Social Distancing and Crip Survival: A Disability Centered Response to COVID-19

Image Description: An illustration of a short-haired person with blue and green skin wearing a pink half-shirt and long pink skirt, seated in a green and orange wheelchair. Handwritten text reads : “Justice means a disability centered response to COVID-19.” Art by Rafi Darrow.

Sins Invalid staff members are figuring out how to adapt our organizational practices to support community members, particularly interns, artists, advisors and mentors to live through the new Coronavirus pandemic.  As for staff, we work virtually until further notice. We check in with each other to make sure our needs are met, and offer people food and access to rides when they need them. Below are more ways folks at Sins are navigating this moment in history.

In some ways, it isn’t so different from how many of us live our lives every day as crips, with long stretches of time at home, limited access to community or touch or social engagement, engaging in mutual aid, sharing meds & home remedies. Many of us who are immunocompromised/suppressed or chemically injured have had to think about how many people we will encounter on any given day, what that will expose us to, and how it could impact our health. It’s an irony that the whole world is talking about and problem solving with us now. It’s painful that able bodied/minded people evidence their ableist privilege with frustration that air travel is inaccessible, that their schedules are impacted by others’ schedules, that they can’t do their normal social routines… Welcome to our world!

There are a lot of online resources helping people network on local and national levels. Here is a list of mutual aid projects. Our friends at the Disability Justice Culture Club have been doing a lot of work in Northern California’s East Bay to make sure disabled people’s needs are being met during this “shelter in place” time. If you are a person with resources to offer, please complete This Disability Ally Form.  If you are a disabled person with unmet needs, please complete This East Bay Disabled Folks COVID19 Support Request Form.  Disability Justice Culture Club also gratefully accepts donations via Venmo at @DJCultureClub. Funds will go to support various types of mutual aid organizing. We will list additional resources at the bottom of this blog. 

We’d love to hear how you are being impacted and what you’re doing to stay safe and protect those around you. 

Image Description: A blue background with a pattern of delicate line-drawings of plants, overlaid with orange blocks with blue text that reads: “Social Distancing is Disability Justice.” Art by Rafi Darrow.

Nomy:

I live in Olympia, very close to the largest outbreak of COVID19 in the US. At first when coronavirus was making itself known locally as an issue, I was concerned about making sure that events I was hosting wouldn’t end up exposing people, and cancelled a few things. I was careful to wash my hands and disinfect with alcohol wipes when coming home or when visiting a friend who is immunocompromised. At a certain point, after a number of conversations with my partner, I realized that we need to be more concerned about my partner’s health as an immunocompromised person, and we decided to limit our interaction and exposure to anyone outside our household. As disabled people there are lots of ways this already feels familiar; we both spend a lot of time in bed, and we also have a lot of experience with planning survival from home because my partner recently spent nine months on house arrest. We still see a couple people, we have two support people who come into our home, and we are taking precautions as much as possible, lots of handwashing, lots of immune support. A person from our community volunteered to do our grocery shopping for us, which was a really sweet experience. We have a pretty big network here in town and have been able to organize to help meet our own and other peoples’ needs. Lisa made a big batch of chicken soup and we’ve shared it with a few people, as well as some motherwort tincture that I made for anxiety. We went out gathering nettles which are great for immune support and allergies. We’re lucky enough to live in a place where you can go outside and keep plenty of distance from people, so we’ve gone for a couple walks in the neighborhood, we see people gardening and run into friends at the dog park. A friend dropped off a big box of herbal medicine that she made herself, include a lot of lung support. I spend hours on the phone or on zoom with my disabled friends. We know a few people who are pretty sick and are trying to make sure everyone’s needs are met while also protecting ourselves as much as possible. We are still at the beginning of this time of (for now) voluntary quarantine, so people are feeling excited to help, we will see how it goes as people get more scared and/or burned out. 

Sofia:

I live in the Bay Area of California. I have a compromised immune system. I decided to temporarily live with my family while an active “shelter in-place” order is in place. I realized that if I do get COVID19, I wouldn’t be able to take care of myself in my current living situation, as I do not have any PCAs. My parents can help me with errands like groceries, prescription refills, etc. This will also ease the congestion on grocery and food delivery apps. I’d rather save the slot I would be taking up in the delivery apps for someone who does not have the option to ask family for help. I am protecting myself by staying home and asking my family to practice social distancing and to stay home as much as possible.  I am personally struggling without physical touch or affection, yet also recognize that many crips go vast stretches of time with this type of hunger. I am grateful for safe housing, health insurance, and support from family. 

People across the United States are frustrated by inadequate access to rapid and accurate testing for COVID19 due to bureaucratic bottlenecks at the CDC. I have Lyme disease. People with Lyme know all too well how untrustworthy the CDC is regarding their testing guidelines for infectious diseases. We have lived with the reality that it is notoriously difficult to acquire a Lyme disease test for decades. The anger we have felt for so long is now being felt by millions of others. My heart hurts that the CDC is yet again failing those it is meant to protect. I am so anxious for what is to come in the next few days, weeks, months.

