House of Nettles: #disability

2026-03-13T17:09:29Z

I think if I were making a movie I would probably subtitle it by hand before I'd let it be presesd to disc without subs

2024-10-10T08:25:46Z

tulip wrote:

my makeup philosophy

when i was younger, i was honestly pretty disinterested in makeup and fashion trends. i found it alienating; i did not fit in with what was popular among the youth of my assigned gender. and i think i knew that it was a futile effort to even attempt fitting in. no, i knew i was a little weirdo who felt infinitely more comfortable hiding behind a computer screen.

but there was one day where i was at the local drugstore, and i made a shortcut through the makeup section to get to the pharmacy. something caught my eye. it was a display of eyeshadow quads, all featuring different color palettes. and i stopped for a moment, curious about the color combinations. color theory was already a pretty big interest of mine at that point; i had been doing a ton of limited color palette drawing exercises, and the quads on display reminded me of the palettes i'd use for practice.
…

I really appreciate tulip's articulation of their approach to makeup as an art rather than an attempt to meet impossible beauty standards. I'm always compelled by ways to consciously produce art in places that aren't generally thought of as sites for art, and tulip has a particularly interesting perspective coming to makeup from a painting background. I haven't worn anything beyond lipstick and the occasional eyeliner in years, but this has inspired me to consider breaking out the eyeshadow palette again...

2024-10-06T09:09:37Z

Shel Raphen wrote:

Kol Tzedek Synagogue and Masks: A Call for Accountability

This was the last community space where I felt fully included. This was the last community space where I could meet a new person by chance, and not have my mask be a social barrier. In other community spaces, people do not try to socialize with me. Unmasked people avoid me so long as I am wearing a mask. I have conducted experiments. During times of low-transmission, I have experimented with taking my mask off in community events where people previously had ignored me despite my generally outgoing personality. Suddenly, everyone becomes very interested in talking to me. People welcome me to the space as if I am new. I tell people that we had actually met before—multiple times, in this same space. They ask where I had been this whole time. I tell them, right here, the whole time, wearing a mask. At the next event, I will put my mask back on, and those same people will go back to ignoring me when I greet them by name. Kol Tzedek was the only space where this was not an issue, because everyone was wearing a mask.

[...]

I wish we could have negotiated. I wish we could have agreed to compromises. I wish it was not just a venting session where fifty disabled people cried in our own ways and a middle-aged cis woman took notes with a blank facial expression. I remember at one point, she asked me why I do not simply attend virtual services. I am grateful for the existence of virtual services in this world, but to suggest that they are comparable to an in-person community space is a joke. If virtual services were just as good as in-person services, then why don't the able-bodied people just attend virtual services? Why did I donate hundreds of dollars to fundraise for an expensive new ADA-compliant building for the synagogue? Why would I give 5% of my annual income to a local synagogue just to attend virtual services? There are plenty of free online options I could have gone to instead.
…

Shel's essay about her former synagogue rescinding their mask requirement for services and in doing so effectively barring their disabled community members from full participation is painful to read, but it's also one of the best articulations I've seen of the grief and alienation of being disabled^[1] during a pandemic. This experience is particular to the Jewish community in Philadelphia, but at the same time it is one of a pattern of moral failures that have been happening since the pandemic began and people en masse started facing the immediate question: are you willing to sacrifice your comfort to give other people space to exist?

This is a rawly emotional post that slides towards despair at the end, and I do want to put back on that. I don't at all blame Shel for feeling that pain or for expressing it here, but—at this moment, distant from any specific instances of people I trusted catastrophically failing to stand up in solidarity—I want to juxtapose that despair with a note of hope. I continue meeting new people who are happy and even excited to have spaces where masks are required. The Emerald City Eggbugs whose founding principle is COVID-safe gatherings has nearly 40 members less than a week after it was announced. As much as people may wish themselves free of us and our problems, we are standing tall and if no one else will make space for us we will make space for each other.

