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Surviving a pandemic is difficult enough. But for disabled people with chronic illnesses or compromised immune systems, catching COVID is much more dangerous and far more likely to be lethal.
Last week, a U.S. district judge struck down the Centers for Disease Control and Prevention's national mask mandate on planes and public transportation. The decision was just another instance of how disabled people are being left behind in the nationwide effort to normalize the pandemic.
This situation is all too familiar to Tinu Abayomi-Paul, a writer and community organizer in Arlington, Texas, who is immunocompromised. She contracted COVID when her children went back to school in January, after nearly two years of masking and isolating. Two months on, Abayomi-Paul told me about her continued complications from COVID and the protections she wishes that Texas would put in place to keep her safe.
This interview has been edited for length and clarity.
At the onset of the pandemic, what concerns did you have about your health?
I'm asthmatic. I have lung damage from the last time I had pneumonia, and I have a compromised immune system. I also have chronic lymphocytic leukemia (CLL), and an infection could trigger its return. So if I had caught COVID without a vaccine or drug to help, I was sure I would die.
How has the pandemic changed the way you live?
It didn't change a lot because I was already housebound 70% of the time. There were long periods where I was working from bed. What was new was having people in the house all the time as I was trying to work, especially kids.
I kept hearing that if I just kept my mask on and stayed away from people and got all of my vaccinations, I would be fine. I'm not going to be fine. There's no place that's safe for me anymore except inside my house.
What protections were adopted in your community?
In the beginning, Tarrant County was very good. Testing sites were everywhere and not crowded. But [it wasn’t easy for everyone to access those services.] Some information was hard to find if you couldn’t go to the internet; maybe you had an accessibility issue with reading the pdf. At testing sites that weren’t drive-thru, there’d be no place to sit down. And even then, under the mandate, people in Texas were not masking.
What measures would have made you feel safer?
Social distancing, policies forcing people to wear a mask unless they’re eating, a lot more talk about the consequences of COVID apart [from] death. I think if the messaging had been more about how people who don’t follow safety measures are hurting themselves, rather than others, things would have gone better.
Moreover, when we did have mask mandates, people ignored them. People who didn't believe that COVID was real just went about their business.
How did you end up getting COVID?
I live with two sets of twins. Me and my sister, their birth mother, have lived together almost their entire lives, so I feel like they're my kids too. Come January, the two youngest kids had to go back to elementary school. After their first day back, I started getting sick. My mother, a nurse, was overseas, so she couldn’t see me. I was scared of going to the hospital because if I didn’t have COVID, that was the best way for me to get it.
Then, I started feeling like I was crashing. I was really struggling to breathe. At first it was only after exertion, like going down a flight of stairs. But then I couldn't even walk. I had to move seated like a toddler. In two days I used up an emergency supply of oxygen for my asthma. This whole time I was wondering if I was overreacting.
I tested positive for COVID. And not only COVID, but COVID pneumonia [damage and inflammation in the lungs caused by the coronavirus]. And not only COVID pneumonia – my cancer came back.
That's part of why I'm so up in arms. People will say, “I’m wearing a wristband to support cancer patients.” OK, but you can't put a mask on to protect cancer patients? They make it sound like it's a freedom of choice issue. I feel like we should all have the right to not die on account of other people's actions.
How are you doing currently?
Two days ago I had to go to the cardiologist to figure out why I'm having heart palpitations. They said it could be long COVID or an infection. They’re having me monitor my blood pressure.
I still have to go on oxygen now and then. As soon as I use it, I feel better, but when I need it is completely random. I can go three days without needing it, and then will have to use it a lot for a few days. COVID pneumonia is a whole different beast. Instead of fluid in your lungs, it feels like sand or gravel.
I still can't carry things and walk or else I'll be out of breath. I can’t exercise. I can't do my writing work. Before I got COVID, I had just gotten some steady long-term gigs, but I'm not going to be well enough to do any of them. My next big thing is in October. So I have to figure out how I am going to survive until then. I've got my niece and nephews to think about. My mother went back to work when I got cancer in 2016, and I want her to retire. So, it's a lot.
What misconceptions do able-bodied people still have about COVID as it relates to disabled, chronically ill, and immunocompromised people?
People don't understand how many disabled, chronically ill and immunocompromised people are among them. Many disabled people I know have to hide or mask their disability in some part of their life out of fear of being shamed.
Where COVID is concerned, the only metric that people really look at is death. But so many other things could happen. A UCLA study has found that at least a third of COVID patients will become disabled with long COVID. We’re about to have a very rude awakening in this country.
So please wear a mask. For your own sake and your family's sake, if for nothing else, just wear a mask. It's not that much of an ask.
What other disabled advocates do you recommend following on social media?
@Imani_Barbarin, @Mae_DayJ, @AlexisSMobley, @migrainesallday, @migrainediva, @nolan_syreeta, @SFdirewolf, and @EbThen.
— Samantha Grasso (@samjgrasso)
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