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.
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.
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*