COVID-19 has created a panic-tier system

May 17, 2020 7:06 PM

Some of us are being told that we shouldn’t concern ourselves with the pandemic. We’re privileged enough to not care, while others have to shoulder the burden of worrying all the time. This is ableist.
posted by katra (35 comments total)

Sorry, but this essay is not argued well even if there may be a germ of an idea in there. For instance, the author claimed its ableist, and thus presumably illegitimate, to complain about being forced to work in person while sick during a pandemic.
posted by mikek at 8:06 PM on May 17, 2020 [10 favorites]

There's definitely more than a germ of an idea. If I were to restate parts of the article: people with chronic health conditions were living the lockdown life before anyone else, and the way people accommodate when it happens to *them* rather than someone else demonstrates a pervasive ableism. And when I consider that statement? I can't really disagree.

The dissonance for me is that I'm used to thinking and reading about systemic bigotry along race and other characteristics, and how that influences how we do things in less than conscious ways. I'm not used to considering health conditions, obvious or "invisible", in the same ways.

It's definitely food for thought. I wouldn't have flagged some of the linked tweets as "ableist jokes", for example, but I could see how assumed healthy people complaining about your day-to-day would hurt.
posted by Anonymous Function at 8:32 PM on May 17, 2020 [15 favorites]

Sorry, but this essay is not argued well even if there may be a germ of an idea in there. For instance, the author claimed its ableist, and thus presumably illegitimate, to complain about being forced to work in person while sick during a pandemic.

It appears that you are referring to this part of the essay:

There’s also an inherent ableism—and, quite frankly, selfishness—in able-bodied people complaining about having to work from home or, even worse, going to work when they’re feeling sick. People with chronic illness or disabilities are used to sacrificing work and socializing for our health; we know it’s frustrating. But when you decide to disobey directives and protocols from health officials, you’re not considering the health of those who are most at risk of both contracting and dying from coronavirus. Empathy is crucial in these times: As Anne Helen Peterson points out in an article for BuzzFeed, we shouldn’t measure our preparedness by how many rolls of toilet paper and cases of water we have, but by taking stock of how our actions affect others. “[O]ur habits, our compulsions, and our desire to keep living life completely as usual—because there’s (seemingly) nothing wrong with us—will have ripple effects that will almost certainly lead to other people’s deaths or significant illnesses,” she writes.

In the context of the essay, I read it as suggesting that there is ableism inherent in going to work in defiance of "directives and protocols from health officials," i.e. not staying home while sick, as directed by public health officials during the pandemic, which can be seen as the failure to consider how those actions could affect others that the author is discussing later in the paragraph. It is the 'habit, compulsion, and desire to keep living life completely as usual' because no personal risk is percieved that appears to be the ableism that the author is trying to highlight in that part of the essay.
posted by katra at 8:46 PM on May 17, 2020 [21 favorites]

The thing that resonated with me was the fact that all the work from home accommodations that were heretofore “not possible” for people with special needs became possible...literally overnight, once everyone needed it. I hope that resonates going forward.

On the other hand, I worked from home for 22 years (for reasons) and know that I missed out on a hell of a lot of opportunities for skill development. I found WFH sub-optimal and feel weird being told that it's ableist to have that opinion.

I wish a bigger deal was being made of the hundreds of millions of people still having to work in food and hardware retailing or delivery, who have elderly parents at home who they are trying to protect. I wish the talk show hosts on YouTube weren't constantly talking about us all being stuck at home...because lots of us aren’t.
posted by bonobothegreat at 8:53 PM on May 17, 2020 [66 favorites]

Every time a news anchor prefaces a story about preparedness by emphasizing that COVID-19 has mostly affected the elderly and immunocompromised, it sends a clear message that only some people’s well-being is valuable and worthy of real concern.

