Kathryn Cai
The recent documentary Swim Team, which is currently being screened across the US,[1] closely tracks the lives of three teenagers in suburban New Jersey as they navigate their everyday lives. The teens are all on the autism spectrum, and the team was formed by Mike and Maria McQuay in part because their son Mike Jr. has autism. The film presents a close-up glimpse of everyday life with autism by interspersing scenes of everyday life with first person interviews with the team members and their parents and follows the team as they go through school and family routines, trainings, and competitions in the Special Olympics.
These depictions of the experiences of autism interwoven into everyday life resonate with scholarship in medical anthropology and disability studies that considers how meanings of illness take shape within everyday life contexts that include but also exceed clinical encounters. Scholars in disability studies argue that the medical model diagnoses bodily and mental states within symptomatic rubrics that pathologize non-normative bodies.[2] With respect to autism, advocates of neurodiversity emphasize neurological difference as a part of human variation.[3] Sharing the investments of disability studies more broadly, these models draw on difference, rather than deficit, to conceptualize non-hierarchical ways of considering bodies and minds. As medical anthropologists note, however, the interface of the medical and the everyday is more complex than a relationship of straightforward opposition. Medical anthropologists, particularly those who study the role of patient narratives of illness, call attention to how illness experiences must be understood in relation to wide-ranging social contexts beyond the biomedical.[4] This attention to how meanings emerge through everyday life contexts resonates with the investment in disability studies in considering bodies beyond their biomedical categorizations. Ethnographic research, however, also suggests how biomedical concepts can be useful and helpful in everyday life contexts and how they shape and are themselves transformed within these contexts. Here I would suggest that this ethnographic attention to the textures and meanings that emerge within contingent and shifting interpersonal and everyday contexts can also nuance how disability studies considers the interface between the medical and the personal.
To briefly consider the complex uses and meanings of biomedical concepts in everyday life, I turn now to a scene from Swim Team. In a more emotionally fraught scene in the film, Robbie’s mother, who has never told her son that he has been diagnosed, attempts to explain to Robbie that he has autism. She begins the conversation by asking if he feels that he is different from other children. Robbie answers that the other children are different, and his mother corrects him by re-emphasizing her question: not whether the other children are different from him, but whether he is different from “the regular kids in school”?
When his mother asks him whether he knows why he is different, Robbie expresses that he does not wish to discuss this question and that he does not want to know. His mother affirms that he does not wish to talk about it now but says that “one day you want to know the truth, right?” Both pause to rub their faces and appear to be quietly digesting. His mother then asks if he knows what autism is, to which he replies no. She asks if he knows why he is in the Special Olympics and explains that everyone who participates in the Special Olympics has a disability, and Robbie is there because he has a disability called autism: “You have speech delay, you have trouble speaking and trouble focusing, right?”; she ends her list of symptoms with a question that re-establishes a connection with Robbie and checks in with him even as she asserts his diagnosis.
When I saw the film, I was struck by Robbie’s mother’s use of what might be considered diagnostic and normative language to explain autism to Robbie; far from a straightforward dichotomy between pathologizing medical language and care or acceptance, Robbie’s mother draws on the terms of speech delay and trouble focusing and distinguishes between Robbie and “regular” kids within the context of love and care and in an attempt to help Robbie conceptualize his difference. Though we do not have full context for the scene, the medicalized terms Robbie’s mother uses are embedded within anxiety for his future and care for him. Anthropologist Mara Buchbinder elucidates how concrete medical diagnoses can help patients conceptualize their experiences as separate from a sense of their individual personhood; clinicians often use the characterization of “sticky brains” to characterize difficult-to-explain pain in direct contrast to assessments that patients had received elsewhere that their claims were imaginary or fabricated.[5] Similarly, Linda Garro writes that the medical diagnosis of ADHD helps individuals and their families distinguish brain chemistry from a sense of the individual’s holistic personhood.[6] In these cases, both individuals and their families can be comforted by explanations that helped them maintain a sense of identity apart from the diagnosis. Though Robbie’s mother’s primary concern in this scene seems not to be centered on his interiority, her use of diagnostic language is nevertheless embedded in her consideration of his life trajectory informed by but not wholly defined by autism. Furthermore, medicalized language here seems to provide a concrete means for her to explain certain of Robbie’s differences to him, suggesting that colloquial language for difference that is not constructed in a framework of delay or difficulty, which suggest deficiency, is not readily available, hence the turn to medicalization.
This moment of dialogue serves as a brief example for how hierarchical and medicalized language and frameworks suggest contingent and nuanced meanings within the interpersonal everyday contexts in which they are used. Robbie’s mother further embeds this medicalized language within conversational gestures that repeatedly establish connection between them. Similarly to earlier in the conversation, she asks Robbie repeatedly for affirmation and echoes him to re-establish their emotional co-presence throughout the conversation; for instance, she asks, “are you okay with that?” He says, “yes, I’m fine,” which she echoes, “you’re fine, okay.” She ends the conversation by telling him, “Every time I tell you something it’s because I love you and I want the best for you,” to which Robbie replies, “I can handle it,” and she echoes, “You can handle it, I know.” The complex interplay between the medical and the personal testifies to how negotiations of everyday life shape and are shaped by the meanings of both.
Image Credit: Film poster retrieved from www.swimteamthefilm.com.
[1] The film can also be streamed online through PBS at http://www.pbs.org/pov/swimteam/video/swim-team/.
[2] Kafer, Alison. Feminist, Queer, Crip. Indiana University Press, 2013; Siebers, Tobin. Disability Theory. University of Michigan Press, 2008.
[3] Hart, Brendan. “Autism parents & neurodiversity: Radical translation, joint embodiment and the prosthetic environment.” Biosocieties 9.3 (2014): 284-303; Jaarsma, Pier and Welin, Stellan. “Autism as a Natural Human Variation: Reflections on the Claims of the Neurodiversity Movement.” Health Care Analysis 20.1 (2012): 20-30; Osteen, Mark, editor. Autism and Representation. Routledge, 2007.
[4] Garro, Linda C. and Mattingly, Cheryl, editors. Narrative and the Cultural Construction of Illness and Healing. University of California Press, 2000.
[5] Buchbinder, Mara. All in Your Head: Making Sense of Pediatric Pain. University of California Press, 2015.
[6] Garro, Linda C. and Yarris, Kristin E. “‘A Massive Long Way’: Interconnecting Histories, a ‘Special Child,’ ADHD, and Everyday Family Life.” Culture, Medicine, and Psychiatry 33 (2009): 559-607.
