I’m going through a sea-change in my thinking about the concept of “privilege.” I find the word so thoroughly problematic that I don’t think I can be effective in my work and continue to use it.
My friend Kiera Scriven has written that the word “privilege” is a misnomer. When we talk about “privilege,” we’re really talking about rights:
A “privilege” in this case is something unearned, correct? “Unearned privileges” is how we tend to conceptualise it. But let’s think about some of these “privileges”: 1) Not being automatically perceived as criminal 2) Being given the benefit of the doubt in these and all kinds of situations 3) Fairer housing practices (see: Wells Fargo settlement in Baltimore) 4) Seeing positive and powerful representations of yourself everywhere 5) Being deemed as “normal” 6) etc…
Are these things we want people to have to /earn/?…I think these are aspects of basic humanity that should be bestowed upon everyone simply for existing.
So feel free to call it whatever you want, but I caution you when your concern is the fact that majority groups have these things — these things they haven’t “earned” — as opposed to the fact that minority groups don’t have them.
Starting with Kiera’s formulation, let’s get clear about what people mean when they talk about “privilege.” To ground the conversation, I’ll get as specific as I can: What does it mean when people say that I have white and middle-class privilege?
It means that I live inside a political, economic, social, and cultural system that gives me power on the basis of my skin color and class — both accidents of birth. I get a whole lot out of that power: money, education, housing, food, clothing, medical care, medical insurance, and cultural authority. The police don’t look at me in the street as though I’m a criminal. I’m not stopped for driving while white. I don’t run much of a risk of being shot for knocking on someone’s door for help. I live in an apartment in a secure building and do not have to worry about a rental application being discarded on the basis of my skin color or income. I have clothing for all kinds of weather and medicine when I need it. When I economize at the grocery store, it’s by choosing between one thing I want to eat and another — not by going without nutritious food.
Are any of these things privileges? No. It’s not a privilege to have an apartment. It’s not a privilege to have clothes. It’s not a privilege to knock on a door and not get shot. It’s not a privilege to be treated with dignity. None of these are privileges. They are basic human rights to which every person on the planet is entitled, and they are basic human rights denied to vast numbers of people on the basis of not only race and class, but also disability, gender identity, sexuality, size, ethnicity, and religion.
When we talk about “privilege,” we talk about “giving up privilege,” and that’s when people with the “privilege” start getting defensive. When people go to that defensive place, I feel the exhaustion coming on, because if I have to keep beating against people’s defenses, I’m not going to be able to sustain the work. Beating against defenses doesn’t serve. The defenses just go up higher. Does it really help to keep using the same strategy?
If what we call “privilege” is really a set of basic human rights and the power to protect them, then no one with any sense or self-respect is going to give them up. And they shouldn’t. The point isn’t to give them up. The point is to make sure that other people get them. What if we started talking about the rank injustice of some people having more rights than others? What if I said that my race and my class enable me to fulfill the promise of my human rights, and that I have to use my resources, my time, my energy, and my life force to fight in solidarity with people whose rights are unprotected? At that point, the question of my losing anything goes right off the table, because the aim isn’t for me to lose my rights, but to use them to make sure that other people get what they deserve to have.
There is something deeply disturbing about a social justice framework that sees human rights as privileges and that sees the solution to inequity as one set of people giving up their human rights so that another set of people gets them. That’s basically the system we’re already in. It’s a system of a scarcity. It’s the same system of scarcity that makes people compete with each other at Wal-Mart for TV sets at Christmas. It’s the thinking perpetuated by our media- and commerce-soaked culture, in which there is never, ever enough for everyone.
That’s no way for human beings to think about human rights.
Much of the problem with a lot of privilege conversations is that they ultimately become shaming, because it is all about what we have and who we are by an accident of birth, and not about what we do. There are lots of dents that can be made in my social power– my disabilities make very big dents in it — but I still have power that I cannot lose. When people start talking about the “privilege” inhering in people by virtue of birth or social position — rather than talking about what people are doing with their birth and social position — shame enters the picture, and that shame is often immobilizing.
