Mask Up, Speak Out!
MASK UP, SPEAK OUT!
DISABLED LIVES ARE AT STAKE (mine included)
As I've spoken to friends and community over the past month, it's become clear that a lot of us are suffering unexpected existential crises or moments of utter collapse. The pandemic continues to exhaust bodies, minds, and hearts, especially for those of us who are disabled or chronically ill, as well as for parents, kids, and frontline food, healthcare, and transit workers, those who are unhoused, and many others. I have been heartbroken to the point of an ongoing very low mental health period by the level of ableism and outright denial I have seen not just in the world at large, but in my own communities. I want to take this moment to remind you that the people still at risk of death or long-term debilitation by Covid-19 are very real people. We're your neighbors, your grandparents, your friends, your partners, your colleagues.
Despite the very confusing (and scientifically inaccurate) messaging from the CDC, there are lots of us scientist-trained folks out here who know how to read a scientific study, interpret numbers, listen to experts when we're out of our depth (I know, this used to include the CDC, it's all very confusing), and understand epidemiological patterns. The actual data we have confirms that this is not over, and that anyone who gets even an asymptomatic case has a very high likelihood of suffering from long-term symptoms for a minimum of several months.
Some people, again regardless of how healthy they are and how mild their case, will get a full-blown case of Long-Covid, a lifetime disability that affects the cardiovascular and nervous systems in drastic and dangerous ways (to learn more about the data we have and the realities of Long-Covid risk and repercussions, as well as where I get some of my information and data, check out the amazing work of Body Politik). As my doctor reported to me, many in the medical field truly working on this illness understand it to be a vascular system disease caused by a viral infection that just happens to strongly affect the vasculature of the respiratory system, NOT simply a flu-like respiratory infection as originally reported.
I share all this not to scare you, but to try to give you a sense of the world inhabited by those of us who are those the CDC was referring to when they said "only people with multiple comorbidities are at risk of dying from the virus, and that's good news." We are those the CDC has deemed disposable. That's me.
As someone with disabilities that cause long-term symptoms that very closely mimic Long-Covid, I can tell you what I've told my communities, and I hope you'll believe me: this is NOT casual, it is life-altering, and you don't want it. One of the reasons I am sharing about my self-run business here in this newsletter is because, even with some recent improvement in symptoms, my ability to work full-time remains in question due to my disabilities (so if you've been thinking about reaching out to work with me, please do!) To earn your living as a disabled person in this country is beyond difficult - often, it's impossible. Diasbled Black, Indigenous, and people of color, especially those who are queer or trans, are bearing the worst of the brunt of this pandemic and its ableism.
So, what can we do? It's actually really simple: use the tools we already have, where we can.
Mask. Test. Talk. Track. & Reschedule.
Even for outdoor gatherings (the outdoor transmissability of the current strains is higher than the original ones), do these things. Our tools include KN95 or N95 masks when indoors or within 6-10 ft of another person outdoors, rapid tests before gatherings and/or masks at those gatherings, PCR testing weekly if you can, and sharing about our recent travel and covid-exposure-risk with each other BEFORE we gather. And RESCHEDULING is an amazing tool. Access to these tools entirely depends on privilege and cirucmstances - financial, professional, health, family, school, housing, etc. - so if you have the privilege to employ them, and even to help others access them by purchasing tests or masks or contacting event organizers, PLEASE DO IT! If you can't do all of them, do as many as you can - the more overlapping tools we use, the better. If you can get the vax and the new, strain-specific, bivalent booster, you will not only be helping to protect yourself, but all of the disabled and chronically ill (and everyone else!) people around you.But vaccines alone are not enough to prevent transmission to more vulnerable, more-likely-to-die people like me. That’s where this toolbox comes in. Mask. Test. Talk. Track. If you can, reschedule if anyone has symptoms or positive test results if you can. And if you can’t reschedule, be as absolutely transparent as possible to those involved, so they can take measures to protect themselves.
