Some years ago, I took a two-year training course in Jewish shamanic healing. I came away understanding a great deal about the many ways in which ancient Jewish culture was similar to many other indigenous cultures, especially regarding the role of the healer, and the importance of ritual in maintaining the health of the individual and the society.
Ever since that training, I’ve become very interested in how various indigenous cultures view illness and healing, mainly as a way to understand our own culture’s attitudes toward sickness and health. So when I ran across the following in Robert Murphy’s The Body Silent, I began to think about the ways in which it illuminates the autism discourse:
“Among the Mundurucu, and many other South American Indian societies, the most serious threats to health are believed to arise from violations of the social order, specifically from the activities of malevolent and alienated individuals, people who, say the Mundurucu, ‘are angry at everybody.’ Most diseases, the Mundurucu believe, are caused by evil shamans who manufacture supernaturally charged objects, called caushi, that enter a person’s body and cause illness…
Just like the invisible malignant objects he manufactures, the Mundurucu sorcerer is thought to operate covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering. Killing the accused restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person. The good shaman brings back life and normal function to the body and community; the evil shaman creates death and disorder — which are really the same thing.” (Murphy, 30-32)
One of the images that struck me right away was that of an outside force entering the body and rendering the individual ill. In the mainstream discourse, autism is sometimes imagined to be the result of a foreign substance being introduced into the body by way of vaccines, environmental toxins, or food additives. At other times, as in the infamous Ransom Notes campaign, autism becomes the outside invader itself.
In both cases, the seemingly inevitable corollary is that autism is a condition separate from the person. If the autism were removed, the narrative goes, the formerly autistic person would be well, normal, and whole. Thus, despite the vast diversity of the autism spectrum, despite the dozens of possible genetic markers for autism, and despite the fact that autism is a complex neurological condition, most people speak of autism as though it were a single entity that could be safely excised.
But where our own culture diverges from the indigenous view is the degree to which the “cure” is focused wholly on changing the person, rather than the social context in which the person lives and breathes. In cure circles, there is very little talk about changing the disorder in society in order to heal the individual.
The only exception comes in the form of the vaccines-cause-autism contingent, whose members believe that keeping people from introducing vaccines into their children will stop the “autism epidemic.” Just as the Mundurucu view the sorcerer as a malevolent entity who operates “covertly, maintaining his everyday demeanor and mask of sociability while spreading disease and suffering,” many who believe that vaccines cause autism view the pharmaceutical companies, the vaccine manufacturers, and the federal government as co-conspirators in a plot to render the American public ill, all the while going about their business looking as respectable as can be.
Of course, the anti-vaccine contingent does not help anyone become better. In fact, they only introduce more illness into communities by lowering herd immunity through their anti-vaccination efforts. In trying to heal disorder, they only create more of it.
As for the rest? Those who believe that autism is caused by environmental agents, rather than by genetics, show little to no interest in stopping the alleged cause of the autism. If you believe that pesticides cause autism, shouldn’t you be working against the use of pesticides? If you believe that food additives cause autism, shouldn’t you be working against the use of food additives? And some people are. But far more people devote all of their attention to altering or curing the autistic person, despite the fact the autistic person, in this scenario, is simply the canary in the coal mine. It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane. In that kind of scenario, the human body becomes the source of the disorder, and no one need alter the larger environment.
I read a comment recently on another blog that spoke very directly to this idea. In writing of the necessity for a cure for autism, the commenter said:
“The world isn’t going to get any less bright, less loud, less crowded, or less dependent on the need to communicate in our children’s lifetimes no matter how much we may wish it; and no matter how wrong it is, funding for a generation of children needing lifetime assistance will not be forthcoming.”
I found this comment quite interesting, because it clarifies so succinctly the impact of social disorder on autistic people while eschewing the necessity for healing the disorder in the body politic. The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent. The commenter’s solution is to find a cure. He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.
I think it’s apparent to most of us who have reached mid-life that the world has become quite a bit more disordered than it was when we were children. I remember my father limiting our TV watching; these days, you can hardly go into a restaurant or a waiting room without a television on. I remember a world of books and LPs; these days, there are iPods, computers, and all manner of technology that keeps us bombarded by visual and auditory stimulation. I remember when you weren’t supposed to play your music too loudly, so as not to inconvenience other people; these days, I hear music blaring out of people’s homes and cars on a regular basis. I remember when you could actually read the credits after a movie because they went by slowly enough for the average human to parse; these days, the text on the screen flies by so quickly that you have to click the pause button just to read it. I remember when classrooms were orderly and quiet; these days, in far too many places, they are loud and chaotic.