In social justice spaces, I have seen a kind of obsession with “privilege” among white and other social justice activists — a kind of distracting guilt about it that creates a lot of distortions. In fact, much of what I see in discussions about ”privilege” is deeply informed by a Christian paradigm in which proper belief is the most important thing, sin must be expiated, and we’re saved by virtue of the words coming out of our mouths, the thoughts happening in our brains, and the feelings going on in our hearts. As Andrea Smith notes in “The Problem with Privilege,” there is a confessional quality to many conversations about privilege, with the listener expected grant some form of absolution. As a non-Christian, I watch that paradigm in play and simply can’t participate, because it is almost entirely foreign to me. My culture is all about praxis. Belief can inform praxis, but it means nothing without it. I don’t come from a culture that believes in sin, or that believes that we’re fallen, or that believes that we need to feel shame for the world we’re born into, or that believes that confession and proper belief will save us.
It’s immobilizing and useless to feel shame for the system we’re born into. There is no shame in being born into a human body and a world we did not create, and we should feel no shame for that. But we should feel shame for sitting on our hands in such a system and doing nothing. We need to be listening to people tell us what we can actively do and we need to join up with them to do it.
The point is not to grok “privilege.” The point is to not to wrest human rights from each other as though that will create justice. The point is to do justice. I’d like to hear a whole lot more talk about how to do justice in a system overwhelming in its violence, its distortions, its lies, and its cruelty than I want to hear about “privilege.”
I just can’t go there anymore.
Facebook. “On ‘Privilege.’” https://www.facebook.com/notes/kiera-scriven/on-privilege/448172575236421. January 7, 2013. Accessed December 5, 2013.
Smith, Andrea. “The Problem with ‘Privilege.’” Andrea366. August 14, 2013. Accessed December 5, 2013. http://andrea366.wordpress.com/2013/08/14/the-problem-with-privilege-by-andrea-smith/.
© 2013 by Rachel Cohen-Rottenberg
For many years, I’ve labored under the illusion that oppressed people should be wiser, kinder, more just, and more empathetic than anyone else. As a Jew, I was taught early on that we have to fight for justice because we have known persecution. This teaching goes back thousands of years and finds its expression in the dictum in Torah that “You shall not wrong a stranger or oppress him, for you were strangers in the land of Egypt” (Exodus 22:21). I try to live by this dictum. It drives my work in a multitude of ways.
So the belief that Jews should “know better” than to engage in bigotry and ignore systemic injustice has been axiomatic for much of my life. Out of this belief, I’ve extended this ethical demand to all other oppressed groups: people of color should “know better” than to be homophobic; queer people should “know better” than to be ableist; disabled people should “know better” than to be racist.
Lately, though, I’ve begun to shift my perspective. This shift began during a discussion about the persecution of Africans in Israel. As happens so often, a discussion of Israeli government violence turned into an indictment of all Jews, with all kinds of anti-Semitic canards getting thrown around: Jews own the media, Jews haven’t learned from history, Jews think they’re better than everyone else, there is good reason that people are anti-Semitic because Jews fit the stereotypes, and on and on. The anti-Semitism was like several punches in the gut and brought up tremendous wells of pain and fear, but it was the repeated demand that we Jews “should know better” that I found impossible to answer.
I didn’t know what to say. In fact, I felt as though I really weren’t permitted to say anything at all — as though I had just been placed outside the conversation altogether. And I felt shame — despite the fact that I don’t live in Israel, have never visited Israel, have nothing to do with Israeli policy, and feel appalled by much of what goes on there.
