The Horse Boy

The Horse Boy

I haven’t written about documentaries so far in this blog, and so I figured I should probably begin this post by laying out some basic truths about documentary films. You know, just so we’re on all the same page here.

A documentary film uses selective filming, editing, and narration to tell the viewer the story it wishes to tell. Nothing more, nothing less. That is absolutely fair, of course; Storytelling is what documentary films are all about. However, seeing as that is the case, documentary films should never be taken at face value. They do not give the whole picture; and they don’t necessarily – nor are they obliged to – give even an honest picture. The fact that the raw material of which they are crafted is footage of mostly spontaneous social interaction contributes greatly to their magic and appeal. But we must avoid using such terms as truth, reality, objectivity etc. when discussing documentaries. They’re not necessarily any more “real” than a romantic comedy starring Adam Sandler. So there’s simply no use in questioning their validity or truthfulness, any more than we would that of 50 First Dates. They’re stories. They’re representations of reality, yes; but that doesn’t make them particularly real.

Right? Right. Now that that’s out of the way, I can begin.

I have to admit that as a social anthropologist studying autism, I have made a decision (not necessarily a conscious one) to focus on the experiences of autistic people themselves, rather than those of the people around them. I felt the experiences and perspective of parents to autistic children, for example – important as they may be – are already getting quite enough attention as it is. And maybe I just didn’t want my own understanding of autism to be skewed by them. I can’t vouch that this is the best way to go; I did have parents suggesting to me that my perspective would be intolerably swayed without considering their perspectives. Well yes, maybe. The thing is that any perspective is always swayed, so you might as well be aware and in control of just how you allow yours to be influenced. Either way – the fact of the matter is that I mostly distance myself from the perspectives of parents to autistic children. This also means, almost inevitably, that I distance myself from the experiences of autistic children; except when those are reflected upon by autistic adults when recalling their own childhoods.

So The Horse Boy was, in a way, an important reminder of the very obvious fact that every autistic adult has a history of being an autistic child. And that parents are very often the most influential factors in those children’s lives. I needed this reminder, strange as it may seem.

I enjoyed The Horse Boy. It had a certain honesty to it that appealed to me and made me think long and hard not only about autism, but also about parenting – including my own. Because The Horse Boy wasn’t so much a film about Rowan (the child). It was more a film about his parents – particularly his dad, Rupert, who apparently was the one to come up with the idea of going to Mongolia in the first place. It is a film about relationships – Rupert’s relationship with his wife, with his son, with autism (as a thing, a category, a concept), with horses, with Mongolia, and with himself. And yes, also, implicitly, with a camera-crew and the prospect of making a successful documentary. So The Horse Boy, the way I saw and interpreted it, is indeed a film about a parent’s journey; but as with any good parent, his child – his son’s well-being, comfort, happiness – is an inseparable part of his own experience of life; of his own well-being, comfort and happiness. These connections and interrelations are the stuff of which all families are made of. So ultimately, this is a film about a family. A family that struggles. A family that needs help – and that seeks an unorthodox way to relieve it of its struggles.

The Horse Boy isn’t about healing autism, and it deserves credit for that. Sure, they all struggle with autism; Rowan especially, but his parents as well. But autism is never framed as a rival or an enemy; the idea of somehow eradicating it is never brought up. Autism is not conceptualized as a separate thing from who their son is. Instead, the family is simply trying to deal in the best way it can with the challenges having an autistic child – or in Rowan’s case, with being autistic – presents. The Horse Boy is about healing the distress that often accompanies being autistic, and that which accompanies loving and caring for an autistic person. This cannot be done with a drug or any other sort of biomedical intervention; because such interventions inevitably focus on the body. But the problem isn’t in the body; or at least not just in the body. Indeed, some forms of distress are made of broken or loose social connections. Or impossible expectations. Or negative emotions. Or confusion. Or doubt. Or uncertainty. Or fear.

And it is these aspects of the child’s and parents’ distress that were targeted by the Mongolian shamans. And it is why – to the audience’s perceived amazement – the rituals actually helped.

I don’t know hardly anything about the Mongolian belief system or its traditional medicine. From the film, I can infer that it involves some sort of ancestor-reverence and belief in spirit possession (so that the shaman argues that Rowan’s soul is possessed by Kristin’s deceased grandmother). Explicitly, the healing rituals are apparently meant to both appease the spirit and confront it in battle, in order to remove its grip of the child. But we don’t have to accept the metaphysical belief system of the shamans to appreciate the positive effect that such a ritual may have. There are other, more earthly ways to account for why this ritual – or rather, this series of rituals – had made a difference in the lives of Rowan and his parents.

It’s not so easy to tell what this effect could be, however. With the limited information we have, it is indeed quite impossible. To do that, we will have had to take a much, much deeper look at the rites themselves, where exactly they were performed and why these places are significant, who precisely performed them and what their exact role in society is, what artefacts were used and what they symbolize, what texts were recited and what they mean, as well as the specific interactions between the healers and Rowan, between the healers and Rowan’s parents, and between the various healers themselves. Not least, a very profound familiarity with this particular society’s beliefs, values, and language is required. Without any such knowledge, the best we can do is speculate. And speculate is precisely what I am going to do. I am hoping to show that whatever the specific characteristics and attributions of the rituals may be, such rituals in general may indeed have a positive, durable effect on relieving one’s distress. And this is regardless of whether one is willing to accept the existence of spirits and demons.

Mainly, what the series of rituals carried out during the family’s visit to Mongolia did was to put Rowan’s suffering in context – a different context. It has given it a narrative: a cause, a reason, an explanation. A history that goes far beyond his own still short existence. It has located Rowan’s suffering; and significantly, it has located it outside of Rowan’s own body (or more accurately, inside his body, but as an external intruder). The shamans never mentioned ‘autism’, mind you. ‘Autism’ was never the object targeted by their rituals. They targeted only the suffering; only the distress. So in the eyes of father, mother and son, what the healing rituals did was to strip Rowan’s distress – as well as his parents’ – from the binding label ‘autism’, with its usually-not-very-positive, Western and Modern and Medical connotations. Instead, they have placed them elsewhere. Once this change is achieved – and it’s not easy to achieve, as one can easily imagine – many other things are likely to change with it.

For example, the series of rituals had the rather immediate effect of altering Rowans’ surroundings – mountains, horses, streams etc. – as well as, arguably, his symbolic position within those surroundings. It has placed him in the centre – in fact, it has placed him as the centre – rather than viewing him as (metaphorically) lagging behind or being pulled forward to somehow keep up. It has altered Rowan’s parents’ understanding of him and expectations of him, thus in a sense modifying and revalidating Rowan’s presumed role within the family, within society – and indeed within the world. It has probably affected the relationship between the two parents, perhaps readjusting it so that it is more geared towards Rowan’s own difficulties and capabilities, which are presumably very different from those imagined by Rupert and Kristin since before he was born. Or perhaps the rituals have somehow ruptured Rowan’s constant painful memory of a (short) lifetime of much distress, anxiety and discomfort, fixing his gaze forward instead, towards a more comfortable, accepting, bright future.

Like I said, I can’t be sure of any of these claims. They are all mere speculations – if that. But my point is that too often, when we think of autism and the distress and suffering that accompany it, we think of brain wiring, cognitive functioning, DNA strings etc. Those all play a part, yes. But other factors are also meaningful. It could be argued that other factors are even more meaningful. These ‘other’ factors, such as those noted above, are neither fixed nor inevitable aspects of autism. Their transformation shouldn’t ever be conceived easy, but it shouldn’t be reckoned to be impossible either. Our experience of the world is constructed of many types of materials, connected in an infinite number of ways. At least some of them are potentially alterable.

What do you make of all of this?

Ben X

Ben X

In what would usually be referred to as ’the real world’, Ben is a Belgian (Flemish) teenager; lonely, full of anxiety, practically mute, and autistic. Is he anxious and silent because he is autistic? Well, partly, yes. But it is also because he is treated ever so horribly by his classmates who tease him, bully him, beat him, drug him, and humiliate him. Despite having loving and caring parents, and at least one kind and considerate teacher, Ben’s ‘real world’ existence is full of suffering; it is quite unbearable.

But in the virtual on-screen world of Archlord, he is Ben X; a hero, a skilled warrior, an esteemed and respected figure; and the fellow in battle, travel, and play to the equally skillful heroine who goes by the name of Scarlite.

“The princess of letters, on the other side of the land; who is always by my side when things get out of hand; who knows me without knowing my name; who could put me back together again; who could make me ‘sleep tight’.“

During the film, Ben constantly shifts back and forth between the two worlds he inhabits; master in one, victim in the other; admired in one, tortured in the other. Is it any surprise he prefers one over the other?

