“The Simple Truth: Selling Coercion to Ann Landers” examines the cozy relationship between the pharmaceutical industry and the non-profit advocacy group National Alliance for the Mentally Ill (NAMI), an organization that has been actively pushing for expanded involuntary treatment laws for the mentally ill in the United States. Vicki Fox Wieselthier is a long time psychiatric survivor and activist working out of St. Louis, Missouri. She is the founder of MadNation, an Internet-based organization of people working together for human rights and social justice in mental health. This essay is reprinted from MadNation located at www.madnation.org.
(On February 17, 1999 syndicated columnist Ann Landers speculated that maybe it was a good idea to force people with schizophrenia to live in institutions where they would be medicated against their will. This annotated essay may explain why she was fooled into taking this position.)
Chances are there is a group of people working very hard to increase coercion and force in the mental health system in your community. They may not be making news now, but they are there, waiting for some awful act of violence that seems to involve a person believed to be mentally ill. And when the awful act of violence happens—whether it is a person pushed onto the subway tracks as happened in New York City, a bizarre attack on a politician, like the Capitol murders, or something else, they will be ready to begin their campaign of lies, distortion and fear.
The simple truth is that with about one in four of us “different enough” to be called mentally ill,i it is just a matter of time before each and every community can count on something happening that can be used as an excuse to get the ball rolling. Funded by drug company money, and fueled by a constant barrage of news stories with sensationalist headlines and content that endlessly repeats lies, exaggerations and just plain fiction about the relationship between violence and mental illness, the campaign to destroy our rights, lock us up, and forcibly drug each and every one of us is well underway.
The beginning seemed pretty straightforward. Somewhere along the line our society became more violent, our cities became hostile environments, our different-ness became medicalized into diseases, and everyone was expected to be a unit of production. At the end of the 20th century, Boo Radley (To Kill a Mockingbird) would have lived in a psychiatric hospital, a group home, or been homeless and Scout would have been told that Boo had a brain disease and was dangerous. While it’s true that in the past way too many of us lived desperately unhappy lives locked in back wards or chained like dogs to beds in our families homes, it is also true that in days gone by, many of us lived unobtrusively or found love, friendship, and contentment like everybody else.
The forces of modernity converged and we were among the victims. Our moms swallowed Valium and better living through chemistry and electricity became a way of life. The hospitals were an embarrassment that everyone was eager to close and the back bedrooms in our parents’ homes had been converted into rumpus rooms. The American dream became grounded in the belief that we were all alike and people—all people—were expected to fit neatly into the roles we saw on TV. In an era when no one wanted to take responsibility for anything at all, emotional distress became mental illness and mental illness became a life long sentence requiring first an admission of guilt and then a willingness to be compliant with any kind of treatment that was ordered. There was no place for Boo Radley or anyone else that couldn’t fit in.
The promise was that medicine would “cure” us and the government would pay for it. Both were lies. The drugs damaged our brainsii,iii, made us drool, impaired our movement, destroyed our sexuality, and made us stupid and fativ. Sometimes they kept us quiet, took away our inner voices, or regulated our moods well enough to satisfy our families or our own beaten down expectations. Some people think that everything would have been just fine if we had accepted it and quietly sat in the group homes HUD built for us, attended the day programs Medicaid was happy to pay for, and swallowed our pills.
But some of us want more—a lot more. The survivor movement was born when many of us who had been diagnosed as being incurably mentally ill somehow got better. Some of us got better with medical assistance, some of us got better without it, and still others of us got better despite it. And while many of us turned our backs on that part of our past, still others of us started to talk to each other about our common experience. We discovered that far too many of us had been victimized by the system that we had turned to for help.
We discovered that the abuse and mistreatment we received while in the psychiatric system was endemic. We discovered that no one in the system appeared to be interested in acknowledging or eliminating the rampant abuse we witnessed and suffered. We discovered that there was a systematic campaign to ignore our concerns and discount our experiences.
I say “our” concerns with some degree of reservation, because our Survivor movement was, and continues to be, far from united. While we share a belief that the mental health system abuses and harms far too many of us, far too often, that may be the only thing we have in common. There are those among us who believe that there is no such thing as mental illness, and that medical model treatment is never anything but abusive and damaging. Others of us are willing to claim a DSM IV diagnosis, and feel most comfortable talking about things like choice and the ability to access the services we find helpful and life enhancing.
