When the George Floyd protests started spilling onto American streets, I could hear them outside my window. My apartment was close to a staging point for protests, and particularly in the headiest, early days of the uprising, my neighborhood became a locus for some of the fiercest battles between police and protesters – burning cop cars, countless tear-gassings and beatings, chanting, fireworks.
Long into the hot nights of late May and early June, I could hear the steady thrum of civic discourse at its harshest and most democratic, sirens and ragged voices rising up into the city swelter. The protesters flowed, legion, past my window, raucous, brave, masked, carrying signs that read like prayers. But as much as I wanted to join them, I couldn’t get out the door.
For 10 years, I’ve had panic disorder, a mental illness in which I have panic attacks – a vicious raking over the strings of the soul, an adrenaline explosion that leaves me catatonic, gasping – anywhere from a few times a week to multiple times a day. Over the past four months, since COVID-19 upended life in New York City and everywhere else, it’s been whining through my veins at an impossibly high pitch; every day and hour feels fraught, every step I take a chance for the choking hand of panic to close around my neck. I have been housebound completely for weeks at a time, despite medication and therapy.
In crowds (a panic trigger for me even before the pandemic), the familiar symptoms come on like bad inner lightning: Vertigo and sweating, a racing heart in a heavy and painful chest, trembling knees, hyperventilation, five or 12 alarms ringing in my head that I am in danger, danger, danger, and that I need to throw up, fall down, scream for help, run away. I have long known that these traits and symptoms render me uniquely useless as a street-protest operative.
Most of the support I have been able to provide to the movement takes place online: Sharing fundraisers, raising awareness about specific actions, boosting the street-level accounts of photojournalists and reporters on the scene. I have shared outraged screeds against the municipal and federal policies that led us to this moment, and written some of my own.
TW: Black disabled death
I’m seeing this make the rounds on FB:
Michael Hickson was denied care for #COVID19 because he didn’t have “quality of life” to warrant the effort by physicians.
This is the moment disabled ppl talked about. We’re here now. https://t.co/kzq6KDMicz
— Crutches&Spice ♿️ : Rude For A Disabled Person (@Imani_Barbarin) June 28, 2020
In this, I am not alone. Online activism has, since the advent of social media, been a robust and crucial accompaniment to physical action. Protests themselves, when seen and amplified broadly, have greater effect; popular consciousness moves on images, and the clouds of teargas, the die-ins, the feds with batons amplified through Twitter and Facebook and Instagram provide a multiplying effect, a means for those unable to be present at the front lines to support the cause. For myself, frozen in place, mental illness rendering me unable to weather even the most uneventful protest, the ability to join my voice to others’ and to amplify the message of urgently needed change has been a tonic against powerlessness.
For disabled activists, however, online activism can be more than just a supplemental additive to physical actions. And during a time of widespread protest against racial injustice, and a devastating pandemic that disproportionately affects disabled people, online activism has been a means to be seen and heard across social distance and rampant inequality. During the steamy weeks of June, as the upheaval over racial injustice and the pandemic raged alongside one another, one case in particular drew the focus of disability rights advocates on a national level.
When Melvin Hickson, a Black quadriplegic man with a brain injury, died in Austin, Texas, of COVID-19 in June, it set off a shock wave among disability advocates across the United States.
In a widely shared audio recording captured by Hickson’s wife, Melissa, a doctor could be heard stating that Hickson, who had suffered from a brain injury following cardiac arrest years earlier, was ineligible for continued, invasive treatment, and would be moved to hospice care. Though Melissa advocated passionately for continuing treatment, including the administration of the experimental drug remdesivir, the unidentified doctor asserted that Melvin “did not have much” of a “quality of life” to preserve – other patients who had received intubation were “walking and talking people” — and declined further treatment in the tense exchange. Melvin Hickson died days after being moved to hospice care.
“On social media, social distance dissolves; those who cannot gather in person during a pandemic can take the opportunity to make themselves visible, heard and seen, by one another and a broader public.”
While the hospital disputed Melissa Hickson’s characterization of events, claiming that Michael Hickson’s infection was irrecoverably serious and featured sepsis and organ failure, the incident was a clarion warning – and a rallying cry – for disabled activists around the country.
“This is the moment disabled people talked about. We’re here now,” wrote disabled activist Imani Barbarin. “There are many more stories like this to come.”
During a pandemic that has hit long-term care facilities with devastating force – deaths tied to such facilities comprise more than 40% of total US coronavirus deaths – disability advocates have spoken out with renewed urgency about the need for equitable health care and safe housing for disabled Americans.
“Disabled people have been instrumental in sharing about the disparities of the pandemic, the virus,” Vilissa Thompson, a Black disabled activist and founder of Ramp Your Voice, a blog that looks at disability from an intersectional perspective, told Digital Trends. “That’s what the community does, ensuring that the disability narrative doesn’t get lost, particularly when we are impacted significantly.”
On social media, social distance dissolves; those who cannot gather in person during a pandemic can take the opportunity to make themselves visible, heard and seen, by one another and a broader public. Hashtags like #HighRiskCovid19 and #NoBodyIsDisposable have enabled those with severe conditions that make them particularly vulnerable to the disease to speak out against those with a more laissez-faire, even eugenic attitude toward the pandemic, particularly during a spate of “Reopen” protests that pushed rhetoric implying that some lives were acceptable to sacrifice.
