On our time

On the days when the hot, humid air weighs on my chest, or when my brain is exhausted after a long meeting, I walk slowly. My pace is measured and I feel other people rush by me. In the beginning it was even slower, and I remember wondering--I used to walk that quickly? 

I am moving on my time. On crip time.

(If you are not familiar with the term “crip,” pause here and read more.)

“Time is foundational in the production of normalcy,” according to feminist-disability scholar Alison Kafer, who writes on futures for disabled people in Feminist, Queer, Crip. What about those of us whose bodies and minds deviate from the norm?

I think about crip time when my gait and speech slow. I feel myself in its liminal space when I can’t find my words. I notice it in the way I am constantly planning for and managing the near future, while in the now. Will that party be too loud for me to attend? My friend suggested we meet at this restaurant, how do I propose a different one that is quieter or less crowded? I am mapping the waters of the future while sailing the present. Sometimes, I am still feeling the rocky currents of the near-past.

Several months back, I had a meeting scheduled with a friend at her office. She is a wheelchair user, and a few minutes past the hour, her able-bodied colleague came downstairs to announce that she was “running late.” My friend arrived at about twenty minutes past the hour due to an issue with her car’s wheelchair ramp. One could say that she was “running late,” but another interpretation is that she was moving on crip time. For those who rely on mobility devices, attendants and accessible architecture, “crip time bends the clock” (Kafer) to accommodate.

Crip time is also, fundamentally, about the disjointed nature between what our bodies and minds can do. It is accepting, even reveling, in the non-normative nature of things. Anne McDonald, an Australian activist who lived with cerebral palsy, wrote that “my thoughts are as quick as anyone’s...and my talk is slower than a snail in quicksand.” For her, and for many disabled people, crip time is a site of liberation. McDonald compares her lunchtimes before and after institutionalization: “I take an hour to eat lunch - not an hour to go to the restaurant, order, consume my meal, and chat, but an hour just to eat. I used to live in an institution, where I didn’t have an hour. Meals for us were done in your time, or evenfaster, six minutes per child...Long lunches are now my frequent pleasure; they show me I am free.” 

Through the lens of crip time, I have found it easier to frame and resist society’s all-encompassing push towards cure. If able-bodied time is about “progress,” of course the predominant question is “How soon until you’re better?” On crip time, we can dream our own ideas of what “better” is. We have our own framework to benchmark progress, which usually consists of “less pain, less anxiety, more flexibility--but not usually to become able-bodied,”  according to disabled activist and healer Leah Lakshmi Piepzna-Samarasinha (Care Work: Dreaming Disability Justice). 

Crip time is “time travel,” according to Ellen Samuels, author of Six Ways of Looking at Crip Time. “We are never linear.” “Progress” of mind and body is forwards and backwards and cannot be understood on normative time--it’s best not to try. Time travel takes me to imagined futures, where I consider how my brain will change in different ways than had it not been injured. Occasionally, though less frequently now, it takes me back to the moments before the accident, willing my then-self to take a different route home, to take the subway home, to not go home. I stop myself from falling into the grief of this time travel.

And indeed, Samuels writes that “crip time is grief time. It is a time of loss, and of the crushing undertow that accompanies loss.” In the early days, I envisioned my grief as waves hitting me one after another, or a bus toppling me repeatedly. I mourned the possibilities that were gone. Slowly I made long mental inventories lists of things I couldn’t do (driving, running, hiking) that I wanted to reclaim. Many of these things I can do again, in a modified way. Some things are still off the table. 

But many paths and visions have appeared that otherwise would not have. I think that crip time can be dream time. Not in a simplistic way that celebrates disability as a “gift,” but in a way that frequently pushes us to reorient the building blocks of our lives. To ask new and difficult questions. To “listen to our bodyminds so closely, so attentively, in a culture that tells us to divide the two and push the body away from us” (Samuels).

How much I’ve lost, and found, on this time.

Pushing back against the rising tide

A common refrain in accessibility efforts, both online and in physical spaces, is that “a rising tide lifts all boats.” I’ve said it myself, in many client meetings and in public presentations. The idea is that designing an accessible space or website makes it better for all users. In the case of technology, an accessible website is typically easier to navigate and more simply designed. In physical spaces, the way that curb cuts, ramps and other access features benefit people without disabilities has been well-documented as the “curb cut effect.” Sounds great, right?

But if you peer past the veneer of the rising tide, what are technologists and planners really saying? It seems that the message is “make it accessible because it’s good for people with disabilities and everyone else.”

