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VOR Home
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This issue of the VOR
Weekly E-Mail Update is
dedicated to Bernard
Rimland,
Ph.D., Director and
Founder of the Autism
Research Institute. He
passed
away November 28, 2006.
He was 78 years old.
***************************************************************************
--------------------------------------------
VOR Weekly E-Mail Update
December 1, 2006
-------------------------------------------
===================================================================
1. In memoriam: VOR's
Tribute to Dr. Bernard
Rimland
2. Father of modern
autism research, Bernard
Rimland, dies at 78
3. "Community, my foot!
The LAPD, autism, and
residential
alternatives" by
Dr. Rimland
4. "BEWARE OF THE
ADVOZEALOTS: Mindless
good intentions injure
the
handicapped," by
Dr.Rimland
**Consider dedicating an
issue of VOR's Weekly
E-Mail Update or The
Voice
to your loved one.
Contact Tamie at
604-399-1624; or
vor@compuserve.com
for
details. **
Coming Up in Future
Issues of VOR's Weekly
E-Mail Update:
Florida's Tachachale
Center - looking to the
future; Missouri group
home
tragedy - lessons
learned;
Administration's
Medicaid Commission
releases
its final report; and
Dispelling Medicaid
Myths," a new VOR
publication
that focuses on the myth
of an MR/DD
institutional bias.
===================================================================
---------------------------------------------------------------------------
1. In memoriam: VOR's
Tribute to Dr. Bernard
Rimland
---------------------------------------------------------------------------
Dr. Bernard Rimland, a
respected renegade in
the field of autism and
developmental
disabilities, will be
dearly missed by
professional, family
and advocacy
communities. The many
"firsts" that can be
attributed to Dr.
Rimland began with his
breakthrough research to
dispel an early popular
notion regarding the
cause of autism. At the
time of his son's birth,
the
medical community still
largely blamed mothers
on the condition.
Knowing
his wife was not "cold
and distant," he
successfully set on a
path to
disprove one theory and
identify alternate
explanations.
As with his first
research endeavor, Dr.
Rimland's career was
marked by his
willingness to
successfully buck
conventional wisdom.
Whether addressing
behavioral therapies,
causes of autism
(including mercury-laden
vaccinations),
propensity of the
affliction (he was the
first to recognize
an epidemic), or service
options, he sought to
relentlessly pursue any
angle he thought might
advance autism research,
ensure proper supports,
and
empower families.
Of particular interest
to VOR members are two
articles - printed below
--
from the early nineties
which effectively
address significant
problems with
total
deinstitutionalization
at the hands of "advozealots,"
as he calls
community-only
advocates. Upon reading
these editorials, you
will at once
cheer and cry,
recognizing that some
issues, to the detriment
of the
population with mental
retardation, timeless.
Dr. Rimland's
self-admitted
"obsession" to learn all
he could about autism
- for his son and his
wife's benefit -- marked
the beginning of a long
and
distinguished career,
the benefits of which
ultimately extended well
beyond
the reach of his own
family. Thousands of
individuals with autism
and their
families have benefitted
from Dr. Rimland's work
over the more than past
40
years.
To learn more about Dr.
Rimland and his career,
please visit
http://www.autismwebsite.com/ari.I
think you will agree
that he's left an
important legacy that
will continue long into
the future.
VOR's sympathy is
extended to Dr.
Rimland's family and the
autism
community.
---------------------------------------------------------------------------
2. Father of modern
autism research, Bernard
Rimland, dies at 78
---------------------------------------------------------------------------
Father of modern autism
research, Bernard
Rimland, dies at 78
The Associated Press
Nov. 28, 2006
Bernard Rimland, a
psychologist considered
the father of modern
autism
research who founded the
Autism Society of
America, has died. He
was 78.
Rimland died Tuesday at
a care facility in El
Cajon, a suburb of San
Diego,
after battling prostate
cancer, his wife, Gloria
Rimland said.
Rimland was instrumental
in forming the way
doctors deal with
autism. His
1964 book "Infantile
Autism: The Syndrome and
Its Implications for a
Neural
Theory of Behavior"
dispelled the view that
the disorder was the
psychological byproduct
of uncaring mothers who
forced their children to
withdraw into a shell of
indifference.
