the joys of medical experimentation

Every post about the surgeries themselves that I’ve tried to write starts turning into a book.

But I want to write something about them, since it’s the only time this kind of surgery has been performed on someone with Saul-Wilson syndrome, and I want a patient’s (or caregiver’s) perspective to be available somewhere for others to see if they need it.

Because there are so few people who have been diagnosed with this condition, it’s hard to figure out what the most common features are, but in terms of relevance for hip replacement, what I’ve seen in the one study that even mentions joint replacements is:

  1. Hips tend not to be well formed, and hip subluxations and significant arthritis are common
  2. Bones are “soft,” can fracture easily (in some cases without obvious reasons) and often don’t heal well, or quickly
  3. Average height for someone with Saul-Wilson is several standard deviations from the mean. Echo, at about 4′ tall, is the tallest person with the condition in the world right now.

What this tends to mean is that it is very common for individuals with Saul-Wilson syndrome to need some kind of hip surgery in childhood or early adulthood, that the surgery is complicated by the fragility and softness of the bones, and that techniques and tools developed on average-sized adults will not be appropriate. Joint prostheses tend to be much too large, even pediatric ones, and so ideally a patient would have a custom hip prosthetic made to the correct size and proportion for their body, and in that case–in the one situation where such a surgery has been performed–a standard hip replacement surgery can be completed, with a fairly short and easy recovery time.

Many orthopedic surgeons are uncomfortable performing joint replacements on young patients (<30 years old), for a variety of valid reasons, and many surgeons will outright refuse. In many pediatric patients, a hip osteotomy will be performed to postpone the need for a full replacement. In an osteotomy, the bones are essentially reconstructed in the joint to provide better coverage for the femur and reduce the subluxation and, basically, rubbing, until the patient has reached adulthood. However, in the case of Saul-Wilson syndrome, the osteotomies that have been performed have not been successful, because the bones don’t knit together properly. The one recommendation in the single study that discusses this is that osteotomies be a last resort.

So you are likely to need to find an orthopedic surgeon who is comfortable with performing total replacements on young patients, and who has access to custom hip prosthetics.

But let’s say custom hip prosthetics aren’t available. Let’s say there’s a global pandemic. Let’s say the best estimate any expert can give you for when a custom prosthetic might become available is a shrug, and thanks to the pandemic, health-care shutdowns and surgery delays and cancellations have already turned this into an urgent situation. Let’s say the patient is in pain even when they’re not moving at all. That simple actions like sitting up and lying down can be excruciating, even with all available treatments, even on opioids.

I’ll be honest: if we’d had any better options (if we had a date for the prosthetic, if we had better certainty around when a delayed surgery might be performed, if we’d known where we would fall in the priority ranking when surgeries would resume), we would have likely not gone this route. It has been very challenging, and because it’s the first time this has been tried, we won’t know for sure how it’s all gone until the recovery is over and we’re doing rehab. But here’s what our surgeon proposed:

1) Splitting the femur: because a prosthetic that fits Echo could not be used, they used the smallest pediatric prosthetic they could get. It was still too big, so to make it fit, they had to split the femur. There’s a ton of wire and, I think, some donor bone grafts holding it all in place, but still. For a person with average bones, that would necessitate 6-8 weeks of no weight-bearing activity, but Saul-Wilson means bones are soft, so the surgeon is being very conservative and there is no weight-bearing activity for 12 weeks. Until we have a few check-ups and x-rays, though, we can’t be sure how the healing is going or when weight-bearing will be safe to try. This is in contrast to operations with properly-sized prosthetics, where you are weight bearing, at the latest, the day following the surgery.

It’s also a lot more painful, obviously.

2) Bone grafts to build a rounder hip joint: Honestly not sure there would be another option here. It’s not an osteotomy since, as I understand it, they’re using donor bone, but how the healing goes is still an open question. I can tell you that as I write this, 6 weeks after the first surgery, Echo is comfortable lying on that hip. (They haven’t been able to lie on their right side for a long time, so this is significant.)

3) Lengthening the femur: This one has been the hardest, IMO.

Initially this was presented as a personal choice: would you like to be an inch taller? Echo went back and forth and eventually decided to go for it. An inch isn’t going to make a huge difference, but there are times when it would make life easier (like reaching a bathroom tap or a light switch etc.). We were told that the main risk is nerve damage but that it was minor, so long as you didn’t go for more than 1″.

In the hospital after the surgery, we were told that it was also necessary to provide extra stability given the whole splitting-the-femur thing. Who knows what’s true.

What I can tell you is this: yup, nerve damage is a risk. It happened. A few days of numbness followed now by at least ten days of burning and pins and needles. Not constant, but there, and worse when they’ve been doing physio or spending time sitting up. Lying down tends to make it better, but not always. They’ve been put on a medication to help with the discomfort of the nerves repairing themselves.

