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
“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.”
Yes! I’ve always lived on the fringe. I’ve always identified with others on the fringe, even if I only acknowledged it on the inside. These are my people too…
Great to meet another fellow traveler, ictus75.
We are all on the Spectrum Road…
This is so spookily resonant with so many things I’m thinking about this week…including my horoscope which was about asking myself to figure out whatever the thing is that I don’t *want* to know. And the book I’ve decided I want to write about how performing artists and autistic people have been historically marginalized in similar ways for similar reasons. And that things are really hard financially but I’m so smart and well-educated and it wasn’t supposed to be like this and so having to give myself the talk again and again that the kind of life everyone presumed I’d have was actually not my life at all….
There’s a song I listen to on repeat sometimes when I’m in this mood, by Yusuf (the artist formerly known as Cat Stevens), that has a line that goes “And though you’ve traveled many roads/ There is but one way, and that’s the one you chose.”
chavisory, I think that waking up from the dream of who other people said we’d be is one of the most difficult things in life.
I’m gonna quote you on that.
“Connect. Only Connect.” Absolutely beautiful, Rachel. We’re here for you.
Thank you, Brenda. I am here for you, too.
I am overwhelmed by the truth of your post. I have been split myself. The “gifted” self often wonders what happened to her so called “promising” life.
A wave of acceptance has passed over me as I learn about myself, but some parts of my life are difficult to let go of.
Thank you for your post.
Hi Lori,
Yes, that “promising” life that somehow didn’t materialize is one of the hardest things to reconcile. I’ve come to understand that “promising” is a word that basically ignores context. Yes, my life is, was, and always will be “promising,” but unfortunately, I live in a society that put a tremendous number of obstacles in the way of disabled people. And then, of course, I wonder who is making the promises here — me, or the adults who defined my promise in my childhood?
as though listening to an echo of my own inner voice… so close to my own experience I felt a prickle on the back of my neck.
Wow! So glad we’ve happened across each other, Selene.
Reminds me of the Frank Sinatra song, “I did it my way”
“For what is a man, what has he got?
If not himself, then he has naught.
To say the things he truly feels;
And not the words of one who kneels.
The record shows I took the blows -
And did it my way!”
http://www.lyricsfreak.com/f/frank+sinatra/my+way_20056378.html
Now there’s a blast from the past!
I occasionally sing this to myself when I’m feeling like a ninja.
It’s amazing to find the striking chords of honesty ring so true in your post. My life is an echo of many alternate paths which have always been based on how I perceived my otherness.
At this juncture in my life (almost 50 y/o) I find myself acutely reflective on these matters with an a humble awareness which guides me.
Immensely grateful and appreciative for every step and misstep I ever took, and lessons I’ve learned along the way. Perhaps we see all this reflected more easily in ourselves, because no matter where we are in our lives, as you said so beautifully, “I will always find my people.”
Sharon, my husband and I often talk about the fact that our lives, which can sometimes like just a random series of jumps and missteps, actually have a cohesive pattern, in which one choice has inevitably lead to another. I think that much of the challenge of mid-life is to re-weave that pattern and see it with new eyes.
Thank you for this, it’s wonderful to read such a clear call for acceptance. I’m going to reread this and share it I think. Again, thank you!
I’m so glad it spoke to you, Larry. Many thanks for letting me know!
A bit of the reconciliation and rethinking the self that goes on in middle age. We rethink our narratives to try and make sense.
However, the world is changing rapidly and all the credentials and positions that might have been may now be meaningless due to the larger economic and global shifts that our major institutions are facing. To what extent, would the degrees and credentials have meaning if the very positions are eliminated due to budget cuts? There are now tons of highly credentialed people on the unemployment lines. Unfortunately, an IVY League degree does not guarantee anything any more. There are a lot of Wharton MBAs and Ivy League lawyers and other highly credentialed folks on the streets these days. In previous times, these degrees might have meant something in terms of gaining a sinecure guaranteeing economic security; but today, they do not. The rules have changed.
