There was a great disturbance in the force last week. Bill Anthony, founder and longstanding executive director of the Boston University Center for Psychiatric Rehabilitation, founding board member for the Foundation for Excellence in Mental Health Care, and recipient of the Distinguished Service Award from the President of the United States died at age 77. I would imagine that a man of his grace and thoughtfulness touched many people in many ways, but I, like so many others, know him for his work in psychiatric rehabilitation and recovery.
I feel like a giant upon whose shoulders I have been standing is gone.
The first time I met Bill was in 1991, when he came to the Village when it was barely a year old to write about Martha Long’s leadership style. He was working on a book about leadership. I was just a couple years out of residency, and he was already the legendary “father of psychiatric rehabilitation.”
The first paragraph in my book “A Road to Recovery” tells the story: “In 1991, when Bill Anthony, Ph.D., a well-known leader in psychiatric rehabilitation from Boston University, came to visit the Village, I asked him what he thought the next big movement in mental health was going to be. He answered “recovery,” and I nearly fell off my chair. At the time, we were only one year into building the Village. I had just begun thinking about recovery and it still seemed too extreme to ever become acceptable.”
Recovery has always been an “outsider movement” that has drawn many rebels. Years ago, I created a PowerPoint slide that listed among our ranks:
- People with mental illnesses – “consumers” – fighting for themselves and helping each other
- People with experience with the 12 step-recovery movement, wanting to integrate mental health and substance abuse recovery
- Psychosocial rehabilitation and psychiatric rehabilitation programs
- Civil rights advocates
- People who don’t like following the rules and are naturally pragmatic rebels
- People who prioritize trauma over illnesses and want to focus on trauma recovery
- Staff who came to mental health for personal reasons who are “abnormal in a certain, special way so our hearts go out to people normal people would avoid,” who want to connect to their clients authentically and reciprocally rather than reduce them to cases
- People who heavily value cultural contexts, understandings, and services
- People who are “doing God’s work” and find spirituality to be forcibly excluded from our current system
Bill was a leader of the rehabilitation contingent, which included many of my coworkers at the Village and our collaborators.
From my viewpoint in California, his contributions spread across a range of options for promoting recovery we would all do well to emulate, including:
- From early on, with Judi Chamberlin, he collaborated meaningfully with people with lived experience, profoundly valuing them.
- He insisted that people with mental conditions, even with ongoing symptoms, instead of being marginalized, deserved the chance for rehabilitation, to return to school and work, just like people with physical conditions.
- The “choose, get, keep,” model for supported employment services literally begins with client choice.
- They put together training manuals, lessons, and textbooks for rehabilitation practice, giving it the consistency and accountability needed to push for CPRP licensing and compete for official reimbursement.
- For years, he edited the Psychiatric Rehabilitation journal creating a place for person-centered rehabilitation and recovery research, techniques, and scholarly interchange to compete with the biologically dominated professional journals.
- He committed early and fully to the recovery model as an organizing set of values for the entire mental health system, carrying it to the highest levels of government.
- The Foundation for Excellence in Mental Health Care is developing credible alternatives to the pharmaceutical company dominated treatment narratives.
The last time I met him was about 15 years ago when we were both members of SAMHSA’s Partners for Recovery Advisory Board. He was working to connect us with the contingent from substance abuse treatment and prevention. He was building bridges and creating allies. I also learned then that he had late-onset multiple sclerosis, which may have explained why he’d been championing taking naps.
I admired most that he was not the “easy” kind of rebel, who fans anger and destruction while building very little. His strength was in using our recovery values to build concrete practices, programs, training material, even administrative structures. I have his article, “Implementing Recovery Oriented Evidence Based Programs: Identifying the Critical Dimensions” from the Community Mental Health Journal on my computer and used it to build my “Recovery Culture Progress Report.” He knew how to implement our values.
But, despite his efforts, the recovery values haven’t become embedded in standard practice.
While I, unlike many others, don’t consider the current “medical model empire” to be an evil empire, I do think that it is widely repressive. People choose to work in mental health because we want to help people, to share their struggles, and because our heart goes out to them because of who we are, reflecting both our gifts and wounds. But the “medical model empire” represses our “hearts” by insisting on professional distance, scientific objectivity, and dehumanizing reductionism. People choose to work in mental health because we are awed and fascinated by the mind and all its variations. But the “medical model empire” represses our “minds” by limiting our understanding to reductionistic descriptions of brain circuitry, simplistic diagnostic categories without causes, and generic treatment algorithms. People choose to work in mental health because we think we can make a difference in people’s lives by using our personal talents and experience to help others. But the “medical model empire” represses our “hands” by being almost entirely medication-focused and only funding illness-centered services delivered by indoctrinated professional staff using their insider-approved, “evidence-based” practices.
