In the beginning of 2020, going to the art gallery would have meant finding a Saturday with a couple of free hours and – going.
Now it’s a lot more complicated.
We’ve wanted to go since it reopened in, I think, July? And kept saying: this week, if you’re feeling up to it; this Saturday, if you’re not in too much pain; maybe next weekend, if this flare eases up. And it just never happened. Every available Saturday was instead spent at home in pain, or maybe with a quick trip to the local Indigo, with its lovely accessible parking spot right near a fantastic curb cut and an automatic door with no lip, enough space to walk around inside, and a ramp.
Yes, we have local independent bookstores that are beautiful and I love to support them; but the accessible parking spots are nowhere close by, so we have to budget for the pain of the walk there and back, not to mention navigating narrow aisles, and maybe no automatic door. Indigo hurts less, so Indigo is where we go.
Sylvia Nickerson
Even with the pain medications, even with the steroid injections, even with physio for years, every day is a struggle with pain that sometimes eases up but never completely goes away. Lately physio walks have been five minutes each way, and every second of those five minutes is a push. We might get half a block. Cracks in the sidewalk bring a cry of pain. A bumpy curb cut is a barrier requiring effort to navigate—picking the walker up, putting it down, picking the walker up again, putting it down again. Any kind of slope is a challenge. Even a “code” slope of 1” change in height per foot in length. Frances works harder to put one foot in front of the other than anyone else I know. We budget those steps, carefully. In-person school days requiring saving up the day before, and recovery afterwards.
She had a couple of good days. This morning we took stock; pain was low, energy was high. We went to the art gallery. We chose an accessible parking spot as close to the doors as we could get, asked about the elevator in advance, planned our route to minimize retracing steps. We went slow. We stopped and sat down when needed. And we checked in frequently to make sure that she had enough left in the pain budget to get back to the car. We might have cut it a bit fine; getting back to the car was hard, but Frances loves the Bosch Bus and didn’t want to tear herself away.
I don’t talk about that much, maybe not as often as I should. Because look, we grew up in the same world, the same culture, and I know how you think. You don’t believe that needing to budget dollars means a life is worthless, but budgeting pain or steps isn’t the same to you, at all. This would fit into the slot in your head that says “disabled lives aren’t worth living,” that wants to find inspiration, or a cure, or something for YOU in this story. But it’s not there. Frances’s life isn’t for you.
Meanwhile, if I talk about the beautiful afternoon we had—budgeted steps and all—about how much we loved the art, the conversations about brush stroke and texture and colour and composition and line and meaning—you’ll decide everything is fine, after all, and no more accommodations need to be made. That there is no problem to solve. Never mind that we’re in this position largely because a doctor decided she hadn’t been in pain for enough years to earn hips that work, or that he didn’t believe her reports of pain, or that other doctors got so carried away with the need for diagnosis that it took a threat to go to the press before they started to work on her quality of life, or that yet other doctors were so convinced that her height was a problem that needed solving that they began acting directly against the advice of other medical specialists to find some answer that would make her taller. (Frances is the tallest person in the world with her specific diagnosis.) And never mind the rounded curb cuts that no wheels can manage, or the uneven sidewalks, or the thousand other little barriers.
So I talk about the beautiful time we had, mostly, and not about the pain, or the budgeting. Between the rock of confirming your preconceptions about disability and the hard place of enabling your ignorance, I’ve chosen the hard place.
It’s common for activists —against racism, against sexism, against transphobia, homophobia, climate change– to be very free about demanding that others be vocal about the issue in question. Silence is violence, etc.
And the most I’ve seen most do about discrimination against disabled people is add “and the disabled!” to the end of the list of oppressed groups to perform wokeness. Yep, they’re kind of peripherally aware of ableism, and generically support accessibility in a hazy mostly ignorant sort of way, but they’ve never done a single fucking thing about it. Even friends will tell me they love my kid, but seem totally on board with a world that keeps her in pain and in my living room.
I’m kind of tired of being asked to build a better future that my kid won’t be able to live in. I’m done, I think. You go on and build whatever kinds of movements or futures or causes you want to. If you haven’t figured out how people like Frances fit into it, I’m not interested.
At any rate, we had a beautiful afternoon. The art was gorgeous. Well worth budgeting steps for. The curb cuts were a thing of beauty. The automatic doors made our day. The low padded benches everywhere made our stops easy and comfortable. There’s an airplane now at the Bosch Bus, and little parachuters. Sylvia Nickerson’s work was amazing, so much colour and passion and life. We’re so happy we got to see Michael Snow’s art and appreciate in person how wide-ranging and versatile he is. Thank god for wide open rooms and even floors. I think if the art gallery figured it out, you can too.
This week we got the news officially: those of us working from home will continue to work from until at least January 2021.
Which includes me. Which means, at a minimum, I will have no need for tailored work clothes until at least late winter.
I’m also not social dancing. Some classes have started up again, but with asthma and diabetes, and Frances’s surgery coming up, it’s just a risk I feel I can’t take. When there’s a vaccine, when we’ve both been vaccinated, and when she’s recovered from her surgery, I can get back to dancing.
What with March-May’s flurry of pandemic sewing, I have few gaps in my work-from-home wardrobe at the moment. I’m sure I’ll still make myself some things, but not often, and certainly not fancy. I know lots of you love to wear dresses at home, but not me, not with our little puppy and the aura of shedding black fur that hovers around her like Pigpen’s cloud of dirt. My work-from-home clothes are constantly laundered. They need to look ok on zoom calls, but they can’t be too precious.
But I am going to have a sewing challenge this fall, and I don’t even know where to begin: Frances will need clothes for her recovery. We don’t know if it’s going to be a few weeks or several months; we don’t know if she’ll be up and walking around some in a week or forbidden to use her feet for three months. Given supply chain issues from covid, the latter seems more likely, and we’re starting to make some plans for things like making the house accessible and how to get around to follow-up appointments and what-not, but she is also going to need clothes.
But what kind?
I’ve already been tackling some pre-surgery accessible clothing: pullover knit dresses, mostly, since pants and shorts are becoming harder and harder for her to put on. I’ve got some tunics planned for the colder weather, and hoping that with long socks, she can be comfortable and warm.
After surgery is a whole different thing. I’m looking at websites that sell clothes for hip replacement surgery recovery for adults, and they’re full of things like side zippers on pants and wrap-backs on shirts, and I can see how some of that is useful, but is it useful when you are in a wheelchair and not allowed to put weight on your feet? Or is it useful for the standard kind of recovery? There’s almost nothing for or about kids, and all that’s out there for hip replacement with any kind of skeletal dyspalsia is “it works great when you have custom prostheses!” Which we probably won’t have, thanks to covid, and which is why I’m looking for information in the first place.
This is one of the downsides in having a literally 1/750,000,000 kid: there are no templates and there is no map. I don’t know what she’s going to need. All I know is that whatever’s available in the stores isn’t going to fit, so I’m going to have to make it based on patterns that will need substantial altering. Which means I need to get started. But on what? How much is Frances going to be able to use her hips? When will she be able to help again with getting things on and off, and in what way? All of the adaptive clothing websites make assumptions about recovery and function that are likely not to be true for her.
I’m still solidly in the floundering stage of this sewing project, as you can see. I’m not sure how much I’ll be writing about it here; I don’t imagine it’s too exciting to read a bunch of iterations of “I tried this, and it didn’t work either,” plus it’s of pretty limited interest to 749,999,999/750,000,000 of you. But we’ll see.
On the not-sewing side: This has never actually been a sewing blog (the name should be the first giveaway), though I’ve always written about sewing here to some extent. I’m equally impressed and confused by people who have single-interest blogs: how do you do it? Doesn’t the sewing, the mothering, the working, the volunteering, the creating, the social barriers, the lay-offs, the elections, all get tangled up together? It’s one life; how do you cut it off into little pieces? Is it a marker of privilege, to be living a life where you can chop off bits and act like they don’t influence each other? I sew clothes because it’s how my kid gets something that fits and doesn’t cause pain, and I sew clothes for me because I need to spend a lot of time at home available in case she needs me and it helps me cope. Ableism, mothering and sewing are all the same thing for me, and have been for over 15 years. When I try to pretend otherwise, I just feel like a liar.
Basically, I’m not sure what I’m going to be writing about, but it’s probably not going to be a whole lot of sewing, and certainly not sewing for me. I’m reading a lot (I finished my 101st book for 2020 yesterday), so there may be more books, and I’m doing a whole lot of thinking about what it means to build a career on making a better world for people who insist that you leave your kid behind.
(She has no community. Do you understand that? There is no room in this world that she can walk into, and be surrounded by people who share her experiences and perspectives. Your community(ies) may be based on privilege or disadvantage or some combination, but I guarantee you that having a group of people you can talk to who understand your life and where you’re coming from is a privilege all on its own that Frances will never have. Look at the sewing chunk of this post: getting a double hip replacement is hard! Do you know what makes it a million times harder? Having no idea what to expect because there is no medical record of anyone like you ever having had a hip replacement in human history.)
(Scratch that: there is a brand new medical study alluding to one person with Frances’s condition having had a single hip replacement in their twenties. So assuming we can find the operating surgeon and connect them to Frances’s, there might be a single case study to go on. And there are now 16 diagnoses so I guess Frances is officially 1/500,000,000.)
