Session 11a: Metaphors
and Constructions of the Body
Chair: Emma Sayers
Understanding the positive experience: Research with People Living
with HIV/AIDS
Marian Pitts and Jeffrey Grierson
Australian Research Centre in Sex, Health and Society, La Trobe University,
Melbourne, Victoria, Australia.
The Australian research response to HIV/AIDS has an
international reputation as one of the most successful and influential.
This paper presents an overview of social research focused on people living
with HIV/AIDS (PLWHA) and discusses the processes and structures that
have enhanced the likelihood that the research has meaning for PLWHA,
community service providers and clinicians.
We will present evidence from the three HIV Futures studies carried out
in Australia (1997: N=925, 1999: N=924, 2001: N=894) and a parallel study
in New Zealand (2001: N=226). These have provided reliable and detailed
analyses of a number of domains of living with HIV, including:
- health status and maintenance
- emotional well-being
- socio-economic situation
- social and community involvement
- socio-cultural dimensions of HIV such as discrimination.
By consideration of these domains we will offer some insights into the
changed understandings of what it means to be HIV positive - as a member
of a perceived community, as an activist, as a gay man and / or as someone
who is living with a chronic condition. Issues of identity will be considered
along with explorations of the experience of a suggested sense of loss
of community or communality. It has been widely discussed that the availability
of effective antiretroviral treatment has changed the expectations of
surviving and living with HIV in subtle as well as the more obvious ways.
For example, we will question the extent to which ‘the epidemic’
has previously provided a cohesive framework for the gay community.
Exploring Constructions of The Body, (Ill)health and Identity in
Schools: The Case of Anorexia Nervosa
Emma Rich
School of Sport and Exercise Sciences, Loughborough University, Loughborough,
Leicestershire, United Kingdom
Anorexia nervosa, like all other eating disorders, is an extremely complex condition variously understood and much debated across many disciplines. However, ‘anorectic’ behaviours and experiences have tended to be viewed both in the popular media and much of the mainstream academic press as pathological conditions distinctly different from ‘normal’ and ‘healthy’ experiences and practices of non-anorexic women and girls (Malson, 1988). As such, they become separated from their social context and from the everyday experiences of ‘ordinary’ women and girls. Some efforts are made to address this imbalance through this paper, which draws on the narratives of a number of young women involved in an ongoing qualitative research study set in a leading centre in the UK for the treatment of eating disorders.
This paper explores how and through which discourses the desire to be thin is variously understood within schools, presenting insights into the ways in which the body, ill(health) and identity are currently being constructed in educational contexts. The narratives of the young women point towards the potentially damaging effects of a contemporary health discourse which constructs the relationship between exercise, weight and health as an individual responsibility and created conditions which contributed towards the development of eating disorders. Within this discourse a ‘restitution narrative’ (Frank 1995) is much easier to engage with than others and is seen as the preferred illness story in western cultures (Weingarten 2001), wherein the individual tells the story from the perspective of the diagnosis and treatment: all that has been done, is being done and will be done if treatment fails. It is shown that few people in schools knew how to respond when faced with the ‘chaotic’, ‘regressive’ and ‘rebellious’ narratives of these ‘anorectic’ girls. Hence, as the participants describe, there is a lack of relatedness between the stories they wish to convey about their illness and the discourses of others around them used to understand them. We therefore see what Weingarten (2001) describes as ‘micro-processes of withdrawal’ from others around them as they fail to follow the prescribed restitution narrative or refuse to package their illness narratives in an appropriate form. As a result they are found deficient and may be marginalized along with attention to their illness.
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Paper - 
Metaphors of Autism, and Autism as Metaphor: An Exploration of Representation
Mitzi Waltz
School of Arts Design Media & Culture, University of Sunderland, Sunderland,
United Kingdom
The neurological condition known as autism has been described
via metaphor throughout its history, even after medical research offered
more prosaic descriptors. Children with autism have been described as
alternately “in search of self” or feral, as “asleep”
or “hidden.”
Bruno Bettelheim’s image of the child with autism as an “empty
fortress” had a particularly powerful pull for many years—and
also encapsulated within it the errors at the root of his work. One can
argue that the metaphors of autism have often said more about the use
of autism as a leitmotif in psychological and social theory than they
have about the condition itself.
This paper will examine both scholarly and popular representations of
autism, with particular attention to the “hidden child” and
“puzzle” metaphors so frequently employed. It will also examine
the complex effects of these representations on the course of research
and treatment over the past six decades.
“Hidden child” and “puzzle” metaphors locate the
issue of autistic behaviours outside the affected child, and challenge
parents and practitioners to seek a key. They also encourage a view of
autism as a mystery, not answerable to structured observation or intervention,
and without relationship to other neurological conditions. They buttress
the pervasive myth that inside the child with autism there is a “normal”
child struggling to get out: a comforting thought, perhaps, but not one
that dovetails with the lived or observed experience of autism.
During the past decade, adults with autistic spectrum disorders have provided
their own narratives. These self-representations have sometimes also been
couched in metaphor, but the differences between those metaphors arising
from lived experience and those emanating from assumptions are often remarkable.
These lived experiences of autism challenge the current medical model
of the condition, and encourage examination of assumptions about normality,
impairment, and difference.