On Disability Identity and Sacrifice

by Pablo Baeza

Thunder makes me really uncomfortable. When I first accepted an invitation to ride a bicycle for over 1,000 miles, from New Orleans to Dallas, I was aware of the fact, but had somewhere between childhood and adolescence forgotten its significance.

Shortly before leaving New Orleans, the founder of the organization sponsoring our environmental justice bike ride repeated one phrase over and over as a central thesis for the work we would be doing: “what will you sacrifice?” 90+ miles in two days, 25 of them in thunder and rain, has taught me that my personal answer, my personal darkness, is the privilege of disembodied.

I’ve tried everything: yoga, sex, meditation. I depend on a mental life narrative for survival. I often resent this about myself. As those of you who have known me for a while are aware, I was assigned a litany of disability labels as a child. My fine motor skills are poor. My handwriting is awful, due to a fine motor disability known as dysgraphia. I was hypersensitive to sensory stimuli, diagnosed with Sensory Integration Dysfunction, suffering from selective attention, eating disorders and former history of picky eating, phobic of loud noises. Medicated for years in elementary school due to attentional issues, exacerbating these problems. Fighting expectation, always, reactionary, redefining my narrative for the sake of progress and possibility, always.

Look at me now. I, traveler, used to my car-and-bus bubble, air conditioning, windows to quell external stimuli, headphones on – destroying that picture, on a quest to discover where the oil that makes all of it possible comes from, where it’s produced, at what cost. Look at me, uncoordinated, sensitive to light and noise, riding through a Cajun Louisiana thunderstorm on bumpy country roads. In these moments, I am aware of the need to self-disclose (am I uncomfortable? how uncomfortable should I be?) but even more so of the politics of sacrifice. I am on the edge of my comfort zone. I know now, more than ever, as I successfully navigate the cracking windy roads with fear in my heart, hoping my body won’t give in to the discomfort of sweat in my eye, thunder in the distance, that semantics are everything, and that relinquishing them is the fight of the privileged. If I hadn’t been taught to conceive of my body as dysgraphic, dysfunctional, uncoordinated, abnormal, if I hadn’t been raised in a society that values the smartest and most powerful in a way that deliberately forces people not to think about their bodies, maybe I wouldn’t have the preconceived notion that my body isn’t good enough to do what it is I am doing, that I should be fearful because my bodily limits are X or Y. So what I’m sacrificing this summer is the privilege of thinking that way, because the communities we’re traveling through this summer, dying of cancer, asthma, drug-related crime, don’t have that choice and will likely never be able to receive the disempowering disability identity labels that have formed the politics of my merit as a human being for so long. For so long, I have been taught to fear limits – and limits are dangerous, not because they kill, but because tension, and with it, radical possibility, exists primarily at the limits, at the edge of the horizon we have been taught for so long, in complacency and in privilege, not to question, especially in communities like the ones I did most of my schooling, places that have harnessed that fear in the name of greed and political power.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s