Archive for May 27, 2011

Guest Post Series: Widening the Disability Perspective

May 27, 2011 Rachel Guest Posts

This month’s contribution to our Widening the Disability Perspective series come from Melanie, who blogs about dreams, family life, and ice skating at I Will Skate. I’m so glad that she has decided to share her story with us.

Changing Perspectives by Melanie

Thank you, Rachel, for the honour of guest posting on your blog. I am originally from England; I thought I’d clarify that to explain my quirky spellings and phrases!

My post is a meditation on the theme of widening the disability perspective.

What is perspective? It’s something that we use every single day. Anyone who can reason uses perspective, and the fascinating thing about it, to me, is that everyone’s perspective is unique, even that of identical twins. What makes it even more intriguing is that most humans are stubborn about change, but anyone’s perspective can change just like that. I know that mine did.

This post is about my youngest child, my son, who will be four years old in July. His pregnancy name was Oat, so on my blog, he is referred to as Oatie. Oatie has di-plegic cerebral palsy, which is CP mainly in his legs.

Oatie and I often feel like we’re “frauds” in the world of disability. Why? Can he walk the same distance unaided as another non-CP child of his age? No. Could he walk last year? No. So, why?

Well, if someone were to look at Oatie, no one would think, at first glance, that he’s disabled. I describe CP as akin to a condition resulting from a stroke, but in the womb or shortly after birth. Most of the time CP “happens” while in the womb.

You see, the funny thing was that I naively thought that, because I would have children while I was young, I would have less chance of having a child with a “birth defect.” I was super healthy and fit. I was triathlete fit, but not extreme. I ate what I liked, had never been on a diet, had never smoked, and only drank in moderation at special occasions.

After an uneventful fourth pregnancy, I had Oatie. He came out suddenly at 37 weeks and, aside from his placenta being diseased, he looked “normal” and was my best feeder. There seemed no cause for concern at all. My eldest, who had been born eight weeks premature, walked independently just one year after his due date. My daughter, with whom I’d had a textbook normal pregnancy, didn’t walk until she was almost two and is now the youngest junior figure skater our club has ever had. So when Oatie was cruising furniture at two but not letting go, I was concerned, but two doctors said that I was worrying about nothing. My husband and I decided that as soon as it got near to Oatie being two and a half, we weren’t taking no for an answer. We were getting a referral. The pediatrician we ultimately saw diagnosed Oatie with CP on a foot reflex test when he was two and a half.

Wham! That was when my perspective changed. I suddenly went from a relatively carefree mum of three, to a mum of a child whose path wouldn’t follow the “norm.” One minute, my main concern was what to cook for dinner, and the next minute, I was wondering whether Oatie ever had a chance of leading an independent life.

You might be throwing things at your screen, right now. OMG! How could she be so ignorant of the possibilities? But it’s not until you’ve experienced things in life that you move into that inner circle.

I wasn’t ignorant or narrow minded. In England, I had been an ethnic minority. I was a Girl Guide, and I’m still involved in the Scouting movement today. I had raised money for all sorts of charities and traveled around many parts of the world. I believe that, in our junior school class, we had a child with CP, but being as accepting as we were, we never asked him what was “wrong” with him. He was a kid, we were kids, and no one cared if he dragged one of his legs. He was just part of the class like the rest of us.

But my perspective then was so different from what it is now. I didn’t realise then that people with CP or any other types of disability could be highly intelligent. I thought that a lot of “birth defects” were from poor diet and substance abuse. I thought only of the extreme cases of CP. Before I had kids, I thought that if I found out during a routine pregnancy scan that my child were disabled, I would have an abortion.

Well, after knowing Oatie, I SO wouldn’t.

I’m not saying that raising a child who is mentally super bright but has difficulties verbally and physically expressing himself isn’t hard or heart-breaking at times. It is. But Oatie has the purest soul and is the most determined person I’ve met in a long while. He is someone who will fall down and not even wonder, “Should I carry on?” Giving up is not an option and, in the blink of an eye, he’s trying all over again. He is so loving, so intelligent, and so funny. I feel privileged that I get to witness his journey in life.

