This review spotlights two films that centralize disabled women's lives: Semicolon; The Adventures of Ostomy Girl (dir. Robin Greenspun, 2015), an American documentary about Dana Marshall-Bernstein, a woman with Crohn's disease, and Margarita with a Straw (dir. Shonali Bose and Nilesh Maniyar, 2014), an Indian drama about Laila (Kalki Koechlin), a woman with cerebral palsy who is an aspiring writer. Both films shed light on the gendered and sexual dimensions of ableism and emphasize the crucial nature of disabled women's autonomy. In spotlighting mother-daughter relationships, the films also show young disabled women's insistence on self-definition and separation from their able-bodied parents. In both films, disabled women express their independence and agency through their aesthetic practices.
Semicolon; begins with two definitions of "semicolon" that the documentary explores: 1) a punctuation mark indicating a pause or a major transition and 2) a young woman with very little colon left. The film follows Dana Marshall-Bernstein, a 25-year old woman who was diagnosed with Crohn's disease when she was four. To bypass digestion, Dana relies on total parenteral nutrition (TPN) and spends much of her time in treatment at the Cleveland Clinic. Throughout the film, she considers whether or not to undergo an intestinal transplant, but the film ends prior to her making her decision (at a semicolon, so to speak), which serves to highlight living with Crohn's rather than solely pursuing a cure as the film's focus.
The film's primary goal is educational: "The problem with having something called 'inflammatory bowel disease' is the word 'bowel,'" Dana explains, "because people don't want to talk about that." If the film portrays Cleveland Clinic as Dana's "second home," it represents the doctors as part of her extended family by emphasizing the length of her relationships with them and the special care they take in addressing her anxieties as well as her symptoms. She also consistently challenges her parents' control over her self-definition; the film spotlights the tensions among Dana, her parents and her doctors as they attempt to impact her treatment decisions. Throughout the film, she interviews her doctors, and her role as interviewer challenges the traditional doctor-patient dynamic by putting her in a position of authority. She assesses their bedside manner and smirks as she asks them to be brief. Yet few perspectives on Crohn's, other than those of Dana's doctors and her parents, appear in the film, which seems like a missed opportunity. The only time we see Dana outside of her house or a hospital (other than in old home movie footage) is to speak at a fundraising event for Cleveland Clinic. Her social life is only conveyed in photographic montages and old home movies of her childhood. Although Dana's mother discusses her participation in online groups for Crohn's, a discussion of the importance of biosocialities as a form of disability community might have enriched the film.
While Semicolon; offers viewers a compelling portrait of a woman living with a chronic illness, it also participates in a broader tradition of the erasure of the political dimensions of disabled experience. Paula Treichler argues that, in an effort to humanize people with HIV/AIDS in the early days of the global pandemic, popular media often represented the disease as an individual misfortune to be emotionally negotiated by the family in the private sphere (the "human face" of disease) at the expense of showing how political neglect, social stigma, and economic and structural inequalities exacerbated the disease's physical and emotional effects (the "political face" of disease). This, too, resonates with Dana's experience. For instance, Dana's family flies back and forth from Nevada to Cleveland without commenting on the expense of transportation costs to access treatment. We also leave the film without an understanding of the economic costs of Dana's surgeries and treatments or the quality of her insurance coverage. While the costs vary depending on the severity of the disease and the particulars of insurance coverage, the estimated annual cost of medical care for someone with Crohn's disease is nearly $19,000.1 According to Jacquelyn Spencer, manager of patient education and the Information Resource Center at the Crohn's & Colitis Foundation of America (CCFA), insurance co-payments for biologic drugs like Remicade alone can be in the upwards of $2000 to $4000 a month.2 While Dana struggles with the individual emotional decision of whether or not to have an intestinal transplant, the documentary does not tell us anything about the broader constraints on access to the procedure, such as lengthy waits on the organ transplant waiting list or the procedure's cost. Viewers emerge from Semicolon; with a detailed look at the day-to-day physical and emotional challenges of living with Crohn's disease as a white middle-to-upper-class woman, but the film misses a crucial opportunity to connect Dana's personal struggles to the political, economic, and physical issues that confront broader communities of people with Crohn's, especially those with fewer resources than Dana.
Still, it remains important to note that Dana's self-representation challenges stereotypical representations of the "happy cripple" and the "sick girl." Dana's cartoon superhero, "Ostomy Girl," is a delightful homage to grrrl power zines. Dana also uses her dry wit to combat ableist stigma in a conversation with her mother, during which her stoma gurgles. Dana smiles ruefully and clarifies for the audience, "It's not a fart." Although she vows to edit it out of the final cut of the film, the unruly gurgle remains, unleashing a fantastic spree of scatological humor that also leads Dana to reflect on how unpredictable bowels and flatulence makes for awkward socializing. Although Dana does not link her discomfort to gender, this scene provides viewers an opportunity to discuss how gendered expectations of feminine politeness and delicacy might exacerbate her feelings of embarrassment around unpredictable gurgles and excretion. Scatological humor is typically more culturally accepted when it comes from cis-gendered boys. If, as Rosemarie Garland Thomson writes, disability is "a product of cultural rules about what bodies should be or do," those rules include the heteropatriarchal conventions of femininity that contribute to Dana's discomfort with flatulence.3
Margarita with a Straw follows Laila (Kalki Koechlin), a University of Delhi student. As a lyricist and musician in a gigging indie band, Laila has a rich social life with able-bodied and disabled friends, and her parents support her scholastic and artistic ambitions as they lead her from India to graduate school at New York University. Like Semicolon;, Margarita with a Straw represents a young disabled woman's struggles against parental protectiveness, however Margarita with a Straw represents Laila's diverse sexual experiences—ranging from masturbation, to casual sex with men, to a committed lesbian relationship—as crucial to her autonomy. Offering a rare portrait of disability and bisexuality, the film also manages not to glorify romantic love (or monogamy) as essential to happiness or as a panacea for ableism.
