‘Mass disabling event’

Businesses and even the government often see disability as a burden: a legal obligation and not a right. But when the COVID-19 pandemic hit, the world was forced to evolve — and fast. 


Zoom meetings became the norm, and working from home gained traction across the nation. Accommodations that disability activists have long advocated for felt more attainable than ever


“COVID kind of switched that mentality for a lot of businesses, and have also switched the operating model for a lot of businesses,” Jones says. “Prior to COVID, when we would look at accommodations like work at home or things like that for people with disabilities, oftentimes businesses pushed back and said, ‘No, that’s not possible.’”


Sami Schalk Headshot
Sami Schalk, a gender and women's studies professor at UW–Madison who studies disability justice, characterizes the pandemic as a "mass-disabling event." Schalk says many people with long COVID are currently grieving the bodies they thought they would have — especially young people. Photography by Paulius Musteikis.

As private entities implemented virtual accommodations en masse, the pandemic forced many Americans to reckon with disabilities on a more personal level. 


According to a survey conducted in June 2022, nearly 1 in 5 Americans who had COVID-19 experienced long COVID, defined as symptoms that have lasted three or more months since the individual first contracted the virus. This means 1 in 13 U.S. adults have experienced long COVID symptoms.


Sami Schalk, a UW–Madison professor of gender and women’s studies who studies disability justice, views the pandemic as a “mass disabling event” — a term experts and advocates have used to describe the pandemic’s ability to induce disability. 


Schalk says this idea expands beyond long COVID to include all of the pandemic’s impacts, including people who acquired psychological disabilities during lockdowns or those who developed physical disabilities without access to medical services because hospitals were overloaded with COVID-19 patients.


The more times people have COVID-19, the more at risk they are for developing long COVID — meaning the full disabling impact of the pandemic is yet to be realized.


“So (myself) and many people I think in the disability justice community understand this pandemic to be a mass disabling event that will forever alter the way that disability is experienced and understood in our culture,” she says. 


Schalk says a lot of people with long COVID, especially younger ones, are currently grieving the loss of the futures and bodies they thought they would have.

This is certainly the case for 45-year-old Georgia Linders of La Crosse, Wisconsin. She remembers the exact date her fever started: April 6, 2020, before widespread COVID-19 testing was available. 


“I started posting on Facebook, like I’ve had a fever for five days, I’ve had a fever for six days,” Linders says. “And now, I’ve had a fever for almost three years.”


Linders’ symptoms became so strong that she took several weeks off work. After she used up her paid time off and her sick days ran out, Linders had to wear a cold pack and took naps during her lunch break to get through the workday when her symptoms flared up.


“I could tell that I wasn’t as sharp as usual,” she says. “But I didn’t realize how bad it had thrown me backwards.”


The many unknowns about long COVID can make getting a diagnosis – often the first step to accommodations — a difficult task.


“A lot of people with long COVID will go to doctors again and again, and because there is not a disease to see and mark and treat … people are being told that it is psychological, that they need psych evaluations,” Schalk says. 

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In Linders’ case, she eventually received a diagnosis of ME/CFS, which stands for Myalgic encephalomyelitis/chronic fatigue syndrome. 


According to the CDC, ME/CFS is a complicated and serious long-term illness that impacts many different bodily functions to the point that it affects everyday activities. Infectious diseases are capable of triggering chronic diseases like ME/CFS, and researchers are exploring the connections between ME/CFS and long COVID.


Even with her diagnosis, there is still no treatment for her symptoms. The impact of Linders’ illness eventually led to her losing her job. Linders pursued and received Social Security Disability Insurance, which provides monthly benefits to people who are unable to work if they meet the government’s strict definition of disability. 

While long COVID continues to impact millions and poses more questions than answers, Schalk says the illness has sparked activism within the disability community. As advocates push for continuing COVID-19 safety measures and funding for long COVID research, Schalk says they are also welcoming long haulers into the disability community.


“That means helping more folks understand themselves as part of a larger community of disabled people who are dealing with ableism, so that we can all address ableism on a broader level,” Schalk says. 


Overall, Linders says the disability community has been welcoming, especially advocacy groups for ME/CFS. Still, the grieving process endures for Linders and others facing down long COVID with no clear end in sight. 


“People are so used to in this country … their worth being determined by how hard they work. And then once that’s gone, ‘Okay, what now?’” Linders asks. “Once you can’t work, it’s really hard and it’s really sad, and I’ve been able to find things that make me happy. So, hopefully other people will do the same.”

Wisconsin lawsuit threatens voting access

While long COVID has sparked conversations and activism across the nation, Wisconsin voting rights have become another key source of activism here. 


Historically, people with disabilities have been underrepresented in the electoral process due to physical barriers such as transportation or polling place accessibility, as well as legislative barriers, like restrictive voter ID laws. 


