Friday, May 4, 2012

AFA's Letter to Director of International CI Conference: May 3-5

 April 25, 2012

John K. Niparko, MD                                                                    
Johns Hopkins University/River School Faculty
601 N. Caroline St.
Baltimore, MD  21287

To Dr. Niparko,
As the Director of the 12th International Conference on Cochlear Implants—a conference, which expresses a wish to “stimulate frank discussions” and address “controversial issues”— we believe you are in a position of great responsibility.  The first of which directly relates to you as a physician:  DO NO HARM.  This means you (as well as your colleagues and business corporations involved with cochlear implants) have an ethical obligation to discuss the recalls, the risks, lawsuits, long term effects, and the rights of Deaf children to be exposed to sign language. 
We, Audism Free America (AFA), are a grassroots Deaf activist network in the US[1]and we call your attention to a recent article in the Harms Reduction Journal (  titled “Language Acquisition for Deaf Children:  Reducing the harms of zero tolerance to the use of alternative approaches.”  Below are several quotes from the article:

“Medical harm can be due to errors or complications of treatment, but it can also be due to failure to properly inform patients of the information they need to protect their overall health now and in the future. Inappropriate care of the latter type lies usually in unawareness on the part of medical personnel and on lack of coordination among the various medical professionals. Here we discuss medical harm related to the use of cochlear implants with deaf children…
…Specifically, many medical professionals do not fully understand the ramifications of promoting speech-exclusive approaches and denying sign language exposure to a deaf child before and after implantation….
…Cochlear implant protocols that prohibit the use of alternative accessible language are causing linguistic deprivation in deaf children who do not acquire a first language by early childhood….
…The cochlear implant team must protect the implanted child by demonstrating ways that the family can raise the child with sign language. They should direct the family to sign language classes if the family has not already done this, and to support services that will help introduce the family to the Deaf community.”
In addition, many scholars have referred to the recent proliferation of cochlear implant surgeries coupled with the oral / aural only movement (prohibiting of signing and over-emphasis on auditory technology) as a form of eugenics that may lead to cultural and linguistic genocide of Deaf Americans. As you imply in the National Public Radio article of April 8th 2012, cochlear implant surgeries lead to the ‘choice’ of “being Deaf or not.”  Yet, infants and children are unable to give informed consent and parents are clearly not well informed. Coupled with being denied a fully natural and accessible language, cochlear implant surgeries then become a systematic violation of human and linguistic rights. Clearly, your conference needs to address the moral and ethical issues associated with cochlear implants.
Regardless of whether Deaf children have cochlear implant(s) or not, four major international organizations have declared that Deaf children should not be denied the right to a fully accessible signed language (see the World Health Organization (WHO), United Nations Convention on the Rights of Persons with Disabilities (UN CRPD), the World Federation of the Deaf (WFD), and the International Congress on the Education of the Deaf (ICED) New Era and Accord for the Future 2010 Agreement).  Thus, in terms of human and linguistic rights, we believe you have the obligation of sharing this information with those attending your conference as well as those who are considering cochlear implant surgery.
Furthermore, there have been many problems with cochlear implants that are shielded from the patients and parents - numerous recalls of cochlear implants for failing cold and failing hot.  Cochlear implant corporations have been fined by the Food & Drug Administration and the Department of Justice.  Complications from cochlear implant surgery such as death from infections, facial paralysis and as well as other complications are also of concern.  Physicians need to look further at issues related to the patients’ desire to have cochlear implants explanted later in life as this has been occurring more frequently.
Finally, in consideration of full disclosure and to ensure the trust of their patients, physicians need to disclose outside business (financial relationship with medical device companies) and educational (serving on the Board of select types of early intervention/educational programs) relationships.
We hope that you reaffirm your commitment to ‘do no harm’ to your patients and do the just and right thing by presenting these issues before those attending the 12th International Conference on Cochlear Implants.  Please contact us if you have any further questions:

Let Freedom Roll!

Patti Durr, Ruthie Jordan and Karen Christie for AFA

P.S.  You also may be interested in our response to the National Public Radio article in which you were quoted (“Cochlear Implants Redefine What It Means To Be Deaf”) in which we question if they are redefining what journalistic integrity means.  See:

[1] AFA advocates for Deaf American rights, cultural resurgence, and seeks primarily to challenge the ideological foundations of audism in 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.   Our primary commitments include:  ensuring the human and linguistic rights of Deaf people, unmasking audism and media misrepresentation, as well as advocating for future generations.