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?

Playtime

Playtime (1967)

It was suggested to me recently that if I want to watch a movie that really sheds some light on what being autistic is like, then I should watch Jacques Tati’s 1967 Playtime.

Here’s what M Kelter from Invisible Strings had to say (this is copied from the comments section of my blog):

m kelter November 25, 2013 at 4:04 pm

…I’ll tell you one thing: I said there’s no film that assumes an autistic POV…in a way, that’s not quite true. There’s a film by French director Tati called Playtime. I’ve always felt that, on many levels, this film replicates my experiences of the world. The sensory experience…the presentation of “normal”…all of it comes from a POV that replicates how the world feels to me. If an NT wants to understand how it can feel to experience sensory overload…or how it can feel to be confused by non-verbal communication, by systems of normalcy…Playtime is a great experience. I love the film, but I also think it puts the viewer in a world that is warped, confusing, hard to process…it’s a world I am very, very familiar with. Anyway, instead of films that present autistics as these walking diagnostic manuals, I’d rather see more films like Playtime, films that assume a POV that pushes normal to the side.

Well, I took M Kelter’s advice, and I’m thrilled I did. What a ride.

Now, if you haven’t seen Playtime, I strongly urge you to give it shot. Granted, it’s not for everyone. It hasn’t got a plot – not in the conventional sense, anyway – and it hasn’t really got characters – again, at least not in the conventional sense. There’s really nothing conventional about this film, to be honest, but that’s exactly what makes it so magical. It’s an experience more than anything else – a trip, if you will. By ‘trip’ I don’t mean the kind you get from LSD. Or maybe, somehow, it’s exactly what I mean; the same sort of metaphor applies. You get a glimpse of a world experienced differently: sounds are accentuated; your sense of orientation goes awry; things are not what they appear; confusion ensues – even panic. Is this the sort of thing you were referring to, M Kelter, when you wrote that “it puts the viewer in a world that is warped, confusing, hard to process … a world I am very, very familiar with”? I suppose it is. And so as an anthropologist trying to appreciate the experience of what it’s like to be autistic, I relished the opportunity for this masterfully crafted glimpse at a different way of seeing the world; however short and artificial.

Now, for those of you who haven’t seen the film, I should probably give a brief description of what goes on there. Yes, I will be doing Jacques Tati a terrible injustice, because the experience of watching this film is precisely the sort of experience that just can’t be put into words. It is very much a visual and auditory journey, not a narrative. But I might as well give it a try.

The film is set in an imaginary “modern Paris”. Not the old city with its unique architecture and very particular charm. No, there’s nothing old in Playtime; everything is sparkling new. This city, which was constructed solely for the purpose of the film, is ultra-modern, by what I imagine to have been the standards of “modernity” in 1967, the year this movie was filmed. It depicts modernity gone mad, stretched to its absolute point of absurdity. It’s all glass and metal, right angles, spic and span cleanliness, and abundant technology. Tati makes a good job at not allowing his creation to be reduced to any crude or simplistic idea of good or bad; it is neither, really. It simply is. In fact, oppositions are a theme in Tativille; friendliness and alienation, order and chaos, dreariness and ecstasy are all present and are intermittently drawn to their extremes at varying degrees of simultaneity.

And the noise!! It’s everywhere and it’s relentless, it starts off as protruding from a distance, but gradually it’s made to feel ubiquitous and near, as it virtually becomes synchronized at some point, or so it feels, with the viewer’s own fluctuating hart rate. Roaring vacuum cleaners, buzzing intercoms, wheezing sofa cushions, pounding footsteps, beeping car horns, ear-deafening announcement speakers and screeching TV sets, and the list goes on and on… Oh and the chatter! The constant, rampant rambling, loud laughs and indistinguishable babbling are at times almost too much to bear. Also, Tativille and its residents are perpetually in motion – bustling roads and lively shops and escalators and elevators and construction work. Later, in the evening, increasingly frantic dancers and waiters blend in a less-then-perfect harmony, gradually seasoned by random drunkards, who quite naturally join in the seemingly improvised though endlessly complex choreography.

Utter disorientation is perhaps the hallmark of this film, as along with the protagonist Mousier Hulot, the viewer is ingeniously led to constantly wonder in confusion: wait – are we inside or out? That there – is that a wall, a door, or just an absence? Am I looking into this building, or is it merely a reflection of that other one? Are those people up there dancing to the music…? (No, they’re just taking a window apart) Is that truck going to pull-over or keep going? Are these people leaving or just standing up to say hello to friends? Is that desk an item for sale or is it a functioning desk in an office? Do I recognize this person from before or is it someone else entirely? What language is that person speaking? Is he speaking to me? Where is everybody gone? Where on earth is this film headed??

I could go on. There is so much more to Playtime. So many astute observations on the various layers of absurdity in modern urban living; on divisions and their breaking; on the fine, almost invisible line between intimacy and estrangement; on globalization, with its apparent effect of alienation, but the underlying reality that people will always be people, for better or worse. Their behaviour does take very different forms, though; because the environment matters, and our interaction with it affects us, often in ways that are unpredictable to us, but that make sense nonetheless.

Well that’s enough of that. That’s all I can do to put into words what was in fact never meant to be worded. Just watch the film. I don’t think you’ll regret it.

So let us get back to the issue at hand – what has Playtime taught me about what being autistic might be like? What do I make of this film as an anthropologist? What’s to be learned?

As I implied a moment ago, I think Playtime can help us to understand the interaction between people and their environment; particularly those people who are more susceptible than others to being affected by their surroundings. But wait, are autistic people more susceptible then others to being affected by their surroundings? Well, yes, I suppose they are. We all experience the world through our senses. When our senses are enhanced or very sensitive, our experience of the world is likely to be affected.

Thus, it should be interesting to use Playtime as an example and ask – What effect do autistic people’s enhanced sensory perception and sensitivity – often to the point of it being unbearable, sometimes to the point of it being mesmerizing and pleasurable – play in their lives?

These are difficult questions. Social anthropologists often struggle to incorporate the body – in any form – into their analyses. Try and ask yourselves: What’s the role of sensory input in social structures, in social relationships, in social forces, in social dynamics? It has a vast influence, clearly, but isn’t it inevitably just a bit vague and elusive?

What’s difficult about this is that when we talk of senses and sensory input, or the actual ways in which the environment becomes inscribed on our bodies and brains, we almost inevitably wind up over-generalizing. After all, every sound is different. Every sight, every texture, every smell or taste is unique. Even if two sounds – identical in every measurable way – are played to 2 different people in different contexts, they will have different meanings, they will be interpreted and experienced differently; indeed, they will be heard differently. Every single sensory input is, in many ways, singular and unique. How can such a singular occurrence be incorporated into any sort of general theory?

And how can this even be framed within a social science perspective?

Well, the single most relevant concept that can help us to start making sense of these questions is what’s known as ‘affect’.

