Hostname: page-component-848d4c4894-8bljj Total loading time: 0 Render date: 2024-06-28T03:06:24.511Z Has data issue: false hasContentIssue false
  • English
  • Français

SEXUAL AND REPRODUCTIVE HEALTH CONCERNS OF PERSONS WITH DISABILITY IN INDIA: AN ISSUE OF DEEP-ROOTED SILENCE

Published online by Cambridge University Press:  18 May 2018

Seema Sharma  and
Muthusamy Sivakami
Seema Sharma*
Affiliation:
School of Health Systems Studies, Tata Institute of Social Sciences, Mumbai, India
Muthusamy Sivakami
Affiliation:
School of Health Systems Studies, Tata Institute of Social Sciences, Mumbai, India
*
1Corresponding author. Email: seema.sharma2014@tiss.edu
Get access Rights & Permissions [Opens in a new window]

Summary

Global estimates suggest that over a billion people live with a disability that is significant enough to affect their daily lives. According to the 2011 Indian Census, India alone has about 26.8 million people with disabilities. Research suggests that persons with disabilities (PwDs) in India are among the most neglected, stigmatized, poor and least educated of the world’s population, and women with disabilities in India are the most marginalized, both socially and economically. They bear the triple burden of being discriminated against through being ‘women’ (socially marginal beings), ‘disabled’ (incapacitated, inefficient and undesirable) and ‘women with disabilities’ (the weakest of the weak), often becoming socially invisible. Although there has been a general recognition over the years that the educational and employment opportunities of PwDs in India need to be improved, their sexual needs and aspirations, sexuality concerns and sexual and reproductive health and rights have been largely ignored. The objective of this paper is to highlight the paucity of research on the sexual and reproductive health concerns of PwDs, particularly women, in the Indian context using existing literature on India, and to identify the possible reasons of this neglect. The study describes the obstacles faced by PwDs, particularly women, to acquiring good sexual and reproductive information and services, based on the results of empirical studies. Given the lack of research on this in India, the evidence largely comes from studies conducted elsewhere in the world. Lack of information and education about sexual health concerns, physical and/or infrastructural inaccessibility, judgemental provider attitudes, limited provider knowledge about disability issues and individual factors, including inhibitions about seeking health care and financial barriers, are identified as factors inhibiting the sexual and reproductive rights of people with disabilities in India.

Type
Research Article
Information
Journal of Biosocial Science , Volume 51 , Issue 2 , March 2019 , pp. 225 - 243
Copyright
Copyright © Cambridge University Press, 2018 

Access options

Get access to the full version of this content by using one of the access options below. (Log in options will check for institutional or personal access. Content may require purchase if you do not have access.)

