Friday, March 21, 2008

Sweet nothing in my ear & cochlear implant

Check this link out and look at the comments made on the bottom. It goes to show how writers knowing next to nothing about cochlear implants.

http://www.broadwayworld.com/viewcolumn.cfm?colid=23451

Wtih the discussion about cochlear implants going on right now, I'll be the one to tell you that I don't care whether someone chooses to get an implant or not.

What I do care about is this:

I am against parents implanting their children prior to being 16 years old. As for language development, teach them ASL for crissakes. I recall meeting people in high school and seeing the huge scars over their ears.. Where was the implant? Nowhere to be found. "I hate it and I have never worn it!!" was the common answer.

I advocate cochlear implants for adults--when they make the choice for themselves to get it. In the past few years, more and more of my friends have been getting the implant, including a 66 year old PROFOUNDLY deaf, lifelong ASL user!! He stated "It's a toy for me. I'm retired and I thought 'Why not?' I don't care what other people think. I've still got my ASL and it won't change who I am!" Kudos! It was strange having him tell me that he could actually hear me scratching my arm. He could hear me breathing. This coming from a guy who has been completely deaf for 66 years?? Of course, he couldn't speak diddly. But his ASL is beautiful!

And just a couple weeks ago, another friend got implanted. I could tell the difference in her voice, she can speak clearer now.

Sometimes, deaf, ASL users like us just want to get an idea of what the world sounds like. Is that a crime? No. I think it's beautiful, really. I grew up with binaural hearing loss and was fitted with hearing aids at the age of four. After years of speech therapy, I could speak just like any other hearing person. However, living in Hawaii was different. The language spoken there is Pidgin Creole, and sounds something like this:

"Eh brah, dem waves are poundin' at da beach today! You like go?"

"Ho, dis poki is so ono!!"

"You like da kine?"

So, having to listen to this Pidgin while learning to read English in school was challenging. Eventually, I picked up Pidgin and became a native speaker of it. Sometimes I'll slip back into my Hawaiian mode and start rattling off in Pidgin and oddah peepo go look at me like "Eh?" "Where are you from? I hear that you have a different accent."

"oh yah I grew up in Hawaii, cuz and we go speak da kine Pidgin ovah deah you know... and den I come ovah heah and nobody knows how to speak Pidgin'!"

Anyways, I start learning ASL at 16 at YLC in Oregon.. then went to MSSD and Gallaudet afterwards and I really picked up on the ASL. It took a good while to let go of my stronghold on English and understand how ASL worked.

And because I can hear and speak so well, I have found that a lot of friends were jealous of my ability to hear. Not jealous like "I wish I could hear too." but jealous like "I wish he didn't hear, so he could be like all the rest of us..." Maybe jealous isn't the right word....So I stopped offering to interpret for friends at McDonalds after being told not to.. I decided to let them take care of it. Early on, I didn't know. But after a few years, I learned that anyone can do anything and if it means writing a whole conversation on a piece of paper--so be it. It's nothing to be ashamed about.

I still can hear and speak, and have thought about getting an implant sometimes.. but I've been on the fence about it for a long time. I just haven't taken the plunge. Maybe I'm not ready. Maybe I don't want to. I love ASL in all it's beauty and glory and I don't need an implant for it. But I want to hear music better. I want to be able to talk with hearing people without going "Huh?? What'd you say?"

If I got an implant, will that cause me to be seen as different? I have never, ever treated my friends any differently after they got an implant. What for? If Raychelle true biz got an implant, good for her! I won't treat her any different. If Carl (Kalalau) got an implant, he ain't gotta get anything different from me. It's a personal choice. Just like getting a tattoo. I got a bunch of 'em. Am I treated differently cause of them? Nope.

So then, I am beginning to see less and less a basis for the argument against cochlear implants today, other than I rather not see children be implanted.

I understand, though that parents don't know what to expect, and they think that being able to hear and speak leads to success in one's life. But they don't know that it leads to ridicule, stigmatization and marginalization during childhood. That's the crappy part that I hate so much. Even with hearing aids, that's what I went through. Had I never discovered ASL and Gallaudet, where would I be?

Lost, I bet, trying to hear my way through the world and still saying "What? Huh?"

I'm glad I found ASL. Along with ASL came with many good friends with whom I cherish relations with. It had nothing to do with whether I could speak or hear.. It has to do with how well I understood ASL. Only when I learned to embrace ASL and Deaf Culture, that's when my friends embraced me.

