the origins of the consumer/ family alcohol & drug and mental health advocacy movements Sheryl McCormick, Advocacy Coordinator
The more things change, the more they stay the same. Under the banner, “The Law Must Recognize a Leading Fact: Medical Not Penal Treatment Reforms the Drunkard,” the Keeley League, a national patient mutual aid society that combined advocacy with support was founded in 1891 but met only through 1892.1 How sad that more than a century later our jails and prisons are filled predominantly with persons with substance abuse and often co-occurring psychiatric disorders!2
Following the Keeley League’s demise as public condemnation of substance abuse grew over the next four and a half decades, secrecy prevailed among those seeking detoxification. In 1935, the meeting of Bill W. and Dr. Bob marked the beginning of Alcoholics Anonymous (A.A.), with the single purpose to offer mutual support to alcoholics.1 Alcoholics Anonymous, having anonymity as an essential tenet, was never intended to be an advocacy group. The companion group of Al-Anon for family members shares the guidelines of Alcoholics Anonymous.3 While members of A.A. and Al-Anon may be advocates, they usually do so with their anonymity as a member of the fellowship intact.
Marty Mann, the first woman to stay sober in Alcoholics Anonymous, passionately believed that the country must be educated about alcoholism as an illness and not a moral problem.4 She spearheaded a cause in 1944 that continues to the present as the National Council on Alcoholism and Drug Dependence or NCADD with phenomenal results. However, the organization Marty started is more similar to the National Mental Health Association than to NAMI or most mental health consumer associations in that local community organizations affiliated with NCADD operate primarily as information centers, not centered around organizing as grassroots advocates persons directly affected by the disorders. NCADD has helped fight the stigma of alcoholism and advocated successfully on behalf of persons with substance abuse disorders for many state and national policy changes.
The organization Marty formed promoted five propositions4:
Almost 60 years later, the same health and associated societal problems have not changed significantly for the better. Last year the Robert Wood Johnson Foundation published a report prepared by the Schneider Institute for Health Policy at Brandeis University entitled “Substance Abuse: The Nation’s Number One Health Problem.”5 The overall conclusion of the report is that, although we know what to do, we do not fund what it takes to address a largely preventable and treatable problem; so we pay in other more tragic ways. Tracking trends for thirty years, the report reveals that substance abuse is the causes more deaths, illnesses, and disabilities than any other preventable health problem.
The self-advocacy movement for psychiatric disorders has been the result of persons who had been in mental hospitals or who had received other psychiatric care speaking out about either their mistreatment or unmet needs and organizing with others with similar experiences to fight for their rights and improved treatments. As far back as 1868, Elizabeth Packard formed the Anti-Insane Asylum Society to inform society about her experiences in an Illinois asylum. The group met so much opposition that their efforts had little, if any, effect.6
Clifford W. Beers, a former psychiatric patient and author of “A Mind That Found Itself,” founded the Connecticut Society for Mental Hygiene in 1908.7 The following year the society formed the National Committee for Mental Hygiene with three goals:
Rather than organizing others like himself, Clifford realized that concerned citizens, especially those with connections, could have more influence on policymaking than ex-patients during a time when opposition to patients? rights was strong. The group he began is now known as the National Mental Health Association (NMHA). Over the years the national, state and local Mental Health Associations have had more consumer involvement. Some MHAs serve as fiduciaries to drop-in centers, consumer-run programs that provide socialization, and usually education, advocacy, and support. The NMHA provides advocacy training and education about all aspects of mental health.
In contrast, the National Alliance for the Mentally Ill (now known simply as NAMI) has always focused specifically on the needs of persons with severe mental illnesses, especially those most disabling in nature. With the wide-scale deinstitutionalization that occurred beginning in the 1960’s that reached its zenith in the 70’s, many persons who had previously been hospitalized required the specialized support systems in place in order to remain in the community safely. The lack of attention the public system paid to creating and maintaining a comprehensive system of care and the lack of communication between mental health providers and families was the impetus for the Alliance of the Mentally Ill to be formed, primarily by parents, in September 1979. NAMI continues to advocate for the fulfillment of the government’s forty-year old promise to provide community-based services for consumers.
