Originally published in the San Francisco Chronicle, 8/7/22
Have you ever had FOMO so bad you could taste it? When the sci-fi film “Everything Everywhere All At Once” came out in March, all my writer friends raved about it. My corner of the science fiction writing world hailed it as one of the best movies of all time, and it was all anyone could talk about. It was the conversation happening in my industry. Before the pandemic, I would’ve gone to see a new movie in theaters. In the early pandemic, it would’ve been on a streaming service, and I could’ve seen it safely at home. But now, with mask mandates gone and everything back in theaters, I can no longer see new releases and be part of the conversation.
I also still can’t go get a haircut, go to a dentist or go on my honeymoon.
During the pandemic, I’ve had to hunker down. I’ve been extra cautious not to expose myself to the coronavirus because I’m high-risk: I have myalgic encephalomyelitis (sometimes called ME/CFS or chronic fatigue syndrome), a neuro-immune disease that makes it much more dangerous for me if I get COVID-19.
As we’ve collectively “moved on” from the pandemic, we’ve done away with common-sense precautions like masking in indoor places (especially on public transit!), we’ve ended good community health practices like contact tracing and government-paid testing, and we have just decided that we’re done, the pandemic is over.
Only the sad and irrefutable truth is that it’s not over. We’re on our fourth and fifth omicron sub-variants, each of which has been about 20% more transmissible than the variants that came before them, which in turn were about 20% more transmissible than the variants before them and so on. We’ve changed our Centers for Disease Control and Prevention tracking map to only count transmission as “high” when there’s a risk of hospitals running over capacity, even though the rate of actual transmission is higher than it ever was. We’ve decided we’re OK with COVID ripping through the population more-or-less unchecked, since we know breakthrough infections are not only possible, but common.
People are still dying of COVID and even more people are getting long COVID (which we’re seeing develop into myalgic encephalomyelitis for many long haulers, and trust me, you don’t want it). The CDC and Food and Drug Administration have mostly abdicated their responsibility to prevent infections, focusing only on serious illness and death, while ignoring long COVID and the impact of the virus on disabled people.
And, of course, the more people get COVID-19, the more people are disabled by long COVID, which can also make them high risk, and the problem just compounds.
But even for high-risk people like me who haven’t gotten the virus, we’ve just become more disabled as a result of these societal practices.
There’s a model of disability that says that your limitations are partially based on what you inherently can and can’t do, and partially based on the accommodations society makes for you.
So while I could fully participate in, say, conferences before the pandemic (I could just rent a scooter to get around, an easy accommodation), and at the beginning of the pandemic when everything went virtual (I could participate from my couch), this is no longer the case. I am more disabled, as in, less able to do things, because society has decided that protecting people like me doesn’t matter.
I am not able to physically go to my field’s largest conference (where I’m meant to be a speaker) in September because the safety precautions are just not there, despite conference organizers doing their best. In order to attend, I would need to go on two flights where, even if I were masked, I’d be trapped in a small metal tube with no air circulation for significant periods of time surrounded by unmasked people. (Air circulation on planes doesn’t start until the flight is in the air, and with the current mess of canceled and rescheduled flights, people wind up packed together in unventilated planes on the ground for hours at a time. Not to mention that folks get trapped in airports waiting for delayed flights as well, also surrounded by unmasked crowds in an indoor setting.)
I would need to go to a hotel that doesn’t require its staff to wear masks, or it doesn’t have reasonable air circulation. And I would need to go to a conference center where people are expected to eat indoors in groups, in a building full of other conferences and gatherings that may not have masking regulations as good as mine.
This isn’t new. In April, I was supposed to go see my family, whom I hadn’t seen in a year, for Passover. Three days before I was supposed to fly out, I changed flights so that even the return trip would be within the airline mask mandate timing. When my mother-in-law got off her flight the next day, she told me that even though the mandate was in place, very few people were following it and nobody was enforcing it, and she felt uncomfortable. I canceled my trip at the last minute, and it was a good thing I did, because a U.S. district judge threw out the mask mandate on the day I was meant to fly home. I heard horror stories of people ripping off masks mid-flight and of people who expected to have an extra layer of protection suddenly trapped in a risky situation they didn’t consent to.
I’m fortunate that, for many things, there are some alternatives. I can go to the virtual component of my conference, even though that will be just a tiny sliver of the overall experience. As for Passover, my in-laws put a laptop that had me on Zoom on the table so I could participate from afar. And, yes, it was a little awkward being the only remote person.
But there aren’t alternatives for everything. Please consider that as you want to go back to your pre-pandemic life, so do disabled folks like me. Just as you want more socialization for your mental health, so do disabled folks like me.
Society has decided that people like me just aren’t worth accommodating, but we can be and do better.
If you’re in charge of an event, a workplace or an institution, please include common-sense COVID precautions. Ask folks to be masked, especially indoors. Make sure there’s great air circulation, or even better, hold your event outdoors. Ask folks to test before they show up. You won’t just be making it more accessible for folks like me — you’ll be making it safer for everyone.
