Life Worthy of Life

| January 22, 2016 | 1 Comment

I’ve been feeling anxious lately, overwhelmed by things that, in theory, shouldn’t be too difficult. I’ve been constantly exhausted, falling back into dark, reflexive thought patterns I don’t want to be governed by anymore. I’ve been struggling to explain what’s going on, struggling to determine whether anything is going on. I’m not self-destructive these days; I’m pretty stable, pretty happy overall. But it hasn’t always been that way, and sometimes it can still be hard to manage my mental health.

Sometimes, I can be difficult to live with. Sometimes, my body feels foreign to me. Sometimes I cope in ways that don’t make sense. I go for long runs and relish the feeling of blisters forming on the soles of my feet. The input, painful as it is, is grounding. Other times I fidget, bounce my legs, snap my fingers over and over, dig my thumbnails into my arms because that makes me feel like I can locate myself, like I’m not just spinning out and losing control. I know how to hide these things. I know when to excuse myself to the bathroom, to conceal my nervous hands under the table. I know how to come across—when I need to, at least—as a competent, put-together young adult. And in a lot of ways I am; I’m a good student, I hold several leadership roles on campus, I somehow always manage to get everything done more or less on time.

Photo credit: Ivo Dimitrov via Flickr (license) [image description: sixteen silhouettes of heads containing various colors and patterns on a green background]

Photo credit: Ivo Dimitrov via Flickr (license)
[image description: sixteen silhouettes of heads containing various colors and patterns on a green background]

But, as someone who works with individuals with disabilities, I struggle to try to make sense of my own experience as it relates to what the people I’m working with are going through. Mental health issues aren’t synonymous to intellectual and developmental disabilities, of course, but I can’t help but notice some patterns in how these different kinds of neruo-atypicality are addressed. People typically presume my competence (maybe because I’m able to hide my differences), but plenty of other people are underestimated and denied agency and opportunity based on false conclusions about appearance and behavior and capability.

I try to think about what would happen to me if I were a child with, say, an autism diagnosis and I was displaying the same behaviors I’ve mentioned. People would hold my hands down. I would become even more scared, even more frustrated with myself. I would probably lash out, at a certain point, or else shut down entirely. I wonder what my life would be like if I was not the kind of person who is given the benefit of the doubt, if I did not have the autonomy to deal with things in ways that feel necessary in the moment, to remove myself from the situation, to act in ways that sometimes seem odd without being pathologized. It hurts to imagine it. It makes me even more anxious. I feel like I can’t admit to any of this.

Any admission of difficulty feels like a personal failure; it is okay to need support, I think to myself, but not when your own inadequacies are going to affect children. I am afraid that letting people know that I’m struggling will cause them to question my ability to do my job down the road, that every time I make such an admission, others will extrapolate. And sometimes, I’m afraid that they won’t be wrong; maybe what I’m really doing is projecting my own extrapolation onto them. Regardless, I feel like everything I do reflects not just on who I am as a person or a student, but on who I’ll be as a teacher, and that image is essential to maintain. The risks involved in acknowledging my own difficulties seem daunting.

At the same time, I feel like a fraud, preaching self-advocacy without practicing it. How many times have I sat in a classroom and related more to the students—frustrated by repetitive drilling and patronizing voices, struggling to communicate, self-regulating in ways that don’t look right or make sense to others—than to the staff? Do I owe it to my future kids to explore my own potential neurodivergence, to openly empathize with them, to use my own experiences combined with my position of privilege as a future professional to challenge what others in the field might be saying? By teaching myself how to advocate for and meet my own needs, can I stumble on strategies that will help my students? Am I brave enough for that? Am I confident enough in my own competence, the validity of my own experience?

Photo credit: Beao via Wikimedia Commons (Public Domain) [image description] A black line drawing of a tree with a banner over it reading “Eugenics.” To the left of the trunk is written “Eugenics is the self direction” and on the right is “of human evolution.” The roots of the tree are labeled with words like “genetics,” “psychology,” “anthropology,” and “genealogy.”]

Photo credit: Beao via Wikimedia Commons (Public Domain)
[image description] A black line drawing of a tree with a banner over it reading “Eugenics.” To the left of the trunk is written “Eugenics is the self direction” and on the right is “of human evolution.” The roots of the tree are labeled with words like “genetics,” “psychology,” “anthropology,” and “genealogy.”]

I recently read this great book by Steve Silberman called NeuroTribes, which is basically a history of autism that somehow manages to be a page-turner (In case you can’t tell, I cannot recommended it highly enough.) One of the most difficult sections of the book is an early chapter in which Silberman addresses the American eugenics movement in the early 1900s. It’s—to put it mildly—hard to stomach. As I was reading it, I found myself thinking about every kid or adult I’ve worked with—what they would have been called, how they would have been treated.

And not just them. Silberman gives a whole list of conditions that were singled out as undesirable: insanity, criminality, perversion, dementia, melancholia, alcoholism, stuttering, lisping, vertigo, migraine, bedwetting, sleepwalking, wanderlust, and other forms of degeneracy. I think of how many people in my family, how many of the other people I care about fall into one or more of those categories—myself included. What would have happened to me if I’d been born (provided that I had been born, that my mentally ill family members hadn’t been sterilized) in the early twentieth century? I am going into a field in which I will be, as a professional, in a position of institutional power over people with disabilities (the degenerate, the feebleminded, life unworthy of life…my skin crawls when I think about these godawful terms), but had we all lived 100 years ago, for all I know, I might have been the patient strapped to the next bed.

It’s a testament to the fact that the lines we draw between ourselves and others aren’t so fixed as we think, that our conceptions about mental health and disability and autonomy and potential are not nearly so absolute as they seem. It makes me grateful that I live in a context in which I’m considered deserving of a future, but it makes me hurt for the thousands of other people who are still wrongly seen as having nothing to give. It makes me deeply sad, but it also gives me a glimmer of hope to think that I am making my way despite internal challenges and external barriers, that maybe—just maybe—I can use this privilege to help others do the same.

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Category: Reflections, Social Activism

Emily Hurd

About the Author ()

Emily is a special education major from a tiny town in southern Pennsylvania. She's a firm believer in the virtues of art-making, rambling discussion, and consuming excessive amounts of both coffee and tea. Her other interests include reading and writing poetry, poking around in abandoned houses, and procrastinating indefinitely. Her proudest moment involved replacing the word "oil" on construction signs with "fish" so that the signs in question read "fresh fish and chips."

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  1. Nancy Rehm says:

    This is so beautifully stated and so true. What an important realization, not only for someone choosing to go into special education, but for all of us. Maintaining this kind of attitude of humility, no matter what we do or whom we work with, is what makes us human. We are all damaged in some way, and the best we can do is to help each other with grace and compassion.

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