According to “A History for the National Alliance for the Mentally Ill,” by Harriet Shetler, NAMI “is a story of a handful of families in dozens of cities across the country who found each other?it is the story of one small group at a time becoming organized without knowing there was a similar group in any other town or state?it is the story of courageous individuals who braved the stigma of mental illness to come out of the closet in their communities and find other people with the same problem.”8
Many of the consumers who were represented by the original members of NAMI were too impaired to advocate for themselves. All too often family members found themselves in the position of trying to access services and supports for their family members. By virtue of being “secondary” consumers, they had a vested interest in finding necessary community-based treatment in a timely fashion for their loved ones, many of whom lived with their families because appropriate community housing was not available. They began with the purpose of learning about federal legislation, current research, and the latest treatments for chronic mental illness; to encourage mutual help/advocacy groups to improve the lives of the mentally ill and their families; and to create a national network of local and state groups. Consumers could be and were members in most affiliates from the beginning. By 1984, all fifty states had affiliates and in 1985, NAMI set up a Client Council with each state having one consumer delegate. In 1986 the bylaws changed to include one council representative to serve on the Board of Directors. Now board members may be elected from family members, consumers, or other concerned citizens.8 NAMI has a strong education and support component for both consumers and families with each constituency group offering training to teach or facilitate groups of their peers. NAMI strongly supports the recovery model.
Since the 1940’s, consumer advocacy groups formed around various issues with members calling themselves clients, ex-patients, psychiatric survivors, or mental health consumers. We Are Not Alone (WANA) was founded in the 40’s by former psychiatric patients helping others to transition from the hospital into the community. Their work resulted in Fountain House, a psychosocial rehabilitation service that was a model for other clubhouses into the 1970’s.6
New psychotropic medications developed in the 1950’s allowed many who were previously committed for life to in-patient facilities to be released or deinstitutionalized. Ex-patients who had witnessed or endured horrific treatments, including insulin shock and lobotomies, lobbied against forced treatment and social discrimination.6
The civil rights movement of the 1960’s inspired other groups, including disability rights movements, to organize.9
By the 1980’s persons who identified themselves as needing mental health treatment began to call themselves consumers with the rights to fully participate in their own treatment. This movement was not in opposition to the psychiatric community, as previous groups often were. Consumer-run programs developed to empower and support peers in recovery. Consumer groups collaborated with other stakeholder groups to promote community reintegration and improve the quality of treatment and lives of consumers.6
Approximately 50% of persons with psychiatric disorders have co-occurring substance use disorders.10 Dual consumers need encouragement and training to self-advocate so that their special needs are addressed satisfactorily.
Each state is required to have a planning and advisory council comprised of at least fifty percent consumers, family members and advocates to advise the state on how to spend their federal mental health block grant dollars. Unless the council approves its state plan to allocate the dollars, the federal government will not release the funds. This process has led to improved networking and problem solving among many stakeholders on the mental health side since the laws were enacted, mandated a place at the table for consumers and families that encouraged the growth of mental health advocacy.11 With state mental health authorities actively involved, empowerment of consumers and their families was supported. Block grant dollars are used for community support services such as drop-in centers, consumer and family education, support groups, and advocacy organizations.
The SAMHSA alcohol and drug abuse grants do not have a similar federally-mandated mechanism in place to insure that input of consumers of alcohol and drug abuse treatment services and/or that of their family members is considered concerning the expenditures of A&D dollars. The substance abuse community lacks a recognized advocacy presence from those purchasing and/or receiving services. Federal and state government encouragement would facilitate the increased visibility of advocates whose direct experience can help guide the system towards better outcomes.
The tradition of anonymity has been a source of confusion in the A&D self-help movement. Some have misunderstood that to reveal their own recovery status would be a violation, when in actuality the anonymity is to shield the group and to avoid giving the impression that one’s affiliated group has taken the position expressed by the individual.3 Personal experience uniquely qualifies service recipients to advise on ways to effectively utilize available funding and help policymakers determine how to develop programs that will positively affect all citizens. Many in the substance abuse recovery movement are not involved in advocacy efforts, because their entr?e into the self-help world has no advocacy component by design that could facilitate their participation. Peer support groups, such as the model for twelve step groups Alcoholics Anonymous, have served their members well by having a single focus while the group “tends their own affairs.”12 Not unexpectedly, no organized advocacy has developed from the membership of peer support groups for those with substance abuse disorders. The opportunity exists to include service-minded recovering persons with solutions to share who are presently unaware of ways that they can help proactively change systems that directly affect them.
