WASHINGTON—Arranging something like 100 wheelchairs and mobility scooters in spaces that were not built to accommodate 100 wheelchairs and mobility scooters, which is to say most sidewalks and buildings throughout the United States, is not entirely unlike a game of Tetris.
It is 4:25 a.m. on Monday, September 25, and Anita Cameron is adjusting her scooter forwards and backwards as the crowd of people gathering in front of a hotel near the National Mall expands to the length and width of the sidewalk. They are all part of ADAPT, a national network of radical disability rights activists who model their tactics on the nonviolent confrontational strategies used by the Civil Rights Movement. Cameron, along with most of the people sharing the sidewalk with her, spent a good part of the summer getting arrested at the offices of various Republican senators working to repeal the Affordable Care Act and decimate Medicaid. They are in DC this week for more of the same.
A few feet back, another member weaves through the line to hand out brown bags of apples and sandwiches that had been packed up the night before by other ADAPT members. “Do not eat these now,” he announces. “They’re lunch—not breakfast.” I ask Cameron, who is 52 and a 30-year veteran of ADAPT, where the group expects to be around lunchtime. “No idea,” she says, almost laughing at the question. “And wouldn’t tell you if I knew.”
This is how ADAPT works. The group has no formal leadership, and keeps confidential the specifics of its direct actions—even from most members—until the very last minute. The people doing the planning, often weeks and months in advance, can change from action to action. As one member told me, “it’s more about who’s available and wants to do the work than any kind of hierarchy.” Instead of formal leadership, there is a designated set of “day leaders” who are responsible for helping to implement and problem-solve. If one of them gets arrested, someone else comes in to take over. “We’re like the good version of a hydra—cut off one head and three more pop up,” another member says.
The model is built on trust, and a shared sense of militancy. Not everyone participating in an ADAPT action agrees to get arrested if it comes down to it, but most of them do. “ADAPT members know going in what could happen to us,” Cameron says as the line starts to move forward. “We know there’s a chance we’ll get roughed up, taken out of our chairs, stuff like that. It’s hard for some people to look at, but the country should have to see it.”
By 5:00 a.m., the group is snaking through a still-dark Washington in single file, the line stretching back blocks. ADAPT members use the street, rather than sidewalks, to get around, because curb cuts can be unreliable. But I also suspect it’s because it’s disruptive. As we move down the road, I watch the faces of the drivers, sometimes bored irritation and sometimes a nodding kind of enthusiasm, but there is always a reaction. They are essentially trapped as the procession moves past them. “People with disabilities are inconvenienced all the time,” Colleen Flanagan, who is 37 and a member of Boston ADAPT, tells me. “It would be nice if [able-bodied] people could just accept the three-minute inconvenience.”
After just a few blocks, the unpermitted march has already attracted four police cars. An officer consults with the day leader at the head of the line and they seem to come to some sort of agreement. The patrol cars stay with them for most of the last mile, but break off when the line suddenly moves onto the sidewalk in front of a white marble building. I realize where we are, and their action for the day becomes clear.
The Senate Finance Committee hearing on Graham-Cassidy is scheduled for that afternoon at the Dirksen Senate Office Building. As people reassemble in a half-circle formation around the entrance, another ADAPT member arrives with overflowing bags of McDonald’s. People start passing around sausage McMuffins and laughing at stories about getting their asses beat by cops or being let out of jail because the county didn’t have an accessible toilet. It’s only 6:00 a.m., and security won’t open the door for another hour and a half. They don’t mind the wait.
According to the Census Bureau, one in five Americans has a disability, but the civil rights of a group with a population nearly double that of Texas are often treated as a marginal issue in mainstream politics. This is maybe one of the reasons that the party in control of both the White House and Congress believed it could introduce a bill to initiate a radical unmaking of Medicaid—which covers more than half of long-term services and supports for seniors and people with disabilities—and pass it without a fight.
They should have expected one. ADAPT was founded in Denver in 1983 by a group of activists fighting to make making public transportation more accessible through wheelchair lifts on buses. They won that fight, nationally, when the Americans with Disabilities Act was signed into law in 1990. In the decades since ADAPT’s founding, its guiding principles have stayed consistent—accessibility, integration, and freedom—but it has greatly expanded the scope of its aims. Medicaid, and the fact that the program is essential to people who rely on longterm care to remain in their homes and communities, is just one of the fronts they fight on.
“I’d probably be dead within two years,” Alisa Grishman, who is 35, from Pittsburgh, and has a pastel stretch of roses and other flowers tattooed up the length of her right arm, tells me once we’re inside the building, killing time before the hearing. “That’s what my doctor and I have kind of figured out. One of my medications alone costs $22,000 a year, and I am on 20 medications.”
With the caps proposed in Graham-Cassidy, Grishman predicts she would max out her allowance by April. Without her medication, “I’ll rapidly deteriorate and that’s that.”
Grishman, who has multiple sclerosis, is one of several people I met who just recently became active with ADAPT. The organization inspires loyalty—I met dozens of members who had been with the organization for decades—but the latest Republican assault on Medicaid has inspired a new crop of activists to embrace ADAPT’s mission and tactics.
