To be human is to be sexual

Illustrations are made by De Beeldvormers.

“I am blind, and so is love. Get over it!”¹

“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

“I get the feeling people think that because I am in a wheelchair there is just a blank space down there.”³

“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

“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

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.

This should be needless to say. 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 many societies, it is taboo to openly discuss issues like menstruation, relationships, sexual diversity, safe and pleasurable sex and family planning^11/12. 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.

Everybody Matters

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.

Read the book here: Everybody Matters: good practices for inclusion of people with disabilities in sexual and reproductive health and rights programmes

In November 2017, the United Nations Special Rapporteur on the Rights of People with Disabilities, 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 International. 

Activism, intersectional feminism and comedy

Intersectional feminist and disability rights activist Nidhi Goyal from Mumbai, India, raises her voice in all possible ways to promote disability rights and gender justice. She is a trainer, writer, researcher and advocate, from the grassroots to the international level. On top of all her serious work, she performs in her own comedy shows, using the art to perform issue based comedy and raise awareness on disability, gender and sexuality.

“I am Nidhi Goyal and I am blind. Yes, I am blind and so is love: get over it.” That is how Goyal starts her show in a comedy club in Mumbai. In her show, she also shares the reaction of a man who had seen her profile on matrimonial site Shaadi.com. “I remember this one educated, progressive man who called to say I would be perfect for his son, but from what he was saying, I guessed he had not read about my disability. I clarified this with him because it had happened too many times by then. He paused. People generally go into shock, because they do not believe that someone who’s disabled will even be on the website. They can’t connect the picture they’ve conjured up of the well-educated, outgoing girl from the profile with someone who is also visually impaired. So after a few moments of silence, the man said, ‘Really?’ So I repeated myself: ‘Yes, I cannot see. I am blind. Is that okay?’ He said, ‘Yes, no, no, uh, I think uh… ya… good luck,’ before he hung up. That is when I learned disability is indeed contagious: I said I am visually impaired, he became speech impaired!”

Challenging misconceptions

Her shows are about her daily experiences and that of her friends who have a disability, mostly in interaction with non-disabled people. Her performance reveals different layers of how people think about those with disabilities and dating, relationships, sexuality or having children. “It is the small daily conversations that show how deeply prejudice and
stigma are entrenched in society. The misconceptions are not only on asexuality or hypersexuality, but also, for example, that disability breeds disability.”

“Apparently it is indigestible that a woman with a disability is standing on stage, talking about sexuality“

With comedy, Goyal wants people to just sit, listen and enjoy. To listen and learn is easier like this, she thinks, because the audience does not feel targeted directly. After her debut, she received mixed reactions. “One woman came up to me and said: ‘I laughed a lot, but I was also cringing and thinking, oh, yes, I have these misconceptions too.’ She said that it had opened her eyes. On the other hand, I noticed that apparently it is indigestible that a woman with a disability is standing on stage, talking about sexuality. It is a shock for people, as we do not expect that someone with a disability would be funny and could laugh at her disability experiences. When they do not laugh, it is fine, you change your jokes, talk to them: eventually they get it. As I always say, we, people with disabilities, are laughing at the silly, ignorant and prejudiced behaviour that society exhibits. If you do not get it, the ultimate joke is on you.”

Fighting at all levels

When Goyal was 15 years old, she was diagnosed with retinitis pigmentosa, a an incurable irreversible degenerative eye disorder. Within a few years, she would slowly turn blind. Initially then, Goyal had to make some quick career choices since she had dreamt of becoming a portrait painter. Her visual impairment and the gradual loss of eye sight layered her education opportunities, her navigation of an inaccessible city, and social barriers. Her eyesight also began making the difference in interaction with her classmates and college friends. “I was lucky that my parents were very understanding and strong. My father was advised to hide my disability and get me married as soon as I turned 18, because ‘of course’ I would not be able to find someone once I was completely blind, that was the assumption. My father rejected this. This is when I realised how strong the stigma is in society is.

Today, she is fighting against this stigma. Alongside her comedy show, which she performs in India and globally, the spectrum of work that Nidhi Goyal exercises is tremendous. “After my Mass Media studies, I worked as a journalist, writing about women, disabled women in particular, but at one point I decided that this was not enough, I needed to do more. That is how I entered the development sector and the broader field of activism.” Nidhi Goyal works with a range of women’s rights and human rights organisations. She is the program director of the Sexuality and Disability Program at a Mumbai based non-profit, Point of View, where she has researched and co-authored the online platform www.sexualityanddisability.org. This website discusses the sexual rights of women with disabilities, their bodies, sexuality, relationships, marriage, parenting, violence and abuse. Under this program she also conducts trainings for people with disabilities on these topics. Moreover, she is a consultant researcher with Human Rights Watch and has consulted with the feminist human rights organisation CREA on disability policy  and international human rights mechanisms. She writes in books, academic journals, news platforms and blogs about her experiences and opinions to raise awareness on issues faced by girls and women with disabilities. Finally, she is on the civil society advisory group of the UN Women’s Executive Director, and takes place in the advisory board of the innovative grant facility VOICE (initiated by the Dutch Ministry of Foreign Affairs).

