Part of what’s driving this change is that I’m coming to terms with my own sense of brokenness. Trauma and loss have broken my old sense of myself and the ease of my trust in other people. A different sense of myself is emerging, and a different kind of faith, but the old sense of self and the old faith have been badly broken, and that is part of surviving trauma. It breaks your heart. It breaks your trust. You don’t put the pieces back together in the same way.

For a number of years, I insisted that everything was perfectly intact, that no damage had been done, that any damage I thought had been done was an illusion. There was shame there for the breakages that had actually occurred. There was shame in believing that something had broken.

My soul is not broken. My soul cannot be broken. But my soul lives in space and time, in a body, and the body hurts when the soul does, and the mind has to deal with loss.

And then there is my physical body — specifically, my back. The working theory is that I pulled a ligament between my spine and my hip at some point in my life.  For a long while, my body compensated as best it could, and I did not even know that anything was awry. I had a little tightness and soreness, but nothing alarming at all. And then, one day, my body’s ability to compensate broke down, my hip got too loose, and I ended up lying on the floor, barely able to move with the pain of muscle spasms all across my lower back. I could barely crawl to the bathroom for pain relievers or lift myself to the freezer for an ice pack – and once I got them, they barely worked. My body’s ability to compensate for an injury – an injury that I might have gotten sliding into first base when I was ten – had ended.

There is something broken there – a ligament that isn’t holding my hip in place. I’m doing all kinds of core strengthening exercises to compensate and hold my hip straight, and they’ve helped tremendously, but the ligament will never go back to what it was, and very occasionally, the pain flares up again. There was also some nerve impingement in the beginning, and a few times, the signals didn’t get to my knees and it momentarily felt as though I didn’t have any. I didn’t fall, but it was an odd and worrisome feeling. It’s one of the reasons that I got a cane — the other one being that the cane gives me a point of reference for walking with my legs parallel to each other and keeps my right hip from over-rotating. When my hip over-rotates, I’m risking a flare-up.

I’m not sure that it’s bad to think about my body as broken when parts of have stopped functioning optimally, although I can feel my mind resisting the whole idea. And I’m not sure it’s bad to think about my trust and my sense of my old self having been broken when it’s abundantly true, although I can feel the fear that arises when I do.

Perhaps the problem is that the word “broken” has such negative connotations. We think of “broken” as synonymous with “Devalue it and throw it on the scrap heap.” That’s what we do in this culture with broken things. We render them worthless and we put them out with the trash. It’s also what we do with people whose bodies don’t fit a narrow standard.

But I’m starting to redefine “broken” as  “Work around it.” Or “Reclaim it.” Or “Get a mobility aid.” Or  just “It is what it is.”

I don’t really want to reclaim every single bodily and mental experience. Some physical and emotional experiences are awful. But I need to be able to say simultaneously, “This experience gives me pain” and “I love this body I live in because it gives me life.” I don’t want to devalue myself or my body because other people have broken my trust, or because the PTSD makes my body hurt, or because my body is fragile and does what bodies inevitably do.

I’m not a thing to be ranked according to whether I meet some standard of “wholeness.” I’m a person who experiences brokenness, just like everyone else.

© 2013 by Rachel Cohen-Rottenberg

Not socially rejected. Shunned. By what used to be my synagogue community. For falling in love with my partner. For my partner falling in love with me.

He was serving as the rabbi when we met. After we made our relationship known, people who had formerly welcomed me would not speak to me. I lost my closest friends in the community. Others reacted with hostility to me in public. They put their bodies between my partner and me, blocking our path to each other. They held meetings to vent about our relationship. They responded to my friendliness with walls of coldness and detachment.

My partner lost his job. We lost the spiritual home that we loved. We lost our sense of safety. We had to move away — not once, but twice, because the first move wasn’t far enough.

After 10 years of marriage, we’ve moved 3000 miles away to start again. I am 54 and he is 68.

Starting over one more time wasn’t in the plan. And yet here we are. Together.

——–

Shunning is a form of psychological violence. It brings out all the hidden shame you didn’t think you carried anymore.

Sexual shame. Body shame. There-is-something-wrong-with-me shame. I-don’t-really-deserve-anything shame. The shame you thought you’d dispelled when you faced your childhood. The shame you thought you’d healed when you found religion. The shame that lurks in a culture in which we are never all right just as we are – not really. The shame that is always beneath the surface when the body is always suspect.

It’s a shame that thrives on silence – that proliferates in silence, until you feel shame for even daring to push up against being shamed. Until you feel ashamed of your anger at your silencing. Until you feel ashamed of your resistance against what has been taken. Until you feel ashamed to speak the truth of your own experience. Until opening one door in your soul to let in the light causes three more doors to close because you don’t deserve to live in the light.

Until you feel as though you can’t even breathe.

