Message for all hearing parents of CI candidate children
I think these are the interesting parts of your post to me. You are speaking with the perspective of someone that has "failed" with the CI and that failure then lead to feelings that you have a "machine" that was forced into your body against your will. That's natural to feel that way. We do all tend to feel negative about any process that hasn't worked for us. I know I do!
However it's impossible for parents of children to know in advance what the outcome of a potential CI and how their children are going to feel. There is someone like you with the thoughts that you have outlined above and then there are those who are really happy with themselves as deaf people with CIs and who do not feel limited. Most CI implantations on young children according to studies are at least reasonably successful and lead to good emotional wellbeing and confidence.
I think that all parents can do is to read stories like yours as well as the success stories so that they can prepare themselves for when and *if* their child does experience those feelings and use the help of therapy and counselling to help them come to terms. I underline "if" because not all of us feel like we have a "machine" in our heads - I don't even think about it to be honest. And I still feel that I am deaf too. Deafness is not an either/or thing for me. And I don't feel limited by my CI at all. I can throw myself into deaf culture if I want to and into the hearing world if I want to at different times.
We are all different and come to different feelings and conclusions. If I were to have a profoundly deaf baby one day that could not benefit at all from hearing aids I will make no assumptions. I will simply provide the tools and then let that child self determine with those tools when they are of age.
We are all different, like you say; some of us may hardly notice a CI as being foreign from our bodies, while others will even though the CI works well, such as it does for Animal_Lover.
I think the best way to answer your statement is with e-mail feedback my mother and I had recently:
My mom:
"When your dad wanted to implant you when you were a child, I didn't have a strong feeling of which way to go with that decision. What persuaded me to go along with it is the fact that we were told that your language was largely formed before 5 years of age and if you lost out on the auditory input at that crucial period, it was something that you could not recover. That your understanding of language would be affected. You were so young and had gone through such a devastating change in your life, it seemed that if we could help you in any way, that we should do our best. I prayed and prayed about it and never had a strong enough reason to have him stop the procedure. I couldn't see the future at the time and how it would turn out. It might have been the greatest help to you, but it wasn't. We - flat out - just wanted to give you anything back that might be possible."
My mom (who is hearing) had a nearly impossible decision to make. The doctors told her that without auditory input, it would be something I would not be able to recover (as in brain using sound to develop language abilities).
Understanding the nuances of how information can get distorted, I see this as an excuse doctors make up if no one knows the correct methods to help a deaf child in language development; which can possibly arrive at an inconclusive observation.
You have to observe there is a chance this could be true, and possibly why many deaf children have problems with language development. No one may know how to deal with this situation correctly... therefore as a result, you have many deaf children who have language difficulties, not to mention that researchers coming to half-truth conclusions could have been subject to prejudices. Their conclusions are still subject to bias of what is true or false. Yet look at my language development, which I think had nothing to do with CI but rather having good teachers at a pre-school that set up a new, unique kind of program for deaf pre-schoolers which was the first of its kind in the state of Oklahoma back in 1984.
My reply e-mail [addressing a question she asked me earlier. I'm answering her question directly, not accusing, so please don't misconstrue] said:
"Regarding the cochlear implant and deafness, I can see why it would be difficult to know how a deaf person would feel. The Internet wasn't in widespread use then. But were there ever any books at the library you could've read to understand about deaf people and deaf culture? Perhaps it would've covered some aspects of what deaf people think about cochlear implants, even though CIs were fairly new at the time. If I were you, I would have called around to find out if there were any deaf schools or deaf people I could talk to, so that deaf person could've referred me to other deaf people and I could've asked questions about living with deafness and how they feel about the new cochlear implant. Since it would be something the child would be stuck with permanently, I would want to make sure I got enough input from both hearing and deaf people before getting an invasive surgery procedure done. There are always two different sides to a story so do everything it takes to hear both sides before putting something into a child's skull that is not as nature intended.
It is not necessarily because I had a cochlear implant "failure" that I am against putting a CI into another human being's skull without that human's consent. Deafness is not a life-threatening condition; although it can severely affect language development so I see why that's a problem. But I believe in keeping the body pure - no piercings or tattoos, for example. I like to be clean and have no foreign objects underneath the skin. That's just part of my personality. That has to be respected in case the child grows up to have a personality like that; but things like this aren't readily observable by most people... I believe that any foreign object (except for life-threatening conditions) put into someone's body should be a choice made by that individual alone. But for language and mental development, I feel that not everything possible was checked into first (such as contacting deaf people somehow), knowing that a cochlear implant is something that can change a child's life forever. I guess someone who can think as clearly as I do about things like this is a rare occurrence, so I don't really blame you for this happening. It's just that I don't feel comfortable having something in me that isn't anatomically part of me, and was never really my own choice to begin with. Would you want a machine in your own body? What if the CI is found to be unsafe 50-80 years later, causing unknown side effects? It is risky to place too much faith in what one calls science, since research is prone to errors."
Is it worth imposing your will on a young deaf child if there is even the slightest possibility the child may turn out with a personality like mine? Yes, it can happen... Animal-Lover said the same thing... he feels the same way regarding his body being respected... and not being manipulated like an experimental guinea pig. We may see it differently than the ones who view it positively, but it's more a question of ethics - and the thought of "be happy with what you have, your parents did it out of love" still bears the problem of the ethics of putting a foreign object under a child's skin, that the child could potentially not want as part of its body later on.
It's not too much different than a rape victim having a baby (which certain groups of people may call a blessing) while it was someone else's will imposed on her irreversibly, and then expecting that person to be happy and look at it as a positive thing later on. Of course this is an extreme example because the parents did it out of "love" but still, if a deaf child can feel this way, then you cannot dismiss the possibility that it could inflict heavy emotional damage because someone took away from the child the opportunity to experience his/her body as nature intended. The child never had a choice in the matter. The CI debate boils down to ethics. But if there is the possibility, then you are better off not assuming the child won't see it that way.
This is a message for future generations of hearing parents who consider getting CI's for their children. I have forgiven my mom and moved on, but hearing parents need to be aware of how a deaf child can interpret a non-consensual CI surgery... so DON'T assume the child won't see it the way I do, as well as others successful CI users like Animal_Lover.
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Yes, that is how i feel..