Disabled people are still vulnerable, even as COVID-19 normalizes their ‘special’ needs

Disabled people are still vulnerable, even as COVID-19 normalizes their ‘special’ needs

Video conferencing. Work from home. Single-use cups and utensils. Plastic straws. Suddenly all these options that disabled people have requested for years are not only acceptable, they are valuable. When the coronavirus pandemic panic first landed upon us all, non-disabled people seized on accommodations to make “regular” lives possible—accommodations that disabled people have long considered necessary for their own “regular” lives. Despite this normalization of what was previously deemed special treatment, the American response to the pandemic simultaneously validates actions that make life more accessible, and increases divisions that separate the valued members of society from the expendable ones.

Perhaps it’s appropriate that public notices of the COVID-19 crisis began as an ableist cruelty. Health officials assured the nation that only the elderly and those with chronic health conditions would be seriously affected; most Americans (i.e., the normal people) would have only mild symptoms and be fine.

A friendly reminder: people who will be high-risk patients if we get coronavirus can hear you when you reassure everyone we’re the only ones who might die.

� Alexandra Brodsky (@azbrodsky) February 29, 2020

Soon after the announcement of those assurances, the likelihood of high-risk people surviving was further limited by the people more likely to be fine. Shopping frenzies cleared stores of essential supplies needed everyday by many disabled people, like thermometers, hand wipes, masks, and IV infusion supplies. Accustomed to their needs being overlooked, disabled people moved swiftly to find solutions.

Coronavirus: How These Disabled Activists Are Taking Matters Into Their Own (Sanitized) Hands https://t.co/a2K57ZB6Ze

� Aimi Hamraie they/them (@AimiHamraie) March 19, 2020

Restaurants had dismissed the disability community’s needs for plastic straws and other single-use items during The Great Straw Ban Argument of 2018. Then, as the pandemic broadened the risk of widespread infection to include everyone else in 2020, suddenly businesses discovered the “overlooked benefit” of plastic straws and single-use coffee cups: they’re clean.

In July 2018, Starbucks promised to eliminate plastic straws in their stores globally by 2020, but when 2020 rolled around, the world changed and plastic straws were viewed as a way to limit disease transmission. In an open letter on the company’s website, Starbucks executive vice president Rossann Williams wrote, “Every community’s needs are incredibly different. We want to make sure we play a constructive role by taking responsible actions, in partnership with the CDC and local public health authorities, so we can continue to do what’s right for our partners and customers.” 

This is exactly what we mean, about getting erased in national conversation.

� Daniel Gilbert �� (@AccessibleDan) March 14, 2020

Even non-global local restaurants took up the plastic straw, single-use cups, and utensils ban in 2018, but the pandemic has shifted priorities. The environmental problems associated with disposable plastic still exist, so perhaps the next big debate could center on how to address this without balancing the problem on the disabled community, and include them in the discussions.

Bf went to the taco shop yesterday. There�s so many extra precautions involving plastics to stop the spread of germs.. Disabled ppl told you so� But everyone wanted my community to choke or go w/o eating/drinking instead. ��

âÂ�Â�  (@HijaDe2Madre) March 15, 2020

Now that pandemic preparations have proceeded to daily death counts and “Shelter In Place” notices, the definition of “normal” has expanded. Because normal now includes being unable to leave home regularly, other accommodations like video conferences and online classes have materialized overnight. As Imani Barbarin points out, “Disability accommodations/accessibility are ‘special treatment’ right up till non-disabled people need them.”

Within a few days, workplaces approved telecommuting and millions of teachers shifted their classes online. These options had previously been denied to disabled people, due to preconceptions that remote workers would be unproductive and would not collaborate, or that online instruction was too difficult for teachers and unfair to students who attend in person. Lack of these online work/study options has long contributed to disabled people’s exclusion from workplaces and academia.

My school just went full online and I dropped out last month because I was told that I couldn�t go online part time for my disability or care assistant reasons. This is BULLSHIT.

� Jocelyn (@jocyofthedragon) March 11, 2020

Until recently, armchair activism was derided as slacktivism. However, when the general public lost the ability to congregate in person, voila! Slacktivism became cutting-edge digital activism. Bernie Sanders held an online primary night rally with celebrities, and Vulture gushed about it, “thankful” that guests participated from home.

Sure, coronavirus is working hard, but Bernie Sanders’s events team is working harder. Amid a hold on campaign rallies to reduce the coronavirus’s spread, Sanders will still pull out more celebrity endorsements and musical performances on a March 16 digital rally. Neil Young, who has already endorsed the senator, will appear alongside his wife, actress Daryl Hannah. And we’re thankful they’re staying inside!

