This is Not a Petitionary Prayer: Carving Out a Space for Self-Representation
August 19th, 2012 by Rachel Cohen-Rottenberg

Although I am not particularly religious anymore, one of the things that I have always loved about Jewish ritual is that it is not about petitioning God for what you want, but about impressing upon your own heart how you want to be. Because of the nature of language, which relies upon a speaking subject and a recipient of that speech, it’s nearly impossible to write a prayer as though it is not addressed to someone else. So in Jewish prayer, the language addresses itself to God, and we ask God for lovingkindness, for patience, for wisdom, for strength. But really, what we are doing is impressing upon our hearts the necessity of constantly going toward lovingkindness, toward patience, toward wisdom, toward strength, because they are already there, very close to us, and not across oceans and skies. The ritual creates a space apart from the noise and conflict of the world, apart from all of its claims for attention, apart from all of its distractions, so that we can remember who we are. By separating ourselves from the world, we find a way to enter it with greater dignity and integrity.

But as I said, I am no longer religious, and I do not participate in these rituals anymore. Their time in my life has largely passed. But I realize how much I still need ritual, still need that place apart, in order to reacquaint myself with whom I am.

Consider this piece such a ritual.

I have been writing about autism in particular, and disability rights in general, for nearly four years. During that time, I’ve struggled find my place in the autism community, the autistic community, and the larger disability rights community. And what I’ve found is that I’ve largely had to leave behind any sense of belonging in the autism and autistic communities, because it has become almost impossible to find a place in which I can simply exist as an individual without getting drawn into battles. The landscape is so fraught, the lines are drawn so clearly, the conflict is so intense, the level of rage is so high, that I find myself constantly in a position in which the substance of what I say, depending on where I say it, ends up putting me into camps that I’ve never acceded to being in.

What I have learned is that I have way too much faith in the power of my own authenticity. Up to now, I have assumed that as long as I was perfectly clear about my position, and perfectly clear about my intent, that I would not be seen as being in one camp against another, that people would understand that I am speaking for myself, and myself alone, and that I would be able to safely and freely cross lines and talk to anyone. But it seems almost impossible to exist as an independent entity without appearing to give aid and comfort to whomever someone else thinks is the enemy. If someone mentions me in support of their position, and the person who mentions me is in conflict with others, then all of a sudden, I am viewed as being in that person’s camp, whether or not I have serious disagreements with some of the person’s other positions. If I show up in a discussion and express the opinion that I believe that people of all neurologies and abilities deserve respect for who they are, then I become the enemy of people who tell me that I am simply disseminating a pre-approved ideological message and that I have no notion of the suffering of other people — when, in fact, no one approves my messages but me, and when, in fact, I live to critique ideologies of all shapes and sizes, and when, in fact, I intensely and intuitively recognize the suffering of other people as a nearly palpable presence.

I am not a member of any organization or movement. I am not a member of Autism Speaks, of the Autistic Self-Advocacy Network, or of the Autism Women’s Network, even though I know and respect people who work with all of those organizations. I will work with people who support those organizations if I feel that a particular cause, at a particular moment, is just. I am not a member of the neurodiversity movement or of the autistic civil rights movement, although I support both movements, work very hard for the broader cause of disability rights, and consider both of those movements part of that cause. I largely stay away from organizations and movements because I am most comfortable — and most effective — as an individual who resists these kinds of identifications. I will talk and work with anyone who treats me with respect, whether one person I am speaking to thinks the other person I am speaking to is the most contemptible person on the face of the earth. As long as people refrain from verbal attacks, I will talk with parents who thinks that disability is a curse, and I will talk with parents who think disability is a gift, and I will talk with parents who want their children cured, and I will talk with parents who celebrate their children as they are.

I don’t think of the landscape as a set of binary alternatives. I see it as a place of possibility and creative potential, even as I realize that it is also a virtual minefield. In this, it is really no different from any other landscape.

In the midst of this landscape, so fraught with pain and possibility, I am constantly being presented with a choice: do I base my work on rage or do I base it on love?

When I talk about rage, I am not talking about outrage. I’m talking about something far more elemental, and piercing, and consuming than that. I have experienced, when I was younger, that kind of rage. It was engendered by particular people who had done me particular, protracted, horrendous wrong. I no longer feel that rage toward them, nor toward anyone. I left those people behind long ago and, over the years, the pain of what they did has fused not with forgiveness — for there is no forgiving certain things — but with compassionate understanding for who they were. Coming to that understanding doesn’t make me an exceptional person in any way, because I didn’t do it for them. I did it for me.

