Journeys with Autism

Archive for Judaism and Jewish Life

Responding to Old-Fashioned Anti-Semitism

April 21, 2011 Rachel Community, Empathy, Judaism and Jewish Life

I’ve lived a charmed life. I really have. I’ve encountered very little anti-Semitism directed at me personally. Of course, I take any anti-Semitism (and any other form of hatred) personally, but I’ve rarely found myself the object of it. The last time I did, I was at Princeton, and I was still in my teens.

Imagine my surprise, then, to find myself the target of an anti-Semitic slur on another blog — a blog I’ve always enjoyed. It came out of the blue, and the blog owner’s response to it was as offensive to me as the original slur. I’m writing about it partly because it’s an important issue, and partly because I want to find out whether others have the same level of feeling that I do about such things. So, I’d really appreciate it if you’d share your feelings about it.

Here’s the story: Another blogger wrote a short post about Simon Baron-Cohen, calling him out for his tired theories about how autistics lack empathy, and asking him to have some empathy for us. Of course, you all know that this issue is near and dear to my heart, so I posted a supportive comment that began “I totally love you,” agreeing with her on all points. Then, I went about my business.

A day later or so, I tuned in to see whether anyone else had weighed in on the issue and found the following comment from another reader:

“As Professor Grandin wrote in one of her recent books, as my Mom (from Mississippi) and Dad (from Georgia) were careful to point out to me when I was young, manners are very important, and even more so when dealing with strangers.

I am afraid that the patrimony of the person in Cambridge with the hyphenated surname might be starting to show a bit, there. Call that a blood libel if you like, Rachel. (Had you let my comment on your blog stand, and answered it, I don’t think I would be writing this one.)

Gentile White guys have feelings too, even though they might be somewhat autistic.”

My first response was “Whoa fuckin’ whoa! Did that comment say what I think it said?” That’s usually how I react when people say this sort of stuff: I question my own stellar reading comprehension. Obviously, I’d seen it all before, but in my shock, I went to disbelief.

The disbelief wore off pretty quickly, though, and then I got to work on a response. Before I share some of that response, let me unpack all the levels of the comment for you:

1. The commenter is assigning Simon Baron-Cohen’s theories of impaired autistic empathy to his being Jewish.

2. The commenter says he made this comment because he’s angry that a comment he wrote concerning my post about Sarah Palin, and her use of the term “blood libel,” did not appear on my blog, and I did not respond to it. I published the Palin post back in January. (January, people!) And I never saw the comment in question.

3. As many of you might know, the blood libel was a medieval anti-Semitic myth to the effect that Jews use the blood of Christian children to bake matzah for Passover. It’s been responsible for the persecution and murder of countless numbers of Jews throughout the centuries. In fact, there is evidence that it set the stage for the Holocaust. In other words, it’s not a term you throw around for fun.

Not only did this guy throw it around for fun, but he also threw it around for fun just before Passover. Oy.

4. By referring to Simon Baron-Cohen’s Jewish patrimony, he is referring to the second portion of his hyphenated name, which happens to be the name I share with the good doctor. I took the name Cohen and added it to my maiden name back in 1981, in memory of my grandparents, who had both died when I was a teenager, and who were singlehandedly responsible for the fact that I survived my childhood, both physically and emotionally. So the name Cohen has very deep emotional and spiritual resonance for me. Putting a stink on it is so not cool with me, you shouldn’t know.

Now, I am not a big fan of Simon Baron-Cohen’s work, as evidenced by my posts here, here, and here. So I’m not defending what the guy says. I’m defending his right — and mine — to be a Jew and be free from anti-Semitic slurs. (You all knew that, I know. It’s kind of obvious. But I figured that just in case your head is spinning, it wouldn’t hurt to be very clear.)

Okay, so. You know moi. I don’t let this kind of thing go without a response. It’s too important. It’s not just about disagreeing. It’s about the fact that saying this kind of thing is destructive, on so many levels, that I feel the need to speak up. So here’s how I responded, in part, to the commenter:

“If you’re referring to my Sarah Palin/blood libel post, I let all comments I saw come through on that one — some with editing (which included editing posts from the right and the left so as to keep the flames low). If your comment didn’t make it through, it’s because I didn’t see it. My spam filter is ridiculously inconsistent, and all kinds of valid stuff gets stuck there all the time. Usually, I catch it, but occasionally, I don’t. I’ve had long-time readers ask me where their comments went, and even though I’d looked carefully through the spam, I hadn’t caught them. It happens. I’m a human being.

In any case, your comment here that SBC’s Jewish patrimony aligns with his lack of manners is really beyond the pale. And to justify it by saying that it’s my error that caused you to engage in anti-Semitism is absolutely astonishing. You are responsible for what you say. You don’t get to indulge in an anti-Semitic barb and blame it on someone else. At least, not in my ethical universe.

My Jewish parents taught me better, and I’m damned proud of it. If any of my readers said something similar about conservative white guys, I would never publish it. Ever. Political disagreement? Yes. Attacking an entire group? No.

If you’d like to apologize for your anti-Semitic statement, fine. If you don’t, I wouldn’t let you post a thing on my blog, any more than I’d let someone who makes unapologetic slurs against conservative Christians onto my blog. And yes, I’ve gotten some, and no, they’ve never seen the light of day.”

At that point, I decided that, in the absence of an apology, I’d stop the interaction. I had had my say, and that was fine.

But the blog owner’s responses were less than helpful and, in certain ways, just as troubling as the original comment. First, she said that she was letting through the comment in the interests of free speech, but that she didn’t “want a race war” breaking out on her blog. On the free speech issue, fair enough. It’s her blog, and if she wants to let that stuff through, she gets to. But her comment about a race war breaking out implies that I was about to respond in kind — that is, that I’d attack the commenter for being a conservative white guy in the same way that he’d attacked me for a being a liberal Jewish woman. I decided to let it go, however, in the interest of seeing whether anyone would ante up, kick in, and become the least little bit outraged.

