7 August 2014
Dear LA Times and Amina Khan,
Your reporting of “L.A. surgeons implant device to help deaf 3-year-old hear” and “For a 3-year-old boy, a risky operation may mean a chance to hear”(May 7 2014 & July 22, 2014) consist of a repeatedly one-sided view of surgeries that have been performed on Deaf and hard of Hearing children as well as communicating approval of these attempts to eradicate a diversity natural to the human race.
This particular story illustrated gross negligence on the part of the medical profession. While you portray the FDA as “risk adverse,” the history of the FDA with Deaf children has not substantiated this. In the 1980s when early cochlear implants were being done, 12 Deaf children died. The doctors who performed this surgery knew at the time they did not have medication to cross the blood-brain barrier if children experienced infections due to the surgery. Yet, they went ahead. Later, the FDA only placed a brief moratorium on cochlear implant surgery (see Dr. Laura-Ann Petitto describe these events http://usdeafhistory.files.wordpress.com/2013/12/final-transcriptforpanelexcerptpetitto1.pdf). Why hasn’t THIS story been reported in any popular press? And guess who led that experimental surgery? Yep, Dr. House the same folks “helping” Auguste with the new auditory brainstem implant surgery. While all are admitting this brain surgery is “risky,” it communicates that being Deaf is something one should be willing to risk one’s child’s “perfect health” to eradicate. In addition, one wonders if the parents were informed of the link between numerous (more than one) surgeries in early childhood with later learning problems (see http://www.sciencedaily.com/releases/2011/10/111003080417.htm)
To further look at how the medical profession has addressed Deaf children and cochlear implantation, we refer you to the Harms Reduction Journal of April 2012 “Language acquisition for deaf children: reducing the harms of zero tolerance to the use of alternative approaches” which states “..the economic motivations behind the cochlear implant industry compounded by unrealistic optimism regarding the interface between technology and the human brain might be promoting earlier and broader use of cochlear implants in deaf children without adequate long term studies to support these actions…” and describes how the medical profession misinforms and coerces counter to the welfare of the child and his/her family (see http://www.harmreductionjournal.com/content/pdf/1477-7517-9-16.pdf). This disinformation is not limited to cochlear and brainstem implants but also includes stem cell experimentation on newborns and infants (see PR web by AFA objecting to this stem cell experimentation http://www.prweb.com/releases/2012/1/prweb9108761.htmwhich thankfully was stopped by the ethics committee after one year).
How long will the public be exposed to these mythical “miraculous” and one-sided views of cochlear implants/auditory brainstem surgery? These type of stories are becoming an incessant bit of medical propaganda where the media is complicit in promoting medical solutions to being Deaf---as a “cure.” Where are the cases of disappointed individuals and families that have suffered educationally, emotionally and economically due to the fact this ‘miracle’ did not happen in the long run? Where is your examination of the children who have had complications from this surgery? Have they truly made the lives of these individuals better??? We encourage you to look, not at the experience of the PARENTS, but at the experience of Deaf adults who have lived through such “miraculous” surgeries. Where is your examination of the cruelty done on animals in the name of cochlear implant progress?
We believe you, as journalists, should offer balanced reporting by showing families who choose to NOT have surgeries to fix their “perfectly healthy” Deaf child. We request that you to look at the human rights of a Deaf child and international documents which support the rights of the child (http://audismfreeamerica.blogspot.com/2011/10/international-documents-asserting.html). The actions by the FDA serve to highlight the medical community’s systematic effort to threaten the culture, language, and right to life of Deaf people—and therefore, endangering linguistic and cultural diversity in the United States.
We appeal to your journalistic integrity, to provide the public with a more complete and less prejudicial portrayal of Deaf people. We believe in the power of media---and in the responsibility of the news-- to promote truth and justice.
Let Freedom Roll,
Karen Christie, Patti Durr, and Ruthie Jordan for Audism Free America
Audism is attitudes and practices based on the assumption that behaving in the ways of those who speak and hear is desired and best. It produces a system of privilege, thus resulting in stigma, bias, discrimination, and prejudice—in overt or covert ways—against Deaf culture, American Sign Language, and Deaf people of all walks of life.