May 24, 2018
It was rush hour, but no one could leave the parking garage. Activists from ADAPT, a national disability rights group, hurled their wheelchairs and their bodies in front of AARP employees’ cars so they couldn’t leave. Someone spotted an opening. “You! There,” said one protester to another in a wheelchair, who then launched himself in front of a car, stopping the employee from driving away.
Roughly 200 ADAPT activists last Tuesday surrounded the Washington, D.C. headquarters of AARP, the influential non-profit focused on older adults, barricading exits so no one could leave. Police eventually guided people out of the building. But they only made it as far as the end of the block before activists stopped them again with their bodies.
ADAPT wouldn’t let up until either AARP endorsed a critical civil rights bill, or they were arrested.
“You worked with us to save Medicaid,” an AARP representative told a few ADAPT organizers during the protest, referencing the time when the groups were united and fought to save Obamacare. To this, activists scoffed.
“So when they say ‘we worked together on this’ and they’re not willing to work on our right to life and liberty — it’s completely disrespectful to the disability community because what it says is ‘we will use you as a win for us but we won’t support your right to life and liberty,’” said Bruce Darling, an ADAPT organizer. “We thought we had earned the respect of progressives and Democrats.”
ADAPT protested for six hours in humid, 90-degree heat before police successfully escorted every AARP employee out of the garage — but only after employees were forced to drive on a sidewalk they secured from activists. No one was arrested, and one activist suggested this was perhaps because many protesters were themselves AARP members, though the rationale was not made clear.
ADAPT managed to inconvenience people at Gallery-Place Chinatown, but that was the point. People with disabilities are repeatedly made to feel like this in public as they try to get through their days — AARP and other bystanders only had to experience it for a couple of hours.
“When it comes to civil disobedience, and that level of activism, it really is, and always has been ADAPT,” said Rebecca Cokley, a disability rights activist and senior fellow at the Center for American Progress (CAP). ThinkProgress is an editorially independent news site housed at the Center for American Progress Action Fund. “They know how to catch lightning in a jar, and over the last several years have become extremely strategic in both their scheduling and where they go and who they visit.”
ADAPT is the country’s only direct action advocacy group focused on disability rights. It’s a decades-old organization that garnered national attention last summer after Capitol Hill police dragged ADAPT demonstrators in wheelchairs and with assistive canes out of Trumpcare hearings. They were protesting the Medicaid cuts that would have severe repercussions for people with disabilities.
“People for the first time on national television saw disabled Americans being dragged away and disappeared, but that for us happens everyday. They are taken from their homes and forced into institutions,” said Bruce Darling, an ADAPT organizer. “We are just dramatizing the conflict.”
It’s this tactic that earned ADAPT credit for helping save Obamacare. And it’s also what led to recent, incremental wins for a bill that’s been years in the making: the Disability Integration Act (DIA). After staging multiple protests within 24 hours last week, ADAPT secured endorsement for the bill from the Center for American Progress, as well as meetings with AARP and the Heritage Foundation (though the latter also played a prominent role in pushing for the repeal of Obamacare). Throughout the week, ADAPT protesters visited lawmakers’ offices to demand support for DIA.
The objective was to garner as much support from lawmakers and prominent think tanks, planned with an eye toward the midterms. “We want disabled Americans to know which candidates support their life and liberty and which are okay with them essentially being locked up,” said Darling.
ADAPT’s been working for 2.5 years fo pass DIA, but unlike the health care fight over the summer, the activism around DIA is getting minimal attention in many mainstream news outlets.
So what is it? And why has it barely registered on so much of the American public’s consciousness?
The Disability Integration Act, explained
The story of the Disability Integration Act begins with the fight to pass the Americans with Disabilities Act (ADA) of 1990.
The ADA outlawed discrimination in public and private settings, and began to make it easier for people with disabilities to work and get around their communities. Cokley calls it “probably the widest reaching civil rights legislation since the Civil Rights Act of 1964.”
But one area the ADA did not truly address was the need to make it easier for people with disabilities who required long-term care to live in their homes instead of being institutionalized.
“[I]n recent years, as we’ve seen the institutional bias wax and wane, our colleagues in ADAPT and the disability community writ large have been fighting for the right to live in their homes, for the right to age in place, to receive the services that their lives depend on in their home, in their communities, with their families, versus being warehoused against their will in an institutional setting,” said Cokley.
At times, the courts helped on this front. In 1999, the Supreme Court ruled in Olmstead v. L.C. that the ADA actually required public entities to provide people with disabilities appropriate community-based services, when those services can be accommodated.
Put another way, when someone with a disability does not prefer to live in a nursing home, psychiatric unit of a hospital, or other institution, states, counties, and cities have to do their best to find home-based solutions within the community. Solutions like providing a home health aide are actually half as expensive as housing someone full-time in a nursing home, and they can allow the person to lead a fuller, happier, and more productive life.
However, many states were not providing the services their residents needed. While the Affordable Care Act attempted to provide states with more Medicaid funding to do this via the Community First Choice State Plan, only eight states offered it as of 2016. The Senate Health, Education, Labor, and Pensions Committee concluded in a 2013 report that this needed to change, most efficiently by amending the ADA by requiring states to allow residents with disabilities the choice of where they want to live and receive services.
This is called strengthening the ADA’s “integration mandate,” and something the Disability Integration Act tries to address. While the legislation would not directly amend the ADA, ADAPT’s website says it “strengthens Olmstead’s integration mandate and creates federal civil rights law which addresses the civil rights issue that people with disabilities who are stuck in institutions cannot benefit from many of the rights established under the ADA.”
It might seem like a no-brainer to get unanimous consent for a legislative solution to a problem that affects millions of Americans, and that supporters argue would save taxpayer money while easing the regular daily struggles of people with disabilities and those who support them.