After I left my response to the original comment, this was the blog owner’s reply:

“I hope I have not upset anyone. I do not approve of racism and those other bad ‘isms’, and I try to avoid being a racist myself, but I do recognize that stereotypes can at times be a useful short-cut in decision making, including racial and ethnic stereotypes.”

Arghh! Where to start? My response:

1. I vehemently disagreed that racial and ethnic stereotypes can be useful.

2. I suggested that slurring Simon Baron-Cohen over being Jewish was not a useful short-cut to anything.

3. I came on the blog to be supportive, and ended up becoming the target of an anti-Semitic slur. I sure hoped that someone felt upset about that. I mean, besides me.

4. I’d be taking my comments and support elsewhere.

The response did not address any of my points at all. In part, it read:

“When I’m at the park do I avoid settling to read a book at the seats in the corner of the park where the Aboriginal people like to hang out? You bet I do! Do I pretend that I didn’t hear when indigenous people beg for money in the street, because I believe they probably waste money on booze and drugs? Damn right, I know what an indigenous person who is totally smashed looks like! Do I avoid discussing issues to do with Palestinian people with most people of a certain other ethnicity? You bet I do! Do I know that I’m risking being branded a Holocaust denier when I question the truth of a Nazi atrocity anecdote that a Jewish professor has written about lately in a number of different publications? Damn right I do! Did the qualified university-teaching surgeon that I asked about this anecdote reply that he thought it ‘Sounds like nonsense to me’? Yes indeed, he replied with those exact words! Do I believe that Google and the Australian Broadcasting Commission have both censored questioning of this very sus anecdote? Yes I do! Do I think that is an unjustified infringement of free speech and scientific enquiry? Yes I do!”

I don’t have the time at the moment to state the obvious on each of these points, but let’s just say that absolutely nothing in this paragraph has to do with ethnic stereotyping at all. Ethnic stereotyping, for those who don’t get the concept, has to do with saying “So-and-so did this highly objectionable thing, or so-and-so is about to do this highly objectionable thing, or so-and-so has this highly objectionable trait, because so-and-so is a member of [insert ethnic group here].” So, if I don’t give money to an African-American guy who happens to be drunk, because I know there’s a good chance that he’ll spend the money on getting more drunk, that is not ethnic stereotyping. If, however, I don’t give money to the guy because of the color of his skin, that’s racism. And if I say to myself, “He’s drunk because he’s black,” that’s ethnic stereotyping. (And, by the by, I’ve refused to give money to people who are drunk, but I’ve never refused on the basis of ethnicity, or assumed that they were drunk on the basis of ethnicity.)

And just to be clear: Stereotyping does not include making sensible, nuanced decisions to stay away from sensitive topics with individuals whom you know to be incapable of rational discussion. I’m not going to get into a long discussion with a Muslim who thinks that the blood libel is a reflection of reality, or a white guy who is convinced that the Holocaust did not happen, or a Jew who believes that all Muslims are terrorists, or a liberal who thinks that all conservative Christians hate women and want to kill abortion doctors. I’ll speak out against such idiocy, but I’m not going to have a useless discussion with someone whose mind is officially closed. That’s not called stereotyping. That’s called making the best use of my time on earth. I will, however, engage in debate with any reasonable Muslim, Jew, Christian, staunch conservative, bleeding-heart liberal, or anyone else, so long as that person keeps it civil, I have sufficient time and energy, and the subject interests me.

As for the blogger’s questioning an anecdote regarding a Nazi atrocity, suffice it to say that, having been the recipient of anti-Semitism on her blog, I didn’t feel that she’d exactly chosen the optimal moment to raise the issue. I have no idea what she’s talking about, and at the moment, I don’t care to know, because it’s an utter distraction from the question at hand. I mean, if any Muslim who posts to my blog were the recipient of an anti-Muslim slur that had somehow slipped in under my radar, I wouldn’t start talking about how difficult it is to participate as a Jew in a reasonable discussion on the Internet about the Israeli-Palestinian conflict. It is difficult, but that’s my difficulty, and not my reader’s problem. All of my attention would be focused on the fact that someone had come onto my blog in good faith and experienced an ethnic slur. We can have a discussion about the other issues later.

And, just so you all know, when I ran my Sarah Palin post in January, I spent a good deal of time editing comments from both a conservative Jewish woman and a liberal Muslim man, so that none of my Jewish or Muslim readers, of any political persuasion, would feel trashed on my blog. I do my best to practice what I preach.

It’s my belief that, as autistic people, we should be at the forefront of expressing outrage at any form of ethnic slurs or stereotyping. After all, we have to deal with stereotypes and slurs against us on a regular basis. In my view, it’s all equally destructive, and it’s all equally our responsibility, as human beings, to speak up against it.

57 comments

An Unexpected Connection

January 15, 2011 Rachel Judaism and Jewish Life

I just found out tonight that Gabrielle Giffords, the U.S. Representative who was the target of last Saturday’s assassination attempt, is my sixth cousin.

I hadn’t realized that there might be a familial connection until Wednesday night, when I was watching television and saw an interview with Lynn Paltrow, who was identified as Rep. Giffords’ second cousin. I have Paltrows in my family tree, including the actress, Gwyneth Paltrow, who is also my sixth cousin. (The original family name was Paltrovitch, which was later changed to Paltrowitz, and then Paltrow.) So tonight, I looked up “Giffords” in my family genealogy and, sure enough, I found out that Gabrielle Giffords’ grandmother was a Paltrow. Her great-great-grandfather, Simcha Paltrowitz, was a rabbi who was descended from an unbroken line of 32 generations of rabbis. According to family lore, he completely immersed himself in the study of Torah, although at one point, he also exchanged Hebrew lessons for English lessons with the brother of Harriet Beecher Stowe.