——-

Shunning creates an absence that is difficult to describe because its hallmark is silence – a frightening, wearying silence. Because others refuse to speak, to acknowledge your presence, to treat you as though you matter, there is no way to respond. A response assumes a listener. How do you respond when no one is listening? Words do not matter. All that matters is the shaming – the unnamed, unnameable shaming.

Nearly seven years into the shunning, I was diagnosed with the disabilities I’d had all my life: Asperger’s syndrome, sensory processing disorder, auditory processing disorder, vestibular issues, dyspraxia. That’s when the language of shame began to break its awful silence and bind my soul with words. Now the shame had names: Deficit. Disorder. Brokenness.

My body was wrong. My body was broken. I would never be right. No matter how many ways I starved my body, how kosher I kept my kitchen, how clean I kept my house, how intensely my empathy flowed, how kind I was to strangers, and how much I loved my family – it didn’t matter. I’d never, ever be right.

The feelings of wrongness that the shunning engendered and the feelings of wrongness that the language of deficit engendered became intertwined. In the light of my disabilities, I began to look at the shunning, and I began to wonder: Had I become a target because my differences, though unnamed, were so obvious? Did people believe that I was somehow less-than? And in my worst moments, I secretly wondered Were they right?

Not only had I been shunned by my community, but I was also entering a whole new identity as an openly disabled person, with all of the social isolation and rejection that came along with it. With my disabilities becoming more apparent in mid-life, I began to realize what most disabled people already know: that the world marginalizes us because of the ways in which our bodies work. I had been able to pass as nondisabled for much of my life, but by the time I was 50, full-time passing was no longer an option. I no longer had the energy. I had to work with my body rather than against it. I had to assert my needs. I couldn’t pretend to be normal anymore. And that put me outside the world as I had known it.

In the face of this dual marginalization, I lived my life in a battle between anger and despair. When the anger rose, I was determined to turn the language of deficit and disorder and brokenness into the language of blessing. If the “experts” said that people like me were hyperfocused on our obsessions, I said that I was passionate about the things I loved. If they said that we had splinter skills, I said that I had talents. If they said that we had deficits, I spoke of brilliant adaptations.

I reclaimed, and renamed, and rejustified my existence.

And suddenly, I realized that it was all wrong. Because ultimately, this reclamation project wrote me out of its script altogether. I was no longer talking about myself. I was talking about the gifts of Asperger’s.

My analytical mind, my focus, my visual acuity, my way with words, my musical talent, my passion for justice, my honesty, my sensitivity, my gentleness: these had always been my gifts. Not the gifts of Asperger’s. My gifts. But they were no longer mine. All those precious moments of pride and work and love and family that had made up the fabric of my life had been stolen from me and made the fabric of a construct I had never named.

The gifts of Asperger’s. The gifts of an abstraction, of a word that a stranger had created.

And as my sense of myself diminished, the shame became such a constant presence that I couldn’t remember what it meant to live without it. I couldn’t taste my food without the shame sticking in my throat. I couldn’t go to sleep at night without it laying down beside me. I couldn’t speak without using words embedded in it. I spoke in the oppressor’s tongue. I thought in the oppressor’s words. I was always ready to flinch, to apologize, to justify.

——-

I sometimes think about the process of healing in terms of uprooting the shame, but I’m not sure whether uprooting is the right word. I’ve been uprooted enough, and I know that tearing out something by the roots tears up the rich fertile earth around it, too. I’m not sure what the right words are. I just know that the unshaming process cannot be done piecemeal. For me, there is no working through the shame, or coming to terms with the shame, or getting past the shame, to use the language to which I was once so attached.

There is only a radical claim to my own body, to my own mind, to my own soul. There is only a radical claim to love my own being – a being to which no one else has the right to lay claim but me.

Perhaps others have the privilege of being able to rely on the names that others give. Perhaps others can readily find mirrors in which they see images that they recognize. But so many of us cannot. So many of us cannot rely upon a world of deficit and shame and apology to give us our names. The words of that world are not our words. They do not speak us.

So I find others who are learning how to speak their own names. I join with others who are unapologetic about how their bodies look, how their minds work, how they experience the world. I journey with others who are rejecting the language of shame and who are learning to open all the doors of the soul to let in the light.

I hope to meet you one day on this road.

—

I wrote this post in April of 2013 and it appeared on The Body is Not an Apology’s tumblr blog on May 1, 2013. It is reprinted here with permission.

© 2013 by Rachel Cohen-Rottenberg

It was a such a contrast with coming out as disabled at the end of 2008, with all of the fear and dread that attended that decision. There have been many times since then that I’ve thought that coming out as disabled was the worst decision I’d ever made in my life. If I could have put the toothpaste back in the tube at those moments, I would have.

Of course, I’m a few years down the road now and feel much more comfortable, proud, and confident. But oh, what a process! And of course, the process never ends. I always have internalized shame, and hatred, and fear to root out of my head. And I still have to deal with a  world of people who don’t understand the physical and social experience of disability. But in general, I navigate these waters much better than I did at the outset.