I realized, for the first time, that it is extremely shaming to say to persecuted people “you should know better” – as though people in an oppressed group aren’t capable of all the same ignorance and bigotry and violence as non-oppressed people, and as though they have to be held to a higher standard. I’m becoming less and less enamored of the idea that it takes oppression to create empathy and a passion for justice. Given that dehumanization is at the core of all oppression, it makes no sense to me that oppression would automatically create greater empathy or a greater commitment to justice in anyone. After 2000 years of dehumanization, persecution, and near-genocide, are we Jews really supposed to be kinder and gentler than anyone else? After hundreds of years of systemic and violent racism, are people of color really supposed to be kinder and gentler than anyone else? After centuries of violence, segregation, and humiliation, are disabled people really supposed to be kinder and gentler than anyone else?
That’s not how human beings operate and yes, oppressed people are mere mortals, like everyone else. Pain is not a gentle teacher and nobility does not automatically emerge from suffering.
There is something about the “you should know better” standard that feels curiously oppressive. It’s as though non-oppressed people get a pass, because they haven’t learned what suffering is, but oppressed people are supposed to be nobler and better, because they have. This perspective ignores two basic truths about human life: a) all people suffer and b) it doesn’t take suffering to know that you shouldn’t spill blood or treat another human being unjustly.
What does it to take to do love and justice? It takes being in touch with one’s humanity. It’s a choice to do love and justice. Yes, we should use our suffering and put it in the service of humanity, but that is a choice open to all people equally. It is not simply the province of people who have suffered more than others. Telling dehumanized people that they should be more human than other human beings is simply unjust. It’s creating a standard that other people apparently don’t have to meet. And it ignores all of the pain and terror and anger and despair that drive the injustices we perpetrate on one another.
So to anyone to whom I have said, “But you should know better!” I deeply apologize. It is shaming. It is othering. It is giving power to a double standard that creates division. I am dismantling that standard in my own life and I will speak to it when I see it. More division is not what we need. Healing these divisions cannot happen when we continue to reinforce them. I will strive to do better.
© 2013 by Rachel Cohen-Rottenberg
[I originally posted this piece to my old Journeys with Autism blog in April of 2012. The subject of activism and disability came up in a conversation today with several other disabled people, so I'm reposting the piece here as a point of discussion.]
How do you define activism?
I’ve been chewing on this question for awhile. It’s come up for me lately in the context of my graduate course. We are being asked to talk about the social relevance of our work, with an eye to bringing together theory and practice.
I find myself balking at the dualism of theory and practice. Surely, at least in the case of disability rights, disability theory is essential to thinking about how to solve problems, change cultural assumptions that lead to discrimination, and enable people to heal internalized ableism. I’m not sure that, when it comes to oppression, there really is a useful distinction to be made between thought and practice; after all, analyzing and critiquing oppressive norms like racism and ableism is part and parcel of creating change. For myself, reading disability theory has enabled me to move through discriminatory situations with a great deal more consciousness about what is actually going on (i.e. that it isn’t about me and “my problem”), and to therefore advocate for myself more effectively. When I can do so, not only do I help myself, but I also serve notice to people that the next disabled person who comes in the door may very well be prepared to do the same.
Perhaps the real issue isn’t the difference between theory and practice, but audience. For example, if academics are writing theory and it never goes beyond other academics and the pages of academic journals, then it cannot have an impact on ordinary people who need new frameworks in which to operate. This is a significant problem in academia. Except for my current graduate program, which is interdisciplinary and therefore oriented toward problem-solving, my experience in the field of humanities has been to be fired up with passion and outrage about the injustices of the world, only to hit the hard brick wall of the institution, which provides few opportunities for any sort of real-world practice. In fact, it was the presence of that wall that drove me out of academia for 25 years.
But my question about what constitutes activism goes far beyond questions of theory and practice into the mode of activism itself. For me, writing is my primary mode of activism, because it’s the way in which I communicate most effectively. It’s not the activism of talking to my legislators or organizing protests. It’s a quieter activism.
It’s the activism of replying to emails from parents, who ask about sensory issues, or about how to interpret their kids’ behavior, or about why certain language hurts.
It’s the activism of running the Autism and Empathy site, smashing stereotypes, and giving a place to voices that are all-too-often silenced in the popular media, in autism organizations, and in the scientific community.