I've definitely run into a few conversations where someone asserted that the virus is no big deal because it "only affects old and sick people," as if anyone over a certain age or with a preexisting condition is entirely expendable.
posted by evidenceofabsence at 11:11 PM on May 17, 2020 [43 favorites]

I think the article covers a lot of ground, and it was written way back on March 13, 2020, when the stay-at-home orders were getting underway in the United States. Now that restrictions are increasingly being reduced and resisted, there seems to be a lot of ambient discussion that made it feel timely, and particularly the idea of a 'panic-tier system,' and how the (ableist) perception of a 'low enough' personal risk can create more risk for others, and particularly people who still have to work, or leave their home for other basic needs, like food or health care. As noted in the essay:

Working from home is not a possibility for a number of people, especially those who work in retail, the service industry, or healthcare. Though coronavirus will inevitably impact more than half of the U.S. population, some workers still have to leave their homes every day and interact with people who may have the virus. That makes it even more critical for those who are able-bodied and not infected to work remotely if they can. It’s their responsibility to limit social interaction; to look out for those who don’t have that option.

I keep using the qualification 'perception' when I talk about lower risk, because one of the things that I think gets lost when there is a laser focus on the need for 'high risk' people and their households to continue staying home as much as possible is that since the essay was published, there is more information available about the risks, e.g. C.D.C. data shows that nearly 40 percent of patients sick enough to be hospitalized were age 20 to 54 (NYT, Mar. 18, 2020), We Need to Talk About What Coronavirus Recoveries Look Like (Fiona Lowenstein, NYT Opinion, Apr. 13, 2020), Young and middle-aged people, barely sick with covid-19, are dying of strokes (WaPo, Apr. 24, 2020 / MSN reprint), etc. Welcome to the disability community, everyone. It can be frustrating and hard and scary, but I think if we work together, we will have a much better chance of fostering a more fair, accessible, and just society.

Also, on April 13, 2020, the National Employment Law Project hosted a webinar to present information regarding unemployment insurance, federal legislation, and what it means for workers during the COVID-19 pandemic, and it is available on YouTube. NELP also offers COVID-19 Resources for Unemployed and Frontline Workers on their website, including an overview of the three new unemployment insurance programs in the CARES Act. I encourage anyone concerned about health or safety risks related to their employment to seek legal advice (MeFi Wiki) to learn more about their options.
posted by katra at 11:21 PM on May 17, 2020 [14 favorites]

I absolutely think there is truth to the idea that what once seemed "impossible" (e.g., remote [class]work for immunocompromised people) suddenly becoming possible in the face of coronavirus put the lie to the original framing. It was always possible, the cost/benefit analysis in the eyes of those making that decision just didn't play out the same way. OTOH I kind of rankle at the idea that those complaining about the changes wrought by coronavirus don't have a leg to stand on are a little much. Let people cope how they need to cope. Sure, lots of privileged people are making noises they might cringe at later, but that's OK too. I'm not interested in your purity tests.
posted by axiom at 12:41 AM on May 18, 2020 [12 favorites]

My grades have suffered my entire life because of my chronic illness. I'm terrified of losing my job. I stayed in an abusive marriage to keep my health insurance. I've worked whilst bleeding through a miscarriage and was told that I'd "used my sick leave". I'm effing sick. If ONE MORE PERSON says that I'm in trouble for being born with a broken body...whelp...I'll just continue wishing this wasn't true.
posted by lextex at 3:24 AM on May 18, 2020 [15 favorites]

I work with old and sick people for a living, and it has been infuriating from the very start of this to hear the media but most especially social media (ie, just public opinion) be like “don’t worry it’s just old and immunocompromised and poor people who are getting sick or dying” because for freaking years I have known that what people are constantly effectively saying when they talk to me about my work is that those people are not really people, at least not anymore. The number of people who have straight up told me that my populations don’t deserve too much care, just, you know, the basics... makes my blood boil.

Dear young and able bodied people, I come to tell you that that shit don’t last.

Can’t tell you how many people get cognitive whiplash when they break their hip in their thirties or get a TBI or any other of a thousand ways that ‘young’ people end up in nursing homes and keep insisting that they don’t need to be here because they’re just not like that. You are like that, dude. And when you can use the toilet you can go home, but that’s why this is called rehabilitation. One of the greatest self sortings in society, along with race and gender, is health. And unlike those two, health is fluid.