It’s very difficult to come out as disabled, I think, because we face the dual reality that most people a) hate our bodies absolutely unapologetically and b) consider that hatred entirely natural. It’s for this reason that they can use disability slurs constantly and think nothing of it. It’s for this reason that they can segregate and exclude us as though we’re substandard merchandise to return to the manufacturer. It is still considered natural to react with revulsion against us in a way that other groups have fought against more successfully — not entirely successfully, obviously, but more successfully.

Partly, we face this hatred because our culture worships control and denies the fragile and ever-changing life of the body. Partly, we face this hatred because the medical model has taken over as a metaphor for human life. People are no longer evil. People no longer make bad choices. People are no longer victimized by oppression. People no longer act out of ignorance, or selfishness, or greed. No. Now they’re sick, crazy, brain-dead, retarded, mentally ill, have low IQs, and on and on.

In the face of this hatred, it’s very, very difficult to convince people that you love your disabled body because it’s the one you live in. You say that you love your body, and people look at you as though you don’t quite understand your own reality.

My body hurts a lot these days. But I still love it. It’s the body I was born with. It enables me to experience life. Without it, I’d have no life at all. I might not love every sensation in my body, but I love my body, even on the hardest days, because it gives me life.

© 2013 by Rachel Cohen-Rottenberg

Shame is not something that most of us want to hear about. Many of us will listen to stories of any other kind of horror: sexual abuse, physical assault, hate crime, genocide. We consider it an act of courage when people talk about these things, and we give honor to the survivors by bearing witness.

But do we speak and bear witness to the debilitating and destructive nature of shame? Rarely. We fear rejection, judgment, social condemnation, isolation, shunning, so we don’t speak. And when we don’t speak, we can’t get a witness.

Truth be told, we often don’t want to hear about anyone else’s shame because it brings up all of our own. So if you’re still reading, thank you, with all of my heart. I know it isn’t easy to have come even this far.

I’m going to start by going straight into the heart of my deepest shame:

I DON’T LOVE MY MOTHER.

Lest you think my mother was a monster, she was not. I will not shame her in that way. Just to show you how very human she was, here is a picture of us, when I was about two years old. See how utterly ordinary we look? We were. We were just like anyone else. Human. Flawed. Fearful. Full of dreams. Trailed by demons. Capable of fucking things up royally.

But here is what I fear in this conversation: When I say that I don’t love my mother, I am afraid that you will think that I am a wholly unnatural and unloving being. That I am a freak. That I am missing some part of my soul.

Out of my fear and my shame, I will rush to tell you that I am, indeed, quite whole – capable of deep love.

Out of my fear and my shame, I will tell you that I still love my father (despite his many abuses) and that I miss him terribly.

Out of my fear and my shame, I will assure you that I love my husband as though he is the other half of my soul.

Out of my fear and my shame, I will protest that I love my kid with everything I am, and would willingly die to protect that kid against any evil that life can bring.

Out of my fear and my shame, I will let you know that I feed people on the street, and that I lie awake at night crying about the pain of the world, and that I am kind to small children.

And all of it is true. Absolutely, utterly true. But telling you that doesn’t push out the shame. It makes the shame worse, because now I’m justifying myself.

I suppose I must have loved my mother once, before everything happened. In fact, I remember very clearly, at some point in my twenties, feeling a momentary rush of love for her, and it nearly knocked me backwards. For a split second, my heart opened toward her, and then it shut right damned down. Loving her was dangerous. Loving her was foolishness. Loving her was an act of self-destruction. Being vulnerable in any way to my mother was dangerous to my ability to feel worthy of life. My openness to her sent me into spirals of self-hatred that terrified me.

I could do a recitation of all the horrors. The beatings by my father that happened only at the provocation of my mother. The hours that she would torture me by telling me what he’d do to me when he got home. The manufactured wrongs. The drama. The ways I tried to bribe her from my piggy bank to please, please, please, mommy, don’t tell. The sexual abuse she countenanced and then denied. The times I shouted for her and she never came. The years that I learned not to shout for her because it was futile. The ongoing mantra in our household that she was always, always, always right, and that everyone else was always, always, always wrong.

I could talk about my 20s and early 30s — about my rage, my despair, my spirals into suicidal thinking after every phone call. I could talk about the night my mother harassed me by telephone for three solid hours – the night my husband took me driving in Tilden Park while I screamed and raged and kicked the dashboard and then went into full-scale denial that anything bad had ever happened and that everything, everything, everything, EVERYTHING was all my fault. The night that my husband looked at me and said, “Sorry, but you’re screaming and raging and kicking the dashboard, and that’s not normal for you, so I’d say something pretty fucking bad happened.” The night that I still love him for, over 10 years after our divorce.

But that recitation is only more self-justification. Look how bad it was! How could I love this woman? It’s not my fault! It doesn’t really get to the heart of the matter.

