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Changing practices.

We have received many responses to On Display: Your Child is Being Humiliated (October/November 1991), by Lisa Blumberg, which described how "Doctors at hospitals and clinics which specialize in 'pediatric handicapping conditions' ... have traditionally displayed their patients in front of colleagues, residents, therapists and other professionals ... thus, they find it hard to perceive that anyone 'suffering' from a permanent 'handicap' would be interested in anything so supposedly trivial as physical modesty and privacy..."

One physician wrote: "1 was somewhat dismayed by the portrayal of physicians as insensitive .... I do not question the anguish these people relate in their testimonials, but I must take issue with the idea that all such situations must result in humiliation.

"My experience with this form of teaching has been very positive, involving a special patient, caring parents and perhaps a favorite physician. This physician, after discussion with the family and patient, presents the patient to the forum. During the time in front of the assembly, the mother or father holds and supports the child and if they demonstrate any anxiety or embarrassment, the session is ended.

"All of this is done not for the patient who is being examined. In actuality, it is being done for the benefit of physicians in attendance and the patients that they will encounter in future practice."

We believe the writer is a caring, sensitive physician. We assume that all helping professionals -- physicians, therapists, educators, social workers, rehabilitation workers, etc. -- have a deep personal commitment to serving the best interests of the individuals with whom they work.

In our personal experiences as clinicians and educators, we look back on many activities that we took for granted 20 or more years ago that are no longer appropriate. At times we are embarrassed by things we did in the past without considering possible alternatives. Fortunately, all of us -- professionals and parents -- grow and change as we respond to new experiences and changing times. It is useful to list some changes in professional practices. We know that readers will identify others.

* There was a time when hospitals for children limited the amount of contact parents had with children during a hospital stay and would not even consider allowing a parent to stay overnight with a child.

* In the past, mothers (and fathers) whose babies were born prematurely and needed to remain hospitalized after the parents went home related to their babies through a glass window. Today, they are actively involved physically.

* Parents of children with disabilities had little or no input in the education or special services their child might need. The idea that parents might be experts about their own children and their child's most important teacher was unheard of.

* Parents or people with disabilities participating as lecturers in college classes in special education or in medical schools was once considered absurd.

* In 1973, we published an article by a parent who argued that parents had the right to read their children's medical and educational records. At the time, many professionals considered it dangerous for parents to do so. Now it is standard practice.

* Teenagers used to be excluded from medical or educational planning discussions about themselves because it was felt they could not understand or contribute.

* Manufacturers of adaptive equipment and the retailers who delivered these products to consumers once believed that only doctors and therapists needed to know about available equipment.

* And, some years ago, articulate individuals like Lisa Blumberg, who happened to be people with disabilities, would not be expected to have important perspectives about anything ! Again, quoting from On Display, parents "often desperate for their child to receive any type of treatment and feeling they must be supremely grateful for any treatment the child does get, ... may not always be able to act as effective advocates." Similarly, children or adults with disabilities may be reluctant to challenge a request from a respected professional on whom they depend for specific expertise and care. This means that merely asking parents or children and adults with disabilities for their permission to have their "cases" used for teaching purposes can fail to recognize the nature of the relationship between a professional and his/her patients, clients and the members of the family.

Professionals need to explore the best ways to teach about people with disabilities while respecting the individual's right to privacy. Perhaps there are ways that modern video technology can be utilized effectively without the humiliation of public, in-person displays -- but video, too, can be inappropriately intrusive. Establishing discussions with consumers, parents and people with disabilities must be a part of the change process. By working together and reexamining traditional professional practices, we can be hopeful that none of us will participate in the kinds of unintentional humiliation described in Ms. Blumberg's article.

-- S.D.K. & M.J.S.
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No portion of this article can be reproduced without the express written permission from the copyright holder.
Copyright 1992 Gale, Cengage Learning. All rights reserved.

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Author:Klein, Stanley D.; Schleifer, Maxwell J.
Publication:The Exceptional Parent
Article Type:Editorial
Date:Jun 1, 1992
Previous Article:For fathers of children with disabilities.
Next Article:Test child, real child.

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