The bird dancer and the warrior king: Divergent lived experiences of Tourette syndrome in Bali

Tourette syndrome in Bali: Divergent trajectories

Gusti Ayu is a petite Balinese woman now in her mid-30s. She lives alone in Bali’s bustling capital, rarely making the bus trip back to the village in Central Bali where she was born and grew up. Gusti supports herself by making crafts for a fair trade organization and spends her hours off with female co-workers. While she is proud of her hard-earned independence and thankful for these supportive friends, Gusti’s smile is imbued with sadness. Her deepest wish is to find a husband, a wish that increasingly seems unlikely to come true as she is now a decade past the age when most Balinese women get married.

Wayan Yoga is a young Balinese man now in his early 20s living in urban South Bali. He is pleasant, energetic, and unselfconscious with many hobbies including cooking, drawing, and traditional Balinese arts and crafts. He lives in the same cheerful and warm family compound where he was born, maintains a bustling social life, and is actively dating while planning his career as a chef.

Gusti and Wayan both have Tourette syndrome. While their symptoms similarly emerged in childhood and were mild to moderate in severity, the two have had quite different subjective experiences of their syndrome and quite divergent developmental trajectories; Gusti’s despair over her condition has driven her to thoughts of suicide and spurred her to move far from home, while Wayan seems to barely notice his tics and de-emphasizes their role in his positive and normative maturation. How can the same neuropsychiatric disorder, the same diagnosis, and similar symptoms lead to such disparate lived experiences? This article argues that key differences do not stem from clinical disparities but from divergent interpretations of symptoms by family and community and the different responses these interpretations seemed to mandate. Such differences are the result of intersecting factors grounded in Balinese cultural beliefs and practices, including treatments sought, embodied gender expectations, and the caste system.

The etiology and neuropathology of Tourette syndrome

Tourette syndrome (TS) is a neurological disorder characterized by multiple, repetitive, and involuntary physical movements or verbal outbursts known as tics that may occur many times a day, causing impairment in social or occupational functioning. Tics usually appear in childhood but their anatomical location, frequency, and severity may change over time. Tics may be suppressed with a degree of voluntary control, however such suppression often brings feelings of increasing tension only relieved by completing the tic. Some people with TS report repetitive thoughts or compulsions to perform particular movements; the syndrome can be associated with family histories of Attention Deficit Hyperactivity Disorder (ADHD), which is indicated by impulsivity, hyperactivity, and distractibility, or Obsessive Compulsive Disorder (OCD), which is indicated by recurrent and persistent thoughts, impulses, or images perceived as intrusive, inappropriate, and anxiety-provoking, and may be accompanied by either clinical or sub-clinical levels of these conditions. Besides these co-morbid disorders there are no additional impairments associated with TS and no inherent barriers to success or achievement for those with the condition. While symptoms can range from mild to severe, most people with TS fall into the “mild” category. Tics can wax and wane, most commonly exacerbated by stress, fatigue, and negative emotional states and ameliorated by stress relief, pleasure, or intense focus (Nagai, Cavanna, & Critchley, 2009; Singer & Walkup, 1991).

TS is a neurobiological disorder with a genetic component. Although the etiology, primary site, mechanism, and pattern of transmission still remains to be determined (Crane et al., 2011; Ercan-Sencicek et al., 2010; McMahon, Carter, Fredine, & Pauls, 2003; Saka & Graybiel, 2003; Yoon et al., 2007), both structural and functional abnormalities of the brain have been implicated, including dysfunctional dopamine receptors and disinhibition in the sensorimotor and limbic basal-ganglia-thalamocotical (BGTC) circuits and the cortico-striatal-thalamo-cortical (CSTC) pathways (Felling & Singer, 2011). Various medications can help reduce symptoms (Scahill et al., 2006), while cognitive behavioral therapy (CBT) may help channel disruptive tics into more socially acceptable behaviors (O’Connor et al., 2009) and stress relief therapies, such as biofeedback, may decrease the incidence of tics (Nagai et al., 2009).

Research into TS increasingly suggests that it can be understood as a neurodevelopmental disorder. Two of the largest fMRI studies of TS to date identified age-related abnormalities in neurological networks and connectivity, suggesting atypical maturational changes in the brain (Church et al., 2008; Marsh, Gerber, & Peterson, 2008). Moreover, the tics and other symptoms of TS often subside in young adulthood (Felling & Singer, 2011), even if the individual with TS receives little targeted treatment or therapy.

Some gender differences have been identified in the onset and course of TS. Tourette syndrome is more prevalent among males, who are more likely to experience comorbidities, while females with TS are more likely to have an onset of compulsive tics (Santangelo et al., 1994). However, studies have found no significant differences in subcortical morphology (Zimmerman, Abrams, Giuliano, Denckla, Singer, 2000), nor significant neuromotor differences between the groups (Schuerholz, Singer, & Denckla, 1998), and the overall experience of TS appears similar for both genders (Santangelo et al., 1994).