Grishman described her history with ADAPT as “very short but storied,” since one of her first actions ended with her getting pulled out of her wheelchair by cops while occupying Rob Portman’s office in Ohio. The experience of confrontation has been revelatory, she says, because for too many lawmakers, and for too long, the issues faced by people with disabilities, and all people dependent on Medicaid, have been abstract. “I want them to take time to look us in the face because I want them to know who they’re killing,” she says.
But while this drives the urgency of their methods, ADAPT’s analysis, and the reason they fight, is more expansive than immediate needs, she adds: “You are not fixing this world for me, you are preparing it for you or your children. It’s not about us and them.” The demarcation between those who have a disability and those who do not, between the sick and the well, changes through time and circumstance. The conditions of the body are fluid. The so-called able-bodied will never remain so forever.
I hear this from different members of ADAPT, again and again, in the hours between arriving at the Senate office and when the hearing will actually begin. (This is much of what an action is: waiting, planning, talking to pass the time.)
“I began using a cane at 19, and I went from that to double forearm canes, and I used those for about seven years, then moved on to a manual chair. Then about 12 years ago I moved into a power chair,” said Lopeti Penima’ani, 57, and here from Salt Lake City with his support dog, Hoku, who comes to every ADAPT action with him. “I’ve been radical for a long time, but my consciousness grew as this was going on.”
And so he sees his fight—to stay in his community rather than in a nursing home, to have transportation and housing that is accessible to all people—as a fight for everyone. “Everybody is just one illness, one fall, one accident away from being a person with a disability. Anybody, at any time,” he says. “With the senior population coming up, they will be considered disabled at a certain time. Life changes as they once knew it. We’re not asking for anything but what can help us to exist.”
Around us in the hallway, the things that can help us to exist are on full display. The reality of being a body is everywhere. Some of the hundreds in the corridor are standing, slowly sinking against the wall as fatigue sets in while police patrol the halls and tell them to stand again. Periodically, the sound of alarms ring out in different intervals, a reminder to people taking medication, changing out feeding tubes, and checking catheters. The bottled water is running out, and people share what’s left with one another. A young woman pulls her hoody up over her eyes and slumps on her mother’s lap, resting together on her wheelchair. There is so much need, from all of us, but there is also so much capacity to meet it. This kind of mutual care is in the very bones of ADAPT’s model of activism.
One member, Pilgrim Tierney, a 34-year-old from Wisconsin who has a shock of blue hair, explains to me that their autism and sensory integration issues can make direct action a challenge, but it has never kept them away from a protest. “This is important work and it has to be done,” they say. “I know that my ADAPT family has always got my back.”
By 1:30 p.m., after a full six hours in the corridor, there are hundreds of people filling it, often two- and three-wheelchairs deep. Police are finally letting people into the hearing room, but it only has a capacity to hold 150 people. And it, like so many other public spaces, was not built to accommodate that many wheelchairs. I ask a member of ADAPT if I should try to get into the hearing room as a member of the press or stay in the hallway with most of the rest of the group. “Either way, I think you’re going to see what happens,” he says, smiling.
Senator Orrin Hatch was maybe 10 words into his opening statement when the chanting started. “If you want a hearing you better shut up,” he warned at one point, an odd threat to level against a group of people who did not want a hearing on a bill they also did not want.
“No cuts to Medicaid, save our liberty!” they called back instead, this time even louder. “No cuts to Medicaid, save our liberty!” Hatch banged his gavel uselessly. Chuck Grassley leaned over to tell him to let the police take care of the disruption, as if there was some other option available to either of them.
But removing more than a dozen people, many of them using wheelchairs with intentionally locked wheels, would take some time. When the cops eventually reached Colleen Flanagan, who had set herself up against a wall in the corner, she had been chanting for nearly 12 minutes straight. As they dragged her out of the room in her wheelchair, the sound of her voice turned from a hoarse scream into something more guttural. She wailed the words, eyes closed and face turned up toward the ceiling. A group of photographers closed in around her to capture the moment, and then she was pulled out the door.
“It’s actually the tiniest little piece that goes into it,” Flanagan tells me the next day, when I ask about the arrest. She wears a denim hat pulled down low and looks serene in the soft light coming through the atrium of the Hart Senate office building. Yesterday’s protest disrupting the hearing on the now-defunct Graham-Cassidy had taken less than 16 minutes. The clips that circulated on Twitter and cable news afterwards were distilled down even further, running anywhere from two minutes to 12 seconds.
But for Flanagan, the day’s action had started at 4:30 a.m. and didn’t end until 1:00 the next morning, after she was released from police custody. (She, along with the 17 other ADAPT members inside the hearing room, was charged with “unlawful disruption of Congress.” One of them joked to me that he would put it on his resume.)
And on Tuesday, Flanagan and the rest of ADAPT were right back in the Senate offices, with some of the same cops on duty. This time, they were there to target Senator Ron Johnson of Wisconsin and a few of his Republican colleagues on other floors. They filled his office, overwhelming the man sitting behind the reception desk, until the cops once again cleared them out. They would be back again on Wednesday.
“Getting up that early. Waiting in line. The tight hallways—I get bumped with bags a lot because I’m smaller,” Flanagan says of the work ADAPT does, largely without the kind of press attention the Monday protests received. “You deal with it to be able to get the message out. Medicaid is important to everybody, but it’s a lifeline for people with disabilities. Why am I not worth it?” This is what ADAPT has been demanding for nearly four decades. Someday you’ll thank them for it.
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