Baby boomers are known for a lot of things, but not mental illness. My brother and I were supposed to join the great swell of success in the 1970s, but obsessive compulsive disorder and manic depression, respectively, got in the way. Our devoted middle class, Jewish parents spent the rest of their lives trying to reconcile their dreams for us with our actual lives.
Speaking recently with 10 members of the New York City Metro chapter of the National Alliance for the Mentally Ill (NAMI), I discovered many parents who, like mine, struggled in the 1970s and 1980s to fill the gap between family dreams and reality. (Unfortunately, I did not have the time nor space to talk to many other active NAMI members.) NAMI's parents found the going especially tough because their children suffered from schizophrenia. At the time, there were neither reliable medical treatments nor adequate social supports for people with the illness.
For the first 12 years; NAMI Metro was a labor of love. Even today with its professional staff and Park Avenue office, NAMI relies on volunteers to lead support groups, staff the Help Line, organize lecture series, testify at hearings, investigate complaints, edit the newsletter, or appear on television. The local NAMI members created a home away from home, if not for their own children then for succeeding generations.
From the Personal to the Political
In 1979, Adele Anshien, Rhoda and Paul Fuchs, Hope O'Connor, and Marilyn and Micky Guberman founded Friends and Advocates of the Mentally Ill, which today is known as NAMI Metro. The practice of discharging chronic patients from state hospitals was in full force. The last thing these middle-class parents wanted was to find their children living on the streets of New York
A member since the mid 1980s, Mildred Becker says, "Here there was compassion and understanding. I led a support group. Eventually, there were more support groups--for spouses, siblings, different illneses. We had nothing but ourselves." A member since 1986, Harriette Jaffe adds. "We were not just there to hold hands. We were there to advocate for better treatment, better relationships with professionals."
Gaining Strength for the Seriously Mentally Ill
Support, education, and advocacy compose NAMI's mission. It's a simple and compelling approach whereby self-help leads to mutual aid, the personal to the political. Says Rhoda Fuchs, one of the founders, "We didn't want to be a service organization. There were already organizations doing it. We wanted to improve services [by being a watchdog]."
Because their children were seriously ill, NAMI members committed themselves from the beginning to help the seriously mentally ill. The very people who once languished on the back wards of state hospitals were in the 1980s showing up on the streets, in shelters, prisons, and adult homes. NAMI feared that these people could be their children and sometimes they were.
Finding the System's Pressure Points
In 1990, in conjunction with New York Lawyers for the Public Interest, [NAMI Metro] started a major , ultimately successful, effort to get Sandoz Pharmaceuticals to reduce the price of Clozaril and have Medicaid pay for the first of the new generation of antipsychotic drugs for schizophrenia. The Clozaril battle was a high point in NAMI Metro's history because the organization's protest brought it national attention.
Obtaining Assertive Community Treatment (ACT) in New York City was another effort to help the sickest members of the community. Says Aviva Rice, a NAMI member since the late-80s, "ACT has all the requirements for a [loved one] who refuses help. It is well-known, evidence based, best practices, and the State agrees. It's expensive because it's comprehensive, but Medicaid pays for some services." The State and City agreed to the program in 1994.
Demonstrating against government and business policies of discrimination became a regular practice in the 1990s, from helping to pass the Community Reinvestment Acts for housung the homeless mentally ill to seeking parity between mental and physical health insurance.
Changing Antagonists into Allies: Doctors
As if the illness were not scary enough, doctors blamed parents and often prevented them from seeing their sons and daughters. Says Michael Silverberg, the current Board president and a NAMI member since 1990, "We've known for many generations that there's a genetic factor. Freud himself didn't believe Freudian principles applied to schizophrenia. Yet as late as 1987 [when Silverberg's son was diagnosed], doctors were blaming parents." Today, family members, doctors, and drug companies share some goals, such as accessible medication and good treatment.
Changing Antagonists into Allies: Consumers
NAMI Metro Executive Director Evelyn Roberts says, "There's a divergence in point of view between consumers and family members, especially on commitment issues. Consumers believe no one has the right to make that decision for them. This is a frustration for families who want their relatives to be relatively safe and protected. Says Michael Silverberg, "Kendra's Law [for outpatient commitment] and Assertive Community Treatment (ACT) were traumatic splits with consumer advocates but not consumers in general. It's terrible to lock heads about these tiny elements. Many consumers are not anti-meds or anti-science."
"Outpatient commitment" and "forced medication" are red flags for Marvin Spieler, a longtime NAMI volunteer and consumer Board member in the early 1990s. Spieler sees the need for comprehensive care but feels that threatening people is going too far. While praising NAMI for supporting his goals as a Board member, Spieler doesn't think the group has done enough recently to achieve consumer objectives.
Consumer Participation in NAMI Grows
This reporter is one of the 418 current consumer members, up from 136 in May 2000. Apparently, consumers are increasingly attracted to the organization, which now runs several support groups for them. Consumers are also attracted by NAMI's volunteer experiences, including office work, the Helpline, support groups, and advocacy. Given the modest growth in family membership (757 to 822) in the past two years, NAMI Metro is apparently evolving from a family organization focused on schizophrenia to a multi-interest (even multi-cultural) force for change.
What does this mean for the future of NAMI Metro? One question is how much clout consumers will have in an organization with power increasingly shared between family members and providers. Another is whether the participation of providers and consumers will strengthen the organization or dilute its focus. And finally, in more personal terms, is NAMI changing the relationships between people living with mental illness and their relatives?