Tourette syndrome in cross-cultural perspective

The above is a brief summary of the current biomedical picture of Tourette syndrome primarily based on research in the United States and Western Europe. Initially identified in French neurology clinics in the fin de siècle period, the syndrome has gone through an interesting cultural history (Kushner, 1999) including a clinical and popular revival in the 1980s and ‘90s (Sacks, 1992, 1994). It is now increasingly recognized across the globe. Epidemiologic literature suggests there are similar rates and symptoms worldwide, although in many places it may still be under-reported (Freeman et al., 2000; Staley, Wand, & Shady, 1997), and “pure” TS rates are still quite low at 1.9 to 6.7 per 10,000 (Tanner & Goldman, 1997).

Alongside advances in understanding TS neurobiology, there is a need for research on its social and cultural elaboration. It is well-established in transcultural psychiatry and medical anthropology that even the most “hard-wired” neuropsychiatric disorders are culturally-shaped in terms of symptom expression, recognition and labeling, opportunities for treatment, and social context and consequences. Ethnographic and interdisciplinary research has robustly established that culture plays a vital role in determining the long-term outcomes of people with neuropsychiatric disorders, yet when compared to the extensive literature on other neuropsychiatric disorders such as schizophrenia (Hopper, Harrison, Janca, & Sartorius, 2007) or PTSD (Kirmayer, Lemelson, & Barad, 2007), there is sparse research on differences in the local meanings and symptomatology of Tourette syndrome cross-culturally (Robertson, Eapen, & Cavanna, 2009). In fact, the few studies done tend to emphasize the general similarity of clinical characteristics (Abuzzahab & Anderson, 1974; Robertson et al., 2009; Staley et al., 1997). While differences in comorbidities, gender ratios, and type and physical locations of tics in various groups of TS patients have been identified (Robertson et al., 2009), these studies have tended to focus solely on symptomatology and other clinical concerns rather than the lived experience of TS outside Euro-American contexts.

The few studies that do address lived experience of TS suggest that there may be meaningful differences between Euro-Americans and non-Euro-Americans. For example, Costa Rican subjects stated that their tics did not cause them impairment or distress, despite the fact that some had been bullied, threatened, or forced out of school. This study suggests that this reported lack of distress in Costa Rica may be due, in part, to a tendency to frame tics as little more than an unsightly “nervous habit” rather than a neuropsychiatric disorder (Mathews et al., 2001). In a comparative study, TS subjects in the United Arab Emirates perceived less stress and impairment and exhibited less co-morbid behavior disorders as compared to TS subjects in the United Kingdom, which researchers postulate is a result of large, stable, and supportive but strict family networks in the Emirates. Arab families may be unfamiliar with Tourette syndrome and hence may downplay symptoms, not seeing them as indicative of a medical disorder (Eapen & Roberston, 2008).

These two studies suggest that the lack of a biomedical label for tics may contribute to minimizing impairment or distress in some non-Western contexts. However, previous research by the first author in Indonesia found the opposite (Lemelson, 2003, 2004). In Bali, where many physical and emotional disturbances are attributed to spirit possession, black magic, or displeased ancestors, tics may be interpreted as indicating an upsetting imbalance in the moral universe, adding layers of distress to symptoms that might be avoided in a strictly biomedical model of TS (Lemelson, 2003, 2004).

Still, when comparing outcomes, factors attributed to cultural milieu are certainly neither uniform nor universal within any one particular culture or across discrete individual experiences. Thus, in addition to illustrating different approaches to and outcomes for people with neuropsychiatric disorder between different cultures, ethnography can also detail variations within cultures by longitudinally tracking and comparing disparate case outcomes. A holistic perspective demonstrates how crucial it is to understand the intersection and interaction of multiple factors in the lives of people with neuropsychiatric disorder because similar influences arising from the same culture can have different impacts for different people.

This paper teases apart such differences by utilizing a case study format comparing the lived experiences of two Balinese people with Tourette syndrome who exhibit similar symptoms. What will be demonstrated here is that even in the comparison of two cases, one needs to utilize a textured, experience near, holistic, and contextual approach to understand “the differences that make a difference” (Bateson, 1972) in illness trajectories, with regard to both the personally and socially elaborated aspects of disease (Kleinman, 1988) and its symptomatological progression; first creating broad categories of inquiry, and eventually refining these in order to determine which factors are relevant to differential outcomes.

The data for the case studies were collected and analyzed using integrated and longitudinal clinical, psychological, and visual anthropology methodology. The study was first grounded in clinical methods; both subjects, Gusti and Wayan, were initially recruited into a pilot study funded in part by the U.S. National Institute of Mental Health (NIMH) looking for cases of neuropsychiatric disorders in the developing world (Lemelson, 2003). ¹ This research was conducted in partnership with a local Balinese psychiatrist, Dr. I Gusti Putu Panteri and participants were recruited from his former patients who met criteria for TS. Once recruited, the research protocol included diagnostic interviews, case review based on clinical history and doctor’s notes, and in-home patient and family interviews. Information gathered included symptoms, age of onset, course, associated features, treatment history, explanatory models, idioms of distress, locally available treatment modalities, and response to treatment (Lemelson, 2004).