Instead, he concluded
autism, which is
characterized by poor
language
skills and the inability
to handle social skills,
was the result of a
biochemical defect
underlain.
Rimland was one of the
first to surmise the
United States was
undergoing an
autism epidemic in which
one of every 175
children is now
afflicted.
Rimland founded the
Autism Society of
America, the largest
parent-based
autism organization in
the nation, with more
than 100,000 members and
supporters and 200
chapters.
Rimland was born in 1928
in Cleveland. His family
moved to San Diego where
he earned an
undergraduate degree and
a master's in psychology
at San Diego
State University. He
obtained his doctorate
at Pennsylvania State
University.
He married Gloria in
1951 and had a son,
Mark, five years later
who was
diagnosed with autism.
At the time, the medical
community blamed mothers
for the disorder.
Rimland was determined
to prove the theory
wrong. After
several years of
research, Rimland had
his book published which
was
initially ignored by
doctors but was highly
popular with psychology
students.
In 1967, he started what
is now known as the
Autism Research
Institute
based in San Diego, and
became an advocate for
intensive behavioral
therapy
for autistic children.
He served as a technical
advisor for the
Oscar-winning film "Rain
Man," in
which Dustin Hoffman
modeled his performance,
in part, on Rimland's
autistic son.
---------------------------------------------------------------------------
3. "Community, my foot!
The LAPD, autism, and
residential
alternatives,"
by Dr. Rimland
---------------------------------------------------------------------------
by Bernard Rimland,
Ph.D.
Autism Research Review
International
Vol. 5, No. 3, p. 3
(1991)
Many months have passed
since the vicious
unprovoked beating of
motorist
Rodney King by members
of the L.A. Police
Department first
appeared on our
TV screens. Most of us
have seen the replays so
often that we can summon
them toour mind's eye
without the benefit of
electronic equipment.
The Rodney King affair
unleashed a storm of
public outrage and
protest.
Cries for reform were
widely heard and many
suggestions for
improving
police accountability,
in Los Angeles and
elsewhere, were made.
Some
reforms have been
adopted. Despite the
highly emotionally
charged
situation, there were,
so far as I know, no
calls for the total
abolition
of the Los Angeles
Police Department, nor
the abolition of other
police
departments elsewhere,
where similar incidents
have since surfaced. It
is
widely understood and
accepted that even
though there are
instances of
abuse, police
departments perform an
important and necessary
social
function, and the good
they do far outweighs
the bad.
Contrast the above
situation with what has
occurred during the past
several
decades with regard to
"mental" institutions.
Historically, people
with
serious mental
incapacities such as
schizophrenia, severe
retardation, or
autism were left to
wander the streets of
cities and towns,
defending
themselves as best they
could from attack by
others, scrounging food
from
wherever they could find
it, including the
gutter, trying to find
shelter
from cold and snow. To
create a safe and humane
environment for these
unfortunate individuals,
society created
asylums-places of safety
and
refuge-far better than
living the life of
homeless and despised
vagrants on
the streets. Many of
these institutional
asylums did a wonderful
job.
Others did a very poor
job, and permitted
terrible abuse and
neglect of the
residents to occur.
Along came television.
Guess what? The public
was not treated to the
spectacle of clean,
well-fed and
well-treated mental
patients basking in
the sun or participating
in exercise classes in
well-equipped gyms.
Instead
the public was shown the
worst of the "snake
pits." Christmas in
Purgatory,
and the horrible
revelations about
patients' lives at
Willowbrook, were
presented to national
audiences. This of
course is to be
expected, and is
in fact a good thing,
because it exposed
problems that required
reforms and
led to the establishment
of state and federal
guidelines. But it gave
a
very distorted picture
of the true situation.
How much national media
coverage would have been
given to secretly
videotaped images of
LAPD
officers helping little
old ladies across the
street?
The exposés of neglect
and abuse at some
institutions led to an
indiscriminate smearing
of the reputations of
all institutions
everywhere,
and a concerted effort
to get patients out of
institutions into what
is
euphemistically called
"the community."
