What is water?

In my doctoral research I dive into water. But what are we actually talking about when we speak of water; what is water? I can imagine a river, a lake or an ocean, rain or the liquid that pours from the shower, that fills the bottles I take with me every day, or the pool I swim in. Or it is simply the famous H2O?

Research project: Imagining Water

As of September 2018, I’m working on a PhD research that revolves around ecological movements, imaginaries of water, and relationships between humans and nonhumans in the diverse contexts of Ecuador and the Netherlands. What is this research about?

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.