Why am I telling you all this? Well, I’m an opened-minded type of person, really, and I know that if you’re reading this, you’re probably open-minded, too. But be honest with yourself. What was your perspective before you experienced your own disability, or before you became a caregiver, a parent, a sibling, or a friend of someone in the world of disability? How has your perspective changed?

My perspective is so different now.

Oatie is three years old, and he has already been subjected to some horrible social encounters. We’ve encountered the disdain of people frowning on me parking in the disabled bay, even with a blue badge. Some days, Oatie just wants to walk, and his therapy doesn’t recommend an actual walker, so he has my hands to hold as his walker. What’s wrong with that? Why do people think you have to be old to be disabled?

Stroller skating — what Oatie refers to as “buggy skating” – means sitting in his pushchair while one of us pushes him around on the ice. When Oatie was only two, he was shouted at by two rink employees and asked to leave the ice. Yes, I stood our ground and showed them the rules, but they apologised only after I phoned the duty manager. Oatie, who was not able to construct full sentences at that stage, understood their meaning fully, burst into tears, and said “Oatie no skate.” And even though we said that they were wrong and that he could, he pointed at the men and said “No! No!”

He has been bullied at preschool. He’s in a French preschool that serves a minority community in Alberta and, what got me was — a minority, picking on another minority! Oatie was deemed dangerous to others because, after 15 minutes of repeated bullying and derogatory behavior, he reacted. He had kids saying, “Hello? Are you in there?” He had kids snatching and throwing the toys he was playing with. He had kids saying he was a baby because he couldn’t walk. And before you say that they’re just kids, please know that the parents weren’t much better.

Well, only after many hours of argument and discussion did the other parents back down in a public display of shame. Oatie had five families who took a stand with him, and stood shoulder to shoulder with us and defended him. We managed to resolve all of it, and he’s now thriving at preschool. He is as fluent in French as he is in English, though he finds French easier to pronounce!

Even air travel has been a struggle. Oatie’s therapy is ABR (Advanced Bio-mechanical Rehabilitation), and the headquarters is in Montreal. Last March, before we started ABR, Oatie couldn’t walk or stand in open space. He could hardly stand even holding my hands, and he didn’t hold on, so imagine holding a floppy sack of sand, and not being able to put it down, while you need to get your wallet out, put your coat on, and open a stroller. I worked for a major worldwide airline, so air travel is like hopping on a bus to me, but even then, oh my, what a “physically impaired” person experiences traveling is something that an able-bodied person just doesn’t understand. Next time you go on a plane, have a look at the toilet, and think “If I were disabled…?” Exactly!

I took Oatie, by myself, to Montreal. I worked at check-in ground staff, so the whole airport scene was “my thing,” but going through security with a child who couldn’t walk was needlessly difficult. They removed his shoes — which, to Oatie, means that you have given up on him walking, so you’ve taken his shoes away. Once I managed to get him on the plane, I saw the seat and thought, “Is that comfy for someone with CP? No, it isn’t.” I had to wedge my coat behind him so he didn’t scream in pain.

And what about when they don’t bring your stroller or wheels to the aircraft side? I requested a wheelchair when we landed, and nope. There was no one to greet us. People look to see what’s “wrong” with Oatie, treat him like you could “catch” something, and WALK ON! There was one person on the whole aircraft who helped me. He was an off-duty soldier. This guy on leave to visit his mum was the only person who helped me out of over 100 people. He was so nice that he helped us off the plane. As soon as he saw that Oatie’s wheels weren’t there, he helped me right from the aircraft side, pulling our bags off the belt and taking us to the taxi rank. He even gave me his local barracks number to say that if we were stuck, in trouble, or needed anything, he’d send a tank over, as he knew that Oatie loved cars!

