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Will a return to ‘normal’ shut out people with disabilities?

Will a return to ‘normal’ shut out people with disabilities?

Picture of Jessalyn Small
(Photo by Ajpek Orsi/Getty Images)
(Photo by Ajpek Orsi/Getty Images)

The first time I wore a mask at the grocery store during the COVID-19 pandemic, I caught myself going through my regular motions of forcing smiles at strangers who caught my eye. I rarely go to the grocery store. Usually, my husband runs these sorts of errands alone. I have Ehlers-Danlos Syndrome, which causes — among other things — widespread pain and chronic fatigue. I am also autistic. Both factors make places like the grocery store difficult for me. The forced interactions with strangers, unspoken social rules, and pressure to make quick decisions overwhelm me. But my husband and I hoped that between the two of us, we could score two packs of toilet paper to share with my parents.

Wearing the mask felt almost as strange as seeing the rows of empty grocery shelves. But when I realized the mask created a layer of social distance between me and everyone else, on top of the 6-foot distance, I had a new sense of freedom. To some extent, I could let go of the other, intangible “mask” that I, like so many autistics, often wear in public. I usually expend a lot of mental energy on monitoring my facial expression. Now I didn’t have to work so hard to blend in. I could let my guard down a bit. It was liberating. 

I would experience that feeling repeatedly during the pandemic. I wished to myself that things were always this way.

Of course, I don’t mean I wished for there to be a devastating global viral outbreak. But I relish many aspects of what this has done to our culture and society. While the past year has left many people feeling disconnected from their communities, it has allowed many disabled people to participate more than ever before. I am terrified these positive changes will vanish as quickly as they materialized once the virus is under control. 

As vaccines roll out, millions of people express excitement about resuming activities, and communities rush to reopen, the prospect of a return to “normal” is causing fear among the many disabled people who have benefited from changes that have opened up our worlds.

The last time I worked full time was almost five years ago. I was great at my job but health issues, which had not yet been diagnosed, caused me to show up late, take frequent and lengthy breaks, and often miss work entirely. I was fired. I think back to how much I enjoyed that job and the stability it provided. My husband and I struggle on just one salary, as I work toward my degree online. I can’t help but wonder if I would have been able to continue working through my health issues and earning a living if I had been allowed to perform my job remotely something that would have been simple, as it was done entirely on a computer.

During the pandemic, employers who previously refused to offer work-from-home options were forced to move operations out of the office and into the virtual realm. A Conference Board survey of 330 executives, mostly at large corporations, found that only 12% were willing to hire fully remote workers before COVID-19. By September 2020, 36% were willing to do so. Many companies found that remote work was often more productive and cost-effective

As vaccines roll out, millions of people express excitement about resuming activities, and communities rush to reopen, the prospect of a return to “normal” is causing fear among the many disabled people who have benefited from changes that have opened up our worlds.

People who have thrived working from home over the past year have reason to fear this option will end. At least 40% of employers surveyed by The Conference Board plan on having employees return to the workplace in the next several months, and only 15% say they will make in-person work voluntary for everyone going forward. Continuing to offer work-from-home as a reasonable accommodation for employees who would struggle to perform their jobs in the office would open vast opportunities for people who have long been shut out.

Allowing spouses to work from home can also be life-changing for disabled people. My husband worked from home throughout the pandemic at his customer service call-center job. His employer indicated that this would likely become a permanent option for those who were successful and productive as remote employees. But several weeks ago, the company announced it will begin phasing everyone back into the office, even before everyone has been vaccinated. 

Having my husband at home not only eliminated commute time and allowed us to spend lunches and breaks together, but it also helped me with tasks such as meals. This allowed me to thrive in a way I hadn’t when I was by myself every day. “Organizations should understand that employees who are at high risk themselves, have high-risk family members, or have dependent care responsibilities may feel they have no choice but to quit their jobs if returning to the workplace becomes mandatory,” said one of the Conference Board researchers.

Most public schools will stop offering online options, to the detriment of students who have excelled without the stressors of in-person classes. I have been lucky enough to attend university online for the past several years, I regularly make the dean’s list, and I will soon graduate with my bachelor’s degree in creative nonfiction writing. But back in high school, I dropped out and got my GED. The social challenges were unbearable, even though I was in “gifted and talented” classes. If I’d had the option to go to school remotely, I might have been able to apply my passion and intellect to my education sooner. School closures have been challenging for many children and teens, but what will happen to those have found success when they were not held back by the obstacles that in-person school can present to a disabled student?

Even seemingly small changes may shrink the worlds of disabled people in ways that most able-bodied people won’t realize. Over the past year, many grocery stores designated early hours for elderly and immunocompromised people to shop in less crowded environments. This provided a measure of independence for people who previously had to rely on someone else to shop for them. Many stores, including large grocery chains, have already backed away from this accommodation, despite the continuing need.

Events that had always taken place in person — concerts, worship services, weddings, even Comic-Con — were suddenly accessible to everyone when COVID-19 forced them to move online. No one had to worry about travel, lodging, getting around all day, waiting in lines — all major concerns for disabled people, no matter how “accessible” an event tries to be. A completely virtual event meant that everyone had the same experience, in a way that has never been possible before. Will disabled people be able to enjoy this sort of inclusion in the coming years?

And will we have to return to doctors’ offices? After the federal government and insurance companies loosened restrictions on payments for telehealth, its use skyrocketed: By mid-June 2020, Medicare recipients logged 1.7 million remote health visits a week, up from just 13,000 three months earlier. By late 2020, some insurers were already cutting back on coverage —  a major reversal for patients who struggle with leaving their homes, lack transportation or child care, or cannot get time off work.

In the first year of the pandemic, disabled people wondered why it took a global crisis to force changes we’ve demanded for years. Now we wonder what it will take to make the gains in accessibility and inclusion part of our culture’s “new normal.” Don’t return to the way things were before. Not completely. Don’t force us back into the darkness when we have just been allowed some light. Let’s promise to work to make the new normal brighter for everyone.

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Comments

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What an insightful article! What a great view of all the positives something so negative could bring! Hope I get to read more of your articles!

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This article brought up issues I hadn't thought of before. The stats were enlightening too. I've enjoyed the perks of working from home and have expressed this to my supervisor. I've certainly worked more, but I've had the freedom and time to care for my physical and mental well-being. Healthy, happy employees make for productive employees. My company sends out health newsletters. Let's see if they walk the walk and let me continue working remotely. Why can't we keep some of these pandemic changes for everyone? Great article. So we'll written.

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Thank you for bringing attention to an unseen struggle for accessibility that found some success in a roundabout way. There has to be way forward that maintains some of what has been achieved in a time of urgency that has proven the capacity for long needed change.

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Thank you for sharing! This is such an important topic.
It would be helpful to many if leaders paused, reflected, and consulted before jumping back into the fray.

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