AILSA CHANG, HOST:
New guidance from the CDC says most healthy people in the U.S. don't need to wear masks indoors anymore. But what about people who are immunocompromised or have health conditions that put them at higher risk?
CHARIS HILL: I live with a condition called axial spondyloarthritis.
CASS CONDRAY: I live with ulcerative colitis.
JOHNNIE JAE: I have been living with lupus since I was 9 years old.
CHANG: That was Johnnie Jae, Cass Condray and Charis Hill. Jae says, for her, lupus attacks her kidneys, her heart and lungs.
JAE: I was told right off that if I were to get COVID, my chances of survival would be less than 15%.
CHANG: And aside from ulcerative colitis, Cass Condray experienced sudden cardiac arrest in 2020 and was in a coma for 37 days.
CONDRAY: Being on a ventilator for that long has left my lungs and my respiratory system more vulnerable than the average person's.
CHANG: And Charis Hill's condition causes inflammation and pain in their joints.
HILL: I take medications that suppress my immune system in order to treat that disease.
CHANG: When I spoke with the three of them, we talked about the early days of the pandemic, when many people wore masks wherever they went and demanded flexible remote work accommodations. I asked them, at that time, did it feel like the world was trying to share some collective responsibility for staying safe?
JAE: This is Johnnie, by the way. It did feel a little less lonely. And also, there was a lot of resentment as well just how fast everything was able to be more accessible through having online work options to be able to work remotely.
CHANG: You mean you felt a little bit resentful watching the world shift so quickly when it affected them?
JAE: Yes, exactly - when it affected them because, you know, previous to the pandemic, you know, there were times when you would lose out on work opportunities because those options weren't available to you as a disabled person.
CHANG: Right.
JAE: You know, they would tell you that it wasn't possible. It wasn't cost-effective. But all of a sudden, you know, when this pandemic hit, suddenly, it was a possibility. And it happened so quickly.
And it was a little bit of a relief, too, because a lot of my work is public speaking, and it's a lot of in-person events. But because they were moving over to virtual options, you know, I was able to pick more work up and, you know, we were able to make it through that first year of the pandemic. But then year two started. And halfway through, they started to pull back these remote options.
CHANG: What about you, Charis? Was it the same for you at least at some point during this pandemic?
HILL: I agree with Johnnie. Initially, I would say that I was naively hopeful and optimistic when accessible things like remote education, remote work, remote health care options, masking, distancing were initiated. But like Johnnie, I felt resentful because, for decades, disabled people have fought for these same accommodations. It felt like a slap in the face as a disabled activist. And I was naively optimistic that these precautions would continue beyond the pandemic and be normalized, but we're seeing the opposite of that happen.
CHANG: Right. Well, Cass, I want to turn to you. If remote accommodations end up going away entirely at your school, what do you think you're going to do?
CONDRAY: So I'm in a complex situation because I am also in a lot of labs - so laboratory classes. So chem lab - there's no way to make an online combination for that. You have to show up. Unless you have an active case of COVID, for labs, you have to come.
CHANG: What about having an active case of being immunocompromised?
CONDRAY: I know. It's - I mean, I really don't have any words for, like, how it works because I have to, you know, get these courses done. Like, it's, like, a core requirement, but it's really just a not great environment to be in if you are high risk.
CHANG: Certainly not. The thinking now is COVID will never be completely eliminated. The world will always live with some form of COVID, which will always present some risk to immunocompromised people. So if COVID is here to stay, what are some things other people can do that would allow all of you to more fully live your own lives?
CONDRAY: It's Cass. I guess I would just make sure you knowingly do not try to hang out or, like, do anything while you are sick or may think you are sick because every time I get sick, there's a chance that my ulcerative colitis will go back into a flare, and that is not a very fun time. Getting sick can trigger a flare. And obviously, everything that comes along with being sick in a body that is already very medically fragile and complex is quite terrifying. So I just really wish people would not come to school or work or social situations or things like that sick.
CHANG: At a very minimum, stay home if you are sick. Johnnie, what about you? What would you like to see other people do to allow you to expand your freedom a little bit?
JAE: It's very elementary. You know, wear a mask. Get vaccinated. You know, socially distance, and be mindful and respectful of the people around you, and that means making changes. And these changes aren't going to be temporary. They're going to have to be permanent changes that we're going to have to adjust to. And those are being, you know, masked up in public and being able to provide remote options for work and for education.
And, you know, they also need to be investing in upgrading, you know, the buildings' air ventilation and filtration systems, especially in schools and medical facilities. And they really need to start prioritizing people over profit. You know, that's their priority.
CHANG: What about you, Charis?
HILL: I think just reminding people normal has never been good for disabled people, and returning to the normal that we had pre-COVID would not be good for disabled people. I think the biggest changes that I would like to see are on the bird's eye view, which is health policy that centers the people who are most impacted by COVID. Because if we center those most impacted by COVID, we're - everyone would benefit.
In the disability community, we often say nothing about us without us. And so I would ask that disabled people are at the table moving forward, making decisions alongside epidemiologists and public health leaders, elected officials because we know how to take care of complicated health issues. It's what we do for a living. We know how to do it with limited resources because the Social Security Administration doesn't pay us enough to survive on. I mean, we are the answer, if only we could be welcomed at the table.
CHANG: That was Charis Hill, Johnnie Jae and Cass Condray. Thank you to all of you so much for sharing this time with us.
HILL: Thank you.
CONDRAY: Thank you so much.
JAE: (Non-English language spoken).
(SOUNDBITE OF EL TEN ELEVEN'S "FANSHAWE") Transcript provided by NPR, Copyright NPR.