In addition to participating in the original clinical study, both Gusti and Wayan agreed to be filmed as part of the first author’s ethnographic project exploring cultural aspects of neuropsychiatric disorder in Indonesia (Lemelson, 2003, 2004, 2010, 2011, 2013; Lemelson & Tucker, 2015a), which combined psychological and visual anthropology methods. This project used person-centered interviews, a central methodology in psychological anthropology which seeks to understand participants’ wishes, hopes, and desires by mobilizing psychoanalytic theory and method and conducting a textured analysis of phenomenology in relation to identity, personhood, and the self (Hollan, 1997; Levy & Hollan, 1998).

What makes our study unique and somewhat unorthodox is the inclusion of a film component. While visual methods such as film have been used to aid in observation, data collection, and archiving in anthropology more broadly, film has rarely been used in psychological anthropology per se (Lemelson & Tucker, 2015b). With its open identification of participants, the use of visual ethnography as part of data collection and presentation does bring up unique ethical concerns with regard to consent, confidentiality, and potential beneficial and harmful impacts to the participants, discussion of which is beyond the scope of the conversation here but has been addressed by others (Clark, Prosser, & Wiles, 2010; Perry & Marion, 2010), and in depth by co-authors in relation to their research, including the study presented here (Lemelson & Tucker, 2017). Furthermore, our methods go beyond mere recording to incorporate elements of narrative, character development, and storytelling, which fosters a focus on the embodied and intersubjective aspects of the emotional force and lived experience of neuropsychiatric disorder (Lemelson & Tucker, 2015b). This research resulted in two films, The Bird Dancer (Lemelson, 2010) about Gusti Ayu and Kites and Monsters (Lemelson, 2011), about Wayan Yoga.

Altogether, the triangulated approach of clinical, psychological, and visual ethnography allowed for an understanding of symptomatology and progression, the subjective experience of these as influenced by and interacting with family dynamics and cultural context, and a particular emphasis on the affective and corporeal components of the disorder and the reaction to it—in sum, enabling a more holistic consideration of what was truly at stake in Gusti’s and Wayan’s lives than a singular focus using any one of these methods alone could provide. Ultimately, we found it was the way the subjects were positioned in their social and cultural world with regards to their disorder and the ways they responded to that positioning that most meaningfully impacted on their subjective experience and long-term outcome. In this, it became clear that certain aspects were more salient than others. First, the preference for local Balinese explanatory models of disturbance over a neurobiological one seemed to complicate and exacerbate the impact of the disorder, layering emotional and social suffering on top of symptoms. Second, gender differences significantly impacted the experience of the disorder, highlighting pre-existing structural restrictions and vulnerabilities placed on Balinese women. Third, caste played a role in the impact of symptoms, particularly when intersecting with gender, again because of the freedoms and prohibitions accorded men and women of different castes. Understanding these specific gendered differences in the experience of TS in Bali underscores the need for a fuller picture of the outcome and lived experience of TS as culturally variable, even if symptoms are similar.

Gusti Ayu

Gusti Ayu is a high-caste Balinese woman born in the late 1970s in a rural village, the youngest of four. She grew up helping around the family compound; caring for livestock, cooking, and preparing the many offerings required for Balinese religious life. She attended elementary school and was a bright student. However, when she was in mid-childhood Gusti began exhibiting bizarre behaviors—twitching, spitting, clicking her teeth, hitting herself, and yelling out obscene words like “bastard dog,” all for no apparent reason. Her family had no idea what was wrong with her. At first they thought she was ill, then decided she was misbehaving. Gusti was frequently punished in the classroom and, due to her perceived defiance and her family’s embarrassment at her condition, in the fourth grade she was taken out of school, never to return.

Over time it became clear that her behaviors were indeed out of Gusti’s control, but this led to only more worry; her jerky movements looked like those of trance dancers temporarily possessed by spirits, or those in Manuk Rawa, the Bird Dance in the Ramayana dance drama. Neighbors started to openly mock her by calling her “the bird dancer,” speculating that she had been possessed by an evil spirit or had gone insane. Others feared that her mysterious illness was contagious and shunned her.

As Gusti moved into adolescence her friends pulled away and her family grew increasingly frustrated. Her male and female siblings suffered too, as the stigma of an unknown illness in the family rendered them undesirable marriage partners ² and drained the family finances. In the face of these social difficulties, Gusti and her family steadfastly searched for a cure, consulting with multiple traditional Balinese healers known as balian (Connor, 1995; Simeon, 1977). Many healers agreed that Gusti’s problems were the result of black magic, a common diagnosis in Bali. Others suggested the family had displeased an ancestor with improper ritual offerings. They prescribed a variety of treatments according to Balinese theories of affliction and wellbeing in order to restore Gusti to health, including asking her to make rice offerings, go to the ocean to pray, gather “filthy things” such as the hair of a monkey to be used in a purifying ritual, drink her own urine, and go to a graveyard at midnight—typically a terrifying place for those Balinese afraid of spirits—and pray. Herbal specialists prescribed tinctures and others submitted her to spinal adjustments and other physical treatments, some of which involved the placement of burning hot metal on her skin and the application of caustic substances to her eyes. One massage therapist asked Gusti to remove her shirt and touched her in a way that made her deeply uncomfortable. These treatments caused Gusti to feel physical pain, worry, disgust, and shame, sometimes so severe that in her own estimation she “felt like she was going to die.” Some treatments were not as bad, and occasionally Gusti felt hopeful and encouraged. Ultimately, though, whether her evaluations of local treatments were positive or negative, they did not provide her lasting or significant relief from her tics and therefore neither did they ameliorate the tense familial situation that had developed in response to them.

