|
|
December 9, 2001 - News of the Week
ED KNIGHT: AN ESTEEMED ADVOCATE BECOMES A
POLICYMAKER
The wonderful news below came to us via NYAPRS E-News
(see below). The article is from Mental Health Weekly (MHW), December
3, 2001, an independent newsletter by Manisses Publications that
provides the latest information and analysis on public policy, business
trends, and treatment issues affecting the field (click http://www.manisses.com/).
Edward S. Knight, Ph.D., A National Consumer
Leader, To Become Vice President at Managed Behavioral Healthcare
Organization (MBHO)
It is believed to be the first time a
major MBHO has established such a high-level position occupied by a
consumer.
What Ed Knight has demonstrated is that you can
give people new medications and they will have fewer symptoms, but
their lives won't change until you change the approach to
treatment.¯
Ed Knight is a consumer leader who considers
capitated managed care the best vehicle for promoting recovery from
serious mental illness. That's not the only aspect of Knight's life
and work that some might find surprising.
After all, one of
Knight's signature accomplishments in recent years involves
spearheading a rural Colorado program in which seriously mentally
ill patients who had spent years in restrictive day treatment and
congregate living are now living independently, with many holding
jobs.
As of Jan. 2, however, perhaps the most unexpected
development will take place for Knight. Having worked in a
consulting capacity for six years with Colorado Health Networks, the
public-sector managed care partnership between managed behavioral
health care organization (MBHO) ValueOptions and a group of
community mental health centers, Knight will ascend to a full-time
position at ValueOptions: vice president for recovery,
rehabilitation and mutual support.
It is believed to be the
first time a major MBHO has established such a high-level position
occupied by a consumer and devoted to promoting a culture of
recovery across the organization. For Knight personally, his hiring
represents a major arrival point in an odyssey that began from a
psychiatric hospital bed more than 20 years ago.
"My dream
when I was in the hospital with mental illness was that someone
would keep track records on how therapists did with their
patients,"¯ Knight, 59, told Mental Health Weekly last week.
"I wanted to help people lead meaningful lives."
He has often
talked in the past about how many mental health professionals
dismissed his ruminations at the time as "delusions of grandeur."¯
But Knight remained motivated by the words of one provider who told
him, "Don't ever give up those delusions of grandeur. They're your
goals."
Under the new title that he will assume next month,
Knight will be in a position to duplicate the success of
empowerment-focused mutual-support programs for Medicaid recipients
with serious mental illness that he has coordinated in Colorado,
Arizona and New Mexico. His efforts will reflect a desire among
ValueOptions executives to move more forcefully toward a system that
creates more possibilities and expectations for the seriously ill
client.
"The company over the last several years has
recognized that it is good for consumers and for the business to
work more aggressively to transform the delivery system," Steve
Holsenbeck, M.D., executive director and medical director at
Colorado Health Networks and vice president of ValueOptions'
Colorado service center in Colorado Springs, told Mental Health
Weekly.
"Even the new antipsychotics haven't fully
produced the hoped-for results for people living in the community,"
Holsenbeck said. "What Ed has demonstrated in Colorado is that you
can give people new medications and they will have fewer symptoms,
but their lives won't change until you change the approach to
treatment."
Knight's initial efforts in Colorado in the
mid-1990s launched mutual-support groups known as Double Trouble in
Recovery, a national 12-step approach for people with co-occurring
mental illness and substance abuse disorders. As Knight began to
work more closely with consumers in the service system, he began to
hear more often that program staff members' attitudes toward their
clients constituted one of the biggest impediments to
recovery.
The emphasis of his work thus began to shift toward
the training of community-support program staff in principles
fashioned after the psychiatric rehabilitation model of Boston
University's Center for Psychiatric Rehabilitation (see Mental
Health Weeky, Sept. 4, 2000). At the same time, Knight had begun to
get involved in innovative projects in ValueOptions contract regions
in New Mexico and Arizona, including a grant-funded project in
Maricopa County, Ariz., that resulted in the formation of several
businesses offering work opportunities for Medicaid clients with
serious mental illness.
Regarding his early years working
with ValueOptions, Knight credits people such as former ValueOptions
executive Sandra Forquer, Ph.D. (now a vice president at
Comprehensive NeuroScience Inc.) with encouraging him to translate
his longtime goals into meaningful action.
"Her mantra was
that the best utilization management strategy was mutual support and
self-help,"¯ Knight said of Forquer.
But Knight stresses
that he and the people he's worked with have always based their
efforts in this area on data, not not mere anecdotal observation. He
customarily cites half a dozen studies that document self-help
strategies' value in reducing relapse to illness and
hospitalization, and thus their ability to reduce system costs in
the long run.
National impact
It's possible that
Knight would have been content to continue initiating
consumer-empowering programs at a state or regional level for some
time. But work that he became involved with in rural southeastern
Colorado would end up vaulting him to a position of national
prominence at the country's second largest MBHO.
A group of
about 120 public-sector clients with serious mental illness had been
receiving five-day-a-week day treatment services at Southeastern
Mental Health Services in La Junta, the only community provider
agency in the remote region. As Holsenbeck describes it, Knight was
discouraged about what he initially saw in the client population,
which was living in congregate housing and having to visit the
mental health center every weekday just to receive needed
medication.
"It was a very disempowered group of folks,"¯
Holsenbeck said. "At first Ed said, `This is hopeless.'" But Knight
and others gradually worked to create an approach built on the
factors that motivate all people: the desire to live independently,
to learn a skill, to help others and be helped in a supportive
environment. The effort has not been easy, but today most of the
region's Medicaid clients live in individual residential units; some
have home health aides to help ease the transition.
In
addition, 38 percent of the Medicaid clients with serious and
persistent mental illness in the Southeastern Mental Health Services
region are either working, volunteering or in school, Knight
said.