My partner and I are both able bodied at the moment but we also both live with conditions that dangle disability above us at all times. There’s a wheelchair gathering dust in the basement because she needed a wheelchair for a bit last year. She doesn’t now but it’s not like we’re going to throw it away because who knows when one of us will need it again?

I am a pretty young person but one of the stupidest damn beliefs I know of is the thought that young people don’t get old. I tell my staff all the time that our work is pressing at the very least selfishly because we are building the world that we are aging into. And it’s so widespread! I made my doctor promise to stop telling me how young I am when I talk about preparing for aging because I KNOW I’M 34 BUT I WON’T BE FOREVER and I know for a damn fact that if my current musculoskeletal issues don’t improve they will be debilitating and I am not planning on dying at 60 or losing my mobility at 70. Think long term, people.

Unless you die young through accident or violence ageism and ableism will most certainly effect you. The disabled are not a fucking Them. They are Us.
posted by skookumsaurus rex at 3:47 AM on May 18, 2020 [112 favorites]

I think many able-bodied people just cannot handle not having their needs put first 100% of the time.
posted by Mauve at 3:58 AM on May 18, 2020 [19 favorites]

Part of our understanding of the virulence of a pathogen involves seeing who it makes ill. If young people with no pre-existing conditions are dying in widespread numbers, that would indicate the virus has mutated/strengthened. Young people are also more mobile, and more of an epidemiological concern than people in a nursing home (the essential workers staffing those homes, however, are a great risk). What language should we be using to discuss these issues that is less ableist?

This is an earnest question. I take comfort in knowing the virus hasn't mutated enough to take out 20-somethings because it means developing a vaccine or treatment is more tractable. I had honestly never considered discussing infectious disease in this way would be offensive.
posted by bluefly at 5:36 AM on May 18, 2020 [1 favorite]

If young people with no pre-existing conditions are dying in widespread numbers, that would indicate the virus has mutated/strengthened.

Cite?
posted by tiny frying pan at 6:23 AM on May 18, 2020 [8 favorites]

mikek, ableism, like white supremacy and patriarchy, is a systemic form of oppression. Thus, when you say

"the author claimed its ableist, and thus presumably illegitimate,"

you miss the point that the impact of our actions can be ableist, even if we have no bad intentions and even if we are not wrong that some particular set of circumstances is having a negative impact on us.

Ableism isn't about being bad people who hate people with disabilities, it's about a system that we all (especially the temporarily able-bodied) play into with actions that seem perfectly rational. Calling the police, using SATs, preferring for promotion the man who didn't have to take parental leave during his "most productive years", etc.

Defeating ableism doesn't just mean being careful about how we frame problems, but it does mean that. Framing problems can feed into systemic oppressions, and that is, I think, what the author is discussing here.
posted by allthinky at 6:40 AM on May 18, 2020 [23 favorites]

"Yep. Good luck talking about it with abled body people though."

I have had to actually say "I don't mind you complaining about this—because it sucks—but don't ever again tell me that I don't understand how difficult this is because I live like this anyway."
posted by Ivan Fyodorovich at 6:50 AM on May 18, 2020 [21 favorites]

I found WFH sub-optimal and feel weird being told that it's ableist to have that opinion.

The article isn't saying it's ableist for you to have that opinion about your own work from home experience, it's saying that it's ableist to believe that work from home is sub-optimal for EVERYONE.

A friend of mine had to quit her job last week because the county government here is taking an aggressive, punitive stance against work from home.

A student of the university I work at recently posted on reddit that our campus should open back up because "Covid isn’t a huge deal for healthy young people." No recognition at all that most of our faculty are over 50 and most of our staff (and plenty of our undergrads and grad students ) are over 30.

I think the article covers a lot of ground, and it was written way back on March 13, 2020

The time dilation effect had me feeling like this article was written a few years ago in some ways.
posted by See you tomorrow, saguaro at 6:56 AM on May 18, 2020 [16 favorites]

I was poking around on the site that's home to the article in the Doordash fpp. It's pretty interesting, but I came across this, and, well:

"Since the epidemic, every time I’ve gone out for a run, at least one or two people have yelled at me on the street to put on a mask or stay away from them. On the one hand, I understand. I am moving around a lot, exhaling heavily, lots of bodily fluids and droplets are flying around. On the other hand, it’s frustrating because study after study shows that outdoors is much safer than indoors and running with a mask just sucks."

