The Women with Disabilities Who Fought For Your Health Care This Year
Mass "die-ins," three-day sit-ins, and countless arrests later, these activists say: "The fight for our lives is on for the foreseeable future.”
Mia Ives-Rublee. Photo by David Moriya of Rogue Photo.
In June, Anita Cameron and 82 other activists staged a “die-in” outside of Senator Mitch McConnell’s office. They were protesting the newest draft of the GOP's Senate health care bill, which would make severe cuts to Medicaid. For Cameron and her co-protesters, most of whom had disabilities, the fight was deeply personal: The federal program insures 30 percent of adults with disabilities.
Seeking to call attention to the legislation's life-threatening consequences, Cameron and other activists with disabilities removed themselves from their wheelchairs and laid on the floor outside of Senator McConnell’s office. Astounding footage taken that day and posted to social media shows what happened next: Protesters, including Cameron, were ripped from their wheelchairs and physically dragged from the room. In all, 43 people were arrested and charged with crowding and obstruction, among other things.
When it came to protesting Congress’s ongoing attempts to repeal the Affordable Care Act, also known as Obamacare, disabled women were at the forefront of the fight, often putting their bodies on the line. Life-long disability right activists and first-time protestors alike have spent the past year mobilizing in response to the growing threat of losing affordable healthcare, which would have been financially devastating and life-threatening for many with disabilities. The GOP's proposed health care bill would have instated a cap on federal funding for state Medicaid programs, meaning that states would have to greatly reduce their provided services, very likely leaving many people with disabilities in enormous debt and without the means to live independently.
Cameron, a queer black woman who uses a motorized scooter, is one of those aforementioned lifelong activists. She joined ADAPT, a national grassroots group of disability rights activists, in 1986 and has been arrested 132 times for participating in direct actions. This year alone, Cameron participated in approximately 12 ADAPT protests and was arrested on nine occasions, she told Broadly. Although this year was particularly grueling, she said it's all been worth it: “For me, it’s all about being out there for the folks who can’t, the folks who won’t, and the folks who don’t know.”
Stephanie Woodward, who has a mobility disability, was also arrested during the June "die-in." During Woodward's arrest, fellow activist Colleen Flanagan snapped a photograph of her hands zip-tied behind her wheelchair, which went viral online due to the way it seemed to visualize the cruelty of the proposed bill. Woodward is also an ADAPT organizer, as well as the director of advocacy at the Center for Disability Rights. “Prior to 2017, I had, I think, eight arrests on my record, and I believe I’m up to 17 arrests now,” Woodward said. During the die-in, she added, 28 out of the 43 who were arrested were women.
Before this year, Flanagan, who also uses a wheelchair and identifies as a lifelong disability rights activist, had never been arrested. But in the face of recent threats to health care, she felt she had no choice. This past year, she was arrested six times while protesting the repeal of Obamacare and cuts to Medicaid. Flanagan’s most recent arrest was in September, when she and other protestors temporarily shut down a Senate hearing about repealing Obamacare, chanting, “No cuts to Medicaid! Save our liberty!”
“I am forever grateful to the ADAPT activists who put their body on the line to make my life better,” Flanagan said. “It was an honor to do the same for future generations of people with disabilities this year, as well as remind the world of the fact that when disability rights are under attack, you can count on ADAPT to fight back.”
For Carrie Ann Lucas, an attorney in Colorado who has a mobility disability and is the mother of four children who also have disabilities, repealing Obamacare or making cuts to Medicaid could have severe financial impact on her family, making it unaffordable for them to live in their own home. “The biggest issue for me is healthcare and continuing access to Medicaid—in particular, home- and community-based services,” Lucas explained, “so I can continue to live my life, take care of my family, [and] serve my community, work.”
It costs Lucas $187,000 a year to pay for personal care assistants, and that doesn't include other necessities like her power wheelchair or ventilator, she said. Medicaid, which is used by 10 million children and adults with disabilities, is the only health insurance that funds home- and community-based services. Without Medicaid, Lucas—and so many others—would have to move into a nursing home.
Lucas was one of 10 activists who, in June, performed a three-day sit-in inside Senator Cory Gardner’s office, aimed at persuading him to vote "no" on the Senate healthcare bill. It ended with them live-streaming their own arrests. “I was willing to risk my law license and be arrested this summer, because a law license does me no good if I'm living in an institution,” said Lucas.
The protests this year weren't just historic for their ambitious scope and persistence, they were also indicative of a new era in disability rights activism—one that centers the experiences of multiply marginalized groups. “For far too long, disability rights have been a white man’s game,” said Woodward. “And it’s time to take it forward and get a lot more people involved, including a lot of women’s voices and people of color and other marginalized communities [who] need to be a part of not only participating, but really planning the strategy of the disability rights movement.”
