By Ebba Olsson
When we speak of accessibility rights for people with disabilities, we generally talk about access to the public realm and to public spaces. But what about access to the private realm of sexuality and relationships? I recently had time to read a book that has been on my mind for quite a while, Loneliness and its Opposite: Sex, Disability and the Ethics of Engagement by Don Kulick and Jens Rydström. It covers a subject which I am pretty certain most people rarely – if ever – think about: sex and disability.
The authors of Loneliness and its Opposite have conducted a study about how sexuality among people with disabilities is managed in Sweden compared to Denmark. The study includes both people with significant physical disabilities, such as severe cerebral palsy, and significant intellectual disabilities, such as severe Down syndrome. The conclusion they reach is that “In Sweden, the sexuality of people with disabilities is denied, repressed, and discouraged. In Denmark, on the contrary, the sexuality of people with disabilities is acknowledged, discussed, and facilitated”. I think the Swedish results are troubling since sex is an important aspect of most people’s lives. The United Nations include sexuality in their document Standard Rules on the Equalization of Opportunities for Persons with Disabilities, where they state that “Persons with disabilities must not be denied the opportunity to experience their sexuality, have sexual relationships and experience parenthood”. In this passage sexuality is regarded as a question of equality. As humans, we value intimate ties to others and the experience of sexual satisfaction. A just society does not provide everyone with sexual partners, but it provides access to sexuality and relationships on equal grounds. In line with how we provide services to combat other inequalities, we should not deny people access to intimacy solely because of their disabilities.
What should be done differently to achieve such equality? In Sweden, we have no concrete guidelines which means that in practice, the sexuality of people with disabilities is ignored. I have some personal experience with the Swedish system since I work part-time in a group home and since my brother has a disability. In these settings, I have only encountered the topic of sex in discussions about sexual abuse. This is important, but I wonder if it is effective when none of the positive aspects of sexuality are explained. Furthermore, even comprehensive sex education is not sufficient to give access to sexuality for people with significant disabilities – they also need facilitation. Similar to how we facilitate activities like showering, we would need to provide sexual assistance. Here is where discussions in Sweden have stopped abruptly. How do you provide someone with sexual assistance without having sex with them? The Danes have figured this out. The foundation of the Danish model is their Guidelines about Sexuality – Regardless of Handicap document, which clearly states what practices a helper may perform, what a helper is prohibited from doing, and what a helper is obligated to do. A helper may provide assistance that allows individuals to masturbate or to have sexual relations with partners who have limited mobility, while they are prohibited from having sex with the person being helped. They are obligated to make sure that a person who has asked for help gets assistance, though not necessarily from themselves – a helper who does not want to get involved has to report to someone else. Denmark also educates sexual advisors who assist adults according to these guidelines. If someone needs assistance to masturbate, for example, a sexual advisor will formulate a plan of action together with the individual and then assist with practicalities such as helping them to position themself comfortably in bed with a sex aid. This method removes the privacy aspect of one’s sexual life, but after all, few aspects of life are private for people with significant disabilities. If privacy comes at the cost of a life-long deprivation of sexual satisfaction, is it worth it? The individual in question should make this decision, nobody else.
The most controversial aspect of the Danish model is its inclusion of assistance to contact sex workers, but sex work is a small aspect of sexual assistance. It is also irrelevant in the Swedish context where it is illegal to buy sex. And yet, discussions about sexual assistance often end up in discussions about sex work. This is frustrating as the Danish model shows us many other – and better – possibilities. Most importantly, it proves that sexuality can be discussed openly rather than swept under the rug. This spirit of openness is inspiring. Instead of assuming all sexual assistance is either sex work or sexual abuse, we should think about how we can facilitate sex for people with disabilities in Sweden. It bothers me that for decades we forced people with disabilities to undergo compulsory sterilisations, and instead of learning from this frightful past we still refuse to accept that people with significant disabilities are adults with the right to a sexuality. We still turn a blind eye to any interest in sex, as we would to a child. We use excuses such as “sex is a private matter” while still subjecting people to the risk of sexual abuse due to our lack of guidelines. And when we do not engage in this issue at all, we deprive people of their right to intimacy and sexual satisfaction. Why are we so afraid of their sexuality?
Illustration: Rebecca Mariana Bengtsson
Ebba Olsson is a student of the Bachelor’s Programme in Peace and Development Studies in Uppsala. She has a tendency to tell long, meaningless anecdotes to everyone she meets. She also loves to send letters and postcards to friends, both while traveling and when she’s bored at home.