So when I talk about love, I am not talking about smiling at people who have seriously harmed me and pretending that all is well, and I’m not talking about avoiding conflict, or anger, or outrage, or honest expressions of how I see or what I see. I’m talking about radical love for the dignity and humanity of every person, no matter what they’ve done or what ideologies they hold — a love that is perfectly compatible with utter and complete outrage at whatever they’ve done or whatever ideologies they hold. And that radical love begins with love for my own dignity and my own humanity, however flawed my words and actions might be at any given moment.

I do not see any common ground between basing the work on rage and basing it on love, though I’ve tried very, very hard to find it. I’ve been caught between the two for a very long time, feeling that love isn’t enough because the unjust suffering of the world deserves my rage, and feeling that rage is way too much, because one runs the risk of directing it at anything or anyone that remotely appears to be connected with unjust suffering. Rage at unjust suffering is very problematic, because we are all connected with unjust suffering, in one way or another. There is rarely an ethical choice that is clear and just, where no one suffers. In this society, we all countenance other people’s suffering, and we all ignore it to one degree or another, and we all benefit from it in one way or another. While I write this, on the other side of the world, someone’s child is dying who ought not to be dying; and yet I go on, as though that child does not exist. I’ve got mine, and this child has nothing, and that is not a stroke of luck or a sign of hard work, but the result of an unjust system from which I benefit. And were the roles reversed, I have no doubt that that child would be simply going through her life as well as she can, trying to ease suffering where she can ease it, while I languished unknown and her life made no difference to my pain at all.

So I don’t think I can rage at it all without raging at everyone, including myself. And if I go that way, then where is that clear space, apart from the noise of the world, in which I can come back to myself and go forward with the work?

A reminder to the reader: I am not telling you how to be. I am talking about how I want to be.

This is not a petitionary prayer. This is a ritual in which my own truth becomes impressed upon my own heart.

I have been caught in the zone between rage and love for so long, that I have not done the love in the way I want to. And I think this is the case because I have learned to see love as a cop-out — as a passive, feel-good way to stay out of the fray and anaesthetize myself to all of the pain of the world.

But now I realize something essential: Active love is the most painful place to be, and the most lonely, in a world of suffering. I think that my rage, when I was younger, was about joining in the suffering, because rage causes me suffering, and it makes me feel a part of others who suffer. At least there was some belonging there. But in a society shot through with extreme levels of verbal violence — in newspapers, political debates, online comment forums, and even, occasionally, the streets of my sleepy little town — basing my work on love makes me feel nearly irrelevant. I wonder to myself: How can love for the dignity and humanity of every person matter when the dignity and humanity of every person is under attack so constantly?

And the answer I find is that it matters because it’s radical love.

I am well aware that this post has the potential to be used in any number of ways. Some might use it to defend their positions against other people. Some might think I am just plain misguided. Some might relate to it fully. Some might not relate to it at all. I wish that I had control over how my words are interpreted and used, but I don’t, because that is the nature of putting words out into the world. In order to avoid misinterpretation and misuse, I’d have to be silent, and that I will never do.

I have learned that whatever people think of what I write, they are talking about their own experience. They cannot possibly be talking about me, because there are several degrees of separation between someone’s experience of what I write and who I actually am, inside my body, my mind, my soul, and my own experience of myself.

So if you love this post, you are having an experience of me. And if you hate this post, you are having an experience of me. If this post makes you feel that the world is a wonderful place, you are having an experience of me. And if this post engenders anger and frustration at all that I’m saying and all that I stand for, you are having an experience of me. That is your experience, and I respect your experience, but your experience is not who I am.

I write about my perspective in order to create my still place in the midst of the tragedies of life and to cast upon the waters some words that might help to ease injustice and suffering for someone, somewhere. That is why I write, and for no other reason. Each of us has our own agendas. This is mine. This is who I am.

© 2012 by Rachel Cohen-Rottenberg


13 Responses  
  • Ashlynne writes:
    August 19th, 20126:20 pmat

    This is a really incredible piece, Mom. I loved it a lot, and will probably reread it many times.