The rapid transformations that have accompanied the pandemic have also spurred some disabled activists to speak out in frustration about the sudden ability of offices, schools, and cultural institutions to accommodate telework and remote appearances – something long demanded by disabled activists as a vital step toward accessibility.
“COVID-19 gives people with disabilities more opportunity to work,” wrote Christina Mills, the disabled director of the California Foundation for Independent Living Centers. “Remote work is often the most accessible – the workplace has the accommodations we need already in place.”
Thompson told Digital Trends that the pandemic had provided an opportunity for disabled workers and students to vent long-standing frustration at the ways in which employers and schools had previously refused to provide remote, accessible options.
“I wouldn’t be where I am without social media.” – Keah Brown
“At the start of the pandemic, the work from home situation, people were talking about how when they had the need to work remotely, they were denied,” she said. “They were talking about being denied that option before, even though working from home is the way that most of us can do work. That’s what it is for many of us, and the barriers for many of us. We are seeing the shift the pandemic has created toward means that have always benefited disabled people but have not always been valued in that way.”
Disability activism has existed online for years and decades – it serves as both a supplement to on-the-ground actions and a means for connection, to each other as well as to politicians and the general public.
Social media has also enabled disabled individuals to become more visible in a society that has often excluded them from representation in popular culture, and rendered their internal lives and social needs stigmatized and hidden.
“I wouldn’t be where I am without social media,” the Black disabled writer and advocate Keah Brown, author of the memoir The Pretty One, told Digital Trends. Brown created the hashtag #DisabledAndCute in 2017 as a means for disabled people of all ages, races, and genders across the world to show off in selfies and pictures that allowed them to represent themselves as more than objects of pity or maudlin “inspiration porn.”
One of the most striking projects making the needs of disabled Americans central to political conversations was launched during the 2015 primaries, and it reclaims a slur in order to ensure disabled activists can shape conversations about policy that affects them. The project is called #CripTheVote, and was founded by Alice Wong, Andrew Pulrang and Gregg Beratan. Existing both as a website and as a hashtag that sparks frequent chats between politicians and members of the community, #CripTheVote has been a central hub of disability advocacy online for the past half-decade. A nonpartisan movement, #CripTheVote aims to facilitate “online conversations encouraging individual and collective action in the face of inequality, ableism, and oppression in all forms.”
#CripTheVote started during the 2016 primaries as a means to spur candidates on both sides of the aisle to engage with disability policies.
“We wanted candidates and moderators to bring up disabled people and disability issues, so we decided to use Twitter and a catchy hashtag to follow the debates in real time, and discuss our issues before, during, and after each one,” Pulrang, who uses a ventilator, told Digital Trends. “From there, it became a way to discuss disability policy and politics on a daily basis, and in scheduled chats on specific topics.”
During the 2020 Democratic primaries, then-candidates Elizabeth Warren and Pete Buttegieg both held chats with #CripTheVote, something Pulrang told me he felt was a moment of triumph. Matthew Cortland, a disabled grassroots disability rights advocate and lawyer, worked closely with the Warren campaign to shape her disability policy plan, elements of which have been preserved in presidential candidate Joe Biden’s platform. In particular, as disabled writer Sara Luterman reported in The Nation, Biden’s plan would remove current barriers that render disabled people unable to marry without losing access to Medicaid – which they often rely on to survive. Biden’s campaign website cites a commitment to “reform the SSI [Supplemental Security Insurance] program so that it doesn’t limit beneficiaries’ freedom to marry, save, or live where they choose.”
Pulrang stressed that while online activism is a vital part of disability advocacy, it is not the sole means by which disabled people make their voices heard. He described disability activism as a three-legged stool: “You have online disability activism, in-person “street” protests and events, and the more professionalized policy analysis and “lobbying” efforts that happen mainly in Washington, D.C., and state capitols,” he told Digital Trends. “All three are important, and when everything is working right, they work together.”
Beratan, another co-founder of #CripTheVote, told Digital Trends he has been arrested over 20 times advocating for disability rights. In particular, Beratan cited the deeply impactful protests led by disability rights group ADAPT in 2017, which sought to forestall devastating cuts to Medicaid in a proposed Republican health care plan. Dozens of disabled activists, many in wheelchairs, were arrested outside Senate Majority Leader Mitch McConnell’s office, carried bodily away by Capitol Police in a series of indelible images that became synonymous with the effort to preserve access to health care.
But, Pulrang said, he’s not sure that these in-person actions have had more impact than #CripTheVote – a hashtag that has enabled increased visibility and awareness of disability rights across barriers and borders. It’s a digital movement that initially began as a way for a few deeply engaged disabled individuals to keep up with the 2016 primary debates, and morphed into something much larger, fiercer, and global.
“When it started, we thought we would hold a few chats and live tweet the debates, but after we launched, the disability community took ownership of the hashtag, people began tweeting on it 24 hours a day, using it to reach out to candidates, start discussions, to rant about what was going on in the world and would affect our community,” Beratan said. “It was a beautiful thing to have this project so thoroughly embraced by our vibrant, knowledgeable, and amazing community.”
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