I will not presume to define affect; better men and women then me have tried, to varying degrees of success; and I’m not yet at a point where I can synthesize these often very varied framings of this concept to anything very coherent, or even intelligible, without this turning into a heavy-laden theoretical discussion, which would be grossly inappropriate for this platform (and not a whole lot of fun to write, either). Instead, I will toss around some very partial explanations of what ‘affect’, in the context of the social sciences, might mean:

Affect refers to the universal and innate human capacity to affect one’s environment (including other people) and be affected by it. Affect refers to that elusive sense of one’s body playing a significant role in the intensity of one’s experience of the world. Affect refers to the immediacy of interaction, that layer of it that has not yet been “contaminated” or thwarted by meaning, interpretation, or language. Affect emphasizes the singularity of any human experience, those aspects of it that can never be accurately represented, duplicated, translated, or reproduced. Affect refers to that constant sense of motion in one’s state of mind, mood or thought. It is that unnameable sensation that follows an idea, right before that sensation is translated into language to form just another idea. Affect is that which is inscribed on us through our senses in a way that makes a difference – whatever that difference may be.

Ah, I wish I could offer a more structured or coherent explanation. But that’s the whole thing with affect; by its very definition, it eludes structure and coherence. It is exactly that thing that language could never quite get a handle on, whether because it is pre-lingual, or extra-lingual, or simply ineffable. Affect pertains to those sensations we feel that we can never find quite the right words for. And the instant we find the words – the sensation is gone.

I don’t think I have ever spoken to anyone on the autism spectrum who hadn’t told me at one point or another about sensory sensitivities that they have. And this is never regarded as inconsequential, trivial, or insignificant. Quite often, in fact, sensory sensitivities are mentioned as the single most important aspect of living with autism. And it makes perfect sense, after all. Our senses are our window to the outside world; it is the media through which our environments affect us, right from the moment of our birth (and, indeed, even beforehand). It is the basis of all learning, of all knowledge, of all experience. So when our senses work differently, this is likely to make pretty much everything different. Social interaction, language, communication, control of one’s limbs, the sense of one’s body, preferences, emotions – it impacts it all.

Have I explained anything at all? No, I don’t believe I have. But by throwing these observations around, I am merely hoping to sow some seeds of understanding. You know, for later.

So allow me to end this post with a question for those of you on the autism spectrum: what sensory sensitivities do you experience? And more importantly, how do you feel these affected you throughout your life? Feel free to give one or two examples, or if you don’t mind, a lengthier answer will do perfectly. I genuinely look forward to hearing your replies.

Temple Grandin

Temple Grandin (2010)

Temple Grandin is probably the best known autistic person out there; to say that she’s a global celebrity would not be going too far. She has written several bestselling books, she is an extremely respected professional in her field, she is often cited and quoted in all sorts of discussions about autism (popular and journalistic, as well as academic) and she gives frequent lectures and interviews on various media. But maybe the most significant contribution to her celebrity status outside the autism community (and the cattle industry) is this 2010 film which is based on her memoir. The first time I watched this film was when it came out. I knew very little of autism then, and I have never met an autistic person (as far as I knew). And at the time, I loved Temple Grandin. In fact, I have a strong feeling that (warning: cliché) this film was one of the reasons that made me want to study autism in the first place.

I was slightly hesitant before watching it again earlier this week. Was it really that good, I asked myself, or was I simply too naïve back then? Won’t I be terribly disappointed? I’m a bit more knowledgeable about autism now, I’m a lot more suspicious, and I’m also a bit cynical. In short, I was afraid to find that Temple Grandin wasn’t half as good as I remembered it. And seeing as I know something now of the actual person who inspired this film (not personally, unfortunately, but from reading her books and watching her lectures), I was worried of finding that Hollywood – as it often does – had done her an injustice.

I was happy to find I was wrong.

I mean yes, ok, a lot was left out (obviously), and yes, the film came short of offering a complete account of the array of different aspects of autism (again, of course it would), but all in all, I felt Temple Grandin the movie is a beautiful, sensitive, and honest telling of a remarkable story about a truly exceptional person. As far as representations go, I thought the makers did a very good job. The autistic protagonist mostly makes her own choices, and while the love and care of those around her are framed as indispensable for her growth and achievement, these are acknowledged as secondary to Temple’s own intelligence, talent, and formidable sense of self-worth. The makers of Temple were not (as is often the case) rushing to spread some simplistic message about autism that downplays its disabling features, or reducing it to a generic form of mental disability that stands for weakness, dependence, or deficit. “Different, not less” was actually the film’s catch phrase, and the movie remained loyal to this message from the beginning.

In other words, I loved Temple Grandin. Possibly even more so now than when I watched it first.

Temple Grandin was born in 1947, merely 4 years after autism was named and identified for the very first time. In a way, her life story can be said to parallel the history of autism itself.

Often, when people think of autism, they imagine a sort of static quality that exists solely within the confines of the body. A biological condition that if not properly understood by science, it is only because we still lack in scientific knowledge; that the truth is still unveiled, but science is slowly and surely progressing towards this very goal. This is a somewhat narrow view of a much more complicated reality. Like any medical category, and perhaps even more so, autism is as susceptible to historical, social and cultural conditions as it is to biological processes in the genes or in-utero. After all, it takes people to recognize autism, define it, study it, explain it, treat it, experience it, represent it, and make sense of it. And those people come from different cultures, subscribe to different theories, value different methods of inquiry, and have different perspectives about what’s desirable, what’s normal, what’s important and what’s right. As time goes by, as society changes, autism, in a very real sense, changes with it.

Who are those people who arguably have so much influence over an apparently unbending neurological condition? Well, it’s quite a long list, actually. Neuroscientists of various sub-disciplines (cognitive neuroscience, neurophysiology, neurochemistry etc.), psychiatrists, and geneticists usually make up the group in charge of scientific research into autism, which obviously has a massive effect on how it is framed, categorized, understood and treated. Epidemiologists make a huge impact in determining and communicating the prevalence rates of autism. Psychologists are responsible for characterizing its cognitive and developmental aspects. There are speech therapists, occupational therapists and physical therapists who possibly know best which therapies work and which don’t (not that they are all in agreement). There are teachers in charge of instructing and educating autistic children and adults. There are those who provide welfare services, devise policy, and design legislation. There are those who advocate autism awareness and acceptance, and those who advocate the search for a cure. There are those who spend their everyday lives with autistic people, those who love them and know them best, namely their parents, siblings, partners, children or caregivers. There are those who write autism into books, make films, or write about it in newspapers and journals. There are those who study it from a humanities or social science perspective – like me. And ultimately, of course, there are those who are themselves autistic; living, talking, writing, acting, connecting, and making; they are sons, daughters, parents, partners, and friends; some are teachers, writers, researchers and artists; and they have significant influence on how autism is understood, treated, explained, experienced and even performed. Autism is therefore anything but static – it is as dynamic, fluid, and mutable as social categories get.

So wait, who are the real experts then? Well, they all are, but you know what happens when you have too many experts in one place. You get tension, disagreement, and conflict. And autism, with its myriad sorts of experts, is a fertile breeding ground for exactly that. In one of the very best books written about autism (on my opinion, that is), Gil Eyal and his colleagues, a team of sociologists, take a deep and thoughtful look into this field of contention, which they call (and named their book after) “The Autism Matrix”. Give it a read if you have the time. It’s not an easy read, but it’s well worth your effort.

