NAD's 1991 position statement on Cochlear Implants

For historical purposes - AFA is sharing the National Association of the Deaf (NAD) 1991 public position statement on Cochlear Implants
To see their current position statement on CI (approved in 2000) go to: http://www.nad.org/ciposition


to see and sign AFA's petition to the FDA for an impartial and independent investigation into the long term physical, psychological, social, and cultural impacts of CI on infants and youths - go to: http://www.petitiononline.com/AFA62509/petition.html
petition in ASL


Cochlear Implants in Children
A Position Paper of the National Association of the Deaf (1991)

Background. On June 27, 1990, the Food and Drug Administration approved the marketing of the Nucleus 22-channel cochlear prosthesis for surgical implantation in children aged two through seventeen. (Commercial distribution for postlingually-deafened adults was authorized in 1985; investigational trials began in adolescents, age ten to seventeen, the same year and in young children, age two through nine, in November 1986.) This recent FDA approval of marketing childhood implants, recommended by its Ear, Nose and Throat Devices Panel, was based on a submission by the manufacturer, the Cochlear Corporation, which reported on a total of 200 implanted children, ages two through seventeen, who had bilateral, profound sensorineural deafness.

The position of the National Association of the Deaf. The NAD deplores the decision of the Food and Drug Administration which was unsound scientifically, procedurally, and ethically.

Scientific errors. Implantation of cochlear prostheses in early-deafened children remains highly experimental. There is no evidence of material benefit from the device in this population and there has been no evaluation of the long-term risks. There is no evidence that the speech perception of these children is materially enhanced and there is evidence that many profoundly deaf children would have better, however limited, speech perception with conventional hearing aids than with implants. There is no evidence that early-implanted children will do better at acquiring English than they would with noninvasive aids or with no aids whatever. There is no evidence that early-implanted children will have greater educational success, and reason to doubt that they will since children with severe hearing losses do scarcely better in school than those with profound losses. The FDA Panel has required the device packaging to include the warning that congenitally deaf children may derive no benefit from the device but the evidence for that conclusion is also strong for children deafened below the age of three and possibly age five or later.

Current programs of research on cochlear implant with children are conducted without regard to the quality of life that the child will experience as a deaf adult implant user. It is presently unknown whether the implant, and the profound commitment of parent and child to aural/oral training that is generally required, will delay the parents' and the child's acceptance of the child's deafness and their acquisition of sign communication; and the costs associated with these likely delays have not been assessed. The impact of the implant and the associated aural/oral training on the integration of the child as an adolescent and adult into the deaf community, on the child's social, intellectual and emotional development and mental health have not been assessed. This failure alone to consider the impact of the implant on the child's future quality of life qualifies the implant programs as highly experimental -- just what the World Federation of the Deaf deplored when it resolved, "[Implant developments are] encouraging for persons deafened after some years of hearing [but] experimentation with young deaf children is definitely not encouraged."

Procedural errors. The FDA erred in failing to consult formally with organizations of deaf Americans and with deaf leaders and scholars knowledgeable about the acquisition and use of sign communication and English in deaf children, the psycho-social development and education of deaf children, and the social organization and culture of the American Deaf community. The research evidence makes abundantly clear that early-deafened implanted children will rely on sign communication in school and in much of their lives; many, perhaps most of these children will become or already are members of the American Deaf Community. Otologists, speech and hearing scientists, manufacturers, parents and members of the FDA staff were all consulted formally by the FDA in arriving at its decision; its failure to consult deaf spokespersons represents, if an oversight, gross ignorance concerning growing up deaf in America, or, if willful, an offense against fundamental American values.

Ethical errors. Experimentation on children is ethically offensive particularly in these circumstances: new and high technology that entails invasive surgery and tissue destruction is used not for life saving but for putative life enhancement; adults such as these children will become, when given the option of such prostheses, overwhelmingly decline them; the parents who make the decision for the child are often poorly informed about the deaf community, deaf heritage and culture, and communication modes available to deaf people and their families. Finally, the decision to surgically implant a young deaf child is ethically unsound for a more fundamental reason. There is now abundant scientific evidence that, as the deaf community has long contended, it comprises a linguistic and cultural minority. Many Americans, perhaps most, would agree that as a society we should not seek the scientific tools nor use them, if available, to change a child biologically so he or she will belong to the majority rather than the minority -- even if we believe that this biological engineering might reduce the burdens the child will bear as a member of a minority.

