Mediating the Rupture of Disability? Looking at and with the Group
From the Series: Disability as Rupture
From the Series: Disability as Rupture
In 2018, I was drinking mint tea in a Moscow café with a research participant named Margarita. Margarita worked for an NGO founded by disabled people. It primarily provided online services: matching volunteers with those who needed errands run, offering legal consultations, and posting job adverts. Sometimes, the NGO organized in-person events. Margarita was telling me about one: a small group tour along a standard tourist route through the center of town. In Margarita’s telling, as the group moved through town as “such a crowd,” this excursion became a kind of protest. She described onlookers turning around to stare: “It was such a huge, varied (raznaia) group of people in the very center [...] they were all shocked.” Margarita said that these stares made her “actually want to go further—let them watch.”
Such stares are signs of rupture: the friction and even collapse of “normal order” which is imputed to disabled people as they misfit in spaces not designed for them (Garland-Thomson 2011). Moscow’s built environment, including its housing stock, is often inaccessible or difficult to navigate (Hartblay 2019). Even in a physically accessible locale in the city, disabled people may be met with discrimination, perhaps even asked to leave cafés, cinemas, and restaurants (Verbilovich 2017). When acquaintances asked about my research, some responded to my explanation that I was researching disability organizing with denial or erasure: “Oh, I think you have more disabled people in the U.K. We don’t have many here.”
As a group of disabled people move through the center of Moscow, the viewer is caught “off-guard with an unfamiliar sight” and stares accordingly (Garland-Thomson 2009, 7). Accounts analyzing staring and other forms of disability discrimination in the public sphere often theorize through the experiences of disabled individuals (e.g., Garland-Thomson 2011; Hartblay 2020; Montgomery 2001; Siebers 2004). Here, I begin to consider how moving through public space as a group of individuals, rather than an individual, might transform disability’s presence.
Margarita narrativizes the group as magnifying the rupture of disabled people’s appearance in public. It is in response to the stares that she defines the group excursion as becoming a defiant protest. She sees the excursion as a means of asserting disabled people’s presence and will. This echoes Garland-Thomson’s conceptualization of what starees “can show us all,” namely that a broader range of people and their bodies “can and should be seen in the public sphere” (2009, 9). As Margarita says: “The excursion demonstrates “that people with disabilities also can go on excursions, want to do that, and so on.”
However, Margarita herself neither identifies nor was identified as disabled. As an individual, she was not the target of the stares. Once she leaves the group, her presence ceases to be defiant. Sandahl once described a theatre performance in which “[her] impairment was [...] put to use to create meaning, meaning over which [she] had little control” (2005, 620). I did not interview other people who participated in the tour. Did they see their group as performing a protest march, a tour, or both?
Some months after meeting Margarita, I spoke with Aleksandra at her home. Aleksandra had founded her own NGO, in part to campaign for access to medication needed by her child and others with the same diagnosis. As primary care giver to her disabled child, Aleksandra could not leave the child alone. Leaving the house together meant entering a hostile environment. In addition to built inaccessibility and lack of suitable spaces for medical care and rest, Aleksandra described how she was worn down by stares and negative remarks in public. She had stopped attending church with her child for the latter reason. Here, Aleksandra takes control over rupture by retreating from encounters where it might occur.
For Aleksandra, in contrast to Margarita, another way of controlling and mitigating rupture is indeed by moving as a group. Her NGO organizes family summer camps. She described mothers cramming together on hotel beds to talk late into the night. When they head out to the pool or to eat, Aleksandra saw the group as protecting from rupture:
Say you go somewhere alone with a disinhibited child, everyone is going to tell you off, everyone’s going to kick you out of there… And then basically you’re not going to want to go out anywhere after that, you’re going to sit alone and grieve. But if there are five kids like that, ten kids like that, then no one is going to tell you off and no one is going to point at you.
A group of five or ten children takes up more space and is likely louder than two people. Yet, for Aleksandra, it is as part of this group that she becomes unremarkable.
A group mediates how disability becomes present. For Margarita, the group magnifies the very rupture that some actors seek to evade. It renews an opportunity to claim rupture as resistance. For Aleksandra, absorption into a group protects from rupture. Mia Mingus writes, “I am always so astounded at how hard it is for disabled people to stay together, literally. I watch how the world separates, isolates and divides us, so that we cannot move together” (2010). In the face of how “the world separates [...] us,” the group is transformative. To look with the group, though, requires us to attend to actors’ intent and positionality—in relationship to other group members and beyond—as well as to understand that actors’ navigation of rupture may include its evasion as well as its instrumentalization as a form of defiant action.
Garland-Thomson, Rosemarie. 2009. Staring: How We Look. New York: Oxford University Press.
Garland-Thomson, Rosemarie. 2011. "Misﬁts: A Feminist Materialist Disability Concept." Hypatia 26, no. 3: 591–609.
Hartblay, Cassandra. 2019. "After Marginalization: Pixelation, Disability, and Social Difference in Digital Russia." South Atlantic Quarterly 118, no. 3: 543–572.
Hartblay, Cassandra. 2020. "Disability Expertise: Claiming Disability Anthropology." Current Anthropology 61, S21: S26–S36.
Mingus, Mia. 2010. "Reflections On An Opening: Disability Justice and Creating Collective Access in Detroit." Leaving Evidence. Retrieved August 17, 2021.
Montgomery, Cal. 2001. "A Hard Look at Invisible Disability." Ragged Edge Magazine Online 2.
Sandahl, Carrie. 2005. "From the Streets to the Stage: Disability and the Performing Arts." PMLA 120, no. 2: 620–624.
Siebers, Tobin. 2004. "Disability as Masquerade." Literature and Medicine 23, no. 1, 1–22.
Verbilovich, Volha. 2017. "Rezhimy i formaty vidimosti kategorii invalidnosti v publichnoi sfere [Modes and formats of visibility of the category of disability in the public sphere]." Vestnik Tomskogo Gosudarstvennogo Universiteta. Filosofia. Sotsiologiya. Politologiya. [Bulletin of the Tomsk State University. Philosophy. Sociology. Politology] 37.