I don’t expect that I’ll ever get to meet Gabrielle Giffords (any more than I expect to meet Gwyneth Paltrow!), but finding out about this distant relation makes what happened in Tucson feel even closer to home. And so, I’ll end this short post with a quote about the awesome power of language, for good and for ill, from the German Jewish philologist Victor Klemperer, who wrote:

“Language does not simply write and think for me; it also increasingly dictates my feelings and governs my entire spiritual being the more unquestioningly and unconsciously I abandon myself to it. And what happens if the cultivated language is made up of poisonous elements or has been made the bearer of poisons? Words can be like tiny doses of arsenic: they are swallowed unnoticed, appear to have no effect, and then after a little time, the toxic reaction sets in after all.”

12 comments

Oy Vey, Sarah: An Honorary Jew, You’re Not

January 13, 2011 Rachel Judaism and Jewish Life

Up to now, I’ve had a policy about not wading into politics on my blog, unless we’re talking disability rights. I’m not much for political arguments. They take a lot of energy and, given how polarized we are in America, they’re seldom worth it. So I’ve limited myself to commenting on a couple of other people’s blogs about the violence in Tucson and how it came to happen.

But on Wednesday, along comes our illustrious Ms. Palin, who just can’t resist pouring gasoline on an open flame. And how does she do it? By invoking the “blood libel” and painting herself as the victim.

As a Jew, I’m beyond upset. I don’t even think there’s a word for how I feel. I’ve resisted writing about the tragedy in Arizona, but for Ms. Palin to invoke the blood libel, especially in the context of what happened in Tucson, is just so thoroughly insulting, ignorant, and counter-productive that I can’t keep silent.

For those of you not familiar with the blood libel, this particular piece of anti-Semitism, which originated in medieval Europe, consisted of the notion that Jewish people killed Christian children and used their blood to bake matzoh for Passover. It has resulted in the rape, torture, and murder of untold numbers of Jews over the course of many hundreds of years, and it’s a libel that is still alive and well today in various parts of the world. It has yet to expire under the weight of its own absurdity and, as such, it’s still a dangerous lie that incites real anti-Semitism, and real people still run the risk of suffering and dying because of it.

So, if historical memory isn’t enough of a reason to resist throwing the term around needlessly, the current facts on the ground probably are. Respect demands that we take care with the term.

But let’s get to what Ms. Palin actually said. In response to criticism that her violent rhetorical imagery contributed to the violence in Tucson, Ms. Palin quoth:

“Especially within hours of a tragedy unfolding, journalists and pundits should not manufacture a blood libel that serves only to incite the very hatred and violence that they purport to condemn. That is reprehensible.”

Okay. Let’s parse this one out, because it gets confusing if you just try to figure it all out in your head.

Ms. Palin asserts that she is the victim of a blood libel, which in her mind consists of people taking her to task for her rhetoric. Can you say “entirely false and fucked-up analogy”? I’m sorry, but people getting on your case over your rhetoric is not the same as being accused of killing Christian children and incorporating their blood into your holiday preparations. It’s not even close. It’s like comparing a bad day of hunting moose with being put on a train to Auschwitz.

I mean, really. Does this woman have any sensitivity at all?

It gets worse. Who are the purveyors of this “blood libel”? Ms. Palin calls out the “journalists and pundits” who have been talking ceaselessly about this issue since Saturday. But guess who called out Ms. Palin on the dangers of her rhetoric back in March of 2010, after the infamous map with the cross-hairs was published? None other than Rep. Giffords, the target of Saturday’s assassination attempt, who said:

“Sarah Palin has the crosshairs of a gun sight over our district and when people do that, they’ve gotta realize there are consequences to that action.”

Yup. Rep. Giffords called Ms. Palin on her rhetoric a long time ago. Does that make her guilty of a “blood libel,” too? Just because she can’t speak her mind right now doesn’t mean she isn’t being tainted by the analogy. I mean, does anyone think that, if she had the strength, she would say, “Oh, yeah, well, in March, I thought that violent political rhetoric had consequences, but now I see that I shouldn’t go around saying crazy things like that”?

Call me nuts, but I think the answer is “Duh. No way.” I think she’d stand by what she said back in March, right along with the pundits, the journalists, the bloggers, and anyone else with a shred of decency who, far from engaging in a “blood libel,” would like to see the violent rhetoric in this country replaced by intelligent discussion.

And did I mention that Rep. Giffords is Jewish? And that her aide who was killed, Gabe Zimmerman, was also Jewish? These are not just random facts. They’re central to the problem at hand. We’ve got Sarah Palin putting herself in the position of a Jewish victim of violence at exactly the same moment that we’ve got a Jewish man being buried and a Jewish woman fighting for her life after an assassination attempt. And Sarah Palin is comparing to a blood libel exactly the kind of talk that said Jewish woman engaged in last March.

So, in an absolutely stunning reversal of, well, reality, the logic of the “blood libel” analogy puts Sarah Palin (a non-Jew who is not a victim of violence) into the position of a persecuted Jew, and Rep. Giffords (a Jewish woman who is a victim of violence) squarely into the camp of the victimizers. And all this happens at a moment when the actual victims of last Saturday’s violence are either recovering in the hospital or being buried in the ground.

It boggles the mind.

Of course, there’s also the utter illogic of Ms. Palin saying that her words had absolutely nothing whatsoever to do with the violence in Tucson, but that people who say that words can indeed provoke bloodshed are themselves only serving to incite hatred and violence.

