Tenacious Truth-Telling

Living in a sick, immunocompromised, and/or disabled body, right now, is heavy. It’s never been easy – the ableist world we’ve constructed makes sure of that – but in the context of the ongoing mass disabling event that is the current pandemic, it seems extra hopeless. Disabled bodyminds are crying into the void that we are literally dying, that we all need to keep wearing masks, that the world is becoming increasingly dangerous for everyone – especially those most vulnerable and marginalized. Meanwhile, the majority of non-disabled people are attempting to “move on” and “return to normal” at the bidding of our governments. The contrast is striking. Yet, if you happen to be non-disabled (so far), you likely aren’t attuned to the cries of globally connected ill and disabled communities. Part of the work of ableist governments, systems, and societies (remember: we have constructed them) is to hide away and kill off bodyminds that don’t conform to the upheld status quo. All forms of media, all governments, too many public health and medical practitioners, are toting the line of invented “normalcy” – often spreading disinformation that endangers lives. Healthism, ableism, eugenics, and capitalism drive these engines. There is no bodymind left unaffected. We have been indoctrinated to believe that if you eat right, exercise, sleep well (seriously, look up healthism); if you’re young; if you’re healthy and able-bodied, you can be spared from illness and disability. It is, quite simply, a myth. Everyone personally encounters disability and/or illness if they live long enough. It is a part of human diversity. And yet, in this pandemic era, the opportunity for collectivism and caring for others is also neglected. We are failing miserably.

At this point, I can count on one hand the number of people in my life continuing to practice COVID precautions regularly. These people understand that their actions directly impact others, as well as their own personal safety. These people understand that to love me and others is to participate in making the world safer and more accessible. These people understand their role as individuals but also seem to see the systems at play that are undermining our collective safety and well being. Those at risk for “severe outcomes” of COVID-19 infection as per the CDC definition include: immunocompromised, disabled, children and infants, pregnant people, older and elderly adults; those who have diabetes, asthma, ADHD, heart disease, mental illness such as depression… I hope this helps illustrate that no one is immune. Vaccines are not the only way out, either. They help. They aren’t the whole answer. Layered approaches are the way – that being vaccination, mask mandates, and air filtration for this airborne virus. The information is out there. There is published data and information available to help you discern that people close to you are at significant risk if infected by COVID-19, if not yourself, personally. It’s just those in power are not telling us the truth. The best advice I can give is to listen to disabled and chronically ill folks. We are informed. We are organized. Our lived experience is invaluable. To undermine our truth-telling is simply upholding status quo ableism – you think you know better? You don’t. And yet, it’s easier to pretend, I suppose. Especially when we’ve been formed to think tdisabled bodyminds are inferior and unreliable. It’s easier to pretend until you, your child, spouse, or other loved one becomes one of us, that is. All it takes is one infection to become ill, disabled, and/or immunocompromised. Plus, there is growing data on the impact of repeated infections on the immune and cardiovascular systems (check out this great visual!) Have you noticed the number of younger folks dying of sudden cardiac events? It’s not coincidental. I doubt we’ve seen the worst. After a full year of letting COVID run rampant through our population – adults and children, alike – we are bound to see higher death rates in 2023. As Leah Lakshmi Piepzna-Samarasinha’s latest book titles suggests: The Future Is Disabled. And don’t come at me with “you’re being negative” – look, the truth is hard and scary, but that is neutral. Spinning it “positively” would be to omit the tough truth that we all need to face. We are seeing increased severity of illness in children right now with COVID, RSV, flu, and other viruses impacting young bodies in an unprecedented fashion. Our children’s hospitals are overflowing. Yet, we continue to demand our “freedom” to travel the world, eat in restaurants, and no longer wear masks indoors. But we need to understand how these decisions impact more than simply ourselves as individuals. I am gladly able to leave my home occasionally, right now. I could likely do so a bit more often if everyone was still wearing a mask. There are things I need to do – go to the dentist, renew my driver’s license, get my haircut. There are things I’d like to do – see my Mom, go to a pottery class, go to the mall or store. I cannot do these things safely when no one else is wearing a mask. One-way masking is not effective enough. And some of those “need to” activities require me to remove my mask – my sole layer of protection from all of your unfiltered breathing, coughing, and sneezing. Currently, I am able to leave my home on occasion and participate in occasional (safe) social activities, but if I become reinfected, I’m looking at a worsening of my illness. Small joys feel precarious. I cling to them yet also hold them loosely, knowing that reinfection will mean more loss. Why is my story not enough for you to mask indoors? Not wearing a mask contributes to making the world inaccessible for folks like me. That is simply a fact that you can’t argue. Every part of our lives and decision-making is impacted by the ongoing COVID-19 pandemic. To think that you can make a choice in isolation is ignorant. To claim that “not everything is about COVID” when you’re discussing anything to do with public and/or unmasked activities is to uphold ableism and endanger my life. Not to mention the lives of babies – if you don’t care about me, what about children? Are we for real?!

These days, sharing facts and telling truths has people reacting even more personally than usual. People react as though they’ve been directly “called out”. On the one hand, that gives me small hope. If you are reacting because you feel guilty, you are so close to figuring it out! You are so close to understanding your role, to acknowledging that this is super hard and we all are experiencing so much loss, but that human lives depend on our collective action. Responses to me can range from insensitive (at best) to outright malicious and degrading (at worst), these days. I know I’m not to blame for people treating me with disrespect or for however people choose to react to me. It won’t stop me from telling the truth – although rest is sometimes needed. The truth is: by no longer wearing masks, we are isolating immunocompromised and disabled folks and sending them to their graves early. We are making our world even more inaccessible. We are killing and disabling children and adults, alike. That is what insisting on unnecessary, unmasked activities is doing. That is what your choice to not wear a mask indoors is contributing to. You can ignore me; react defensively, aggressively, or violently; you can claim you know better than me – but it doesn’t change the truth. And the truth is being spoken loudly and clearly by disabled bodyminds. Stop trying to silence us – join us, instead.