Misrepresentation of Deaf Community's anti-CI views

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Posted: Thu, Feb  4, 1993  12:06 PM EST              Msg: MGJD-5633-2854
From:   R.POLLARD
To:     DEAFTEK.USA
CC:     DEAFTEK.PSYCH, R.ROSEN
Subj:   ALERT/IMPLANTS/N.E. JOURNAL OF MED.

                  PHYSICIAN MISREPRESENTS ASL AND
           DEAF COMMUNITY VIEWS ON COCHLEAR IMPLANTATION
         IN RECENT NEW ENGLAND JOURNAL OF MEDICINE ARTICLE

The January 28, 1993 version of the influential New England Journal of Medicine contains an article (Cohen, et al., pp. 233- 237) on a randomized study of different implant designs and an editorial (p. 281) by Thomas Balkany, M.D., of the Department of Otolaryngology at the University of Miami School of Medicine. It is Dr. Balkany's editorial to which I would like to draw your attention, specifically, to a number of inaccurate and misleading remarks regarding ASL and the Deaf community's stance on cochlear implantation.

The essay begins with a good, succinct summary of the medical aspects of the procedure and its costs. It is obviously meant to educate the broad range of physician readers, many of whom will be unfamiliar with cochlear implantation. It then goes on to make some accurate remarks about physiological risks and the wide range of patient outcomes. However, Dr. Balkany then begins to discuss "an interesting social question [that] has recently surfaced", namely, the reaction of "certain members of the deaf community" to cochlear implantation. He first notes that the Deaf community's "previous efforts to discourage the use of cochlear implants in adults have largely been abandoned". In reference to "organized attempts [which] are now underway [by the deaf community] to prevent the use of these devices in children...", let me quote directly the entire rest of the editorial, and then raise some issues.

     "Since the vast majority of deaf children are born to
     hearing parents, it is argued that the parents are incapable
     of determining whether their child's best interest lies in
     growing up with hearing or in silence.  The culture of the
     deaf community, although little known to mainstream society,
     is rich and fulfilling, and its members are rightfully proud
     of their accomplishments and way of life.
     "Nonetheless, the effects of deafness on development in
     early childhood ares such that Public Law 99-457, which
     deals with such development, mandates the identification and
     treatment of even mild degrees of hearing loss from birth.
     By the age of five years, a child with normal hearing will
     have a vocabulary of 5,000 to 26,000 words.  At the same
     age, a deaf child will have a vocabulary of only about 200
     spoken or signed words. [Here, he cites a 1977 deaf
     education text by W.A. Schwab.]  The fact that American Sign
     Language has no written form is one reason that the average
     16-year-old who relies on sign language reads at the third-
     or fourth-grade level [citing Conrad, 1979].
     "For these reasons, efforts to discourage the use of
     cochlear implants in deaf children are not in the best
     interests of many children or their families.  As Helen
     Keller concluded after living with both deafness and
     blindness, `To be deaf is a greater affliction than to be
     blind....To be cut off from hearing is to be isolated
     indeed.' [citing Keller in Van Cleve's 1987 Gallaudet
     Encyclopedia of Deaf People and Deafness]"

I BELIEVE IT IS CRITICAL FOR KNOWLEDGEABLE INDIVIDUALS TO RESPOND TO THIS BY SUBMITTING A LETTER TO THE EDITOR TO THE NEW ENGLAND JOURNAL OF MEDICINE BECAUSE OF HOW INFLUENTIAL AND WIDELY DISTRIBUTED THE JOURNAL IS. Of course, a response to Dr. Balkany himself might be made as well. I provide both addresses at the end of this message.

I have several concerns with this editorial. First, the "silence" comment is inflammatory and inaccurate, drawing upon old and oppressive stereotypes of the experience of deafness. Second, I think Balkany inaccurately characterizes the Deaf community's stand against cochlear implantation as based ONLY on the fact that deaf children have hearing parents who are not aware of deaf culture and therefore unable to determine their best interests. In fact, there are numerous Deaf community arguments regarding cochlear implantation. Many, many are not based on that issue but on specific scientific, educational, medical ethics, and other issues. Third, I am unaware of the specific law he cites but I'd like to hear about what others think about the implication that this law mandates cochlear implantation; that is what he's implying or at least hinting at. Fourth, the comparison of "vocabulary" size between hearing and deaf SIGNING kids is illogical. ASL lexicalization is so different (and more subtle at times) than the nature of lexicalization in English that the comparison is invalid and inaccurate. Fourth, it is clearly inappropriate to blame the low English reading level of deaf Americans on the fact that ASL is not written, when the majority of deaf children are not taught ASL in schools anyway. That argument is so confounded with other explanations, its ridiculous. Fifth, Helen Keller is not an authority on deafness and child development, nor was she even a prelingually deafened individual to whom you can accurately compare the children Balkany is discussing in the editorial.

AGAIN, I URGE YOU TO WRITE TO THE EDITOR OF THE NEW ENGLAND JOURNAL OF MEDICINE TO EDUCATE THEIR ENORMOUSLY LARGE READERSHIP ABOUT DR. BALKANY'S MISREPRESENTATIONS AND ABOUT ALTERNATIVE REASONS WHY COCHLEAR IMPLANTATION WITH CHILDREN IS A QUESTIONABLE PROCEDURE. THE ADDRESS IS:

Editor, New England Journal of Medicine
Massachusetts Medical Society
1440 Main Street
Walpham, MA  02254

The address for the writer of the editorial, Thomas Balkany, M.D., is:

Thomas Balkany, M.D.
Dept. of Otolaryngology
University of Miami School of Medicine
Miami, FL  33101

Review submitted to Deaftek.USA on 2/4/93 by:

Robert Pollard, Ph.D.
Dept. of Psychiatry
Univ. of Rochester Medical Center
300 Crittenden Blvd.
Rochester, NY  14642