Including the voluntary disability of wearing a mask. ↩︎

COVID Denialism and Disability Justice

2024-09-21T01:21:00Z

This is a post whose seeds have been bouncing around in my head for years. I always intended to write it up and publish it on Cohost, and so the twilight of that storied website seems like as good a forcing function as any.

In this post, I seek to understand and explain the pervasive phenomenon of COVID denialism from the perspecitve of disability justice, specifically as someone who remains extremely cautious and anticipates doing so indefinitely. It's not intended to excuse this behavior—denialism is actively harmful to everyone the denialist interacts with and fundamentally eugenicist in effect whether or not in intention. But understanding and even empathizing with people who believe falsehoods and do harm can be valuable, especially when they make up such a huge portion of the world and for many of us are inescapably part of our networks and communities.

The first crucial thing to understand is that, if you're at least on board with the basic idea that COVID denialism is a pervasive problem, COVID-19 has already disabled you. Even if it didn't give you long-term side effects, even if you're lucky enough never to have caught it, you have been disabled by it. Or to be more precise: you're disabled with respect to COVID-19. The specific agent of your disability is the society that subjects you to snide remarks and outright harassment for wearing a mask, that closes off opportunities for social interaction and employment to you, that makes it impossible for you to exist within it without putting your health at risk.

This is an analysis based on the social model of disability, a major branch of disability theory that emphasizes the way disability is created by a society's failure to provide accommodations for certain bodies and minds rather than intrinsic aspects of those bodies and minds themselves. To use a lightly clichéd example: my severe nearsightedness doesn't function as a disability, because I exist in a society^[1] that accepts it as "normal" and provides easy access to socially unremarkable assistive devices (glasses), or even invisible assistive devices (contacts) if I so choose. But my sleep disorder is a disability—society doesn't consider it "normal" in the same way, and so it's seen as my personal failure and I have to work to make sure it doesn't affect my relationships^[2] or employability.

Using this model, if you exist in a society that has accepted the uncontrolled spread of COVID-19 as normal, the attempt to avoid catching this disease is itself a disability. Society is organized to systematically deny accommodations like mask mandates, sanitizing ventilation^[3], lockdowns and contact tracing, and free access to vaccines, prophylatics, tests, treatments, and protective equipment. Depending on the specific activity and your risk tolerance, public existence while taking reasonable COVID precautions ranges from requiring serious equipment and preparation to being outright impossible. Even if your body isn't any different than it was in 2019, you are functionally disabled by the society you now exist in.

If you have an existing disability, including Long COVID or even just the incremental damage that each COVID infection does to your immune system^[4], the situation is even worse. Your risk tolerances are likely to be lower, and you may already suffer from ableist limitations on your ability to engage in the world that are compounded by COVID. You become intrinsically multiply disabled just by virtue of the total failure of our social structures to create a world in which it's safe to exist.

The Category Myth of the Abled

I don't remember when exactly it was that I started taking seriously the possibility that I could become disabled at any time. It could have been in college, when my friends would share blog articles that often discussed disability justice. Certainly once my wife was diagnosed with type 1 diabetes in her 20s the point was driven home with terrible force. But for most of my adulthood, I have taken it as a fact of life that something unexpected could happen out of nowhere that would radically change the parameters under which I lived my life.

This is not how most people think.

The categories of abled and disabled are not broadly considered to be permeable. Certainly, people recognize that someone can get in a car crash and lose the use of their legs, but they don't expect it will happen to them. When it happens to someone they know, people desperately claw for reasons why unreasoning fate took this turn—were you driving recklessly? did you eat too much sugar? did you displease G-d?—because they feel a need to shore up their confidence in their own security in the category of "abled".

This is what I'm calling a "category myth": the tale people tell themselves that being abled is a rigid ontological division that cleanly separates those who are from those who are not. Although the categories of "abled" and "disabled" do exist in the ways people's relationship to the society around them is mediated by their bodies and minds, their blurriness and the ease of movement between them is critical to their structure. To insist on clean boundaries, to buy into the category myth, is not just to internalize an inaccurate understanding of humanity but to enter into a way of thinking that is predisposed to doing harm.