Currently the mental health advocacy movement is more organized than the substance abuse advocacy community. One important reason is the intentional rejection of the stigma often associated with psychiatric illnesses. Mental health consumers and their family members have chosen to openly talk about their experiences in order to fight discrimination and dispel myths by giving a face to the disorders and to show friends, relatives, co-workers and policymakers that recovery is possible with the right care and support.14
So? who does provide advocacy for and by dual consumers?
Advocacy for the separated components of co-occurring psychiatric and substance abuse disorders have developed separately, mainly in the last sixty years. The efforts have not merged, consistent with existing parallel treatment systems, and possibly because formal acknowledgment of dual disorders followed widespread deinstitutionalization. During the time when most persons with severe psychiatric illnesses were institutionalized, lack of access to drugs and alcohol protected patients from developing obvious co-occurring substance abuse disorders.10 Now the problem of co-occurrence is so common among both persons first identified with substance abuse and persons first identified with psychiatric disorders that it cannot be ignored. Advocacy groups such as NAMI and the NMHA have taken positions that recognize the needs of persons with co-occurring disorders, but advocacy for dual disorders has yet to be fully integrated within any advocacy system. For at least ten million people nationwide who have dual disorders, has the time finally come for concerned stakeholders to begin concentrated advocacy focused on co-occurring psychiatric and substance abuse disorders?15
References 1 Significant Events in the History of Addiction Treatment and Recovery in America. The National Council on Alcoholism and Drug Dependence, New York, NY, http://www.ncadd.org/history/events.html
2 Mumola, C.J. (1999)“Substance Abuse and Treatment, State and Federal Prisoners, 1997″ (NCJ-1772871).Bureau of Justice Statistics, Washington, DC
3 Al-Anon’s Twelve Steps and Twelve Traditions (1987), Al-Anon Family Group Headquarters, Inc., New York, NY
4 For Over 50 Years, The Voice of Americans Fighting Alcoholism. The National Council on Alcoholism and Drug Dependence, New York, NY, http://www.ncadd.org/history/decade1.html
5 Schneider Institute for Public Policy, Brandeis University, (2001) Substance Abuse: The Nation’s Number One Health Problem, Robert Wood Johnson Foundation, www.rwjf.org/app/rw_substance_abuse/rw_res_sa_chartbook.html
6 History of the Mental Health Self-Help and Advocacy Movement. National Mental Health Consumers Self-Help Clearinghouse, Philadelphia, PA
7 NMHA and the History of the Mental Health Movement. National Mental Health Association, Alexandria, VA, http://www.nmha.org/about/history.cfm
8Shetler, H., ed., “A History for the National Alliance for the Mentally Ill.” The National Alliance of the Mentally Ill, Arlington, VA, 1986
9 Pepper M.D., B. “Mentally Ill Alcohol and Substance Abusers.” The Journal, Vol. 2, Issue 2, Sacramento, CA
10 Kessler, R. (1995) The Epidemiology of Co-occurring Addictive and Mental Disorders. NCS Working Paper #9. Invited conference paper, presented at the SAMHSA sponsored conference.
11Impact of the Consumer/Survivor Self-Help Movement. Knowledge Exchange Network, Center for Mental Health Services, Washington, DC. www.mentalhealth.org/consumersurvivor/selfhelp/ch1.htm
12 About AA, (Sept. 2001)Alcoholics Anonymous,New York, NY
13 Birkel, Richard C., interview with;(Summer 2001) “NAMI, the Grassroots, and Dreaming.” NAMI Advocate, National Alliance for the Mentally Ill, Arlington, VA
14 Clark, W. (Fall 2001) “Co-occurring mental health and substance abuse problems we must treat them both.” NAMI Advocate, National Alliance for the Mentally Ill, Arlington, VAContact Us
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