Cameron agrees: “In the disability rights movement I think that black folks, particularly black women, are not really represented as we should be. Although we’re around, and we’re involved, and we carry the heavy load, too.”All the women Broadly spoke to were quick to point out that they’re also committed to fighting against a wide range of issues not related to health care, such as police brutality against people of color, income inequality, and threats to reproductive rights and immigrant rights. And health care-related issues are not nearly all the problems that their demographic faces. Disabled women are paid just 73 cents on the dollar compared to non-disabled men. In 35 states, mothers are at risk of legally losing custody of their children simply because they are disabled. Moreover, women with disabilities face astonishingly high rates
of sexual assault.
For Kat Perez, who is the co-founder of the National Coalition for Latinx with Disabilities (NCLD) and has a mental disability, immigrant rights and disability rights are inseparable. Perez is Mexican and said that being members of both the disability and Latinx communities has been difficult at times because of the disconnect between the groups. To address the “fracture in identities,” two years ago, she and others formed the NCLD. In light of the growing xenophobia in this country and the administration’s mounting assaults on immigrants, the organization has been especially busy this year.
Perez worries that the increasing anti-immigrant policies will have detrimental consequences for immigrants with disabilities. She points to Rosa Marie Hernandez —a 10-year-old physically disabled girl who was taken into custody by federal agents following surgery—as one example of a growing problem. Perez said she is already beginning to see immigrants with disabilities afraid to access services out of fear they will be deported. “When we talk about immigration policies, [we have to ask,] 'How are we being exclusive or not thinking about disabled folks?'” she told Broadly.
Although disability touches every issue, all of the women interviewed for this piece expressed feeling excluded from larger resistance movements. In fact, it was concerns about inaccessibility that led activist Mia Ives-Rublee, who uses a wheelchair, to form the Women’s March Disability Caucus in preparation for the National Women’s March in late January. “I didn’t really intend to work as a national organizer,” Ives-Rublee told Broadly. “But I was starting to see a pattern on all the Women’s March social media pages.” Ives-Rublee noticed that a lot of people were posting questions about accessibility, and few were receiving answers. “From experiences in the past, I knew that accessibility would likely not get much attention,” she said.
Ives-Rublee formed the caucus with others in the disability community, reached out to the organizers of the Women’s March, and worked to ensure that the march included several accessibility features, such as accessible seating, sign language interpreters, and sighted guides for blind people. Ives-Rublee, along with other activists, also successfully pushed to get disability rights included in the Women’s March platform. Ultimately, the march became one the largest gatherings of people with disabilities ever.
“I think they underestimate the power and how strong of a community we are, how big of a community we are, [and] how organized we are.”
According to the activists interviewed, the key to guaranteeing accessibility is incorporating it into the foundation of the planning, rather than treating it as something extra. Also, organizers should assign a paid person to oversee accommodations and accessibility. According to Ives-Rublee, “If you add accessibility on the backend, that accessibility will never be truly integrated into the whole of the event. It will be much more expensive and time consuming if you try to add ramps, interpreters, etc., at the end rather than looking for accessible venues in the beginning.”
Perez feels that progressive movements often misjudge the influence and capability of disability rights activists. “I think they underestimate the power and how strong of a community we are, how big of a community we are, [and] how organized we are,” she said. “Particularly with social media, we are super organized in that way. I think that was really apparent with the health care stuff.”
Lucas echoed that point: “We get shit done. And we’re serious about it.”
Of course, activism is far more than just attending protests and marches. “Every single day in 2017 disability rights activists were calling, tweeting, emailing, and visiting members of Congress at home and in Washington to demand healthcare remain a right for the many and not only the privileged few,” said Flanagan.
In addition to protests and other actions, some of these women have become more formally engaged in politics. Lucas is running for Town Board in her hometown of Windsor, Colorado. And this year, Flanagan formed Disability Action for America, a political action committee dedicated to electing leaders who value disability rights, and provide resources for people with disabilities running for office. “The disability vote must hold candidates and incumbents accountable through elections to pressure politicians to use their power to fight for disability rights,” said Flanagan.
Although 2017 was a tumultuous year, it appears that most of these women are not stopping any time soon. The GOP has, so far, been unsuccessful at repealing Obamacare. However, their tax plan is equally dangerous, and is expected to increase tax burdens for people with disabilities as well as lead to significant cuts to Medicaid. As Cameron put it: “The fight for our lives is on for the foreseeable future.”