I don’t know where I’m going with this, except that what’s likely to preoccupy me for the rest of 2020 will be my kid’s hip replacement, both in logistical terms and in more sociological terms. How much of it shows up here I can’t say, but I’m willing to bet my life savings that I’m not going to be writing a lot about dress patterns.
To begin with: I can’t claim to be unbiased or a disinterested observer (but, no one can). No one reads 108 books about climate change without deep investment, and most of the contributors in this collection I am already familiar with; if not in books, then in newsletters, articles, scientific papers, youtube series, podcasts, documentaries, or TED talks. All We Can Save is practically a roll-call of 2020 Climate Heroines (Katherine Hayhoe! Dr. Wilkinson! Dr. Johnson! Amy Westervelt, Dr. Marvel, Adrienne Maree Brown, Mary Anne Hitt, Rhiana Gunn-Wright, Emily Atkin, Varshini Prakash, Susanne Moser, Mary Annaise Heglar, Leah Stokes! etc.), and I was excited enough to read it before my NetGalley request was approved (so yes, I received a free electronic copy in exchange for a review; and then I bought a copy in actual paper because it’s really good and ebooks give me a headache).
There was really no chance I wasn’t going to love it, and, spoiler alert, I do. The editors have done a great job in compiling climate perspectives that centre black and indigenous women climate leaders, and address everything from climate grief and staying motivated, through advocacy strategies and how to talk about climate change, through specific highly technical solutions like regenerative ocean farming and soil conservation techniques. The essays are interwoven with fabulous poems, by poets like Ada Limon, Joy Harjo, Mary Oliver, Alice Walker and Sharon Olds. Nothing is going to make me more likely to buy a book, statistically speaking, than the combination of amazing poetry and climate action. Add in some feminism and I’m done for.
For Those Who Would Govern (Joy Harjo)
First question: Can you first govern yourself?
Second question: What is the state of your own household?
Third question: Do you have a proven record of community service and compassionate acts?
Fourth question: Do you know the history and laws and your Principalities?
Fifth question: Do you follow sound principles? Look for fresh Vision to lift all the inhabitants of the land, including animals, Plants, elements, all who share this earth?
Sixth question: Are you owned by lawyers, bankers, insurance Agents, lobbyists, or other politicians, anyone else who would Unfairly profit by your decisions? Seventh question: Do you have authority by the original keepers of The lands, those who obey natural law and are in the service of the Lands on which you stand?
There’s a lot to love about this essay collection, and only one glaring disappointment.
To begin with, if by some chance you’re not familiar with at least half of the names in the contributors’ list, you’re in luck: you’ll get a beautifully written, elevator-pitch-length summary of their work, from Katherine Hayhoe’s advice on talking about climate change, to Rhiana Gunn-Wright’s work on the Green New Deal, Mary Ann Hitt’s work closing hundreds of coal plants, Emily Atkin’s climate journalism (see Heated), Adrienne Maree Brown’s Emergent Strategy, and more. If you want to know who is doing what on climate action and why, so you can figure out whose work to follow, participate in and promote: start here.
There were no bad essays, and many of them were just breathtaking. Pretty much every piece in Feel was a standout. Under the Weather (Ash Sanders) made me cry, and of course anything by Mary Annaise Heglar is wonderful (Home is Always Worth It).
From Under the Weather by Ash Sanders
Sarah Stillman’s Like the Monarch uses animal migration as a positive analogy for human migration and provides a beautiful counter-point to fascism and xenophobic rhetoric.
From Like the Monarch by Sarah Stillman
Heaven or High Water by Sarah Miller, previously published on Popula, is a hilarious and eye-opening first-person account of climate impacts on the Miami Beach real estate market. I didn’t necessarily expect to read pieces on mobilizing fashion models or the 1% to foster the revolution, but I enjoyed reading them.
None of this leaves a lot of obvious room for disappointment, but here it is, and it might not have been so glaring for me if I weren’t reading Care Work at the same time:
The book beautifully centres indigenous and black leadership, the importance of women, the need to build in class and income disparities and analysis, considers climate displacement from the global south, and in general considers thoughtfully and in depth every marginalized community but one: disabled people.
As a type 1 diabetic and a single mom to a disabled teen, that does sting. Worse, it didn’t have to be that way: many of the leaders they discuss struggled with health issues or disabilities of various kinds (Adrienne Rich had arthritis, Rachel Carson died of cancer, Audre Lorde had cancer and vision loss, Mary Oliver struggled with PTSD, Octavia Butler was dyslexic, etc.). Greta Thunberg is autistic, for heaven’s sake, and calls her autism a superpower. Chances are good that a bunch of this book’s contributors have disabilities or chronic illnesses, but you would never know it from the text. Both All We Can Save and Care Work discuss Octavia Butler’s Earthseed books, but only Care Work acknowledges and discusses that Lauren Olamina was disabled, and it was her disability that made her an effective leader:
What I’ve not often seen discussed is how Lauren Olamina, Butler’s Black, genderqueer teenage hero who leads her community out of the ashes and founds a new spirituality that embraces change as god, is disabled. In the book, she is called a “Sharer”: someone with hyperempathy syndrome. She feels everything everyone feels, and it’s often overwhelming in a way that reminds me of some autistic and neurodiverse realities.
To me, Butler’s Parable books are a Black disability justice narrative. Lauren often struggles with her non-normative mind, but it also gives her Black disabled brilliance. Her hyperempathy makes her refuse to leave anyone behind. It allows her to innovate, co-creating a resistance community and rebuilding it when it is destroyed.
For years awaiting this apocalypse, I have worried that as sick and disabled people, we will be the ones abandoned when our cities flood. But I am dreaming the biggest disabled dream of my life — dreaming not just of a revolutionary movement in which we are not abandoned, but of a movement in which we lead the way. With all of our crazy, adaptive-deviced, loving kinship and commitment to each other, we will leave no one behind as we roll, limp, stim, sign and create the decolonial living future.
I am dreaming like my life depends on it. Because it does. And so does yours.
There were so many natural opportunities to bring up disability and disability justice, and they were all overlooked. One of the essays, At the Intersections by Jacqui Patterson, discussed in passing one person with hearing loss and a few others with AIDS, as people who need care and assistance because of climate change, which is valid and true, but nothing in the book discussed disability or chronic illness in terms of leadership or contribution–despite Greta, despite the disabled writers quoted. I hope the editors have future editions in which this can be remedied, because as true as it is that disabled people are often overlooked in emergency response planning and exposed to much higher mortality risks from climate impacts and should be included on that basis, it’s also true that disability justice has a lot to offer climate activism.
As just one example, what would climate activism (and environmentalism and conservation work more generally) look like if we could release our cultural vice grip on cure as the only valid goal or outcome? Thinkpieces on the futility of our work, given that we’re past the point of being able to return our world to the pre-industrial condition of 1550 or pre-colonial condition of 1450, and the grief and difficulty of loving a broken world, allowing yourself to care about environments that don’t look like they used to, etc., are as common in green publications as kentucky bluegrass in a Canadian suburb, and about as worthwhile. Do you know who has grappled already with knowing that some things can’t be fixed, can’t be cured, and yet are worth loving, and offer lives worth living with lots of joy and community? Disabled people. Ask them (/us).
To restore a house that’s falling down or a tallgrass prairie ecosystem that’s been devastated is to return it to an earlier, and often better, condition. In this return, we try to undo the damage, wishing the damage had never happened. Talk to anyone who does restoration work–carpenters who rebuild 150-year-old neglected houses or conservation biologists who turn agribusiness cornfields back to tallgrass prairie–and they’ll say it’s a complex undertaking. A fluid, responsive process, restoration requires digging into the past, stretching toward the future, working hard in the present. And the end results rarely, if ever, match the original state….
…I circle back to the ideology of cure. Framing it as a kind of restoration reveals the most obvious and essential tenets. First, cure requires damage, locating the harm entirely within individual human body-minds, operating as if each person were their own ecosystem. Second, it grounds itself in an original state of being, relying on a belief that what existed before is superior to what exists currently. And finally, it seeks to return what is damaged to that former state of being.
But for some of us, even if we accept disability as damage to individual body-minds, these tenets quickly become tangled, because an original nondisabled state of being doesn’t exist.
Or not, but, you know, you’re suffering needlessly, and this will affect your work. Disability justice advocates have expertise and relevant skills for climate work, and it is such a shame that this otherwise very comprehensive collection didn’t take advantage.
If I could have given this 4 1/2 stars, I would have; I wanted to round it up to 5, but dammit, they left out my kid.
While chronic illness and complex medical conditions have been indisputably good practice for coping with uncertainty and restrictions during a pandemic, they have also had a significant downside, and that is: with medical offices and services shut down to restrict the spread of covid, our own medical conditions have become harder to manage.
My diabetes is not so bad; in fact, my blood sugar control is better on shots right now than it has been on the pump for many years, and I don’t mind virtual appointments at the moment, when that saves me so much money on gas, parking, and tolls.
But Frances’s condition has been, in a word, terrible.
The first few months were fine. The steroid injections in December were still at full effect in March and through most of June, and daily physio walks and exercises and medications were keeping the pain under control and her mobility high.
Then she injured her knee in June, just before the steroid shots wore off, and that began the most challenging few months of our lives.
