Remember when we were doing “we’re in this together” sidewalk chalk and cheering for healthcare workers every evening? I think I had this hope that we really were “in this together.” I had this desperate optimism that this would be a turning point, that finally people would understand a little of what disabled and immune compromised people experience daily. Isolation, having to gauge every outing for safety and accessibility, limitations on movement and access. These things are a constant for disabled people, not a hiccup in “normal.”
I guess I’d hoped that this would make people understand the challenges and frustrations and stress of living in a world that treats disabled people as an afterthought.
What happened after those first few weeks was a stark reminder that ableism runs deep. That a “return to normal” is more important over actual lives. That minor, very minor, inconveniences would be treated as an affront to civil liberties. Considered a burden too heavy. The abled privilege of thinking a simple act, like wearing a mask, is unbearable.
The disabled community would be laughing at the weakness of this mentality if it weren’t killing us.
It would be laughable if it weren’t keeping our children from attending school. Preventing us from accessing vital healthcare. From working. From going to the store, from literally anything that involves being in public. To be disabled is to live with constant change, a whack-a-mole game of symptoms. It’s waking up every morning and your first thought is “what will it be today?” Will I be able to get out of bed? Will I be able to breathe? Shower? What new symptom will greet me today?
It’s having to plan ahead for everything. Will I be able to physically access this store, will I be putting my health at risk if I go? Will I acquire yet another diagnosis to my already dizzying array of diagnoses?
It’s seeing the rates of Long COVID growing, watching in real time as people are initiated into the marginalization of disability: the medical gaslighting, the isolation, the fear and confusion, the grief of realizing you’re disabled and no one can tell you if or when you’ll get better. It’s wanting to prevent anyone else from the fate we are all too familiar with.
It’s desperately speaking out and warning others about the very real risk of a chronic post-infection illness, trying desperately to shield anyone from experiencing our reality. It’s doing this knowing you will be scorned. Considered hysterical. Alarmist. Tuned out. And doing it anyways because you care more about their health than whether they invite you to social gatherings.
It’s watching your community debate mask wearing. It’s watching parents claim that masking in school is a traumatic event for their child. It’s realizing that when the stakes are high, even for their own health, that most people will not want to adapt to the most basic protections. It’s the ice cold chill down our spines: If they won’t protect their own children, how can we expect them to care about us?
It’s realizing that your community, your neighbors, your leaders, accept your death as collateral damage. Ableism in the face of imminent threat is more than a micro-aggression, it’s barbaric sacrifice. Shoving the immune compromised into the volcano. Except there are no gods to please in this exercise. Only selfish, superficial wants. Wants that seem to have been manufactured and hyped into existence. “Wanting” to not wear a mask is the most hollow of wants. A nonsensical hill to die on. Except the hill has rivers of lava engulfing others as the debate wears on.
The push to “return to normal” is a game of pretend. It’s not based in reason, but in profit motives and political calculus. Public health is an afterthought, chronic illness and disabilities be damned. They are prematurely proclaiming victory as they step over the wounded, ignoring that people are stepping on land mines all around them. The people leading the charge to normal aren’t alone. It’s human to want to feel safe, to feel like the threat is gone. But if we’re being honest with ourselves, we know when we’re being played. We know that approaching a million deaths in the U.S. is not normal. We know that over 12 million children have been documented in the US as having covid. So far. We know that between 10-15 percent of them will end up with Long COVID. I’m no good at math, but that’s 1.2 million children who will be disabled from COVID. So far.
The mental gymnastics to justify the ableism in the “urgency of normal” mindset is worthy of a gold medal. Beijing is calling. Oh. But you’ll have to wear a mask to compete. Sorry.
The absolute, unmitigated absurdity of this time. The rearview mirror will be baffling. I can already hear future generations asking “How could so many people accept mass death?” Questions of how cruel indifference was absorbed, excused, and sanctioned will be debated in classrooms and in historical texts. We have all looked at photos of past atrocities and wondered about all the “nice” people. How they just floated along, knowing that harm was taking place, but enjoying life alongside death and suffering. The human capacity for apathy is and always has been a destructive force. Apparently it’s rather easy to avert your eyes and muffle the sounds of pain and suffering.
