In Drs. Steve Gutstein and Rachelle Sheely's book Under the Big Umbrella,
The Underground Guide to the Pervasive Developmental Disorders, they list
some actions that have proved helpful for parents and family members of a
newly diagnosed person.
Refrigerator Mothers
On the Killing of Children Over Depression
& Poor Services Commentary
What to Do After the Initial Diagnosis
Don't panic and rush into things
Read selectively
Give yourself a chance to cry if you need to
Don't test your child to death
Make sure you have your emotional and respite support system in place
Stop talking to anyone who blames you
Find a Team Leader
Make a plan
Become the expert on your child
Don't feel like you have to do every type of treatment
Don't fight every battle at the same time
Development does not happen all at once and can't be forced
Develop some way of talking to well-meaning people about your child
Be hopeful about the future
These are words that all of us need to revisit from time to time (not just
when our family members are first diagnosed). Each and every time we
come to a new path to choose from on our 'road of life' we need to consider
this list, and make sure that the new path will accommodate these actions.
Remember, be encouraged and know that you are not on your road alone.
A film by David E. Simpson, J.J. Hanley, and Gordon Quinn, Kartemquin
Educational Films.
Presented by the Independent Television Service.
The World Broadcast Premiere of Refrigerator Mothers
will be on July 16, 2002. From the 1950's through the 1970's, children
with autism were widely thought to be victims of inadequate parenting.
Influenced by Psychologist Bruno Bettelheim, mental health and medical
professionals claimed that autism was the product of mothers who were cold,
distant, rejecting and unable to "bond properly". They were
labeled "refrigerator mothers".
The film explores the stories of seven women, all but one of whom were told
by psychologists or physicians that they were to blame for their child's
autism. The only exception, who is African-American, was told that her
son could not be autistic because she did not fit the usual pattern: middle
class, highly educated and white. She was told, instead, that her son
must be emotionally disturbed. Yet these courageous and resilient
women refused to be crushed by the burden of blame. Today, they have
strong, supportive relationships with their now adult sons and daughters
and, in a variety of ways, have helped them to find their place in the
world.
The video features historic broadcast interviews with
Bettelheim himself, as well as excerpts from both Hollywood features and
mental health "training films" of the period. Offering fascinating
insights into the history of our understanding of mental illness and
developmental disabilities, this fascinating and disturbing video raises
questions that are of profound relevance today.
"Refrigerator Mothers" broadcast date: July 16, 2002 -check your local
listings for the PBS station and time.
by Dick Sobsey From the SCHAFER AUTISM REPORT
(formerly FEAT Daily Newsletter)
SUBSCRIPTIONS: SUBS@doitnow.com
[Below is an analysis written last year by Dick
Sobsey, a professor at the University of Alberta who has published
extensively on the issues surrounding abuse and disability. Sobsey wrote
this at a time when several murders of people with disabilities were making
the news. Thanks to Greg N. on the CAL-DD list.
The murders of a young girl in Montreal and a man
in Philadelphia [recently] compels me to write this. It came in the same
week that I wrote a letter to a London Newspaper on the subject of depressed
and underserved parents who kill their children with disabilities and the
same week that in Vancouver, the report on the Katie Lynn Baker Homicide has
focuses on how services let a family down and doesn't ask why no one has
been charged with that homicide.
There are several points that I feel are
essential to make.
1. Clinical depression is an illness that as far
as we know is mostly biologically determined and in
many cases can be
treated successfully. You do not "catch this" illness from having a disabled
child or from getting lousy services.
2. The primary service needed by parents
who have this problem is not respite care or free diapers
or a more
inclusive program for their child. They may need these things and deserve
all those
things and more, but genuine clinical depression has a lot less to
do with the circumstances people
are in than
with internal factors. The
primary service these people need is mental health care.
3. Reinforcing the notion that parents are driven
to killing their children (and sometimes themselves)
by the lack of services
is almost certain to do more harm than good. For people who are getting
close to the edge of doing violence to themselves and others, certifying
their thinking as rational
and their behavior as justifiable increases the
probability that they will go over the edge.
4. Constructing suicide or homicide as
justifiable by the circumstances also stops people in those
circumstances,
their families, and the people who provide services for them from getting
the help
they need.
5. I am not saying that these people are
necessarily bad people, most are not. I am saying that in
many cases they
are sick and need treatment not pity that feeds their sickness.
6. After studying hundreds of these killings, I
am convinced that like people who are suicidal, displaced
anger is often a
factor in these cases. Parents who feel that they have been ignored by the
system,
their friends, their spouses, or whoever and cannot direct their
anger at the real target displace that
anger on to their children and
sometimes themselves. The feeling of being hard done by may well be
justified in many cases, but it would not justify the parent for shooting
the school principal who bars a
child from school, or the social worker who
cuts their services. Neither can it provide any sense of
justification for
turning that anger against a vulnerable person.
7. When we as parents exploit these cases by
saying it shows what crappy services can drive parents
to do, we encourage
this displaced anger. I am not recommending that we parents kill anyone but
I am recommending that we direct our anger into action to change the system.
8. When we say, look what this poor parent was
driven to do by the system and if things don't get better
more of us parents
may just do the same thing, we are holding our children hostages. We
are
collectively threatening to harm them if society doesn't take a little
better care of us. The biggest
problem with this is that hostage taking
always assumes that the person or people we are trying to
influence are more
about the hostage than we do. In this case, society does not care more
about our
kids than we do. Threatening that more parents will hurt kids
without better services will not improve
services, but it may arouse enough
guilt for society to tell us that they understand after parents start
killing kids.
9. We need positive image for parents not
negative ones. When we rationalize violence as
understandable considering
the rough situations families face, we are not helping anyone build hope
for
the future. For every parent who faces "impossible' circumstances and goes
to pieces, there are
ten who face rougher situations with faith and hope.
10. I love my kid. I realize that I am a lot luckier than a
lot of people who have a lot on their plate but I
have good days and bad
ones. Last week was a bad one. My back went out and I just couldn't move.
Maybe this has something to do with carrying a 75-pound kid up seven flights
of stairs to the water
slide half or trying to lift him into the van when
some jerk has parked 8 inches away and there is no
room to lift properly.
Maybe it has to do with averaging 4 hours sleep a night for the last 10
years.
I don't really know. May be things will get tougher one day. May be
we will lose the little supports we
depend on. No matter how bad
things get, I don't think that I will ever want to hurt my kid. If I ever
did,
it would mean that there was something dreadfully wrong with me and I
couldn't blame that on a
lack of supports. I don't think I'm unusual in
this. I think it's pretty typical for parents of kids with or
without
disabilities.
11. Murdered children with or without
disabilities are typically killed by their parents. May be some
parents are
just plain monsters. Most of them are stressed, depressed, confused, and
generally
have mental health issues. A lot of them need help and some of the
killings could have been
prevented if we got help to people sooner. If
we are going to be compassionate to people who kill
their children, lets be
compassionate to all of them. If we are going to be punitive, let's be
consistent
with that, but let's stop pretending that killing children with
disabilities is any different than killing any
other child. If you want to share all or part of this with
anyone else, you are more than welcomed to
do so.
- Dick Sobsey, ICAD Editior icadeds@pop.srv.ualberta.ca