But it’s not just nerve damage. Echo’s also had intense muscle spasms (like both legs flailing around the hospital bed, and them unable to control it) and excruciating pain as the skin, muscles and tendons are all lengthened an inch the course of a two-hour operation. In retrospect this seems obvious, but we were blindsided.

There are medications that can control the spasms (baclofen, if you’re wondering). And there is a very strong medication that can be used short term to assist with the pain of the muscles stretching (cyclobenzaprine).

But in the meantime you’re not going to be able to bend your knees, because that will cause the muscles to stretch even more and, trust me, it’s a kind of pain you don’t want. Also there’s just a limit to how far they will stretch.

Six weeks after the first surgery, Echo could again bend the right leg for about an hour without substantial discomfort. Four weeks after the second surgery, some range of motion is coming back, but the left leg still needed support and couldn’t bend fully. This means that for a period of at least a month and probably more afterwards, you will need a wheelchair with elevated leg rests.

(You might think we’d be warned, but no. We discovered this after the first surgery when we had no safe way to get Echo home. An hour on a highway with a footstool propped under the operated leg led to howling with pain that we could do nothing about. Going back for the second surgery with the proper wheelchair was a lot easier. Coming home again was another story: the beginnings of nerve damage plus the muscle stretching made remaining in one seated position for more than a short period also excruciatingly painful, and Echo spent most of that drive screaming, and again, there was nothing we could do about it.)

The combination of no-weight-bearing plus no-knee-bending means that many of the things Echo needs to do–most importantly getting on to a toilet, but anything that involves leaving the bed–requires two adults nearby to assist: one to hold the transfer board steady, and one to support the legs. We’ve talked to occupational therapists and there are no tools that make this a one-person transfer, so in the meanitme, we’re arranging multiple visits each day–in a pandemic, yes–so Echo can pee. If that doesn’t count as ‘essential,’ I don’t know what does, but honestly, it’s a bit nervewracking.

Basically, if you can wait for a custom hip prosthetic, do.

If you can’t, line up a properly sized wheelchair with elevated leg rests in advance. Get the contact information of taxi companies that can buckle the wheelchair in, because you are not going to want to do a transfer into a car when you can’t bend your knees. If you have access to a transportation service that can accommodate stretchers, that would probably be even better, since–trust me–you are not going to want to sit up for a while. At home, you will need a commode with moveable armrests, and it will need to be as close in height as possible to the bed you are using for recovery. They should be positioned as close together as possible. You will need a transfer board. And you will need to have scheduled visits from two people at a time a few times per day who can help you transfer to and from the commode (and the wheelchair). Depending on what the hospital has available, you may want to bring your own commode in with you (we did, for the second one, because the hospital commode was enormous and it was difficult to get on to and caused Echo pain).


I feel like I’m not processing any of it. Not really. The hardest parts are just developing shells and becoming strangely hollow flashbulb memories, small moments of terrible encased in a protective coating and surrounded by weeks of fog. (Echo ready for the second surgery and waiting for the surgeon to come get them, and asking me, over and over, that it wasn’t too late to back out, we could still change our minds and go home, right? When they said that they were scared but still willing to do through with it, not because they trusted the doctors, but because they trust me. When the muscle spasms hit after the first surgery and we didn’t know what was happening, and I was trying to hold their legs still(ish), and she was crying from fear that the pounding would damage her split femur, and asking me if she was going to die. That first night after the second surgery when the nerve block wasn’t working, and I stood at their bedside, waiting for the light on the pain pump to light up so I could press it again and she could get a bit of pain relief and maybe a bit of sleep. The agony of their muscles stretching out, and none of the pain medications working, and them wailing, “why didn’t they tell me this would happen? I would have said no! I liked myself the way I was!”)

Their pain is much better now. They hadn’t been able to move their right leg independently for months prior to the surgery, and now they can, which is wonderful to see. Mobility in the knees is almost back to normal. They can spend much longer sitting up, and it doesn’t hurt, which also wasn’t true before the surgeries. We’re weaning off the pain meds, instead of just ramping them up every few weeks because the pain was just getting worse and worse. Things are already better than they were in November in a lot of ways, and if the physio goes well and the bones all knit up properly, I think by the summer it will all have been worth it. But there’s a lot contained in that “all.” It’s a very big “all.” I would have done almost anything to avoid it.

I am sewing and reading a bit, but it’s fractured and hard to put words to right now. I’ll think about a review or a post, and then the alarm will go off for meds, or a PSW or nurse will call, or we’ll have a virtual doctor’s appointment, or I’ll need to schedule a grocery pick-up or prescription renewal, and there it goes. Time has also lost all meaning; yesterday feels like forever ago, but at the same time, I can’t believe we’re halfway through the first 12-week recovery period already.

