Tag Archives: myths and misconceptions
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010. Her last guest post for FWD was “I Do Not Suffer From Autism.”
In writing this piece, I in no way wish to imply that my approach is the only approach, that having a religion is better than having no religion, or that Judaism is right and that other paths are wrong. As long as people act consciously and ethically, I really don’t care what they believe, or whether they avoid religion like the plague. I have been involved in social justice work on behalf of all people from a progressive Jewish perspective for much of my life, because that is the culture in which I find myself at home and because it provides me with a useful framework for action. I abhor proselytizing and fundamentalism of any variety; I reject violence, no matter who carries it out; and I support a just, two-state solution in Israel/Palestine, may it be in our lifetimes.
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put the names of the books in quotation marks because I don’t see one as being old and outmoded and the other as having superseded it; I see them both as valid traditions in their own right.)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?
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
Rachel Cohen-Rottenberg is a wife, mother, writer, editor, artist, photographer, and leader of the Vermont Chapter of the Autistic Self Advocacy Network (ASAN). She blogs at Journeys with Autism, and her latest book, The Uncharted Path: My Journey with Late-Diagnosed Autism, was published in July of 2010.
I do not suffer from autism.
I suffer when someone calls my way of being a disorder.
I suffer when others invest time and money to prevent people like me from being born.
I suffer when anyone suggests that I might recover or be cured.
I suffer when others feel sorry for me or for the family I have created.
I suffer when I fear that people will consider me broken.
I suffer when my being autistic scares people away.
I suffer when others try to silence me.
I suffer when people suggest that I do not have all the same feelings they do.
I suffer because I must describe my way of being by referring to a medical diagnosis.
I suffer because I live in a society that does not celebrate difference.
I suffer because I live in a culture that does not cultivate sensitivity.
I suffer because I live in an environment that values appearance over substance.
I suffer because I live within a social order that calculates human worth based on productivity and conformity.
I suffer because I live in a world that does not honor the gifts that autism brings me.
I suffer because I have learned to apologize for who I am.
But make no mistake: I do not suffer from autism. I do not suffer from who I am.
[Interested in guest posting for FWD? Please see our Guest Posting page for more information!]
Terry Goodkind’s Sword of Truth series, recommended to me by The Guy, my partner of several years now, whom I thought loved me, seemed innocuous enough. I thought it a simple fantasy series woven with a love story (“woven” here should read more like a nice cudgel to the head), which I was looking for. I thought it would be a nice epic fantasy, like Kushiel’s Dart, or something to sate my need for a good run of fantasy novels.
I however, didn’t heed Anna’s warning, when she asked me whywhyWHY would someone who loves me recommend a book series to me where a chicken is written in as EVIL personified (this is actually a simplification of the storyline, but it is true, nonetheless…), and as it turns out I think Anna may love me more. Who knows. Maybe I was hooked by the way the first two books ended with just the most convenient and precious heterocentric endings ever (there is one brief nod in the fourth book to homosexuality that seems it could be positive, but then it ends sadly, and seven books later there is no happy ending for this character).
The Sword of Truth series, however, does have many good qualities. It has several well written female characters whom I fell in love with, but, as I will write more about at my home blog, all seem to be written to be smitten with and to be in the service of the central protagonist, Richard Cypher/Rahl. They simply fall all over themselves to serve him, to love him, and to swear their lives to protect him with everything they have. Even if they were once evil or if they have tendencies to be evil (it’s just their way, you see, some women can’t help it), they somehow over come it because his presence is enough to ignite a spark to make them want to fight for their own lives him. I mean his cause.
But the Sword of Truth series isn’t just an innocent fantasy series. It isn’t even a series filled with tropes about women characters that I love that happens to beat me upside the head with forbidden romance and a love forbidden to procreate. It is a cautionary tale that warns of the evils of allowing communism to take over your life. This strange story of caring for your fellow man is bent into a monolithic monster of a machination that kills everything it touches. It simply asserts that you must live in misery for that is the only way that everyone can possibly meet the needs of every human evil, and makes the horrible and incorrect logical leap that religion is somehow tied to it, that this life is meaningless and that goodness can only be obtained in the hereafter. I can’t say I disagree with the atheistic themes, but really, a horse can only be beaten so many times before I glaze over and gloss over entire pages of exposition and soliloquy.