Because this category myth isn't just incorrect, it's oppressive. All axes of oppression are wrapped around similar myths. This is why sexists are so threatened by transsexuals, why racists invented the crime of miscegenation. An oppressive mindset demands a clear and permanent division between oneself and one's victims; a mode of thought that relies on clear and permanent divisions is at high risk of enacting oppression, knowingly or not. Those who are unable (or unwilling) to imagine themselves becoming disabled are the ones who do the most harm to people who already are.

Understanding Denialism

I have struggled tremendously with the emotional weight of seeing more and more people in my life succumb, to one degree or another, to denial about the risks posed by COVID-19 and the precautions necessary to proportionally mitigate those risks. At the end of 2021, I saw first Delta and then Omicron cause wastewater levels to rise higher and higher, while more and more businesses dropped mask mandates. Through 2022, friend after friend posted unmasked selfies out in public or invited me out to bars. I fought with my parents to try to keep them taking precautions, and then gave up and just tried to accept the heavy knowledge that their life expectancy would simply be substantially lower than I had thought.

I began to succumb to despair. I couldn't stop wondering, why? Why would people do this, when all the evidence is there for them to see? Succumbing to the "COVID is over" propaganda campaign was part of it, sure, but there was too much overt cognitive dissonance in the way people spoke about the disease for that to be everything. It was in seeking an answer to this question that I began thinking through the ideas I'm presenting here.

In our collective retrospective vision, the relatively brief period of lockdown during 2020 is spoken of as a deeply traumatic thing. And I think that's accurate, but not (or not entirely) for the reason it's usually framed as. I think it was traumatic specifically because it shattered people's category myths of being "abled". Everyone was disabled in that moment^[5]. Something unexpected happened out of nowhere that radically changed the parameters under which they lived their lives. Suddenly they found they had to use assistive devices (masks), they had limited access to spaces and people they had taken for granted, they were forced to consider the fragility of their own lives.

This was traumatic not just—not even primarily—because of the specific facts of the lockdown. It was traumatic because it forced people to confront just how thin the barrier was between them and someone who could only enter the grocery store masked at 1am even before COVID. And that knowledge was, broadly speaking, intolerable. People could not bear the enactment of themselves as part of a category that they considered to be lesser, weaker, broken.

And so they find the prospect of taking COVID precautions, which is to say voluntarily re-entering a state of disability, essentially unthinkable. Even to protect their loved ones, even to protect themselves, it doesn't matter. They cannot allow themselves to consider a world where that would be necessary, because that would be a world where they are all the things they think of disabled people as.

So when you hear someone say, "I can't let COVID control my life," understand that they mean they can't let themselves think about becoming disabled. They can't open the floodgates that would force them to reevaluate everything about how they conceptualize disability. They can't conceive of doing what millions of disabled people do every day and play with the cards they've been dealt.

Whether this will help you feel a bit less despair or not, I don't know. It helped me. I hope at least it can give you a path to a clearer understanding of why people arrive at these arational points of view and what keeps them there, and maybe even give you a few clues as to how to break them out of it.

And, it's worth noting, a minimally precarious position in that society. For someone without vision insurance, the same level of nearsightedness could be a severe disability. ↩︎
The people around me are very chill about this because my friends are wonderful people, but someone with less wonderful friends might have a lot more trouble here. ↩︎
Especially audited sanitizing ventilation. Venues can update their HVAC (or just say they updated their HVAC) but without accountability for achieving a certain level of ventilation or a clear scientific understanding of what different ventilation levels actually mean for the likelihood of spread, it's near impossible to factor that into a risk calculation. ↩︎
What Is COVID Actually Doing to Our Immune Systems? ↩︎
Or, arguably, some people who were already disabled briefly became much less so by virtue of the societal standard of "normal" shifting to the point where their access needs were unmarked and easy to fulfill. But as far as challenging the category myth goes, that's the exact same thing. ↩︎

House of Nettles: #disability

my makeup philosophy

Kol Tzedek Synagogue and Masks: A Call for Accountability

COVID Denialism and Disability Justice

COVID in the Social Model of Disability

The Category Myth of the Abled

Understanding Denialism