Recovery Paradigm Project

And Recovery Paradigm Project Forum Participants:

Andrea Blanch
Cherie Bledsoe-Boykin
Sally Clay
Kathryn Cohan
Mary Ellen Copeland
Nancy Davis
Patricia Deegan
Zahirah Duvall
Courtenay Harding
Dori Hutchinson
Edward Knight
Jay Mahler
Charles Rapp
Karen Suddath
Patrick Sullivan
Stacy Tupper

University of Kansas School of Social Welfare

June, 1999

Unfortunately, mental health settings often lack such characteristics and hold people back from recovery and from experiencing their own potential. If we want people to recover, we must be provide settings with characteristics that are known to promote natural self-righting processes.

Dr. Courtenay Harding discussed the empirical evidence of recovery. She presented major findings from many longitudinal studies of people with psychiatric disabilities conducted around the world. Research findings consistently demonstrate many, even most people recover significantly from prolonged psychiatric disability over time.

Given strong evidence-based research, why do many mental health professionals continue to provide consumers and families with negative messages about their potential for recovery? Harding described how inaccurate historical assumptions are repeated in contemporary clinical education. Such messages are embedded in the process of socializing clinicians into a chronicity paradigm. Lack of attention to recovery also occurs due to truncated diagnostic assessments, inadequate care (e.g. a 15 minute med check once a month now take the place of a therapeutic relationship), researcher bias and clinician illusion, and other factors.

Dr. Harding described psychiatric disorder as a dynamic process that interfaces with human development trajectories, gender, changes in treatment and social systems, and characteristics of program environments. Sometimes recovery just takes time, but turn-around often begins within several years of onset of major disorders.

She expressed frustration with the fact that we have known what to do to assist people to recover for more than forty years. Based on evidence from early rehabilitation research, programs that have certain characteristics pay off with lots of recovery across many domains. These features include:

Such programming has been shown to help even those with prolonged and severe disorders (e.g. ‘back ward’ ‘low functioning’ institutionalized patients who did not respond to drugs) to recover. Dr. Harding’s research indicates that life-long use of psychiatric medications does not appear to be required for recovery. Some people who use medications consistently do not recover while others do, some people who use meds at some points in time recover, and many who take no meds also recover.

These findings lead to a discussion of meds in general. Some members of the expert panel stated emphatically that they will take psychiatric medication every day for the rest of their lives in order to avoid the potential for disruptive return to psychosis, and would never attempt to talk any other person off medication. Others on the panel view heavy medication as a major impediment to recovery. Some take no meds even when temporarily experiencing extreme mental states, others essentially take low dose meds and control their own dosage based on their self-assessed needs.

Later in the meeting meds were described as a tool for recovery, but only one among a number of tools to control symptoms. If other tools were made available there would be less reliance on drugs, especially rampant polypharmacy, and less pressure from drug companies that influence programs and clinical practice so profoundly. Systems would also have formal assistance for people to appropriately come off medication that can cause devastating side effects.

Harding pointed out that approaches to mind-body healing that acknowledge the importance of spirituality, understand brain function is malleable, acknowledge that the mind can affect brain and body functioning, and accept the healing function of hope are being integrated in other aspects of the health care system. Ironically, the mental health field has fallen behind.

The group turned their attention to the first domain of recovery: "Recovery is Recapturing a Positive Sense of Self in Spite of the Challenge of Psychiatric Disability."

Dr. Deegan discussed the first element: "The Journey from Resignation to Hope." Her paper used the metaphor of the seasons to explore recovery processes and the importance of hope.

Deegan asked the group to consider what people are recovering from. She challenged people to move beyond the idea of biological determinism to look at larger issues. If there were no external social conditions such as poverty, racism, alcoholism, childhood abuse, homophobia, just how much mental illness would there really be? She encouraged people to view recovery not simply as a personal process but as a larger human struggle for liberation, social justice and humanity. Bledsoe-Boykin described the difficulty of attaining or maintaining hope or a sense that one may have a positive future while living in a community severely impacted by poverty, crime and racism. Deegan challenged the group to learn more about how diversity can shape recovery. Some people, cultures and subcultures will experience very different recovery processes, for example, because not every group idealizes individuality, autonomy and self-sufficiency.

