“The word is out!” That was Dr. Keris Myrick’s reaction when she was elected earlier this month as the new president of NAMI’s Board of Directors (personal communication). “Wow!” The reaction of many of us when we heard the news. For those of us who know Dr. Myrick, it seemed an inspired choice. For those of us that have known NAMI for many years, some of us since its founding in 1979, we wondered whether the selection of a peer/survivor as its Board president signaled a sea-change for the organization or whether it was a political move designed to restore some of its lost credibility. Perhaps, of course, it’s both.
I met Dr. Myrick little more than a year ago when she sent me an e-mail requesting information about a training program I had developed. She was particularly interested in one of the training modules, “How To Communicate with Your M.D.” So I sent her a Powerpoint copy, which she put to immediate use, travelling up and down California and presenting at various conferences. I was impressed with her commitment to the task and her sense of mission. She’s one of the few people I know who immediately understood the importance of utilizing the Metabolic Syndrome Monitoring Protocol as a first step in addressing the adverse effects of neuroleptic medications, which is the prime message of the module.
We communicated back and forth via e-mail and occasional ‘phone calls; actually, we’ve never met face-to-face, although we’ve promised one another to do so.
I learned Dr. Myrick’s backstory when Ben Carey’s article about her appeared in The New York Times in October, 2011. Two months later, after I found out she was the 1st V.P. on NAMI’s Board, I asked her if she would be willing to ask the Board to endorse the petition then circulating to have the American Psychiatric Association delay publication of the DSM5. We both knew it was a longshot — NAMI had a long-term connection to the APA, was still wedded to the biomedical model and had only begun to address its financial entanglements with Big Pharma. Indicative of the leadership I’m confident she’ll bring to NAMI, Dr. Myrick pressed on and raised an issue that had to have challenged the culture of NAMI’s Board, indeed of the entire organization. And while the Board did not sign the American Psychological Association’s petition, it did bolster its original statement re the DSM by including language acknowledging the metabolic risk presented by psychoactive medications. In sum, it seems Dr. Myrick was able to bring to the table issues that the Board rarely discussed; and she also managed to wangle an invitation for Bob Whitaker to speak at NAMI’s next annual convention.
This is the way I imagine change will come to NAMI – slow, steady and hard to achieve.
I began my own involvement with NAMI in the mid-1980’s with our local Brooklyn chapter, A.P.R.I.L. – the Association of Persons for Rehabilitation & Independent Living. (For those of you who might not know, NAMI, in addition to its national office in Washington, D.C., has chapters in every state and over 1100 local affiliates.) This was at the time I was compiling psychoeducational family therapy data for my doctoral dissertation and investigating local family support groups for the families we were working with. I attended APRIL’s monthly meetings, did some presentations re psychoeducation and got to know the group’s leadership and its members. Its president was Sunny Brodsky, a lovely caring woman who, similarly to her members, was an elderly person with an aging child long ago diagnosed with a serious mental illness. I was struck by APRIL’s members’ determination to help their marginalized children and the burden they had been made to bear by a public mental health system that denied them and their children the resources they needed and by mental health professionals who maligned and blamed them. These were folks desperate for validation, for help, for answers. Not surprisingly, they looked to individuals who seemed to offer solutions, first and foremost, E. Fuller Torrey, a psychiatrist , whose Surviving Schizophrenia: A Manual for Families, Consumers and Providers, provided a blueprint for treatment and advocacy for NAMI and its members that was followed for years. He posited – and NAMI members latched onto – the notions that mental illnesses are neurobiological in origin; anti-psychotic medications are the treatment of choice; and treatment must be compulsory for mentally ill persons since they can be dangerous without it. Fuller Torrey did provide answers, but he earned for NAMI the enmity of peer/survivors and their advocates which has lasted into the present.
In the ensuing years, I had several other opportunities to collaborate with NAMI on the state and local levels and with individual members. The first was occasioned when New York State instituted its Intensive Case Management Program in 1988. This was shortly before the first atypical neuroleptics were introduced and just as the State began a decade-long expansion of community-based services. It was also twenty years before the extent of NAMI’s involvement with Big Pharma was brought to light by the advocates and journalists who pay attention to these matters. I happened to be Director of Training for the downstate half of the ICM program, and I promptly enlisted several members of NAMI’s State Board to lead the training module we had included to address the issue of family involvement in case management, a role they fulfilled for the nearly ten years I was connected to the training program.
The second occurred when I left as full-time training director in 1993 to assume responsibility for developing an ICM program for individuals that were encountering great difficulty accessing treatment services in New York City , principally so-called “forensic “clients, or those persons released from State correctional facilities with serious mental illness diagnoses. The concern for forensic clients soon spread city-wide with the initiation in 1999 of the infamous “Brad H.” lawsuit by the Urban Justice Center on behalf of presumably mentally ill inmates released from Rikers Island jail in the middle of the night with two subway tokens and no treatment referrals. NAMI members, particularly those affiliated with the NYC Metro chapter in Manhattan, the largest NAMI chapter in the State, were very much involved in this struggle, knowing their children were always at risk for arrest and mistreatment by the NYPD. These were, after all, the Giuliani years. Many chapter leaders were regular participants in the monthly training and information workshops I conducted over a three-year long period to address the concerns and apprehensions of treating professionals. They were among the last of NAMI New York’s founders and , I assume, among the last not yet touched by the corruption slowly enveloping the organization on the State and national levels.