Now disabled people finally have some of the accommodations they’ve long requested, but the only route to actualization was through a tragic pandemic. Society, however, is still ableist, although how that ableism manifests has changed.

So, I can’t get groceries on my own because I’m physically disabled but delivery services are so in demand right now I can’t get a delivery date for days and it’s late evening so most of the food will likely be gone

� Kim Sauder (@crippledscholar) March 16, 2020

Public transportation is also becoming limited in some locales; in all parts of the world, riding a bus or other public vehicle now carries significant health risks. The Centers for Disease Control further advises people to minimize risk by using a bus’ rear door or choosing a less popular route, but notes that those  “at higher risk” should stay home. Such options exist for “normal” people, but are impossible for some disabled riders of public transport. They may need a wheelchair lift at a bus’ main door; they may not be able to change routes due to inaccessible obstacles, like subway stairs.

Uber and Lyft offer alternatives for those who aren’t served by public transport, but a new economic barrier was created when the least expensive option—shared rides—was suspended. This change disproportionately affects disabled people, who live in poverty at more than twice the rate of non-disabled people. Drivers have been nervous about picking up infected passengers for over a month. And all passengers are concerned about their drivers’ health, as gig workers, who are ineligible for sick leave, are incentivized to keep working as long as possible. 

Recognizing that keeping people safe requires collective effort to minimize disease spread, San Francisco-area counties, Seattle, and other locales have issued “Shelter In Place” advisories. 

Yesterday, @smchealth Officer issued an order directing residents to stay home, except for essential activities. There are a lot of questions about what businesses and services are now open. Find more info on the shelter in place order here: https://t.co/S9XgyqLtfg pic.twitter.com/HN4yFBwP5Y

� San Mateo County Health (@SMCHealth) March 17, 2020

Limiting public gatherings and staying away from bars and restaurants helps everyone, although some people deny that their personal risk affects more than themselves, and this delusion was, until Thursday, confirmed by elected officials, like Florida Gov. Ron DeSantis. Others view their discomfort with remaining home as a good reason to be out and about, ignoring “Shelter In Place” orders.

âÂ�Â�If I get corona, I get corona. At the end of the day, I’m not gonna let it stop me from partyingâÂ�Â�: Spring breakers are still flocking to Miami, despite coronavirus warnings. https://t.co/KoYKI8zNDH pic.twitter.com/rfPfea1LrC

� CBS News (@CBSNews) March 18, 2020

Despite most official statements insisting that public movement restriction saves lives, many people view staying home as a burden. The media tries to distract new, temporary shut-ins by providing helpful advice like “How to stay healthy and entertained at home during the COVID-19 pandemic,” while people gripe on social media.

officially going crazy #CoronavirusOutbreak #QuarantineLife pic.twitter.com/Z4q6ZuQAfQ

� Elvin (@ElroyCabron) March 18, 2020

Yet isolation is normal for many disabled people, forced to spend large amounts of time home alone due to society’s obstacles. No one ever wrote front page stories giving them sympathetic advice on how to cope.

So many people answering this saying between 3 & 4, me included. But I need you to realize between 3 & 4 for you is my 1. What you’re experiencing right now is my daily life. It’s the same for most disabled & chronically ill people. Please remember that when you go back to your 1 https://t.co/9XnfFmQeD7

� Bif In Self Quarantine (@BifInMediasRes) March 19, 2020

The disabled community, of course, is doing what it’s always done: helping each other. Jamie Hale, a U.K.-based poet, artist, writer, and disability activist, shared 15 helpful things that made a six-month hospital stay livable.

As a #disabled person I’ve got lots of experience surviving indoors – and lots of tips to share as well https://t.co/8wZwCtcaTl #covid-19 #coronavirus #quarantine #isolation #disability

� Jamie Hale (@jamierhale) March 17, 2020

High-risk, non-elderly people are also trying to raise awareness about the dangers posed when people recklessly roam around, defying the need to isolate and limit disease transmission. The hashtag #HighRiskCovid19 launched a public display of vulnerability intended to remind people why they should stay home.

