Not allowed to have a small heart: Tourette Syndrome

Sometimes I feel ashamed to be close with my friends.
“How come you’re so distant? Just come over here, it’s no problem, you know.”
I’m not allowed to have a small heart.

(I am republishing a lot of my ‘legacy content’ from our PLOS Neuroanthropology weblog, which has been taken down, along with many of the other founding PLOS Blogs. Some of these, I am putting up because I teach with them. If you have any requests, don’t hesitate to email me at: greg (dot) downey @ mq (dot) edu (dot) au. I suspect many of the links in this piece will be broken, but I will endeavour to try to slowly rebuild this content. Originally published 16 May 2012.)

Gusti Ayu Ketut Suartini, a young Balinese woman, shares how hard it is to be close to her new-found friends; they have to remind her that they are not afraid of her unusual movements, grunts, strange facial expressions and unexpected tics, the symptoms of her Tourette Syndrome. She remembers too well how the neighbours in her home village made fun of her awkward tics, calling her ‘bird dancer’ because her odd movements – so out of line with Balinese norms of placid, graceful comportment – resembled Manuk Rawa trance dancers, possessed by spirits. The neighbours even suggested she might be suffering a kind of permanent possession by the spirits who only temporarily inhabited the dancers.

Photo by Artem Beliaikin on Unsplash

We meet Gusti, and see how her life is shaped by the way other people interpret her tics, spitting, and uncontrollable movements, in Robert Lemelson’s movie, The Bird Dancer. The Bird Dancer doesn’t show us Tourette Syndrome (TS) as a disease, or discuss its neurological underpinnings. Instead, the movie is an exploration of Tourette as ‘illness’: local, meaningful, social, demoralizing, and driving Gusti and her family to despair.

Using video collected over more than a decade, Lemelson tracks Gusti’s life with illness, discusses the origin of her suffering, her attempts to find ‘healing,’ and her own understanding of her condition. Eventually we see how, even though her disease is not cured and her symptoms persist, her illness can be partially escaped, including through several subtle interventions that Lemelson makes in her life. The trailer of the movie is available for general viewing and embedded below; the whole film can be purchased from Documentary Educational Resources or ‘rented’ from Amazon (if you’re in the US).

The Bird Dancer is one of six films in the series, Afflictions: Culture and Mental Illness in Indonesia. This post, however, focuses entirely on Tourette Syndrome and The Bird Dancer, both because the disorder is fascinating, but also because it’s Tourette Syndrome Awareness Month. TS is a source of fascination and amusement in the West, especially one of its rarest symptoms, coprolalia: inappropriate swearing or uttering of obscenities. But the condition is also a model disorder, both neurologically and neuroanthropologically.

Neurologically, TS arises from a complex interaction between developmental, neurobiological and behavioural mechanisms (see Jankovic 2001). Neuroanthropologically, TS is fascinating because, although it can cause minimal direct impairment to the sufferer in some cases, the condition requires the sufferer to manage an unruly nervous system and deal constantly with the social repercussions of the inability to abide by norms of personal conduct and bodily comportment. Tourette is, as neurologist and Tourettic Peter Hollenbeck (2003) writes, an ‘illness of the observer,’ afflicting carriers primarily through perception and interaction management problems by undermining the appearance of being ‘normal.’

In The Bird Dancer, we join local observers of Gusti’s condition. Rob has opted to keep the discussion in the video non-technical and minimally intrusive, leaving greater space for discussion, exploration and compassion for an individual trying to cope with TS in an inhospitable social environment; we gradually become accustomed to Gusti’s tics and see more clearly her desperation. The Bird Dancer shows us how Tourette symptoms collide with the interpersonal expectations of Balinese life, the social aspirations of one Balinese sufferer, and the resources of both traditional healers and biomedical practitioners.

Gusti is not alone in suffering from symptoms that are as much social as neurological; research on TS in the United States and elsewhere in the West highlight the challenge of living what Hollenbeck (2003) calls a ‘jangling’ life, managing a ‘constant problem of self-presentation’ posed by one’s own irrepressible gestures, trying to render these gestures semantically meaningless rather than stigmatizing, frightening, or even offensive (Buckser 2007: 256). Although the tics can be almost incapacitating in the most severe cases, many with TS have normal cognitive and psychological abilities (for an extreme example, see Guy D. Francis’ YouTube channel, including his ‘Tourette karaoke’, for firsthand discussion by a brave and very funny man living with severe TS and Asperger’s Syndrome).

Since 15 May to 15 June is Tourette Syndrome Awareness Month in the US, I thought that this post was particularly appropriate, especially as a bit of a come-back post for me (news on why I’ve been away sometime soon). Here in Australia, we’ve just gone through our Tourette Syndrome Awareness Week, which wrapped up on 12 May.

Rob Lemelson, Afflictions, & declaration of interest

Rob Lemelson is a psychological anthropologist and documentary filmmaker at the Department of Anthropology and the Semel Institute of Neurosciences of UCLA, as well as the founder of the Foundation for Psychocultural Research. Rob is also Director of Elemental Productions, which produces documentary film, and Vice President and Secretary of the Lemelson Foundation, established by inventor Jerome Lemelson to encourage creativity and innovation.

