Women disability activists front and center in resistance

Call it the summer of discontent, the season that had the disability community on edge and disability rights activists positioned to strike back at lawmakers who were introducing adverse policies that would limit our quality of life and peace of mind.

From ADAPT (“a national grassroots disability rights organization fighting against institutional bias”) protest sit-ins and speak-outs to petition drives and penning potent think-pieces, activists across the nation have been pushing back again and again against the administration’s and more specifically the Republican-led Congress’s “cost-cutting” measures to replace the Affordable Care Act. And even though it looks like “repeal and replace” is dead, at least for now, we still hold our collective breath, waiting for the next round of “reasons” to limit health care as we know it.

As we commemorate the 27th anniversary of the Americans with Disabilities Act’s passing and the 52nd anniversary of Medicaid protections, I can’t help but feel a deep sigh and wonder when we will be able to cease the fight. When we as disabled persons with intersecting identities will feel welcomed and accommodated not only on paper. When universal access will be standard practice across the board. When more of our concerns are supported and signal-boosted without a second thought. When systems that leave many of us sidelined will be dismantled and become irrelevant. When people are respected no matter their ability.

When I reflect on the disability community and the communities convening under that umbrella, I consider the intersection of race and disability. People with disabilities compose roughly 20 percent of the population, and Black people are about 13 percent of the population. This nexus constitutes the most vulnerable point for the folks negatively impacted by health care policy changes and high treatment disparities.

As a Black disabled woman, those stats and state of concern are part of my story. I am a person in need of care, a caregiver for an elderly parent, and a community builder as a disability rights advocate. My health care coverage includes Medicare as primary insurer plus MassHealth (Massachusetts equivalent), as my socio-economic status sits right at what’s considered poverty level. I require the use of DME (durable medical equipment) in the form of canes, occasionally a wheelchair, and nightly mechanical ventilation—otherwise I could become hypoxic and risk respiratory failure due to weakened diaphragm muscles from a congenital form of muscular dystrophy.

The ventilator monthly rental rate runs at about $1,200, and if payments were impeded or discontinued because of a policy change, the radius of negative impact would extend beyond self to family and community. It would affect my self-care and family health and household management. My advocacy work would be similarly affected, with less energy, time, and attention devoted to things I am passionate about, because interruption of this flow would leave me flailing in survival mode only. And that thought is terrifying.

In my experience, many women, especially women of color, exist in this continuum of self-care, family responsibilities—including elderly parent care—and local leadership. We don’t have the choice not to do so due to lack of assistance, be it financial or familial. We fill the void because we have to. It’s unavoidable and often unnoticed. We fly under the radar, receiving little fanfare, and our self-care becomes a secondary concern. We juggle responsibilities, teeter to find balance, and wonder how best to respond to these latest threats when we might not have the financial, physical, or emotional wherewithal.

As I sit cross-legged atop my comfy bed at home in Boston, I think of the organizing efforts my sisters are engaged in—persistent and unsung leaders of the resistance to efforts to remove or destroy our support systems. Sisters like Anita Cameron, long-time ADAPTer and disability rights activist whose recent sit-in in Columbus, Ohio spotlighting the danger of proposed Medicare/Medicaid cuts garnered her 131st arrest. Anita is also a writer and noted blogger who crisscrosses the country speaking about a range of disability-related topics, her experience spanning over 30 years.

Another who comes to mind is Ola Ojewumi, disability rights advocate, writer, and executive director for Project Ascend, “an education nonprofit providing college scholarships to low-income students.” Ola has been making the rounds speaking with politicians and sharing why and how adverse health care would impact her and many others in the disability community. She spoke with political journalists in March about the disastrous effects of the repeal of the Affordable Care Act. Ola gives compelling, well-thought-out testimony that is beyond pity; her gusto and quiet confidence have striking reverberation.

Here in Boston, fellow Emerson College alum and activist Rhoda Gibson, co-founder of the MassADAPT chapter, shares why her presence and participation was important in recent protest of proposed health care cuts. Rhoda passionately expresses a singular quality-of-life request— “the right to live in freedom.”

Other women leading mobilizing efforts are Alice Wong, researcher, disability rights advocate, founder of Disability Visibility Project, and a #CripTheVote co-partner who uses their platform to chronicle disability-related stories. DVP is “an online community dedicated to recording, amplifying, and sharing disability stories and culture.” Here short tweets on Medicaid stories are amassed. Medicaid policies and programs and accessible health care for people with disabilities are among Alice’s priorities.

The disability community has been mobilizing using online platforms as a tool of activism, especially among those who may face barriers to attending events in person. Structural access, financial, spoon level (amount of energy one is able to expend at any given time), and child care are just some concerns when incorporating different brands of activism. These are best determined by each individual, since there is no hierarchy in activism, as I’ve previously shared, and every action can have a radius of impact that can be far-reaching.

Many women, especially women of color with multiple marginalizations, bring to their activism their unique, comprehensive, lived experience. This might include a legacy of generational trauma and survival skills in adverse environments. It may also include heightened sensitivity and well-honed innovative, analytical, and adaptive skills. These are transferable skills that can help fortify leadership capability. Whether we’re running households or board meetings, leading petition drives, parenting mindfully, organizing marches/rallies, lending moral support, showing up sans apology in unwelcoming spaces, or whatever brand of activism we choose to employ, we bring the totality of our experience.

We need many voices sharing the range of experiences from intersecting identities that are not often given volume, and we need to amplify stories that increase the shifting in seats from discomfort—perhaps dislodging ignorance and complacency in the face of experiences that may not mirror your own.

Maybe—just maybe—more folks, including lawmakers, will make connections and be moved to do the right thing by voting for health care that benefits life by preserving current health care and Medicare/Medicaid protections. Not doing so threatens quality of life and life expectancy. And since we’re not there yet, we’ll keep rolling, sitting in, tapping away at keyboards, and mobilizing so that our experiences are normalized and less newsworthy. Maybe then our collective rights as citizens will be recognized and respected without a second thought. Disabled lives are an everyday occurrence. Not recognizing this fact is not only disrespectful but dangerous. We’re tired of fighting, but we have little choice not to—otherwise it spells our demise.