Unfitting Stories: Narrative Approaches to Disease, Disability, and Trauma

(Story-)Telling It like It Is: How Narratives Teach at L’Arche

The research presented in this essay illustrates how informal, experiencebased narratives shared among caregivers about individuals, not types or labels, can be deployed as a humanizing complement to formal training. In particular, it shows how storytelling about the particulars of individuals with developmental impairment/disabilities and their everyday desires is shown to be a fluid and effective mechanism of enculturation into the local, moral world of L’Arche, an international, residential care organization with a radically inclusive, relational approach to caregiving and disability . To operationalize the counter-cultural philosophy of L’Arche into quality care, the organization must assist new caregivers to overcome their initial, narrow perceptions of people with developmental disabilities, and does so by enhancing the moral imaginations of new caregivers through narratives . Limitations of the narrative teaching style will also be identified. Research about the conditions of life and care for people with developmental and intellectual impairments/disabilities1 often emphasizes process conditions and structural issues. This essay directs attention instead to the attitudinal conditions which influence quality of life and care: in other words, how people around people with developmental and intellectual impairments/disabilities feel for and care about them as individuals, not just care for them as a category of client. In doing so, a narrative-based teaching approach for the strategic (re)enculturation of caregivers in one organization is elaborated upon, to demonstrate how it shifts cultural attitudinal frames and results in improved quality and mutuality of care. Hilde Lindemann Nelson has written of the need for a better understanding of how to put narratives to “moral use” to do “moral work” 159 pamela cushing (Story-)Telling It like It Is How Narratives Teach at L’Arche (2002b). This essay illustrates how narratives are used as strategic, cultural tools to do the moral work of countering prevailing negative stereotypes of disability. Storytelling among caregivers about the people with developmental disabilities with whom they share daily life can have a radically humanizing effect on care relations if done within a progressive, ideological framework.2 Particular kinds of narratives can change and shape how new caregivers experience people with developmental disabilities and how they imagine supporting them. The research results presented here also suggest that such (re)shaping of its caregivers’ perceptions, away from mainstream standards, is a necessary prerequisite for the mutually respectful care relations that L’Arche advocates. These newly shaped perceptions create a strong foundation for quality of care, and encourage shifts in the conventional caregiver–client power imbalance, rather than reproducing it. Project Background The research presented here draws on over a year of anthropological fieldwork gained through living in L’Arche community homes across Canada. L’Arche was formed in the 1960s in France and Canada by Jean Vanier, as a social justice–oriented response to the ubiquitous sub-human conditions then found in large institutions (Vanier 1995). It has since grown into an international organization, with 130 alternative caregiving and life-sharing communities for people with developmental disabilities in many countries (Vanier 1998). Their relational ethic of care involves most community members3 living together in the homes, sharing meals, common space, and social time.4 L’Arche aims to work against processes of exclusion by promoting greater public awareness and acceptance of the intrinsic and social value of people with disabilities (L’Arche 2006). They believe that, for many people, genuine inclusion is often better facilitated through rich social relations, belonging, and opportunities for growth than through the material trappings of independent living (Cushing 2003b). Critical histories of the cultural construction of developmental disability in the twentieth century have revealed how stigma and negative perceptions of disability have been built up, often intentionally, and often by professionals in the field (Trent 1994, Simmons 1982). Many scholars and activists have been calling for a reversal of these attitudes for decades, but changing deeply held public perceptions is difficult, and, as the prevailing existence of discrimination shows, that challenge has not yet been adequately addressed (Braddock and Mitchell 1992). 160 representing the subject Active culture-shifting is needed, therefore, in order to alter the publicly perceived negatives of life with a developmental disability, and to encourage social inclusion of people as they are. Policy-makers, on the other hand, have appeared in the past to believe that merely pushing idealistic aphorisms and rules about “respecting and empowering” the client onto front-line caregivers is sufficient to create change. In fact, such...