Committee member Rebecca Palpant Shimkets introduced the next panel, which focused on ways to implement change in the United States by reaching out to strategic audiences. The panelists reflected on the previous panels by bringing in the lived experience of consumers, advocates, family members, and health care practitioners. The panelists were Clarence Jordan, committee member and vice president for wellness and recovery at Beacon Health Options; Ruth Shim, also a committee member, and vice chair of education and faculty development in the Department of Psychiatry, Lenox Hill Hospital, New York City;1 Susan Rogers, director of the National Mental Health Consumers’ Self-Help Clearinghouse and director of special projects for the Mental Health Association of Southeastern Pennsylvania;2 and Joe Powell, executive director of the Association of Persons Affected by Addiction, Dallas, Texas.
Echoing Yang’s earlier presentation (see Chapter 7), Jordan spoke about the importance of employment for people with mental illness and substance use disorders who may experience intersecting stigma arising from their
1 Ruth Shim is now affiliated with the University of California, Davis, Health Department of Psychiatry and Behavioral Sciences.
2 As of September 30, 2015, the clearinghouse no longer receives federal funding but continues to operate, albeit on a more limited basis. And, in May 2017, the Mental Health Association of Southeastern Pennsylvania changed its name to Mental Health Partnerships.
behavioral disorder and from being a member of other minority groups. He commented that the unemployment rate among individuals with significant mental health impairment is high and points to the need to improve the behavioral health care system. He asserted that employment is integral to breaking the cycle of poverty, shedding the patient identity, promoting community tenure, and building resilience. From scanning the related literature, he found two essential themes. First, employment has benefits for all individuals, but it plays an especially important role for members of minority groups who have been socially marginalized and often denied access to jobs. Second, he reported, the benefits are more than financial. A range of social, psychological, and political aspects of employment contribute to outcomes, such as better coping skills and building a positive support network.
A presenter in an earlier panel talked about the importance of messages coming from peer specialists who can assist people in achieving life goals, including employment. Jordan suggested that more work needs to be focused on messaging that targets both the system and individual levels to communicate the critical nature of work for individuals with mental illness and substance abuse disorder. As stated earlier by Kendall-Taylor (see Chapter 9), it may be that a different set of values needs to be communicated to focus more resources on employment and improve outcomes in this domain.
Shim built on earlier remarks by Hansen with respect to the role of clinicians and presented her personal perspective as a clinician and specifically as a psychiatrist. She noted that a large cultural gap can exist between psychiatrists and other members of the behavioral health community. In her opinion, this gap derives from different backgrounds and world views, and these differences are not necessarily bad; they are just different perspectives. Sometimes, she acknowledged, she feels an undercurrent of stigma against psychiatry from within the behavioral health community and from the medical and scientific communities as well.
Shim shared her personal experience both before and during medical school in which she was dissuaded from pursuing psychiatry from many different directions. She was told that there were many other opportunities in medicine and that psychiatrists were not real doctors. People even said that going into psychiatry was a waste of her career. For her, this was personal stigma, and it was experienced in an extreme way.
After 4 years of residency training and learning how to treat mental health problems, Shim said she gained much from exposure to and interaction with the advocacy community. As a result, she began to learn more about and understand the recovery model, which for her has been trans-
formative. She also learned about the importance of terminology, such as referring to people with mental disorders as “consumers” or “clients” instead of “patients,” which she learned was a disempowering word. After residency, she continued, she was thrust into a broken health system and an even worse mental health system characterized by a lack of funding and a lack of political will or interest in addressing these issues. She asserted that the result is fragmented services and a discriminatory system that fails to treat people effectively when they need treatment the most.
Shim commented that this state of affairs is frustrating considering that treatment is known to work and can be very effective. Even though medication and therapy are not completely without side effects, she asserted, they can, particularly used in combination, help people recover. She believes there may be a lack of emphasis on effective treatments and noted that in her role as a psychiatrist, she is often pigeonholed into the role of a prescriber only.