However, the 2020 election — which spurred false accusations of widespread voter fraud — has led to a whole new set of challenges for disabled voters. 


Barbara Beckert, the director of external advocacy for Disability Rights Wisconsin, says false fraud accusations have been the basis of multiple bills in the Wisconsin Legislature that would have made it more difficult for people with disabilities to vote. Beckert says some bills specifically targeted disabled people, such as a proposal that would have added more requirements for indefinitely confined voters to cast absentee ballots.

The 2020 election also spurred a lot of litigation surrounding election integrity, Beckert says. Among the flurry of lawsuits was Teigen v. The Wisconsin Election Commission, which questioned the legality of ballot drop-off boxes used across the state during the pandemic. 


In July 2022, the Wisconsin Supreme Court alarmed activists and disabled voters across the state by upholding an initial ruling from January 2022 in which a Waukesha County circuit court judge banned the use of drop boxes. The Waukesha judge also ruled that only the voter themself could return absentee ballots to their local election clerks — a big red flag for disability advocates. 


“We ended up in a situation where people with significant disabilities in the April [2022] election were told that if you can’t mail the ballot, you can’t vote,” Beckert says. “That’s what clerks were telling people.”


The Supreme Court ruling did not address whether mail-in absentee ballots must be delivered by the voter. Additionally, neither the judge in Waukesha nor the Supreme Court addressed the conflict between Wisconsin’s law, which states the voter must mail their ballot, and federal law, which allows someone other than the voter to mail their ballot. 


Days after the Supreme Court’s July ruling, advocates’ worst fears were realized. Meagan Wolfe, the Wisconsin Elections Commission head administrator, publicly announced that only the voter could mail their ballot.


“Now, alarm bells are going off everywhere,” says Scott Thompson, staff counsel at Law Forward, a nonprofit law firm that filed a lawsuit in federal court to challenge the ruling. 


In July 2022, the Wisconsin Supreme Court upheld a ruling that banned ballot drop boxes that were widely used throughout the state during the pandemic. In response, the City of Madison has decorated its ballot boxes in protest and blasted the court's decision as a "step backward" to make voting accessible. In addition to banning ballot boxes, the court's decision alarmed disability advocates about what the decision would mean for disabled voters. Photography by Perri Moran.

On behalf of four Wisconsinites with disabilities, Thompson and Law Forward argued that the ruling and Wolfe’s comments “illegally deprived” them of their right to vote and violated the Voting Rights Act, the Civil Rights Act and other federal laws.


Timothy Carey was one of those four plaintiffs. Carey, a resident of Appleton and the organizer of the online forum DisabilityVoice, has advanced Duchenne muscular dystrophy. He uses a power wheelchair he controls with his mouth and is on a ventilator 24/7. 


When he heard about the Supreme Court’s ruling in an email asking him to participate in the lawsuit, Carey seized the opportunity.  


“I was very mad. I was fuming angry,” Carey says. “You’re saying I’m less than you are. That’s what it felt like, and that gets me going. … They were trying to limit my rights, and so I went into high gear.”


In past elections, Carey has always relied upon an absentee ballot to vote. While he can leave his house, it is a cumbersome — and potentially dangerous — endeavor.


For Carey, who cannot use his arms, putting the ballot in the mailbox himself would be “impossible,” he says. The federal judge presiding over Carey’s lawsuit agreed.  


“Voters shouldn’t have to choose between exercising their federal rights and complying

with state law,” federal judge James Peterson wrote in August, ruling in favor of Carey and the other plaintiffs. 


Peterson ordered the Wisconsin Elections Commission to write instructions for clerks to ensure the rights of people with disabilities were upheld in accordance with federal law.

Private duty nurse Julie DuBois plugs a portable ventilator into an outlet for Timothy Carey at his home Saturday, March 19, 2022 in Grand Chute, Wis. He controls his wheelchair using his tongue. Voting in person is extremely difficult for Carey because he has advanced Duchenne muscular dystrophy and in unable to move his body. Photography by Mark Hoffman. Used with permission from the Milwaukee Journal Sentinel.

“There is no doubt that we basically won the lawsuit,” Carey says. “But it’s also like, ‘Wow, I was a part of history.’”


Peterson’s ruling “could not have been better,” Thompson says, and he credits Carey and the other plaintiffs for the case’s success. Thompson says the Carey case has become the “epicenter” of stories across the nation about voters with disabilities fighting for greater accessibility. 


“I think a lot of people were like, ‘Well, why wouldn’t you be able to go to a polling place? Why couldn’t you just do it this way or do it that way?’” Schalk says. “It allowed us to open up a conversation about the different ways that disability impacts folks and the ways in which they engage with voting.”


That’s exactly what Carey hopes people take away from the decision: awareness and a sense of responsibility to preserve voting rights for all. 


“The right to vote should be ensured for anyone,” Carey says. “Accessibility – there should be no question about it.”

Featured photo by Perri Moran.