“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.
Leaving behind one’s own normality
Having an autistic child means that an able-bodied parent can no longer lay claim to being normal. I don’t care if that autistic child grows up to win the Nobel Prize, marry the President’s daughter, and buy a retirement home in the Swiss Alps; the minute a parent gets that autism diagnosis, normal is over. All done. Kaput. Never to return.
You know those angels with the flaming swords, guarding the path to the garden of Eden? They’re the same ones standing between able-bodied autism parents and their formerly normal selves.
You hang out with marginalized people and, sooner or later, you get marginalized. Anyone who has ever been in a public school knows this to be the case. Parents, remember the kids you didn’t want to hang out with, the ones you avoided like the plague, the ones you secretly (or not so secretly) made fun of, the ones by whom you didn’t want to be tainted by association?
Now your kid is one of them — which makes you one of them.
This inconvenient truth is what leads people to scream their heads off about how it must be the vaccines that cause autism, or the environmental toxins, or anything other than genetics because — gah! — if autism is genetic, that must mean that you’re one of us.
I’ll let you in on a little secret: You are one of us. Bwahahaha! Welcome to our world.
Sometimes, I wonder whether parents exclude autistic people from the conversation about autism in an attempt to maintain the illusion of their own normality. Perhaps, in their heart of hearts, they want to believe that their autistic children will never grow up to be us — as wonderful as we are — so that the parents can somehow disassociate themselves from us and return to the grieved-for land of normal. I’m not sure, but it certainly seems that there is a disdain for autistic adults in the autism community that borders on the irrational. I’m not sure exactly where it all comes from, but I think that a desire to avoid being tainted for life by us is certainly part of it.
The fact is that, like it or not, autism parents have entered the condition of most people who live on this earth. Few of us are normal. In fact, the people who fit the criteria of normal are a very distinct minority, indeed. But for this minority, all kinds of accommodations, privileges, and services are available — a point that leads me to the third source of grief.
Feeling frightened about the autistic child’s future
My feeling is that grief is a natural part of the process of having a disabled child and, contrary to somewhat popular opinion, it’s not always about wanting a different child. It’s often about just being scared shitless on behalf of the one you have. You watch your kid getting bullied, you see the pain the child experiences from being made to feel apart, and you worry about whether your adult child will find a partner, have even a small circle of supportive friends, and be happy. And these fears are not unfounded. A great deal of the time, the unhappiness that we face is not caused by the autism itself, but by the bigotry and cruelty of other people.
As a parent, I see nothing wrong with grieving that your child is going to face prejudice and attempts at exclusion for his or her entire life. You’d have to be living in a fantasy world to think that a disabled person is going to avoid all that in society as presently constituted, and the question of the child’s happiness under those circumstances is crucial.
What any parent of any child wants is that doors open for the child, not close. And most people understand that being normal means that you have access to the best jobs, the best educational opportunities, and the widest range of social opportunities. Normal people get to apply to college and, if they get in, they just pay their money and show up. They don’t have to fill out several pages’ worth of information about the accommodations they need and hope like hell that those accommodations are deemed “reasonable” (by non-disabled people, no less!), so that they can go to the college they’ve worked so hard to get into.
No, normal people already have those accommodations provided for them, without even asking. It’s a wondrous thing.
And what happens when you don’t have those accommodations provided as a matter of course? An easy life, it isn’t. It’s natural to grieve that. Of course, the main thing is not to get stuck in the grief and turn your kid (and yourself) into a victim.
So what do we do?
Do we focus on a cure, do we focus on making autistic people “indistinguishable from peers,” or do we work to build a world in which all the people who fall outside the realm of normal have equal access and equal rights? If we set out to do more than one of these tasks, how do we apportion our time and attention?
I consider it vital that we not make autistic people hold all the responsibility for change. Certainly, there is nothing wrong with trying to help an autistic child communicate effectively and navigate the world, but doing so cannot be a substitute for fighting to change social and cultural attitudes about normality. And the reason is simple: We will never be normal, and idle dreams about elusive cures are a distraction from the work that needs doing.
I passed for normal, to a greater or lesser extent, for most of my life. I still can, in certain contexts. Does that mean that my problems are solved? No. Does it mean that I can walk through the world, assuming that I will be respected and included? No. My difference becomes apparent eventually and, given the wrong circumstances, immediately. Being married, having a child, earning a graduate degree, writing books, and owning a house — none of it changes the fact that the quality of my life is deeply affected by the attitudes I encounter regarding my difference, by the degree to which people accommodate it, and by the ways in which people exclude me on the basis of it. No amount of passing, and no amount of achievement, will ever change that.
Autism parents, do you not want to know this?
I have always known that I am different. Others have always known that I am different. At some very blessed and happy times in my life, other people have seen my difference as a very good thing. And at some very low and very unhappy times in my life, other people have found my difference something to be derided, shamed, even beaten out of me.
Over the course of my life, I’ve acquired skills and learned to adapt, but at my core, I’ve never really changed. I’ve always been autistic. My context changed — sometimes for the better, sometimes not — and those changes had a tremendous influence on whether I succeeded at work, in relationships, and with friends. They made the difference between being abled and being disabled. And the impact upon my self-esteem and self-respect was directly proportional to how much support and respect I received.
So, if you aim for apparent normality as a way to resolve your fears about your autistic child’s life, please be aware that you will not fully solve the problem. Yes, helping your child to navigate the world is crucial, but it can’t be the end of the story. Your child will always be different. Your child will always know that he or she is different — as will others. Your child will never blend completely. Accepting a socially constructed reality called normal, as though it is available to your child means, to borrow Murphy’s words, being complicit in one of the “human artifices whose purpose is to perpetuate society, not clarify it.”
Perpetuating the status quo will not help anyone who has left the land of normal. Clarifying the status quo and fighting to change it means creating a world in which many millions of people — including your child — will finally take their place in the full light of human dignity.
© 2011 by Rachel Cohen-Rottenberg
