The Importance of Disclosure
Until the mid-1980s, I was unaware of the activities of these advocacy groups, but in 1987, I attended a talk in given in Akron, Ohio, by Carol North, MD. The young Dr. North was a resident in psychiatry in St. Louis who was on a book tour associated with an autobiography she had just written about her life as a person growing up with schizophrenia.16 To say the least, I was astounded by her presentation.
After the talk’s conclusion, I waited for the small crowd of persons interacting with her to dissipate. I shared with her that I thought she was exceedingly courageous in being so revealing about her tribulations with schizophrenia. I then confided in her that I also had been diagnosed with this disorder, but indicated that I could never muster the courage to stand up before a group of strangers and reveal that I was living with schizophrenia. She looked me directly in the eye and said, “Yes you can!”
I was stunned by Carol North’s apparently casual remark. Nevertheless, within a few months I, too, had delivered a similar, self-revelatory presentation7 and quickly found I was being invited to various gatherings, mostly at universities or to meetings of advocacy groups, where I openly discussed details about my psychiatric history. Fairly quickly, I also found myself being increasingly involved in the activities of the advocacy groups. I began attending the Alternatives convention virtually every year for more than a decade and intermittently thereafter. In 1992, I found myself being elected the national president of what was then the country’s largest consumer advocacy group, the National Mental Health Consumers’ Association (NMHCA). After that biennial term expired, I was elected to the national Board of Directors of NAMI. I eventually served for a total of four terms (12 years) in that capacity.
Early during my advocacy activities, Kay Redfield Jamison,17 a professor of psychiatry at Johns Hopkins Medical School, published Touched with Fire, which conjectures that, of persons who are subject to psychosis, those with bipolar illness are far more likely to be creative than those of us with schizophrenia. Naturally, I had difficulty accepting this view. A couple of years later, Dr. Jamison published another book18 in which she disclosed that she was also a person living with a serious mental disorder, specifically, manic depressive illness. With that revelation, I found that I became much more receptive to Dr. Jamison’s views, in general, but still resisted her thoughts regarding the limited abilities of those of us with schizophrenia.
Another doctoral-level mental health professional who began to be open about his condition about this time was Daniel Fisher. I first met Dan at an early Alternatives convention. I found him particularly interesting, not only because he was a Harvard trained MD, PhD, board-certified psychiatrist who had been diagnosed with paranoid schizophrenia, but also because he just happened to have been on the same psychiatric ward in Bethesda that I had been on in the 1960s. Although his stay at the Bethesda Naval Hospital occurred about 3 years after mine, I was struck by the fact that we had both spent some 4-5 months in the same location under the care of the same psychiatric system and now found ourselves beginning to lend our voices to the growing mental health advocacy movement.
Dr. Fisher went on to be appointed as the only “consumer/survivor” on the President’s New Freedom Commission (NFC) on Mental Health.19 The final report of that commission called for a transformation of the entire mental health system. The seminal aspect of the report of the NFC was the shift of focus in mental health services from “caring for” patients to enhancing the “recovery of” persons with serious mental illness. This concept of recovery has gained significant traction since the publication of the NFC report (Frese, Knight, & Saks, 2009).10
About the same time that the federal government was adopting recovery as the hallmark goal of the mental health system, the powers that be in psychiatry were ushering in a new paradigm under the rubric evidence-based practice (EBP). To some of those in the developing advocacy movement, recovery and EBP seemed to be opposing approaches. After all, evidence concerning the efficacy of psychiatric treatment was determined by research, not by the persons who were the recipients of psychiatric services. The “evidence” of EBP approaches to treatment was based on scientific, objective, detached research. But the principles of the recovery movement gave priority to nonscientific, indeed subjective, considerations such as self-direction, empowerment, and hope.
In the early ‘90s, a group of us doctoral level persons who had periodically experienced psychotic breaks published an article that attempted to resolve this apparent dialectic. Frese, Stanley, Kress, and Vogel-Scibilia20 produced an article that attempted to reconcile the clashing concepts of the importance of EBPs and the recovery movement. We stressed that all psychotic conditions are not equally disabling, citing emerging literature that emphasized that these disorders are more dimensional than categorical. We pointed out that those with the most severe psychotic symptoms cannot be expected to make rational decisions. Too frequently, they are abandoned to the streets or placed in jails and prisons due to the lack of availability of appropriate care. We argued that EBPs are maximally beneficial for these individuals and should be afforded them, even when those receiving services cannot appreciate that these practices may be of benefit. We further argued that once these individuals begin to respond to treatment, the principles of recovery can increasingly be applied. Indeed, unless persons in psychotic states are extremely disabled, the principles of the recovery movement can be employed from the start of treatment.