So, if you had done ALL THAT, you might be unlucky enough to have rolled the dice and gotten nothing for it. You might have paid a very high price for those parchments and come away empty handed. Or, perhaps, you might have even fallen into an abyss of physical and psychological damage.
I am rethinking my career path as well and I am deciding to go my own way. I am not sure that it is going to be called a “career path” but it will be me. It will take some doing but, at this point in life, everything takes some doing. People trying to get jobs in this environment are throwing out thousands of resumes for a job that they will not be happy in. I am just going to do my own thing, whatever that may entail, which will probably be a nontraditional path. I don’t know what it is yet; but, whatever I end up doing, I will take into account my own unique limitations and strengths. I have a feeling that I will make out better following my own path as I will have the enthusiasm to “Make It Work” as opposed to a reliance on “Sheer Pig Headedness” to bull dog out a bad situation. No paths are easy these days.
So, if you had all those degrees, (and I, too am guilty of thinking the same thing!), I am not sure that we would not have ended up in the same place as the hero of “Paper Chase”, where he flings all the papers into the sky!
Yes it’s entirely possible that, if I’d gotten those degrees, I’d have ended up in bad shape — and in a place I wasn’t supposed to be. In fact, that was my instinct when I left both programs — that I was heading down a road that was not going to be healthy for me in the long run. I’ve never looked back or regretted it at all — until now — because so many good things have come from those decisions. I have to remember that if I’d followed those other paths, I wouldn’t have the people in my life that I have now — my husband, my daughter, my community.
Oh wow. How eloquently put!! And I’ve always been the same, always living on the edges. I got my diagnosis at 33. Although surprising, it was an explanation for all the stuff I had been doing and feeling throughout my life. I am currently in the same place as you are. Re-evaluating, beating myself up, pondering.
Jessy, we’ve got to stop beating ourselves up, for sure. The re-evaluating and pondering parts are good, though.
This is exactly what I needed to hear right now. I’m recently out of a long term relationship and trying to find my place in the world. I’m always struggled with the idea of being both disabled and highly intelligent, like perhaps that if I acknowledge/take ownership of my disability, I can’t be intelligent. I’m trying to work both in-that I can be both. It’s a constant re-evaluation especially as I grew up in a family that highly values intelligence/degrees/etc but not so much with being ok with disability.
Hi Rebecca,
Yes, it’s that cognitive dissonance we’re taught — that disability is somehow incongruent with achievement or intelligence — that can be very hard to work out of. And then there’s the pressure to “prove” ourselves by going above and beyond in ways that we might not do if we weren’t disabled.
There’s a wonderful, if apocryphal, story about St. Francis who, apparently, had a great dread of lepers. One night he had a dream in which G-d told him that the next day he would encounter a leper on the road, and he was to run up to him, hug and kiss him, and pick him up and carry him to the nearest town for healing.
Francis woke up in a panic, knowing that he simply had to do what G-d wanted him to do — even though, as you suggest, it was exactly the opposite of what he thought he wanted — or was supposed — to do.
When Francis told his companion of the dream, his companion said, “Well, maybe we should take a different road today…” to which Francis replied, “No — wherever we go today, the leper will be there.”
So they set off on their path and, sure enough, heard a leper’s bell. Francis took a deep breath and ran down the road, hugged and kissed the leper, picked him up and wrapped him in his cloak, and ran to the nearest town. When he got there and opened his cloak, nothing was there.
Afraid of associating with those folks on the margins? As Francis learned, what else can we do and still be ourselves!
Yup. Everywhere you go, you’re still on your path, whether you like it or not!
Another lens to look at things is through the lens of “Gifted and Talented”. I really hate the term gifted and talented because of the elitism it engenders but it is the words that are used. The definitions on the web speak of things like “Gifted individuals are those who demonstrate outstanding levels of aptitude (defined as an exceptional ability to reason and learn) or competence (documented performance or achievement in top 10% or rarer) in one or more domains”. But that is not all. It is a generalized neurological condition that I prefer to think of , like autism, as being on a spectrum with a heterogeneous collection of attributes, including outstanding talents in various domains (sometimes multiple domains), often sensory integration problems or “glitches” in executive function, highly sensitive nature, a drive to serve humanity, high levels of creativity, and high levels of commitment motivation. Like autism, most of the literature centers around children and forgets that these children grow up to be adults.