She was in too much pain to stand up, too much pain to sit down; shifting her weight on the couch would make her cry out in pain. She couldn’t walk unassisted in the house; we didn’t have any indoor mobility aids and with everything shut down, couldn’t easily get one. The office that does steroid injections was shut down, and then had a large backlog to work through. Her referral to the hip surgeon from our last appointment in January was lost or never sent; then the surgery offices shut down, and when they opened up again we had to start over with calls to the last office to get a new referral and a new appointment. She could no longer manage stairs without help, including the two steps to our front door, leaving her effectively housebound (even with help she couldn’t get up and down those two steps without crying out); funding for the ramp had been put on hold due to covid. None of the companies offering ramps or custom shoes or any of the things she needs were open.
We were finally able to get her in for new steroid injections at the end of July, but they were not as effective as the ones from December, so we’re adjusting to a new normal: mobility no longer causes so much pain that she cries out at every step, but the combination of continuing persistent discomfort and the stiffness and seizing from so much enforced immobility makes it still extremely difficult to stand up, walk even a few steps without assistance, get up and down our small flights of stairs (our house is a split-level). We finally were able to get a new walker, smaller and more useful for inside our little house, but as I’m sure anyone who uses mobility aids can tell you, there is an adjustment period of learning how to use and control the new device, that relies on muscles being used in new ways and causes a different, new kind of discomfort. It’s better, to be sure, but it’s not problem-solved.
I’m basically spending my free time pushing to get as many services and supports as we can during this period where medical offices and services are open, in case there is another surge in the fall and everything shuts down again. That includes a recent surgery consultation, which has put her on the list for a double hip replacement–if everything stays open–this fall. The recovery period, of course, is affected by covid, as is everything else: she needs custom prostheses, ideally, but there are supply chain issues from the pandemic and they may not be completed or delivered in time. Which would mean using standard prostheses, requiring a different surgical process, and approximately 3 months in a wheelchair afterwards to recover (with of course the upside being that after that, her hips should no longer be causing her pain, and those hips should last for decades). All of the stress is making my blood sugar numbers bounce around like those little rubber balls sadistic parents put in birthday party loot bags. And Frances is struggling with the loss of her independence, as she now needs help to do many things she was able to do by herself before. This is HARD.
This is hard, and this was a cost imposed on us to control the pandemic. These are losses my kid has endured, and I have endured, to keep your family healthy and safe.
But that’s not the part I’m struggling with. The shutdown was manifestly not personal; our governments made the best decisions they could with the information they had to protect as many people as possible, including the health system my kid depends on so much. Many other families have made other sacrifices (to covid exposure, to the loss of jobs and homes and businesses, etc.); our family’s loss was the exponential increase in pain and concomitant loss of mobility and independence caused by the loss of health services. If it seems steeper than the price paid by most other families, I can admit that I’m likely looking at this through my own partial lens, and agree that most of us are suffering and 2020 has been a shit year.
And sure, there has been little to no media attention paid to kids and adults like Frances, who are suffering because of the loss of health care services; and yes, this reflects the unpardonably low status disabled and chronically ill people cope with and the discrimination against them. As I read recently in one book: Sure, in prehistory, infant and child mortality was much higher than it is today; but it was really only sick and disabled kids who died, so does that count as a loss?
They wrote it down. Someone published that. Others promoted it, and reviewed it in glowing terms that made no mention of its eugenicist core.
It pisses me off, as I’m sure you can imagine, but that too isn’t what I’m struggling with: I’m used to this. I hide my diabetes diagnosis during job interviews because I know it will count against me as a candidate; I hide my kid’s diagnosis as well. I’ve been laid off from jobs because of the number of medical appointments I attend with her. I cannot even pursue work that doesn’t include health insurance; her custom shoes cost $2k. I have no idea how parents with lower-paid, more precarious work manage this. This is not new; it infuriates me, but I have learned how to manage it through lots and lots of practice.
No, what I’m struggling with is how easily and how smoothly the supposedly pro-disabled social-justice advocates on the left have slipped back into eugenics as the economy reopens, and how stubbornly they’re clinging to it.
It looks like this:
Our provincial government is planning to reopen the schools. Some extra funding was made available to hire additional teachers to reduce class sizes, but certainly not in line with 15-per-class many medical experts were recommending. This concern makes sense to me, though I’m very skeptical that there are enough qualified unemployed teachers available to reach that goal, but what concerns me is the corollary to this: in order to reduce class sizes in line with that 15-per-class recommendation, you need a lot more classrooms. And where do you put them?
“Progressive” advocates say: other rooms in other buildings like community centres, or outdoor schools, like in the 1918 flu pandemic.
Community centres are enough of a problem: Frances’s school walker is kept at school, and can’t be transported on school buses, so she is unable to jet all over the city to these alternative school sites, and you know damned well that it’s not the well-off white abled students of two-parent families whose educational choices will be restricted to whatever’s available at the single site they can access. No. It would be kids like mine, or kids from families where there isn’t the funding or time to chauffeur them from community centre to campus to library and back again. No mention is made of this unequal access to education.
But as ridiculous as that idea is, outdoor classes are worse.
It is hugely unsafe to operate mobility devices on ice- or snow-covered surfaces. Even just a little bit of ice or snow can make the wheelchair or walker misbehave. Frances has been injured on her school yard in the winter before; she does not go outside at school in the winter anymore, except to the bus and back. Last year she missed a good chunk of her co-op days because the sidewalk between the school and the city bus stop was so inconsistently cleared. Her winter physio walks are a shitshow; it’s rare that we can get more than two houses from our own before the ice and snow on the sidewalk becomes impassable. And in case any of you have the notion that “inaccessible” means “inconvenient,” like a cupboard that’s out of reach, in this case it’s more like a permanently red light at a busy intersection with your town’s only grocery store on the other side. It means injury, and for a kid who already deals with terrible ongoing pain and physical damage from regular activities, “injury” might as well be a concrete wall topped with barbed wire.
What has the response been of these progressive social-justice advocates, who have been so outraged with the impacts on disabled kids of the policies of our conservative government?
Fucking crickets. At best. At worst, “well, but it’s only for a few months,” they say, or “wow, that’s a good point, we’ll send it to our committee!” TO OUR COMMITTEE. Because if the mom of a disabled kid tells you that it’s impossible to make an outdoor educational environment safe in winter for kids who use mobility devices (what the fuck are you going to do when it snows during the school day? Send out a plow and salter every time you get 1/2 cm, ALL DAY? You’d have to, or otherwise these kids wouldn’t be able to get to the god damned school building to take a piss), the answer is to give it to a bunch of well-intentioned abled moms to solve. In a couple of weeks. I mean, how hard can it be?
The overall tone is: It’s really so sad that Frances has been taking the brunt of our province’s pandemic response plans, but let’s just keep that up for another year or two. It’ll be totally different because it’s by the NDP instead of the Conservatives! Please don’t let your daughter’s life get in the way of our potential electoral advantage.
I’m so enraged I can’t even look at these people. I’ve deactivated my facebook, I’ve unfollowed some of them on instagram, I’m not responding to messages.
And then: why the hell am I devoting my life and career to the climate crisis, when society will not see that my daughter is a human being with the same entitlement to rights as their own children? Bringing it back to my last post: if you so strongly believe that your feelings (pandemic anxiety) are worth more than my kid’s life or well-being, why should I work so hard to save your kids, please tell me, when you clearly consider mine expendable?
(I know many others find themselves in this position too: racialized groups, LGBTQ, etc., often find themselves in the position of working hard to redeem a society that is trying to obliterate them. Really it’s amazing that anyone from a marginalized, outcast population ever manages to find the generosity to do world-building work.)
That is, in the world’s biggest nutshell, my state of mind in July/August when I began reading Olivia Laing’s Funny Weather: Art in an Emergency.
I am a lifelong Laing fan from her incredibleThe Lonely City, which is less about how lonely cities often make us, than it is about how loneliness, though it feels so isolating and unique, is actually so common today that it could populate cities (and does). She has an enormous knowledge of artists from all periods, and a perceptive and fascinating analysis of their work and its connection to the issues she analyzes, and she has a consistent, deep and abiding analysis of the interconnection with stigma, marginalization, and abuse. If the pandemic has left you concerned about social isolation and its impacts, there are worse places to begin than The Lonely City; I highly recommend it.
Funny Weather is a series of reviews and essays inspired by Eve Sedgwick’s early 1990s essay, “Paranoid Reading and Reparative Reading, or, You’re so paranoid, you probably think this essay is about you.” Loosely, it defines paranoid reading as gathering information to figure out how fucked up everything is, how it got fucked up, the various cultural forces encouraging the up-fucking, and who explicitly is to blame. An excellent recent example is the brick-wall-head-bashing claim that the Doug Ford government is intentionally putting forward a knowingly awful return-to-school plan to destroy public education in this province. Never mind that the Ontario plan is as good or better as the plan in any other province, including those headed by Liberal or NDP governments; never mind that there’s no evidence of such a conspiracy; never mind that other, much more progressive countries with generally better school funding have created similar plans and enacted them without catastrophic consequences; nope! The conservatives are trying to destroy the teacher’s unions. It’s ridiculous. You don’t need a conspiracy to explain an outcome when general incompetence and an ideological focus on cost-cutting above all other outcomes handily explains the situation.