This article attempting to reconcile the EBP and recovery approaches to treatment received significant attention, having been cited more than 120 times in the professional literature, but not all persons in recovery agreed with the thoughts expressed in Frese et al. 20,21 Nevertheless, despite this public airing of differences among various groups of consumer advocates, it was gratifying to see that the views of so many doctoral level professionals with lived experience had been showcased in a peer-reviewed professional journal.
Some time after the publication of these articles in Psychiatric Services, I began to realize that highlighting the writings of those professionals who had publicly revealed their experiences with serious mental illness might be an effective way to fight the stigma of serious mental illness.
In 2008, I had another opportunity to bring attention to the views and activities of recovering professionals. I was invited to write an article on “educated consumers” views on the measurement of recovery of persons with schizophrenia. I took this opportunity not only to present an overview of the development of the recovery movement, but also to highlight the writings of some 10
psychiatrists, psychologists, and other doctoral-level mental health professionals who had been in treatment for schizophrenia. I managed to recruit two of these professionals to co-author the article with me, and together we gave brief overviews of the perspectives of 10 professionals concerning their recoveries. The psychiatrists identified in the article were Carol North,16 Daniel Fisher,21 and Beth Baxter.22 The psychologists were Ron Bassman,23 Al Siebert,24 Pat Deegan,25 and myself. My co-authors were Ed Knight,26 and Elyn Saks.27 They and the New Zealand schizophrenia researcher Robert Miller28 all had doctorates and were active in mental health advocacy but were not credentialed, per se, as psychiatrists or psychologists. Ed Knight is a sociologist, Robert Miller’s doctorate is in neurochemistry, and Elyn Saks has a JD and recently has been awarded a PhD in psychoanalysis.
As we attempted to characterize a collective view on recovery from these 10 professionals with lived experience, a problem emerged. There was considerable discordance among the views of the 10 about most issues surrounding recovery. Some stressed the importance of taking medication, others argued that medications were not important. Some stressed the necessity for family support, others saw family involvement as problematic. However, there was one issue on which all 10 of us agreed. We all stressed how difficult it had been for us to overcome the stigma and discrimination we faced, particularly from our fellow mental health professionals.
Recent opinions are emerging suggesting that the act of becoming public about one’s experience with mental illness may be a most effective way to fight the stigma. Indeed, Howard Goldman,29 the editor of Psychiatric Services, recently stated that, “Research tells us that the most powerful force in reducing prejudice and discrimination is exposure to individuals who are in recovery from a mental disorder or who admit to having been in some form of behavioral health treatment” (p. 183). The consumer advocate Nev Jones30 and the stigma researcher Patrick Corrigan31 have articulated similar views.
In addition to those professionals diagnosed with schizophrenia mentioned in Frese et al.,10 there has been a large number of additional mental health professionals with doctoral-level training and personal experience with serious mental illness who have become open about their experiences with various forms of serious mental illnesses.
The psychologists Martha Linehan,32 Peter Chadwick,33 David Lukoff,34 Carolyn Dobbins,35 Tamara Navarro,36 Rufus May,37 and Jennifer Boyd are among those who have publicly revealed their psychiatric histories. Indeed, Dr. Boyd38 has recently put together a national communication network for professionals with psychiatric disabilities who are employed by the Veterans Healthcare Administration.
Other such professionals who have become open in this regard include psychiatrists Nathaniel Lehrman39 and Howard Goldman29; pediatrician Mark Vonnegut40; occupational therapist Margaret Swarbrick41; university professors Frances Likis42 and Risdon Slate43; and psychiatric researchers, Amy Watson,44 Jean Campbell,45 Jan Wallcraft,46 and Diane S. Rose.47 Additional persons who are being open about their psychiatric conditions have more recently earned doctoral degrees. These include Eleanor Longden,48 who has delivered a highly impactful TED talk, as well as Nev Jones and Laysha Ostrow,49 co-directors of the Lernetwork, a national advocacy group for graduate students with mental illness.
Of course, in addition to these academically accomplished individuals, there have been hundreds, if not thousands, of other brave individuals who have publicly disclosed that they are in recovery from serious mental illnesses. Each of these courageous persons also contributes substantively to the fight against stigma in becoming open about their personal experiences.
In structuring this overview, I have nevertheless limited it primarily to a discussion of advocates with doctoral-level training for three primary reasons:
- 1. The pool of all those individuals in recovery who have written about their experiences is far too large to be addressed in this brief synopsis.
- 2. As mentioned earlier, many of those of us in recovery feel there is significant discrimination on the part of mental health professionals. The doctoral-level individuals mentioned herein are likely to publish in professional publications, hopefully chipping away at the seemingly intractable mindsets of some of our professional colleagues.
- 3. Persons subject to serious mental illnesses, especially schizophrenia, are considered by some mental health professionals as not having the cognitive abilities to earn doctorates in any field (e.g., Hu, 2005).50 Highlighting the accomplishments of those mentioned in this review may hopefully help alter this too widely held perspective.