There is a long tradition of memoirs or other personal narratives by parents and other family members who have a child or other relative with a disability. As with any similar genre of literature, these personal accounts vary greatly in both style and quality. Many of these published stories become meaningful sources of inspiration and support to other families in similar circumstances. Others can seem maudlin or self-indulgent; with little reflection or insight to offer. Most fall somewhere in between. However, beyond their value to other families or as testimonials to one aspect of the human condition, these family narratives have remained on the edges of research into the effects of disability on parents and other family members: anecdotal accounts to be treated gingerly by scholars as suggestive at best and misleading or skewed at worst. This paper will approach these narratives as an under-utilized source of data for the study of the meanings and effects of disability on parents and other family members. The paper will begin by examining the genre itself and review the history and influence of such published accounts within the disability community. The review will then discuss the methodological problems that scholars confront if they want to use these accounts as an additional source of data in research on families. The authors of such accounts, for example, represent only a narrow sample of families. The paper will argue, however, that by using discursive methods of document analysis within the research traditions of qualitative research generally (a blend of symbolic interactionism and narrative analysis, specifically), this body of literature may be analyzed systematically for deepened understanding of how the meaning of disability emerges within the family context.

The paper will do a comparative analysis by looking at a purposeful sample of family narratives written in different historical eras. While the research is still being completed, the current plan is to use the decade of the 1970s as a rough dividing line, the paper will compare narratives written in two different historical periods. Within these two groupings, the paper will look at narratives dealing with a variety of disability categories, and – to the extent possible – variations across categories of race, class, and gender. A third group of literature may be created for narratives written the last decade or so. This third category would allow the influence of the disability studies perspective upon the families writing of their experiences to be examined more explicitly (Michael Berubé’s Life As We Know It is perhaps the best known example of this (Berubé, 1996)). One variable of particular emphasis will be the relationships of the author to the relative with the disability. Most of these narratives are written by mothers. A smaller, but steady, stream has also been produced by fathers (e.g. Collins, 2004; Deford, 1997; Reston, 2006; West, 1970). However, an increasing number of these memoirs come from siblings of the person with the disability (e.g., Simon, 2002; Strohm, 2005). Within these memoirs, what thematic differences emerge, if any, when the nature of the relationship with the disabled person changes within the family system? So, the paper will try and interweave the changes over time and relationship within the context of an evolving social narrative about the meaning of disability itself. Finally, the review will conclude with a proposal for researchers and teachers to draw more fully on both the creation and the analysis of such personal accounts for interpreting how the meaning of disability evolves both within and across families. How do published narratives compare to unpublished accounts found in oral histories, interviews, diaries, or other formats of preserved family perspectives? How do such narratives compare with the equally large genre of personal narratives written by disabled people themselves? How can we as educators use this genre with students to frame the meaning of disability in way that is simultaneously revealing of the social and the personal dimensions of the disability experience?