Sabbatical is over, classes are in full swing, and I am finding less time to write.  So I am planning on a series of short posts (which is better anyway for a blog) that summarize bits and pieces of my reading and thinking about narrative.  These are the sensitizing concepts for my analysis of blogs and I hope that pushing them out in pieces will help me pull together the whole.  This post:  a summary of what I taken from the literature on illness narratives.

Many of the blogs I read started at around the time of a child’s autism diagnosis and one purpose of the blog was to make sense of this new information.  For those whose stories began this way, autism was akin to illness, and this framing was my first stab at making sense of these stories.

There is a longstanding tradition among sociologists, anthropologists, and communication scholars of examining how illness can disrupt the ill person’s understanding of who she is, where she has been, and where her life is headed (Bury, 1982). Biography and identity are closely intertwined. A body is required to enact valued identities, so if one’s body cannot perform, this disconnects the present from the past and up-ends expectations for the future. Consequently, in addition to the work of managing illness and participating in daily life, those with chronic illness must also engage in biographical work to restore a sense of continuity between who they have been, who they are now, and who they can expect to be in the future (Corbin & Strauss, 1987).  This biographical work has a moral dimension. Ill bodies and the identities and biographies associated with them are devalued, so that making sense of illness is also making sense of one’s proper place in the world (Williams, 1984).

Narrative can be a potent form of biographical work. Williams (1984:197) defined narrative reconstruction as “an attempt to reconstitute and repair ruptures between body, self, and world by linking-up and interpreting different aspects of biography in order to realign present and past and self with society.” In his review of research, Hydén (1997) concluded that illness narratives transform illness events, reconstruct life history, explain the illness, assert identity, and transform individual experience into a collective phenomenon.  Through narrative, individuals make sense of experience and make that experience available to others (Frank, 2013).  This sense-making frequently stands in contrast to reductive narratives that focus only on biomedical cause and treatment.

This model gives some purchase on the blogs I am reading, particularly in posts from blogs that started in the early 2000s and followed closely on an autism diagnosis.  Is autism a narrative disruption?  For many of the authors whose blogs I have been following, the answer is clearly, “yes.”  Many indicate that making sense of this unexpected turn in their biography is one of the reasons they started to blog.  But in the process of making sense of an unexpected diagnosis, these stories also raise unexpected difficulties for the illness narrative tradition as I know it.

Illness narrative research has emphasized the power of story for individual sense-making and the need for understandings that go beyond what a strictly biomedical account alone can provide.  In seeking meaning that goes beyond biomedical explanation, stories of illness help their tellers figure out where they fit in the social and moral structure.  As such narratives are also a locus of the individual ethical responsibility we have to testify and bear witness to suffering (Frank, 2013).

This is one place where applying this conceptual structure to blogs by mothers of autistic children raises as many questions as it answers.  Not only is there meaning beyond the biomedical narrative; there is meaning that actively contests it (Broderick & Ne’eman, 2008).  Whether autism is akin to illness is far from settled, and presuming it will disrupt expectations or create suffering takes for granted an assumption of neurotypicality.   Are disruption or suffering necessary features of autism as an impairment or do they derive mostly from going through life in social and built environments that disable autistics by a failure to understand and accommodate? If there is disruption or suffering, to whose experience should we testify and witness—that of the mother or the child?  And is a story of disruption or suffering the story that most needs telling in order to fulfill our ethical responsibilities or to create a more just world?  Mothers’ stories of how they make sense of a child’s autism diagnosis push these questions front and center.

The relationship between “illness” and “disability” is conceptually contentious.  Dominant narratives of illness and of disability often share an emphasis on biomedical explanation and framing, with corresponding plot lines that revolve around cause, treatment, and cure.  Alternative narratives of disability (and, for that matter, some alternative narratives of illness) contest the assumptions that disabled bodies need fixing or that disability is necessarily a disruption of a normative identity or biography. Perhaps this accounts for why the study of disability narratives has more often focused not only on how they enable individual sense-making and moral self-presentation, but also on their political ramifications. Narratives about disability provide a basis for identity and action, helping form or strengthen collective identities, and providing a counter-plot to dominant cultural understandings of disability (Malhotra & Rowe, 2015).