An excessive liking to video games is frequently framed as a problem; quite often, the word addiction is invoked. I don’t want to go into a debate about whether excessive gaming is really such a bad thing or not – I guess I just find it hard to generalize. In principal: yes, a healthy life should ideally consist of various kinds of stimuli, not just one. But if video games offer someone a place where they can finally shed their anxiety and have some much needed relaxation and fun, while socializing in ways that would otherwise simply be too overwhelming, frightening, or painful – I don’t know, who’s to say that’s wrong? But like I said, this isn’t the discussion I was going for. What I would like to talk about is the role that virtual worlds have in the lives of those who play it; the important role that is quite often misunderstood, and possibly unappreciated by others.

Tom Boellstorff is social anthropologist. Like many others, he has chosen to study a culture different than his own. It has its own rules, norms, values, and symbols. Like members of most other cultural groups, the members of his studied culture, too, have bodies and occupy a space. Except in this case, the bodies are avatars, and the space they occupy is the virtual world of Second Life. Years of bad rep by people who don’t quite understand this world have contributed to a conception of Second Life as offering a type of a shallow, worthless sociality; a fake. Boellstorff shows exactly the opposite: Second Life, and presumably any other virtual world, is as unequivocally social, and just as real as any other space where people live and act.

First, he says, let’s get rid of the useless distinction between real and virtual that only confuses things. Connections made online are every bit as real as the ones made offline; people make friends on chat rooms, meet life partners in virtual worlds, find support in discussion forums, and joke around with other people on twitter. What’s not real about any of these activities? Is it different than making a friend in a book shop, being on a date in a bar, or sitting in a therapist’s clinic? Of course it is different. But is it any less real? Nope. It’s mediated, yes. But hey, so is a phone conversation, and that hasn’t been said to be fake since probably a century ago. Once the landline has become widespread, and we became accustomed to it, we accepted it as a valid form of communication. Virtual worlds are not essentially different from the landline insofar as they are a means of communication; visually elaborate and creatively designed, yes (how is that a bad thing?), but merely a means of communications nonetheless.

So instead of talking about the real-world, when all we’re talking about is communication-that-isn’t-mediated-by-technology, let’s talk about the actual world instead, as the counterpart of the virtual world. Different as the actual and the virtual worlds may be, both are equally real.

So if we agree that the story is not that there is the real world on one hand and a fake world on the other hand, but that we are simply talking about two spheres of the real world, we might want to ask – what’s the relationship between the two? How does one relate to the other?

Try this explanation: the virtual and the actual are distinct, but they are not separate. What happens in the actual world shapes one’s experience of the virtual world, and what happens in the virtual world shapes our interpretation of the actual world. It’s basically a continuous two-way dynamic, with mutual effects. How is this outlook helpful? Well, we could say, for example, that Ben’s online experiences make him see his actual-life reality in a certain way – as compared to (compared to the virtual world, that is), rather than as simply is. This has both negative and positive consequences: it inspires in him hope, suggests strategies for improvement, and offers a reservoir of images for day-dreaming and fantasizing. But at the same time, it highlights reality (actual-world reality) at its poorest: a violent, cruel, uncompassionate existence, where people’s potential is not realized, and power is used for evil instead of good. At the same time, Ben’s offline existence affects his virtual-life: he uses his avatar to act out his emotions, to speak honestly to his friend, to exert courage, but also to show weakness.

In other words, Ben is not leading two separate lives; he lives one life, which is divided into two spheres. Ben uses relatively novel technology to do this, but other than that, is it really so unique? Think of a businesswoman, spending weekdays in the office and weekends with her family; think of an army commander who spends several months at home followed by several months in the battlefield; think of a football player – running and kicking on the pitch, then having dinner with his wife; think of how we all take holidays; isn’t it quite the same thing, at the bottom of it? Same world, different spheres of life; same person, different ‘selves’.

Also:

If Ben inhabits two spheres, and occupies two bodies, can he be said to be two people? Well I wouldn’t go that far, but I would definitely agree that Ben has two selves. Not a real one and a fake one, mind you, as we’ve already established that they’re both perfectly real. They are certainly different, though; so perhaps the better question would be to ask in what way his two selves are different. And in this respect, the most obvious difference between the living body and the digital body is that while the former can feel, hear, touch, taste, smell, and sense – the latter can’t; it is numb, indifferent, desensitized.

So the living body has the capacity for pleasure; but also for pain. We tend to idealize bodily pleasure, and lament its absence. But like Pink Floyd suggested, numbness can often be comfortable; particularly if the alternative is not pleasure, but pain and suffering.

Another important difference is this: there is only so much one can do to change their physical body; of course you can exercise, eat better, dye your hair, dress according to whatever fashion you like, and even have cosmetic surgery – but mostly, it’s a given. You keep what you draw. Your virtual body, on the other hand – now that’s just one big variable. You can choose your gender (with the body parts to go with it), your appearance; even your species! Feel like a pixie toddler today? A bi-sexual cross-gender giant? A carnivorous double-hump camel? You can be that. And you can play the part with confidence, because no one will accuse you of acting childlike when you should be acting like an adult; for acting masculine when you’re expected to be lady-like; for making jokes when situations calls for serious behaviour – or the other way around. In other words, you can just be yourself – silly as that may sound – when you’re a made-up character. Self-fashioning – self-creation even – are real possibilities in virtual worlds. They afford a type of creativity that goes beyond drawing on canvas, or writing words on paper – they afford creativity that can be utilized to design your very self. And for some people, particularly those whose physical existence is an endless and futile struggle to either conform to, or reject their expected social roles – to finally be able to choose the role that suits you, down to the very last detail – how appealing is that?

“In games you can be whoever and whatever you like. Here you can only be one person. The jerk you see in the mirror. I have to teach him everything. For example, I have to teach him to laugh. People like that. To ‘give them a smile’, as they say. Which means smiling when really there’s nothing to smile about. That’s how you create your own avatar.”

Get it? We create avatars in the actual-world all the time. Except it’s harder, and we get very little choice about what we want these avatars to be.

In his mind, Ben wishes for his two characters – his two selves – to unite. He can only fantasize how his virtual self would react in the actual-world events he is forced to cope with. If only Ben had Ben X’s strength, courage, swordsmanship, and way with words, his life would have been so much better. But he hasn’t; and it’s not. It’s as hard as anyone can imagine. Ben X might have it made; but Ben is miserable.

In one critical junction in the story, it seems as if at least one formidable achievement of Ben’s virtual self might finally be transported to his actual-world; the friendship and affection of his co-player, Scarlite. Her actual-world self is worried about his, and she’s coming on the train to meet him. But the embodied, actual-world version of Scarlite simply proves too petrifying for him to approach – he can’t even say hello. Then, at one tragic moment, the pain of Ben’s existence overwhelms him, and he decides to kill himself by jumping under a moving train. I’m not embarrassed to admit that I myself have confused the actual-world and the cinematic world, and cried “NO!!!” at the screen, with a very real voice, led by a very real emotion.

Ben doesn’t kill himself, luckily, though I dare speculate that his eventual decision to go on living was solely motivated by the movie makers’ concern for the intactness of their audience’s nearly-shattered hearts; not by any real motivation of the protagonist. In that sense, Ben’s delusion of Scarlite as a loving girlfriend is a classic Deus ex Machina (adequately defined in Wikipedia as “a plot device whereby a seemingly unsolvable problem is suddenly and abruptly resolved by the contrived and unexpected intervention of some new event, character, ability, or object” – isn’t that precisely what Ben’s delusion of Scarlite is?) In other words, if Ben were to kill himself, this would have been a devastating story, and yet a remarkably sincere one (it seems the true story on which the novel was based did, in-fact, end with suicide). Adolescent suicide is a real-world problem, so an honest cinematic depiction of it would not have been ill-suited. But as it happened, the makers of Ben X chose to convey the dangers and injustices of high-school brutality in a different way; through their protagonist’s somewhat playful ploy, tricking his community into believing he had committed suicide, and noting their collective conscience at work. To actually have their main character proceed to kill himself would, I believe, send the same message, but so much more powerfully.

But at any rate, Ben X offers quite a brilliant depiction, I thought, of an important part of the experience of being autistic. It’s not always charming naivety, childhood innocence, good-naturedness, and a wholesome dash of some much-called-for honesty; instead, sometimes, it’s about suffering, anxiety, depression, distress, loneliness, and even suicidal thoughts. Aren’t these very often what autistic adolescents must cope with, in a society where antipathy, intolerance, and plain cruelty are all too common?

“Then it was time for truthfulness. Shamefulness, painfulness.” Indeed. Sometimes it is.

What do you think?

Adam (2009)

Adam (2009)

I first wrote this post immediately after watching Adam for the first time – I wrote very fondly of the film, as I honestly enjoyed it at the time. I still think it’s a pretty good movie, but after reading this review by the awesome Caroline Narby at bitch magazine, I see now that I was actually overlooking some crucial points. This revised post is an attempt to reconcile my formerly held opinion of the movie with my new one.

