Thursday, September 29, 2016
Making My Invisible Disability Visible
This past summer I completed orientation and mobility training, which for me involved intersection analysis (i.e. determining when it is safe to cross when I cannot see the signal) and the use of both a standard and ID cane.
I had resisted the use of a cane for some time. There was a comfort in keeping my disability invisible to the world. I could “pass” as sighted.
When I was initially diagnosed, my doctors exclaimed “you’ll never need to learn Braille or use a cane, you won’t be that blind.” At the time, this reassurance relieved me from identifying as a blind person. Almost ten years later, I now disdain this message.
The use of Braille and a long white cane are tools that can assist people who are blind or have low vision. I may not need to read in Braille or use a standard cane for tactile input at all times. Nonetheless, Braille can help me when teaching or presenting, as it enables me to subtly reference notes. Using a cane can help me when my vision is especially poor or when I travel and run errands alone, as it enables me to more easily explain my needs to others from whom I may need help. Despite my prior trepidation, I am grateful to now have these tools in my arsenal.
Transitioning from identifying as having an invisible disability to broadcasting my ability status publicly has had its ups and downs. On the one hand, I am grateful for the ease in which I am able to ask for assistance. Without my cane, asking for help often accompanied confused looks featuring furrowed brows and gaped lips. When navigating with my cane, these looks are replaced by at least a modicum of understanding and intrigue.
The most notable ramification of using a cane is suddenly becoming more visible. People constantly offer assistance – a seat on BART, a cue that it is safe to cross the street, or a cleared path on the sidewalk. For the most part, I ignore the stares and appreciate the increased awareness of others around me. Beyond these kind – albeit unsolicited – gestures, using a cane also solicits counterproductive and patronizing actions.
My first unfortunate interaction took place in downtown Oakland during my morning commute. A middle-aged woman sat on the sidewalk surrounded by empty beer cans. She called out to me “Hey you! You! You really blind?” I glanced in her direction, to which she responded, “I see you looking at me, you faker! You’re fucking pretending!” She then belligerently began swaying her arm side to side, miming the use of a cane and mocking me, “Oh look at me, I’m blind.” Ignoring her, she retorted, “are you fucking deaf too?” For better or worse, I refused to engage and kept walking.
My second unfortunate interaction while using my cane occurred a couple days later on Cal’s campus. I was rushing to a meeting, phone and cane in my right hand and coffee in my left. I patiently waited at an intersection until I heard the auditory pedestrian signal. The woman next to me was sizing me up, eyes darting from my face to my cane. Once I heard my cue, I stepped off the curb only to be pulled back by this woman. “Wait, not yet!” I offered a wry smile, feeling pretty confident it was safe to cross. After a moment, she turned to me “It’s okay now” and we began walking. As I approached the middle of the intersection, I was yanked backwards. Not expecting this, my cane caught on the asphalt, stabbing me in the stomach. I quickly turned my body, seeing the panicked woman, scanning and listening for what triggered her. In this fumbling flurry, I proceeded to drop my coffee and phone into the street. It turns out an oncoming car was rolling to a stop, and she was concerned for my safety. The woman kindly rushed to pick up my phone and my sadly depleted coffee cup. With my possessions in hand and stares from the crowd seated at the adjacent bus stop, we resumed walking. This time, she tightly grasped my right arm and held her other hand on my back, slowing me to what she deemed a more suitable pace. At the curb she hoisted my torso, apparently signaling the step up. I waited to see which direction the woman was headed, and intentionally walked in the opposite direction, resuming my speedy pace.
These and similar encounters signal the complexities of visible disabilities. I had previously (ignorantly) envied the simplicity of visible disabilities. In college, I completed a senior capstone project on invisible disabilities. I interviewed students and faculty to share the perspective that invisible disabilities present unique challenges in academia. Professors often forget to provide the needed accommodations, and sometimes it feels as if they discount the legitimacy of the disability since they can’t see it. I believed having an invisible disability required increased self-advocacy, patience, and flexibility.
Transitioning to having a visible disability has elucidated that being seen publicly as disabled requires equal self-advocacy, patience and flexibility. Being visibly disabled highlights my disability, which certainly facilitates requests for assistance, helps others remember, and establishes the artificial perception of increased legitimacy. At the same time, being visibly disabled makes me a target. It turns out being visibly disabled isn’t necessarily any easier than being invisibly disabled.
Note: I’d like to make a couple important caveats. I am referring to invisible and visible disabilities broadly, knowing full well that the specific type of disability leads to very different reactions by others. Further, I can only speak to the experience that I’ve encountered as a young, white, Middle class woman. I also believe these reactions differ significantly based on other demographic considerations.
Posted by Jen Pearlstein at 8:24 PM