I hope you’re all well, and I can’t wait to have the energy and brainspace to write about other things.

fun facts about hospital stays in the time of covid-19

  1. Visitors don’t really exist. In the hospital Echo was at, most patients were allowed one visitor for one visit for their entire stay. That was it. For most of the patients, this was fine; they were cognitively fully functional and were, physically, ok on their own for relatively short 1-2 day stays. For one of Echo’s roommates, who had had a traumatic brain injury that she mentioned loudly in conversation at least five times per day, it was not fine. She could not make heads or tails of the medical and physical therapy instructions she was given, could not remember them, and could not relay them accurately to her husband. But that’s the rule: no visitors.
  2. If you are lucky enough to be or have an ’24 hour essential support’ visitor, then yes, you will be able to have that person by your side throughout your stay.
  3. But they will not be able to remove their mask for any reason at any time, including to eat or drink or sleep. They will be told to eat before they come to the hospital, and after they leave. Which is an interesting trick if you’re there for 24 hours or more.
  4. The family/visitor lounges are closed. Essential care supporters will be ‘sleeping’ in upright chairs in the room with the patient. Actually they’ll spend about 23 hours per day in that chair.
  5. You will not see covid patients. This is not because they don’t exist, dumb-ass; it’s because covid patients are in isolation.
  6. A large number of covid patients in isolation means that private and semi-private rooms exist only theoretically, and you will not be able to access one, no matter what you checked on the intake form.
  7. If the ‘essential support’ person needs to eat or drink, they will be told to leave the hospital to do so. You can try sneaking into the half-closed food court and buying meals there, but technically it’s only for hospital staff, and you will get a stink eye. Or you can try finding a fast food place that is serving food, but the city’s in lockdown, so you will still need to eat your food outside. In the cold, or the rain, or the snow.
  8. If you do sneak down to the food court for a snack, be warned that the posted hours may not be accurate; restaurants will open and close at odd times, some will never open at all, and your best bet is to eat something large-ish around mid-afternoon in case everything is shut at dinner time.
  9. Don’t leave for too long, because your kid can’t get any other visitors, so now they’re alone, and possibly in pain. And scared. And god knows that’ll be the fifteen minutes the surgeon will drop by to talk.
  10. You can’t eat, drink, or sleep in the hospital; you’re only allowed to use one bathroom down the hall; there’s nowhere to wash your hair or brush your teeth; but you will be put to work with bedpans, hygiene, transfers, and so on.
  11. There will be nowhere to buy socks, underwear, fresh clothes, books etc. if you run out.
  12. If you run out of clean face masks, you will not be able to get more from the hospital. Maybe you could buy some from the pharmacy?
  13. Until they change the hospital face mask rule literally in the twenty minutes you are outside the hospital looking for somewhere to buy clean socks, and now you will only be allowed back in the hospital if you are wearing a hospital face mask.
  14. There will be line-ups at the elevators due to the ridership limits. Those line-ups will be worst first thing on weekday mornings, and basically vanish on weekends. Time your snack or prescription breaks for mid-morning, mid-afternoon, evenings or weekends. Finding an elevator going down with space on it will take a very long time on weekday afternoons; just get on an up elevator and wait for it to turn around.
  15. Unaccountably, even in the hospital, there will be one person hanging right over your shoulder while you wait in the elevator line.
  16. You will not be allowed to wait inside the hospital during the surgery or immediate recovery, and it doesn’t matter if it’s pouring rain or below zero. Also, all of the local cafes etc. are closed–lockdown, thank you!–so there will be nowhere warm or dry for you to be. And no one can or will tell you about this in advance, so you will not have a hotel room on standby or any other plans.
  17. In normal times, there is a pre-operation Hip Replacement Class at the hospital. During covid, this class will not be held. They will not mail you the handout in advance instead. You will get it in the hospital, after your surgery, including the checklist of essential recovery items that you will not have had time to buy.
  18. Not that it applies to you, because it’s 99% for standard hip replacements, and your kid didn’t get a standard hip replacement. Thanks to their size and condition, the surgeon had to split the femur. They will not be able to put weight on that leg for three months, give or take. The only part of the booklet that does apply to you are the bed physio exercises that can be done lying down.
  19. That’s not really a covid thing, though.
  20. Everyone you talk to will have a different set of rules for you to follow. When you point out that the rules don’t match from one hour to the next, they’ll shrug and tell you that the rules are changing very fast and no one really understands what they all are. Eventually, you’ll stop asking and just do what you need to do and hope no one kicks you out for it.
  21. You will not be able to kiss your kid. Because, mask.
  22. There are so many people waiting for a chance to have their surgery done, though, that despite how challenging it is, that every so often, walking down the hallway or watching your kid sleep, you’ll be overcome by the thought that, holy crap, the surgeries have actually happened, and you’re not just waiting for a date and hoping it doesn’t get cancelled. Knowing that there are thousands of people waiting at home for the chance to be where you are will hit you at odd times for no obvious reason; in the middle of a paragraph in a book you’re trying (and failing) to read, trying to stay 2m apart from other customers while waiting for your tea at the Second Cup, doomscrolling through all the evidence that the latest lockdown isn’t working. Holy crap, it’s done. It’s done forever. We won’t know until March at least whether this will do everything we hoped, but they can’t put the old hips back in, no one can take the surgeries back.

