Tuesday, May 12, 2009

You Need to Speak TO ME!

*Smile* I've received about five MAJOR emails in the past two days. All of them touched me, majorly. So sweet. Thank you...

I'm like a walking sensitivity hormone these days, so my experience at Pisa blew me away. I met a guy who I've been corresponding with via Italian forum and facebook- he is ADORABLE!!! It was like meeting Jordan fifteen years from now. This guy was tall, (he looked shorter in his facebook profile photo)extremely intelligent and nervous. His mom- emotional, terrified and intelligent.

I was there to provide support based on my experience. You see, after twenty-some years of wearing hearing aids, that no longer work for him, he has decided to opt for the cochlear implant surgery. Although he is Italian and Deaf since birth-educated using the oral approach and mainstreamed, he writes the most beautiful English I've ever seen and has been surfing Rachel and Abbie's blogs to gather information regarding cochlear implants.

*Bloggers' International Cochlear Implant Awareness Service In Effect*

To those of you who write to share, you will never truly know how your experiences touch and enrich the lives of others...

I don't know if I can adequately express how it feels to make direct eye contact with another mother who you know has worked her ass off for twenty-something years to raise such an incredible man, knowing her fear that her son is about to undergo surgery. Or if it's possible to find the words to explain her break-down when she watched Josh Swiller's video as he says, "Shh-it" and repeats word for word the sentences in the speech test...just because he can finally hear- imagining that her son might actually truly start hearing for the first time in his life. Knowing how difficult it is to have to wait to reach that moment with the fear of a surgery in the middle throws me all out of whack and I get all teary-eyed, too.

I was invited to sit in with their meeting with the ci surgeon. Something happened that made me want to stand up and SCREAM!

The surgeon sat across from the table and spoke to the mom, not the twenty-five year old Deaf patient. Every now and then, he would speak to the patient, but the majority of the time, he spoke to the mom. This really bothered me. Apparently,it didn't bother the man, but it REALLY bothered me.

This man knows way more about the surgery and all of the details than his mom, he is highly intelligent with a great sense of humor and he has had all of his questions answered by international bloggers.


I will say this: the cochlear implant surgery and its subsequent activation and therapy will provide this man with something so powerful- it will enable him to find the confidence to say, "You need to speak to me...and not my mother."

Photo: www.businesspundit.com


Anonymous said...


Dianrez said...

That doctor typifies the industry that "serves the hearing impaired"...people are not noteworthy unless they are hearing.

American Deaf have the word "audism" to describe it, but it's actually a more insidious human failing--superiority.

The CI alone will not give the young man the guts to say "Talk directly to me." Experience will.

sara said...

It is always easier to let people talk where they will talk. If he had done all his research it's likely he could understand the surgeon fairly well and was more concerned about letting him talk to and possibly comfort his mother.

It's when Questions that should be directed to the deaf person are directed and answered by the mother that it's more of an issue.

Unknown said...

Sara, good point.
Dianrez, That's too much of a blanket statement and I'm gonna not have to let that pass...Anyway, that's what I was there for...to dialogue and support. It was the surgeon's idea to put me there...
Anon- grazie.

Anonymous said...

reminds me of all the times when, while growing up, hearing people would talk to me and I didn't notice. Family members standing by me would tell them quickly, without me knowing it, "she's deaf -- look at her so she can read your lips." I'd then look at the speaker, who would be looking back at me with horrified interest, and not say anything at all to me after that. And then they'd have a conversation with my family members ABOUT me, but not WITH me. I can't tell you how much that makes my blood boil! I agree with Dianrez's last statement, paraphrased: a CI will not make him assertive, aga and experience will. But at least the CI will give him more sound awareness so he will know when someone is speaking, and in the best of all possible outcomes, he'll be able to say, "hey - I'm standing right here."

Anonymous said...

Or if it's possible to find the words to explain her break-down when she watched Josh Swiller's video as he says, "Shh-it" and repeats word for word the sentences in the speech test...just because he can finally hear- imagining that her son might actually truly start hearing for the first time in his life.I don't think you meant it this way. But I hope she's proud of her son and happy for him WHETHER OR NOT he manages to make any sound at all...!

Is he the same person before and after saying anything out loud? Yes, he is. That is the key point to keep in mind, I think.

Unknown said...

Anon 2,
I know that feeling, I've seen it happen to Jordan. He wasn't old enough to realize it was happening and he still isn't. But now, he has reached the point where when he misses information, he insists on it being repeated- that is the beginning of him asserting himself. And I like that.

Dear Anon 3,
Actually, I did mean it that way. And that takes nothing away from the fact that she is proud of her son. It just means that after raising this incredible guy using the oral approach and knowing how difficult it is for him to deal with having lost his residual hearing and the ability to receive any type of gain from his aids, she was emotional seeing that the possibility of him hearing exists.
There's nothing wrong or insulting about that...it just is and it was obvious on her face.
She is so proud of her son and who he is as a person and she is terrified...
Thank you for your comment...

