For two or possibly three days this last summer, the entirety of American political culture was shaped by the activism of the disability rights movement. Led by the direct action group ADAPT (profiled in Pacific Standard first last spring and covered throughout the summer), disabled activists seized control of the narrative around Trumpcare and never really let go. As the GOP vows to return to its Trumpcare efforts in 2018, it’s worth looking back at how exactly Republican attacks on Medicaid were derailed. ADAPT’s presence in Washington, D.C., was no accident. The group’s ability to command media attention and use the power of civil disobedience came through years of practice. ADAPT has been training for this moment, but its members also recognize that this can’t go on forever. Last fall, when I called up longtime ADAPTer Adam Prizio, he told me, “A system that requires heroic effort to function normally is doomed to fail.”
Over the fall and winter, I’ve been speaking to many ADAPTERS about their experiences during the “#SummerofADAPT,” a hashtag and rallying cry that Prizio created in what his colleague Gregg Beratan calls a “moment of genius.” The message was consistent. The actions we saw last summer were not frantic, ad-hoc efforts born of simple desperation at the assault on Medicaid—although that threat is real. Instead, ADAPTers would like to be understood as one of America’s most practiced and effective civil disobedience organizations.
To tell this story and make the work behind the rallies apparent, Pacific Standard spoke to Anita Cameron. Among disability rights activists, Cameron is legendary. She’s been performing acts of civil disobedience for almost four decades, with over 130 arrests. She also pushes the disability community to confront issues of race, class, sexuality, and other aspects of intersecting justice within its own ranks.
Looking back on the summer, how are you feeling?
We won a couple of battles, but this war is not over. We have to remain ever vigilant, and whether they try to tuck it away in tax reform, they’re going to keep trying to [cut Medicaid] until they finally give up or they get this passed. ADAPT, we’re vowing to keep that from happening, so we’re going to be out there fighting—and you know, if some of us have to get on the bus to go to wherever [to protest], then [we’ll go].
How do you prepare for your actions?
I’ve been in ADAPT for over 31 years. So to me it’s almost like breathing. We usually know, other than emergency actions that came up through the summer, what’s coming up. We have two actions a year, usually in D.C. We usually don’t know exactly what we’re going to be doing or where we’re going to be going.
Do your protest targets know you’re coming?
There has to be an element of surprise!
Usually, for me, a couple of weeks out is when the excitement starts happening. I get that excitement, and I’m preparing myself mentally for anything that may happen. And then in Rochester [New York], we get a bus and we take at least 30 folks with us. Once we get to D.C., it’s exciting because it’s almost like a family reunion.
I’m interested in the longer-term preparation too. How do you get ready for the whole trip? What do you tell newcomers?
When the actions are coming up in the spring or the fall, about six weeks out, we have trainings every couple of weeks because we always have new people. We tell them what it’s going to be like, how to pack the bags so people’s stuff doesn’t get thrown away. We tell them what to expect, the do’s and don’ts. We tell them about civil disobedience and non-violence. Critical things like bringing your meds in a prescription bottle, in case you get arrested, [so] your meds aren’t confiscated as unknown drugs.
Usually our last meeting is the week of the action, and we do a mock action. And then afterwards we go over what happened.
So you stage mock actions to practice? What are those like?
It can be anything! It’s usually taking over something: An office, a bathroom, whatever, to simulate, as close as possible, what you do [in a real protest]—the adrenaline, the chaos, to give people a feel what to expect.
On Sundays [before actions] we have our legal meeting; it goes into into the history of ADAPT, civil disobedience, and why we use that. And we have published an activist guide. I wrote the part about intersectionality. I’m black. I’m disabled. I’m a lesbian. And I worked in the LGBT community before I joined ADAPT. Once I joined ADAPT, I spoke out pretty much about disability discrimination for 25 years. But when Michael Brown got killed, I really decided that, look, I can’t separate my identities and my intersections of oppression from disability.
Also, we [must] pay attention to our walking folks who may be helping to open doors. The police sometimes will grab the folks who are walking. Just because you’re walking doesn’t mean you’re non-disabled, but they’ll assume the walking folks are non-disabled. They assume that if they grab the walking people, the folks in wheelchairs or mobility devices will somehow run away.
That has never happened.
No! Not in the 35 years of ADAPT has that ever happened.
We know what we’re getting into. Especially us veterans who’ve been around a few years, a few decades. In comparison [with back then], we’ve got it a little easy. Back in the day, when the police really didn’t have any idea of disabled folks, they’d pull us out of our wheelchairs and scream at us to walk. I used to get beat up on the regular by the police. As ADAPT grew, in many ways, and became more powerful and getting to the table more, especially in Washington, D.C., the police, they weren’t as likely to do that.
In this administration, police have been a little rougher with us, and our actions—just out of necessity—have been a little more grueling and intense, kind of like it was back in the day.
What don’t people understand about ADAPT?
We are fierce activists who know what we’re getting into. We’re not some mindless lemmings following behind the pied piper. We know.
Two big things people mistake ADAPT for: That we’re only for people in wheelchairs, and that you have to get arrested. We’re cross-disability, and the getting arrested part is optional. We know that and we’re willing to do it. I had my 132nd arrest on this action [in the fall]. I feel so passionate about what we’re doing that I am willing, more than willing, to get arrested for it.
That’s just the life of a warrior, a civil rights activist. These are things that one does—those of us who can get out in the trenches. We have a measure of privilege. I have a measure of privilege to be out in the streets and the trenches to get to where I need be. There are people who cannot, whether it’s because of their disability, their personality issues, their job—for whatever reason, they cannot do it. Whether they are stuck at home or stuck in bed, I appreciate all forms of activism. You can’t get out in the street, then sign this petition or signal-boost information. Be an observer. There’s so many ways to do activism. And I think a lot of times in the disability community in general, we sometimes forget that, or it’s a measure of ableism on our part; but not everybody can get out in the street.
What’s coming next?
We are trying to get co-sponsors for the Disability Integration Act. The act is legislation that will give people with disabilities the right to live in the community with the services and supports that they need. Our previous bills (Community First Choice, etc.) were written for medicaid programs. This was written in a civil rights framework: It’s the civil right of people with disabilities to live in the community. The bill addresses transportation, housing, services, and supports in the community. Insurance companies will have to pay. It’s a bipartisan bill with bipartisan support. ADAPT is non-partisan. We pick on Democrats and Republicans and independents all equally.
If you’re messing with our civil rights, you’re going to hear from ADAPT.