I'm right there with all of you in the mental health trench this pandemic has caused or worsened. We need to socialize. We need community. We need joy. In order to survive, those are necessities. No one knows this better than the disabled community; everyone in it that I'm speaking to feels desperately isolated. You can change that. You can help make community accessible for all. I know better than anyone that masks are uncomfortable (don't even get me started on nasal swabs) - I have Postural Orthostatic Tachycardia Syndrome. Masks make me hot, dizzy, and liable to have my blood pressure drop and my heart rate to go through the roof. I wear them anyway (and go outside to take breaks or lay down when I have to). You can do it. Not cloth masks: KN95 or N95 if possible. Need to make it fashion? No problem. Check out Vog mask for N95-grade, reusable cloth masks.
Keep in mind that right now, as we speak, there is an entire group of people who are effectively barred from public spaces and "equal opportunity" workplaces (due to lack of mask mandates and mask-wearing, lack of covid protocols for events and gatherings, and lack of government support for those who need to stay home from work or school when sick or symptomatic, but can't without financial or childcare support).
Historically, we on the left who believe in justice have resisted and fought back and made our voices heard when an entire identity category was being systematically excluded from participation in public life. The time has come to do so again now. If you're not disabled yet, if you live long enough, you will be. And there's nothing wrong with being disabled. It's an amazing community. But the point is that we all have a vested interest in supporting communities of disabled people to access social events, human connection, and public life, things that are generally already made extremely difficult for us by other barriers to access, by laws (or lack thereof), by our symptoms, and by the structures of modern communities.
If you want to fight for justice and equity, amazing. First of all, VOTE, and do it every time, local elections matter immensely on these issues. Second of all, try re-integrating these few key safety tools of masks, tests, talks, tracking, and reschedules into your routines, public life, and events. That alone is a huge act for justice and access right now. Want to do more? Try speaking up, writing, walking or rolling out, with your communities, at your local watering holes, to event organizers, at your workplace, to your friends, if they're not doing these things, on behalf of protecting the vulnerable, and also yourself.
I am your friend, your community member, and I am asking this of you. Please fight for and with us. We are so tired. We are so isolated. We are so sad and hurt and angry. We want justice, we want joy, we want human connection. We want and need to access work. We want to play and participate. We want to contribute. Without dying, or risking further severe disability. Together, with your help, we can tackle this issue that is so often left out of conversations about justice and equality on the left, even in radical spaces.
Ableism isn't just a "hurts-my-feelings" prejudice. It is a life-endangering, medically harmful, community-splitting, access-to-basic-human-needs-destroying system of barriers and behaviors, and this pandemic has crystallized just how bad things are. You, in your small everyday actions, actually CAN make a huge difference on this issue. It's not confusing what needs to happen, what we need to do. We just have to do it.
Mask Up, Speak Up: Disabled Lives Are at Stake.
If you're in need of event-design support to help make your event covid safe and more accessible to all, including disabled people, or you're interested in a one-on-one learning session to go more in depth on my covid protocols, recommendations, and reflections, you can contact me here to set up a 90-minute coaching session with a focus on covid and accessibility. If your team is in search of training around accessibility design-thinking and covid safety, you can set up a 90-minute Scope and Plan session here to get that set up.
I don't offer free 30-min calls/sessions on this topic like I do for others, because I already do so much free consulting on this issue as a disabled person in my daily life trying to convince people I love not to put my life at risk as a condition of accessing their events and their company. It is extremely hard on my mental health, requires overexposure of personal details that I'd much rather keep private, and yet often results in absolutely no change in action or behavior. My illness gives me very limited energy, and at this point, if I'm going to do work that is that involved and relies on my expertise, emotions, and energy, I can't afford not to get paid for it. However, if you're a fellow disabled or chronically ill person, and you're in search of one-on-one coaching to design a more joyful and accessible life amidst the ableism of covid, you are absolutely welcome to book your free call here!
Thank you my loves for taking the time to read. If you're new to the newsletter, they're not usually this long. But my work is, first and foremost, to help progressive communities imagine, design, and implement the systems and stories we need for the earth and its people to survive and thrive. We have a huge opportunity to be remaking the world into what we dream of right now in terms of equity and access, and by and large, we're missing it. Let's change that. Let's learn from disabled genius to co-create the worlds we need, now, with joy and tenacity.
Deep, deep appreciation for and love to you in this ongoing hard time. Whatever you're grappling with, I'm here for and with you. Please reach out if my work can in any way support you, your team, or your community.
With love,
Rachel
"To the world we dream about, and, to the one we live in now" - Orpheus, Hadestown