Happy Old Year’s End

New Year’s Eve has a whole other flavour this year, doesn’t it? Less “Hurray! Let’s celebrate the start of another year!” and more “Is it dead yet? Are we sure? Should we set the corpse on fire to be on the safe side?”

I’m drafting this in November–already looking forward, yes, but also anticipating that December is going to be busy. But if there’s one thing that’s been clear for months now, that we can all come together around, it’s that 2020 has been shit. So I feel pretty confident that this post will still be current and appropriate on Dec 31.

I know, you know, and everyone who passed elementary school math knows, that the pandemic isn’t over yet, and we’re not going to flip a switch on Jan 1 and be at the end of this long hard strange year we’ve gone through. (Remember the Australian wildfires? Can you believe they were only just about a year ago?) How long it takes to end this chapter is going to depend on, basically, how successful anti-vaxxers have been in misinforming people over the last few decades about one of the biggest medical triumphs our species has ever had. I don’t know about you, but I will be getting vaccinated as soon as I get to the top of the list for one. Please, dear god, yes, let’s with all possible haste get back to a world where we don’t view strangers in public as dangerous infection vectors.

Still. Even knowing that the transition from Dec 31 to Jan 1 isn’t any kind of magic, I can’t wait for it to happen. I’m ready to burn the damned thing in effigy.

The surgery saga is too complicated to get into much detail right now; both surgeries were completed though, and we got home from the second one in the evening of Christmas Eve, but much too tired to have all the regular celebrations on time. So we did our Christmas Eve traditions on Christmas, opened presents on Boxing Day, and had our dinner on the 27th. We’re still acclimating to the recovery requirements. The surgeries were more complicated than a standard hip replacement, so there’s no weight bearing activity for at least three months–and given that this is is the first time this surgery’s been performed on someone with Echo’s skeletal condition, I’m taking that three-month requirement with a grain of salt so that we’re not too disappointed if it turns out to be longer. It’s going to take time to establish a new routine and feel comfortable with all the new processes for meeting their daily needs, but the hardest part is (/should be) behind us.

What I will say for now is how strange it is, to have had surgeries (or supported someone through surgeries) in Covid’s second wave. On the one hand, I’m so incredibly grateful that we were able to have the surgeries at all, given the restrictions and cancellations that so many have had to deal with. On the other hand, being in a hospital right now is hard. The rules on visitors, masks, eating, reduced space availability, lockdowns in the surrounding areas, all made everything so much harder, and these surgeries were already going to be extremely difficult. I’m still waiting to find a still point between those two poles from which to process the rest of it, and in the meantime, I’m mostly just numb.

I hope all of you are whatever passes for “OK” this year. I hope you and yours are safe and warm, fed and loved. I hope 2021 returns to you as many of the things you miss most as possible.

organizational culture is toxic

I know! Months between posts, and then two in one week.

This isn’t a new thought, but it’s one that keeps coming to me, and I’m curious to hear what you think:

Organizational culture is toxic.

It fosters us-vs-them thinking. The loyalty it creates among members makes it hard to, for instance, speak out against bullying or abuse. But it can also turn the world outside the organization into an enemy.

This is true for any scale of organization, from the family to the nation-state. But it is particularly damaging when the organization in question exists to serve the community or ‘other’ it’s standing in opposition to.

Police forces are the most obvious examples: police culture encourages an us-vs-them mentality in which police officers bond together against outsiders, even though the ‘outsiders’ are the reason they have their jobs in the first place. And you end up with the ‘thin blue line,’ and police brutality against ‘outsider’ (read: client) populations considered dangerous due to bias and bigotry.

But the same dynamic is in play elsewhere. I’ve never worked for a government agency, for instance, where some version of us-vs-them organizational culture isn’t in play and doesn’t lead decision-makers and leaders to treat the communities they exist to serve as trouble-makers they need to subdue somehow. In the city I work for, this has most recently and most publicly manifested in city councilors verbally attacking “citizen activists” who delegate to council. When delegating to council is their right, is a part of active citizenship and democracy, and they represent the communities that council exists to serve. It’s not just council, of course. I’ve heard managers say the same: “so-and-so is an activist,” as if being an activist who cares about your community is a crime.

As destructive as this is, it’s obviously much worse from the police, because officers are delegated to use deadly force and have wide latitude in how to apply that authority. Citizen delegates are criticized and humiliated, but not shot.

