Does Disabled COVID Shame Matter?

Disabled Buzzkills Nurturing Ourselves Amidst COVID Cynicism & Cultural Amnesia

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Disabled And Here Collection ||

You can’t make an herbal tincture without alcohol, so naturally I purchase a lot of alcohol for my work at balm in gilead.

Generally, and until I can find a better way, I purchase my brown liquor from the discount liquor market in the nearest city—a generous moniker for a town whose highest level of public transportation is a three hour Trailway Bus into Grand Central Station.

Recently, however, I was dropping off some of your orders at the post office, saw a little liquor store, and remembered I needed Everclear. I rushed in, grabbed two bottles that were smaller than what I wanted but also cheaper than I remembered, then headed to the counter.

The old white man behind the counter, who I could safely assume owned the place, saw me but didn’t greet me. I registered this as a red flag, though not an unusual one in a day of Black life. I thought briefly about leaving, but then figured the man was old, I never had to come back, and I didn’t want to travel all over that day. I decided to wait.

While I picked at a fishbowl of Fireball nips, I noticed the walls of the claustrophobic shop were electric blue. Much of my concentration centered on fitting my body between the counter, which came to the middle of my chest, and the metal and glass shelves that towered behind me. I’m clumsy as well as pear shaped, so it was an intimidating spot.

After several minutes of tense muscle control, the man behind the counter finally spoke to me. “Are you sick?” He pointed at his unmasked lips to signify my own masked face. “No,” I pushed the bottles and nip towards him without meeting his gaze. “Then why don’t you take that thing off?”

“I have lupus,” I volunteered, though it was no longer completely true. All I wanted to do was to get this complete stranger off my back without incident, spare myself an additional trip, go home to play The Sims, and make my fresh herb tinctures the next day in peace. He rang me up wordlessly, finally shoving the card scanner toward me to pay.

When I got back to my car, I was like “since when is it normal to ask strangers for their health information,” and also “why did I feel like I needed to give that stranger my health information?”

This exchange and those like it cause me to feel a great amount of shame, not for masking itself, but for needing to mask long after others have abandoned the practice, and by virtue, the burden of caring for people like me.

Increasingly I find that the mere existence of a resentful, still masking disabled public leads ableds and those who wish they were abled to lament that they feel “shamed.”

Truth be told, I’m about fucking tired of it. Because why am I at a my rheumatologist appointment and the medical desk operator asks me, a clearly immunosuppressed person by virtue of DUH the money I’m shelling out for this visit, “why do you still wear a mask?”

And I’m thinking to myself “mutherfucka where did the sense god gave you go?” But again, I smile and say “I have lupus,” though again, I now have a rare disease called, blandly, mixed connective tissue disorder, and is more or less like the lupus I was diagnosed with for most of my life, but rids me of the constant inquests by doctors and “friends” as to how I’m still alive.

Does my shame at these ableist interactions, born totally of the public’s unwillingness to tolerate masking and maskers, matter at all? When did disabled shame become politically irrelevant?

Seattle Museum of Art

Kidneys, The Kalûnga Line, and Shame

In herbalism school, I learned that in TCM shame is sometimes considered an emotion connected with the kidneys. The kidneys are one of the first organs that form under this taxonomy. This jives with my own religious understandings.

Crossing the Kalûnga line is an experience of water; of course the place that controls the flow of water into and out of the body would need to form first energetically.

The kidneys are associated with our identities and are called “the seat of fear” in TCM. This also makes sense to me in my own practice, while the practice of TCM is not my own. As someone who works with the dead, and helps people in their transition from life to death, there’s a change in status, a change in identity.

So when we struggle with our earthly feelings of shame, particularly shame in our identities, I can see how herbs that protect the kidneys and help us work through our feelings of fear are indicated.

Nettles are where I go first, naturally. They’re protective from people’s bullshit, keep assholes away from you, reduce inflammation, and may help abate kidney stones. They’re a nervine tonic too.

