July 2018 update
Dear friends of the IBD project
We are now into the second year of the project and I thought it would be nice to share some reflections from the first year of fieldwork and also tell you about our plans for the next year.
Firstly, I would like to thank and congratulate all our colleagues at ISERDD, for their excellent teamwork and support in carrying out the first two phases of demographic survey and in-depth interviews with families affected by IBDs across the three field sites (Delhi, Maharashtra and Rajasthan). They have shown remarkable skills and patience in carrying out the work both in terms of pragmatics (e.g. locating houses in villages without any postal address) and interpersonal relationships- especially in families where a particular member (not necessarily a man) might act as the guardian of knowledge and communication about a child’s illness. The team extends a warm welcome to Vaibhav Saria, who has joined ISERDD (part time) as a Research Fellow for the IBD project. Vaibhav is looking into literature around some of the contested treatment regimens for sickle cell and thalassaemia currently prescribed across India, to analyse what constitutes evidence and expert knowledge within the field of IBDs in India.
Not having worked in India since my doctoral dissertation in Kashmir (as far back as the mid-late 80s), I went back with great trepidation about the enormity and scale of structural issues characterising health, and healthcare in India. I was lucky to have been initiated into the field and politics of sickle cell in India by a great collaborator and friend, Sampat Ramteke. Sadly, his sudden death following a brief illness in November 2017 has left a gaping hole in the work being led by him as the President of the Sickle Cell Society India. Sampat had worked tirelessly for the past three decades, both with the state government and the local communities, to improve access to medical and social care for families affected by sickle cell across the Vidharba region. Our condolences to the family and the Sickle Cell Society India; and our congratulations too on the (posthumous) civil order of Padam Shri awarded to Sampat. We are also very sorry to share the sad news of the unexpected loss of one of the young and enthusiastic members on our user advisory board, Bhawna Grover. Our sincere condolences are extended to her parents, family and friends. It is difficult not to speculate about the potential neglect of warning signs during the week preceding her death and especially during her brief hospital stay, and the need for optimal medical care that might have saved her life. Yet Bhawna’s parents have had to accept their loss with such exemplary grace since, like most parents in our sample across the board, they learnt to believe that children with thalassaemia don’t live long and, hence, did not complain. We hope that in a year’s time, we will have learnt enough to challenge such assumptions and make a broader case for appropriate access to care.
On a personal note, it has been very intense and a steep learning curve for me personally in trying to understand the specificity of sickle cell and thalassaemia as embodied experiences within a particular, local therapeutic milieu, the challenges faced by families in meeting the demands of long term care and issues of access, whilst keeping an eye on the rationale for state interventions hinging on seemingly contradictory registers of prevention and cure.
We promise to bring you regular updates, sharing our field stories and research outputs.