It struck me today that organizational culture can be deadly in medical organizations too, though, particularly for disabled and chronically ill people. They can’t shoot you, but they can withhold and deny treatments, prescriptions, appointments, etc. Government policies and regulations sometimes require them to do so. This puts medically vulnerable people in needing to stay on the good side of the very people who have often done them the most harm.

One example: until the beginning of the pandemic, I’d used an insulin pump for years. It worked well fifteen years ago, but my blood sugar control had been terrible for years. I’d often end up crying during appointments because nothing would work. I tested frequently, I diligently used correction boluses, etc. But my blood sugar meter wouldn’t reliably connect with my computer so I could only access my numbers during brief doctor’s visits, and it takes time to make changes to pump settings–time that I don’t have, as a caregiver of a disabled kid, and as someone whose insulin sensitivity fluctuates frequently. What works one week often doesn’t work the next.

Provincial regulations require that anyone using an insulin pump see a specialized endocrinologist’s office every three months at least. Pumps are expensive, and private insurers no longer cover them here because of the government program. So: for years, I was required by law to take half a day off every three months to drive to a doctor’s office 45 minutes away where they had no information that could help me and did everything they could to discourage me from going off the pump.

During the pandemic I insisted. My blood sugars are now normal–or close to it–for the first time in over ten years. And now I have the freedom to go to any doctor I want. I don’t know what kind of long-term damage I’ll have sustained from a decade of bad blood sugar control, but I felt both completely powerless and also dependent on the people who were insisting I continue using pump therapy.

They’re not evil. They just have an organizational culture that seems pumps as always and inherently superior and any patient who sees otherwise is a trouble-maker.

Another example: After waiting since August to get some questions answered about Echo’s post-surgery care, I threw a (very temperate) fit when the pre-op was delayed (again, to three days before the first surgery) and asked in strong terms to be referred to someone who could answer at least a few of our questions so we could make even some temporary financial plans.

I was told a social worker from the hospital would call, and one did.

And she was rude, condescending, and basically acted as if being a caregiver in need of information was shameful.

In essence she acted as if her job was not to assist the patient (Echo) or the patient’s support system (me), but was to protect the hospital against foreign influences. I wasn’t the reason that she has a job, you know; the population her role is meant to serve. I was an inconvenience getting in the way of their internal processes. Organizational culture at work yet again.

It doesn’t have to be this way, and it isn’t always. Echo has some superstar doctors and physiotherapists, and we treat them like gold because we know just exactly how precious that is. And I’ve somehow managed to survive working for several government agencies at different levels over 25 years while keeping intact my belief that my salary comes from serving the communities and protecting their environment (which has at times gotten me in trouble with my managers).

I got pretty mad at this lady. Not to the point of swearing and yelling, though I wanted to. I just hung up on her.

Imagine; I’ve waited over three months to have this conversation with someone who can provide some information on what kinds of support might be available in our situation, and I got, “well if it’s going to be THAT hard maybe you should postpone the surgery!”

You are dependent on people for the things you need to survive; required, by government policy and regulation, to be dependent on specific people who can choose to withhold what you need to live. It’s like being required to rent your housing from the police. You better be nice to them. Don’t complain too much about the heat or the windows or the leaky roof. Don’t demand repairs. Pay up promptly and with a smile every time and tell them how much you like their sweater. Don’t complain when the rent changes every month, or the rent due date, or the square footage on your apartment, because they’ll kick you out or shoot you and you will have no recourse. If they want to put the shower in the master bedroom closet, smile and have a productive conversation about where you would rather have the shower go, and be prepared to shampoo your hair surrounded by your dress pants because they don’t have to listen to you.

If you do make a demand, and they get mad, you’d better swallow what you’re thinking until after they’ve made some attempt at a repair. Because they can kick you out and there’s nothing you can do about it, and you’d rather have a shower in the closet than nowhere to live.

It’s less than a week until the surgery date (caveat: so long as the hospitals aren’t shut down again) and we have no information about the recovery. My attempt to get some answers was met basically with a flamethrower. And I’d better swallow it and be ok, because if she makes good on her quasi-threat to postpone the surgery “since this is going to be so hard for you,” it’s my kid who’s going to suffer for god knows how long with terrible pain that is worsening all the time. Or even if they’re just obnoxious to them in the hospital.

But it all comes back to the same problem: organizations developing a culture that stands them in opposition to the community they were created to serve, where the identity of belonging creates barriers to fulfilling a mandate, where clients and communities are re-cast as ‘outsiders’ and ‘trouble-makers,’ and leaving those communities with their needs going unmet by the very people paid to meet them.


First, I’d like to say: I know all of the approved ways of managing stress and anxiety.

I know you’re supposed to move, ok? Exercise! I know. I know about healthy eating and getting enough sleep, connecting with loved ones, spending time in nature.