Which is it, Ms. Palin? Can words incite actual violence against actual people, or not? Was Rep. Giffords correct, or wasn’t she? You can’t say that your words could never, ever contribute to violence, and then turn around and say that other people’s words do—not unless there’s some sort of magic spell around your words that renders them merely annoying. Either none of us are responsible for a single word we say, or we all are.

I don’t know what to make of all of this. Is Sarah trying to become an honorary Jew? Is she unaware that becoming a Jew involves a long, complicated, years-long process of study and reflection? Does she need someone to tell her that you don’t become a Jew, honorary or otherwise, just because you decide that demands to tone down your rhetoric qualify as a form of persecution?

It’s all quite unbelievable.

37 comments

Happy Chanuka!

December 1, 2010 Rachel Happiness, Judaism and Jewish Life

Tonight is the first night of Chanuka, and I’ve been busy making latkes nearly all day long. We’ll be lighting the candles and stuffing ourselves silly in a little while, so I just want to leave a quick note to wish everyone who celebrates it a very happy Chanuka. And all my best to everyone for a safe and enjoyable holiday season!

14 comments

My Path to a Strong Sense of Self, Part 2

November 11, 2010 Rachel Diagnosis, Disabilities, Judaism and Jewish Life, Privilege, Spiritual Beliefs

One of the oddest results of my Asperger’s assessment was my lightning-fast transformation from “regular human being” to “collection of impairments.” I really hadn’t changed at all from the minute before my assessment to the minute after my assessment and yet, the way in which the world saw me began to change in significant ways. And because the world began to see me differently, I began to struggle with my sense of myself all over again.

I’m not sure that I can explain to someone who hasn’t been through it, or who hasn’t watched a loved one go through it, the devastating impact of the way that people see autistics. The insistence on looking at us through the lens of deficit is so extreme that we begin to see “deficit” as key to the definition of who we are. I have difficulties with eye contact: deficit. I can’t read nonverbal cues: deficit. I like routine: deficit. I can’t do small talk: deficit. I can’t lie: deficit. I can’t be indirect: deficit. I’m blunt: deficit. I depend upon my lists: deficit. I stim: deficit. And on. And on. And on.

How dare anyone define us in terms of what we can’t do? In my worst moments over the past two years, I’ve felt like a piece of swiss cheese, recognizable only by what isn’t there.

So, what did I do to find my way back to a sense of wholeness? I started looking at my strengths. The truly mind-bending result was that, once I had the autistic label, even my strengths started looking like deficits. I’m gifted at discerning patterns and organizing the objects of space: Those are just splinter skills. I can focus like a laser beam on any task: I am inflexible. I am good with the written word: I’m overcompensating for my difficulties with verbal communication. I have a keen eye for hypocrisy: I just don’t understand the usefulness of social forms. I value my non-conformity: I just don’t understand the usefulness of social forms. I’m very good at discussing subjects of mutual interest: I just don’t understand the usefulness of social forms. I express empathy by asking what a person needs from me and then doing it: I just don’t understand the usefulness of social forms. And on. And on. And on.

At some point, my healthy sense of outrage began kicking in and, in addition to reclaiming my strengths as actual strengths, thank you, I began reclaiming my so-called “deficits” as actual strengths, too. I have difficulties with eye contact because I am so sensitive to the information coming at me from a person’s eyes. I can’t read nonverbal cues because I am so sensitive to the fullness of a person’s energy. I like routine because I’m an organized person. I can’t do small talk because I’m sincere. I can’t lie because I’m ethical. I can’t be indirect because I’m honest. I’m blunt because life is short and there is much to be done. I make lists because I’m responsible and don’t ever want to forget to do anything that someone, somewhere, might be depending upon me to do. And I stim because, in case someone hasn’t noticed, the world is a pretty noisy, chaotic place full of highly irrational people, and I just need a little soothing. That’s a problem?

It’s a lot of work to have to continually fight this battle against the impact of the autism discourse. And what’s most exhausting is the fact that every time I fight this battle, I’m reminded that words like deficit, disorder, impairment, and disease permeate most discussions about us. That’s when I’m back to feeling that something is wrong with me, something that the literature calls a pervasive developmental disorder rather than simply a difference. Gee, thanks. Just when I thought I’d defeated the demon of pervasive wrongness, there it is again, and this time, it isn’t just my abuser doing the talking. Well-respected professionals, loony-toon wackos, and everyone in between can all agree on it.

Wonderful. But here’s the way I look at it: If all that someone can see are all the things we can’t do, and all the things we aren’t, rather than all the things we can do, and all the things we are, I’m not sure I can do a thing about it except to refuse to participate.

That’s when I return to the pivotal moment on my healing path: I have a pure soul. If there is one thing that is pervasive, that touches everything I do, it’s the spark of the Divine in me, and that spark is far more powerful and far more valuable and far more sacred than anything else. If all that someone can use to describe me is the language of deficit, disorder, and impairment, that’s the other person’s illusion, not mine. I don’t have to take it on, and I won’t. All I can do is to stay clear in my mind that a society that defines people by what they can’t do is a society with a pervasive problem, and the problem isn’t us.

32 comments

My Path to a Strong Sense of Self, Part 1

November 11, 2010 Rachel Childhood, Judaism and Jewish Life, Spiritual Beliefs

Spoiler and trigger warning: In this post, I talk about having survived childhood abuse.

For the most part, having survived abuse is not a topic that occupies my mind very much anymore. I still have post-traumatic stress issues that I will probably deal with for the rest of my life, but they don’t inhibit my ability to navigate. I work with them or I work around them, depending on the day, and being able to do so has become a source of power and self-confidence.

In this post, though, I’ll talk about the abuse. I’ll talk about it because the abuse itself once threatened my ability to have any sense of self at all, and because struggling with its legacy has been the key to having a secure sense of who I am.