Temple Grandin offers a wonderful insight into how these disagreements between the various sorts of experts come about.

The earliest scene in the movie, chronologically, depicts four-year-old Temple and her mother in a meeting with the doctor – most likely a psychiatrist. He diagnoses Temple as having autism. At that time autism diagnoses were scarce, and autistic children of Temple’s generation were very unlikely to be diagnosed as autistic. The clinician is thus arguably very well read and well trained, being familiar with such a “rare” new condition. Yet he still considers autism as interchangeable with childhood schizophrenia; this was an extremely common misconception at the time, and it remained common for decades more to come. Well trained as he may be, the doctor regards autism as hopeless and destructive. Temple will likely never speak, he says. It’s caused by a lack of bond between mother and child, he reproaches. And he recommends she should be institutionalized. The psychiatrist represents the common scientific perception of the time. He is an expert.

But Temple’s mother – a strong, educated, intelligent, and outspoken woman –rejects the doctor’s prognosis, and refuses to accept that her daughter will amount to nothing. She thus effectively opposes the psychiatrist’s expertise, and situates herself and her own understanding of her daughter’s condition – namely her own expertise as a mother – as equal, if not superior to that of the trained physician. Decades later, such opposition by parents will become widespread, as parents begin to collectively question the medical establishment’s approach to autism, its prognosis, and most importantly – its etiology. So that in contrast to what most experts claimed during the 1940s, 50s, 60s and 70s (and in some parts of the world still do), mothers knew they didn’t cause their children’s autism. It took a while for medical professionals to accept this as true – and nowadays, the fact that autism is innate is near consensus.

Another scene shows Temple’s team of school teachers frustrated by her behaviour. They consider expelling her. Only her science teacher realizes that her “bad” behaviour is not an integral part of her condition; but a result of a lack of support and care in the school environment. He takes it upon himself to mentor her, challenge her, and indeed love her. “Just a science teacher”, but nevertheless an expert in his own right, he has a huge positive effect on her life.

In college, a psychologist interviews Temple about her squeeze machine; utterly oblivious to the communication barrier between them, he asserts it has a sexual purpose, and forbids her to use it. Her mother, concerned of the impression that Temple’s use of her machine might create among her peers, follows suit. This time it is Temple’s aunt that insists that if the machine helps Temple, it must be allowed, and encourages her niece to devise an experiment to demonstrate that the machine is in fact helpful. The authority of the mental health specialist is thus undermined by a caring relative, who shows herself to be more of an expert then he is, at least in this regard. When Temple conducts her own study as to the possible benefits of her squeeze machine, a remarkable social process unfolds: she situates herself as an expert on autism not only by being autistic, but also by employing scientific methods to substantiate her assertions. The division between experiential knowledge and scientific fact is becoming blurred.

In the very last scene, we witness what is to become a revolution in autism expertise, as Temple’s own experiences, theories, ideas, and perceptions of autism and its meaning impress heavily on the conference participants, who very symbolically banish the “expert” speaker from stage as they ask her to take his place and speak in his stead. Autism self-advocacy is born.

It is important to remember that no type of expertise ever fully replaces another. Parents’ and educators’ expertise gained its rightful position alongside that of doctors and psychologists. Neurologists and geneticists (the more recent sciences) followed. Therapists and advocates, policy makers and social scientists, and not least autistic people all claim their right to make assertions, suggest theories, devise treatments, design priorities, and speak the ‘truth’. But truth is a problematic notion. One can never be sure that an objective ‘truth’ about autism can ever really be achieved. Instead, we are likely to witness an ever-lasting struggle between opposing or simply differently-focused discourses. A dynamic, ceaseless, complicated “matrix of expertise”, in the course of which the meaning of autism is never definitively unveiled, but is instead constantly negotiated.

Marathon

Marathon (2005)

Roy Richard Grinker is definitely one of the best social anthropologists out there to study autism. If you’ve never read Unstrange Minds – Remapping the World of Autism, I strongly recommend it; it offers a wonderful overview of the social and cultural context of autism, and it’s extremely well-written and engaging. Among other things, Grinker presents the reader with a picture of how autism is framed, interpreted, and understood in various cultures throughout the world. One of these is South Korea. So to me, Marathon was not only a beautifully made film about a topic that fascinates me, it was also a visualization of a world I was somehow already partly familiar with, and it made it all the more appealing. Anyway, in case I need to make it even more explicit – I loved Marathon. I thought it was excellent in so many different ways. Representations wise, it’s not perfect, ok. But honestly, when the protagonist is a barely verbal, quite severely autistic character, you always run the risk of painting a very specific, not necessarily representative picture of autism. But within the remits of their protagonist’s individual capabilities, he is a positive, well-rounded character, with personal coherence (so that his autistic traits don’t just ‘dissolve’ during the movie like in so many other films) – and that’s really all anyone can ask for.

Cho-Won loves animals; one of his favourite things to do, ever since he was a child, is watching nature documentaries on TV – and he knows the narration by heart. His absolutely favourite documentary is the one about the Serengeti Wilderness, an African region “uncontaminated by people”, where wild animals can roam free. He sympathizes not with the lions or cheetahs, but with the grass eaters, the animals of prey. He adores the zebra, which is a prominent theme throughout the movie. This reminded me of a point Temple Grandin often makes, about the similarity of experience between autistic people and prey animals, for both of whom fear is an overbearing emotion (what do you think about this?). According to Grandin, this shared experience is what allows her to understand cattle as well as she does – and she obviously does.

But Cho-Won’s love of Zebras didn’t lead him to become an animal behaviorist; instead, it mostly got him into trouble. Running away at the zoo, for example, or grabbing ladies’ purses or trousers if they happen to have a zebra pattern. Yet, in various stages of the film, his love for the striped animal also has benefits; he seems to understand motherly compassion, as he repeats the narration about the mother zebra caring for her cub; he understands danger, knowing that zebras can’t afford to stop running or fall over, as they will be eaten; he understand fear, sympathizing with the zebra’s constant need to look out and take care.

Understanding and expressing emotions are other themes common throughout the movie, and they’re articulated very carefully. “Your dad goes on a trip…” his therapist posits, “your mom is in the hospital … how would that makes you feel?” she shows him drawings of faces: “Happy? Sad? Angry? Scared?” His dad incidentally did go on a long trip, and his mother did lie sick at the hospital. The film seems to indicate that in some indirect way, these exercises have indeed helped him sort out his emotions. Also halfway in the film his mother teaches Cho-Won to smile, which he doesn’t quite get, until the very last scene, where he finishes the race, and his picture is taken. His running away at the zoo, in the beginning, was later recalled by him as a traumatic event, when he accuses Kyeong Sook of deliberately letting go of his hand, wanting him to run off. And his hesitant participation in the hiking trips with his mother evolved into a complex relationship between mother, son, coach, and long distance running, where prizes (choco-pies, medals) are awarded for success and the fear of pain (injection) thwarts defeat; this ultimately leads to the important and interesting dilemma that marks this film: whether Cho-Won enjoys running or was he numbed into passive submission by his mother’s constant pushing.