The National Association of the Deaf advocates the following course of action: (1) The Food and Drug administration should withdraw marketing approval and revise the procedures employed for evaluating proposals for authorization of cochlear implants in children. (2) The National Institute on Deafness and Other Communicative Disorders should fund research on the present population of implanted children which will allow a comprehensive assessment of risks and benefits for the child that include social adjustment, mental health and quality of life issues. Pending the outcome of those studies, the Institute should not fund any additional implanting of early-deafened children unless an overriding need for that experimentation on children can be shown and conducted on a small number under highly controlled circumstances with comprehensive evaluation. In all research concerning deaf children, the Institute should require for new or continued funding that research programs involve deaf leaders and experts on the cultural aspects of deafness. Research programs that implant children with cochlear prostheses should include measures of material enhancement of speech reception and production, such as open-set recognition of ordinary conversation in moderately noisy environments, with and without lipreading support. The Institute should further convene meetings of medical ethicists, otologists, audiologists, deaf leaders and scholars of the cultural aspects of deafness to examine the ethical issues underlying research and practice in childhood cochlear implant, and it should fund research on these ethical issues. (3) Implant teams at hospitals around the United States should refuse to surgically implant early-deafened children and should provide a copy of this position statement to parents requesting such implantation for their children. Parents should also be provided with printed information concerning organizations of deaf persons in their community and other sources of information about the deaf community, its culture and its language and heritage.

Prepared by the Task Force on Cochlear Implants in Children Dr. Harlan Lane, Chair; Dr. Barbara Brauer, Dr. Larry Fleischer, Joyce Groode, Nathie Marbury, and Michael Schwartz, Esq. Submitted 12/23/90; approved by the NAD Board of Directors, 2/2/91.

AFA petition to the FDA for an investigation of Cochlear Implants

view at youtube if video not playing here

To sign the petition


To: Food and Drug Administration (FDA)
Dear Commissioner Hamburg,

Audism Free America (AFA) requests that the Food and Drug Administration (FDA) establish an independent and impartial investigation into the long term physical, psychological, social and cultural impact of the surgical insertion of cochlear implants (unilateral and bilateral) into the bodies of infants, children and youth.

The current research related to cochlear implant surgery has focused on medical issues and auditory functioning and has been undertaken by doctors. Yet, even medical risks associated with the surgery do not appear to be fully reported. The psychological and linguistic development of Deaf children is not solely a medical matter; there are issues of language acquisition, socialization, and psychological well-being; these have received very little attention. Thus, it is essential that the FDA-formed group conducting this impartial investigation must include Deaf and other individuals who are knowledgeable about Deaf culture, American Sign Language, human rights, audism* and linguicism (language based form of audism) since these are presently absent from the current research. There must be full transparency, full disclosure and an assurance of no built-in bias.

*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.

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. Because these infants and children are unable to give informed consent and are being denied a fully natural and accessible language, cochlear implant surgeries have also been identified as being a violation of human and linguistic rights. Clearly, the FDA needs a more in depth consideration of the moral and ethical issues associated with cochlear implants.

Given that the FDA is responsible to ensure the safety and effectiveness of these devices and protect the rights of citizens:

We, the undersigned, call for Federal Food and Drug Administration (FDA) to immediately initiate an impartial and independent investigation into the physical, psychological, social and cultural impact of cochlear implants on Deaf infants, children and youth.

Sincerely,

Sign petition at: http://www.petitiononline.com/AFA62509/petition.html

AFA shares excerpt of Dr. Humphries dissertation re: audism

Excerpt from Tom Humphries’ dissertation:
Communicating across cultures (deaf-hearing) and language learning (pp. 7-10)

Reprinted here with permission from the author - many thanks to Dr. Humphries for coining the term Audism and for examining the unexamined.

"I grew up in a hearing environment and had all the values, behavior and mannerisms of a hearing person. I was especially proud of my success as a deaf hearing person. For all the wrong reasons. Every time I “passed” for hearing, I was extremely proud. In my isolation from other deaf people, I thought of myself as the only one of my kind. I disdained sign language. I was extremely proud of my English, my speech and my ability to communicate with hearing people where other deaf people could not. Needless to say, I felt superior to other deaf people. This was based on my ignorance of what other deaf people were like. From what I could see they were limited, uneducated people and it embarrassed me greatly to be identified with them. I delighted when hearing people compared me to other deaf people and labeled me successful and exceptional. I actively participated in putting down those people who signed, could not use English fluently, could not speak, and could not pass for hearing.

If I were asked, I might say I was hard-of-hearing even though I am profoundly deaf. If asked, I would recommend my experience, social and educational, for every deaf person. Those deaf people who were not as “successful” as I simply were not trying hard enough or were not gifted enough. Most of my life, I spent walking around in public places pretending to be hearing, trying to hide my difference. It is a lonely existence because you can speak to no one lest your difference be exposed. I managed to be happy most of the time by suppressing many, many feelings. I think it’s called “overcoming your handicap.” Why I thought that hiding it was “overcoming” it I do not know, except that this seemed to be the thinking of our society.

