Neurodiversity

The Path That Chose Me

These past few days, I’ve been realizing that, from the time I was small, I’ve lived with an odd kind of bifurcated consciousness about myself. On the one hand, I was The Child Destined to Do Great Things. On the other hand, I have always been on the margins.

As a child, I was gifted at music and intellectually precocious. I was told that I could succeed at anything I wanted to do. The sky was the limit! I was going to grow up to Be Somebody! And when I say Be Somebody, I mean in a completely and utterly conventional sense. Doors were going to open. I was going to be welcomed into a prestigious position in which I would Do Important Things. In other words, I was going to be in the center of the known world.

On the other hand, I have always felt myself to be on the margins. I don’t mean on the socio-economic margins, although that has sometimes been the case. I mean on the karmic margins — which is to say, on the margins in nearly every situation I have ever entered. Even in my original family, in which I was The Child Destined to Do Great Things, in which people kvelled over me as though it were their life’s work, I was on the margins. I just didn’t fit. Even when I was standing next to them, I watched my family members over there, as though they were in the center of the room, relating to one another, and I was on the outside. For a long time, I was sure that I must have been adopted, because there was no one in the family who reminded me of myself at all.

I felt myself on the margins in high school, and I felt myself on the margins at work, and the feeling rarely left me, even when I was trying so hard to be in the center of it all. Especially when I was trying so hard to be in the center of it all. The only time I didn’t feel on the margins was when I happened to cross paths for awhile with other people on the margins. Then the world felt like home.

Recently, I’ve been finding myself in a state of Great Regret over some decisions I made in my early life. More specifically, it’s that self who was Destined to Do Great Things that is the source of this Great Regret. I’ve been kicking myself over my decision to leave Princeton after my sophomore year, and my decision to leave Berkeley without my PhD. I keep thinking to myself: How hard would it have been to stick it out at Princeton for two more years? I’d have a Princeton diploma! Think of the prestige! And I could have finished that PhD program, even though I didn’t want to become an academic. I’d have a PhD! More prestige! What the hell was I thinking? How could I have been so short-sighted?

All that comes from one version of myself. What’s kicking it all up right now is the other version of myself, the one who knows that I’m on the margins. Here I am, doing my work on autism and empathy on behalf of my dear and beloved autistic people, and wishing like hell that I had some kind of prestige to go with all my critical thought, because it would help the cause. Having spent a lot of time in academia, I’m painfully aware of the pecking order, and I’m keenly aware of where my master’s degree in English puts me.

Was I glad to have the experience of studying for my first master’s degree? Yes. Am I glad to have the experience of studying for my second master’s degree? Yes. But this time around, I am not doing it for the sake of “moving up” in the world, but for the sake of the work I want to bring to the world.

Of course, nothing would ever be enough to get me to a place of privilege in the world as presently constituted. Not as a disabled person. Not as an autistic person. Unless I help to work against hierarchies of power and privilege in the world, I will always be Other. Unless I help the world to move beyond a deficit-driven model of human beings, I will never be Enough — not if I have six PhDs and six fancy titles to go with them. For me, that’s the struggle of being disabled — not the condition itself, but the knowledge that in the eyes of the conventional world, I am less-than, whatever my intelligence and whatever my accomplishments.

In some way, I have always known all of these things, even before I ever imagined that the word “disabled” would adhere to me. I have always felt it. Perhaps it’s that I was never normal. I was always different. I was not different because of what I wore or what I said, though sometimes, those were the expressions of my difference. I could always change what I wore or what I said, although sometimes at great personal cost. But my difference went beyond that. I was different to my core, in a completely unchangeable way, in a society in which deviation from the norm is considered shameful and must be corrected at all costs. For all my passing, I’ve always known that something in the core of me was not acceptable in the eyes of the world, and that it would never change.

And now I know that it’s called being disabled.

All my life, I’ve been standing at the same crossroads, over and over. Do I chase that dream of being in the center? Or do I throw in my lot with other marginalized people? I’ve tried chasing the dream, over and over, and I always end up leaving it behind: I left Princeton, I left Berkeley, I left my high-paying job to homeschool my daughter. But I never acknowledge the other path, because the idea of stepping over to the path that leads to the margins has always felt too frightening to me. There is so much vulnerability there, so much potential for pain, and injustice, and derision, and disrespect, and mistreatment. I crave that acceptance, that conventional mark of approval, that illusion of safety that comes from wanting to Be Somebody, and I’ve resisted all my life the idea that to Be Somebody, in the way that the world understands it, may not be why I was put on this earth.

