Partners
in Recovery
Adult
System of Care Conference 2000
-
by Anna Huskey
I
was asked by Betsy Clark, director of Community Connections, if I was willing to
be on a panel titled Integrating Psychiatry into the Recovery Process, at
the Adult System of Care Conference, April 26-28, 2000, in Santa Clara. This yearly
conference organized by the California Institute for Mental Health is geared to
those involved with public mental health care. The panel consisted of two
consumers, two family members, Louise Loots, and myself and three staff members,
Dr. Neil Adams, medical director of Santa Cruz County of Mental Health, Bonnie
Schell, Director of the Mental Health Client Action Network and Laurel Wilson
Coordinator of the Mental Health Resource Center. Consumers and family members
were asked to cite their negative and positive experiences with psychiatry. We
were asked, what is your definition of recovery? How has your experience with
psychiatry been helpful or not helpful in your recovery? Do you think your
psychiatrist believes in your recovery? Yes, I think that Dr. Adams is brave to
have these candid discussions. He said that in order to have quality, fear
needed to be absent. This panel was a fear dispeller for me. I spoke both
positive and negatively of my experience with private and county psychiatrists,
as well as the county system. Patricia Deegan said in her keynote that in order
to explore recovery psychiatrists, and all in the system, as well as the
consumer, needed to be willing to examine our beliefs.
I value being able to
listen to others on the panel. I heard these brave strong individuals going on
with their lives. One member defined her recovery as her diagnosis did not
define her. She is a person first, who happens to have a mental illness. She has
learned to live with her symptoms. They have not gone away. She has learned
coping skills. Dr. Adams candidly
admitted that the goal is to allow consumers to exit the mental health system
and that in order to do this, the client is to be viewed as a partner in their
own recovery. He said that it is real nice to know that he can always have a job
but that was not his objective. I also appreciated Laurel Wilson’s point in
representing families. She said
that early in a son or daughter’s illness the parent is very emotional and
concerned. Often they get labeled
as overprotective while this may be the natural reaction at this point in time.
The overprotective label may be stuck in their relatives chart describing the
parent. Parents continue to be treated this way even if they changed. Conference attendees followed the discussion closely.
Open discussion followed which encouraged further thought and dialogue.
We did not have enough time to answer all of the questions. We all felt that it was a success.
Our
panel discussion was the fifth day of this conference. I want to thank NAMI-SCC for paying for a hotel room shared by Louise Loots and myself as it made it
possible hear the keynote address and be in an afternoon workshop the day before
our presentation. The key note speakers were Jay Mahler, an activist in the consumer
survivor movement, and Patricia Deegan Ph. D., Director of Training at the
National Empowerment Center. Jay Mahler had advice for consumers and advocates a like “Be
patient, Be Kind and stick like a leach.” I think he finds this effective when
trying to change a mental health system to be to serving its clients. He noted
that over the past 30 years the mental health system has moved from a medical
model to a recovery model. He remembered the time when for years he slept 20
hours a day. More recently he has
put together an ambitious document The Recovery Model: A Conceptual Framework
and Implementation Plan with the Contra Costa County Mental Health
Recovery Task Force and distributed this to those at the conference. I have
made copies of this and Some Statements About The Recovery Process written
by the California Mental Health Directors Association, California Institute for
Mental Health for all NAMI-SCC board members. Jay Mahler advised that
consumers and advocates read Pat Deegan’s article “Recovering Our Sense of
Value After Being Labeled with Mental Illness” published in the Journal of
Psychosocial Nursing. April, 1993, and her video “Recovery: A Journey of the
Heart” available along with other helpful information at www.power2u.org.
Patricia
Deegan Ph.D., Director of Training, National Empowerment Center, had first hand
experience of what mental illness is. She
was diagnosed with schizophrenia when she was 17. After spending time in the
mental hospital and receiving with angry indignation
“the prophesy of doom and gloom,” that she would be taking medicine
the rest of her life from a doctor and that she would never get well.
She thought, “I am not an illness.”
She came home from the hospital and smoked cigarettes and drank cokes and
sat on the couch. She did not feel
motivated to do anything. Her
Grandmother came over and asked, “Do you want to go with me and go grocery
shopping today?” Pat said, “No.” This continued to happen everyday for
about two months. Then one day, she did not know what made her change her mind
she said, ”yes.” She pushed the
grocery cart for her Grandmother. This
is what she described as her first steps of recovery.
