable, I think it is more on the parents' OWN perspectives/feelings that they are happy, but is their baby really happy? They are not the ones with the metal in their head, or going thru all this. Thinking their child is "accepting" it? THINK BEFORE you IMPLANT your baby's precious head! There is another saying "Just DON'T do it!!!!"
Jack's Eye (The Ugly Truth of CI) hit it right on the nail too.
Look, ASL is free, ASL is painless (no pain/no side affects), ASL is JUST SO BEAUTIFUL, and ASL is a language! YES A LANGUAGE!!! A CULTURE on its own, and anyone can use ASL FOREVER!!!
(Tears here).
PS: For the ADULTS who already have decided or will have plan have CI…my question is: WHY? I thought by the time you become an adult, you are accepting yourself being Deaf. Sure, when some of us were kids/teenagers we may have not "accepted" or fall in love within ourselves as being Deaf, but once on the "Deafhood" Journey. YOU FALL in LOVE being Deaf. Deaf is BEAUTIFUL!
"Amy O' Berry's Experience with CI" Vlog by Aidan
"CI Uncomfortable Pressure Never Goes Away Blog by MishkaZena
"The Ugly Truth Of CI" Vlog by Jack Barr
18 comments:
Parents do not want to learn a new language, ASL.
It's too difficult to learn.
Easier to have deaf child learn to speak and adapt to hearing world,..as they think.
So make life easier for hearing parents and let deaf baby learn new life, oral way, into the hearing world.
It did work for a few so worth it to gamble and see it their deaf child can do it.
And if not, at least parent did try and accept failure...and blame on deafness.
What a pity!
This is very common in this society.
I'm an adult with a CI and I am going to answer your last question. I have been deaf since I was four years old and grew up mainstreamed. When hearing aids no longer provided me with what I needed to hear, my next option was a CI. It wasn't until I lost my hearing that I accepted the fact that I was deaf. Being deaf has its perks at times but it doesn't help when my entire life and basic necessities are based on a foundation of sound. I needed to continue that as it is the only life I know.
I am glad to see that there is a surge of completely neutral cochlear implant experience. It give the whole picture but in retrospective, it is NOT the only picture. There is several CI users that are perfectly happy with it, me being one.
Had tears after read The Ugly Truth of CI vlog...
That is so horrible.. I can't understand the CI surgery can causes the mental and physical illness...who would do a terrible thing like that!
Absolutely.. we, deaf people need to do something. It is not right for the doctors to decide to fix the baby to satisfy hearing parents as they are expecting highly that thier baby to become 100 percent hearing which is false. Hearing parents think it will be fix and done in perfect as normal hearing children do and later on things can be far worsen like that guy on vlog.
I know few CI user are doing well but not everyone. Each indivudals are different.
Did we have the status how outcomes after using the CI .. are all they sucess or what? We dont hear any negatives results .. all we hear postive.. we all know the doctors and hearing therapies are hiding negatives results. It is not fair for the hearing parents do not know the other side . They do have a right to know in negative and postive outcomes.
We should educate more at medical schools that not all babies do not need to have CI.
WE ALL need to fight and change for our future deaf children.
SB
My daughter is deaf. She is 8 months old. I CAN'T image to implant my baby's head. ASL is the way of communication. Yeah..hot discuss on CI. Wow. We tried to open and give them what we had through ASL. Well.. MONEY talk! ASL talk always there foerver with at no cost.
I read and watched on few of b/vlogger several of these lately and I really irriate when I watched or read their stories about CI, It is not acceptable with doctor for not being honesty with parents of deaf child.
One things, We need to stopping doctor and Hosptial provided and CI is not coverage of insurance would not pay.. but some people say CI will coverage by your insurance would cover as long Doctor is greedy! Plus, 50 to70 thousand dollars it is alot of money so they are greedy.
Plus, there is misinformation about CI. We need to stop congressman to getting more information accurate instead of doctor did not tell a truth!
Yes i agree with ya... I don't know why some parents CI their babies, it has to be very painful for the baby. also it kinda like playing "god" to those babies. maybe they are deaf for a reason, it's better for their well being. I am glad i am deaf, also i know if i could hear without my hearing aid, i would never be able to go to sleep just cuz i can hear. so i am very glad i am deaf. so those parents who want to do CI just needs to be educated to choose other options and meet other deaf people and learn to sign for their child...