I think the biggest thing I have done, apart from Oatie’s ABR therapy, is not to pity him. Would you want pity? I challenge him, as I know that’s what he wants. Like his coat, he couldn’t take it off. It was almost unrealistic for him to take it off. He cried for a few minutes, saying, “You do it,” but then, he had a go and almost got it off. Now, he can take it off in a minute and is so proud of himself. Time for the next challenge, please.

Oatie can now walk 20 feet unaided, even carrying an object or a lunch bag. He can stand in open space, turn in open space, and sit on an airline seat without support. He can climb in and out of his car seat, take off his shoes and coat, feed himself, and mix a scratch cake. And he has started to read.

I see so many other mums who all look over at Oatie, and it’s written all over their faces: They’re SO glad it’s not them. I’ve heard people say, “How on earth can you DO IT?” and “Could you imagine having a disabled child? It would be awful.” I’ve even had people say to me, “They would be better dead.”

Yes, my perspective has changed. Meeting and knowing Oatie has changed me. In my mind, he isn’t disabled. It’s his dream to ice skate — and he will, whether it will be from the comfort of his stroller, or standing on the ice, who knows? But if anyone has the determination to do it, it will be him for sure. Just because he’s physically restricted, he’s not the disabled one. His mind is open, and pure, and wanting to engage life to its fullest. He’s not thinking typically three-year-old stuff about painting a cat. He wants to take on the world. He’s determined to walk independently. And, in all the months of bullying, not once did he NOT want to go to school. He knew that if he wanted to go to school, he’d have to endure the bullying until we managed to stop it.

It’s us, the so-called able-bodied –– we’re the disabled ones for not seeing clearly. We’re the ones whose perspective on physically or mentally “impaired” people needs to change. We have blinkers on, and it’s time that, one by one, we take the blinkers off and review our perspectives.

 

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Disorder in Society, Disorder in Self

May 23, 2011 Rachel Communication, Community, Disabilities, Doctors

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

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Neurodiversity, Grief, and the Normal Minority

May 18, 2011 Rachel Ableism, Community, Disabilities, Friendship, Loneliness, Marginalization, Modes of Thought, Neurodiversity, Privilege

“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

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Autism, Disability, and the Obligation to Get Well

May 11, 2011 Rachel Ableism, Diagnosis, Disabilities, Doctors, Marginalization, Self-Advocacy

I’ve recently begun reading Robert Murphy’s The Body Silent, one of the great books on the social and cultural context of disability. Murphy, a professor of anthropology at Columbia, became a quadriplegic in his fifties as the result of a benign tumor on his spinal cord. He wrote The Body Silent from the perspective of an anthropologist observing himself as a disabled person in the context of late 20th-century America.

His writing immediately spoke to me, in part because I’ve lived my life from the perspective of an anthropologist in a foreign culture, and in part because I recognize so many of my own experiences in his words. I am not very far into the book, but what I’ve read so far has sent my thinking in all kinds of new directions. I am being careful not to read too much at a time without articulating my thoughts on it; the book is so rich that I could lose track of all its implications if I didn’t pause to reflect.

Among the many passages that I’ve found powerful is the following, which describes the social role of a person who becomes ill:

“A person’s ordinary social roles — mother, father, lawyer, baker, student, and so forth — all become temporarily suspended when he or she falls ill. The individual becomes a ‘sick person,’ which relieves him or her of some or all of the ordinary obligations, depending on the severity of the illness.

The suspension of his other duties does not mean that the person playing the sick role has none at all. Quite the contrary; he is saddled with one big obligation: He must make every effort to get well again. In our own doctor-ridden culture, this means that he must seek medical advice; he must take his medicine and follow the doctor’s orders. This expectation mandates the proper role of the sick as one of passivity. The sick person is excused from work or school, household duties are suspended or at least limited, and connubial relations may be put on ice. But in return, he must devote full time to getting better.” (Murphy, 19)

The temporary suspension of numerous social roles in favor of a single imperative to “get well” is a trap that is well-known to many of us. Sometimes, this suspension of other obligations is necessary and welcome. For instance, when I had surgery to remove a degenerative disk in my neck a few years ago, I spent several weeks recovering my strength before I was able to get back to “normal.” And I well remember the feeling that my only role was to heal. At the time, I felt great comfort in knowing that others would take care of business while I recovered.