(Which makes me wonder, which of my opinions of the film is more authentically ‘mine’? The one I formulated myself right after watching it, or the revised one, reformulated after reading someone else’s thoughts and reflections? I guess the short answer is: the latter.)

Let’s start with the alien metaphor; it seems like you can’t read / watch anything about autism without coming across some mentioning of a life form from another planet. Why don’t we talk about that for a while?

In the very beginning of the film, during the opening captions, Beth has this to say:

“My favorite children’s book is about a little prince who came to earth from a distant asteroid. He meets a pilot whose plane has crashed in a desert. The little prince teaches the pilot many things but mainly about love. My father always told me I was like the little prince. But after I met Adam, I realized I was the pilot all along…”

So of course this is a reference to Antoine de Saint-Exupéry’s The Little Prince, originally published in French in 1943. If for some reason you haven’t read it yet, stop everything you’re doing and go read it now. Seriously, I’ll wait.

Are you done? Ok.

So what’s the deal? Why is the association of autism and alienism so common?

Ian Hacking, possibly one of the more prominent philosophers alive today, has written an article about exactly that. It’s called Humans, Aliens & Autism. Nothing too fancy or sophisticated, but a thoughtful explanation nonetheless. I’ll give you his argument in a nutshell.

“Aliens in modern space adventures may talk and walk like us, but by definition they are not human … Aliens can be better than us, as in moral fables such as ET. Most of the time they seem to be bent on destroying us … However, we seem to hold up aliens as mirrors to teach what is best or worst in us or in the human condition” (2009:45-6)

Hacking makes a great point here. When you think of it, aliens are always a metaphor; a metaphor for something that’s not us, but that’s not entirely different either. Some form of alter ego for the whole of humanity. An invention that’s meant to tell ourselves something about who ‘we’, as a species, are.

Ok, so what does this have to do with autism?

Well, Hacking believes this has something to do with the difficulty many with autism have with making eye-contact. This is because people – and this has been thought true for millennia – feel they can know the person in front of them just by looking at their eyes. You know how they say that “the eyes are the mirror to the soul”? Well, that sort of thing. Looking someone in the eyes allows us (well, some of us) to know the person in front of us, or at the very least feel like we know them (this distinction is crucial). Hacking calls this perceived ability ‘Köhler’s phenomenon’. If we are denied access to this proverbial “mirror to the soul” for whatever reason (either because the person in front of us isn’t making eye-contact, or we aren’t) we are confused, uncomfortable, frustrated, and mostly – we lack the words to describe our experience. It’s too unique. Hence, the need for a powerful metaphor.

Hacking argues that “…that kind of immediate understanding that Köhler described is not the common property and practice of that part of humankind that is autistic”, and he concludes: “We asked, “why does the metaphor of the alien crop up so often in fact and fiction?” We can now state an answer: because of the absence of Köhler’s phenomena in relations between neurotypicals and autistic people.” (2009:52) So the reason aliens come up so often in talk about autism is because autistics and neurotypicals do not share a certain ‘bedrock’ of experience that allows each-others’ inner being to be projected outwardly, and seen directly by the observer. This creates a feeling of unusual strangeness, which is well reflected by use of the alien metaphor.

Arghhh, I dunno. I mean ok, Hacking’s explanation is relatively straightforward and logical (if a bit obvious), and I don’t feel a burning need to confront it. But I’m not very satisfied with it, either. Because what Hacking might be overlooking is the sort of power dynamic that is reinforced whenever the alien metaphor is used. Difference is very rarely neutral. Seeing as the alien metaphor invokes a very profound feeling of difference, we need to ask what is the political implications of referring to an entire group of people as ‘aliens’ (and I suppose this is where the tastefulness of the alien metaphor in Adam is brought into question). It’s not necessarily anything as simplistic as ‘we are good, they are bad’; we already saw that like in E.T. – or The Little Prince, for that matter – the alien is often morally superior to the earthlings. I would think the risk of using the alien metaphor is in that it reproduces a state of events in which one group (neurotypicals, in this case) is more privileged to determine the extent of the difference between it and the other group. The voice is always the earthling’s voice. Hence the voice of the autistic person, and his/her way of defining themselves or categorizing themselves is not taken into consideration. In Adam, the alien metaphor shapes the viewer’s experience of the story in the following way: despite Adam’s name being in the title, it makes it a story about Beth. Because if Adam is the alien, then we are quite forcefully made to view the story through Beth’s perspective of him. As Caroline Narby rightfully points out, Adam becomes passive; merely a plot vehicle, whose “ultimate purpose is the moral instruction and betterment of the non-disabled Beth and, by extension, of the audience.” Spot on.

In its use of the alien metaphor, Adam is a striking example of Othering. It is not a bad-intentioned endeavour at discussing autism, but a misguided one nonetheless. Difference is fine – we need differences, we thrive on differences. Sameness should not be an ideal, and differences should not be concealed. But one has to be sensitive to power dynamics when discussing differences. To refer to another as so strange that he may well have come from a different planet is, well, plain wrong. Not just for its implications (the false assumption that autistics can never be sufficiently understood by us NTs – so what’s the use of even trying?), but for the very reasoning that brought it on: Autism means difference, but not THAT much of a difference. We don’t need to look up to the stars to account for this difference – the people on Planet Earth are sufficiently diverse. And we are all equally human.

And then a harder question creeps up: what to make of all those instances when autistic people refer to themselves as aliens. Wrong Planet being the most prominent example. I’m going to leave this question open for now. But I would love to hear what you all have to say about this!

I actually devoted way too much text to what is a very small part of the film – I’m aware of that. But I thought it makes an interesting point of discussion nonetheless. I want to briefly make one more point, though: I did think Adam was probably the most socially and politically aware movie about autism from all those I have watched so far.

About half way through the plot, Adam undergoes a series of unfortunate events. First, he unexpectedly loses his job; not because he did bad work, but for failing to adhere to his boss’s instructions (instead of a plain talking doll, Adam makes one with artificial intelligence; brilliant idea, but not too practical, from a commercial point of view). Then, cardboard box in hand (apparently the universal ‘I just lost my job’ signifier, in American cinema at least), he goes to watch kids in the school where Beth works. He just needed a splash of childhood innocence, to cheer him up a bit. Failing to see why an adult man watching children might worry some people, he is stopped by the police, and this quickly escalates into a violent and degrading affair. Then unemployment, and depression, and anxiety, and self- injurious behaviour.

This sequence was so political that I had to reassure myself that I wasn’t reading too much into this – this is an American movie after all. But no, it’s all there. And I have to give the creators credit; it’s very well done. See, I come across a lot of literature on autism in sociology, social work, public health, education, law etc. So much of this really good research is concerned with the type of difficulties autistic people face that are unequivocally social, similar to those depicted in Adam. Being thrown out of school / university; being shamed in public; losing jobs and failing to find employment; being arrested and incarcerated; even winding up living on the street – these are all relatively common experiences for people with autism; at the very least more common than for the general population. Of course, just because someone is autistic does not automatically make him/her unaccountable for their actions; But there is obviously room to take a person’s atypical neurology (and life history as autistic) into account when sanctioning him with expulsion / dismissal / arrest / incarceration. And this is seldom done. That’s a political problem for autistic people; and it is a problem that the makers of Adam rather courageously took it upon themselves to engage with.

So yes, sure, you would expect Adam to realize that complying with his boss’s directions is important if he wants to keep his job. You might expect him to realize that there’s a perfectly good reason for police to want to look at his ID when he’s staring at children through the school fence; and there’s definitely an unnecessary implication of violent tendencies in his banging his head against the mirror. In many subtle ways, Adam’s depiction of autism is inaccurate, stereotypical, or simplistic. But as far as creating some awareness to the sort of problems autistic people have to deal with in this world (those that go beyond social awkwardness or inability to pick up social cues), I thought the makers of Adam did a very decent job.

So good on them.

And while we’re at it, I thought it was really fair that Adam tells Beth about his having Asperger’s himself, rather than some doctor / psychologist sharing this information; I also thought it was very cool that in order to learn about Asperger’s and to form an opinion on whether Adam is good relationship material or not (a reasonable concern), Beth reads an autobiography written by an Aspie (it was Pretending to be Normal by Holliday Willey – haven’t read this one yet); I loved the fact that the term neurotypical is used in the movie, and even as a sort of caveat to psychologists’ expertise (most of them being neurotypical, and therefore have limited knowledge about autism); and I even thought it was a brave choice to write the following lines for Beth during her fight with Adam (after he freaks out about her lying to him, and wishes her dad to go to prison for life): “You’re a child Adam. Fuck Asperger’s. You’re a fucking child”. Was that over the line? Probably. But I appreciated the implication: just because Adam is an Aspie, this does not excuse him for acting like an asshole. And that’s super fair, isn’t it? In some roundabout way, I felt this was a fairer treatment of autism than in most movies.

