Disability injustice
Benefits, mask bans, and Palestine
Welcome to The Tonic, a (usually) light-hearted, heavily resourced newsletter for folks interested in learning about long COVID, ME/CFS, and other chronic illnesses. Come for the info; stay for the whimsy. Or vice versa.
I will generally post once a week on Saturdays or Sundays: a narrative post when my energy allows and resource roundups (known here as The Antidote) at all other times. Occasionally I post more than once a week, usually to announce an event or to push brief, timely info out to you sooner.
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I’m losing sleep, my friends
Sometimes you do when you have Long COVID or ME/CFS (and countless other illnesses, I’m sure). Sometimes you know why: your sensitive nervous system didn’t appreciate that super-stimulating TV show or movie you watched too close to bedtime, or you dared to have a small square of dark chocolate (gasp!) within three hours of bedtime, or you’re worried about an upcoming doctor’s appointment or medical test. Other times, it’s anyone’s guess.
But my inability to fall asleep at night feels distinctly tied to a few things that have been troubling me lately, and the thread that pulls through them is that they are all one example or another of a disability injustice.
Government disability benefits
Monday is my administrative hearing with the U.S. Social Security Administration for my disability benefits case. By the time one gets to this stage, one has already been denied benefits twice. It took me over two years to obtain private disability benefits through my employer, through several rounds of appeals (which you can read about here), so as demoralizing as this whole process is, you know I don’t give up easily.
Why are you applying for government benefits when you already receive private benefits, you ask? Because it’s a requirement of the private insurer that anyone who receives long-term disability (LTD) has to apply for government benefits, that way if you are successful, the private insurer reduces its monthly payment to you by the amount the government pays you. It’s all about profits, and this cost-cutting measure keeps more wads in the insurer’s wallet.
But I digress. This past Wednesday, I had a call with the attorney to prep for Monday’s hearing. It was a very helpful call; she guided me on how to answer questions, down to the kind of wording I should avoid or include. She told me to answer each question in as much detail as possible, because, she said, this is how they separate the malingerers and frauds from the truly disabled. The more detail you give, the more plausible your disability sounds.
Toward the end of the call, she told me I had a strong case - I have done my due diligence in regularly seeking medical care and in trying to get better, and my doctors’ records from a wide range of providers have consistent notes regarding my diagnoses and my symptoms. However, she said, there’s one thing that will work against me.
“What’s that?” I asked.
“You’re under 50, which is considered too young to be so disabled.”
“Are you KIDDING ME?”
“No, unfortunately I’m not. They are much more likely to award benefits to people over 50, and more so to those over 55. This is what their tables tell them about who is most likely to be disabled.”
“So let me ask you a question. How much should I assume that the judge or the vocational coordinator who will also be on the call knows about the actual demographics of Long COVID? Because it’s people between ages 25-50 who are most likely to develop Long COVID. Is there any opportunity here to educate the judge?”
“I hear what you’re saying. Unfortunately, no. That won’t go over well. Plus, they never veer from what their tables tell them.”
“Well, that’s some ageist, ableist bullshit, excuse my language.”
“I don’t disagree.”
And here, as the kids say, are the receipts:
My hypothesis on these “tables” she kept referring to is that awarding benefits to folks under age 50 means the government is more likely to be on the hook for 15-20 years (people who get on disability tend to never come off of it), and that just costs too much money.
Also, judicial systems and processes are patriarchal, no matter the gender of your assigned judge. So that guidance she gave me about not educating the judge on the demographics strikes me as very, “stay in your lane, young lady.” My attorney did advise me that it could be acceptable to educate the judge on my condition by stating something like, “the way my doctor has explained it to me is X.” So, the judge in the patriarchal system MAY be able to hear what you say as long as you are citing an “authority,” a.k.a., a person from ANOTHER patriarchal profession. Got it.
But since the judge is not going to discuss with me that I’m under 50 and that this could work against me (kind of like how a chef will not reveal the secrets to their sauce), it would be untoward for me to bring this up. Untoward = could hurt my chances. So, not the time to be my usual smarmy, know-it-all self. Got it.
That doesn’t change the injustice of it all.
Let’s move on.
Mask bans being written into law in some U.S. states (read that again: BANS)
I first read about this one night this week in the latest post from the People’s CDC (bolding mine):
“North Carolina is attempting to pass a law that would ban people from wearing masks in public, even if the masks are for medical purposes such as protecting ourselves from an unchecked pandemic.”