It’s the activism of reflecting on my life, on my reading, and on my experience in a way that speaks to people who are just finding out that others feel as they do.
It’s the activism of building bridges with parents by letting people know that just as I need respect for my feelings and my process, so I will give them respect for theirs.
It’s the activism of creating a safe space on my blog, in which people who have never known safe spaces can express themselves without fear of being attacked for their perspectives.
It’s the activism of lifting up my voice and speaking out against murder, and abuse, and cultural violence against disabled people.
There are so many of us who cannot talk with our legislators, or organize protests, or do so many of the things that we tend of think of as activism. I am beginning to realize that defining activism is those ways is much too narrow. Of course, all those things are important. But they are not the only way to make change, and defining activism in those ways is to give in to ableist notions of what sort of action is worthwhile and what sort is not.
The fact is that it’s all activism. Every single piece of it.
Every disabled person who has the courage to ask for the accommodations they need at school or in the workplace is an activist.
Every disabled person who comes out of the closet and says, “This is who I am,” is an activist.
Every disabled person who works to defends his or her psyche against a steady onslaught of devaluation and dehumanizing messages is an activist.
Every disabled person who shares the words of another disabled person, and thereby helps to create a network of mutual support and pride, is an activist.
How could it be otherwise, when simply being disabled and loving our lives is a radical act?
© 2013 by Rachel Cohen-Rottenberg
[Trigger warning: Shunning, social violence, F-bombs abounding]
I have been crying a great deal these days here in PTSD-land. My therapist warned me that once I started feeling all the pain in my body, the grief would not be far behind.
She was right. It’s here. And with it comes a tremendous amount of anger.
Fortunately, my mind and body seem to be focusing on one gut-twisting injustice at a time, which is a great relief from the freight train of memories that seemed to be running over me a couple of weeks ago. At the moment, everything that is emerging comes from what happened at the synagogue where my husband and I met.
Let’s go back to late 2001. Bob and I had fallen in love. I was still legally married but separated from my now-ex-husband. Bob’s late wife had passed eight months before. We had been friends during the period in which she was ill, and we continued to be friends after she died. Bob had been the spiritual leader at the synagogue for about three years, but he had been part of the community in a number of leadership positions for about 20 years. I had been part of the community for a year and a half. I had moved up there when I separated from my husband, thinking that I had people there who loved and supported me.
Hahahahahaha! What a fucking joke.
Fast forward to January of 2002. Bob tells the board of directors about our relationship.
Oh, hell. If I’d known what was about to happen, I’d have suggested that we move to another state. Or country. Or planet. I’m not sure how far would have been far enough from these people, but it would have to have been pretty fucking far.
The people on the board had known Bob for decades. These are people who had seen him raise his kids. These are people who had seen him go through the illness and death of his wife. These are people he had served during that time in a state of grief, fear, and exhaustion. These are the people who had known how difficult it had been when his wife died — how bereft he felt, how much despair he felt, how alone he felt, how starved he felt for companionship. He was a friend of all of these people, and they were allegedly his friends as well.
Would you like to hear how his “friends” reacted?
The first words out of anyone’s mouth at that board meeting were the following:
“Bob and Rachel need to break up, and Rachel needs to leave the community.”
Just take that in for a moment. If someone said something that atrocious about a friend, how would you respond? I’m assuming that there would be outrage, yes? If I’d been in any meeting where someone had made such a suggestion, you would not have been able to shut me up. And, yet this piece of shunning and social violence was met with silence from the rest of the board.
By the way, to the woman who made that suggestion? FUCK YOU.
And to all of our erstwhile friends who sat there in silence with their thumbs up their asses? FUCK YOU, TOO.
And then, of course, the ultimatum came: Either leave the woman you love or leave your job. Nice, eh? Ultimatums are always a healthy thing, aren’t they? ESPECIALLY AMONG FRIENDS.
(Oh, sorry, these weren’t really friends. That was just a long-standing illusion. Because friends don’t do that shit.)
By the way, to the people who made that ultimatum: FUCK YOU.