Most of the articles written about distancing are written for people who aren't in high-risk categories, like this post from Vox that's titled Why You’re Unlikely to Get the Coronavirus From Runners or Cyclists, which eventually adds the caveat "unless you're in a high-risk group." Outdoors is safer than indoors. It's also safer for some people than others.

As a result, some people think their decisions about sucky masks are trivial, when, in actuality, they're making a decision not just for themselves but for other people. I have an autoimmune disease that makes me high-risk. I'm fine now but I'm likely to have a rough case of COVID if I catch it, and I'm supposed to be extra careful about distancing. When people decide to forego masks to engage in an entirely voluntary activity it impacts my ability to leave the house whatsoever, and to do things like buy groceries every few weeks or see the sun.
posted by evidenceofabsence at 7:46 AM on May 18, 2020 [24 favorites]

the virus hasn't mutated enough to take out 20-somethings
There are people in their 20s who have diabetes, or heart conditions, or are on immunosuppressant drugs who get kind of erased when people talk about how all young people are all safe.
posted by evidenceofabsence at 7:54 AM on May 18, 2020 [23 favorites]

There are healthy 20 year olds dying of covid related stuff all the time, as well. It is happening.
posted by tiny frying pan at 7:59 AM on May 18, 2020 [6 favorites]

Allthinky, I understand that the impact of actions can be ableist even if the intention isn't. But in my opinion this piece didn't do enough to show that. For example, it seemed to be creating a binary of disabled/not disabled, ignoring that many people with disabilities do in fact, have to work, and disproportionately work in fields where they have lower pay and less autonomy, and are disproportionately harmed by capricious rules such as those requiring one to physically attend work even while sick, in the middle of a pandemic.
posted by mikek at 8:27 AM on May 18, 2020 [1 favorite]

Abled fragility: n. 1. when able-bodied people just cannot handle not having their needs put first 100% of the time.
posted by katra at 9:14 AM on May 18, 2020 [10 favorites]

the virus hasn't mutated enough to take out 20-somethings
It's been interesting viewpoint from my house. My roommate is 27, and was diagnosed with Chron's disease late last year, it nearly killed him. I've talked about him before, but for the purpose of this thread i'll just summarize that he and I have lived together for years, and he's financially dependent for me.
Anyway, isolation for him has been worse than for me - I still have to go to work, and I do the grocery shopping. People's actions are more of a threat to him than to me. But we've both noticed that life hasn't much changed since the stay at home order was put in place. I was recently able to get a car, but before that, he and I were without transportation for years. Public transit here sucks. And, with us both being lefty gays, there's not many friends in our area. We're constantly broke, having to care for 2 people on one salary. For months at a time, our lives would be: he stays at home, tries to do chores and help around the house. I go to work, come home, we eat dinner together, we go to bed, wake up the next day and do it all over again. The only people i'd see for months at a time were coworkers or cashier at the grocery store And that's just how it was. Occasionally we'd get the money to see friends by splitting food at a pub or something and borrowing my sister's car. Sometimes our overworked, underpaid millennial friends would have a night off and come see us. But, for the most part, our lives were home-work, sleep, repeat.
Anyway, people who live in poverty/have chronic/untreatable mental illness (like me) and people who are physically chronically ill, we have a lot in common in our experiences, and we need to band together and speak up for each other because it's hard out here is what i'm saying.
posted by FirstMateKate at 10:17 AM on May 18, 2020 [28 favorites]

What language should we be using to discuss these issues that is less ableist?

There is no such language. You just get out there IRL and try to form some genuine relationships with older people and with more vulnerable people.
posted by polymodus at 11:57 AM on May 18, 2020 [2 favorites]

What language should we be using to discuss these issues that is less ableist?