The DIA was introduced in the current Congress by Senate Minority Leader Chuck Schumer (D-NY) and Rep. Jim Sensenbrenner (R-WI) and has been steadily gaining cosponsors. But passage is by no means a done deal. Organizers still face significant hurdles.
“We struggle on both sides of the aisle with this bill,” said Darling. “Conservative politicians make a lot of money from donations they receive from those institution owners. Progressives get a lot of donations from the unions that organize within the facilities.”
AFSCME, the labor organization that represents many health care workers, has spent millions on Democratic campaign efforts, and the nursing home industryhas contributed millions to both Democrats and Republicans. ThinkProgress asked AFSCME if it supported the DIA or had a position on changes to long-term care policy and a spokesperson declined to comment.
How ADAPT gets a bill passed
Heath Montgomery, along with 200 other ADAPT activists, visited every House members’ office last Wednesday, explaining to representatives’ staff why they should support the DIA. That day, they got six more lawmakers to support the bill. So far, 107 have — 18 senators and 89 representatives from both sides of the aisle. This support and ongoing negotiations with prominent D.C. think tanks have activists feeling pretty optimistic.
“The focus has been on disabled folks putting their bodies on the line, but there’s been less conversation about why,” said Cokley. “What is it that they’re actively fighting for? Because yes, they’re fighting for Medicaid, but they’re also having a conversation about the institutional bias that’s inherent within Medicaid, and the fact that a lot of these programs do need to change, and do need to evolve in ways that could enhance the freedoms experienced by disabled Americans beyond just ‘oh, Stephanie Woodward was being pulled out of her wheelchair again’ — actually why, Stephanie, why are you fighting for this, why does it matter, and what does action look like, and what does ADAPT want to see?”
Many activists admitted it’d be strange for President Donald Trump to sign the next big disability rights bill into law, given the president’s offensive comments on the campaign trail and regressive policy thereafter. But a win’s a win, and bipartisan support for this bill is growing, said various ADAPT members.
Activists are drawing inspiration from demonstrations that led to the passage of the ADA. Heath for one is motivated by other young disability activists. At 9 years old, Heath is the youngest member of ADAPT and just one year older than Jennifer Keelan, who in 1990 became a symbol for the disability movement when she tossed aside her wheelchair to ascend the Capitol steps. This was known as the “Capitol Crawl,” a demonstration meant to illustrate the need for accessibility. That year, the ADA passed.
“His life is built on the foundation that this movement created,” said Heath’s mom Jenny. Heath is living with cerebral palsy, a neurological disorder that affects body movement and coordination. “Everytime he rides an accessible bus, everytime he goes into an accessible building — that is because of ADAPT.”
“Part of what we’re excited to see is the attention and awareness in progressive communities that people with disabilities are valuable allies and that they are a constituency group that can be incredibly powerful in fights like as you saw in the health care fight where I think you saw progressives rightly crediting them with putting their bodies on the line in a way that was transformational in that debate and that in many ways saved the Affordable Care Act and Medicaid,” said Rebecca Vallas, vice president for the Poverty to Prosperity Program at the Center for American Progress.
She argued that progressives need to avoid inadvertent tokenism by ensuring that people with disabilities “need to be at the table for agenda-setting, for policymaking, that we need to be centering disability as we think about our broader agenda, not just as an outreach or a media strategy.”
ADAPT started as Americans Disabled for Accessible Public Transportation but later changed to Americans Disabled Attendant Programs Today. It got its start in 1983 in Denver, Colorado initially focusing on getting wheelchair accessible lifts on buses.
Technically speaking, there isn’t a national ADAPT organization. Rather, it’s made of roughly 30 state affiliates across the country. They’re a distributed, guerilla-style, 501c(3) non-profit organization, have almost no overhead, and no central office. Members of each state group meet twice a year to prioritize an issue. Last fall they were on the defensive, protecting Medicaid. This spring, they’re on the offensive, advocating for DIA.
“Our approach is really to build on our strengths: we get in the way. If we go out to a restaurant, we are blocking up things,” said Darling. “We are comfortable with that. It makes everyone else very uncomfortable to have to climb over people with disabilities and to have to deal with us.”
It’s this strategy that got AARP’s attention. Activists capitalized on the fact that AARP employees didn’t know what to do when protesters surrounded their cars. But sometimes activists’ wheelchairs are used against them. At one point during this protest, a police officer took the key from someone’s powered wheelchair, effectively paralyzing them. In another instance, three police officers physically carried away a man in a wheelchair who was protesting.
And these tactics have mixed results. A day before, activists staged protests at the offices of Sens. Patty Murray (D-WA) and Lamar Alexander (R-TN) to get their endorsement. Murray’s staff agreed to cosponsor the bill, but at Alexander’s office, 20 activists were arrested.
ADAPT is a leaderless resistance. While conventional wisdom is leaderless movements are impossible to maintain, ADAPT appears to make it work. Two to three people set the schedule last week and knew where all the staged protests were, while everyone else was left in the dark until they arrived at the demonstration site.
“For me, as a disabled person, I’m constantly dependent upon those around me and in general I have trouble trusting,” said Sheryl Grossman. “When I’m amongst my own here we’re all at some points in that space and we know what it feels like and so we learn to trust each other. And I know that any one of these folks would have my back in a split second.”
This is why ADAPT is bigger than just the policy they advocate for, dozens of activists told ThinkProgress. For Charles Miller, ADAPT is where he learned about wheelchair maintenance. For Cheryl Gottlieb, it means not having to worry if her ride to an event is wheelchair accessible. And for many, ADAPT is the epitome of community integration done right.