References

Addlakha, R. (2007) How young people with disabilities conceptualise the body, sex and marriage in urban India: four case studies. Sexuality and Disability 25(3), 111–123.Google Scholar
Ahumuza, S. E., Matovu, J. K., Ddamulira, J. B. & Muhanguzi, F. K. (2014) Challenges in accessing sexual and reproductive health services by people with physical disabilities in Kampala, Uganda. Reproductive Health 11(1), 1–9.Google Scholar
Altuntug, K., Ege, E., Akın, B., Kal, H. E. & Sallı, A. (2014) An investigation of sexual/reproductive health issues in women with a physical disability. Sexuality and Disability 32(2), 221–229.Google Scholar
Anderson, P. & Kitchin, R. (2000) Disability, space and sexuality: access to family planning services. Social Science & Medicine 51(8), 1163–1173.Google Scholar
Barua, A. & Kurz, K. (2001) Reproductive health-seeking by married adolescent girls in Maharashtra, India. Reproductive Health Matters 9(17), 53–62.Google Scholar
Basson, R. (1998) Sexual health of women with disabilities. Journal of the Canadian Medical Association 159(4), 359–362.Google Scholar
Becker, H., Stuifbergen, A. & Tinkle, M. (1997) Reproductive health care experiences of women with physical disabilities: a qualitative study. Archives of Physical Medicine and Rehabilitation 78(12), S26–S33.Google Scholar
Bhatia, J. & Cleland, J. (1996) Obsteric morbidity in South India: results from a community survey. Social Science & Medicine 43(10), 1507–1516.Google Scholar
Cheausuwantavee, T. (2002) Sexual problems and attitudes toward the sexuality of persons with and without disabilities in Thailand. Sexuality and Disability 20(2), 125–134.Google Scholar
Decker, M. R., Seage, G. R., Hemenway, D., Raj, A., Saggurti, N., Balaiah, D. et al. (2009) Intimate partner violence functions as both a risk marker and risk factor for women’s HIV infection: findings from Indian husband–wife dyads. Journal of Acquired Immune Deficiency Syndromes 51(5), 593–600.Google Scholar
Frohmader, C. & Ortoleva, S. (2013) The sexual and reproductive rights of women and girls with disabilities. In ICPD International Conference on Population and Development Beyond 2014, pp. 1–18.Google Scholar
Ghai, A. (2002) Disabled women: an excluded agenda of Indian feminism. Hypatia 17(3), 49–66.Google Scholar
Ghosh, N. (2016) Impaired Bodies, Gendered Lives: Everyday Realities of Disabled Women. Primus Books, Delhi.Google Scholar
Ghosh, R. (2001) Intention not to use contraception: a comparative study of northern and southern states of India. Demography India 30(2), 261–280.Google Scholar
Government of India (2011) Disability in India – A Statistical Profile. Ministry of Statistics and Programme Implementation, Government of India, New Delhi.Google Scholar
Groce, N. E. (2005) HIV/AIDS and individuals with disability. Health and Human Rights 8(2), 215–224.Google Scholar
Groce, N. E., Yousafzai, A. K., Dlamini, P., Zalud, S. & Wirz, S. (2006a) HIV/AIDS and disability: a pilot survey of HIV/AIDS knowledge among a deaf population in Swaziland. International Journal of Rehabilitation Research 29(4), 319–324.Google Scholar
Groce, N. E., Yousafzai, A. K. & Maas, F.V.D. (2006b) HIV/AIDS and disability: differences in HIV/AIDS knowledge between deaf and hearing people in Nigeria. Disability and Rehabilitation 29(5), 367–371.Google Scholar
Habib, L. A. (1995) Women and disability don’t mix!’ Double discrimination and disabled women’s rights. Gender and Development 3(2), 49–53.Google Scholar
Hall, M. A., Stephenson, R. B. & Juvekar, S. (2008) Social and logistical barriers to the use of reversible contraception among women in a rural Indian village. Journal of Health Population and Nutrition 26(2), 241–250.Google Scholar
Hardee, K., Agarwal, K., Luke, N., Wilson, E., Pendzich, M., Farrell, M. et al. (1999) Reproductive health policies and programs in eight countries: progress since Cairo. International Family Planning Perspectives 25(Supplement), S2–S9.Google Scholar
Hindin, M. J. & Fatusi, A. O. (2009) Adolescent sexual and reproductive health in developing countries: an overview of trends and interventions. International Perspectives on Sexual and Reproductive Health 35(2), 58–62.Google Scholar
International Institute for Population Sciences (IIPS) & Macro International (2007) National Family Health Survey (NFHS-3), 2005–06: India Volume II IIPS, Mumbai.Google Scholar
Jejeebhoy, S. J. (2007) Sexual and reproductive health among youth in Bihar and Jharkhand: an overview. Economic and Political Weekly 42(48), 34–39.Google Scholar
