Journal of Health Politics, Policy and Law
Active Voice
Advocating Self-Advocacy: Board Membership in a Statewide Mental Health Consumer Organization Sandra J. Tanenbaum Ohio State University
Abstract Until 2008 Ohio Advocates for Mental Health was a statewide mental health advocacy organization run by mental health consumers and supportive of consumer-run organizations around the state. The author’s tenure on the board entailed repeated engagement with questions of identity—self-identity, peer support through personal identification, and negotiation of public identities with provider groups and the state agency. These are fundamental to defining and legitimating the claims of mentally ill people not just for health care resources but for full participation as citizens in the public sphere.
Ohio Advocates for Mental Health
My tenure on the board of a statewide mental health consumer organization involved a continuous and reflexive practice of identity politics. I was a mental health policy scholar and a consumer of mental health services. The organization I joined, Ohio Advocates for Mental Health, represented the interests not only of mentally ill people but of local, consumer-run service organizations across the state. These organizations in turn advocated for their members and provided ‘‘self-advocacy’’ training for them. At the heart of this activity were the tenets of the mental health consumer movement (later recast as the ‘‘recovery’’ movement), which like other disability rights movements insists on ‘‘nothing about us without us.’’ Ohio Advocates was not the state chapter of the better known National Alliance for Mental Illness (NAMI); we considered NAMI too beholden to family and professional interests. Ohio Advocates was all about consumers. Journal of Health Politics, Policy and Law, Vol. 39, No. 4, August 2014 DOI 10.1215/03616878-2744423 Ó 2014 by Duke University Press
Published by Duke University Press
Journal of Health Politics, Policy and Law
920
Journal of Health Politics, Policy and Law
I came to Ohio Advocates inadvertently. I was writing a proposal for research funding from the Ohio Department of Mental Health and sought entre´e into consumer groups where I might find focus group participants. I had only sketchy knowledge of Ohio Advocates, but I was sympathetic to its mission, having struggled for many years with mental illness and the disenfranchisement it entails. The CEO of Ohio Advocates turned out to be extremely helpful and directed me not only to potential research subjects but to his organization’s website. There I filled out what I thought was a membership application but was in fact a bid to join the organization’s board. Sometime later, Ohio Advocates notified me that I had been appointed to one of two ‘‘professional’’ seats on the board. I would learn that for the most part, the people in these seats were professionals who were also consumers. The same was true of the organization’s staff. The lunatics definitely ran this asylum, and in that sense, even ordinary organizational tasks amounted to political activism. I joined the board’s policy committee and came to appreciate Ohio Advocate’s political presence in the state and at the State House. Huddling over Styrofoam cups of passable coffee, the committee would consider requests, from legislators and bureaucrats, for positions on various policy proposals. These included, during my tenure, outpatient commitment, mental health system reorganization, and the indefinite incarceration of sexual predators in state mental hospitals. State-elected officials as well as the cabinet-level director of the Ohio Department of Mental Health regularly appeared at our annual conference—a gathering of hundreds of experienced and occasionally raucous mental health advocates. (One year, an excited psychiatric service dog bit someone.) I attributed this regard to the performance of the Ohio Advocates staff. The CEO was a longtime, knowledgeable, and charismatic mental health activist who lobbied hard and well. Two other staffers, a licensed social worker and attorney respectively, demonstrated to policy makers and the press that mental health consumers could be highly skilled and perfectly reasonable. Of course, Ohio Advocates was not always welcome in the policy community— we were dismissed most notably by the association of mental health provider agencies — but even our detractors acquiesced to the inevitable presence of consumer interests around any table set by the public mental health system. Ohio Advocates’ funding came mostly from state and federal grants to support technical assistance to local peer-support and consumer-run service organizations. Staff members provided training and training-fortrainers, financial and management consulting, and informal help with
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
-
Active Voice
921