Deegan and others discussed the mystery of recovery. There are many unanswered questions, such as why some people get better, why others’ suffering worsens, and why people remain in extreme mental states or suffer prolonged disability despite their wish for and work toward healing. Recovery and healing are processes that should be treated with wonder and awe. What if recovery is a matter of grace, an undeserved kindness? What if people sometimes recover in spite of everything rather than because of anything?

While some people seem to return to a former state and reconstitute their former life after psychiatric disability, this seems uncommon. Recovery often does not mean a return to a former state but real transformation. Some people become greater in this process. While none would wish any other person the experience of prolonged psychiatric disability, most honor the transformation that happened in their own lives through their suffering and struggle.

To achieve recovery we will must critically examine the structures and processes in the mental health system that dehumanize people, such as the intense negative experience of restraint, involuntary treatment and forced medication. These Deegan characterized as ‘macro-aggressions’ that break the human spirit. Others concurred that it can be more difficult to recover from unnecessary wounding, abuse and trauma within the mental health system than from the psychiatric disorder itself.

Deegan asked people to consider the impact of ‘mentalism,’ a term first coined in the 1960s as analogous to oppressive processes of racism and sexism. Mentalism sets up internalized images from the culture through embedded social processes, such as media and language, that allow people to hold a host of institutionalized negative attitudes and assumptions and to view someone with a psychiatric label as less than human. Mentalism results in hundreds of ‘micro-aggressions’ that serve to oppress people with psychiatric labels and strip them of hope. Those who challenge mentalism, whether they are people who are oppressed or those in solidarity with them, are marginalized.

Blanch stated that it is often professionals and systems that need to recover, not mental health consumers. Staff often perpetrate and put up with micro-aggressions and refuse to connect with others as real human beings, while consumers will often challenge such practices or refuse to participate in oppressive programs.

Deegan sees recovery as an active verb and not a noun. Just what processes are occurring within the overall recovery journey? For example, is there a shift in internal self-talk that occurs in recovery? What types of recovery narratives exist that may represent different recovery processes? How does turn-around happen and how is it different for different people? What is the state before active recovery we characterize as inertia—what is that experience about?

The group discussed inertia and meaninglessness. Are we setting up people who are in such a state, and who may remain in such a state for some time, to be seen as less worthy than those who are actively recovering? Are we potentially harming people by devising a recovery paradigm that emphasizes only the movement away from such a state? We must honor people as they experience this part of the human condition.

People often endure a period of deep inertia, alienation, abject meaninglessness or profound lack of vital energy prior to recovery. This was true for almost all the consumers in the meeting. People must be supported during such a period, and held in relationship. But it is very scary to be in the presence of anguish and suffering and maintain an I-Thou presence. At a time when people need the support of others deeply, we often isolate them. Kathryn Cohan warned the group not to suffer ‘hardening if the categories.’ For years she ‘lay fallow’ but that time was important in her life. Opportunity arises out of what appears to be a tragedy.

What does that state of inertia really represent? Some people are grieving what they have lost in their life. Some are without hope and feeling helpless to act on their own behalf, they feel the utter lack of possibilities or fear they will crack up again under too much stress. Some people are resting and recuperating because they are exhausted after the firestorm of psychosis. Some are gathering their energy, or rehearsing or planning their recovery within themselves—they are ‘beginning to get ready to start.’ Some are on heavy drugs that make it nearly impossible to function. Some are watching to see whether they are safe or truly cared for, or they are hiding behind a mask of passivity because recovery is very scary. Some are using passive resistance in situations that are invasive, inane or paternalistic. Sometimes they are stunned and traumatized because of treatment they have received, and may be afraid to open themselves to anything or anyone because of the potential for re-traumatization. They may have suffered at the hands of people in authority who hurt and abused them in the past. Sometimes people are active in their community, but plop themselves in a ‘coke and smoke’ mode in mental health programs. Often boring programs put people into a kind of suspended animation. Sometimes vital energy is completely blocked and a person truly can not even force him or herself to do even a simple activities.

