For the past year "health reform" has meant activities on Mount Olympus (Washington DC) and the foothills (state capitals). But true reform typically arises from more humble origins.
On March 30, Harriet Shetler died in Madison, Wisconsin, at 92. In 1977 Ms. Shetler was anxious and preoccupied about her son Charles, who had been diagnosed with schizophrenia. A friend at the Congregational Church she attended suggested that she talk with Beverly Young, another church member whose son also had schizophrenia.
Harriet and Beverly met for lunch at the Cuba Club in Madison. In addition to having children with schizophrenia, both women were active in church and other civic activities, and they felt an immediate rapport. Harriet's daughter Jane Ross described them as "two women grieving over their personal associations with their sons, and they decided to get together, to pull together a meeting of [others] with similar interests in Wisconsin."
In April 1977 Harriet and Beverly convened 13 people at a night club in Madison. Harriet suggested that they call themselves "Alliance for the Mentally Ill," partly because the acronym, AMI, meant "friend" in French. Within 6 months they had 75 members.
In 1979 the Wisconsin group came upon a newsletter from a similar group in California. Harriet Shetler and Beverly Young organized a national conference. They expected 35 attendees, but 250 came, including Dr. Herb Pardes, then director of the National Institute of Mental Health. The attendees created and launched the National Alliance for the Mentally Ill, NAMI. (The organization has tweaked it's name but retains "NAMI," which is known to every mental health professional.)
Here's how Harriet Shetler explained NAMI's mission in a letter to the editor in 1993: "We are trying to change, one person at a time, society's attitudes toward mental illness. We are trying to level the playing field to improve job opportunities, access to housing and the chance to live in the community instead of being warehoused in an institution."
Over the years I referred many families to NAMI's family-to-family program, a twelve session course taught by trained family members. NAMI has been a super-strong lobbying force on behalf of services for people with severe mental illness.
At NAMI's 25th anniversary in 2004 Harriet said: "For 25 years we laughed when we could and we cried over the too-early deaths of our children, and we waited for the light. [Moving forward] let’s pull up our socks, and never, ever lose heart, my co-conspirators on this journey."
Harriet Shetler knew what real health reform meant!
(I gathered the information for this blog from the New York Times obituary, a statement by Michael Fitzpartick, executive director of NAMI; and an article in the Wisconsin State Journal.)