The urgency of returning to “normal” is #PandemicAbleism as policy. It is a macro-aggression. Eugenics under the headline of pandemic fatigue. Oh. You’re tired? Fatigued? Ready to get back to normal? If only the people you are sacrificing could relate.
Appealing to empathy and morality is not enough in an ableist society. In a truly compassionate and humane world, explaining the risk to millions of people would be enough. Instead we have doctor-pundits with PR teams telling viewers that while it’s “unfair” to disableds and vulnerable children, it’s time to “move on.” Indifference with a touch of “too bad, so sad.” Conveniently ignoring the risk of Long COVID (that is a risk to me, you, your triathlon neighbor, and doctor-pundits) in the urgency to return to “normal.” The disabled community is acutely aware of the reality of post-infection disabilities. Pretending like it’s not a risk is not an option for us. Reality is unavoidable when reality affects your health on every level. When survival is grounded in assessing reality every day.
You check the weather or your horoscope or your stocks daily? Disabled people have a daily checklist that would make your head spin.
Returning to normal is wishful thinking. It’s a facade, a movie with pretty houses on a pretty street, but the reality is scaffolding and set design. It’s the family who pretends like all is great! Fine! We’re happy! But the reality is living with an abuser and dinners with forced laughter and delicate dances of appeasement. Pretending things are normal when they’re not has never ended well. It’s only exacerbated the reality that normal was trying to ignore. It’s toxic and unhealthy. It’s abusive.
There is no “returning” to pre-COVID. We can’t rewind the clock and unravel the thread. There is an alternative and it’s not as bleak as the “return to normals” would have you think. It’s proactive, based in facts, data, and compassion. It’s the #UrgencyOfEquity: a plan to offer protective measures that leave no one behind. It’s a plan for us to operate and function more seamlessly in a post-COVID world. It’s masking when community spread is high, unmasking when infections wane. Improving air quality indoors, which offers health benefits beyond COVID. Taking the stress and guess-work out of staying healthy with clear guidelines and communication. Fewer illnesses, fewer disruptions in commerce and school, fewer chronic illnesses in the form of Long COVID.
No one wants an endless future of masking, no one is suggesting we live in a dystopian gray expanse of isolation and lockdowns. The insinuation and suggestion that disabled people want that is propaganda – aimed at painting our community as holding everyone back. It’s manufacturing consent to disregard us and dispose of us.
What we want is to protect you, your children. To have equity and facts drive policy. A bright future of fewer illnesses, cleaner air, logical protections when risks arise. It’s a call for community. Collectively choosing to care and take action when necessary. To adapt. There has never been a better opportunity to finally, belatedly, consider the needs of the most at-risk and craft policy and guidelines around them. To finally, belatedly, understand that ableism hurts us all. To accept and welcome reality. It’s cleaner, truer. It sits in your gut more comfortably than the angry pestilence of denial.
It’s a chance to do all of this because it’s the right thing, but also because no one is immune from becoming disabled. Maybe doing what’s right is always self protective? Maybe listening to disabled and chronically ill people is the way out of this, the way to a healthier and more just existence for all?
Or maybe we’re a society of platitudes on sidewalks. Nice in theory, but washed away at the lightest rain. Positivity that feeds the privilege but starves the marginalized. Paper mache solidarity that crumbles under the slightest pressure.
Maybe we can be the not-so-nice people historians speak of one day, the ones who refused to be apathetic and demanded better. Loud, but kind. Stubborn, but honest. Unafraid to do the right thing.
Author’s Note: I haven’t written about my personal history with chronic illness, but I was diagnosed with ME/CFS in 2004 and am the parent of a chronically ill child. This post will also be published on the Long Covid Families website. If you or someone you love is struggling with Long COVID or a post viral illness, please visit longcovidfamilies.org