Another gap I find when I try to apply the illness narrative tradition to these mothers’ stories arises because these were stories told by mothers of autistic children, and not by the children themselves.  Although the impact of illness on family members and caregivers is widely acknowledged, their narrative reconstruction has seldom been examined. In two studies that did focus on care-giver narratives, making sense of relational contradictions was a central theme.  For example, Adamson and Donovan (2005) found that although caregiving for elderly adult relatives was a disruption of daily life and future expectations (particularly for younger caregivers), it was also consistent with previous relational roles and cultural identities that made giving care virtuous.  Likewise, Harden (2005) found parents narratives about caring for children with mental illness felt moral responsibility for care, but also recognized how this collided with self-care and with a child’s autonomy.  Both studies demonstrate that making sense of relationship is as important as making sense of illness and its impact on individual identity.

Making sense of one’s role as parent of an autistic child has a larger, socio-political dimension as well. This is is evident in two studies of how parents of autistic children narratively reconstruct valued identities and biographies.  For example, Gray (2001) identified accommodation narratives which gave a biological explanation for cause that exonerated parents from responsibility for their child’s autism; resistance narratives that emphasized a child’s strengths and resisted the expectation that parents should grieve and surrender to biomedical information and treatment; and transcendence narratives in which religious faith gave meaning to suffering and a church community that provided acceptance. Gray observed that each of these narratives drew upon a culturally sanctioned narrative of science, politics, or faith, and in so doing, allied the teller with a community (a treatment center, advocacy groups, or church). Birmingham (2010) examined how two mothers of autistic children presented themselves as “good” mothers of “good” children. Both felt their experiences departed from the expected biography of motherhood but each utilized recognizable cultural forms (the genres of romance and irony) to structure their counter-narrative. One mother’s story resembled the archetypal romance in which she overcame adversity and fought evil, whereas the other mother was an ironic protagonist who attempted to keep her balance while grappling with absurd institutions. These narrative structures gave mothers a sense of “meaning, order, and direction in a life lived outside the cultural narrative” (Birmingham, 2010, p. 230).

These studies demonstrate how parent stories can embrace or hold at arm’s length culturally sanctioned narratives and the social and political stances they articulate.  How and when might recognizing the relationship of one’s individual story with larger cultural narratives produce a desire to change, rather than accept, the terms of the dominant narrative? The character of mother-as-ally-to-autism-acceptance is not as well-worked out as the dominant cultural models for warrior moms or saintly moms.  For those bloggers who are working out what a story can look like when told as both ally and mom, they are not only making sense of their own identity and relationship, but also creating story arcs that may have utility not only for narrating autism, but also for narrating other experiences.

References:

Adamson, J. & Donovan, J. (2005). ‘Normal disruption’: South Asian and African/Caribbean relatives caring for an older family bember in the UK. Social Science & Medicine, 60, 37-48.

Birmingham, C. (2010). Romance and irony, personal and academic: How mothers of children with autism defend goodness and express hope. Narrative Inquiry, 20, 225-245.

Broderick, A. A., & Ne’eman, A. (2008). Autism as metaphor: narrative and counter‐narrative. International Journal of Inclusive Education, 12, 459–476. https://doi.org/10.1080/13603110802377490

Bury, M. (1982). Chronic illness as biographical disruption. Sociology of Health & Illness, 4, 167-182.

Corbin, J. & Strauss, A. L. (1987). Accompaniments of chronic illness: Changes in body, self, biography, and biographical time. Research in the Sociology of Health Care, 6, 249-281.

Frank, A. W. (1995). The wounded storyteller: Body, illness, and ethics. Chicago: University of Chicago Press.

Gray, D. E. (2001). Accommodation, resistance and transcendence: Three narratives of autism. Social Science & Medicine, 53, 1247-1257.

Harden, J. (2005). Parenting a young person with mental health problems: Temporal disruption and reconstruction. Sociology of Health & Illness, 27, 351-371.

Hydén, L. C. (1997). Illness and narrative. Sociology of Health & Illness, 19, 48-69.

Malhotra, R., & Rowe, M. (2015). Exploring disability identity and disability rights through narratives: Finding a voice of their own. Abingdon, UK: Routledge.

Williams, G. (1984). The genesis of chronic illness: Narrative reconstruction. Sociology of Health & Illness 6, 175-200.