In this recitation, I’ve left out one thing, and it has little to do with what my mother did and everything to do with what she felt: The woman hated me. I don’t use that word lightly. It wasn’t just dislike, or normal mother-daughter conflict, or not seeing eye to eye. She hated me. She hated who I was. She gave me praise when I erased myself. Otherwise, she treated me with rage, with contempt, with condemnation, with criticism, and with disappointment.

I don’t know why she hated me. I imagine that there was something in her that she needed me to complete and I just didn’t have what it took. (Should I be ashamed of that? No. But I am.)

The hatred in her went very deep. After I told her that I was going to break contact with her for awhile while I did some healing, and that she was not to harass me again without fear of legal repercussions, she took the whole family with her. No one in my family would speak to me again. Not my brother, not my uncles, not my cousins. No one.

She took away my family. An extreme act of hatred. An extreme act of shaming. When I tried to tell my uncle what happened, he shared with me the family message: You had no right to do that to your mother.

Daughters don’t get to tell their mothers to stop. They don’t get to take space to heal. They don’t get to tell them that they will find someone to protect them. They don’t get to be anything other than loving and self-sacrificing.

The loss of my family is so hard to talk about. It feels so shameful. I lost my family. They didn’t want me. Something must be wrong with me.

I began to hate my birthdays. I began to hate myself for being born of my mother. I began to hate myself for trying to survive. And beneath the hatred, there was shame, shame, shame without end.

After 13 years of estrangement had passed, my mother died in June of 2004. I found out in late May of 2005. One day, at my husband’s urging, I went to the computer, scanned the Social Security Death Index, and found that she had died eleven months earlier. That was it.

Did I cry? No. All I felt was relief. For the first time in my life, I felt safe. She couldn’t hurt me anymore. She wasn’t going to pop up when I least expected and tell me that I was unworthy of her love, unworthy of anyone’s love, unworthy of life itself. It was over.

How could I feel that kind of relief? Daughters aren’t supposed to feel relief when their mothers die. They are supposed to wail and keen and miss their mothers and talk with their friends about how hard it is and how nothing will ever be the same.

But I couldn’t do that and I felt ashamed of that. What was wrong with me?

I carry a giant absence inside myself where my mother and her love ought to be. And inside that absence, the shame spills endlessly. How could there be that absence? Why didn’t my mother love me? Why did she take my family away from me? What was wrong with me?

I’m not sure what to do with this shame and this absence. I’m not sure at all. In my rational mind, I know that all of this shame is a crock of shit. I know that my mother’s lack of love was not my fault. I know that she unleashed her demons on me and didn’t care. I know that other people get to fuck up royally every goddamned day of the year, and they’re not punished with condemnation and abuse and the withdrawal of love. I know that I should be allowed to be one of those people, too.

But the shame remains.

Maybe I’m not the only one. Maybe someone is there who, in the silence of their heart says, Yes. This is what I feel too. Maybe this shame will peel off me one day, and I will just be a human being who doesn’t need to protest what a good person I am. Maybe one day, after I’ve written enough and cried enough and spent enough sleepless nights wondering what the hell happened, I will just be a human being who says, I know who I am, and I know that I’m flawed, and I still deserve to be loved and held, no matter what.

This burden of shame is too heavy. I don’t want to carry it anymore.

© 2013 by Rachel Cohen-Rottenberg

Part of what has sparked this nostalgia has been reconnecting with an old friend from high school. I find myself traveling back to when we last saw each other. We were 18. It’s been over 35 years — a whole lifetime. And I wonder at how young we were, how unformed we were, how we were barely out of childhood, and how we have aged and weathered so many things in the interim.

But mainly, I think about the difference between who I am now and who I was then. In some ways, I am still that innocent kid, with the Mensa-level IQ, and the acceptance letters from Ivy League schools, and the faith that my intelligence and my good heart would open doors and make my life the privileged haven everyone told me it would be.

Because yes, I grew up very privileged. White and solidly middle-class, I had the best of everything: the best schools, the best arts programs, the best neighborhood, and the best and highest of expectations. Home was a nightmare, but it was a nightmare that I knew would one day be over. I was not trapped in it. I had choices. I had a plan. I had an escape.

But I didn’t have as many choices as I thought I did. I didn’t use the word “disabled” back then, but even in high school, I knew that people could do things that I couldn’t do — and I knew that I understood things they could not see. I didn’t know how to define it. I didn’t understand all the neurological glitches and processing difficulties and unfiltered perception that made my life so much more work than I was perceiving in other people. But even in high school, I knew that my life would not be what I had planned, nor what my parents were planning. I knew there were worlds I could not navigate and had no interest in navigating. I knew that I was going in a different direction. I cried all the time.

Realizing that I have multiple disabilities here in the middle of my life has really been about a loss of privilege. I’ve been angry about it, and I’ve grieved it, but mainly, I think about how incredibly privileged I am to be grieving the loss of privilege. What does it say that I have had to adjust to what most people deal with in utero? I have railed against the loss of privilege with all manner of words that come down to Why Me? I only started moving on with my life when I could answer with Oh, for God’s sake. Why Not Me?