Also, a former group home in the area has been
converted into a crisis hostel where clients can walk in at any time
of the day or night to chat with someone, or maybe to stay a few
days.
Not only did these services improve patient
satisfaction and outcomes considerably, they proved more
cost-effective than the old way of doing things had been, Knight
said. That potent combination of doing the right thing and saving
money was not lost on ValueOptions' corporate executives.
When Elliot F. Gerson, president of ValueOptions parent
company FHC Health Systems, and Don Fowls, M.D., chief medical
officer at FHC, visited La Junta, they were "blown away" by what had
been accomplished there, in Holsenbecks' words.
Now they will
ask Knight to spearhead the introduction of such principles in other
states where ValueOptions has contracts. "No one can speak as
authentically as Ed can about what's possible," Holsenbeck said.
More goals
Knight hasn't stopped setting goals.
One area that he would like to explore involves whether the kinds of
recovery principles that have worked in the public sector could be
applied to commercial managed care.
Admittedly, a recovery
philosophy may be more difficult to define and track on the
private-sector side because it is harder to identify a critical mass
of people with serious mental illness. But Knight and others at
ValueOptions believe that if a way to do it could be found, they
would be in the best position to implement it.
"In the
for-profit world, when you realize that something will work, you can
implement it effectively and quickly,"¯ Holsenbeck said.
Knight is a believer, saying that ValueOptions has separated
itself from its competitors by looking at recovery and mutual
support as a
companywide policy. "It's the only [managed care]
company I'd work for,"¯ he said.
Source: Mental
Health Weekly is an independent newsletter that provides the
latest information and analysis in public policy, business trends and
treatment issues affecting the field. To subscribe, go to http://www.bhrpress.com/bookstore/write-ups/news_mhw.htm.
NYAPRS-member agencies can subscribe at the discounted (individual)
rate. (MHW has no advertising--and no ad revenue.)
This
"Mental Health E-News" posting is a service of the New York Ass'n of
Psychiatric Rehabilitation Services, a statewide coalition of people
who use and/or provide community mental health services dedicated to
improving services and social conditions for people with psychiatric
disabilities. To join our list, e-mail us your request and, where
appropriate, the name of your organization to NYAPRS@aol.com.
The National Stigma Clearinghouse will be happy to send you
additional materials by or about Ed Knight. E-mail your request to stigmanet@webtv.net. Be sure to
include a postal mailing address.
Article: "The Long Road To
Overcoming Schizophrenia," Albany Times-Union, Nov. 26,
1995.
One-page leaflet: "Rehabilitation: A Course Helps People
Develop Their Personal Goals," OMH News, April 1993.
One-page
leaflet: "Coping With Symptoms," Mental Health Empowerment Project
(date?)
"POSITIVE VISIBILITY" GETS A TRIPLE BOOST
from
Bill Lichtenstein, Ira Minot, and David Gonzalez
This week Bill Lichtenstein, the creator and producer of radio's
The Infinite Mind, is featured in The Sunday New York Times,
August 12, 2001.
Ira Minot, the founder/editor/publisher of
Mental Health News, is featured on the online website, Enabled
Online, August 9, 2001.
David Gonzalez, the creator of the
website SeeCineMania: Erasing The Stigma, has an online editorial
in Enabled Online, August 2001.
The two profiles and the editorial
are reprinted below. The original sources are The New York Times (http://www.nytimes.com/2001/08/12/arts/12MEIS.htm),
Enabled Online (http://www.enabledonline.com/corner3.html)
and Enabled Online (http://www.enabledonline.com/editorial3.html)
(1) Bill Lichtenstein, founder of Lichtenstein
Creative Media, Inc., is profiled in the Sunday Arts Section
(copyright New York Times 2001).
"ON RADIO, A JOURNEY THROUGH THE MIND," by ANDY
MEISLER
The Diagnostic and Statistical Manual of Mental Disorders, a
standard reference work for mental health professionals, defines
Dysthymic Disorder as "a chronically depressed mood that occurs for
most of the day more days than not for at least two years."
From his office on West 36th Street in Manhattan, Bill
Lichtenstein, the creator and executive producer of the weekly
public radio program "The Infinite Mind," got increasingly
enthusiastic recently as he riffed on how the syndrome could be the
perfect focus of an episode.
"We'd want to know what it's like to live with dysthymia," he
said. "Which brings up the question: What happens if we take all
these people and treat them? Would you, if you were dysthymic, take
a pill — or undergo a cognitive therapy or whatever — that would
guarantee you'd be happy for the rest of your life?
"So now you've got to get someone — a well-known observer of
culture — to do an essay. To talk about this dialectic: How is it
that some people feel that it's great to be happy all the time while
some people seek the misery of life? So let's find a comedian who
builds an act around being depressed all the time, and ask him or
her: What's that all about?
"And then there's the Anne Sexton thing. People say, `If we´d
had effective antidepressants in Anne Sexton´s time, we wouldn´t
have had her great poetry.´ The other side says, `Yes, but she would
have been alive and writing a lot longer.´
"So I say: Let's find some suffering poets! And ask them how
they work and how they feel."
In the media mainstream, explorations of human psychology
tend toward relationship makeovers and journeys into the minds of
serial killers. But "The Infinite Mind," a three-year-old program
that focuses on the nature of thought, the science of the brain and
mental health — and the subtle, often unfathomable interactions
between them — is not afraid to probe deeper. And later this month
an hourlong installment on dysthymia will join 117 previous shows on
topics like habit, shyness, clutter and hoarding, the insanity
defense, altruism, courage and post-traumatic stress disorder.
"Sure, it's a complicated subject," Mr. Lichtenstein, 44,
said, "but isn't it our job as journalists to take complicated
subjects and make them understandable and interesting? That's the
very reason we created the show."
