Storying Disability and Impairment: Retrospective Accounts of Disabled Family Life

Goodley, Dan; Tregaskis, Claire

doi:10.1177/1049732305285840

Cited by 84 publications

(72 citation statements)

References 25 publications

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“…Shock and awe: 'I was in a different world' A common theme in experiences with testing and diagnostic procedures for impairment is that parents are often able to reconstruct these events in great detail as if it happened only yesterday (Bjarnason 2008;Goodley and Tregaskis 2006). Every parent we talked to took us back in time to a moment of confusion and uncertainty when suspicion of hearing loss of the child was communicated.…”

Section: Resultsmentioning

confidence: 96%

“…In the light of recent studies pointing to the ways in which parental perspectives contribute to the social fund of knowledge (for example, Rapp and Ginsburg 2001), parents can no longer be viewed merely as passive recipients of care and in need of social support (Van Hove et al 2009). Dynamic social constructs within experiences of transition to parenthood in cases of young children identified with a label are increasingly studied (for example, Goodley and Tregaskis 2006;Goodley 2007;Clavering, Goodley, and McLaughlin 2006). By moving parents as nurturers and advocates to the centre of the disability debate (Kelly 2005) we encounter what Larson (1998) and Landsman (2003) describe as a paradox in negotiating parenthood.…”

Section: Introductionmentioning

confidence: 99%

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The roller-coaster of experiences: becoming the parent of a deaf child

Bosteels

Hove

Vandenbroeck

2012

Disability & Society

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When early testing indicates a hearing loss, parents find themselves on a rollercoaster of experiences leaving little time or space for reflection. This study is based on interviews with families in the Flemish region of Belgium, one of the earliest in the world to introduce universal neonatal screening for hearing loss. Starting from a phenomenological approach, we explore parents' accounts of their experiences in order to uncover the meanings of early parenting of a child identified with a label. Soon after birth, these parents encounter a different world in which intertwined discourses construct parenthood with a deaf child. During the process of becoming a parent, representations of deafness as impairment were omnipresent. In contrast to a medical and technological perspective that insists on the need to intervene as fast as possible, it is argued that the private and social implications of rapid intervention require explicit consideration.

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Section: Resultsmentioning

confidence: 96%

Section: Introductionmentioning

confidence: 99%

The roller-coaster of experiences: becoming the parent of a deaf child

Bosteels

Hove

Vandenbroeck

2012

Disability & Society

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“…Persons with disabilities are viewed as an oppressed minority group that must advocate and struggle for equality. In this model, it is society's barriers and attitudes toward disability that need to adapt, not the individual who has the impairment [Dowling and Dolan, 2001;Brett, 2002;Goodley and Tregaskis, 2006]. For example, Groce [1985] provides a striking case of community adaptation to deafness and inclusion of the deaf on Martha's Vineyard Island.…”

Section: Cultural Models and Cultural Productions Of Disabilitymentioning

confidence: 98%

Sociocultural studies of families of children with intellectual disabilities

Skinner¹,

Weisner²

2007

Ment. Retard. Dev. Disabil. Res. Rev.

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This article reviews recent sociocultural studies of families of children with intellectual disabilities to introduce the range of research conducted from this perspective and to highlight the methodological, conceptual, and theoretical contributions of this approach to the study of mental retardation. Sociocultural studies examine families within their cultural, historical, and sociopolitical contexts. This type of research is comparative across different cultural groups, but is not limited to such comparisons. Sociocultural studies use varied theories and methods, but they share a focus on families' coproduction of meanings and practices related to intellectual disability; families' responses and adaptations to disability; and how their understandings and experiences are shaped within larger social institutions and inequities. Sociocultural approaches take into account community contexts that matter to families with members with mental retardation or developmental delay, and they examine the broader systems that define and position individuals with disabilities and their families. As a whole, these studies provide a more experiential and holistic view of families' beliefs and adaptations within sociopolitical worlds, and offer new tools by which to study the families of children with developmental delays within and across different cultural groups.

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“…Several studies have theorized that families of a person with intellectual disability construct and collaborate their understandings of intellectual disability by the biomedical and sociocultural concepts (Dowling and Dolan, 2001;Goodley and Tregaskis, 2006;Weisner and Skinner, 2007). The biomedical model enlists the beliefs that disability is seen before the person and the individual is often delegitimatized by medical and aetiological discourse.…”

Section: Biomedical/sociocultural Perspectives Of Carementioning

confidence: 99%

Transcultural care and individuals with an intellectual disability

Crotty

Doody

2015

J Intellect Disabil

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Healthcare delivery today reflects a history of change, which has responded to lifestyle changes, cultural diversity, population needs and expectations. In today's health-care environment it is crucial for health-care professionals to be mindful of cultural factors that affect health. These factors include the intricate interdependent biological, intellectual, psychological, social and spiritual needs of the individuals they work with. However, challenges exists for those who provide healthcare to people with intellectual disability. This article presents the transcultural care challenges for people with intellectual disability, through highlighting the biomedical/sociocultural perspectives of healthcare, communication and inequality experienced by those with intellectual disability. As a population group, people with intellectual disability can often be considered part of a larger culture rather than a culture within itself, and this article endeavours to emphasize that intellectual disability is in itself a coterminous culture. By highlighting intellectual disability as a cultural community within a larger community, requiring a transcultural response to care on several levels healthcare professionals can provide culturally compatible care to those with intellectual disability within a transcultural framework to augment a person-centred approach to care Keywords transcultural care, intellectual disability, communication, cultural models, inequity IntroductionPeople presenting with an intellectual disability remain among the most vulnerable members of society and often face many barriers in healthcare (Emerson and Baines, 2010;O'Hara, 2008;Leeder and Dominello, 2005). The aim of transcultural care is to provide culturally congruent healthcare. Transcultural care transcends all diverse ethnic backgrounds and cultural attributes and focuses primarily on the individual, thereby allowing transcultural care to be correlated with the provision of person-centred care for people with intellectual disability as a heterogeneous culture within a culture. This notion is supported by the Health Service Executive (2007) which recommends providing culturally aligned care to people with disabilities and highlights the importance of implementing and providing appropriate individualized care to not only individuals from diverse ethnic backgrounds but already established minority groups such as people with intellectual disability. Healthcare delivery today reflects a history of change, which has responded to lifestyle changes, cultural diversity, population needs and expectations. (Ham et al., 2012;Rebair and Parker, 2013;Shi, 2012). Thus, acknowledging the amalgamation of multifaceted elements influencing and predisposing a person to factors that affect their health. Such factors include the intricate interdependent biological, intellectual, psychological, social and spiritual needs of the individual (Giger and Davidhizar, 2004;Naidoo and Wills, 1997). In essence, this places a person within the context of a culture and ...

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Storying Disability and Impairment: Retrospective Accounts of Disabled Family Life

Cited by 84 publications

References 25 publications

The roller-coaster of experiences: becoming the parent of a deaf child

The roller-coaster of experiences: becoming the parent of a deaf child

Sociocultural studies of families of children with intellectual disabilities

Transcultural care and individuals with an intellectual disability

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