Wednesday, January 11, 2017

Explaining Academic Theory with Characters: The Tropes of Disability

Theories in disability studies posit several approaches to disability (brief and informative definitions of models including medical, moral, and social models can be found here). Emily K. Michael, a fellow blind academic, developed these ideas into three specific characters in her fantastic TEDX talk.

I was struck by the humanity Emily introduces by defining these academic theories using characters. Before explaining further, I offer a summary of Emily’s tropes, with some expansion of my own. The three tropes Emily identifies are the victim, the superhero, and the unspeakable. The victim believes disability will forever ruin their life, changing their life for the worse. “It is so unfair; every aspect of life is harder – and often impossible - because of my disability.” The victim is the persona generally expected from the able-bodied, because without experiencing disability, the able-bodied often imagine disability to be excruciating. On the other extreme, the superhero believes they are not a victim, does not want pity, and thinks they can tackle anything. “It’s not hard at all, I have all the accommodations I could ever need and can navigate the world just as anyone else can.” The superhero desperately wants others to believe they can accomplish everything they want to perfectly and seamlessly, evading the vulnerability of admitting what they can and cannot do.   The unspeakable denies the role of disability, trying to hide the experience. The unspeakable does not share stories about their disability, accommodations they use, or ask for help. Often the unspeakable confabulates, blaming their social faux pas or symptoms on something else entirely.   

I felt a strong connection to these tropes because I am these tropes. I embody each of these personas at different times.

The Victim: At age 18, my vision loss made it no longer safe to drive. I vividly recall when I realized I would soon have to relinquish my car, my chariot to teenage freedom. I had spent 12 hours at a debate competition, arguing the pros and cons of harsher punishments for hate crimes. My eyes were exhausted; bleary from squinting at scribbles under florescent lighting. When I walked outside, I waited for my eyes to adjust to the darkness and for my vision to focus. I waited, but my eyes did not adjust, my vision did not refocus. I felt a rush of panic; I couldn’t possibly drive. My eyes darted between my teammates. I pulled one aside and whispered, “Hey, do you mind driving? My eyes are really tired and I don’t think it’s safe.” He obliged. I spent the car ride scanning the environment, noticing what I could and could not see. Should I be able to read that sign? Do those lights look haloed to everyone? My body sank into the seat, feeling heavy with the weight of my dependence on others. Over the following few weeks, my vision loss progressed, I handed over my keys. I coordinated every social gathering, errand, and appointment with a pool of drivers, my dear supportive family and friends. At the time, I felt that my autonomy was being unfairly stripped away. I believed everything would be harder being unable to drive. I pitied myself, and thought the world was unfair.

The Superhero: At my first job after college, I yearned to convince my employers that I could do anything any sighted person could do. One of my first tasks was to set up a database and enter patient data. To my colleagues, the challenging aspect of this task was configuring the extensive database, comprised of hundreds of tables with thousands of fields. Although it was indeed cumbersome to learn to use unfamiliar software, I found it rewarding to develop new database management skills. To me, the challenging, and miserable, aspect of this task was squinting and magnifying each individual response to enter into data tables. Standard-print paper data entry is not a good task for a visually impaired person. My eyes fatigued often, giving me headaches. I needed to take frequent breaks.  I could only perform the task in certain spaces with appropriate lighting. But no one around me knew any of that, because I wanted them to see me as diligent, conscientious, and capable. I never complained, no matter if a task took me longer, gave me headaches, or was not done as well due to my vision loss. I developed a pattern of accommodating myself, ensuring my colleagues never saw me struggle. I denied any potential for my vision loss to impact my work or me.

The Unspeakable: For the first few years of my relationship with my boyfriend, I intentionally failed to mention anything about my vision to his parents. It was pretty easy to hide. We often went out to eat at Chinese restaurants where his family orders (in Mandarin) several dishes to share family style, so I never needed to magnify a menu. Because most foods weren’t easily identifiable, someone would describe the contents of each dish, so I didn’t need to see for myself, or ask for clarification. I struggled to serve myself from the platters, but I easily blamed chopstick clumsiness, which signaled my boyfriend to help. I preferred to silence that part of me to avoid undesirable reactions. On some level, I assumed my boyfriend informed them about my vision loss and perhaps disclosed the effects it has on our relationship. And yet, I never brought it up. I was always afraid that they would see me as broken or resent the ways in which I require assistance from their son.

I hypothesize most people with disabilities, like me, see themselves as the victim, the superhero, and the unspeakable. Through my work as a therapist, I’ve been trying to internalize the eternal ampersand (stick with me here, this sentence will make sense soon, I hope). My clinical work is informed by a treatment modality called Dialectical Behavioral Therapy (DBT). In DBT, we emphasize dialectics, or contradictions, like acceptance and change. In these dialectics, we acknowledge the competing poles of accepting ourselves fully and nonjudgmentally, and seeking to change and improve. The idea of dialectics is that, although seemingly opposing, both poles are true. We can both accept ourselves as enough and strive to improve to be better. There are many core dialectics in DBT, and this framework can be applied to various conflicting poles. “The eternal ampersand” represents my desire to notice the “ands.”

In this case, through these tropes, I recognize the eternal ampersand of my disabled identity. Most of the time, I'm just me, a person with low vision, sharing my experience and acknowledging what I can and cannot do. And some of the time, I embody the victim, superhero, and unspeakable. These tropes, functioning as personifications of academic theories, depict the dynamic ways we represent ourselves and our abilities.

No comments:

Post a Comment