(If you’re looking to learn more about nervines, I’m having a big sale through March 31st. Find more info here.)

Cynical Economies of Feeling

When these anti-masker encounters occur, I volunteer this information because I’m worried that if I don’t the situation will escalate—I’m not just ashamed, I’m afraid. I’ve never been treated particularly well in public, and I am acutely, painfully aware of the lengths that strange me will go to put me in my place—especially in front of other men.

I’m often cast as a confrontational person; this is only true intellectually. I don’t shy away from conflict if I believe it to be necessary or earned. Yet I also try to get through the world without much notice. After all, I’ve had a man, a stranger, choke me in a bodega while grown men watched and presumably liberal shoppers continued stuffing their baskets with organic coconut milk, halva, and overpriced local eggs. I’ve was raped at my job, and I only got twenty dollars as a mea culpa when the pregnant bartender demanded it.

Believe me when I say it’s not just shame that runs through me like a jolt of electricity during these exchanges. However, shame is certainly present.

Some of the shame is the regular shame of living in a sick/disabled body, like the shame I felt about my cane, or about my chronic limp, or about my budding vitiligo or discoid spots. But the pandemic brought a new kind of shame, and even many people in the disabled community weren’t ready to face it.

“Leadership of the Most Impacted” is the second principle of the Ten Principles of Disability Justice, in which Patty quotes Aurora Levins Morales: “we are led by those who most know these systems.” It’s a document I spent all but one of the last five years posting, reposting, providing links and access to, remixing into carousels, captions, and blogs, sharing, unsharing, and quoting as the Comms Director at Sins Invalid.

For most of my time working with various organizations under the heading of disability justice, people with chronic illnesses simply weren’t part of the populations most impacted by ableism. I have an intense visibility wound, in large part for the reasons stated above, so I’ve never been super interested in leading. I’m really more of a second-in-command type guy.

Then, the pandemic made it clear that though this often wasn’t the case, chronically ill people would come under immense scrutiny, and eventually be pushed out of public life. With a few exceptions, disability organizations that had (rightly) focused elsewhere were unable to center people with illnesses onto death; many still struggle with this. Many, many people I know have died from COVID, or the chaos that COVID wrought.

I spent a solid year completely alone from lockdown until March of 2021. I’ve continued masking until this day. I’ve lost friends and gone no contact with family members. The vibrant, active life I lived before the pandemic has ceased to exist.

And I sorely regret to inform you that it never had to be so. Like, my life would genuinely be so much fuller if queer and trans events at least posed the option of masking in doors, and provided masks to those willing to don them. I know, because my husband and I uprooted our lives and moved to a place where it’s possible to find such events every now and then.

There is no world in which a leftist is more concerned about people causing harm to an entire community’s feeling of shame—not shame about who they are, which mind you is the shame no one deserves to feel, but the the fully justified and earned shame about your actions—than the isolation of an entire group of very marginalized people. That’s fucked up. It’s conservative, it’s cynical, and I won’t fucking budge on that.

What’s missed in all this avoidance is that there’s a hierarchy of shame in this. At the top is the shame of a fictional, powerless other, who is being shamed by big mean rich white maskers who have no empathy for them which is way worse than the experiences and identities that have led to the disempowerment the deployer fetishizes. I wrote about this last week regarding that article some of yous liked despite the politics you feign, I mean…espouse.

Under this fictional, politically expedient other who is never the one making the claim, is the person who has long ago stopped masking, if they ever did, because it was uncomfortable and not fun, and unchic and who cares, but who is intellectual enough to lodge a rebuttal so they can get back to their lives as a fully automated champagne socialist or whatever the fuck they’re telling themselves they are until someone clones Obama so they can vote for him a third time.

Then over in the garbage, or the grave, are me and people like me. But it kind of makes sense. If shame is what you fear, it’s best not to mask. Then you can create a world where the people who may hurt your precious fucking fee-fees are pushed out of public life entirely, or better yet, die young enough that they can move to the top of the hierarchy of shame, because they’re dead and you can use them as an example.