In addition to seeking help from traditional healers, Gusti also consulted with psychiatrists and neurologists. When she was in her late teens she was diagnosed with TS by Dr. Panteri. Dr. Panteri explained the neurobiological model of TS to the family, but they found his explanation less convincing than local explanatory models. Given the diagnosis, Dr. Panteri prescribed Haloperidol, which alleviated Gusti’s symptoms but also caused nausea and fatigue, side effects she felt were more impairing and unpleasant than those they were intended to cure. In any case, these medications were expensive, so the family discontinued treatment, which only reinforced their beliefs that her problem could not be solved by medical means, due to its supernatural causality or perhaps Gusti’s own recalcitrance. The interminable efforts to resolve Gusti’s problem, none of which seemed to provide any lasting relief, significantly stressed the entire family. Her brother occasionally mocked and beat her, and her father said that if she could not be cured, he wished that she would die.

A potential opportunity for reprieve arose when Gusti developed a romance with a local man. They dated for about three months. He treated her with kindness and proposed marriage; she longed to accept, but he was of a lower caste than her family and therefore her parents forbade the union. Gusti regretfully acquiesced to their decision. A few times in desperation she tried to run away, but her family locked her up to prevent her escape. Feeling increasingly trapped and anguished, struggling with the symptoms of her disorder and the frustration of ineffective treatments, filled with grief from feeling like a burden to her family yet simultaneously boxed in by them, Gusti frequently contemplated suicide.

Over time, Gusti became certain that to ease her own suffering she would have to establish her independence. She moved to Denpasar and found work. She made new friends who accepted her tics and encouraged her to accept them, too. Gusti felt confident to be taking care of her own needs without feeling like a burden and happy to be out of the oppressive environment of her village. With newfound social support, she developed more effective coping mechanisms to respond to the teasing and stares that she still at times encountered. She found that the comfort and focus of her new life eased her anxiety, which in turn seemed to lessen her tics.

Despite this highly positive change in milieu, the challenge that persists for Gusti is her search for a husband. Her longing for love and marriage is deeply personal but also socially and spiritually motivated: Gusti wants a soulmate but she also wants to fulfill her responsibility as a Balinese woman by bearing children, in order to continue her family line and ensure the reincarnation of her soul. She worries about her dwindling prospects and sometimes feels overcome with bitterness.

Wayan Yoga

Wayan Yoga was born in urban South Bali, the elder of two boys living in a lively extended family compound. From a very early age, Wayan was interested in the arts. As a young child he was captivated by the monsters of Balinese mythology brought to life onstage in village theaters and folk storytelling. He enjoyed drawing pictures of Rangda, a witch, and dancing out the action of these dynamic tales. If not drawing or dancing, he could be found out fishing or flying kites with the other boys from the neighborhood.

When Wayan was about four and a half years old, his family noticed he was blinking frequently and severely, and repetitively yelling out different “dirty” words and phrases such as “fuck,” “cunt of the dog,” etc. He would also flex and release his stomach muscles in an exaggerated manner, seemed to have difficulty focusing, and had become overly obsessed with terrifying creatures from Balinese mythology, such as ogoh-ogoh, or monsters and kala butha, or evil spirits, talking about them all the time and describing bloody battles between them and humankind. While the content of Wayan’s obsessions were somewhat culturally typical and age appropriate, his deep level of engagement and fascination with them was not. The family was uncomfortable with his behavior, in particular with his inappropriate shouting, so his father took him to see the doctor on staff at the hotel where he worked. The doctor prescribed medication, which didn’t seem to have a marked effect. The family then took Wayan to see a traditional healer, but Wayan’s condition did not visibly improve after the visit. His father called a family meeting and, after consulting with the group, decided to pursue further medical treatment with a specialist. In doing so he found Dr. Panteri, the same psychiatrist who treated Gusti. As he had done with Gusti’s family, Dr. Panteri presented the neurobiological model of Tourette syndrome to the family, explaining to them that Wayan’s behaviors were to a great extent out of his control but that he was otherwise perfectly normal and healthy. Dr. Panteri explained that there were other Balinese people with TS, counseled the family not to get angry at Wayan or think of him as “naughty” and not to worry about him too much, but to support him and advocate for him, encouraging them to educate others. Once Wayan entered elementary school, the family did in fact explain his condition to his teachers and peers so that he would not be stigmatized or punished. They also adhered to the pharmacological regimen prescribed by Dr. Panteri.