operational and political problems that arose. Peer support was foundational to all the organizations in the Ohio Advocates’ network, but we considered ‘‘consumer-run’’ organizations, which were independent, nonprofit organizations with majority consumer boards, the more advanced expression of mental health recovery. ‘‘Peer-support’’ groups operated under the auspices and control of mental health provider agencies and other nonconsumer entities. Consumer-run organizations, in contrast, were independent 501(c)(3) organizations run by mentally ill people themselves. These organizations were loci of citizenship for people whose participation even in their own care was hobbled by illness, social class, and stigma. Ohio Advocates helped peer organizations to succeed as such and also to evolve toward greater organizational independence. Membership on the Ohio Advocates board ushered me into the company of advocates not only for better health care but for better lives—selfdetermining lives — for themselves and others like them. I was initially uncertain of how I fit in. I sat in a ‘‘professional’’ seat but also in a world of hurt. I shared illness experiences with other board members, but because I managed to hold onto my job, I did not share their poverty. I know, because they told me, that some expected me to be snooty but found that I was not; the black humor of commiserating mental patients leveled social hierarchies and stirred up a glue of comradeship in a world that seems to have lost its mind. Board members had considerable respect for the expertise born of suffering and surviving mental illness. Most of us were reluctant to discount the remarks of a member struggling to make sense; there was plenty of time to get your point across and plenty of interest in what you said. Reflecting on the term consumer, we guessed it was better than patient, but the image of a prosperous buyer choosing among high-quality goods flew in the face of our experiences with mental health services. Some mental health activists use the term survivor to identify themselves, although unlike survivors of cancer, these activists are understood to have survived the treatment rather than the disease. Identity Politics in Mental Health
Identity was at the heart of Ohio Advocates. Every day, board and staff members chose to self-identify as mentally ill, usually after having wrestled for years with what it means to admit to a troubled mood or mind. The organization’s mission was to help people live more satisfying lives, and we, like others in the recovery movement, believed this began with peer support—identifying with another person’s struggles and having him or
Published by Duke University Press
Journal of Health Politics, Policy and Law
922
Journal of Health Politics, Policy and Law
her identify with yours. The politics of peer support are surprisingly complicated. Support groups are commonplace, but in the case of mental illness, the competency of peers to support one another is routinely questioned. Nevertheless, the value of peer support to mental health consumers is well documented in the literature (Pfeiffer et al. 2011), so much so that mental health provider agencies often hire ‘‘peers’’ to provide support to patients (and to render a mental health service at a pay rate no professional would accept). Because so many seriously mentally ill people are eligible for Medicaid and because mental health agencies are so consistently underfunded, the Centers for Medicare and Medicaid Services (CMS) has, since 2007, offered reimbursement for ‘‘peer-support specialists.’’ Yet CMS requires these peers to work under the supervision of mental health professionals and to be trained and certified by the state. This seems to some to betray the origins of peer support as a counterweight to professional and governmental norms and attitudes. Of course, others are just glad for the jobs; mentally ill individuals experience an unemployment rate of 60 to 80 percent (NASMHPD 2007), and a third to a half of seriously mentally ill people live below or near the federal poverty level (Cook 2006). In Ohio, a number of peer-support groups have matured into consumerrun organizations, and here one’s identity as a consumer is equally consequential. These organizations provide peer support but also a range of other nonclinical services, including meals, classes in nutrition or computing, social events, and opportunities to advocate or to provide services in the community. Local police departments sometimes ask consumer-run organizations to assist them in formulating policies for psychiatric crisis intervention; a member may advise police at one time and later benefit from that advice. Some consumer-run organizations provide what they term ‘‘respite services’’ but might more accurately be called ‘‘asylum’’ or ‘‘sanctuary.’’ This is a residential alternative to hospitalization for consumers who want to remove themselves from their often tumultuous surroundings and spend time in a safe, quiet, and supportive place. There are no hospital forms or bracelets, and the residents decide when their crises have passed. Most importantly, consumer-run organizations recognize consumers not just as peers but as leaders and members of a participatory democracy. The organization is led by a board, the majority of whose members are required to be consumers. This board hires and fires the director, and although he or she may be a nonconsumer, this is rarely the case. Boards typically have committees such as finance, personnel, and outreach, and the
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
-
Active Voice
923
