“I am blind, and so is love. Get over it!”1
“I get the feeling people think that because I am in a wheelchair there is just a blank space down there.”3
“I’m here. I’m disabled. And I do it. Yes, I do. Even in this body that you can’t imagine anyone doing it with and loving.”2
“Some people misunderstood our relationship, and thought of him as being my caregiver instead of my partner”4
“People would say to me: ‘Why would you want to be tested for HIV? As if you’re able to have sex!”5
“Why do we think that someone who only has one hand would not masturbate with the other? Or that someone who cannot see does not paint her own mental images of the perfect lover?”6
“The sexuality course influenced my perception of my own sexuality. I understand now that first I am a woman and second a person with a disability. I deserve to have a partner, children and a family.”7
“Sexuality is not just physical – it is also socio-cultural, spiritual, and psychological. Everyone has the right to sex education that encompasses all of these aspects.”8
To be human is to be sexual
Just like all human beings, people with a disability are sexual. Those with disabilities are, first and foremost, people: they have the same rights, feelings, sexual desires, needs and possibly family dreams as anybody else. A positive body image and healthy self-esteem helps in pursuing and celebrating a pleasurable and healthy sexual and family life. At the same time, it is necessary to know how to set boundaries and how to protect against sexually transmitted diseases, unwanted pregnancy and in the worst case, sexual violence. In other words: all people – both male and female – with or without disabilities have the same needs in terms of access to and information about ‘sexual and reproductive health and rights’: SRHR, so that they can celebrate satisfying sex and having a family if, when, and with whom they want.
However, the SRHR needs of people with disabilities often remain unmet. A profound worldwide misconception exists, that suggests people with disabilities are either asexual or hypersexual (without inhibitions)9. In terms of love, relationships and having children, it is thought to be best if men and women with disabilities do not venture into these areas, for their own sake and that of society. With the imposition of such negative ideas, and telling them they are undesirable and not worthy of desires, it is likely that the self-esteem of people with disabilities is suppressed. As a result, they might not seek access to SRHR services of their own accord10.
Not only disability, but sexuality too is unmentionable in many cultures and is often shrouded in shame. In various (traditional) societies, it is taboo to openly discuss issues like menstruation, relationships, sexual diversity, safe and pleasurable sex and family planning11/12. This is even more so when it comes to sexual exploitation and abuse, let alone when people who have a disability are involved.
Due to the above-mentioned negative perceptions, people with disabilities are more likely to experience the downsides rather than the upsides of sexuality and family life than others. Whilst more research and data are needed, the figures below highlight some of the key issues from recent studies related to SRHR and disability:
- People with disabilities are as sexually active as their non-disabled peers13;
- People with disabilities are twice as likely to be on the receiving end of inadequately skilled healthcare providers at improper facilities. They are three times more likely to be denied healthcare and four times more likely to be treated badly by healthcare systems14;
- People with a disability are three times more likely to become a victim of sexual, emotional and physical violence. People with intellectual and mental disabilities are the most vulnerable15;
- Children with a disability are almost three times more likely to experience sexual violence than their peers without disabilities, and for children with an intellectual disability this is even higher: 4.6 times15;
- Between 40 and 68 percent of young women with disabilities and 16 to 30 percent of young men with disabilities experience sexual violence before the age of eighteen16;
- Forced sterilisation of women and girls with disabilities happens up to three times more often than amongst their peers17.
- All risk factors associated with HIV (poverty, lack of education, lack of SRHR information, higher risk of violence and rape) are higher for individuals with a disability13.
Working towards inclusion is not necessarily difficult. On the contrary, existing services can be easily adapted to suit people with disabilities15. Good practices, whereby SRHR and disability inclusion come together, do exist but are rarely documented. This book aims to bring these practices to the forefront, so that barriers can be broken down and bridges can be built between the worlds of SRHR and disability. To Leave No One Behind – an overarching theme in the Sustainable Development Goals18 (SDGs) – in addressing sexual and reproductive health and rights, all stakeholders, including governments, SRH service providers, NGOs, activists, people with disabilities and their parents have an important contribution to make. This can be done most effectively when stakeholders link up with each other and work alongside each other. Together, we can work towards ensuring that the sexual and reproductive health and rights of people with disabilities are fully recognised and addressed, in turn, empowering people with disabilities to make their own decisions about their sexual and family lives.