Lemelson said (in an interview with Ajay Singh) that he originally went to Bali as a psychological anthropologist to investigate claims that the prognosis for recovery from psychiatric conditions was better in the developing world than in wealthier countries (which I discussed in an earlier post at our old site):

My original project was looking at issues of outcome and recovery from severe mental illness, following the World Health Organization’s studies that people in the developing world have better recovery outcomes: If you develop schizophrenia in Bali, India or Nigeria, you’re more likely to return home and to work and have fewer hospitalizations.

Specifically, as the film guide for The Bird Dancer explains, Lemelson was investigating the Pediatric Autoimmune Neuropsychiatric Disorders associated with Streptococcal Infections (PANDAS) hypothesis (Tucker 2011: 3). The PANDAS hypothesis is a controversial theory that children with a genetic vulnerability can have an autoimmune overreaction to streptococcus that attacks the nervous system leading to obsessive-compulsive disorder or tic disorders, like TS (for more on the controversy, see de Oliveira and Pelajo 2010; Robertson 2011; Singer et al. 2011).

The videos in the Afflictions series, instead, are a longer-term outcome of Lemelson’s research in Indonesia. Rather than focusing primarily on the question of prognosis or disease etiology, the series explores from an intimate perspective, up close and sometimes painfully personal, how individuals live with mental illness in Indonesia. Because of this long-term project, The Bird Dancer, like the other videos in the series, was difficult to put together. In a review of three of the Affliction videos, Karen Nakamura (2011: 656) recognizes the challenge, but also Lemelson’s achievement: ‘Because the films are a compilation of research footage as well as contemporary material, some of the editing is a bit choppy with temporal continuity sacrificed for the narrative arcs.’

Nakamura points out that Lemelson ‘appears in the film both visibly and through voiceovers that are more reflexive than didactic.’ I found Lemelson’s voiceover and presence on screen minimal and non-intrusive, helping to explain the narrative, but also a bit awkward, almost as if he would prefer not to have to be there. His discomfort, however, matches his subjects’ reticence, their difficulty talking openly about such private, embarrassing conditions, or about mental illnesses that are simply difficult to understand, and the likelihood that some of what they are saying is being voiced for the first time. Some of the awkwardness also arises because the people Lemelson interviews defy a Western audience’s expectations for self presentation, as the film guide provided for the movie cautions:

Some viewers of the film may be surprised to notice Gusti or her family members smiling as they speak about sad or stressful matters or when they are in uncomfortable situations. As a caveat, this demeanor should not be interpreted as her family not caring about her situation or as them actively laughing at her. Rather, it may be seen as the expression of a Balinese approach to emotion management. Balinese people generally strive to maintain a pleasing and bright appearance, even in situations where they may be internally experiencing sadness, strife, anger, or physical pain. Their attempts to appear cheerful include laughing and smiling during circumstances where other cultures might find it inappropriate or even rude to do so. (Tucker 2011: 8 )

The effect, overall, is poignant; smiling family members, at times suddenly choking back sobs or breaking into tears, in remarkably beautiful surrounds, discussing the wrenching problems thrown up by mental illness. Beautifully filmed, and with surprisingly good music, these are not slick, funny or easy-to-watch videos; they stick with the viewer, in part, because they are so raw emotionally, uncomfortable, and even jarring in these juxtapositions. As reviewer Nakamura adds, ‘Even jaded students are sure to be captivated by the intensity of the images and the skillful storytelling’ (2011: 656). I agree. The spare voiceover and pace of the video allow the viewer to live his or her way into a life that is doubly alien for most: both culturally and psychiatrically a world apart.

But before we go further, however, I have to declare that this is not a blind review; I have a vested interest in promoting Rob Lemelson’s work, not only because of what he has done for me and my colleagues, but also because of what he has done for psychological anthropology in general. Rob’s a driving force in psychological anthropology, as his list of affiliations above suggests, through his own research, writing, and editing, but also because he organizes and sponsors so many activities through the Lemelson Foundation, the Foundation for Psychocultural Research (FPR), and personally. When Daniel and I were trying to pull together our conference on neuroanthropology in 2009 (which resulted in a book that will be out later this year), we received support from Rob, the Lemelson Foundation, and the Society for Psychological Anthropology.

Right now, I’m already counting sleeps until I get to go to the 5th FPR-UCLA Interdisciplinary Conference: Culture, Mind, and Brain: Emerging Concepts, Methods, Applications, in October (more on that as it gets close). Because of my home university’s new absurdist travel policy (file under ‘perverse incentives’), I would not be able to attend without Rob’s and the FPR’s support.

So I owe Rob. I don’t normally do video reviews. Hell, I don’t normally go to movies. But if every psychological anthropologist with a practical or intellectual debt of some sort to Rob refused to review his work, you’d be knocking out a fairly large chunk of the people who could discuss the Afflictions series.

Tourette Syndrome: An ‘illness of the observer’

Georges Gilles de la Tourette, who undertook advanced study at Jean-Martin Charcot’s clinic in the Salpetriere Hospital in Paris alongside Sigmund Freud, first described nine patients with the condition that would bear his name in 1885. He didn’t ‘discover’ the disorder; the Marquise de Dampierre, the first case, was described by Itard in 1825. The Marquise was especially noteworthy because her coprolalia was so incongruous with her noble birth. According to Wikipedia, her most common epithets were ‘merde’ and ‘foutu cochon’ (‘shit’ and ‘filthy pig’). The Marquie de Dampierre case established a pattern that the paradigmatic cases of TS had the most spectacular and exotic symptoms: uncontrollable barking of obscenities, violent gestures, self harm and odd behaviours like echolalia, or the tendency to repeat what others say.