In Grinker’s writing and others’ about autism in South Korea, what stands out is the significant and often frustrating role of mothers; they are held responsible for their child’s autism; they are expected to subdue it, treat it, or at the very least conceal it; they must negotiate the diagnosis, often exchanging it for an arguably less stigmatizing (but false) ‘reactive attachment disorder’ (RAD); often, the concept of ‘border’ autism is used to frame the condition as uncertain, contingent, and temporary. Mothers of autistic children (adults too) are required to simultaneously be both assertive and respectful as they battle exclusion and discrimination in a society where individuality and defiance are frowned upon, and conformity is mandated. They need to ceaselessly explain, apologize, and excuse their children’s slow progress in school, in an environment where academic excellence is revered. To top it all off, fathers seldom take any part in caring for their autistic child, or negotiating his/her place in society. Yes, none of these problems is entirely unique to Korea; but this specific combination of societal expectations and limitations make the Korean “version” of autism quite idiosyncratic, and make the role of mothers challenging in very particular ways. It is apparently within this social context that Cho-Won’s mother faces the formidable challenge of raising an autistic child.

This blog, and my research in general, is not about the experiences of parents, siblings, caretakers, or children of autistic people. These are of course very significant. It is important that they are recognized and dealt with, and many researchers very successfully do so; but it was my explicit decision to limit my research, within reason, only to the experiences of autistic people themselves. However, Marathon represents a good example of one of those situations when the mother’s and child’s experiences become virtually indistinguishable. In fact, this is the very question the film’s makers pose: is running what Cho-Won wants, or is it what his mother wants? Is it him that can’t live without her, or her that can’t live without him? Was he upset by the coach’s unorthodox methods, or was she? Seeing as Kyeong Sook always had to make nearly every single life decision for her son, either big or small, how can one even tell what are his choices anymore? And is that really a valid question? In other words, can Cho-Won even make choices?

Still far from being able to answer these questions, I could try and suggest a way of approaching them.

Cho-Won’s mother struggles with her inability to determine whether he chooses running. She knows he likes zebras and choco-pies, meatballs dipped in ketchup and dancing in the supermarket. These preferences are easily communicated. What’s different about running is that it is painful (as his coach goes to great lengths to illustrate) and potentially dangerous. It is a more complex question than whether he likes choco-pies, for example, because running involves risk. Although she knows Cho-Won better than anyone, Kyeong Sook repeatedly fails at getting him to communicate his choice about running.

But perhaps we’re thinking about this all wrong; perhaps it’s not a problem of communication at all.

Usually, when one thinks of ‘choice’, one imagines an autonomous, individualized thought process, which might be influenced by the opinion of others (namely through advice and council), but is ultimately achieved within the bounded self. But is that really the only possible way to frame choice? After all, people make decisions in context. For example, a person is usually ‘ascribed’ with certain markers of identity at birth: gender, nationality, or ethnicity. Others are similarly innate (I use this word here sloppily) but are found out later, such as sexual orientation. Still others are considered to be personal preferences, such as political affiliation, hobbies, or an inclination to monogamy. But what if we don’t regard any of these as either purely ‘given’ or purely matters of ‘choice’; instead, what if we imagine choice as situational, whereas any ultimate state of being is a consequence of one’s environment, historical context, milieu, social expectations, and indeed some personal choice – this time in the traditional sense of the word.

Is being Jewish my choice? Choice has something to do with it, yes, because no one is forcing me to accept Judaism as my religion. But is it entirely my choice? Of course not. I was born to Jewish parents, grew up in an environment where almost everyone is of this faith, and I am expected by the people close to me to accept it. These factors aren’t the least bit marginal in the question of my choice of religion; they’re constitutive of it. You could say “yes, but if you decide to become a Buddhist tomorrow, that would be entirely your choice”. Not true. The only way that were to happen is if other social influences not only encouraged me, but also allowed me to convert to Buddhism – and that these influences would in some way overpower the former influence of my family and childhood friends. In that case, these new factors would have a significant share in “my” decision to convert. This is arguably true of any choice, large or small. Even my decision as to what to eat for lunch today would be affected by all sorts of influences; my upbringing, my cultural preferences, my budget, my grocery store’s inventory, and how much time I can spare to prepare lunch for myself. It’s never really just “my” choice, is it? Ok, you could frame it as ultimately my choice; but I propose a different perspective; that it’s partly my choice. Every individual’s choice is always just a part of the story of how things came to be.

Cho-Won may not have become a runner on his own accord. That his mother ‘pushed’ (a quite judgmental term) him into it obviously had a huge part in it. But who is ever unaffected by the decisions made for them by parents? And grandparents, and teachers, and political leaders and policy makers? Kyeong Sook may never get her son to articulate whether he accepts the risks of running marathons and chooses to do it anyway; and in no way am I implying that his desire is irrelevant or insignificant! But if he was given every opportunity to stop running, and kept at it; and if he enjoys the activity while he is pursuing it; and if he seems content with life in periods where he runs regularly; then his part of the ultimate choice to run seems more or less resolute. The question of whether it is his choice or his mum’s might simply be misguided; the choice is situational (a situation which includes Cho-Won’s communicational difficulties, among all other factors). It is both his and hers. The fact that he’s autistic, the fact that his coach believes in him, and the fact that he’s a good runner were all important parts of this. The circumstances seemed to have led him to register for running a marathon; but then again, actually completing it – well, that was entirely up to him.

The Story of Luke

The Story of Luke (2012)

Like several others of the films previously discussed in this series (e.g. Snow Cake, Adam), The Story of Luke also begins with the death of the autistic protagonist’s main carer. This similarity between the movies is not surprising, because they actually share something quite fundamental between them; in all three films, autism is not engaged with in any serious way, but instead it is merely a plot device. Here’s how they work: the main carer of the autistic person is dead; someone else must now take care of him/her, and cope with the difficulties this entails; that someone will now learn valuable life lessons thanks to this experience, and come out fulfilled, happier, and morally better. Along the way, the autistic person him/herself will rather magically overcome hitherto insurmountable challenges due to an extraordinary newly-acquired will-power.

But what’s the problem, you may ask. Wouldn’t inheriting a responsibility to look after a person with a developmental disability indeed be a huge challenge, so as to inspire a story worth telling? Perhaps. But then it’s not only autism, is it? The same is true for any other newly found, and not necessarily sought after, responsibility for a fellow person; an elderly parent that suddenly needs care, a badly injured relative, or a baby born prematurely. So why bring up autism? Why this puzzling disability and not another, more straightforward one? I suspect the reason why the movie makers chose autism is mainly for its potential for creative dialogue, unique acting mannerisms, and humorous rhetoric. The specific and particular circumstances of living with autism, both positive and negative, are never treated seriously. Ok; The Story of Luke is meant to be a comedy, I get that. But I happen to think that when a movie maker takes it upon him or herself to engage with a neurological condition, they need to actually have something to say about it, rather than using it to make some loosely relevant point (at best) about human compassion and people’s capacity for betterment.

