Fred Frese was a young Marine Corps officer and graduate student when he started experiencing the psychotic delusions of paranoid schizophrenia. He was hospitalized, the first of what would be 11 such institutionalizations. But he also managed to complete graduate school and earn a doctorate in psychology from Ohio University. He married and had four children, and 12 years after his first hospitalization, he became a chief psychologist for the Ohio mental health system.
That was 30 years ago. Today, Frese is director of the Summit County Recovery Project in Akron, Ohio, and one of the most articulate and outspoken national advocates of mental health recovery programs.
A crucial part of that recovery is battling the stigma of mental illness, he said. About 6 percent of the population, or one in 17 Americans, suffers from a serious mental illness. One in five families are affected.
"It's important for us to get out on Front Street and talk about our experiences," Frese said. "Many of us have long experiences with hospitalization, institutionalization. In the '70s, many of us were simply put away."
Frese knows what he's talking about. When he had his first psychiatric breakdown, he was 25 and in the Marines. He started to experience classic symptoms of paranoid schizophrenia: delusions, hearing voices, inability to separate fact from fantasy, inability to think logically, an all-consuming paranoia. He came to believe that enemy nations had hypnotized American leaders in a plot to destroy the United States. He was sent to the naval hospital in Bethesda, Md., where he stayed for five months.
Since then, he has been hospitalized numerous times, but he's also been able to function with the help of medication. He earned graduate degrees in international business management and psychology, and served as director of psychology for the Western Reserve Psychiatric Hospital in Sagamore Hills, Ohio, for 15 years until he retired in 1985. Since the early 1990s, he has directed the Summit County Recovery Project.
"Fred is an extraordinary person who has helped educate a whole generation about schizophrenia as a brain disease and has demonstrated that it is possible to live a full and productive life despite having it," said Dr. E. Fuller Torrey, a leading expert on severe mental illness.
Frese serves on the board of the nonprofit Treatment Advocacy Center, which Torrey founded, and a number of other national organizations, including the National Alliance on Mental Illness. As such, he travels and speaks to groups all over the country.
Recovery from severe mental illness is a relatively new concept. Until the 1950s, when medications were developed to help ease the symptoms of schizophrenia and other severe mental illnesses, it was believed that a diagnosis meant inevitable deterioration into unresolved dementia, Frese said.
In the 1960s and '70s, medication became more widely used, and mental health professionals began to view severe mental illness as treatable with drugs and therapy, what is commonly referred to as the rehabilitation model. Still, the focus was on the mentally ill person as a patient. It has only been in the very recent past that recovery from mental illness has been deemed possible, Frese said. That shift occurred largely because those who have experienced mental illness began to advocate for themselves and demand a voice in their own treatments.
Frese and nine other psychiatrists, psychologists and other mental health professionals — who are also consumers — discuss the pros and cons of recovery versus more traditional treatment options in an article to be published in Schizophrenia Bulletin this month.
Is the recovery model the best? While professionals disagree, Frese says the key is to let the consumer decide.
"The essence of the recovery model is focus on that individual in their own journey toward recovery, and respect for that. These are consumer operations, all consumer-focused, but we're all doing things differently. The pristine ideal is to have them all run by consumers. That's the ideal. Many of us have helpers, as well, blending the professional with consumer. New York's Fountain House, for example, that's a very successful model and it's being replicated all over the place."
Fountain House created the "clubhouse" concept, which focuses on recovery efforts but uses a professional staff. The emphasis is on the members of the clubhouse engaging with each other and with staff so they can recover their self-confidence and productivity and, ultimately, re-enter society.
The Summit County Recovery Project, which is funded by the county Alcohol, Drug Addiction and Mental Health Services Board, offers peer counseling, educational information and a drop-in center for those recovering from severe mental illness with the goal of helping them function in mainstream society. But this program is managed entirely by people — referred to as consumers — who are recovering from mental illness themselves.
"Virtually all the other (mental health) programs are run by people whom I call the chronically normal," Frese said. "They are dedicated to taking care of us, but we are people trying to work ourselves back into society."
The drop-in center, called Choices, is primarily a social center that serves dozens of people every day, Frese said. Additionally, the Recovery Project has an advocacy organization — a 501(c)3 nonprofit — called the Summit County Peer Support Organization. It nominates people for various boards that fund services and also networks with state and national groups involved in treating the mentally ill. The third leg of the project is a lending library called Consumer Educational Outreach Center. It provides educational materials for consumers and families, advocates for services and rights for the mentally ill, and fights the stigma.
To dispel the stigma, consumers are encouraged to talk about their illnesses and not be ashamed, Frese explained. Recently, the CEOC videotaped a number of consumers telling their stories and posted nine of them on YouTube.com.
While he admires the Fountain House model, Frese said, "I prefer, quite frankly, for us to have the latitude to function on our own."
The Summit County Recovery Project model could be implemented elsewhere, Frese believes. But "it really depends on who you've got in your county who's willing to come out and identify themselves as being mentally ill and take the lead. You've got to have a cadre of folks who are willing to do this. It really depends much more on the people (consumers) than it does on the program. The model here really is focused on the person; whatever they need health-wise, we'll do it."
At 68, Frese could retire — again. But don't bet on it.
"That question of being able to help other persons with this condition is the one that is most important to me. Most of us agree with one thing, and that is that the chronically normal folks, they're missing a lot of stuff. Having been there, we've got real strong opinions on how things should change. If you've been there, you know.
"It's a privilege to have this opportunity to be able to have a seat at the table and have input, and have people respect, seemingly, your perspective on how to change the system and help the mentally ill get back into society in spite of their disability, as opposed to locking them out."
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