I was emotionally abused throughout my childhood. I was also physically abused from the time I was 4 until I was 19, and sexually abused from the time I was 11 until I was 19. The abuse stopped after I fled the scene, moving three thousand miles away to California. I no longer have any relationship with anyone in my original family, as my blood relations are either in denial or simply don’t care.

I want to say outright that I don’t have any kind of hierarchy in my mind about which form of abuse is “worse,” because for me, the only important dividing line is the one that separates being safe from being unsafe. For a long while, ranking one kind of abuse as worse than another became an exercise in minimizing and controlling my pain, and it was a great relief to stop.

I finally gave myself permission to stop over twenty years ago, after sitting in a support group with a woman who was actively recovering memories of the most hideous abuse imaginable. Each of us got a session in which to tell our stories, and when this woman told hers, everyone else in the group responded with a variation of, “I feel like I don’t even have the right to be sitting here with you. My abuse wasn’t nearly as awful as yours.” Her mindful, compassionate, and altogether accurate answer was, “There is no such thing as better or worse when it comes to abuse. Once someone forces us to cross that line, we’re all in this together.”

One aspect of her struggle that we all shared was the visceral sense that the abuser had somehow taken up residence in our minds, our hearts, and even in the cells of our bodies. Particularly regarding the sexual abuse, I felt that I would never be able to rid myself of the way it pervaded my awareness of my own being. For a long time, I felt as though the abuse were circulating through my body and that with every beat of my heart, it was making me feel dirty and broken. How could I possibly heal? How could I possibly keep up with the messages of self-hatred that were spreading inside me? How could I tackle them quickly enough to defuse their power? Having been born with a very healthy sense of outrage, I was very, very angry that the ugly messages seemed to have become an inextricable part of me, and I rebelled against them even when I felt utterly done in by them.

As it turned out, rebelling against them helped me see that the idea that I had been dirtied and broken was an illusion—that it was a feeling, not a reality. I came to this understanding through teachings from my own culture about the purity of the human soul. I know that not every culture has these teachings, and I know that there are many paths to healing. This one just happens to be mine.

Judaism teaches that we are each born with a pure soul, that we each die with a pure soul, and that nothing that comes between our first breath and our last breath can change that. At the core of this concept is the belief that when we are created, a spark of the Divine enters us and becomes the soul. Because the Divine can never be broken or made incomplete, the soul within us shares that indestructibility and wholeness. And so, whatever is done to our bodies, our souls are perfectly resilient and incorruptible.

As I meditated on these things, I came to feel that much of the evil that was done to me consisted of making me forget that I am perfectly fine. I have struggles, yes, but I am not the same as what has happened to me, what has been done to me, and what has terrified me. At the core of my being, through all the pain and confusion that clouds my path, I am separate from the storm, and I am perfectly whole. In these teachings, I found my connection to the Divine, not as a self-other relationship, but as a deepening sense of immanence, awareness, and shared existence. I am no longer religious, as I once was; I seem to have little need for most religious ritual or study anymore. My husband says that I’ve internalized it all, and I think he’s right.

For many years, I thought I’d never again have to struggle against that sense of being compromised, broken, and wrong. Then, I got the Asperger’s diagnosis. After the initial rush of “Yay! That explains everything!” came the second wave of becoming profoundly aware of the language of impairment, disorder, deficit, and disease that permeates most conversations about autism.

That’s when I started to really believe in karma. I don’t mean the idea of karma that says you get punished for something you did in a past life. I mean the idea of karma that says that each person comes into this life to struggle with and learn about a core issue, and that we keep getting the same lessons over and over in order to strengthen our understanding. For me, as for a lot of people, the question I’ve had to grapple with all my life is “How do I maintain my power when everything around me keeps telling me that something is wrong with me?” If you’re autistic and want to live a happy life, I think that this question is key.

In my next post, I’ll talk more about how I’ve grappled with it.

6 comments

Reflections on Being Jewish and Autistic: Different Minorities, Same Critique

September 27, 2010 Rachel Ableism, Critiques of Autism Theories, Empathy, Judaism and Jewish Life, Marginalization, Modes of Thought, Myths about Autism, Privilege

For almost two years now, I’ve become increasingly aware of how other people regard autistics. As you all know, the news is not altogether good. As I’ve waded my way through all manner of error and nonsense, I’ve had the most familiar feeling, as though I had heard it all before. The other day, it finally occurred to me: I’ve encountered the same basic stereotypes and misinformation about Jewish people as I have about autistic people.

All minority people, to some extent, have to endure similar false charges, but the similarities between my experience of prejudice as a Jew and my experience of prejudice as an autist are striking. Here are some of the most damaging myths:

We don’t love properly. In the larger, mainly Christian culture in which I’ve lived my life, the view seems to be that the Jews of the “Old Testament” were all about strict justice, and that the Christians of the “New Testament” were all about love. (I put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)

The Jewish God, the critique goes, is only a God of judgment, a God of punishment, a God who lacks forgiveness, and we are just like our God: cold, judgmental, merciless. The Christian God, on the other hand, is a God of love and forgiveness. When I was growing up, without much of a Jewish education, I actually believed all of this. I believed it until I was in my late thirties, and I asked a rabbi whether there was anything in Judaism to help me heal my broken heart. His reply? “Yes. Our people brought the truth to the world that there is a God who loves us and cares about our lives.” I nearly fainted. When I began to study and practice Judaism in adulthood, I was startled to find that we are instructed to love our neighbors, to love our enemies, to love mercy, and to make right the wrongs of the world.

And what did I believe about autistic people until I found out that I actually am one? I believed that autistic people don’t have empathy, the very basis of loving relationships. The lack-of- empathy trope has been at the core of autism theory for a number of years, and it’s appalling how many people still believe it. Of course, they don’t appear to have met any of the autistic people I know, nor do they seem to have much empathy for the pain and suffering this canard causes autistic people on a daily basis.