organization’s membership expects to have access to the decision-making process. Here, a spoiled identity (and the experience it brings) is requisite for political power. It is also relatively easy to claim. In my experience, one’s assertion of consumer status was rarely questioned, perhaps because consumer-run organizations need willing participants. It also seemed unlikely that anyone would claim to be mentally ill in order to work hard for little or no money under what could be decidedly difficult circumstances. When it came to receiving consumer-run services, however, identity might be contested. At least one consumer-run organization was challenged to confirm the consumer status of the people it served: its major funder suspected homeless but not mentally ill people were eating consumer-run and -targeted meals. Strictly speaking, receipt of mental health services and not mental illness per se confers membership in consumer-run organizations (and secures roles elsewhere in the public mental health system). This may reflect the linguistic shift to consumer generally, a privileging of mentally ill people who have been treated over those who have not, or the belief that it is as much the experience of mental health care as that of mental illness that changes people’s lives and informs their activity. In any case, the emphasis on receiving service contributes to consumers’ ability to validate one another’s identity—not as physicians would, with diagnostic criteria and severity indicators, but through the communication that someone has in fact ‘‘been there’’ twice: in the pain and in the system. The state mental health agency was generally supportive of consumers, consumer-run organizations, and Ohio Advocates specifically. Moreover, individual state staffers were often deeply committed to consumers, being consumers or family members of consumers themselves. On the other hand, the historical roots and ongoing activities of consumer-run organizations were set, in many instances, in opposition to the state mental health system, whether at a philosophical or practical level. The same was true for Ohio Advocates. We wondered about the point at which cooperation with state and federal agencies might become co-optation. This was complicated by our need for public money, as we pointedly refused proffered funding from the pharmaceutical industry. We were constantly alert to the possibility that a state-sanctioned medical model could swallow consumerism whole. Among consumer-run organizations, the question of Medicaid certification epitomized this possibility. In order to be Medicaid certified for, say, case management services, organizations would have to run at least that service as an agency would, with professionals who might not be consumers and the attendant record-keeping, eligibility determining, and
Published by Duke University Press
Journal of Health Politics, Policy and Law
924
Journal of Health Politics, Policy and Law
privileging of professional expertise over lived experience. At the time that I served on the Ohio Advocates board, there was only one Medicaid-certified consumer-run organization in the state. Financial and political pressures were moving others in that direction, however, and the question of whether consumer-run organizations should become mini-agencies was widely debated. For his part, the director of the sole Medicaid-certified organization kept the Medicaid services spatially separated from the other, more democratic and peer-driven activities of the group. He was, ironically, one of the most vocal proponents of subordinating the professional — and reimbursable—operations of consumer-run organizations to the theory and practice of consumer-driven recovery. The state policies on which Ohio Advocates took a position often involved matters of identity. We were instrumental in the legislature’s removal of offensive language from state statute, for example. Among ourselves, ‘‘crazy’’ or ‘‘wacko’’ was liberally applied, mostly in an affectionate way. Board members might say, ‘‘Did you forget to take your meds today?’’ or ‘‘This is totally wacko, and that’s a technical term.’’ Still, we advocated and achieved the removal of ‘‘lunatic’’ from the Ohio Revised Code. Ohio Advocates also actively supported state policy recognizing advance directives in psychiatric care, and we provided training for consumers who wanted to formulate such directives or help others formulate them. Unlike advance directives for end-of-life care, the mental health variety is designed to make an individual’s care preferences known before psychosis renders her judgment suspect. In other words, someone with severe depression might set up an advance directive stipulating that in the case of depressive psychosis, he agrees to be medicated even if he says he does not but that under no circumstance does he agree to electroconvulsive therapy (ECT). This mechanism defines for other people the individual’s ‘‘real’’ identity ( i.e., the one formulating the advance directive) and protects this identity from possible violation by future caregivers. In the example above, the depression patient would not have his refusal of ECT dismissed as a manifestation of the present psychosis. Advance directives of course assume that someone likely to experience a psychiatric crisis is competent to direct her care in advance and, further, that the state should guarantee her right to do so. For those in the mental health community who support measures that would make it easier to treat people against their will, advance directives are considered risky and misguided. Still, they hope that people will agree in advance to treatment in the event of a psychotic episode and thereby override obstacles to treatment at that time.
