A Family Advocate's Reply : Why Consumers and Family Advocates Must Work Together

One of the things that the 1990s will surely be remembered for, in terms of U.S. mental health policy, is the growing voice of people with serious brain disorders such as schizophrenia, bipolar disorder, severe depression, and severe anxiety disorders. Consumers are increasingly speaking out, revealing their own stories, advocating for change, and assuming leadership roles in mental health organizations.

The growing strength of the consumer voice is a development to be celebrated. It is the voices of consumers that have contributed so strongly to the push for services aimed at recovery and a high quality of life. It is their voices and stories that are helping to chisel away at the formidable edifice of stigma and discrimination that still casts its shadow on U.S. and world culture. It is their voices that remind us daily that mental illnesses are real and affect real people.

The National Alliance for the Mentally Ill (NAMI) began 20 years ago as a group of parents seeking services, justice, and hope for their adult children with extremely disabling brain disorders. In 1998 NAMI is itself being strengthened by the growing role of consumers. Consumers increasingly are joining family members in NAMI's mission. More than 20 percent of our membership consists of consumers. Nearly half of the state campaign coordinators from our Campaign to End Discrimination are consumers. Four of 16 members of our national board of directors are consumers. At least 25 percent of the staff of NAMI are consumers. Indeed NAMI can fairly claim to be the largest single consumer organization in the country.

A powerful force has been created by consumer and family voices joining together. This advance reflects the success of pioneering consumers, who had the courage to speak out in the face of overwhelming stigma and discrimination. It also reflects, we believe, the significant improvements in treatments that we have witnessed in the last decade, which have made significant recovery a real possibility for ever more consumers. And it builds as well on the success and courage of family members who themselves overcame blame and isolation to put their imprint on the system.

Unfortunately, the courage and success of consumers and their families are too often subsumed by the polarizing misinformation, demagoguery, and outright cynical manipulation of some funding agencies, service providers, and now managed care organizations. The preceding essay embodies much of this negativity.

NAMI, because of its success, is a target of much of this animosity. It is unclear who gains from the tendency to demonize, but it is certain that we all stand to lose much in the time, energy, and credibility expended in the process. It is time for the mental health community—providers, administrators, policymakers, families, and consumers themselves—to end this destructiveness, and for all of us to aim our efforts at reforming the persistent and enormous problems that we all face.

And the problems are enormous. Just recently a large study showed that more than half the time consumers with schizophrenia fail to receive core treatments and services that have been shown to work (1). The study also showed that consumers are over- or undermedicated; that depression and side effects are ignored; and that rehabilitation, family support, and outreach are all but absent

It is also time to stop the broad-brush attacks on families. Although there will always be some family members and others who are not pure in intention or action, most families do not disrespect a loved one who has an illness and disability. Quite the opposite is true. The research literature has shown time and time again that families are the primary care providers for most people who suffer from the severest and most disabling mental illnesses. Most families work harder than anyone, except consumers themselves, for the consumer's optimal recovery and quality of life. Most families are not co-opted by the pharmaceutical and medical industries. Most families do not patronize, stigmatize, or otherwise demean their loved ones. Yet it is not inconsistent with that picture to say that a family suffers the pain of a loved one's illness, even as that loved one makes the journey toward acceptance and hope for recovery.

The time has long since come to end the silly fiction, perpetuated in the accompanying essay, that illnesses such as schizophrenia or bipolar disorder or severe depression can be categorized, with equal accuracy, as simply social disarray. They are real illnesses, and access to treatment for them is critical for consumers' well-being.

We also need to take the harsh reality of the most severe mental illnesses into account. Schizophrenia and bipolar disorder can diminish insight into one's own illness. Hallucinations, delusions, and agitation are prominent symptoms of these brain disorders. When untreated, these disorders can sometimes lead to disruptive and even violent actions. And usually a family member is the victim of such attacks. As a community, families and consumers together must face this sad reality of mental illness. Even as we promote recovery, consumer involvement, and indeed the preeminence of consumer wishes, it does not do any consumer a service to deny illness and treatment. As we well know, such a course leaves too many consumers on the streets, in jails and prisons, or dead.

Our continued infighting as a community of individuals concerned about those with serious brain disorders hampers the effectiveness of our advocacy. And it plays into the hands of managed care organizations, funding agencies, and providers who would rather not invest the resources to provide the best, science-based treatments and services for this population. Too many such organizations shamefully use consumer-survivors as window dressing for policies that are in their own fiscal interest.

There is no question that NAMI's own evolution as a consumer and family organization has not always been easy and is far from complete. Although NAMI has a distance yet to travel in fully integrating the voice of consumers into our organization, it is a challenge that we cherish and will work hard to meet. We believe that we have come a significant way along this road. We have a vision of the future in which consumers and families are no longer divided and conquered, but are a united voice—as are most families—for ending discrimination against people with brain disorders and promoting the best recovery for every person who develops such an illness. Together we shall stand, stronger than ever before.