Anonymous said...

Hi Jodi! Since it was the doctor who invited you to attend...I hope you took the opportunity to talk with the doctor afterwards (if not, you can contact him and have a nice frank talk over cup of capuccino) and educate him about talking directly to a deaf person who is an adult. The doctor needs to be educated and who else to do this....you!! :)


Dianrez said...

Sorry for implying you were with the "industry" that I criticized. Parents are a special class to be respected.

The late Barbara Sachs humorously said there were four motivators for people working with the deaf. The first is to save them; the second for compensation; the third, a combination of the first two; and the fourth, for omnipotence, or superiority. One can guess doctors belong to the fourth group.

Talking over the patient's head is the ultimate disrespect that can be shown by a doctor. Hope you taught him good.

Unknown said...

Hi Dianrez,
In regard to this:
Talking over the patient's head is the ultimate disrespect that can be shown by a doctor. Hope you taught him good.
...he didn't talk over the patient's head, he made sure all was understood. He is an excellent surgeon who performs his job with compassion. I kind of see things from a different perspective now that I am on the "inside".
I would have preferred another type of approach, but that's me, I can't change the world. I can only observe and interact in my own way taking into consideration points that may be missed or reinforcing those which helped.
Sharon- you are my conscience speaking (dammit). Give me time...
I'm relatively new at this.

Anonymous said...

smiling....that's why you need us. hugs -Sharon

Michele said...

Hello everybody! I'm Michele, the guy Jodi talked about in her post. First of all I want to thank her for the sweet words she wrote, they moved me to tears :) Then, the topic: all of you are right, sometimes we deaf people should stand on and *shout* to other people around us to communicate with us, however I should say that morning I was really phisically and emotionally tired of all those medical stuff and of going up and down from the city where I live (Florence) to the clinical centre where I'll get CI surgery (Pisa), a roundtrip of 200km every time... and obviously I'm the driver (ah, my beloved Alfa...) :D
At the meeting I was quite distracted trying to find the right medical papers that the surgeon asked for, I didn't notice that he was speaking, then I didn't care about it too much.
But when mom and I some months ago meet him for the very first time, he started to talk directly to mom and immediately we both said him: "Talk to me please, it's me that is going under surgery..." from my side, "Talk to him, please, he's perfectly able to communicate via lipreading and to speak properly" from her side. That time this behaviour *really* bothered me, then I thought that this doctor has so little time and he often meet people that don't have my communication's skills, so maybe he was looking for a "handhold". However, in this last meeting I was more worried to comfort mom about CI surgery talking with him, and obviously with Jodi, too, she really did a *great* work (hey Jodi, mom already loves you!)
And I want to say to the anon user that mom is very proud of me, because of how I, being deaf,am facing everyday life difficulties since I was a child, of how I succeeded in my goals despite it and of how I'm facing this whole new challenge that I'm approaching to brave, whether I'll do it or not. And she demonstrates it to me every time she has the chance to do it. *smile*

Michele said...

Ah, I forgot! I never, never, will stop to be merciful to live in Internet and CI era ;)

Michele said...

...ehrr... "thankful", not "merciful", sorry :P

Anonymous said...

Hi Michele,
Wishing you loads of luck and successful CI surgery!!

I understand that you were overwhelmed and the fact that the doctor talked "over" you towards your Mom that morning. I cannot stress the importance of our responsibility to continue educating people how they are to communicate with the deaf person. I've allowed many situation to be overlooked in my lifetime (I am 60) and realize that I need to do more to educate the people to be a better communicator with the deaf. It's been great since I stopped overlooking and make sure that the person looks at me and I tell them what my needs are (I remind them and say "excuse me but I cannot understand you if you are not looking at me"). Talking over my head happens less and less with those I have contacts with on occasion because they "remember" me and my needs. I also let them know they don't need to "shout". Often they have no clue how to talk with you unless you tell them...again and again.

So...good luck and I look forward to reading about your progress.


Anonymous said...

I've just discovered this blog today in my research for one of my assignments. I am a Deaf person who wears hearing aids and I am in a almost surreal area of my life where I am realising several things - none of which has got to do with this post.

As a Deaf child of Deaf parents, coming from a huge Deaf family, but still can speak, write and speak English fluently as well as sign in my native tongue - Auslan, I have to say that in some way, this post particularly distressed me. The idea that a CI will give a person the confidence to stand up for themselves is atypical of all the wrong beliefs that people have about CIs!

Certainly, I was raised in an era where my family opposed CIs, but I have developed my own opinion of CIs now and am pretty well informed of this procedure, as well as the costs and benefits involved. So this is not coming from an anti-CI point of view, but to state something like that - CI = confidence and balls, is just so wrong!

Just my two cents.