Academic journal article Exceptional Children

Narrating Self and Disability: Latino Mothers' Construction of Identities Vis-a-Vis Their Child with Special Needs

Academic journal article Exceptional Children

Narrating Self and Disability: Latino Mothers' Construction of Identities Vis-a-Vis Their Child with Special Needs

Article excerpt

Having a child with a disability raises key questions that parents are likely to continue to revisit as their child matures and as the child and family undergo transitions in school and other life experiences. Many of these questions focus on practical concerns: (a) how to teach the child and provide an environment that maximizes his or her development; (b) how to assure that the child receives the services and supports necessary to succeed in school and life outside of school; (c) how to cope with the various demands and expectations that come with having a child with a disability; and (d) how to understand the cause and characteristics of the child's condition. Other questions, however, reflect deeper concerns with meaning and purpose in life: (a) how can I make sense out of why this happened to my child; (b) what does it mean for me and my life; and (c) what is its meaning in the larger world?

How individuals, institutions, and societies create meanings around disability has received some attention in special education research (e.g., Blatt, 1985; Bogdan, Brown, & Foster, 1982; Ferguson & Ferguson, 1995; Taylor & Bogdan, 1989; Wolfensberger, 1975). For the most part, however, studies on parents' responses to having a child with a disability are based on the premise that this event leads to negative outcomes and processes (Gallimore, Bernheimer, & Weisner, 1999; Sobsey, 1996; Turnbull & Turnbull, 1993), such as increased psychological stress, depression, and burden of care (e.g., Blacher, Shapiro, Lopez, Diaz, & Fusco, 1997; Breslau, Staruch, & Mortimer, 1982; Heller, Markwardt, Rowitz, & Farber, 1994). The conceptual approaches and methods employed in these studies are less adapted to uncovering how parents construct personal, social, and religious meanings around their child's disability--meanings that may cast the ways disability has affected them and their family in a more positive light. When methods other than scales that measure depression, stress, or coping are used--such as open-ended interviews that allow parents to narrate their perspectives--we find that families may talk about difficult times and struggles, especially as they recall their initial responses and adaptations to disability, but they do not always, or even primarily, focus on the deficits or pathologies of these experiences. Instead, they often talk about their child's disability in a more positive and meaningful way: as a stimulus for learning life's lessons, becoming more tolerant and less judgmental of others, and uniting the family (Affleck & Tennen, 1993; Patterson & Leonard, 1994; Turnbull, Blue-Banning, Behr, & Kerns, 1986). They sometimes speak of positive or existential transformations that occurred in themselves, in their relationships with others, and in their perspectives on life because of the experience of parenting a child with a disability (Saetersdal, 1997; Scorgie, 1996; Sobsey, 1996). They highlight the strengths of their child while downplaying characteristics that others might perceive as limitations (Harry, 1992; Turnbull & Turnbull).

These types of studies suggest that the narrative form is not only a means parents use to recount their experiences, but also is a significant tool for creating understandings and emotions around disability. By reframing disability in certain ways, individuals can enhance their coping strategies, effect a sense of well-being, and generate an acceptance of disability as a part of life (Traustadottir, 1991; Turnbull, et al., 1993). Because narratives are such a powerful resource, they are an important source of data for examining how parents weave together complex and personal understandings of their child's disability and themselves in relation to it. They become a primary key for viewing this meaning-making process (Lutz & Abu-Lughod, 1990; Miller, 1996).

In this article, we continue these examinations into the ways in which parents come to understand their child's disability and themselves in relation to it. …

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