Narrative of Feminist Resistance: Exploring Regulations of Leprosy in Postcolonial India

Abstract

Colonial policies on leprosy were predicated on the enactment of laws and the administration of systems that targeted ‘vagrancy' as disease control, subsuming classist, casteist, gendered and racial narratives within state response to the disease. Colonial state power, juxtaposed with the social capital of the Indian elite and ‘employed' middle classes, created exclusive spaces for containment of (hyper visible, and therefore most vulnerable) leprosy sufferers belonging to ‘lower-caste,' poor communities. Colonial regimes of disease control built on underlying notions of ‘morality' and ‘hygiene’ subsist, in one form or another, in the post-colonial state, furthered by neoliberal institutions that repurpose these notions through their development policies. Leprosy regulation narratives are still predicated on rationales relating to hygiene and economic development, which focus on caste, gender and hygiene markers for regulation.

Resistance, in the background of colonial conceptions, policies and legislations relating to leprosy, has manifested within the very structures that have been set up to forcibly confine and isolate poor and marginalised persons with leprosy. In this article, we examine spaces of power created by the colonial state, giving rise to community spaces, unique power negotiations and narratives of resistance of the most marginalised. We critically trace the resistance of the ‘leper’ against draconian legislations, as well as ostracisation in the colonial and postcolonial period. Leprosy colonies have become sites of resistance where persons affected with leprosy did not passively suffer, but could reclaim their agency and re-imagine identities more positive than those ascribed to the infection. The alternative kinship structures that develop in these colonies facilitate unique care models that challenge dominant notions of families, hitherto predicated on marriage, adoption, or relatedness. Thus, we argue that leprosy colonies can be thought of not only as places of healing but as healing in and of themselves.

Notes

1 Arshie Qureshi, ‘In Srinagar's Last Leprosy Colony, They Found Love, Grew Families, But Now Look For A Way Out’ Outlook (online) 28 February 2017 <https://www.outlookindia.com/website/story/in-srinagars-last-leprosy-colony-they-found-love-grew-families-but-now-look-for-/298089>

2 Mark Dolson, ‘De Profundis: Unmasking the Clinical Pathological and Sociocultural Aspects of Leprosy’ (2011) 8(1) Totem: The University of Western Ontario Journal of Anthropology 34.

3 Jane Buckingham, Leprosy in Colonial South India: Medicine and Confinement (Palgrave 2002) 7.

4 Warwick Anderson, ‘Leprosy and Citizenship’ (1998) 6(3) Positions 707.

5 Dolson above note 2 at 34.

6 Pankaj Sinha v. Union of India, AIR 2018 SC 4297.

7 James Staples, ‘Communities of the Afflicted: Constituting Leprosy through Place in South India’ (2014) 33(1) Medical Anthropology: Cross-Cultural Studies in Health and Illness 6.

8 As above at 16.

9 Andrew Jefferson, Simon Turner and Steffen Jensen, ‘Introduction: On Stuckness and Sites of Confinement’ (2019) 84(1) Ethnos 1.

10 Staples above note 7 at 10.

11 Saidiya Hartman, Wayward Lives, Beautiful Experiments (W.W. Norton and Company 2019).

12 As above.

13 Elina Ikävalko and Johanna Kantola, ‘Feminist Resistance and Resistance to Feminism in Gender Equality Planning in Finland’ (2017) 24(3) European Journal of Women's Studies 233.

14 See Thomas Lawrence and Sally Maitlis, ‘Care And Possibility: Enacting an Ethic of Care through Narrative Practice’ (2012) 37(4) Academy of Management Review 641; Selma Sevenhuijsen, Citizenship and the Ethics of Care (Routledge 1998).

15 Layla Branicki, 'COVID-19, Ethics of Care and Feminist Crisis Management' 27(5) Feminist Frontiers (2020) 872.

16 Mona Lilja and Evelina Johansson, ‘Feminism as Power and Resistance: An Inquiry into Different Forms of Swedish Feminist Resistance and Anti-Genderist Reactions’ (2018) 6(4) Social Inclusion 82.

17 Staples above note 7.

18 Obijiofor Aginam, ‘Between Isolationism and Mutual Vulnerability: A South-North Perspective on Global Governance of Epidemics in an Age of Globalization’ (2004) 77(2) Temple Law Review 297.

19 Michael Worboys, ‘The Colonial World as Mission and Mandate: Leprosy and Empire, 1900–1940’ (2001) 15 Osiris 207.

20 Nandini Bhattacharya, Contagion and Enclaves: Tropical Medicine in Colonial India (Liverpool University Press 2012) 3.

21 David Arnold, Colonizing the Body: State Medicine and Epidemic Disease in Nineteenth-century India (University of California Press 1993).

