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 incredible The 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?
Zoopolis 