What do you think? I want to know.

My Name is Khan

My Name is Khan

Rizvan Khan grows up in a Mumbai neighborhood – possibly a slum. He is different from the other children; he takes things way too literally; loud noises and big crowds make him anxious; he dislikes being hugged, and gets upset by the color yellow (is a disliking of one specific color in any way common among autistics? I personally have never heard of this). He’s bullied at school, but his genius for mechanics earns him a respectable role in his community. His mannerisms are typical – perhaps stereotypical – of an autistic boy. But there is no real surprise there, or any room to wonder; we were already told by the movie’s opening captions that “The protagonist in the film suffers from Asperger’s syndrome, a form of autism.” And are further informed that “While the film endeavours to depict the character as authentically and sensitively as possible, it is a work of fiction and hence certain creative liberties have been taken in the portrayal of the condition.”

What an interesting statement. Why was it put there? Is it meant to appease those who might be offended by the inaccurate representation of autism in the film? Is it meant to forewarn the viewer no to take its portrayal of autism at face-value, lest he/she regards this as a project meant to educate, rather than entertain? Were the lessons from ‘Rain Man’ learnt – with its huge but unjustified effect on the understanding of autism in the English speaking world? Whatever the reason, I appreciated the film makers’ effort to qualify their depiction of autism as not-necessarily-accurate; after all, no depiction of autism in film can ever be 100% accurate (nor, for that matter, any depiction of anything else), so best to be aware of that fact, rather than to recklessly assume the role of educator.

As Rizvan reaches adulthood and moves to the US, he is diagnosed with Asperger’s syndrome by his sister-in-law, Hassina. “She was from Brooklyn, New York City”, he tells us. “She taught psychology in the university here. She was the first to find out that I had Asperger’s syndrome. My fear of new places, new people. My hatred for the colour yellow and sharp sounds. The reason for me being so different from everyone was defined in just two words: Asperger’s syndrome.” Quite beautifully put, don’t you think?

Rizvan falls in love with a woman, who he then marries. Later, following a terrible tragedy, he goes on the road, getting involved in all sorts of Forrest-Gump-like adventures, till the eventual and predictable happy ending, when he (spoiler alert) meets the president of the United States. Realism was never intended by the film’s makers. Over-acting and an inclination to melodramatic over-the-top-ness are hallmarks of Indian cinema, and My Name is Khan is no exception. But having said that, I did really enjoy the movie. I sympathized with and rooted for Rizvan, and I completely ‘got’ his love for the beautiful Mandira. I cried my eyes out in the sad bits, jollily danced my head during the Indian musical montages, and laughed at the good natured Bollywood allusions. All in all, I thought My Name is Khan was very good. And it raised some extremely interesting issues.

My Name is Khan is very clearly a story about difference. But the type of difference that is discussed is not so straightforwardly laid out. Initially, we are led to believe that the film deals with a neurological difference; an autistic boy growing up in a neurotypical environment (as is usually the case); treated with cruelty by his peers, but loved and understood by his mother: “No doctor could ever tell her why I was the way I was” he narrates; “But Amni… she never felt the need to know why. I don’t know how, but she found a way to know me”.

But then the plot unexpectedly turns to focus on a quite different sort of difference; riots break out in Mumbai between Muslims and Hindus. Ethnic and religious rivalry becomes the focus of the story.

As a boy, Rizvan, a Muslim, repeats to his mother some random violent rant against Hindus that he over-heard in the street. Amni, outraged, explains to him in a way she knows he will understand: Muslims and Hindus are exactly the same. People are only different insofar as they are either good or bad; that is the only difference that exists.

But if that’s the case, what can be said about Rizvan’s own way of being different? It seems to be implied that it is as insignificant as ethnic or religious differences. But is that really true?

The immediate implication of this message is obviously positive; it is that differences don’t matter, we are all the same; we are all equal. We should thus accept one another, love one another, and judge each other based on actions – namely what one does; rather than on properties – namely what one is (anyone finds this reminiscent of yet another Forrest Gump motif? “My mama always said”, Gump kept repeating, “stupid is stupid does”). This is a peaceful message of tolerance. But there is another side to this. In asserting that people are all the same, and by implicitly comparing ethnic differences with neurological differences, Amni ignores an important fact – that Rizvan’s way of being different is, well, different. It is not grounded in beliefs, traditions, texts, language, ancestry, or places of worship. It is not even grounded in the body, as is sometimes the case (from henna dyed hair through circumcision to skin color). Instead, the difference between Rizvan and his peers is grounded in their respective brains; in their minds; in – some would say – the very thing that makes them human to begin with.

In other words, we could regard ethnic or religious differences – as well as nationality or gender – as mere add-ons, under which we are all essentially the same. But when neurological differences are thought of in the same way, this poses some difficulties. Autism involves a different wiring of the brain, a different mechanism of cognitive process; so if autism is also such an add-on, what is underneath it? Is there an underneath? Because if there isn’t (it’s just turtles all the way down…), can autistic people really be said to be the same as neurotypicals? What would be the nature of this sameness?

The view that autistic people and neurotypical people are essentially the same is obviously good-intentioned, but it’s inaccurate. Primarily, it relies on the assumption that in order to achieve equality and acceptance, we first need to establish sameness. That’s not necessarily so. Equality and acceptance can be similarly achieved by simply acknowledging the fact that people are different; that this difference is not necessarily at the surface level, but at the very core of what makes us human; that this difference in no way implies the superiority of some over others, or dehumanizes certain groups; quite the opposite. It implies that there is more than one way to be human. It implies that in order to achieve personhood, one does not need to first establish similarity to the normal or the typical. One does not need to change their ways, to mimic, or pretend. One can be divergent, even radically so, and still be just as bit as human as someone who is the very definition of typicality.

Kristin Bumiller wrote about this in her 2008 article entitled ‘Quirky Citizens: Autism, Gender, and Reimagining Disability’. She believes that autism advocacy, and the neurodiversity movement in particular, has much more to offer society than ‘just’ promoting acceptance of autistic people (crucial in itself). “In their quirkiness”, she writes, “[autistic people] contribute to a culture of citizenship that fosters equality without sameness.” Neurodiversity fosters citizenship based not on sameness nor on difference (because both imply the existence of a benchmark norm), but on inclusion and acceptance; on individual roles and contributions. “Although neurodiversity is most important to people who identify as being on the spectrum,” she later adds, “it also has the potential to enrich society and change how we understand ourselves and other people.” (2008:982)

And how grandiosely was this potential realized by the protagonist of My Name is Khan, whose life-course is continuously affected by politics of differences. His brother rejects his Hindu wife. “You cannot marry her, it’s Haram!” he says. “She is a Hindu. There a lot of differences between them and us, understood?” to which Rizvan replies, “No, there’s no difference. Good people, bad people. There’s no other difference.” The 9/11 attacks on the World Trade Centre lead to a wave of hatred in the US; particularly towards Muslims, but anyone with a brown skin is suspect. His step son is killed in a racist attack. His wife sends him away, blaming his ethnicity for her son’s death. On his wanderings, he is the target of suspicion, fear, and ridicule, due to either his skin color, his creed, his autism – or all of these combined. His donation to a fund raiser is denied, as it is an event “for Christians only”. “Honey, keep it,” he tells the receptionist, “for those who are not Christians in Africa”. He is lodged by a kind Georgian Black woman and her young son, whose older brother has recently died in the war in Iraq. In a memorial service in the village chapel, he is asked to say a eulogy for his step son. To recap: in a Southern US state, In a Christian Church, in a village populated by African-Americans who bereave the death of their sons in Iraq, the Muslim Khan eulogizes, in Hindi, his son, a Hindu, who was killed by white Americans because of him having a Muslim last name. Get the picture?

Differences are omnipresent in My Name is Khan, and the protagonist is, we are made to believe, in the very best of positions to rise above these differences (without being oblivious to them, however, as one might think), and bring people of all colors and creeds together. To help each other out. To wear their cultural identities with pride, and to stand up against bigotry, prejudice and xenophobia.

In embodying a type of difference that in a way eclipses all other differences, Rizvan imagines a society where differences are respected, and where people are judged according to deeds rather than lineage, skin tone, or religious beliefs. To what extent does this tell a story of autistic people in general? Or even about autism itself, as a social category? I’m looking forward to hearing your thoughts on this. Please comment and share hits blog with others who might be interested.

And why not end with this lovely quote:

“The Book Different Minds says that people like us can’t express their emotions in words but we can write them easily. I can fill thousands of pages, millions of times with ‘I love you Mandira’. But not once could I say it to you. Perhaps that’s why you are angry with me … meanwhile whenever I have time, I will write all that I couldn’t say to you. And then, you will love me again. Insha’Allah.”