The
deinstitutionalization
movement took hold with
a vengeance. Countless
thousands of people who
are unable to cope with
the problems of survival
in
a harsh and uncaring
society were dumped into
the streets, or into
small,
privately run
facilities, under the
supposed protection and
care of a large
number of expensive, but
inadequate and
ineffective "community
mental
health centers."
Deinstitutionalization
proved to be a cure
worse than the disease.
At least five books have
been published in the
past three years
detailing
its tragic consequences.
Seymour Sarason of Yale
University, one of the
leaders of the
deinstitutionalization
movement in the U.S.,
describes these
efforts in his recent
autobiography, The
Making of an American
Psychologist. He
concludes that the most
serious professional
mistake of
his life was his
advocacy of
deinstitutionalization.
(I tip my hat to you,
Dr. Sarason. Few of us
have the courage and
integrity to own up to
our
mistakes.)
As the legions of poorly
fed, physically and
mentally ill homeless
persons
of our streets attest,
moving people out into
that wonderfully warm
and
nurturing mythical
"community" wasn't
necessarily a bright
idea. Some of
the institutions they
left were excellent
places; others were
terrible.
Some of the community
places they were moved
to were excellent;
others were
terrible.
If abuse and neglect are
going to occur, they can
occur far more easily
and
more secretly in small
group homes in the
community than they can
in a
major institution with
many other people
present. Group homes can
come and
go very rapidly. Some
last many years, others
last only months. It is
not
unknown for the
residents of such homes
to be left on the street
when the
owner of the facility
decides that he or she
can no longer tolerate
the
stress of trying to find
enough semi-qualified,
minimum-pay,
high-turnover
workers to care for the
residents.
The word "community"
needs careful
examination. It derives
from "common,"
and implies a degree of
coherence, shared
interests and concerns
that is
today rarely found in
urban environments. The
word "community"
conjures an
image of a white-haired
grandmotherly lady at
one's door, asking, "Can
you
use this freshly baked
apple pie? We just have
too many apples this
year."
When was the last time
this happened in your
neighborhood? Many group
homes
in the U.S. are located
in places that would be
better described as
urban
jungles than
communities. I am aware
of group homes in areas
that are so
dangerous that the
social workers will
visit them only in
pairs-on those
rare occasions when
there is any supervision
at all. I am aware of
institutions where real
community, caring
people, long term
relationships
exist in abundance.
Community once implied
human relatedness. Now
it refers merely to an
urban
area. Community
living-with no other
options-is an ideology
pushed with
religious fervor by the
sanctimonious but
misguided Association
for Persons
with Severe Handicaps (TASH).
I read with grim
amusement the complaint
in
their most recent
newsletter: "Although
persons with severe
disabilities
have been living in the
community physically for
some time, they have not
generally been
participating in the
shared life of those
communities." What
shared life? Community,
my foot!
Let us not be misled by
the warm fuzzy feeling
that the word
"community" is
intended to instill. Let
us not be misled into
the feeling of
abandonment
and neglect that the
word "institution" has
come to connote. I am in
touch
with literally thousands
of parents of autistic
children and adults
throughout the world.
Many of these children
are maintained in
healthy,
happy, and to them and
their parents,
satisfying environments
on farms and
ranches and in
institutions, public and
private, that the
parents do not
want to see closed or
abandoned.
While many, perhaps
most, urban group homes
are excellent, I
disagree
strongly with those who
insist that urban group
homes must be the only
residential option. I
favor the existence of a
variety of options to
fit
different family and
individual needs and
preferences. We need not
only
urban group homes but
rural residences, such
as farms and ranches.
And we
need institutions-good,
well-run
institutions-for some of
our sons and
daughters.
I believe that with the
proper technology, all
kinds of residential
facilities can be run in
safe and responsible
ways. Both small group
homes
and large institutions
could be monitored
frequently by randomly
scheduled
surprise drop-in visits
from inspectors who are
employed by advocacy
groups, rather than by
the organization running
the group home or
institution. Monitoring
by electronic
surveillance provides
another means
of protection.
