Abstract
Although haemophiliacs in Aotearoa New Zealand comprise a contemporary ‘community’ of merely some 600, this study offers many insights into the types of social linkages within these communities and their embedding in society – arguably a ‘strategic research site’. While relevant overseas studies are referred to, the authors of Haemophilia in Aotearoa NZ make no formal comparisons but soundly provide a platform for such comparisons.
Haemophilia is a rare, genetically inherited blood-clotting disease, which varies in its effects across a range from mild to severe for some. As the subtitle points out, it is merely a ‘bleeding nuisance’ for some and for others much more life-altering. Treatments – affected by developing medical science and technology – have changed over the various decades. Given the limited stock of expertise and resources, those with the condition are motivated to form social linkages with other sufferers and carers, and to support interest group activities to represent them to the authorities and to advocate for their collective interest. Beyond the immediacies of treatments, haemophilia gives rise to personal issues, such as whether to give birth, to what extent scarce resources should be drawn on and the roles of various actors in living with the condition.
The study reported on in this book has been carried over several decades by a more or less consistent team. It involved an initial sweep circa 1994 of the day-to-day and lifelong experiences of haemophiliacs in NZ, including questionnaires with some 200 respondents, together with another 80 participating in interview follow-ups, also supplemented through collective observations and a report-back workshop involving some 30 participants. In 1999 there was an update with phone interviews (n = 30), and in 2005/6, 37 were interviewed. Some participated several times in the data-collection. In addition, the team offered advocacy advice when appropriate. Financial sponsors include the Health Research Council and the University of Auckland Faculty/department funds, supplemented by some fellowships and sheer on-the-job academic research work. Although there is a broad continuity over time, the focus of the study has changed – from a broad concern to collect basic information to exploring the effect of the Hepatitis C problem and, more recently, to document how the government has responded.
The conceptualisation draws on a broad cultural and political economy approach examining ‘Local biologies’ in terms of varieties, different meanings and embeddings, while both imagined and actual aspects of communities are considered.
The book was co-produced by a team of two academics and two community members, based on a similar platform of research participation, while held together over its duration by Professor Park from the University of Auckland’s Department of Anthropology. It has been in the interests of the haemophiliac community to support the research as social organisation is a necessary part of coping.
The book is organised into seven chapters, including an introduction setting the scene and a conclusion drawing out the lessons of the study for future research and programme development. The second chapter provides a descriptive account of the experiences of haemophilia and its varieties. The experiences of having or supporting haemophilia are lifelong and differ along several dimensions. Diagnosis can be problematic as symptoms overlap with child abuse, and treatment opportunities are much affected by the spatial arrangements of district health organisations, aggravated by high costs. Parents and other family members usually become expert caregivers. The next chapter locates haemophilia within the gender order. Men are ‘privileged’ in haemophilia discourse as they are the more usual patients (but also genetic carriers), whereas women sufferers have more difficulty being heard. For both genders, but more particularly men, their condition makes engagement in some activities such as playing injury-prone contact sports difficult, even dangerous. In turn, given the (admittedly problematised) cultural importance of these sports – playing rugby for boys, for example – these limitations can be harrowing for identities. Chapter 4 provides an historical account, necessarily considerably built around the development of various technologies of care and the changing networks surrounding these. Whereas older sufferers were greatly affected, some younger people with haemophilia can live well-normalised lives. Changing political ideologies, particularly the advent of neoliberalism, have shaped state responses.
Chapter 5 deals with the exigencies created by the incursion of HIV and Hepatitis C into their community. The need for transfusions can lead to risk from blood-borne viruses, somewhat overcome through the introduction of non-blood vehicles. The penultimate chapter deals with voluntary association activity – asserting rights, inclusion and equity through joint action. The Haemophiliac Foundation of NZ (HFNZ) developed from a small support group and negotiated issues arising from the Hep C issue, going on to help form the government National Haemophiliac Service in 2005–6. Its active mobilisation of concern provides intellectual and moral leadership.
A more formal treatment of social structures might have been a useful addition to this study. For example, further detail on what the pattern is of the various linkages and how these are renewed and change as membership changes over time. It would also have been beneficial perhaps to explore the recruitment and social maintenance mechanisms, and the paths through which interactions among participants is translated into more formal and higher-scale voluntary organisational activities. While the book sketches these, more could have been brought out. Nonetheless, such a carefully grounded longitudinal study, which pays such precise attention to the embedding of the community in wider society is a methodological model for many social research studies. The vivid and careful writing, often enhanced by personal touches, makes for a great reading experience.