What if equity for people with disabilities in public spaces--online and off--was reason enough?

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The same you

Earlier this year, actress Emilia Clarke, famous for her role on Game of Thrones, publicly shared her experience of surviving two brain aneurysms. In a first-person article in The New Yorker and follow-up interviews, she recounted exercising with her trainer one February morning in 2011, then suddenly feeling as if “an elastic band were squeezing [her] brain.” Her aneurysm led to a stroke. Clarke had no time for medical emergencies and brain damage. She was busy riding the wave of success from season one of Thrones. Clarke went public with her story to launch a foundation funding research into rehabilitation for brain injury and stroke for young people.

The foundation’s name? Same You.

I paused as I read the foundation’s name and mission on their website. I reflected on all of the longing and optimism wrapped up in those two words.

Same You.

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I'm done with rehab: Moving beyond cure

No one sent me to rehab, as the Amy Winehouse song suggests.

After my accident, I sent myself. Scared of the changes rapidly appearing in my body and mind, I asked for help.

I was methodical, attending speech therapy to address my slowed, foggy cognition, my sudden inability to focus and my stutter. After “graduating” from speech I moved on to physical therapy to remedy my shaky balance and consistent headaches. I wanted to feel strong again, to hike again, to resume my confident stride on cracked Philadelphia sidewalks. Finally in the summertime I began vision therapy to retrain my eyes, which, terrifyingly, were unable to hold focus and contact the way they were before. I didn’t want to be socially “weird” or “awkward,” I told the optometrist.

In short, I wanted to be me again. And I was counting on rehab to make it happen.

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Legibility, visibility: Envisioning meaningful inclusion online

This is the conclusion of a three-part series on legibility, visibility and access for individuals with disabilities. If you haven’t had the chance to read parts one and two of the series, I advise that you scroll back and start there.

As Aimi Hamraie writes in their work Building Access: Universal Design and the Politics of Disability, “access to public space is a litmus test of freedom.”

The Internet is our public space and built environment for the 21st century, much like our buildings and streets. It is where we socialize, learn, shop, apply for jobs and, increasingly, do those jobs. In the same way that accommodating people with disabilities in the physical environment has focused on adhering to standards (primarily the Americans with Disabilities Act) and serving those with legible disabilities, I assert that we are replicating this same “compliance regime” (Hamraie, Building Access) on the web.

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Legibility, visibility: "Disability made manifest"

Part 2 of 3

This is part two of a three-part series on legibility, visibility and access for individuals with disabilities, both online and off. If you missed part one, you’ll want to scroll back and begin there.

Since my accident in late 2017, I have continually wrestled with how to assert the differences that have felt overwhelming in my brain and body, but are often imperceptible to the naked eye. At times the changes have been noticeable in my slowed speech and gait, my stutter or my poor balance. But in most circumstances, especially for those who didn’t know me well before or met me after the accident, the needs that felt alarming inside of me were truly invisible. Though I didn’t have the vocabulary for it yet, I was trying to navigate illegibility.  

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Legibility, visibility: Who gets access, online and off?

Part 1 of 3

When you think of “disability,” what image comes to mind? A wheelchair user? A person using a white cane to support a visual impairment? Most of us think of individuals exhibiting difference that we can immediately perceive with our five senses. This is not an accident. Our modern architectural and sociological systems have conditioned us to associate disability with “legible” devices like wheelchairs or canes that (crucially) facilitate access to buildings and streets, asserts disability scholar Aimi Hamraie. This is most evident in the the International Symbol of Access (ISA), which was adopted in the 1970s.

To be clear, this legibility in our built spaces has been hard-won through work by disability activists. But the work is not over.

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Web accessibility: It begins at your front door

Hello there. I’d like to inaugurate this as a space to reflect on accessibility and inclusion. I write from the lens of a woman who is researching and designing for the web every day, but always bringing my own experience with disability to the table. And I know that what happens on the internet and off have everything to do with each other.

If you are thinking about web accessibility as an issue confined to your screen, I invite you to take a step back from your computer. Way back. All the way back to your front door.

Too often designers and developers view accessibility as a mere checklist or a set of standards to be met. I frequently observe an intense focus on conforming to the Web Content Accessibility Guidelines (WCAG). While the WCAG have created a common standard that improve the web experience for many users with disabilities, they also fail to push technologists to ask bigger questions about disability and access in our products and our industry. They excuse us from examining who can get through the door and contribute to the work we’re doing. I want to use this space to change that conversation.

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