But many of the problems are those similar to the problems of the disabled in terms of marginalization and “fit into social norms”. In fact, many of the ways of dealing with the gifted are to adopt the frameworks for the disabled… labeling, special needs.
There are psychologists who now specialize in working with the gifted to help them negotiate their neurology with the greater society. And also, the 2e group, “doubly exceptional” — both disabled and gifted. I have been reading a book about gifted adults that describes when gifted traits need to be expressed in order to have a whole and healthy individual and when those very traits can cause problems with other people (justified or not). You can also argue the same expression of traits of the disabled need expression in order to be whole and healthy and when those very traits can cause conflict.
Marginalization exists on a plethora of levels. It seems that the human mind needs some sort of categorization to help us think about the world; but also that the categorization forms the basis of value judgement: If you are not X, you are inferior and worthy of marginalization.
I don’t think it’s in the nature of the human mind to do these things. I don’t believe it’s inevitable that human beings rank order one another and cast each other to the margins. It’s taught and learned. And since it’s taught and learned, it can be changed.
When did this blog turn into a mirror?
For me, there’s never been that choice. There’s a recurring moment, both literally and figuratively, for me where a group of people are in a circle, and I can try to find a spot to join them, but they never bother to adjust themselves to make room for me to become part of the circle. I’m left sitting just outside of the circle, always.
And that is the Autistic challenge: no matter how “gifted & talented” you are, the lack of social skills will keep you out of the circle. How many of us are examples of great promise unfulfilled, because we just can’t network or make those personal connections like NTs can? I’m a bit tired of being told how brilliant I am, but still not allowed into the circle…
“Networking.” Oh god, don’t use that word.
I hear you loud and clear, ictus75. For sure.
OUCH. This is my life. Exactly. How many times have I heard “you’re so smart, you can do anything – you’re the only one holding yourself back” Oh yeah, and this one “maybe you’re afraid of success”…
“networking” – cringe
If I ever make it thru a management meeting without a social blunder, I’ll mark that day on my calendar and celebrate it annually – LOL.
How many times have I heard “you’re so smart, you can do anything – you’re the only one holding yourself back” Oh yeah, and this one “maybe you’re afraid of success”…
OUCH back at you. Been there, done that over & over. If only Aspergers/Autism wasn’t such an inside job at times, because no one can see how I’m thinking or feeling. Though I may look “normal” on the outside, I’m a complete mess on the inside. I beat myself up enough, I don’t need others to join in on the frenzy…
Jayn, this blog has always been a mirror. You just hadn’t noticed before.
The part of this where you discuss things you should have done academic-wise sounds really familiar right now. I am writing my senior thesis, about to finish with school for the first time. My current end goal is vastly different from my original one. I thought I’d be getting a master’s degree and a PhD and go on to be a historian. Now I want to work in advocacy, and after this month I will be done with school forever.
Sometimes I’m really hard on myself. I see myself struggling to get my work done, especially now, looking at all the papers I have due for finals, and I feel like I’m just not working hard enough, like I should have ignored the disability and pulled myself up by my bootstraps Like Everyone Else. And when I started to include something in my thesis about how the “supercrip” trope makes the lives of people with disabilities more difficult, I stopped and realized with horror that I was doing the same thing to myself. I’m too hard on myself when my disability interferes with my success. I’m too hard on myself when my accomplishments aren’t the highest achievement ever, and I ignore the very real accomplishments I’ve made over the past year in favor of beating myself up about not getting a PhD, which is strange because that’s not even what I want anymore.
Sorry I went off on a tangent. I know you were talking about more in your post than just this, but this is the part that has been on my mind the last few weeks.