So unsurprisingly, there are many problems in how autism is depicted in The Story of Luke, but one thing really annoyed me: out of all the ambitions and desires that motivate people to go out, to do stuff, to struggle, and to ultimately overcome – couldn’t the makers of Luke think of something a little more sophisticated than his desire to screw? His sole reason for wanting a job – and this is repeated constantly throughout the film – is to get Maria on a date and look at her “pretty breasts” again. If Luke weren’t autistic, we’d think he was an immature chauvinistic moron, and root for his failure just out of spite. So instead of using autism as an excuse for such a questionable ambition, why not just give him a proper motivation to get a job; like, I don’t know, to contribute to society, to challenge himself, to earn the respect of his family and friends, or to, you know, pay the bills and buy groceries? We’re meant to believe Luke wants a job so desperately simply because he eventually wants to have sex with a lady with whom he spoke once. I doubt that such a haphazard motivation would drive anyone to make such huge, life-changing decisions and overcome massive difficulties as he did – pretty as Maria’s breasts may well be.

But there I go again, getting all worked up about representations, when this shouldn’t even be what this blog is about. So once again, let us shed our disbelief, and instead follow the path paved for us by the makers of this film and see how, despite it all, we can use The Story of Luke as an inspiration to discuss some important issues about autism in its social and cultural context.

My favourite scenes in the film were the ones in which Zack (Seth Green) – who’s presumably also on the autism spectrum – shares with Luke his knowledge of neurotypical behaviour. He takes his study very seriously – he observes neurotypicals carefully, takes notes, and makes inferences based on what he sees. In more than one occasion he refers to his approach as ‘scientific’. He makes use of all the tools at his disposal, including computer hardware and software, to devise experiments and practice interactions. When Luke is taken on board as Zach’s student, they treat Luke’s attempts at socializing with neurotypicals in the ‘outside world’ as field experiments. This is reminiscent of many autistic authors’ experience of constantly trying to ‘figure out’ other people. Seeing as people with autism often lack the capacity many of us apparently share of somehow automatically knowing what people mean, think or feel, they need to apply a rational method to interpret human behavior. A ‘scientific’ method, so to speak. Temple Grandin succinctly compared this feeling of constantly being on-guard and always having to think and analyze people’s behaviour and actions to being ‘an anthropologist on Mars’. I wrote in a previous post about the alien metaphor commonly used in autism discourse. Today let’s discuss the other half of that statement by Grandin – the ‘anthropologist’ theme.

In my post about Mozart and the Whale I discussed the common issue of autistic people feeling pressured to mimic neurotypical behaviour and ‘act normal’ (with an emphasis on ‘acting’). But the scenes with Zack and his binoculars made me realize something that I was somewhat oblivious to up until now, or at least that I’ve never fully appreciated; that in order to mimic neurotypical behaviour, you first need to have a pretty good idea of what actually constitutes ‘neurotypical behaviour’. And, well, that’s quite a tricky bit isn’t it?

I remember reading in many memoirs and blogs by people on the autism spectrum about how, as children in the school-ground, they were looking at the kids around them; how strangely they were behaving, how inexplicable their actions often seemed. Similes such as ‘it was like they were speaking a foreign language that I just couldn’t understand’ are quite common. Indeed, aside from the aforementioned (and not a favourite of mine, as you may have realized) alien metaphor, the culture concept, stretched to its broadest meaning, is perhaps the best tool around to try and understand the sort of difference that autism brings about. The experience might be something like being in a strange land, not knowing – or even recognizing – the local language, habits, customs, and rules. I can only imagine the confusion and frustration one must feel, and the resulting sense of exclusion and solitude – as well as fear.

Except – what if you were to take it upon yourself to study real hard, and come to speak the language, habits and so on? That would certainly make things much easier wouldn’t it? You could make friends, fit in, and become a member of the group. Even if you’ll never be a 100% like ‘them’, at least you won’t be a total stranger any more. Well, not really. This might be true when different cultures are concerned, but it does not seem to be the case with autism. Like I wrote elsewhere, a neurological difference is grounded not in language, history, faith, or even the body – it is inscribed in the brain; and as such, it cannot (nor should it) be made to go away. A person can change their clothes, religion, surname, and accent. If they will it, they can even change their skin color. But they can’t change their brains. They can’t change who they are. That difference is there for good.

So what’s my point? It is this: Zach confused things. His honest attempts to learn neurotypical behaviour in order to mimic it was misguided. Mimicking may get one so far in certain situation, but from what I gather, such attempts too often result in utter stress, frustration, and an anxiety of being “found out” (though sometimes, unfortunately, these attempt just can’t be avoided – the social pressure to conform is simply to overpowering. Sometimes things like getting an education or employment depend – sad as this may be – on one’s ability to ‘pass’ as normal. This is not inevitable, of course. This is why political action is necessary). But then what about learning neurotypical behaviour, not in order to mimic it or pretend to be it, but purely to satisfy one’s intellectual curiosity, and to make some sense of what too often seems nonsensical; that might be quite a positive enterprise, wouldn’t it? Understanding those different from oneself, I imagine, could go a long way in assuaging fears, feeling comfortable around those Others, and feeling more at ease in their otherwise intimidating presence. It offers the safety of knowing your surroundings.

It’s also just really interesting. I mean hey, it’s essentially what I chose to do with my life.

So here, I believe, is something anthropology can really contribute to bettering the lives of autistic people – as it can be employed not just to the study of autism by neurotypicals (which is what I’m doing), but also to the autistic study of neurotypicals.

It’s long been held in my discipline that in order to be a good anthropologist, you need to leave your familiar surroundings. That’s the best – and some say the only – way to ‘stumble on every rock’, as it were; to be intrigued by what others consider mundane; to be bewildered by the otherwise banal; to ask questions that no one had thought of asking; to offer new sorts of explanations to phenomena mistakenly thought to be sufficiently-understood. When Zach observes the ‘mating habits’ of the office NTs, his potential for coming up with novel ideas about human behaviour is in fact much greater than if a neurotypical anthropologist would observe the same activities. For example, the fact he attributed such importance to the frequency and duration of eye contact obviously derives from the fact that to him (presumably), any eye-contact is an inexplicable activity. This puts him in the best of positions to try and explain this ‘odd’ behaviour – because it allows him to ask the most unobvious questions about what makes it so.

But importantly, while Zach’s curiosity is potentially very productive, his methods are entirely wrong. Observation might lead you to ask interesting questions; but it alone will never allow you to come up with any valid answers. In referring to office flirtation as a ‘mating ritual’ Zack makes a mistake that is common among non-anthropologists (or early anthropologists, or just bad ones) – the assumption that human behaviour is as predictable and patterned as animal behaviour. It isn’t. Human behaviour, much like humans themselves, is as unpredictable as it is complex. Affect, agency, performance, subversion, selfhood, defiance, creativity, cultivation – these are just a fraction of the concepts social scientists use when analyzing social behaviour in humans, in order to emphasize just how irregular it is, and how different ‘social forces’ are (if those can even be said to exist) from the laws of physics, chemistry, or biology.