In November 2017, the United Nations Special Rapporteur on the Rights of People with Disabilities, Ms. Catalina Devandas Aguilar, was visiting the Netherlands for an expert meeting on disability and sexuality organised by the Dutch Coalition on Disability and Development (DCDD) and Share-Net International, the knowledge platform on sexual and reproductive health and rights. I had the honor to present her the book ‘Everybody Matters: good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes’, which I authored and edited on behalf of DCDD and Share-Net.
Illustrations are handmade by De Beeldvormers.
Mittal, A. (2017). Bad Girls with Aditi Mittal |Ep 1| Nidhi Goyal. [YouTube-video] Retrieved October 22, 2017, from https://www.youtube.com/watch?v=9QBF23j0uT4.
Sexuality & Disability (n.d.) Retrieved October 22, 2017, from sexualityanddisability.org/meet-the-team-2/
Kaufman M., Silverberg C., Odette F. (2003). The Ultimate Guide to Sex and Disability.San Francisco: Cleis Press.
TedX Talks (2017). Sexuality and Disability: Forging Identity in a World that Leaves You Out | Gaelynn Lea | TEDxYale. [YouTube-video]. Retrieved October 26, 2017, from http://www.embracingdiversity.net/report/sexual-and-reproductive-health-and-rights-ofgirls-and-young-women-with-disabilities_1026
Leonard Cheshire Disability Zimbabwe (2017). Leonard Chesire Disability Zimbabwe SRH Programme. [YouTube-video]. Retrieved October 22, 2017, from https://www.youtube.com/watch?v=UrckPif9Ec0&feature=youtu.be
Datta, B, (2015). Dear Sonal, do you really think that someone who doesn’t have one hand doesn’t masturbate with the other? [Blog post] Retrieved October 31. 2017, from http://blog.sexualityanddisability.org/2015/06/dear-sonal-do-you-really-think-thatsomeone-who-doesnt-have-one-hand-doesnt-masturbate-with-the-other/
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Addlakha, R., Price J., Heidari, S. (2017). Disability and sexuality: claiming sexual and reproductive rights. Reproductive Health Matters, 25:50, 4-9.
Ahumuza S.E. et al (2014). Challenges in accessing sexual and reproductive health services by people with physical disabilities in Kampala, Uganda. Reproductive Health. 11:59.
WHO, UNESCO, UNFPA (2015). Sexual and reproductive health and rights in Asia and the Pacific: a review of issues, policies and programmes. Bangkok, UNFPA.
Altinyelken H. K., Olthoff J. (2014). Education and sexual and reproductive health and rights: a review of the critical debates. The Amsterdam Institute for Social Science Research (AISSR). Amsterdam: University of Amsterdam.
World Bank, Yale University (2004). HIV/AIDS and Disability: capturing hidden voices. Lancet, 361, 1401–1402.
WHO (2011). Better health for people with disabilities. [Infographic] retrieved October 30, 2017, from http://www.who.int/disabilities/facts/Infographic_en_pdf.pdf?ua=1
UNFPA, WHO (2009). Promoting sexual and reproductive health for persons with disabilities – a guidance note. Geneva: WHO press.
Management Sciences for Health (MSH) (n.d.). We Decide initiative for young persons with disabilities (Infographic). [Internet] retrieved October 5, 2017, from https://www.msh.org/sites/msh.org/files/we_decide_infographic.pdf
UN Special Rapporteur on the Rights of Persons with Disabilities (2017). Sexual and health and rights of young women and girls with disabilities. United Nations.
United Nations (2016). The Sustainable Development Goals Report: Leaving no one behind. New York; United Nations Statistics Division.