All of these factors mean that those of us who flew under the radar 50 years ago could certainly never do so now. It’s not our autism that has changed. It’s the environment. And yet, very few people talk about the environment in any thorough-going way. Yes, there are special ed classrooms, and some autism-friendly movie events, but there is a huge difference between providing separate venues for autistic people and addressing the disorder in the larger society that renders us disabled. Clearly, not all the disabling features of autism can be solved by re-ordering the environment. As one autism mom said to me recently, no accommodations can keep the world from being one in which bees buzz, babies cry, and dogs run — all of which are very painful to her autistic son. But there is much in the environment that can be changed so as to render the world less aversive and disabling to autistic people.
Few people want to talk about that kind of change because, frankly, most people have the privilege of accepting society just as it is; and those who see the enormity of the problem feel powerless to change it. So, instead of the social order changing, it’s individuals who must change. From what I have experienced, putting this burden on the individual is a core feature of the mental health profession, which largely sees difficulties like depression and anxiety as personal problems rather than social ones. Very few therapists are willing to engage the question of the ways in which skyrocketing levels of depression and anxiety have to do with the cold, lonely, stressful, alienating nature of American society. Instead, the solution is almost always to talk it out and take a pill.
After many years in recovery as an abuse survivor, and now as a late-diagnosed autistic, I’ve come to realize that American culture thrives on this individual illness paradigm. Everything is a disorder in the individual. If you’re depressed because you’re disabled and feeling isolated, you have a mood disorder. I actually had my last therapist tell me so. I said to him something along the lines of, “Wait a minute. I’m dealing with a disability in mid-life, in a world that is set up to exclude me more often than not. How does that translate to a mood disorder? Aren’t I having a perfectly normal response to the gravity of the situation?” He just kept telling me that it was my problem.
In the final analysis, it’s the person diagnosed as “disordered” who ends up in the position of the Mundurucu sorcerer and becomes seen as the source of social disorder. Disabled children are considered a “drain” on the school system. Disabled adults are considered “a burden” on society. Autistic people are called unempathetic, rigid, black-and-white thinkers in a society in which most political discourse is inhuman, inflexible, and polarized. People with mental illness are objects of fear and derision. The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.
In the popular imagination, we disabled people end up not in the position of the victim of an evil sorcerer, but in the position of the evil sorcerer himself. In the minds of so many, to cure a disabled person — or to render the disabled person invisible — “restores the body politic, and at the same time purges the populace’s fears, envies, and secret hostilities, which have been projected onto his person.” The larger society becomes the good shaman, “who brings back life and normal function to the body and community.” The individuals labelled “ill” become the evil shaman, who “creates death and disorder.”
And yet, unsurprisingly, no one is healed. We simply end up creating a society of alienated individuals who, as the Mundurucu say, “are angry at everybody.”
© 2011 by Rachel Cohen-Rottenberg
“It’s as though, instead of working on better conditions to keep miners from dying of the methane poisoning that killed the canary, everyone involved decided to re-engineer the human body to tolerate high levels of methane.”
this might be my favourite sentence from this post.
I must point out how prevalent this attitude is, even in loving family and friends. Without a light shone on it, this way of seeing things gets into everybody. Like most such thinking, it suffers from a long-term thinking deficit. It speaks from sensationalism and the promotion either of profit and/or keeping things status quo.
Change can be difficult, and painful. Looking at most of human history, it’s not a surprise that so many look to ‘fixing’ the canary.
Yes, the hardest thing for people to do is to change. It’s not just we autistics who are aversive to it. In American society, this difficulty is compounded by the fact that we seem to have such a poor sense of ourselves as members of communities, with responsibilities to one another that override our individual preferences.
“The society we live in is not only very bright, very loud, very crowded, and very biased toward verbal communication; it is also a society in which humane, compassionate, lifetime care for severely autistic people is nonexistent.”
Humane, compassionate, lifetime care for most people is limited. Some people’s “lifetime care” is trips to the doctor and a tetanus vaccine, or some antibiotics. Childcare, to healtcare, to making sure that everything happens that nedds to happen to get food on someone’s plate. All of these are things that people struggle with today and our society does a poor job of providing. We, as a society actually can work together to make this work.
Cereus, you’re absolutely right. In Vermont, the proposed state budget will cut services to a wide range of people, including elderly people trying to stay in their homes. Vermont used to be a leader in the drive toward “aging in place.” It’s very worrisome to see people face the prospect of going into nursing homes because they can’t get help with food shopping or cooking. It’s outrageous.
