Farida Rizwan, a Bangalore-based blogger and the mother of Farheena, a girl with cerebral palsy was advised that Farheena undergo a hysterectomy when she began menstruating. After Mumbai-based Meenakshi Sharma’s daughter Kashish, who has an intellectual disability, started menstruating, Meenakshi was terrified each time she heard of attempts of sexual assault on girls with disabilities. Rahibai, a marginalised farmer from a resource poor area in rural Maharashtra, India, was advised her daughter, Malana, who has an intellectual disability undergo a hysterectomy. None of these mothers heeded the biased advice given by ‘well-wishers’, some of whom were doctors as well. Today, Farheena, Kashish and Malana manage their menstruation and take care of their menstrual hygiene on their own with minimal assistance, one of the main reasons for this being that they were provided with the information to do so.
These three young women, thanks to their mothers, managed to have at least some of their rights not be violated. But what vindicates the argument that women with disabilities (WWDs) should be deprived of sexual and reproductive healthcare and rights is scary. Harmful stereotypes of WWDs include the belief that they are hypersexual, incapable, irrational and lacking control[1]. These narratives are then often used to build other perceptions such as that WWDs are inherently vulnerable and should be ‘protected from sexual attack’[2]. WWDs are also often considered ‘childlike’ which again deprives them of sexuality education and information on sexual health. In addition, if a WWD gives birth to a child then her caregivers feel that the responsibility of childcare will also fall upon them. Not acknowledging and recognising the sexuality of women with disabilities has been a major reason for the stigma and discrimination they face. With ableism and patriarchy being dominant in the Global South, women with disabilities are, most of the time, infantilised, deemed asexual or hypersexual, and are denied safe and affirming spaces where they can express their sexuality. The prejudices also include eugenics-influenced thinking and the belief that sexually active WWDs with multiple partners are more likely to transmit STIs (sexually transmitted infections).
At a time when navigating conversations around sexuality is still a challenge, the discourse around the sexuality of WWDs and meeting their sexual and reproductive health and rights needs is even more stilted. When these prejudices are challenged by non-heteronormative narratives, it simply adds more layers to the marginalisation of WWDs. In countries like India where LGBTQI+ people already face a range of marginalisation because of their sexual and gender identities, being disabled compounds their marginalisation. Kiran, a disabled trans rights activist from Andhra Pradesh has faced a series of violence, stigma and discrimination because of his trans identity. Kiran had already been facing discrimination because of his disability and caste identity and not conforming to heteronormative expectations of his society brought him more challenges. Because of this marginalisation, people standing at intersections of identities (both disability and sexuality) find it difficult to engage in many spaces. Also, challenges in communication and dependence on care providers and interpreters has made it difficult to access many of their narratives and make them visible.
In India, the right to sexual pleasure and to parenthood often come only within the institution of heterosexual marriage. WWDs find getting married a difficult prospect, as they are often viewed as broken or damaged and are not considered “women enough” or for that matter “not human enough”[3]. Their bodies are not considered ‘desirable’. This limits their chances of not only experiencing pleasure but also of parenthood by choice. Rupsa Malik in her article, Women with Disabilities: Parenting and Reproduction[4] talks about how laws and policies related to disabilities also limit legal capacity, autonomy, and the choice to reproduce, especially of those with intellectual and psychosocial disabilities. Their choice and consent are often ruled out positing their disabilities as ‘excuses’. In an interview, Ratnaboli Ray, founder of Anjali, an organisation working in West Bengal on the right to mental health, rightly points out how women with psychosocial disabilities have no access to information around sexual and reproductive health in the first place. Apart from this, she also gives us a vivid picture of how mental health institutions are highly patriarchal and oppressive in nature with no sexual policies for patients and no room for sexuality education for people with psychosocial disabilities, mainly because of the stigma associated with them. They are not safe spaces where women with disabilities might be able to access sexual and reproductive health facilities; rather she talks about an incident where in a mental health institution, a WWD’s newborn baby was taken away and placed for adoption, and she was beaten by the nurses who thought she had had an ‘illicit affair’ as she had been found wandering out of her house.[5] While a lack of spaces where women with disabilities can make choices related to their sexual and reproductive health is one part, forced abortions of WWDs is also a common practice in South Asian countries[6]. With an ableist belief that WWDs cannot provide consent, they are further subjected to forced hysterectomies and sterilisation while being confined at home and institutions, limiting their interaction with people and the outside world.
