Written Story by Rebel Fayola Black

I haven’t gotten COVID….yet. But it has changed my life, for worse AND for better.

I have worn a mask every time I’ve gone into public since Spring 2020. First, I sewed them  myself, perfecting a pattern with a wire nose piece that fit my face snugly. The fabrics were so  pretty, and I used cool elastic for the ear loops. Now, I wear N-95’s with the headbands, because  they are so much safer. I’ve worn a mask every time I’ve gone into public since Spring 2020  despite having a trauma history of having my mouth and nose covered and being unable to take  a breath. It’s my responsibility to myself and my community to stay safe(r), even when it’s  hard…even when it triggers a trauma response.

When the mask mandate was dropped–the government kowtowing to business interests over  our health–it made it so much harder to go into public. It’s hard to take precautions when it  isn’t normalized, and it isn’t safe to be in crowds (such as a grocery store) when no one is  masking. When healthcare settings dropped the mask mandate, I felt actually in danger. Going  into Emergency or Primary Care settings where no one is wearing masks feels horrific. When I  see a provider wearing a mask, I thank them in order to reinforce their behavior. (To all the  people reading this who still wear masks, THANK YOU!)

See, I’m Disabled, low-income, have diabetes and a low immune system (low IgG), mast cell  disease, and am fat. When I get sick, I get REALLY sick. Statistically, I am less likely to be  prioritized by the healthcare system if there’s an outbreak that results in healthcare rationing. I  also have caregivers who come into my home every day: they wear N-96 masks as well, but I still  worry.

I was Disabled before COVID: I am mostly housebound. I’ve been isolated for years. It’s lonely,  and I often couldn’t attend meetings in person. I stopped being able to work due to complex  pain and chronic fatigue. I had trouble getting to therapy. Getting groceries was an almost impossible task for me even before COVID.

During COVID, suddenly it was more prevalent for my non-Disabled friends to be open to  meeting and hanging out over Zoom. So my social and political world opened up. I was finally  able to engage in organizing from my bed! I’m currently on a steering committee for a  transitional house for LGBTQ2SIA+ people coming out of incarceration, and that is exciting and  liberating. We meet remotely.I was able to see my friends’ faces when we talked, and they were  open to chatting more frequently. Instacart was more normalized and I felt less guilty using it  when I needed to.

I was able to start a Disability Justice and Racial Equity consulting business: Leaping Water. I can  engage with colleagues around the country. I am able to work from home, which is an access  need I have advocated for for years–to much resistance from the non-Disabled working world.  Using Zoom was normalized, rather than fringe. So I’m able to do work and attend trainings and  conferences and organizing meetings from my home, where I can breathe purified air and be  comfortable with my legs up (an access need).

To be honest, I resented when non-Disabled people complained about being newly isolated and  burdened by remote work, remote socializing, remote conferences, remote anything. “It’s just  not the same as being together in person!” they lamented. While I have empathy, it felt like a  slap in the face to all of us who have been struggling to connect to the outside world for  decades…even longer for our Disabled elders. Moreover, having these activities be remote  OPENED UP MY WORLD. Finally, my access needs were being met.

So, COVID has been a mixed bag. I’m worried about getting it, especially because of the  potential impacts of Long COVID, but the pandemic also forced structural changes that Disabled  people have been advocating for for years. I just hope those structural changes are here to stay.  With the mask mandates being lifted, it feels like non-Disabled people are going back to their  version of “normal,” while the rest of us are left behind. Please don’t leave us behind.