As it turns out, when you’re in the middle of a pandemic with a kid who can’t move, absolutely none of it applies.

Exercise! Sure. Except I can’t leave Echo* alone for very long. A walk around the block or to the library is about as much as I can manage, and that not very often. Echo is using a wheelchair now, and getting out with them is challenging–them plus the dog is extremely challenging, as our beloved Impossible Puppy loves nothing more than to careen from one side of the sidewalk to the other, investigating every passing odour, planting herself to the ground through her nose until they are fully understood, and heaving the wheelchair to and fro in her wake. Yes, she is ten pounds. Friends, she knows how to use them.

Healthy eating: Sure. I will get to all that fresh, healthy produce once I’ve finished making the next round of doctor calls, refilling prescriptions, and chasing the puppy off their bad hip for the tenth time today. (“Bad hip” being a relative term; the “good hip” is, right now, the one they can still move independently, but it still hurts, a lot.) Sleep would be grand. I would dream of sleep, if I could get to a dreaming state reliably. It is stress, in part; it’s also that, now that Echo’s bedroom’s been moved to the main floor (stairs are out of the question; the pain is terrible, and their balance is worse. I lived in terror of their falling), I can’t get up and out of bed and go do something else when sleep is hard to come by. Echo’s not sleeping well either, for obvious reasons. There is one position they can normally sleep in.

Let me describe this in more detail:

They can’t lie flat on their back; the angle causes too much pain in their hips (incidentally, this makes hair washing a treat, since the only gizmo we could find to facilitate hair washing for someone who can no longer get into or out of a shower necessitates lying flat on your back. So instead of this being a relaxing break from difficult circumstances, hair washing is a painful exercise we carry out only when absolutely necessary). Lying on the side of their ‘bad hip’ is out of the question. So they can sleep right now only when positioned carefully on their ‘good hip’ in such a way that the bad hip is also supported relatively comfortably.

They start in a seated position, then use their right hand to lift the right knee up slightly, and maneouver the left foot in underneath it, then down towards the ankles so the legs are crossed there. Then, very very slowly, they lean back and to the left to use the weight of the body to lever their entire self to their left-hand side. There is normally some pain, even on a good night, as the hips are jostled around, but if they move slowly enough they can get to a sleeping position. We put on the TENS machine and I bring over an ice pack or two for anywhere that needs it and we cross our fingers for a restful night.

On a bad night, even this doesn’t work. Getting into the sleeping position involves screaming and crying for an hour. Or once in it, their ‘good’ left hip starts to hurt, and they can’t sleep after all. There have been nights without sleep from pain.

So: if Echo is asleep, I can’t leave my room. Or I could, but I’d risk waking them, and starting all over the whole process of “I can’t find a way to lie down that doesn’t hurt.”

Exercise, nutrition, and sleep, then, are pretty well out, for stress-reduction purposes. Nature is out, except again for short walks. Connecting with loved ones is, shall we say, fraught. In person is out, except for brief distanced visits. Over the many months of working from home I have come to hate video conferencing; I have to do so much of it for work. So it’s texting and phone calls, when we can, with friends who are also dealing with hardship and loss and have less to give themselves.

No need to say that having someone over to give us a hand or even just be a novel face for Echo to interact with, instead of having to look at me and only me day in and day out, is out of the question.

I have been doing some sewing; mostly a stack of post-surgery pants for Echo.

(Surgery hasn’t happened yet, but we have a new-new date: Dec 3 for the bad hip. There was one pre-surgery appointment last week, and there should be another one this week. In fact I am writing this post as a way to distract myself from hovering over the phone, as we’ve been told they should call with it today. I should be working; I can’t work. We’ve been told this date will only be changed again if the hospitals need to close. Of course, Toronto’s covid numbers are surging and the hospitals are filling up with covid patients. So.)

Otherwise I haven’t really been sewing clothes. The pandemic wardrobe I sewed myself in a flurry in the spring is still enough. According to the 30 Wears app, I’m just hitting 30 wears on the first of those makes.

Also, I’ve lost any sense of what constitutes appropriate dress over the past nine months, a fact that normally comes home to me most forcefully when I’m in line to pay for my groceries. Wait a minute–does this shirt go with these pants? Are these pants? What does ‘going with’ mean? Is it gauche to wear socks with this outfit? Did I remember to comb my hair today?

I should probably wait before sewing myself any clothes, is what I’m saying.

What I have been doing for stress relief, mostly, is embroidery.

Also a bit of art journaling, but mostly embroidery.

Mostly with scraps and stash items. There were some projects I was a bit short on, like the fiddlier goldwork threads, and some finishing items needed, like the pendant fittings, but on the whole, it’s been scraps and stash.

First: goldwork bugs, inspired by a beautiful goldwork reindeer in a recent issue of Inspirations Magazine, which I told myself I could consider after doing some kind of goldwork skills development with the materials I already had.

