Disability

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    [post_date] => 2024-09-20 20:44:37
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How the rush back to the office hurts disabled workers—and everyone else.



It has long been possible to shift how we work in the United States, and all it took was a global pandemic and a massive sea change that personally affected white, middle class cis men for it to happen. “When everything first shut down in March 2020, my husband's employer was quick to find a way to allow their employees to work from home, including staggering times for people to come in and get their work computers,” Karistina Lafae, an author and digital media creator, remarks wryly. It was a stark contrast to the hostility she faced when she'd received a similar accommodation. “I got so much more work done at home than I could ever get done in the office,” she says, only to be pushed out of the workplace as a result.



Lafae has multiple disabilities, including Myalgic Encephalomyelitis/Chronic Fatigue Syndrome, usually just abbreviated as ME/CFS (and infamously referred to as “yuppie flu”), which make it easier for her to do her job when she’s able to work remotely. But prior to the onset of the pandemic, she experienced jealousy and resentment from coworkers over the same kinds of work from home accommodations that her husband and millions of other workers would later benefit from.



While many don’t think of it this way, widespread remote work during the pandemic was functionally a disability accommodation, a phenomenon Brooklyn Law Professor Shirley Lin refers to as “mass accommodations.” It was also one some disabled people, like Lafae, had been requesting for decades, only to face skepticism and denial, inadvertently highlighting a struggle over who deserves to be included in the workplace, and who is ultimately doomed to be shut out. For her and many other disabled workers, the pandemic marked a strange inflection point: Seemingly overnight, millions of white collar workers could work from home in order to protect themselves from the risk of infection and cooperate with mandatory shelter in place orders, normalizing a human-first work culture they’d long been fighting for, but had frequently been denied. 



Still, the change was accompanied by arguments and pushback that felt very familiar to disabled people seeking accommodations, revealing deep-seated fears and insecurities on the part of supervisors and upper management, and deeper flaws within American work culture at large. These arguments, like the pandemic, are not over, and the stakes for workers remain high. With the number of disabled people on the rise, and the needs of people with long covid becoming a cultural flashpoint, it’s critical to engage with why this might be the case, and to explore the rights of disabled workers and the origins of the social attitudes that have made their position so precarious in the first place. Not doing so would leave discussions about working conditions fundamentally hollow, particularly as work culture returns to “normal,” because discrimination that starts with disabled workers rarely stops there.



The United States is a place where productivity—or at least beliefs about productivity levels— is king, even though the nation is not in fact the most productive, despite its brutal work culture. Any perceived threat to our “efficiency” or “productivity” must be neutralized, and with it, any worker who might be deemed less efficient or less productive, something that has often disproportionately affected disabled workers. Prior to the pandemic, and in the rush to fill offices again after shelter in place orders were lifted, working at home—a very common workplace accommodation—was equated with “goofing off,” with managers implying that remote workers weren’t as productive and would take advantage of their employers. Workers might sleep in, slip off work early, play with their kids, stretch ten-minute breaks into hours, or spend more time gossiping in Slack than filing TPS reports (even though they might do the latter in an office, anyway).



Supervisors and members of the C-suite placed in-person office work on a pedestal as they tried to force people back into the office, even referring to it as “return to work,” arguing it was critical to work in person for group cohesion and collaboration. In tense all-staffs, deep schisms emerged between junior staff and higher-ups who hotly insisted that being remote undermined company functions. In fact, research suggests the opposite: Fully remote and hybrid schedules, that allow workers to select the conditions that work best for them, improve retention—saving companies substantial sums in hiring and onboarding—and are also characterized by more productivity, with the New York Times referring to the pandemic shift as a “productivity boom.”



This is true for all workers, regardless of ability, with productivity climbing an astonishing 11.2 percent in 2020—partially because of the mass loss of low-paying jobs, which left fewer people doing more high-wage jobs. But remote work clearly still played a role in the productivity boost, and not just for disabled people. Many former office workers enjoyed saving time and stress related to commuting, for example, and found it easier to lead their lives when they had more control over where and how they worked. But for disabled white-collar workers in particular, the opportunity to work remotely during the pandemic opened up a new understanding of what work could look and feel like, as they saw the personal benefits of being able to manage their own energy levels, pain, and somatic concerns while still participating in the workforce—something that, previously, was either routinely denied to them or required a tremendous amount of effort to obtain.



Once the option was taken away, many felt they were back to square one.



“I get a pit in my stomach that these things I’m asking for that are extremely reasonable are making it so that I’m being discriminated against or put in a pool that’s ‘Casey can’t do this job, she doesn’t have the energy,’” says Casey Doherty, a Washington, D.C.-based disabled woman early in her career. “[But] I’m an adult and I know what I need to do to be able to work still.”



Women like Lafae and Doherty have chronic illnesses that are sometimes referred to as “contested” or “medically unexplained,” making them a part of a subset of disabled workers who can’t always “show” their disabilities to employers when seeking an accommodation, but who benefited greatly when remote work became the norm. Contested illnesses include fibromyalgia, ME/CFS, multiple chemical sensitivity, Lyme disease, and, more recently, long covid. They are also sometimes treated by society and the medical profession as “psychosomatic”—by which people mean “fake,” and not its actual definition, “a product of complicated interactions between the mind and body.”