Good Post!! True about WHY implant cochlear on babies? I'll never understand except for one...greed on doctors' part. About parents who allowed this to happen to their babies (not the adults as it's their choice which I'm not against, but the babies...big sighs)...why parents allow doctors to convince them to have their babies be implanted with cochlear, it's mind boggling! What babies had to endure, I can't imagine...
I was very touched and had tears when I watched Jack's Eye's vlog about a former CI's experience. And I fully support Mishka Zena's blog and can sympathize with what she's feeling...as much as I do with yours because I feel the same way!!
I believe that many parents who allowed it was just thinking "it's for the best of their child's interest", but is it really?? I believe that many parents feels guilty and blames themselves that their child/children are deaf, which isn't their fault, at all! (Or maybe they couldn't accept to have a "deaf" child in their family??) God loves us all, just as we are! Why try to change when we are doing just fine! It is NOT hopeless case! Deaf babies will learn how to adapt with life, just help guide them with helping hands.
Parents...please think about it...do not put your babies through so much pains and struggles with the implant...just teach them to be productive and happy people that accepts themselves. B.A.D.'s right, wait until they're of age and can decide for themselves if they want it done or not...and give them support in whatever they decide.
For hearing families who have deaf children, it is important to learn their visual language ASL, make sure they have deaf peers and role monels in their daily lives, most importantly accept and respect them as a Deaf individual.
Speaking from experience, Bi-Bi keeps families together forever.
B.A.D.,
You are so right--- ASL is free, painless, and beautiful. ASL has all the positive benefits, zero negative effects AT ALL.
As for parents themselves; when I visited Sweden, I could see that parents were encouraged to use Swedish Sign Language with their Deaf babies-- classes were provided free of charge, etc... families there thrive so much.
We need to set up a system here where parents have direct access to the Deaf community and our beautiful language, ASL.
Parents who CI their babies and children are CONTROLLERS!
"Why do parents get to decide how their child lives in this world?"
Because they are the parents! The parents are in charge of a newborn person, one who does not know anything about the world. They decide where to raise that child, what school to send that child to, what religion to teach that child, what that child will eat and drink, all because the child does not have the ability to make the decision for themselves because of age/inexperience/helplessness. Once the child is old enough to make that decision on their own, they step back. But until then, they make the decision in hopes that the child will learn. Deciding whether to implant their child is their right as a parent.
I do not agree with your statement that no children should be implanted until the age of 18. I have a CI myself, implanted at the age of 14 by my own choice, by I am not a pro-CI nazi. I believe parents need to use the method that works. CI does not work for everyone. I have seen it with my own eyes and people who insist otherwise are naive. But it does work for some, so it is not an evil device like you seem to think. It does not cause pain in everyone. Some people, yes. Every single CI user, no. If it works for a child and allows them to function in the world, to communicate, then it should be allowed.
I say I totally agree with you. I dont understand why those parents decide to give CI to their babies. Here's irony, I am sure parents dont want their babies to suffer, but those who give their babies CI and they do suffer. Here's other thing that insurance does cover CI, but not cover for plastic surgery. CI does a lot harms to the babies and why would they do that? In my opinion, it's all about money and society. they want to find any way to fit the society to survive. we dont need CI to fit the society to survive. we can do ASL to survive ourselves!
I know someone who has CI and cannot really play sports. Once it got hit on CI and the risk would be gone into coma and CI damage along with brains. It doesnt really broadening the opportunities in their life. It s sad, isnt it? It s just a sport, it does help a lot in life with all commitments into work, life or whatever it is. sports do apply all things in life. CI itself and success doesnt really help. we can just use asl, it is priceless! CI cost too much and it hurts life.
Yes, my sister and mom worked as inerpters in public schol. They both said the same things, their "kids" complained of headaches, complained of metal shock on slides, one boy even put his head down on the desk, said that his head hurt so bad.