In the context of the part of the essay highlighted for this thread, ableist/ageist/racist/fragile language includes:

When you try to reassure another person by saying “Don’t worry, it only affects [insert marginalized population here]”

This is an even more ancient article that also examines ableist/ageist language and the potential impact: ‘Real people won't die’: Rhetoric around who is at risk of coronavirus infection sparks debate over ageism, ableism (Julia Mastroianni, March 3, 2020, National Post / MSN)

“For many people, their concern begins and ends at their front door. If they view this disease as something that is insignificant and of little risk to themselves, they’re less likely to take the appropriate measures to keep from spreading it.”

mikek, I'm sorry the essay didn't convince you that there is no binary here, because I think one of its key points is about the need to protect the community from ableist assumptions that help justify actions that create additional risk for those who did not make those choices.
posted by katra at 1:05 PM on May 18, 2020 [9 favorites]

"Disabled are not them, they are us," is such a good way to put it. Sooner or later, it's all of us.

Which is not to say that everything is the same for everyone. "Us" is a huge tent, and it gets messy. Someone is gonna be fine with one term and hate another, and a different person will feel the exact opposite. Some people won't consider themselves disabled, and other people will think of disability as core to their identity. People will have all kinds of conditions and combinations of conditions, and, as a result, all kinds of unique and overlapping needs. This can be true even within a single condition. If I had a worse case of my autoimmune thing or was medicated for it, I wouldn't be able to leave the house at all. My crankiness about unmasked joggers is a function of the privilege of being able to occasionally go outside.

All of that said, the best we can do is acknowledge that people have different lived experiences and to try to listen to folks and be considerate of their preferences and needs. It's not always going to be easy and sometimes people are going to be frustrated or angry or ungenerous. We just have to do the best we can.

Oh, and speaking of "us": when it comes to COVID, we aren't talking about a vanishingly small minority of high-risk people. According to this analysis almost 40% of Americans are in a high-risk category. In at least eight states, that includes over 25% of people under the age of 65.

It really is "us." Taking care of each other is the only way we can take care of ourselves.
posted by evidenceofabsence at 3:39 PM on May 18, 2020 [15 favorites]

(I feel like, if there is a binary, it's "people who have to deal with some bullshit" vs. "the people who do not have to deal with that particular bullshit." That distinction is important, but there are many and multiple kinds of bullshit and people's exposure to a particular strain of bullshit can change, so it isn't exactly a simple us vs. them.)
posted by evidenceofabsence at 3:50 PM on May 18, 2020 [3 favorites]

But what if, if only as a thought experiment, we're all 'disabled' now? What if we all share the health risks equally as a community and have to act accordingly to protect each other from an equally distributed risk of harm? What if we are all in this together to protect those who have no choice but to leave their home for essential work and needs, however that gets defined? What if our society had to confront this reality and start making structural changes to adapt to a broadly-distributed disability? What kinds of 'reasonable accommodations' could we expect? Perhaps universal basic income and health insurance, similar to how SSI, SSDI, and Medicare currently exist for disabled and older people? A serious investment in distance education? What else could we do, if segregation, now, tomorrow, and until a vaccine is widely distributed, is not the answer, and if we instead operated as if segregation is a violation of fundamental rights?
posted by katra at 4:16 PM on May 18, 2020 [4 favorites]

what if, if only as a thought experiment, we're all 'disabled' now?

If other disabled people have the same visceral reaction to this statement that I as an autistic person have to the suggestion that "we're all a little bit autistic", the answer is NO and it's insulting to suggest it. While we're all now dealing with pandemic-related health risks to some extent or another (the rich and privileged are doing so less than others), it's simply not true to say that we're all "disabled" now. There are real, significant differences between the kinds of challenges faced by people with ongoing disabilities vs what otherwise-generally-healthy-and-abled people are facing during this time.

