From outsiders to insiders: The consumer-survivor movement and its impact on U.S. mental health policy

This chapter represents an attempt to think more systematically and critically about the "patient factor" in policy making by focusing on a particularly important example of change: The impact of the patient empowerment movement on the mental health field. Since the 1970s, so-called consumer-survivors have gained new visibility as expert patients whose voices matter in policy decision making. Although breast cancer and AIDS activism are better known examples of powerful advocacy, the consumer-survivor movement has arguably had as great a policy influence. At first glance, this influence seems hard to explain. People with severe mental disorders hardly conform to the definition of a powerful interest group: They suffer from a highly stigmatized disability, often have critical views of health care professionals who might otherwise be their allies, and depend on a fragile network of social services in order to maintain their independence. Yet despite these disadvantages, consumer-survivors have played a key role in spearheading the therapeutic emphasis on recovery and rehabilitation now dominant in the mental health field. Today, for example, consumer-survivors sit on state mental health councils, work for mental health agencies, and serve on treatment policy committees.1 By taking an explicitly historical approach to the subject, this chapter shows how consumer-survivor groups benefited from important trends that originated outside the mental health field, including the consumer health revolution and the disability rights movement. I also relate their growing influence to the travails of institutional psychiatry and public mental health policy over the past half century. Consumer-survivor advocates emerged in the aftermath of deinstitutionalization, an example of disastrous policy implementation that placed a premium on low-cost fixes to a system in crisis. In the midst of this brutal downsizing, patient voices gained a hearing that in more prosperous, settled times had been denied them. The history of the consumer-survivor movement suggests a more general model for explaining the ebb and flow of the "patient factor" in health care policy as an interaction between therapeutic and economic imperatives. To be sure, such generalizing has to be done carefully. The extent of downsizing in institutional psychiatry has few counterparts in the history of U.S. health care. But this case study provides some insight into the seeming paradox that serious efforts at cost containment often require greater attention to patient concerns and priorities. In what follows, I use the term "consumer-survivor" to describe my subjects, fully aware that it carries a heavy load of historical baggage. Changing views of health care rights have prompted many attempts to replace the word "patient" with a better term to describe that role. In the mental health field, this quest has been a particularly long and painful one. Trying to alleviate the stigma associated with madness, nineteenth-century reformers replaced the term "lunatic" with "insanity"; a generation later, for the same reasons, "insanity" was replaced by "mental illness." More recently, the term "biologically based mental illness" has emerged as part of an effort to break down what advocates see as an invalid and harmful distinction between mental and physical disease. Starting with the upheavals of the 1960s, activists rejected the term "patient," which they felt was irredeemably tainted with medical paternalism, and tried out terms such as "survivor," "consumer," and "client." Ideological battles over terminology continue to this day, for reasons I explore in this chapter. Meanwhile, most people served by the mental health specialty sector still refer to themselves as "patients" rather than as "consumers" or "survivors." Nonetheless, the term "consumer-survivor" has gained wide usage in the mental health field, so I have chosen to use it here.2.