No one can be written off in such a state, because turn-around, awakening, and transformation remain possible. People have recovered from such a state even after thirty years of extreme psychiatric disability. Several participants described what their lives were like when they were in such a state (e.g. rocking, smoking, staring at television or staying in bed for months and years or being the quintessential bizarre, scary homeless person on the street). Now people say to them "recovery may be all right for you, but you aren’t sick like my patients, clients, child."

The group discussed how hope may be engendered. Hope often comes in the form of relationships. The rupture of community, social isolation, being set outside the society, being judged negatively because one does not work, being seen as worthless, the experience of loosing everything (relationships, jobs, cars, possessions) repeatedly, the lack of supports available, and grinding poverty make people despair. At points when people feels hopeless, others must hold hope for them. Hope arises in the presence of nurturing, honest, authentic relationships. Positive peer role models are very important, because consumers can see and really understand that others have ‘been there and back.’ When consumers move out of self-absorption, awaken compassion for others and begin helping their peers, hope grows. Where there are positive role models change and hope become contagious.

Authentic relationships between staff and consumers also engender hope. We really know very little about mental illness and staff need to admit their ignorance and powerlessness, accept people’s feeling and not meet human feelings with a false façade (what Knight called phony ‘WalMart helloism’), inaccessible language, intellectual abstractions, or a standardized treatment protocol. Inauthentic, paternalistic, and unequal power relationships, artificial professional boundaries, low staffing ratios, pseudo-human exchange of ‘active listening,’ keep people feeling estranged and hopeless. We must be able to say when people walk into programs "We have a tremendous hope for you to recover and have a good life." Healing relationships are two-way, with each person disclosing his or her own humanity, each person learning from the other.

Power imbalances in programs need to be leveled so that people can work together in partnership. People are often labeled as ‘manipulative,’ ‘in denial’ or ‘grandiose’ when they are trying to contend with getting their needs met or protecting themselves from profoundly negative messages. Consumers must play important roles in shaping their treatment plan, agency programs and policy. Knight recommended that there be no more programs in which consumers get to pick the video or choose between macaroni and cheese or hot dogs and staff decide everything else.

The group discussed how important it is for the mental health system not to kill, crush, or rub out peoples’ dreams. Programs often actively strip people of hope. Deegan would not tell her psychiatrist her dream of becoming a professional in order to change the mental health system. She knew her goal was unacceptable and would not fit his prediction that she would be disabled for life. Ed Knight and Mary Ellen Copeland had dreams of assisting others to recover through self-help, but were told by mental health professionals that they were experiencing grandiose delusions. One psychiatrist told Knight, in a hush-hush closed-door exchange, not to give up his ‘delusions’ about self-help because they actually represented his life goals. Dr. Knight has facilitated the formation of several hundred self-help groups and developed extensive self-help materials. Mary Ellen Copeland challenged the idea that people can not actively assist in their own recovery. She researched symptom self-management techniques and wellness with help from Vocational Rehabilitation. Copeland has authored or co-authored several books, one of which has sold over a quarter of a million copies and she now conducts training around the country.

People need to be helped to explore their dreams and goals. People have to take risks to recover and must not be told to avoid acting or living their dreams to avoid stress or symptoms. When people are stabilized, clinicians often actively discourage movement into recovery because they are afraid the stress of forming relationships or working will create a crisis and the return of active disorder. Recovery can be scary, but it is a contagious process. Helping people identify and use their strengths is also very important in this process.

Sally Clay used part of her life story "Me and Them" to illustrate the element of recovery that concerns "The Journey from Alienation to Meaning and Purpose." She discussed her attempts to stop ‘mad’ thoughts, and the need to accept ones’ fears and have support while doing so, rather than suffer the abuse and institutionalization that occurred in her life. She spoke of trying to fit into the role of housewife and the dominant culture, but loosing her marriage and spending many months institutionalized because of manic episodes and subsequent inactive states. She experienced shock treatment that left her with gaps in her memory that broke the continuity in her life story, and took heavy medications that dulled her intellect and emotions.