Mary and Max

Mary and Max

The sad and beautiful tale of Mary and Max is one of my favorite films of all time.

On two opposite sides of the planet, a lonely little Australian girl and a lonely middle-aged obese New-Yorker become friends. Mary and Max are both made of plasticine, yet they’re two of the realest people ever to appear on screen.

From Mary’s poo colored birth-mark to Max’s chocolate hot-dog recipe, from Ethel the rooster to Henry(s) the fish, from Ive’s painted eyebrows to Damien’s stutter, from egg laying rabbis to babies found in beer glasses, from Vera’s cooking sherry to dr. Hazalhof’s obsessions with warts, and from bird taxidermies to jars full of toe-nail clippings – every single scene in this movie is a little miracle of compassion and nuance, a portrait of humanity at its simultaneous highest peaks and lowest crevices.

Shades of brown and tan are gently sprinkled with reds and pinks, empty shelves are decorated with toys, bare walls are adorned with drawings, expressionless faces are made to smile, while the lonely and potentially grim existence of a sad little girl and an anxious middle-aged Aspie is being filled with excitement, chocolate, pets, and friendship.

I could probably go on like this forever, counting the infinite number of ways this film touched me, but what would be the point? Sufficed to thank Adam Elliot for making us this modest masterpiece, and urge whoever hasn’t watched Mary and Max to not waste another moment.

The emotional textile of Mary and Max’s existence is so rich, that one barely manages to take a deep breath between gently laid brush strokes of sadness and courage, loneliness and hope, despair and longing, fear and love. It is this vivid emotional landscape that inspired me to finally attempt a discussion on what stands at the core of my research; emotions and their meaning – particularly in the case of autistic people.

Confuzzled. Apparently just another made-up word (alongside snirt; namely the combination of snow and dirt, and smushables; the groceries found squashed at the bottom of the grocery bag), Max’s neologism reveals a lot about the nature of human emotions and the words we have for them. A combination of confused and puzzled, it even says something about the inherent limitedness of our emotional lexicon, whereby the words we have to describe our emotions are often insufficient. This limitedness is particularly consequential, I dare to suggest, in the lives of autistic people. But let us start from the beginning. Brace yourselves; discussing emotions is always an arduous task.

Many social anthropologists have wondered about the nature of human emotions. Are they universal? Do people of all cultures share exactly the same emotions? Are we all born with a capacity to experience emotions in similar ways? Do the words we use to describe our emotional states accurately reflect what we actually feel inside? Based on an extensive reading of anthropological theories, I will answer all of these questions with a hesitant ‘no’. Emotions, according to such theorists as Catherine Lutz, Unni Wikan, and Sarah Ahmed, to name a few, are not a property of the individual. They are not internal. Our emotional terms refer not to distinct ‘things’ within us, but rather to the nature of any specific relationship between a person and another person, between a person and an object, or even between a person and an idea, at a given moment. Emotions are always directed at something or another, and in this directedness they lie. Emotions are the stuff of which connections are made of. In this sense, emotions are relational.

Moreover, while all humans are born with the innate capability of being affected by their environment, their company, and even their own thoughts, this capability is not what is usually referred to when emotions are talked about. Rather, emotions refer to the cultural and lingual categorization of these affects, the connotations they raise, and the value judgment they are given (good or bad? Pleasant or unpleasant? Moral or immoral?). Emotions are the afterthought of the affective, the visceral, even the somatic. An afterthought that is inevitably framed in culture and limited by language. In this sense, emotions are socially constructed.

Similarly, seeing as humans are products of their upbringing, of the language they speak, and the social, historical and cultural context in which they live, our only available means of making any kind of sense at all of what we think and feel – is by using the vocabulary handed down to us by our parents, teachers, friends, the media etc. One cannot interpret what one cannot name. People of different cultures, therefore, or of different historical times, would have quite different ways to discuss their emotions; i.e., they will experience their emotions differently. In this sense, emotions are culturally specific.

Finally, emotions are only ever invoked in context. Sadness, or hope, do not lie within us waiting to surface; instead, emotional terms are begged when events, occurrences, relationships, and evaluations of a certain kind occur. Emotions are thus always specific, and no two are alike, despite the limited vocabulary we have whereby fear, for example, can refer to a great many different kinds of feelings, effectively crudely lumping them in one distinct ‘emotion’. When we think of emotions, when we articulate them – they are there. But when we forget about them, they simply cease to be. They are gone. When we are reminded in them again, they are then altered, changed, adapted to their new context, this time as the objects at which our new emotion is directed. And so on and so forth. In this sense, emotions are emergent.

“Max knew nothing about love,” we are told; “it was as foreign to him as scuba-diving … He felt love, but couldn’t articulate it. Its logic was as foreign to him as… as a salad sandwich”. Is this a sentiment many on the autistic spectrum share? It has been my impression that yes indeed, many autistic people frustratingly feel that love is too confusing, inexpressible, and uninterpretable to them. We all feel this at times, I would venture, but possibly not nearly as frequently as autistics do, and to a significantly different extent.

“He felt love, but couldn’t articulate it”. But if that were to be the case, how would Max know that he did indeed feel love? What would be the nature of a love unarticulated, and how would one recognize it as such? Emotions, I and anthropologists before me argue, are never independent of their articulation. In fact, it is the very articulation we speak of when we speak of any specific emotion. What is love, if it is not the loving words, the loving embrace, or the loving gaze; if it is not the motivation to act in certain ways, to think particular thoughts, or to see things in a certain light? Articulation, clearly, is not limited to words. There are various means of articulating love; and seeing as no two emotions are ever identical, articulations of love are potentially infinitely varied.

“He felt love, but couldn’t articulate it”. So what are we to make of this statement, given that it contradicts, in a meaningful way, what we take emotions to be?

Had Max felt a confusing mixture of thoughts and physical sensations of a particular kind, energizing him with great valence; arousing positive connotations and affectionate memories; warping his perspective into a good-natured acceptance of things, like when looking through the eye-piece of a camera while its lens gradually focuses on a patch of colorful flowers – while having no idea that this very concoction can be said to be ‘love’ – was it in fact love that he can be said to have felt?

The unsophisticated and disappointingly straightforward answer would supposedly be no. Love exists only when love is spoken of. Hence, Max did not feel love. But wait, love was spoken of, by the narrator, in retrospect. So in this case, Max’s sensations can be said to have been feelings of love. But what is the role of the narrator in Max’s life? None. The narrator is part of our perspective on Max’s life, not of his. Max is ignorant to the existence of any such narrator telling his story, and articulating his emotions for us, in ways Max cannot. In max’s life, love was never explicitly expressed.

But if it wasn’t expressed, it was certainly articulated! We see it being articulated in so many ways!! In Max’s excitement upon receiving a letter from his friend Mary; at his concern for her well-being; at his interest in all aspects of her life; at his advice for her, and his loyalty to her, and his kindness towards her. We see it at his forcing himself to smile for her sake, and at his using her own tears to make himself cry. Even at his rage and disappointment when he feels she has betrayed him. These are all, unquestionably, beautiful articulations of love! Must we discard them merely because the word ‘love’ is not explicitly uttered by either party? Simply because Max may be unaware that this – this precisely – is what people speak of when they speak of love? Must Max be robbed of having experienced love merely because he was oblivious to the love he was indeed experiencing?

It doesn’t feel right. It doesn’t seem fair.

So let us pursue a different option: Max loved Mary, and articulated this love in his letters, and in this very articulation his love can be said to have existed. Love is relational – and in the relation between Max and Mary there was love. Even more so, the relationship between Max and Mary can be said to have been made of love, love being the proverbial stuff of which their connection was made. Love is emergent, so in every new letter, in every bar of chocolate, or a drawing of a pet, brand new shades of ‘love’ arose and expanded. With this perspective in mind, we can say love is the central theme, the driving force, of Mary and Max’s tale. Love is everywhere! And yet confusingly, frustratingly, we are told that Max “felt love, but couldn’t articulate it”. Couldn’t articulate it? That’s all he ever does!

It appears the logical conclusion would be to argue that Max indeed felt love, and indeed articulated it brilliantly, but was simply unaware that he was.

How can we make sense of this statement?

Love, like any such distinct emotion term, is socially constructed. But this is not to say that it is made-up, or in any way unreal. Not even remotely. Think of a building. A building is obviously constructed, but that does not mean it is imaginary, or in any way shabby, short lived, or inconsequential. It does imply, however, that it has not been in its current shape forever, and might not have been the same had circumstances been different. A Thai Pagoda is not similar to a Gothic Cathedral, though both are made of stone bricks. Moreover, the endurance of any construction ultimately depends on how well it is constructed; a well-constructed building can stand erect for millennia, particularly if it is made from quality bricks. And the precise nature, use, and overall shape of a construction depends on the historical and cultural context in which it was made, and in which it is currently being used.