22 John Manton, ‘Leprosy in Eastern Nigeria and the Social History of Colonial Skin’ (2011) 82 Leprosy Review 124.

23 Renisa Mawani, ‘“The Island of the Unclean”: Race, Colonialism and “Chinese Leprosy” in British Columbia, 1891–1924’ (2003) Law, Social Justice & Global Development Journal 1.

24 Robyn Curtis, ‘Diseases of Containment: Leprosy, Syphilis, Law and the Construction of the Diseased Body in Colonial South India, 1860–1900’ (2010) MA thesis submitted to University of Canterbury, 96.

25 As above at 4.

26 Maneesha Lal, ‘The Ignorance of Women Is the House of Illness: Gender, Nationalism and Health Reform in Colonial North India, in Bridie Andrews and Mary Sutphen (eds) Medicine and Colonial Identity (Routledge 2003).

27 Nihira Ram, ‘Sex Work Under the Colonial Raj: Calcutta’, Akademi Mag (online) 17 September 2020 <https://www.akademimag.com/sex-work-calcutta>

28 Philippa Levine, ‘Rereading the 1890s: Venereal Disease as “Constitutional Crisis”’, 55(3) The Journal of Asian Studies 585.

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30 David Pivar, ‘The Military, Prostitution, and Colonial Peoples: India and the Philippines, 1885–1917’ (1981) 17(3) The Journal of Sex Research 256.

31 Hijra is a socio-cultural identity in India outside the heteronormative gender binary.

32 Jessica Hinchy, ‘Obscenity and Contagion: Policing Hijra Bodies in Public Space’ in ‘Power, Perversion and Panic: Eunuchs, Colonialism and Modernity in North India’ (2013) <https://openresearch-repository.anu.edu.au/handle/1885/156178>.

33 ‘Eunuch’ is a derogatory, colonial term used for hijras. See Gee Imaan Semmalar, ‘Unpacking Solidarities of the Oppressed: Notes on Trans Struggles in India’ (2014) 42(3–4) Women's Studies Quarterly 286; Dipika Jain, ‘Shifting Subjects of State Legibility: Gender Minorities and the Law in India’ (2017) 32(1) Berkeley Journal of Gender, Law and Justice 39.

34 Hinchy above note 31.

35 As above.

36 Dolson above note 2.

37 Disease: Leprosy (online) <https://digital.nls.uk/indiapapers/leprosy.html>

38 Buckingham above note 3.

39 As above.

40 As above.

41 As above.

42 As above.

43 Jesse Jacob and Carlos Franco-Peredes, ‘The Stigmatization of Leprosy in India and Its Impact on Future Approaches to Elimination and Control’ (2008) 2(1) PLOS Neglected Tropical Diseases 1.

44 Buckingham above note 3.

45 Buckingham above note 3.

46 As above.

47 Curtis above note 27 at 34.

48 As above.

49 As above at 35.

50 Buckingham above note 3.

51 As above.

52 As above.

53 As above at 50.

54 As above at 60.

55 Buckingham above note 3 at 36.

56 Jesse Jacob and Carlos Franco-Peredes above note 45.

57 Sanjiv Kakar ‘Leprosy in British India, 1860–1940: Colonial Politics and Missionary Medicine’ (1996) 40 Medical History 215.

58 Buckingham above note 3.

59 Sanjiv Kakar, ‘Medical Developments and Patient Unrest in the Leprosy Asylum, 1860 to 1940’ (1996) 24(4/6) Social Scientist 62.

60 As above.

61 As above at 33.

62 As above.

63 As above at 71.

64 As above at 71.

65 As above at 75.

66 As above at 76.

67 Michel Foucault, Madness and Civilization: A History of Insanity in the Age of Reason (1961), transl. Richard Howard (Vintage Books, 1965) 3.

68 Buckingham above note 3 at 6.

69 Buckingham above note 3 at 41.

70 Staples above note 7.

71 Heide Poestges, ‘Leprosy, the Key to Another Kingdom’ (2011) 82(2) Leprosy Review 155.

72 Nivedita Mishra, ‘Leprosy in India: The Remarkable Life of Dr Isaac Santra’, Hindustan Times (online) 24 January 2015 <https://www.hindustantimes.com/india/leprosy-in-india-the-remarkable-life-of-dr-isaac-santra/story-QpOk7Wa7m5ajTg3LSljuFL.html>

73 The Continuing Impact of Isolation: A Story from Orissa, India (online) 23 July 2022 <https://leprosyhistory.org/impact/isolation>

74 Amy Fairchild, ‘Leprosy, Domesticity, and Patient Protest: The Social Context of a Patients’ Rights Movement in Mid-Century America’ (2006) 39(4) Journal of Social History 1011 at 1019.

