Monday, April 28, 2008

Is Deafness a DISEASE??? *WTF*


Just in case anyone had any doubts, I have learned a lot in these past months as a deafread.com reader and blogger. I have absorbed a great deal of intensity from staunch ASL supporters, pain from deaf adults with CIs who feel rejected by the Deaf community, resounding pride expressed by CI sporters demanding validation and passion from commenters ready to fight it out in order to defend their views right here on my blog. Rockin' shit! So...when the time came to finish the cover of the Italian Edition of RALLY CAPS and Cochlear ITALIA wished to write an endorsement for the back cover, I was extremely excited until I took a further look at what they had written. (Actually, I'm still excited, but just wanted to post this...)

They called Deafness a DISEASE. Unacceptable. Deafness is not a disease, it is a huge part of the way of life of my son, it is one element of who he is as an individual and I certainly do not consider him diseased or having a disease. As we have discussed many times before, words hurt when used inappropriately and flat out improperly. That word was removed from the text IMMEDIATELY.

*THEN*

I had an issue with another one of my "buzzwords" that I have already spit on many times before..."Normal."

They wanted to include a quote that read, "This book offers an example of how modern technology can help one to live a peaceful and normal life."

Nothing "NORMAL" about this family. The gentleman from Cochlear was EXTREMELY cooperative, flexible and willing to listen to my point of view. Greatly appreciated.

The final decision after consulting the Pediatric Cochlear Implant Circle for suggestions because my overloaded brain was fried at that point and I couldn't distinguish between Italian and English was the following:

This book offers an example of how modern technology can help one to live a serene life among the hearing community. (rough translation)

My points are as follows:

The Cochlear Implant companies deal with modern technology and the great task of making a reliable, effective product so that sometimes they may need a little guidance in regard to the human issues brought to the forefront because of such a product.

*And*

I am learning and becoming a stronger advocate from all of the reading and devouring I've been doing of blogs on deafread.com and personal stories shared by parents on my yahoo support groups. Basically, I'm becoming one bad-ass informed bitch. *smile*

18 comments:

Li-Li's Mom said...

Beautiful!

Amazing to see that you have, and we can make a difference. Wonderful to see that Cochlear Italia was open and responsive to a new perspective -- although it is clearly a testament to your powers of persuasion.

But I have one issue: "serene"?!! I think I need to return our processors for repair, because for some reason, our household full of 2 year old is anything but serene these days :) , so either ours are broken or that big Australian company is sending out the wrong model.

Dianrez said...

That just delighted me! Goes to show that the Deaf Culture group influenced the CI group that the proper attitude is to be Deaf, not diseased! It counterpoints the growing acceptance of CIs among the Deaf community these days.

As for serene??? Maybe it's a cultural thing, does the word have more connotations in Italian than in English?

Anonymous said...

You have made my day, girl.

Dividing is a disease. Pathologcial views in the Deafread do not help us to understand their views better. Thus, we came from different backgrounds.

For instance, my dear online friend and a sweet-pie and beautiful vlogger(ex?), Mel aka Iammine who has a CI and also an ASL lover faced the discrimination in the deafread. I want to make a point is that she *loves* to hear the music. She considers herself a culturally deaf person but with the CI, she can hear very well. (She was born deaf, a stone deaf.) A vlogger does not consider her a culturally deaf person.

That makes me angry.

However, I am very proud of my two prominent bloggers that came to defend Mel's.

That is what dividing is a disease as an example.

By the way, congrats for getting the cover magazine! Whoo-hoo. I am excited for you. ;-)

White Ghost

K.L. said...

I want some serenity. They do not provide that with the implants here in the states. That must be an Italian benefit of your healthcare system. I have not had any serenity since my first child was born. I could use some sleep too. Just saying.

Val said...

Lucky for us, you are not normal and we're glad you don't strive to be. You wouldn't wear normal well, neither would I.(GRIN)

Jamerica said...

I understand with your feeling that they think deafness is like as disease. I don't care what they think of me. All I care about to pray for them cuz the world don't love us. We don't need to cussing them, not that Christian way. Best way for us to pray for them...

Cussing, hate, debate, lust, greedy, homosexual, forncation, rebel and pride is disease!

Moebius said...

Deafness as a "disease" to be "cured"... that's the point of CI advocates who want to implant deaf children.

Anonymous said...

Even medically speaking, deafness is sometimes a symptom or sign of certain diseases... or a sign of a certain gene change, or of several other things. In and of itself it doesn't constitute a disease.

As a mom who thought hearing was important enough to give CIs to my kids, I still know it doesn't make sense to call deafness a disease. Lacking a foot isn't a disease, either, but it could have been caused by one... or not.

JS said...

Moebius, regarding your view that CI implants derive from a view of deafness as a "disease," would you say that my daily use of a hearing aid is evidence that I see deafness as a disease?

I don't see what's so hard about looking at deafness through a medical point of view. When I go to an audiologist or a doctor, I expect them to see hearing loss as pathological.

But I also think it's possible to see deafness as a cultural phenomenon, for example, when one is in an ASL class or Deaf social event.

One doesn't have to stick to one model at all times. I think it's pretty easy to adjust one's Deaf/deaf identity depending on the context. Identity is a fluid concept.

And, as Jodi wrote with serenity, the word "disease" probably wasn't the right one in this context.

cnkatz said...

This post is a testimony of the benefits of deafread for ALL people. If not for DeafRead, would you have reached the conclusions you experience now?

Karen said...

Wow, whatcha got in them implants over there in Italy? They produce serenity? I'm flying over tomorrow! :)

Tales from the CI Gal said...

I agree with you about learning alot in the past few months. The most important thing I have learned is that I have more questions than answers. I also want to learn more about Deaf Culture, Deaf Community, ASL, CI, AVT, and everything involve with hearing loss.

Do I view my deafness as a disease, no I don't. I also don't view it as being incomplete. Scratch that off....deafness is not a disease in my opinion.

I also don't view my CIs as a cure since I don't have a disease or a disease does not have me.

So I am off with my blue Dixie cup with my "ice tea" the long island kind for a quiet evening being disease free.
Valerie

Abbie said...

Wow,deafness is a disease. That is an interesting thought. (tongue in cheek)

Leprosy, now that is a disease. I never viewed myself as a traveling carrier of the deaf disease, but I have been treated that way from time to time.

It certainly pays to be a well informed these days! :)

Kim said...

Way to Go Jodi-- You're educating and advocating with this book. This is an example of how contentious debates can lead to positive changes--- as long as we all try to listen. :-)

Jodi Cutler Del Dottore said...

Moebius...*yawn* the rhetoric is getting old...move on. Jodi

Jodi Cutler Del Dottore said...

And to all the rest who totally made my morning...You know, the word "serene" never really even struck me...but now that I think about it... It can stay, because aside from the fact that my life is anything but serene right at this moment, it's a helluva lot more serene than it was with hearing aids.
You guys kill me. (lol)
Jodi

Lisa C. said...

I had noticed that some hearing parents kept their children away from me when my 2 hearing boys were younger and I was told by a friend that it was because they believed that deafness was a disease. I said " What?? It's not contagious." I don't mind being deaf and I've been happy with who I am.

Kim said...

Oh LORD! Lisa C-- If I knew people like that I would want to keep my deafened kids away from THEM! Children have a hard enough time growing up without being exposed to that kind of smallmindedness! Some people are so backwards.