We think terms of black and white. Now, the interesting thing about this particular myth is that it betrays some pretty black-and-white thinking on the part of the people who accuse us of black-and-white thinking. For example, when people say that Jews are only about justice, it’s justice of a kind that brooks no shades of gray. Christians, on the other hand, are said to be all about love, which encompasses many, many shades of gray. But the truth is that Jewish tradition has always been concerned with a concept called tzedakah, which is essentially an action that combines justice (righting a wrong) with love (easing and, ultimately, healing the suffering of other beings). We do not think in black and white about justice and love; in fact, we combine them. To split them apart is an example of black-and-white thinking at its best.

Now, consider the myth that autistics think in black and white, usually expressed as our being all about logic and systems. In fact, some researchers believe that we have Extremely Male Brains that are high on systemizing, while non-autistics have brains that are high on empathizing. And yet, when I look at my own life, and that of other autistic people, I often see a capacity for high levels of both systemizing and empathizing, and I see them working together. We don’t split them apart. Other people do, and then they tell us that we’re the ones with the black-and-white thinking. It’s enough to make you weep.

We are excessively logical. Many people believe that Judaism is all about “legalisms,” and that it does not concentrate on coming from the heart. This particular myth is very old and very intractable, in part because most people believe that Judaism begins and ends with the “Old Testament,” ignoring thousands of years of mysticism, story-telling, discussion, ritual, and practice that are all about opening one’s heart. I’m not saying that all Jews come from the heart, any more than all Christians come from the heart. I’m saying that Jewish culture has its own ways of combining head-thinking with heart-wisdom that are little known or understood by others.

Of course, autistics are constantly stereotyped as being overly logical—except when we’re stereotyped as being out of control. And yet, somehow, we manage to have friends, families, relationships, children, and ethical lives.

We insist upon being different. For a number of years, I wore garb that clearly identified me as Jewish. For awhile, I wore a yarmulke and tzitzis (ritual fringes) every day, all day. During another period, I only wore headscarves and dresses. I now dress in a thoroughly secular fashion. When I didn’t, I got all kinds of attitude about “setting myself apart.” Of course, I wasn’t setting myself apart. I was just being myself. And I wear what I wear now because I am just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Not surprisingly, I have gotten similar messages regarding my autistic sensitivities to all things sensory. I’m told that I’m “choosing” to be so sensitive, that I’m setting myself apart, when I’m really just being myself. And when my sensitivities are not as troubling, I’m also just being myself.

I grow. I change. I morph. I explore. I’m inconsistent. I’m human. Go figure.

Other people are normal, and we are abnormal. Many years ago, when my daughter was small, her father used to pick up one of her friends after school and bring him home. One December, on the way home, the young man said, “We celebrate Christmas at my house. We don’t celebrate Chanuka. We’re not like you. We’re normal.” My ex-husband took the long way home and patiently explained the concept of diversity to the young man until he got the picture.

And of course, we autists get stuck with the “abnormal” label all the time—more evidence of that dualistic, black-and-white thinking that “normal” people aren’t supposed to engage in.

We are all alike. In response to all the many myths surrounding Judaism and Jewish people, I did interfaith work for a number of years, teaching workshops in areas schools and churches. Some of the most common questions I got began with the words, “So what do Jews believe?”—as though we all believe the same thing! That was the moment I’d introduce the mantra of “You get two Jews in a room, you get three opinions.”

Likewise, it seems, people have an excessive need to see autistic people as being all alike. It usually expresses itself in terms of narrowing the definition of what autistic means. (I recently saw a YouTube video in which the mother of an autistic young man actually said that you can’t be autistic if you can speak. I was flabbergasted. ) At other times, this need to see us as alike expresses itself in conclusions by researchers that autistic people are a collection of deficits and impairments without any strengths at all. If we have strengths, they are usually called “splinter skills” (a term I despise, even though it’s got some cool alliteration and assonance going on).

Of course, we’re as varied as any other group. I’m not sure what kind of impairment, oops, I mean, neurological difference keeps people from seeing that variation. It might be interesting to do some genetic research on the matter.

We are not fully human. I first became aware that some people believe that Jews are not fully human when I was in Hebrew school and saw a piece of Nazi propaganda in which Jews were likened to vermin. I felt such pride in who I was that I just couldn’t believe my eyes. Who could really think that Jews weren’t people? Apparently, at certain times in history, a great many people.

I was reminded of this experience when I happened upon some writing by Dr. Ivar Lovaas, the psychologist who pioneered the treatment now known as Applied Behavioral Analysis. In discussing the basis of his treatment, he wrote of autistics in 1974:

“You see, you start pretty much from scratch when you work with an autistic child. You have a person in the physical sense—they have hair, a nose and a mouth—but they are not people in the psychological sense. One way to look at the job of helping autistic kids is to see it as a matter of constructing a person. You have the raw materials, but you have to build the person.”

I shudder to think of how many people still believe this kind of thing.

Of course, Jews, autistics, and members of any other minority group share similar experiences: we are vulnerable no matter how well we “pass” and live up to the standards of the larger culture, and we constantly have to fight against the appropriation of our own voices. Moreover, the solution to whatever problem we appear to pose consists of attempts to do at least one of the following: a) efface our differences to make us indistinguishable from others, b) demand at least a pro forma conversion to the dominant paradigm, which means that we can stim/rock back and forth in prayer/be ourselves, but only out of the public eye, or c) isolate us in ways both visible and invisible.