In fact, coprolalia is quite rare; only 10-15% of all Tourette Syndrome sufferers in the United States have the symptom which so captivates public imagination. In Japan, only 4% of those with TS have coprolalia, although the frequency can go much higher in some contexts; some samples suggest rates as high as 60% (see Lemelson 2004: 51). Gusti has coprolalia, at least for a while, distressing her family by calling out ‘bastard dog’ and other obscenities at inappropriate times.

But, as neurobiologist Peter J. Hollenbeck, diagnosed with TS in adulthood, writes, the visible and audible tics are just the outward sign of the internal experience of Tourette urges. He suggests that these explosive tics and vocalizations provide the portrait of a disorder that is more complex to the person living it:

The most common neuropsychiatric illnesses command our attention and challenge our imagination so deeply that they inspire popular metaphors. There is the dismal gray cloud of depression, the debilitating fire-and-ice of bipolar disorder, the waking nightmare of psychosis. But off at the edge of public awareness, out in the satellite parking lot of clinical attention, sits my personal affliction, Gilles de la Tourette syndrome. If it requires its own metaphor, I suggest something like “the car alarm” of neuropsychiatric disorders.

The sounds of this alarm, the outward symptoms of Tourette, consist of abrupt, repetitive physical movements and the production of sounds that in rare cases rises to the blurting out of words. From the moment in childhood that these movements, called tics, arise, their nature, frequency, and intensity vary in a bewildering progression. The less apparent, internal symptoms involve the buildup of sensations and urges that precede and impel the tics. Tourette is odd enough that some writers have afforded it an idealized, vaguely romantic treatment; it is startling enough that stand-up comics and B movies present it in ribald caricature. This abrupt, twitchy, bone-rattling condition has been my constant companion for as long as I can remember.  (Hollenbeck 2003)

The chief symptom of Tourette Syndrome, according to the DSM-IV, is a persisting pattern of multiple motor and one or more verbal tics which occur in bouts, many times a day. The number, frequency and complexity of the tics change over time, and appear to respond both to situations like stress and to suggestibility, but must last longer than one year to meet the diagnostic criteria (Robertson 2000: 427). The nature of these tics can vary quite a bit. For some, the bouts of tics can be so rapid and severe that they are practically immobilized; but for others, the tics are subtle and those with TS become so adept at managing them that they can go undiagnosed for years, as Hollenbeck did. Buckser (2007: 259) details:

Physical tics range from simple muscular movements, like eye blinks and shoulder rotations, to complex movements of the face, body, and hands. Oral tics range from peeps, whistles, and throat clearing to the repetition of specific words or phrases. Individuals vary greatly in the number, kinds, and severity of their tics. Not only does each sufferer manifest a different combination of tics, the combinations shift and change over time, giving every individual a distinctive tic history. Tics also vary in their visibility. Most are relatively unobtrusive, and some may be completely imperceptible to an observer, such as clenching of the back muscles or the larynx, or oral tics involving the drawing in of breath. Others, however, involve large-scale physical gestures like darting the hands about, touching objects or people, and hitches or skips in the gait, all of which draw attention.

A tic, however, is not an unconscious or uncontrollable movement, like a seizure. In certain situations – tired, stressed, or exhausted from trying to conceal their peculiar movements – a Tourettic may find that the tics become more pronounced, frequent, and urgent. But under the right circumstances individuals with TS can seek to manage, stifle, redirect or mitigate their tics. Hollenbeck (2003) describes how, for an hour-long lecture before 400 students, he can focus intensely and go without tics. But when he finishes, he writes that he feels like he is holding back ‘God’s own sneeze.’ Hollenbeck must retreat to his office like a dolphin coming up to breathe (his metaphor), to tic freely until the intense urge subsides, like a ‘terrible itch.’

It may seem hard to believe that they are all involuntary: a blinking eye, rotating head, flailing arm, a sniff, a whistle, a phrase muttered under the breath, a halted stride, a little hop. But they are. Don’t ask me to stop ticcing right now. I am a disciplined person who can run 30 miles, shovel snow for hours in the bitter cold, or go without eating for a couple of days. But on a morning like this, I cannot halt my tics, at least not for long. (Hollenbeck 2003)

Anthropologist Andrew Buckser, based on field research with Tourettics in Indiana, offers this explanation of the combination of compulsion with partial control:

It is not movement itself that is uncontrollable in Tourette, but rather the urge to move, the feeling that a movement must be made. A Tourettic who experiences the need to, say, raise an arm, will not find the arm shooting up against his will. Rather, he will feel a powerful urge to move the arm, an urge that can be relieved only by making the movement. The best comparison, and one often made by people with TS, is with a sneeze. A person who needs to sneeze must do so, and sooner rather than later, but the action can be repressed, at least temporarily, and the actor will have control over its form. This degree of control means that a person with Tourette can often defer a tic until it will go unnoticed, or else combine it with another movement so that it looks less like a tic. (Buckser 2007: 262)

Gusti’s brother asks her, begs her to control her actions, but Gusti describes this urge as being like ‘ants under her skin’: maddening and unrelenting.