I could hardly contain my outrage upon reading this. How the fuck does my immunocompromised self wearing a mask infringe upon anyone else’s rights? How can it possibly be constitutional to stop someone from wearing a mask in public in order to protect their elderly or pregnant family member at home? What about folks who are undergoing chemotherapy? There are many more examples here, but you get the idea.
I woke up the next morning to another article about it: North Carolina bill to curb mask-wearing in protests could make it illegal for medical reasons too.
On Wednesday, it passed in the NC Senate and is moving through committees back to the House, so I don’t think Diego is right below when he says it’s now illegal, but his point about bike helmets, thimbles, etc. is well taken.
How is this not FASCISM??
(I know, I know. There have been plenty of other things that have happened in the U.S. of late to have called fascist, including abortion bans that are purportedly “pro-life” except of course in the case of the life of the person carrying the embryo, and we know shes - and certainly theys or hes who are able to get pregnant - don’t count as fully actualized people with human rights of their own).
Getting back to the mask ban brand of fascism, you can take yourself to Wikipedia for a fuller definition of fascism (⬅️ just click on that word), but two of the cited defining characteristics that I want to focus on are: forcible suppression of opposition and belief in a natural social hierarchy.
Calling the police and/or using violence on protestors who are themselves not being violent is an obvious example of forcible suppression of opposition. But so too is a legislature doing everything in its power to pass laws that significantly curtail the rights of individuals in a democratic society to safely protest (by wearing a mask during a pandemic, among other things).
It almost doesn’t matter at this point what the protests are about (except that it does; that’s the next section below). Everyone has a right to dissent. It’s what the American Revolution and the founding of these United States were about, right? Or did these legislators sleep through middle school and high school? Too many soldiers have given their lives to defend these very rights, and any legislator of any party that doesn’t honor that is a disgrace.
But let’s talk about the second characteristic I mentioned, because it’s way more insidious on its path to evil: belief in a natural social hierarchy. Simply put, it’s the idea that some people count more than others. I could go down a very deep, dark rabbit hole here, but as my friend Kym always says, “Google is free.” If you never learned about fascist regimes and who they considered at the top of their hierarchies and who they didn’t, you can find the answers online. One could (and should) argue that even societies not technically considered fascist carry out social, public, and economic policies that serve to create or maintain similar hierarchies that disadvantage and “other” folks considered “less desirable.” (See housing discrimination, IRS audit rates, healthcare disparities, environmental racism, and lack of accessibility for the disabled, to name just a few. Oh, and I recently read that last year, the Governor of Arkansas, Sarah Huckabee Sanders, signed legislation relaxing regulations around CHILD LABOR. Which children are primarily subjected to child labor? If you guessed “immigrant children,” you guessed right. They simply count less than other children, you see).
During this pandemic, there have been shifting tides of disability injustice that might have been imperceptible to you if you or a loved one doesn’t have a disability that renders one of you susceptible to further harm or death if you don’t take certain precautions. Such precautions include isolating at home during peak cases of infectious illnesses, wearing a well-fitted N95 or KN95 mask when you do venture into public, testing yourself and having friends/family test when they’ve spent time in close quarters with others. Many have cited “pandemic fatigue” as a reason why the majority of “healthy” individuals stopped taking basic precautions to protect themselves, and certainly those that are protective of others. (Let’s not get started on how the idea of “fatigue” around mere inconveniences stacks up against the concrete-blocks-tied-around-your-limbs kind of fatigue that often comes with conditions like Long COVID and ME/CFS). For about three years now, I and my fellow LC and ME/CFS sufferers have felt left behind and forgotten by society at large, not so much by people living their everyday lives, but by the cavalier attitudes around what a virus like SARS-COV-2 is capable of doing to every system in the human body, and how repeat infections have been proven by research to be the equivalent of playing Russian roulette from a Long COVID perspective. If our life-altering experience of extreme suffering served no other purpose, we desperately wanted it to serve as a warning to others. But those others, for the most part, stopped listening or stopped taking the risks seriously.
So what the vast majority of us have done is we’ve gone on taking our own precautions and we’ve stopped expecting society to regard the 17+ million Americans and the 100+ million worldwide as a cautionary tale. Gone too are the principles around health privacy that we sign our lives away to in doctor’s offices so they can say that we know we are ‘protected.’ Because who do you see wearing masks now? A handful of elderly and an even smaller handful of people like me, who appear youthful and therefore assumed to be at low risk. I might as well use white-out to paint my diagnoses across my black KN95 mask, because when you see someone my age headed your way wearing a mask, you either think one of two things: 1) I’m paranoid/nutso or 2) I’m immune-compromised or trying to protect someone at home who is. The mask obscures half my face, but it does nothing to shield my privacy.