"The Infinite Mind" is broadcast on 168 public radio stations
to an audience that averages around 500,000. It appears in wildly
disparate time slots; WNYC-AM (820) in New York currently runs it at
7 a.m. on Sundays. Mr. Lichtenstein and his five-person staff —
which includes his wife, June Peoples, as his senior producer and
chief deputy — execute their idiosyncratic format on a budget of
slightly more than $20,000 a show.
The show's host is Dr. Fred Goodwin, 65, a former director of
the National Institute of Mental Health and a leading expert on
manic depression, also known as bipolar disorder. Dr. Goodwin
handles the show's in- studio interviews as well as all
introductions and segues. Before he joined the show, he had no radio
experience.
"One of the reasons I took the job was to let the public
listen to a psychiatrist who didn't fit the stereotype — who
actually sounded like a normal person," he said.
John Hockenberry, the writer and NBC correspondent who has
contributed dozens of commentaries and essays for "The Infinite
Mind," said: "Dr. Fred wouldn't pass an audition, wouldn't even get
a callback, at any broadcast entity I've ever worked for. But on
this show he does a tremendous job."
Indeed, the soft-spoken, empathetic Dr. Goodwin — he often
concludes his interviews with a therapeutic-sounding "I'm afraid
we'll have to stop" — manages to keep himself and his interview
subjects relatively jargon-free.
"One of the interesting things we've learned doing the show,"
Mr. Lichtenstein said, "is that the top people in the field,
including Nobel Prize winners, seem to have gotten where they are
partly via their ability to explain their work effectively to the
general public."
In the hoarding and clutter episode, Dr. Goodwin intently
questioned a clinician who treats patients with obsessive-compulsive
disorder and a researcher examining the genetic and neurobiological
underpinnings of the problem — after listeners heard from an elderly
woman whose house had been taken over by decades of magazines and
newspapers. There was also a segment about a successful advertising
executive who had to face his fears and clear out his apartment
before he brought his newly adopted child home.
In the episode titled "Courage," a financial analyst related
how he had reflexively risked his life to try to save a couple who
had fallen into a nearly frozen lake; Dr. Goodwin talked to a
Polish-born Jew who was hidden from the Nazis by a Catholic peasant
woman and has become an authority on the sociology of courage and
altruism; and interviews were done with members of a New York Fire
Department rescue company and a researcher who is exploring the
psychological bases of courage and altruism and their siblings,
sensation-seeking and criminal aggression. Mr. Hockenberry, a
paraplegic since his teens, contributed an essay in which he
bemoaned being congratulated for having the "courage" to proceed
with life in a wheelchair.
One theme that runs through "The Infinite Mind" is that those
with mental illnesses and neurological disorders experience
suffering and social stigma — and fascinating, often unexpectedly
advantageous changes.
This can be traced to Mr. Lichtenstein's own experience. Born
and raised in the Boston area, he received a graduate degree from
the Columbia School of Journalism in 1979 and by his mid-20's was
producing segments for "20/20," "Nightline" and other ABC news
programs.
In 1986, when Mr. Lichtenstein was working as a producer and
director for a short-lived late-night television series called
"Jimmy Breslin's People," he began having paranoid thoughts and
delusions, including the conviction that the F.B.I had him under
surveillance and that he was receiving messages through his
television set.
Friends and co-workers convinced him that he needed to be
hospitalized. After several incorrect diagnoses, he was identified
as a manic depressive and placed on the proper medication.
"So I said to myself, `Well, now I can explain to my friends
what was going on,´ " Mr. Lichtenstein said. " `That I have manic
depression, but now I feel much better.´ As if that would explain
things. And then the phone just stopped ringing. I couldn´t get a
callback. People I´d worked with for six, seven years, with whom I´d
been through war zones as a journalist, just stopped returning my
calls."
The strain of joblessness, Mr. Lichtenstein said, made his
mood swings worse and complicated the task of getting his illness
under control. He was hospitalized several more times; by 1990 he
was supporting himself as an office temp.
With the help of a local support group for people with manic
depression, he managed to regroup. Reviving a long-held ambition, he
formed an independent production company, Lichtenstein Creative
Media.
Working out of his apartment, he started raising money for a
series of public radio documentaries on subjects he felt had
received grossly inadequate coverage: manic depression,
schizophrenia and depression. They were well received and won
numerous awards; he met Dr. Goodwin while producing the program on
manic depression. By 1998, with money from various private and
corporate foundations — including several unrestricted grants from
pharmaceutical companies — he was able to launch "The Infinite
Mind."
Although produced in association with WNYC, which contributes
studio time and other services, "The Infinite Mind" is not
affiliated with either National Public Radio or Public Radio
International, the two major suppliers of public radio programming.
The show is distributed free by satellite to any radio station that
wants it.
This means, Mr. Lichtenstein said, that he maintains
editorial independence. It also means that "The Infinite Mind"
receives far less promotion than programs like "Car Talk," "This
American Life" or "Prairie Home Companion."
Still, he said, the show is well enough established that he
and his team are contemplating both TV and book versions. And he
doesn't see the show running out of ideas anytime soon.
"I don't see any sort of end game," he said,
non-dysthymically. "The more subjects we do, the more subjects are
revealed to us."
Andy Meisler is a freelance television producer and
writer.
Note: Lichtenstein Creative
Media, Inc. contact addresses are as follows: E-mail, lcm@lcmedia.com. Website, http://www.lcmedia.com/
(2) Ira Minot, the founder/editor/publisher of
Mental Health News, is featured in Enabled Online, August 9,
2001 (http://www.enabledonline.com/corner3.html).
The article is reprinted below (copyright Enabled Online, 2001)
"CREATING A ROAD MAP TO MENTAL HEALTH," by GEORGE
SMITH
IRA MINOT
Three years ago his 10-year battle
with major depression had destroyed his life and left him homeless
and destitute. Friends and family alike had given up hope that he
would ever be the happy and productive man they once knew, but would
probably spend the rest of his life in a psychiatric hospital.