I still have so much privilege. I live in a great apartment in a secure building. I don’t worry about food or clothing or medicine. I have my husband with me and my kid less than a mile away.

And yet… What is it about being disabled that always brings up the words and yet?

Part of it is a lack of access. I was abundantly fortunate to have had a very good career for fifteen years. And then I left it to raise my kid, and by the time I was done, my disabilities were in full bloom, the time for passing had long since passed, and I could not find an accessible environment in which to work. I miss that. I miss the daily collaboration of work. I miss the routine. I miss the projects and the work friendships and the busyness of it. I miss the old identity. I miss the social respect.

But it isn’t just about access. Not exactly. It’s more a sense that the world wants something I can’t give it, no matter how hard I’ve tried. It’s not enough that I’m smart and good-hearted and hard working. The world wants me to be normal. That is the baseline. That is the condition under which everything else takes place. And I simply can’t do it. I never could do it. I tried very hard. And for awhile, I was able to compensate. But I’m not interested in compensating anymore. I’m interested in living comfortably in my body. That just isn’t possible when you’re compensating all the time.

So that kid, who thinks that her brilliance and lovingkindness are going to be just the ticket, is still very much a part of me. She’s still looking around, wondering why it doesn’t quite work that way. But there is also the adult, who knows that the gig was up a long time ago, and that it doesn’t matter how many of the trappings of normalcy I’ve acquired. I’m not normal. I will never be normal. I don’t ever want to be normal. Why would I want to aspire to a statistical construct created by 19th century eugenicists? Does that sound like a fun way to live?

I have so much to offer the world. And yet, I can’t give it what it wants more than anything: normalcy. So I seek out people who don’t care about normalcy. I serve people who don’t care about normalcy. I serve people in the park who are hungry and homeless — many of whom are disabled, and all of whom are way further to the right of the bell curve on non-normalcy than I am. I think that is one of the many things I love about what I do three days a week: I distribute lunch to people who don’t expect me to be normal, who aren’t judging how far I fall from it, and who really couldn’t care less whether I fulfill the ridiculous expectations of some fictional idea.

So, oddly enough, and despite the undeniable privilege I still enjoy, I have found a source of connection among the most dispossessed people in my community. I work to make my privilege work for them. I do my best to take my privilege and wield it for the sake of people who are about as far from privilege as one can get. Right now, that’s the best I can do.

© 2013 by Rachel Cohen-Rottenberg

I’ve been thinking a lot about stories lately — about the stories I tell about myself, about the stories I tell about other people, about the stories people have told about me, about the stories the media tells about everyone. I don’t fault people for telling stories. It’s what we do in order to makes sense out of our existence. As Arthur Frank writes, we are beings who, in order to make life habitable, must tell stories from the narrative resources available to us:

“To say that humans live in a storied world means not only that we incessantly tell stories. Stories are presences that surround us, call for our attention, offer themselves for our adaptation, and have a symbiotic existence with us. Stories need humans in order to be told, and humans need stories in order to represent experiences that remain inchoate until they can be given narrative form…  We humans are able to express ourselves only because so many stories already exist for us to adapt, and these stories shape whatever sense we have of ourselves… ” (Frank 2012, 36)

One of the things that comforts me in this life, especially when I feel barricaded in by the absurdities of the things that people say, is to remember that we can rewrite these stories. If we are all inveterate storytellers — incorporating pieces of different narratives and creating new narratives from what exists — then we can always reinterpret and rewrite our stories. We are always free to engage that process. The problem is that stories often masquerade as fact, and we feel cut off from rewriting them at all.

To say that a story isn’t fact doesn’t mean that it’s entirely fiction. The stories that people tell always have truths in them somewhere. But they are not necessarily truths about the purported subjects of the story. A story about me might contain no truths about me at all.  It might contain  truths about the storyteller’s fears. It might contain truths about the storyteller’s trauma. It might contain truths about the storyteller’s desire for power.

There are two sets of stories that plague me. One set consists of the negative stories that people have told about me or about people like me. These stories tend to be pathologizing. Sometimes, they are so ubiquitous that it is difficult to have the strength to analyze, reinterpret, rewrite, and rethink them. But I’m coming to see that it’s the stories that I tell myself about myself that are the most troubling. Some of these stories incorporate the larger narratives, sometimes by design and sometimes unintentionally. Others are a rebellion against the larger narratives. It would be impossible to avoid responding to these narratives in some way.

These days, there is one story of mine whose validity I’ve been calling into serious question. It has to do with Post-Traumatic Stress Disorder (PTSD).

I’ve been dealing with PTSD for nearly my whole life. It began over 50 years ago, when I was four years old. I wasn’t diagnosed until I was in my thirties, and that diagnosis was like the heavens opening up and the angels singing. I know that it sounds like a strange thing to say about a PTSD diagnosis, but how else can I describe the way in which the PTSD markers  — the core narrative elements of the PTSD story — mirrored my own story so well? Suddenly, someone was narrating my story in a way that I recognized.

