Advocacy, the process by which a group or an individual attempts to influence public policy and public attitudes, has shaped American psychiatry in countless ways since the nineteenth century, when Dorothea Dix lobbied Congress and many state legislative bodies to build asylums. The system of state asylums that was a direct result of her efforts served as the dominant model of mental health care for approximately a century,1 thus shaping how generations of psychiatrists practiced. Yet many psychiatrists have little knowledge about the current advocacy movement, which is likely to shape mental health care in the future. Some may feel that advocacy is primarily of concern to psychiatrists working in the public sector, but even psychiatrists in solo private practice are influenced by the work of advocacy organizations on issues such as prescribing privileges for psychologists, mental healthcare parity, the Affordable Care Act, and statutes for involuntary commitment. Researchers who consider advocacy to be irrelevant should be aware that the budget of the National Institutes of Health also demands vigilant advocacy to preserve funding for research. To familiarize psychiatrists with these powerful forces that influence countless aspects of our daily practice, this advocacy column will provide periodic updates on the landscape of the advocacy movement. Each column will cover different issues, resources, and trends that can advance our field.
The American Psychiatric Association and other professional organizations such as the American Medical Association, the American Psychological Association, and the National Association of Social Workers all engage in advocacy, and future columns will highlight some of their resources. The combined resources of such professional organizations are considerable but this initial column will focus on a different type of advocacy effort: those by individuals with serious mental illness.
The Role of Self-Narrative
Although many anti-stigma campaigns have focused on raising awareness of the biological nature of mental illnesses, an important study by Pescosolido et al. suggests that stigma (as measured by social distance) does not decrease and may, in fact, increase when the public embraces a neurobiological understanding of mental illness.2 By contrast, empirical research about public attitudes toward another stigmatized group, gay men, shows that people who have interpersonal contact with gay men are more likely to have a positive attitude toward them,3 and a broad theoretical framework has been proposed to support the use of personal narrative as an effective tool to address a range of controversial socio-scientific issues.4 Thus, a prudent strategy to decrease the stigma associated with mental illness is to expose the general public to individuals who have experienced these diseases and who can effectively convey their experiences.
The power of having individuals with serious mental illness tell their own story is not new. Clifford W. Beers published A Mind That Found Itself in 1908, which described the abuses he had suffered during his hospitalizations,5 launching the mental hygiene movement.1 In the century since then, other articulate, book-length, first-person accounts describing the experience of people with schizophrenia, bipolar disorder, and major depressive disorder have received critical acclaim and become bestsellers, giving the general public a vivid understanding of serious mental illnesses.6–9 However, since large segments of the general population will not pick up and read a full book on this subject, such books need to be complemented with other initiatives that penetrate other sectors of the public.
The National Alliance on Mental Illness (NAMI) has developed two such programs that bring the power of such first-person accounts to a larger audience. Founded in 1979 by family members of individuals with serious mental illness, NAMI has expanded to include not just family members, but also individuals who themselves have serious mental illness, as well as clinicians providing care for those individuals. NAMI has become the nation’s largest grassroots mental health organization dedicated to building better lives for the millions of Americans affected by serious mental illness and is organized into three levels: a national office, state-level organizations throughout the country, and local affiliates in over a thousand communities nationwide. NAMI advocates for access to services, treatment, supports, and research to improve the lives of those living with serious mental illness.
NAMI In Our Own Voice
In 1996, NAMI developed a unique public education program in which two trained speakers share their personal stories about living with mental illness and achieving recovery. This program, now known as NAMI In Our Own Voice, can have the dual benefit of expanding public understanding of these diseases while at the same time giving the speakers an opportunity to gain confidence and to share their individual experiences. To quote one NAMI In Our Own Voice presenter, “It sure is scary getting up in front of others, but the feeling of gratitude I feel afterwards is so worth it. Thanks to my family, my doctors and counselors, and most of all to God for bringing NAMI into my path. For the first time in my life, I have a dream. I want to work with people who have a mental illness. I even have some hope.”10 According to Lynn Borton, Chief Operating Officer of NAMI, NAMI In Our Own Voice has trained more than 8,000 presenters and has reached more than 300,000 audience members, including consumer groups, students, law enforcement officials, educators, providers, faith community members, politicians, professional groups, inmates, and interested civic groups [personal communication, 2012]. Studies of undergraduates and social workers who attended NAMI In Our Own Voice presentations support the efficacy of this program in improving the understanding of and attitude toward individuals with serious mental illness,11 and a study in adolescent girls suggests that NAMI In Our Own Voice can improve mental health literacy, although it did not reduce stigma in this age group.12 NAMI In Our Own Voice has also been successfully adapted to reduce self-stigma in family members of individuals with serious mental illness.13
NAMI In Our Own Voice is designed to be presented in a single session of either 60 or 90 minutes, far less time than required to read a book-length, first person account—but even an hour may represent an unreasonably long commitment of time in many situations in which mental health advocacy can occur. Advocacy can also occur in the form of an elevator speech, a phone call, or an email, and therefore the effective use of self-narrative also needs to be honed down to these brief formats.
NAMI Smarts for Advocacy
A new program developed by NAMI, NAMI Smarts for Advocacy, helps people with mental illness as well as friends and family members adapt their personal experiences into compelling, succinct stories that can influence others. Angela Kimball, Director of State Policy, reports that NAMI developed the Smarts program because they had heard legislators repeatedly say, “NAMI is a great cause but your members can be angry or take an hour to tell their story. That keeps their point from being heard” [personal communication, 2012]. The NAMI Smarts training is a full-day (9-hour) training consisting of three modules.
Module one, “Telling your Story” provides a foundation; module two focuses on emails and phone calls and includes the development of an “elevator speech.” An elevator speech (or elevator pitch) is a brief summary that makes a case for a specific request in approximately 30 seconds to 2 minutes (the name derives from the idea that such a pitch can be communicated in the time it takes to ride an elevator). Taking the emotional charge of a personal experience with serious mental illness and boiling it down to such a brief presentation with a specific request can permit advocates to make maximum use of casual or rushed encounters with people who they wish to influence. The third module trains participants for meeting with legislators and includes practical advice on how to contact elected officials and how to write an effective thank you note after such meetings. Recognizing that NAMI works within a larger community of organizations that also advocate for people with serious mental illness, the NAMI Smarts program encourages inclusion of other groups and non-traditional partners. Although this program is still too new for outcome research, Ms. Kimball reports that it has been “extremely gratifying hearing people share the stories they’ve crafted. I’ve seen people profoundly move their audience. It’s very empowering. We hear people say that they’ve never been able to share their story effectively and now they can do it.”
The NAMI Smarts and In Our Own Voice programs represent just two ways in which self-narratives can be used as effective advocacy tools. Celebrities “coming out” about their mental illness, further autobiographical accounts of individuals living with these illnesses, and the work of countless other advocacy organizations complement the two programs covered here. Regardless of the format, anyone who has a stake in the treatment of individuals with serious mental illness should consider the potential power of such narratives in shaping public perceptions.
Individuals interested in learning more about NAMI In Our Own Voice can contact the NAMI Education, Training and Peer Support Center at firstname.lastname@example.org and those interested in learning more about NAMI Smarts can contact Angela Kimball, NAMI Director of State Policy at email@example.com. NAMI is located at 3803 N. Fairfax Dr., Suite 100; Arlington, VA 22203 and their main telephone number is (703) 524-7600.
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