Virtual Home Building & Rebuilding: Disabled Communities in the COVID-19 Pandemic
I am writing this reflection from government-advised self-isolation, sitting in my one-bedroom apartment in Madison, Wisconsin with no roommates, pets, or partner to hug. It is March 2020, and I, like millions of people all over the world, are hiding in my home due to the global pandemic that is COVID-19, also known as the coronavirus. We’ve all been told to keep 6 feet apart from one another, avoid travel, and move all our work online, if possible. Despite my many good friends that live locally, never has this apartment and city felt less like a home to me. This pandemic and forced self-isolation have compounded my feeling like an “outsider,” living in the wrong place.
In times like these, we realize our community in new ways. Community forms through people sharing the same place, experience, history, or trait. We may not always like everyone in our community or agree with them but we are more powerful together than alone. Due to the general inaccessibility of the social and physical world, the internet has become a space of disability community formation. While the internet has access barriers and ableism, it has also allowed for disabled people to connect in ways that were previously never possible. For the first time, for example, I could share the ableism I’ve experienced at doctor’s offices and no one called me a liar or defended the doctor. I was believed. Even more, we’ve told one another more about our medical histories than we’ve told our families and doctors sometimes. There is no judgement. In one way, we share these personal details because in one way, it’s the only time we’ve been able to speak freely without fear of exclusion, pity, or stigma.
By engaging with disabled people on Facebook and Twitter, I’ve made connections strong enough that together we’ve shared our utmost secrets, offered financial support without ever being asked, wrote and created, planned international disability justice campaigns, cried, laughed, and never let one another forget our worth. These relationships have sustained me when I could not do so myself; this is the utmost sign of interdependence.
Communities support you, but homes help you grow, without pressure or growing per some artificial timeline of growth. If a place is not nourishing me and helping me improve at my own rate, it is not home. I feel at home when I am supported, I am visible, and I am held accountable. Hence, I know I am home with the online disability community because they have made me a better, kinder person and all I want is to support them in their projects, goals, and happiness.
There’s a running joke on Twitter among disabled people that we send the same $20 of support back and forth to one another. While this is a joke, it’s telling of how we sustain each other. It’s not the amount that matters, it’s the very act of sharing what you’ve got. I’ve given money to people when I was down and out myself, waiting on a check, or facing high medical bills. I’m not bragging, I’m explaining that home is also something you must nourish as well, keeping it together and warm.
The COVID-19 pandemic has allowed the online disability community to demonstrate its seemingly boundless collective capacity to care, listen, and inform. Unsurprisingly, disabled people, as well as many adjacent communities (people of color, trans, and queer folks), have been at the frontlines of coordinating COVID-19 mutual aid groups all over the world. Amid this pandemic, more than I’ve ever in my life, I see how much nondisabled people need the disabled community. We are experts when it comes to isolation and pandemics. We know how to advocate our legal rights as patients, navigate Medicaid and other private insurance claims, and stock up on supplies for weeks. We know how to live vulnerably, which is to live together. We know all this because for many of us, it’s our daily reality.
In a way, all the COVID-19 daily journals and live-tweeted trips to the ER are more than cathartic, they are educational. This pandemic may make feel like everyone is making up the rules as they go along, and it will remain this way unless we take a note from disabled people and share our stories. I’ll let the CDC and WHO handle the official medical knowledge, but when it comes to understanding how ableism, ageism, racism, and classism are worsening this pandemic, I’m going to start by listening to disabled people and our allies.
Am I scared of getting sick? Every single day. Am I more scared that the hospital won’t let me in or refuse me testing? Every single second. This is the reality of the U.S. medical system. But, at the same time, I find myself just as worried about people I have never met, my disabled friends that I’ve made through social media. Sometimes I let my mind loose too much and I wonder if we’re all going to survive. Then, I shut off my computer, put down my phone, and press a cold towel to my face, waiting for the panic to stop. Home keeps me grounded.
Something understated about this pandemic is how many people will become disabled because of COVID-19. This virus is unmapped territory, and so far, the effects it has on some people’s respiratory systems may develop into long-term breathing conditions. They too will need new forms of support, and when that time comes, I hope they know that they have a home with us.
I unconsciously write using “us,” “we,” and “our” to represent how this community is a part of me; you never really leave home, it’s carried within you. We must remember this collectivity as we make it through this crisis. The truth of the COVID-19 pandemic is that many people have and are going to die. Many of these people will be elderly, immunocompromised, disabled, and chronically ill. Nothing can supplement or heal this loss. What will survive is the sense of community and home that disabled people foster among ourselves. We will mourn as we rebuild and our mourning will help us imagine how we rebuild, rebuilding in a way that honors them by combatting the ableism, neglect, and cutthroat levels of capitalism that have excelled this pandemic. That’s the other thing about home, it never forgets you and we never forget it, and all the people that made it a home to begin to with.
Amy Gaeta is an activist and Ph.D. candidate in the Literary Studies and Visual Cultures (doctoral minor) programs at the University of Wisconsin-Madison. Her work uses feminist technoscience and disability studies to theorize the relationship between technology, virtuality, and the category of the human in the 21st century. Amy uses her academic training in her efforts to promote social justice and mend the gap between activism and academia.
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