Today, you are likely to find Ira Minot at home working on
the next issue of Mental Health News, a new newspaper he founded
only two years ago. Another place you'll find Ira Minot is dressed
in a business suit speaking to audiences of leaders, survivors and
families within the mental health community, bringing them a message
of hope and inspiration.
"When I was out there struggling to overcome my illness, I
had three things working against me, above and beyond the already
relentless grip that the illness of depression had on my life. Those
three things were stigma, lack of information, and a lack of hope
that I would ever be well again."
Ira explains that finding the proper help for mental illness
can often take years of searching for the right treatment, and the
stigma toward people with mental illness, compounds an already
difficult situation.
"When a person falls ill to conditions such as depression,
bipolar disease or schizophrenia, the typical reaction of friends,
family and employers is one of frustration due to the invisible
nature of mental illness. People need to know that the victim is
neither lazy nor able to just snap out of it."
When he discusses his own struggle over mental illness, Ira
recalls how his own fears and reluctance to accept that he had a
mental illness caused him to make critical and costly mistakes in
his quest for recovery. "By not accepting that I had a serious
illness, I downplayed the need for me to stay on antidepressants
when I began to feel better, and I would only re-experience the
illness months or a year or two later in even greater intensity." He
further states that "Nobody gave me directions or a road map on how
to really get better or about the many programs that were available
in my community to help me find the support, information, advocacy,
and education which was critical to getting and staying well."
In the end, Ira was offered ECT (Electroconvulsive Therapy),
a controversial but highly effective treatment in breaking the
chains of depressive illness. For Ira the results were dramatic.
Six months after the treatment, Ira was planning how he would
re-build his life, and it was then that he knew that it had to focus
on helping others who would walk the same difficult path that he had
endured.
"I knew that like myself, people needed a Road Map to help
them find the latest information, education and advocacy surrounding
the whole mental health scene. Since one didn't exist, I created
Mental Health News and I distribute the newspaper free to area
hospitals, clinics and mental health organizations in the New York
metropolitan area."
Mental Health News now has over 60,000 readers in the
northeast and around the nation, and Ira has captured the respect
and admiration of the mental health community. This spring he was
awarded the Welcome Back Award, given for inspiring others who are
engaged in the struggle with clinical depression, by Eli Lilly at
the American Psychiatric Association convention in New Orleans.
"We are tackling some tough subjects and each issue of Mental
Health News tries to focus on a particular clinical area of concern.
Past issues have been devoted to The Crisis of Suicide in America,
Anxiety Disorders, The Miracle of NARSAD, Eating Disorders, and our
upcoming fall issue will focus on Posttraumatic Stress Disorders.
Local and National organizations have really helped me bring their
vital messages of care and hope for people who have mental illness
to our growing readership."
To subscribe to Mental Health News, Ira suggests contacting
him directly at the newspaper's E-mail address: mhnmail@aol.com or if you wish,
you can call Mental Health News at (914) 948-6699 or write to him at
65 Waller Avenue, White Plains, NY 10605.
(3) David Gonzalez, the creator of a website,
SeeCineMania, explains his views in Enabled Online, August
2001, (http://www.enabledonline.com/editorial3.html),
copyright Enabled Online 2001).
"SEECINEMANIA: ERASING THE STIGMA" by DAVID
GONZALEZ
Being told that I had an illness called manic depression, and
being treated worse than a criminal because of that "illness" made
me a very bitter person. I could never understand why I was treated
with such disdain. What had I done, I wondered, to deserve this
treatment? I couldn't help but notice during the decade that I
shuffled in and out of psychiatric wards that they were more like
prisons, than hospitals, and that there was a constant influx of law
enforcement officers. And while there were indeed instances when the
presence of such officers was necessary, more often then not, their
presence was merely precipitated by the so-called "irrational
behavior of an EDP" (police jargon for emotionally disturbed
person). It's what the "Treatment Advocacy Center" refers to as
"displaying disruptive symptoms of mental illness."
Why mental health patients who had committed crimes serious
enough to require the presence of law enforcement officers were
being brought to a psychiatric ward to be integrated with the
general patient population, was a mystery to me. As far back as 1875
(when psychiatry was still in it's infancy) the Association of
Medical Superintendents of American Institutions for the Insane,
drew up a list of tenets which were to be observed in the treatment
of individuals with mental illness. One of them stated that "insane
criminals should not be treated in ordinary state hospitals" (#17),
and another which stated that "the insane should never be kept in
almshouses or in penal institutions" (#16; see From Shaman to
Psychotherapist: A History of the Treatment of Mental Illness, by
Dr. Walter Bromberg).
Yet today we know that there are more mental health
recipients in city jails and in state prisons than there are in
psychiatric hospitals. I have no doubt that every illness known to
man can be found within our penal institutions, yet we do not
identify those illnesses as the cause of the criminal behavior of
its bearers - only in the case of mental illness is this acceptable.
Herein lies the cause of modern-day stigma, which is many times more
debilitating than the actual illness itself, and which in some
cases, can even be deadly. (Click-on to "Stigma Updates" at http://www.seecinemania.com/
for more information)
Of course, there are many ways in which stigma (which is
actually a socially acceptable form of discrimination) is evident,
not just in the treatment process. Stigma is evident by the fact
that many community coalitions lobby to prevent mental health
recipients from moving into their neighborhoods - (otherwise known
as "Nimby"- not in my back yard).
Stigma is evident by the fact that many insurance providers
do not cover mental health services to the same degree that they
cover other medical services.
Stigma is evident by the fact that most "normal" people will
shy away from individuals whom they know to be mental health
recipients. We are society's modern-day lepers.
But I believe that where stigma is most evident is in the
area of employment. Because of stigma, mental health recipients are
the most unemployed population in our society, which is why so many
of us are homeless. And we know that a major cause of depression for
most people, whether they are mental health recipients or not, is
unemployment. I remember one of my peers once telling me that
whenever he filled out an application for employment, he didn't mind
admitting that he was an ex-addict or a recovering alcoholic, he
didn't even mind admitting that he was once convicted of a crime,
but that he would never admit to being a recipient of mental health
services.
