NOTE TO WS PARENTS FROM
THE LENHOFFS:
Those of us who know and understand our WS
children realize that in a number of areas they are
cognitively impaired. In other areas, however, such as in
language, empathy, recognition of faces, and love of music,
they have a range of some rather unique abilities normally
not associated with the cognitively impaired.
Since this is the case, they are not
"retarded" according to any definition presupposing that
all of their cognitive functions develop more slowly and
never to the full extent as those in the general
population.
Nonetheless, in the public's mind, our WS
children are considered simply "retarded." And this
perception by the general public applies to many
cognitively impaired people who, like WS people, may have
special abilities.
Such an attitude pervades the workplace and
state bureaucracies which are supposed to help our children
find a place in society as adults. With this background in
mind, we wrote this article hoping to help change the
public's perception of the "retarded," which seems to be
the word they are accustomed to hearing.
Gradually we hope to educate the public that
cognitively impaired people have peaks and valleys of
impairments and abilities. That is why we use the term
"mentally asymmetric" (see Ability Network Magazine -
Spring 1995, "Heart to Heart" XXXXX issue, or www.wsf.org
under "Articles for Parents"), and Dr. Ursula Bellugi uses
the term "asymmetric abilities" when describing WS people.
Please feel free to reprint this article and
send copies to your local newspaper. Your comments are
welcome.
Howard and Sylvia Lenhoff, Williams Syndrome
Foundation
University of California,
Irvine, CA 92697-2310, USA
We thank Ms. Terry Monkaba for editorial
comments.
[The following
Op-Ed article was published on the Opinion Page, Metro 6,
in the Monday, May 5, 1997 newspaper, The Orange County
(CA) Register.]
There's Talent Where You'd Least Expect It
By HOWARD AND SYLVIA LENHOFF
THE ISSUE: We give up to
easily on those whom we consider retarded. They can be
helped to live rich and rewarding lives.
THE WRITERS: Howard
Lenhoff is a professor meritus, and Sylvia Lenhoff, a
retired administrator, at the University of California,
Irvine. The Lenhoffs are the parents of a Williams syndrome
child.
"I always thought that talent is a birth
defect," said the late Dr. Jonas Salk to us immediately
after he heard our mentally retarded daughter sing for a
Christmas party at the Salk Institute.
With the general public, however, there is
the perception that the retarded are capable only of work
in the "Four F's": Food (washing dishes); Flowers
(gardening and yard work); Folding (napkins in restaurants
or sheets as chamber maids); and Filth (custodial work).
We believe that Dr. Salk was right.
Depending upon the type and degree of the mental
impairment, a good number of people labeled mentally
retarded have a range of talents, some possibly even
greater than a large number of people of normal
intelligence. Such retarded people should be able to make a
living through their craft and fill a much needed role in
society if they receive training, help and encouragement.
This proposition is based upon our
familiarity with a neurodevelopmental condition which our
daughter has, Williams syndrome (WS). People have WS
because, since conception, their cells are missing a group
of specific genes from one of their chromosomes.
Hence, regardless of their parental or
ethnic background, Williams people, because they share this
same "microdeletion," are born with a range of similar
physical, behavioral, and cognitive impairments.
But researchers are now finding that
Williams people also share a number of abilities. These
abilities are remarkable considering the other cognitive
and physical problems of people with WS.
It is these asymmetries in their cognitive
abilities and behavior that make Williams people intriguing
to scholars and the public, and to their families. First,
although they have extreme difficulties with simple
additions and subtractions, spacial relations, logical
reasoning, and abstract ideas, they show a high level of
language development for "retarded" individuals.
Second, Williams individuals are people
oriented and "aim to please." They have an extremely warm
and kind personality and show a great deal of empathy in
understanding the feelings of others.
Finally, as a group, many show a great
love, appreciation, and talent for music.
Hence, we no longer call them retarded or
any of the politically correct names; instead we use the
classifier "mentally asymmetric" because they have their
peaks and valleys of cognitive abilities. In some areas
they perform miserably, and in others, extremely well.
Mentally retarded is simply an inaccurate
way to describe these people, and possibly many other
populations currently thought to be impaired in all of
their cognitive functions.
When Williams people show great musicality
and sensitivity in their public performances, they quickly
dispel the prejudice that retarded folks possess no
talents. Some parents of Williams musicians believe that
their children, with training and guidance, could also help
dispel the assumption that cognitively impaired people can
not make a substantial living at such a sophisticated craft
as music.
To help achieve that broad goal, which may
well alter society's propensity to stereotype "retarded"
people, a group of Williams parents (associated with the
Williams Syndrome Foundation) are now developing plans at
the University of Texas, San Antonio, and at Belvoir
Terrace Music Camp near Tanglewood in Massachusetts, to
build academies of arts for cognitively impaired musicians.
Once trained as musicians and performers,
Williams people hope to fill a much needed role in the
health care system, a role for which their warmth, empathy,
and musicality make them extremely well suited. They will
serve as entertainers and comforters of the severely
disabled, infirmed, aged, and terminally ill. Most
professional musicians do not have the emotional stamina to
undertake such a role.
For this very possible outcome to be
realized, changes must occur in some basic attitudes toward
the mentally asymmetric where we least expect to find
strong misconceptions - among the professionals in the
public bureaucracies dealing with the mentally asymmetric,
and among the parents themselves.
Unfortunately, professionals employed by
local and state agencies see from very early on so many
cases of severe cognitive impairment, they take on the
assumption that most cognitively impaired people are quite
limited in their educational and work possibilities.
Similarly, parents, too familiar with what
their handicapped child can not do, and, possibly to avoid
disappointment, do not seek to have them succeed in such
challenging areas as the study of music.
Until professionals and parents are
convinced that mentally asymmetric people can contribute to
society through crafts beyond the "Four F's," we will not
be able to change the views of the general population.
We need local and state agencies, as well
as parents and families, to make a concerted effort to
explore the range of interests and abilities of cognitively
impaired individuals, not just those with Williams
syndrome.
Then if the parents give these children
training and lessons, just as they do in providing an
expensive college education for their normal children,
their skills should broaden. Finally, the professionals
must help introduce these able, trained individuals into
the community, and give them a start in making a living
through their proven skills.
Just to give the government professionals
an incentive, think of it, the more mentally asymmetric
people who become employed in more gainful fields, the more
tax dollars will be saved and earned.
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