Last year we published
in the ARRI (4/3) an
editorial titled "The
Non-Urban
Alternative," in which
we advocated the
availability of farm and
ranch
residences for autistic
individuals, such as
Bittersweet Farms or
Rusty's
Morningstar Ranch. For
many months afterward,
and even to this day, we
receive enthusiastic
letters from parents who
want that option
available
for their children when
they are no longer here
to care for them. That
rural option, the urban
group home option, and
the state institutional
option should all be
available so families
can exercise freedom of
choice.
---------------------------------------------------------------------------
4. BEWARE THE
ADVOZEALOTS: Mindless
good intentions injure
the handicapped
---------------------------------------------------------------------------
Bernard Rimland, Ph.D.
Autism Research Review
International
Vol. 7, No. 4, page 3
(1993)
In recent years our
society has increasingly
been directed-often to
the
great detriment of the
handicapped-by ideas
that are based on good
wishes
and fantasies rather
than on factual
information and rational
thought.
People who should know
better have subscribed
to the idea that if you
pretend that the
handicapped are not
really handicapped, the
handicaps will
disappear and everyone
will live happily ever
after. The legions of
mentally ill homeless,
seen shivering in
doorways and rummaging
for food in
dumpsters, are a prime
example of what can
happen when ideology
overrules
common sense. People who
are unable to care for
themselves, and were
once
sheltered, fed and
protected from criminal
assault in institutions,
are now
living in wretched
conditions in "the
community."
How was this
accomplished? In part by
the manipulation of
language. All
institutions were
characterized as
inherently oppressive,
and "the
community" as invariably
loving and supportive.
The people who wrought
such
great harm on the
institutionalized
mentally ill are still
at work. Now
they are destroying the
institutions needed for
the most severely
retarded
and autistic people.
Under the banners of
"empowerment," "human
rights,"
and "full inclusion,"
they have also set out
to destroy the special
education system created
by decades of advocacy
and hard work on the
part
of the families of
mentally handicapped
children. I have coined
the word
"advozealot" to
characterize the people
who purport to be
advocates for the
handicapped but are in
fact zealous advocates
of their own Alice in
Wonderland ideology, in
which handicaps can
simply be assumed out of
existence.
A major weapon of the
advozealots is
"politically correct"
(PC) language.
There are many forbidden
words. They insist that
words such as
"autistic,"
"retarded" and
"handicapped" not be
used. They insist that
the silly
euphemism "challenging"
be used to describe
severely self-injurious
or
assaultive behavior.
Professionals working in
the field of severe
mental handicap have in
recent
years been subjected to
ridicule, censorship,
and even intimidation to
compel them to comply
with the politically
correct language
insisted upon
by the advozealots, who
are certain that their
way is the only way.
One of the major
contentions of the
advozealots, the
self-appointed
spokesmen for the
handicapped, is that the
mentally handicapped be
referred
to by means of "people
first" terminology. One,
for example, must say
"children with autism,"
rather than "autistic
children." Professionals
who
do not comply with these
purportedly benign
edicts have been
threatened
with refusal to publish
their books and papers,
with rejection of their
grant proposals, and
even with the loss of
their jobs. Even the
federal
government has
succumbed. In Office of
Education Regulations
issued on
September 29, 1992,
"technical changes" are
announced which include
deleting all references
to "handicapped
children" in the
regulations and
substituting "children
with disabilities." Why
are our tax dollars used
to
promote such nonsense?
Insistence upon the use
of PC terminology is a
violation of the rights
of speakers and writers
to exercise their
freedom
of expression. If you
wish to say "children
with autism" rather than
"autistic children," go
right ahead. BUT do not
insist that I do so.
Although at first glance
the matter may seem
inconsequential-merely
quibbling about
words-the issue has real
implications about real
people in
the real world. It is no
coincidence that those
who insist on
people-first
language are also those
who insisted upon
closing institutions and
farm
residences, so
"community" living in
urban jungles is forced
upon the
handicapped. These are
the people who insist
that special education
be
discarded so that "full
inclusion" is forced on
the handicapped, and on
normal people as
well-very often to the
detriment of both
groups. Research
evidence does not
support these goals. It
is strictly an
ideological
campaign.
But why are the
people-first people so
zealous in demanding
compliance?
The answer brings us to
the crucial reason for
rejecting the
terminology
being foisted upon us by
the purveyors of PC.