The problem with TS, as Hollenbeck describes, is not the urge to act or make noise; the disorder is not debilitating or progressive. In fact, many sufferers of TS find their compulsions waning with age and, unless they have another psychological condition (and many do, especially obsessive-compulsive disorder and attention deficit hyperactivity disorder), does not necessarily cause any cognitive or health problems. Rather, Hollenbeck (2003) tells us, ‘In large part, the discomfort, annoyance, and intervention of onlookers are what make me a Tourette sufferer. If I have a tic and there is no one there to mock me, is it a tic?’

Managing observers of Tourette Syndrome

Tourette does not shorten life, limit mobility, or impair cognitive or emotional function. It does, however, impose a constant problem of self-presentation, a need to manage the confusing and misleading impressions that tics make on other people. While the genesis of TS is neurological, its most important symptom is semantic, the ongoing need to attach meaning to what are quite literally empty gestures. (Buckser 2007: 256)

Both Hollenbeck’s and Buckser’s accounts suggest that those with TS have to adapt to the ways that other people respond to their tics as much as they have to learn to adopt to the bodily tics themselves. ‘The result is a constellation of social symptoms (misunderstanding, deception, suspicion, and occasional embarrassment) that are as diagnostic of the experience of Tourette as the tics and vocalizations themselves’ (ibid.: 265). Buckser describes this problem perceptively as a ‘semantic’ one; the bodies of those with TS constantly send unintended messages to onlookers, messages that may provoke fear, bring stigma, or cause offense because of the way that they are read or understood.

Most individuals with Tourette Syndrome become quite good at concealing that they have the condition, becoming adept at providing alternative meanings to their unusual gestures and vocaliations. Using a combination of strategies that Buckser (2008) label displacementmisattribution, and contextualization those with TS seek to manage away the possibility that their unruly actions or vocalizations will lead to stigma, embarrassment or conflict.

With displacement, Tourettics seek out times or places where their tics will not be noticed, sometimes even during face-to-face interaction by carefully observing when it is safe to ‘release’ a tic. Buckser (ibid.: 176), for example, interviewed a judge who presided over cases for years while concealing his TS, finding ways to avoid onlookers in court noticing his tics by carefully observing sight lines, people’s attention, and how he positioned himself. Other subjects talked about dropping school supplies when in grade school so that they could tic under cover of their desks, or finding safe, secluded spaces to release tics where they wouldn’t be noticed at work. Hollenbeck retreated to his office; Guy Francis has to stay home, sometimes amusing himself by making karaoke videos when his coprolalia and other tics are debilitating.

In contrast, misattribution as a management strategy involved the individual with TS convincing onlookers that a tic was really some other activity; a bout of blinking was the result of an awkward contact lens, facial tics were covered by pretending to blow the nose, a head jerk was passed off as dodging an insect or suddenly noticing something. One subject worked as a cashier in a grocery store and passed off his tendency to touch his equipment frequently as a result of having obsolete, finicky equipment rather than a tic (ibid.: 178). He turned down an upgrade in his equipment because the old check-out computer provided such a convenient explanation for his tapping and other gestures.

Finally, in contextualization strategies, a person with TS will explain their actions, often by suggesting that they have a ‘medical problem’ (ibid.: 180). One factory worker who had been the butt of cruel teasing explained his syndrome to a co-worker over lunch; shocked to learn that he had been teasing his co-worker for a ‘medical condition,’ his co-worker called the shift crew together and explained TS to the whole group, bringing an end to treatment so harsh that it nearly caused depression. Buckser points out, however, that contextualization strategies pose their own costs: the TS sufferer must be willing, not only to teach others repeatedly about his or her condition, but also to be redefined by the condition. Redefinition includes running risks associated with having a ‘medical condition’ or ‘mental illness,’ or being considered ‘disabled,’ when many people with Tourette do not feel they are impaired.

In fact, the majority of Tourettics are so successful that the condition is much more prevalent than most people realize. Tourette Syndrome affects approximately 1% of children aged 5 to 18 years of age across cultures, although most cases in the United States, for example, are ‘undiagnosed and mild, without distress, impairment or coprolalia’ (Robertson 2011: 101; see also Robertson 2000). Because of comedic portrayals in the media, the American public, for example, often expects Tourette to be spectacular, jarring, and dramatic. The irony is that, because those with TS become so adept at concealing their tics, and the public expects TS to lead to outrageous behaviour, Tourretics’ ability to adapt and misattribute tics

subtly shapes the way that the larger culture sees Tourette. It submerges the small gestures and sounds that constitute the great majority of the disease’s symptoms into other categories, leaving the illness to be defined by its more florid manifestations. It makes Tourette seem to be much rarer than it is, to be a disease that ordinary people very seldom see—because when they do see it, it almost always looks like something else. (Buckser 2008: 178)

Especially in young people, many of the less dramatic cases of TS-related tics are ‘wrongly attributed to hyperactivity, nervousness, habits, allergies, asthma, dermatitis, and other conditions’ (Jankovic 2001: 1184). Experts on the disorder say that they frequently spot individuals with TS ‘passing’ in everyday life, managing so that their symptoms escape notice by non-expert eyes.

