The final push to save the country from the Graham-Cassidy proposal to repeal the Affordable Care Act (ACA) began on September 25 at 8 am, with a massive line of people extending from the Dirksen Senate Office Building to the Hart Senate Office Building in Washington, DC.
Epic lines like this one typically form for Bruce Springsteen concerts, the Super Bowl, or the latest iPhone. But this time, the big event was… a Senate Finance Committee hearing.
I had headed to DC along with members of affiliates of the organization where I work, Center for Popular Democracy, and with people who had trained in political tactics with Housing Works, the nation’s largest community-based AIDS advocacy organization. We had come to join hundreds of others to try to save our health care. As far as the eye could see, the hallway was crammed with bodies—young and old; black, brown and white; women and some men—but definitely more women, so many women. Many were accompanied by wheelchairs and walkers.
Despite the high stakes, the mood was jovial and energetic. People were happy to wait. But when, shortly before the hearing was to begin at 2 pm, the doors to the hearing room were closed and the activists shut out, this mass of friendly, patient bodies snapped into action. In a matter of moments, they transformed from a group of people calmly waiting to attend a hearing into a fierce army of nonviolent, civil-disobedience activists.
Among the first to take action were members of ADAPT, the national grassroots disability-rights organization. As soon as they were denied access to the hearing, they began chanting—“Kill the bill, don’t kill me!”—as they refused to move their wheelchairs. Meanwhile, members of what we have come to call “Birddog Nation” sat on the floor and blocked access to the elevators, even as Capitol Police forcibly removed and arrested them.
For many of the protesters, this was a case of putting their bodies on the line—literally. Kati McFarland, a pre-med student from Arkansas who requires a feeding tube and walker as a result of complications from Ehlers-Danlos Syndrome, was one of these fearless activists. She collapsed during the wait, but got back up and back in line.
Also in line was Elizabeth Deutsch, a nurse whose severe peanut allergy was triggered as she waited for the hearing to begin. Shortly before the actions commenced, she collapsed. By the time the two EpiPens in her bag were administered, her hands and feet had started to turn blue.
In the end, 181 people engaged in nonviolent civil disobedience that Monday afternoon, with many getting arrested for the second or third time during the last few months. But the struggle didn’t end there. As the day continued, those who didn’t get arrested kept up the pressure by descending on the offices of key congressional targets and holding press conferences. And the next morning, they were back in action, lobbying their Senators, attending civil-disobedience trainings, preparing for more actions. By 1 pm, about 20 people had descended on the Capitol Rotunda and lain down, blocking entrances to the internal subway that shuttles members of Congress from their office buildings into the Capitol.
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And then, as the protesters were being carried away, cell phones starting sending alerts: Mitch McConnell had announced that the Republicans had decided to put off the vote. The disastrous Graham-Cassidy proposal had been defeated.
The media promptly credited the three recalcitrant Republicans who had balked at backing the bill—Senators John McCain, Susan Collins, and Lisa Murkowski—with sealing its demise. But as I looked around the cheering crowd at a victory party on the Capitol lawn—as I scanned the crowd of activists with their canes and wheelchairs, the many, many women, the veteran HIV/AIDS warriors who’d shown up for the fight—it occurred to me that media were missing the story, again.
I’ve spent the past seven months traveling across the country to train anyone who was interested in the political tactic of “birddogging,” or following your elected official to talk to them, question them, press them about health care. Together, with two colleagues from Housing Works, I have trained over 1,500 people in more than 66 towns and cities.
When we began, I had no particular image of the people we would be organizing. Our method was to recruit people via emails and Facebook posts, and we had only one simple rule for them: If you can find 15 people and reserve a room, we will get to you. Yet over time, patterns and themes emerged: Whenever we entered one of those training rooms, which were often filled with at least 100 people, I would find that the attendees were mostly women. This happened so many times that it stopped feeling like a coincidence.
I’m always hesitant to make gendered statements, but it became glaringly obvious to me that the resistance to the Trump administration—and to the repeal of the Affordable Care Act more particularly—was being powered by women. At nearly every training, the ratio of women to men was notably lopsided—as many as ten to one. At a training in Tampa, Florida, I counted 97 women and one man.
Gradually, as the fight intensified—after months of being denied access to elected officials, and as Republicans began mounting repeated efforts to destroy health care—people began asking to learn other tactics, such as non-violent civil disobedience. The Center for Popular Democracy and our partner, Housing Works, organized several mass actions where the people we trained got arrested in front of the offices of their elected representatives in Washington, DC. Here, once again, women were disproportionately willing to put their bodies on the line.