Clay found renewed meaning in motherhood, acts of nurturing and joyful activities with her child, yet she lost custody based on the stigma of her disorder and the shock treatments she had received. Employment helped her to reclaim meaning, structure her days and build self-esteem. She described the stigma she experienced as a kind of marking of the soul.

Clay’s psychotic experiences always contained seeds of deep spirituality—the profound emptiness she experienced while institutionalized had a spiritual quality, and visionary or wisdom experiences were part of her recurrent psychotic episodes. Mental health professionals totally invalidated her experience, continuously discounted them and denied that there could be any positive or spiritual purpose for them. Nevertheless Clay was seduced by some of the qualities of ‘madness’. She learned she could evoke wild qualities of mind with alcohol and music.

A turning point, the awakening of compassion for others that occurred in a seemingly small incident at work, had deep implications for her life. She had considered herself a breed apart, but the seeds of compassion helped heal this profound estrangement. Later in her life she learned through spiritual practices to control her mental processes, and no longer suffered psychotic breaks. She was directed by a spiritual teacher to undertake acts of compassion for others, and redoubled her efforts to lead others in self-help. Her madness was her teacher, and she found other teachers, including other consumers. She discovered her spirituality could have a mundane face, and that compassion for humanity and helping others, through the vehicle of peer support, healed alienation. The fruits of her spiritual learning took time to ripen.

Kathryn Cohan examined the element of the "Journey from Mental Patient to Positive Identity Beyond the Label." In researching her paper she found that there were no models or concepts of human development after the experience of psychiatric disability. It is as though people had arrested development, their lives stopped, they disappeared or their life process was aborted and they entered a kind of limbo. The culture is actively hostile to people with labeled identities. People are viewed as ‘useless eaters’ or social liabilities. Measured against the yardstick of normalcy they are found lacking. We suffer from the cult of rationality and disallow much of the range of human experience. People with psychiatric labels experience profound shame, stigma and discrimination. These labels warp people into objects.

One can achieve a kind of acceptable status by being ‘a good patient’ or one may be allowed limited controlled social participation or may perform tasks that are undesirable to others. Yet people awaken out of this state, rally against it or experience a turning point after ‘hitting bottom’ and go on to experience transformation. Cohan found herself failing at being a good patient, because traditional treatment did not result in remission. She found a little solace in being considered one of the sickest people in her state. She found she could not reject her disorder, but rather had to embrace and befriend it, learn from it, deal with her life and relationships day to day even while experiencing symptoms, and take responsibility for healing her self, with the help of trusted others. She found wisdom can come from attending to ones own suffering.

What can the system do to help people achieve meaning and a positive sense of identity? Knight pointed out that meaning may not be achieved at turnaround, but rather develops as the recovery journey progresses. You have to attain meaning by doing meaningful things. He started out on his recovery journey in a state of alienation and intense meaninglessness, simply by putting one step in front of the other. On the other hand, meaning should be considered as important as other basic needs. Questions of meaning cannot wait until people have attained a certain level on Maslow’s hierarchy of needs. Meaning is just as important to a human being as housing or food. The group felt recovery required dropping labels, and contending with phenomena directly, rather than invalidating people’s experiences and trying to constantly to reject, counter or bury them. Systems and helpers should always use ‘person first’ language to acknowledge the disability is not as important as the person’s individuality and humanity.

Developing a sense of humor is important when living with mental disorder—Kathryn queried "how about a manic cleaning service or an ad agency that employs schizophrenics to come up with novel ideas?" Spirituality and spiritual practices can keep people from despair and suicide, but Duvall pointed out, we must avoid "forced meditation" in programs just as much as "forced medication." People need roles, niches, and positive places to get better.

Many people are finding that working in mental health is an important part of recovery because they can give back. Reciprocal relationships and self-help provide opportunities for giving and compassion, but people seldom have the opportunity to undertake self-help, and are often actively restrained from sharing with one another.

