Wednesday, October 13, 2010

From Helen Keller to Jordan

On my train ride to teaching the parental support part of pediatric course number 8, a grandma sat across from me. She had smiling eyes.

She kept staring at me as I was going over my powerpoints, so we began conversing. She asked me what I did. Hmmm just happened to have the newspaper article in my purse; I whipped it out, smiled and handed it to her proudly. She nodded as she read the article and said, "Ohhh, you have a deaf son." I said yes. She looked me straight in the eyes and said, "Oh my, I just saw that amazing film on tv a week ago, you know, the one, what's it called?"

I had no idea.

She snapped her fingers and said, "Anne the Miracle Worker! So, your son signs, it was such a beautiful film."

Helen Keller.

I loved reading about Helen Keller as a 10 year old child. Her story fascinated and touched me.

I said, "No, my son doesn't sign."

She replied, "Oh, I see."

I turned my computer towards her and pressed play on the video of Jordan thanking the pediatricians. Her eyes filled with tears.

I advocate to educate. No better place than the trains of Italy.


Dianrez said...

It's great that you can spread the good word about cochlear implants. It works for many kids.

However, and I hesitate to mention it because of your advocacy being a passion, it gives the public the misleading impression that the CI is a cure or that it is the answer for all deaf children.

There are substantial numbers of deaf children and adults who do not benefit from cochlear implants, even if they had access to them.

The idea of deafness being fixable with the newest technology is not going to help us when we meet this attitude in employers, in schools, in any place that looks askance at us before providing services.

Promoting a single idea can have unintended consequences for other people.

Balancing it with promotion of human rights, no matter the hearing capability, is the best thing you can do for all of us.

Cloggy said...

I agree.... it's not for everyone...
But let's make sure that for the ones that it is a solution.... that it is available & affordable with the best support possible..

Trying CI is done best as early as possible... If there's obviously no benefit (for whatever reason) there are other options available...

Another thing.....
Would love to see some statistics on how many do/don't benefit, and especially.. why?
It's easy to say "not all benefit" ... just as easy as "it great for deaf children" but where are the numbers.....

kim said...

There is the same pressure for late-deafened people to get a cochlear implant. Recently while talking to a supervisor at work about some of the work accommodations I needed, she asked, "And when will you be getting a cochlear implant?" Without wanting to go into a long detailed answer, I told her that because of the type or hearing loss I have, that I couldn't use a regular implant at this point, but that there is an experimental one that I may get after it's approved by the FDA. All true.

I didn't explain that this process could take years and that even if I got an implant it would take awhile to train my ears to learn how to hear with the CI and then, after all that, I STILL might not be able to hear on a phone. There are no guarantees. They really don't know what they're going to find until they get into your cochlea and I know at least five late-deafened people who had trouble with electric shock from the device, and not being able to activate enough electrodes.

Truly, I think the CI is incredibly great technology, but it bothers me when people think everyone will benefit from a cochlear implant-- and then pressure you to get one without knowing your back ground-- which happens at HLAA and ALDA meetings all the time.

Not that Jodi pressures people, this is just the flip side of the coin.

Unknown said...

That's why there's a space for everyone can share. That wasn't a ci advocacy moment, it was just an information - sharing moment. *Smile*
And I don't hunt people down to drag them to ci surgery, I simply answer their questions and always tell them to consult a to you all...and thanks for always coming back to share your thoughts. Greatly appreciated. xoxo
Kim- I totally understand. And I can assure you that those questions do not arise yet here in Italy. Much better that you were able to make an informed decision for yourself, rather than not knowing about all of the available options. The right information and access to it is extremely important.

MB said...

Until I actually sat down this summer and read all of Helen Keller's writings, I had no idea that she was friends with Alexander G. Bell and tried desperately to be oral herself. Also, she got through a lot of college thanks to lip reading (was not totally blind then, another misconception.) I have not a doubt in my mind that were she born today, she would have been first in line for a CI. She was amazing and did amazing things, but I think people assume things about her that are not necessarily true. Read her own words if you really want to know about her.

And, cue discord...

Dianrez said...

Um, Helen Keller used the Tadoma Method to lipread; she laid her hand on a person's throat with a thumb over the lips and "read" lips this way.

I don't have any information that she could see anything at all; but she was not able to lipread visually.