restricted access A Note on Being Ability–different, Atypically–bodied . . . Criptastic?
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A Note on Being Ability–different, Atypically–bodied . . . Criptastic?

In being prompted to write about my experiences with disability [alternatively written: (dis)ability, dis/ability, “disability,” disAbility], I am confronted with more questions than I have answers. Am I to reflect on that small window of time, one so small that I don’t actually remember it, when I did not know that I was different? My mom [End Page 196] has recounted vivid moments where I seem to come to this realization—for example, at the age of three, when I see my twin sister and friends scrambling on a playground and I process that I am unable to join them. Realization of my differentness (my different body, my different way of moving, my different abilities) continued into my youth and adulthood (Can’t skate—check. Can’t ride a two–wheeled bike—check. Usually walk behind others, destined to be the last in a group—check. Was the smart kid in class, aka smartass–in–training—check).

Eventually, I realized that my differentness was not contained to my body or my abilities. Were my mind, my self, and my relationships different as well? I seemed to empathize when others didn’t or couldn’t. I saw that certain things were just wrong, and was confused when others didn’t share my concern. I seemed to see, feel, and experience things that others did not. For instance, I had two invasive operations before the age of eleven, a handful of minor procedures and countless physiotherapy sessions. Some memories of these times are horrific. Some I cherish, including the genuine care of the health care staff. Some are hilarious, like being doped–up before invasive surgery at the age of ten and calling my favorite surgeon “So cute!!” But always, there was physical pain, pain, pain. At times, I was completely dependent on others to help me to the bathroom, the shower, to move around, and to recover. I received such tender and exquisite care from my mom during these times. The dependency, which I had no choice but to experience, the dependency that is feared by almost everyone I know (“If I am ever a burden to my family, shoot me”) is something that my mom and I constantly joke about (“Em, I will take care of you now, only if you change my diapers when I’m old, kay?”). I have come to learn that this dependency, along with those other shades of vulnerability, are an inevitable consequence of being human, and to deny this is to relinquish our capacity to connect with others.

I had, and continue to have, relationships with strangers, friends and family, which are, in my best estimation, atypical. I am the recipient of staring, laughing, pointing, sympathy, disgust, empathy, tender care, curiosity, hostility, resentment, and ambivalence. While in the gym, complete strangers approach me to say, with all the kindness, enthusiasm, and obliviousness in the world: “Glad to see you out and about. Good for you!” For some, I am to be protected; for others, I am to be tiptoed around; and for others, I am to be congratulated for “overcoming my circumstance” and for being oh–so–valuable to society because of my smarts and productivity.

It is a rare few who accept what Cerebral Palsy and epilepsy offer to my life and to their own, with all of their accompanying complexities, possibilities, and contradictions.

It is ironic that the excellent health care and services I have received, which have probably changed my life for the better, are only made possible because of the “disability” label, which I have come to heartily dislike. I have always felt ill–at–ease with this word and concept. In my mind, it just does not describe me or others around me. Perhaps more accurately, the definitions and associations that stubbornly accompany the term (e.g., the disabled person as asexual, passive and in need of protection, the disabled person as the conquering hero) would never accurately describe me. Undoubtedly, the term is negative in its connotations. And, of course, the concept of disability relies on certain notions of “normal.” By most accounts in...