As per usual, I have several almost-finished posts in my drafts folder that I haven’t found the time to complete. As is also my norm, I have no good excuse other than the simple truth: that I was busy taking in the waning days of a summer that flew by and am now scrambling to catch up on everything I neglected while I was balancing enjoying the fading warmth with taking next steps to handle some medical bits and pieces.
July and August were full and fulfilling but spotted with unwelcome evidence that I’m a mortal who lives in a body that has more mileage than my years would suggest. Since I last managed an update, my husband I have covered significant ground both physically and metaphorically: a trip across the country; many day trips across the province; frequent trips within the city limits to museums, markets, etc.; and increasingly intensive planning for an international trip on which we’ll embark in a week(!). In addition to all that, I made countless trips to medical appointments and indulged in innumerable flights of fantasy to a future in which I don’t have to expend so much energy to manage the seemingly unmanageable.
And then came September. When I was a kid and, later, when I was entrenched in academia, I thought of the Monday after Labour Day as the real New Year’s and would start looking forward to and preparing for it almost as soon as the previous school year had come to end. Leaving the academy also meant surrendering the excitement, anticipation, and ritual associated with this unofficial holiday. Change is hard, and I struggled with the transition; for half a post-PhD decade, I lost the first week or so of autumn to ennui, to feeling horrible about myself and questioning every decision I’ve ever made. Simultaneously living with a serious neurological illness, a decades-long eating disorder, and multiple other life-altering medical conditions is a choice, right?!? Now, however, I’ve filled the gap once occupied by setting up elaborate note-taking systems with the lower-stakes, lower-stress tradition of making the Toronto International Film Festival a kind of farewell-to-summer staycay. Pity those school-going nerds! (Yes, that’s my jealousy talking.)
It was a good move and a great swap. Indeed, TIFF has been a fantastic and worthwhile means of procrastination every time I’ve embraced it as a full-on, immersive, dominating-my-life festival experience. I nonetheless briefly considered foregoing it this year out of nothing but a vague feeling that I should undermine my happiness by using those ten days to be productive in a more conventional sense of the word. Given the aforementioned medical stuff, though, I was ready for some distraction. I was also ready for a reminder that while having multiple disabilities and complex health is pretty frickin’ annoying, anxiety-provoking, time-consuming, and expensive, there’s power and joy in it if you let there be. Maybe because I don’t belong to any groups or circles centred on disability stuff and thus don’t have comrades-in-chairs with whom to rejoice and complain, or maybe because I’m actively making big strides to minimize and/or eliminate certain disability-exacerbating conditions, or maybe because I simply don’t try hard enough, I seldom engage in the emotional or practical work required to find the empowered bliss that self-help books and social-media influencers insist I can. I sometimes feel guilty for this and, more broadly, for not being a “better” disabled person. To be fair, I excel at the being disabled part—between my various maladies, I check lots of boxes in that regard. I’m pretty good at managing my disabilities, too. I take my meds, do my physio, and control everything I can control. I force myself not to skip appointments and am proactive about asking for referrals when they’re needed. In my bid to recover as most function and independence as I can, as well as to milk my extended benefits for all they’re worth, I’ve even expanded to massage therapy and acupuncture.
When it comes to fostering positivity, seeking community, and being a vocal advocate, on the other hand … yeah, mansions’ worth of room(s) for improvement. So when I read that the opening-night film of TIFF was a biopic of Judith Heumann, a pioneer in the disability rights movement and one of my personal heroes, I took it as a sign from whatever powers may be that I wasn’t meant to stay home and pick away at tasks with no imposed deadlines. I mean, a biopic about Judith Heumann directed by Siân Heder (whose last film, CODA, is on my top-ten list) and starring Ruth Madeley, an ultra-talented actress who uses a wheelchair? Unmissable. Not only am I a Judy fangirl, but going to see a movie about this epic woman’s life would count as research for a project I’m working on and help me in my quest to figure out what kind of disabled person I want and need to be. Now here was a legitimate excuse—not that I should have needed one, but I did because I’m me—not to deny myself the cinematic orgy that is TIFF. Now it would count as work instead of leisure. Being the all-or-nothing gal I am, I decided that if I was going to do it, I was going to do it and collaborated with my husband to come up with a shortlist of three titles to see with him. Next, I asked a friend if she’d join me for two more and was delighted that she said yes. Writing could wait until October.
Of the five, the only showing I had difficulty securing was Being Heumann. The customer-service rep who helped me with my reservation eventually scrounged up a wheelchair and a companion spot for our preferred showing, but it took some doing, and they weren’t together. Easily obtaining TIFF tickets for popular films is a disability perk I marvelled at last year and used to my full advantage, snagging seats at nearly the last minute to screenings that were reselling for hundreds on Ticketmaster (and overcommitting myself in the process), so I was shocked to encounter a speed bump. In contrast to my outrage, my unfazed husband intelligently pointed out that it was totally logical that a wheelchair seat for a disability-themed movie would be hard to come by. As we later discovered, he was smarter than either of us knew.