Don’t apologize, Kat. Your comments are tremendously helpful to me. I think a lot of what is driving me is the supercrip mentality, and my frustration that because of my disability, certain things are closed to me that I want to be open. For instance, there is no online PhD program in Disability Studies anywhere. (Inclusion, anyone? Any time now.) It kills me to see nondisabled people getting PhDs in Disability Studies, knowing that I can’t because of my disability. I keep thinking, “Well, maybe I could go and do that classroom thing again” and then I realize, “Yeah, and put myself through incredible pain in the process.” Yes, I could go and sit in classes and be completely physically overwhelmed and in terrible sensory and neurological pain — just like if I were a wheelchair user, I could get right out of that wheelchair and pull myself up a flight of stairs without a ramp to get to that class, every day. When I think of someone having to pull themselves up a flight of stairs to get to class, the indignity and the injustice of it are clear. But in my head, the injustice and indignity I’d be putting myself through is less clear, even though my invisible disability is no less real.
There is still this whole ridiculous idea in my head that I’m not trying hard enough, when I’m working incredibly hard almost all the time. And then I realize that if these things are closed to me, I really need to take that energy and start working with other people who also face these kinds of obstacles. That’s what’s driving me now.
I identify with this post. I have always felt marginalized, on the one hand, and destined for great things on the other. I sometime feel disappointed with how my life turned out, but I have to remember that I am productive and independent, and many people on the spectrum are not. If I was not on the spectrum, I would probably have been more aggressive and therefore more successful. Such is life.
Hi John,
As is the case for you, it’s the aggression I lack — although I more than make up for it with my sense of outrage.
I am wondering if you and many of the people who post here identified with Charlie Brown when they were growing up. He was the character who seemed to me the most like me, ordinary, but not, and for no obvious reason, expect his propensity to fail. What made me think of the comic strip was when you talked about how all the adults thought you would grow up to be successful because of your particular genius. Immediately I thought of Linus’ line “the heaviest burden is a great potential.” The funny part is that even though “of all the Charlie Browns, you are the Charlie Brownest” was Lucy’s description of Charlie Brown, every kid in the strip was a characterization of how reality collides with expectation.
That’s a great insight, Liz. I always identified most with Linus. He now seems to me the most Aspie of the bunch.
What about Schroeder?
I’d forgotten about Schroeder! Schroeder, too.
“I love humanity, it’s people I can’t stand!”
Linus vanPelt
I wander back into this corner of cyberspace and you’re doing that resonating thing again! I’ve been thinking recently of how I apparently once had potential and wanted to travel the world and change it too, and now here I am in my mid-40s, totally home-based and occasionally straining at the leash, but knowing that whenever I venture forth into crowds it will leave me drained, and that most of the time I will be left on the outside of the circle, and even in a small gathering of people there will always be at least on moment where everyone is talking to everyone else – except me. *sigh*
Glad to hear the studies are going well
Misfit! I’m so glad you’re back.
Rachel,
This past year has been one of significant change for me for a variety of reasons and it prompted me to sit down and really think about what I was thankful for this past Thanksgiving. It was a long list and I wanted to tell you that both you and your blog were on that list. So thank you for being you and for posting about it. You inspire me every day.
Brenda, thank you so much! I can’t even begin to express how much that means to me. I hope the year ahead brings good changes into your life!
Oh Rachel as I read this I am struck by so many things. Trying to articulate them can be so hard. I struggled with some of the fundamental decisions in my life and have often wondered—what if I went for my MD? PhD? And after ages of doubt I came to peace with my decisions simply because I believe some decisions are out of my hands and fate, religion or what ever you believe in takes over.
I can’t even begin to try and imagine what you went through. I can only hope among hope that if I reach out my hand, you maybe would take it.
I certainly would, Lizbeth! I certainly would.