As he grew, Wayan continued to experience minor symptoms. When he was eight, he was regularly taking his medication but still displayed occasional bizarre movements and had difficulty focusing for long periods of time. However, his parents remained convinced that his encounter with the psychiatrist had been a turning point in Wayan’s behavior, after which he more or less continued to do well. His relationships with peers were normal and he still enjoyed flying kites and drawing. The family took every effort to include Wayan in family activities, and if it seemed that he was isolating himself, they would try to engage him.

By his middle adolescence, Wayan was still having occasional episodes of bodily jerking, head nodding, and arm flapping—although he no longer moved his stomach or shouted out inappropriate words. Due to changes in the family’s finances they were no longer able to afford his medication, but were using herbal Chinese medicine and felt that it was having a somewhat positive effect. Wayan had not internalized any negative feelings about himself due to his tics, maintaining an active social life; indeed, because his peers and family members were so used to his tics they didn’t seem to pay them much mind and Wayan, confident in his emerging manhood, said that if anyone dared tease him about these movements he would knock them about to teach them a lesson. He seemed to have naturally grown out of his childhood obsession with demons and monsters, although his affinity for kites had deepened and he was now making his own.

After he graduated high school, Wayan chose to attend culinary school in order to get a job on a cruise ship as his cousin had done, a job that can be quite prestigious in Indonesia because of the relatively high salary. If that did not come to pass he planned to work in a hotel like his father. After his initial nerves about attending school, he reminded himself that if he put his mind to it he could achieve anything. His family currently describes his symptoms as in almost total remission, only emerging when he feels particularly stressed, despite the fact that he is no longer pursing treatment of any kind. He is actively dating and optimistically planning for his future as a family man, still passing his free time building kites, drawing, dancing, and hanging out with his neighbors playing computer games.

The potential benefits of neurobiological explanations: A relief from “meaning”

The contrast between Gusti’s and Wayan’s experiences first points to the role of traditional healing of neuropsychiatric disorders such as TS. The first author has addressed this at length elsewhere (Lemelson, 2003, 2004), but we present a brief review of key ideas here.

In the Determinants of Severe Mental Disorders (DOS-MeD) and related studies, attributing illness to external factors that harmonized with local belief systems rather than neurobiological causes internal to the person seemed to lead to better outcomes (Hopper et al., 2007). However, in Gusti’s case, attempts to ascribe meaning to her symptoms through traditional healing logics and treatments were not particularly helpful. Balinese healing, which has maintained remarkable stability over the last century (Hobart, Ramseyer, & Leeman, 1996), mobilizes complex intertwined explanatory models for illness or ill fortune: magic and sorcery, reincarnation, poisoning, improper enactment of rituals, and imbalance (Connor, 1982; McCauley, 1984; Nala, 1993). These complex, multilayered, and multivalent explanatory models may not be very effective at relieving the symptoms of neuropsychiatric disorders in part because they may not alter the specific neurotransmitter systems causing the symptoms (Lemelson, 2003, 2004), but also because they may in fact cause further suffering or layer distress on top of tic symptoms. In other words, it is the logic of medical explanation, not medications or other biomedical interventions per se, that may help to destigmatize TS in Bali and improve outcomes. Frameworks of meaning that rendered Gusti cursed, possessed, contaminated, contaminating, or being punished with her illness actively made her feel worse while offering little relief for her symptoms. Indeed, once she determined that her family and community seemed unwilling or unable to change their interpretation of her disorder, and hence anticipated no decrease in her stigmatization and suffering, Gusti decided to leave.

In contrast, a neurobiological model might actually free people from the quest for meaning in their illness experience, which in the case of TS (and perhaps counterintuitively) may in and of itself bring great relief. Wayan Yoga’s family did accept a neurobiological explanation for his symptoms; and even though he stopped taking medication, he still experienced his symptoms in a less severe way. Their experience attests to the potential benefits of such an explanation, which in effect suggests that the tic and other behaviors involved in TS are in fact “meaningless,” indicating nothing more than a neurological disorder that is unrelated to cosmological order, interpersonal or community relations, or even personal agency. In such cases, a biological explanation for the symptoms of Tourette’s may partially or significantly reduce the stigma attached to the illness precisely by stripping away cultural (or cosmological, or interpersonal) meaning.

However, as these two cases illustrate, it is not as simple a matter as having been introduced to the neurobiological model of illness. In certain cases and according to certain belief systems, a biological explanation may remain only partially satisfying; as Good (1992) notes, culturally distinctive etiological concepts such as witchcraft or spirit possession organize illness experience even when the illness has been given the overlay of a psychiatric diagnostic category (cf. Grinker, 2007, on autism in South Africa). In this case, the biomedical diagnosis alone was not satisfying to Gusti’s family.