Over time, I learned to navigate and handle PTSD triggers. I learned to distinguish between a trigger and actual danger. I learned how to detach and breathe and not react when the catastrophic thinking started. I got very good at it.

And it worked for a long time — until a whole new level of protracted trauma came along, triggered the old trauma, and gave me a whole new set of things to heal from. It took me a long time to recognize the new trauma as trauma, even though it went on for 11 years. My husband and I moved to California this year, just to get away from it.

In order to cope all these years,  I’ve told myself a story about how well my old adaptive patterns were working. And so, in true PTSD fashion, I went back to the story that had served my survival as a child — the story in which I was always the person who has it together, who figures it out, who doesn’t show weakness, who helps other people, who never asks for help, who is always on top of things, and who is somehow beyond regular, garden-variety human needs. In other words, I have spent the past decade or more dealing with PTSD by telling myself a story that  am not traumatized. Not really. Maybe I used to be. But surely, not anymore.

Right.

These days, that story is showing itself to be largely fiction. It began a few days ago, when my husband left for a visit to the east coast. I felt tremendous sadness. I looked at the sadness and thought, “What is that doing there?” I started to ask the sadness what it was trying to show me. And within three days, I got the message: my body is absolutely racked by trauma. For the first time in my life, I am fully inside my body and it is incredibly painful. The level of stress, of sheer physical tension, of never feeling at ease, of never feeling safe is constant. I look at some of the things I do, and I see how hypervigilant I am.

For instance, there is the way I sit on the sofa and use the computer. Here is a picture of my sofa:

[The photo shows a picture of a futon with a blue spread in a mandala design. There are four white pillows along the back and some beige carpeting is visible in front. A small wooden end table is visible to the right.]

It’s a futon that doubles as a guest bed. It looks very beautiful and comfortable, doesn’t it? But do I sit on this futon comfortably, leaning against the pillows, relaxing? No, I don’t. I sit on the edge, next to the table, with one foot on the ground, looking like I’m ready to fight an intruder who is about to mercilessly fuck with me.

You can see why my story about not being traumatized isn’t exactly working.

One of the things I have noticed recently about my attempt to fend off PTSD is that I have bifurcated the telling of my stories into public and private. In my public writing, I will talk about disability quite openly. But privately, I rarely talk about it at all. For instance, I wrote to my regular doctor today about whether she could help with a letter of medical necessity for a service dog for PTSD, and her response was along the lines of “We’ve never talked about your PTSD. We really should.”

It’s true. We never have. I wrote her back and basically said, “We’ve never talked about most of my disabilities. We really should.”

I’ve been seeing this doctor since May. She knows about my auditory processing disorder. She knows about the problem with my hip. But she does not know about my Asperger’s diagnosis. She does not know about my recent diagnosis of mixed receptive-expressive speech disorder. She does not know about my dypraxia. She does not know about my severe vestibular issues. She does not know about my sensory processing disorder. She only learned about my PTSD today, and I’ve been dealing with that since I was four.

Why hadn’t I talked to her? Partly, it’s that I’m so wounded by many of the assumptions that people make about my disabilities that I almost can’t bear it anymore. I have had so many bad experiences. And of course, the PTSD gets in the mix there, because the PTSD says, “Right. Don’t talk about it. Don’t show any vulnerability. Act like you’re fine.”

I told her why I hadn’t raised the issue. And her response was, “I understand your hesitation.”

So it looks like we’ll be having that conversation after all. I will also be seeing someone for EMDR (Eye Movement Desensitization and Reprocessing) therapy. And I’m making tracks about getting a service dog. I can’t continue to talk about disability publicly and pretend privately like everything is fine.

I sometimes wonder whether passing as nondisabled isn’t sometimes an expression of PTSD. I mean, who wants to deal with all of the crap that gets thrown at us around disability if they can help it? Over the past couple of years, I’ve done everything I can to avoid as much of it as possible. But now I’m tired and my body hurts. It’s time to start telling the people I know in my daily life, not just in my writing.

Perhaps it’s safer to talk with all of you about it. If you’re reading this piece, it’s because you have some connection to the world of disability. But most people do not. And they’re the ones I have to start addressing, even when I feel like one more refusal, one more ignorant response, one more uncaring word is going to break my heart.

References

Frank, Arthur. W. “Practicing Dialogical Narrative Analysis.” In Varieties of Narrative Analysis, edited by James A. Holstein and Jaber F. Gubrium, 33-52. Thousand Oaks, CA: Sage Publications, 2012.

© 2013 by Rachel Cohen-Rottenberg

Living in disabled bodies, we do well to choose our battles wisely. There are days that our bodies are fine with engaging the ableism of the world around us, and there are days that we have to save our energies for other things. Of course, at times, we must engage and struggle and push back in order to protect body and mind, but there are also times when making the choice to not engage is itself an act of empowerment.