Lately, I’ve realized that I can’t keep circling around to the same crossroads, over and over. I have to choose the path that leads to the margins because, in truth, it has already chosen me, and it’s exhausting to continue to flee it. I have to throw in my lot with other marginalized people. I cannot continue to give power to the idea that one’s ability to be heard, and respected, and understood should depend upon a diploma, or the trappings of normalcy, or the acceptance of convention — not when most marginalized people will never have a diploma, will never pass for normal, will never live conventional lives, will never be granted prestige or the trappings of power, but will always have to fight just to be heard, just to eat, just to live in a safe place.

Many of us can pass well enough to have all those things, but as Rosemarie Garland-Thomson writes, passing for normal with an invisible disability is a “seductive but psychically estranging access to privilege” that has serious personal and social implications:

“Some of my friends, for example, have measured their regard for me by saying, ‘But I don’t think of you as disabled.’ What they point to in such a compliment is the contradiction they find between their perception of me as a valuable, capable, lovable person and the cultural figure of the disabled person whom they take to be precisely my opposite: worthless, incapable, and unlovable… The trouble with such statements is that they leave intact, without challenge, the oppressive stereotypes that permit, among other things, the unexamined use of disability terms such as crippled, lame, dumb, idiot, moron as verbal gestures of derision.

…

[B]y disavowing disability identity, many of us learned to save ourselves from devaluation by a complicity that perpetuates oppressive notions about ostensibly real disabled people. Thus, together we help make the alternately menacing and pathetic cultural figures who rattle tin cups or rave on street corners ones we with impairments often flee from more surely than those who imagine themselves as nondisabled.” (22)

All my life, the man rattling the tin cup has been one of my people. I’ve known it. I’ve fled from that knowledge, and I’ve fled from that man, but I’ve known it. The suffering of others is a tear in the fabric of the universe, and I am part of that fabric, and I’ve known it for a long, long time. I’ve known it since the day I sat in the synagogue at the age of ten, and watched a film of real Nazis shooting real women and children at the edge of a ditch, and had a stark realization: Those women and children, standing on the margin of that pit, getting ready to feel the bullets tearing through their bodies, were not people to pity and to forget. I was one of them. I was on the edge of that ditch with them — terrified and grief-stricken, but one of them.

I have always known who my people are, and I’ve fled from them, afraid that if I threw in my lot with them, I’d have to give up this mad craving for acceptance, for approval, for the mythic safety of “normalcy,” for the dream of what people once led me to believe was my destiny. And that fear has cost me dearly — physically, mentally, ethically, and spiritually. I’m only beginning to understand just how dearly.

It’s an awful thing to be at war with oneself. It’s an awful thing to keep fleeing and arriving at the same place, over and over. I can’t do it anymore. I won’t do it anymore.

There is no shame in being on the margins. There is only shame in believing that I am too important to be there.

There is no shame in being told that I am broken, that I am lacking, that I will never be enough. There is only shame in believing it.

There is no shame in being ridiculed, or patronized, or dismissed. There is only shame in being the one who ridicules, or patronizes, or dismisses.

There is no shame in being misunderstood. There is only shame in refusing to understand.

There is no shame in being an ordinary person speaking truth to power. There is only shame in keeping silent and forgetting that ordinary people are the ones who heal this world.

No matter what happens to me in this life, I will always find my people. All I have to do is to reach out my hand.

Sources

Garland-Thomson, Rosemarie. “Integrating Disability, Transforming Feminist Theory.” Feminist Formations 14, no. 3 (Fall 2002): 1-32. http://mtw160-150.ippl.jhu.edu/login?uri=/journals/nwsa_journal/v014/14.3garland-thomson.pdf.

© 2011 by Rachel Cohen-Rottenberg

Rachel Cohen-Rottenberg blogs at Journeys with Autism, and presides at Autism and Empathy.

The Path That Chose Me appears here by permission.

The most recent installment in Rachel Cohen-Rottenberg’s published memoirs is Blazing My Trail.

[image via Flickr/Creative Commons]

Rachel Cohen-Rottenberg on 12/23/11 in Evolution, featured | 3 Comments | Read More