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
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Active Voice
925
Scholarship and Activism
Serving on the Ohio Advocates for Mental Health board enriched me personally and professionally. It did not change my identity—I had been ‘‘out’’ as a psychiatric patient for a long time—but I came to understand the prismatic quality of mental health activism. Psychiatric disability, even more than physical disability, challenges an individual to claim a spoiled identity and to assert the legitimacy not only of the life but also of the claim. In other words, consumers face two challenges to legitimacy: one to the value of lives lived with mental illness and one to the believability of what mentally ill people say about their lives—or anything else. Allies (and often adversaries) are similarly situated, and all of this unfolds in an environment where a prior question is asked of political engagement: What is the right of these people to be here? Has not their illness corrupted their will and their voice, the very instruments of political participation? Do not their past actions bar them from collective action? Is not their rightful claim to medical treatment and not to political inclusion? Mental health policy is itself often about identity—do we say ‘‘lunatic,’’ may people predirect their psychosis care, and especially for Ohio Advocates, is there support not just for services but for consumer-run service organizations? I was often exhilarated to find in the political arena my personal struggles writ large. Although I mostly ‘‘passed’’ and was not routinely called a lunatic (although my department chair once asked if a concurrent medical condition was the source of my ‘‘looniness’’), I did have to press my university health system to implement parity before there were parity laws. There were some days, though, when the deep resonance of public issues with private ones, and of my comrades’ pain with my own, left me exhausted and raw. On those days I thought I might like to save the whales. When I first contacted the Ohio Advocates CEO, I was proposing a study of mental health consumers’ attitudes toward evidence-based practice. My proposal was accepted, and I completed a two-year study on that topic during my time on the board. Some of my focus groups were held at a consumer-run organization, and I became intrigued by these sites of participatory democracy. Because many students of mental health care are from fields outside political science and because even those within political science may be unfamiliar with consumer-run organizations, I believed it important that these be studied as civic organizations rather than as mere service providers. A second grant allowed me to carry out that research, and I believe it is among my best work (Tanenbaum 2011). In this way and others, I received much more from Ohio Advocates than I was able to give.
Published by Duke University Press
Journal of Health Politics, Policy and Law
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Journal of Health Politics, Policy and Law
For all my commitment and expertise, I never learned so much as I did on the board. I laughed and cried—and deliberated and strategized—with people I would not otherwise have met. I experienced, and didn’t just read about or interview, the people whose lives are the stuff of mental health policy: the gentle man who sat with me at a board dinner and later, during a Vietnam flashback, turned his gun on police; the commanding and entrepreneurial consumer-run organization director who had a million-dollar budget and once lived under a park bench; and the board treasurer who staffed a consumer-run organization, finished a master’s degree, and raised two children, one with special needs, between psychiatric hospitalizations. These people were my teachers, and I often brought my own students, including one who would become a psychiatrist, to Ohio Advocates board meetings. Consumers active in the organization knew much more than their own stories and the stories of their peers. They knew the mental health system intimately—how to use it and survive it, how the complicated, even arcane, provisions of health and disability policy are interwoven in a safety net of sorts, how to incur medical expenses at the beginning of the month so as to spend down to Medicaid eligibility as quickly as possible. Much earlier in my career, a preeminent social policy scholar explained that policy analysis could begin with ‘‘hot knowledge,’’ the intense experience of policy’s effects on real people. My time as an Ohio Advocates board member warms my scholarship and activism still.
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Sandra J. Tanenbaum is a member of the Health Services Management and Policy faculty at the Ohio State University College of Public Health. Trained at MIT as a political scientist, her research interests center on the politics of policy ideas, including pay-for-performance and small-area variation, and on the emancipatory potential of policy ideas about people with disabilities. Her substantive expertise extends to Medicare, Medicaid, and disability policy generally and to the philosophy and politics of the evidence-based medicine movement. Tanenbaum serves as US regional editor of the UK-based Journal of Evaluation in Clinical Practice and as coeditor (with Deborah Stone) of the special section Active Voice in JHPPL. In the United States, her articles have appeared in JHPPL, Health Affairs, Milbank Quarterly, and others and, abroad, in Health Care Analysis, British Medical Journal, and the Journal of Evaluation in Clinical Practice.
Published by Duke University Press
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Active Voice
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References Cook, J. A. 2006. ‘‘Employment Barriers for Persons with Psychiatric Disabilities: Update of a Report for the President’s Commission.’’ Psychiatric Services 57, no. 10: 1391–405. doi:10.1176/appi.ps.57.10.1391. NASMHPD (National Association of State Mental Health Program Directors) and AHP (Advocates for Human Potential, Inc.). 2007. Promoting Independence and Recovery through Work: Employment for People with Psychiatric Disabilities. Video webcast. National Governors Association Center for Best Practices, July 31. http:// media.nga.org/2007/070731MHWebcast.wmv. Pfeiffer, Paul N., Michele Heisler, John D. Piette, Mary A. M. Rogers, and Marcia Valenstein. 2011. ‘‘Efficacy of Peer Support Interventions for Depression: A MetaAnalysis.’’ General Hospital Psychiatry 33, no. 1: 29–36. Tanenbaum, Sandra J. 2011. ‘‘Consumer-Operated Service Organizations: Citizenship as a Core Function and Strategy for Growth.’’ Health Care Analysis 19, no. 2: 192–205.
