Kabuki Syndrome
My younger brother was born with Kabuki Syndrome, a disability frequently compared to Down Syndrome and autism that impairs his speech, fine motor, and behavior. This, of course, can be interpreted as detriments to his quality of life; he has a hard time with social situations and making friends, he won't ever be able to properly play sports or drive a car, and he struggles with basic tasks like communicating with others and writing neatly with a pencil. He's never passed an annual standardized state exam (although he has come close on numerous occasions), and despite being an avid sports fan at 16 years old, he still can't cleanly catch a ball.
Bauman and Murray ask in Deaf Studies in the 21st Century, "How does being deaf reorganize what it means to be human? [...] Embracing deaf people and their languages lead toward a deeper understanding of the human proclivity for adaptation. [...] In this light, deafness is not so much defined by a fundamental lack, as in hearing loss, but as its opposite, as a means to understand the plenitude of human being, as Deaf-gain." This is all too valid for other disabilities, such as my brother's Kabuki Syndrome. How does having Kabuki Syndrome reorganize what it means to be human? How has he adapted in light of this, and how can we redefine his disability in terms of what it has given him, as opposed to what it has taken away?
While he certainly does struggle with social situations and emotional contexts, we may reobserve this from a new perspective. His difficulty with "reading" other people and acting appropriately in social environments doesn't faze him - while he may struggle with this from our perspective, he doesn't realize that this is the case. He's not aware that he may be misreading social situations, and therefore does not feel frustrated by it. In fact, he's perfectly comfortable in all social contexts, both formal and informal, personal and impersonal. He doesn't (outwardly) exhibit signs of anxiety or confusion when faced with unfamiliar people and environments; instead, he remains his usual, bubbly self. Despite having been mocked and insulted as a child due to his disability, he's never taken it to heart. He doesn't believe in his heart there's anything that sets him apart from the general population other than us telling him that he's got Kabuki Syndrome. In a way, his limited awareness empowers him; he's not held back by societal norms or expectations, as in his mind, they don't exist. He has an infectious optimism, regardless of his surroundings. To that end, perhaps we can also reorganize what it means to be human - the relentless pursuit of happiness?
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