In mid-1999, New York City's Department of Mental Health
spearheaded a "Treatment is Working" ad campaign. These posters,
which read "For People with Mental Illness - Treatment is Working",
actually had a two-fold meaning: one was that - people who are in
treatment are recovering, moving on with their lives, and are
becoming productive members of society. And two was that - for some
mental health recipients "Treatment "is" Working (Employment)."
Proof of this was evidenced by the fact that calls regarding
employment to LifeNet (which handled the calls arising from the ad
campaign) rose from 10 a month in May of 1999 - to - 211 in July.
The stigma associated with mental illness, and in large part
promoted by the media, says that mental health recipients are
incapable of making rational decisions, are incapable of caring for
themselves, and are a danger to themselves and others. And because
of this stigma, many people who desperately need mental health
services will not seek treatment.
Unfortunately, like discrimination, stigma is one of those
social maladies that will probably never be totally eliminated, but
there are ways in which it can be diminished. One of the ways that I
contribute to diminishing stigma is by taking my job as a "Peer
Counselor" very seriously, and by going "above and beyond the call
of duty" whenever possible. I currently work on the adult
psychiatric unit of one of our city's major metropolitan hospitals
and my primary responsibility is discharge planning. Initially, when
I first started working there (I am the first "Peer Counselor"
they've ever hired), some of the staff were apprehensive about my
presence, because they knew that I was a mental health recipient.
But after proving to them that I could do the job, the doctors and
the social workers accepted me with open arms. I realize that my
performance on the job could potentially determine the hospital's
willingness to hire more "Peer Counselors," and so I am always
cognizant of my performance and my professionalism on the unit.
Ironically, in the late 1980's I was a patient in this very
hospital. Today I work there!
Another way that I contribute to diminishing stigma is by
always being aware of the words that I use. Rather than using words
like mentally-ill, or people with mental illness, I prefer to use
the term - mental health recipients - because I believe that this
emphasizes "Mental Health" vs. mental illness." But probably the
most effective tool I have for diminishing stigma is my computer. I
use it to expose the history of stigma and how it is being carried
on by the media today. I use my anti-stigma website "The Stigma of
CineMania... where movies create headlines."
I coined the term "CineMania" out of a sense of frustration.
It was my way of satirizing the media's obsessive, compulsive need
to portray mental health recipients as a danger to themselves and
others. It was my way of saying (tongue-in-cheek) "If there's anyone
guilty of manic behavior here, it is the media, not mental health
recipients!" Who are society's present-day role models for mental
health recipients? Norman Bates of the Bates Motel? Michael Myers of
Halloween? Freddy Krueger, the son of a hundred maniacs? And let's
not forget the screaming headlines demanding forced treatment
whenever a crime is committed by someone with a diagnosis. Rather
than putting the individual who has committed the crime on trial,
the whole mental health community is placed on trial. Never mind the
fact that most criminals are decidedly not mental health recipients,
and never mind the fact that most of them who are in jail - are
there for "Quality of Life" crimes. These are society's images of
mental illness. Not only does this mean being denied the opportunity
to live, work and thrive in the community because of unwarranted
fears, but it means that you are more likely to be killed by a law
enforcement officer for "displaying disruptive symptoms of mental
illness!"
http://www.seecinemania.com/
was created to confront the stigma associated with mental illness
and to challenge the media's portrayal of people labeled
mentally-ill as violent and deranged. It is designed to be
interactive by encouraging visitors to post their feelings about
stigma and to submit any articles, which are symptomatic of
"CineMania."
The CineMania message board is open to anyone who has
anything to say about the media representation of people with
psychiatric disabilities.
David@seecinemania.com is
the email address for David Gonzalez. David's website address is http://www.seecinemania.com/
May 6, 2001
A Cure
for Poverty
By ANDREW SOLOMON
What if you could help end
people's economic problems by treating their depression?
Wendy was born just below the poverty line, where she spent the
next 30 years of her life. These were grim times for her. When she was 6,
a disabled friend of her alcoholic grandmother began abusing her sexually.
In seventh grade she began to withdraw. "I felt there was no reason to go
on," she says. "I did my schoolwork and everything, but I was not happy in
any way. I would just stay to myself. Everyone thought I couldn't talk for
a while, because for a few years there I wouldn't say anything to anyone."
Her first boyfriend, from her neighborhood in the slums around Washington,
was physically and verbally brutal. After the birth of her first child,
when she was 17, she managed to "escape from him, I don't know how." Not
long after, Wendy, a petite African-American woman with grave eyes and a
wide mouth, was raped by a family friend. Soon after that, under pressure
from her family, she married a man who was also abusive. She had three
more children by him in the next two years. "He was abusing the children
too, even though he was the one who wanted them, cursing and yelling all
the time, and the spankings, I couldn't take that, over any little thing,
and I couldn't protect them from it." She also had to assume
responsibility at this time for her sister's children, because the sister
was addicted to crack cocaine.
Wendy began to experience major depression -- not simply the
generalized despair that might be expected of someone in her position, but
an organic illness that was utterly disabling: "I'd had a job, but I had
to quit because I just couldn't do it. I didn't want to get out of bed,
and I felt like there was no reason to do anything. I'm already small, and
I was losing more and more weight. I wouldn't get up to eat or anything. I
just didn't care. Sometimes I would sit and just cry, cry, cry. Over
nothing. I had nothing to say to my own children. After they left the
house, I would get in bed with the door locked. I feared when they came
home, 3 o'clock, and it just came so fast. I was just so tired." Wendy
began to take pills, mostly painkillers. "It could be Tylenol or anything
for pain, a lot of it, though, or anything I could get to put me to
sleep."