Second: A stumpwork pouch, just because the colours and fuzziness pleased me. Stash linen. I did have to buy a zipper. The actual embroidery for this wasn’t difficult or time consuming, so I plan to make another one, this time with more care for the closure.

Third: Because I enjoyed the turkey knot stitch so much, a bunch of little stumpwork bees. Yes, they are three-dimensional. The wings are wired. Stumpwork at such a small scale is very challenging because everything is so fiddly and all the stitches are tiny. But they worked out well. The above pendant is about half an inch in real life; it is a teeny, fuzzy stumpwork bee about the same size as an actual bee.

Fittings for embroidered pendants were purchased from Nunn Design, and were very easy to use.

Fourth: Applique pouch. Not done yet, obviously. Eventually it will be a dogwood applique. The pouch is then quilted. The ground fabric is leftover from a suit I made last year, and the patches are all scrap as well, as is the lining and batting.

Fifth: A floral cross-stitch on this black bamboo jersey top I made years ago, and never wore. Because it’s black, friends, and I’m allergic to solid neutrals, except for small quantities of warm greys and some browns. I used a bit of 14-count water soluble canvas and paper stabilizer and stitched over two squares to make it a bit chunky. (The shirt, by the way, is a Renfrew, modified to have a gathered front.)

Sixth: A mountain of holiday cross stitch projects: cards, tags, decorations. Because. Look, if you want mindless busywork to keep your hands occupied and your head focused on something manageable, cross stitch does the trick.

And if you make a mistake, you just pull the stitches out.

I do realize that this is a large pile of embroidered objects and I can’t possibly use all of them myself. I mean, one santolina pouch is already questionable, but two? Three stumpwork bee pendants? What am I going to do, wear them all at once?

No. I’m going to be giving a good chunk of them away. The function for me is just distraction and busywork so I don’t go crazy worrying over things I can’t control. Once they’re done, they no longer have a function for me. A few I’ll keep as remembrances of 2020, but most I’ll be glad not to see again.

Handwork is useful because it’s small, portable, doesn’t need any electrical devices, can be done well with small scraps, and is one-size-fits-all, so easier to give away. I’m hoping that this will be something I can do in the hospital during the surgery and immediate recovery. I guess we’ll see. Everything is still up in the air; if the surgery goes ahead on Dec 3, we still don’t know much about the recovery itself, except for “3 months in a wheelchair per hip with no weight-bearing activity.” And even that’s a bit of a guess, since the skeletal condition necessitating the hip replacements could very well complicate healing, and there’s no way to know as there’s no medical record of someone with Echo’s condition getting this kind of surgery.

I’ve been staring at this screen for an hour trying to think of a neat and tidy ending (of note: the deadline for the appointment call passed while I was doing so, so it’s time to harass doctors’ offices again), but the only thing we know with any certainty about the next year of our lives right now is that Echo’s pain will increase until the surgery.


*Echo/they is not really new, but they’ve been asking me not to make any announcements or use the new names or pronouns online for a while. Until they asked me to stop using the old ones recently, and weren’t keen on the idea of an announcement. So yes, I bet this is confusing, but there you go.

Commanding Hope (review)

(This review written in exchange for a free e-version of the book, provided by NetGalley.)

*113th climate book*

Climate activists tend to obsess over a small number of theoretical subjects:

  1. Is capitalism the devil, or our saviour?
  2. Is climate change its own separate issue, or the end result of colonialist patriarchal white supremacy? and
  3. Do you get better communication results by scaring the pants off people with the truth or giving them a boost of slightly deceitful hope?

Commanding Hope falls solidly in category three, though with occasional flourishes in 1 and 2 (short version: capitalism is not the devil, but climate change is an end result of colonialist patriarchal white supremacy).

What Commanding Hope offers to the (what one might assume is the) over-saturated hope-vs-fear marketplace is a detailed theoretical and philosophical discussion of the kind of hope climate activists should be aiming for, and how to operationalize it. Hope, he argues, should not be conceived of in a passive “hope that” way (eg. “I hope that it doesn’t rain tomorrow”) but in an active “hope to” sense (eg. “I hope to run a marathon one day”), where we look all of the dispiriting facts in the face and fully acknowledge how dire the situation is, but find a path to agency through acknowledging the remaining uncertainties and how many of them depend on human action.

In this sense, it’s not particularly new; Christiana Figueres argued much the same in The Future We Choose from earlier this year (and repeats the message in her podcast, Outrage and Optimism), and Rebecca Solnit beats the same drum in almost everything she writes: we need to hope, we need hope to function (and functioning is so important given our circumstances that it’s worth some internal state manipulation to get there), but the hope needs to inspire action.