If love is a construction, what is it constructed of? what are its bricks? They are the essentially human capacity to be affected in significant ways by one’s surrounding. Sounds abstract? It is. Strip love of its social, cultural, and historical significance, and you’re left with a strong feeling perhaps, but a feeling so vague that it is no longer recognizable or articulable.

If love is a construction, who constructed love? Generations of poets, authors, philosophers, theologians, scientists, readers, interpreters, parents, friends, lovers. Each employing the notions of their predecessors while adding their own ideas and experiences to articulate love in novel ways, which then subsequently accompany the concept of love further along.

And importantly, if love is a construction, what are its blue-prints and designs? What is its architecture? That would be the way love is framed, categorized into kinds, interpreted, and made sense of; the way it is valued and revered, glorified but also feared; the connotations it raises, the cultural references it builds on, the way it is typically exhibited, expressed, verbalized, and even experienced!

Stone is inevitable. But it can take the shape of a building in infinitely various ways. Similarly, our capacity to be affected is inseparable from our humanity. It is, also, inevitable. But this capacity can take the form of emotion in infinitely various ways. That’s what is emphasized when it is said that love is a social construction.

So where does this leave us? I suggested that Max was indeed feeling love, though he was unaware that he was not only feeling it, but was articulating it brilliantly. Now that we have conceptualized love as a social construction, or in other words, as the result of a collective social project, we may begin to understand why Max wasn’t aware that his relationship with Mary would normally be referred to as love; why he wasn’t conscious to the fact that he was articulating love; and why the language of love was said to be foreign to him. Being autistic, Max may have lacked what can be called ‘social intuition’; the capacity to effortlessly internalize such profound social discourses as gender roles, sociality, or indeed ‘emotion talk’.

In other words, seeing as love derives its meaning collectively, through the inherently social practice of language (verbal, written, or extra-lingual), one can be expected to be confused by it if one generally finds it challenging to intuitively understand other types of social practices.

“Its logic was as foreign to him as… as a salad sandwich” we are told of Max’s puzzlement of matters of love. So what is it about Max being autistic that created this gap between him feeling love and his expressed inability to articulate love? Emotions, it was said, are social projects, inter-subjective endeavors, where a term is infused with meaning that is then negotiated to the point of mutual agreement. When somebody says “I love”, they are not simply expressing outwardly a strictly internal ‘thing’. No, instead, by uttering the word love, they infuse this utterance with a history of social connotations, with a world of cultural significations; they infuse it with great meaning. This much is – in some way or another – intuitive for neurotypicals; which is why love, or any emotion for that matter, is indeed never really straightforward, but still relatively understandable. Neurotypicals are generally comfortable treading the murky waters of emotion talk. But not autistics, for whom this murk often proves too opaque and impervious.

Max was not aware that love can be articulated in giving a thoughtful advice, by placing a gift-pompom on top of one’s yarmulke, or by sharing a favourite recipe with a friend. Max did love Mary; but unfortunately, seeing as the meaning of ‘love’, in its typical use, is framed and indeed ‘coded’ by neurotypicals, its complex and nuanced meaning was lost on him.
I’ll end with a couple of quotes from Mary and Max that I simply adore:

(1) “I cannot express myself very clearly at this point, and so I will list my emotions, in the order they feel most intense: hurt, confuzzledness, betrayal, discomfort, distress, and wheeziness.”

(2) “When I received your book the emotions inside my brain felt like they were in a tumble dryer, smashing into each other. The hurt felt like when I accidentally stapled my lips together. The reason that I forgive you is because you are not perfect. You are imperfect, and so am I. All humans are imperfect.”

Mozart and the Whale

I was never a big fan of the romantic comedy genre. While some of these movies are often admittedly entertaining, they always leave me feeling a bit cheated. I do enjoy myself; I laugh, I get emotional, I sympathize with the characters, and I’m often completely engaged with the protagonists’ relationship, rooting for its success. But then, as the movie draws to its inevitable happy ending, I start to question the credibility of this whole thing. I start to reflect critically, and usually realize that the story was a bit too… much; the breakups too dramatic, the gestures too grand, the female protagonist too stereotypically cute, the male protagonist too stereotypically charming, and their love way too unreasonable. I then regret actually having been made to feel something, wasting sadness or sympathy on such an obvious falsity. I even feel I was cheated into laughing – odd as that may sound – because (except for in the first 20 minutes or so, where the jokes are usually quite good) it’s always that kind of laughter that stems from being surprised while overly emotional; like in Pretty Woman when Julia Roberts bursts into laughter when Richard Gear hands her the diamond necklace and then shuts the box abruptly. It’s not really funny – unless you’re four – but you laugh anyway. “What did I go through all that for?” I think angrily. What did I gain? I feel duped! Give me back my 1 hour and 45 minutes! And more importantly, give me back my cynical faith in the inherently pessimistic and sarcastic nature of the human spirit.

Well, that was pretty much how I felt watching Mozart and the Whale.

But I have to say, that’s not all bad. See, I’ve been learning about autism for a while now; reading personal memoirs, papers and books in the humanities and social sciences as well as studies in the natural and medical sciences. Reading articles in popular media, and watching documentaries and lectures – as well as movies and series. And autism, I found, is almost always talked about in this earnest austerity; like it necessarily warrants a very grave face, the one you would wear at a funeral. (Example: recently I applied for a research grant for an ethnographic study on emotional experiences in autism. The reviewer rejected my proposal for what I thought were entirely unfounded reasons, ultimately suggesting that I might modify my research to focus on ‘distress’ as a main theme. Why distress, I wondered? Why not love, pride, aspiration, or attraction? Why assume that the only way to talk about autism is through negative prisms?) Yet at the same time I also know autistic people; and our conversations are rarely austere. We share laughs, enlightening discussions, as well as mind-numbing chit-chat (alright, not so many of the latter). Sure, sometimes difficult experiences are talked about, where earnestness is indeed in order. But it’s not my impression that that’s the norm. It is not the only way to talk about autism.

Anyway, I found watching Mozart and the Whale to be kind of a multi-layered experience. In the beginning, I enjoyed it tremendously; the writing is good (in that pristine yet banal sort of way), the acting is pretty great, and the whole thing is done really professionally – as romantic comedies usually are. So I laughed, I got emotional, I sympathized with the characters, and rooted for them. Then, as the movie was drawing to a close, I started getting a bit angry, as it dawned on me – like it always does in this genre – that I am being duped. Why did they break up? I understand they had a fight, fair enough, but to actually break up over a thing like this? (This applies to each of the three times they broke up). Why did Izzy get so mad when Donald freaked out when she rearranged his apartment? She did this without asking him, and he’s obviously into order and routine. How about some understanding on her part? And him, how about some self-respect? This girl plays with his feelings like a marionette. I’m not saying forget about her, because she’s really cute and all and he obviously loves her, but how about calling her out on her overreacting whenever he does the slightest thing to upset her? How about these two guys have a CONVERSATION between them? You know, actually TALK about what’s bothering them? That’s kind of a major thing in relationships (for a fantastically angry and eloquently written review of the film check out this post by Caroline Narby).

But then, I was overtaken by yet another feeling, and that’s the one I’m still carrying now; it’s actually pretty cool that a movie where all the characters are autistic, and where autism is the main theme (well, aside from love; it is a romantic comedy after all), is made as just another movie in a genre. Not trying to educate, not trying to scare, not trying to draw a meaningful lesson on human nature, not even trying to promote tolerance or acceptance (not that there’s anything wrong with that); just another romantic comedy, where the characters happen to be autistic. Obviously, as far as representation of autism goes, it’s got its flaws (again, check out Caroline’s review). But still, this movie makes you want to put politics aside, and just say “hey, I just moderately enjoyed a mediocre movie about autism, without it antagonizing me by making a huge deal out of itself”. That’s a nice accomplishment I think. Maybe it even does teach a valuable lesson; sometimes autism is not the most important thing in autistic people’s lives. Sometimes it’s just something some people have to live with, while busy with work, errands, family, and relationships; in short, while occupied with living their lives.

Anyway,

I want to talk about one specific event that happened to Donald and Izzy. When Donald’s boss comes over to their house for dinner, Donald asks Izzy if everything could be ‘nice’. Isabelle interprets this (probably justifiably so) as a request that they act ‘normal’, and that makes her upset. She responds by acting – well, I’m not sure how to describe her behavior, as she’s not being herself, but not what you would stereotypically refer to as ‘normal’ either. She basically goes out of her way to make both Donald and his boss feel uncomfortable. Which I found was quite rude, seeing as he did ask her nicely and this dinner means a lot to him. Why not just tell him you were hurt by this request and that you refuse to change your behavior for his boss? That’s a very legitimate stance. Instead, she chose to act all awkward and bizarre. Anyway, that’s not my point. My point is that this scene, I think, offers an opportunity to reflect on what seems to be a very dominant theme in the lives of many autistic people. The notion of normality, and the demand that autistic people either embrace (mimic) it, or reject it, or do both alternately.