The medical-model empire remains very strong. It controls all the academic centers, the research and publications, the public education and advocacy organizations (including NAMI, MHA, and the National Council for Behavioral Health), the media’s mental health narrative, and, of course, the DSM 5. They have two formidable sources of power:
- Massive funding from pharmaceutical companies who, by federal law, can only promote their medications within a medical, illness-centered model. They heavily promote it to sell more and more pills. Pharmaceutical companies directly or indirectly fund and influence everyone, promoting the medical model.
- All insurance, private and public, including Medicare and Medicaid, who pay for mental health care, are medical model based. The require psychiatric diagnoses, “medical necessity” for treatment, and “evidence-based” treatment directed at relieving that illness. These requirements funnel all the treatment money into medical model services, starving more holistic approaches.
I don’t know if Bill would have agreed with my formulations, but it seems to me that he was unsuccessful in diverting either of those funding and power sources into recovery and rehabilitation. Two of his most compelling assertions, “Recovery can occur even though symptoms reoccur” and “Recovery from the consequences of the illness is sometimes more difficult than recovering from the illness itself,” are still rebellious assertions, limited in their power because they’re starved of funds.
The four values underlying his Recovery Oriented Mental Health Systems – person orientation, person involvement, self-determination/choice, and growth potential – give us a compass for “value-based practice” that is still widely repressed.
It’s up to all of us to carry on the rebellion even though the force has been diminished by his death, even though we’re still outsider rebels. We can still do it by applying his value-based compass to our various efforts:
- Education and advocacy organizations can adapt illness-centered, professionally-driven programs like Mental Health First Aid and QPR suicide prevention to include those four values, and favor programs like emotional-CPR that already embody recovery values. What if we created ads that said, “If your antidepressant is only partially working, there’s a lot more you can do to recover besides adding an antipsychotic medication”?
- DSM could be pressured to replace increasingly broad diagnostic labels, especially bipolar and ADHD, with meaningful, individualized formulations, focusing on what happens to people instead of what’s wrong with them, and the growth they can aspire to. What if we put “developmental trauma disorder” in the DSM? What if “grief” – not “pathological grief” or major depression” or “adjustment disorder” – but normal, devastating, potentially life-threatening grief was included? What if “gender dysphoria” was replaced with the desire to be whole?
- Pharmaceutical research protocols could replace paying people to be in rigid dosing protocols measuring symptom response outcomes with surveys with engaging people to use medications to fit their goals and needs, and measure their ability to exploit the medications to resume growth and get off the meds. What if instead of trying to eliminate and “control for” placebo effects and side effects, which are the actions of the person’s mind working with and against the medications, they studied enhancing placebo effects and decreasing side effects?
- Training programs could focus on person-focused, growth-oriented practices (like Carl Rogers’ person-centered therapy or narrative therapy) and relationship building (like open dialogue and non-violent communication) instead of on short-term coping skills. Prescribing training could emphasize engagement, goal-driven, client-driven, shared decision making, resilience building skills.
- Service payment and auditing could be focused on the person, their relationships, and their growth to interdependence rather than on illness reduction. What if engagement, empowerment, collaboration, and graduation from services were paid for?
- Public health prevention and early intervention approaches could be moved from looking for early genetic vulnerability, diagnosis, and proactive medication treatment to building protective factors, relationships, and resilience. What if we really focused on prevention of childhood abuse, strengthening families, increasing attachment and mirroring, and developing people’s self-identities? What if we focused on relationships and community building? What if we focused on enhancing connection to our bodies, to nature, to spirituality?
Bills’ death can give us a moment to stop and reflect upon where we’ve been, the current state of the recovery movement he fought so long and hard for, and what we can still fight for. Despite his efforts we’re still a disparate group of rebels facing a powerful, repressive empire.
Mad in America hosts blogs by a diverse group of writers. These posts are designed to serve as a public forum for a discussion—broadly speaking—of psychiatry and its treatments. The opinions expressed are the writers’ own.