In just under two years, the shift went from “we’re all in this together; let’s protect the vulnerable and cheer the healthcare workers” to “but I got the vaccine (or I didn’t) and I am over this already.” What is to be done about? We (the vulnerable) go on wearing our masks and deciding that we don’t give a shit if someone thinks we’re #1 from above; the risks of getting sicker or dying are too great to care what anyone thinks of us.
Except now there are states trying to pass mask bans? HUH? Here’s what they are apparently telling us:
“since you’re disabled (or elderly, or at-risk), your life has less meaning and so you fall at the bottom of the social hierarchy and you therefore not only don’t deserve protections from government or society, you will be considered a criminal for trying to protect yourself.”
Make it make sense. Convince me that it’s not fascism.
I am so disturbed and angered over this. I want to curl up in a ball. I want to scoop up all my friends and family that live in these (mostly southern) states, move them all up here, and then merge our northern states with Canada and secede (except that Canada has its own troubling approaches to things, as you’ll see in a post embedded in the next section).
dropped a post this week along the same lines:
And to my dear long hauler friend who recently left the brutal winters of New York for the warmer climate of North Carolina, in particular because her flavor of LC made her super-sensitive to the cold weather but not at all uncomfortable in the heat (mine does the opposite), I am so sorry. Everything is trash right now, and nowhere feels safe.
The injustice of it all.
Next.
Palestine
Last week, I received an email from the Long COVID Justice listserv and while I read every one of them, this one in particular caught my eye and has weighed on me since.
If you are not familiar with this group, here is what it says on the homepage of their website:
We are leading grassroots, collective efforts to confront the Long COVID crisis, while centering racial, social, economic and disability justice.
Our work is done by and for chronically ill and disabled people, our families and communities.
The email I received was all about the rampant disability injustice happening in Palestine. These two quotes from the email shot right to my heart:
“Being pro-Palestine and against anti-Semitism go hand in hand, because all systems of oppression reinforce one another, and none can be fought in isolation.”
-Marwan Kaabour
“Disability Justice means that we must fight to dismantle the systems that are inherently and strategically massively disabling and that oppress and lead to further harm and suffering to disabled people. There can be no Disability Justice without a Free Palestine.”
Long COVID Justice then stated, “We hope you will join us in calling for a permanent ceasefire and end to the genocide in Palestine, along with pandemic justice, liberation and care for all peoples everywhere.” They included several links to resources, including this poignant blog post by a self-identified white, disabled, queer Ashkenazi Jew: CRIP CALL TO ACTION: Why disabled people living in the US need to be calling for a long lasting ceasefire in Israel-Palestine.
It was written last November and while its statistics and facts are a bit dated as a result, the sentiment remains the same: you can be Jewish and both care deeply about the Israeli hostages and still be horrified by what the Palestinian people are experiencing at the hands of Israel.
Hospitals leveled. People maimed and disfigured. Medical supplies, clean water, and food all stopped from getting through. No sanitation, which will undoubtedly lead to things like cholera and Hepatitis A outbreaks. To say nothing of those who were already disabled in Gaza before last October. To say nothing of the deep and lasting mental health impacts of experiencing the trauma of constant bombardment, whole families being wiped out, and the ensuing profound poverty to come.
I share with you a moving piece by a fellow long hauler here on Substack. She writes from the perspective of a Canadian Jew, a government employee critical of her government’s choices right now, and an expert in discourse analysis and storytelling. Do not miss it:
She opens with noting that this post is a departure from what she normally writes about (Long COVID and health policy), and some of you may be thinking this is a departure for me, too. After all, The Tonic is billed as a “light-hearted” newsletter. It has always been my intention to provide abundant resources on the topics of Long COVID and ME/CFS but to also give such heavy, life-altering issues a more hopeful, even fun treatment. And I will continue to do that.
But this is, more than anything else, a health newsletter for the masses. And anyone at any time can become disabled and gain firsthand knowledge of the injustices that come with this life. The dots that Long COVID Justice connected for me here are not ones I can in good conscience ignore or sidestep.
The Tonic is a refreshing concoction of wellness resources and stories for those interested in COVID, long COVID, ME/CFS, and other chronic illnesses…served straight up, with a dash of humor.
Coming at you straight up this week.
In sickness and in health,
✌🏻 Amy
(No After-party this week, because there’s a time and a place for humor and it’s not here and now. But here’s a pic of one of my purple irises on a rainy spring day).
You tell ‘em Amy! Once an advocate, always an advocate. Good luck at your hearing!
Good luck on your hearing! Here’s hoping the judge really hears you!