Turning to possible solutions and focusing on points mentioned by earlier speakers, Shim remarked that clinicians do need to start considering the behavioral health needs of the entire population, not just the individuals they are treating. To this end, she considers the community to be her consumer or client, so she works and interacts with the community. Inside the clinic, she argued, clinicians should work side by side with peer specialists, and outside the clinic, they should work with community members and stakeholders to advance issues related to mental health and its improvement.
Shim ended by expressing her belief that the stigma that affects people with mental illness is not accidental, but the result of conscious decisions made in society. Society has decided, she said, that some people are valued more and deserve more and that some deserve less. Funding and services, she asserted, have accordingly been allocated to those people deemed worthy. As a clinician herself, she remarked that clinicians need to expend more effort on helping to create partnerships to change these values and ideas.
Rogers said that most of her work is supported by the National Mental Health Consumers’ Self-Help Clearinghouse (“the clearinghouse”), but that her presentation was supported by her work with the Mental Health Association of Southeastern Pennsylvania. She clarified also that she was not speaking for all people with lived experience, just from her own experience.
In discussing labels, Rogers remarked that she did not approve of the first Bring Change to Mind campaign’s public service announcement (PSA)
showing people in T-shirts with diagnoses printed on the front. She believes this was the wrong message with which to label people, particularly using diagnoses that often are not correct. In addition, she noted, as discussed in earlier presentations, some of the labels used engender prejudice. For example, schizophrenia is a diagnosis that frightens the public. Rogers observed that efforts are under way to change the names of some diagnoses. “Multiple personality disorder” has been changed to “dissociative identity disorder”; “manic depression” has become “bipolar disorder”; and in Japan, schizophrenia used to be known as “mind-split disease” but now is termed “integration disorder.” According to Rogers, a later PSA of the Bring Change to Mind campaign was a major improvement because it showed a man living his life, pouring himself some coffee, with other people—friends or family members—in the background.
Rogers then spoke about initiatives to promote recovery, many of which have been led by the movement for social justice of individuals with psychiatric diagnoses. Joseph Rogers, founder and executive director of the clearinghouse, was an early leader of that movement, along with other pioneering activists around the country. Rogers also credited the Substance Abuse and Mental Health Services Administration (SAMHSA) with promoting recovery. SAMHSA’s Recovery to Practice Initiative, for example, involves the creation of recovery-oriented curricula to train new and upcoming mental health professionals in psychiatry, psychology, social work, and other related professions. Rogers explained that the recovery movement is working to eliminate discrimination and prejudice that prevent individuals with mental health conditions from full inclusion in the community. She gave examples from her own life showing how peer support and other contact experiences, as Corrigan had discussed earlier, promote inclusion and acceptance and reduce attitudes and norms that lead to discrimination and prejudice.
People with lived experience have authentic voices, Rogers said, which are indispensable for the messaging that needs to be delivered through peers, contact programs, or other media/communication campaigns. She showed a slide of a youth leader with quotes from a video: “I have been let down by the system. I have been asked to let go of my culture and my beliefs. I will continue to fight for social justice change. Youth are the future and the
future starts now.”3 Another woman on the same video says, “I have been hurt, discriminated, labeled, and it doesn’t feel good. We are strong, fierce, and we are powerful. I will pave the way for the youth of the future.”
Rogers mentioned a number of channels through which people can share their stories and help to combat prejudice and discrimination. Mind Freedom International has the I Got Better campaign,4 modeled after the It Gets Better campaign in the LGBT community in which people share their stories. The National Alliance on Mental Illness (NAMI) has the In Our Own Voice campaign,5 in which people likewise speak about their experiences. Rogers also described the National Disability Leadership Alliance, a cross-disability coalition of 14 disability rights organizations representing the authentic voices of people with disabilities. Their values, she explained, are self-determination, participation, choice, involvement, consumer control, personhood, and voice. Finally, the Hearing Voices Network helps people who hear voices understand and deal with those voices. Box 10-1 lists other resources that Rogers identified.
Earlier there had been some discussion about use of the word “consumers” to describe individuals with mental health conditions seeking treatment. Rogers said that this term is another label and is no longer seen in a positive light. She believes that individuals should just say that “we are people,” especially since mental health conditions are so common.