    • Rachel Cohen-Rottenberg writes:
      August 19th, 20126:58 pmat

      I’m really glad it spoke to you, Ash. Lots of changes in my thinking and in my heart these days… <3

  • adkyriolexy writes:
    August 20th, 201211:13 pmat

    My issue is not the same as yours. In some ways, you could say it’s the opposite. But I do very much feel the concerns you express with the autistic community and autistic self-identification. I have had very strong feelings recently of going back to identifying primarily as “psychiatric survivor” rather than “autistic.” I will always be autistic and will always care about, and be involved in, autism/neurodiversity issues, but there are divides I don’t want to end up on the wrong side of.

    • Rachel Cohen-Rottenberg writes:
      August 21st, 201210:15 pmat

      Yes, it’s the concern about ending up on the “wrong” side of the line that makes it difficult to navigate. This is one of the reasons that I identify as “disabled” rather than “autistic” now, even though, as you say, I will always be autistic and support autism/neurodiversity issues. I’m really more about crossing back and forth between lines, and understanding different kinds of experiences. From this perspective, cross-disability work seems to be a better fit for me, at least at this point.

  • Heather Clark writes:
    August 21st, 20126:42 amat

    I always have to wonder about those people who think love only inspires positive and happy feelings. They must have such a shallow view of it. A shallow feel of it. Love feels like everything to me, like work, like pain, like joy, like a perspective, like a religion, like an approach to life. I choose to approach Autism with love, and that notion has been twisted and turned into many dark things. But they can’t reach it. They don’t feel it. They could never take my love away.

    I love the new picture of YOU!

    I love your radical love!

    It matters a whole lot, and you can tell from the first comment written here, and I will tell you from my family; your love means a whole lot.

    • Rachel Cohen-Rottenberg writes:
      August 21st, 20129:55 pmat

      I’m so glad, Heather. Thank you!

  • Atomic Geography writes:
    August 23rd, 20122:28 pmat

    Fine essay.

    Buddha is not a deity, but there is prayer in Buddhism. “Impressing your heart what you want it to be” is a good description of Buddhist aspirational prayer. Mantras can be considered a sort of prayer that literally protects the mind and functions as the language equivalent of a good deed – it can be the bridge between one’s positive intention and one’s positive action. There is much of this sense in what you write here, although I’m sure there are differences.

    I have a sense of your rage/outrage distinction and find that I both am sympathetic and wary of it. Maybe in another post you could explore it more.

    • Rachel Cohen-Rottenberg writes:
      August 23rd, 201210:24 pmat

      I don’t know whether I can articulate the distinction any more clearly, but I will try… I remember, when I was younger, feeling rage as a powerful, consuming force. It’s been a long, long time since I’ve felt that. Outrage feels more like a powerful, consuming moral imperative. Perhaps love for humanity transmutes rage into outrage? I’m not sure. But it seems to me that outrage is based on love for humanity; there would be no reason to be outraged at injustice or human suffering without that love.

  • Belfast writes:
    August 23rd, 20122:31 pmat

    Rachel wrote:
    “I wish that I had control over how my words are interpreted and used, but I don’t, because that is the nature of putting words out into the world. In order to avoid misinterpretation and misuse, I’d have to be silent, and that I will never do.”

    That right there is the big risk (and the big reason why) I struggle with: expressing myself (be it speaking or writing) in public-including but not limited to online venues. Would that I were courageous enough to push past the fear more often.

    • Rachel Cohen-Rottenberg writes:
      August 23rd, 201210:17 pmat

      I think I’m very fortunate in that I have so many words in my head that they must come out in writing. I write because I have to; it’s almost a physical imperative. If I don’t get the words out, it’s as though I’m just stuck.

  • Amanda writes:
    August 27th, 20121:21 pmat

    Too sick to fully reply.

    But I feel closer to part of the DD community and the disability community than to the autistic community. The autistic community is too… twisted and slanted and pointed in directions other than love and compassion. And that’s also despite doing lots of work for it.

    • Rachel Cohen-Rottenberg writes:
      August 27th, 201210:35 pmat

      Thanks so much for your comment, Amanda. As always, it’s good to know that I’m not alone in feeling these things.

  • Jacob P. writes:
    October 7th, 20125:20 pmat

    I read the whole thing.

    One part of this is that it’s between mercy and justice. Should we all be condemned for all the wrongs we have done, or all forgiven? (rhetorical question) Because we all have done wrong, and hurt others in some way, haven’t we?

    One view is to not hate people but only there actions.
    Jesus had said, “Forgive them for they know not what they do.”

    I believe people should be made accountable for there actions. And that we have to learn to love rather then hate. If we hate all others for the injustices they have done, then like this post points out we will also have to hate ourselves.

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