Neurodiversity, Grief, and the Normal Minority, Part One

“The worlds created by the human imagination are far more coherent and structured than the real social systems in which we live, and the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.  We take these conventional views of our social system as matter-of-fact, true representations of social reality, but they are socially constructed realities, human artifices whose purpose is to perpetuate society, not clarify it.”

— Robert Murphy, The Body Silent, page 30

I’ve been having a discussion lately with an email correspondent who was mentored by Robert Murphy, and who is himself disabled.  He asked me about my feelings concerning the neurodiversity movement, and his questions gave me a chance to further understand the complicated nature of grief and disability.  Some of my thoughts in this piece come directly from my portion of our emails, and others reflect the places that my thinking has gone in the midst of our ongoing discussion.

I want to be clear that I agree with many of the core tenets of the neurodiversity movement, which I consider to be no different than the core tenets of the disability rights movement, or any other human rights movement — that all people deserve respect and safety, that all people have the right to be front-and-center in conversations that affect them, that personhood should not be defined by an arbitrary standard of normal, and that there are many ways of being, learning, thinking, and perceiving.  However, I no longer identify myself with the movement, in part because I saw how easily I was beginning to slip into polarizing positions that I now consider untenable — such as the absolute insistence that autism is so essential to the person that, by curing the autism, you want to get rid of the person.

I can understand that position; it very aptly describes how I feel about myself and the way in which autism is woven into the fabric of who I am.  I personally don’t wish to be cured; were you to take away the autism, I would be someone else, and I do not wish to be someone else.  What I wish for most fervently is to feel welcomed as an equal, just as I am.  However, these feelings derive from my personal experience.  There are a lot of different manifestations of autism; some people do not feel especially happy with being autistic, and some autistic people would like to be cured.  Would I prefer that all autistic people be happy just as they are?  Sure, but I don’t have to live in their bodies.  I just have to live in mine.

And then, of course, most able-bodied parents who hear an autism diagnosis begin grasping at straws about how to proceed, because nothing in life has prepared them for going down the road ahead of them.  When you combine the fear, uncertainty, doubt, and dread generated about disability in general with the fact that few able-bodied people understand the experience of disability at all, is it any surprise that most parents grasp at the “cure” straw at one time or another?

When you’ve got a parent in this position, responding with “cure the autism, destroy the person” is extremely counterproductive.  It only ends up sounding like an indictment.  Parents feel pushed up against the wall and criticized, so they stop listening at the very moment that they most need to hear from us.

Of course, there are people seeking a cure who take extreme positions, and who believe that autism is the worst scourge to hit mankind since the Black Death.  And there are people who lose themselves in their anger that life didn’t work out according to plan.  There is really no talking to people when they’re in that state of mind.

But a lot of people are on the fence about the cure issue, and they’d be open to a conversation if they felt that we respected where they are in their lives.

What’s most lacking in the conversation about a cure, from the neurodiversity perspective, is the acknowledgment that parents of autistic kids go through a grief process.  I have to admit that I feel a lot of discomfort when I hear parents talking about grieving their children’s autism; sometimes, I just want to yell, “Are you grieving me?  Because I don’t need your grief. I need your respect.”  But, whatever my feelings on the matter, it’s essential that the grief process be recognized and respected if we’re to have any kind of constructive conversation at all.

From what I’ve observed, the grief comes from three different sources.

The loss of the idealized normal child

This grief is largely about the parents.  I’m not saying that as a judgment at all; in fact, I understand it completely, and I’ve experienced my own version of it when looking at my idealized self.  The way that parents hold on to the imagined normal child derives directly from the fact that, in American society, being normal is the most important value.  The socially constructed idea of normal exercises a tremendous hold on the imagination.  Aspiring to be normal is more important than aspiring to be a great teacher, or a brilliant researcher, or a bringer of peace to a war-torn country.  In fact, it is considered to be the prerequisite to doing just about anything else.  And that is because anyone who is even minimally aware knows what normal looks like, understands that he or she is supposed to aspire to it and, at one time or another, believes that normal and natural are exactly the same thing.

Of course, they aren’t.  Normal is a social construct, first and foremost.  In every society, it’s a different creature.  In 21st-century America, normal looks something like this:

Walking is normal.

Speaking is normal.

Seeing is normal.

Hearing is normal.

Having white skin is normal.

Being a Christian is normal.

Being heterosexual is normal.

Socializing in large groups is normal.

Having an Anglo-Saxon surname is normal.

Celebrating Christmas is normal.

Speaking English is normal.

Having European ancestors is normal.

Being middle class is normal.

Being educated is normal.

Having children is normal.

Being happy is normal.

Believing in God is normal.

Of course, this list is far from exhaustive; after all, being normal is a very complex business.  But if you look carefully at even this very partial list, what becomes clear is that being normal is not normative.  Anyone with a characteristic not on that list falls outside the bounds of normal, to a greater or lesser degree.  Having several characteristics not on that list pushes one further toward the margins.  If you put together all of us who do not fulfill all the criteria, you get the majority of people on this planet.

But the illusion by which we live is that most people are normal.  This illusion is a prime example of Murphy’s assertion that “the mental constructs by which we make sense of society are only loosely related (sometimes inversely) to what is really going on.”  When it comes to the myth of normal, those words are especially apt.

And part of what’s “really going on” is that parents of autistic children find themselves dragged, often kicking and screaming, out of the land of normal — a terrain that they had formerly taken entirely for granted.  This phenomenon leads to the second source of grief.

Rachel Cohen-Rottenberg blogs at Journeys with Autism.

Neurodiversity, Grief, and the Normal Minority and is republished with permission.  Part two will appear here tomorrow.

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

[image via Flickr/Creative Commons]

on 06/9/11 in featured, Society | No Comments | Read More

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