To be righteous in this world that Mr. Goodkind has created you must be willing and — key word alert here — able to fight for your own life and protect it with everything you have, up to and including killing those who would take it from you. With sword, with your bare hands, with magic if you are … gifted.
Yes, “gifted”. Being born with the ability to use and be touched by magic is considered a gift, which is not an uncommon theme in fantasy fiction and pop culture, but Goodkind takes it a step further, it seems to me. It is almost as though magic is another sense, an ability above and beyond that makes up for any other sense you may lack. Because if there is one thing that is all but lacking from this world that Mr. Goodkind has created, it is disability on the side of the bringers of good.
Even Adie, the “bone woman” (who oddly enough, having the speech pattern “I be” in the books*, is depicted as a non-white woman in the television series equivalent Legend of the Seeker even though that is now how she is described, but she is All Exotic! with Bones!), who had her vision stripped from her in her youth by a group of anti-magic zealots known as The Blood of the Fold by pouring bleach in her eyes, has learned to see. Her “gift” has enabled her to see. In fact, her vision, as is noted many times in the books, is often better than those who must rely on their ‘non-gifted’ vision.
I am going to drop the quotes from here on out, because it is getting tedious, and I think you get the point.
Adie never had to learn how to access the world around her. She never had to learn how to stumble around and feel with her other senses. She did, however, have to learn how to see with her magic, which made up for the vision which wasn’t there. This gave her the ability to be worthy, in the world that Goodkind created, to be able to fight for her life, and be allowed to live. People should just try harder, as Adie did. If you can’t get by in life, it is your own fault, and you are not contributing properly to the artwork that is the nobility of man!
You can understand why I was having a problem here.
Normally with pop-culture and fiction, there aren’t really absolutes, and I admit that there are multiple ways of interpreting things, but Goodkind has done a unique thing here: he has created a world of moral absolutes. This is right and this other things is wrong. What Richard Rahl (the protagonist) believes is right, and what he is against is wrong. There is clear good and evil, and the lines are rarely blurred. This use of a gift of magic allows people who otherwise have flaws to remain on the correct side of Richards moral compass. Richard, and Goodkind himself, could be described as Objectivists, which I think would clear up my frustrations. It should have set off alarms as soon as the philosophy lessons started to seep into my fantasy novel. Except OOPS! Mr. Goodkind says he is not a fantasy writer, merely a fiction writer he says (fuck you, fans!), so I have been wrong all along…
But Adie couldn’t be useful to the story, she couldn’t be the powerful and badass sorceress that she is depicted as being if she was indeed blind, amirite? Because if she was wasting all of her time trying to adapt to a world that was refusing to make accommodations for her she wouldn’t be able to fight for her individual life, or for Richard’s noble cause of laissez faire Capitalism freedom for all mankind (and I guess some of those womenfolk too).
The only time that her magical eyesight didn’t work was when she was faced with a woman, Jennsen, who was born without even a spark of the gift, called a “pristinely ungifted” person. She can not be touched by or interact with magic. Turns out, that Jennsen is Richard’s half sister, and her being ungifted is the bi-product of Richard’s gift. There can be only one! She has to be ungifted so that he can be gifted. It is very complicated, and there is an entire race of people on whom Adie’s magical eyesight doesn’t work! And Jennsen had to help Richard rally them up, because they were blind (oh the tropes and ableist language abound!) to evil, and their pacifist asses wouldn’t raise a finger to fight for their artwork of individual self interest.
I was just frustrated beyond all belief.
So if you want a nice stew of -ism and fuckery passed off as philosophy and disguised with characters that you will certainly love, I recommend Goodkind’s Sword of Truth series. All eleven (soon to be twelve!) books of it!
EDIT: 01 Sept: I forgot a couple of links when I finished this post. Apologies!
Not many of you would know this but I had my first experience with acupuncture the other day.
I went to see a physical medicine doctor about a TENS unit because my current dose of my narcotic pain medication for breakthrough migraine and body pain is no longer sufficiently covering the amount of breakthrough pain I am having, and as a personal preference I have decided to seek alternative methods before I agree to increase the current dosage (which honestly, I am already trying to squeak by with as little as possible because the hospital here is so stingy with it, and I am trying to be Model Patient). The physical medicine doctor, for whom I would make up a name for him, but in all honesty, I have, currently, three Dr. Kims and two Dr. Lees so I don’t feel the need to do so, agreed quickly to get me set up with the TENS unit. I just have to come in to see the physical therapist to try it out, and they will order it for me. In the week between, Dr. Kim asked if I would like to try acupuncture.