But the situation becomes much more complicated and troubling when a person moves beyond a short-term illness into a chronic condition. A couple of years ago, I went through a particularly low period with being autistic. During my 50 years of ignorance about my condition, I had pushed myself unmercifully — physically, psychologically, and emotionally — to the point of burnout. At the same time, I had been prescribed benzodiazepines, medication that was wreaking complete havoc with my sensory and emotional life. For awhile, I needed assistance with basic tasks, such as food shopping, housecleaning, and cooking. It was painfully difficult to ask for this help, and my self-esteem suffered significantly.

Two years later, I take much better care of myself. I have adapted to my disability, I have gotten off the benzodiazepines, and I have healed from the burnout. As a result, I no longer need such assistance. But the legacy of having once required it has cast a pall over my life that I have never completely dispelled.

Until now, I’d never known why. I’m beginning to understand, though.

With a condition such as autism, Down Syndrome, or multiple sclerosis, there is no “getting well” in the conventional sense. There can be therapies, accommodations, and the amelioration of certain symptoms, but there is no pill, no surgery, and no treatment that will remove the condition and render the person “normal.” Having any of these conditions, therefore, automatically puts one into the category of “sick” people (think “autism epidemic”), with a concomitant obligation to “get well.” But if you have a condition from which you can not “get well” according to the standards of the larger culture, you are completely unable to fulfill the one social imperative that the world gives you. And if you fail at that one obligation, then the quality of all the other social roles that you might have — father, mother, husband, wife, friend — immediately becomes suspect.

Thus, you end up with the widely held belief that the partners of disabled people are heroic for sticking around, and that they do so only out of pity, as though disabled people are not full and equal participants in the process of their own lives. And you get a great deal of talk about the numerous (and very real) challenges that the parents of disabled children face, to the exclusion of talk about the numerous (and very real) delights that such parents find in their disabled children.

You get T-shirts, mugs, and tote bags that say, “I love someone with autism.” You don’t get T-shirts, mugs, and tote bags that say, “Someone with autism loves me.” I’ve considered making up some items with that message on them, but I think it would only depress me to find out how few I would sell.

Of course, defining us as “sick” generates a great deal of money, energy, and emotion in the race for a “cure.” After all, if our one imperative is to “get well,” the culture is going to make damned sure that we do it. And, inevitably, the only way to get other people to join the search for a cure is to generate FUDD (fear, uncertainty, doubt, and dread) about living with a disability. In the autism world, Autism Speaks is masterful at this form of gamesmanship, which has the net effect of making the parents of autistic children absolutely terrified of what might happen to their children without all the latest treatments, without 40-60 hours per week of expensive therapy, and without that elusive “cure.”

The fact that there are millions of disabled adults who have created happy and fulfilling lives, without full-time treatment and without a cure, seems to matter not at all. We are ignored, and why? We have broken the obligation of being a “sick” person. We have not remained passive. We have not lived our lives in a quest to “get well.” We have lived our lives in a quest to live well as the people we are.

As a result, we find ourselves in the vortex of a great deal of distortion for wanting to simply be at peace with ourselves and carve out a meaningful life. It’s as though, having given up our “patient” status, we’ve committed some sort of cardinal sin. Thus, you get autistic self-advocates, who do not want to be cured, being told that we’re faux autistics. If we reject the role of the “sick” person, with the one overriding obligation to get better, it’s as though we short-circuit the cultural wiring. The response is often along the lines of, “If you refuse to see your autistic mind and body as sick, and you refuse to accept the social role that having such a mind and body entails, then you must not be autistic at all.”

