Continuing our summer roundups, today we are highlighting a second set of essays from our Inhabitable Worlds series, brought to us by editors Michele Friedner and Emily Cohen. Inhabitable Worlds is a series that examines the theoretical tools and approaches that scholars bring to the study of disability in the social sciences and humanities.
“The above-mentioned strategic use of the certificates implies that governmental regulations as to whom is entitled to travel in the compartments often do not suffice and are sometimes overruled as the space is governed by the passengers themselves. In these train compartments assigned to disabled people, informal rules for use of space are created, reproduced and challenged. The diversity of the passenger body leads to the production of hierarchies when negotiating (and arguing about) who can enter the compartments and who can not, who can sit and who should stand, and where they should sit or stand (in the compartment or near the doors). These hierarchies are general but not overpowering directives with regard to entitlement to space in the compartments, produced by diverse commuters. There is a tension between formal and informal rules as the produced hierarchies are mediated, but not dominated by the power of medical and disability certificates.” —Annelies Kusters
“Living with an illness often conjures discourses of a losing battle and suffering. What is less evident in the literature is how people can live with an illness, rather than despite it. In this article I discuss certain practices that my mother and people around her mobilised in order to lead to what I have previously referred to as the good, or better, life (Sakellariou, 2015a). Practices of care involve the enabling of processes through which the person survives, both physically and metaphysically; in other words, they enable the creation of an inhabitable world… Here I tell a story about trying to create a way of eating by remaking what the meaning of eating and food are in acts of caretaking. I see this remaking as a form of creating an inhabitable world. By focusing on concrete practices of care, and describing, however incompletely, what an inhabitable world can look like, especially in relation to food, I aim to raise the importance of practices of care of the self and care of the other for medical anthropologists. I also aim to draw attention to the notions of function and ability, and discuss what it means to can or to cannot eat.” —Dikaios Sakellariou
“By choosing to use ecological theories to think about war contamination, I am making a claim about how war waste transforms social and material systems. Ecologies describe the complex relationships between entities and an environment over time. Ecological theories excel at describing the material conditions that enable relations and the multi-scale, long-term transformations of these systems. War contamination is already represented in ecological terms by clearance operators (i.e. hazardous areas, waste, contamination, latency, residual risk)…In Laos, what does this ecology look like? Though exact numbers are up for debate, the Lao government estimates that 25% of all villages are heavily impacted by explosive war wastes (National Regulatory Authority 2010). Villages in the most contaminated parts of Laos are often called bomb villages. I submit that they are not only bomb villages, but also bomb ecologies, or more specifically, cluster bomb ecologies. “ —Leah Zani
“It was Vakas who first led me to consider the digital as an object of study rather than a mode of communication while I was in the field. Because he speaks slowly, and with a degree of difficulty, he sometimes prefers to share information online. When I hadn’t known him for very long, one afternoon I asked him a question in a group environment, and he suggested that he would send me an explanation online, rather than try to give an answer verbally.
The digital option – messaging on VKontakte – offered a shortcut in what disability studies scholars call “crip time,” the elongated temporal frame in the performance of disability (Kuppers 2014; Hickman 2014). Crip time is an element of disability theory that is important for understanding the experience of technology in relation to disability or non-normative embodiments. Walking, talking, moving from one space to another, getting together with friends, or negotiating (in)accessible networks: all take on a particular temporality when one occupies a non-normative embodiment. To illustrate this contrast with cultural norms, as a quick way to winkingly let one another know what is at play, the anglophone disability studies community has come to call this non-normative temporality ‘crip time.’…The configuration of crip embodiment and digitally enabled social selves that my interlocutors describe is a unique configuration of technology, architectural infrastructure, and cultural and personal expectations of self-making. The social world-making that my interlocutors, including Vakas and Alina, engage in can be thought of as both a process and a state of pixelization.” —Cassandra Hartblay
“Media and other outputs…help construct a Down’s syndrome public in which new social imaginaries of human difference are erected and people who have Down’s syndrome, together with their parents, are (re)constructed as occupying ‘inhabitable worlds’, giving them a future as well as a meaningful present…This imaginary and formation of a Down’s syndrome public – enabling what Ginsburg and Rapp (2015) call an ‘existential repositioning’ – is in tension with the troubled relationship that the condition holds with prenatal technology. What I have shown here, to put it simply, is that there are two competing ways of enacting Down’s syndrome (at least in my own research and observations). Within the medical realm, where discourse shapes how people come to view and experience bodily difference, the condition is configured as a negative outcome. Among parents of those with Down’s syndrome, everyday life is constituted – despite a range of clear and complicated challenges – as celebratory, life-changing (for the better), and not the disaster it was initially believed to be…The existence of two orientations to Down’s syndrome, as outlined in this article, is undoubtedly a simplification of an immensely complex issue and I certainly do not mean to suggest that these are its only two orientations. However, they are two which have appeared in my own work. Thus, by troubling and dissecting the taken-for-granted category of one of the most common yet complex genetic conditions, we can see how ‘Down’s syndrome worlds’ can be made both inhabitable and uninhabitable.” —Gareth Thomas
- Summer Roundup: Inhabitable Worlds, Part One
- Inhabitable Worlds: Troubling disability, debility, and ability narratives
- On dialogue: disability studies and science & technology studies
- Pixelization in Crip Time: Disability, Online Sociality, and Self-Making in Russian Apartments
- The broad clinical gaze in paediatric deep brain stimulation