If Zach wanted to understand the ‘ritual’ he was observing (namely flirtation near the water cooler) – he would have no choice but to come out of his office and ask the people involved what they thought was happening. Why did she laugh when he told that obviously unfunny joke; why did he look away when she looked at her watch; that sort of thing. He needn’t take their answers at face-value though – he’s absolutely entitled to make his own interpretation. That’s what anthropology is mostly about. But collecting their own thoughts and ideas is an invaluable first step. Without it, one never really has a chance of understanding other people. Without it it’s just guess-work, and you’re very unlikely to guess correctly.

“The institute for the Study of the Neurologically Typical” is a brilliantly articulated and witty example of what autistic anthropology shouldn’t be (it’s satirical, of course, and I’m just using it as a straw-man). It paints a grotesque image of neurotypical behaviour, that’s as invalid as it is funny. As a piece of social commentary, a satire – it’s brilliant. But this is not the kind of thing I’m proposing.

I wish we were all anthropologists – I honestly do. I think anthropological insight holds incredible potential for a better, more just society. But anthropology shouldn’t be taken too lightly, either, lest people are taken lightly; and that’s the very thing anthropology tries to avoid. In other words, be anthropologists, I urge you; it might just make things easier; behaivours might become less confusing, people might be seen as less strange, and the world a bit less chaotic. But be good anthropologists; take a course or several, read some anthropology introduction books, follow some anthropology blogs – do it right. Bad anthropology is often ridiculously bad, and is damaging more than it is helpful. Good anthropology, on the other hand, can be incredibly useful.

Is this what I was getting at this whole time? I sincerely doubt it. But I do like what came out. So I might just keep it.

What do you think about all this? I would love to hear your thoughts.

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.

Lars and the Real Girl

In a peaceful Northern U.S. town, Lars lives in the garage of the house where his older brother and pregnant sister-in-law live. Generally speaking, he lives a rather unremarkable life. Karin (sister-in-law) describes him on one occasion as “a sweetheart”. He really is. And yet, something about him does stand out. For one, he doesn’t go out much, except to work and church. He continually rejects his relatives’ breakfast invitation, using whatever excuse comes to mind. He is oblivious of his attractive female co-worker’s advances, or maybe he just acts as if he is. He’s shy, uncomfortable in social situations, and an all-around goodhearted guy.

His un-remarkability is put into question when one snowy afternoon he introduces to his bemused brother and sister-in-law his new girlfriend Bianca; an anatomically correct, human-size, marginally life-like doll he ordered from the internet and who arrived in a crate. To him, Bianca is 100% real. He has a delusion, his doctor/psychologist says.

I don’t know if Lars is autistic, and I’m in no position to say (who is?) To be honest, we are offered another perfectly valid explanation for his idiosyncrasies. He was orphaned from his mother at birth; he was raised by a depressed and anti-social dad (who may or may not have blamed him for his mother’s passing); his brother had admittedly ran away as soon as he possibly could, leaving Lars and his dad behind, only to return after the latter’s demise. That sort of depraved childhood is likely to leave its mark on any person, autistic or not. But then there is his enhanced sensitivity to touch, whereby he describes being touched as inducing an excruciating, burn-like sensation; which possibly means his is not strictly a psychogenic disturbance. Autism does not usually involve delusions (although according to these guys http://aut.sagepub.com/content/9/5/515.short, it often does – what do you think?). But just because someone is delusional does not mean they weren’t also autistic to begin with.

Anyway, having made a huge deal about autism not existing if it is not named in my previous post about The Bridge, this whole discussion is a bit redundant. What is the point of trying to diagnose a fictional character? It’s just speculation. I guess what I’m trying to say is – I’m not too concerned about whether Lars is autistic or not. But I do want to talk about the movie. So for the sake of argument, say he is autistic. Fair enough?

Autism is very often thought of in terms of a social disability, social impairment, social deficit; autistic people often describe difficulties in initiating social interaction, maintaining social relationships, interpreting social cues, or adhering to social norms. All these said difficulties have one very obvious thing in common – the use of the term ‘social’ to describe them. But what if we are simply using this term all wrong? What would happen if we just tweaked its meaning a tiny bit, so that it stands for something a little different? What if ‘social’ stopped referring exclusively to interaction between people, and used to refer to interactions in general? Suddenly, we get quite a different picture. Do any of the above claims still hold true?

Of course, this is not my own original idea. If I’m going to make such an outrageous claim, I’m going to have to lean on someone more authoritative than I. Bruno Latour, the French philosopher and anthropologist, wrote, “I think time has come to modify what is meant by ‘social’” (2005:2). His point was this: ‘social’ is not a thing. It does not denote any kind of substance that is essentially unique, and for which a distinct explanatory framework is required, and for which distinct laws apply. The term ‘social’, he argues, is merely a by-product of another – equally meaningless – term; ‘Natural’. When physicists, biologists, geologists and the like started going about accounting for all sorts of phenomena, they designated them ‘natural’. i.e., deriving from nature, independently of human actions. Sociologists then came along, and rightfully started wondering this: what about all those types of connections that can’t be explained using newton’s laws, osmosis, or photosynthesis? How should we account for the types of connections that occur between people, regardless, and equally independently, of said ‘natural’ processes? Such connections were designated ‘social’.

Fair enough. So what’s wrong with that? Well, that hardly any relationship, simple or complex, is ever purely ‘social’. For example:

Take the relationship between Gus and Karin. Theirs is quite unambiguously a ‘social’ relationship, right? They’re a married couple. Well, no, not unambiguously at all, because her getting pregnant by him was obviously a biological process, involving sperm cells, the uterine tube, the corona radiata, ooplasm, and an acrosome reaction – if any of these fails to function, there is no conception. And seeing as this pregnancy is an extremely meaningful aspect of their relationship… Would it have been the same if ‘biology’ hadn’t stepped in to do its part? Their relationship is based at least as much on biological processes as it is on ‘social’ ties. And yes, it relies also on physical, chemical, legal, linguistic, and a million other types of ties. Social is but one of them. That is, If you must insist on ‘social’ having any kind of meaning at all.

My point is that ‘social’ is never exclusive of ‘natural’. Latour is arguing that we don’t need these concepts that do us little good but instead only mislead us. Let’s forget about what’s ‘social’ and what’s ‘natural’; what’s actual and what’s imagined, what’s real and what’s fake; and instead let’s just talk about meaningful connections. Specific, traceable, significant connections.