Neuropsychiatric disorder and gendered embodiment

In sum, while Gusti’s tics in and of themselves were not particularly severe, her family and community’s reaction to them were. Gusti had been isolated, restricted, and mocked, which impacted her mood to the extent that she fit the DSM diagnostic criteria for Major Depressive Disorder (albeit given the cultural problematics this label brings when applied in a cross-cultural context [Mezzich et al., 1999]). She had been forbidden to attend school, had difficulty finding a partner, and was subjected to painful treatments intended to “cure” her. Her social marginalization and maltreatment certainly caused her more pain than the initial symptoms of her disorder, which in and of themselves did not impede her ability to work, study, or flourish. Unfortunately, none of these social facets of her experience are unusual aspects of disablement experienced by women with various impairments or disorders all over the world (Fine & Asch, 1981). Meanwhile, Wayan experienced comparatively little social suffering as a result of his initial symptoms. The differences in preferred explanatory models do not fully explain the differences in outcome; instead, the comparison of Wayan’s and Gusti’s cases raises interesting questions about what role gender might play in the interpretation and long-term ramifications of a neurological disorder. More specifically, what kinds of constraints are imposed, and what kinds of opportunities are afforded to men and women in Bali, and how might these intersect with Tourette syndrome?

First, gendered expectations for behavior may affect the way Tourette syndrome is experienced and interpreted on an embodied level. Cultural context provides corporeal scripts, constructing a habitus of physical postures, behaviors, and comportment (Bourdieu, 1977). This habitus may be significantly gendered (McNay, 1999); put simply, men and women are taught and allowed to move in different ways. Throughout Bali, women are expected to move smoothly and gracefully (Belo, 1970; Wikan, 1990) and master their emotions—even subtle expressions of anger or displeasure may be thought to be shameful. The female ideal is contained and submissive (Jennaway, 2002a; Parker, 1997). Men, while also called upon to maintain a composed demeanor, are allowed a wider range of dynamic physical expression, normatively socially self-projecting, bolder, and noisier (Parker, 1997).

A distillation of these differences can be found in Balinese performing arts, and the way women and men move in the dances and dramas for which they are internationally renowned. Women typically play the roles of princesses, nymphs, temple attendants, or birds of paradise. Their movements are sinuous, refined, and often incorporate gestures of obeisance (McPhee & Murdoch, 2000). One of the few times women are freed of these constraints is during moments of trance possession, when they perform with stiff, jerky or otherwise unruly movements (Belo, 1960). When exhibited outside the confines of sanctioned ritual performance, such movements may still be interpreted as signs of possession but so-called “peripheral” possession (Seligman & Kirmayer, 2008), which reflects a disturbance in cosmological order and vulnerability in the one possessed. Suryani (1984) has described the Balinese phenomenon of bebainan, “attacks” believed to be caused by malignant spirits sent to prey on young women, causing brief episodes of screaming, rude speech, and physical rigidity or loss of control. Those considered most vulnerable to such an attack are those thought to be “mentally weak” or sinful. These gendered interpretations of physical comportment appear to have been at play in the response to Gusti’s non-normative movements and vocalizations; some villagers negatively compared her to possessed performers while others thought she might be bebai.

In contrast, men have a freer range of motion onstage and in everyday life, with different permissible and even admirable movement qualities, some of which may be explosive and staccato. Like Gusti, some of Wayan’s tics seemed to mimic the movements performed in traditional dances, particularly the repetitive inflating and constricting of his stomach muscles and the tensing of his arms bent at the elbow—a similarity that becomes particularly noticeable when viewed on film. In Wayan’s case, however, these movements are congruent with the movements of revered male characters, including warriors in the Baris dance and kings in the Topeng Tua dance (Dibia & Ballinger, 2013), movements Wayan in fact performed proudly for the research team. Therefore, while his tic movements are out of context, they are not inherently incongruous with a culturally constructed gender identity and hence not in and of themselves devaluing.

Gender and caste

The rich matrix of Balinese cultural forms interact with Gusti’s and Wayan’s tics by acting as a central frame of reference for interpreting their physical comportment and expression, both directly and consciously and perhaps unconsciously lending positive or negative value to certain physical qualities or behaviors, based on psychocultural values of emotional expression, beliefs about spirit possession, and embodied gender norms and ideals. Giving further nuance to a consideration of gender in the context of neuropsychiatric disorder in Bali is the structure of marriage within the caste system. Balinese society is organized according to clan, kinship groups known as dadia, and caste. The current caste system in Bali has evolved over time, influenced by indigenous hierarchies; Indian traders on the island, which some scholars trace back to 900 AD or before; and the caste structure imposed by Javanese Hindus during the Majapahit conquest in the 14th and 15th centuries, which was rigidly enforced during Dutch colonial rule (C. Geertz, 1973). There are four main castes in Bali. Sudras make up approximately 90% of the population and are generally laborers and farmers. The other 10% are divided into the gentry castes: Wesyas, traditionally merchants; Satrias, traditionally warriors and kings; and Brahmans, traditionally priests and teachers. The adherence to the caste system varies throughout Bali (C. Geertz, 1973; H. Geertz & Geertz, 1975) but still reliably determines aspects of speech, behavior, and affiliation for many.