Where Commanding Hope differs is in the several chapters analyzing positive psychology, philosophy, history, complexity science, Tolkein, Mad Max, and group psychology to analyze how we might best leverage the influence we have. The readers learns about WITs (Worldviews, Institutions and Technologies) and their combined ability to maintain the status quo; Donella Meadows’ leverage points, which argues that switching worldviews is incredibly effective and extremely difficult; Terror Management Theory and Immortality Projects; and the impact that fear and anxiety have on anger, polarization, and authoritarianism. He shares some tools he and his colleagues at UW have developed, including mindscapes, ideological state-spaces, and other tools to analyze and present worldviews to find points of convergence and agreement that can build a sense of “we” on our deeply fractured planet. In other words, it’s not just rhetoric (though there’s plenty of that); it’s academic analysis and tactics.

You may or may not appreciate academic analysis and tactics. But if you want them, this is where you’ll find them.

He also fully acknowledges how much of our success or failure on climate rests on our ability to tackle systemic social inequalities of all kinds (of course, no mention of disability; that docked a star). If fear drives anger and polarization, and if a positive future for all means being able to convince the vast majority of humans that the future contains more abundance than scarcity, then increasing economic inequality and insecurity and discrimination of all kinds must end. That is a mighty tall order. It is probably harder to end all forms of discrimination in the next 30 years than it is to fuel-switch our homes to electric heat pumps and our cars to batteries. That doesn’t mean he’s wrong–he’s not wrong–but these fights have in some cases been going on for centuries and have barely budged, and a bunch of you probably don’t even know what I’m talking about when I say “ableism.”

If Eric Holthaus’s recent book The Future Earth showed a positive path forward for humanity with few nuts and bolts about how to make that happen, Homer-Dixon’s book writes a plausible version of that path. However, “plausible” here doesn’t mean likely or even probable. He makes it clear throughout that the path to a viable and desirable future for our children is no better than 1/5 and likely less. Not that this lets us off the hook. On the contrary. If your child were to be diagnosed tomorrow with a fatal cancer, for which there was one treatment with a 20% chance of success, you would move heaven and earth to get that treatment for your child. Why so many parents wash their hands of climate advocacy I will never understand. (Homer-Dixon argues that the desire of parents to protect their children is actually a universal bedrock value we can depend on to help unite us to act on climate; I wish I could be as optimistic on this point. A) abusive parents; they exist; I had some. B) many parents are apparently fully willing to expose their beloved children to unimaginable future harm so long as they can go on being able to fly to Spain on a whim indefinitely. So.)

One other issue I had, and it’s not just with this book, is the repeated statement that most people are good, or at least see themselves that way, so it’s best to take a generous approach to difficult conversations. And that’s not wrong, precisely. It’s just highly vulnerable. Let’s say 99% of the time it’s absolutely correct, and you’re talking to people who genuinely believe that the outright pursuit of maximum wealth is a social good and that government is evil. Sure, try to find common ground and work from there. That makes sense.

But some people are actually evil, and unless you have a base threshold for where that is and how to engage with those people, you can be sucked endlessly into debates on fundamentals with them that absolutely stall all action and even hope for action for all time. See: Exxon. They will never see themselves as evil, but Hitler also didn’t see himself as evil. That can’t be the standard. At what point do we draw a line and say that actively facilitating worldwide ecocide is evil and a punishable crime?

At any rate, and in an effort to conclude this review on a less wrist-slashing note: He’s not wrong in his general thesis. People do need to believe there is something to hope for, it needs to be something they can be involved in, and he has a great deal of knowledge and analysis to offer on how we might thread the 21st-century camel through the eye of the climate-collapse-and-Mad-Max needle. If you are looking to structure your climate action in a strategic and scientifically defensible way that is broadly compatible with social justice and works from the premise that very few people are actually evil, Commanding Hope is a great place to start.

A beautiful afternoon

A short statured adult in the distance, on a bench, taking a photo on a cell phone of an abstract silver and orange painting. Walker nearby.
Frances at the Michael Snow exhibit

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.

A diorama by Sylvia Nickerson; paper cut-out 3D skyscrapers in teh centre, canvas tent city to the left with paper figurines inside, above a mobile of colourful clouds, people, airplane, and words such as "I'm sorry" and "us."
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.

Short statured person wearing a yellow face mask with a bee on it; short hair; using a walker. Standing in front of a life-size diorama of human figures covered in colourful confetti

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.

a bit about sewing, a bit about not-sewing

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.

(Almost) All We Can Save: Review

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

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).

a paragraph from Under the Weather
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.

To Survive The Trumpocalypse, We Need Wild Disability Justice Dreams, Leah Lakshmi Piepzna-Samarasinha; included in Care Work as Cripping the Apocalypse

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.

Eli Clare, Brilliant Imperfection: Grappling with Cure

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. 

reparative reading, Funny Weather and a very hard year

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.

sedgwick quote

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.

reparative quote

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?