That logic, of course, is not logic at all, which is an indication of how deeply threatening stepping out of our assigned role feels to other people. And the illogic means that we face psychological warfare of the worst kind: we find ourselves verbally stripped of the very condition that is the source of our struggles, our triumphs, our sensitivity, our discipline, and our awareness. In those moments, it’s as though our entire life histories have been erased.

Were we not threatening a deeply held cultural value, the response to us might be somewhat more productive, along the lines of, “I give you a lot of credit for your strength and your accomplishments, and I celebrate that you have a happy and fulfilling life. But please be aware that my adult autistic son, who tries to self-injure all day long, who bloodies himself on a daily basis, who gives himself concussions when he’s stressed, is in a state of irremediable pain that no accommodation can fix. Do you understand why I want to move heaven and earth to find a cure? And, until that help arrives, can you give me some insight as to how I might understand what is happening to him?”

That would be a conversation worth having. Unfortunately, I’ve never seen it actually happen.

In the absence of that conversation, I understand the wholesale rejection of words like “disease,” “disorder,” and “sickness” in the autistic community. I’ve gone to great lengths to distance myself from words like those, and I’ve always felt a great deal of discomfort about it, too. After all, what is so shameful about having a disease, or a disorder, or a sickness? Isn’t rejecting those words just playing into the hands of those who see disability as the worst possible thing that could happen? Don’t we need to reclaim those words and empty them of all of their dehumanizing connotations?

I think we do. But it’s difficult to do so when being labelled diseased or disordered puts you into the trap of having only one social role, and it’s a role you can’t fulfill. Under those circumstances, it’s entirely understandable that the response would be to reject the label altogether.

As I sit here thinking about all of these issues, I’m reminded of someone I never met, but about whom I know a great deal: my husband’s late wife, Karolka, who died of ALS ten years ago, at the age of 55. One of the most memorable things that Bob has ever told me about her has to do with the whole issue of disease and cure.

Even before the diagnosis of ALS was confirmed, Bob and Karolka sought out all kinds medical interventions to try and heal her — or to at least slow down the progression of the condition. And on a regular basis, they would hear from a friend or community member with another great idea for them to try. At a certain point, Karolka decided that it was time to stop chasing a cure, and to start accepting and living her life. Even after she’d made that decision, people would periodically show up with new ideas, but she had moved on, and when she did, she found a great deal of joy.

She never referred to ALS as “my disease.” She always referred to it as “my condition.” And lest you think that she was engaging in feel-good, New Age, mamby-pamby, politically correct nonsense, please allow me to disabuse you of that notion. She had absolutely no time for bullshit of any kind, and the last thing on her mind was a desire to fulfill someone else’s idea of how to talk about her life. But in speaking about ALS as a condition, rather than as a disease, she gave herself a great gift: She made herself an active participant in her process of living and dying, rather than a passive victim of an enemy beyond her control. And she released herself from the obligation of having to “get well,” when getting well was out of the question.

I’m not saying that every disabled person has to see himself or herself the same way. And I’m certainly not saying that it’s not okay to want a cure for one’s condition — although there are a great many troubling consequences to having a cure in a culture in which our main social obligation would be to avail ourselves of it.

What I’m arguing against is the whole idea of the obligation altogether. Far too many people will never have typical neurologies, typical bodies, typical minds, or typical ways of being. Giving disabled people an obligation we can’t fulfill means that we become people of less than equal worth. And it also means that we have very little support to fulfill a number of other roles — such as mother, father, husband, wife, son, daughter, friend, neighbor, and community member — that we want and need, just as everyone else does. The overriding quest for a cure means that an organization like Autism Speaks spends most of its budget on research, and only 4% on services for autistic people living in the here and now. What is this “autism advocacy” organization advocating for, anyway? It is advocating for us to assume one role, and one role only — that of a patient, passively waiting to get better. It is not advocating for us to fulfill our birthright — to participate fully in all that the world offers to typically able-bodied people.

