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It’s Hard Being Cut Off from Society? Welcome to My World

SXSW on Amazon, first-run VOD, even Zoom — it's the fulfillment of what many disabled people long wanted, but were told was impossible.

A still from Crip Camp by Nicole Newnham and Jim LeBrecht, an official selection of the U.S. Documentary Competition at the 2020 Sundance Film Festival. Courtesy of Sundance Institute | photo by Steve Honigsbaum.All photos are copyrighted and may be used by press only for the purpose of news or editorial coverage of Sundance Institute programs. Photos must be accompanied by a credit to the photographer and/or 'Courtesy of Sundance Institute.' Unauthorized use, alteration, reproduction or sale of logos and/or photos is strictly prohibited.

“Crip Camp”


It seems like a million years ago when I watched the Netflix documentary “Crip Camp,” which explores the rise of the Disabled Rights movement in the 1970s. A few weeks later, the world was in a full-blown pandemic that forced all of us to abandon everything we knew about interacting with the world. Public transportation, grocery shopping, going to the office, walking on the beach: It was suddenly risky, difficult, or impossible — for everyone.

As a disabled writer, there’s an irony in witnessing this reversal of fortune. It’s been odd to read countless tweets from able-bodied friends who discuss their struggles with self-isolation, job loss, and telecommuting. For the record: Many of these complaints, frustrations, and anxieties are the same ones that people with disabilities have known — and fought against — for decades, only to be told that what we wanted were entitlements or privileges.

And then the pandemic changed the way everyone interacts and effectively stopped daily routines. Seemingly overnight, workarounds no longer require special dispensation; the world is in an arms race to see who can compile the coolest uses for Zoom.

Able-bodied people on social media complain about self-quarantining, whether that’s coping with the isolation of having no friends or family close by, the lack of access of common household items, or even getting into the store without a line. Lawrence Carter-Long, disabled rights activist and Director of Communications for the Disability Rights Education and Defense Fund, told me he sees this as “a wake-up call for folks who aren’t yet disabled.” Those with disabilities are used to chronically adapting to a world not designed with us in mind; we can sympathize with able-bodied people who are feeling many of the same things we do, whether that’s the lack of agency to poverty fears.

“We’re all in this together” is the trope of the moment, but the truth is that, even now, the distinction between the abled and the disabled remains. For the disabled, there’s also a sense of “We told you!” — but it doesn’t stem from bitterness or righteousness. It’s an expression of frustration, and a validation of what the disabled community has said for decades.

From the “Dr. Phil Show” to news segments and countless thinkpieces in between, coping with isolation and the resulting depression is a hot new topic — meanwhile, studies have long shown an increase in depression among the disabled due to their isolation. “I try to remind people that your feeling is all too familiar when you’re not able to drive somewhere independently,” says Emily Ladau, editor-in-chief of disabled rights website Rooted in Rights. “This is a reality for a lot of people, but society doesn’t appreciate that reality.”

Even now, many people don’t want to hear it. Ladau recently published an article on the Huffington Post about the particular coronavirus fears experienced by many disabled people, including the question of who is worth saving in overcrowded hospitals that may be forced to triage. Many commenters rolled their eyes telling Ladau “to take a Xanax.” Alice Wong, director of the Disability Visibility Project and a disabled activist based in San Francisco, said she finds it especially disturbing to see such “casual ageism and ableism” with regards to which groups are the most “vulnerable.”

Wong said she has anxiety about what will happen if she or her caregivers, both over 65, get sick. “The prospect of dying alone in the ICU weighs heavily on my mind,” she said. “I’m going through various scenarios and talking with siblings and my doctor about what might happen if I become sick.” Wong has also prepared as best she can, stocking up on necessary medications and sheltering in place for the last three weeks.

Wong can’t help but “laugh with some bitterness” with companies, colleges, and individuals discovering telecommuting options like Zoom. NowThis recently did a video interview with Jocelyn Mondragon, a disability advocate who wanted to take college classes but was prohibited because her professors wouldn’t accommodate video screenings. Now, this is how the college conducts classes.

These stories also contain what Carter-Long calls a “curb-cut effect.” That is: Curb cuts were once perceived as a solution forced onto the infrastructure because of lawsuits from disabled people. Today, they are considered essential for families with strollers or people who just don’t want to trip. The benefits extend far beyond being for the disabled.

Media has its curb cuts, too. Studios are now releasing their films early, or even same day, on VOD, and inadvertently fulfilling the long-held dream of many disabled patrons who wanted to see movies at the same time as everyone else but were limited in their ability to go to the theaters. The same goes for festivals. The recent announcement that SXSW will be screen films via Amazon also holds a positive connotation as many disabled film fans who can’t navigate Austin’s streets are now able to connect with media as if they were attending. Disabled film festival Reelabilities transitioned their event to an online screening, “giv[ing] everyone a chance to experience media they’re so often shut away from just because they don’t live in an accessible society,” says Ladau.

The disabled activists I spoke with are very optimistic that the technological elements employed in this global health crisis are here to stay. Wong hopes it will compel us to value both disabled and elderly people, she said: “We’re going to be changed as a culture in profound, unknown ways.” Ladau hopes offices and educational environments will allow for telecommuting to act as “an extension of my everyday life,” she said.

More importantly, this moment can remind us that those with disabilities are at the forefront of adaptation. Because we understand how difficult the world can be, we’re forced to be more creative, more passionate, and more inventive. Said Wong, “We’re the oracles with wisdom on how to be creative, innovative, and accessible even though we still don’t get the visibility and credit we deserve.”

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