by Terry DeRocher
This is a presentation given at the National Summit of Mental Health Consumers
and Survivors in Portland, Oregon which took place 8/26 - 29/99.
Recovery is a Process, Not an End was part of the educational panel on the
recovery plank which was a part of the opening of the Summit
Recovery from mental illness is "the personal, unique process of changing ones attitudes, values, skills and roles to maximize functioning. Recovery requires recognition of this fact and movement away from service models built upon medical models: models that focus on identifying, labeling and treating weaknesses rather than upon identifying, building and utilizing strengths. This requires a new perspective. To paraphrase Saul Alinsky, in seeking systemic change, we must start from where the world is, as it is, not as we would like it to be. To do so, we must recognize that the current state of affairs is one in which "the rights of the mentally ill usually begin (and often end) with treatment rights", a vision too narrow and which encourages dependency rather than self-sufficiency.
We must assume responsibility for ourselves and our destinies in order to be empowered. And "empowerment and reconnection are the core experiences of recovery." We experience a profound sense of loss upon being diagnosed with a serious mental illness, one which others find difficult to understand, as it is related to an illness that is stigmatized and one for which many believe there is no hope for recovery. However, recovery is a process in which we must first be allowed to grieve this loss and then to redefine ourselves and our social roles in our own ways. Diagnosis with a mental illness, and acceptance of that diagnosis and all it implies, is a trauma. We must understand, and help those around us to understand, that the grief related to that trauma is not a symptom of our illness. We must also process this trauma, often with a service provider that views this as a normal, healthy grieving process. We can then regain the momentum to pursue the goals which represent recovery.
We are not alone in our attempts to change perspectives from viewing an individuals deficits to identifying and utilizing strengths. The Independent Living movement has fought many of the same battles and made many gains, as passage of the Americans with Disabilities Act (ADA) illustrates. However, these gains are being eroded by the current political climate, perhaps most clearly demonstrated by recent Supreme Court decisions limiting the definitions of "disability" relative to ADA protection. These rulings reflect the feeling of many non-disabled workers that accommodations are a "privilege rather than a right", sometimes causing jealousy, resentfulness and other negative feelings and behaviors toward workers with disabilities.
Such reactions are grounded in misunderstanding on the part of the non-disabled. Not sharing our experience, nor understanding it, they also fail to understand that "equality of opportunity does not mean that everyone can use, or benefit from, the same opportunities. . . . Nor will identical opportunities produce the same outcomes for different individuals" (Scarr, 1996, p. 204). The erosion of earlier gains make it imperative that we collaborate with others in pursuit of common goals and interests. Such collaborations are often not as easy as might be expected. Many of us have dealt with situations in which those with physical disabilities are just as likely as the non-disabled to fail to accept that an "invisible disability" is no less real than a visible one. Worse, many are just as likely as the non-disabled to view us with fear and prejudice.
A woman with schizophrenia tells a story of working with a woman who used a wheelchair. After listening to the challenges faced by this co-worker, she shared some of her own challenges in dealing with a mental illness. The result was blatant rejection, rather than a recognition of their common struggles. In order to effectively form alliances, we must help those with different disabilities to see our commonalties, and to see that we share common experiences, as all "people react strictly on the basis of their own experience".
In creating or joining a culture that shares the common experience of the label "disabled", we also prepare ourselves to handle discrimination inside and outside of the service delivery system, an important task. Discrimination inside the service system challenges our recovery. Problems in communication interfere with our ability to voice our preferences and needs, especially when accommodations are not made for differences in communication styles and abilities. Providers also bring their own issues into service delivery. For example, issues surrounding sexuality, reproduction and sexual health are often particularly problematic. As a result, health care information often is not available in a useful, respectful format. Perhaps partly as a result of this, providers and customers identify different barriers to successful recovery.
Customers identify environmental barriers - problems in the work and social worlds; providers focus on deficits in customer skills and abilities. This focus may reflect the efforts of providers to identify services which will be reimbursed by managed care. Managed care, in turn, continues to reflect a medical model of mental illnesses. The medical model continues to dominate treatment, encouraging a passive customer role in service planning and delivery. Mechanisms are in place in some systems to allow us input into service planning and delivery, and to address grievances when this does not occur. We must insist that these mechanisms be clearly defined and represent fully functional systems of redress. Some professional organizations are beginning to recognize the need for customer participation. For example, the International Association of Psychosocial Rehabilitation Services clearly spells out the need for customer input. These guidelines state that "the most effective representation of consumer issues will always come from consumers themselves". Centers for Independent Living (CILs), mandated to be customer-driven and to have governing boards composed of at least 51% individuals with disabilities, provide another avenue of participation.
As we struggle to change our own beliefs about our possibilities, as well as those of the people we hire to assist us through the provision of services, we must define the resources which will allow us to engage in recovery. Some needs have been identified in research in which customers of services participated. Such research, when properly executed, is a valuable tool in communicating our needs to those in positions of influence and who are able to address those needs. We have to be able to communicate to policy makers a clear description of "where the world is if we are going to change it to what we think it should be", and, as Alinsky observed, "that means working in the system".
We need to be active, and sometimes aggressive, participants in the planning of our own recoveries and in making certain that those who serve us coordinate their efforts to meet our needs. As many of us are seen first and foremost as individuals with psychiatric needs, rather than as total persons, coordinating services to meet our vocational, educational, employment and health care needs with those intended to meet our mental health service needs is crucial. To address these needs is to allow us the same opportunities for a well-rounded life as those enjoyed by the non-disabled. Our needs are related to the very core of what recovery means: "Recovery offers the promise of managing ones illness and moving ahead with ones life. For most . . . moving ahead includes employment".
In one study, financial and employment barriers were rated as the largest obstacles to success, followed by the availability of vocational and other community resources. A study of those with mental illnesses who do successfully maintain employment pinpoints many of these resources, including transportation and support from service providers. Tansportation is a key issue, particularly in rural areas where public transportation is often unavailable or grossly inadequate.
In order to fully participate in our communities, it is also imperative that our health care needs be addressed in a manner that recognizes that they are often different and/or more severe than are the needs of those without mental illnesses. As a community, our rates of undiagnosed and/or untreated medical disorders are quite high, as are our related fatalities. We face some difficulty in obtaining this care, as our mental health service providers, often designated as our "case managers" and therefore responsible for linking and coordinating our services, are also often poorly equipped to address our special health needs.
There is a very common stereotype of those with disabilities, including those with psychiatric disabilities, as being asexual, a stereotype which now not only threatens our recovery from mental illnesses, but which threatens our very lives. Recent research tells us that "people with mental illness have emerged as a population . . . already experiencing very high rates of new HIV infections . . . and that people with mental illness in large urban areas constitute a population segment highly vulnerable to HIV infection". Some steps are being taken through risk assessment research and program design to begin to address "the growing incidence of HIV infection among" those with mental illnesses, but this represents only one of our many health concerns.
Recovery from mental illness must include assuming personal responsibility for ones future, on an individual level as well as on a community level. This is what my own, and my daughters, recovery has demanded - that we work toward full participation in our community and in the design of services for us and others who share our issues and needs. As a community, we need to utilize this summit to share our efforts and experiences, successful and otherwise, with each other and begin to build a plan to support our recovery. It is my hope that we are ready to assume this responsibility as a community, as it will require radical change on many levels. As Alinsky said, revolutionary change, which is what we seek, can only begin with people who "feel so frustrated, so defeated, so lost, so futureless in the prevailing system that they are willing to let go of the past and chance the future".