An important concept that will help us discuss this matter is ‘discourse’. Basically, discourse refers to any loosely connected cluster of texts, written or spoken, that subscribe to a certain attitude or perspective towards a particular field or domain. For example, you have the gourmet discourse, where unique and delicate tastes, textures and smells are glorified; then you have the health discourse, with its emphasis on nutritious consumption, breaking food down to its dietary elements; and you have the vegetarian discourse, which infuses food-talk with notions of morality and conscience. Clearly, these aren’t the only discourses on food, nor are they mutually exclusive. In this sense, bringing up ‘discourse’ is more of a working tool than it is in any way an objective descriptor of reality.

Similarly, there are different discourses on autism. Again, these are not mutually exclusive, and are very far from static; instead they are fluid, dynamic, and contested; reality is never so simple that it can ever be accurately sketched with such ease. But this sketch is still useful to appreciate the various influences that affect our understanding of things. Broadly put, there are two main discourses on autism, which are mostly in opposition with one another. On one side is the biomedical discourse, otherwise referred to as the deficit model, which views autism as essentially a disease, impairment, or disability. It seeks to find the causes of autism; trace its genetic, neurological, or cognitive mechanisms; find cure or treatment; subdue autism; alleviate its symptoms, and ultimately normalize autistic individuals. Medical professionals, as well as researchers in genetics, neuroscience, or psychology are usually prone to this kind of discourse (also promoted by various types of organizations), which they, in turn, reproduce and reify.

On the other hand is what’s usually referred to as the neurodiversity discourse, or the social model. In this discourse, autism is not seen as an impairment but as a difference, a form of human diversity. The autism traits (the equivalent of what the biomedical discourse refers to as symptoms) are considered ontologically inseparable from the autistic person, and thus there is no desire to be rid of them, lest the person him/herself will simply cease to be. This discourse emphasizes the role of society and its institutions in the disabling of autistic people, by way of marginalizing, silencing and othering; punishing for atypical behavior; and glorifying normality while devaluing difference. Instead, according the social model, society should be more accepting and tolerant towards all forms of diversity, including autism.

So you can see how normality is a central sticking point in discussions about autism. The very acceptance of such a thing as ‘normality’ – as an absolute and a positive – will most likely lead one to accept the biomedical discourse. Alternatively, leaning towards the neurodiversity model will unavoidably drive one to reconsider what ‘normal’ might actually mean, to the extent of arguing that there is really no such thing – or at the very least that there shouldn’t be.

Except, of course, there is such a thing as ‘normal’, because we all use it. We all know what the word means. So the question to ask might not be ‘does normality really exist?’ but rather ‘what sort of power dynamics do current notions of normality reflect?’ What ideology is served when ‘typicality’ is rearticulated as ‘normality’? What institutions will have trouble justifying themselves once ‘normality’ is readjusted to include autistic behavior? And how are people’s lives affected by the idea that normal=good, and abnormal=bad?

You might think that normality always existed. After all, what’s more natural and inevitable than drawing a line separating what’s normal and what’s abnormal? But this awesome graph illustrates just how recent, and therefore contingent and far from inevitable, our obsession with normality really is. The proportionate use of the words normalcy and normality has increased fivefold in literature over the last century.

Assuming that the possibilities for ‘being’ are infinitely varied, discourses constitute our best tool for tracing the influences that made people ‘be’ the way they ‘are’. They are a handy substitute for the still popular concept of ‘culture’, whereby it is often argued that it is culture that made you the way you are. Not that this statement is entirely wrong, it’s just terribly inaccurate. ‘Cultures’ are not homogenous; within any given culture there are hundreds or thousands of different available discourses which one can subscribe to; usually people subscribe to discourses which are most relevant to them in terms of age, gender, religion, ethnicity, social status, education, geography etc. Yet importantly, one very often has to make a choice – either conscious or unconscious – between different or even opposing discourses. Another alternative is to mix different discourses, taking just a bit of each.

With regards to autism, then, the choice is not so much between normality and abnormality; instead, as Nancy Bagatell, the medical anthropologist, has suggested in her 2007 article, being autistic involves a constant struggle to orchestrate two opposing discourses; the biomedical and the neurodiversity. Are my traits merely a form of difference, or are they symptoms to be subdued? If I wish to be alone, is that a valid choice or must I urge myself to seek company? In difficult times, should I fantasize about a cure for autism, or about a more just, tolerant, and accepting society? And mostly – should I lay my best efforts in attempting to pass as what others consider to be ‘normal’?

The conflict between Izzy and Donald is a marvelous example of this dilemma, primarily because the filmmakers do not suggest that any of these choices is necessarily right or wrong. Donald has a job which he loves, and therefore feels the need to impress his boss; this requires (presumably) that he and his girlfriend behave appropriately at dinner. Izzy, on the other hand, feels that her only way of getting by in the world is by not hiding her eccentricities, instead making them work for her advantage. Importantly, as the movie demonstrates, this is more than just an idle inconsequential decision; it affects relationships, employment, and social status. We, perhaps unfortunately, live in a world where appearances matter. I would think that the choice of whether to act normally or not is never an easy one. Bagatell indeed suggests that this necessity to constantly orchestrate these different ‘voices’ in choosing who to ‘be’ is itself a source of much stress and anxiety in the lives of autistic people.

But on the bright side, seeing as what we’re really talking about is not ‘normal’ vs. ‘abnormal’, but rather this discourse vs. that discourse, there is room for change. Currently, the dominant discourse has it that there is just one way of acting that is considered normal and appropriate; but like any other discourse, this discourse is also susceptible to change. Hopefully, the day when ‘autistic behavior’ would not fall outside the remit of the norm; or otherwise, the day when normality, per se, would cease to be in itself a value – might not be too far ahead.

What do you think about all this?

P.S. Did anyone else think the scene where they all go to the bleachers, boys on one side on girls on the other, is a homage to that famous scene in Grease?

References:

Bagatell, Nancy. “Orchestrating Voices: Autism, Identity and the Power of Discourse.” Disability & Society 22, no. 4 (2007): 413–426.

Snow Cake

There are a couple of things I didn’t want this blog to be about, though I knew steering away from them will take some conscious effort on my part. First, I never intended for this blog to be a film review. I’m not particularly interested in discussing how good a film is, the quality of its writing or acting, the choices made by the director, or its production value. There is quite enough of that already, and I don’t feel especially qualified to talk about these sort of topics anyway. I like movies a lot, and then sometimes I see a movie that I categorically don’t like. I can probably analyze why this is, but to be honest, I prefer to just read a well-written review by someone else to set my mind at ease, and think “ah, yes. That’s what I didn’t like about this movie!” It’s not the most original way to reflect about a film, but why waste my energy articulating a position that’s already been articulated by others?

The second thing I didn’t want to focus on, for quite different reasons, is the representation of autism in film. See, representations matter; they play a significant role in shaping our view of reality; indeed, of shaping reality itself. When members of certain social categories (e.g. black, gay, Jewish or autistic) are routinely represented in a certain way, this creates stereotypes, which in turn leads to stigma. In other words, negative, wrong, or even just overly simplistic portrayals of autism in cinema lead people to hold false beliefs about autism. This has real-world effect, as autistic people inevitably have to deal with these false beliefs on a day-to-day basis. At the very least, this involves having to repeatedly correct people’s preconceived notions about them and their condition. At worst, it prevents them from finding employment, acquiring an education, accessing services, or forming relationships. Representations matter.

So why don’t I want to write about the representation of autism in film? Two reasons. First, other people do it better than I can; in fact, some do it brilliantly. Look up Stuart Murray for a good example. Murray is neurotypical, but there are also many autistic bloggers online who have a justifiable bone to pick with depictions of autism in movies; many of these blog posts are sharp, accurate, brilliantly articulated, and sometimes angry as hell. My input in that field is just not really needed. The second reason I don’t want to write about representation of autism in movies is because it will just deflect me from my real purpose, which is to employ movies where autistic characters are depicted to talk about other social and cultural aspects of autism, as understood by various social scientists, including myself. In order to do that, I actually want to suspend my disbelief, and take the on-screen portrayal as at least partly representative of reality, so that we can all discuss certain aspects of autism without being overly general or obscure, through a discussion about specific (albeit fictional) people and events.