These conditions have an unclear etiology paired with sometimes erratic, frustrating, and very real manifestations for patients, who tend to acquire lengthy, labyrinthine medical records as a result.  Because of this, people who experience contested illnesses may be labeled “chronic illness fakers” manufacturing their distress for attention, a phenomenon writer Anna Hamilton refers to as a “politics of disbelief.” Notably, they are also more common in women, with Black, Indigenous, and Brown women bearing the brunt—the very same women who are less likely to be taken seriously when they present their symptoms to a doctor, thanks to the pernicious presence of medical racism. Members of these communities are also much more likely to experience misdiagnoses, sometimes with fatal consequences.



The medical establishment’s distrust of these women often validates societal attitudes at large: If even a doctor, the ultimate authority figure, doesn’t think someone is experiencing a real problem, why should anyone else?



Disability does not occur in a vacuum. Disabled women and disabled people of color are profoundly affected by their experiences of race and gender. These differences in experience can also be amplified by contested illnesses because of their seemingly invisible nature. Workers cannot necessarily point to specific test results, particular symptoms, or medical histories to “prove” their illnesses to employers, which means that, for example, racist attitudes about “laziness” can collide with a worker’s self-reported symptoms. The needs of a disabled worker may also vary day to day: On one day, they may have the energy and focus to allow them to pass as non-disabled; on another, they may be confined to bed. Some also need access to stigmatized care, such as opioids for management of chronic pain. All of this sets them up for skepticism from a culture that is already primed to distrust disabled people, women, and people of color; that skepticism then feeds back into attitudes from authorities in the workplace who contend that disabled people are lying or exaggerating their needs.



All forms of disablism are harmful in the workplace—and beyond—but a closer examination of the specific attitudes that surround contested illnesses is merited, especially in ostensibly progressive circles, if we want to have any hope of eradicating it. While those on the left often attempt to display positive change and evolution in the way they address the disability community, contested illnesses are still treated with disdain and disbelief—including, sometimes, by fellow disabled people who attempt to draw lines between themselves and the chronic illness community. This creates an inherent lack of solidarity that can leave chronically ill people out in the cold while ultimately undermining everyone’s equitable access to society.



Intergenerational work by the disability community, who have put their own bodies on the line in the fight for civil rights, has created a legal framework of protections and supports for disabled workers. However, this framework is still scrambling to understand people with invisible illnesses and their needs, both at an individual and an institutional level. In the United States, disabled workers are entitled to “reasonable” workplace accommodations under the Americans with Disabilities Act. Some workplaces provide accommodations via a very flexible process rooted in the needs of the worker, while others take full advantage of an “interactive process” that starts with an accommodation request and can require weeks or months of negotiation and documentation. This process can be so frustrating, demoralizing, and infantilizing that some disabled workers give up entirely. It’s also often even more complicated for those with contested illnesses. This is very much by design.



“I’m spending so much money just to get a letter [from my doctor] that says, ‘Casey’s sick,’” Doherty says, describing the onerous repetition behind a hard-fought remote work accommodation, which requires her to obtain a new letter every three months for her employer. It’s hardly a unique experience, but it’s one that can be especially trying for people with chronic illnesses, who are more likely to face requirements to continually recertify.



While these issues may pertain to disability specifically, they don’t stop there. Disbelief by default creates barriers to inclusion that require a cultural shift to dismantle, and the tolerance of distrust for one class of workers also opens the door for distrusting all. It’s a slippery slope: Are menstruating people, for example, lying about or exaggerating painful periods? Are parents overstating their need to leave work on time to pick up children from school or childcare facilities? All workers deserve access to the conditions that allow them to do their best work, but this requires a working environment that believes all workers when they share what those conditions are.



No diversity, equity, and inclusion committee, employee resource group, sensitivity training, or interactive process can make up for the fundamental belief that disabled people are not telling the truth, and that, by extension, their needs in the workplace are a product of attention-seeking or laziness. But if all disabled people are positioned as liars, the particular viciousness that underlies responses to chronic illness is especially sharp for a community already culturally treated as “fakers,” or people attempting to exploit the system in some way. 



Unfortunately, the notion that accommodations can be highly customized to the individual is novel, and the more abstract an accommodation feels, the less it is trusted, and not just by management, but also by colleagues. Disabled workers across the board routinely report frustrating encounters with coworkers who question or disrespect their accommodations, sometimes with support or affirmation from the supervisors who should be curbing such behavior. This hostility feeds the rise of bitter attitudes about disabled workers somehow “getting away with something” or receiving “special treatment”—often from people who don’t need these same accommodations themselves, and who aren’t materially impacted by a workplace’s decision to provide them. Those with chronic illnesses can experience this more acutely.



“People say ‘I know you’re doing your work,’” Rosie says, who works in clinical research in the Midwest and is using an alias to protect her identity. “This has always been very interesting to me, that I’m not one of ‘them.’”



