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‘Our Lives Are at Stake.’ How Donald Trump Inadvertently Sparked a New Disability Rights Movement

12 minute read

One day last March, Kings Floyd’s boss came into work and asked if she’d like to get arrested.

At first Floyd, 23, did a double take. Floyd has muscular dystrophy and worked at an organization that advocates for people with disabilities, but had never been very political. But when she learned about the Republican health care bill that would repeal parts of the Affordable Care Act and make cuts to Medicaid, she decided to join more than 50 disability-rights activists in a protest in the Capitol Rotunda. Brand new to activism at the time, Floyd proudly recalls that she was one of the last people left chanting as police took protesters out of the rotunda one by one.

“That event changed everything,” she says. “I realized I had a responsibility to support my community.” In the year since that first protest, Floyd has revived her area chapter of the national disability-rights organization ADAPT, gotten arrested several more times for demonstrating against various proposed laws and spoken at the Women’s March anniversary event in Washington.

Floyd is part of a new wave of activism by disabled Americans who want to change the way disability is viewed in the U.S. Responding to federal policies they feel are threatening their community on issues from healthcare to education to fundamental civil rights, more people with disabilities are getting politically involved. Others are trying to build a political movement to define disability—roughly one in five Americans has one, according to the Census Bureau—as a form of personal identity, much like race or sexual orientation.

The push to recognize disability rights is not new, but it’s no coincidence that this current of activism surged during the first year of Donald Trump’s presidency. “It’s far more intense,” says Anita Cameron, a veteran disability activist who has been arrested more than 130 times with ADAPT, the grass-roots disability rights network. “We really feel our lives are stake.”

During his campaign, Trump promised not to touch entitlement programs. Since taking office, however, he and the GOP-controlled Congress have pursued an agenda that could have outsized consequences for disabled Americans. Each of the GOP’s proposals to repeal the Affordable Care Act included cuts to Medicaid, the main health insurer for adults and children with disabilities. Medicaid covers services that other insurers typically do not, such as personal care assistants and lifts that allow people with disabilities to live in their own homes and communities. While the ACA repeal attempts failed, the Trump administration has now allowed states to enact work requirements for those who receive Medicaid—a policy change that experts say will likely result in many disabled people losing coverage.

Affordable Care Act repeal attempts drove activism

The backlash from the disabled community was fierce. Activists staged a “die-in” at Republican Senate Leader Mitch McConnell’s office last June, while members of ADAPT organized an average of three protests per day across 30 states over the summer, according to national organizer Gregg Beratan. The demonstrations helped grow the group’s ranks: at least 10 new chapters have emerged since Trump took office, according to ADAPT’s Cameron. Larger chapters, like the one in Denver where ADAPT started, have seen increases in membership and donations. Before the 2016 election, the Denver chapter typically raised about $10,000 each year. In 2017 they doubled that sum. The American Association of People with Disabilities launched a National Disability Voter Registration Week in 2016; last year the number of voter registration events rose nearly 400%. An estimated 45,000 people with disabilities attended the Women’s March on Washington last year, making that day likely the largest gathering of disabled people in American history. For those who could not go in person, an online Disability March drew more than 3,000 participants.

Since disabled people often don’t have access to transportation and may not know others in their area who share their disability, many engage in activism through the Internet. Campaigns like #CripTheVote, started in 2016 by Beratan and activists Alice Wong and Andrew Pulrang, have encouraged disabled people to become politically active and sparked conversations about topics ranging from opioids and chronic pain to disability and identity under Trump.

“I didn’t know disability activism existed until I went on Twitter,” says Kayla Smith, a 20-year-old with autism in Winston-Salem, N.C. Smith joined Twitter just as the presidential primary season was heating up in 2015. “I remember asking why I’d heard about civil rights for African Americans and other groups but not for disabilities,” she recalls. Now Smith plans to start a disability club at her community college later this year. She frequently tweets about disability news, commenting on everything from disabled representation in pop culture to the latest Medicaid update.

Others are channeling their energy into running for office. No organization currently tracks disabled candidates, but advocates say there are more candidates openly discussing their disabilities than in recent cycles, from local school board and town council races all the way up to Congressional contests. “It’s time for those of us who have disabilities to step out and do what we can to assume leadership positions to bring visibility to our community,” says Reyma McCoy McDeid, a non-profit executive who is autistic and running for a seat in Iowa’s House of Representatives.

One of the most important goals for many disability advocates is getting people outside the community to see disability rights as a movement that extends beyond existing stigmas to encompass a broader political identity. Though the general population often views disabilities as inconveniences to be pitied or tolerated, advocates are proud of their disabilities and view them as essential to their identities in the way that many view race, ethnicity and sexual orientation. Academics point to strong links between disability identity and political involvement. When someone attends a protest or joins an activist group for the first time, they are likely exposed to ideas they hadn’t previously encountered, which can make them see their own experience in new ways, says Michelle Nario-Redmond, a psychology professor at Hiram College in Ohio who studies disabilities and political advocacy.