A few years back, after I received my Asperger’s diagnosis, I told a friend of mine who lives in Jerusalem, and who himself lives with a chronic disability. His response was something along the lines of “My sister, I will pray to Our Creator to heal you.” I was rather aghast at his response, as loving and as well-intentioned as it was, but I couldn’t quite articulate why. I wrote something back to the effect of “Please don’t pray for my healing, but for my ability to manage my life with strength and dignity.”

I never head from him on the subject again. But if I had it to do over, I’d expand on my request for his prayers and say, “Please, don’t pray for my healing. Please pray for my strength. Please pray for my dignity. Please pray that I have supportive friends and a loving community. Please pray that I continue to find meaningful work. Please pray that the world stops seeing me as broken. Please pray that others don’t react to me with fear and prejudice. Please pray that I live a long and happy life.”

Perhaps I’ll still ask for those prayers.

© 2011 by Rachel Cohen-Rottenberg

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Living with an Open Heart

May 7, 2011 Rachel Childhood, Communication, Friendship, Parenting

My daughter has been going through a difficult time in these past couple of months. I don’t want to share particulars, except to say that she’s dealing with having been abandoned by someone she was very close to — someone to whom she was a very loving and caring friend. It happened very unexpectedly, without warning, and left us all reeling.

Ashlynne has dealt with some difficult and heartbreaking things before, but there is something going on here that feels much different to me. It feels like a loss of innocence, as though her childhood has abruptly ended. Perhaps it’s because it’s yet another ending — like the end of high school, the end of living at home, and the end of the arc of her first eighteen years. Because it came so quickly and so painfully, it’s resonating across all these other endings.

It’s like a tear in the fabric of Ashlynne’s past. It hurts to imagine her going off to college without the tie to the past that this friend represents. There’s barely a thing that Ashlynne owns that doesn’t have the memory of her friend intertwined with it from the past five years of their lives together. And so, her friend’s absence is always palpable.

We’ve had a number of long talks about the situation, and Ashlynne is aware that she has done nothing wrong. So we’re not spending any time on second-guessing and self-blame, thank God. Instead, we’re starting to talk about the kind of people we are in this family, how it feels when people take and walk away, and how to care for our hearts and minds in these kinds of situations.

I have been in Ashlynne’s shoes many times in my life. It’s in my nature to be helpful. It makes me happy, and it rarely feels like a burden. And even when it does feel like a burden, it gives me satisfaction to carry it. Many times, I’ve been the person to give with an open heart, only to find that the other party is nowhere to be found when my hour of need arrives, or when it’s time to celebrate a joyful event.

I’m not talking about helping by giving money or material things, as I don’t give either away very easily at all. It tends to complicate friendships, and besides, I’m eminently practical and sensible when it comes to both. I’ve never been ripped off or taken advantage of financially, and I never will. In financial matters, it’s in my nature to be deeply suspicious and to exercise an abundance of caution.

But emotionally and spiritually, I flow outward. I used to think this basic approach derived from my autism. I used to think that, because I have neither the ability nor the desire to manipulate people, I’m just open to what they need and how I can help, and that I get blindsided when they don’t reciprocate.

But I was wrong. It’s not the autism at all. My neurotypical daughter, my neurotypical ex-husband, and my neurotypical present husband all operate just as I do, and they’re all just as capable of being blindsided. None of us thinks that life is all about us, none of us holds back from wanting to help people in difficulty, and none of us, in our heart of hearts, really expects things to go as badly as they sometimes do.

My ex-husband used to sum up his relationships with other people by saying, “I’m the guy who always picks up and drops people off at the airport, but when it’s my turn, people just tell me to take a taxi.” I spent a lot of time in that taxi with him, literally and figuratively, over the thirteen years of our relationship, so I know that he’s right.

My present husband is also a very generous person whose first impulse is always to ask how he can help. What’s troubling is how often people take that help completely for granted. He does it all so lovingly, so patiently, and so well that people often think that he’s some sort of higher being to whom it all comes naturally. They’ll recite an encomium on Bob and what a wonderful person he is, but deep down, most of them have no understanding whatsoever that he has worked very, very hard, throughout his life, to have the spiritual and emotional discipline to do what he does. It’s not something you’re just born being able to do. Yes, he’s got some great raw material to work with, but without all his years of spiritual and emotional work, all that great raw material would have come to nothing.

