If COVID-19 shuttered New York restaurants like a tidal wave, then disability pulled me from their dining rooms like a riptide.
I first fell ill with late disseminated Lyme disease in the early 1990s when I was 12 years old. That Lyme morphed into post-treatment Lyme-disease syndrome and myalgic encephalomyelitis, incurable post-viral neuromuscular illnesses that affect areas including the immune and nervous systems. These often degenerate as they progress, and every patient has a unique, erratic timeline. I spent my 20s working in theaters, classrooms, and restaurants, medically supporting my body and resisting progression. But by my 30s, physically demanding jobs hurt too much. I shifted to a freelance writing career a decade ago to steadily balance field and remote work.
Still, a few years back, I found myself wrapping in-person interviews as exhausted as if I’d run a marathon. Sitting on high bar stools became a problem: I nearly passed out at Hunky Dory when postural orthostatic intolerance syndrome skyrocketed my heart rate while plunging my blood pressure. A low-key dinner in the backyard of Bricolage with friends was too stimulating to my auditory cortex and triggered a migraine. Dining rooms and subway tunnels exposed landmines, so I progressively shielded myself with tinted glasses, a cane, and noise-canceling headphones. I minimized dining out. I declined networking invitations. I stopped in-person interviews. But illness eventually rendered me one of the 25 percent of adults in the United States living with a disability; over 60 million Americans breathe, love, and eat at this very second, many from various stages of indefinitely homebound life.
For such ill and disabled people, the pandemic offered a double-edged sword. “Chronically ill people have been training for this,” Carolyn Rivkees, a wellness blogger and chronic-illness advocate told me back when the world joined us in lockdown. Subsections of the disabled population, including those who are extremely immunocompromised and multiply marginalized, immediately became high-risk for COVID complications.
But in record time, workplaces, schools, and restaurants found creative ways to go remote. “Ill and disabled people haven’t had that,” says Lyndsey Ellis, a disabled woman who navigates the complex world of common variable immune-deficiency disease. “We’ve had to make do with our resources and personal assets and figure it out for ourselves.”
As a high-risk disabled food writer, I have mourned as the disabled community suffered blows and as chefs I admire permanently closed their doors. But I’ve also eagerly scrolled the menus available to us at home during the pandemic, knowing we have to get it while we can.
Societal misconceptions create an ableist narrative that ill and disabled people neither desire nor can afford delicious restaurant food. The former doesn’t hold water: You don’t have to be able-bodied to appreciate cassoulet and cocktails from M. Wells or cacio e pepe polenta from Hearth. Moreso, if you can envision the particular satisfaction of a Minetta Tavern Black Label burger after having the flu, then it’s not a stretch to imagine craving Erik Ramirez’s arroz con mariscos in bed during a fibromyalgia flare. You just need access to them.
The financial realities are more complex. A disabled person has 35 percent less disposable income than someone without a disability, according to a 2018 report from the American Institutes for Research. As Hannah Caddell, a largely housebound disabled wheelchair user with Ehlers-Danlos syndrome and comorbidities, points out, monthly disability benefits are not enough to independently live on, let alone feast with. These issues of systemic inequity must continue to be addressed and overhauled. But they make Caddell appreciate delivery dining that much more.
Yannick Benjamin, beverage director of the forthcoming restaurant Contento in East Harlem, who is paraplegic, considers those financial issues all the more reason restaurateurs should welcome disabled diners. And he points to the purchasing power that our community wields: An Open Doors Foundation study showed 75 percent of disabled people dine “out” at least once per week. The AIR study put the disposable income of working-age disabled people on par with other significant market segments. “Imagine if we did more for them,” Benjamin says. Contento is ready with a robust delivery menu, wheelchair-accessible spaces, adaptive flatware, a QR-scannable menu, and staff trained in accessibility conversation. “I’d be ecstatic,” he says, if disabled people utilized their physical and financial investment in Contento.
Benjamin doesn’t believe dine-in energy fully transfers to an at-home setting. I don’t either. But the pandemic has proved that necessity inspires creativity: Consider the baked-goods delivery boom, upscale bars pushing cocktail setups into homes, and chefs like Emma Bengtsson of Aquavit filming reheating tutorials. These are not Netflix-and-chill clamshells; for these, you break out the tablecloths and candles. Over the past few months, I’ve enjoyed seasonal ramen and cocktails from ROKC, gluten-free Singapore noodles and lemon-curry tater tots from the Expat, a table spread of Benyam’s mesir wat, several pastry pickups from By the Way Bakery, and a rainbow of jackfruit tacos and turmeric fries from Chaiwali, among other things.
A relatively new Harlem hot spot I hadn’t physically been able to get into before the pandemic, Chaiwali stands out when it comes to newly meeting homebound diners’ desires. “I want you to know there’s somebody at the end of this meal who cares about you,” chef-owner Anita Trehan says. Crafted originally with her daughter, who has Lyme disease, in mind, the vegan- and gluten-friendly menu is defined online — an accessibility detail many operators miss. She and her team often handwrite notes on to-go boxes and ticket slips, offering a touch of in-house hospitality that’s usually absent in takeout.
“There’s a genuine connection,” Trehan says of the response. Dine-out customers have converted to dine-in, and a second location will broaden her delivery range. “I wouldn’t have paid that much attention or seen the growth potential if it wasn’t for the pandemic,” she says. When I ask whether she realized the pandemic had brought her restaurant to a new audience of housebound ill and disabled people, she replies, “Truthfully, no.”
As vaccination numbers rise and we brace for the “Summer of Hedonism,” I worry that other operators won’t have such remote staying power. Llama Inn has stopped delivering. Dirt Candy’s to-go hours are limited, and, ever honest about industry realities, Amanda Cohen has posted that “ultimately doing any business this year kept us sane, but in the long run we can’t keep losing money on delivery.” While Bricolage once prioritized to-go dining out of necessity, it now stops offering that menu when the kitchen hits dine-in capacity, leaving future remote access unclear. I haven’t culled solid conclusions about many others — during tenuous times, we accept uncertainty.
Restaurant sales and jobs remain too far below pre-pandemic levels to project security, the National Restaurant Association reports. And hospitality inequity issues that were pushed aside last year deserve renewed focus. But these don’t negate how, when push came to shove, restaurateurs proved that there is emotional and financial value in connecting with people for whom dining rooms are not accessible. And while I have accepted that I may never grace a chef’s counter again without paying a great physical cost, I wish one chef I had spoken with this past year would have recognized a connection between their lockdown audience and the housebound disabled people they could still feed when “this is all over.” But none has.
Last year, Ellis predicted the scenario that’s playing out now for ill and disabled people. “It’s going to be difficult — Oh, wasn’t that so hard, that moment that we all experienced,” she said. And she was right: We’re now witnessing the able-bodied world moving back to social spaces after their blip of being housebound, without recognizing that we are here indefinitely. Rivkees points out that dining rooms won’t magically become accessible for disabled people and that dining out may still trigger negative health consequences for her. “My weekly takeout spot will lose me as a customer if they return to in-person dining only,” she says. Caddell adds that “losing all of the access that we have gained during the pandemic — to restaurants, schools, working from home — is a huge concern for my community.” I’m also concerned. Can the word hospitality include us, too?