While we made valiant efforts to work together, the families of people the system of care had failed also began to organize. Their concerns were different from ours. While our personal and collective experience had taught us that organized psychiatry was often harmful, they believed that access to that system would improve the lives of their children, and their own. While they believed that no price was too great to pay to reduce psychiatric symptoms, our experience told us that brightly colored pills, shock treatment, and injections often stole our personhood. But more then that, we were the ones who actually got better, and they were living with and worrying about people who were not recovering and whose lives continued to be at best, in disarray, and at worst fraught with hopelessness and danger.
Somewhere along the way we lost the ability to talk to each other about these very different perspectives. It was as if both sides came to believe that our personal experiences precluded any hope of developing a common worldview and common goals. The survivor community wanted more of what worked for us—housing, self-help/peer support programs, civil and human rights protection, and opportunities for growth and empowerment. The family movement wanted secure institutional environments, access to medical model services, and expedited and expanded involuntary treatment options. Dollars were limited, and the views of the possible collided.
We have spent an inordinate amount of time fighting with each other while the system continued to fail all of us. For awhile, the playing field was pretty much level—despite the inherent inequality of our two movements. We were, after all, mostly poor, mostly unemployed and mostly viewed by society as outsiders or marginal members of our communities. Members of family organizations were seen as normal and were often comfortably middle class. Policy decisions seemed, for awhile, pretty much even handed. The CSP program flourished, and there was a commitment by the Federal government to developing less intrusive community based services. The money set aside for research into improved drug therapies continued to grow and new medications were developed. All of this changed when the twin evils of drug company money and the professionalization of family advocacy began.
In place of a family advocacy movement concerned principally with helping families support each other and becoming educated about mental illnesses and how to assist their loved ones, suddenly there was money to pay lobbyists and to develop model legislation. Big dollars flowed through the system, with money from seven drug companiesv enabling the largest of the family organizations, the National Alliance for the Mentally Ill (NAMI), to develop a network of regional offices with paid staff devoted to helping state and local chapters develop legislation and carryout an organized political agenda.
Somewhere along the line, NAMI discovered that if you say something often enough, people will come to believe it is truevi. One of the first things they chose to say was that they represented not just the needs and concerns of family members, but ours as well. “Real consumers” (the word Survivor was anathema) were those who dutifully followed a treatment program, repented of the days when they did not do so, and were grateful for the involuntary treatment they received when they “needed” itvii.
We (Survivors that is) were something else entirely. NAMI’s E. Fuller Torrey even went so far as to blame a half million deaths on the leadership of our communityviii. While the Survivor community took up the slogan of the anti-apartheid movement “Nothing about me, without me”, NAMI leaders insisted on their right to speak for us.
And what they said was that people with mental illness were violent, that force was necessary, and that mental illness was forever. Their legislative agenda increasingly focused on changing mental health laws to reflect their beliefs. Instead of supporting the view that with access to a mix of medical and generic services people with mental illnesses could live successful lives in the community, legislators, the media, and the public were encouraged to believe that 50% of us were so seriously disturbed that we required forced treatmentix. Our great sin was denial and the cause of both the illnesses and the denial was biological. If we refused treatment, the refusal itself was taken as proof that we were seriously ill and viewed as sufficient reason to haul us into court and take away our freedom. We began to hear words like decisionally impaired. Suddenly we were seeing legislation drafted that allowed the courts to strip away our rights for having faulty perceptionsx.