Published by Duke University Press
Active Voice
Advocating Self-Advocacy: Board Membership in a Statewide Mental Health Consumer Organization Sandra J. Tanenbaum Ohio State University
Abstract Until 2008 Ohio Advocates for Mental Health was a statewide mental health advocacy organization run by mental health consumers and supportive of consumer-run organizations around the state. The author’s tenure on the board entailed repeated engagement with questions of identity—self-identity, peer support through personal identification, and negotiation of public identities with provider groups and the state agency. These are fundamental to defining and legitimating the claims of mentally ill people not just for health care resources but for full participation as citizens in the public sphere.
Ohio Advocates for Mental Health
My tenure on the board of a statewide mental health consumer organization involved a continuous and reflexive practice of identity politics. I was a mental health policy scholar and a consumer of mental health services. The organization I joined, Ohio Advocates for Mental Health, represented the interests not only of mentally ill people but of local, consumer-run service organizations across the state. These organizations in turn advocated for their members and provided ‘‘self-advocacy’’ training for them. At the heart of this activity were the tenets of the mental health consumer movement (later recast as the ‘‘recovery’’ movement), which like other disability rights movements insists on ‘‘nothing about us without us.’’ Ohio Advocates was not the state chapter of the better known National Alliance for Mental Illness (NAMI); we considered NAMI too beholden to family and professional interests. Ohio Advocates was all about consumers. Journal of Health Politics, Policy and Law, Vol. 39, No. 4, August 2014 DOI 10.1215/03616878-2744423 Ó 2014 by Duke University Press
Published by Duke University Press
Journal of Health Politics, Policy and Law
920
Journal of Health Politics, Policy and Law
I came to Ohio Advocates inadvertently. I was writing a proposal for research funding from the Ohio Department of Mental Health and sought entre´e into consumer groups where I might find focus group participants. I had only sketchy knowledge of Ohio Advocates, but I was sympathetic to its mission, having struggled for many years with mental illness and the disenfranchisement it entails. The CEO of Ohio Advocates turned out to be extremely helpful and directed me not only to potential research subjects but to his organization’s website. There I filled out what I thought was a membership application but was in fact a bid to join the organization’s board. Sometime later, Ohio Advocates notified me that I had been appointed to one of two ‘‘professional’’ seats on the board. I would learn that for the most part, the people in these seats were professionals who were also consumers. The same was true of the organization’s staff. The lunatics definitely ran this asylum, and in that sense, even ordinary organizational tasks amounted to political activism. I joined the board’s policy committee and came to appreciate Ohio Advocate’s political presence in the state and at the State House. Huddling over Styrofoam cups of passable coffee, the committee would consider requests, from legislators and bureaucrats, for positions on various policy proposals. These included, during my tenure, outpatient commitment, mental health system reorganization, and the indefinite incarceration of sexual predators in state mental hospitals. State-elected officials as well as the cabinet-level director of the Ohio Department of Mental Health regularly appeared at our annual conference—a gathering of hundreds of experienced and occasionally raucous mental health advocates. (One year, an excited psychiatric service dog bit someone.) I attributed this regard to the performance of the Ohio Advocates staff. The CEO was a longtime, knowledgeable, and charismatic mental health activist who lobbied hard and well. Two other staffers, a licensed social worker and attorney respectively, demonstrated to policy makers and the press that mental health consumers could be highly skilled and perfectly reasonable. Of course, Ohio Advocates was not always welcome in the policy community— we were dismissed most notably by the association of mental health provider agencies — but even our detractors acquiesced to the inevitable presence of consumer interests around any table set by the public mental health system. Ohio Advocates’ funding came mostly from state and federal grants to support technical assistance to local peer-support and consumer-run service organizations. Staff members provided training and training-fortrainers, financial and management consulting, and informal help with
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
-
Active Voice
921
