My published work/interviews, 2020

If you’re interested in what I’ve been writing outside of this podcast, check out the links below! Also selected interviews.

Articles

New York Times, April 2020: Trump Suggested ‘Injecting’ Disinfectant to Cure Coronavirus? We’re Not Surprised

Autistics for Autistics, April 2020 (co-authored with Raya Shields): We are heroes: A plain-language guide about Covid

New York Times, July 2020: I have cancer: Now my Facebook feed is full of “alternative care” ads

Thinking Person’s Guide to Autism, July 2020: Autistic with Cancer: Six Tips for Navigating the Medical System

Healthy Debate, September 2020: It took moms to hack the Covid quacks

Healthy Debate, October 2020: I’ve got cancer. Will I get the health care I need during a pandemic

Healthy Debate, November 2020: Autism case highlights urgent need to reform Ontario’s regulatory colleges

Autistics for Autistics, December 2020: 2020 has not been a good year for ABA: A research review

Interviewed on podcasts

Body of Evidence (o/p October 2019, w/Melissa Eaton & Amanda Seigler): Campaign Against Phony Autism Cures

The Avalanche, April, 2020: Autism, Disability and Access in the Times of Covid

The Big Story, August 2020: What it’s like to get cancer care during a pandemic

Documenting my cancer treatments on my podcast

July, 2020: Heaven and Earth
November, 2020: Half a woman
December, 2020: Time to breathe

“The things we don’t talk about”: A Cross-Interview with CripChat UK!


I had the great pleasure and honour of talking with Shabaaz and Pete from CripChat UK, on their podcast. We discussed autism pseudoscience, the Sia film controversy and much more.

Listen to the podcast right here by clicking the audio link below or on Stitcher here or on iTunes here .

Transcript: Transcript_CripChatUK_1
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Listen to CripChat UK on Podbean here. Great guests and discussions every week!

 

 

Half a Woman


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I wrote this after my recent surgery. Audio here, transcript below.
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Half a Woman

You have to take off your wedding ring before surgery. I remembered that as we were rushing around at 6am, trying to get out of the house on time for me to check in at the hospital. There was a lot to remember that morning: what clothes to bring, my health card (but no wallet), the book, pen and paper, my glasses, a quick drink of juice in that last hour I could eat or drink anything. Then there were the big hugs, too many, it made me late, as the boys stood and watched me walk into the hospital. The line was short that time of day. The usual questions, the hand sanitizer, stand in the footprints at the elevators. Then I’m there on the second floor and it’s just like the last time, except it’s a new hospital, a brighter and friendlier place and throughout the morning during surgery prep we all get to know each other a bit.

Surgery then gets delayed due to someone else’s emergency taking over some rooms, but I have a bed to lie on and a book and the hope that mine won’t be canceled today. Today, I’m lucky. I’m rolling into the surgical theatre at 5pm as the nurse holds an oxygen mask and asks me to think of a place I like to go. And again, it isn’t heaven, I don’t know where it is but I wake up in the recovery room later, half a woman.

I have bilateral breast cancer. With 3 lumpectomies and an excision, there is a lot less of me there now. I didn’t realize when I first had surgery just what was going to be leaving me…all I could think of was the cancer is leaving me. I wasn’t offered plastic surgery at my first surgery but I was for the second. I wavered. It was never going to be the same and I didn’t want to get caught in a place of trying to make it be. My surgeon encouraged me though, to speak to the plastic surgeon, to be sure of my choice …so I sat in a robe in her office while she described what she would do in a series of surgeries. It was about matching their size, so they’d look more the same size.

I was a cultural studies major, I mean, grad school, I know, I understand the whole symmetry thing. That symmetry makes us more naturally attractive, they say, for mate selection, it’s evolution, we learn… an advantage. That it’s in our culture… I know. Some women fear not getting a husband, fear losing their own husband, just want to look in the mirror and feel good, see symmetry when clothed. When naked, too…some women have skin moved from their own belly, their baby bump, up to replace a part of breast, or a whole breast, there are silicon options and even 3-d nipple tattoos. One woman in my support group was told by her hospital that going flat after her mastectomy was not even an option, that’s how normative reconstruction is. She did it because she felt she had to.