And what’s even more upsetting to me is how few people understand or appreciate how much the giving takes out of him, and how much support he needs.

And my daughter is all about counting her blessings and wanting to share them with others. She is welcoming, generous, and caring. I don’t think it ever occurred to her that what just happened was a possibility. Sure, people can have a falling out, but you’ve got some warning there. You know that things are not good, and you’re in conflict. In this situation, there was no warning. Absolutely none. It just happened, like a piano being thrown out a fourth-story window and barely missing your head.

It tears my heart out. It really does. I feel sad, and I feel well and truly pissed, too.

But all I can do, in addition to supporting Ashlynne emotionally, is to work through the current issue with an eye to how to approach these situations in the future. So I’ve been reflecting on relationships lately, and on the things I’ve learned that might be helpful to Ashlynne as she enters adult life.

There are some situations in which you can make a conscious choice to give, without any expectation of reciprocity. That’s a very high ethical level of giving, and perfectly appropriate in some situations. It’s not a bad way to live, so long as you’re aware of what you’re doing and why.

But you can’t base a friendship or an intimate relationship on that kind of imbalance. There has to be reciprocity. So I’ve learned, over the years, to scope people out better. I don’t just pour out all my giving at once anymore. I see what the other person is capable of, and I try to match it. It’s never perfect, but I’m getting better at it. So I’ve suggested to Ashlynne that she stay mindful of holding a balance and that, when the balance is upset, that she be aware of it and how to bring it back to center.

Of course, part of what feeds an imbalanced relationship is a failure to articulate needs. When I don’t assert my own preferences, I have no way to gauge the other person’s level of commitment to me and what he or she is truly capable of giving. In the absence of that information, there is no way to adjust the level of giving in a friendship. I just end up “on” until the other person is done taking or I’m exhausted, both of which often happen pretty much simultaneously.

It’s been good to look at these things, because it means that I can help my daughter along the path. But in the final analysis, everyone in this family is going to be open to the kind of hurt that Ashlynne is going through right now. I don’t think there is any way to completely protect against it without closing off and distorting our true natures. We can take steps to avoid these kinds of situations, but we’ll never be immune to them, because we will so often take the emotional risks that come with doing the right thing.

I’ve come to accept the situation for myself, to some degree, but I’m having a much harder time accepting it for Ashlynne.

In my worst moments, I feel like an absolute fool for having raised Ashlynne to be a kind and ethical person. In the past week, I’ve actually thought to myself, “What an idiot I’ve been! If only I’d just said to her, ‘Honey, just go out there and take from the world. Giving is for saps.’” Instead, throughout her entire childhood, we discussed Torah, and did role ethical playing, and made a commitment to being the hands of God in the world. Sometimes, it feels as though I’ve sold my daughter a bill of goods.

But I know I haven’t. I know I’ve taught her about what’s highest and holiest in life. The solution to the madness of “me, me, me” isn’t to become part of the problem. If I’d raised my kid that way, I’d have done major damage to her essential nature — and to mine.

So am I a fool to be giving in a world in which so many people just take? Perhaps. But I’m beginning to realize that if I’m a fool, I’m a fool in the service of what’s right. I’m not big on the question of belief in God, but I am very big on my experience of God, and doing right is the experience of God in the world for me. In the eyes of the world, maybe I look like a fool to think about giving before taking. But I’m learning not to care. Doing what’s right makes me feel safe, and sane, and connected to something greater than myself. The opinions of other people really can’t hold a candle to that feeling.

So screw the wisdom of the world. Yes, there’s a lot of difficulty and disappointment on this path, and sometimes, I wish I could save my daughter from it. But I know that I’d be interfering with the beauty and wonder of who she is, and with her connectedness with all that is, and that, I will never do.

© 2011 by Rachel Cohen-Rottenberg

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