Another beautiful piece. Many times in the past, before i realized about my AS, i would meet or see people i now recognise as probably on the spectrum too, or with some other ‘invisible’ disability. I would shy away from them, cos i KNEW i was like them somehow, but they were more ‘obviously’ ‘non-normal’, and i could see others rejecting them – and as i was hanging on to that ‘normality’ by the skin of my teeth i feared to associate with them. I feel a little ashamed of this now – not to mention very aware that all my efforts to be ‘normal’ brought me nothing but exhaustion, in the end. So i might as well have gone with ‘my own kind’ all along.
I empathise with the academic ‘wrong’ choices too. I’ve made my share – i’m sure my degree would have been finished by now if i had. But i would have paid an even higher price for it, i’m sure. I did what i had to do, given the burdens on me, and which i put on myself (the struggle to be normal, behave and be like everyone else, etc).
Kiwipen, I think that most of us are taught to avoid people on the margins. There’s so much shaming that goes on about being there — about being different, about being disabled, about not fitting in. I’ve done exactly the same thing, and it’s one of the things I regret most. So many lost opportunities to be with my traveling companions, and so many lost opportunities to be a true ally to others. Thank God I’ve found you all now.
I’m not sure how to say this without some people taking offense, and I don’t mean it offensively, so I’m just going to say it.
The post puts it as either/or. While there certainly is truth in that, there is also truth in recognition finding you because you are who you are. Your credibility with regards to autism and empathy, the autistic experience, and social justice doesn’t come from having been studied–though your studies certainly add to your credibility. It comes from being you and being able to stand up as yourself, however uncomfortable that sometimes is, and say, “This is me.”
The pride and the shame are both part of it. The success and the struggles, the failures and the relief are all part of it, too. Those of us who exist on the margins have our own heroes, and for many of us you’re among those heroes. It’s not the prestige and acclaim of Princeton. But it’s not being without prestige either.
You can shoot for the presence, audience, and the like, to ensure that your voice is heard, while still existing on the margins. They’re not mutually exclusive. It’s just a different road than the prestige of Princeton and Ph.D.s and the like.
Without trying to sound self-righteous, I’d rather surround myself with readers and allies who really, truly care about others, whether they have degrees or not, than surround myself with people who are more worried about their image than their impact. You have impact and you have expertise and credibility worth impacting the world with.
Stephanie,
What you say makes a lot of sense. I don’t think it’s an either/or in terms of doing something of importance in the world, because you can still be on the margins and do important and life-changing things on behalf of other people. I think it’s just a question of redefining important. I was raised with a certain image in my head of what that means, and it all had to do with external validation by people whom the society deemed authorities. I’m moving very far afield from that definition, into one that has to do with my actual impact on the lives of other people, whether anyone in the center notices or understands what I’m doing or not.
Far afield or not, I think you’re moving in the right direction.
I am an outlier, too. And was a prodigy as a kid- with parents who really did not know what to do with me. They wanted a normal kid, and got me instead, a precocious, ghostly force of nature. They fixed my wobbly crossed eyes (a result of albinism- my parents insisted I was ‘blonde’ and would eventually go ‘dark’). They dismissed my teachers raving over how brilliant I was and refused to let me skip grades. They tried to get me to come out from behind the stacks of books I read, and would get angry when I would get ‘stuck’ on some thing or another and regale anyone for hours about lizards, tape recorders, bugs, pond life, and whatever else had fascinated me. I had few friends because we moved a lot. My college fund was spent on starting a business. I joined the military, and learned a great trade, and kept learning.
I’ve only recently discovered that I am ‘on the spectrum’. I don’t have a formal diagnosis- its almost irrelevant at my age, and I am not sure if a formal dx would be an asset or a liability. Dr. Tony Attwood believes that a formal dx would change me from a second-rate NT to a first-rate Aspie. I am still thinking about that.
I decided that instead of standing outside other circles, I would create my own. I no longer tolerate nonsense, or being dictated to by ‘nypicals’, or backhanded insults like ‘high functioning’ or ‘gifted and talented’. I eschew mere tolerance and seek genuine acceptance. (And have found it.) I went through a lot of grief and poverty in the first 30 or so years of my life- playing by NT rules meant that I would always lose. I finally got it together when I found work- and people- that matched my particular needs. I finally earned enough and was confident enough in my ability to succeed that I purchased my first home a year ago. I was 50. Better late than never.