So why am I telling you all this? So that you can appreciate my difficulty in discussing the film I just finished watching, Snow Cake. I had a hell of a hard time suspending my disbelief on this one, as every little thing in this movie just shouted out at me from the screen “this is fake! And poorly executed! And a terrible representation of an autistic woman, who appears to lack any depth, life experience, or ability to experience grief or come to terms with her own emotions!” Ehm. So you see my problem? Having a serious discussion about fictional people and events is fine. That’s what this series is all about. But having a serious discussion about fictional people and events which I don’t believe and think are devaluing to autistic people is quite another. But perhaps I’m being overly critical. After all, this movie does offer some food for thought. Let’s give it a shot. Meanwhile, for a spot-on review of both the movie’s quality and its treatment of autism read this excellent post from Bitch Magazine by Caroline Narby.

Linda (Sigourney Weaver), presumably in her 40s, lives with her teenage daughter in the township of Wawa in the Canadian province of Ontario. One day a car accident kills her daughter. If I seem to report this devastating event offhandedly, it’s only because this is pretty much how the filmmakers chose to portray this tragedy. We never see Linda receive the news of her daughter’s death, but instead we encounter her for the first time a few hours later, when Alex (played by Alan Rickman), who was driving the car at the time of the accident, shows up at her doorstep to explain and apologize. Amazingly, Linda appears rather unaffected by the news. She’s not apathetic, though; she displays anger (at her intruding neighbour), joy (at the toys which her daughter had bought for her minutes before the accident), and distress (at Alex’s wet clothes which threaten to contaminate her carpet), but no sorrow, grief, or sadness. One could say that such an unimaginably tragic occurrence as losing one’s only child takes time to process. That’s possibly true; except during the 1 hour and 47 minutes of the film, Linda barely displays any emotion whatsoever with regards to her daughter dying. Pretty much the only time she expresses any negative reaction at all to Vivienne’s passing is when she refers to her, in the past tense, as “useful”. She was “useful” to her. Her only child, who we later learn was her best friend, the one person who truly accepted her, who played and danced with her, who shared stories and snowmen and made-up words with her, was “useful”. Oh, and Linda is autistic. As if that explains it.

But I digress. I actually don’t want to focus on grief at all (mainly because, as Caroline Narby observed, Linda’s character never gets a chance to grieve, but instead the grieving is reserved for Alex, who barely knew Vivienne!), but on another, less explicit theme in the movie: Minutes after they first meet, and her autistic traits become obvious to him, Alex worryingly asks Linda “Are you alone here? … is anybody… I can stay with you for a couple of days”. Linda’s ability (or inability) to live independently is recurrently referred to throughout the film. I already mentioned Alex’s amazed reaction at her living alone. Her next door neighbor Maggie expresses her own concern: “She needs other people to do things for her, if not necessarily with her. Vivienne did all the boring stuff, what’s she going to do now?” While Linda’s father mentions, without solicitation, that he never liked her house and never felt at home there. “Linda always liked it” He says, “We bought it for her because she wanted to be independent”. In one of the very last scenes, while Linda was enjoying the snow cake Alex had made for her (any ideas what this snow cake symbolizes? Couldn’t quite figure it out myself), Maggie, following through on her concern, takes out Linda’s trash.

Independence is a problematic and laden concept. In general discourse, the ability to live independently is valued as a proof of a person’s general competence; it connotes worth, self-definition, importance, even meaning. Independence allegedly differentiates child from adult; burden from contributor; disabled from able-bodied. In autism discourse (among other discourses), independence is often equated with what’s come to be known as ‘functioning’; so that someone would be considered high-functioning if they demonstrate an ability to live independently, while those who allegedly can’t would be labeled ‘low-functioning’. The concept of independence in this regard has meaningful and tangible implications. It influences policy: resource allocation, housing benefits, education programs, service provision etc. In the more abstract and yet equally significant spheres of life, demonstration of independence is often a precondition for respect, for equal and humane treatment, for recognition of personhood.

But what does independence mean, anyway? What is “living independently”? Does anyone truly live in-dependently? And is that really what we should be striving for so passionately? Independence stands for not being dependent on anyone. I’m neurotypical, and I certainly do depend on other people daily, constantly, and I wouldn’t have it any other way. So yeah, I take my own trash out, but my wife doesn’t. She hates it. She wouldn’t freak out if she had to do it herself, but she definitely prefers that I do it. Bad example? Alright. I hate fixing the toilet. I hate the chemicals, the smell, the – well – stuff that clogged it in the first place. Also, I don’t know the first thing about plumbing, I’ll just mess it up if I try. I depend on other people to do that for me. Sometimes I have to pay for it. Sometimes I ask a friend to do it as a favor. Does that make me less independent? Well yes, probably, but so what? We all have those things.

We rely on other people to help us live our lives. If I had to butcher my own cow to make dinner (or grow my own beans, if you prefer it) I would freak out! Different people have different skills and different preferences; that’s why we have distribution of labor. That’s how society works. I was never referred to as being any less independent because I can’t raise my own lunch, and I was never complemented for my impressive independence when I took out the trash.

But that seems to change when disability is concerned.

Because people need to differentiate. We (as in members of society) need to determine the boundaries of what’s normal. Those boundaries are then naturalized and presented as fact. Namely; some dependence is ok, but too much dependence isn’t. Rephrase; ‘just some’ dependence is renamed ‘independence’, while ‘too much’ dependence is termed lack of independence. Now it’s all sorted. But how arbitrary is this?

Taking a step back – obviously some people are more dependent than others. My wife’s reluctance to take out the trash is nothing like Linda’s anxiety. People are not the same, but are infinitely different. Autistic people, by and large, need more assistance in various aspects of life than many neurotypicals do. And of course, among those on the autism spectrum, some are more dependent, while others are less. I’m not arguing with that – I think acknowledging this is a fundamental part of promoting acceptance. What I am arguing with is the arbitrary dichotomous division between independent (healthy / able-bodied / adult / typically male), and not independent (sick /disabled /child / typically female). This dichotomy does nothing but reproduce power dynamics, in which those who are apparently independent must assume responsibility for those who aren’t. Case in point – Maggie, driven by the very best of intentions, takes out Linda’s trash, which was traditionally Vivienne’s role. But Maggie never asks Linda if that is something she would have wanted. In helping her (and in a pretty rude manner, I have to say, not even saying hello as she enters her house uninvited) she creates a reality in which she (Maggie) is the powerful decision maker, while Linda is that week receiver of assistance. Similarly, Alex decides to stay with Linda to “take care of her”, without her ever asking! Is that really a legitimate choice on his part?

Friends can and do often help each other; they should help each other; but without resorting to this kind of power dynamics, which occur when one party in the relationship is regarded as less than independent.

Rosetti and colleagues (2008), following an ethnographic study which included participant observation and interviews with autistic individuals who type to communicate, made a similar point. These authors challenged notions of agency, independence, and capability in autism discourse, arguing that all people have agency and capability, although they might require very particular conditions to express their agency (by which they mean “the opportunity to initiate a topic or agenda, participate in a dialogue, move a conversation in a particular direction, interpret others, affect the person with whom one is in dialogue, make a point, interact as a peer, and be seen as a person with ideas to contribute and a personality to inject into the conversation.” 2008:365) Independence does not exists, they argued, since everyone is always interdependent. Following from this is that incapability is never a quality of an individual, but always an outcome of environment and context.

What would change in Snow Cake, had Linda merely been considered interdependent rather than (not entirely) independent? For one thing, instead of offering to stay with her in order to ‘take care’ of her, Alex would probably have inquired about what precisely Linda might need help with in her to-to-day; since it’s not much (presumably just taking out the trash), he could have easily stayed at a hotel. Linda’s father may not have been so surprised and resentful that his adult daughter wants to live alone; perhaps accepting this would have helped him to like her home, and actually enjoy spending time there. We don’t know why Vivienne went to live with her grandparents as a kid; we’re never given that information. I suppose someone decided Linda couldn’t take care of a child all by herself; fair enough (though like I mentioned before, no one ever does anything 100% alone. That’ why we have nannies, teachers, social workers, food deliverers, therapists, doctors and nurses). But how many alternatives were considered before the decision was made to simply separate mother from daughter? How would a notion of interdependence affect that decision-making process? Actually a very nice example of portraying interdependence in the film was when Linda asked Alex to come with her to identify her daughter’s body. That was – I thought – the most touching and convincing scene in the film, because yes – people can ask their friends for help, that’s absolutely fair and legitimate. Especially in such hard times. Her independence would not even slightly be affected.

Language shapes reality; it can divide people, reproduce damaging power structures, and hinder positive development. But it can also lead to positive change, help growth, and unite people. This is basically just another claim for the thoughtful use of labels.

What do you think? Let’s talk about this some more. Please share and comment.

	Jeremiah on Adam (2009)
	Ben Belek on A Smaller Mask
	ilonamennerich on A Smaller Mask
	routinesrantsandrand… on Mary and Max
	Kimberly Anne Smith on Lars and the Real Girl