On Disabled Grief and COVID
Content warnings for infertility, ableism, COVID-19
One of the ugliest things about grief that doesn’t get talked about enough is the rampant, beastly envy that wears trauma’s face. When I was told — incidentally and callously at the exact same time that physical disability would be taking a wrecking ball to my life — that biological children would be a statistical improbability, I hated new mothers. Through no fault of their own, I hated their happiness, the frippery of their heteronormative baby showers, their frivolous little gender reveal parties, the thoughtlessness with which people made maternity and motherhood the flashpoint of all youthful uterus-bearing.
Obviously, this reflects poorly on me. But this is not at all uncommon. If you pop infertility grief and jealousy into google, or pregnancy jealousy, or any combination of search terms, you get hit after hit of articles and resources. These are feelings a lot of uterus-havers (note I don’t say women- there’s a reason for that) go through when pregnancy is not smooth sailing, or a possibility, or sometimes even something we want. If that last bit sounds weird, well…that’s the human brain. Sometimes the very act of closing a door makes what ifs pop up, and you grieve anyway. And people get this one, because they understand the hole not having that experience leaves.
There are lots of forms of grief. The obvious one is losing a loved one, or a beloved way of life. Less often discussed is the grief that comes along with learning the ins and outs of a new disability or illness. It’s loaded. Society doesn’t love a disabled person who complains. They love us if we OVERCOME or INSPIRE or QUIETLY COUGH IN THE CORNER AND PASS AWAY BEAUTIFULLY TO GIVE AN ABLED PERSON A SENSE OF PURPOSE IN THE SECOND ACT OF A MOVIE. Grappling with the ramifications and grieving the old status quo? Screw that. Get in your bedroom and sit there quietly till you die so we can do memorial 5ks for you and put gone but never forgotten decals on our cars.
And that last bit makes this so much worse. Grief is a communal thing. Elephants mourn together. Funerals are for the living. And our families and friends listen to us and go mmhmm that sucks hey, listen, talking about this all the time is getting to be a bit of a drag. “All the time” is usually “at all”, by the way. My coworkers have kind of an “oh, here we go” face they make if I bring up accessibility during meetings. And I’m on equity, diversity, and inclusion teams specifically because of my disability advocacy. That’s what I’m there for!
Why is this such an allergic reaction for people? Talking about any sort of grief or negative impact surrounding disability is a reminder of the tenuous nature of health. People don’t like to hear that they are one car crash away or one CAT scan from being me. In fact, by the end of their lives, they’re more likely than not to join me, and likelier during our COVID time period than ever. By sticking their fingers in their ears and comforting themselves with their inspiration porn, this gets to be something that happens at a remove to somebody else. To a small number of people, so why fuss about it?
It’s not a small number. 25% of the overall population. 15% of the workforce. And right now, a chunk of the population that may or may not have considered themselves disabled is dealing with grief in a big way. There aren’t numbers for certain, but it’s estimated that 10 million people in the US are immunocompromised. Scientists are finding that COVID vaccines may not be as effective for those individuals. Right now, the CDC guidelines state simply that immunocompromised people should “continue to take full precautions” even as the rest of the country opens up.
Full precautions, meaning the gamut from full isolation to bubbling to masking. For me personally, that means wearing a mask at work and not going places that aren’t absolutely necessary. That means no grocery shopping, no leisure trips, nothing. I have four to six people, depending on how cautious they’re being or how much they care to stop by, that can come to my house. I can’t go to theirs. I can’t eat in a restaurant. I seriously considered quitting my job and eventually decided it was worth risking my life. Because we can’t afford for me not to. Isn’t that fun?
Meanwhile, the volatile delta and delta plus variants are spreading. Preliminary information seems to suggest they break through vaccine protection at a higher rate, meaning high risk individuals who were counting on the vaccine’s protection may need to consider the same measures that immunocompromised people are taking.
Not going to lie, it feels like March 2020 all over again, except only some of us are going through it this time. A sampling of my social media feeds:
“I am never wearing a mask again!”
“First cocktail. Feels soooooo good.”
“Day 425 without seeing anyone but my mom. My kid is worth it.”
“Does anyone want to go to Chateau Ste. Michelle with me???”
[pictures taken at Disneyland]
One of these things is not like the others…
I’m sorry, but I hate you right now. I hate your Disneyland pictures. I hate your cocktail. I hate your concert series. I hate your insistence that you wouldn’t bother protecting me should we need to come face to face. And before you go “well, I didn’t mean…” Of course you didn’t. You didn’t think about me or about Day 425’s kid. You didn’t think about the delta variant. Because you’re vaccinated, and you read some press release that lulled you into a false sense of security about taking your mask off. You don’t want to think about us, because then you’d need to consider the precarious nature of your own health. Sit at home and take full precautions (if you even can), immunocompromised people. If you die, we’ll put your name on the back of a Ford Explorer in Monotype Corsiva.
But people don’t care to understand this grief, because it’s not babies. It’s just my ability to participate in society, have a social life, make money, foster my writing career, do…anything. They don’t want to hear about it, because it’s too close to their own health.
I’m coming to realize that the envy is really a mutation of anger, which is, in fact, a natural stage of grief. But it grows out of the inability to mutually mourn, to communally express shock and anger and depression and denial and acceptance. That’s why 2020 was easier to parse for me and a lot of others like me. We were fucked up with grief over losing our normal, but we were experiencing it together.
Now we’re being Jane Eyred again. Get back in the attic. The rest of us want to wear hoop skirts and play croquet and this is just a drag.
Yeah. It is, isn’t it. Imagine being me. I know you can. You just don’t want to.
Image attribution Creative Commons. Bertram Mackennal, public domain.