As for school- the world is my school. I find that I learn far more on my own than in a regimented classroom. The Internet is manna from heaven for me. I learned that I did not want to work for anyone who valued a degree above actual hands-on ability. That usually resulted an a bad fit, and early exit for me.
If I’ve learned anything it is this: one person’s ‘margins’ are anothers’ secret garden. My life, my rules.
Sunfell, I relate to so much of what you say. Being on the margins can, indeed, be a very fruitful place.
Rachel,
Your post spoke to me in so many ways. Thank you for sharing. I’ve fought my entire life to get to the margins, where the interesting stuff happens. It’s a shame more people don’t embrace life on the edges of average. Life seems to pull us towards the middle it seems.
Marc,
You know, it’s never occurred to me to seek the margins. I’ve always tried to flee from them — while casting a longing look back in their direction. I like framing this whole endeavor as a positive, because so much thoughtful, compassionate, interesting, insightful, creative stuff happens on the margins. It’s where people end up when they can’t “blend in” and that makes for some incredible potential.
Wow. Thank you for your insights.
[...] Julia Bascom’s “Quiet Hands” and Rachel Cohen-Rottenberg’s “The Path That Chose Me.” Self-advocates like Bascom and Cohen-Rottenberg proudly own their autistic behavior and [...]
Rachel
I read this right after you wrote it and it’s taken me this long to process everything. As always, this is a thought-provoking and beautiful piece of writing. It spoke to me very personally and I’ve been thinking about it for the last couple of weeks.
When I was 12 I was part of a national youth talent search, and I took the SAT and got the highest score in the country. As a result, I have been part of a longitudinal study of “precocious youth” over the last 25 years. The researchers send me surveys every few years with questions about my career and academic achievement, my marital and family status, and my subjective levels of happiness and sense of success in my life. They also send me the periodic reports with aggregate data from other study participants.
All through my 20s I answered the questions about my academic and career achievements with an increasing sense of shame and confusion. Some enormous percentage of the participants in the study got Ph.Ds. They were designing software for NASA, winning Pulitzer Prizes, and doing other Big Impressive Things. I dropped out of college, finished my bachelor’s degree in night school, and was earning $12,000 a year as a union organizer. I didn’t understand why, when I got the highest score on their goddamn test to begin with, I was consistently at the bottom of all the graphs in the follow-up reports. Other than the obvious: because I was just not trying hard enough.
At some point I stopped feeling ashamed and started feeling bitter and self-righteous. I didn’t want to work in academia or for a corporation (because that was working for The Man). I enjoyed a year or two of smug satisfaction at doing the opposite of what the researchers expected, at being the only study participant doing something politically subversive.
But some part of me still wanted to do Big Important Things in the social justice movement. The co-workers I admired were becoming executive directors of large non-profit organizations, or founding their own. And I failed at this too. I kept refusing promotions and switching jobs every time I got overwhelmed. Now I’m hanging on to my half-time position by a thread, earning a few hundred dollars above the federal poverty threshold, and doing a passable job at something I mostly enjoy. When I run into people I worked with during my early organizing career, they say the same kinds of things as my high school classmates: “You had so much promise—I always thought you’d end up doing something important.”
“There is no shame in being on the margins. There is only shame in believing that I am too important to be there.”
You just put into words my feelings about the last 20 years of my life, and this post has obviously had that effect on a lot of other people too. You are doing Big Important Things for your community. Thank you for writing this.
Thank you, Sarah. As you can imagine, I can thoroughly relate to everything you’re saying. I sometimes torture myself by looking up old classmates and seeing all the Big Important Things they’re doing, and I have that same feeling in my gut of “What happened? Why aren’t I doing those things?” It’s a learned response, based on the idea that such-and-such a gift means such-and-such a path. It’s such a simplistic rendering. It’s not my gifts that put me on a certain path. I’m already on the path. I have to learn to use my gifts in the service of the path I’m on.