Activism can take many forms. As disabled people, doing what we need to do in order to take care of our bodies and minds is a powerful form of resistance and activism. Don’t let anyone make you feel less than worthy and powerful because, in the face of the ignorance of others, you simply take care of yourself and go on your way.

© 2013 by Rachel Cohen-Rottenberg

I had an experience this week that put me in mind of a way to get past the resistance to advocating on my own behalf. I now think about advocacy as advocating for my body, rather than for myself. When I think of my body as asking me to advocate on its behalf, I find it much easier to say, “Okay, sure. I can speak right up.”

I stumbled upon this trick of the mind this past Sunday, when an online meeting that had been scheduled for 2 pm got canceled at the last minute because some of the people couldn’t make it. My body went into a neurological tailspin. The problem really wasn’t that I was inconvenienced, per se; the problem was that I had structured my entire day around the meeting in order to take care of my body. I had to save spoons in the morning just to get ready for the meeting, so I had done nothing else that morning at all.  I hadn’t scheduled anything after the meeting so that I’d have time to rest. With disability in the picture, I have to make sure that any time I know that I’ll be working hard (and a meeting with other people is always working hard), I clear a lot of space around it. When I’ve done that and a meeting gets canceled, I have a hard time shifting course.  It’s not because I am inflexible and impatient, but because everything in the day has been structured around the thing that didn’t happen, and my body has garnered all of its energies to prepare for the working time and the resting time on either end. It doesn’t quite know what to do when it’s been for naught.

When I found out that the meeting had been canceled, I got upset, and I realized that I needed to say something to the other people about it. I know that things come up at the last minute that can’t be helped, and I can go with that, but I needed people to know that, when it’s possible, I need more notice. I need people to remember that my body works differently from theirs, and that what looks like a two-hour meeting is a whole day affair for me.

What really surprised me about the situation was that I was not angry at the people involved at all. They are all great people and it wasn’t their fault. They didn’t know how my body works. If they had known about this particular need, I’m sure they would have factored that into the process. Instead of anger, all I saw was that my body was yelling at me to defend it. I had always mistaken that level of urgency for anger, but it isn’t. It’s my body screaming at me: “Come on, Rachel.  Come on. Say something. NOW. DEFEND MY NEEDS. Help! HELP! Don’t hesitate. Act!”

It was so amazing to look at my body as though it were speaking to me. It made it so much easier to advocate on its behalf. The level of compassion I felt for myself was so much greater than what I usually feel in a situation that involves the collision of my body with the able-bodied world. I usually have a war with myself about whether it’s even worth it to speak up; I usually worry whether I will be met with resistance, anger, impatience, or ignorance. But when I was able to look at my body’s signals, I just thought, “Oh, my body is in serious distress. I need to say something about how to keep my body out of pain. Right now.”

I got an apology, which I appreciated, because I knew I’d been heard. But really, an apology wasn’t necessary, because no one had known in advance what the impact would be. The most important thing was that I was able to say, “My body works differently from yours and it is yelling at me to say something, and I am going to stand up for it.” That’s huge for me. And it’s a welcome change.

© 2013 by Rachel Cohen-Rottenberg

Ordinarily, I’d take the bus to the job and walk the four miles home. I love walking and it’s a nice way to relax after working during the afternoon. But on Friday, I was incredibly tired and I decided to take the bus back.

When I picked up the bus at 4:45, it was crowded and all of the accessible seats were taken. Some of the people using them were clearly disabled; others did not appear disabled, but might have been. My general policy is this: Unless I see someone who is very clearly nondisabled sitting in an accessible seat — such as a young man with a skateboard — I won’t ask the person to get up. I won’t make assumptions. For all I know, a young person who doesn’t give up an accessible seat might have an invisible disability, and I’m not going to question anyone. I pretty much depend on other people’s sense of decency around this issue; if a person doesn’t need the seat, I depend on that person to get up. Often, that works out well for me. Occasionally, it doesn’t. But it’s worth it to me to not question a person as to whether they’re really disabled or not. I’ve had that happen to me too many times to want to run the risk of doing it to someone else.

So I went to the back of the bus, where the aisle is narrower. I had a pull cart with me that had a few very light things in it. The bus driver told me that I couldn’t have the cart blocking the aisle, and that I had to put it in the luggage area at the front of the bus. So I traipsed down the aisle with my cane in one hand and the handle of the cart in the other. I put the cane down, picked up the cart, put it in the luggage rack, picked the cane back up, and went back to my seat.

As I was doing this, I was wondering whether I was confounding people’s expectations of a person using a cane. Were they surprised that I could stand on my feet long enough to pick up a cart and put it in a compartment three feet off the floor? Did they think I was faking disability? I’m not sure. But I was very interested in the contrast with how I used to feel walking through the world with only invisible disabilities. Before I used a cane, I generally had people assuming I was nondisabled and perfectly capable of doing everything in a “normal” way, and I was aware that they were rather shocked to discover that I’m disabled. Now, I generally have people assuming that I am disabled, and I’m always aware that they may be shocked when they see me doing things in a “normal” way.