So the plan the plastic surgeon was outlining, as I sat in my robe at the edge of the consult table, was to move things around, to lift, arrange, cut out a piece of muscle from my back and move it to my front, something about a spacer and if I did that one I couldn’t do some of my fitness things I love but there were other options too… and it all felt strange, alien to my body and I felt protective and a little defensive. My girls had been through some stuff lately …and the way they looked and felt? I wanted to accept them as they are. Make everyone accept them as they are. I wanted to stay whole just as I am.

At age 16, my mom enrolled us in a mother-daughter assertiveness self defense class, sponsored by the rape crisis centre in our town. In the first lesson, we all practiced saying no. Our teacher was a lovely, friendly, handsome woman whose nickname was Mike, and she coached us through. Louder! Say it Loud! We held up our fists as protection, we kicked, we shouted NO! As students, we tried not to laugh as we “attacked” each other in the drills, it felt funny to touch that way and at first we were apologizing for pushing at each other, lifting and flipping, going on the offense, the defense, but these were things we needed to do to each other to be ready for the world, by the end there were no apologies, no smiles. No came easily.

I used it, through high school, through college, at work, at parties, riding alone in the back of a cab or on line at a show, at conferences, at the library, at the pub, on the subway, in the park or in the myriad other places where men want to push women, I could push back. The word held power like, a force field around my body, a bodyguard for my girls, whom I loved. It worked in advocacy too…whether for a student or a colleague or for, myself, when the expected answer was yes but my mind said no, I thought of Ms. Mike guiding me as I kicked my leg. It’s not always a yell, sometimes it’s just nicely saying “This isn’t for me.” Both take strength.

So when my surgeon asked if I’d decided to add the plastic surgery, the word came out again. I knew that most women probably don’t say no to all that free beauty. I understand why they say yes and… I’d thought of saying yes too. But I want to keep my breasts as they are, maybe because I’m different too now. After walking through fire in chemo, radiation to come, having surgeries, going through it all…no. And I know I’ll get another ask, if I am sure or if my no isn’t just all the trauma of the past 6 months talking…that I’ll be told I can always change my mind like some do and go back for a revision later, after. After all this is…over.

And this time I don’t say no to my sisters who tell me to keep my options open, who seem worried about my symmetry, or worried that I will worry over it. I know  it comes from a place of caring but I also wish there was more space for a caring validation that we’re all worthy of love even without perfect symmetry and that those of us who’ve walked through the fire need most of all to know we are still whole, even after loss. In the booklet from the hospital this comes in one single line, like poetry, at the very end of the very long section on breast reconstruction options. And here’s what it says:

“It is also ok to decide that you don’t want any of these options.”

I couldn’t remember where I’d left my ring. In the early-morning rush, it had slipped into the flow of our household, amidst pens and meeting notes, drawings, coffee mugs, rocks and sea glass, charger cords and stacks of books. It was somewhere special, I just knew it, but where? I went to sleep that night in a post-hospital haze, to wake up in the afternoon and reach over on the bedside table. The ring was there. Our house was quiet, the guys were out. I slid my ring onto my finger and sat in the silence contemplating my hands and then my whole body in itself, in my home and in the world. A body that grew into itself, that said the nos and also the yeses and married and moved and changed, that held closely another life, and another… a body that will grow older too, if I’m lucky.

Reading Camus’ The Plague in the times of Covid

plague cu I read Albert Camus’ The Plague for the first time in university. My prof told the class that the book was a metaphor for the rise of fascism in Europe, but her interpretation didn’t ring true to me. The main point of my term paper: “actually, it’s just a story about a plague” earned me a big old C grade. Turns out I was right, though.

Camus was a writer of extraordinary imagination, and it is a sublimely comforting experience to read this book again for what it is: a story about a plague–and how we respond culturally to plagues. Somehow in his brilliance, Camus managed to time-travel through this work, capturing the last few weeks of our lives in our cities in 2020 as he describes the beginning of the plague in the City of Oran in the 1940s.

