Tuesday, April 14, 2009

The Radical Revolution That Didn't Occur

Looking Back to the 1990s When AMI Was a Real Advocate

Almost every year in the 1990s NAMI NYS organized rallies and demonstrations in Albany. We did it with our friends from NYAPRS and the Mental Health Association and housing groups comprising the mental health action network. Our rallies at the Capitol came in the winter and spring when the legislature was fooling with the governor's budget cuts and didn't act on the bills we wanted
We had the famous demonstrations in 1991 when we put hospital beds in the street alongside the Capitol and blocked State Street for part of an hour. And in 1993, I think it was, we built homemade wooden jail cages and set them up on the Capitol lawn to oppose the imprisonment of mentally ill people. Another year we let loose a cloud of green balloons over the Capitol.
The late winter rallies were sometimes accompanied by a hail of snowflakes. Some of us stood in ice and slush on the massive steps. The crowd wore overcoats with their collars turned up. They included old people, the loyalists who had started the AMI family movement in the 1980s and kept coming back
We had the energy and enthusiasm to do it. We screamed our lungs out and hugged one another. One year a young man played music on a keyboard in a cold that nearly froze his fingers. And a young woman who sang like a nightingale led us another time. Our speeches drew rounds of applause.
AMI people would remember. It was all so grand. For those of us most enthusiastic through the 1990s, something happened after that—we just got older or tired of the annual go-around without success, or the economy soured and people's jobs got cut back, or it was simply all over.
I don't know which of these mattered most, but the fight isn't there anymore for the families of the mentally ill to go over to Albany and kick and scream the way they did in the past. New regimes have replaced the earlier ones in the NAMI NYS office. It will take a new generation.
The state government had hit hard times by the end of the decade and everything was trimmed back. We forget that those years were almost as tough economically as now and state mental health budgets suffered the same way
1996 was a year when things apparently weren't going well. We called a rally on the Capitol east steps later than usual. On May 7 abut 200 of us gathered at the base of the huge promenade while our leaders harangued the crowd. Our shouts resounded around the Capitol grounds and routed out the state workers. I still have the notes from a blustery speech I gave that day:
“We're here to raise hell about the budget” I bellowed over the bullhorn. “How bad is the governor's budget for mental health? It's like toilet water—smells good and it's cheap.
“Community mental health is at a cross roads—no more new housing, no new reinvestment, limited Medicaid, block grants to the counties.
“He's got us on the run. He's Wily Coyote. He's Jimmy Hoffa—he's cutting our legs out from under us.
“Tell those wieners in the legislature, tell those bean counting bureaucrats—we won't stand for these cuts,” I screamed and they roared back
At the end we sang religious songs like “Amazing Grace” and “We Shall Overcome”. That's what it was like—a religious aura swept over us to beseech the governor to make life a little easier for our loved ones with serious mental illness.
And then we got our leaders together after more than an hour and told everybody we were going to march around the Capitol and really let them hear us. We massed at the foot of the steps with our leaders out front with the bullhorns and the chants started, with the crowd yelling back without stopping, all the way down the line in an unending roar.
As we marched around the building we felt our chanting could penetrate inside to the governor's office and anybody else who might listen. “Keep the promise of community mental health,” we repeated until we were hoarse.
After it broke up we went indoors to see if we could meet with somebody on the governor's staff because you don't ever meet with the governor himself. We did and we got a message to him that laid out what we were there for. Then we went outside and felt good.
We were just ordinary people who thought demonstrations like this were important. We found the energy and excitement. After the 1990s we didn't play it up so much any more
Every year in the 1990s it seemed, we fought to restore the cuts Governor Pataki and his aides put into the mental health budgets. They were slow to open new housing, new community programs, while cutting back on state hospital beds. Any changes came slowly and grudgingly and I think we fought for them tooth and nail. But the big lobbies like those for state school aid, the unions, the hospitals and nursing homes, and colleges and universities walked off with the money. The governor and most of the lawmakers never thought enough of mental illness to give it the attention it deserved.
There were high points in our struggles, gains in numbers of new apartment beds, funding for community services, employment supports, children's programs and crisis services. The best of these dried up at the end of the 1990s,when the going got tougher and the state bowed out of paying most of the bill on its own. The state shifted everything possible to Medicaid so the feds would pay at least half of what the state was paying previously.
Too much of the mental health budget still went to maintain a vast network of state hospitals which robbed the rest of the system from making headway. The best program of the era was called Reinvestment and it would disappear, too. Our effort to get mentally ill people more housing, jobs, transportation, clinic help, case managers and peer support seems old fashioned now.
Our slogan: “Keep the promise of community mental health” has been transformed, the new commissioner might say. He would reform outpatient mental health by improving clinic care and yet he would reduce continuing treatment programs, which we believed in. We stuck to the medical model that relied on doctors, medicine and hospital beds, but these are now downplayed.
After the end of the 1990s we lacked the spine to keep it up. We called fewer rallies and let other groups, like NYAPRS, run the show. Why did that happen? Did we grow too old? Did those politicians on the hill finally crush our morale?
(Roy Neville)

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