Some
of her recovery strategies were:
The
dream Pat Deegan dared to dream was that she could become a doctor. To have
power. She wanted to walk around with a big key chain with lots of keys on it.
She started out by taking a class at the junior college in writing.
This continued, taking a class at a time even though there were times
that she reentered the hospital. She
went on to receive her Ph.D. in Clinical Psychology.
Once she was asked to speak to a group of doctors. In the audience was
the doctor who had told her the prophesy of doom and gloom, that she would
always be taking her medicine that she would always be sick. He was sitting in
the second row. Pat mentioned that she is rarely tongue tied in front of an
audience but on this occasion she was a bit. At the end of her talk she decided
to deal with his presence directly and went to say hi. He said, “I was
wrong.”
Patricia
Deegan showed us data from 7 longitudinal studies. If you would like this
information contact the author. From
this data Deegan has written the following statement. She would like to have
every Psychiatrist make this clear to their client.
“Long-term
studies have consistently found that one half to two thirds of people diagnosed
with mental illness go on to a significant or complete recovery. Data shows that
even in the second or third decade a person can still go on to complete
recovery. I believe you can be one of the ones to recover. I am here to support
your journey of recovery.”
Deegan
stated there is no way of knowing who will be the ones to recover. At the onset
of the illness recovery should not be ruled out as a possibility for any one.
Recovery is not something that we wait until later to talk about. By allowing
this possibility we then can enable the road to be made by walking.
Deegan said that people
have found neuroleptics to be helpful. The story that does not get told is how
many human lives get buried under medication. “All I do is sleep all day. I do
not have the energy to do anything,” said one man. The doctor said, “But you are stabilized. It’s the best you can
do.” This man then moved to New
York state. He started a different
drug dosage. He became involved in his life. Pat Deegan said, “These are the untold stories. There are legions of
people who are drugged out of their gourds. I will ask for the rational use of medication. To use medicine along with
self help strategies. Compliance is not the road to recovery. There needs to be
room for the consumer to make mistakes. If
a mistake is made we do not abandon clients to suffer the natural consequences
of their choices.”
Deegan
mentioned several times, ”change is inevitable, progress is optional.”
It
gives me solace to know that many who are having a difficult period in their
lives have the possibility to go on to partial or complete recovery.
Pat Deegan wrote
COPING WITH VOICES: Self help
strategies for people who hear voices that are distressing, developed By
Patricia E. Deegan, Ph.D. Illustrated By Carolyn Affar
(Also available at www.power2u.org).
Additional
Information
on Recovery
Someone Believes
in Me - Article by Dan Fisher, M.D., Ph.D., author of PACE:
Personal Assistance in Community Existence - An Alternative to P/ACT,
about the strength of healing that people who have significantly
recovered from mental illness received from having someone believe in
them.
Recovery
from Schizophrenia - excerpt from Finding Hope in Schizophrenia:
Healing and Hope for Everyone In the Family by Louise Loots Thornton. Thornton is the mother of three children.
Two have been diagnosed with mental illness. Her son, diagnosed with
schizoaffective disorder, has been living with the symptoms for over 20 years.
Her daughter has a dual diagnosis and severe depression. Louise has been a member of
NAMI-SCC for over 15 years and co-teaches the
Journey of Hope class in Watsonville. She
is an English teacher at Gavilan College.
Wellness Action
Recovery Plan- Notes from a recent talk by B.
J. North and Sharon Kuehn, on WRAP: The Wellness Action Recovery Plan, a
program of self-help and recovery started by Mary
Ellen Copeland, a mental health recovery educator and author. Sharon
Kuehn
Recovery
from Schizophrenia is possible - A very large group of consumers has
achieved remarkable recovery. They are people who, in spite of ongoing
symptoms, have carved out a life. - From Monitor on Psychology, Feb.
2000
Studies
show that early intervention in schizophrenia may forestall the
worst long-term outcomes for this devastating brain disorder.
Schizophrenia
- A handbook for families - published by Health Canada, this
approaches treatment with more than just medication.