Of course, Bob resigned, because… well, love is somewhat more sustaining than a bunch of assholes trying to make you choose your job over it, amirite?
You would hope that would be the end of it, and that people would grow up and deal, but noooooooooooo. Watch the situation careen downhill:
1. I told my best friend in the congregation about Bob and me, thinking that she would be joyful and supportive. Her response was, “I don’t know how I feel about this,” and then proceeded to go on and on about what a problem it was. And over the next weeks, she came up with a number of wonderful suggestions, including the idea that Bob and I should not be allowed to be alone together, ever, and that I should seek therapy to deal with my anger over my life being ruthlessly fucked with.
Even Bob got pissed off, and Bob never gets pissed off.
Oh, and by the way, to the “friend” who said those things to me: FUCK YOU.
2. Friends of Bob’s called him to tell him how quickly I could get divorced so that everything would be all right.
About that breach of privacy and decency, guys: FUCK YOU.
3. People from the congregation called me and whined about how I was “taking their rabbi away from them.” Like the board’s ultimatum was MY problem?
By the way, to all the people who said that shit to me: FUCK YOU.
4. There was not one, not two, but THREE meetings at the synagogue to which people were invited to come and vent about my relationship with Bob. I fucking kid you not. THREE. My life became a reason for people to vent in a public meeting. In a synagogue. But not just in any synagogue. In the synagogue in which Bob and I had become friends and then fallen in love. In the synagogue where soulmates had found each other. THAT synagogue.
To all the people who made our love something to pissed on, shamed, and spat on: FUCK YOU.
5. Just a mere few months later, someone from the congregation became hostile with me and literally stood in front of my husband and blocked my path to him, as though I were an intruder. At a funeral. Yes. AT A FUNERAL.
To that person: FUCK YOU, sweetheart.
6. Bob and I went to restaurants, to the market, on walks, everywhere, and people were outright hostile to me. I don’t mean subtle stuff. I mean outright, nasty shit. And then I wrote to those people and said, “Please stop being hostile to me if you want to be in Bob’s life,” and what did they do? They called up Bob and yelled at him about me.
To those people: FUCK YOU.
7. Two people came up to Bob after a funeral and raged at him about the fact that they couldn’t be shitty to me and be his friend at the same time. Go figure.
To those people: FUCK YOU.
8. Several people from the congregation raged at Bob about how he had “betrayed” them. By falling in love with me. If they weren’t raging at him, they were talking his ear off in the supermarket about THEIR problems while ignoring my existence altogether. Did I mention the fact that we go to the supermarket to get food, not to listen to people’s fucking problems and have the delicious experience of one of us being shunned?
To all of those people: FUCK YOU.
9. Over time, Bob’s friends went away. Unless, of course, they needed something: someone to prepare their kids for a Bar Mitzvah, someone to initiate at a funeral, someone to fund a project. Then all of a sudden, Bob was THE MAN. OMG, there was NO ONE ELSE IN THE WORLD TO HELP. But other than that, they went good-bye. An entire community of people. People he had known for 20 years, and some for even longer. Gone. Gone. Gone. Gone. They didn’t give a flying fuck about his pain, my pain, our pain. They didn’t give a flying fuck about his joy, my joy, our joy. They didn’t give a flying fuck about him, about me, or about us.
To all of you who did that to us — and especially for doing that to my beautiful, kind, gentle, generous husband: FUCK YOU. FUCK YOU. FUCK YOU. FUCK YOU.
Because this is the part that grieves and angers me right now more than any other: the abandonment by people who were supposed to be my husband’s friends.
Bob and I have debriefed this for so many years, and what we’ve come to understand is this: At the time, the issue seemed to be about the fact that I wasn’t officially divorced yet. OMG! Imagine that! Falling in love before the ink on the divorce papers was dry! As though any one of those people wouldn’t have done the EXACT SAME THING.