“The interaction with so many people with disability, knowing their stories and contexts, that is what I like the most. I love that I can stand with them, embrace their struggles and fight and raise my voice, and can advocate. I’m very conscious of the privilege that I have in accessing and working with the grassroots as well as the national and international policy arenas. I think I gained this access because I learnt early on in my disability that there are alternate realities, and becauseI really like to work with people within their context. I know it may not be a good idea to go into the interiors of an underdeveloped or developing country to tell people: look, CRPD20 gives you these rights. That makes no sense: who is CRPD? For a woman with a disability living in rural India whofaces isolation, stigma, non-acceptance, and abandonment – in her context, she does not care about human rights or mechanisms. That is a conversation for the policy level.”

Having no dreams is impossible

“Whilst working with a lot of women and girls with disabilities, I have seen that many of them have strongly internalised almost all gendered prejudices including the idea imposed on them by others that they do not have desires, that they do not have the right to dream, and that they are undesirable. They are convinced that no one would ever be with them and that they should be happy with anyone who might ‘want them’. That is what they have heard their entire lives. That is why the first step is to empower them so that they can begin challenging this stigma around them and inside them. During our trainings with Point of View, we realised that women with disabilities are rarely asked to dream. They do not dare to have ambitions in their personal lives. One of the girls said: ‘I have no dreams.’ And I said ‘that is impossible. As a simple example, do you not feel like dressing differently, do you not love a sari?’
‘I would love to wear a sari.’
‘What is stopping you?’
‘Well, because I’m disabled.’
‘But what is the connection?’
‘I do not have functioning body parts from my waist downwards,
why would you wear a sari when you have no legs?’
You see, it is not only a question of sexuality as sex, but also about what you want to wear, who you want to be, how you want others to see you, how to express yourself.” How does change happen? “I think the best way to positively change this issue of disability and sexuality, is to work on raising awareness and to make sure people with disabilities are visible in public spaces in order to get rid of the prevalent stigma. What would also help is positive or ‘normal’ representations in mainstream media including advertisements, films, television, etcetera. At the same time, we must empower people with disabilities to become self-confident and live full lives like anyone else.”

“It is not only a question of sexuality as sex, but also about what you want to wear, who you want to be, how you want others to see you, and how you express yourself”

According to Goyal, one of the gaps to be filled by NGOs and governments is the lack of documentation. “We are invisible because numbers are invisible, our issues are invisible, and research is, to a large extent, invisible. That starts a cycle of invisibility and suppression and a neglect of rights. Disability inclusion should be measured at many different levels: in accessibility, in comprehensive sexuality education, and in health services.”

The purpose is not to stick to disability related spaces, or research journals, for a one-time engagement. “Disability should be seen as a cross-cutting issue with many other identities and issues. So, for example, if a sexual rights or health journal comes out with one special issue on disability and encourages research it would be a great first step. But in the long run, disability research needs to become a part of health, reproductive rights, sexual rights researches and discourses. We need to open up spaces and make them more inclusive rather than, for example, having that one panel of marginalised voices in a women’s rights or sexual rights conference. Similarly, all plans, policies and programs at national or global levels need to consider and include disability rather than only having a separate law or policy for people with disabilities. That would be real inclusion.”

Is there already progress? Yes, “Small efforts are already going well. However, they are not yet visible enough and the various ‘efforts’ are not working together or in synchronicity. Organisations with different expertise, engaged in disability rights and sexuality rights, should join forces. Disability rights groups may not have a clear understanding of sexuality and what it means. They have often internalised the stigma around sexuality and certainly around gender. They need to talk with sexuality rights groups. They need to open up and talk and start a movement or a collective of some sort, to engage in and gain an understanding of what sexuality is. In conservative regions in particular, it will be important to first change the prevalent misconceptions of sexuality in the disability-rights groups and coalitions themselves. At the same time, the issues of girls and women with disabilities should be led by disabled women and not by their male counterparts. Similarly,
organisations working on sexual and reproductive health and rights should deal with their prejudices and work together with disability groups to be sensitised  and to eventually become inclusive.”

A rising flame

Although Goyal is mostly working with women and girls with disabilities, men and boys face difficulties and stigma, too. “For men and boys, their masculinity and power is automatically assumed by patriarchal society, but for those males with a disability, this is not necessarily the case: often, their masculinity and power is threatened and they are perceived as ‘not man enough’. Therefore, in trainings, advocacy or campaigns on disability and sexuality we cannot leave out gender and identity.”

Goyal is now expanding her work. In September 2017, she launched her organisation ‘Rising Flame’. “I want people with disabilities to find their voice, rise for their rights, become self-advocates and leaders who embody the change they want to see. Through our various programs we will use technology, arts, networks, mentoring and social access and support to build an inclusive world where diverse bodies and minds can live with dignity.”

“My dream is that intersectionality becomes a concept that people and societies understand effortlessly, where multiple power structures are broken down, where all the movements are converging and working with each other: the women’s movement and the disability movement. In the meantime, I keep working on the intersection of these, negotiating, pushing, and rising for my rights and rights of people with disabilities.”

Drawings by De Beeldvormers