Meet the Radical Disabled Americans Fighting the GOP Health Care Bill - Pacific Standard

Meet the Radical Disabled Americans Fighting the GOP Health Care Bill

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I joined a group of ADAPT protestors outside House Speaker Paul Ryan’s offices in Wisconsin. They say they’re not going back to nursing homes without a fight.

By David M. Perry

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Speaker of the House Paul Ryan holds up a copy of the American Health Care Act during a news conference on March 7th, 2017, in Washington, D.C. (Photo: Chip Somodevilla/Getty Images)

“Up with attendant care, down with nursing homes!”

After days of sun and warmth, the weather in Kenosha, Wisconsin, has returned to its traditional February fog. A few dozen men and women, some in wheelchairs and one with a guide dog, occupy the sidewalk outside Speaker of the House Paul Ryan’s constituent services office. Bundled against the cold, they chant in unison as individual protestors wheel up the temporary ramp — likely not compliant with the Americans With Disabilities Act — that takes them over the three stairs into a small room containing a single staffer, a desk, some kind of plant in a pot, and a couple of chairs. It’s a pretty typical small-town protest, the type that’s happening all over America, but this one involves more people in wheelchairs — plus a surprisingly detailed chant about “attendant care.” ADAPT, a decentralized disability rights group that has been staging direct actions and winning important battles since the 1980s, has come to Kenosha.

Over the last few months, following the inauguration of President Donald Trump, huge crowds of protesters have taken to the streets, airports, and town halls, seizing their share of media attention. But at Ryan’s little two-room office wedged against the yellow brick exterior of the Oriental Inn, there’s no national media, just a reporter from the local Kenosha paper who ran over from his office, without a coat, and me. I’ve been invited to see how disabled activists are organizing, in small acts of resistance, to fight for their right to live independently.

ADAPT — originally known as Americans Disabled for Accessible Public Transit — was founded in 1983 as a direct action group focused on getting wheelchair lifts in buses. Their tactics involved civil disobedience, including simply wheeling themselves in front and back of buses, trapping them; sometimes they have risked arrest. When accessible public transportation became part of the Americans With Disabilities Act in 1990, ADAPT shifted focus, rebranding as Americans Disabled Attendant Programs Today. The organization now advocates for other kinds of resources that enable independent, community-based living.

For these veteran protesters, federal disability policy is literally a matter of freedom versus incarceration, life versus death.

Throughout, direct action has been the group’s hallmark. In 2014, for example, ADAPT rolled into Little Rock, Arkansas, to fight what they characterized as the state’s legislative bias against institutional living. Ironically, the city police didn’t have enough wheelchair-accessible vans to arrest everyone, so the police chief appropriated a school bus instead—complaining all the time about how protest was pointless. Michael Bailey, one of the protesters present that day in Little Rock, told me that he was getting pretty angry and informed the police chief that, without ADAPT, the school bus wouldn’t have a lift in the first place. In 2015, around 60 ADAPT activists were arrested after chaining themselves to the White House fence, fighting to push the Obama administration to do more to combat “institutional bias” against community living.

The organization is decentralized. Mark Johnson, one of the founders of ADAPT, explains: “It’s a participatory model. You don’t have a staff, a board, an annual meeting. It’s a network, affiliates, supporters. Locus of control is still based on where the most energy comes from.”

Bruce Darling, one of the organizers behind the energy coming from New York, stresses that he’s not the leader; he merely “organizes the organizers.” Local chapters lead themselves.

Still, Darling says, with the GOP newly ascendent and targeting Medicaid, the focus has changed. “Primarily,” he says, “local work [over the past few years] has been about making restaurants accessible, fighting Uber, the usual fare. But with the shift in Congress, there’s a big push about pushing back against these congressional Republicans locally.”

While ADAPT broadly opposes the Republican assault on the Affordable Care Act, the protesters I met in Wisconsin are specifically concerned about Community First Choice, a component of the ACA that provides extra federal funding to states for moving people out of institutions. ADAPT is also concerned about the reduction of federal funds through the use of Medicaid per capita caps or block grants. Overall reductions could severely damage access to “long-term supports and services” that permit independent living, including personal care attendants. Without these programs, ADAPT fears, it’s back to the nursing home. Darling characterized it as a threat under the Fifth Amendment, because he (and the disability rights movement in general) sees institutions like nursing homes as just another form of incarceration.