My most recent opportunity came in Spring, 2009, after the client and case manager participants and I had completed the demonstration phase of the training program I referenced at the outset of this article, the Integrated Collaborative Care Management Program. A summary of the demo’s outcomes had been published on-line in Fall, 2008, generating some interest. I received a tentative invitation from the Director of NAMI’s NYC Metro chapter asking me to present an overview of the program, which sought to promote primary health care self-advocacy on the part of our case management clients. I never received a follow-up call confirming a date for the presentation, so I assumed that my Introduction, which contained summaries of the CATIE (2005) and the NASMHPD (2006) studies outlining the potentially devastating effects of the atypical neuroleptics on those prescribed them, had been deemed too threatening for NYC Metro’s members. I didn’t know that at that very moment Senator Chuck Grassley was lambasting NAMI as a “front” for Big Pharma in Congressional hearings he was holding in Washington. As proof, he produced NAMI financial reports indicating that, since its founding, NAMI had received, on average, 50% of its annual budget from pharmaceutical companies; further, that the figure had risen to 75% in the three years preceding his hearings, i.e., from 2006-8.
An old UCLA classmate of mine, Mickey Weinberg, recently reminded me that MindFreedom International, the Oregon-based advocacy organization, has been keeping tabs on NAMI since 2003, when he as lead organizer and David Oaks, MFI’s executive director , led a group of activists on a 21-day long hunger strike to underscore their demand that the U.S. Surgeon General, the American Psychiatric Association and NAMI provide “valid scientific evidence…” of the biological origins of serious mental illnesses. When the strike, formally called the “Fast for Freedom in Mental Health”, concluded in September of that year, meetings were held between the strikers and representatives of NAMI and the APA which proved mutually unsatisfactory – the proof demanded wasn’t provided and the strikers’ “opponents” (Mickey’s term) maintained their public stances if not their equanimity. As Mickey concluded, “… We’re still waiting … The challenge will not go away …” (personal communication). In the interim, MFI has tracked the number of times the term “biologically-based” appeared in pronouncements on NAMI’s website as a readout of its continued commitment to the biological model. As per MFI’s chart, “biologically-based” made 195 appearances in 2009, the year of the Grassley hearings, and dropped to 136 the year after. The wait continues.
In my estimation, this is the key challenge Dr. Myrick will be facing … to move NAMI off the biological dime and get her Board, the general membership as well as the organization’s staff to consider environmental stressors – trauma, racism, poverty – as the source of most folks’ emotional distress. My own experience working with families and NAMI members is that they reflexively fear being blamed for their children’s presumed illnesses, and reliance on environmental explanations, particularly as regards trauma, might re-open a conversation that I’m sure most hope is over. Hence the attraction of the biomedical model. All the loose ends seem to have been connected – the existence of mental illness, its cause and essential treatment and the shibboleths of wellness, rehabilitation and recovery. To challenge the biomedical model is to begin to untie those knots, to raise members’ anxiety and to invite resistance that can be expected to be fierce. I will not presume here to suggest to Dr. Myrick how she should begin to question ideas which currently comprise NAMI’s fundamental belief system. I believe that Dr. Myrick has no illusions about the difficulties she will be obliged to confront; I also believe that she knows, as I wrote above, that change will come slowly, will require a steady hand and will be hard to achieve. As she wrote in a recent personal communication, she will require support and luck. Keris, you have mine and, I’m sure, that of your fellow bloggers and our readers. As for luck, Branch Rickey, the old Brooklyn Dodger G.M., once described it as the residue of design; by which he meant you make your own. Or, as my old friend, Joe Hill, would remind you, “Don’t mourn, organize!
Carey, B., “A High-Profile Executive Job as Defense Against Mental Ills,” The New York Times, October 22, 2011
Carney, J.A., “Access to Care: Training Consumers & Case Managers,” www.miwatch.com, Fall, 2008
, “Ask Questions … Get Answers: The Integrated Collaborative Care Management Protocol & Training Program — Final Outcomes,” powerpoint presentation, September, 2010
National Institute of Mental Health, University of North Carolina, “The CATIE Studies: Clinical Antipsychotic Trials of Intervention Effectiveness, Phase I,” www.nimh.nih.org, www.catie.unc.edu, 2005
Fuller Torrey, E., Surviving Schizophrenia: A Manual for Families, Consumers & Providers, 4th ed., Harper Collins, New York, 2001 (1st ed., 1983)
Gaouette, N., “Grassley Probes Financing of Advocay Group for Mental Health,” Bloomberg News, www.bloomberg.com, April 5, 2009
Harris, G., “Drug Makers Are Advocacy Group’s Biggest Donors,” The New York Times, October 21, 2009
,“NAMI Board Member Resigns in Protest Over Drug Money,” The New York Times, December 8, 2009
MindFreedom International, “The Many Faces of Big Pharma’s Disease Mongering,” www.mindfreedom.org, 2009
National Association of State Mental Health Program Directors, “Morbidity & Mortality in People with Serious Mental Illness,” http://www.nasmhpd.org, 2006
Parish, J.J., “N.Y. City’s Brad H. Settlement, www.miwatch.org, April 30, 2007
YouTube, “Big Pharma Front Groups, NAMI?”, www.youtube.com, May 18, 2009