Joyce Davidson and Mick Smith from Queen’s University in Canada read 45 autobiographical works written by autistic authors, and found that in so many of them (approximately half), authors spoke of meaningful connections to non-human (or otherwise more-than-human) objects: animals, trees, flowers, hills, rocks, sand. Sometimes these connections were regarded as easier than interacting with people, hence more desirable. Sometimes they were described as making more sense, having more potential for growth and learning; they were said to be calming, relaxing, rewarding, enjoyable, fun. Davidson and Mick make a great point when they ask: why should we consider these connections as any less meaningful than if they were between people? Is it just because old-fashioned humanism would have it that way? Why not take these people’s accounts seriously? If they say these are meaningful connections, why not take their word for it? Latour would similarly say: if the connections are indeed meaningful (except he means in an empirical, non-subjective way, i.e., having a meaningful impact on real-world events), who’s to decide that they aren’t? By all means, let’s trace these connections. Let’s see what we learn!

Whether or not one morally approves of Lars’s somewhat unusual love affair (I admit I was shocked and embarrassed at first – I do literally get embarrassed for characters on film), one has to admit it did him a world of good. It changed Lars. It helped him develop a sense of meaning, self-confidence, self-esteem. It helped him regain trust in people. It made him happy. It made him whole. Bianca did all that! Insofar as she was the catalyst of this series of events, Bianca is an incredibly meaningful character in Lars’s life story – and of all the town’s people as well. She is an extremely significant actor in Lars’s life. Would this process have happened without her? No, it wouldn’t! Alright, did she MEAN to make it happen? No, of course not, she’s a doll. And yet, doll or no doll, she DID make it happen, through and through. Her relationship with Lars, their connection, made it happen.

Should relationships with non-humans (animals, plants, rocks, or inanimate man-made objects) be ignored? Should they be tolerated? Should they be discouraged? Should they be seen as psychologically perverse, morally questionable, damaging? Should they be seen as allegorical or symbolic? An extension, compensation, replacement? I suppose that by and large, the answer to all these questions is a resounding No. Such relationships should be taken seriously. After all, everyone has them. A favourite shirt, a beloved chair, a childhood toy, a cherished old car… Not to mention a pet. Such relationships should be respected. And when they are respected, maybe we get a somewhat different picture of what autism really is.

What do you think? Do you agree? Have you had similar experiences? Please leave your comments!

P.S., Lars says the exact feeling he gets when someone touches him is like when your feet have frozen from the snow, and then let to thaw too quickly. By the end of the movie, he shakes hands with Margo, gloves off, with great intent. Moral? Before, he was “frozen”. A human touch meant too much, too soon. Thanks to Bianca, he gradually thawed, and a warm touch doesn’t hurt him anymore. That’s nice, I think.

Bron / Broen (The Bridge)

What is it about serial killers that makes them such a popular topic for TV series? I can think of a number of reasons, but I guess the main one is audience’s proven love of gruesome and meaningless, yet often admirably photogenic acts of violence, accompanied by a somewhat shallow and sensationalistic exploration of the workings of the psychopathological mind.

Plus, it’s pretty much an ideal plot vehicle; you have the killer on the prow, the detectives on his tail (the killer is usually male), the innocent unsuspecting victims… It virtually writes itself! Well, except it’s often terribly superficial and silly. I guess that in order to write itself well, a talented team of writers is still a fundamental requirement. Now, while I personally don’t mind the graphic depictions of violence one bit (it’s just decent make-up work as far as I’m concerned), my wife is not a great fan of extreme close-up ultra-bloody murder scenes. It’s not so much the violence itself that upsets her – after all, some of our all-time favorite series are The Sopranos, The Wire, and Breaking Bad, none of which is in any way shy of violence– but it’s the graphics of the serial killings that bother her. And I get it. When Tony Soprano or Avon Barksdale kill a gangster, they shoot him and get on with their lives. Serial killing bad guys on TV tend to have more lengthy engagements with their victims, pre and post mortem. So anyway, while in our household watching a series alone – as in without each other – is considered a breach of confidence, I can get away with it as long as it’s about serial killers. Looking for a new one to watch, after having finished watching Dexter (loved it at first, then started really hating it, had to finish though), I came across Bron/Broen or as it was titled in English, The Bridge (meanwhile an American/Mexican remake has come out, as well as , apparently, an English/French one, but this post is about the original show) What a thrill! A fierce serial killer terrorizing both sides of the Danish-Swedish border, and a joint detective duo, Saga from Malmo and Martin Rohde from Copenhagen are out to get him. It truly is a wonderful series.

Saga Noren is first and foremost an amazing detective; a real bad-ass, but in that good way. Tough, fearless, relentless, bright, meticulous. Also blonde, attractive, and always in leather trousers, she is presumably in her mid-30s, and single. She is well respected by her coworkers, superiors and subordinates alike. She’s mostly well liked, it seems, though people always appear to have trouble figuring out what to say to her, how to react to her. That’s probably why she doesn’t have that many friends. She generally prefers to stick to rules, however unreasonable they may seem at times. She reports her partner for mild violations of protocol. She refuses to let an ambulance pass through a crime scene, despite the fact that it’s carrying a kidney on its way to a transplant surgery. When the rules aren’t written anywhere, that’s when things get really difficult for her. Saga can’t make out what’s wrong with having spent the night with her partner’s 18 year old son – nor does she realize why her colleague would assume this means they had sex. She does have casual sex with men she meets at a club – always the same club – but she’s not interested in having a drink with them, and she doesn’t really understand why that might make them feel awkward. She’s fascinated by the police profiler, who makes sense of their perpetrator’s actions and behavior using analytical tools. The murderer also fascinates her, with his systematic conduct and obvious intellect.

I absolutely loved The Bridge. I have grown too accustomed to watching American TV series, and I enjoyed tremendously the different atmosphere, different scenery, different nuances (nuances! I watched so much American TV I forgot those even existed!), different style of writing, acting, even editing. I admired the fact that the show speaks Danish and Swedish, two languages I hardly ever have a chance to hear, and embarrassingly, I could not even for a second tell apart. (This romanticization of what is to millions of people their everyday languages is obviously amusing to some, but I stand by that comment. Foreign languages just make you feel something.) The writing is absolutely brilliant, and while the realism of the plot could probably be up for debate – I’m certain people have already found a myriad flaws in it – I found the characters to be as reliable as TV characters get. I believed everything that came out of their mouths, whether in Danish or Swedish (I never knew which it was, anyway). But there was one character who stood out. That would be splendid Saga.

So, does Saga have Asperger’s syndrome? Is she autistic? That question is never answered directly. But as far as the creators of the series are concerned, I would bet yes. I’m certain the writers knowingly intended her character to have Asperger’s, and were constantly conscious of that when writing the show. I also know that the actress who played Saga (the extremely talented Sofia Helin) did some research on Asperger’s as preparation to the show, and acted her part accordingly (and quite beautifully done, I thought). But does that all mean Saga has Asperger’s? I honestly don’t know. Let me phrase the question differently: Were Saga a real person, who went to see a real-world clinician to seek a diagnosis for herself – would he or she diagnose her with autism? All signs point to yes. Seeing as Scandinavian countries have awareness to autism that is among the world’s highest, if Saga had been a real person, she would probably already hold a diagnosis. So problem solved, series Saga is an Aspie. Right?