Although TS was long (and wrongly) thought to be very rare, the unusual mannerisms, facial tics, and compulsions of the syndrome, at the same time, have become signature marks of madness in the West. As Buckser (2008: 187, note 16) points out, in movies like The Pink Panther Strikes Again and Matchstick Men, actors signal that they are mentally ill by adopting an eye twitch, hallmark of TS. In Blake Edwards’ Pink Panther series, for example, Inspector Clouseau’s nemesis, former Inspector Herbert Dreyfus (played by Herbert Lom), escapes from an asylum where he is confined after being driven mad by working alongside the bumbling Clouseau. Dreyfus is steadily reduced to greater and greater madness, and more and more emphatic twitching, by his inability to kill Clouseau, so that, at the end of the movie, he is simply a single twitching eye (the whole story involves a doomsday weapon, … look, the point is not that it’s a plausible scenario, only that it’s meaningful to the audience). Similarly, one of the most obvious portrayals of TS in a popular albeit painfully bad movie (at least according to online search) is ‘Ruth,’ a woman with TS and severe coprolalia, played by Amy Poehler, in Deuce Bigalow: Male Gigolo.

So TS symptoms are hallmarks of ‘madness’ in Western imagery at the same time that those with TS, far more common than the public realizes, are experts at concealing most of their symptoms, except in those situations where it is simply impossible (some school children with TS, for example, report that the stress and expectation of complete silence in exams make these settings a nightmare for self management). Because of the stigma attached to the most dramatic signs of Tourette, those who can ‘pass’ or conceal their condition do; society as a whole is left blinkered to just how widespread the condition is, and, at the same time, how well people with it are able to cope. For a neuroanthropologist, it’s a fascinating and utterly diabolical dynamic for those individuals with severe TS symptoms, as neurological peculiarity intersects and coping strategies intersect with public perception in ways devastating to some sufferers.

Having Tourette Syndrome in a Balinese village

When Gusti tells us that she is ‘not allowed to have a small heart’ near the end of The Bird Dancer, she speaks through a combination of tears and smile. We see her watch video of her own life – some of the same footage that we, too, have seen in the video– at a public screening, now from the position of a woman who has overcome much of the isolation, suffering and despair apparent in the early footage.

Gusti was born in a small rural village in Central Bali called Tengkulak, to a Kesatria, a high caste, family. In her own village, her Tourette Syndrome was inescapable, in large part because of the semantic confrontation between her symptoms and local undersandings:

Totally unfamiliar in rural Bali, Gusti’s Tourette symptoms elicited grave concern from herself and her family, significantly affecting both the daily and the long-term course of her life. Gusti has spent many years struggling to overcome the stigma and suffering that has resulted not primarily from her TS, but from the web of cultural significance spun around it in the context of Balinese values and belief, social and familial structure, and health care practices.

Over time it became clear to her family that these behaviors were out of Gusti’s control. This led to only more worry, however; Gusti’s jerky movements looked like those of trance dancers who are temporarily possessed by spirits in certain Balinese dances such as Manuk Rawa, or the Bird Dance. Neighbors started to openly mock her by calling her “the bird dancer,” and also began to worry aloud whether she had been permanently possessed and therefore was spiritually ill. Others in the village feared that her illness was contagious, and began to shun or avoid her. (Tucker n.d.: 1 & 2)

For Gusti, the semantic field in which her teeth clenching, jerky arm movements, spitting and cursing appeared – a rural village in Bali – made her burden especially heavy. Villagers did not know if she was acting up, making fun of them, crazy, possessed, contagious. Her siblings fluctuate between sympathy for their little sister and anger, because her condition stigmatizes all of them, makes it difficult for them to marry. Who wants to marry into the family, especially from an appropriate high caste, if one of the potential in-laws is so obviously and disturbingly impaired? Her family lashes out at her sometimes, her brother mimicking her uncontrollable movements, kicking her until she wets herself, she tells us.

In response, the family sought out traditional medical practitioners and healers (balians), some of whom diagnosed the cause of her condition as black magic, visited upon her because of her own goodness. Although the diagnosis may have offered some consolation, the treatments did little to stop the tics, the spitting, or the growing weight of stigma on Gusti. One healer that we see in The Bird Dancer finds ‘stones’ while painfully massaging her body; these stones are the traces of the witchcraft that have lodged in her body to produce her disorder like magical bullets. Like other healers – around a dozen we learn elsewhere in Lemelson’s (2004) writing – he promises relief, but Gusti isn’t confident; she’s seen too many healers by this time to hold out much hope.

The frustrating, seemingly futile search for a cure to a condition that threatens the entire family’s future produces tremendous stress, shame, and guilt, leading Gusti to contemplate suicide and exacerbating her TS:

Rather than her Tourette’s, Gusti was perhaps most troubled by her feelings of worthlessness within her family system and depression as a result of these ongoing feelings. In an interesting corollary note, there is a proven interaction between stress and tic behaviors; often tics will increase in frequency and severity when a person is under stress, and dissipate or even go into full remission when the person is relaxed or focused on a pleasurable activity. Therefore it is possible that the judgment and frustrating quest for a cure was actually exacerbating Gusti’s troubling symptoms. (Tucker n.d.: 13)

Photo by Ruben Hutabarat on Unsplash

Mental illness and healing in Bali

During his field research, Lemelson examined the efficacy of indigenous healing traditions for mental illness, a topic important to psychological anthropology. Lemelson shares that that he even ‘went to the field with the subconscious assumption that the different forms of traditional healing should be efficacious’ (2004: 67). He discusses earlier theorists, like Wolfgang Jilek (1993), who argued that, because meaning and social support was so important to coping with psychiatric illness,

traditional healing is at least as effective and frequently more so than modern medical and psychiatric approaches for a variety of disorders, including various mood disorders, psychosomatic and somatoform syndromes, acute or reactive psychotic states, and alcohol and drug dependence. He [Jilek] notes further that traditionally healed patients’ experiences are restructured through a culturally validated system of symbols and meanings; the perceived etiological act, agent, or person is identified and a course of remedial or protective action taken. Jilek believes that this naming process has significant therapeutic aspects and often causes symptom remission by itself. (Lemelson 2004: 52-53)

Lemelson (ibid.: 67) affirms that there are ‘numerous times and contexts in which traditional healing appears to be the most efficacious form of treatment.’ He singles out acute psychosis, for example, reporting that traditional healing is used frequently and to great patient satisfaction (ibid.: 71).

