Tim Jin is one of the people celebrating the Centers for Disease Control and Prevention’s new guidance stating that vaccinated people do not have to wear masks. It is not because he is against masks or tired of wearing one—he is unable to. Jin, 46, has cerebral palsy and frequently drools. Fabric next to his mouth quickly becomes too wet to wear.
Like most CDC announcements since the start of the pandemic, the latest has been met with confusion and mixed feeling—including among those in the disability community. Those with immunocompromising conditions and parents of disabled children in particular have been concerned about the change, given their or their children’s high-risk status. It seems like it will be impossible to know who is vaccinated and who is just getting away with going maskless. But the disability community is not a monolith. For some with intellectual and developmental disabilities, like Jin, the CDC’s announcement that it is safe for vaccinated people to be maskless provides a glimmer of hope.
Before the pandemic, Jin lead an active life in Orange County, California. He worked at an education publisher for 15 years, frequently traveled for speaking engagements and pleasure, and even gave a TEDx Talk. He serves on the boards of multiple disability nonprofits, including CommunicationFirst, which is focused on advocacy by and for people who rely on alternative modes of communication like typing instead of speaking. Jin communicates by typing with his toes. But COVID-19 has upended Jin’s life. He no longer works. He cannot travel. “I’ve been isolated in my house since the pandemic has started, due to the fear of getting sick,” Jin wrote to me in an email. As a person with a developmental disability, he is at high risk of complications and death from COVID-19. “More importantly, my ability to socialize with people has been greatly reduced where I don’t feel confident anymore,” he added. These might be familiar problems; most Americans living through the pandemic have experienced a loss of activities, social life, and even work. But there are also workarounds, like socializing over Zoom or taking outdoor, socially distanced walks. These aren’t viable solutions for all disabled people. In a recent study conducted by the nonprofit Easterseals, isolation was found to be the highest source of stress for the disabled people served by the organization, beating out worries about finances, physical health, and access to disability services. I asked Jin about what he was excluded from doing because of the mask mandate in his state. “Pretty much everything,” he answered. “Because of the mask issue, my well-being has stopped.”
To be clear, Jin wants to wear a mask and has needed the protection a face covering provides (as well as the protection provided by other people wearing masks). Jin has tried many alternatives to traditional cloth and paper masks, including, memorably, a full-face scuba mask. The scuba mask didn’t work out. “I couldn’t get enough oxygen,” he explained. He finally settled on an ingenious solution: a motorcycle helmet. “It [covers] my entire face and still lets me breathe,” Jin said. He doesn’t feel too self-conscious about wearing it. “People always look at me no matter what because my disability is so pronounced,” he told me. “I’m an outgoing person.” And while the helmet enabled him to go to out, it wasn’t exactly comfortable to wear. Donning it involved putting up with “heat and sweat and no ventilation.”
Jin is excited to quit wearing the helmet soon. When I asked Jin if he was vaccinated, his reply was an emphatic “YES,” followed by multiple exclamation points. He’s “counting down the days” until he’s at full immunity. He does not plan on continuing to wear his motorcycle helmet after that. “I have built up my neck muscles enough!” he exclaimed.
For some, wearing a face covering of any kind has been downright impossible. That’s true for Adam, 31, who lives in Massachusetts, has a developmental disability, and needs support to do many daily tasks. I interviewed Adam and his mother, Sarah Coletti, last fall for the American Prospect. Adam’s world had shrunk dramatically because of the pandemic, they told me: In March 2020, the state of Massachusetts closed schools, state parks, and day programming for adults with intellectual and developmental disabilities. His group home stopped admitting visitors in a failed attempt to prevent spread of the coronavirus to residents. Adam moved back home with his parents—if he hadn’t, they wouldn’t have been able to see each other at all. Adam is both at high risk for COVID and too sensitive to touch on his head and face to tolerate wearing a mask. This meant that going to indoor settings where he’d be near people outside his household was off the table. To help other people feel more comfortable, Adam and his parents came up with a solution to comply with outdoor mask mandates and social norms. “He keeps a bandana in his teeth, which doesn’t work like a mask, but at least when we’re taking a walk [outside] people don’t freak out,” Coletti told me last year.
Adam’s life has improved dramatically as the COVID-19 vaccination campaign has ramped up; Massachusetts has one of the highest vaccination rates in the country, and Adam has been vaccinated himself. The day program he attends has reopened, and he’s been able to move back into his group home, his mom told me. Even with the new CDC recommendations that say it’s perfectly safe for Adam to be out and about sans mask, they aren’t going full speed ahead back to normal. “I’ll probably wait a little while before I take him grocery shopping,” Coletti told me. “We’re still a little wary of public spaces.” But they did have a picnic planned with family—his cousin, aunt, and uncle, all of whom he hasn’t seen since before the start of the pandemic. Like everyone else, Adam is still adapting to the change. “This morning he was almost ready to give his cousin a hug, and then he had to back away. He wasn’t sure if it was OK. We’re all doing that, we’re all a little unused to being with people,” Coletti said. It’s a process. But public health guidance that provides some of the most isolated people a little more freedom is an important step.