“He has wholly given up on the idea of changing the world around him, and he puts the necessity for change squarely on the autistic individual.”
This reminds me of a conversation I had with a friend who I’d told about my diagnosis. She’d recently attended a conference on making workplaces friendlier for disabled people (she’s a science writer; her workplace is full of Aspies) in which it was pointed out that what’s better for disabled people is often actually better for everyone. Like, noise and light pollution aren’t just hard for us, their negative health effects on everyone are starting to be realized. Clear and concrete directives aren’t just better for autistic workers, they reduce confusion and inefficiency for everyone. Conference calls aren’t just painfully difficult for me because of auditory processing problems, they’re not really good for anyone. They make *everyone* on a team more anxious and snippy and just aren’t actually an effective way to collaborate.
So when people say “the world won’t change,” I have to say, first, why not? And second, that view isn’t held up by history. The world has changed (granted not always for the better). People throughout the history of this country have been deciding that they want a different kind of community and working to make it happen. Smoking used to be accepted everywhere; now it’s accepted almost nowhere in my city. London didn’t use to have a sewer system; people just dumped offal in the streets, and probably someone back then said “the world isn’t going to get less dirty and smelly.” Well, it did, when leaders understood the negative public health consequences for everyone. It takes will and effort and organization, but things do get changed, and to insist otherwise is just mental and moral laziness.
And where that view is really cruel to a child is in insisting that there is no place in the world for him or her, when the likelihood is that that isn’t true. Not to minimize the often vastly increased difficulty that disabled people may have in finding that place. But I was told over and over again as a child that I just couldn’t be accepted or valued or ever be able to earn a living being who I was, so it was important that I learn to fit in, and demeaned every time I suggested in response that maybe the rest of the world needed to have its priorities adjusted. So I started making plans to remove myself from society to the greatest degree possible, because I just couldn’t do what they said I would have to. And then I found that I wouldn’t have to do that, because I’d been lied to and there was in fact a niche for me. Of course the world is difficult, but it’s still far more diverse, accepting and eclectic than many people ever give themselves a chance to see. We have subcultures upon subcultures. We have midtown Manhattan and the Alaskan wilderness. It was my teachers who were horribly blinkered by their own limits–the world is not just a noisy, chaotic school in an upper middle-class suburb where complacence and conformity are the highest virtues, but they had no way of knowing that.
Thanks for a thought-provoking post, Rachel–I’ve probably got more to say but have to go get ready for work now.
All excellent points, chavisory. To say the world can’t change creates a self-fulfilling prophecy. If people give up, then the world definitely won’t change. Better to act as though progress is possible. It’s the only way that positive change happens.
“The list goes on and on, the prevailing mythology being that if all these people could simply be cured — or just plain disappear — normality would reign, fear would be banished, and all would be well in the body politic.”
When I disclose my autism, the reaction is the same–”But you seem so normal!” I’ve had over 40 years of living in this world and I can pass for fifteen or twenty minutes. I can socialized for a brief evening but I won’t be sleeping later that night. I will still be recovering from the excitement and stress of an outing. Being “normal” makes others happy and comfortable, but it’s hard for me. I am still trying to find my way, with much optimism.
Lori, I can definitely identify with what you say. I can seem quite normal, but then I have to spend a good deal of time recovering and taking care of myself. Using all the skills I’ve acquired along the way while taking care of myself is a delicate balance, but I’m getting better at it all the time.
In Greek and Shakespearean tragedy, the tragic hero’s flaw manifests itself as chaos in both the natural and social realms. The tragic hero must be purged- i.e. eliminated- so that order can be restored. This probably reflects something in our collective unconscious, and therefore why neurotypicals can’t abide autistics, depressives, the anxious, ADD, etc. If we stop seeing mental diversity as a tragic flaw, maybe the ills of society itself can be addressed. Just a thought.
This is fascinating, John. It’s the Greek/Shakespearean model that seems to be at work in our culture. To me, the only ways around it are to turn in the model for a better one, to redefine disability as something other than tragic, or both.
Some of the things I do now were done for me as a child–we had limits on TV and radio time, we were not allowed to stay out late and we had family chores. I do the same thing with my children and you’d swear I was killing them from the looks I get from mom’s at school when I tell them my children do NOT watch any more than 1/2 hour of TV/day. Most days==no tv!!! And I make them do chores?!? They look at me like I’m killing them!!! But yet I have civilized, well mannered (most of the time) kids. They have a decent respect for the dollar and know what a little bit of work is. They also know we love them deeply.