But what Lemelson found was also the ‘striking’ pattern that, in cases of obsessive-compulsive disorder (OCD) and Tourette Syndrome, sufferers felt a ‘lack of efficacy of traditional healers and the powerlessness of traditional healing to relieve their suffering’ (ibid.: 67). Of forty cases of OCD and TS in Bali interviewed by Lemelson, twenty had visited traditional healers. Seven had gone more than five times; and several had gone more than ten times, Gusti among them. Only one of the patients perceived any improvement from a traditional healer, and this respite was only temporary (ibid.: 68). Lemelson reports that preliminary results from a survey on TS in Java showed a similar pattern: traditional healing didn’t relieve symptoms or suffering (ibid.: 69).

Lemelson explains that, probably due to the neurobiological basis of these disorders, traditional healing, just like psychoanalysis, cannot reach the ‘underlying neurophysiologic bedrock’ (ibid.: 70). In addition, I would argue, traditional healers cannot produce an effective change in the community interpretation of Gusti’s symptoms in the Balinese context, nor can they provide her with a suitable social role where her unusual behaviour would make sense. The ‘meanings’ that healers provide, as Lemelson discusses extensively, do nothing to alleviate either the physical symptoms or those social symptoms that Buckser highlights, like stigma and derision.

But one of the more subtle scenes in The Bird Dancer, however, also allows us to glimpse how biomedical approaches to TS run up against local obstacles and fail to provide relief in Bali. Gusti sought help from neurologists and psychiatrists, some of whom prescribed medications that, although they blunted the Tourette symptoms, also depleted her energy, caused nausea, and made it hard for her to function. She gave up on the psychiatrists even more quickly than she gives up on traditional healers, who at least offer a variety of strategies.

Patients with TS in Indonesia are likely prescribed a neuroleptic, a dopamine-receptor–blocking drug like haloperidol.  The side effects that Gusti describes, including lethargy and depression, are common enough that many patients in the West also choose not to be medicated. But in the developing world, the pharmaceutical treatment of Tourette is complicated still more, as the film’s study guide explains:

However, there is a significant structural limitation that may negate the biomedical treatment for psychiatric disorders. Throughout the developing world there is trafficking and sales of counterfeit medication. Indeed, upwards of 50% of medications sold openly in pharmacies in Indonesia may be counterfeit. This means that the active ingredients are either present in the wrong amounts, contaminated, replaced by similar acting substances, or entirely missing altogether. It is probable that some of Gusti’s negative reaction to her medication was caused by her ingesting these counterfeit medications. (Tucker n.d.: 11)

In other words, both biomedical and traditional techniques fail to heal Gusti. She is trapped by the inevitable clash between her unruly nervous system and the expectations of the social world around her. When a kind young man seeks her hand in marriage, the family reluctantly turns him down because he is of a lower caste. When Gusti’s despair grows intolerable, her family locks the young woman up to prevent her from running away with her inappropriate suitor.

Alleviating an illness without eradicating a disease

In this impossible situation, we learn that Gusti resorts to escape. She flees her small village to the city of Denpasar, gets a job as a maid, earns her own income, and cultivates a new circle of friends, who she tells us accept her disorder, even though she still holds back and fears what they will think. As anthropologist Nakamura (2011: 655) explains in a review of Affliction,

Freed from the tyranny of small-village life, she is considerably happier even though medically her symptoms haven’t changed much. Lemelson muses in a voiceover that when he first met Gusti, he was initially concerned about her neuropsychiatric disorder and its symptoms, but he now recognizes that her family and her social ostracism were the true causes of her distress.

We see Gusti spend her own income, awkwardly board an escalator, talk on a mobile phone, visit her family, and hold hands with one of her new friends, who do not flee from her condition fearing that she might be contagious or dangerous.

Although Gusti, herself, and her new circle of friends must get much of the credit for her new ‘prognosis,’ Lemelson himself and the video project about Gusti also appear to play important roles. First, in the meetings with the research team, we see both Lemelson and an Indonesian psychiatrist trying to explain Tourette Syndrome to the family, who were at first so baffled by Gusti’s behaviour.

Then, Lemelson introduces Gusti to Dayu, another woman with Tourettes, but also with a university degree, a job, and a devoted husband, in addition. Dayu’s tics are more pronounced than Gusti’s; even when she is not under stress, Dayu cannot control the expressions that seemingly ripple across and stretch her face constantly. Dayu and Gusti talk in the video and, though they sit awkwardly at either end of a couch, we can see the back and forth of recognition. Gusti is fascinated by Dayu, liberated to talk about her own condition; and Dayu, eventually, cries as she hears how Gusti is treated in her village, by neighbours and a family who do not understand her peculiarities.