These women came from all walks of life, all parts of the country. They were women who were activated, or reactivated, by the Women’s March, like Molly Sandley, who began arranging the travel booking for the Birddog Nation after successfully organizing buses for the march. And they were mothers like Rebecca Wood, from Virginia, who was motivated to fight out of concern for her daughter, Charlie. Charlie, was born extremely premature and, as a result, is facing a lifetime of medical complications and has already reached her lifetime cap.
They were also women like Kimberly Benyr, from Arkansas, another mother galvanized by love for her daughter. Benyr’s daughter had autism, but, at the end of August, she was diagnosed with cancer as well. After months in the trenches, Benyr had to take a backseat, but, even then, she asked her friend, Daniella, to show up at legislators’ offices in her place, with photos, to tell her family’s story.
Amazingly, Benyr returned for the September 25 hearing for Graham-Cassidy, just one week after her daughter’s funeral. Benyr showed up determined to fight for the other kids who were in the Children’s hospital in Little Rock with her daughter. She did this even though she was experiencing a grief so deep that most of us wouldn’t be able to walk.
Still, it hasn’t only been women who have stepped up to try to save health care.
As time has gone on, more men have joined the effort. For the series of direct actions that we organized nearly every other week from the end of June until Congress broke for recess end of July and then twice again in September, the gender balance was somewhat less lopsided. Notably, though, the men who showed up were predominantly queer or living with HIV/AIDS. Our actions also saw a relatively large number of transgender individuals.
All of this makes sense in the context of a health-care fight, of course; the people who had the most to lose were the most likely to fight like hell to hold on. This has been particularly true of the fierce and unrelenting people with disabilities who have played an outsized role in the struggle to save health care. Ben Wikler from MoveOn, who came up through the AIDS movement, tweeted: “In 2017, the cavalry doesn’t ride in on horses. It rides on wheelchairs”—which pretty much summed up what happened. In a campaign where no one on the left had any inside game, no billionaire was going to save us, the only strategy was to hold the moral high ground and believe that the best of us would prevail.
It was an audacious strategy—all the more so in a world where the disabled are openly mocked by the man who’s now the president of the United States. But it worked. Dozens of hard-core disabled activists, moved into action by the national organization ADAPT, slept at the Hart for a week in July and then, of course, jammed up the hallways in September as the Graham-Cassidy proposal seemed set to sweep the Senate.
It would not be hyperbolic to say that ADAPT’s direct actions won the fight for health care for the rest of us. Particularly given the widespread government antagonism toward the ACA—nearly every branch of government is aligned against it—the power of the disability-rights community can’t be overlooked. In fact, it is hard to envision winning progressive policies in the next four years without it.
I cut my teeth in the AIDS movement. The victories that have come from that world are mind-boggling, all the more so when measured against the achievements of other campaigns. People with HIV/AIDS won an entire new funding stream totaling over $3 billion through the Ryan White CARE Act, the Housing Opportunities for Persons with AIDS program, the President’s Emergency Fund for AIDS Relief, and the Global Fund to Fight AIDS, Tuberculosis, and Malaria. The creation of these large-scale new budget programs have provided treatment to millions of Americans, created tens of thousands of affordable-housing units for homeless people living with HIV/AIDS, and, most important, saved lives.
But the impact of the AIDS movement is even more impressive when you consider that it transformed how medicine is practiced in the United States. The AIDS movement emphasized the need for patients to be informed and have agency in their care—ideas that were radical at the time. While work remains to be done, this has led to a shift in medical culture towards a more egalitarian approach to care.
And this, in many ways, is where today’s fight for health care has picked up. Working together, the ADAPT activists, the old ACT UP–ers, and the Birddog Nation women have been fighting to deliver us into the age of universal health care and patient-centered, rather than profit-driven, health care.
Of course, the fight isn’t over. As I write this, the elation that we felt after defeating Cassidy-Graham has already begun to wane. I had learned from the enormous victory we achieved in July when we defeated “skinny repeal” that it would be short-lived. And now, just weeks after Graham-Cassidy imploded, Trump has taken it upon himself to dismantle the Affordable Care Act through an executive order and a decision to no longer provide funding to states to make insurance plans affordable. As Trump said, “there is no Obamacare, it’s dead”; instead, there is Trumpcare, a stingy, mean-spirited creation with no real budget for advertising the enrollment period and with enrollment websites shut down on Sundays.
In the short term, the hope on the horizon is a real bipartisan solution like the one being proposed by Senators Patty Murray and Lamar Alexander. We will see if people power can stabilize health care and push for universal health care in 2020. With five successful victories under our belt in the past few months, the women, queers, disabled people, and people of color who have been fighting to save health care will certainly be putting our bodies on the line—again. Hopefully, this time everyone else will join us.
