Organizing & Movement Building Archives - Oregon COVID Storytelling Project

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.

As an immune compromised disabled person, the possibility of getting COVID-19 was terrifying. My partner is a mechanic and was considered to be an essential worker who could not work from home, so knowing he was going in and out of other people’s vehicles everyday was also very concerning for me throughout the process. Add to that the shortages of hand sanitizer, antibacterial hand soap, and various cleaning products, I often worried he wasn’t able to sanitize things well enough as he went in and out of stranger’s cars. I was constantly afraid he would get COVID-19 and pass it to me, knowing that if I got it I could end up hospitalized or dead. I began hearing stories about disabled folks in hospitals who were denied adequate medical care, and due to lack of beds and ventilators they were being left in hallways to die, as medical staff were making decisions about who lives and who dies. I was devastated to see how people with disabilities were being treated like they were insignificant and didn’t deserve to live, and I feared the worst could happen to me too.

There has been such rampant misinformation in the past several years, it has really been shocking to see how a public health crisis became such a politicized issue for so many people. It brought out some of the most selfish behaviors in a lot of people, as if they were completely oblivious to the fact that we live in a world where we should be helping support the most vulnerable people, and instead were labeling the elderly and disabled people as being disposable. It was appalling to witness so many anti-vaxxers and anti-maskers just not even care about how their actions (or lack thereof) affect so many others. The fact that so many people were saying it was their choice to not wear masks or not get vaccinated completely ignored how those choices could affect the lives of others.

Even now, I still have to deal with family members questioning my choice to wear masks and get vaccinated, by telling me “don’t believe the covid hoax” or that I am just “giving into fear.” My own mother came to visit me last year and I had insisted she needed to wear a mask on the plane even though the mask requirement had been lifted. When she was here she made a comment about people wearing masks in the airport and I said to her “but you were wearing a mask too, right?” and she responded “no, why would I do that?” I reminded her she had promised me she would and she just said “oops, I forgot.” She also questioned my insistence that she wear one in the grocery store while she was visiting, to which I said “because I am immunocompromised” and she responded, “yeah, but I’m not.” It’s been really heartbreaking at times to see so much disregard for those of us at higher risk and to see so many people just not care or understand how their choice to not wear masks can affect us.

I’ve struggled to find ways to interact in person with others while not knowing who to believe about how safe they actually are and trying to navigate risk factors on a continual basis. This was already a concern of mine for years regarding the cold and flu, but COVID-19 just brought it to a whole new level. After about a year of isolation where the only person I saw in person was my partner who I live with, I tried to find the courage to safely meet up with friends again. I ended up having multiple times where the friend I was supposed to meet with ended up canceling because they contracted COVID-19. It left me feeling like there was no point in even trying anymore and I just needed to stay inside my safe bubble.

In addition to the isolation I was feeling from the pandemic, there were so many political and social justice movements happening at once. I had family members and friends who were

following QAnon and trying to push their beliefs on me, while I was just fighting to survive. During the summer of 2020, Portland became an epicenter for white supremacists to gather during the Black Lives Matter protests. We heard helicopters and gunshots on a nightly basis, and I had numerous friends who were targeted by the Proud Boys due to their race. I even heard air raid sirens in the middle of the night a few times after Trump sent in the National Guard to take down the protestors. Then the Oregon wildfires in the summer of 2020 made it feel like I was living a post-apocalyptic nightmare. I felt completely overwhelmed that there was so much happening in the world out of my control. I hit a deep depression, consumed by my feelings of helplessness.

I found the best way to work through that pain was by throwing myself into pursuits of racial and disability justice movements. I may not be able to safely endure the front lines at protests, but I knew I could offer my skills in virtual spaces to help bring others together through these social justice movements.

In the late spring of 2020, I volunteered to help set up an online Facebook group to go along with the Crip Camp Virtual experience (a 16 week seminar focused on Disability Justice). I thought maybe a few dozen or so local Portlanders would be interested in joining a discussion group, but before I knew it the space was shared with the organizers of the event and they began promoting it as the community led FB group for people to join. Within a matter of weeks we had over 4,000 members from all over the world, and recruited an admin and moderator team of about 20 people. We then created 3 separate groups so that disabled folks could safely share their thoughts and feelings with one another, allies could have their own space, and then our moderator team had their own group to work through creating group rules together and also deal with problematic issues as they came up.

After Crip Camp Virtual finished, I was asked to step up as administrator for a Portland based Disability Justice FB group, and by the following summer I applied to be on the board of a new Disability Justice nonprofit. There I became the project manager of a virtual zoom space called “Crip Create” that is rooted in the principles of Disability Justice. This space helps bring together disabled folks from all over the world to be in community with one another for coworking, body doubling, and socialization. It has been incredibly valuable to help those of us still living in isolation to have a sense of comradery and validation for the experiences we have due to the numerous oppressions we face as disabled and multiply marginalized individuals (the majority of the people who come are also LGBTQIA+ and/or BIPOC). That space has been an actual life saver for me and so many others, and I am so grateful that I have had the opportunity to help run and organize that space for so long.

I am beyond grateful for the opportunities that I have found to engage with my communities virtually in pursuit of Disability Justice. I have found myself much busier and more fulfilled being able to participate in so many amazing virtual events and give back to my community in this way. While many able-bodied folks complained about how awful it was to be stuck at home during the lockdowns, for me that was the life I had already known. I was tremendously grateful to see so many spaces shift to allow for virtual participation and find new ways to engage with the community. For me, that is a gift that I found through the pandemic. I hope that in the future organizers can continue to make events and community spaces more accessible to everyone by also offering virtual opportunities for engagement.

Witnessing the horrors of the pandemic was incredibly overwhelming and terrifying in numerous ways. I struggled a lot with being frozen in fear and not knowing what I could do to help. In contrast to my anger about all of the selfishness that many people were exhibiting, I found hope in seeing all of the mutual aid happening around me, and I wondered how I (given my limited resources and physical abilities) could give back too. I tried to move my way through the dread and outrage by focusing on the love and generosity I saw. There was a lot of ugly but there was also a lot of beauty. I took this opportunity as a call to action for me to put my organizational skills to work, fighting against systemic injustice and oppression by creating a deeper connection with my community and others.

story by rb

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