Shelter in place? Welcome to our world

In the Netflix documentary Crip Camp, we meet a group of teenagers hanging out together in a camp in the Catskills during the 1960s. Like most teens, they’re into pairing off to make out, party, and play sports. 

The difference? They’re all disabled. In a dramatic turn of events, the teens grow up and take on the U.S. government, staging protests that pave the way to the passage of the Americans With Disabilities Act (ADA).

One camper, Judy Heumann, went on to lead a 25-day sit-in in San Francisco demanding rights for the disabled in 1977. Of her camp experience, she told the New York Times, “[W]e could be ourselves and it absolutely helped us formulate our futures.” 

Heumann and her peers laid the groundwork for the next wave of activism. This includes ADAPT, which saved the Affordable Care Act in 2017 by staging a sit-in in the halls of Congress.

Now, as we craft a socialist response to the pandemic, it’s essential that we include the voices of disabled people and those with chronic illness. Not only is it the right thing to do, it will make us smarter and stronger as a movement. 

For those of us who are chronically ill and disabled, “sheltering in place” and “social isolation” describe our lives before the pandemic. We know what it’s like to be cut off from the world and stuck at home. Through this, we’ve developed ways to build coalitions and community. We share resources and help each other through the struggles we must face. We organize. 

We’re already casualties of our failed healthcare system. Our lives have been treated as separate and unequal by the government. We’ve been locked out of the job market thanks to prejudice and inaccessibility. Yet, we go on.

We fight for our rights even when we can’t physically show up to do so. For example, long before the coronavirus crisis, ME Action held “Millions Missing” virtual rallies to highlight the invisible population of people who are homebound due to chronic illness.

COVID-19 has thrown back the curtain on our healthcare system, which is really a patchwork of unstable parts, unaffordable for many. A morning scan of pandemic headlines brings an assault of numbers: infection rates, death tolls, shortages of protective equipment. We watch as COVID-19 slams prisons, nursing homes, group homes—anywhere people live in close quarters, tended by low-wage people now tagged as “heroes.” 

Whether we are in one of those populations or not, we can see the harsh light those numbers throw on our society’s foundational inequities: The disease hits harder in communities of color, made vulnerable by centuries of deprivation. It also disproportionately harms anyone who is sick, disabled, or elderly—especially if they’re institutionalized.

Disability justice isn’t separate from racial and economic justice. It’s a key component. At a mid-April panel on “Grounding Movements in Disability Justice,”Azza Altiraifi pointed out that ableism has capitalism at its heart: “A bodymind that isn’t ‘productive’ to capital is categorized as disposable.” In the 19th century, Talila Lewis elaborated, scientists created disease categories with which to make black bodies less able. They came up with pseudoscientific terms: drapetomania made blacks try to escape the plantation, and work stoppages were due to dysaesthesia aethiopica, which caused a black worker to act “like a person half asleep.” 

To this day, chronically ill people are subjected to seemingly arbitrary disease categories: neurological disorders, pain syndromes, somatoform disorders, functional disorders, the list goes on. All have the gloss of science but are often meaningless and can be infused with prejudice. Many more women than men are diagnosed with fibromyalgia, for example—especially black women. Because there’s no one test for it, anyone with pain can be branded with it. 

In the relentless placing of profits before people, we no longer have health care, but the healthcare “industry.” Care is organized around procedures (tests, surgeries), not the health of any one consumer or patient. That health may require ongoing care, but that’s often seen as prohibitively expensive. 

For example, one of us (Mugrabi) saw her neurologist celebrate her diagnosis of dystonia, which was “treatable.” She was happy at first, until she discovered that the illness was also incurable, which he hadn’t mentioned. The system rewarded the doctor for performing a procedure that turned out not to work, but didn’t reward him for taking time to consider the many symptoms that didn’t fit that diagnosis. It was years before she got a better treatment.

This has been the reality for decades for disabled and chronically ill people. We’re lucky to get a diagnosis at all. And even if we do, we don’t fit into the system, which is designed to squeeze profitable procedures out of its “products”—not help and support people with long term and complex health issues. This explains the seeming paradox of overtaxed ICUs and hospital closings and layoffs as hospitals go under because they have to treat the sick rather than focus on elective surgeries that yield big profits.

Now, we’re even more vulnerable, as many of us have underlying conditions that make us more susceptible to COVID-19. And far from protecting us, many states are trying to enact laws that put disabled people at the back of the line if it comes to healthcare rationing, such as deciding who gets a ventilator. Those who rely on ventilators to survive are in danger of having them taken away. This is based on abled people’s ideas about what constitutes quality of life, rather than on anything objective.

You’ve heard about states fighting for protective equipment and ventilators. But how many chronically ill and disabled people have lost their home care, which they need for tasks of daily life? This is thanks to a perfect storm—caregivers fearing infection, public transportation shutting down, and states being unwilling to step in and help keep these protections in place. Parents of chronically ill children have been pressured to sign DNRs (do-not-resuscitate orders) that might deny them access to a ventilator. 

Some DSAers are already in the fight. Central New Jersey DSA’s Disability Solidarity Working Group is chaired by Kristen Smith, former staffer at ADAPT, the flagship organization of disability direct action. Just as Central NJ is working closely with ADAPT, these battles are best fought in partnership with the disability/chronic illness community. 

Its activists have worked hard to develop cures and shed a light on even the rarest of illnesses. On Twitter, Smith responded to concerns about personal care aides: “Those who rely on PCAs for survival aren’t getting what we need. [Having to fight for someone to bathe you, for example—or administer your daily medications—benefits no one.] A rubric tool at the state level, and bureaucratic “one size fits all” red tape is leaving people at risk and vulnerable. Help the disability community get healthcare justice and their needed care coverage.” 

Such expertise will be even more crucial as we approach a post-COVID period, which could come with its own chronic-illness crisis. There is ample evidence that the virus attacks neurological systems and organs, and we know that post-viral chronic fatigue illnesses are likely. When the headlines have disappeared, will those affected again be treated as expendable?

Disabled activists remind us that we are all one illness or one accident away from disability. Those who survive to old age even without illness or accident will experience disability. Most of us are, at best, temporarily able.

COVID-19 has thrown the situation into sharp focus. This crisis challenges all of us to fight for a world where one’s life is not dependent on how useful one is, a place where we are all creating communities of the heart. The most vulnerable hold a mirror up, and show we have to do better than this.