Can you be a little bit Deaf?

Admittedly, my daughter is only 11 years old, living in a hearing family, using bilateral cochlear implants and has verbal speech as her primary language. However, she is fluent in SEE sign, and is quickly improving in ASL. She tends to hang out with the D/HH kids at lunchtime.

Is she deaf, or Deaf? We got into a conversation the other day about how she feels about her deafness. If she could wave a magic wand and "fix" her hearing so that she no longer needed implants, would she do that? Or would she wave that wand and remove her implants so she could neither talk nor hear at all? We talked about both options, and how if she had never lost her hearing, she would not have sign language. We would have never learned it nor taught it to her. If she had no implants, she would not have any hearing at all, so she would not have music and she would not be able to communicate easily with most of our extended family, especially the cousins she is so close to.

Turns out she is perfectly happy where she is. She would not wave that wand in either direction. She likes the hearing she gets with her implants, and she likes the ability to take them off and go silent. She loves to sign, and loves to use that ability with other deaf kids. Many people would say she is sitting on the fence between the deaf and the Deaf worlds. She sees herself as being able to fully participate in both. Does that make her a little bit Deaf? I don't know. I am just happy that so far, she feels good about herself and sees herself in a positive light.

Deafhood foundation

I just finished watching the welcome video for the Deafhood foundation. Before I started watching the video, I was wondering- would they mention cochlear implants? I was actually hoping that perhaps the message would be positive and inclusive. Wishful thinking.. Butch mentioned cochlear implants 33 seconds into the welcome message as an example of economic exploitation of deaf people. This did not make it into the English text version though.

The Deafhood foundation is run by well respected Deaf people in the Deaf community, and many Deaf people are impressed by the video and its powerful message. But all I see is a huge obstacle to the acceptance of all of these Deaf children with cochlear implants. Would this lead to increased intolerance for Deaf children who happen to have cochlear implants?

The Development of Bimodal Bilingualism

(click on images to enlarge)

Ossified Cochleas are a Different Animal

When my daughter decided she wanted an implant for her other ear, we were told that since that cochlea was fully ossified (filled with bone), there was no way to predict how well it would work, or how long it would take to get maximum benefit. With most implant proceedures, two years is the general time frame between implantation and maximum benefit. Since she got her first implant before that cochlea ossified, it works very well. Ossified cochleas are a different beast entirely.

What she was able to do after two months with her original implant, took a year with her second implant. She has a complete insertion of the electrode array in her left ear, but only has 11 electrodes in her ossified right cochlea. Most of them tend to stimulate her facial nerve rather than her auditory nerve. Out of 11 electrodes, only 5 electrodes are active. You would think that this has been a complete waste of time and money. You would be completely wrong.

Having two working ears, even though one doesn't work well, has made a big improvement in her ability to hear in noise. And really, most of life exists in noise. Even before she could distinguish sound in her right ear, she was showing marked improvement in her overall hearing. At her 6 month check last summer, her overall hearing was 7% better with both implants than it was with her original implant alone. And at her check yesterday, she did really well on the closed set words even at 15 words.

We never really expected her right ear to work very well by itself, and were mostly hoping for what we have already gotten, better hearing in noise. But her brain is beginning to make sense of sound in that ear by itself, and it should continue to improve. Absolute bonus.

If you lost your hearing from meningitis, and you have ossified cochleas, you will want to think very carefully before getting implants. Progress will be extremely slow, and you will have to work VERY VERY HARD to get any use out of them. I would only recommend implants if you have a very strong dedication to wanting to hear, and you are willing to persevere. The good news is that it is possible. Just not easy.