And society reinforced all of these ideas and attitudes of mine. Society demanded that I pass or be isolated completely. Society demanded that I conform and shamed me if I did not. Society talked of rehabilitation, institutionalization and charity for the handicapped. Society was perfectly willing to banish me to that twilight zone of invisibility for secondary members of society such as blacks, women, American Indians, and the blind. Society was willing to help me hide my difference if I wanted to go this route by teaching me to ignore and suppress my difference rather than acknowledge and accept it.

It was not until long after I had met other deaf people and lived with them for years that I began to acknowledge and accept this difference in me as something desirable. My education about myself and other deaf people began at seventeen. It took many years before I could actually think about deafness without suppressing how I felt about myself. For many of these years I continued to actively oppress other deaf people in many ways. I set myself up as an example of what a deaf person should be because it was a power trip. It was a power trip to compete with other deaf people for the rewards offered by the hearing society (good grades, jobs, scholarships, praise, inclusion, etc.) and win easily because I could speak, behave and think as a hearing person.

Where did I get disillusioned with these rewards? When did I begin to see what I had done to myself? When did I begin to recognize audist behavior? When did I begin to want to change? There are no dates, no events that I can isolate as being the beginning of change. I know only that I grew dissatisfied with the promises that society had held up for me. The promise of acceptance into society [sic]. It never happened. The promise of happiness as a full participant [sic]. It never happened. In a very real sense, the promise that my deafness should and would go away eventually because I would “conquer” it [sic]. It never happened. From this dissatisfaction came the questioning. It became very personal. The examination of my inner self to see what I really felt [sic]. Did I really like what I had become? Did I really accept being deaf? Did it matter if I were? Did I really know anything about myself? Was I in touch with my feelings? Was my attitude about deaf people the result of my own ignorance of my deafness? Was I as a person in the middle of dealing with other -isms really dealing with my audism? Was I as a person doing anything about my own needs? For that matter, did I know what I really needed?

Then the hard answers and the anger hurt. And the almost daily insights and learning about myself and my environment [sic]. Most of it painful too [sic]. Just how much I had bought into this system was painful to discover. I don’t think this is any different from the awareness that many women have suddenly found themselves with. I cannot emphasize too strongly that what happened to me was not any different from what happens to other people in other groups. The process of dissatisfaction, self-examination and striving for awareness and real change is something that is happening to many people. I am no exception.

I tried to relate feelings that I was having about what I viewed as oppression, discrimination and audism towards myself and other deaf people to what had and was happening to other minority groups. I found many similarities and this reinforced my desire to be aware of these things as they occur in my own environment. I began to wonder why I had let them slide by me in the first place. I was determined not to let them go by unquestioned anymore. I was determined to acknowledge them and call others' [sic] attention to them. It required that I eliminate these behaviors from myself. It required some confrontation with other people. It was a long time before I could feel good about being deaf, about other deaf people, about ASL and a deaf culture, about being different and a member of a minority group."


Reference:

Humphries, Thomas. 1977. Communicating across cultures (deaf-hearing) and language learning, Ph.D. dissertation, Union Institute and University, Cincinnati, Ohio.

AFA: links to editorial and article - Deaf Folks in the Press

The mid-west is giving some much needed press space to Deaf people and the Deaf experience.

Editorial by John Lee Clark in the Star Tribune (Minn. paper) examining the importance of human diversity from a Deaf and Deaf-Blind perspective
http://www.startribune.com/opinion/commentary/47071087.html?elr=KArksc8P:Pc:U0ckkD:aEyKUiD3aPc:_Yyc:aUU


Article in the Wausau Daily Herald about the Wisc. law mandating insurance companies cover Cochlear Implants and AFA's petition

http://www.wausaudailyherald.com/article/20090607/WDH06/906070321

AFA: Audism in the hospital and workplace

http://www.youtube.com/watch?v=G4mM6x1ouvw

Short vlog featuring a Deaf couple explaining how hearing son was told by a nurse to interpret for his parents while he himself was recovering from an appendicitis. Also comment about being passed over for promotion amongst hearing co-workers and then having hours cut while others remained full-time.

AFA: Audism in the workplace and not giving up testimony

if video is not playing above - go to http://www.youtube.com/watch?v=hbmqVkjFRyk

Short video of a Deaf woman explaining her experience at a small company where she was passed over for promotion and not allowed to get training by an engineer because she was Deaf. Instead of accepting this lot, she applied for work at Kodak and was hired there. When she gave her boss her 2 weeks notice he thought she should stay as did her co-workers to which she replied, "Do you really think I should stay here with no prospects of being promoted?" They realized it was a good move she was making. Overtime the small company she had worked at closed and her former co-workers joined her at Kodak, surprised and happy to see her doing so well. One day she was to get some updated training and saw that the same engineer that had discriminated against her in the past was to do the training. She left the area crying and when her boss, who valued her as a very good worker and person, found out the reason, he got the engineer to accept writing as a form of communication for the training. Years later when she retired the engineer approached her and congratulated her on all her years of good and hard work.