The caste system remains especially important during courtship and marriage. Marriage is of primary importance in Balinese culture, not solely because it provides kin networks of support, economic stability, status, and a loving partnership, but because it leads to children. Children are particularly important in Balinese Hindu beliefs because the reincarnation of ancestors, crucial to the liberation of the soul, occurs through the patrilineal family line (H. Geertz & Geertz, 1975; Hobart et al., 1996; Lemelson, 2013; Pringle, 2004). In seeking a mate, men are permitted to marry a woman of a lower caste, in which case the woman is given a new title and experiences a rise in status; but women may not marry lower-caste men (H. Geertz & Geertz, 1975). If a woman chooses to marry an unsuitable partner despite this prohibition, she must elope, potentially jeopardizing her relationship with her family (H. Geertz & Geertz, 1975; Jennaway, 2002b).

This context of marriage practices may help explain why Gusti’s parents forbade her to marry a man of lower caste, even though it represented a chance for love on her part, relief of the financial burden of caring for her for her parents, and a removal of the social stigma of having an “unmarriage-able” family member for her siblings. If Gusti had been a man, however, it would have been acceptable for her to marry a partner of lower caste, a match that might have been desirable for the hypothetical woman, who would rise in status despite being married to someone with a disorder.

Wayan’s family is Sudra. Being of the majority caste and a male, Wayan does not have to significantly worry about caste in considering a potential mate the way a woman of Gusti’s caste does, as most women will be of the same caste as Wayan. In any case, Balinese men have more structural agency than women in determining their own marital fate, because men actively choose their mates, asking for the woman’s hand, while women to a certain extent must wait to be chosen “like a flower waits for a bumblebee” (Jennaway, 2002a). This is compounded by a pervasive fear of spinsterhood, which in women’s minds is associated with a lack of offspring, the threat of financial destitution, and a lack of social power (Jennaway, 2002b), making women more likely to accept a man if proposed to rather than risk losing the chance at marriage. Despite his tics, therefore, simply because he is male, Wayan’s chances of finding a life partner are better than Gusti’s, hence his family’s anxiety surrounding his marriageability—the key component of achieving full maturity—are much lower.

While gender or caste alone cannot account for all the particular outcomes among Balinese subjects with TS, Gusti’s and Wayan’s cases illustrate some of the potential ramifications for community or family acceptance, and the achievement of marriage or other normative adulthood roles. In earlier research on Obsessive Compulsive Behavior in Bali, the first author has argued that neuropsychiatric disorders can act as a lens that magnifies key social structures and cultural concerns (Lemelson, 2003). For example, the content of what the Balinese person with OCD needs to check and re-check often revolves around local rules of etiquette that are crucial to cultural and social belonging. While cultural and social structural issues may not determine much of the content of TS symptoms per se, TS may also act as a lens that magnifies the structural vulnerabilities of particular individuals within gendered networks of caste. Because Gusti was a higher-caste woman, her ability to determine her own fate by choosing a partner, assert her status as a full adult, and relieve her family of the perceived burden of having to take care of her throughout her life course via the culturally crucial act of marrying was already limited because she had to wait to be proposed to; in her case, the already strict parameters of proper comportment and desirability for females seemed even more unattainable due to her Tourette symptoms, which further minimized her chances of receiving such a proposal.

Tourette syndrome as a developmental disorder and the long-term impact of stigma

The contrast between Gusti Ayu’s and Wayan’s experiences underscores the importance of positive support and illustrates the harmful long-term effects of stigma, particularly during crucial stages of development. Both Gusti’s and Wayan’s symptoms emerged in mid-childhood, but Gusti’s have persisted while Wayan’s have largely faded. This question of “growing out of” certain troublesome behavior may be particularly relevant to TS, which as described above can be considered a neurodevelopmental disorder where symptoms emerge in childhood due to developmental differences in the brain, but have the capacity to fade over the course of neurological maturation. Wayan’s TS indeed seems to have followed this course.

Meanwhile it has been demonstrated that family rejection, stress, and negative affect—also known as high levels of expressed emotion (EE)—can exacerbate various neuropsychiatric disorders and negatively impact long-term prognosis (Marom, Munitz, Jones, Weizman, & Hermesh, 2005), including for developing children and adolescents (Asarnow, Tompson, Hamilton, Goldstein, & Guthrie, 1994) and those with Tourette syndrome specifically (Lin et al., 2007). Furthermore, as mentioned previously, focusing on meaningful activities and stress relief often lead to a decrease in tic symptoms, while anxiety or inactivity may cause an increase in tic frequency and severity as well as contribute to mood disorders such as depression, which can be comorbid with TS (Robertson, 2006). It is therefore possible that the family judgment and frustrating quest for a cure that Gusti endured actually exacerbated her symptoms on a neurobiological level, as did her removal from school and the foreclosing of opportunities for other potentially positive, focusing activities for much of her childhood and young adulthood. Unlike Wayan, Gusti’s tics have persisted. Although her symptoms wax and wane, they often subside when she is surrounded by her friends and co-workers, but flare up again when she anticipates making a visit back to her home village for ritual celebrations.