There are many, many autistic people who cannot do a “pro forma conversion,” who cannot “pass” as I do, and who have endured severe levels of bullying, assault, and isolation as a result. I shy away from the word Aspie and I use the word autistic to describe myself in order to make common cause with people across the spectrum (in the same way that I refer to myself as a Jew, not a denominational Jew, in order to make common cause with other Jews, no matter how differently they may think and practice, and how vehemently I may disagree with them). I will continue to do both. I have Asperger’s Syndrome, and that makes me autistic. I had Jewish parents, and that makes me a Jew. I may present differently from others in my group, but then again, so do trees and birds and rocks. Why should people be any less diverse than the whole of creation?

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How This Jewish Aspie Survived the Christmas Season

December 26, 2009 Rachel Belonging, Communication, Judaism and Jewish Life, Sensory Processing Issues, Spiritual Beliefs

Before I launch into the saga of how I made it through the past month in one piece, I wish to point out the following: I refer to the period between the last Thursday in November and the 25th day of December as the Christmas season. I refuse to call it the holiday season.

Why? Because I’m a foolish Aspie who believes in calling things by their proper names. I look around me at this time of year, and I see pretty lights and decorated trees. If I walk into a public place, turn on my radio, or watch TV, I hear Christmas carols. If I speak to another living soul, chances are that said living soul is either very, very excited or very, very stressed out about buying presents to put under the tree. What do any of these things have to do with Chanuka? Or Kwanzaa? Or the Buddha’s birthday? Or any other holiday on the face of the planet except Christmas? Nothing. Absolutely nothing.

Of course, many people celebrate Christmas as a secular holiday, concentrating on it as a solstice celebration. And certainly, as the Festival of Lights, Chanuka must have had its origins in the primal human need to shine a light in darkness. But my practicing Jewish mind cannot forget that Christmas isn’t simply a solstice celebration. For most people in the world, it’s a religious holiday, and while I can turn just about any piece of religious text into a metaphor, it’s very hard for me to be confronted by a life-size manger scene and symbolize it away. I experience the world so visually that these kinds of things have a visceral impact that I just can’t shake.

So, I like to call the season what it is. It’s Christmas time. For people who love Christmas, who have wonderful times with family, and who are not easily overwhelmed by crowds or by the excited, frenzied energy of other people, it’s a happy time. I respect that. I accept that others have customs and beliefs of their own, and I do my best not to complain during the Christmas season—at least, not outside my own house. Now that Christmas has passed, however, I want share how I deal with a time of year that I typically dread.

For most of my life, I’ve always identified my dread as that of a Jewish woman surrounded by the trappings of an entirely alien culture. It’s not as though I see my Jewishness reflected in the larger culture in July or anything, but at Christmas time, I cannot go anywhere and find respite from the goings on. To put it bluntly: Christmas is in my face wherever I go. There is no escaping it. I’ve even tried going on Jewish spiritual retreats in December, only to have people sing Hebrew prayers to the tune of Rudolf the Red-Nosed Reindeer. You haven’t lived till you’ve seen a guy in a tallis singing Adon Olam to the tune of a Christmas carol.

Now that I realize that I’m autistic, I’ve become aware that I’m not just feeling the alienation that springs from being a member of a religious and cultural minority. In the best of times, being autistic means that I feel as though I live in a foreign country and will never fully learn the language. At Christmas time, that feeling intensifies by several orders of magnitude. I don’t understand what all the excitement is about, and I can’t even begin to parse the social rules. When someone wishes me a “Merry Christmas,” what am I supposed to say? I almost reflexively say, “Same to you,” but inside, I’m thinking, “I don’t celebrate Christmas. Why do you think I do? Now I’ve just gone and pretended that I do, which is a lie.” I get caught between the social niceties and the truth. It happens the rest of the year, too, but at Christmas it happens just about all the time.

Unfortunately, the more generic “Happy Holidays” greeting does not remedy the situation. I know that people are trying to be ecumenical and embracing, but it doesn’t work. At least, it doesn’t work for me, especially during those years when Chanuka begins in early- to mid-December and is already over before I get wished a happy one. At those moments, I have to choose between saying, “Same to you” and “My holiday is already over.” Because I am a nice person, I usually just say, “Same to you,” but I’m basically lying. Again. I’m suggesting that I’m still happily celebrating Chanuka when all the latkes have already been eaten and all the menorahs have already been put away.

This year, I began to realize that being autistic gives me a bonafide, neurological reason for staying away from all the goings on associated with Christmas. At any other time of the year, I am very careful about where I go. In order to avoid sensory and empathic overload, I stay away from loud places. I stay away from crowds. I wear earplugs and a noise-blocking headset just to go grocery shopping. So going out during the Christmas season is absolutely out of the question. All the frenzied, stressed, excited energy out there would hit me like a tsunami, and I’d come home exhausted, disoriented, and sick. Why do that to myself? There is no good reason.

So, starting on Thanksgiving, I went on retreat—in my own house. Of course, I planned ahead. I made sure that I had sufficient food from my four major food groups: protein, winter vegetables, spelt flatbread, and dark chocolate. I cancelled my volunteer work, my ASL tutoring, my trips to the co-op, and every other outside activity except my therapy appointments. In fact, when I told my therapist how I was spending my time, he said, “What a great idea! If more of my clients said ‘If I haven’t bought it by Thanksgiving, it’s not getting bought,’ I would see a significant improvement in their moods and levels of functioning.” I felt supported.

Other than my weekly trips to the therapist, I stayed home and did all kinds of fun things. I did some quilting. I exercised on my stationary bike. I got all the materials ready for knitting Bob a sweater. I joined Facebook and found an astonishing number of childhood friends. I did some very satisfying genealogical research on Ancestry.com. I had some very nice contact with a cousin who sent me some wonderful old family pictures. I watched an episode of “Buffy the Vampire Slayer” with Ashlynne and several episodes of “The Wire” with Bob. I supported Bob’s week-long trip to California, and I enjoyed the solitude. A lot. Surprise!

