On September 17, one of the longest, and arguably the most arduous, marches in the history of civil rights rolled into Washington, DC, and chances are you didn’t hear about it. The participants had traveled 144 miles, from Philadelphia’s Liberty Bell all the way to the Capitol Building, under the banner “Free Our People,” to protest the fact that 2 million individuals are locked away in this country.
They were not talking about the prison industrial complex or people who have broken the law-unless you consider being physically disabled or getting old a crime. Today 1.7 million people are living (or “warehoused,” as the marchers would say) in nursing homes while 300,000 more are assigned to ICFMRs (Intermediate Care Facilities for the Mentally Retarded) and other residential facilities. Ask around and people will tell you that virtually no one wants to live in these places, but they do not have a choice.
The marchers took to the road to change this by raising awareness about MiCASSA (the Medicaid Community-Based Attendant Services and Support Act), legislation that would amend the Social Security/Medicaid Act and create an alternative called Community Attendant Services and Support. As it stands, we spend $82 billion a year on Medicaid long-term care, 70 percent of which ($57 billion) goes to institutional services. While allotting money to these institutional programs is federally mandated, states are not required to provide home-based alternatives, and many don’t. As a result, hundreds of thousands of physically disabled and elderly people are forced to leave their homes and communities in order to receive care.
The marchers, who desperately want to change this, are up against a formidable opponent. America has around 17,000 nursing homes, two-thirds of which are for-profit ventures. Despite what their lobbyists say, profits are far healthier than patients: often between 20 and 30 percent. A 1998 study determined that for-profit facilities deliver worse quality care than their nonprofit and public equivalents: that year inspectors cited for-profit facilities for deficient care 46.5 percent more frequently than nonprofits.
Between corporate cost-cutting and state budget-slashing, patients get squeezed. Homes skimp on such essentials as food and sanitation, and most are understaffed. Nurses and caretakers typically earn about $8 an hour for work that is both emotionally and physically exhausting. In light of this, supporters of MiCASSA also insist that attendants receive a livable wage and benefits. Even with this stipulation, home-based care is less expensive than long-term institutional care. And, of course, the benefit of living with dignity in one’s own home in priceless.
I caught up with the marchers on their last night, when they were gathered outside the Israel Baptist Church in DC. My younger sister, Sunny, who uses a wheelchair, had been in attendance since the start. It was her first action with the march’s sponsor, ADAPT (Americans Disabled for Attendant Programs Today), a group founded in 1983 that uses direct action to fight for the rights of people with disabilities. Usually they use their wheelchairs to block intersections, but some veterans told us stories of stopping traffic with nursing-home patients still stretched out on their hospital beds. Despite my able body, the activists I met on the march were all far more resilient than I, proving one of the main points of this and all ADAPT protests: that disabled people are not weak and only worthy of pity. These folks had come 144 miles, which is more than most people who can use their legs ever do.
But despite the determination of the protesters to counter stereotypes of disabled people as dependent on charity, aid came from many kind-hearted conservatives. The marchers camped in church parking lots and ate food donated by groups with names like “Amazing Grace.” Meanwhile, the left was conspicuously absent. Of the 700 organizations that have signed on to support MiCASSA legislation, the vast majority work primarily on disability issues, a small minority focuses on aging and the elderly, and only one is a union, the SEIU. Partly because the left doesn’t pay them much attention, the marchers were eager to demonstrate the bipartisan appeal of MiCASSA legislation.
“It comes up quite often, this question of why the liberal left leaves disability civil rights off the radar screen,” reflected author and activist Marta Russell when I asked her about the seeming invisibility of these issues. “Disability needs to be in the same sentence with race, gender and class.” More often than not, the politics of disability are ignored for the very reasons addressed by the march. Despite the fact that they number in the millions, we usually don’t see massive disabled turnouts at meetings or rallies: Either they can’t get to sites to meet or protest because of accessibility issues or they are locked away in nursing homes.
After two weeks, Sunny was accustomed to life on the road. I, however, was stunned by what I saw: dozens and dozens of multicolored tents, rows of handicapped accessible port-a-johns, and well over a hundred empty wheelchairs plugged in to an enormous generator behind the church. They had been going nonstop for two weeks: 200 people, most traveling by manual or electric wheelchairs, traveling single file along the highways at two miles an hour. Some activists, either using their arms or, like my sister, their mouths, could pretty much help themselves; others needed almost twenty-four-hour-a-day attendant care. They had camped (spending one cold and damp night on the floor of an ice-skating rink in Baltimore), bathed only once in the two weeks, endured pouring rain in Philadelphia (and water can be deadly for electric chairs), suffered unbearable heat (everyone was sunburned) and eaten peanut butter and jelly every afternoon for lunch. Yet, many told me that life on the road was far better than life in a nursing home.
“There’s nothing nursing and nothing home about a nursing home. It’s like a prison,” said Spitfire, who is 54 years old and spent two years in an institution. “I’d rather go to jail than go to a nursing home,” she confessed. Having been arrested fifty-three times for civil disobedience, she knows the difference.
Forty-six-year-old Albert Metz agreed. He spent his childhood in a state-run home in Oklahoma and has also stayed in various jail cells as the result of his activism. “My life was not my own,” he said looking back on the twenty years he spent institutionalized against his will. He and his wife now live in their own home with the help of an attendant.
The last day, as we trekked the final four miles, one protester shouted, “Don’t send Granny away!” to onlookers. Judging by the expressions on their faces, it did not seem that they saw the connection between these 200 wheeling radicals and their own lives. And so ADAPT, in a way, has two fights, one political, one cultural. In a society where youth rules supreme, discussing how the aging process can turn the most able-bodied into invalids is not a popular topic of conversation, let alone an issue sexy enough to build a mass movement around.
But the fact remains: Two million people are forced into nursing homes when they should have the option of living in their own homes and in their own communities. That may not seem like your fight now, but you may be surprised. Depending on your age, in a few years or a few decades it just might be.