operational and political problems that arose. Peer support was foundational to all the organizations in the Ohio Advocates’ network, but we considered ‘‘consumer-run’’ organizations, which were independent, nonprofit organizations with majority consumer boards, the more advanced expression of mental health recovery. ‘‘Peer-support’’ groups operated under the auspices and control of mental health provider agencies and other nonconsumer entities. Consumer-run organizations, in contrast, were independent 501(c)(3) organizations run by mentally ill people themselves. These organizations were loci of citizenship for people whose participation even in their own care was hobbled by illness, social class, and stigma. Ohio Advocates helped peer organizations to succeed as such and also to evolve toward greater organizational independence. Membership on the Ohio Advocates board ushered me into the company of advocates not only for better health care but for better lives—selfdetermining lives — for themselves and others like them. I was initially uncertain of how I fit in. I sat in a ‘‘professional’’ seat but also in a world of hurt. I shared illness experiences with other board members, but because I managed to hold onto my job, I did not share their poverty. I know, because they told me, that some expected me to be snooty but found that I was not; the black humor of commiserating mental patients leveled social hierarchies and stirred up a glue of comradeship in a world that seems to have lost its mind. Board members had considerable respect for the expertise born of suffering and surviving mental illness. Most of us were reluctant to discount the remarks of a member struggling to make sense; there was plenty of time to get your point across and plenty of interest in what you said. Reflecting on the term consumer, we guessed it was better than patient, but the image of a prosperous buyer choosing among high-quality goods flew in the face of our experiences with mental health services. Some mental health activists use the term survivor to identify themselves, although unlike survivors of cancer, these activists are understood to have survived the treatment rather than the disease. Identity Politics in Mental Health
Identity was at the heart of Ohio Advocates. Every day, board and staff members chose to self-identify as mentally ill, usually after having wrestled for years with what it means to admit to a troubled mood or mind. The organization’s mission was to help people live more satisfying lives, and we, like others in the recovery movement, believed this began with peer support—identifying with another person’s struggles and having him or
Published by Duke University Press
Journal of Health Politics, Policy and Law
922
Journal of Health Politics, Policy and Law
her identify with yours. The politics of peer support are surprisingly complicated. Support groups are commonplace, but in the case of mental illness, the competency of peers to support one another is routinely questioned. Nevertheless, the value of peer support to mental health consumers is well documented in the literature (Pfeiffer et al. 2011), so much so that mental health provider agencies often hire ‘‘peers’’ to provide support to patients (and to render a mental health service at a pay rate no professional would accept). Because so many seriously mentally ill people are eligible for Medicaid and because mental health agencies are so consistently underfunded, the Centers for Medicare and Medicaid Services (CMS) has, since 2007, offered reimbursement for ‘‘peer-support specialists.’’ Yet CMS requires these peers to work under the supervision of mental health professionals and to be trained and certified by the state. This seems to some to betray the origins of peer support as a counterweight to professional and governmental norms and attitudes. Of course, others are just glad for the jobs; mentally ill individuals experience an unemployment rate of 60 to 80 percent (NASMHPD 2007), and a third to a half of seriously mentally ill people live below or near the federal poverty level (Cook 2006). In Ohio, a number of peer-support groups have matured into consumerrun organizations, and here one’s identity as a consumer is equally consequential. These organizations provide peer support but also a range of other nonclinical services, including meals, classes in nutrition or computing, social events, and opportunities to advocate or to provide services in the community. Local police departments sometimes ask consumer-run organizations to assist them in formulating policies for psychiatric crisis intervention; a member may advise police at one time and later benefit from that advice. Some consumer-run organizations provide what they term ‘‘respite services’’ but might more accurately be called ‘‘asylum’’ or ‘‘sanctuary.’’ This is a residential alternative to hospitalization for consumers who want to remove themselves from their often tumultuous surroundings and spend time in a safe, quiet, and supportive place. There are no hospital forms or bracelets, and the residents decide when their crises have passed. Most importantly, consumer-run organizations recognize consumers not just as peers but as leaders and members of a participatory democracy. The organization is led by a board, the majority of whose members are required to be consumers. This board hires and fires the director, and although he or she may be a nonconsumer, this is rarely the case. Boards typically have committees such as finance, personnel, and outreach, and the
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
-
Active Voice
923