I recognize the value in the message that we all need to pull together, especially to protect the more vulnerable among us. But it's simply not realistic or accurate to say that "we're all 'disabled'".
posted by Lexica at 4:56 PM on May 18, 2020 [8 favorites]

If other disabled people have the same visceral reaction to this statement

I appreciate the response, and maybe it would help if I offer some context. I'm an attorney, although not currently practicing, but my experience includes legal aid and employment law, and I tend to think and read a lot about civil rights and constitutional law, which influenced the framing of my comment - for part of my comment, I was using 'disability' for a legal meaning that translates across a variety of contexts, but also because it can be a shorthand for a condition that limits an ability to participate in society. This thread was framed as a discussion related to ableism, so I'm trying to challenge the idea of a binary during the pandemic that seems to foster a real risk of harm, both to individuals who think they are 'safe' or 'safer' and to others in the community.

Right now, I'm suggesting that all of us are operating under a condition that limits our ability to participate in society, even if some don't percieve it, because there is risk that is broadly distributed to the entire community. I'm also suggesting that if we all recognized a broadly-applied 'disabling' condition, then we could develop policies, such as UBI and universal health care, and other structural supports that disabled people and others have been long been advocating for, but now also to promote community health and safety in the midst of an unprecedented public health emergency.

For about ten years or so, I was walking around with an increasingly large brain tumor, that I was fortunate to discover and have removed in emergency surgery about two years ago, but it also left me with titanium plates in my forehead that create an increased risk of ocular infection, as well as refractory hypertension, a seizure disorder, and other 'high risk' conditions that I can hardly access medical care for during the pandemic. As a matter of medical fact, I am at greater risk of worse outcomes if I contract the coronavirus.

I have thrilled at the possibility that WFH options might become more widely available, even while recognizing that it is a major adjustment and can have a variety of drawbacks. I also feel extraordinarily blessed to have SSDI and other government benefits - there are millions of people right now who can't or shouldn't be working, and yet they don't have access to steady income, health insurance, and nutrition support like I do. I feel like I have been watching so many people experience the whiplash of suddenly becoming 'disabled' (in the sense that their ability to participate in society is now far more limited) without many of the supports I have been able to acquire due to my recognized disability. I also tried so hard to return to work and 'reopen' my economy, but had grand mal seizures soon after, so maybe I'm sensitive to what feels like a metaphor when public health officials like Fauci warn against reopening too soon.

So I am questioning why we need to accept the premise that "otherwise-generally-healthy-and-abled" people don't have the same challenges right now. Why aren't the limitations shared, and why aren't the public health experts who continue urging us to stay home as much as possible being listened to? I think we could consider alternatives if we approached this public health emergency without the assumption that some people have to be segregated and further 'disabled,' while others are granted a privilege to increase the risk of a surge of infections, and place essential workers, hospitals, and the community at greater risk.

I really do appreciate the feedback, because I've been thinking a lot about this and trying to figure out how to talk about it in a constructive way. Ultimately, I'm trying to find a way to reframe the discussion of individual and community risk so ableism doesn't undermine individual and community health and safety.
posted by katra at 7:00 PM on May 18, 2020 [10 favorites]

evidenceofabsence and lexica, I really appreciate you pointing out that we can get into murky waters of identity and privilege when we talk about disability; there is an enormous amount to unpack and understand about disability and identity and no sharp borders. There are definitely huge phenomenologicals difference between the experiences and identities of someone who has been, say, paraplegic from childhood from a spinal cord injury, someone who develops multiple sclerosis in adulthood, someone who has suffered a moderate traumatic brain injury, and someone who has suffered a major hip injury followed by surgery and rehab. I think independence, visibility, extent of effect on daily life, and possibility of change (recovery or progression) all are such important factors that we can't really think about disability on a spectrum from Able Bodied (and who gets to decide what that means?) to Disabled, but rather as a complex network of intersectional experiences and perceptions. It gets ever deeper when we start to consider the normative biases we bring to the table, and when we consider the tremendous contributions to philosophy and sociology that the Blind, Deaf, and Neurodivergent communities have brought to us. Clearly there is a impactful difference between the hard-of-hearing and the Deaf, and frankly people who are not Deaf (I am not hard-of-hearing, deaf, or Deaf) should not presume to understand much of anything on that line. The concept of disability is hopelessly rooted in ableism, as we define it on our own understanding of 'normal'. The neurodiversity, Blind and Deaf cultures all come to mind as movements that have pushed back hard against being defined by our standards. It's like there's this base assumption that There is This Way to Be Human, and we bake it into our cultures and lives and minds, and a group of people work hard to say, no, I am not that way, and I am human, and eventually we kind of give in, but we act surprised every. fucking. time. I really wonder when we'll just be okay saying "humans are humans."