Underlying the PC
terminology
is an insidious and
deeply pernicious
ideology that is based
solely on a
naive view which I call
the fantasy assumption:
if enough people join
the
fantasy, by choice or by
coercion, the fantasy
will come true. In the
present instance, the
advozealots appear to
believe that if one
deliberately trivializes
the difference between
mentally handicapped and
non-handicapped persons,
the differences will
somehow disappear, and
thus
no one will be
handicapped.
Reality does not work
that way.
Closing down
institutions for the
mentally handicapped on
the assumption
that there really was no
difference between
people inside and
outside those
institutions has not
worked. It has resulted
in the displacement of
tens of
thousands of now
homeless mentally
handicapped people to
the streets where
they must fend for
themselves. Playing
"let's pretend" is a
game that's fun
for children. Playing
let's pretend when the
lives of
people-especially
mentally handicapped
people-are at stake, can
lead to senseless
tragedy.
Contrary to what the
advozealots want us to
believe, being a "person
with
autism" or a "person
with retardation" is not
like being "a person
with a
plaid jacket" or "a
person with a cane."
Autism, mental
retardation, and
other mental handicaps
pervade and permeate
every moment of a
person's
life. You can't shed
autism, or retardation,
like a plaid jacket or
sunglasses. The PC
people are trying to
brainwash us into
believing, as
they seem to, that there
is no real difference
between the mentally
handicapped and the rest
of us, but there is. To
deny the difference is
to
reject the disability,
to paper over the
distinction. It deprives
the
handicapped of their
most valuable asset-the
recognition of their
disability by the rest
of us. It annuls their
right to our compassion
and
to the special treatment
they need if they are to
live secure and
fulfilling lives.
Pretending the
handicapped are not
really handicapped
robs them of the respect
they deserve for the
tremendous effort they
must
exert to achieve the
small accomplishments
that come easily to the
rest of
us.
Douglas Biklen, in his
book on facilitated
communication,
"Communication
Unbound," devotes the
last of the seven
chapters to "Ending the
Ability/Disability
Dichotomy." He entreats
us to abandon the
"blinders of
disability." He believes
(or at least appeared to
when he wrote the book)
that the supposed
ability of virtually all
the handicapped to
communicate
via facilitated
communication proves
that the handicaps were
not real:
handicaps are merely a
myth. Biklen's ideas are
specious. Yes, there are
people on the borderline
between normal and
handicapped. Does that
mean
that no one is
handicapped? Yes, there
are shades of gray. Does
that mean
there is no black and
white? Does twilight
disprove the difference
between
day and night? You can't
solve problems by hiding
from them, or trying to
smother them in a fog of
murky words. You are
much more likely to
solve
problems by recognizing
them explicitly and
thinking about them
clearly.
In a talk given earlier
this year, Clarence
Sundram expressed the
situation
with great clarity:
"...we have tended to be
seduced by the power of
these
new ideas of equality,
autonomy and inclusion
to the point that we
have
relied more upon hope
and belief than upon
good judgment and
careful
planning to help make
these ideas a reality.
In the process we seem
to be
replacing the old
stereotype of people who
are mentally retarded as
hopelessly dependent,
with the new stereotype
of a rugged
individualist,
capable of coping with a
hostile and dangerous
world, if only given the
chance. Both stereotypes
contain serious
misconceptions and fail
to
confront the reality
that ...mentally
retarded...embraces a
broad range of
functioning capability
and includes people with
significant areas of
incapacity as well."
How do we combat these
seductive but pernicious
ideas, which are being
implemented so
uncritically?
Do not meekly accept the
advozealots' arrogant
assumption of the moral
high
ground. Experience and
common sense should
carry at least as much
weight as
the strident repetition
of PC buzzwords. Do not
betray the handicapped
by
accepting the "people
first"/"challenging
behavior"/"in the
community"
ideology, nor any other
ideology which is
intended to trivialize
the
difficulties which beset
the handicapped. Speak
out: do not be afraid to
exercise your freedom of
expression, and freedom
of thought. The
advozealots, some with a
hidden agenda and others
with the best of
intentions, have done
much harm. If you are
truly concerned with the
welfare of the
handicapped, resist!
---------------------------------------------------------------------------
Tamie Hopp
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