The woman in the wheelchair is resolute. Her voice does not waver; her message does not change. “No cuts to Medicaid!” she shouts. “Save our liberty!” She is a rock, borne away by a police officer who grips the handles of her wheelchair. Behind her, another activist follows, with the same chant, with the same resolution on his face. “Save our liberty,” they say, and it is not a plea. It is a demand.
This is one moment, but recently there have been many like it, constituting some of the most effective protest imagery in recent memory. The woman in the video is an activist with National ADAPT, a group that has harried Congress with one legislative objective: to defeat every iteration of Obamacare repeal that Republicans propose. So far, they’ve won, but in many ways the war has just begun. ADAPT’s protests aren’t designed just to defeat legislation, but to defeat the ideology that inspires this legislation. And so they ask you to consider other questions. They ask you to think about yourself.
In form and in function, ADAPT’s recent protests resemble the Capitol Crawl in 1990. That protest, accomplished by activists who pulled their bodies up the steps of the U.S. Capitol, helped force the passage of the Americans with Disabilities Act. ADAPT organized the crawl, and had been participating in such direct actions since the 1970s. Dominick Evans tells me that ADAPT’s confrontational tactics are modelled after those deployed by the civil rights movement. “It’s very effective at getting the message out,” Evans explains. “They can’t ignore it if they’re constantly arresting disabled bodies.”
ADAPT’s protests simultaneously acknowledge and subvert the spectacle that able-bodied people make of disability. “Everyone who is born holds dual citizenship, in the kingdom of the well and in the kingdom of the sick,” Susan Sontag wrote in “Illness as Metaphor.” Though Sontag chiefly examined cancer and tuberculosis, society implies a similar bifurcation between individuals who have disabilities and those who do not. Living with an inherited disease, I learned long ago that people who dwell in the kingdom of the well impose their own meanings on the kingdom of the sick.
When people look at a woman in her wheelchair, they may experience pity. To them, people with disabilities exist either to demonstrate the mystery of God or the capriciousness of biology. But their pity is driven by the deeper fear that some accident or onset of permanent disease will shunt them into this shadow kingdom and there will be no escape.
ADAPT’s activists don’t want pity. Pity reduces, dehumanizes. Pitiful people are objects and objects cannot fight. When people with disabilities protest, then, in public and physical ways, they grab hold of old stereotypes and point them back at their creators. “We are putting our bodies and our lives on the line for this, but we know what we’re getting into,” says Anita Cameron, an ADAPT activist who participated in the Capitol Crawl. “I think that’s the message that needs to be sent out, because everybody looks at, ‘Oh, those poor disabled people, getting arrested! Oh, those poor disabled people, being pulled out of their wheelchairs.’ No, we’re not those poor disabled people. We are strong, fierce activists fighting not only for ourselves, but for others too.”
The goal of these protests is not to replace one spectacle with another. Integration is one of ADAPT’s original, enduring aims, which means they hope to create a world that treats disabilities as if they are banal. “When I say live, I mean to truly live. To live in the community, to work, to raise a family, to have cats and eat a ridiculous amount of pizza rolls and cheeseburgers like I like to do,” one activist recently wrote in Vox. Disability isn’t a superpower any more than it’s evidence of innate inferiority. “I don’t think any of us want people to be thinking about our bodies in general,” Evans says. “What they need to be thinking about is that people are going to die. It’s life or death.”
In the United States, disabled bodies are disposable, a guarantee of perpetual second-class status. Whether via institutionalization or sterilization or a lifetime spent bearing “pre-existing condition” about the neck, living as a disabled person in this country has historically meant living subject to a specific bureaucratic evil. Our market-based health care system is concerned with profit, and it long ago decided that disabled bodies are not worth very much. Whenever that paradigm has shifted, it is because the people who own these bodies have jammed the gears. And they will continue to do so until we collectively agree that health care is a human right.
Every arrest, every dragging, every shout, displays strength and not weakness. They merit neither pity nor worship—only respect, and your dedication to a different, fairer world.