@Sarah: “Other than the obvious: because I was just not trying hard enough.”
Isn’t that the truth we are taught to believe? “You are so smart/talented, why don’t you just apply yourself?” If only it was that easy. I have avoided high school reunions because I’m just not a “success.” I can’t handle having to explain myself to others.
Yet despite everything, I have done amazing things, but I’ve never been able to sustain anything for any length of time. My life/career graph would be extreme highs, plunging to extreme lows, and back again, over & over. Still, I wouldn’t trade ot for someone else’s life…
I am glad I drifted into this. I am struggling at the moment. (41 years)No Official dx but have spoken to dr.s about it. Autism runs in my Family. Testers in my youth spotted – high IQ BUT trouble Communicating. Plus My family and I knew I didn’t fit in. I was comfortable in my skin just not in everyone elses world. My Father (a high functioning aspie himself)had expectations of me functioning as well as he did. It was all supposed to be hidden from my Mom who didn’t like his/our quirky nerdy traits. Lets just say I was not supported.
Well anyway in my life, I did only the Not for Profit Stuff with a vengence and didn’t look back. I initiated half way houses and Buddhist temple etc…Studied Buddhist Philosphy and Buddhist psychology for 16 years and photography. Meditation retreats,fundraising and various not for profit and worked with Children. Some travel included. I did not have a Family.
Now,I have fallen ill and have regressed under the stress of not having anything or anyone to fall back on. My father lost everthing in the Dot com bust era and has not recovered. Now I have Anxiety and Ptsd in new ways.For the fist time in my life I really feel alone and disabled and ashamed, caged and poor, like I never had before.I realize I have no real friends even though I have been such a good friend to people. People liked me for reasons I am no longer able to be. I have lost my looks. LOL The only thing I have is my integrity and this lap top….and some humor too…Thanks LOL
Integrity, humor, and a laptop: Those are three of my basic survival tools! I think the same is true for many of us. Welcome!
Rachel,
Thank you for what you wrote….I have had such similar experiences it’s so surprising to hear from someone else so succinctly such a similar expression of it. I always felt so alone as a child and turned to books to provide me with companionship because real interactions were always so difficult and so hard because I felt on the outside of that circle you mentioned.
Three years ago, I met others with Autism and finally began to understand my unique brain….and about two years ago I also discovered yoga. What an amazing journey the last few years have been, and I now know what it feels like to be in the circle instead of outside….because my brain is starting to learn new patterns and new ways to cope and handle stress. I can, for the first time in my life live a happy life with others included in it without fear of a meltdown, freakout or panic attack.
Thank you for sharing your experiences…I want to share more of mine as well, and I thank you so much for leading the way!
Oh….I should clarify….I am now able to be in the circle, while still being the same (out of the circle) self I always was…I just don’t feel marginalized anymore. I accept myself the way I am, and others are beginning to see and accept me too! It’s amazing how when you view yourself as separate, that’s what you become. Accepting that I am separate, but still an important piece of the collective has enabled me to find more acceptance in this world.
Beautiful, Kandice! I’m so glad you’re finding peace on the journey.
Wow, Rachel. That was a beautiful essay. I’ve lived on the margins, too, and like you,I was a gifted child of whom great things were expected. The part of your essay that really resonated with me is when you spoke of circling around to come back to the same place.I wasted a lot of years doing that –trying to fit myself into a mold, the mold of “normal”person, where I didn’t belong and I always had to pick myself up and start over. Its part of the tragedy of us late-diagnosed aspies. We didn’t understand opurselves and, unable to understand ourselves, we couldn’t forgive ourselves for not living up to our early billing. A wise Frenchwoman once said that to understand all is to forgive all, and it is not until we finally discover who we are that we can find inner peace and begin to fully use our talents and skills.Don’t fret about dropping out of college and the like. A lot of us have advanced decrees which turned out to be totally worthless because we didn’t have the wisdom of self-knowledge.