Finally one day, in an unusual show of energy, Wendy went to the
family-planning clinic to get a tubal ligation. At 28, she was responsible
for 11 children, and the thought of another one petrified her. She
happened to go in when Jeanne Miranda, an associate professor of
psychiatry at Georgetown University, was screening subjects for a study of
poor people suffering from depression. "She was definitely depressed,
about as depressed as anyone I'd ever seen," recalls Miranda, who gave
Wendy the diagnosis and swiftly put her into group therapy. "It was a
relief to know there was something specific wrong," Wendy says. "They
asked me to come to a meeting, and that was so hard. I didn't talk. I just
cried."
On any given day, roughly 18 million Americans meet the diagnostic
criteria for mood disorders, meaning that they have reached an emotional
low that impairs their functioning. Three million of those are children.
Depression claims more years of useful life in America than war, cancer
and AIDS put together, according to the World Health Organization's World
Health Report 2000. And the indigent depressed are among the most severely
disabled populations in this country. There are no reliable figures on how
many of these people there are, but 13.7 percent of Americans live below
the poverty line, and according to one recent study, about 42 percent of
heads of households receiving Aid to Families With Dependent Children meet
the criteria for clinical depression -- more than three times the national
average.
Despite the extended debates in the last decade about depression's
causes, it seems fairly clear that it is usually the consequence of a
genetic vulnerability activated by external stress. Most people have some
level of genetic vulnerability. Those with a high vulnerability can have
it triggered by a fairly minor event; those with a low degree of
vulnerability will be triggered only by more significant trauma. But among
the indigent, the traumas are so terrible and so frequent, says Miranda,
that searching for the depressed among them is like checking for emphysema
among coal miners. The depression rate among the poor is the highest of
any social grouping in the United States, so high that many don't notice
or question it. "If this is how all your friends are," Miranda says, "it
begins to have a certain terrible normality to it."
In travels to some fairly remote parts of the world, I found that
much the same rules apply to trauma-prone populations everywhere.
Survivors of the Khmer Rouge in Cambodia have an extremely high rate of
depression. Phaly Nuon, a Cambodian woman who has founded a treatment
center and an orphanage in Phnom Penh, describes seeing women who had made
it through the horrific years of war only to become so depressed afterward
that they let their own children starve to death in the resettlement
camps. She said that these women, born to grim lives of rural poverty, had
been disabled by what they had seen. I found similar phenomena among the
Inuit of Greenland, tribal peoples in Senegal, the urban poor in Russia.
Depression rates are very high all around the world among people with hard
lives, and these people tend to be disproportionately poor.
Depression can be difficult enough to recognize among the affluent,
but if you're way down the socioeconomic ladder, the signs may be even
harder to distinguish. When someone in the middle classes becomes
depressed and suddenly finds that he can't function at a high level, can't
work, begins to withdraw, he is likely to attract the attention of friends
and family members. But if you're poor, these symptoms don't seem much of
a change. Your life has always been lousy; you've never been able to get
or hold a decent job; you've never expected to accomplish much; and you've
never entertained the idea that you have much control over what happens to
you.
The depressed poor perceive themselves to be supremely helpless --
so helpless that they neither seek nor embrace support. This means that
most people who are poor and depressed stay poor and depressed. Poverty is
depressing, and depression, leading as it does to dysfunction and
isolation, is impoverishing.
March
4, 2001.
THE FOUNDER OF "STAMP OUT STIGMA" MAKES
HEADLINES
The San Mateo County Times
February 12,
2001
(Reprinted with permission)
PROGRAM SEEKS TO BREAK DOWN STIGMA OF MENTAL
ILLNESS
For
more information, visit the Stamp Out Stigma web site: click http://www.stampoutstigma.org/
by Martha McPartlin
Staff
Writer
For three years Carmen Lee sat motionless and
mute in a catatonic stupor in a pychiatric hospital room.
She
was unable to communicate with her husband, unable to care for her
young daughter and didn't leave the hospital for a total of five
years.
Eventually, Lee did recover, but the experience turned
out to be one of her first steps down a long road of depression and
mental illness.
At 60, Lee now uses the story of her life to
educate people through an organization she started, Stamp Out
Stigma. It deals with the human side of mental illness, in the hope
that education will lead to greater understanding.
Stamp Out
Stigma presentations consist of four to five rotating panelists. Six
of them spoke recently, with arresting openness, to a dozen
psychology students at the College of San Mateo.
"I thought I
would soar through the sky like a bird, " said panelist Ann Patti,
65, describing her fifth and last suicide attempt, when she drove
her car off a steep edge overlooking a valley near state Highway 92.
"All you know is you're in the grip of something you have to get
away from."
Patti is diagnosed with recurring major
depression with psychotic episodes.
By giving others a
glimpse into their lives, and answering frank questions from the
audience, Patti and the others intend to change pre-existing
perceptions of mentally ill people.
The group speaks to
nursing students, government mental health boards, suicide-pevention
groups, police and fire departments, and anyone else who asks them
to.
"We were all sick and tired of the media portraying us as
having knives in our pockets, guns in our purses and saliva coming
out of our mouths," Lee said.
The group began 10 years ago
and is primarily funded by the Peninsula Community Foundation, a
philanthropic organization, and small grants.
In March,
representatives will attend the first national conference on the
stigma of mental illness, put on by the U.S. Department of Health
and Human Services.
There are about 51 million people in the
nation who have a diagnosable mental disorder, and more than 9
million live with major depression, according to the National Mental
Health Association.
Lee recently got a request from the San
Francisco Police Department to speak to the top brass about the
group. Her appearance could be followed with a presentation to the
entire department.
At last week's presentation, almost all
the panelists began their stories by saying that they knew from day
one that something was wrong.
"My mother would say, "She has
an overactive imagination,' " said Patti, who asked her parents for
psychiatric help to no avail. "The only people (in the 1950's) who
went to psychologists were movie stars and people who ran down the
street with all their clothes off."
