Fear, Familiarity, and Freedom: Narratives of Breathing, Breathlessness, and Ventilation
摘要
Breathing difficulties are a symptom of several chronic conditions and experiences of disability, including asthma, chronic obstructive pulmonary disease, and neuromuscular disorders. This chapter explores how experiences of breathing difficulties have been narrated by participants in previous research, outlining different approaches to narrative analysis and the themes that shape people’s stories of breathlessness. Analysis of stories of diagnosis and illness experience focus on identity shifts over time; stories of illness are stories of the self. While unanticipated experiences of breathlessness can disrupt a taken-for-granted sense of self, narrative reconstruction allows a focus on the continuing self, who engages in narrative reconstruction to emphasize particular values, for example. Although chronic breathing difficulties may be experienced as disruptive, this chapter will also explore how such difficulties may be anticipated and how individual narratives are situated in the context of public narratives, including within communities. Nevertheless, critical disability theorists have argued for paying attention to other stories of chronic illness, challenging the ableist assumptions of accounts of illness as “personal tragedy” and emphasizing the value in listening to stories of impairment effects. The second part of this chapter focuses on the role of invasive and non-invasive mechanical ventilation for chronic respiratory failure, in order to rethink our assumptions about narratives of breath. While patients’ experiences of mechanical ventilation have been explored, both in clinical and domestic settings, there has been a limited focus on the creative and radical potential for ventilators to allow for different stories of breathing and breathlessness. This chapter reviews research on the lived experience of ventilation, to highlight the potential for a critical narrative approach that encompasses breathing, breathlessness, and ventilation.