organization’s membership expects to have access to the decision-making process. Here, a spoiled identity (and the experience it brings) is requisite for political power. It is also relatively easy to claim. In my experience, one’s assertion of consumer status was rarely questioned, perhaps because consumer-run organizations need willing participants. It also seemed unlikely that anyone would claim to be mentally ill in order to work hard for little or no money under what could be decidedly difficult circumstances. When it came to receiving consumer-run services, however, identity might be contested. At least one consumer-run organization was challenged to confirm the consumer status of the people it served: its major funder suspected homeless but not mentally ill people were eating consumer-run and -targeted meals. Strictly speaking, receipt of mental health services and not mental illness per se confers membership in consumer-run organizations (and secures roles elsewhere in the public mental health system). This may reflect the linguistic shift to consumer generally, a privileging of mentally ill people who have been treated over those who have not, or the belief that it is as much the experience of mental health care as that of mental illness that changes people’s lives and informs their activity. In any case, the emphasis on receiving service contributes to consumers’ ability to validate one another’s identity—not as physicians would, with diagnostic criteria and severity indicators, but through the communication that someone has in fact ‘‘been there’’ twice: in the pain and in the system. The state mental health agency was generally supportive of consumers, consumer-run organizations, and Ohio Advocates specifically. Moreover, individual state staffers were often deeply committed to consumers, being consumers or family members of consumers themselves. On the other hand, the historical roots and ongoing activities of consumer-run organizations were set, in many instances, in opposition to the state mental health system, whether at a philosophical or practical level. The same was true for Ohio Advocates. We wondered about the point at which cooperation with state and federal agencies might become co-optation. This was complicated by our need for public money, as we pointedly refused proffered funding from the pharmaceutical industry. We were constantly alert to the possibility that a state-sanctioned medical model could swallow consumerism whole. Among consumer-run organizations, the question of Medicaid certification epitomized this possibility. In order to be Medicaid certified for, say, case management services, organizations would have to run at least that service as an agency would, with professionals who might not be consumers and the attendant record-keeping, eligibility determining, and
Published by Duke University Press
Journal of Health Politics, Policy and Law
924
Journal of Health Politics, Policy and Law
privileging of professional expertise over lived experience. At the time that I served on the Ohio Advocates board, there was only one Medicaid-certified consumer-run organization in the state. Financial and political pressures were moving others in that direction, however, and the question of whether consumer-run organizations should become mini-agencies was widely debated. For his part, the director of the sole Medicaid-certified organization kept the Medicaid services spatially separated from the other, more democratic and peer-driven activities of the group. He was, ironically, one of the most vocal proponents of subordinating the professional — and reimbursable—operations of consumer-run organizations to the theory and practice of consumer-driven recovery. The state policies on which Ohio Advocates took a position often involved matters of identity. We were instrumental in the legislature’s removal of offensive language from state statute, for example. Among ourselves, ‘‘crazy’’ or ‘‘wacko’’ was liberally applied, mostly in an affectionate way. Board members might say, ‘‘Did you forget to take your meds today?’’ or ‘‘This is totally wacko, and that’s a technical term.’’ Still, we advocated and achieved the removal of ‘‘lunatic’’ from the Ohio Revised Code. Ohio Advocates also actively supported state policy recognizing advance directives in psychiatric care, and we provided training for consumers who wanted to formulate such directives or help others formulate them. Unlike advance directives for end-of-life care, the mental health variety is designed to make an individual’s care preferences known before psychosis renders her judgment suspect. In other words, someone with severe depression might set up an advance directive stipulating that in the case of depressive psychosis, he agrees to be medicated even if he says he does not but that under no circumstance does he agree to electroconvulsive therapy (ECT). This mechanism defines for other people the individual’s ‘‘real’’ identity ( i.e., the one formulating the advance directive) and protects this identity from possible violation by future caregivers. In the example above, the depression patient would not have his refusal of ECT dismissed as a manifestation of the present psychosis. Advance directives of course assume that someone likely to experience a psychiatric crisis is competent to direct her care in advance and, further, that the state should guarantee her right to do so. For those in the mental health community who support measures that would make it easier to treat people against their will, advance directives are considered risky and misguided. Still, they hope that people will agree in advance to treatment in the event of a psychotic episode and thereby override obstacles to treatment at that time.
