Communicating personal amnesty : a dismodernist approach to arts intersections between disability, personal stories and well-being

This thesis investigates the role of narrative devices in the process of improving an individual’s psychological and physiological experience of health and well-being using two methods of inquiry: a theoretical research project and a comparative analysis of two case studies. Through these two approaches the research examines how the health status of people experiencing disability can be re-positioned and re-designed to develop creative, narrative-based approaches to strengthen communication between the mainstream community and those marginalised by pathological, social and biological illness-centric policy. The theoretical section of the thesis examines two different, but complementary bodies of research: health and well-being, and narrative reconstruction. By invoking Antonovksy’s (1985a) theory of salutogenesis and Davis’s (2002) theory of dismodernism, the study examines the role of language and narrative in the defining of health in social, pathological and ableist spheres. The research positions health and well-being as disparate from historical and contemporary readings of illness and disability and presents literature to support the potential to improve health well-being through a creative re-narration of the experience of disability. The research examines the theoretical concepts of resilience, autonomy and social inclusion through a detailed examination of narratology and the amnesty narrative. The study links these theoretical approaches to a practical Arts-Health intersection program developed for the research project called Communicating Personal Amnesty. Through a comparative analysis of a Pilot Study and Major Case study, the research presents findings derived from theory-building participatory action research showing the efficacy of the program. The research provides a detailed analysis of key narrative structures through a variety of experimental methodological approaches to encourage an important dialogue between the creative components of the thesis and the more traditional health-based academic critique. The research is an example of emergent translational health methodologies, in disability studies.

Theatre, networked performance, and notions of ‘democratised’ spectatorship

The potential to cultivate new relationships with spectators has long been cited as a primary motivator for those using digital technologies to construct networked or telematics performances or para-performance encounters in which performers and spectators come together in virtual – or at least virtually augmented – spaces and places. Today, with Web 2.0 technologies such as social media platforms becoming increasingly ubiquitous, and increasingly easy to use, more and more theatre makers are developing digitally mediated relationships with spectators. Sometimes for the purpose of an aesthetic encounter, sometimes for critical encounter, or sometimes as part of an audience politicisation, development or engagement agenda. Sometimes because this is genuinely an interest, and sometimes because spectators or funding bodies expect at least some engagement via Facebook, Twitter or Instagram. In this paper, I examine peculiarities and paradoxes emerging in some of these efforts to engage spectators via networked performance or para-performance encounters. I use examples ranging from theatre, to performance art, to political activism – from ‘cyberformaces’ on Helen Varley Jamieson’s Upstage Avatar Performance Platform, to Wafaa Bilal’s Domestic Tension installation where spectators around the world could use a webcam in a chat room to target him with paintballs while he was in residence in a living room set up in a gallery for a week, as a comment on use of drone technology in war, to Liz Crow’s Bedding Out where she invited people to physically and virtually join her in her bedroom to discuss the impact of an anti-disabled austerity politics emerging in her country, to Dislife’s use of holograms of disabled people popping up in disabled parking spaces when able bodied drivers attempted to pull into them, amongst others. I note the frequency with which these performance practices deploy discourses of democratisation, participation, power and agency to argue that these technologies assist in positioning spectators as co-creators actively engaged in the evolution of a performance (and, in politicised pieces that point to racism, sexism, or ableism, pushing spectators to reflect on their agency in that dramatic or daily-cum-dramatic performance of prejudice). I investigate how a range of issues – from the scenographic challenges in deploying networked technologies for both participant and bystander audiences others have already noted, to the siloisation of aesthetic, critical and audience activation activities on networked technologies, to conventionalised dramaturgies of response informed by power, politics and impression management that play out in online as much as offline performances, to the high personal, social and professional stakes involved in participating in a form where spectators responses are almost always documented, recorded and re-represented to secondary and tertiary sets of spectators via the circulation into new networks social media platforms so readily facilitate – complicate discourses of democratic co-creativity associated with networked performance and para-performance activities.

Learning and teaching about disability

This thesis examined in-service education as a context for teachers and students to recognise and challenge ableism. It identified conditions that either promote consciousness of discrimination or maintain ableist beliefs and practices. The studies expose the role of ableism in constructing inequality, and highlight the change process individuals can experience.

Theorizing normalization as hidden privilege

This chapter provides a theoretical overview of some of the ways in which the process of normalization functions as forms of hidden privilege. It outlines how privileged groups come to represent the dominant norm whereby white, male, able-bodied, heterosexual, middle-class people in Western societies come to embody what it means to be normal. It also explores strategies for challenging the normalization of privilege by encouraging the development of responsibility not only for individual actions but also for the social practices which create them.

Chronic illness in non-heterosexual contexts: an online survey of experiences

In this article we contribute to the expansion of lesbian, gay, bisexual, transgender and queer (LGBTQ) health psychology beyond the confines of sexual health by examining the experiences of lesbian, gay and bisexual people living with non-HIV related chronic illness. Using a (predominantly) qualitative online survey, the perspectives of 190 LGB people with 52 different chronic illnesses from eight countries were collected. The five most commonly reported physical conditions were arthritis, hypertension, diabetes, asthma and chronic fatigue syndrome. Our analysis focuses on four themes within participants’ written comments: (1) ableism within LGBT communities; (2) isolation from LGBT communities and other LGB people living with chronic illness; (3)heteronormativity within sources of information and support and; (4) homophobia from healthcare professionals. We conclude by suggesting that LGBTQ psychology could usefully draw on critical health psychology principles and frameworks to explore non-heterosexual’s lived experiences of chronic illness, and also that there remains a need for specifically targeted support groups and services for LGB people with chronic illnesses.