SEXUALITY AND DISABILITY in the Indian Context Working Paper | TARSHI 2018 TARSHI TARSHI believes that all people have the right to sexual wellbeing and to a self-affirming and enjoyable sexuality. This includes people with disabilities. People with disabilities should not be discriminated against or denied services or information. Copyright TARSHI 2018 SEXUALITY AND DISABILITY in the Indian Context Working Paper | TARSHI 2018 SOME ABBREVIATIONS | 4 EXECUTIVE SUMMARY | 5 INTRODUCTION | 7 UNDERSTANDING SEXUALITY | 12 Sexuality in India | 12 Defining Sexuality | 13 Defining Sexual and Reproductive Health and Rights (SRHR) | 13 UNDERSTANDING DISABILITY | 17 Models of Disability | 17 Defining Disability | 23 People with Disabilities in India | 27 Some Numbers | 33 PERSPECTIVES ON DISABILITY AND SEXUALITY | 41 Does Sexuality Matter? | 41 Are the Issues the Same for Everyone? | 53 THE POLICY CONTEXT | 63 International Documents on Disability and Rights | 65 Indian Laws and Policies related to Disability | 75 GROUND REALITIES | 98 SEXUALITY, SEXUAL HEALTH AND RIGHTS | 102 False Assumptions about Disability and Sexuality | 102 Sexuality and Disability in the media | 108 Body Image and Self Worth | 113 Relationships | 118 Marriage | 123 Gender | 127 Sexuality Education | 129 Sexual Practice | 136 Abuse | 142 HIV and AIDS | 149 REPRODUCTIVE HEALTH AND RIGHTS | 156 Menstruation | 156 Contraception | 159 Pregnancy | 162 Abortion | 166 Hysterectomy | 172 Adoption | 175 SOME POINTERS TO THE WAY AHEAD | 178 Skills and Training | 178 Accessible Information and Services | 186 Social Spaces | 189 Research | 195 Advocacy | 199 Disability Studies | 203 CONCLUSION | 206 APPENDICES | 212 ACKNOWLEDGMENTS | 222 SOME ABBREVIATIONS ARTs Assisted Reproductive Technologies CARA Central Adoption Resource Authority CESCR Committee on Economic, Social and Cultural Rights DAISY Digital Accessible Information System DSM Diagnostic and Statistical Manual of Mental Disorders ESCAP UN Economic and Social Commission for Asia and the Pacific FST Foundation for Social Transformation enabling North East India IFFPwD First International Film Festival for Persons with Disabilities NCPEDP National Centre for Promotion of Employment for Disabled People NFDC National Films Development Corporation NIRRH National Institute for Research in Reproductive Health NPRD National Platform for the Rights of the Disabled POCSO Protection of Children from Sexual Offences Act, 2012 PwDA Persons with Disabilities Act 1995 RPD/RPwD Rights of Persons with Disabilities Act, 2016. SIDE South India Disability Evidence [study] SRH Sexual and Reproductive Health SRHR Sexual and Reproductive Health and Rights TISS Tata Institute of Social Sciences UNCRPD United Nations Convention on the Rights of Persons with Disabilities UNFPA United Nations Population Fund UNHCR United Nations High Commissioner for Refugees WHO World Health Organisation WID World Institute on Disability EXECUTIVE SUMMARY This Working Paper is based on the original Sexuality and Disability in the Indian Context (2010), which presented the observations, experiences, resources and information sourced from self-advocates, field professionals, and individuals with disabilities and their families. It has been updated to reflect recent changes in law and policy as well as narratives of change shared with us by various sources, some of whom include those who contributed to the 2010 working paper. During the process of updating this paper we found information on a number of new initiatives, and reviewed many reports and documents that emerged through our desk research, as well as those suggested to us by peers and associates. However, this updated working paper does not incorporate references to all work, research or programmes on sexuality and disability in India. Even as we continued to revisit and revise this paper, there was a sense that more new information and materials exist or are in process, of varying scale and impact. Therefore, this working paper may be read as part of larger, sectoral work-in-progress. We hope it will add value to existing knowledge communication and we request readers to tell us more about materials and initiatives known to them, to add to the growing resource bank in the sector. Earlier, in 2010, the general approach and prevailing societal attitudes around sexuality and disability mostly pointed to a lack of connection between the two terrains. The reality, however, as many people felt then, and as more people have expressed over the intervening years, is that people with disabilities are also sexual beings with sexual fantasies, feelings and aspirations like anyone else. They are often unable to express their sexuality fully, not 6 executive summary so much because of a disability, but