75 Lauren Quimby, ‘Rising from the Ashes: Hansen's Disease, Carville, and Patient Identity in 20th Century America’ (2014) 4 Thesis (online) 23 July 2022 <https://openworks.wooster.edu/independentstudy/5968/>, 4.

76 Celeste L. Arrington, ‘Leprosy, Legal Mobilization, and the Public Sphere in Japan and South Korea’ (2014) 48(3) Law and Society Review 563.

77 Anne Deepak, ‘Globalization, Power and Resistance: Postcolonial and Transnational Feminist Perspectives for Social Work Practice’ (2011) 55(6) International Social Work 779 at 783.

78 K.M. Tanaka, ‘Contested Histories and Happiness: Leprosy Literature in Japan’ (2013) 5(1) Health, Culture and Society 99 at 101.

79 International Leprosy Association, The Continuing Impact of Isolation: A Story from Orissa, India. <https://leprosyhistory.org/impact/isolation>.

80 Express News Service, ‘After Strike, Leprosy Patients Agree to Shift to SSG Hospital’ The Indian Express (online) 9 June 2009 <https://indianexpress.com/article/cities/ahmedabad/after-strike-leprosy-patients-agree-to-shift-to-ssg-hospital/>; Staff Reporter, ‘Patients at Leprosy Hospital Stage Protest’ The Hindu (online) 16 June 2013 <https://www.thehindu.com/news/cities/kozhikode/patients-at-leprosy-hospital-stage-protest/article4819919.ece>

81 K.V. Desikan, ‘Elimination of Leprosy & Possibility of Eradication—The Indian Scenario’ (2012) 135(1) Indian Journal of Medical Research 3.

82 Staples above note 7 at 75.

83 Leprosy Mission Trust of India, Dimple Kapadia: The Bollywood Actress Who Has Overcome Leprosy (online) <https://www.leprosymission.in/dimple-kapadia-the-bollywood-actress-who-has-overcome-leprosy/>.

84 As above.

85 Staples above note 7 at 75.

86 Desikan above note 99.

87 Law Commission Report (2015), ‘Eliminating Discrimination Against Persons Affected by Leprosy’.

88 Pranav Parashar, ‘World Leprosy Day: What the Indian Government Is Doing to Achieve Its Goal of a Leprosy-Free India’ YourStory (online) 30 January 2019 <https://yourstory.com/2019/01/government-leprosy-free-india>

89 Sajitha Venkatesan and Pugazhenthan Thangaraju, ‘Government of India Initiative against Leprosy—We Should Be Aware’ (2019) 8(9) Journal of Family Medicine and Primary Care 3072.

90 Rupesh Dutta, ‘World Leprosy Day: India's Efforts to Trace Leprosy Cases Still Not Sufficient, Says WHO Goodwill Ambassador’ Outlook (online) 30 January 2020 <https://www.outlookindia.com/newsscroll/world-leprosy-day-indias-efforts-to-trace-leprosy-cases-still-not-sufficient-says-who-goodwill-ambassador/1721490>. ASHA workers are women healthcare workers in India. There is one ASHA for every 1000 people in a village, and these workers are meant to act as an “interface between the community and the public health system”. Their primary task is to counsel women on safe institutional deliveries, pre and postnatal care, and good health practices among other things. Despite being hailed as the backbone of the healthcare system, ASHAs are expected to serve as volunteers and are not salaried public employees; they are paid on an incentive-based system. For the last few years, ASHA workers have been protesting across India demanding regular pay, health insurance, and other social security benefits.

91 Staples above note 7 at 108.

92 Hannah Mudge, ‘Friendship, Community and Peace: A Visit to Purulia Leprosy Community’ (online) <https://www.leprosymission.org.uk/latest-news/friendship-community-and-peace-visit-purulia-leprosy-community/#/>

93 Tanupriya, ‘Redefined Families and Subsystems: Reading Kinship and Hierarchical Structures in Select Hijra Autobiographies’ (2020) 12(5) Rupkatha Journal on Interdisciplinary Studies in Humanities 1.

94 See Dipika Jain and Kavya Kartik, ‘Unjust Citizenship: The Law That Isn't’ (2020) 13(2) NUJS Law Review; Arijeet Ghosh and Diksha Sanyal, ‘How Can Families Be Imagined Beyond Kinship and Marriage? (2019) 54(45) Economic and Political Weekly.

95 Tanupriya above note 95 at 3.

96 Judith Halberstam, The Queer Art of Failure (Duke University Press 2011).

97 Semmalar above note 32 at 287.

98 Sel Hwahng et al., ‘Alternative Kinship Structures, Resilience and Social Support among Immigrant Trans Latinas in the USA’ (2019) 21(1) Culture, Health & Sexuality 1.