The protectionist attitude towards WWDs has been seen to be present almost everywhere around the world. They are mostly guarded in rehabilitation centres or by families who do not allow them any privacy. Niluka Gunawardena, a disability rights activist from Sri Lanka, explains in one of their articles[7] how inaccessibility stands at the centre of all of these issues: lack of services for independent living, lack of access to the public sphere, and lack of access to state services such as health care, administration, banking and financial institutions, judiciary etc. Largely, the guardianship extended by institutions and families is also determined by the fear that women with disabilities will be subjected to violence and assault, which has been the case in all the three instances cited at the beginning. A ‘Count Me In’ study by CREA[8] also cites evidence of WWDs often being subjected to violence both within and outside their families, a lot of which is also sexual in nature.
Apart from the discourses on sexual violence, though sexual pleasure is largely considered irrelevant for WWDs, debates and campaigns are emerging to recognise WWDs as sexual beings with the right to pleasure, intimacy, love, relationships and sexual preferences.[9] Niluka Gunawardena talks about how conversations around WWDs should not be limited to gender-based violence and go beyond the violence framework to “develop a sex-positive rights framework”, thereby asserting “reproduction and sexuality as universal rights”. A young disability rights activist from India, Anusha Misra, says that it is necessary to break away from stereotypical media representations of ‘perfect love’ that are mostly determined by the perceptions of non-disabled and privileged individuals. These representations never include the experiences of WWDs and lead to a lot of ‘otherness’, control, and chauvinism in romantic and sexual relationships. There is a need to expand the avenues for WWDs to engage in discussions around pleasure, desire, eroticism, intimacy, relationships experienced by them all of which encompasses their sexuality and forms a prominent part of human rights but stays unexplored. Joint efforts of CREA and Point of View’s online platform Disability and Sexuality are examples of work being done towards having nuanced conversations around disability and sexuality where there are accessible information-based resources, personal narratives of WWDs, and sex-affirming artwork. Ekaete Judith Umoh, a disability rights activist from Nigeria talks about how information, and educational and communication material need to be tailored to meet the needs of women with psychosocial disabilities[10]. There is also a need for cross-movement integration and dialogue to counter the heteronormative narrative around sexuality of WWDs. Shampa Sengupta, a disability rights activist from India, also asserts how it is extremely important to also focus on people who identify as both queer and disabled and whose interests lie in both the disability and the LGBTQI+ movements. While sharing instances, she mentions how trans people who also identify as disabled find it difficult to come out fearing the multiple marginalisations that they may face.
Talking about cross-movement dialogue, CREA, along with other feminist organisations and those working towards the rights of WWDs welcomed the Joint Statement on “Guaranteeing sexual and reproductive health and rights for all women, in particular women with disabilities” made by the UN Committees on the Rights of Persons with Disabilities and on the Elimination of All Forms of Discrimination against Women (CRPD and CEDAW Committees) in 2018, especially because of the progress that the statement made towards abortion rights of WWDs.
CREA convened the Global dialogue on Abortion, Pre-natal testing and Disability in Nairobi Kenya in October, 2018 that brought together feminists organisations and activists, organisations and activists working on SRHR and rights of WWDs, the aim of which was to steer conversation on human rights violation of women and WWDs while exercising SRHR. The convention was also important as it reaffirmed the need to have more dialogues on the intersection of SRHR and disability. The Nairobi Principles, an outcome of the Global Dialogue, is a significant document to rekindle cross movement dialogue around disability, SRHR and women’s rights as well as to offer guiding principles for rights-based organisations to navigate work around advancing sexual and reproductive health rights for WWDs. Amongst other important reaffirming principles around the rights of WWDs, the Nairobi Principles asserts the inclusion of WWDs in SRH-specific debates, not just in discourses within the disability constituency. In addition, autonomy in decision-making of WWDs in regards to reproductive justice that includes choice of abortion, choice of reproduction, and speaking against the violation of sexual and reproductive rights by coercion, forced abortion, contraception, and sterilization has also been reaffirmed in the principles.
Civil societies and rights-based networks across South Asia have played significant roles for advancing the rights of WWDs both in national and global platforms. One of the many examples is the National Forum for Women with Disabilities (NFWWD) in Pakistan, which imparts information to women about SRHR and pleasure[11]. Moreover, they train WWDs to become peer educators for other WWDs in further imparting information and providing support in cases of sexual violence. The Bac Tu Liem Association of people with disabilities in Hanoi, Vietnam[12], conducted two training programmes and an experience exchange programme on Sexual and Reproductive Health rights that aimed at addressing the gap faced by young people with disabilities in accessing and talking about their SRHR due to cultural beliefs. The programme brought some of the young people with disabilities in Vietnam together and provided a platform where they could share their SRHR experiences, and the barriers, stigma, and discrimination that they face due to misguided notions of sexuality. When YUWA, a youth-led organisation in Nepal started engaging with young people with disabilities, it was found that there was a lack of information on SRHR and sexuality around aspects like bodily changes, youth-friendly services, and relationships. They started engaging with disability rights organisations and started the process of imparting information on all of the above[13]. Shampa Sengupta of Sruti Disability Rights Centre in India also talks in an interview about the inclusion of sexuality and SRH education in the curriculum of some of the schools for people with disabilities. Nidhi Goyal, founder of Rising Flame, integrates the perspective of disability and sexuality in the training programmes organised for young people by using media as a tool.