Of course they would have, because that excuse for being nasty was utter bullshit. If that had been the only issue, people wouldn’t have kept this shit up for 11 years, to the point that we had to move to another coast. So it wasn’t that. The problem was that people wanted to be at the center of Bob’s emotional life, and they could not handle the fact that I had become the center of his emotional life. THEY COULD NOT HANDLE IT. They were like fucking children having a full scale collective meltdown. In their eyes, Bob’s only purpose was to serve them, not to need or to want or to do anything on his own behalf.
The wound from all of this is deep and wide and long. Watching my husband lose all of those people — people he thought were his friends, people he thought he could depend on, people he thought would be there for him — has gutted my faith in friendship altogether. I have some very good friends. The problem is that I never, ever rest easy in it anymore. I do not allow myself to. I do not ever, ever, ever allow myself to trust them or to feel reassured by their presence. Ever. I do not open myself up and expect anything from anyone, ask anything from anyone, or confide in anyone about anything. I back up, and I back up, and I back up.
Because what’s the point? Someday, people betray you. I watched an entire community of people do it. AN ENTIRE COMMUNITY. Of people who had been my husband’s friends for decades. If it had been just one or two people, okay. People come and people go. But an entire community? We’re talking scores of people here.
I need to get back to the place where friends coming and going is okay again. But I’m not there. I’m in this awful place of having just given up on friendship because my faith in other people has been so badly damaged. And the thing is, like anyone else, I need friendship. What these people did was like poisoning my food and then expecting me to enjoy a nice meal again without flinching. Friendship is basic to life. It’s like breathing or eating or sleeping. And what they did destroyed my faith in it.
I need a lot of holding through this. I needed it nearly 12 years ago and I still do. I don’t know how to get it, but this pain I carry, this isolation, this alienation — it’s too much. It’s gone on for way too long. I want my life back. And I want it back now.
The people at the synagogue owe us both a huge apology and about a ton of amends. Those things will never come, obviously. They will forever tell themselves the story that somehow Bob and I committed an injustice against them by falling in love. They will forever tell themselves the story that if it hadn’t been for me, all would be well. They will forever tell themselves the story that their community is just a wonderful, welcoming, open, progressive place and that we’re the ones with the problem.
With friends like that, all would never be well — not unless Bob were going to perpetually be in a situation in which he gave everything and expected nothing. And that’s never going to happen, not as long as I’m on the planet.
We expected better. We deserved better. And to all of your who did this to our lives: FUCK YOU. You ought to be ashamed.
© 2013 by Rachel Cohen-Rottenberg
[The graphic consists of a bingo card with the words “But You Don't Look Disabled!” at the top. The card consists of five rows of five boxes each. The text in each row consists of the following, from left to right:
Row 1: Well, that's the *main* thing.
And that's relevant WHY?
Before we continue, I'll need to see your medical credentials.
Can I borrow your x-ray vision goggles, please?
Seriously. NOT a compliment.
Row 2: Shhh! You'll blow my cover!
I'm not. I just play a disabled person on TV.
Awww. You're just trying to make me feel WORSE.
I'd love to agree, but I don't want to be wrong.
You really need to expand your definitions.
Row 3: Bwahahaha!
And you don't look completely tactless!
WTF? Free space WTF?
Thank you, but that is NOT helpful.
What does disabled look like?
Row 4: You're practicing medicine? Right here?
Well, I am. And things look like themselves, right?
I'm sorry. Do I know you?
Didn't you know? I'm just faking it for the social status.
And you don't look like a doctor?
Row 5: I'm actually an alien. But you can't see that, either.
What do you imagine I think of you right now?
And you don't look ignorant. But here we are!
I must have forgotten to wear my black triangle.
Crowd-sourced at https://www.facebook.com/DisabilityAnd
October 15, 2013]
© 2013 by Rachel Cohen-Rottenberg
I’ve been giving some thought to the work “broken” as applied to the human body. For years, I’ve reacted against the word. I’ve seen it as an implied comparison with “normal,” as a judgment, and as a form of devaluation. And it often is. But I’m not sure it has to be, and I’m having a change of heart about it.
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
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