Reparative reading, on the other hand, is reading that is looking for a solution, or reasons to hope; that is interested in generating ways out of the predicaments we find ourselves in (and god knows, we have no shortage of predicaments). To turn to reading and to learning as a way of healing, in order to better act, rather than as a self-defensive means of proving that there is no point to acting:
“What we can best learn from such practices are, perhaps, the many ways selves and communities succeed in extracting sustenance from the objects of a culture–even of a culture whose avowed desire has often been not to sustain them,” as Sedgwick wrote; and as Laing continues: “I don’t think art has a duty to be beautiful or uplifting, and some of the work I’m most drawn to refuses to traffic in either of those qualities. What I care about more, and what forms the uniting interest in nearly all the essays and criticism gathered here, are the ways in which it’s concerned with resistance and repair.”
“…This, Sedgwick explains, is the problem with paranoia as an approach. Though paranoid readings can be enlightening and grimly revelatory, they also have a tendency to loop towards dead ends, tautology, recursion, to provide comprehensive evidence for hopelessness and dread, to prove what we already feared we knew. While helpful at explaining the state we’re in, they’re not so useful at envisaging ways out, and the end result of indulging them is often a fatal numbness.”
Following this introduction are dozens of essays, reviews, letters and interviews with artists, musicians and writers who take the raw material of severely disadvantaged lives and make something beautiful, enlarging and sustaining out of them: family abuse, mental illness, severe poverty, abandonment, AIDS, discrimination and oppression, war and refugee status, imprisonment and detainment, violence and institutionalized hate. None of the creators featured have had easy lives, none have avoided those issues in their work, and all have in some fashion worked to create something that is or could be part of the way out.
I loved it, but of course, there is not much mention of disability here, and when there is, it’s usually portrayed as if the disability is the enemy, rather than a society that considers disabled lives not worth living. (I listened to a podcast about the covid pandemic in Canada’s long-term care homes. Most people and most media outlets think of long-term care homes as being for the elderly; but they’re actually for the disabled, many of whom happen to be old. This podcast episode interviewed a man about my age who had been told he could not be released from hospital to his own home; that the hospital would only release him to a long-term care facility; this happened to him in his mid 30s and he’s been imprisoned there ever since. His word, not mine, since others with his condition and his symptoms are living independently with supports. He describes being offered euthanasia by multiple doctors as the only alternative to long-term care homes at the time of his health crisis; his doctors were prepared to kill him, or imprison him, but not prepared for him to have ownership and control of his own life. This is Canada in 2020. Eugenics is not over yet.) I’m disappointed in this oversight and hope she considers the subject more deeply in her upcoming book about resistance and embodied lives, Everybody.
Meanwhile, I’m trying very hard to develop some form of reparative reading practice around this, some way of approaching or thinking that can believe that one day soon, Canada–or anywhere else–will know that disabled lives are worth living, that our families are worth having, that we are not expendable, that Frances is neither your inspo-porn nor your kid’s sacrifice zone. When our self-described allies on the left won’t immediately default to ableism and eugenics, and if they do and are informed of it, will apologize and stop rather than dig in and insist on discarding our rights and entitlements.
What objects in this culture sustain disabled lives? If none do, on their own, how can they be made to?
Resistance and repair: what does that mean, in disability justice? How can we convince you that the repair we need is more often in society, and not so much our bodies? Who and what are we trying to repair; how can we begin? How can I bring that to climate work; when I know, I see, that disabled lives are often left out of climate adaptation planning, when disabled people are left behind during climate emergencies, when disabled people die in emergency response? How do we resist, when so many of us are so dependent on the systems that harm us, for whatever care we manage to get for ourselves or our loved ones? When anything but gratitude feels so dangerous, like such a risk, because the consequences are so high?
What is it that we’re resisting? How can we resist, what does it look like? And what will you do, how will you react, Dear Reader, when you learn that part of what we’re resisting is you?
Would you believe that this is the first thing I’ve embroidered for myself, for my own room, ever?
I started it last January or February, and got about 1/3-1/2 of the way done in a year, and then the pandemic hit. Every night I would stitch for an hour, and count little colourful squares to distract myself from how strange the world became. It was both meditative and productive and would reliably take all the stress of the day and park it, at least for an hour.
It’s also been uncomfortable. 2020 has been a hard year to think about love every day. We’ve seen the best of it–society closing down the economy to try to protect vulnerable people–and we’ve seen the worst of it–angry entitled jerks demonstrating with guns to demand that those vulnerable people cut their hair, for instance. That hour of stitching was calming, but sometimes also heartbreaking.
In my family of origin, “love” meant letting someone hurt you without complaint. It meant no boundaries and no limits. It meant if someone punched you in the face, you would never bring it up, because that would be MEAN. (“Kindness” was the shorthand used for enabling; we must be “kind” to the abusers by never holding them accountable! Accountability is MEAN.)
You could boil down their definition to an equation:
Feelings > Lives
Or slightly longer:
The feelings of those with power/status > The lives, safety, or well-being of those without power/status
That my safety was continually jeopardized was an acceptable price to pay to take care of my mother’s feelings, who would have been sad if she were held responsible for her actions. Do you see? Love meant she could hurt me and I could not protect myself.
The same dynamic that results in abuse on a micro scale is at the heart of oppression and bigotry on the macro scale:
Feelings > Lives
Men’s feelings of entitlement to women’s bodies and services > Women’s bodily autonomy, freedom, and lives = Misogyny and Patriarchy
White people’s feelings of freedom, competency, comfort, and normality > BIPOC’s freedom, safety, health, and lives = White Supremacy
Abled’s feelings of normalcy, aesthetics, and entitlement > Disabled’s freedom, health, welfare, participation in society & lives = Ableism
Wherever you can see the feelings of a demographic group take priority over the welfare and lives of another demographic group: structural, systemic bigotry. This is how you end up with people reflexively and without irony complaining that if someone accuses you of sexual assault, racism, etc., “your life is over,” even though no one’s life is ever over and at most they have an uncomfortable year and some diminished income. All of the actual lives lost are the victims’, but they don’t matter as much as the feelings of the people who hurt them.
This will feel normal and be mostly invisible to the people in the high-status group. As Kate Manne pointed out in her amazing book on misogyny, Down Girl, misogynists do not think of themselves as bad people; their absorption of the message that their feelings and entitlements are naturally more important than women’s lives is so complete that any suggestion that women’s lives have value outside of their service relationship to men triggers a genuine moral outrage. I have no personal experience with this, but observing from the outside, white supremacy looks pretty much the same: How dare anyone suggest that black lives matter! You can’t call me a racist! That’s MEAN.
There would be no way, absolutely no way, to communicate with these people about the wrongness of their beliefs and actions that also takes care of their feeling, because the centering of privileged people’s feelings over everyone else’s lives is exactly the problem.
I remember watching United Shades of America a few years back, where W. Kamau Bell, a black comedian, visited KKK leaders.
Not a single one of these KKK members admitted to hating black people. Goodness gracious, no! I don’t hate them, why, I love them! I love so much in fact that I am going to forcefully push what I perceive as their best interests on them over their objections, their best interests apparently being to be as far away from me as possible. How can you suggest that I hate them? That’s so MEAN!
Feelings > Lives
Because of where I came from and my over-riding life ambition of Not Becoming my Mother, I try to flip the equation:
Lives > Feelings
Of course feelings are wonderful and it is a joy of human relationship to prioritize the care of feelings for those we love most. But that natural instinct has been hijacked in the service of bigotry in the public sphere for a long time: the powerful, those with status and privilege, have endlessly demanded that society cater to their (our) feelings. Don’t be mean!
I think about all of the times in my childhood when adults around me should have seen, or did see, what was going on, and looked the other way.
After all, they didn’t want to be mean to my parents.
They wanted to give them the benefit of the doubt. Surely my parents didn’t intend to cause harm (they did). There must be another explanation. Probably I deserved it. Maybe they’d had a bad day. My parents were very nice-seeming, respectable, upper-middle class white professionals. They could not be abusers. They were so polite!
They centred my parents’ feelings over my life. (And my dad centred my mom’s feelings over his own life. It was a choice with tragic consequences. He seemed to believe, right to very end, that if he only kept letting her hurt him without complaint, one day she would value him, and stop. That never happened. She just kept hurting him.)
If we are going to show up in the world today with love as a core value, those of us with structural power and privilege, it is going to feel bad.
It requires the opposite of self-care: the recognition that becoming a self worth being will require dismantling many parts of us that we were told were so natural to our entitlements that we don’t even see them.
It is not just marching in the streets for an end to police brutality against black people. It means understanding that we have received too much benefit of the doubt, that our sentences have been too short, our fines too light, because our white skin causes law enforcement and the justice system to see us as innocent even when there is substantial evidence to the contrary. It is not just advocating for fair hiring practices for people of colour; it means understanding that our own professional advancement has been artificially accelerated at their expense, that much of what we own is not rightfully ours, that opportunities we badly want would rightly go to someone else. That we are not as competent nor as qualified as we’ve been told.