Although he does not emphasize his own role, Lemelson demonstrates through his own interaction how alleviating Gusti’s condition involves social action as much as treatment of an individual’s nervous system, first, when he explains the disorder and introduces her to Dayu, and, later, when he screens the video about her life to her own community, a scene that made me cry when I first saw it.

A screening was arranged in her home village, and we see Gusti arriving, almost clinging to one of her new tall city friends for protection. Arriving like a returning celebrity, Gusti’s steps are punctuated by the flash photographs taken by the event photographer. It’s hard not to see this as a kind of ‘red carpet’ film opening with immense heart. Afterward, as the researchers take questions in front of the audience with Gusti and Dayu, a local businessman stands up and admits that he has a friend with Tourette. He thanks Gusti and the video crew, saying that he did not know he could treat the friend as, well, normal.

Lemelson tells us in the voice over, however, that, with all her success adapting and finding supportive friends, Gusti has not yet married or had children. The absence of a partner undermines her sense that her life is complete, showing us that her ‘healing’ is still in progress. Being unmarried ‘remains the primary cause of much of her distress in her adult life,’ Lemelson reports. Gusti tells us she’s searching for ‘a match. Someone who can understand me. I want to have a happy family, that’s all.’ Caste concerns still shape where she can look; ‘if it’s possible,’ she wants to marry in her caste. She laughs awkwardly as she talks about becoming grandparents with her husband, that ‘no one will be able to tear us apart.’

The Bird Dancer as film and resource: final thoughts

The Bird Dancer, overall, creeps up on you. Lemelson’s explanations are minimal, delivered dispassionately, and the subjects themselves fight to conceal their emotions as they describe their suffering and fear. Lemelson does not medicalize Gusti’s condition, nor does he make explicit the subtle ways that he and the research team have influenced Gusti’s life; the video project itself is a model of applying anthropological practice, not just a documentation of a life with Tourette Syndrome. As we return again and again to meet Gusti, we see her despair grow, but then, eventually, subside as she finds blams to the social correlates of her condition, in part through interacting with a world outside her village. Ironically, both traditional healing and medication prove inadequate to heal her; she tolerates the outrages of traditional healing techniques, but also rejects medication that comes at too high a price. Gusti chooses to endure her condition rather than sleep, but she eventually chooses to flee the social world where her symptoms impose an unnecessary burden.

If, like me, you teach psychological anthropology, The Bird Dancer, and the series of six videos of which it is part, deserve to be on your short list for consideration. Aesthetically, the videos work especially well. The length of each episode, at first daunting, gives the viewer time to digest the various layers of difference: the visual difference of Bali, the cultural variation in practices and issues like self presentation, and the sometimes disturbing disjunction of the lives of individuals with mental illness:

For ethnographic filmmakers, representing mental illness visually is very challenging. Individuals with various mental illnesses may appear normal, as much of what is going on is in the interior of their minds. As a result, it can be difficult to show through film what it personally means to live with a mental illness—or what it means to live with a family or community member who has a psychiatric disorder. (Nakamura 2011: 655)

One of the greatest achievements of the pacing, cinematography and score of The Bird Dancer is that the viewer comes so far both culturally and in terms of psychiatric distance, to really develop compassion for Gusti.

When Karen Nakamura wrote her review of three of the films in the series, no study guides were available, but as I write this, the website for the series has comprehensive study guides free to download available for four of the six videos (see individual video pages, like The Bird Dancer, to get the pdfs). The study guides add immeasurably to the value of the films, both as documentary projects and as teaching materials.

The Bird Dancer is an excellent opportunity, not only to see the social dimensions of mental illness, but also to shine a spotlight on Tourette Syndrome, especially given that this month is TS Awareness Month. The lack of greater understanding in the community, in the West as well as in a small village in Bali, makes too many of us a part of the affliction of an ‘observer’s illness.’


Documentary Educational Resources: The Bird Dancer
Information, purchasing, and other resources.

NIH Pub Med Health information on Gilles de la Tourette syndrome
Tourette Syndrome Association (USA, TSA)

Tourette Syndrome Association of Australia (TSAA)

Ajay Singh, 10 Questions for Robert Lemelson, UCLA Today

Inspirational Tourette’s Syndrome Sufferers 1: Kids with TS.
Kids really make it clear how their Tourette-related problems are as much social and interactional as physiological and neurological in this video.

Living with Tourette’s Syndrome
A video about Florida State University neuroscience student Michael Butler, who has TS, made by his roommate. (Sound’s not great in parts, but it’s really personal and down-to-earth.)

Congrats Samuel Comroe on Taking 1st Place in Soup or Bowl Finals!
Samuel J. Comroe, comedian with Tourette Syndrome

Guy D. Francis’ YouTube channel: TheMainMeals Tourette’s / Autism Adventures
Guy has both TS and Asperger’s Syndrome, and he has a whole series of videos, including videos of himself doing karaoke when his tics are really debilitating him. As he explains, ‘oh yes, I have Tourettes (full blown, you know, swearing and aggressive jerking…) and I have Asperger’s syndrome….Basically, I’m a dream come true.. no not really, that’s just silliness….’

He’s the father of three and, as he also puts it, deals with his neurological conditions ‘in a number of ways.  One of them is Karaoke.’


Afflictions: Culture and Mental Illness in Indonesia [The Bird Dancer, 40 min.] Robert Lemelson, dir. Watertown, MA: Documentary Educational Resources, 2010.

