In addition to working at Elemental Productions, I am finishing up my Ph.D at UCLA and writing my dissertation on the topic of autism in Javanese Indonesia. As the global awareness of autism spectrum disorders (ASD) rises and rates of diagnosis rapidly increase, many clinicians, policy makers, and anthropologists are eager to know more about the condition’s many manifestations, particularly regarding the interaction of culture and biology in ASD. Some working in the field have estimated that there may be as many as one million Indonesians with autism, but as of yet, little is known about the ramifications for people with autism and their families and communities.
The interpretation, treatment, representation, and lived experience of autism in Indonesia are topics ripe for discussion–different aspects of which may be explored in further blog posts here. My research thus far has in part addressed the way Indonesians themselves are choosing to represent the issue of autism in Indonesia, including on film. A number of film projects featuring autistic characters have been made or are currently in-progress. In 2007 the film Perempuan Punya Cerita (distributed internationally as “Chants of the Lotus”) included a short film featuring an autistic main character. 2011 saw the release of two feature films: Rumah Tanpa Jendela (“A House Without Windows”), adopted from a popular novel about the friendship between a poor but beloved girl and a rich but neglected autistic boy, and Sinfoni Luar Biasa (“A Special Symphony”), a movie about a choir of children with disabilities which was released in Indonesia and the Philippines (and in an interesting side note, includes a minor plot line involving issues of informed consent in video making, something that Elemental Productions is also concerned with.) Still in progress is the documentary film Love Me As I Am, the pet project of famous actress Christine Hakim, which seeks to portray the reality of autism in a positive light and has been covered in the Jakarta post here.
Finally there is I Am Star, a feature fiction film incorporating young actors with autism, which was slated for release in July of 2013. In I Am Star, autistic students and their typical-developing peers contend with new regulations mandating inclusion education for students with disabilities. At the heart of the story are these students and Mella, a popular girl whose little sister, suspected of having autism, was killed in a car crash years earlier and who becomes a vocal advocate for the rights and acceptance of people with ASD and other disabilities.
All of these projects reflect the increasing salience of autism in Indonesia, and all are well poised to expand autism awareness even further. I Am Star is particularly interesting to me because of how it was made: using Indonesian actors with autism to portray autistic characters. This is actually a quite groundbreaking decision. Within Hollywood and other film industries, it has been lamented that people with disabilities are rarely invited to play the roles of characters with those same disabilities, even as actors without disabilities are lauded for taking such “courageous” roles (some of the most famous examples of this are Daniel Day Lewis in My Left Foot or Dustin Hoffman in Rain Man).
Dewi, the mother of one of the boys acting in the I am Star film—who also briefly plays the role of his mother onscreen—was one of the mothers I interviewed for my dissertation research. A warm and gracious woman living in South Jakarta, Dewi told me that in this case, part of the decision to use autistic and non-autistic amateur actors was financial. The film industry in Indonesia is nascent as compared to Hollywood or Bollywood, and on top of that it is difficult to get funding for projects about such a marginalized topic. Meanwhile, Dewi and her family and their friends were ready, willing, and able to act for free, and perhaps most importantly, intimately familiar with the issues portrayed in the movie. Dewi’s son Abhy has autism, and she and her family have worked tirelessly to inform themselves about ASD, obtain the best possible services and opportunities for Abhy, and share their perspective with other Indonesian families. At first knowing very little about autism, after over a decade of trial and tribulations trying to secure education, treatment, and meaningful activities and social engagement for her son, Dewi has opened her own private school for students with ASD and other disabilities, where her daughter is now a teacher.
Using Indonesian amateur actors with autism to play autistic characters overlaps in an interesting way with certain strategies used in ethnographic film: here I am thinking of the work of ethnographic filmmaker Jean Rouch, who in his now-classic films The Human Pyramid (1959) and Jaguar (1967) asked non-actors to play themselves in films with loosely-scripted storylines. In Rouch’s collaborations, participants—be they the white and black students of The Human Pyramid or the migrant workers of Jaguar—were asked to explore hypothetical situations based on real-life social, cultural, and political moments, calling upon their personal experiences to inform their acting. This partly improvisatory, partly imagined, partly realistic experiment resulted in films, sometimes called “ethnofictions,” that captured the felt experience of social tensions and social change in post-colonial Francophone Africa in a way that other, more strictly documentary or ethnographic films could not.
While certainly very different in tone and style from the work of this ethnographic film master, I Am Star similarly calls upon the real-life experiences of its amateur actors to inform the storyline and individual performances in order to investigate the atmosphere of a particular historical moment of social transformation. In the film, the group of students with autism must face a history of institutional discrimination and the rejection of their peers. They ultimately form a pop cover band, which plays music in order to combat stigma, promote awareness, and advocate for acceptance just as they have actually done in real life. Abhy, along with his bandmates Arya, Shinta, and Ervitha have performed as the band I’m Star at numerous local and national events that have been covered in the media and played for various television programs. In this case the amateur actors’ real lives, and the way those lives are acted and represented as part of a film, reveal some of the social and cultural factors—the affect, tensions, challenges, and struggles—that influence the lived experience and interpretations of autism in contemporary Indonesia. As such, the film is both a unique cinematic production and a useful form of anthropological data that can be analyzed and might even potentially become a critical reference point as the rights of people with disabilities and the acceptance of people with autism in Indonesia become more universally achieved.