This 20-year-old woman illustrates that not just elderly people are high-risk. She looks healthy enough to be partying on the beach with her peers, but has an invisible disability managed by regular IV infusions of drugs that compromise her immune system. 

hi, I�m 20 and I have SLE/lupus nephritis. I take immunosuppressants to keep my body from attacking itself. I�m amongst those who have to �self-isolate� to stay healthy for a majority of this year. so pls keep me/others in mind when u think u �can�t stay in� �#HighRiskCovid19 pic.twitter.com/L6sUts5K9k

� B R I T T A N I A �� (@Brittaniaaa_) March 16, 2020

Jade Simon is a paleontologist and doctoral candidate who’s overcome academic barriers faced by disabled people. COVID-19 exposure, however, might be a barrier she can’t overcome. Jade used the hashtag #SeeUsSchumer to tell the Senate Minority Leader that his proposed COVID-19 relief bill helps the elderly, but ignores younger people with chronic illness.

We are not invisible. Chronic illness, disability, & vulnerability to #COVID19 are not restricted to the elderly. #SeeUsSchumer. I�m 34, look healthy, but have 3 rare diseases & am very #HighRiskCovid19. Help *all* affected, not just some pic.twitter.com/1JEFhW3Cca

� Jade Simon (@oisforoviraptor) March 17, 2020

Although disease experts view children as generally less threatened, some are high-risk. One mother showcased her immunocompromised baby to highlight how careless personal decisions threaten everyone in the community. One Twitter user sneered in response, “But if he’s isolated, he’s not affected by what other people (he doesn’t interact with) do. Social distancing ad infinitum is far worse for society.” Mama Maddy replied, “He will be impacted if my husband or I get it because we had to go to the grocery store to buy food or diapers and it’s spread exponentially but thanks for playing.”

My son was born prematurely, is immunocompromised, and on oxygen. We hope he�ll be off of it soon, but to do so he needs to stay healthy. He is already quarantined because of flu season. He is six months old. Please think of him before you break social distancing #HighRiskCovid19 pic.twitter.com/Rk2fC94tFN

� Maddy (@cymaticbirds) March 15, 2020

Disabled people are making themselves vulnerable by exposing their faces and health issues to remind the public they, too, deserve protection—but they should not have to.

I appreciate tags like #HighRiskCovid19, but let�s spare a thought to the fact that disabled and chronically ill folks are having to engage in GoFundMe pageantry to stay alive yet fucking again just to show people our lives are worth saving. It�s seriously fucked up.

� Crutches&Spice �� : Rude For A Disabled Person (@Imani_Barbarin) March 15, 2020

While this pandemic is a rare experience, disabled activists remember what has already happened in past disasters. Many were entirely abandoned during the PG&E blackouts of 2019. Survivors remember who died and who was left to roll themselves to safety through the flames of the Camp Fire. Disasters may be random, but failure to include disabled people in disaster mitigation planning is systematic. 

Climate chaos and natural disasters destabilize the natural and human-built environments. Many elders’ and disabled folks’ lives balance on a narrow set of criteria. It doesn’t take the world’s most expensive disaster to overturn our security and block us from re-establishing what was lost. Just as society is designed for non-disabled people and accessibility features are an afterthought (often inadequate), official planning and responses for climate change crises center on non-disabled people.

In Hurricane Katrina, although 15% of the city’s population was 60 or older, they accounted for 70% of the deaths. Not all the deaths were due to direct consequences of the hurricane, though. During post-storm triage at one hospital, as evacuations were underway, at least 18 people were allegedly euthanized with a lethal mix of morphine and benzodiazepines.

Girl, some folks are going to have to learn the hard way. Are they not old enough to remember Katrina when people were euthanized because hospitals were overwhelmed? Our country ain’t ready for disaster. https://t.co/YAvurxicEz

� Angela Nissel (@AngelaNissel) March 10, 2020

Disabled people already know their lives are less important—because society tells them every single day. The threat of not being deemed eligible for a chance at surviving is especially acute in this pandemic. Shortages of critical medical equipment like ventilators impose the need to triage patients and decide who receives scarce medical resources. This weekend, The Washington Post reported that 1,000 people needed ventilators in Wuhan, China, but only 600 were available; further, “in northern Italy, doctors took the painful step last week of issuing guidelines for rationing ventilators and other essential medical equipment, prioritizing treatment for the young and others with the best chance of survival.”

Activist Alice Wong, whose survival depends on a BiPAP mask that forces air into her lungs, has spotlighted these policies for years. She refuses “to allow the medical industrial complex to reduce me to my comorbidities, risk factors, and inability to perform X number of activities of daily living.”

This time feels different for me with the very real threats of health care rationing and shortage of ventilators for critically ill patients in the United States. 3x Ex: https://t.co/GDsd2X7rIP

� Alice Wong (@SFdirewolf) March 18, 2020

With projections that 40% to 60% of the 327 million people in the U.S. could become infected, similar choices may be made in the U.S. Triage guidelines in the Washington state outbreak confuse age with ability, and allocate scarce resources to “young (and) healthy” over “older, chronically debilitated” patients, which ignores young, chronically ill people.

