When we think about accessibility, we tend to do so in terms of spaces. The first, and sometimes the only, question we ask is: can people get into this space and move around it? The accommodations we think about at this stage are physical and concrete: things like ramps and push buttons and accessible bathroom stalls.
Next, hopefully, we ask: once people are in the space, are the things they came to the space to experience actually available to them? At this stage we think a lot about sensory barriers and accommodations: about making signs and wayfinding systems available in Braille, and providing captioning and sign language translation.
Sometimes, and this usually only happens within disability-led creative and activist spaces, we also ask: how are people experiencing the things that are available to them in this space? We think about cognitive and psychological and cultural barriers, whose accommodations may include things like plain language translations, content warnings and alt text as poetry.
When we think about making spaces accessible, we tend to ignore how those spaces exist in time. When the pandemic started a year ago, a lot of events started moving online. As someone who has been housebound for the better part of five years, it initially seemed like community and culture had suddenly become available to me in a way they hadn’t been in a very long time. And I think for a lot of disabled people, that did actually turn out to be true. In the past year, I’ve watched enviously as folks have organized and participated in an overwhelming number of amazing panels and workshops and watch parties and dance parties. I myself have attended exactly two non work-related events. Which is admittedly two more than in 2019.
I’ve come to realize that even when the barriers of physical space are rendered nonexistent, and when digital space is configured as accessibly as possible, with captioning and bathroom breaks and a cameras-optional policy, as long as a space is fixed in time, it remains fundamentally inaccessible to me.
In order to explain why that is, I need to explain a little bit about my particular experience of disability, at the intersection of chronic illness and neurodivergence. I am never not exhausted. And yeah, I know, we’re all exhausted, all the time, late capitalism fucking sucks, we all have the same hours in a day and it’s never, ever enough.
Except: we really don’t all have the same hours in a day, or even the same days in a week. Over the past couple weeks, I’ve lost about five days to an illness flare. When I say five days, I’m only counting the days where I was literally unable to function — unable to cook or do laundry or even distract myself from the pain by playing a videogame, never mind send emails or prepare for talks or read research articles. All I could do was lie in bed and watch The Office on Netflix. I don’t even like The Office all that much, which is exactly why it worked, because it offered background noise without requiring anything of me.
My flare was triggered because I had needed to leave my apartment to go sign some urgent paperwork, and the weather was bad, and the place was a mile from the bus stop and I hadn’t taken the snow tires off my wheelchair yet and those tires really fuck my shoulders up after a while. On top of that I had a meltdown when I realized the building that contained the papers I needed to sign did not have a wheelchair-accessible entrance. Unfortunately, both stress and pain are triggers for my immune disorder, and unfortunately I am also literally always stressed and in pain because the world is such a goddamn inaccessible hellscape.
So despite my best efforts to manage my immune disorder on a day-to-day basis, I end up in flares pretty routinely, often because I have to do stuff that I know is going to be inaccessible and harmful to me but is nonetheless unavoidable.
And this impacts my relationship to time in a few different ways. First, the obvious: I lose time to my flares. Five days out of 14 is a lot right off the bat. At the risk of sounding like I’m endorsing disability simulations (which I’m really, really not), just imagine that you’ve been told you now have 35 percent less time in which to finish your work projects, your errands, your chores. It’s pretty rough.
I also lose time in other ways. Because I am constantly aware of the fact that I am inevitably, eventually going to come up against more of these inaccessible, unavoidable things, I know I have to pad my temporal budget with time to prepare for and recover from them. So, for example, I know that if I have to go out to an appointment, that is the only thing I can do outside my apartment that week, and I should probably also see about limiting my video and phone calls to protect my energy levels. In the chronically ill community we call this pacing, but what it really boils down to is even fewer useful hours in a day.
When you have so few hours in a day, you end up in a state of perpetual temporal debt. You are never ahead of schedule or even just keeping on top of things. You are constantly playing catch-up. And then a flare hits, and you’re plunged even further into debt. And when you live in temporal poverty, it becomes really hard to imagine spending time on something that’s nonessential. And it becomes even harder to commit to doing so in advance. In her essay, “Why I Make Terrible Decisions, or Poverty Thoughts,” journalist Linda Tirado says, “When you never have enough money it ceases to have meaning…Poverty is bleak and cuts off your long-term brain.” Temporal poverty works in much the same way.
In November of last year, Twitter rolled out a feature called Fleets. These allow users to create time-limited posts that disappear after 24 hours. Disabled folks and accessibility professionals rightly called Twitter out on the feature’s faulty subtitling and apparent incompatibility with screenreaders at launch. No one called out the fundamental inaccessibility of a feature that is designed to disappear after a single day.
A few weeks ago, I made a Twitter poll, which asked other neurodivergent and chronically ill people whether virtual events that necessitate synchronous co-presence are accessible to them. Roughly 75 percent of the people who responded said either “yes” or “sort of” — but what was really interesting to me was how many of them followed up in my replies with some variation of, “it’s fine as long as I’m not having a tired day/migraine/sensory overload/etc.” Because what those people were telling me was that no, synchronous events are really not accessible to them, but they’ve been acclimated to the belief that it is unreasonable to expect accommodation for temporal access needs.
For roughly the past four decades, disability activism and advocacy have been underpinned by the idea that disability is not a functional problem located in individual bodyminds, but rather a form of oppression and exclusion located in society. But ask people about temporal access needs, and suddenly the problem is relocated right back into individual bodyminds.
There are a few likely reasons for this. One is the reflection of a particular flavour of ableism, that traces back to how the clinical gaze conceives of, and accredits, disability. When a group of symptoms or impairments — that is to say, functional differences that interfere with a person’s ability to be normatively productive under industrial capitalism — can be mapped to a specific, tangible and somatic site of pathology, the clinical gaze accredits them as disability, and seeks to correct the physical deviation it has identified — whether or not such “correction” is actually desired by the disabled person themself.
Symptoms that go unmapped are instead attributed to weakness of character and viewed as something to be managed behaviorally, by eating better, exercising more and practicing mind over matter. (I want you to read these words as I wrote them, while rolling your eyes dramatically.) These disabilities are unaccredited by the clinic.
Predominant historical and legislative approaches to accessibility can be understood as a response to the state’s coercive regulation of accredited disability through the regime of clinical intervention. Accessibility resists an orientation to cure by seeking to create a society in which cure is irrelevant.
But where does unaccredited disability fit in? Mainstream approaches to accessibility find nothing to accommodate, nothing to resist, because for the unaccredited, cure was never on the table.
There’s also the fact that accessibility, as produced through policy and design spaces, tends to be reactive. It adapts society to support the participation of (some) disabled people. But the society those people are invited into is still capitalist and white supremacist. Participation in such a society means something very particular, which is why the Americans With Disabilities Act (for example) enshrines disabled persons’ right to reasonable accommodation.
It is why reasonable accommodations enable a disabled person to approximate normative productivity under capitalism, and why unreasonable accommodations are those that accept the inherent worth of disabled bodyminds that work and think and communicate slowly, chaotically and atypically.
Reasonable accommodations are those that do not challenge the system of capitalist white supremacy in which we are enmeshed.
This is why it’s so difficult to so much as imagine what temporal accessibility might look like. We live in a society where productivity is a tacit requisite for personhood, and machine-like speed, efficiency and regularity are prized virtues. To imagine temporal accessibility is to imagine the dismantling of capitalism.