Neurodiversity

Disorder in Society, Disorder in Self

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.”

Rachel Cohen-Rottenberg blogs at Journeys with Autism.

Disorder in Society, Disorder in Self appears here by permission.

Rachel Cohen-Rottenberg’s Memoir is The Uncharted Path.

[image via Flickr/Creative Commons]

related:  The Unbroken Spectrum: Projection

related:  Autism: Canary in the Coal Mine (thanks Gwen)

Rachel Cohen-Rottenberg on 05/27/11 in featured, Society | 2 Comments | Read More