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.

“There are those with disabilities, and those who haven’t really found theirs yet”

Today’s post is inspired by Design with the Blind inMind. I recently rediscovered this TED talk by a local Bay Area architect, Chris Downey. His entire talk is fabulous. He opens with an anecdote shared in jest, during which he describes the surge of adrenaline he experienced mistaking the sounds of a golden retriever for something much scarier. Although I too humorously share what I commonly refer to as “blindy fails,” or times that not seeing leads to absurd conclusions, I think this particular case depicts something much deeper.

There is a certain amount of anxiety that the blind and visually impaired face when navigating the world. I previously tossed this up to my anxious temperament, but have since communicated with many who share the experience. We live in a sighted world, designed with the sighted in mind. This design means persons who have low vision miss cues from the environment. The consequence of which is feeling like we are always missing something. When we miss small gestures like eye rolls and subtle smiles, we miss cues ranging flirtation to disdain. Downey highlights how constantly missing what is going on around you can make for hysterical misunderstandings and great jokes, and yet, simultaneously makes the world seem foreign and frightening.

Downey coins a term in his talk - “outsights” – referring to truths he’s learned since losing vision. He speaks to several outsights, including the presence of others. While walking the city streets sighted, others mind their own business and don’t engage. While walking the city streets with a cane, others forcefully try to help, suggesting to step here or cross there. Despite good intentions, passersby often offer misinformation that leads to greater confusion. Downey describes accompanying positive shifts in how strangers treat him, such as passersby shouting, “bless you, man” and “go for it brother,” words of encouragement he never received when walking while sighted. I daresay I don’t quite share this final outsight – I have only found the attention I receive walking with a cane to be belittling and frustrating. Nonetheless, I share the outsight that often others’ presence becomes (paradoxically) more visible to the blind.

My most profound outsight has been my realization of ubiquitous struggle. I think I eschewed the reality that everyone has periods of weakness, illness, and disability. Had you asked me before I was diagnosed, I would have imagined feeling sadness, grief, and injustice at having this rare genetic abnormality. I now see my disability as a source of empathy, understanding, and humility. This fundamental belief in embracing the shared experience of overcoming struggle is precisely what motivated this blog. Pardon the cliché religious reference; we all have our crosses to bear. My outsight makes me feel less vulnerable, and enables me to overcome the anxiety of missing facets of the environment. This outsight is articulated powerfully by Downey himself: “There are those with disabilities, and those who haven’t really found theirs yet”

(Para)olympics

Although I am not especially athletic or enthusiastic about sports, I’ve been thinking a lot about the paraolympics this week. Two particular aspects of this week’s news coverage stand out to me.  First, Mikey Benjamin, a runner diagnosed with Autism, has been breaking records and is the first American to win gold in the 1500 meter, and will be training to hopefully compete in the Tokyo Olympics in 2020. Second, the winners’ medals have been made more accessible, with pellets inside and Braille inscriptions to better provide a sensory experience for the visually impaired. These, and many other, features of the paraolympics have struck a chord with me, and ignited my fervor to challenge the extent to which these feats are truly progressive.

I am inspired by the many athletes competing in this year’s paralympics.  I appreciate the paraolympics for destigmatizing disability by shifting the perception to broadcast strength and ability. However, I find myself continuing wondering why the  paralympics is separate from the Olympics. Mikey Benjamin provides an example of how often times paraolympic athletes are equally competitive to Olympic athletes, and should be viewed comparably and provided equal opportunity in competition. Of course, there is a valid argument for the paraolympics. Having separate events provides a space to excel for persons with disabilities. And, I agree, it is appropriate to have differing events for different bodies. At the same time, we have separate events for men and women to accommodate differences in physical ability; why don't we also have events for persons with disabilities?  These athletes deserve equal attention, publicity, and fame for their tremendous achievements. For this reason, I believe  the paraolympics should not be a separate event, but a component of the Olympics.

I am delighted the paraolympics has changed their medals to provide a more well-rounded sensory experience. And yet, it took 76 years for this change. One would think that an event specifically designed for people with disabilities would have realized their medals should be distinguishable by all their athletes. I do not aim to undermine this progressive action.  I seek to challenge that this should have been done sooner, and that the Olympics should likewise design their medals with the full range of ability in mind.

I hope society can embrace and cherish able-bodied and disabled athletes equally. Until that day comes, I will continue to support the incredible feats achieved by the athletes of the paraolympics.

#DisabledNotDefective

Sipping my morning coffee and perusing Facebook, I came across this article on Why Has Japan’s Massacre Of Disabled Gone Unnoticed? For Answers, Look To The Past.  Beyond my obvious outrage at the continual silence and ignorance surrounding the oppression of people with disabilities, reading this excerpt below jolted me into creating this blog. I often describe to friends, family, and colleagues my frustration with the social climate surrounding disability. I regularly rant about coverage in the news and on social media, and the misconceptions, miscommunications, and harassment I encounter regularly. As someone who has transitioned from being able-bodied to disabled, I am attuned to the concurrent transition in others' treatment and perceptions. I want to take the opportunity to use my voice, despite the discomfort in such vulnerability, to share my story and perspective of the often silenced and undervalued experience of disability.

From the above article:

“The fact is, most of us will move in and out of disability in our lifetimes, whether we do so through illness, an injury or merely the process of aging.”

Yet, fear of our own vulnerability and of the stigma that accompanies disability leads us to deny this basic truth. It is easier to see the disabled as a faceless population than as individuals who deserve respect, accommodation and opportunities to thrive.

The obvious irony resonates with me; all of us encounter disability at some point in our lives, and yet we are socialized to shame.  Our culture is thankfully beginning to acknowledge the oppression of many marginalized groups (#blacklivesmatter #everydaysexism #yesallwomen), however, disability is often neglected from this conversation. There are few movements of pride within the disabled community. I attribute this to an inherent challenge in establishing empowerment for disability. Even the word "disability" signals differences in capability. By extension, disability creates a hierarchy that so easily translates into individual worth. This shame leads us to hide our disabilities, or hide the people with them.

 Again from this article, describing the response to Japan's mass murder of people with disabilities:  

“There was no hashtag. No public outcry. Not even prayers.”

 I am only  one person, but I offer a hashtag. I cry out. I pray.