Jejeebhoy, S. J., Kalyanwala, S., Zavier, A. F., Kumar, R. & Jha, N. (2010) Experience seeking abortion among unmarried young women in Bihar and Jharkhand, India: delays and disadvantages. Reproductive Health Matters 18(35), 163–174.Google Scholar
Kalyanwala, S., Zavier, A. J., Jejeebhoy, S. & Kumar, R. (2010) Abortion experiences of unmarried young women in India: evidence from a facility-based study in Bihar and Jharkhand. International Perspectives on Sexual and Reproductive Health 36(2), 62–71.Google Scholar
Khalid, Y. & Aras, R. Y. (2012) Domestic violence and its influence on reproductive and sexual health. Journal of Family Welfare 58(2), 51–55.Google Scholar
Kulkarni, P. M. (2009) Shaping India’s Population Policy and Programme: Internal Factors and External Influences. Gokhale Institute of Politics and Economics, Pune.Google Scholar
Limaye, S. (2003) Sexuality and women with sensory disabilities. In Hans, A. & Patri, A. (eds) Women, Disability and Identity. Sage Publications, New Delhi, pp. 89–100.Google Scholar
Lipson, J. G. & Rogers, J. G. (2000) Pregnancy, birth, and disability: women’s health care experiences. Health Care for Women International 21(1), 11–26.Google Scholar
Lonsdale, S. (1990) Women and Disability: The Experience of Physical Disability among Women. Macmillan Education Ltd, Houndmills, Basingstoke, Hampshire and London.Google Scholar
McCabe, M. P., Cummins, R. A. & Deeks, A. A. (2000) Sexuality and quality of life among people with physical disability. Sexuality and Disability 18(2), 115–123.Google Scholar
McManus, A. & Dhar, L. (2008) Study of knowledge, perception and attitude of adolescent girls towards STIs/HIV, safer sex and sex education: a cross sectional survey of urban adolescent school girls in South Delhi, India. BioMed Central Women’s Health 8(12), 1–6.Google Scholar
Mehrotra, N. (2006) Negotiating gender and disability in rural Haryana. Sociological Bulletin 55(3), 406–426.Google Scholar
Milligan, M. S. & Neufeldt, A. H. (2001) The myth of asexuality: a survey of social and empirical evidence. Sexuality and Disability 19(2), 91–109.Google Scholar
Mishra, A. (2008) Is Hysterectomy the Final Solution? URL: http://www.dnaindia.com/mumbai/report-is-hysterectomy-the-final-solution-1148211(accessed 29th July 2015).Google Scholar
Mohanty, S. K. (2012) Multiple deprivations and maternal care in India. International Perspectives on Sexual and Reproductive Health 38(1), 6–14.Google Scholar
Mohapatra, S. & Mohanthy, M. (2004) Abuse and Activity Limitation: A Study on Domestic Violence Against Disabled Women in Orrisa, India. Swabhiman, Orrisa.Google Scholar
Moll, K. (2007) Too Few to Worry About? Or Too Many to Ignore? The Exclusion of People with Disabilities from HIV Programmes in India. PMO-DFID, New Delhi.Google Scholar
Murthy, G. V., John, N. & Sagar, J. (2014) Reproductive health of women with and without disabilities in South India, the SIDE study (South India Disability Evidence) study: a case control study. BMC Women’s Health 14(146), 1–7.Google Scholar
Nisha (2006) InfoChange Agenda: Regulation of Disabled Women’s Sexuality.URL: URL:http://infochangeindia.org: http://infochangeindia.org/agenda/claiming-sexual-rights-in-india/regulation-of-disabled-womens-sexuality.html (accessed 15th December 2014).Google Scholar
Nosek, M. A., Howland, C., Rintala, D. H., Young, M. E. & Chanpong, G. F. (2001) National study of women with physical disabilities: final report. Sexuality and Disability 19(1), 5–39.Google Scholar
Oladunni, T. M. (2012) Sexual behavior and practices among adolescents with disabilities in Southwest Nigeria. Sexuality and Disability 30(3), 289–299.Google Scholar
Piotrowski, K. & Snell, L. (2007) Health needs of women with disabilities across the lifespan. Journal of Obstetric, Gynecologic& Neonatal Nursing 36(1), 79–87.Google Scholar
Prakash, R., Singh, A., Pathak, P. K. & Parasuraman, S. (2011) Early marriage, poor reproductive health status of mother and child well-being in India. Journal of Family Planning and Reproductive Health Care 37(3), 136–145.Google Scholar
Prasad, J. H., Abraham, S., Kurz, K. M., George, V., Lalitha, M. K., John, R. et al. (2005) Reproductive tract infections among young married women in Tamil Nadu, India. International Family Planning Perspectives 31(2), 73–82.Google Scholar
Quint, E. H. (2003) Gynecological care for teenagers with disabilities. Journal of Pediatric and Adolescent Gynecology 16(2), 115–117.Google Scholar
Ravindran, T. K. (1993) Users perspective on fertility regulation method. Economic and Political Weekly 28(46/47), 2508–2512.Google Scholar