I’ll admit that I was in a supremely bad mood the morning of the film. We’d seen our first movie of the festival (an incredible Italian documentary called Low Lies the Land—highly recommend) the evening previous, and I was already nearing my limit in terms of tolerating crowds. As an able-bodied individual, I disliked them; as a wheelchair user, I loathe them. I can’t easily weave between slow-moving people, and I’m at the mercy of sidewalk quality, ramps, and curb cuts. To make matters worse, my seated view is of butts, an entire sea of them, rather than of faces. This wouldn’t be so bad if I were a butt person and weren’t so easily distracted by sartorial choices, but I’m not and I am. This is all to say that while I wholly believe that the organizers of TIFF did their best to make it as accessible as possible, there’s only so much you can do on a downtown Toronto street swarming with tourists, movie-viewers, and celebrity-seekers. Stopgap solutions had been implemented: for example, to accommodate lengthy queues in front of theatres, temporary ramps had been installed to allow mobility devices to descend to the street where the sidewalk was completely cordoned off pre-showing. Making my way to the documentary the night before, I could pretty seamlessly do so and therefore anticipated that my primary annoyance getting to Being Heumann would be of the slow-walking-and-loud-talking variety, not of the infrastructural one. Imagine how thrilled I was, then, when the ramps—all of them—were inexplicably blocked off. Yep. I asked several crew members for assistance; they were uniformly baffled, and no one was moving particularly quickly to resolve the issue. I was not in the mood to handle yet another barrier to participation, nor did I feel like explaining why it was kind of ironic that this mass ramp closure coincided with the rush before a film about eliminating barriers to participation.
I soon hit a dead end and opted to turn around and make a lengthy detour, my only real choice at that point. It wasn’t just me. In fact, as I approached the Princess of Wales Theatre, I began noticing more and more movie-goers using mobility devices (many appearing as disgruntled as I was—in other words, kindred spirits). The closer we got to the door, the more our numbers grew. We were a gathering battalion of siblings on wheels. My heart started pumping. Emotions swirled and swelled.
Of those emotions, it was still annoyance that reigned supreme. This peaked when I saw the fifteen-deep line for the elevator necessary to get to every level of seating but quickly ebbed when I started commiserating with my linemates. They too were unable to join the stream of able-bodied individuals casually climbing the stairs without a visible care in the world (I make no assumptions about what was happening under the surface). They too found the situation a little ridiculous. How refreshing, I thought, to share a common understanding that the decision to hold a sold-out showing of a film appealing to people using mobility devices in a theatre with accessibility quirks that inconvenience that same population should have been reexamined. I was one among many. I felt seen.
I was 100% over myself by the time I found my seat, settled in, and discovered that my wheelchair was positioned in a row of four of them. Several other areas within eyesight had been cleared of moveable chairs to accommodate additional mobility devices, and an usher told me that there were wheelchair spots on the upper levels, too. I’ve never been in a room occupied by so many wheelchair-riding folks; we were everywhere. I’m used to being the conspicuous weirdo at the back of the cinema, to sticking out like an overgrown elf upon a giant motorized toadstool, to pretending not to notice people’s curious gaze when they pass me en route to their comfier chairs with superior views not requiring a craned neck and thus a guaranteed post-movie headache. There was something profoundly magical about being here, with people I suddenly identified as mine, gathered in a public space to celebrate what’s arguably a milestone: a Hollywood film about disability spotlighting a strong, powerful, intelligent, and determined woman taking on the proverbial man and winning. A woman portrayed not as a victim but rather as a victor.
I wish I could provide you with a decent review of the movie itself. I remember it as being incredible, but I’m biased and was so lost in the novelty of this moment in time, space, and camaraderie that I remember remarkably little of it. Besides, I missed a whole chunk because I had to pee, which required—you guessed it—an elevator ride. (Nothing’s perfect.) I was also distracted by the fact that I was seated next to two women with roles in the very film I was watching. They were lovely, and I was starstruck. The Q and A featured the ultra-talented Siân Heder and the magnificent Ruth Madeley and was awesome, but this crowd-hater left before it ended because there was no way I was going to join the rush to leave; a theatre packed with wheelchairs and walkers all needing the sole elevator was wonderful from the “Yes, there’s beauty and power in this” perspective but certainly not that from the “We’ve come a long way but not far enough in terms of how society accommodates the disabled” one. I rode to ground level alone, in silence, marvelling at what I’d just experienced and vowing to myself that I’d go home and join a million advocacy groups and dismantle the ableist system and do Judy proud.
That was several weeks ago, and I’ve yet to take action. There’s been too much going on. Life is happening. My energy is limited. My health is what it is—suboptimal. I’m prioritizing what needs to be prioritized. I’m human, not (super)-Heumann, and I’m being gentle with myself for my shortcomings while also reminding myself that not now doesn’t mean not in six months, or in a year, or in ten years, or whenever is right. Thanks to Judith Heumann, thanks to the filmmaker and the phenomenal actors, most of whom live with disabilities, I’m more aware than ever of the importance of finding and nurturing community and of playing a role in bringing about productive change. The fire’s been lit, and I’ll let it glow, warming my cold fingers and frigid soul, until the time’s right to stoke it, at which point: burn, baby, burn.
