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
Yesterday was National Coming Out Day. I officially came out as bisexual, and it was a celebration. No angst. No fear. No second thoughts. Just a celebration.
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
I have been feeling a lot of sadness these days. It’s almost a sad kind of wonder. I look back over my life from my perch here in my 50s, and I think about how differently my life has turned out from what others had planned for me — and from what I had planned for myself.
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
As I go out and distribute food to people living in the park, I see and hear things that nearly break me apart. Here’s what I’ve seen and heard over the past week. This is how our fellow human beings are living.
An elderly amputee stops me to talk about shooting squirrels for food.
A vet in his 60s tells me that a blind man is losing weight and coughing up blood. The man moans all night. He is dying. Outside. Alone.
Two men sitting on a bench tell me that they have had nothing but water for two days.
Two women are lying on a blanket together, comforting each other. One has a black eye.
A squad car arrives in the meadow where homeless people congregate and sleep during the day. A police officer and two park rangers are telling a group of people to move on. The group consists of men and women of all ages, including an elderly woman. They might have been drinking or smoking, which are forbidden in the park. The park rangers are often checking to see what is going on in the meadow.
People in the group are screaming at the police officer and the rangers. Some are gathering their possessions and dragging them away. On the pedestrian bridge above, people with food and clothing and shelter are staring at and mocking the homeless folks being dispersed below.
I maintain very clear boundaries when I am in the park. If I see the police or the park rangers talking to people, I hang back. They have a job to do and I give them space to do it. Before I go over to people and offer food, I observe them very carefully. If I sense anything awry, I move on. If people scream at me, I don’t get into it. If other people scream at them, I just observe and continue on.
My job is to offer food, kindness, respect, and courtesy to people who are hungry and homeless. I see so much now that I never saw before. Most people don’t see it. I didn’t see it. Now I can’t unsee it. I don’t want to unsee it, ever.
© 2013 by Rachel Cohen-Rottenberg
I talk a lot about pushing back against ableism — about confronting people, deflecting their microaggressions, and speaking our bodies’ needs. But I also want to say very, very clearly: constructive non-engagement is a perfectly valid form of activism and self-advocacy.
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 interesting moment at CVS tonight.
I walked over to the store to pick up an epi-pen. (Yesterday morning, I had my first allergic reaction to a bee sting ever, so I’ve been working on getting an epi-pen all day.) To pick up a prescription at CVS, you have to stand in a line by the pick-up counter at the back of the store. Tonight, the line consisted of an elderly white man in front of me who was holding a cane, and a younger African-American man behind me. I was standing between them with my cane as well. The elderly man in front of me was easily 80 years old and fairly unsteady on his feet. He was leaning against the shelves and looking quite tired.
As we were standing there, a young and apparently able-bodied white dude came over and asked the elderly man, “Are you in line?”
He said “Yes, I am. I’m picking up a prescription.” The young man looked at me for confirmation, and I gave him an emphatic nod — as if to say, “Why do you think we’re standing in line here? For the view at the back of the pharmacy?”
And what did he do? He cut in front of the line. He went right up to the pick-up counter for his prescription. I kid you not. I could hardly believe my eyes. Thanks be to God the woman behind the counter told him he’d have to wait his turn. When he realized that he had to stand behind the rest of us, he left.
These kinds of microaggressions are so disturbing to me. A line is one of the few democratized spaces left. You get in line and you wait your turn. And for the love of God, you do not cut in front of an elderly man who is unsteady on his feet and clearly laboring to stay standing. If I hadn’t been so tired, I’d have said, “Nice try throwing around your privilege, pal.”
I just don’t understand that level of chutzpah. I don’t think I ever will.
© 2013 by Rachel Cohen-Rottenberg
I heard a disability slur the other day that I’d never run across before. It was in a social justice context (surprise surprise), and one commenter said to another: “If you really believe that, you probably shouldn’t go out without a carer.”
Ah, yes. It’s the ultimate insult: Being disabled and needing a caregiver. Wow. Is that the hierarchy in which most people live? Yes. Could the hatred be any clearer? I don’t think so. That kind of thinking speaks volumes about how even the most enlightened radical folk see disabled people — which makes such radical folk not radical at all, but really quite mainstream.
I am always pushing back against this kind of talk. I am always asking for people to stop using disability slurs. But on days like today, I wonder whether I shouldn’t just be quiet and let people have at it. At least, that way, the degree to which they despise us would be out in the open.
Perhaps I should just collect all of these instances and publish them. That way, no one can say, “Oh, no, no, no, no. Don’t be ridiculous. There is no such thing as disability hatred.”
© 2013 by Rachel Cohen-Rottenberg