Rogers highlighted the contributions of Anna Jennings, who was an inpatient at Philadelphia State Hospital in the 1980s and told stories of horrible abuse and neglect taking place there. Because of Jennings’ courage in sharing this information with people in a position to take action, the hospital closed in 1990. A Pew study found that 5 years later, almost everyone who came out of the hospital was living successfully in the community, although some people did enter Norristown State Hospital. Sadly, Anna Jennings, a childhood sexual abuse victim, died by suicide at the age of 32. Rogers likes to tell her story because Jennings was a person with lived experience who had an authentic voice and leaves an indelible legacy.
Powell shared that he is a person in long-term recovery. He was born and raised in Harlem Hospital and came from a family of seven brothers and one sister and a father who died from alcoholism. Of the seven brothers and one sister, he said, five had serious mental health challenges
5 Available: http://www.nami.org/Find-Support/NAMI-Programs/NAMI-In-Our-Own-Voice [September 2017].
and conditions. One brother was recently released from Manhattan Psychiatric Hospital, where he had been for 30 years.
One of Powell’s slides was a photo of him with his two older brothers and his father, who were entertainers on stage for 17 years in New York City. They were, he said, a healthy-looking family; one could not see the alcoholism, the domestic violence, and all the other childhood adversities. He explained that coming from a family with mental health challenges and addiction led him to work with people with both of those conditions.
Powell has been a licensed drug and alcohol counselor or chemical dependency counselor for 22 years. The Association of Persons Affected
by Addiction (APAA) was launched 17 years ago when SAMHSA issued its first peer-to-peer recovery community support grant to help people seeking recovery. In 2007, APAA was invited by the managed care company Value Options to provide recovery support services because it had the necessary infrastructure. Powell reported that the association received several awards for its work in recovery services and is now one of only five nationally accredited organizations with recovery support standards and the only one in Texas. He explained that the organization currently provides training and helps develop and create training programs not only for people with co-occurring mental health disorders and addiction recovery but also for young peer mentors seeking to work with people ages 16-25. He added that colleges and universities have initiated Young People in Recovery, a peer recovery program, and that Texas is one of the largest states with peer recovery programs not only in community colleges, but also in universities and high schools.
Powell said that in line with Healthy People 2010, an individual is considered to be health literate when he or she possesses the skills to understand the health information and services available and use them to make appropriate decisions about health. He noted that APAA extends this health literacy perspective to teaching people about not only addiction, recovery, and mental health challenges but also how these affect the family and the whole community.
Powell explained further that APAA is guided by principles and practices of recovery, as discussed earlier by Rogers. Foremost, he said, is to provide safe, secure, and healthy support services and to engage people with these services. He added that APAA’s services are organized around an array of social supports, which he believes increases recovery capital and the capacity for health activation. This array of social supports includes
- information services—recovery literature, Paths to Recovery Health Fairs, community events, and education;
- instrumental services—services related to housing, employment, job readiness skills, health and fitness, and health literacy;
- APAA WELLNESS—provided through YMCA, 24 Hour Fitness, Golds Gym, recreation centers, and Hoop after Group;
- companionship/affiliation—volunteerism, mentors, peers, family, “Jammin n’ Recovery,” and social events; and
- emotional—recovery coaching and support groups.
Powell then presented a slide showing Maslow’s hierarchy of needs and Prochaska and DiClemente’s stages of change (Prochaska et al., 1992). He showed these two lists together, he explained, because people often enter APAA’s programs just asking for basic needs—food, shelter, water, and bus
passes—but then shift toward Prochaska and DiClemente’s stages of change as they move from precontemplation to contemplation, to preparation, and to action as they begin feeling safe and secure.
Powell added that recovery language is very important and reminded the audience that he had introduced himself as a person in recovery, not as an addicted person, which, he said, would be contributing to the problem: “When I say I am a person in long-term recovery, what that means is that I am able to be a father today. I am able to be the executive director for the Association of Persons Affected by Addiction. If a camera is on me and the world is looking at me, they don’t say, oh, see, he is another low-down, dirty, rotten alcoholic and addict. He is a person in long-term recovery. He has as much as anybody else.”