Have you ever had FOMO so bad you could taste it? When the sci-fi film “Everything Everywhere All At Once” came out in March, all my writer friends raved about it. My corner of the science fiction writing world hailed it as one of the best movies of all time, and it was all anyone could talk about. It was the conversation happening in my industry. Before the pandemic, I would’ve gone to see a new movie in theaters. In the early pandemic, it would’ve been on a streaming service, and I could’ve seen it safely at home. But now, with mask mandates gone and everything back in theaters, I can no longer see new releases and be part of the conversation.
I also still can’t go get a haircut, go to a dentist or go on my honeymoon.
During the pandemic, I’ve had to hunker down. I’ve been extra cautious not to expose myself to the coronavirus because I’m high-risk: I have myalgic encephalomyelitis (sometimes called ME/CFS or chronic fatigue syndrome), a neuro-immune disease that makes it much more dangerous for me if I get COVID-19.
As we’ve collectively “moved on” from the pandemic, we’ve done away with common-sense precautions like masking in indoor places (especially on public transit!), we’ve ended good community health practices like contact tracing and government-paid testing, and we have just decided that we’re done, the pandemic is over.
Only the sad and irrefutable truth is that it’s not over. We’re on our fourth and fifth omicron sub-variants, each of which has been about 20% more transmissible than the variants that came before them, which in turn were about 20% more transmissible than the variants before them and so on. We’ve changed our Centers for Disease Control and Prevention tracking map to only count transmission as “high” when there’s a risk of hospitals running over capacity, even though the rate of actual transmission is higher than it ever was. We’ve decided we’re OK with COVID ripping through the population more-or-less unchecked, since we know breakthrough infections are not only possible, but common.
People are still dying of COVID and even more people are getting long COVID (which we’re seeing develop into myalgic encephalomyelitis for many long haulers, and trust me, you don’t want it). The CDC and Food and Drug Administration have mostly abdicated their responsibility to prevent infections, focusing only on serious illness and death, while ignoring long COVID and the impact of the virus on disabled people.
And, of course, the more people get COVID-19, the more people are disabled by long COVID, which can also make them high risk, and the problem just compounds.
But even for high-risk people like me who haven’t gotten the virus, we’ve just become more disabled as a result of these societal practices.
There’s a model of disability that says that your limitations are partially based on what you inherently can and can’t do, and partially based on the accommodations society makes for you.
So while I could fully participate in, say, conferences before the pandemic (I could just rent a scooter to get around, an easy accommodation), and at the beginning of the pandemic when everything went virtual (I could participate from my couch), this is no longer the case. I am more disabled, as in, less able to do things, because society has decided that protecting people like me doesn’t matter.
I am not able to physically go to my field’s largest conference (where I’m meant to be a speaker) in September because the safety precautions are just not there, despite conference organizers doing their best. In order to attend, I would need to go on two flights where, even if I were masked, I’d be trapped in a small metal tube with no air circulation for significant periods of time surrounded by unmasked people. (Air circulation on planes doesn’t start until the flight is in the air, and with the current mess of canceled and rescheduled flights, people wind up packed together in unventilated planes on the ground for hours at a time. Not to mention that folks get trapped in airports waiting for delayed flights as well, also surrounded by unmasked crowds in an indoor setting.)
I would need to go to a hotel that doesn’t require its staff to wear masks, or it doesn’t have reasonable air circulation. And I would need to go to a conference center where people are expected to eat indoors in groups, in a building full of other conferences and gatherings that may not have masking regulations as good as mine.
This isn’t new. In April, I was supposed to go see my family, whom I hadn’t seen in a year, for Passover. Three days before I was supposed to fly out, I changed flights so that even the return trip would be within the airline mask mandate timing. When my mother-in-law got off her flight the next day, she told me that even though the mandate was in place, very few people were following it and nobody was enforcing it, and she felt uncomfortable. I canceled my trip at the last minute, and it was a good thing I did, because a U.S. district judge threw out the mask mandate on the day I was meant to fly home. I heard horror stories of people ripping off masks mid-flight and of people who expected to have an extra layer of protection suddenly trapped in a risky situation they didn’t consent to.
I’m fortunate that, for many things, there are some alternatives. I can go to the virtual component of my conference, even though that will be just a tiny sliver of the overall experience. As for Passover, my in-laws put a laptop that had me on Zoom on the table so I could participate from afar. And, yes, it was a little awkward being the only remote person.
But there aren’t alternatives for everything. Please consider that as you want to go back to your pre-pandemic life, so do disabled folks like me. Just as you want more socialization for your mental health, so do disabled folks like me.
Society has decided that people like me just aren’t worth accommodating, but we can be and do better.
If you’re in charge of an event, a workplace or an institution, please include common-sense COVID precautions. Ask folks to be masked, especially indoors. Make sure there’s great air circulation, or even better, hold your event outdoors. Ask folks to test before they show up. You won’t just be making it more accessible for folks like me — you’ll be making it safer for everyone.
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