Floyd and Smith both followed this pattern. Smith’s explorations on social media led her to discover her identity, while Floyd wasn’t thinking about politics until her boss at the National Council on Independent Living (NCIL) invited her to the ADAPT protest. They’re also part of what some call the “ADA generation”: young adults who grew up largely after the Americans with Disabilities Act established civil rights protections for disabled people in 1990. “Up until this point, we have been fortunate in that we haven’t had to fight in the trenches like some of our predecessors,” says Anjali Forber-Pratt, an expert on disability and identity at Vanderbilt University who is also part of this generation. The threat of Trump’s policies, she says, is playing an important role in identity development. Research backs this up: a study published in the journal Rehabilitation Psychology last summer found that stigma or discrimination makes people with disabilities much more likely to proudly identify with the disability community.

That’s what happened for Jordan Sibayan. As a child growing up in Denver, Sibayan says he often felt discouraged by his muscular dystrophy. He wanted to be “normal.” But when Sibayan attended an ADAPT youth leadership training program in 2016, he learned how to effectively plan direct actions and lobby lawmakers. And once the Trump administration began proposing legislation he saw as an explicit threat to his community he threw himself into disability activism. “I felt like this is what I should be doing with my skills and my energy and my passion,” says Sibayan, who has now traveled to Boston, Washington, D.C., and to GOP Senator Cory Gardner’s Colorado home to protest with the group he describes as his family. “I’ve gained a sense of pride and self-worth that has taken a long time to develop,” he says.

Disability rights groups push for systemic change

As more young adults discover their sense of identity, the disability community is becoming more aware of how its concerns intersect with those of other minority groups. In 2018, this means both listening to people of color and LGBT individuals in the disability community, as well pushing for broader advocacy networks, such as the Women’s March, to include disability issues as part of their agendas. “Now we’re all forced to pay attention to what each others’ individual groups have been doing so that we can come together and be this coalition,” says Vilissa Thompson, a social worker and disability consultant in South Carolina who founded an initiative called Ramp Your Voice! to highlight the experiences of black disabled women.

The next step, activists say, is to capitalize on the conversations around identity and turn their community’s passion into political clout. One obstacle is that politicians have not typically tried to win the disability vote in the way they have with black or Latino voters, for example. Voter turnout rates among disabled people have remained stubbornly low in recent years, according to data collected by Lisa Schur and Douglas Kruse at Rutgers University. Even for disabled people who do plan to go to the polls, voting can be a challenge: voter ID laws may mean an extra hurdle for those who don’t drive, and 60% of polling places reviewed by the Government Accountability Office in 2016 had one or more impediments, such as steep entrance ramps or poorly maintained paths into the building, that could prevent a disabled person from casting a ballot.

But the potential is there for the disability community to become a powerful political constituency. Nearly 57 million Americans have a disability, according to the Census Bureau, making the group the country’s largest minority. And despite the groundswell of protest against Trump and the GOP this year, disabled people do not especially favor one political party. Roughly 50% lean Democratic, according to the Pew Research Center, and 42% lean Republican. “That’s one of the hopeful things about this,” says Rutgers’ Kruse. “Because people with disabilities are not particularly aligned with one party or the other, both parties have incentives to get them out to vote.”

So far, Democrats have taken more steps in this area. The party highlighted disability rights at its 2016 convention, and in the last year and a half it has created a national disability council and hired a staff member to oversee disability outreach. “I’m seeing disability policy, disability activists and accessibility embraced in new and exciting ways,” says Rebecca Cokley, a former Obama Administration official who the liberal Center for American Progress hired in September to create the first disability policy hub at a mainstream progressive think tank. Before Trump, Republicans had a mixed history on disability rights. Politicians like former Sen. Bob Dole have led on the issue, and President George H.W. Bush signed the ADA into law in 1990. But GOP lawmakers rejected a United Nations treaty on disability rights in 2012.

Disabled people still want members of both parties to champion their policy goals. Many activists have focused on opposing the ADA Education and Reform Act, a bill sponsored by Republican Rep. Ted Poe that recently passed in the House and which disability advocates say would create obstacles to enforcing the ADA. Others have gathered bipartisan support for the Disability Integration Act, a piece of legislation in committees in the House and Senate that aims to prevent institutionalization by requiring governments and insurers to cover home- and community-based support services.

Activists also want to harness the energy from the last year to establish more formal support networks for disabled people to run for office. While groups exist to help other minorities launch campaigns, there is no national organization that currently recruits or trains disabled candidates.

For McCoy McDeid in Iowa, the lack of a disability-focused program has been frustrating. “If there’s something that’s available to every other population but one, it sends the message subconsciously that that one population is not appropriate for office,” she says. “And that’s obviously not true.” Sarah Blahovec at NCIL has spent the past year developing a program she hopes will be the country’s first disability-focused candidate training operation. If she can secure funding, she says, it will likely launch in 2019. Another group, the Disability Action for America PAC, started in December 2016 and has raised close to $20,000 to support disabled candidates. While it is still working to build up its modest fundraising, the PAC is focused on promoting candidates on social media and endorsing those who support disability rights in 2018.

Back in Washington, Floyd is looking for her next job in disability advocacy. She helps lead regular meetings of the D.C. Metro ADAPT chapter and feels excited by progress she’s seen this year. At the same time, she knows this is only the beginning. Lawmakers may not be done trying to repeal aspects of the ACA or rolling back guidelines on education for students with disabilities. Even when activists successfully block one proposed policy, there always seems to be another on the horizon. “It’s like whack-a-mole. Every time one goes down another one comes back up,” Floyd says. “I think you just have to keep playing.”

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Write to Abigail Abrams at abigail.abrams@time.com