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.
About five months into my recovery, I began to face new challenges with my balance, even though I was already in intensive physical therapy. Things that I had already won back, like walking to visit a friend or going to a museum for an hour, became difficult again. I was extremely frustrated, but this is the nature of rehabilitation--gains are not linear.
I decided to purchase a cane to support my balance when walking and standing for extended periods. With this one transaction at CVS, my disability suddenly became legible in our built environment. I felt a sense of permission to take the “reserved for disabled” seats on the bus, which I had relied on and hesitantly claimed before, worried that my fellow passengers would judge me because nothing “seemed wrong” with me. I quickly perceived the stares of people older than me, likely wondering why a relatively young woman was walking with a cane. I experienced the logistical complications of using a cane--how do you use a cane, while also wanting to carry a purse and a cup of coffee? In a piece I wrote at the time, I concluded: “The cane is disability made manifest...in its own way the cane enables and disables.”
Today my body is stronger and I don’t use the cane anymore, but I think constantly about how to assert my needs and identity in a world where we are just beginning to understand illegible disability. I worry, when pressing for small accommodations, if I will be seen as demanding or annoying because there is no visible reminder of my accident and its effects on me. I am concerned that people will doubt the validity of my experience and whether it is “severe enough.” Truth be told, I feel great trepidation in claiming the term “disability,” even as I feel so different from who I was before, and even as who I was before recedes farther and farther into the distance.
Heather Dawn Evans, a sociologist at the University of Washington, writes that “complex embodiment takes on a more nuanced dimension for those living with non-apparent impairment, as their membership (and associated stigma) must be established and re-established in an ongoing process of identity assertion.” While this framing may seem academic, diving deep into scholarship has given validity and voice to my own experience.
Learning from scholars and activists about the built environment has also helped me see that we’re replicating the same patterns of legibility online. In the third and final post of this series, I’ll write about how legibility and illegibility are playing out in digital spaces, and why we must think more broadly about inclusion. Come back in two weeks to read, or sign up for my newsletter to have future posts delivered straight to your inbox.