It seemed to happen overnight. One moment NAMI was out there fighting stigma and the next moment they were promulgating the worst of the stereotypes about mental patients as deranged killers in waiting. Two-time NAMI Board Member DJ Jaffe called for the firing Center for Mental Health Services (CMHS) Director Bernie Arons because he included Survivors in CMHS national meetingsxi. E. Fuller Torrey became a different kind of wolf and began saying that deinstitutionalization had failed not because the services were not made available in the community, but because people with “untreated” mental illnesses were inherently violent, unpredictable, and dangerous. In testimony before the Civil Rights Commission, in late 1998xii, Torrey stated that employers who hired persons with mental illness were themselves mentally ill. Studies by responsible researchers like those associated with the MacArthur Foundation were distorted or discountedxiii when the results did not support the connection the family advocates were making between violence and mental illness. The Bellevue Studyxiv, a four year examination of the efficacy of involuntary commitment, was first distorted and later abjured when the results indicated that access to services made a difference in people’s lives, but involuntary out patient commitment did not. Laurie Flynn, NAMI’s Executive Director, had her hands in the drug companies pockets at the same time she was supposedly representing our interests as part of the National Bioethics Advisory Commission. Brian Chico owner of the drug company sponsored schizophrenia.com website developed a NBD (neurobiological disease) and violence electronic mailing list[xv] while the NAMI offshoot, the Treatment Advocacy Center developed a searchable on-line databasexvi of crimes supposedly committed by people with mental illnesses.
As 1998 drew to a close, it became clear that the family movement would exploit any incident of violence by a person thought to have a mental illness. When Michael Laudor killed his lover, the former NAMI poster child was held up to the world as an example of the consequences of abandoned treatmentxvii. NAMI developed a four-point description of their worldviewxviii that made it clear that it was in societies’ best interest to develop a system of forced treatment and coercion. With funding by the drug companies and people like Ted and Veda Stanley, NAMI and Treatment Advocacy Center (TAC) advocates began to make the rounds. A report of a violent incident anywhere in the country was almost sure to contain a quote from one of the NAMI/TAC expertsxix. In February 1999, TAC Executive Director Mary Zdanowicz called for the institution of out patient commitment legislation in Maryland after a person who had never received mental health care or been diagnosed with a mental illness committed a highly publicized murder in Baltimorexx.
It has become clear to many of us in the Survivor movement that the push to limit our rights has taken on a life of its own. Fed by lies that have come to be regarded as the truth, backed by a mini-army of pro-force zealots with funding that allows them to travel the country speaking to reporters and legislators, and embraced by communities which are powerless to make themselves safe from the other dangers in our culture, the time to demonize us is at hand. No one outside of the Survivor community is asking about the cost. No one asks about the cost in dollars and what shifting mental health dollars away from the services we want and need and into the creation of a force bureaucracy means. And certainly no one asks about the cost to us as individuals and the cost to a society that will lose our talents and skills.
The simple truth is that I would not be here today had I not had comprehensive, community based, voluntary mental health treatment in the 1980s. I would also not be here today if the system of life long force and coercion that is currently being constructed had been in place back then. I would not have survived, and I am a Survivor.
[i] Kessler, Ronald et al. “Lifetime and 12-Month Prevalence of DSM-III-R Psychiatric Disorders in the United States,” Archives of General Psychiatry, vol. 51, January 1994.
[ii] Science News, 12/19/98-12/26/98, Vol. 154 Issue 25/26, p397
[iii] Gur RE, Maany V, Mozley PD, Swanson C, Bilker W, Gur RC Subcortical MRI volumes in neuroleptic-naive and treated patients with schizophrenia Am J Psychiatry 1998 Dec;155(12):1711-7 On line at: http://ajp.psychiatryonline.org/cgi/content/full/155/12/1711#F1
[iv] On-line See: http://www.cmhc.com/guide/pro22.htm. To search by drug name: http://www.rxlist.com/. Also see the PDR (Physician’s Desk Reference).
[v] Sponsorship of NAMI Campaign to End Discrimination: http://www.nami.org/campaign/index.htm link between NAMI, the Campaign to End Discrimination, and drug sponsorship of PACT (Programs in Assertive Community treatment) http://www.actassociation.com/About/Sponsors/sponsors.htm
NAMI Anti Stigma Foundation IRS Information 1996 http://nonprofit.guidestar.org/search/report.cfm?ein=54%2D179562 5&rid=39
Ely Lilly also has staff on loan to NAMI. Jerry Radke “NAMI Consultant” jerry@nami.org (703) 316-7996
[vi] The biggest lie is most definitely the Torrey fiction that 1000 murders a year are committed by people with “untreated” mental illnesses. His first explanation of where he got that number is in a letter to Brian Chico of schizophrenia.com. See: http://www.schizophrenia.com/ami/Tempfiles/1297news.html In testimony before the Civil Rights Commission he credits a DOJ Study which does not collect data that addresses that question in any credible way. See: http://www.madnation.org/text/beyondbelief.htm for an examination of this particular lie.