There is a huge need to work on the advocacy component in order to ensure the sexual and reproductive rights of WWDs are met. One excellent example of advocacy is the efforts by the National Platform for the Rights of the Disabled (NRPD) in India. Their advocacy with the Justice Verma Committee for a strong monitoring mechanism for addressing sexual violence of WWDs resulted in the Committee recognising the problems faced by WWDs in accessing the judicial system. The Committee made amendments in the criminal law from the perspective of WWDs while also asserting the need for sexuality education among young people with disabilities.[14] The Count Me In Study by CREA highlights the example of Nepal where there is a lack of inter-movement advocacy between the feminist and disability rights movements, as is the case in many other South Asian countries. Similarly, a working paper on Disability and Sexuality by TARSHI also highlights that there is still a long way to go in establishing proper linkages between disability and sexuality, and that delving into deeper research will be further instrumental in strategic designing, critical thinking, policy formulation and planning for advocacy.[15] Making this process participative by including WWDs will yield better results on the path towards disability justice.
[1] Pooja Badrinath (2017), ‘Reluctance or Ignorance: Ensuring SRHR of Women With Disabilities in Legislation, Women with Disabilities :Disabled, Sexual and Reproductive, 23:3,33-35. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[2] Maxwell, Jane, Julia Watts Belser, and Darlena David. 2007. Sexuality. In A Health Handbook for Women with
Disabilities, 141-156. Berkeley: Hesperian. http://www.hesperian.info/assets/wwd/07_Sexuality.pdf.
[3] Nidhi Goyal (2017) Denial of sexual rights: insights from lives of
women with visual impairment in India, Reproductive Health Matters, 25:50, 138-146, DOI:
10.1080/09688080.2017.1338492
[4] Rupsa Mallik (2017), Women With Disabilities: Parenting and Reproduction, arrow for change, Women with Disabilities:Disabled, Sexual and Reproductive, 23:3, 5-7. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[5] An interview with Ratnaboli Ray (2017), ‘We Are Sexual Beings’- Bringing Sexuality to the forefront of Mental Health programs, Women with Disabilities:Disabled, Sexual and Reproductive, 23:3,21-23. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[6] Niluka Gunawardena (2017), ‘Setting the Agenda on the SRHR of disabled women in Sri Lanka, Women with Disabilities:Disabled, Sexual and Reproductive, 23:3,10-12. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[7] Ibid.
[8] (2012) Count me IN!: Research report on violence against disabled, lesbian, and sex-working women in Bangladesh, India, and Nepal, Reproductive Health Matters, 20:40, 198-206, DOI: 10.1016/S0968-8080(12)40651-6
[9] Renu Addlakha, Janet Price & Shirin Heidari (2017) Disability and sexuality:
Claiming sexual and reproductive rights, Reproductive Health Matters, 25:50, 4-9. Retrieved from https://www.tandfonline.com/doi/full/10.1080/09688080.2017.1336375
[10] In a live lecture on “My Reproductive Rights, My Life” in CREA’s 6th Disability Sexuality and Rights Online Institute, 2020, https://creaworld.org/our-work/dsroi/
[11]Rashid Mehmood Khan (2017) Addressing SRHR concerns faced by Persons with Disabilities in Pakistan, Women with Disabilities:Disabled, Sexual and Reproductive, 23:3,26-27. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[12]Hyen Do (2017), Raising Awareness on SRHR for People with Disabilities: Towards Inclusion of People with Disabilities in Hanoi, Vietnam, Women with Disabilities: Disabled, Sexual and Reproductive, 23:3,25-26. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[13]Amit Timilsina (2017), Addressing Sexual and Reproductive Health Needs of Young People with Disabilities in Nepal, Women with Disabilities: Disabled, Sexual and Reproductive, 23:3,24-25. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[14] Shampa Sengupta, Muralidharan (2017), Success in Advocacy: Positive changes in Laws in India, Women with Disabilities:Disabled, Sexual and Reproductive, 23:3,12-14. Retrieved from https://arrow.org.my/wp-content/uploads/2017/10/AFC_23_3_2017.pdf
[15] Sexuality and Disability in the Indian Context, Working paper TARSHI (2018), Retrieved from https://tarshi.net/inplainspeak/tarshis-corner-working-paper-sexuality-and-disability-in-the-indian-context-2018/
Cover Image: Pixabay