Ina Potoroff, 41, was
simply considered the "moody" child growing up.
"I didn't
know about the hell I was in for later in life," she
said.
Potoroff was a successful sales repesentative for many
years. The catalyst for her breakdown came when she lost her job and
began working for a verbally abusive boss.
Not long after,
she tried to commit suicide and thus began a series of
hospitalizations and years of treatment for bi-polar disorder, or
manic-depression.
"You're so depressed, you lie in bed and
all you want to do is die," Potoroff said. From a hospital bed, she
told her husband he'd be better off leaving her.
Instead,
Potoroff's husband stuck by her, but many of the panelists told of
family members who chose to walk away rather than accept their
illness.
"That's something that hurts more than the stigma of
mental illness," Potoroff said.
There was a history of mental
illness in Greg Wild's family, but with afflicted family members
being referred to as "lunatics" and "crazy," Wild, who is now in his
40's, had first-hand knowledge of that stigma from the
start.
While living with some sporadic depression, Wild
completed his master's degree and was working as a certified public
accountant when his illness got significantly worse.
It took
a year for him to acknowledge there was something wrong, and by that
time his business was gone and the bank had foreclosed on his
home.
Eventually he found himself homeless and in need of a
bed at a local shelter.
"It was so humiliating," Wild said.
"I spent an hour by the tracks thinking about jumping in front of a
train."
But there is no experience more dreaded -- a
sentiment shared by almost everyone in the group -- than a 5150, the
police code that means involuntary commitment to a
hospital.
One of the group's convictions is that a lack of
understanding of mental illness exacerbates police
confrontations.
Patti recalled the story of another group
member who, after recognizing the onset of a mental episode, called
the police for transportation to a hospital only to be surrounded by
guns drawn and spotlights shining in front of a crowded
restaurant.
Four of Wld's seven hospitalizations were
involuntary.
"I find them very terrifying experiences," he
said.
And while insisting that most health-care workers are
compassionate, each panelist had at least one horror story about
their experiences with unsympathetic medical staff.
On one
occasion, Potoroff brought herself to the hospital, but after
telling the admitting nurse her past eployment included being a
White House guard -- which was true -- she was deemed delusional and
involuntarily admitted against her protests.
After one of
Patti's suicide attempts from a pill-and-alcohol overdose, she awoke
in a hospital bed from a three-day coma facing a doctor ready to
berate her.
"He said I was a spoiled, middle-aged woman who
was afraid of losing her looks," she said. "And
selfish."
When panelist Alison Mills, 36, visited the
emergency room for back pain resulting from a previous surgery, the
doctor treated her with a demeanor she said is not
uncommon.
"The ER doctors see your list of medications and
they think, 'Oh my God, this one's a nut,' " said Mills, a former
school teacher. "Before they even get to you they have an idea of
what they'll be seeing."
Mils is diagnosed as being
schizo-affective with a multiple personality disorder.
With
these stories, members of the group asked that the future
health-care workers in the audience remember them when they are in
similar situations.
But the stigma of mental illness reaches
beyond the mental health system. Every front-page headline that
references mental illness along with a criminal act has a lasting
effect on them.
Mentally ill individuals, the group
emphasizes, should not be thought of as completely separate from the
larger community.
"I've never seen a person with mental
illness that doesn't have a part of them that is very, very well,"
Lee said.
The San Mateo County Times
1080 South Amphlett
Boulevard
San Mateo, CA 94402
Web: http://www.sanmateotimes-ang.com/
A SON LEARNS ABOUT PREJUDICE
Below is an insightful "classic" (reprinted from The Journal
of the California Alliance for the Mentally Ill, Volume 5, Number 2,
1994, with permission from the Publisher and Editor, Dan E.
Weisburd).
Ron Schraiber is a California activist known nationally as the
co-author of a pioneering research project to determine what factors
promote well-being among mental health clients. The study, described as
"landmark" in the Surgeon General's 1999 special report on mental
health, was conducted in 1989 with researcher Jean Campbell, Ph.D, now
the director of the Program in Consumer Studies and Training, Missouri
Institute of Mental Health. Ron is the director of the Office for
Consumer Affairs, Los Angeles County Department of Mental
Health.
THE "C" WORD
by Ron Schraiber
"I cannot fully express
how hurtful and invalidating
it can
be to have your
thoughts and feelings
dismissed as crazy,
or
the product of a
deluded mind or brain..."
I had just picked up my six-year-old son, Joshua, from his after
school care at the YMCA. As we arrived home, both of us knew it was time
for the post school/YMCA wrap-up. Daddy would inquire, ritualistically,
if not always poignantly, into the historic daily happenings of the life
of my beloved first grader.
Joshua, however, did not usually view these weekday domestic news
conferences as a time of sharing or parental interest. For him, it was a
time of unwanted inquiries, of pulling teeth for information, an
imposition on him of the stale past. To the question of, "What happened
at school today," he would regularly answer, "I don't remember."
It was Joshua's way of saying he preferred to pay his present
attention to more pressing and interesting matters, such as Power
Rangers, X-Men, drawing dinosaurs or playing video games.
Today, however, was different. Joshua responded that somene had
said the "C" word at school. Now, being a wordly sort of guy, I had
already heard of the notorious "F" word. In fact, Joshua had actually
questioned me about that one before. But the "C" word... what was
that?
"Daddy, don't you know?... the "C" word, C-R-A-Z-Y!
Of course, I know the "C" word - all too intimately and hurtfully
so. During the 1970's, I had been involuntarily hospitalized
approximately 20 times with such diagnoses as schizophrenia and
manic-depression. I knew the devastation and negation of being
called "crazy" on both a formal and informal basis. I cannot fully
express how hurtful and invalidating it can be to have your thoughts and
feelings dismissed as crazy, or the product of a deluded mind or brain,
whether it be couched in the professional jargon of mental health
vernacular or the put-down of everyday discourse.