“Everybody knows that pestilences have a way of recurring in the world; yet somehow we find it hard to believe in ones that crash down on our heads from a blue sky. …A pestilence isn’t a thing made to man’s measure; therefore we tell ourselves that pestilence is a mere bogy of the mind, a bad dream that will pass away. But it doesn’t always pass away and, from one bad dream to another, it is men who pass away. …

“Our townsfolk were not more to blame than the others; they forgot to be modest, that was all, and thought that everything was still possible for them; which presumed the pestilences were impossible. They went on doing business, arranged for journeys and formed views. How should they have given a thought to anything like plague, which rules out any future, cancels journeys, silences the exchange of views. They fancied themselves free, and no one will ever be free so long as there are pestilences.” (1)

Camus is describing a timeless idea: that the kind of freedom that we enjoy in urban spaces exists because we believe in it, because we have dreamed it. The moment that we stop believing in it (as we are doing now, out of necessity), it ceases. And then when it is resurrected it’s joined by a new companion, the soft shadow of our grief.

Remember after 9/11, the saying “If we have [x restriction], we’re just letting the terrorists win”? We were all grappling with how to keep the dream alive so our cities didn’t die. The new tower was a talisman; it kept our dream aloft and our very life as urbanites viable. But it was a changed life. There was a clearly delineated before and after.

In the years after 9/11 I felt a new sense of peril, imagining how terrorism threats and fears would change the things we take for granted in the city. As days and years rolled by, I watched and waited for that freedom to disappear, feeling a punch in my gut every time a new metal detector was installed, a gate erected, a guard posted. At the same time I also felt a sense of gratitude for the parts of the before that did remain. In Toronto, I was still able to jog down the subway steps and hop on Line 1, to take a ride every day and nothing happened. I’d look around and revel in the aliveness of the dream we had made real, even as I worried that it could be fleeting.

I realize more now that we’ve always had limited control over keeping our lives free in the city, no matter how tall the tower or how big the dream. Our freedom is currently tethered by that thing that just came crashing down, right out of the blue sky (although for anyone looking up, it had been in clear plain sight). And despite the marketing jive of our modern snake oil “Covid cure” hawkers, the current threat to our freedom (the pandemic) is at its core natural—and what saves us is the unnatural, our response and vigilance to control and cure people of it. As Camus writes “What’s natural is the microbe. All the rest – health, integrity, purity,– is a product of the human will.”

The failure of so many people to be vigilant in this time is heartbreaking, as it mostly always has been during times of plague. But how many of us would have predicted that it wasn’t small acts of enemies of the state, but rather the ignorance of the crowd that has brought us to this place without freedom? Even as the pandemic was fully bearing down on our cities, people continued to walk freely on the air of a dream; as Camus put it, “think[ing] that everything was still possible,” so fearful of waking from the dream that they imperiled our freedoms and endangered so many lives.

The state responded rationally, with restrictions to save us all–from the crowd. And here we are, alone in our apartments trying to make peace with what just happened and fearing for the future. Urban life is now restricted in some places to a kitchen and a bedroom, and a view out the window at the vicissitudes of weather. As Camus wrote about Oran: “Thus each of us had to be content to live only for the day, alone under the vast indifference of the sky.”

We now wait through the horrors of this moment for the end–and at the end, for our cities to come back to life. I don’t want to give spoilers for Camus’ story, about how the city of Oran responded during and after the epidemic, but suffice to say we can learn a lot from the story itself, and from the history of pandemics in our world, about the kind of shift in our consciousness we need to be making. We need, frankly, to make a move away from regressive notions of the organic and intuitive and more towards the rational and scientific in order to steel ourselves against the next threat, to protect our cities and the wonder of urban life through practical measures and not just dreams. We will need all our scientists, our artists and advocates to make that a reality. For now, we try to stay safe, living for the day.

1. Camus, Albert. The Plague. 1991 Vintage edition. 37
2. A reference to the chapbook by Lawrence Ferlinghetti. 1955. Pocket Poets Series Number 1. City Lights Press.

Note: For another analysis of The Plague in contemporary context, please see “Albert Camus’ The Plague and our own Great Reset” by Stephen Metcalf, March 23, 2020, Los Angeles Times. It is really, really interesting!!