“To understand all is to forgive all”: That’s the healing path, I think.
Happy Hanukkah and Merry Christmas to Rachel and her readers.
Chag sameach, John!
Happy Festivus!
Well said, well said, Rachel! Thank you so much for this wonderful piece. I have been analyzing my entire life in the new light of my adult diagnosis of Asperger Syndrome (at near 50) and this really is like a mirror of many of the thoughts that I have been experiencing.
I turned down gifted classes when I was in Jr. High. I have been wondering what would have been had I taken that path. I was told that I have “Superior Intelligence” I was also the kid who pushed up the bell curve and was hated by the other kids as a result. It sometimes seems that all of those expectations of great and grand achievements that were expected of me are like an accusing finger pointing out that I should have done better and done more.
On the other hand, I have always felt like I was on the outside looking in. I never fit in. I was one of the misfits. I was on the margins.
It is really helpful to read something like this. It helps us to know that we are not alone, even though we may feel very alone at times. Thank you again for putting this into words!
Thanks, Aspie Dad. I think a lot of what we’re dealing with is basic mid-life questioning complicated by a late understanding our disabilities. A very challenging combination, to say the least.
[...] The Path That Chose Me appears here by permission. [...]
Rachel… That was brilliant. Thank you, once again.
Glad to have you on the path, SP.
I worked hard at my trade for 20 years. I have always excelled at my work. Just not my work environment. People put up with my presence because of the work I produce.
I too was supposed to be somebody, instead I am rattling my tin cup and watching you flee. Aspie? It’s always been “Asshole”. How do I know it’s one and not the other? How do WE know, when a “Qualified” person tells us so? I’ve have 3 psychiatrists bet that I am NOT an Aspie, just a person with a “personality disorder”. They don’t listen, they just work within the boxes they understand.
Sigh, I too have been on the fringe. I understand it all too well, now I’ve slipped over to the other side of that fringe. It isn’t a nice place to be. I am thankful that you have stayed on the side you have. Disabled? Relative. If we can’t function within the parameters of our societal conventions are we not “disabled”, I don’t know. Outcast certainly. There are a lot of things I can do, obviously a lot of things YOU can do.
Time to go, time to give up on the day and wait for tomorrow. Perhaps it will bring something different with it’s dawning. One can only hope.
I’m so glad I followed your link here from your comment on the Diary of a Mom blog. Your first five paragraphs could just as well have been written about me. Reflecting on my life, after reading this post and many of the comments, I have an analogy I never thought of before: a trained seal. I received attention and praise for all the “tricks” I could do with my high intellectual ability, but reproval or disinterest for any natural seal behavior. No matter how well a seal imitates human behavior, it will never be a human. Even what earned me the approval of others, made me all the more obviously not one of them. Thankfully in the past year I’ve been treated by a wonderful therapist and psychiatrist. I’m now becoming satisfied with my own approval rather than chasing after the approval of others.
There are too many people trying to stay on the normal path. There is so much more freedom and joy on the margin. I’m glad to be there with all of you.
Cheryl, I’d say “Welcome among us on the margins!” except that, of course, you’ve always been here.
Your trained seal metaphor is perfect. I felt the same way as a child, and my being a pianist was the perfect expression of it. My parents would have people over, and inevitably, they’d say, “Wouldn’t you like to play something for us?” I felt so on display. I’d play in public recitals, and everyone would clap and tell me how talented I was, and my parents would beam with pride. But God help me if I was actually myself. Major drama ensued — derision, guilt trips, physical abuse, the whole nine yards.
I’ve come to realize that all the approval in the world for all the fine successes I’ve ever made hasn’t made me feel less lonely or more included. The only way I’ve begun to feel comfortable in this world is to get comfortable in my own skin. Sounds like you’re on the same path.
Thank you for sharing your insight. This Christmas we were able to provide my son with an iPad. I engraved it with, “Stay connected but always unique.” My son has autism but it does not define him. It is only a piece of him. He too, will find his path in life.
Amen, Julie.