Well, no, I’m still not convinced. Despite everything I just typed, I would actually say that series Saga – i.e., the woman we see on the screen investigating a series of murder cases – probably does not have Asperger’s. Why not? Because in this case, Asperger’s is the tree that falls in the forest and nobody’s around to hear it. To put it simply – If Asperger’s is not mentioned, there is no Asperger’s. In the reality of the show, Saga is an unusual person. She’s socially awkward, she doesn’t get subtle social cues, she’s not overly vocal, she’s bad at small talk, she’s not empathetic in the typical way, she’s quirky and she’s eccentric. That’s all true – so how is she NOT autistic? Well, because autism only exists when there are people around to call it that. And if no one ever does? Then autism simply does not exist. I’ll try to explain.

What’s a Social Construction?

Are weak arms a disability? Of course not, right? I mean it’s a trait – an impairment, maybe – but it’s definitely not a disability. Well no, not here and now. But say in an imaginary world where everyone’s a blacksmith, for example, so yeah, absolutely, people with weak arms would be quite severely disabled. And if in that world one of the blacksmiths happens to be a doctor, I bet he would diagnose about 1% of the people – those with the weakest arms – as disabled. There would be a label – let’s call it Badsmith Syndrome, on account of them being bad smiths (There would be self-advocates, however, who will resent the name because it’s degrading. Others will happily adopt that label and take pride in it, making it their own). The doctor would probably prescribe weekly push-ups. Which many would also resent, because, well, they have weak arms. It’s not their fault, they would say – they were born that way. Why shouldn’t society just accept that? Why change who they are? Indeed.

Mind, these people would not be disabled because of their weak arms. After all, they might be amazing painters, mathematicians, retailers, theologians, engineers, or nurses. In a different time and place, nobody may have even noticed their poor physical strength. They merely have a different set of skills that distinguishes them from the rest of the population. It is the context that makes them disabled (this idea is sometimes referred to as ‘the social model of disability’). Their weak arms is one thing; and while the label attached to it is certainly not unrelated, it does not inevitably derive from it either.

And it’s certainly not irrelevant or inconsequential. The label might make a world of difference in their lives – for better or worse. They might be stigmatized because of it, and assumed to be things they are not (weak of character, lazy, even stupid), but it could also help them organize, support each other, change people’s minds about them, show the world that they are capable of other things. They have become a group, possibly a community. Thus Badsmith Syndrome becomes a social category, as well as a medical one. It raises connotations, invites interpretations, arouses feelings, in bad smiths and typical smiths both. So did people with weak arms exist before the label was invented? Of course. But was Badsmith Syndrome a thing? No, it wasn’t.

(More about autism as a social construction in this post about Bertleby the Scrivener, the short story be Herman Melville)

Is deafness a disability? Quite clearly yes, right? But the thing is, a lot of deaf people wholeheartedly disagree with that statement. Many of them say that the problem is not with them; the fact that they can’t hear is secondary. The problem is that society excludes them by not working out alternatives for deaf people in the public sphere (such as an interpreter into sign language at parliament sessions, for example). If everyone in the world could sign (not such a huge deal, it can be taught in schools, right?), so deafness would cease to be a disability. It would still be a category, sure, but kind of like homosexuality is a category – or even left-handedness. Both were severe disabilities in the old days. Both aren’t any more (the latter can’t even be said to be a social category today – that’s how far we’ve come).

Another example: Before there were schools; before kids were expected to sit down on their butts for hours on end, day in and day out, and listen to a teacher talk about something that they couldn’t care less about; was there ADD? Were there kids with attention disorders? No, there weren’t. How come? Because some kids sat and read or listened, while other kids drew, danced, learned to box, sew carpets or build furniture. Whatever a kid did, they would learn, grow, and improve at what they were doing. Attention deficit disorder only exists because now ALL kids are expected to sit and listen. Some kids find that easy. Some find it very difficult. They do have ADD – I’m not saying that they don’t – but they have it because in our context, in our society today, to not be able to sit and listen is a disability (or at least a disorder). So they invented a name for it, devised diagnostic criteria, and started labelling kids with it. Hey, they even found a treatment that works, which is fantastic. But the fact that ADD results from a real biological neurological mechanism does not mean it’s any less of a social construction. Just like weak arms are a real, biological fact. It’s the context that makes weak arms, ADD, deafness or autism into a disability, rather than a mere difference.

Of course autism is real. That’s not the question. It’s just that if no one’s naming it as abnormal, if no one’s placing it outside of the norm, if no one is there to give it a name, study it, investigate it, devise treatments, search for a cure, advocate acceptance etc. – so no, in that world (not necessarily a hypothetical world – this is still the case in some places) it doesn’t exist. After all, autism is a fairly recent diagnostic category. It was identified by Leo Kanner in 1943, and took a while to “catch on”. Even for decades after, kids that would today be diagnosed with autism were diagnosed with schizophrenia, retardation, or were simply – as in the case of what we refer to today as Asperger’s syndrome – often just considered eccentric. Were those diagnoses wrong? No, they were spot on! For the time, that is.

(More about the history of autism in this post, about Temple Grandin)

So wait, Does Saga Have Asperger’s or Not?

My point is this: We (as a society) acknowledge Asperger’s syndrome as a category. We diagnose people and consequently label people with it. We devise treatments for it, and initiate education programs for people who have it. People with Asperger’s are expected to perform their Asperger’s in a certain way. Some of them oppose that – and come up with their own idea about what Asperger’s means, and how to perform it. They negotiate the category, the treatments, and the expectations. They negotiate the very meaning of the term Asperger’s. Even the question of whether or not one has it depends on where you live, how much money your family has and other such social factors. The person is the same person with the same traits – I cannot stress that enough. But whether or not someone has Asperger’s ultimately depends not just on the person, but on society as well.

And it’s not only where you live, it’s also about when you live! 30 years ago, Saga would not be diagnosed with Asperger’s anywhere in the world. Today, she wouldn’t be diagnosed with it in many parts if the world. And you know what? In the revised DSM (diagnostic and statistical manual) that came out this last May, Asperger’s was removed as a distinct category. That actually means that as it currently stands, no one will be diagnosed with Asperger’s ever again!

So Saga has all the symptoms to indicate that in a Western country in the end of the 20th or the beginning of the 21st century, she would be diagnosed as having Asperger’s. But the way I see it is this: in the reality of the show, unless a fictitious Malmö psychiatrist was featured who gave her a formal diagnosis; or unless references would be made by other characters to such a diagnosis, I prefer to think of Saga as eccentric, quirky, unusual, and brilliant. She has a successful career, she contributed greatly to society, and she’s awesome. Her life can’t be easy, what with her difficulties in figuring out people and relationships, but as long as she has people who care for her, and as long as society is tolerant towards her and accepting of her unique needs, she’s not disabled. She doesn’t necessarily need to be labeled as “having” anything, or even “being” anything, other than her unique self. Does that make her life easier or harder than if the diagnosis existed? Can’t really say.

Do you agree? What do you think? I’m curious to know. Leave a comment or two.

	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