Ruth Fitzgerald

Biological citizenship at the periphery: parenting children with genetic disorders

This paper engages critically with constructions of biological citizenship through analysis of the experiences of 10 New Zealand families with rare and currently incurable genetic disorders affiliated to the New Zealand Organisation for Rare Disorders (NZORD). While sharing elements in common with other health activist support groups (such as the forging of research collaborations between sufferers and scientists), NZORD activism is also influenced by New Zealands situation on the periphery of genetic medicine. Group members demonstrate an endorsement of a modernist heroic vision of medicine in the public sphere allied with a subversive, simultaneous downgrading of medicines status to mere technical services in the realm of the private sphere and within the medical clinic. The political goals for New Zealands biological citizens are also shown to differ depending upon the possibility of treatment for various genetic conditions. This suggests that a range of new trajectories in the experience of “bottom up” genetic health activism is emerging in New Zealand.

The New Zealand health reforms: dividing the labour of care.

This paper examines the concept of care as it was practised and conceptualised within one hospital group in southern New Zealand during the health reforms. The paper argues that these reforms brought about a division in the labour of care between the broad group of managers, computer analysts, administration officers, and the clinical staff. Aspects of these two empirically derived categories of care are elaborated, as well as the problems associated with each style. While this division in the labour of care is argued to be an unintended local consequence of the New Zealand health reforms, it also represents a more global phenomenon-the abstraction of social life.

The Conceptualisation of Residential Home Environments: Implications for Occupational Therapy

This paper examines the views of staff about the environments of two residential homes: one representative of a homely environment and the other more reminiscent of a hotel. A qualitative study using in-depth semi-structured interviews was conducted with a purposive sample of 21 staff. Emerging themes in the data from the first facility related to kinship, recognition of history, individuality and meaningful relationships in the homely environment. This contrasted with a more conscious awareness of the tone of the second facility, the need for correct behaviours and a bureaucratic organisation in the hotel-like home. The findings showed that the meanings attached to a residential home and its press for occupational behaviours are shaped by cultural, social and historical experiences. Such meanings are strongly influenced by management, with staff and residents adjusting to expectations as indicated by the social and physical environment. There is very little in the literature that reflects how one should conceptualise a residential home, yet it is the very nature of this perception that is crucial to the development of an atmosphere that indicates expectations for actions – for both staff and residents.

A qualitative and quantitative analysis of the New Zealand media portrayal of Down syndrome

BACKGROUND There are only a small number of studies that systematically explore the tensions between the global shift to universal screening and the media representations of the people with Down syndrome. This paper contributes to the literature by analyzing the New Zealand media coverage of this topic. OBJECTIVE To describe the content and quality of selected New Zealand media references to Down syndrome in light of the claim by New Zealand support group Saving Downs of state supported eugenics via universal screening. METHODS Quantitative content analysis was conducted of 140 relevant New Zealand articles (from 2001 to 2011) and qualitative critical discourse analysis of 18 relevant articles (from 2009 to 2011) selected from television, magazine and newspaper. RESULTS The content analysis showed no strong directional reporting although the quality of life for people with Down syndrome was represented as slightly negative. Most articles focused on issues of society, government and care rather than genetics. The qualitative analysis identified themes around quality of life, information and bias, preparedness, eugenics, the visualness of disability and the need for public debate around genetic screening and testing. CONCLUSION The New Zealand print media coverage of these issues has been relatively balanced. Recent mixed media coverage of the topic is critical, complex and socially inclusive of people with Down syndrome.

Forty years in Aotearoa New Zealand: white identity, home and later life in an adopted country

ABSTRACT In this article we recount some of the memories, hopes and strategies of 22 older migrants who are ageing in their adopted country of Aotearoa New Zealand. Having arrived as young adults in the 20 years after World War II, most of the immigrants have lived on ‘foreign’ soil for twice as long as their brief sojourns of childhood and early adulthood in their country of origin. Arriving from a variety of backgrounds in 12 different countries, they can all be considered ‘white’ immigrants in relation to New Zealands indigenous Māori population and other non-European immigrant groups such as those from Pacific Island Nations or Asia. Their lives encompass the experience of globalisation and transnationalism in communication technologies and inter-country migration. As they recount the meaning of living through these changes, these older folk discuss the delicacies of assimilation in post-World War II New Zealand and the interplay between the daily life of New Zealand as ‘home’ and the homeland as Heimat. Their stories argue against the assumption that decades of residence, particularly for white immigrants in a white-majority nation, imply an ‘assimilation’ of cultural identity. Instead, the stories evoke recognition of the negotiation of gain and loss which continues as they, and their contexts, change over time.