I wish the world would revert back a few years but it won’t. So now I equip them with the skills and give them help when it does get too loud, overwhelming or just too much.
I once read in one of my health care management books that the most difficult thing for a person to deal with is change. How true that is…
We raised our daughter the same way. Until she was 9, we never had cable TV; her experience of TV consisted of occasionally choosing to watch one of three channels with colored lines running down the middle. Then when I remarried, I moved in with my current husband, who had cable only because his late wife had needed some connection to the outside world when she became ill, and he had become attached to watching the news shows. But even then, we limited my daughter’s TV watching. And she always had chores and still has a very healthy respect for the value of a dollar. And yes, we were very much out of the mainstream on all these things.
So great to know that other people are raising their kids similarly!
[...] Disorder in Society, Disorder in Self appears here by permission. [...]
Rachel: you do raise some good points in this post. And if neurotypicals are complaining about how the world has gotten noisier, more stressful, faster-paced, and louder, what about those of us on the spectrum? Your observations about TV’s in restaurants (I hate them, I find them distracting), loud music blaring from cars, etc. are dead on.
And we are supposed to accept all of this? That’s what the disordered self kind of thought is suggesting.
And back to John’s comment: I hadn’t really put together that our society is a reflective of the idea of Greek and Shakespearean tragedy of purging the flawed individual, but now that he’s said it, this makes sense as to why our society keeps seeing certain states of being as flaws and why it insists on purging said flaws. To me, it’s linked to the idea of being suspicious of/persecuting/rejecting anyone who is different, and this expands out to religious/cultural/ethnic/etc. kinds of differences as well as addressing autistics, those with ADD/ADHD, bipolar disorder, etc. Some of our greatest minds, most valuable individuals, and most creative souls have had one of these states of being: Lewis Carroll (speculated to have Asperger’s), Leonardo daVinci (the debate rages on as to whether he had ADD or Asperger’s), etc. I realize that not everyone can be a Carroll or a daVinci but there is so much treasure in varying degrees inside us…and some of those gifts/talents/etc may be the result of those so-called “flaws” like autism, ADHD, etc. So to purge the “flaws” would be to lose the gifts.
I consider Asperger’s a double-edged sword. It has its gifts and its challenges. I am happy to live with both. I am not denying that it’s a struggle to live in a world mostly built for NT’s (and even that is questionable, as you document in your post).
You are correct. The disordered self thinking needs to stop.
-Nicole
Hi Nicole,
It’s true what you say: The “disordered self” idea flows through all kinds of categories, especially race, ethnicity, religion, sexual orientation, and sexual identity. There is an ideal of physical/intellectual/cultural/religious/personal “normality” that very few people in this world will ever meet. And yet, this ideal can exercise something akin to tyranny over our sense of ourselves and of one another. Whenever I see people discarding these ideals in favor of social, inclusive change, I feel great hope for this world.
This is a wonderful post. Quite thought provoking. I’ve recently made the same observations about our society, but this has lead me to question almost all psychiatric diagnoses.
I would like to point out that there are many of us who can not meet the demands this society places on us. For instance, we are told that we should keep up with the news, much of which is disturbing in the extreme. We are supposed to have a low response to this information. Anything else is evidence of an anxiety disorder, depression, or at least “oversensitivity.” A low level dissociative state, or a bit of psychopathy. is necessary to function optimally in our society. Dissociation and psychopathy are both “disorders,” but they are useful for life in today’s culture.
If I have a less useful disorder, it is my societal duty to have it treated, most often with drugs.
Opting out is not considered a healthy option.
Using the keeping up with news example again, I got rid of my television years ago. In the last year, I stopped reading the news on my computer. If an event is important enough that people start talking about it, then I might look it up on the Web. Though this is but one small example of my attempt to opt out of that which I find stressful (and unnecessary), I have found that many people find it “wrong.”
These people, if pressed, would prefer that those of us who decide to opt out, would medicate ourselves so that we would be able to function optimally in this crazy society. I’d prefer to function at my own pace and have as much control over my environment as possible.
I suggest that we there is no neurotypical or “normal,” and that every one of us needs to be more aware of how we engage with others and within this society, in order to live more sane and healthy lives without “treatment.”
Julie, I agree with you about opting out of constantly traumatizing oneself with distressing, horrifying, or just plain crazy-making stuff. I’ve stopped reading a lot of the “autism discourse” for just this reason. Do I really need to keep reminding myself of all the ignorant and dehumanizing things that people say? I don’t think so. I’ll speak my piece about the latest outrage, but I don’t need to keep feeding myself a daily dose of it.
I’m much, much happier now.