Would I have these friends if not for ASL? Probably not. Would I be married today? Probably not. The worst place to be is in the middle--being hard of hearing and not being able to completely understand verbal communications and not being able to sign in ASL. Its like Purgatory.

ASL is in my heart forever. If I got an implant tomorrow, ASL ain't goin' anywhere.

BF

9 comments:

Anna said...

Hey, I loved your post. I suspect that you may be "too hearing" to have a cochlear implant, and that's OK. I am hard of hearing, too, and I'm so glad that I found ASL. You can come over to my blog and read a bit more about who I am and where I am coming from. I am not getting a cochlear implant for a myriad of reasons. Should I go more deaf, however, it might be a possibility, though I don't think it'll ever be in my cards because of a pre-existing condition that prevents me from having a magnet in my head. So, no cochlear implant. but of course, it's a personal choice.

Unknown said...

Hey, i like this post! Thanks for sharing this with me.

Can you email me at info@hamiltonphotographer.com? I'm expanding my business in hawaii and would like to ask you a few questions about the area. For example, i have family who moved to Kona-Kailua area in West Hawaii 5 years ago. I want to catch up with them there as well as get to know people in our community at the Big Island.

Thanks for any information that you can share :).

Kate said...

"The worst place to be is in the middle--being hard of hearing and not being able to completely understand verbal communications and not being able to sign in ASL. Its like Purgatory."

Definitely!

Deb Ann and Hannah said...

Great post!

Kona said...

Your post shows you know very little about the Cochlear Implants of today. First, the "huge scars" are now only 1-2" long and hidden behind the ear. When my daughter was implanted, no shaving of her hair was required. Secondly waiting until a congenitally deafened person is 16 to get an implant is almost sure to fail. Human Development studies show that there are critical learning periods, in other words, if someone does not acquire a sense like hearing or vision by a young age, chances of success are quite low. (no wonder your high school friends did not have success with their implants) The last point I will mention is that some centers are now using implants that do not destroy an individuals residual hearing.
I will not say that every deaf child should be implanted, but it is up to the parent to make an INTELLIGENT AND INFORMED decision after thoroughly researching all options, CI, ASL, SEE, etc.
Thanks for allowing me to post.

Raining in the Northwest said...

Thank you Kona,

Can I ask you what you have in mind when you say "success"?

"Human Development studies show that there are critical learning periods, in other words, if someone does not acquire a sense like hearing or vision by a young age, chances of success are quite low." --this statement is a bit ambiguous as it does not delineate what kind of success and what it is measured with.

Can you please expand on this and be more specific about what kind of success you're talking about? That way I can craft an accurate response instead of one that's rife with assumptions.

Thanks.

Kona said...

I would say success with an Implant is meeting the goals that are set prior to surgery by the patient/parent, surgeon, audiologist, educators etc. These goals can vary greatly from case to case. It may be sound or word recognition, speech acquisition, environmental sound recognition or even localization, music appreciation etc. Basically success could be defined in many different ways for many different people. The important thing I believe is to have a clear understanding of the risks/benefits and have realistic goals prior to surgery. Hope I cleared things a little, thanks.

Kona said...

Also see Raychelle's blog on DeafRead
titled "the earlier, the better" She explains it better than I ever could.

Kim said...

'The worst place to be is in the middle--being hard of hearing and not being able to completely understand verbal communications and not being able to sign in ASL. Its like Purgatory.'

AH-- you've described what it's like to become deaf late life so well. I struggle with the CI decision. I have a lot of residual low-tone hearing that I benefit from, so I don't qualify for the regular CI, but I DO qualify for an experimental hybrid that is far less invasive.

Trouble is, there's still a 15% risk of losing my low tones. I am one of those who falls between a rock and hard place. Many CI friends seem to hear speech better than me with their CI's. I don't get a lot of help with my aids. On the other hand, I'm still enjoying music with my aids because of my good low tones. I've been going deaf so long, it isn't guaranteed a CI would help me hear speech as well as some who lost their hearing suddenly. It's always a gamble, which is why they won't implant a person unless they hear practically nothing. If you have residual hearing you can make use of, it's often best to use it.

Still, when your hearing falls below a certain point, then you run the risk of damaging surrounding nerve cells that might be in good shape because of the overly loud amplification being piped into your ears all day long.

Either way you damage your cochleas permanently. I hate when people act as if the CI is a magic solution. I know for a fact it's not, though many people can hear well with it. Many others I know cannot. Then there are all the malfunctions that happen and there's also the future to consider.

In a few years, the CI will be considered "old" technology. It isn't perfect or a cure-all to deafness.