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.
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.
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 firstname.lastname@example.org. 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?)
December 9, 2001 - News of the Week
"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, email@example.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
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: firstname.lastname@example.org 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.
May 13, 2001.
AN IMPRESSIVE SIGN OF PROGRESS APPEARS IN THE NEW YORK TIMES
Joseph Rogers, a longtime leader of the consumer/survivor movement of people diagnosed with mental illnesses, recently was included in an article in the New York Times Sunday Magazine, the May 6 issue.
The thought-provoking article, "A Cure for Poverty" by Andrew Solomon, raised questions about the effects of depressive illnesses upon poverty, and poverty upon depression. Most interesting from an activist's point of view, however, was the matter-of-fact inclusion of Joseph Rogers among the cast of policy experts interviewed.
While his work and views have been reported in the news too many times to count, this contribution to the pages of The New York TImes Magazine places Joseph Rogers alongside experts whose opinions are typically sought, and it affirms his equal (if not higher) credibility on mental health issues.
Surely this is a marker of the real progress made by consumers/survivors with mental illnesses who are, after all, the authentic voices of the mental health community.
Below is the New York Times article (copyright New York Times 2001):
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
more information, visit the Stamp Out Stigma web site: click http://www.stampoutstigma.org/
by Martha McPartlin
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
KENNETH M. STEELE, JR., AN ACTIVIST FOR CHANGE AND AN EMBODIMENT OF HOPE
The mental health community is suffering from shock and deep sadness at the loss of Ken Steele, activist and advocate, who died while asleep on the night of October 6.
Ken Steele's obituary (below) in the New York Times, tracing his progress to success in coping with schizophrenia, is an advocacy tool in its own right. It was written by Erica Goode, who one year ago reported on Ken Steele's national voter registration project to achieve political visibility ("Gentle Drive to Make Voters of Those With Mental Illness," NY Times, October 12, 1999).
October 12, 2000
(Unable to display photo)
Kenneth M. Steele Jr., 51,
Advocate for the Mentally Ill
By Erica Goode
He called it his "cross-country schizophrenic odyssey," 32 years spent in state hospital wards, homeless shelters and halfway houses from New York to San Francisco, the passage of time obscured in a haze of psychosis, and the sedation brought on by the powerful drugs once used to treat it.
But when Kenneth M. Steele Jr., 51, died on Saturday while asleep at his small subsidized apartment in Manhattan, that life was far behind him. In his last six years, Mr. Steele had become a nationally recognized advocate for the mentally ill, who devoted his efforts to involving people with schizophrenia and manic depression in the political process.
The story of his illness and subsequent recovery was a frequent theme of his talks and writing, and it was often credited as an inspiration to others with mental illness.
The cause of death was heart failure, according to family members.
Mr. Steele was best known as the founder and publisher of New York City Voices, a newspaper focusing on mental health issues, and as the creator of the Mental Health Voter Empowerment Project, a national effort to register the mentally ill, who are often ignored by politicians.
Growing up in Waterbury, Conn., Kenneth Myron Steele, Jr. was a Boy Scout and a straight-A student who loved books and basketball. But when he was 14, voices began taunting him from the television set and the radio.
As a teenager, he left home, bouncing from city to city and from hospital to hospital in a whirl of seclusion rooms, gurneys where he was strapped into restraints and suicide watches.
His eventual recovery, he said, came as a result of his work with Dr. Rita Seiden, executive director of the Park Slope center and his therapist since 1991, and the benefits of a new generation of antipsychotic medications that quieted the voices but had fewer side effects than older drugs.
Plunging into mental health advocacy, Mr. Steele worked with an intensity that often caused friends to urge him to slow down. He organized an annual Picnic for Parity, registered 28,000 voters for the 1996 presidential election, met regularly with city and state officials and carried on a voluminous e-mail correspondence.
But Mr. Steele also took pleasure in the simpler rewards of his new-found stability: "I have a home today," he said last year. "I never had a home in my life. I feel like a teenager growing up. I have this incredible appetite to do as much as I can and to grow up as much as I can."
His apartment was a meeting place for friends, collaborators on a mutitude of projects and those who in crisis turned to him for help. Yet he also lived with the physical consequences of his long illness and its various treatments: he had high blood pressure, diabetes, sleep apnea and emphysema and was vastly overweight.
Just before his death, he completed the manuscript for a book about his life, "The Day the Voices Stopped: A Schizophrenic's Journey From Madness to Hope," written with Claire Berman. It is scheduled to be published in May by Basic Books.
Mr. Steele was often called upon to talk to psychiatrists, medical students and psychiatry residents about issues from ethics to the experience of being schizophrenic.
By talking about his life, said Dr. Stephen M. Goldfinger, vice chairman of psychiatry at the State University of New York Downstate Medical Center in Brooklyn, Mr. Steele often "taught seasoned psychiatrists to rethink their notions about psychosis and recovery."
But Mr. Steele also affected people in more private ways, as mentor, coach and surrogate parent for many young people struggling with schizophrenia or manic depression. A support network, Awakenings, which he started, offered a forum for people to talk freely about their illnesses and to offer one another help and encouragement.
Mr. Steele was vice chairman for government affairs of the Mental Health Association in New York State and was a member of the institutional review board for the New York State Psychiatric Institute, which reviews the ethics of psychiatric research studies.
He is survived by his parents, Kenneth Myron Steele, Sr., and Sarah Louise Steel of Prospect, Conn., and by his brother, Joseph Robert Steele, also of Prospect.
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
Give Me Shelter
(GMS Arts Education)
Midland, MI 48640
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.
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