Disability World
A bimonthly web-zine of international disability news and views, Issue no. 7 March-April 2001

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Gideon's Crossing: A Television Program Addressing Cochlear Implants with Comments from the National Association of the Deaf

By Barbara Kolucki (bakoluck@aol.com)

On Monday, January 29, 2001, Gideon's Crossing, a weekly U.S. television program on ABC, included a segment about a deaf teenage girl and her desire to have a cochlear implant. The show starred deaf actress Marlee Matlin as well as other actors who are deaf and hard of hearing.

The young girl visits the local hospital where the cochlear implant procedure is done. She talks with the doctor and other staff and is briefed about some of the pros and cons of the procedure. She reluctantly tells them that her parents are against it. However, she is adamant that this is her life and this is what she wants more than anything in the world.

Her parents come to the hospital and confront the doctor and staff. They are two professional deaf individuals-attorneys-and they clearly state that, "deafness is an identity, not a disability". They are proud of their deafness and culture and do not see themselves, or their daughter, as needing to be "fixed" or changed. They ask Dr. Gideon to try and understand--would he choose an operation to change his skin color from black to white?

The program does present both sides of this controversy, making it clear that it is not an easy decision for many deaf individuals or parents of deaf children. At the hospital, there are some staff members who cannot understand the parents' position and they vote to take the decision to the hospital board and to court. Dr. Gideon's position is not necessarily in full agreement with the parents, but with the hope that this should be a family decision made in consensus. He goes to the family and indeed, does get the mother to share her feelings of fear that her daughter will no longer want to be part of "their world and culture". When the daughter assures them that she will, the family then decides to allow her to go ahead with the procedure.

I did like the show and particularly thought that the deaf actors presented their side of the argument - and the strength of the deaf culture and identity - in a way that would be new for a majority of the viewing audience. I did, however, think that the one hour format (alas, the time in television it takes to solve most world problems) was not adequate to fully present both sides, particularly as the final decision was to have the implant. The show would have reached "award-winning" proportions in my eyes if they had at least one young adult nearer to the daughter's age who had decided not to have the implant and yet remained someone who this girl admired.

The emotional and social issues of adolescence and independence were confusingly intermixed with the deafness issues, and appeared to color the girl's decision. Would her boyfriend (who was hearing) like her more, even though he said it didn't matter what she decided? Was this procedure a sign of rebellion in the same manner as getting a tattoo or piercing (she did have one of them on her belly - I can't remember which!)

Still, the decision to have a cochlear implant was presented as one with two sides and many opinions. That the doctor understood some of the angst of the parents was certainly laudable. We need more shows with more opinions where more deaf individuals, together with parents of deaf children (both deaf and hearing), work together for individualized, holistic care of these children. It might be a while before many hearing people can understand that there can be pride in and total acceptance of a disability - or any diversity. But this show was a small step in the right direction.

The Position of the National Association of the Deaf on Cochlear Implants The National Association of the Deaf (NAD) stresses that there is as much diversity within the deaf community as there is outside it. As an advocacy and educational organization addressing the needs of all deaf and hard of hearing individuals, they state that this diversity "requires mutual respect for individual and/or group differences and choices". This diversity includes the issue of cochlear implants as well as various communication choices.

The NAD has recently issued a position statement on cochlear implants. It is intended for the deaf community, for parents of deaf children, for the medical profession, the media and the general public. It is rich with practical information and includes important issues that should be considered by anyone prior to making a decision about this procedure.

Firstly, it states that, "cochlear implants are not a cure for deafness". The technology continues to evolve and at present, they can assist the user to "perceive sound i.e., the sensation of sound that is transmitted past the damaged cochlea to the brain." One of the primary goals of the procedure, therefore, is to help deaf children learn to speak as a primary means of communication.

The NAD statement includes information regarding the fact that for pre-lingually deaf children or adults, the lack of experience and memory of sound might detract from the effectiveness of the procedure. Perhaps, it is posited, post-lingually deafened individuals might benefit most from cochlear implants at present. For either group, however, the decision to have the procedure includes a "life-time commitment by parents, educators and support service providers to auditory training, rehabilitation, follow-up and possibly additional surgeries". It is not a procedure like tubes in the ear or cataract surgery where the success is measured soon after the operation and then no "work" on the part of the patient is required.

The NAD statement affirms that parents of deaf children love their children and want what is best for them. In their effort to make an informed decision, the NAD encourages all parents of deaf children to spend time talking with successful deaf and hard of hearing children and adults who are fluent in sign language and English - those with and without implants. They also encourage parents to investigate other options, as well as the pros and cons of this surgical procedure. And, regardless of the choice made, they recommend that the "primary goal should be to focus on the 'whole child' and early language development/literacy and cognitive development.

The NAD is aware, as we all are, that it is still rare to see successful deaf children and adults who are presented in the media as proud of who they are and without the need and wish to become "non-disabled". There are a few exceptions, but perhaps it is the strong media images of deaf children and adults who have been portrayed negatively that influence parents to think of CI as a panacea for their child. Additionally, the fact that CI decisions are primarily mediated through the medical profession, whose job it is to "fix" things through surgery or aids, can also result in a one-sided presentation of what the possibilities are for a full, happy, contributing life for a deaf child.

What follows is a summary of the recommendations by the NAD with regard to cochlear implants:
  1. All medical professionals and interdisciplinary staff at CI centers should receive in-service training to guide and counsel parents of deaf children. This training should be conducted by professional counselors who are trained, qualified and competent to work and communicate with deaf and hard of hearing children and adults and their families. Psychological, social, educational, cultural and communications aspects of deafness must also be part of medical school curricula, especially in the specialty of otolaryngology.
  2. Prior to making a decision to have a CI, it is important to have a trial period of hearing aid use. This is especially true today with advances in the use of digital hearing aids.
  3. The Cochlear Implant Team should include individuals who advise with regard to the potential risks, limitations and long-term implications as well as benefits of CI. These teams should include and work with deafness professionals in education and the helping professions.
  4. Habituation, or the learning of and integrating listening strategies into daily life, must be a long-term commitment. Since listening alone is not enough for a newly implanted child to understand spoken language, a holistic approach also using sign language should be continued.
  5. The NAD recommends that medical insurance carriers provide fair and equitable coverage for hearing aid devices and associated support service.
  6. The media is encouraged to present non-biased material on the issue of CI and deafness.
  7. Longitudinal research is required to measure the long-term outcomes of childhood CI vs. those without implants. This research must be made available in lay terms and widely disseminated to the deaf community, to parents of deaf children and to all in the helping professions.
  8. Parents must become educated about cochlear implants. They have the need and right to receive unbiased information from all sides of this issue and from the deaf as well as hearing community.
  9. Services for children and families who have received CI need to be made available consistent with the Individuals with Disabilities Education Act (IDEA). The focus should be on the whole child and include education, psychological support, audiological assessment, auditory and speech training and language support.
  10. Deaf children have the right to an innovative educational environment. This includes children with and without CI. Auditory and speech training, together with an interactive visual environment utilizing sign language and English.
The NAD Website address is: www.nad.org

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