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Issue 1 2002

Dreams of Home By Zen Garcia   San Francisco, Oct. 22, 2001 -- It was just a little over a month ago that America and its dream of freedom for all was threatened by those who hate our lives and liberties. Terrorists may even now still be at work powdering letters with anthrax. More photos of the action from MCIL En route to San Francisco to join the rest of ADAPT in protesting for the civil rights of persons with disabilities, I felt an awkward sense of guilt, almost, for challenging the authority of our government in these sensitive times. But knowing that every three minutes someone dies somewhere in an institution against their will -- and that we are discriminated against so thoroughly here in the States -- makes me continue with the work I'm doing. I know there's no reason why it's not me in a nursing home today, other than the fact that I have strong family support and a blessed sense of luck that always seems to provide me with what I need when I need it. I feel duty-bound to the 2.2 million people incarcerated in nursing homes across the nation. I want hope to be shared with those that are being lulled into physician assisted suicide by those who think life can't be grand for those who live it differently. Perhaps this is the best time to protest -- because now people are thinking about what it is to be an American; to have justice, liberty, and freedom guaranteed by birth here in this great country. Perhaps our nation, focused on those who would challenge our freedom and way of life, will understand our cause and its similarities to their hopes; will understand why we are determined in what we do. Wherever oppression finds itself stronger than liberty, there will be numbers fighting for freedom -- that same freedom that was threatened on Sept. 11 by terrorist bombers. America is freedom for all -- unless you become disabled and are housed in a nursing home. Life then becomes a question of policy. Currently, policy dictates that 85% of the American population will die in a nursing home room, many alone. More than anything, I think, they are trying to keep us from public view. People with disabilities have been taken to the darkest, deepest recesses of some of the shadiest, most nightmarish places known to human history in the name of prescription and treatment. Medicinal abuse was deemed necessary to subdue our peculiarities. They want to keep the freaks out of the neighborhoods, keep the deformed out of the mainstream. We the disabled, according to their rules, are only for the circuses and boarding houses. They want to cure us, or kill us trying. We are not part of the "we the people" mentioned in the Constitution. They don't want us out in the open, even if it costs less for us to be included; they will pay more just to lock us away out of reach of all those that might be "offended." Even if it makes sense, they are afraid to help, understand, take notice, that, yes, we are human as well. We are brothers, sisters, mothers, fathers, and friends -- how can we not want the same things they do? Day 1 -- Laguna Honda -- The Nation's Largest Nursing Home Single file, we rolled the perimeter of the Laguna Honda grounds, unable to escape noting how artfully crafted the doors, building, and lawns appeared from the street. Like something out of 'The Shining," the scene played eerily into the mood of low-lying clouds, light drizzle, and harsh wind. A huge beautified warehouse mansion: one did not see the true ugliness until one went around the side: huge buildings, row after row with bars on windows, armed guards at the doors, chain link fence stretching the whole length of the backside. One could tell the place was old, with ghosts haunting its halls and walls. Inside, the state of Califonia houses 30 people at a time in a one-room ward. At a cost of $400 dollars a day, one could stay in an expensive hotel and order room service every day -- and still not exceed the daily expense the state incurs keeping a person in Laguna Honda. ADAPT circled the grounds, singing songs of freedom to the people inside. Onlookers didn't know why we protested. Some thought we wanted to make the nursing home more accessible -- until we lined up in front of the entryway holding crosses for the countless people dying in nursing homes. For full effect we spread ourselves wide, as if to let those inside know there was an army on the outside trying and willing to do something on their behalf. People peered down from inside their windowed heights like ghosts. Day 2 -- City Hall It's a beautifully warm and blessed day compared to what we endured at Laguna Honda. ADAPT is at City Hall to ask what the hell Laguna Honda is doing in the same community that hatched the independent living movement -- Berkeley is not 50 miles down the road. The city plans to tear down the aging 1,200 bed facility and replace it with with another, this one 1,600 beds, by 2012. I'm on the east side of City Hall, in my manual chair, right in the middle of the intersection between Polk and McAllister. We have blocked all the intersections. Police units are all around. Few officers seem irritated; most are inquisitive, even supportive. It is early yet, though. Mayor Willie Brown arrives in a six-car limo motorcade, steps out, takes a look around, sees us gathered at every corner, gets back in his car, and leaves. A few hours later word comes that the Mayor will meet Wednesday at 9 a.m. with 10 members of ADAPT. Day 3 -- The California State Building Just one block down from City Hall, we are blocking the four intersections surrounding the California State Building which houses Gov. Gray Davis's office. Police have redirected the flow of traffic two blocks away. I am at the corner of McAllister and Larkin. The weather is pleasant: breeze light, spring warm. Cops are not strong in number, having got used to us, knowing we are non-violent. Like us they are simply chilling, waiting for the conclusion. We have made five demands of the powers that be: to allow Laguna Honda residents to use Medicaid funds for living in the community; to refuse to use state or Medicaid dollars to rebuild Laguna Honda, or to use any individual's Medicaid funding to put them in Laguna Honda; to develop, by Feb. 2002; a "comprehensive, effective working plan with goals of reducing the number of people in Laguna Honda"; to write to the National Governors' Assn. urging a meeting betweeen NGA and ADAPT on implementing the Supreme Court Olmstead decision, and to meet with ADAPT to "seek alternatives other than institutional care." At 2:45 a woman in a new VW Beetle tries to ram though our barricade. Things are going sour inside, too; we hear. We are to clear out or face arrest, we're told. I plan to be arrested. I get my attendants to lift me out of my chair and lay me on the asphalt in the middle of the street, directly in front of the State Building. It's 5:00 o'clock now, the sun low in the sky. The pace gathers momentum. The streets fill with pedestrians leaving work, police working fast to clear us for evening rush hour. I imagine I see a kindness on the faces of people in the crowd as they mingle with us, learning the facts, trying to understand. They are amazed at our intelligence, organization, and willingness to be arrested. "I'd rather go to jail than die in a nursing home," I yell, along with the others being arrested. There are 109 of us arrested in all. It is not a crime to be disabled in America. We're not criminals. Yet as long as choice is not incorporated into long-term care in this country and the world, we will continue to fight, gather, protest and get arrested. Day 4 -- City Hall again I am in front of City Hall, rallying with ADAPT. We wipe back tears as we listen to the nightmare accounts of those who have been abused and neglected in nursing homes, memories of losing their kids and families simply because they were disabled. "It's just plain wrong!" echoes through the streets surrounding City Hall. Johnny Crescendo sings his "Tear Down The Walls Of A Nursing Home." Inside, five of our group are meeting with Mayor Brown. Cameras line the steps of City Hall. Reporters are gathering their stories. A warm clear sunny 80 degrees. Three generations of ADAPT are here -- we are more a family than a loose gathering of friends. There is a sense of camaraderie here that most don't get to experience in the obligations of normal routine. Only when life is on the line and one has no other recourse but to fight (and in fighting find others also passionate in their sense of duty to civil rights) can one understand the passion that drives us. That passion is what creates change. That passion is what you see at every ADAPT gathering, what our members take into their lives and into their communities; it is what inspires others to do for themselves and want more for themselves. We spend our final afternoon hanging out with friends, sharing memories of past actions and stories of how we got here. It's just a matter of time before we get the Medicaid Community Attendant Services and Support Act through Congress, we say, and all people in nursing homes or in danger of going into nursing homes have the choice to decide for themselves what they want. Zen Garcia, an activist with ADAPT since 1996, writes a monthly column for Disabled Dealer Magazine, from which this article was taken. WHAT DO YOU THINK of what you've just read? Click to tell us. Back to table of contents