Abstract
In this article, I analyse a narrative by Rohima1, a Bangladeshi woman now living in the UK who was diagnosed in adulthood as having NF1 (neurofibromatosis). While some themes in her narrative account resemble those of persons with NF1 in the general European and American population, other themes relate specifically to Bangladeshi cultural issues and practices. These particularly concern gender, sexual identity and marriage. As a young woman, Rohima’s dark skin coloration and the tumors or lumps associated with her condition led her parents and relatives to regard her as unmarriageable and in effect, despite her evident intelligence and competence, to deny that she was a woman. Bangladeshi men and women alike found her appearance a bar to any social acceptability. Even after her marriage (to a non-Bangladeshi man), her family have been unwilling to accept her and her children fully into their kinship network. The article explores the consequences of genetic disorders such as NF1 in cultures where social identity and concepts of personhood, particularly for women, are inextricably related to appearance and to judgements regarding marriageability.
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Notes
Before undertaking such sensitive ethnographic research, approval was sought and obtained from the UK’s Multi-Centre Research Committee, the relevant National Health Trusts, and local research committees. I also exercised the utmost care and caution in my interaction with the patients and their families, bearing in mind the need to protect the privacy and welfare of the patients above the needs of research.
For example, in my doctoral research I worked in a multi-religious community in Bangladesh. Because of my social identity as a Christian and my residence for 18 months with a Christian family, I was exposed much more to the stories and views of Christian villagers than to those of Muslims or Hindus. Again, as a woman in a largely gender segregated village society, much of my information necessarily derived from women, since it was not acceptable for me to spend any time talking to men. Naturally, I had to make allowances in my work for the source of my information and for the biases which this might introduce. Yet I was able to get a very detailed picture of the position of women in Bangladeshi society and its connections with relations between religious communities. The findings of my dissertation and the resultant book (Rozario 2001) have been largely confirmed by subsequent researchers (Gardner 1995; Blanchet 1996; Kaosar 2005; Rashid 2004; Del Franco 2006).
Rohima said, “It is also well known that thoughts can be subliminally put into my head, the evidence I have about myself is that I have an overactive imagination. On hindsight I can see that I was a difficult child and a very awkward adolescent, I have the benefit now with my own child that I know why she does some things, my mother did not have this benefit.”
Interestingly, Rohima reported that, despite her apparent slow start, she did very well at college and university levels, getting much better results than the elder sister whom she was told to emulate.
Interestingly, when I met Rohima’s sister during her recent visit to the UK. I (even with a Bangladeshi eye, attuned to minor differences in skin color) did not see much difference between the skin color of the two sisters. The main difference was in their height (Rohima is somewhat shorter than her sister) and of course Rohima’s ‘lumps and bumps.’ which her sister did not have.
Tui thik thakis, tui to abar onno rokom.
Her family would clearly have been happy for her to be married off to someone who was far from being her social equal and was far less educated than her (Rohima has a university degree in English literature, biochemistry and law).
Recently her younger brother married a non-Bangladeshi woman, and Rohima told me that although her mother disapproved of this marriage she sent a large sum of money to her brother for his wedding.
Ablon does not date this interview, but her research was done between 1987 and 1995 (Ablon 1999: 3)
Abbreviations
- NF1:
-
neurofibroatosis 1
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Acknowledgements
The research reported on here was carried out in the context of an ESRC-funded project, “Genetics, Religion and Identity: A Study of Bangladeshi Muslims in Britain,” awarded to Sophie Gilliat-Ray (principal investigator), Angus Clarke, Stephen Pattison and Joanna Latimer. I am most grateful to Rohima and her family for opening up not only their house, but their lives to me, and for taking me into their confidence. Despite all her troubles, Rohima always managed to be a cheerful host. I remain grateful for her support for my research and her encouragement to me to write up her own story. I would like to thank Clara Gaff for her helpful editorial comments, and both Clara Gaff and Angus Clarke for writing the commentary on my paper. I am also grateful to Sophie Gilliat-Ray for her constant support and to Carole McKeown, Shagufta Khan, Asfa Ahmed and Angus Clarke for their assistance. Without their help, recruitment for this project would have been almost impossible. Alison Shaw gave me moral support and shared her own experience of research in a similar field with the Pakistanis and this was especially useful with my recruitment strategy. Finally, I would like to acknowledge the encouragement, advice, and editorial assistance of my husband, Geoffrey Samuel.
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1This is a pseudonym, to maintain anonymity.
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Rozario, S. Growing Up and Living with Neurofibromatosis1 (NF1): A British Bangladeshi Case-study. J Genet Counsel 16, 551–559 (2007). https://doi.org/10.1007/s10897-007-9097-0
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DOI: https://doi.org/10.1007/s10897-007-9097-0