It is not just advocating for accessible buildings for disabled people. It is understanding that the discrimination against disabled people is based on a hierarchy of bodies, with some bodies worth having and others not, and that your own physical advantages would become meaningless if discrimination against disabled people ended. Your body size would not matter. Your attractiveness would not give you an advantage. Your thick hair would not be a point of pride. Height would not earn you a better income. Youth would not have more status. Thinness would not equate with self-control. And yet you would have to advocate for disabled people anyway.
Our advantages, our own unearned privileges, would first of all, need to become visible to us: and that is uncomfortable because it challenges us to accept the extent to which our successes were unearned.
We would then have to follow through on dismantling those privileges, which is going to feel like putting our most beloved belongings in a pile and deliberately setting them on fire.
People like to argue that privilege is “not pie” and more for others doesn’t mean less for you/us, and to some extent, that’s true: there’s enough dignity, respect, kindness, food, water, air, and shelter for everyone to get a good piece. We can all have decent work and live in a society that sees our lives and our contributions as worthy and real. But in other ways, it’s not true: not everyone can be a CEO, not everyone can be president or prime minister, not everyone wins elections, not everyone becomes a movie star, and in those domains, more for groups that have been discriminated against will mean less for the currently privileged. It is pie. You still have to share.
It is going to feel like a domestic abuser who didn’t even recognize their actions as abuse because they so thoroughly internalized their entitlement, being told they need to go to anger management.
It is going to trigger a tsunami of moral outrage, a knee-jerk demand that people talk to you very nicely about all the ways you’ve harmed them. You will automatically and without reflex lean heavily on your privilege and demand that your intentions and feelings be centred and cared for, as they always have been.
It is going to feel like being an alcoholic or addict in the first stages of the 12 steps (privilege, as they say, is a hell of a drug; and most of us don’t realize how addicted we are), and you’re sitting in a room full of “real” alcoholics, telling yourself you’re not actually like them, you’re different, better, and your “searching moral inventory” and process of making amends won’t take too long, after all, because you haven’t hurt that many people.
It is going to be wanting to leapfrog right past the moral inventory and making amends and go straight to sponsoring a new member–because hey! You’ve got it! Alcoholism is REAL, you’re one of the good ones, gold star!
I’m beating this horse pretty thoroughly, I know. Believe me, it’s not from a sense of my superiority. What I’ve mostly gained from a few decades of reading about racism, for example, is a profound sense of my complete ignorance and how unlikely it is that I will ever fully address it.
Collectively, none of us will ever fully know. And it is from the position of accepting our near-total ignorance and searching out appropriate leadership that, I believe, we can begin to move forward in dismantling structural privilege.
The love in my family, growing up, never felt like love. But I had to pretend it did and act like it for the belonging that was available there. It was a kind of gaslighting: we are hurting you and denying it because we love you, and you will put up with it because you love us, and if you step out of line, you will lose everything.
I did step out of line, and I lost a lot, but not everything; there is always a world outside the fiction.
I don’t know what love means, or if it can be worth anything, if we can’t see what’s going on right in front of our faces and work to change it. Maybe love prefers to be gentle, patient, and kind; but when harm is being done, it can’t be cowardly; it can’t insist on one-directional patience and kindness based on lies.
I often say when talking about social justice that empathy goes up the social hierarchy: our culture routinely empathizes with men, with white people, with abled people, with straight people, and prioritizes that empathy over empathy with people who are marginalized or outcast. It was, for example, the empathy of bystanders for my parents that caused them to overlook the harm that was caused me. But it’s the same for all these social goods: empathy, kindness, generosity, and love, tend to go up the social hierarchy, and those of us at or near the top tend to accept this as our due. It is not only right and comfortable that others treat us as more worthy than we are, but in fact we deserve it, and will demand it when it’s not forthcoming.
Instead, we need to re-train ourselves, consciously work to send empathy, kindness, generosity, patience and love down the social hierarchy. We need to do this so regularly and so well that the hierarchy itself flattens. No one’s feelings should ever be worth more than anyone’s life.
Dear Readers, here is the Prime Minister of Canada during a recent physically distanced question period:
Please take note, if you will, of our fearless leader’s very noticeable lack of a recent haircut.
You’ve already noticed the lack of recent haircut. Maybe you read an article on his lack of recent haircut. Maybe you saw that video meme of him sweeping his hair back from his face during a press briefing.
Of course Trudeau hasn’t had a haircut; all the barbers and hairdressers are sitting at home waiting out the pandemic, like so many of the rest of us.
Yet I keep hearing from friends about their hair growing out and how badly they need a haircut.
Friends, if the Prime Minister can go on camera in front of millions of people every day and reassure them with hair that is at least two months’ past its trim-by date, you can sit in your house in your pajamas and facetime with your aunt or boss with shaggy hair. Particularly considering both your aunt and your boss and everyone else you know also badly needs a trim.
And hair isn’t half of it, for some folks: body hair, eyebrows, facials, massages, gym time, sports practice: our bodies, in function and appearance, are maybe for the first time radically out of the control of their proprietors.
Of course, for some of us, that’s been more or less true all along. The one thing that is radically different is that we are all going through the non-control-of-our-appearance-ness of this at the same time. Which means it basically doesn’t count. No one can hold your haircut or your eyebrows or your roots or your reduced fitness level against you when our entire society is experiencing exactly the same thing. (Or they can try, but they’ll be dicks.) You have a once in a lifetime pass to let yourself go.
I don’t know. I personally am finding this part of it kind of amazing. Like: “oh hey, grey hair! And I can’t do a single fucking thing about it! That’s fantastic!”
I guess I could buy a box of hair dye, but I DON’T WANT TO.
This does of course reflect some privilege: for some of us, hair (for example) has been used as an active tool of discrimination and exclusion for a very long time (eg. black hair, and all the ways rules around it have been used to exclude and silence black people). And yet, it’s mostly white people I’ve seen complaining about their hair. So consider this directed solely towards those people who, like me, are at worst experiencing mild discomfort around lack of aesthetic services:
We can just collectively declare spring and summer 2020 the year in which it is trendy to look like you’d just been rescued by park rangers after being lost in Banff for a couple of months. It’s cool! It’s totally in style. It’s what everyone is doing, including the Prime Minister, and god knows he of the Vogue cover is not immune to vanity.
Let’s call it #SolidarityChic, and be done with it.
In that spirit, I share with you a few anti-vanity recent sewing projects, in all my shaggy, non-make-up, what-is-the-sun glory.
Masks, because it’s gone from fringe accessory to public participation necessity. I used the Marfy pattern and made it 1000% more complicated for myself by insisting on screen printing, stenciling, and stamping them in such a way that they match up across the centre seamline, for no reason whatsoever except that it sounded like an interesting challenge. This inspired a few cursing fits but I think they turned out pretty well in the end.
I also embarked on a large collection of stretchy pants with pockets.
For the first time in my life, I’ve needed them.
Tailored wool pants are not a great choice when you’re working 8 hours at the kitchen table with a puppy who insists on being on a lap and who sheds–not sparingly, but in a fluffy cloud that follows her like Pigpen’s dust. I have leggings of the “can wear them for an hour for a workout” variety, because their lack of pockets means I have to take off my insulin pump, which I can only do for so long.* I had two nice-ish pairs of non-stretchy jeans that are great for going out shopping or for casual Fridays at the office, but that I don’t generally wear for just hanging out.
And I had exactly one pair of stretchy jeans with pockets comfortable enough to sit at my new kitchen-table-office for hours at a time, but also seven years old and starting to wear through the knees.
So I ordered myself some leggings fabrics from Discovery Fabrics and went through the stash for any stretchy bottom-weight stretch cottons I could make into pants and went to work.
I have never, ever before in my life owned or wanted pull-on jean-like pants. But these were desperate times. I quickly drafted a simple pocket in the front seam (the one that looks like a pocket, but isn’t) and made one pair from an extremely stretchy blue twill with a snakeskin like embossed pattern on it from Downtown Fabrics, and another in a fantastic huge floral print with less stretch but just enough to make these work (from another Queen W store, but I forget which one).
God, I miss Queen West.
It is Jalie, so of course the sizing is impeccable and everything lines up. I can’t comment on the instructions since only partial ones were included with the pattern (which directs you to their website for the rest). But the partial directions get you through to the faux fly just fine, and if you’ve made pants before, you know what the rest is anyway.
Entire libraries are filled with scholarship and wisdom about anti-black racism. Consulting companies exist to educate white people about anti-black racism. Free online anti-racism training is widely available and easily searchable. Poets, novelists, dancers, composers, film-makers, singers, bands, have devoted their careers to creating art that explores anti-black racism. I have nothing new to add. (And the reason why racism is still so prevalent is not because white people have had no one to teach them what to do about it. An Amazon’s worth of trees have been felled to make the paper on which books have been printed about anti-black racism.)
Your privilege is the biggest risk to this movement.
That’s right: the biggest risk. The compromises you are willing to make with our lives, the offenses you are willing to brush off, the everyday actions you refuse to investigate, the comfort you take for granted — they all help legitimize and strengthen White Supremacy. Even worse, when you bring that into our movement and refuse to investigate and challenge it, you slow down our fight against White Supremacy and turn many of our efforts against us. When POC say, “check your privilege,” they aren’t saying it for fun — they are saying it because when you bring unexamined privilege into anti-racist spaces, you are bringing in a cancer.
Your privilege is the biggest benefit you can bring to the movement.
