Frederick J. Frese, PhD, received a diagnosis of paranoid schizophrenia at age 25 and spent months in psychiatric hospitals. At one point, a young psychologist told him, "If it weren't for your illness, you could have become a professional." That's a classic example of how people with serious mental illness (SMI) are discouraged into believing they cannot recover and will never lead productive lives, Frese says.
Motivated to prove the psychologist wrong, Frese left the hospital, secured employment with the Ohio Department of Mental Health, earned master's and doctoral degrees in psychology from Ohio University and eventually became the director of psychology at Western Reserve Psychiatric Hospital in Cleveland--a position he held for 15 years. Though he will always need to manage his schizophrenia symptoms, he says he's recovered enough to achieve his professional goals and have a happy home life.
His experience, first being denied options for recovery, or even hope, then finding the motivation to fight his way out of an oppressive mental health system and up the professional ladder, also made him an advocate for the rights of mental health "consumers." He uses his unique perspective as both a psychologist and a consumer to push for the inclusion of consumers and families in SMI treatment decisions, as well as simple recognition that recovery is possible through proper psychosocial rehabilitation--and the judicious use of medication (see main article).
"We've been pathologized and ostracized and rejected by regular society, and they tend to give us labels like chronically mentally ill," Frese says. "But it's changing because we're not going to be quiet about being cast away as the monsters in the movies. It's a veil of silence beginning to be lifted."
Specifically, Frese points to positive signs of progress, such as attention to consumers in the recently issued President's New Freedom Commission on Mental Health report. The report says the health-care system should ensure consumers and families are integrally involved in SMI treatment, give them meaningful choices about treatment options and provide care that focuses on increasing the consumer's ability to cope with life's challenges, facilitating recovery and building resilience. The report also offers a flexible definition of recovery, which the U.S. Substance Abuse and Mental Health Services Administration (SAMHSA) is likely to adopt as its own, Frese says.
"We're real pleased to see that we're getting that kind of movement," Frese says. "And since the report calls for a recovery focus and a consumer-driven system, SAMHSA is going to be coordinating a lot of activities, including designing an official definition of recovery."
In fact, in August, SAMHSA's subcommittee on consumer issues recommended increased funding for programs such as the Mental Health Block Grant and State Incentive Grants for consumer-operated, national and regional services.
That government recognition, along with an increase in nontraditional mental health outlets, is evidence of how the consumer movement has transformed the mental health landscape, says psychology professor Diane T. Marsh, PhD, of the University of Pittsburgh at Greensburg. But there's still much improvement needed in traditional settings, she says.
"In most communities, there are now consumer-run services, such as support groups and drop-in centers, as well as psychosocial rehabilitation programs in which consumers assume leadership roles," says Marsh, who is the former chair of APA's Committee for the Advancement of Professional Practice Task Force on Serious Mental Illness and Severe Emotional Disturbance. "In contrast, traditional treatment centers have been slower to involve consumers as full partners in their treatment and rehabilitation."
In the end, though, the consumer movement is not just about ending stigma and changing health-care systems. It also aims to empower SMI consumers themselves, Marsh says.
"Although medication can provide assistance with symptom control, it is psychosocial interventions, such as therapy and skills training, that can support consumers in achieving their goals and improving the quality of their lives," she says. "When consumers take control and are full partners in designing their treatment and rehabilitation plans, they're most likely to receive the services that will meet their recovery needs."
Letters to the Editor
- Send us a letter