because of the restriction of their mobility, negative societal attitudes and a continuing lack of personal support as also lack of educational, entertainment, social and health services and rights that are available to other people. The limited conversations on sexuality of people with disabilities have often been held only either from a healthcare perspective or when addressing instances and cases of abuse. Even now, at first glance, the situation poses enormous challenges, especially when one thinks of the sheer numbers of people that this country holds and the depressing lack of resources to address everyone’s needs. While there is still a dearth of sexual and reproductive health services for people with disabilities, there is also an encouraging rise in the awareness that people with disabilities have sexual and reproductive rights, and there are examples of what is being done to affirm these rights. As this paper illustrates, in the last several years there have been more attempts to communicate, and to create offerings, across fields, that foster a greater understanding and acceptance of inclusion. Existing services can be tweaked with very little extra expenditure – much can be done with a little. This paper also offers some ideas for the way ahead. We hope that it will be a useful document for people with disabilities, activists, care providers, health professionals, academicians, researchers, and policy makers to take forward the work of affirming the sexual and reproductive rights of people with disabilities. INTRODUCTION Sexuality and Disability in the Indian Context 2018 revisits the scenario in India vis-a-vis sexuality and disability. It builds on the working paper of the same name that we published in 2010 and incorporates additional information and resources based on interviews with people with disabilities and with parents, teachers, other care providers, field professionals, activists and self-advocates. It also draws upon secondary research to examine existing laws and policies relevant to sexuality and disability in India. This paper lays out some of the key concerns that have emerged in the course of our work. We hope that it will be a useful document for people with disabilities, activists, care providers, health professionals, academicians, researchers, and policy makers. There is today an increasingly visible and active engagement with disability and sexuality in India. This engagement has been spear- headed by different individuals and groups, including disability rights activists, sexual and reproductive rights activists, care providers of people with disabilities and professionals working in the field of disability. Given that work on sexuality itself is fraught with challenges, addressing the sexuality concerns of people with disabilities is no easy undertaking, and it is thanks to all these people that there is a promising debate on these issues. There is now a widening cross-section of people working to include issues of disability and inclusion in mainstream conversation 1 Persons With Disabilities and pursuits. In 2012, the TV show Satyamev Jayate created by Watch Full Episode. (n.d.). Retrieved from http://www. celebrity actor Aamir Khan, aired an episode on Persons with satyamevjayate.in/watch- Disabilities which left a strong impact on audiences.1 In 2015, the the-episodes/persons-with- First International Film Festival for Persons with Disabilities disabilities/watch-full-episode- hindi.aspx (IFFPwD) was held in Delhi, an initiative of the Department of 8 introduction Empowerment of Persons with Disabilities, Ministry of Social 2 NATIONAL FILM DEVELOPMENT CORPORATION Justice & Empowerment, Government of India, in association with LIMITED (NFDC). International the National Films Development Corporation (NFDC).2 Media focus Film Festival for Persons with on this festival helped to publicise it in mainstream media, as well Disabilities. 2015. Retrieved from https://www.nfdcindia.com/ 3 4 5 as catalyse discussion around it across other media platforms. , , IFFPWD/index.html Media people engage in more aware reporting today, sensitive to the 3 IANS. (2015.December 25). approach taken by mainstream players to disability related issues.6 ‘Film fest for disabled people gets signature movie’. Indian Yet there remains a dismal lack of support on most fronts for persons Express. Retrieved from http:// with disabilities. For example, the Rio Paralympics 2016 received no indianexpress.com/article/ entertainment/entertainment- media coverage in India until activists took up the issue after which others/film-fest-for-disabled- there was some amount of media time given to these games on a people-gets-signature-movie/ daily basis on two channels. 4 BOSE, A. (2015, November 30) IFFPD Signature