The Experience of Disability from the Perspective of Parents of Children with Profound Impairment: Is it time for an alternative model of disability?

This article considers the significance of a model of disability in relation to the child with profound impairment and examines the individual and social models of disability in connection with this. It is argued that although these two models cannot be completely dismissed, the models largely ignore the experience and perspective of the profoundly impaired child, their parent(s) and family. Following in-depth interviews with four parents I attempted to elicit the experience of disability from this perspective. I invited the parents to tell me the ways in which they experience disability, how they viewed the nature and cause of disability in their lives and the relationship between themselves and the various professionals involved in the care of their child. This article endeavours to implement the interview 'findings' to inform an alternative model of disability, the 'Alliance' model, which is briefly discussed and critiqued.     

Marital Therapy and Feminism

The authors examine first the meaning ascribed to gender behaviour and the impact this has on couples' struggle to evolve a marital structure that can equitably meet their needs. The roles played by counsellors who inadvertently reinforce sex-role stereotyping in their counselling is also described and case-discussion in literature where sexism prevails will be presented. Alternative ways of helping couples discover their own fit without appealing to gender behaviour as a structural social tool will be developed. Attention is drawn to the necessity for counsellors to first question their own values about gender behaviour, without succumbing to social definitions.     

Cross-Dressers in Cyber-Space: Exploring the Internet as a Tool for Expressing Gendered Identity

The authors explore the ways in which the Internet functions to communicate about cross-dressing as part of a larger cultural discourse surrounding gender. As a widely used tool to dialogue on the topic of appearance, the Internet also helps to establish and even alter gendered identities. The seamless realm of the Internet allows such identities to cross cultural boundaries instantly and without regard for real physical space. Based on 30 Websites of cross-dressers collected and analyzed, this essay examines the ways that individuals use this virtual world for purposes of cross-dressing. As a study of human behavior and dress, this research has important implications for furthering our understanding of how cyberspace operates as a newly established socio-cultural realm and participates in the current scholarly discourse on the topic of the Internet as a new vehicle for the study of dress and identity.     

From conflict to cohesion: Involving stakeholders in policy research

The transitional period in South Africa, coupled with the general societal context of uncertainly, poses several challenges to policy researchers. While policies which address the inequities of apartheid are urgently needed, the time and resources available for policy formulation are limited. These policies often have to accommodate the views of a range of stakeholders who, at best, have had little prior contact with one another or, at worst, are openly hostile. This article describes our experience as health policy researchers in employing research techniques to partially address these problems. The article makes use of examples from several large studies which were conducted over the past 5 years. All of the studies evaluated primary health care services in disadvantaged communities and were unusual in the extent to which they involved community representatives and health authorities at local, regional and national levels in the formulation of recommendations. The first section of the article describes the process we follow in achieving participation, the second highlights the advantages of this approach and the last section describes the difficulties associated with the approach. We conclude by emphasizing the facilitatory role which may be played by independent researchers in times of transition.     

Kitsch taste and the consumption of Jackie 'O'

In 1996, Sotheby's in New York held a four‐day auction of many of the possessions Jackie Onassis purchased during her lifetime. This paper is an ethnography of a loose social circle of gay men, some of whom attended the pre‐auction display of these objects and who regularly hold their own informal Jackie ‘O’ celebrations. It looks at what their worshipping of a female figure, Jackie ‘O’, means and how a distinctive cultural capital is espoused by gay men which differentiates them from other Jackie collectors. To this end, the paper also focuses on ‘vocabularies of appreciation’ ( Armstrong, 2001 ), or kitsch consumption among this loose social circle and, in this process, categories of ‘us’ and ‘them’ are performed (see Bourdieu, 1984 ; Miller, 1987 ; Pierce, 1994 ).     

Professional Advocacy as a Force for Resistance in Child Welfare

Correspondence to Jane Dalrymple, University of the West of England, Glenside Campus, Blackberry Hill, Stapleton, Bristol BS16 1DD, UK Summary The development of child and youth advocacy is a relativelyrecent phenomenon, increasingly recognized by both practitionersand politicians as a way of establishing communication spacesfor young people who are looked after in state care. Literatureto date has focused on the development and underpinning principlesof child and youth advocacy, which is a necessary starting pointfor establishing good practice. However, while policy and legislationpromote the view that young people are actively involved indecision making, their advocates can be placed in a passiveposition, effectively denying young people a position as socialactors. This paper argues that the problemitizing of independentadvocacy as unprofessional can serve to further marginalizeyoung people and render advocates impotent. It suggests thatwhile it is structurally necessary for adults to take on theadvocacy role, this must be undertaken in a way that activelyresists the oppression of young people. Through considerationof accounts of advocacy activity, by way of illustration, thepaper takes the debate beyond the principles of participation,empowerment and rights to a consideration of strategies thattake into account the complexities of advocacy practice in childwelfare.     

Family carers' views of services for people with learning disabilities from Black and minority ethnic groups: a qualitative study of 30 families in a south London borough

In 2001, the UK Government identified the widespread neglect of the needs of people with learning disabilities from Black and minority ethnic communities. In this qualitative study informal interviews were held with 30 family carers of adults with learning disabilities from Black and minority ethnic communities. Their views were sought regarding services received and services needed, and cultural or communication barriers faced in accessing appropriate services. The study showed that although carers were largely satisfied with services actually received, service provision was highly inadequate and ineffective. Even very elderly and ill carers and those caring for people with severe disabilities received little support. Social worker support was negligible, and future planning rare. It is clear that the needs of carers from Black and minority ethnic communities are not being met. The situation would be considerably eased by adequate social worker support. Stereotypes of supportive family networks, (especially regarding south Asian families) proved to be unfounded.     

Children Photographing Well‐being: Facilitating Participation in Research

Children aged 8–12 years took 723 photographs representing well‐being. Another group of children categorised the photographs, identified what was missing and discussed their inter‐relationships. The largest categories were ‘people I love the most (friends)’ (23.2%), ‘activities’ (18%), ‘food and drink’ (17.2%) and ‘animals/pets’ (12.8%). Children reported that the categories were all related and could be subsumed into the general category ‘the way I live’, reflecting their holistic integrationist perspective on well‐being which in turn mirrors the whole child perspective of the Irish National Children's Strategy. The usefulness and limitations of this approach to working with children are discussed. Copyright © 2005 National Children's Bureau.     

Family matters: a discussion of the Bangladeshi and Pakistani extended family and community in supporting the children's education

This paper looks beyond an individualised type of parental involvement and discusses the role of the extended family in relation to school. We draw on the different social capital theories to explain its implications and also to discuss its efficacy. Our focus is on the Bangladeshi community and the Pakistani community in two towns in the North East of England. British South Asian parents are variously accused of having too high educational expectations of their children or not being interested at all and that Pakistani and Bangladeshi parents in particular have no or limited relationships with their children's schools. In this paper we demonstrate that parental involvement in these two communities resides not simply in the hands of the parents but within the wider family. We challenge the deficit model of British South Asian families as indifferent to the education of their children and we identify the potential resource of the extended family.