Yes, son, Daddy knew the "C" word.
Joshua had learned his sensitivity to the "C" word from our
conversations related to treating all people with dignity and respect.
In our father and son household, he has been taught that putting people
down or making fun of them for being "crazy" is just as wrong and bad as
ridiculing or denigrating someone because of their ethnic or religious
background, or because of a person's different customs or language. In
short, no hurtful name calling or prejudice.
I guess that my talk about calling people crazy and making fun of
other people had some effect. It was Joshua, himself, who came up with
the appellation of the "C" word for crazy, thus showing that I had
somehow transmitted to him the gravity of my beliefs, that along with
the "F" word and various other epithets, "crazy" was a word bathed in
taboo and opprobrium.
To be sure, Joshua has become my living conscience. When I
mimicked an Asian language newscast on cable TV, it was Joshua who set
me straight about not making fun of other people and their language.
After all, I had told him about anti-Semitism and how our Jewish
ancestors had suffered so much because of prejudice. Ah, yes, the
sensitivity of innocence and political correctness has truly arrived in
Whittier in the form of the avenging angel called Joshua. Woe unto the
Daddy who transgresses his just gaze!
While I continue to try to imbue Joshua with lessons of liberty
and justice for all, including people commonly described as
"crazy," I have never actually told Joshua that I have been a mental
health client - and this, despite the fact that I have discussed my
psychiatric history in the print and electronic media. Part of it is,
that despite his obvious intelligence and compassion, he may still be
too young to fully integrate what it means to have a father who has the
stigmatizing identity of "ex-mental patient." It is often
difficult for parents to admit any flaws to their admiring young ones,
let alone a status that is guaranteed not to win you a welcoming party
and the most sought-after new neighbor award. The discrimination and
problematical status of being diagnosed with mental illness extends even
to our loving children... and, God knows, how they will feel and
react... and how I will react to their reaction, especially if it
entails even a small form of rejection. The time for full disclosure is
near, though, so get the reporter from Hard Copy!
When I worked at LAMP, a social service agency providing services
for people diagnosed with serious mental illness on Los Angeles' Skid
Row, I would periodically take Joshua there. I will always remember the
reaction of the clients there, how much they enjoyed seeing and playing
with Joshua. Ironically, such joyful scenes at LAMP made me angry -
angry at society that so often stereotypes and portrays people
identified as mentally ill as subhuman pariahs bent on paths of
destruction. I never told Joshua that these people were so-called
"mental patients." For Joshua these people were individuals, to be
enjoyed and appreciated based on their individual interactions with him.
He did not know them as a category, only as people. Perhaps, Joshua will
always treat people as unique individuals, and, hopefully, that will
include his dad.
Interestingly, no matter how hard I try, Joshua continues to
retain what seems a universal prejudice, at least, in America, of little
boys' dislike of "icky" little girls. Is it genetic or learned?
To think that I've been a single dad for the last few years. What
a contrast to when I lived on the streets. To most, I would have been
considered "the homeless mentally ill" (definitely a politically
incorrect term). I liked to consider myself a vagabond, an internal
refugee in America who lived by the dictum of Thoreau, "If you see
someone running after you, to help you, then run even faster."
Unfortunately, the police and the mental health system often caught up
with me, telling me that my prognosis was poor. Now, I'm a 9 to 5 type
of guy with all the responsibilities and joys of fatherhood sans
spouse. (How I got sole custody of Joshua is a story that has more
twists than "As the World Turns.") As for myself, I feel my prognosis is
good whenever Joshua smiles or says, "I love you,
Daddy."
The
term, "Positive Visibility," was first used by a group of activists
in Texas, RECLAMATION, Inc.
Say "positive visibility" to a veteran in the mental health
advocacy field, and chances are they will think of Don H. Culwell, a
Texan with a sly sense of humor, who was the founding president of the
NAMI Client Council. To the best of our knowledge, Don was the first to
use the term, "Positive Visibility," when he named a newsletter he
created many years ago for Reclamation, Inc., a small, tenacious
organization of mental illness survivors.
In 1974, eight former mental patients founded the non-profit
corporation chartered by the state of Texas called Reclamation, Inc..
For 26 years,Reclamation's primary purpose has been, in their words, to
"reclaim the human dignity destroyed by barriers and negative attitudes
toward people with disabilities." The group resolved to "accomplish
something worthwhile and visible," and turned their efforts to providing
permanent or temporary homes or shelter for people with
disabilities.
The members of Reclamation, Inc. pursue their goals and dispense
positive visibility from their office at 2502 Waterford, San Antonio, TX
78217. Tel: 210-822-3569
GROUP BUILDS ON A SHARED INTEREST IN THE
ARTS
Give Me Shelter
(GMS Arts Education)
2716
Jefferson
Midland, MI 48640
E-mail:
shelter@midglad.cog.mi.us
Director: Christine Vaughn
This "arts and human services" program in Michigan was founded in
1993 by dancer/choreographer L.J. Cavanaugh to foster a unique
collaboration between the mental health and arts communities -- a
working relationship between professional performers, people with
psychiatric disabilities, and the community at large. In the words of
the founder, "We're hoping to give a message of hope, and to talk about
abilities and not disabilities."
The project, based in a
community mental health center, has expanded over the years and now
offers classes in creative arts at several locations: the Midland Arts
Center, a community church, and the local community center. At the heart
of the program is the belief that stereotypes dissolve when people work
together in a non-judgmental, safe environment. It integrates with the
community through public performances and exhibitions, and most recently
through programs in the
schools.
This section is under construction. We welcome your
suggestions!
Contact:
National Stigma
Clearinghouse
245 8th Avenue, #213
New York, NY 10011
Tel:
212-255-4411
Email: stigmanet@webtv.net
Use "back" to return to
STIGMA HOME PAGE and Click-on Menu
|
|
|
|
| | |||||||