Other kid complained to my sister that he was in pain, then my sister had to inteprter for this boy's mother *(yes she was also deaf and she thought her kids hould be ci!!!!) Sister hinted to this boy that he should tell doctor how he felt about headaches, this boy denied strongly because he did not want to upset his mother.
So, kids want to put on thier fake smiles to their mothers and tell them oh yes everything is fine because they know that their mothers want them to hear!!!
Hi Abbie:
"Being deaf has its perks at times but it doesn't help when my entire life and basic necessities are based on a foundation of sound."
Being Black has its perks at times but it doesn't help when my entire life and basic necessities are based on a foundation of white society.
What you wrote that reminded me of Micheal Jackson who had many plastic surgeries to get himself white so he can get all basic necessities. Right?
Many deaf people are successful in hearing community and do not need cochlear implant. Why don't we encourage hearing people to get deaf implants? Of course, it is because deaf people know how to respect different group with different language and are proud that they are a part of diversity. Unfortunately, the system is trying so hard to push deaf people out of diversity and to place them in undesire group.
Look at Marlee Martin, she doesnt have CI and she is very famous. What happened to Heather Whitestone? She has been quiet lately. I thought having CI would help her to become more famous than Marlee Martin.
I hope one day you will take Deaf culture/history and ASL classes that will help you to understand better about the history of oppression.
Reggie
"Because they are the parents!" Bad answer!
Did you know that some parents do not know what they are doing? In America, they have family courts, parenthood organizations, and family services to protect children from their own parents.
Being deaf is not life threatening. The parents would go too far by allowing the doctors to cut up their precious babies' heads and gambling on their precious baby’s live. What kind of parents is that? Parents were supposed to protect their babies from harm.
I am appalled that the parents would give up their rights and hand their babies to the doctors that they only met three times. They would give an ok to doctors for cutting up their babies' heads. That is so pathetic.
There was a case where the doctor told a parent that this baby is not eligible for CI. The parent was so angry and stormed out of the office. The parent kept on finding doctor who would do the surgery. Finally the doctor with no moral value accepted and did do the surgery. Now this baby had a brain damage. It is because this doctor is not specialized in that area. He was a podiatrist, a foot doctor.
Do you think it is good reason: "Because they are the parents?"
Good blog, BAD
Bella
I totally agree with you! I would never, ever have my baby/child get a surgery (CI). If she/he were deaf, I would defintely accept for who she/he is. I can't imagine my baby/child having a metal device in her/his head. My gosh!
You know, I am deaf and I have a deaf family. Believe me, I am proud to be deaf. And yes, to have a deaf family. I remember when I was young I had people (including teachers) asking me how I feel to be deaf. Well, I have to admit the truth..I can hear and speak but I still label myself as "Deaf". They also asked me how I feel to have a deaf family. They thought it was hard for me to have a deaf family because I was the only one in the family that can hear and speak.
Now about Deaf Pixie's comment, I personally don't know who is responsible to pay for CI but my sister said she heard that babies/children under 3 years old get it for free. You know, I don't think they should get CI until they are older enough to make their own decision. More likely, when they are 18 years old.
By the way, you did a good job! (winks)
Gina,
In the facts, Health Insurance always covered for CI. but not hearing aids.
It is not make sense! Insurance should pay hearing aids it is much cheaper than CI.
Deaf Pixie
I'm going to say up front. I love your blog, and I won't stop reading it just because you bring up your own opinions about controversial issues. It's really awesome to "see" that.
I am an adult, and I have CI. Yes, I am proud to be Deaf, however I grew up with hearing aids, and have always gotten used to sounds all around me. To me, silence is not what I can really live with because I grew up with sounds. My deafness has gotten really bad, and that's when I decided to get the implant. Basically, the same story that Abbie went through. All I can say is, it was my choice, and I'm 29, and I did all the research on CI.
Babies on the other hand - I agree with you. I personally think it all has to do with educating the parents about Deaf culture, and resources available. Why can't they have their child on Hearing aids until they're old enough? Is the hearing tests at 2 months old baby really that reliable? Wait until the child is a couple years old.
Some doctors and parents would feel that implanting their child will speed up their language skills. That's BS. It all has to do with getting a good education from schools and parents.
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