Embodying occupational overuse syndrome

This article explores the ways in which embodiedness has become problematic for New Zealand sufferers of occupational overuse syndrome (OOS). While successful rehabilitation could lead back to employment, this was based on the biographical continuity of a bodily hexus that ignored persistent pain. The reality of OOS involved a liminal fragility associated with social isolation, loss of identities, pain and functional disability that was incorporated into re-negotiated identities and biographies with the result that respondents became exquisitely self-absorbed, exercising constant bodily surveillance and discipline in order to manage their symptoms.

Connecting the East and the West, the Local and the Universal: The Methodological Elements of a Transcultural Approach to Bioethics

ABSTRACT: From the outset, cross-cultural and transglobal bioethics has constituted a potent arena for a dynamic public discourse and academic debate alike. But prominent bioethical debates on such issues as the notion of common morality and a distinctive “Asian” bioethics in contrast to a “Western” one reveal some deeply rooted and still popular but seriously problematic methodological habits in approaching cultural differences, most notably, radically dichotomizing the East and the West, the local and the universal. In this paper, a “transcultural” approach to bioethics and cultural studies is proposed. It takes seriously the challenges offered by social sciences, anthropology in particular, towards the development of new methodologies for comparative and global bioethics. The key methodological elements of “transculturalism” include acknowledging the great internal plurality within every culture; highlighting the complexity of cultural differences; upholding the primacy of morality; incorporating a reflexive theory of social power; and promoting changes or progress towards shared and sometimes new moral values.

Choice, Rights, and Virtue: Prenatal Testing and Styles of Moral Reasoning in Aotearoa/New Zealand

Using a Foucauldian biopower analytic, this article combines insights from several ethnographic research projects around the moral reasoning styles underpinning debates over selective reproductive technologies in Aotearoa/New Zealand. We show that divergent or shared public, private, state, individual, and community moral reasoning styles become highly politicized truth discourses that have the potential to, and at times do, affect one another, modifying a dominant, state-supported, principal-based bioethics framework. The styles of moral reasoning that we identify pivot on an aspirational cultural ideal of the provision of choice to citizens, which is taken as an appropriate position from which to regulate selective reproductive technologies.

The Predicament of d/Deaf: Towards an Anthropology of Not-Disability

In our research with d/Deaf people in five families in the North and South Islands of New Zealand, we found that some of the challenges that we as researchers faced in our encounters with participants and within our mixed hearing and d/Deaf research group paralleled broader issues for this community. We use the details of our field research processes to explore the conundrum of d/Deafness, which may or may not be a disability, and use this exploration to reflect on approaches to d/Deafness as revealed in our research findings. We argue that d/Deafness creates a predicament, but not only for the d/Deaf. We propose that practical solutions to this predicament may be thought of as services that enable citizenship, participation, communication, and care, rather than disability services, and this rethinking would ease the cognitive and cultural dissonance experienced by perfectly able d/Deaf people who have to access disability services in their everyday life.

Parent peer advocacy, information and refusing disability discourses

Parent peer advocacy is a distinct type of empowering relationship practised in Parent to Parent New Zealand that shares experiential knowledge gained from raising a child with disability, chronic illness or special needs and draws on both partnership and participation ideals of support. This support organisation matches families with impairment, illness and genetic difference in light of issues they encounter as families with disability. In this paper we discuss disabling historical contexts countered by the provision of information as advocacy, ambivalence towards difference in the organisation, and the rise in prospective parents seeking parent peer support. These thematic areas allow us to create an analytical framework to be used in the next phase of an empirical study with Parent to Parent New Zealand.