No, I’m not just talking nonsense now. Racial privilege is like a gun that will auto-focus on POC until you learn to aim it. When utilized properly, it can do real damage to the White Supremacist system — and it’s a weapon that POC do not have. You have access to people and places we don’t. Your actions against racism carry less risk.
You can ask your office why there are no managers of color and while you might get a dirty look and a little resentment, you probably won’t get fired. You can be the “real Americans” that politicians court. You can talk to fellow white people about why the water in Flint and Standing Rock matters, without being dismissed as someone obsessed with playing “the race card.” You can ask cops why they stopped that black man without getting shot. You can ask a school principal why they only teach black history one month a year and why they pretty much never teach the history of any other minority group in the U.S. You can explain to your white friends and neighbors why their focus on “black on black crime” is inherently racist. You can share articles and books written by people of color with your friends who normally only accept education from people who look like them. You can help ensure that the comfortable all-white enclaves that white people can retreat to when they need a break from “identity politics” are not so comfortable. You can actually persuade, guilt, and annoy your friends into caring about what happens to us. You can make a measurable impact in the fight against racism if you are willing to take on the uncomfortable truths of your privilege.
Start there, but don’t stop there. Keep going.
So. Uh. Have any of you found yourselves sewing through your fabric stash a bit faster than you’d anticipated when making your New Year’s Resolutions?
Oh, not asking for any particular reason–just–you know. Around the time I published that last post, I stopped looking at my closet full of fabric as an Embarrassing Monument to Lack of Self-Control and started seeing it as a fabulous sandy beach in which I can bury my ostrich head. Which might work better if I weren’t refreshing the John Hopkins site and three local news sources approximately once every three minutes.
It’s been three weeks of school closures here. And since that announcement, we’ve seen the near shut-down of the provincial economy, with all in-person non-essential workplaces closed down, as well as colleges and universities, border closings both external and internal and now all public gatherings limited to five people max. No visitors to hospitals or long-term care homes. All outdoor public spaces closed. Grocery stores only letting in one person per family, and only a small number of people at a time. Everyone swimming around in their own little home fish-bowl.
You will be shocked to learn that I am sewing things I don’t need. You will also be shocked to learn that I have been making more mistakes while sewing than I normally do. I have finally found the time to sew up Frances’s rain jacket (Jalie City Coat) with some breathable waterproof fabric I bought from Discovery Fabrics last year. The jacket is sewn up and hemmed and pretty much done except for the zipper, which is on its way in the mail. Your guess is as good as mine as to when it’ll actually get here. (The pattern is meant for buttons, but I think a zipper makes better sense for a waterproof jacket, so I’m going to try a replacement.) But I guess at least now Frances has a waterproof cape-like garment.
Otherwise, I have been sewing myself completely frivolous and unnecessary jersey garments; honestly, who knows when I’m going to leave the house except for daily walks and occasional grocery visits? What use are tailored wool pants in these circumstances? Maybe it’s time to finally make myself a pair of leggings with a pocket for the insulin pump. … Actually, that’s not a bad thought.
I’d post my latest projects, but that would require getting dressed, and possibly wiping the stunned look off my face. What are the chances?
Tell you what: if I look in the mirror and see a facial expression that isn’t some version of “WTF?” I’ll consider taking pictures of the new projects and doing a proper post.
It’s not just the hoard that’s become a sudden advantage.
Frances’s medical condition is extremely rare; fewer than fifteen people have been diagnosed with what she has. We’ve had years of practice in navigating symptoms and syndromes that doctors don’t understand yet. Those medical issues often mean cancelling plans and not going out much. And I work in a field where exponential growth in something has catastrophic public health consequences (among other things) and that’s just … Tuesday. So while everything is different, nothing is different, if you know what I mean.
But weirdly, the same things that have been sometimes very costly disadvantages–being a chronically ill single mom to a kid with a very rare condition, and no family support–are the very reasons why I am now working from home with my regular job for my regular pay, when all of my colleagues are working weird schedules and overtime on the front lines.
Our dog has gone from bug-eyed ecstasy every day because her humans are staying home again to taking us completely for granted and sometimes hiding in the basement. Still, she’s the clear winner of our current situation. Playtime on demand and endless laps for naptime and walks every day.
So much of this is so incoherent and formless still that I can’t think of a way to tie this post off with a neat bow. It’s weird, and yet its deeply familiar. It’s excruciating, yet marked mostly by unending tedium. My day to day is largely wonderful, spending lots of time with my favourite human and the Impossible Puppy and watching spring unfold, but in a town and world that is holding its breath and wondering how bad this is going to get. I think all we can do right now is let this be wide open, and hold our uncertainty and others’ very gently.
There’s almost 70 stories here now of people acting from their best selves, and my sense is most people have found the thing they’re going to do, whether it’s organizing virtual dinner parties or finding ways to express care during isolation and quarantine or thanking front-line workers or supporting their community tangibly by sharing goods, it’s becoming a habit.
If you’re looking for opportunities to help (or to receive help), check social media for caremongering or kindness groups in your community. They’ve spread like wildfire.
I don’t feel this needs daily updating at this point, but rather than just let it tail off, I wanted to share a few articles that tie this all into a point about what comes next.
The panic, driven by fear, ought to be replaced with a passion for a better life for the planet and its people. We will not acquire the calm we need to deal with this pandemic through a fear of death. What we need is a respect for death and a new hunger for life. We could begin now to create the best chapter in the human story. It could be said of us, in the future, that faced with a viral catastrophe we did something amazing. Imagine if the leaders of the world chose at this moment to put in place policies that could reverse climate change, bring health and education to all its people, and kill off the virus of poverty that has spread untold misery.
This might sound fanciful. But history has always been made by those who guided us with vision at moments of our greatest crisis. All our myths point in two directions. We either go upwards, towards the true meaning of civilisation, or we head for an apocalypse.
They may see a dark side, like the ordered authoritarian populist outlook vividly seen in Viktor Orban’s power grab in Hungary, or the fuelling of xenophobia reflected in depictions of the pandemic as a “Chinese” virus. But mainly what we are witnessing in the country has all the appearances of a seismic shift in collective behaviour and attitudes, and maybe a new sense of direction and innovation—the acceptance, even the welcome acceptance, that Canada and the rest of the world could be enveloped in a great disruption, leading to a fundamental transformation of the role of the state and a re-balancing of the forces of societal power.
Shit-hits-the-fan escapism—a big part of the alt-right imaginary—never predicted this. I have lurked in countless stagnant ideological internet back alleys where young men excitedly talk about the coming end of civilization, where men can be real men again, and women will need protectors. How inconvenient, then, that when this world-inverting crisis finally showed up, we weren’t given an enemy we could fight with our hands (wash your hands).
The end of the world has never been quite so simple a mythos for women, likely because most of us know that when social structures crack and shatter, what happens isn’t an instant reversion to muscular state-of-naturism. What happens is that women and carers of all genders quietly exhaust themselves filling in the gaps, trying to save as many people as possible from physical and mental collapse. The people on the front line are not fighters. They are healers and carers. The very people whose work is rarely paid in proportion to its importance are the ones we really need when the dung hits the Dyson. Nurses, doctors, cleaners, drivers. Emotional and domestic labor have never been part of the grand story men have told themselves about the destiny of the species—not even when they imagine its grave.
You can watch neoliberalism collapsing in real time. Governments whose mission was to shrink the state, to cut taxes and borrowing and dismantle public services, are discovering that the market forces they fetishised cannot defend us from this crisis. The theory has been tested, and almost everywhere abandoned. It may not be true that there were no atheists in the trenches, but there are no neoliberals in a pandemic.
The shift is even more interesting than it first appears. Power has migrated not just from private money to the state, but from both market and state to another place altogether: the commons. All over the world, communities have mobilised where governments have failed.
And if you’re looking for some books to read to pass the time on similar themes:
Fact is, The Walking Dead is a story that could only be told in a highly individualistic, neoliberal, gun-loving society like America’s South. Just about anywhere else, people would have banded together to slow the virus and preserve community. Hell, even in the deep south, in a pandemic, people are cooperating and sharing and not, by and large, shooting each other over toilet paper.
We’re better than we’ve been told.
New for March 30
I can’t believe I’m still finding new stories every day!
A Toronto man is “climbing Mt Denali” by climbing the stairs in his apartment building 55 times in one day to raise money for health care in developing countries.
Dyson, manufacturer of hair dryers and vacuum cleaners, has developed a new ventilator for covid-19 patients and is producing them for the UK government, and plans to donate 5,000 internationally.
Our local municipal government has put together a website to help people buy from local businesses and restaurants while social-distancing.
Emma Teitel at the Toronto Star wrote an article including a bunch of stories like this, including a dog shelter that has adopted out every single one of its homeless dogs, a hockey manufacturer that is now making face shields for health care workers, and a Covid-19 Toronto app that connects people who need assistance with resources.
This lovely article about tiny acts of solidarity, also including stories like kids starting up a neighbourhood newspaper, and people volunteering to shelter and feed truck drivers whose restaurants and rest stops have closed.
Far from withdrawing from one another during this period of physical distancing, Canadians have come to recognize their dependence on each another and that recognition is reflected in “millions of tiny acts of solidarity,” says Mervyn Horgan, a University of Guelph sociology professor who studies the interaction of strangers in public spaces.