Anyway the whole point of that ramble is to say that while disability is freakin' complicated, we don't have to unravel it all to make the world better for people who may be in that category, and the neat thing is, it tends to improve things for everyone.

Accessible design is just plain good design, because it makes things better for everyone. Just because someone has the physical capacity to overcome a barrier doesn't mean that barrier should be there! The stereotypical example (and one that I talk about all the time, so apologies if this is basic stuff for you) is sidewalks and crosswalks. The curb cut effect (lots of citations in link) shows us that sidewalk ramps help not only people who couldn't possibly get up a curb without them (wheelchair users (nb not all wheelchair users)) but also people with strollers, grocery carts, and just freaking feet. I mean, I think we would all agree that long distance runners are able bodied, and I think long distance runners would probably agree that a well-maintained, wide, smooth sidewalk with well-marked crosswalks and curb cuts are better to run on than narrow sidewalks all torn up or no sidewalks at all.

What does universal design have to do with Covid-19 recovery? A world that's better for the people most at risk is a world that will be better for all of us. Better access to handwashing, better sanitation in public places, social acceptance of distance preferences, a social awareness of 'higher risk' and appropriate behaviors... it's just a better world for everyone.
posted by skookumsaurus rex at 7:22 AM on May 19, 2020 [9 favorites]

I don't know what you call it when people have patronizing like their clients are children attitude

Infantilize? We do experience a form of discrimination that other marginalized groups have also previously faced and continue to challenge, and it has required awareness campaigns and protests and lawsuits and legislation and constitutional amendments and getting out the vote to bring change over generations. But change happens. However, for marginalized groups most at risk due to the pandemic, it does feel urgent to figure out ways to communicate effectively about our need to be included as equals in the cost/benefit analysis.
posted by katra at 12:50 AM on May 20, 2020

So I work in health care management (only for a couple years now, and only recently with any real power), and many of the people I serve are disabled either through aging, injury, or otherwise; my work is specifically with complex patient populations so you'll lots of things all at once. And I have some things going on with my body and my mind that have been or can be debilitating, but I do not want to claim a disabled identity because I am very passing and very privileged pretty much altogether. I am not the Us in Nothing About Us Without Us, at least until/unless something changes.

I would appreciate any links or guidance (while not saying that this is on others to do the work for me) that can point me to best practices in disability inclusion and awareness. As far as people living with dementia goes, I feel pretty up to date on grassroots advocacy, and work hard to have individuals lead their care as able, and try to reach out and work with activists who are living with dementia. But in terms of other disabilities, I can solicit input from the people who are encountering barriers and try to include them, and I can read design guides, but I've never had a staff member who uses a wheelchair, for example. I don't want to say "I guess I'm doing my best" and I don't want to co-op language like Kanata is talking about. Are you aware of any organizations that do consulting or advocacy for that kind of future-focused inclusion work? I am thinking hard about how to build better systems as we restructure our models in the wake of COVID-19, and I would love to bring radical accessibility to the table as a pillar of our future. I'll work on my own research based on the thoughts that this thread has brought me, and please MeMail or respond if you have resources- or if you think I have my head up my ass with this question.
posted by skookumsaurus rex at 2:25 PM on May 20, 2020 [2 favorites]

But You Look Fine: A Reading List is focused on education environments, but there are broadly applicable concepts in the links and the FPP's discussion, including from the Vanderbilt University Center for Teaching that begins with the premise, "if a university were to adopt a social or cultural perspective on disability, the goal would be to increase accessibility for all students, regardless of whether they have a formal diagnosis. The focus would be on accounting for human variation by design," and includes links to a wide variety of additional resources. Both the FPP and comment are posted under my previous username, and the social and cultural models of disability have influenced my perspective on the issues raised in this thread.

