2013-02-10

The Cyborg and its Children

This post is a followup to Hello hullo hallo hella hulla, the post detailing the reasons behind why I got my bilateral implants. As a bit of a disclaimer: Please understand that my results are purely anecdotal. Cochlear Implants have generally had a success rate of 2 out of every 3, where success is "being useful enough to the wearer in the long term". Success rate is considerably lowered the longer one goes without hearing, naturally. I am, in addition, one of the far outliers of the bell curve of success.

A bit of an aside - shortly after I published that post, my right implant failed. At the same time that was ascertained, there was a recall from the manufacturer on that particular chipset for a higher than acceptable rate of failure. However, the re-implantation process was painless (Oxycodone for the win!), lost wages during my recovery weeks were reimbursed by the manufacturer (Cochlear), and it wasn't long again before I was once again wearing two. The re-implantation surgery was on Halloween 2011.


The Cyborg

It is now a bit over a year and a half since I first had my implantation, a year and 3 months since my re-implantation. As for the results? Far beyond what I had expected.

In mid-November, when both implants were in working order, I called my sister on the phone. For the past 30 years with my hearing aids the phone was always a Charlie Brown experience for me: "Wah wah wah wah wah, wahwahwah wah wahwah wah". But with my implants, I was able to carry on a conversation almost flawlessly with my sister. It was incredible. I was similarly able to call and talk to both my father and my girlfriend (now wife) on the phone.

Is my hearing "fixed"? No - not in any way. It requires preparation to be able to talk to my sister on the phone. I have to wire both my processors directly to my phone. My sister has to place herself in absolute silence (she locked herself in her car), and enunciate clearly. While I still can't understand most people, and only clearly understand those I've known for a long time, this is worlds beyond what I was able to do with my hearing aids.

It is also incredibly draining. Hearing people understand speech as a matter of course. They don't need to focus or concentrate, they just absorb speech, surrounding conversation, etc. For me, it is draining. Incredibly so - It takes a heck of a lot out of me to understand anything going on. Probably the best analogy is for a hearing person listening to and learning speech that has numerous phonemes not usually in one's vocabulary.

But other than speech - the sounds of the world in general are a lot sharper and more noticeable. The sounds I can now hear - and more amazingly, distinguish - are even now a continuing new experience. My wife and I went camping recently, and I stood in the middle of a forest that would normally have been silent to me - I could distinguish the chattering of the creek from the wind rustling the leaves. I could hear cars and motorcycles zooming by on a distant, unseen highway.

So, suffice it to say, I effectively became a convert, supporting Cochlear Implants. Largely for the reasons listed in my Hello hullo hallo hella hulla, reinforced by my particular success.


The Children

However, a number of individuals have asked me since then where it makes me weigh in on the "Should deaf children be implanted (before they can consent)?" debate.

Understand one thing: I hold no truck with those who argue "It fixes deaf people" or its counter, "Deaf people are not disabled." Both are utterly false.

"It fixes deaf people" - The CI is not a panacea. It's not "Presto! You're hearing, now!". The CI is, instead, "With luck, you can hear better than you could otherwise - and would probably be more useful than hearing aids, depending on your causes." There is, at present, no cure for deafness.

"Deaf people are not disabled." - Understanding this argument requires understanding two parts: the capital-D 'Deaf culture' and self identity. For many people, deaf and otherwise, self identity is very strongly tied to independence. It is harder to imagine oneself as independent if they first believe that they are disabled. This has given rise to a culture of deaf people who believe that deafness is not - indeed, cannot be - a disability. To this, I say: The ability to hear is not required to live independently. Similarly, there are other disabilities that are not handicaps to independence - You can live a good life independently with one or two limbs missing, etc.

With those two arguments taken in one hand, the context of 'hearing' is entirely defined as a tool. For deaf people, that's all that hearing can ever really be. (I am not talking here of those that have only mild hearing loss, but those who are medically deaf.)

Now on to the argument:

There is one thing that is extremely critical to children, each and every one of them. Language. Without language, any person would be little more able to express themselves than a feral child. For a deaf child of hearing parents, this would be an extremely difficult task.

There is one parable that is quite applicable here: A deaf child will never see or hear a word of speech that is not directed at them. Even with a CI, they cannot hear well enough to pick up language through absorption like a hearing baby.

If your child is deaf, and you give them a CI without choosing to use sign, you will then need to ensure, constantly, that it is in working order, and that you, your family, and your community constantly talk directly to your child and you monitor their progress in speech and language.

Choosing oralism without CI is even more difficult than with a CI - Hearing is most definitely an extremely useful tool with lipreading.

If you instead choose to learn and teach them sign language, you will still drastically need to alter your life. You will need to sign everything you say, not just when you want to directly talk to them.

My own preference - Total Communication - is a mix of both, probably even more work than the two combined: Using a new language (sign language) in addition to teaching a deaf child to lipread and speak - It's not going to be easy, but it's worth it.

Simply put - No matter which choice a parent chooses, it's going to be lot of hard work. The choice of whether to implant their child is going to vary wildly depending on which choice of life the parent themselves make.

And that is not a choice for uninvolved people - whether Deaf Culture advocates or Cochlear Implant fanatics - to do more than offer suggestions and anecdotes on.

1 comment:

  1. bravo! Very well stated. I, too, believe the best option for getting language into a deaf child is via Total Communication.

    ReplyDelete