Disability Studies in India: The Legacy of Anita Ghai by Prof Shubhangi Vaidya

To cite this work: Vaidya, Shubhangi (2025). Disability Studies in India: The Legacy of Anita Ghai. In Goodley, D., Halsey, R., Scully, J., Singh, S., Titchkosky, T. and Wong, M.E. (Editors). The Disability Matters Scholarship Collection. Sheffield: University of Sheffield. 

Prof. Shubhangi Vaidya is with the School of Interdisciplinary and Trans-disciplinary Studies at the Indira Gandhi National Open University. A sociologist by training, she has research interests in the areas of disability, gender and the family, with a special focus on neurodiversity. She is the author of ' Autism and the Family in Urban India: Looking Back, Looking Forward' ( Springer, 2016) and ' Embodying Motherhood: Perspectives from Contemporary India' co-authored with Anu Aneja ( Sage-Yoda, 2016). She is also engaged in awareness raising and advocacy for persons with disability and their families.

Disability Studies has developed as vibrant site of interdisciplinary engagement in India over the past couple of decades. An exciting body of scholarship has emerged across the social sciences and humanities; law and public policy; architecture and design; development studies and gender studies; interrogating ableist and discriminatory structures, systems and mindsets and advocating for inclusion and social justice. This scholarship is attentive to the intersections of disability with gender, caste, class and other axes of exclusion and inclusion; cultural representations and framing of ‘difference’; and the complex, multi-layered history of the sub-continent.  It situates local realities against global discourses, complicating the notion of individual rights and entitlements in a collectivist culture that valorizes family, kinship and communitarian ties. Disability is undoubtedly an issue of development, and needs to be studied in relation to structural issues like poverty, inequality, patriarchy, environmental and climate justice. With a population of over 1.4 billion; immense cultural, religious, linguistic and other diversities; and the historical baggage of  two centuries of colonial rule, India is a complex and fascinating site for critical disability studies. It is in this context that Professor Anita Ghai’s pioneering contributions in theorizing disability with a post-colonial lens assume significance. Her nuanced reading of  representations of disability in religious literature and mythology, for instance unpacks the cultural understandings of disability as karmic consequence and familial responsibility. 

Anita sought to open up conversations between the disability and women’s movements around issues like access, sexuality, motherhood, care giving, pre-natal testing, abortion, reproductive rights. Complicating feminist discourse, she spoke of the existential realities of women with disability in India and their erasure from rights movements (Ghai 2002, 2003). Her attempts to make space for disability in the Indian Association for Women’s Studies (IAWS) was a step in this direction.  Disability Studies in India has strong critical, feminist foundations, as is seen in the work of Asha Hans, Renu Addlakha, Nilika Mehrotra, Nandini Ghosh, Upali Chakravarti and many others.  

Anita’s autobiographical writing has a special resonance.  Her reflections on growing up as a disabled girl and woman in a North Indian family  is an apt example of the feminist dictum ‘the personal is the political’ (Ghai, 2015).  Polio in childhood left her with a permanent disability, which her family tried very hard  to ‘cure’ through various kinds local ‘remedies’, faith healers and miracle cures. When they eventually came to terms with her disability, they focused their attention on her education and career.  She writes of the dawning realisation that she would not have access to normative adult feminine roles of wifehood and motherhood. “Slowly but surely culture stamped me with the identity of being a disabled person. Like all families, mine, too, was a product of a given culture. My parents clearly understood that in a patriarchal milieu where arranged marriages are the rule, non-availability of the  traditional role would be extremely difficult. I now understand that what the family sanctioned was worked out as a strategy. It became clear to me that the idea of a liberated family was illusory” (ibid. p. 8). She writes with  candour about her psychological struggles with her ‘disabled’ identity; her initial refusal of assistive devices; the attempts to “overcome” and negotiate normative ideas of beauty and desirability. Her account of her experiences of heart disease and cancer starkly illustrate the existential frailty of the body and the intersections of disability, illness and debility which have become even more salient in the aftermath of the COVID 19 Pandemic. She examines this further in an autoethnographic reflection on her experiences during the national lockdown and contracting the virus during the terrible days of the ‘second wave’ in  April 2021  (Ghai and Tenneti, 2024).   Deploying Bury’s  (1982) concept of ‘biographical disruption’ she expands the concept to encompass the social disaster and enhanced vulnerabilities  and precarities experienced by people with disabilities. She powerfully invokes the terror of isolation, loneliness and deprivation of the human touch during this period; experiences that mirror the existential realities of many individuals with disabilities who live on the social margins. 

Anita’s scholarship and activism influenced my engagement with disability studies as the mother of a person with autism and a feminist scholar with research interests in neurodiversity, gender and family. Her work compelled me to question my understandings of capacity, personhood and agency and look at relations of care with a more critical lens, especially with regard to persons with high support needs whose voices we make little effort to hear. 

I was also privileged to be one of the contributing authors in her edited volume  ‘Disability in South Asia: Knowledge and Experience’ (2018); an invaluable introduction to the field. In her Introduction to the book she raises the questions: “… how do we come to know disability? What are the conceptions of the normal? What is autonomy? When exactly is life not worth living? Why does rationality have to be the sole determinant of our humanity? How do we define limit” ? (ibid., xx).  These are questions that demand critical reflection and a willingness to engage with multiple voices and subjectivities. Her own chapter “Unification of Disability in Diversity: A Different Voice” critically interrogates the ‘feel good’ concept of disability as ‘diversity’ and cautions that diversity may not always result in full inclusion, particularly of individuals with profound cognitive impairments whose personhood may not be acknowledged. The diversity paradigm thus runs the risk of de-politicising disability and glossing over the systemic oppressions experienced by persons with disability.  She writes: “To me, diversity works as a manoeuvre in neoliberal political and economic markets that work to ratify the status quo through ‘feel good’ politics” (ibid., 428)  It is in this context that she  also interrogates the term ‘divyang’ which has now been incorporated into the disability terminology of the state.

Anita’s sudden departure is a massive rupture which will take us all a long time to recover from. The core concerns that engaged her throughout her life centred around the value of human life, the indispensability of human connection and the need to build solidarities. As her friend Rachna Johri aptly said, Anita wanted a life of both joy and justice. There can be no better epitaph.

References

Bury, M. (1982) “Chronic illness as biographical disruption”. Sociology of Health and Illness, 4(2), 167–182.

Ghai, A. (2002) “Disabled Women: An Excluded Agenda of Indian Feminism”. Hypatia 17(3): 49-66.

-- (2003) (Dis)Embodied Forms: Issues of Disabled Women. New Delhi: Har-Anand Publications

-- (2015) Rethinking Disability in India  Routledge, India

-- (2018) Disability in South Asia: Knowledge and Experience. New Delhi: Sage.

Ghai, A. and Tenneti, S. (2024) “An Autoethnographic Reflection of COVID-19 and/as Biographical Disreuption”. Indian Journal of Gender Studies, 31 (1): 43-60.  https://doi.org/10.1177/09715215231210537