1. Aims:
This research examines people’s experience of Asbestos Related Diseases (ARD). It explores how people feel after contracting ARD and how this affects them personally. The research contrasts these personal experiences to scientific and legal understandings of ARD. It examines the ways in which ARD sufferers agree – or disagree – with these medical and legal definitions of what causes the disease, of how it might be treated, of who should be compensated etc. The aim is to understand how people interpret their experiences, what values they draw upon to do so and how illness shapes their identities.
2. Objectives:
This research explores how asbestos pollution and disease, and the accompanying medical and legal debates, have influenced men’s and women’s identities. It examines the relationship between personal and collective identities through residents’ experience of illness, aiming to generate greater understanding of cultural values and the gendered nature of identity in relation to medical science. The research therefore asked:
§ Do men and women respond differently to the knowledge that they have ARD? Does the relationship between work, industry and disease have a gendered dimension?
§ How do men and women adjust their personal sense of identity to deal with crises in relation to their sense of self?
§ To what extent do people identify with the medical and legal definitions of ARD and to what extent do they see these as contradicting their own experience of illness?
§ To what extent have people’s differential experiences of ARD in South Africa and in the UK shaped their respective collective identities? Furthermore, how do men and women maintain kinship relationships and ensure cultural reproduction when suffering from ARD?
3. Main research results:
This research shows extensive and striking similarities between the experiences of South African and UK ARD sufferers. Both sets of workers have a deep suspicion of the medical and legal establishment while the experience of the disease has meant that the health, dignity and livelihoods of workers have been eroded. ARD sufferers in both South Africa and the UK challenge the scientific and legal assessments of pleural plaques (scarring on the lung lining) as benign and inert. All participants spoke extensively about unexplained chest pains and breathing difficulties, despite doctors’ reassurance that pleural plaques were not physically debilitating, and argued that all forms of ARD are progressive.
The UK research shows how medical definitions of disease are reinforced through a legal process of seeking compensation that makes it difficult for men to claim some money – while still alive – and to maintain their identity and role as men, laggers (thermal insulation engineers) and family providers. The diagnosis of disease signals the end of men’s working lives, and as this is accompanied by a failure to support their families financially, it leads to a corrosion of masculinity and social withdrawal. These men therefore want to receive compensation in terms of a full and final payment and to find a new livelihood as fast as possible. The legal campaign for compensation is, ironically, a means to reassert their masculinity, and is also a fight for recognition of their experiences as members of an old working class. Women are, however, more affected by notions of guilt and compensation does not offer them the promise of an alternative lifestyle.
In South Africa, men’s gendered experiences are more complex but similarly ambivalent. Here men are often in an ambiguous position in terms of their identity. Their Griqua ethnic heritage marks women out as the ‘true’ carriers of identity and situates men as ‘incomers’ to a collective identity. Their pride and prestige came, initially, from work on the asbestos mines and is now related to the financial boost irregular compensation provides. Most of the time, however, men are unemployed and destitute. Women, however, did not relate compensation to pride and status. They focused instead on the experiences of living on the mines and on the extended family relationships this made possible. Their identity was not located in the hard, dangerous work of miners nor was it centred around the ability to bring in money and provide for a family; instead it was about being part of an extended family, about maintaining the links through which family life takes place and in facilitating women’s ritual and ethnic role as Griqua.
Overall, the research suggests that science-policy approaches, which emphasise questions such as severity of disease and medical notions of causality need to appreciate the dynamics of identity, gender and socio-cultural context or they risk undermining people’s experience of ARD and compensating for bodily deterioration rather than recognising the accompanying social withdrawal and deterioration that many people experience.
4. Significant academic achievements:
Given the high quality of the research results, I intend to submit the Working Paper entitled ‘I’ve got the dust as well’: Asbestos Disease, Litigation and Laggers to the internationally recognised journal, American Ethnologist.
5. Dissemination activities:
Dissemination activities in South Africa and in the UK have been substantial and have included academic presentations and publications, community meetings, community radio programmes, summary briefs to Members of Parliament, newspaper articles, webpage coverage and internet linkages to research (see section 2A below).
6. Impacts on policy and practice:
Influencing policy and practices in medical research and environmental policy is a long-term process, especially where discourses focus on extreme cases which require sophisticated medical, legal and environmental responses.
In the UK, the Dagenham Branch of Britain’s General Union (GMB) circulated 108 copies of the research findings to Members of Parliament registered as GMB members. Research results were also presented in support of the laggers’ lobby at the start of the House of Lords Court of Appeal Hearing on pleural plaque. In South Africa, research findings were disseminated to NGOs and residents through community workshops and to government officials through a media debate in which they participated.
Other opportunities for influencing policy and practice will emerge as the study findings continue to be published and disseminated, feeding into a wider public debate.