For consulting, I am aware of the Job Accommodation Network (JAN), which offers a Workplace Accommodation Toolkit for employers, as well as free consulting services for all employers, regardless of the size of an employer’s workforce. There is also the ADA National Network, which offers informal guidance on the Americans with Disabilities Act (ADA) and other disability-related laws for "business owners, architects and designers, representatives of state and local government agencies, employers, people with disabilities and their family members, service providers, educational entities, and others interested in the ADA." Both of these resources and additional resources that may be able to offer assistance are listed in the Disability section of the MeFi Wiki Get a lawyer page.
posted by katra at 3:39 PM on May 20, 2020 [8 favorites]

Thank you!
posted by skookumsaurus rex at 7:50 PM on May 20, 2020 [1 favorite]

I think Ed Yong's recent piece in the Atlantic, America’s Patchwork Pandemic Is Fraying Even Further relates to this discussion in several ways, including, with emphasis added:

Vulnerability to COVID-19 isn’t just about frequently discussed biological factors like being old; it’s also about infrequently discussed social ones. If people don’t have health insurance, or can afford to live only in areas with poorly funded hospitals, they cannot fight off the virus as those with more advantages can. If people work in poor-paying jobs that can’t be done remotely, have to commute by public transportation, or live in crowded homes, they cannot protect themselves from infection as those with more privilege can.

These social factors explain why the idea of “cocooning” vulnerable populations while the rest of society proceeds as normal is facile. That cocooning already exists, and it is a bug of the system, not a feature. Entire groups of people have been pushed to the fringes of society and jammed into potential hot zones. [...] This point cannot be overstated: The pandemic patchwork exists because the U.S. is a patchwork to its core. New outbreaks will continue to flare and fester unless the country makes a serious effort to protect its most vulnerable citizens, recognizing that their risk is the result of societal failures, not personal ones. [...] Imagine if the energy that went into debating the merits of hydroxychloroquine went into ensuring hazard pay, or if the president, instead of wondering out loud if disinfectant could be injected into the body, advocated for health care for all? “We have decades of social-science research that tells us these things work,” says Courtney Boen, a sociologist at the University of Pennsylvania. “It’s a question of political will, not scientific discovery.”

posted by katra at 3:30 PM on May 23, 2020 [6 favorites]

Ed Yong's recent Atlantic article also returns to this theme: COVID-19 Can Last for Several Months (Jun. 4, 2020)

The notion that most cases are mild and brief bolsters the belief that only the sick and elderly need isolate themselves, and that everyone else can get infected and be done with it. “It establishes a framework in which ‘not hiding’ from the disease looks a manageable and sensible undertaking,” writes Felicity Callard, a geographer at the University of Glasgow, who is on day 77. As the pandemic discourse turns to talk of a second wave, long-haulers who are still grappling with the consequences of the first wave are frustrated. “I’ve been very concerned by friends and family who just aren’t taking this seriously because they think you’re either asymptomatic or dead,” said Hannah Davis, an artist from New York City, who is on day 71.

[...] well before the pandemic, the health-care profession had a long history of medical gaslighting—downplaying a patient’s physical suffering as being all in their head, or caused by stress or anxiety. Such dismissals particularly affect women, who are “less likely to be perceived as credible witnesses to our own experiences,” said [Vonny] LeClerc[, a Glasgow-based journalist]. And they’re especially common when women have subjective symptoms like pain or fatigue, as most long-haulers do. When [Paul] Garner wrote about those same symptoms for the British Medical Journal’s blog, “I had an unbelievable feeling of relief,” Callard, the geographer, told me. “Since he’s a guy and a professor of infectious disease, he has the kind of epistemic authority that will be harder to discount.”

[...] Perhaps COVID-19 will similarly galvanize an even larger survivor cohort. Perhaps, collectively, they can push for a better understanding of neglected chronic diseases, and an acceptance of truths that the existing disability community have long known. That health and sickness are not binary. That medicine is as much about listening to patients’ subjective experiences as it is about analyzing their organs. That being a survivor is something you must also survive.

posted by katra at 12:45 PM on June 16, 2020 [2 favorites]