A goal of living as well as possible is central to practice and research with young adults living with home mechanical ventilation (HMV). Significant effort has been put into conceptualizing and measuring the quality of life (QOL) as a proxy for living well. Yet, dominant understandings of QOL have been influenced by normative, ableist, and biomedical discourses about what constitutes a good life that, when applied in practice and systems with those living with HMV, can contribute to exclusion and constrain (...) opportunities to live well. Inquiry into what certain understandings of living well can do is critical to opening up possibilities to reimagine living well with HMV. This paper draws on findings from a critical narrative inquiry that explored the experiences of five young adults (ages 18–40 years) living with HMV. Data were co‐constructed virtually through an initial interview and photo‐elicitation using participant‐generated photographs. A critical narrative analysis of participants' stories made visible the ideological effects of ableist, biomedical, and individualist discourses and how the young adults reproduced and resisted these dominant discourses. Their stories further opened up possibilities for nurses and other healthcare providers to see living well and QOL differently. (shrink)

The contemporary emergence of the concept ‘debility’, which pertains to a broad swathe of humanity whose ordinary lives simply persist without ever getting better, shares a time span with an acute critique of neo-liberal biopolitics. Where capital has historically relied on a population that through its labour necessarily becomes debilitated, the newer model of understanding references the intrinsic profitability of debility itself. The two dimensions overlap and co-exist, but what I shall pursue here are the implications of recognising that, at (...) the most fundamental level, it is in the interests of neo-liberalism to produce and sustain bodies as debilitated and therefore susceptible to a range of market commodities that hold out the promise of therapeutic interventions into the relative failures of physical, cognitive and affective embodiment. In previous work, I have argued strongly for the inherent vulnerability of all bodies, but in considering here a more overtly politicised context, it becomes possible to readdress the questions posed by Jasbir Puar: ‘which bodies are made to pay for “progress”? Which debilitated bodies can be reinvigorated for neoliberalism, and which cannot?’ And at the present moment, writing at a time of imposed austerity, I would add, what, if anything, is lost in the deployment of the term debility instead of disability? (shrink)

This article reflects on an ongoing artistic research practice that deals with sound, gender, power, spatiality, and human–nonhuman entanglement. Sparked by a sound design for a less crunchy “lady-friendly” crisp, the research inquires the relationship between gender and sound at human–nonhuman encounter through making and thinking. Drawing on queer theory, sound studies, and posthumanism, it aims to transcend essentialist, vision-focused, and anthropocentric conceptualisations of gender and, as an insight gained from working with low-frequency sound waves, it reflects on sound as (...) material-philosophically demonstrating human–nonhuman interconnectedness. The latter, as this article proposes, may encourage us to horizontalise hierarchies between the human and nonhuman. Finally, this text situates sonic thinking as a mode of trans*formative thinking: a process-oriented philosophy that aims to embrace the messy, queer ways of human–nonhuman relationality, which characterises a vibrant space from which this artistic research will further develop. (shrink)

John Bayley’s Elegy for Iris, his memoir about living with Iris Murdoch after the onset of dementia, unsettles models of mind and agency that ignore human relationship, dependency, and the vulnerabilities of the cared for and the carer. Experiencing Iris as ambiguously absent and present while he attentively cares for her, Bayley frames his memoir as an elegy, a reflection on love and loss that conventionally represents two subjects—the author and the one he lost. Bayley’s acts of care and his (...) stories about his wife, both as she was and as she has become, sustain her moral worth as a person. Writing as an elegist, a survivor entitled to be heard, Bayley moves his experience of caring and loss from personal to social realms, from speaker to listener, opening ethical space for consolation and for social responsibility for the vulnerable. (shrink)

This article explains how the most recommended treatment for obstructive sleep apnea, the continuous positive airway pressure device, acts and interacts with users’ bodies, sleep partners’ bodies, and cultural discourses to produce emotions and practices that generate the subjectivity of a disabled or abled person. Drawing upon in-depth interviews with OSA patients, this article illustrates how introducing CPAP devices into patients’ lives may disturb their sleep and breathing, diminish their independence, disfigure their appearance, and problematize intimacy with bed partners, thereby (...) disrupting both the fleshy body and the culturally preferred image of a healthy, independent, and attractive individual. In response, many patients reject this treatment. ability as a subjective state is shown to emerge from associations in a network composed of heterogeneous entities that have agency. That is, disabled subjectivity emerges when the device prevents individuals from accomplishing what they consider to be the essential and socially significant aspects of sleep and primarily its disembodied and interembodied aspects. (shrink)