Pronouns: non binary and genderqueer, uses they/she/he pronouns (used interchangeably)
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The spread of COVID-19 and monkeypox have changed all of our lives in innumerable ways, and as per usual, marginalized groups have been affected the most. For years disabled people (especially those who are multi-marginalized) have been fighting for a more streamlined and accessible healthcare system. Disabled advocates predicted the unreliability of hospitals and the deaths that would inevitably follow during a public health emergency like a pandemic. Before the COVID-19 and monkeypox pandemic, many people with chronic illnesses or disabilities experienced hospitals with no beds, long wait times at doctors appointments. Societal neglect and eugenicist ideologies were always an issue, but these things were exacerbated and aggravated by the pandemic. Capitalism and exploitative businesses have been prioritized over the needs of the most vulnerable- children, the disabled, and the elderly have not been protected because (apparently) we have to continue competing for resources no matter who dies or becomes disabled from viruses. Disabled and chronically ill folks as a community have been doing our best to stay safe, wear masks, and to vaccinate when possible. Shielding from a virus (that the government has not tried to contain) for 2 ½ years is a huge feat. I’m incredibly proud of us! We have become sanctuaries for each other in the midst of trauma, because we know we are worthy of safety. If we stand together, we can continue this high standard of community care and protection.
The most tried and true ways to avoid spreading these illnesses include social distancing, wearing multiple masks, and undergoing isolation as much as possible. Of course this is not possible for everyone, particularly those who live with others and those who work outside of their homes. I experienced this in 2021 when I contracted coronavirus from family members who ignored how transmissible COVID-19 is. I was already disabled but I now have multiple post-viral illnesses due to their behavior. I know several disabled people who have experienced similar situations where they had limited control. This is why it’s crucial to be a community that protects each other. If I am protecting myself but those around me are not willing to also protect me, I am unsafe. It is exceedingly important to be surrounded by those who have our best interest at heart. Family and friends who truly love us are going to care about and prioritize our health- caring about our health is the bare minimum. Again, this is not always accessible, as the majority of our community cannot live alone (because of finances or care needs), so the responsibility falls to those around us to do their part in maintaining our safety. When they keep us safe, they are keeping themselves safe too! Abled people are not immune to premature death, post-viral illness, nor to losing pay at work when they get sick. Sharing information online about the effects of coronavirus has made me feel less helpless, because no matter what happens to me, I know that I warned my friends and family about the risks these viruses bring. Safety from communicable disease is a human right, and you are not wrong to desire community care.
No matter how discouraged I become, I have to remind myself that it is possible to continue enjoying life in spite of a pandemic. Being away from loved ones and the places we used to go can definitely take a toll on your mental health. We are not meant to be alone for months or years on end. Nonetheless, the disabled community will forever take care of each other.
With social-distancing, we can still spend time with others- taking walks or wheelchair rides together (if you are able) is a great way to get out of the house and to invite some serotonin. Personally I am a big fan of having people over (especially outside) to sit outside six feet apart and talk and have yummy food. You can also have guests quarantine and/or take coronavirus tests before seeing you; this is a boundary I am starting to enforce because it makes me feel the safest. Phone calls and video chats with loved ones are an incredible tool as well- hearing the voice of a friend can be so healing! Texts and voice messages are what I rely on when I do not feel well enough for a call.
When you cannot spend time with others in person, techniques like self-holding, putting your hand over your heart, deep pressure therapy, tapping acupressure points on your body, and diaphragmatic breathing can help us to reconnect with ourselves and feel less alone. These practices ease stress but they also help us learn to listen to our bodies. It is very common to cope with stress, illness, and trauma by disconnecting mentally and emotionally from our bodies. Emotions (especially if it does not feel safe to process them) can become trapped in the muscles and fascia. However, strategies like these can help us to alleviate the strain on our bodies and minds, and to manage loneliness while in quarantine.
Other ways to avoid contracting or spreading the viruses include frequent hand washing, and wearing gloves to shop and to open doors. Gloves are vital to manual wheelchair users like myself who want to keep our hands clean outside of the house. Don't forget to wash your clothes after purchase (especially when thrift shopping) as monkeypox can be spread through contaminated fabrics and other surfaces. Disinfecting your mobility devices and other belongings after outings is another great way to cover your bases and get rid of any lingering germs.
It is not just “okay” to make ourselves a priority- it is vital to our health and survival. Your health is valuable even if it is not protected by the world around you. Harm reduction in a stubborn, unruly double pandemic is worth it- we deserve to be here and to thrive just like everyone else. Disability rights advocate Mary Fashik said it best: “After the past 18 months, the disabled/chronically ill community [has] every right to feel rage. Rage over carelessness, selfishness, and disregard for human life displayed by non-disabled folks. They also have the right to feel every other emotion, especially happiness.” We have been through a lot as a community because of the viruses. Yet amid the righteous, justified anger and frustration, we can find peace when we continue to search for it. Loving life during a pandemic is not easy for the marginalized- we cannot self-care our way out of systematic oppression. But being curious about what’s coming next is enough. Our community has survived so much and we will continue to survive!”