From the University of Washington Medical Center resource allocation guidelines in response to COVID-19: https://t.co/TYRTyTXppc#CripTheVote pic.twitter.com/xED25IRiu1

âÂ�Â� Ari Ne’eman (@aneeman) March 17, 2020

Activist Ari Ne’eman, a Harvard Ph.D. student in health policy who advises the ACLU on disability issues, questions whether hospital triage criteria align with values held by society. Is it generally acceptable to rank non-disabled people above disabled, regardless of age? Does the life of a 20-year-old woman who needs immune-suppressing drugs to manage her chronic health condition rank lower to society, and to medical triage guides, than that of an otherwise healthy for her age 80-year-old woman? 

While UW is likely correct that prioritizing the young over the old has “general support” in society-at-large, that is not necessarily the case for prioritizing the non-disabled over the non-elderly disabled. #CripTheVote

âÂ�Â� Ari Ne’eman (@aneeman) March 17, 2020

Ne’eman exposes other uncomfortable conditions, noting that Tennessee’s triage criteria allow doctors to withhold critical care from people with spinal muscular atrophy who require ventilators or help with activities of daily living, like dressing and cooking.

It gets worse, Ne’eman notes, because New York state guidelines actually allow hospitals to take ventilators away from disabled people who come into the hospital from a long-term support setting where they normally have access to ventilators. Once they arrive at the hospital, they are treated like every other patient, and need to meet criteria to be eligible for a ventilator.

They said that they ~considered the alternative~ of solving this problem by applying the triage guidelines to all people using ventilators, but out of a deep sense of moral scruples, decided only to recommend taking ventilators away if you go to the hospital. #CripTheVote https://t.co/PwlCjyuAKO

� Rabbi Ruti Regan ������ (@RutiRegan) March 17, 2020

The COVID-19 pandemic is exposing failings in our health and safety policies that dismiss disabled people as less important. Emergency departments have always assessed how best to allocate medical resources, but now algorithms are involved. Engineers haven’t yet designed an algorithm for the ethics of autonomous vehicle safe operation, nor for a non-racist soap dispenser that operates in response to all skin tones. So are algorithms really ready to decide who receives life-saving treatment, and who is denied?

Is This Soap Dispenser Racist? Viral Video Of ‘#Racist‘ Soap Dispenser Sparks Outrage On The Internet pic.twitter.com/PY65LEkojc

� AnonymousArmy (@AnonymousNewsHQ) August 24, 2017

Wong argues that healthcare triage algorithms are “hella racist, classist, and ableist.”

“…the vendor had failed to properly account for diabetes and cerebral palsy in the algorithm. Without the lawsuit, those who lost care would have had little evidence that they could use in the appeals process to challenge the algorithmâÂ�Â�s decisions.”

� Alice Wong (@SFdirewolf) March 17, 2020

As politicians rush to develop policies to mitigate consequences of the pandemic, disability rights activist Rebecca Cokley, director of the Disability Justice Initiative at the Center for American Progress and self-titled “Chief of the Little People Police,” reminds us that the needs and rights of disabled people are best known by the people involved. Remember the straw ban?

So proud of our ongoing working relationship with .@AyannaPressley and her team. The work matters. And we must be at the table. https://t.co/HnFhLLNU2v

� Rebecca Cokley (@RebeccaCokley) March 17, 2020

Perhaps one lesson from the pandemic will be that our survival depends on each other and will prompt permanent changes that respect the different varieties of humans. As Wong observes: “Disabled people know what it means to be vulnerable and interdependent. We are modern-day oracles. It’s time people listened to us.” Options that the disabled community has long requested are being established across the U.S.—and people who have advocated for these options are grateful that everyone is now benefiting from these changes. Yet they also don’t want these accommodations to vanish when the crisis is over. 

Now that people across the nation and world are experiencing a deadly event that reveals our interdependencies and triggers the creation of accommodations like online classes and sanitary plastic straws, will society recognize that many disabilities are only a problem due to artificial barriers and conventions of “how things have always been done?” Can we redefine “normal” as a spectrum that includes disability, or will people snap back into the us/them dichotomy of normal/disabled? When COVID-19 is behind us, will disabled people whose “regular lives” need video conferencing, work from home, and single-use items retain access to these aids? For a society bent on euphemisms like “differently abled,” we don’t really see such differences as a variation, so much as a value. The pandemic, just like our algorithms, is revealing our flawed ethics.

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