Ravindran, T. K. & Balasubramanian, P. (2004) “Yes” to abortion but “No” to sexual rights: the paradoxical reality of married women in rural Tamil Nadu, India. Reproductive Health Matters 12(23), 88–99.Google Scholar
Registrar General of India (2011) Census of India: Data on Disability Tables C20, C21, C29. URL: http://www.censusindia.gov.in/2011census/population_enumeration.html (accessed 24th November 2016).Google Scholar
Sabarwal, S. & Santhya, K. G. (2012) Treatment-seeking for symptoms of reproductive tract infections among young women in India. International Perspectives on Sexual and Reproductive Health 38(2), 90–98.Google Scholar
Santhya, K. G. (2004) Contraceptive use dynamics. In Jejeebhoy, S. J. (ed.) Looking Back Looking Forward: A Profile of Sexual and Reproductive Health in India. Population Council, New Delhi, pp. 25–43.Google Scholar
Santhya, K. G. & Jejeebhoy, S. J. (2007) Early marriage and HIV/AIDS: risk factors among young women in India. Economic and Political Weekly 42(14), 1291–1297.Google Scholar
Santhya, K. G. & Jejeebhoy, S. J. (2003) Sexual and reproductive health needs of married adolescent girls. Economic and Political Weekly 38(41), 4370–4377.Google Scholar
Santhya, K. G. & Verma, S. (2004) Induced abortion. In Jejeebhoy, S. J. (ed.) Looking Back Looking Forward: A Profile of Sexual and Reproductive Health in India. Population Council, New Delhi, pp. 88–104.Google Scholar
Shah, P., Norlin, C., Logsdon, V. & Samson-Fang, L. (2005) Gynecological care for adolescents with disability: physician comfort, perceived barriers, and potential solutions. Journal of Pediatric and Adolescent Gynecology 18(2), 101–104.Google Scholar
Sharma, R., Singh, A., Suri, V. & Kaur, S. (2015) Barriers faced by women with disabilities in access to sexual and reproductive healthcare: experiences from North India. International Journal of Preventive, Curative & Community Medicine 1(4), 69–73.Google Scholar
Srinivasan, K. (2006) Population policies and family planning programmes in India: a review and recommendations. IIPS Newsletter. 6–44.Google Scholar
Stephenson, R., Koenig, M. A. & Ahmed, S. (2006) Domestic violence and contraceptive adoption in Uttar Pradesh, India. Studies in Family Planning 37(2), 75–86.Google Scholar
Stephenson, R., Koenig, M., Acharya, R. & Roy, T. (2008) Domestic violence, contraceptive use, and unwanted pregnancy in rural India. Studies in Family Planning 39(3), 177–186.Google Scholar
TARSHI (2010) Sexuality and Disability in the Indian Context. Talking about Reproductive and Sexual Health Issues (TARSHI), New Delhi.Google Scholar
Tepper, M. S. (2000) Sexuality and disability: the missing discourse of pleasure. Sexuality and Disability 18(4), 283–290.Google Scholar
UNFPA (2013) A Deeper Silence: The Unheard Experiences of Women With Disabilities and their Sexual and Reproductive Health Experiences: Kiribati, the Solomon Islands and Tonga. UNFPA, Suva, Fiji.Google Scholar
Varkey, P., Balakrishna, P. P., Prasad, J. H., Abraham, S. & Joseph, A. (2000) The reality of unsafe abortion in a rural community in South India. Reproductive Health Matters 8(16), 83–91.Google Scholar
Vaughn, M., Silver, K., Murphy, S., Ashbaugh, R. & Hoffman, A. (2015) Women with disabilities discuss sexuality in San Francisco focus groups. Sexuality and Disability 33(1), 19–46.Google Scholar
Verma, R. K., Rangaiyan, G., Singh, R., Sharma, S. & Pelto, P. J. (2001) A study of male sexual health problems in a Mumbai slum population. Culture, Health & Sexuality 3(3), 339–352.Google Scholar
Visaria, L., Ramachandran, V., Ganatra, B. & Kalyanwala, S. (2004) Abortion in India: emerging issues from qualitative studies. Economic and Political Weekly 39(46/47), 5044–5052.Google Scholar
Wellings, K., Collumbien, M., Slaymaker, E., Singh, S., Hodges, Z., Patel, D. et al. (2006) Sexual behaviour in context: a global perspective. The Lancet 368(9548), 1706–1728.Google Scholar
WHO & UNFPA (2009) Promoting Sexual and Reproductive Health for Persons with Disabilities. WHO/UNFP: A Guidance Note. WHO, Geneva.Google Scholar
WHO & World Bank (2011) World Report on Disability. WHO, Geneva.Google Scholar
WHO (2006) Defining Sexual Health: Report of a Technical Consultation on Sexual Health, 28–31st January 2002. WHO, Geneva.Google Scholar
Wong, A. (2000) The work of disabled women seeking reproductive health care. Sexuality and Disability 18(4), 301–306.Google Scholar
World Bank (2009) People with Disabilities in India: From Commitments to Outcomes. The World Bank, Human Development Unit, South Asia Region, New Delhi.Google Scholar