Published by Duke University Press
Journal of Health Politics, Policy and Law
Tanenbaum
-
Active Voice
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Scholarship and Activism
Serving on the Ohio Advocates for Mental Health board enriched me personally and professionally. It did not change my identity—I had been ‘‘out’’ as a psychiatric patient for a long time—but I came to understand the prismatic quality of mental health activism. Psychiatric disability, even more than physical disability, challenges an individual to claim a spoiled identity and to assert the legitimacy not only of the life but also of the claim. In other words, consumers face two challenges to legitimacy: one to the value of lives lived with mental illness and one to the believability of what mentally ill people say about their lives—or anything else. Allies (and often adversaries) are similarly situated, and all of this unfolds in an environment where a prior question is asked of political engagement: What is the right of these people to be here? Has not their illness corrupted their will and their voice, the very instruments of political participation? Do not their past actions bar them from collective action? Is not their rightful claim to medical treatment and not to political inclusion? Mental health policy is itself often about identity—do we say ‘‘lunatic,’’ may people predirect their psychosis care, and especially for Ohio Advocates, is there support not just for services but for consumer-run service organizations? I was often exhilarated to find in the political arena my personal struggles writ large. Although I mostly ‘‘passed’’ and was not routinely called a lunatic (although my department chair once asked if a concurrent medical condition was the source of my ‘‘looniness’’), I did have to press my university health system to implement parity before there were parity laws. There were some days, though, when the deep resonance of public issues with private ones, and of my comrades’ pain with my own, left me exhausted and raw. On those days I thought I might like to save the whales. When I first contacted the Ohio Advocates CEO, I was proposing a study of mental health consumers’ attitudes toward evidence-based practice. My proposal was accepted, and I completed a two-year study on that topic during my time on the board. Some of my focus groups were held at a consumer-run organization, and I became intrigued by these sites of participatory democracy. Because many students of mental health care are from fields outside political science and because even those within political science may be unfamiliar with consumer-run organizations, I believed it important that these be studied as civic organizations rather than as mere service providers. A second grant allowed me to carry out that research, and I believe it is among my best work (Tanenbaum 2011). In this way and others, I received much more from Ohio Advocates than I was able to give.
Published by Duke University Press
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Journal of Health Politics, Policy and Law
For all my commitment and expertise, I never learned so much as I did on the board. I laughed and cried—and deliberated and strategized—with people I would not otherwise have met. I experienced, and didn’t just read about or interview, the people whose lives are the stuff of mental health policy: the gentle man who sat with me at a board dinner and later, during a Vietnam flashback, turned his gun on police; the commanding and entrepreneurial consumer-run organization director who had a million-dollar budget and once lived under a park bench; and the board treasurer who staffed a consumer-run organization, finished a master’s degree, and raised two children, one with special needs, between psychiatric hospitalizations. These people were my teachers, and I often brought my own students, including one who would become a psychiatrist, to Ohio Advocates board meetings. Consumers active in the organization knew much more than their own stories and the stories of their peers. They knew the mental health system intimately—how to use it and survive it, how the complicated, even arcane, provisions of health and disability policy are interwoven in a safety net of sorts, how to incur medical expenses at the beginning of the month so as to spend down to Medicaid eligibility as quickly as possible. Much earlier in my career, a preeminent social policy scholar explained that policy analysis could begin with ‘‘hot knowledge,’’ the intense experience of policy’s effects on real people. My time as an Ohio Advocates board member warms my scholarship and activism still.
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Sandra J. Tanenbaum is a member of the Health Services Management and Policy faculty at the Ohio State University College of Public Health. Trained at MIT as a political scientist, her research interests center on the politics of policy ideas, including pay-for-performance and small-area variation, and on the emancipatory potential of policy ideas about people with disabilities. Her substantive expertise extends to Medicare, Medicaid, and disability policy generally and to the philosophy and politics of the evidence-based medicine movement. Tanenbaum serves as US regional editor of the UK-based Journal of Evaluation in Clinical Practice and as coeditor (with Deborah Stone) of the special section Active Voice in JHPPL. In the United States, her articles have appeared in JHPPL, Health Affairs, Milbank Quarterly, and others and, abroad, in Health Care Analysis, British Medical Journal, and the Journal of Evaluation in Clinical Practice.
Published by Duke University Press
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References Cook, J. A. 2006. ‘‘Employment Barriers for Persons with Psychiatric Disabilities: Update of a Report for the President’s Commission.’’ Psychiatric Services 57, no. 10: 1391–405. doi:10.1176/appi.ps.57.10.1391. NASMHPD (National Association of State Mental Health Program Directors) and AHP (Advocates for Human Potential, Inc.). 2007. Promoting Independence and Recovery through Work: Employment for People with Psychiatric Disabilities. Video webcast. National Governors Association Center for Best Practices, July 31. http:// media.nga.org/2007/070731MHWebcast.wmv. Pfeiffer, Paul N., Michele Heisler, John D. Piette, Mary A. M. Rogers, and Marcia Valenstein. 2011. ‘‘Efficacy of Peer Support Interventions for Depression: A MetaAnalysis.’’ General Hospital Psychiatry 33, no. 1: 29–36. Tanenbaum, Sandra J. 2011. ‘‘Consumer-Operated Service Organizations: Citizenship as a Core Function and Strategy for Growth.’’ Health Care Analysis 19, no. 2: 192–205.
Published by Duke University Press