99 As above.

100 Jane E. Cross, Nan Palmer and Charlene L. Smith, ‘Families Redefined: Kinship Groups that Deserve Benefits’ (2009) 78 Mississippi Law Journal 791 at 793.

101 Jérôme Courduriès and Cathy Herbrand, ‘Gender, Kinship and Assisted Reproductive Technologies: Future Directions after 30 Years of Research’ (2014) 21 Enfances Familles Générations xviii at xxv.

102 Joan Anim-Addo, ‘Activist-Mothers Maybe, Sisters Surely? Black British Feminism, Absence and Transformation’ (2014) 108 Feminist Review 44.

103 Kanika Batra, Feminist Visions and Queer Futures in Postcolonial Drama: Community, Kinship, and Citizenship (Routledge 2011) 4.

104 Banhishikha Ghosh, ‘The Institution of Motherhood Among the Hijras of Burdwan’ in Samita Manna and Soumyajit Patra (eds) Motherhood—Demystification and Denouement (Levant Books 2016).

105 Ghosh above note 96.

106 James Staples, Leprosy and a Life in South India: Journeys with a Tamil Brahmin (Lexington 2014).

107 As above.

108 Staples above note 7.

109 As above at 16.

110 Carol Gilligan, In a Different Voice: Psychological Theory and Women's Development (Harvard University Press 1993) 62; Branicki above note 15 at 872.

111 Sevenhuijsen as above note 14 at 183.

112 Uday Chandra, ‘Rethinking Subaltern Resistance’ (2015) 45 Journal of Contemporary Asia 566; Dipika Jain and Kavya Kartik, ‘Unjust Citizenship: The Law That Isn't’ (2020) 13(2) NUJS Law Review 563 at 566.

113 Chandra above note 111 at 569; Jain and Kartik above note.

114 Renu Adlakha, ‘Kinship Destabilized! Disability and the Micropolitics of Care in Urban India’ (2020) 61 Current Anthropology 46.

115 Amy Morrison, ‘A Woman with Leprosy Is in Double Jeopardy’ (2000) 71 Leprosy Review 128.

116 As above at 130.

117 Parisa Patel, Mahua Das and Utpal Das, ‘The Perceptions, Health-Seeking Behaviours and Access of Scheduled Caste Women to Maternal Health Services in Bihar, India’ (2018) 26 Reproductive Health Matters 114 at 115.

118 Gabrielle Levesque, ‘Care, Gender Inequality and Resistance: A Foucauldian Reading of Carol Gilligan's Ethic Of Care’ (2013) Thesis <https://open.library.ubc.ca/cIRcle/collections/ubctheses/24/items/1.0074112>, 1.

119 See Partha Chatterjee, The Nation and Its Fragments (Princeton University Press 1993); Chandra Talpade Mohanty, ‘Under Western Eyes: Feminist Scholarship and Colonial Discourses’ (1984) 12 Boundary 2; Gayatri Spivak, ‘Can the Subaltern Speak?’, in Ashcroft, Griffins and Tiffin (eds) The Postcolonial Studies Reader (Routledge 1995).

120 Anne Castaing, ‘Thinking the Difference: On Feminism and Postcolony’ (2019) South Asia Multidisciplinary Academic Journal 1 at 2.

121 Mohanty above note 119 at 336.

122 Ratna Kapur, Erotic Justice: Law and the New Politics of Postcolonialism (Glass House Press 2013).

123 David Arnold, ‘Leprosy: From “Imperial Danger” to Postcolonial History—An Afterword’ (2017) 52(3) The Journal of Pacific History 407 at 415.

124 Jane Buckingham, ‘Indenture and the Indian Experience of Leprosy on Makogai Island, Fiji’ (2017) 52(3) The Journal of Pacific History 325 at 332.

125 Lilja and Johansson above note 20 at 91.

126 Newsclick Team, ‘Lockdown 4.0: No Policies for Colonies of Leprosy Patients’ Newsclick (online) 20 May 2020 <https://www.newsclick.in/lockdown-40-no-policies-colonies-leprosy-patients>.

127 Shinjini Das, ‘India's Initial Coronavirus Response Carries Echoes of the Colonial Era’ The Conversation (online) 29 April 2020 <https://theconversation.com/indias-initial-coronavirus-response-carried-echoes-of-the-colonial-era-135887> (last accessed 4 May 2021).

128 As above.

129 Rebecca Kay, ‘She's Like a Daughter to Me’: Insights into Care, Work and Kinship from Rural Russia’ (2013) 65(6) Europe-Asia Studies 1136.

130 As above.