“It’s been quite beautiful to watch it happen and to be part of it amidst the crisis.”
Westdale Theatre here in Hamilton is starting an online film club through Facebook Live.
New for March 27
A hotel manager was forced to lay off half of her employees due to Covid-19–but then she found them new jobs.
Only one new story today! I think we’re hitting saturation on these stories, so they may slow down. I hope you’re all well and experiencing some kindness in your daily lives in these trying times.
New for March 26!
Toronto restaurants have joined together to form Feed the Frontlines, which collects donations for the restaurants to prepare free meals for front-line workers.
I suspect that when we have eventually run this virus into the ground, and we try to understand what worked and what didn’t, we will find that societies with high levels of social solidarity did better than societies where citizens mistrust one another.
Social solidarity—the sense that we are all in this together—is what makes retired nurses volunteer to go back to work in the frightening hospitals, and what makes healthy young people stay home to flatten the curve.
I think social solidarity is why the curve is so flat in traditionally collectivist East Asian societies, and rising so sharply in the United States.
Home is where the hearts are: People are decorating their front windows with hearts and putting hearts up around their neighbourhoods.
New for March 25
We’ve got fifty stories as of today!
Teachers at Robertson Elementary School driving in a “parade” through the neighbourhood so they could see their students.
A restaurant in Toronto providing free meals to those who have lost their jobs in the shutdown.
A birthday party parade!
New for March 24
The best part of doing this so far is waking up every morning to messages from people sharing stories like these. It’s a nice little buffer before seeing how all the numbers went up. Here’s a short list of new stories for today; it’s my birthday and I’m going to try to spend most of it off the internet.
(I’m going to start putting the most recent stories at the top instead of the bottom. So:)
New for March 23
So far, the best part of doing this has been waking up to messages from friends telling me about fantastic stories they’ve seen. What a gift right now! Thank you. ❤ ❤
Our local newspaper has put out a call for people to write or draw hopeful or happy messages on their sidewalks with chalk, and is asking people to send in photos. It’s already taken off enough that a friend of mine, Leah, sent me photos of messages she’d seen yesterday taking the dog for a walk:
And our most famous local band, The Arkells, has been holding free online music lessons for people stuck at home, and recently posted this video:
Last but not least for today: An article written from the perspective of 2050, about how we all used the Covid-19 pandemic to come to our senses and fix a lot of broken parts of our societies.
New for March 22:
A local businesswoman, Kate DeJonge, has started Hamilton Helpers, to connect people and businesses during the shutdowns and find innovative ways for businesses to support residents, and vice versa.
A small family scholarship held a fundraiser to purchase laptops and buy internet access for nursing students who could not afford their own during a school shutdown. (Thanks, Rachel!)
A restaurant in Squamish is providing free meals to families who need one during the shut down.
Politico published an article on some positive outcomes we might see from this time.
Loblaws, a grocery store here in Canada, has increased the pay of their “front-line” employees, both full-time and part-time, by $2/hr in recognition of the importance of what they’re doing and the risks they’re taking. (It’s not enough, but it’s a start!) Metro followed suit after the announcement was made.
A friend sent me a video of her apartment neighbours in Italy getting playing bingo on their balconies: One person calling out the square to everyone, others repeating it so all can hear. Someone else I know is setting up Zoom calls for their friend group to play Risk together online.
Dan Mangan’s second Toronto show was cancelled on March 13, but they already had the gear set up and ready to go, so … he went ahead and had the show for an empty concert hall, recorded it, and released it free for people to see on YouTube. https://www.youtube.com/watch?v=qjQ80Njm96g
It’s an idea that’s taking off: There’s a whole series of shows (called URGNT) in empty venues planned in Toronto in the coming weeks, live-streamed for audiences stuck at home. Donations will pay the skeleton crew & performers a small amount while they are otherwise out of work. Additionally BandCamp is also making things free or lower cost (note: I have no idea wth BandCamp is; just passing on what I’ve heard in the hopes that it is more intelligible to other people). Here’s a recent Wayfarer’s concert that has been released in full: https://wayfarer.bandcamp.com/album/live-at-mills-hardware
Sublime Stitching is sending out embroidery patterns and supplies at reduced cost to those who really need something calming to do and can’t afford the regular prices.
During municipal budget deliberations a few weeks ago, Hamilton Council voted down a motion to ensure that all City employees were earning a “living wage” (rather than the provincially-mandated minimum wage; a difference of just over $1.5/hour). On the 20th, while passing the 2020 budget, they held the vote again and passed the motion, at the same time endorsing short-term property tax deferrals for those facing covid-related financial difficulties.
An article on how to support local businesses right now, including my favourites, spending your grocery money at the small stores and tipping delivery people well.
Netflix has announced a $100m fund to support their arts workers affected by pandemic shutdowns.
Original:
I don’t want to say I’m not scared. I am. I’m not afraid of social distancing–I’ve had 45 years of practice at social distancing–I’m used to working from home; I have a stack of unread books as high as the armchair, a closet full of fabric, a few embroidery projects half-completed, and a smart phone. Social distancing I can do. What scares me right now is the prospect of being redeployed to support the pandemic response in a way that can’t be done from home, because the schools are (rightly) closed so Frances is at home full time and while she is doing better, she can’t be left here by herself for weeks on end. Or months. Or whatever this turns out to be. So there is some uncertainty around here.
And I’m not not-scared of getting sick, either. I’m not in a high-risk age group, but I’m in a high-risk medical group, and I need to be able to be well enough to care for Frances. So I am being very careful.
It is scary, and for reasons beyond the medical, and we’re all scared. At least, if we’re sensible, we’re scared. There’s plenty of people yammering on about how they’re not scared of a virus fergodsake and they’re going to continue living their regular lives, and those people, if you’re sensible, probably make you angry.
But they’re a minority.
When this is over, I want you to remember this: in a time of crisis, most people looked around themselves and asked what they could do to help. Most people acted quickly and decisively to protect the health and safety of elderly, disabled and chronically ill people they’ve never met. Most people directed their care and concern towards economically vulnerable groups.
Think about it: If the neoliberals were right and humans were all innately selfish and made decisions in their own self-interest, then our business leaders and politicians and most regular people would have looked at the virus and its fatality rate, shrugged, left the elderly and disabled to their fate, sequestered themselves until it was all over, made a lot of nice speeches about the sacrifices doctors made, and just cleaned up when it was done. (In other words, I guess, we’d all be Trump.)
But instead, when a crisis hit that would affect (to be blunt) people of limited economic or productive utility–people who largely require support and don’t pay much in taxes–the entire economy willingly ground to a halt to protect them.
Take a minute to think about how remarkable that is.
Yes, some people and some companies refuse to do so. And everyone else is shunning them.
Some monkey experiments, famous in certain circles, are relevant here: capuchin monkeys were “paid” to complete tasks by either a piece of cucumber (ho-hum) or grapes (yum!). Everyone willingly completed the tasks when everyone was paid cucumbers, but the moment some monkeys got grapes, those who were stuck with cucumbers threw tantrums and refused to complete their tasks.
Related experiments with humans show much the same, and the data for foraging societies and pre-history largely agree: humans are wired to be cooperative, collaborative, and egalitarian. Foraging societies survived the lean times because when one person was hungry, they were all hungry; and there were social repercussions (like ostracism) for anyone who attempted to accumulate more goods than their peers.
This is a hard and scary situation. But I am still reassured at how quickly our competitive, capitalist, individualist society made a decision to pay the price together and protect each other.
This is not the only crisis we’ll be facing this century, and if even some of the climate change projections hold up, it will be far from the worst. When Covid-19 is over, remember this: This is who we are. This is how we can always be.
Here’s proof. I’ll update this with new stories as I find them. Feel free to share your own in the comments (doesn’t have to be a news story; something you saw or did counts!). Let’s keep this focused on stories of compassion and cooperation.
Care-mongering: Hamilton non-profit Disability Justice Network of Ontario creates a FaceBook group for Hamilton neighbours to take care of each other, and the concept is quickly copied by other communities. We are big fans of the DJNO in regular times, and this just makes us love them even more.
The federal, provincial and municipal governments are cooperating and collaborating seamlessly across party lines to provide support to vulnerable Canadians, including those ineligible for EI, small business owners, parents affected by school shutdowns, homeless Canadians, etc. (It frankly amazed me how quickly we mobilized to find the money to protect people that progressives have been saying we need to do a better job of protecting all along.)
Local businesses–including my favourite local fabric store–closed their doors before government action mandated it and before government supports facilitated it.
Everyone and their Aunt Myrtle is offering free online classes on a wide variety of subjects. Here in Hamilton, one of our local organizers has created a FB group collecting on-line dance lessons so people can get their fix at home.
Teachers are offering free education for kids stuck at home during school closures.
This TV baseball host is using his mandatory down-time to call fans quarantined at home.
Andre Picard: “For every toilet paper hoarder and I’m-gonna-cough-my-lungs-out-on-the-subway guy, there are probably 10 others doing good deeds – shopping for an elderly neighbour, taking in the neighbour’s kids so she can go to work, walking someone’s dog if they are sick, making a donation to the homeless shelter.”