The Kansas Recovery Breakfast

A number of people attended a breakfast meeting on the day after the Recovery Paradigm Project Meeting. The purpose of the breakfast was to discuss reactions to the recovery experts forum, to gain input about next steps in recovery for Kansas, and to kick off a year-long effort to create a recovery-orientation across the State.

Director of Mental Health Karen Suddath led off the discussion with her own reactions and areas of interest. These included an interest in pursuing the concept of mentalism and how it plays out in local agencies and in state government, as well as how spirit-breaking practices can be identified and changed. We need to examine bigger social problems and their effect on the process of recovery. One person offered that mentalism is not examining our own assumptions.

Suddath was very interested in the whole process of recovery and the idea that people become motivated to recover in their own time. She pointed out we only have active treatment plans, and asked whether we should push people into activity all the time and never give them the opportunity to rest. She asked whether we sufficiently understand and account for the effects and side effects of medications or processes such as ‘woodshedding’ (periods in which people are practicing and getting ready for change); and whether we leave room in all our activity for the mystery of recovery. Do we allow people to "bottom out" or stay in inertia, and how does this fit with the idea of assertive outreach? She questioned the use of forced treatment and wondered if early intervention could be misused and actually act to create labeled identities. What would happen if we used normalizing terms like ‘extreme states’ or dropped all labels?

Several people described the recovery paradigm meeting as profound, eye-opening, even life-altering. Many felt honored to have been included. The group discussed the idea that people can have well-being and illness side by side in their life. It is difficult to judge another’s process. What would happen if staff stopped trying to manage illnesses and began helping people manage their own wellness?

Some people felt the spiritual aspects of the recovery journey were very important and some felt it could be very challenging. In some ways we have to start listening to the other person heart-to-heart instead of having head-to-head discussions. We have to begin to pay attention to the mind, body, and soul. Moving toward more authentic relationships is important but power imbalances cannot simply be wished away. Staff must have good supervision and open discussions when mores are changing.

Kansas lacks a really strong consumer movement, and a recovery orientation emphasizes self-help. Consumers need adequate rewards, more technical assistance and leadership development. More consumers need to serve on the boards of agencies, so that this legal requirement isn’t simply tokenism. Consumer-run organizations need greater resources and more should be established.

The importance of hope and the role consumer providers can play in building hope was emphasized. The work going on to train and hire consumer-providers is very important because it helps people see they can recover and achieve the identity of helper. Even when a consumer-provider goes through a rough period, other consumers can see the person weather the episode and return to work. Some ethical, legal, licensing and practical issues remain to be resolved. Mahler offered to provide information on resolving ethical issues such as dual relationship, because California has dealt with such issues of hiring consumer providers for nearly ten years. We should speed up the learning curve and learn from others systems who have had consumer-providers for years, to resolve these conflicts as quickly as possible. Some felt issues such as dual relationships are being thrown up as artificial roadblocks by agencies that just do not want to embrace change.

Sometimes programs want to protect people from being hurt, but this stops them from growing. We can not protect people by wrapping them up in cotton. There is the potential in any human relationship (including between staff and consumer) of being hurt, but people can open to relationship, experience joy and pain and grow.

An emphasis needs to be placed on facilitating natural ways for people to get help, rather than putting people in a protective bubble. We need to work on developing natural community supports and community mental health. Artificial programs can get in the way of recovery. Some times the ‘cure is worse than the disease.’ We need to look at the environments of programs and how they promote mentalism and socialize people into ‘good patient’ behavior. We may need to change the word consumer because it implies a one way relationship.

Recovery should be seen not as a program but as the need to change our perspective, our world-view and treat the whole person. We need to share this vision because it is more creative and freeing. We need to understand that each person has many gifts, a story and a unique recovery journey and begin to support people in this process.

Kansas needs to build on its strengths and history. We don’t have as many ‘evil empire’ programs to be dismantled. There is new statewide leadership to help put the vision of recovery forward. We need to build toward recovery by investing in consumers, involving families, consumers, the legislature and governors office, CMHC’s, KU and outside people to move the system into a recovery orientation.

The following activities were suggested at the breakfast and in follow-up discussions.

Create a Strong Vision of Recovery