Now, I have a very high level of phobia surrounding needles, and the thought of acupuncture, being pins, doesn’t stray too far from that for me. This is not the first time I have been asked to try acupuncture. But Dr. Kim wasn’t pushy. He offered it casually, mentioned that he is licensed and certified, and that he could start right away, if I wanted to. He smiled in an understanding manner when I explained that I was afraid that any benefit might be canceled out by my anxiety.
He spent ten minutes calmly explaining to me a slightly different method, more commonly known to military doctors as “Battlefield Acupuncture”, where pins go in my ears and stay for a week or so, at its most basic form. I agreed to try it, not wanting to have another doctor click their tongue at me for not trying everything and not wanting to give anyone a chance to call me a drug seeker. But when I say “pins” I tell you that these tiny things felt like thumb tacks piercing my non-pierced ears, five in each ear with two in the inner part (ten total). I was instructed to sleep in a supine position, which would screw up my sleep, since I am a side sleeper. But he told me to keep them as long as I could stand them.
I lasted two nights of thrashing around. And The Guy told me he was proud of me for sticking it out that long. I felt like I was in agony the whole time. I could think of nothing else.
I have seen noticed that the military is leaning towards pushing acupuncture on troops, which I think is odd, since getting other “alternative” care (things as innocuous as chiropractic care) and getting it covered by our insurance is like getting a root canal. I believe that more options is better, but it was the framing of these alternatives that bothered me.
The first time I had heard that acupuncture was being offered to troops was in an AFN commercial. AFN is the military’s overseas entertainment network, both on television and radio. They offer commercial free programming for military families. But they have AFN sponsored spots and informercials. One of those was for acupuncture, celebrating the troops who were asking for it, choosing to treat their pain in “responsible ways”, which clearly spoke to me that people who received no help from such methods (such as I discovered I did not), or where it was not available, or who chose not to, were irresponsible for choosing narcotic pain relief methods.
And that just doesn’t sit well with me. I will defend against screeds like this writer at Forbes, who are just simply dismissive of methods that have helped actual people, because the author is deliberately dismissing their experiences. That would be like someone telling me that all chiropractors are quacks because they don’t ever help anyone, when I know for a fact that the last doctor to give me actual, long-term relief that didn’t require daily narcotic care was a chiropractor specially trained in treating patients with fibromyalgia. At the same time, however, I know that suggesting that because I use certain medication to manage my pain doesn’t make me less responsible. I am pretty sure that managing my pain makes me responsible for my pain. Certain people may not like how I am choosing to do it, but it is still up to me how I choose to do so, making it my responsibility. No one but me gets to make a moral judgment on that.
It isn’t widely available. I am fortunate, were I willing to give it another go (and possibly, I might be talked into the more traditional style). Acupuncture is widely practiced in Korea, so it is readily available. But not every military medical center is so well equipped. In fact, I think your chances of getting chiropractic care are better. They’ve hit the big ones, like Walter Reed, and it seems Fort Hood, which has a high deployment rate, has one as well. I am unclear how many other branch facilities are joining…but that is hardly accessible with so many needing it. I am also unclear if this is widely available to family members, or if this is another perk to my medical record still being messed up because of Dick Cheney’s privacy law funhouse or whatever it was that has left me listed as still active duty and of a higher rank than I actually was (and yet, with my hyphenated post-married name, which I never used while active duty…).
Often times it is being coupled with Chaplain care and yoga, which isn’t going to help everyone, and you shouldn’t be forced into one in order to get the other. Nothing adds to my needle phobia like you praying for my soul. And sometimes people with chronic pain shouldn’t be forced into certain types of exercise, which really is the Military Way, I know, but they need to understand that it can do more harm than good.
It’s a big Catch-22 of hope. I hope to see a broadening of options opened up for the masses of troops coming back from battle hurting from a decade of two wars (why, yes, I do say that a lot), or even as a way to help troops still in combat zones who have to stay and carry on. I hate to see it being set up as another way to shame people into using it if they aren’t ready to be the shiny happy Model Patient.