Of course, I also celebrated Chanuka and Ashlynne’s 17th birthday. This year, Ashlynne got the use of my car, and I got the best present ever: two of my Facebook friends, who are not Jewish, wished me a happy Chanuka while it was still Chanuka! Do I have good judgment when it comes to friends, or what?

I had a good time. And I’m in a good mood. And after January 1st, I’m going to resume my regular activities.

I like this way of passing the Christmas season. I’m going to make it a tradition.

36 comments

Success!

April 10, 2009 Rachel Anxiety, Communication, Happiness, Judaism and Jewish Life, Marriage, Sensory Processing Issues, Social Gatherings, Weighted Blankets

Well, I’m amazed, but I made it through our Passover seders in one piece, and I’m feeling pretty good.

On Wednesday, we were able to get all the cleaning and other preparation done with time to spare, thanks in no small part to all you wonderful people who extended so much kindness and support. On Wednesday night, we had a mini-seder for our immediate family–my husband, my daughter, and myself. We had the ritual foods, said the blessings, and then spent a lot of time singing songs from the haggadah.

We decided on a mini-seder because, a few years back, we had two full seders at our house and decided never to do it again. Basically, the first one left us running on fumes for the second one. So this year, our homemade, doing-it-our-way first-night seder was perfect for us.

We had invited guests over for our second-night seder, so yesterday, we got the house prepared. I set the table, got out the haggadahs, put out the seder plates, and made the matzo ball soup. My daughter helped my husband chop up apples and walnuts for the charoset (a mixture of apples, walnuts, and grape juice that my daughter could eat 24/7), and my husband prepared the chicken.

At one point in the afternoon, I began feeling very apprehensive and irritable, and it occurred to me that I needed to clarify my role in the seder. So I told my husband that since singing is very soothing to me, I would like to lead all the singing, while he could take charge of navigating us through all the ritual.

It took some time for me to explain to him what I needed, and it took some time for him to say that he didn’t want me to blame him if I had a bad time. Yes, I’m sorry to say, we’ve been there before with the blame thing. We’d go to a social gathering, and I’d feel excluded and expect him to make everything all right. When he didn’t, I’d get upset with him. This time, I reassured him that however the evening went, I wouldn’t blame him and that I wasn’t interested in tapping into that pattern again. Been there, done that, enough already. He felt reassured.

I then made one of the best decisions of my life, ever. I took the two weighted blankets we have, brought them up to my loft, put them on the futon, and laid down under 30 pounds of beans and fleece. Then next thing I knew, it was an hour later, and my daughter was knocking on the door, telling me that it was 6:30 pm and that everyone had arrived. I had actually napped! Usually, the best I can do before a social event is to lie down, concentrate on my breathing, and try really hard not to get a migraine or a stomachache. The nap put me in such a calm and grounded mood that I felt ready to meet the world.

There were seven people in attendance: my husband, my daughter, my stepson Elijah, our friends Julia and Tristan, my daughter’s friend Claire, and myself. Because Julia used to be the music teacher at my daughter’s school, she knew my daughter and her friend, and since my stepson teaches at the school, she knew him as well. So everyone there was connected in some way to everyone else. That made for a very good feeling.

There was quite a bit of ritual before dinner, and everyone seemed very engaged. Sometimes at seders, people show up out of obligation, or take on the role of tourist and just watch the proceedings. It can be very tiring to host a seder under those circumstances. Luckily, at this seder, everyone was there by choice and ready to jump in. I took the lead on the singing, and I had a great time with it. Julia is an artist by profession, with a beautiful singing voice, and when she didn’t know a song, she picked up the melody quickly and added some gorgeous harmonies. The dinnertime conversation was very friendly, and then we finished with some really fun seder songs.

I had thought that I’d need to take some breaks during the evening to fend off sensory overload. In fact, I’d planned on it. I had everything set up so that I could go and snuggle under my weighted blanket and calm myself down when I needed to. As it turned out, I didn’t need to take a sensory break. Instead, I found that the sensory protections were built into the evening.

First of all, I decided to wear my weighted OT Vest. I felt a bit self-conscious about wearing a 4-pound vest, but it was a damned sight better than getting a migraine, so I went for it.

Second, the social gathering was held together by a traditional structure laid out in a book. I had forgotten how much any kind of ritual structure wards off sensory overload for me. It always makes me feel calm because I know where I’m going. For Passover, it’s the same routine, every year, and for an Aspie, that is a Very Good Thing.

Third, I had a job to do, leading the singing, so that gave me a significant focus. There aren’t just a few songs scattered throughout the evening. There is at least one song on nearly every page. That held my attention and kept it from getting too diffuse.

Finally, I realized that I could do a lot of work with my hands, which is also very grounding for me. There were a lot of plates to bring back to the kitchen after the first part of the ritual, so as to make room for dinner. Plus, because dinner came in several courses, there were different kinds of food to bring back and forth. I took on the role of making sure that everyone had what they needed, and then I sat down to have dinner, too. Being able to get up and walk around was a good sensory break.

As for the “otherness” factor, it was definitely there. I was aware that I wasn’t keeping up with what people were saying, and that over dinner, with more than one conversation going, it was hard for me to hear all the words. I felt so comfortable with being an oddball, though, that I stopped things every now and then with “What did you say?” or “I don’t understand” or something equally honest about how clueless I felt. No one seemed to give it a second thought, probably because I wasn’t trying extra hard to be “normal.” I was just feeling comfortable being the weird Aspie at the end of the table.

After lots of very fun and raucous singing, we finished a little after 11 pm. Instead of being wired and exhausted and up till the wee morning hours, as I am after most other social gatherings, I actually fell asleep by midnight.

I couldn’t have asked for a better time.

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