Rosie, like other disabled workers—and not just those in the chronic illness community—reports a constant pressure to perform in order to continue to avoid being “one of them,” fearing she might otherwise inadvertently contribute to perpetuating disablism in the workplace. A disabled worker may also be more likely to push themselves past their limits or suffer in silence, similarly fearing disbelief and subsequent discrimination while also feeling as though they represent the entire disability community, especially since disabled workers are often compared to each other in a workplace, in an industry, and in general.



In a culture where disability identity has become memeified and the notion of “acceptance” is pedaled in a never-ending slew of awareness days and inspirational memoirs, there’s a distinct lack of action and understanding when it comes to making meaningful structural changes that might actually change this. And these changes shouldn’t just be for office workers: In order to safely work from home during the pandemic, white-collar workers were, of course, supported by an army of “essential workers”—health care providers, grocery store clerks, power plant employees, and many others who needed to work on site to keep society functioning—for whom remote work was an abstract concept, but who still needed accommodations of their own such as social distancing and PPE to do their jobs safely. For them, the fight over remote work while they put their lives on the line for basic protections was a reminder of how undervalued their lives and bodies—many also disabled, thanks to occupational segregation—are under capitalism. If we want to make meaningful structural changes, they must be inclusive of all workers.



The brief shift in office culture that emerged during the pandemic invited the possibility of something greater: What if all workplaces had flexible accommodations to support workers? What if these accommodations weren’t hard-fought, but simply part of how the workplace operates? What if we valued all labor, and laborers, in the same way we protected the lives of people working remotely during the pandemic? Rather than being exceptional, remote work could be one among a number of examples of disability inclusion in the workplace, protecting disabled sanitation workers and booksellers, nurses, and bus drivers, too.



If the pandemic represented a moment when it might be possible to reframe the way we view accommodations and disability in the workplace, the window of opportunity seems to be rapidly closing. The white men are back in the office, and they’ve dragged everyone else with them, in a series of bitter workplace-by-workplace fights that have only further illuminated the need for structural culture change. Office culture is not designed for the benefit of workers: It is for the bosses, and capitalism. The push to get butts back in office seats has again called upon erroneous beliefs about productivity and forming social connections as its supposed driving force, but has also revealed an economy heavily dependent on real estate investment, with offices an industry unto itself that faltered when companies started scaling back.



Instead of reaping the benefits that downsizing their premises might bring, most companies would rather double down on their investments in property than actually invest in the well-being of the people who work there. In the process, workers who still need remote accommodations are now facing escalating resistance that, in some cases, is forcing them out of the workforce altogether, particularly in the case of those who need to continue masking and avoiding public spaces to protect themselves. Allowing this to happen is in itself a form of disablism, because at best, it suggests an inherent distrust of disabled workers and their needs; and at worst, a belief that disabled workers are somehow more disposable than their non-disabled peers. Neither are acceptable, and both are incredibly harmful to all workers, whether or not non-disabled workers realize it; especially when accommodations can potentially benefit an entire workplace—as seen in the case of remote work and offshoots such as hybrid schedules and flex time.



Fighting disablism in the workplace requires going against the politics of disbelief; cultivating cross-community support; and proactively defending disabled workers of all backgrounds and experiences, on-site and off, acknowledging that remote work is only one example of an effective accommodation. Without these support systems, disabled workers will continue to experience the same hostility women like Lafae did—a resentment that some disabled workers say is intensifying again as workplaces roll back remote work benefits. Lafae ultimately turned to freelance work to accommodate her needs, setting her own terms of employment. But she remains a firm believer that no disabled person should be held back at work by their accommodation needs, and that workplaces overall benefit from disability inclusion by fostering an environment where accommodations are rooted in company culture, and, critically, not up for debate.



That culture shift doesn’t have to be hard, and it can have a profound impact on disabled workers that helps them do their best work and lead their best lives, benefiting them and everyone around them.



“When I was forced to work in an office around other people all the time, I tried all kinds of things to counter the incredible drain on my energy and psyche as a whole,” says James, a high-level employee at a large international company who asked to use a pseudonym for privacy. “I'd take really long bathroom breaks, ‘mindfulness breaks,’ ‘prayer breaks,’ lock myself in an open meeting room for a half hour or so, all of that. But it wasn't until I was able to work from home, in a comfortable, quiet, controlled setting, that I realized I was actually good at my job, that the work I did was high-quality and worthy of praise. I had never felt that in a workplace before.”



A culture shift from a disability-hostile working world for chronically ill people, and disabled people more broadly, to one in which disabled workers are treated with dignity and respect, however, also requires reckoning with a poor historical record on chronic illnesses and disablism at large, and all of the attitudes that feed into it. These include devaluing Black women’s pain, attributing many women’s very real physical symptoms to “hysteria” or “neurasthenia,” and insisting that it should be possible for people to bootstrap their way out of disability. And enacting this change necessitates solidarity across different categories of disability, and a more expansive view of disability culture on the part of the left. Without it, all workers will continue to suffer, disabled or not.

    [post_title] => Who Do Workplaces Actually Accommodate?
    [post_excerpt] => How the rush back to the office hurts disabled workers—and everyone else.
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    [post_modified] => 2024-09-20 20:46:46
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