Patty:

As a 53 year old chair user, a person with “one-third vital lung capacity” who’s had 13 pneumonias, as a person diagnosed with both diabetes and hypertension, and as someone recovering from cancer, I am all too aware of the risk I run.  If I were to develop COVID19, I have no doubt that my cough would be weak, leaving it to chance whether my lungs would fill and bring me to the edge of respiratory failure. And I’m sadly also sure that I am equally at risk that [unconscious] eugenic decisions will be made in overcrowded respiratory units, declaring that, with limited resources, my life is less worth saving than a 35 year old seemingly able bodied person’s life.

And of course all of us can be carriers of the virus, endangering beloveds and their beloveds.  I remember the learning curve people went through with HIV+/AIDS, the disbelief giving way to grief as lives were lost.  Are we on a similar path? Will our staying home have come soon enough to protect those we love, not to mention protect our own soft tissues?

Being on the cusp of Capricorn & Aquarius, I do understand the brass tacks:

  • I do not leave the house, not too different to what I’ve been doing for 5 yrs

  • I quarantine my mail, since the virus can live on a surface for 2 - 3 days

  • I have a lovely  garden. Anyone who wants to visit can sit with me there.

  • When my attendants and partner enter the house, they wash their hands in the sink near the door and leave their jackets in the designated shoe/jacket area

  • I’m having hard conversations.  For example, my partner is a social worker for a county jail, which means exposure risk.  He lives with seven members of his family, and typically splits his time between my house and his, peppered with occasional nights at friends’ houses.  I was uncomfortable with his level of exposure so I had to communicate this, and why, and what are safe choices for me. I’m having similar conversations with personal care attendants as well.  

  • Every 30 min or so my attendants wash or sanitize their hands

  • Two times / day I try to sanitize the doorknobs w/Clorox wipes.  I’m excited to try a recipe of alcohol, glycerin, lavender oil, tea tree oil, rosemary oil, palo santo oil, vitamin E oil, aloe vera gel, and grapefruit seed extract.

Karina:

I will be just fine… It won’t affect me… It’s just going to affect old people... You can only get it from people who are visibly sick… If the Corona virus doesn’t take me out, will you?

These are statements that I have heard or seen all over social media lately. Young adults and teens aren’t taking the necessary precautions to ensure that those around them stay safe. There is a belief that only symptomatic folks can pass on the virus, but a lot of us can be carriers, especially young adults and teens. As a carrier, I can be asymptomatic, and pass on the virus to those around me. 

To ensure those around me are safe I have started some practices to minimize my exposure. I have: 

  • Reduced the number of people I am in contact with to only people I have to see

  • I wash my hands after using ubers, touching doors, or going to places that are heavy foot traffic. 

  • I wear a scarf ( with a filter) whenever I am outside

  • I don’t have physical interactions with anyone

  • I had a conversation with my roommate 

    • Every person he comes in contact with, I come in contact with, and so on. 

    • He is practicing social distancing. 

  • Sanitizing my surfaces everyday 

    • Phones

    • Computers

    • Desk

    • Door knobs

    • Counter tops   

I myself can be a carrier and I am mainly concerned for my beloved who can be highly impacted. I have warned my friends, roommates, housemates, etc about their actions impacting those who I love. 

Your actions don’t just affect you. It’s a global impact because we are facilitating its spread around the world and endanger those around us and who they care about. 

Image Description: A close-up drawing of a person’s face, with green hair and glasses, with the sun shining behind their head. Yellow text reads: “Practice solidarity with disabled folks: Self-isolate and wash your hands.” Art by Rafi Darrow.

Additional Resources:

Skill Sharing

Healing Justice Podcast re-cap of webinar “Coronavirus Preparation for People with Chronic Illness”, hosted by Cranky Queer 

Coronavirus Wisdom from a Social Justice Lens

(Transcript of the podcast.)

Organizing in a time of pandemic, by Larry Kleinman, CAPACES Leadership 

Pod Mapping for Mutual Aid

Half Assed Disabled Prepper  Survival Tips for Preparing for a Coronavirus Quarrantine, by Leah Lakshmi Piepzna-Samarasinha

Fat-Assed Prepper Survival Tips for Preparing for a Coronavirus Quarantine, created by Fat Rose

Public Health Information 

Hesperian Health Guides: Coronavirus factsheet, available in 11 languages 

https://en.hesperian.org/hhg/Coronavirus 

From the California Department of Public Health: COVID-19 Public Health Guidance for Individuals with Access and Functional Needs 

California Department of Public Health 

Mutual Aid 

Database of Localized Resources During Corona Outbreak, organized by RadComms  

COVID-19 Mutual Aid Resources (United States Specific)  

COVID-19 Mutual Aid Fund for LGBTQI+ BIPOC Folks , organized by Amita Swadhin via GoFundMe 

Mini Artist Grants, organized and sponsored by Patreon 

El Cerrito/Richmond Coronavirus Mutual Aid Google Form

Neighbor to Neighbor Coronavirus Support for El Cerrito, Richmond, Albany, No. Berkeley, et. al. Google Sheet 

Seattle Artists Relief Fund

IMMUNE COMPROMISED PEOPLE IN NEED 

Covid-19 Financial Solidarity 

COVID-19 MUTUAL AID & ADVOCACY RESOURCES

 

Cultural and Artistic Work 

wash your hands, by Dori Midnight

in the corona by adrienne maree brown 

What To Do In a Pandemic (Animals) - Full Poster - Poster Art for Social Justice by Ricardo Levins Morales 

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