An ADAPT protest, especially one where the plan is not to be arrested, is a lot like any other small act of resistance. There’s a lot of waiting around, chanting, and trying to figure out who should go where and do what. We all meet up at the Marina Garden Family Restaurant parking lot that’s just around the corner (so out of sight) from Ryan’s office. Aziza Nassar, a young woman who uses a wheelchair, heads over first to get the staffer to put out the temporary ramp. There’s some expectation that everyone will be able to simply roll or walk into the office, but once we encounter the polite young woman staffing the desk, the plan changes. She proffers forms where we can lodge grievances, and keeps intoning the rule that only one person is allowed inside at a time. It’s a pretty awkward space (and a dangerous ramp) for people in powered wheelchairs to enter or depart. So a few people file in politely while the rest stay outside, filling out forms and chanting.

After about an hour in Kenosha, everyone piles back into their vehicles and heads up the Lake Michigan shoreline to Racine, once again parking around the corner out of sight. A local Unitarian Universalist minister joins the gathering, guitar in hand, and his presence at the protest is never fully explained; later, he will ask me what the group was. The Racine office is perfectly accessible, but there’s no polite staffer in sight. Instead, it’s dark and locked, so the ADAPTers chant awhile, before before giving up and heading back around the corner. At that moment, a Ryan staffer gets out of her car and enters the office. I head inside and ask whether she’s been ducking the protest or if the timing was just a coincidence. She refers me to the press secretary (who has not returned requests for comment). Down the block, a Racine police officer keeps an eye on the situation, but nothing gets out of hand. This is a day for polite airing of views, not hardcore civil disobedience. Still, for these veteran protesters, federal disability policy is literally a matter of freedom versus incarceration, life versus death. Disobedience beckons in the near future.

Kevin McPhan, an African-American man with from Chicago wearing a blue ADAPT sweatshirt (the ADAPT logo is a figure in a wheelchair breaking the chains on their wrists), makes it clear to me that he’s not going back to institutional living without a fight. He uses a wheelchair, and tells me all the things he’s learned to do independently, including cooking. “I cook more now than before I got disabled,” while living in the community, he says. It’s all thanks to having people he trusts work with him. McPhan is smiling, but his voice gets more serious as he tells me, “I survived in four nursing homes in one year … one year and four months. I’m doing really good now.” He needs the care to keep making progress. He does not want to go back.

Was the Kenosha and Racine action a “success?” Darling tells me that you can’t judge these small rebellions on whether they flip an elected official’s position. Protests, he says, can strengthen a larger wave of momentum toward policy changes while also securing elected allies—but he adds that it’s equally important “whether folks were pumped up and felt good about it.”

“Because then they’ll come back?” I ask.

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(Photo: David M. Perry)

He replies that, yes, excitement can mean that you’ll get an individual back at the next action, but there’s something bigger here specific to the disability world. As Darling says: “It helps us combat our own internalized ableism about being broken.” He told me a story about a woman from his local chapter who had been institutionalized as a child and was later arrested for chaining herself to the White House fence in April of 2015. The woman told Darling, “Thank you; what ADAPT did today was help me transform years of oppression and being locked up into something positive.” Darling adds that, when ADAPT acts, everyone sees “people with significant disabilities inserting themselves in the world.” For disabled protestors, being visible in that way can be its own victory.

Back in Kenosha, Gloria Nichols, an elderly white woman in a wheelchair, with a blue coat and hat and a red-and-white blanket across her lap, tells me that she just wants “some sense of civility in this world. And we’re not getting it now.” Another protester calls Nichols a “long-time warrior — she never gives up.” I ask Nichols how long she’s been doing ADAPT actions, and she replies, ruefully, “Too many years.” Things get better, she tells me, and then they get worse. “They vacillate,” she says, but “now it seems we’re being attacked federal and state.” She gives me a thumbs up and lets me take her picture, then gets ready to roll.

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