No one said anything. I didn’t sense anyone giving me the evil eye. But I wonder about it. There is a self-consciousness I feel now that wasn’t there before — a sense that other people might be expecting me to live down to expectations. It’s very odd. Living down to expectations has never been my style. So it gives me a sense of power to just do what I need to do, whether it confounds people or not.

© 2013 by Rachel Cohen-Rottenberg

As many of you know, I’ve done a lot of work critiquing research into autism and empathy — both in my academic life and online at my Autism and Empathy site. One of the driving factors behind this work was an experience I’ve been afraid to talk about. To put it as briefly as possible: the research conclusions surrounding an alleged lack of empathy in autistic people made me question when I am really empathetic at all, and they filled me with doubt and dread for a very long time.

I’ve spent much of my adult life describing myself as an empath, and I have always read emotional and social process very well. But then my autism diagnosis came along and voila! I was supposed to be deficient in empathy. In fact, I read study, after study, after study showing that autistic people have an empathy disorder, and the cold voices of authority started getting into my head. That was bad. Very bad. What Sartre wrote about the Jewish people applied equally well to me as an individual:

“They have allowed themselves to be poisoned by the stereotype that others have of them, and they live in fear that their acts will correspond to this stereotype.” (Sartre 1960, 95)

“Poisoned” is right. I was sick with fear and doubt. A year or two ago, I finally got up the courage to check the whole empathy question out with the people who know me best: my husband and my kid. I started with the kid, who was still a teenager at the time. I said, “Ash, do you think I’m empathetic?”

Ash looked at me in a way that only teenagers can look at mothers: with a mixture of impatience, love, and something bordering on anger for wasting their time. With an eye roll, my kid spoke the following immortal words;

“Mom. YES. You are very empathetic. Exhibit A: MY ENTIRE LIFE.”

I felt relieved. Later in the evening, after my husband came home, I related my conversation with Ash and poured out my relief as he made himself toast at the kitchen counter. His response? He was uncharacteristically brief. “Good,” he said. “No need to ask this question again.”

Somehow, those two conversations allayed my doubts. I couldn’t write about it for a long time, though. I couldn’t acknowledge publicly the kinds of doubt the research had raised in me. But I can do so now, because I’ve come to understand that I wasn’t just having an experience of personal insecurity. I’ve come to realize that this kind of doubt is common for people in all kinds of marginalized groups. I’ve finally seen the ways in which those with cultural authority speak for us, ask us to prove our experience with numbers and graphs and research papers, and then tell us that our experience means nothing because it doesn’t match their findings.

The rather obvious conclusion to draw from research findings that don’t match reality is that the research findings are wrong, but of course, that rarely happens. The research findings take on the authority of truth, and the experiences of people who actually live in the bodies being researched mean very little.

Put another way: The truth means very little. The story that is constructed, however, means everything, and we find ourselves spending massive amounts of energy arguing against the story, both within ourselves and with everyone else. Patricia Williams writes about studies on race in a way that rings true for me as I recall all the many hours I’ve spent refuting autism research:

“One of the great difficulties of pseudo-science is that it is so hard to refute just by saying it isn’t so. The logical structure — if not the substance — of pseudo-science posits what purports to be fact; it requires counter-fact to make counter-arguments. Black people find themselves responding endlessly to such studies before we can be heard on any other subject; we must credentialize ourselves as number-crunching social scientists quickly in order to be seen as even minimally intelligent… Real numbers, real science — it’s what school teaches us to revere. And it makes anyone who knows the great messy, unprovable contrary, who knows the indecipherable complexity of black or white people, who knows the reality and the potential of all humanity — us silly egalitarians — it makes us unintelligent, uninformed, powerless, and naïve.” (Williams 1998, 49-50)

“Real numbers, real science” — how do these things even begin to compete with the delicious, messy, complex, living, breathing nature of human experience? They don’t. They can’t. They can never even come close. They only put us into hierarchies: black/white, normal/abnormal, able/disabled, and so many others.

Do I regret that I spent so many hours critiquing the research? Do I wish I’d said instead, “To hell with your studies, to hell with your questionnaires, to hell with the careers you’ve built on the backs of people like me”?  In some ways, yes. But in other ways, I am glad to have been able to spend some time in the belly of the monster, because I got to know its way of being very, very well and I got to see how very barren the belly is.

The monster doesn’t scare me anymore. It’s been banished. And when people try to raise the monster back up, I find myself wondering why they’re wasting their time believing in an apparition.

References

Sartre, Jean-Paul. Anti-Semite and Jew. New York, NY: Grove Press, 1960.

Williams, Patricia. Seeing a Color-Blind Future: The Paradox of Race. New York, NY: Farrar, Strauss, and Giroux, 1998.

© 2013 by Rachel Cohen-Rottenberg