Gusti’s and Wayan’s cases suggest that, considering both the neurobiological and ethnographic evidence, it is reasonable to conclude that the way a person with Tourette syndrome is treated by family and peers when exhibiting symptoms will influence the long-term course and outcome of their disorder—both co-morbidities such as mood disorders but even the tic symptoms themselves. This treatment is folded into other aspects of daily life permeating and informing subjective experience, such as gender, caste, and cultural surrounds, which might further amplify or ameliorate these symptoms and influence their interpretation.

“Semantic symptoms” and social suffering in local worlds

Considering Gusti’s case alongside that of Wayan’s, raises compelling questions about the nature of suffering in the context of difference. In particular, can we separate the suffering caused by physical or neurological impairments from the suffering caused by their interpretation? How much of the pain and despair people feel is caused by processes internal to them, and how much are they affected by their interactions with the social world they live in?

Writing specifically about TS, and echoing Byron Good (1977), Buckser terms these issues of interpretation to be “semantic symptoms” or “symbolic discontinuities between particular cultural systems and particular disease processes,” which can create conflicts and challenges that are as disabling as physical symptoms (Buckser, 2006, p. 258). In his ethnographic work amongst people with TS in North America, Buckser has suggested that while TS is neurological in origin, it is primarily a dialogic condition defined by “the ongoing need to attach meaning to what are quite literally empty gestures” (Buckser, 2006, p. 256). This can put a burden on people with Tourette syndrome, in essence making it seem as though determining the meaning of these gestures is their problem to solve—or suffer the consequences.

Shifting this burden, Hollenbeck (2003), a neuroscientist who has called Tourette’s “a disease of the onlooker,” asserts that those with TS who do well are those surrounded by “compassionate onlookers.” This is certainly borne out by Gusti’s and Wayan’s divergent experiences. Wayan was lucky that he found a community of “compassionate onlookers” earlier on in the course of his TS, while Gusti only found one much later in her adult life. This has meant that Wayan internalized a self-concept of being “normal” from an early age, whereas Gusti internalized a sense of herself as being shameful and burdensome, which she could only reconsider later, once she found her own compassionate community (arguably, the researchers were part of this community, as discussed in Tucker & Lemelson, 2017).

The gaze of such “compassionate onlookers” can, to a certain extent, come from a level of understanding of TS’s biological origins, as illustrated by Wayan’s family’s approach, suggesting the potential benefits of advancing a kind of neuropsychiatric “literacy” akin to or alongside a broader “mental health literacy” (Kirmayer & Ban, 2013) in the lives of people with TS. However, attention must be paid to other structural and cultural factors that might challenge an activation of such compassion—factors that might be somewhat unexpected due to their apparent tangential relationship to health, such as caste.

Conclusion

The social, corporeal, and psychocultural worlds Gusti and Wayan were living in clearly shaped the reaction to their tic symptoms through views about health, witchcraft, physical demeanor and gender roles, and the caste system and marriage customs. In both of their lives, any one of these factors taken on their own could not have been fully predictive of the way it might shape their experience of Tourette syndrome; rather, the ways these factors intersected powerfully influenced their feelings about symptoms and long-term developmental and illness trajectories.

This comparative study has implications for understanding Tourette syndrome in a variety of cultural places. Our findings both underscore and challenge assumptions in medical anthropology. They underscore the cultural relativity of illness and disorder, by situating the source of disability and suffering not within individual biology but in the interplay of individual experience and social worlds (Ingstad & Whyte, 1995; Kleinman, 1989; Shakespeare, 2013)—even in what is thought to be one of the most “purely” neurological disorders. Precisely by situating illness and suffering in the social world, however, our findings challenge the commonly held idea in anthropology that locally coherent explanatory models and treatment modalities can inherently contribute to a better prognosis and outcome (Lemelson, 2004). It may be that models of illness that strip meaning away from symptomatology may minimize anxieties about the disorder, and promote compassionate social acceptance and inclusion.

Our findings also underscore and challenge research that has tended to reiterate how Tourette syndrome is more or less “the same” for both genders (Santangelo et al., 1994; Schuerholz et al., 1998) and across cultures (Robertson et al., 2009; Staley et al., 1997). This is clearly not so in Gusti’s and Wayan’s case, suggesting that there remains much more to be discovered in the intersectional study of TS.

Finally, when considering the dialogic nature of TS it may well be that in a case of this “disease of the onlooker,” the internalization of symptom interpretation may actually impact the neurobiology of the disorder, exacerbating the severity and extending the longevity of tic symptoms, and contributing to co-morbidities of mood or behavioral disorders. While this interplay of cultural and biology is now a given in contemporary social and cultural neuroscience (Chiao, Li, Seligman, & Turner, 2016; Kirmayer, Lemelson, & Cummings, 2015), the exact mechanism as it may unfold in Tourette syndrome specifically remains to be explored. This comparative case thus invites further person-centered and ecosystemic research into Tourette syndrome in different cultural places.