The discussion following this session focused on how recovery is defined, the core values of social inclusion and cultural competency, and the special case of the criminal justice system. The first question was posed to Rogers and Powell. An audience member asked, “You are coming from two different communities with two different long histories of what recovery is. How is it similar in mental health and addictions and how is it different?”
Rogers replied that there are as many different opinions about definitions of recovery in mental health as there are people. She referred to Bill Anthony’s (1993) definition, which describes recovery as
. . . a deeply personal, unique process of changing one’s attitudes, values, feelings, goals, skills and/or roles. It is a way of living a satisfying, hopeful, and contributing life even with limitations caused by the illness. Recovery involves the development of new meaning and purpose in one’s life as one grows beyond the catastrophic effects of mental illness.
She said that others think one is no longer in recovery unless one no longer needs treatment. Coming from a cultural perspective within the African American community, Powell stated that his goal is to promote recovery at all levels by overcoming the stigma that cuts across mental illness and substance use and by engaging one person, the family, or the whole community.
Returning to Yang’s notion of “what matters most” (see Chapter 7), Palpant Shimkets asked, “What do you think our core is as behavioral health? What is it that really matters most to us that we need to be targeting now together, collectively?” The panelists all agreed that community inclusion is at the core of movements in behavioral health. Rogers commented that people involved with and affected by behavioral health issues need to
be at the table in decision making, to be citizens like everyone else, and to be included in the community. Echoing earlier discussions, Shim added that what matters most to people is definitely culturally based. Although there are various intersecting cultures and communities with which people identify within the United States, she believes the behavioral health culture values most the idea of social inclusion in all things. Powell described this social inclusion as social connectedness and mentioned a relevant book called Connected, by Christakis and Fowler.
Building on the discussion of culture, an audience member asked why cultural modalities have not been created and integrated into the clinical/medical field. Shim replied that she had had the good fortune to work with Dr. David Satcher, the surgeon general at the time of the surgeon general’s report on mental health in 1999. In 2001, he also issued Race, Ethnicity, and Culture, a supplement to that report. The main message of the latter report, Shim said, was that culture counts, and the report states that the best way to increase cultural competency is not by training people about other cultures but by hiring people of those cultures in organizations. Thus, for example, core values of African Americans would be incorporated into mental health treatment and research by hiring people who are African American and thereby enhancing the workforce. Otherwise, Shim argued, the absence of their perspective on treatment leads to such phenomena as the protest psychosis and people describing militant behavior as schizophrenia when it is not.
Rogers commented that the terminology used to communicate cultural competence also varies. She said she had heard Debbie Plotnik of Mental Health America use the phrase “cultural humility.” Powell added that his organization uses “culturally congruent” because it needs to be congruent with all populations it serves, including a large Latino population. Jordan added that he comes from an era when “minority affairs” was a substitute for what is now called “cultural competency.” Regardless of the term, he said, social inclusion is the core value that needs to be acted upon.
An audience member raised the question of how to involve African American males, for example, many of whom have had experience with the criminal justice system, may have substance abuse disorder, and may have mental health issues. Jordan commented that from a cultural perspective, it is people of color who are most affected by the criminal justice system, and generally, individuals with behavioral health challenges and lacking employment. This combination requires concerted efforts aimed at systems change to remove barriers to full social inclusion. Rogers referred to a new organization called Just Leadership USA, started by Glenn E. Martin, who spent 6 years in prison. She explained that its mission is to cut incarceration in half by 2030 while at the same time reducing crime. She asserted that people need to know about and promote such organizations that include
individuals who have been in prison and are now working for social justice and systems change.
Powell expressed his view that the largest health resource in the country is people in recovery and their family members. They are hidden and often in churches, he said. He underscored the importance of this point because today, he said, there are more African American men in prison than in the nation’s history. It is also important to know, he observed, that a great deal of work in this area is ongoing. His organization works with the courts, judges, parole officers, and probation officers and in jails and prisons. In prisons, he explained, it is doing peer counselor training. Prisoners can earn a certificate and must work 500 hours at a recovery community center. The goal, Powell said, is to engage them, let them know there is an option in recovery and health, and help them get as healthy as possible. Shim made a final point, asserting that society must make a decision to stop criminalizing serious mental illness and substance use problems and sending people with these conditions into the criminal justice system.