Disability and Representation

Changing the Cultural Conversation

Shunning, Shaming, Renaming

For the past 11 years, I have been shunned.

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


    4 comments already | Leave your own comment

  1. 10/17/2013 | 1:49 pm Permalink

    Wow. So much of what you write resonates with me that I sometimes cannot compose a comment because I do not want to overwrite your experiences with mine even while I am thinking “me too! me too! me too!”

    Our experiences are not identical. I had to flee my upbringing for different reasons (I suspect) from those compelling you flee your spiritual community, but the shame and the feeling of linguistic exclusion or loss or homelessness are at least similar enough that your writing sounds familiar as I read it through the first time. And that is kind of astounding to me. In a good way.

    I am trying to learn how to re-home my own body, only this time with myself instead of someone I am looking to for rescue (tried that many times. never works). And I am also in the middle of what has become an interesting rhetorical project of either finding/coining language that comes closer to naming my experience or trying out what it might be like not to need those names so badly.

    I am not sure, but the second thing might be impossible for a social animal whose sociality consists largely, if not solely, of language. But I have never let impossibility deter me from trying a thing.

    So.. ::offers handshake::

    I am going to try to write more about my own experiences soon on my own (neglected) blog. I will let you know if/when I manage to do so and if you are interested you can read about them and if you are not you can ignore them altogether. :)

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  2. 10/18/2013 | 4:00 pm Permalink

    Thank you for this. Thank you.

    “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.”

    Ow. OW. True. So true. So very true.

    This post helped crystallize something for me, it filled in part of an argument I’ve been making for a long time: the fact that I am creatively gifted is an awesome thing about me, not my mental illness.

    I posted my thoughts here.

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  3. 10/20/2013 | 7:19 am Permalink

    Shunning is very pernicious . It curses both him that gives and him that receives. Although obviously being on the reciievung end is far worse.
    It forces bystanders into a stance one way or another. Shunning is evil.

    Shunning and shaming cut at a victims sense of self. It makes people feel as if their very core is worthless.. Everything that they are is zero.

    These tactics remove a victim’s connection of the body to their mind and spirit. Healing involves reconnection of the person as a whole being. Someone who does not have to prove anything or be anything. But just be. And by just being who you are you are love.

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