On July 4th 2025, Sama Resource Group for Women and Health is organising a National Roundtable on ‘Amplifying Psychosocial Health and Disability Justice in the Realm of Sickle Cell Disease (SCD)’ in Delhi. This roundtable is part of the on-going work on locating Sickle Cell Disease within a reproductive and disability justice framework. The one-day roundtable aims to bring together findings from the field, experiences and insights from healthcare providers, counselling experts, disability justice advocates, academics, feminists, and people living with SCD, to collectively deliberate and develop concrete suggestions and recommendations on the issue.
Our work is focused on understanding the social contexts and gendered experiences related to the disease and its treatment, in order to evaluate the efficacy and ethical implications of screening-based interventions. There is a pressing need to highlight the stigma and social ostracism faced by young women who carry the gene, further disempowering individuals within a patriarchal society where arranged marriages within caste-based communities are the norm.
Additionally, this work emphasizes the inclusion of sickle cell disease (SCD) within India’s disability rights framework. In 2016, SCD and other blood disorders were recognized for the first time under the Rights of Persons with Disabilities (RPwD) Act, marking a significant shift.
Given these multiple aspects of our focus, this roundtable will cover the following topics, interspersed with the sharing of experiences and community voices, as well as policy-level recommendations. The panel discussions will include: (a) psychosocial health insights from community experiences; (b) the framing of disability justice through reflections and reiterations; (c) an examination of the gaps alongside interventions within health systems; and (d) concluding discussions that deliberate on recommendations for SCD and gender policy considerations.