Buckser, A. (2006). The Empty Gesture: Tourette Syndrome and the Semantic Dimension of Illness Ethnology, 45 (4) DOI: 10.2307/20456601

Buckser A (2008). Before your very eyes: illness, agency, and the management of Tourette Syndrome. Medical anthropology quarterly, 22 (2), 167-92 PMID: 18717365

Hollenbeck, Peter J. (2003). A Jangling Journey: Life with Tourette Syndrome. Cerebrum 5(3): 47–60.

Jilek, Wolfgang G. (1993). Traditional Medicine Relevant to Psychiatry. Washington, DC: American Psychiatric Press.

Lemelson RB (2004). Traditional healing and its discontents: efficacy and traditional therapies of neuropsychiatric disorders in Bali. Medical anthropology quarterly, 18 (1), 48-76 PMID: 15098427

Nakamura, Karen. 2011. Review of Afflictions: Culture and Mental Illness in Indonesia. American Anthropologist 113(4): 655-656.

Oliveira, S., & Pelajo, C. (2010). Pediatric Autoimmune Neuropsychiatric Disorders Associated with Streptococcal Infection (PANDAS): a Controversial Diagnosis Current Infectious Disease Reports, 12 (2), 103-109 DOI: 10.1007/s11908-010-0082-7

Singer, H., Gilbert, D., Wolf, D., Mink, J., & Kurlan, R. (2012). Moving from PANDAS to CANS The Journal of Pediatrics, 160 (5), 725-731 DOI: 10.1016/j.jpeds.2011.11.040

Robertson, M. (2000). Tourette syndrome, associated conditions and the complexities of treatment Brain, 123 (3), 425-462 DOI: 10.1093/brain/123.3.425

Robertson MM (2011). Gilles de la Tourette syndrome: the complexities of phenotype and treatment. British journal of hospital medicine (London, England : 2005), 72 (2), 100-7 PMID: 21378617

Tucker, Annie. n.d. (2011?). The Bird Dancer: Film Guide. Gusti Ayu Suartini: Difference and Suffering in the Context of Culture. Robert Lemelson, ed. Design by Yee Ie. Pacific Palisades, CA: Elemental Productions.

Some of the comments on the original post:

  1. Ken ButlandThank you for your incredibly enjoyable and informative review of The Bird Dancer, Greg. I noticed with surprised delight the TS awareness poster, the existence of which I was not aware, and I’ve been at Tourette Syndrome Foundation of Canada for four years. Looks like it was designed for the Foundation but never used. Fascinating.In case it’s of interest to you or your readers, I’d like to mention that the Foundation moderates a global, public, online project called the Great Wall of Tics (, wherein individuals with TS can freely share their tics. It’s relatively new but it has attracted well over 100 entries in its first few months.All the best,
    Kenneth Butland
    Marketing and Communications Coordinator
    Tourette Syndrome Foundation of Canada
  2. Ken ButlandSurprise and delight I should say.
  3. gregdowneyThanks Ken for stopping by, and for pointing out the Great Wall of Tics. I came across it during my research, but didn’t get to link up to it this time. I’ve got enough extra material for another post, but I’m afraid that there’s a lot of stuff I’ve been meaning to get to, so it may take me some time to revisit the material. If anyone’s interested, they should definitely go to the Great Wall of Tics.
    I also found another consciousness raising poster on Flickr’s Creative Commons listing of images with the keyword ‘Tourette,’ and the artwork and fonts are nearly identical. I suspect that you all may have another poster out there as well!I’m glad that you found the post though, and good luck with everything. I don’t know if it’s TS Awareness Month in Canada, but if it is, feel free to repost anything from this blog post that you like (as long as there’s attribution). We make our material available through a Creative Commons Attribution License here as well.Best, Greg
  4. Pingback: 3×5: Culture, Neuroscience, and Psychiatry Weekly Roundup | blog
  5. Robert LemelsonThanks Greg for the thoughtful review. For those interested is seeing our other work please go to our vimeo site
    or our website
    We welcome comments or feedback on our films and associated works.
    We are currently working on a short film on funerary rituals and their intersection with subjectivity in Indonesia, a medium length film on one family’s experience with stigma, destitution and the sex trade, and a feature length film on genderized violence and polygamy.

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Trained as a cultural anthropologist at the University of Chicago, I have gone on to do fieldwork in Brazil and the United States. I have written one book, Learning Capoeira: Lessons in Cunning from an Afro-Brazilian Art (Oxford, 2005). I have also co-authored and co-edited several, including, with Dr. Daniel Lende, The Encultured Brain: An Introduction to Neuroanthropology (MIT, 2012), and with Dr. Melissa Fisher, Frontiers of Capital: Ethnographic Reflections on the New Economy (Duke, 2006). My research interests include neuroanthropology, psychological anthropology, sport, dance, human rights, neuroscience, phenomenology, economic anthropology, and just about anything else that catches my attention.

2 thoughts on “Not allowed to have a small heart: Tourette Syndrome

  1. Though I am not a ticqueur, I have a somewhat analogous difficulty: developmental prosopagnosia, the inability to recognize people by their facial appearance. This is not troublesome to me personally: there is plenty of other information generally available, such as voices, hairstyles, clothing and accessory styles, and so on. But it is offputting to people who know me casually: why am I not acknowledging them? So I do a lot of explaining, and when I attend a convention or similar event, I often pin a sign to my shirt saying “Ask me about face blindness” with blank-featured face on it.

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