You can’t work in the climate field without regularly talking to people who think organizing 99% of the world’s climatologists into a mass conspiracy of fake-consensus is no big deal. I can only assume that none of them have ever managed a project, or even tried to get a group of 12 people to agree on a restaurant for dinner. Dear Readers, let me tell you about the amount of time I’ve spent this week trying to get half a dozen well-intentioned adults who all want the same thing and agree on the goal to produce a logo slide that all could agree on.
Yet a good chunk of functional adults (between 10 & 20%, depending on how you define it) dismiss a scientific field over 150 years old that is directly pertinent to their and their children’s survival. It seems like “this could kill your kids” should make it salient, but no.
I’ve spent about a decade trying to figure this out. I’ve read psychology and neuroscience and sociology and anthropology and political science and cognitive science and communications studies and organizing theory and the history of other mass social movements and more.
What it is not about, is facts.
Lots of people assume that people get into conspiracy theory communities because of a lack of good information; and that, therefore, the thing to do is provide people with good data. Evidence, citations, references, facts, surveys, statistics, etc. If this doesn’t work, obviously the person is a lunatic, probably stupid, maybe never finished high school.
But no. It’s much weirder for people to respond to information that challenges their beliefs.
If you want to fall down a research rabbit hole, google Knowledge Deficit Model. You will find reams of data from almost every domain showing that providing facts and data does not alter opinions or behaviour, and a collective absolute failure to alter our own behaviour in light of it (maybe not surprising). I have been, in my own work, trying to get this point across for years now, and yet whenever a new issue or problem arises in the environmental space, the first thing that happens is someone pipes up with “We need an education campaign!”
No. We do not need an education campaign. We want to believe that people are logical and will reason their way through to an accurate conclusion based on information, but that almost never happens. Maybe–as the experts say–when a person has no pre-existing opinion or perspective, you can get them to form one based on the information you give them. Otherwise? No joy.
If it’s not about facts, what is it?
Identity.
It’s not only about identity, but if you don’t grasp this part, nothing else adds up.
People adopt the beliefs and behaviours that are required for belonging to their community of choice.
Facts that are counter to beliefs espoused by the club aren’t just rejected, but actively resisted as an existential threat; encountering contrary facts, no matter how well-documented, further entrenches the conspiracy or other counter-factual belief, to hold on to an identity that has become central to their sense of self. Any contrary information is perceived as a hostile act.
(I mean, have you ever wondered why they all sound so angry? They are at war with everyone who has a contrary opinion.)
When someone leaves voluntarily, it’s because the cost of membership is too high. In The Cure for Hate, McAleer writes about how his abusive childhood led to his finding belonging in white supremacy, and the conspiracy theories he swallowed to maintain that belonging; he paid a very high price and continued to do so (obviously though not as high as the people and communities he targeted), and it wasn’t until he had children and became aware of the high price they were paying that he was motivated to step back.
Even then, it was hard; he had to leave his entire social circle, everyone who cared about him, and there was no one in wider society waiting to welcome him back besides his mother (for obvious reasons).
You cannot argue someone out of a conspiracy.
Yet here I am: trying to use data to convince you that you can’t use data to convince anyone of anything, if their identity requires them to hold on to their mistaken beliefs. Tell me: is it working?
By coincidence, while drafting this post, I was handed an ARC of Mark Jaccard’s The Citizen’s Guide to Climate Success. The introduction covers his recognition over time that data never convinces anyone to act on anything, even when you are a tenured professor of the field in question, and Chapter 2 is about the Climate Scientists are Conspirators meme. It’s unavoidable these days in climate work (though somehow, lots of people keep avoiding it).
In a 2012 episode of his Colbert Report TV show, comedian Stephen Colbert commended on the real-life response of the North Carolina politicians to a state agency’s prediction that sea levels will rise 39 inches by 2100 because of global warming.
“North Caroline Republicans have written a new bill that would immediately address the crisis predicted by these climate models–by outlawing the climate models!” (p. 53)
We are talking wealthy, well-connected, well-educated US politicians; these are not fringe weirdos living in their mothers’ basements who lack access to better information or the ability to interpret it. If providing information reliably caused people to alter their views, there would be no climate deniers anywhere, let alone in positions of power and authority.
Yet when presented with contrary information, these people outlawed the information.
Why? Because it threatens every part of their identity and world view. Because it threatens their membership in an institution, the Republican Party, that has taken climate denial as an article of faith, and which is central to their entire role and identity in the world. It’s not a simple singular fantasy or the feeling of being at war with systems of power–these dudes are the systems of power.
The same polls show that these same North Americans are convinced that no one cares about climate change. Why else would nothing be done?
But the reality is much stranger: almost everyone cares, a solid majority are worried, a significant minority are panicking, and no one is talking about it because our culture of political and social etiquette says it is rude to do so (Eliasoph, Avoiding Politics; and Norgaard, Living in Denial). This, too, is a form of denial, a kind of conspiracy theory; a conspiracy of silence. A conspiracy that says, We must all pretend very hard that nothing is happening. We must all carry on as if nothing terrifying looms on the horizon. We must only talk about sports and beer and television and movies and music and weekend plans. We must build our solitary prisons, we must guard our isolation with silence and false smiles.
This is not rational. It is based on identity, the need to belong to public spaces where the behavioural demand is to never introduce conflict and never bring up anything that makes people sad or afraid. If you “believe” in climate change, and you aren’t talking about it with your friends and family and colleagues in public and everywhere else, then you too are locked in a conspiracy theory. A culture that demands a set of performative behaviours that signal a belief in a set of social and political values that are not based on fact, and which you might not even yourself truly value or hold.
You very likely accept the science of global warming
You very likely are at least concerned, and increasingly likely to be extremely scared, of it
You want something to be done
You avoid at all costs discussions of this outside of a few very careful very private conversations that can have no political consequences whatsoever and will never affect any kind of change
Most likely because you believe that talking about climate change publicly is a social faux pas that will lead to your exclusion from social spaces (and as a person who’s been professionally butting her head against that taboo for over a decade or now–you are probably right)
You have selected group identity over your personal interests, and over the established facts
It is friendlier than right-wing conspiracy communities, but at heart, quite destructive.
Yes, I know, #notallblogreaders. But most of you, statistically speaking. Less now than two years ago, which is encouraging, but still most.
My point is: you have also adopted beliefs and behaviours to belong to groups that are not factual and which you may not even fully support. This is not because you’re uniquely dumb or uneducated or nuts. It’s because you are a human being, and that’s what human beings do. Conspiracy theorists are different only for having selected groups that are farther out on the cultural fringe; their actual core behaviours are not that weird. And I mean, believing that the earth is flat is probably more harmless than pretending to believe in social contexts that climate change isn’t a catastrophic threat requiring urgent action.
But if you’re interested in countering disinformation, what do you do? If you want someone to leave a pernicious and poisonous identity based on anti-social lies behind, how do you intervene?
Here’s a short list of what the research shows works, at least sometimes:
Impose consequences. People leave these groups when the costs of remaining in them outweigh the group identity benefits of belonging.
Find messengers and spokespeople for facts who share key identity traits with the person or group you want to talk to. For example, ex-white-supremacists have an easier time of reaching current-white-supremacists. A pipeline fitter in Alberta whose entire economic identity is based on participation in the oil and gas sector is not going to listen to me, a feminist left-voting government bureaucrat from Ontario who gets paid for climate work. It doesn’t matter how right I am. I need to find an ex-pipeline-fitter who found a better job in a green industry.
There needs to be a path back. If there is no way to rejoin society from beyond the pale, no one will try.
Refuse to have the fight over facts. Focus on solutions, and how those solutions will in fact not upend or threaten their identity.
Find shared values, and connect the issue to the values you share. If I try to have a conversation with a group of conservative moms about climate change that starts with the importance of carbon taxes and emphasizes the social justice implications of climate vulnerability, we will get nowhere. If I want to have that conversation, it’s much more likely to be effective if we connect over love and concern for our kids.
Relationships, face-to-face connection, and empathy are key. Not everyone is up to this, obviously. It would be grotesque to require or expect victimized communities to have empathy and conversation with their abusers. But I recently watched First Contact for a course at work, about six extremely racist white Canadians with pretty horrifying opinions about indigenous Canadians, who signed up to spend, I think, a month visiting different communities and reservations and learning about the history and culture, meeting people, and listening to stories of abuse and discrimination. I have to tell you, my expectations were low. I was frankly amazed by how many of them experienced profound transformations within such a short time, and I think the human connection was key. Not everyone changed, and those whose identities rested more strongly on an unthinking acceptance of existing social hierarchies were more resistant. (You can sign up for a five-day free trial through APTN and watch the first season for free.)
With rare exceptions, this is not something you can do on the internet. Too many key ingredients are too hard to find in a disembodied conversation, and it’s too easy for people to rally the community that shares their perspective to shore it up in order to reaffirm a threatened identity.
If this sounds extremely difficult–well, yes.
I know. We all want Three Weird Tricks to Solve Conspiracy Theories. We would all like Five Techniques to Convince Idiots that Their Existing Beliefs are Dumb and Make Them Sound Bad. It’s not out there. There’s just the long-road, twisting-path of making connections, sharing values, being real, taking risks, having boundaries, and also recognizing where your own group identities are causing you to go along to get along and compromise your values and knowledge for the sake of membership. It has a high failure rate and it takes more time than we have, but there’s no way around it.
Zoopolis 