[vii] Two People’s Experiences with Schizophrenia and Involuntary Treatment with an introduction by Brain Chico http://www.schizophrenia.com/newsletter/397/397invltrtmt.html
[viii] E. FULLER TORREY, M.D.Taking Issue PSYCHIATRIC SERVICES Feb. 1997 - On line at: http://www.schizophrenia.com/newsletter/297/297survive.html
[ix] Leibovitch, Lori Interview with Fuller Torrey “Madness in the Streets” in Salon Magazine Feb. 1997. http://www.schizophrenia.com/ami/Torrey/Deinst.html
[x] The Minnesota Law (253B.064) http://www.madnation.org/text/mnlaw.htm
[xi] http://www.schizophrenia.com/ami/Tempfiles/1297news.html January 1998, January 1998 NBD UPDATES Part 1. This article attacking Bernie Arons also contains Jaffe’s explanation of the difference between consumers and survivors.
[xii] Transcript of his testimony is on MadNation at: http://www.madnation.org/text/TorreyADA.htm
[xiii] MadNation has reported on this all along. See: http://www.madnation.org/news/archive1.htm
[xiv] The Bellevue Summary http://www.madnation.org/text/bellevue.htm TAC Spin: http://www.madnation.org/text/bellevuetac.htm
[xv] List announcement: Recent Violence and Schizophrenia/Neurobiological Brain Disorders http://www.schizophrenia.com/family/viol.html Chico transmitted 65 incidents in his January 1999 NBD and Violence newsletters. Examples are on the web page cited above.
[xvi] You can find it at: http://www.psychlaws.org/ep.asp
[xvii] Two versions of a NAMI press release appeared when this terrible event occurred. The one on the NAMI web site is rather innocuous. See: http://www.nami.org/pressroom/19980619.html. The exploitation was clear though in interviews given by Laurie Flynn that same day: http://sddt.com/files/librarywire/98/06/19/1k.html.
[xviii] Each time there is a tragedy to exploit NAMI responds by repeating their four point plan of increased coercion and force by way of the NAMI ENEWS. See the January 7, 1999 edition. Exploiting the subway murder in NY City. In the August 6, 1998 edition they published it in response to the Capitol murders.
The Plan:
“Unfortunately, a recent national study has documented that fewer than 50 percent of individuals who struggle with schizophrenia receive the care that science has proven to work. The experience of NAMI families—who often have had to fight to get loved ones the kind of treatment they need—has taught us that four critical elements must be in place to help those with the illness:
1. community-based care including ongoing medical treatment, housing, rehabilitation and other supports for those who are able to recognize the need for care and manage their own illness.
2. assertive community treatment programs that provide 24-hour-a-day outreach and crisis support for those who are less able to maintain their treatment requirements.
3. outpatient treatment orders that require participation in treatment as a condition for living in the community for those who do not respond to outreach and resist treatment.
4. involuntary inpatient commitment that provides short-term hospitalization to treat and stabilize acute psychiatric symptoms for those who are unable to recognize the need for treatment due to the symptoms of their illness.” One of the more interesting things to note when reading the ENEWS and press releases is the escalation in NAMI’s membership numbers. February 17, 1999 release states 203,000 members up from 185,000 reported in September. Not surprising if former Missouri State Chapter MOCAMI’s reporting technique is used. They multiply each paid member by 3 when reporting their membership numbers to the National (personal conversation with K.Hill, former MOCAMI Board Member) If you make a donation, you are considered a paid member in St. Louis.
[xix] Torrey ran to Sacramento in February 1999 to repeat his violence routine as the state looked at increasing coercion and force there: http://www.latimes.com/sbin/iawrapper?NS-search-set=/36cac/aaaa003Tgcac145& NS-docoffset=3&NS-adv-search=0&
[xx] Baltimore Sun on line article: http://www.sunspot.net/cgi-bin/editorial/story.cgi?section=archive&storyid=1050000211247
Reprinted with permission
Copyright 1999 by Vicki Fox Wieselthier
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