Throughout the film, sexuality is a key element of Laila's struggle for autonomy and independence from her mother, Shubhangini (Revathy), who is also her primary caregiver. For example, although Laila and her mother share a warm, loving relationship, Laila asserts her right to privacy when her mother finds pornography on Laila's computer and attempts to shame her. Initially, Laila is attracted to a male, able-bodied bandmate, Nima (Tenzing Dalha). While she contemplates revealing her feelings about him, Laila sexually experiments, occasionally making out with Dhruv (Hussain Dalal), a friend-with-benefits who is also a wheelchair-user. Dhruv playfully jokes about ending up with Laila, but when he senses that her true affections are elsewhere, he angrily accuses her of being attracted to Nima only because he is able-bodied. Although she is furious at the accusation, we are also privy to Laila's private moments, in which she edits her wheelchair out of her Facebook profile picture while engaging in an online chat with Nima. Dhruv and Laila remain friends after the argument, and their encounter is useful in representing the ways in which internalized ableism affects romantic relationships among disabled people. Dhruv's accusation also reveals the ways in which ableism and sexism overlap. Although he finds Laila beautiful, his argument manifests internalized ableist standards of sexual attractiveness and patriarchal privilege. We see this ableism, in part, through his wounded pride, which derives from his assumption that, based on their shared disabled status as sexual outsiders, he would never face a rival for her affections. Although Laila's relationship to her own body seems ambivalent, she rejects the ableism of those who would only see her as pitiable or inspirational. For example, she is initially elated when her band, Tribes, receives an award for their performance, but when the judge reveals that they won not because of their superior performance but because Laila is disabled, she flips off the judge and proudly wheels offstage.
When Laila reveals her feelings to Nima, she is disappointed when her romantic feelings for her bandmate are unreciprocated, but she recovers quickly when she accepts a scholarship to attend graduate school for music at NYU. Her mother moves with her to Manhattan to help her settle in to her apartment and secure the services of a new caregiver. She strikes up a friendship with Jared (William Moseley) an attractive man from her writing class who volunteers to assist her with typing. She also begins a romantic and sexual relationship with a blind woman, Khanum (Sayani Gupta), who is a social justice warrior in New York City. As Shubhangini prepares traditional Indian foods for her daughter, each container lovingly labeled, she struggles with entwined feelings of dislocation—both cultural and emotional—as her daughter embraces the excitement of her newfound autonomy in Manhattan by shopping, bar hopping, going to museums, and hiring a new caregiver.
Here, it is important to note that, in many ways, the film subtly affirms Western exceptionalism by geographically positioning ableism and inaccessibility in India and representing New York City as a haven for the disabled. While the film shows Laila being carried up the stairs to her college classes at Delhi University when the lift is broken, one wouldn't know from Margarita with a Straw that disability activists engaged in a years-long struggle for accessible cabs, or that disability life writing pieces, such as John Hockenberry's Moving Violations, chronicle the pervasive inaccessibility of so called "public" transit in New York City.4 NYU and The Big Apple seem like a land of plentitude—magically free of ableist prejudice, broken elevators, poorly kept sidewalks, or cabs that don't stop for wheelchair-users. Moreover, although Khanum and Laila meet at a protest against police brutality, as non-white queer disabled women, Khanum and Laila do not encounter a single instance of racism and homophobia in "The West." Meanwhile, Khanum's coming out story, which details her Bangladeshi/Pakistani family's intolerance, subtly positions homophobia as an ongoing problem of unenlightened non-Western attitudes.
Despite being in love with Khanum, Laila remains attracted to Jared and has casual sex with him, without telling Khanum. When Khanum accompanies her home to Delhi for winter break, Laila reveals to her mother that Khanum is her lover, and she discovers that her mother has stage four colon cancer. Although her mother initially disapproves of her relationship to Khanum, she eventually apologizes for her intolerance. Laila also confesses her affair to Khanum and asks for her forgiveness. Heartbroken, Khanum forgives her but is unable to continue their relationship. Her mother's funeral is a touching tribute to the complexities of mother-daughter relationships, as Laila, the musician, requests that they play a recording of songs that her mother used to sing as she brushed Laila's hair or washed her.
At the end of the film, Laila ventures out to a salon for hair styling and a manicure. Her friends ask her to go to a movie, but she declines and says she already has a date. Seated alone at a café, Laila initially seems to be waiting for a date. However, in a significant departure from stereotypical portraits of disabled people as tragically lonely and isolated, Laila happily orders a "margarita with a straw" and toasts to herself with a gleaming smile. In this respect, the margarita's straw embodies crip access to pleasure. Laila's self-satisfaction stands in contradistinction her relationship to her body at beginning of the film, when she tries to symbolically edit her disability out of the picture. Margarita with a Straw revels in the polymorphous pleasures of crip sexuality but critically emphasizes self-love as the most important and fulfilling love of all.
Diana Rodriguez, "Managing the Costs of Crohn's Treatment." February 6, 2013 http://www.everydayhealth.com/crohns-disease/managing-crohns-treatment-costs.aspx Accessed 19 August 2016.
Return to Text
Rodriguez, "Managing the Costs of Crohn's Treatment."
Return to Text
Rosemarie Garland Thomson, Extraordinary Bodies: Figuring Physical Disability in American Culture and Literature. New York: Columbia University Press, 1997, 7.
Return to Text
John Hockenberry, Moving Violations: War Zones, Wheelchairs, and Declarations of Independence (New York: Hyperion, 1995).
Return to Text