The Things I Worry About
When my community back home asks me about my experience in school, I’m generally not sure how to respond. There are the things I know I want to tell them about: the neurobiology professors I could listen to for hours, who are remarkable in their skill as teachers and generous with their time and knowledge. The way sensation works through our body, in our skin. I want to regale them with the plethora of new facts I learn daily, the thousand miracles and tragedies of the human body and spirit that I find inspiring, crushing, challenging, and above all, fascinating.
And then there are the things I need to tell, for my own mental health: how the dean of my program refers to ‘North American’ culture as if that phrase makes any sense at all. How a lecture on ‘cultural competency’ by that same dean made me want to head straight for the airport and home, or, alternately, for a stiff drink, because I heard the most depressing excuses for institutionalized racism** coming out of the mouths of my blond, cheerful classmates , and how I momentarily felt a deep rage at their blitheness. How there are people in my class who find my distrust of the police offensive, and how I am tired of being labeled as contrary by my classmates. Other things, too: how for the first time I understand the stories my farm worker grandfather told about being the only brown-skinned Spanish speaking person in his Microbiology program. How I remember him mentioning to me that his closest friend from that era, an African American colleague, committed suicide, and how he stopped expecting to make friends in science after that. How I’m processing that that man who made me hotcakes in the morning told me all those stories not to bore me, or tell me how good I had it, but so I would know, years later, that he had my back.
I know I can tell them all of these things, and they will understand. A lot of the members of my community are mixes, like me. Homogeneous in any way we are not. We talk a lot about race and racism, and the system that keeps it in place.
When I tell them about my studies, they’ll be excited for me, and interested in much of what I’m learning. When I tell them what I need to tell them, my friends and family will mirror back at me the importance of resistance, the good fight. They’ll remind me that my classmates have been taught to assume their superiority, their value, but that, slowly, and through making a hell of a lot of noise and ruckus, things will change. They’ll remind me of my privilege, and they’ll tell me to keep being noisy
But. Here are the things I can’t talk to them about, and these are the things that scare me.
I can’t talk to them about feeling like, much as I would see a white person attempting to take over a black lives matter march as rife with paternalism and white saviorism, I sometimes think that my new chosen profession is maybe a version of that. Rehab professionals are a bunch of largely neurotypical and able bodied people telling people with disabilities how to better themselves. But I will not tell my friends and family that I see that, but because I will have school loans and also because I do want to start a career, I think I might be able to do some good anyway, and isn’t that the kind of excuses that those who hold up the status quo always make?
I also know that most of my friends actively fall into the inspiration porn*** trap, and to have that discussion would also mean having heavily difficult conversations about why that’s a problem.
I also can’t tell them, really, about aphasia. Or about Parkinsonian tremors. Or about spinal cord injury. I can’t talk about the amazing adaptive equipment I learn about, or the challenges of living with colostomy bag. Even mentioning the lack of disaster planning (or active shooter planning) for people with disabilities is treated with silence, and I can hear the lurking discomfort. The idea of brain or body damage, the idea of losing fluent, quick speech and bodies scares the bejesus out of most of my friends. The idea of having a child whose abilities are different is likewise uncomfortable. There is a member of our community who suffered traumatic brain injury some years ago, and I notice how very few of my beloveds take the time to sit with him, after a brief, compulsory hello, to connect to him with more than a quick hug, though once they spent hours in his company. In their eyes I see judgement and fear, and I don’t know how to talk to them about it. My community at home, so adept at talking about racism, and decent at talking about issues that arise with the intersectionality or racism and sexism and classism, constantly excuses and props up ableism.
Here is what has occurred to me. The reason that my friends think this way is many faceted. First of all, there’s the exceptionalism trap. To be successful as a person of color, you have to be ‘better’ than white people — and what does better mean, often, if not more productive, better at this game of capitalism? The stories I am telling are not about the kid with autism who is a math genius or the person with schizophrenia who is also artistically gifted. My case stories focus on people like me — average — but who, unlike me, also happen to be living with a disability. Disabilities are expensive. Just as the systems of the United States favor white people, they more specifically favor white able bodied people. Disability, then, can also seem to make more distant the dream of beating the capitalist system at its own dream.
This quarter, I took an optional class on Critical Race Theory in Medicine. Perhaps one element of critical race theory that I found most fascinating was interest convergence — the idea that white power structures do the right thing not out of a sense of moral outrage or principle, but because the right thing converges with their own interests in money or power or both. Essentially, when doing the ‘right’ thing coincides with something those in power want.
So, here, let me come clean. As I am writing this essay, I am necessarily the one in power while you read this. And I am not writing and thinking about this because I have a better idea of the worth of a human being than other people do, or because I am above seeing other people (any myself) as a commodity. I absolutely do not. I know I do not fully understand the ways in which I hold power and privilege: my light olive skin, for instance, and the safety it daily affords me.
So at the very least I owe my readers honesty. I am bringing this up because I am scared. I am scared that, in the white world of Occupational Therapy (because it is white and it does not want to change) I will never be able to talk about the damage to health caused by racism, both indirectly and purposefully. I am worried that, because I am light skinned, I will eventually simply get tired and instead erase my multicultural elements and melt into the blond, cheerful world of OT. And I am worried that in my largely able bodied, neurotypical, racially diverse community, I will never be able to talk about my job, because my friends find it too uncomfortable. I am worried that, by choosing the road I have chosen as a career, I will be lonely everywhere I go.
*was there ever a worse phrase?
** ’every culture is racist, right?’ — a word on this phrase. Yes, every person/group of people have biases. That doesn’t mean that somehow this excuses the institutional racism of the United States, and especially not when you are using this phrase to name your own privilege as natural and therefore not worth examining.
***Stella Young. Look her up.
cover image from:
https://lithub.com/the-intersectionality-wars-does-the-term-even-mean-anything-anymore/
