By Poul Rohleder, Xanthe Hunt and Leslie Swartz
When we interviewed Edward (not his real name), for a research project on disability and sexuality, we talked in his office at a large, maximum-security prison near a large city in South Africa. He spoke of a car accident that had left him paralysed and needing to use a wheelchair, and the impact that this incident five and a half years ago had on his life and sense of identity.
He told us: “I’ve struggled, because if you were born and you were active and now suddenly there’s a change, so you need to accept first that there is this change now. And my movement is limited now and all those things,” he pauses, sucks air in between his teeth, and then adds, “The main thing with a spinal cord injury… you’re going to have a problem with your sexual life because now there’s nothing that is normal at all.”
His comment cuts to the core of an issue for many people with disabilities. What Edward alludes to is not just that “nothing is normal” in physical terms, but, more importantly, in terms of societal perceptions and expectations about sex and bodies. This has been a focus of study conducted by ourselves and a team of colleagues from the University of East London (UK), the Southern African Federation of the Disabled (SAFOD), SINTEF Technology and Society (Norway), and Stellenbosch University (South Africa). The study was concerned with exploring and challenging the misconceptions about disability, sex and sexuality for people with physical disabilities in South Africa.
Edward is one of our participants.
Many people do not consider issues of sexuality – sex, desire and attractiveness – with disability. Many may perceive disability as rendering one damaged, passive and ‘sick’ (not things many associate with sexuality), and we see sexuality as being most often something active, healthy and attractive (not things many associate with disability).
In general, research suggests that many non-disabled people tend to make assumptions about the sexuality of people with disabilities and hold many misconceptions: very often they see people with disabilities as non-sexual (for a review of the literature concerning physical disability and sexuality see Carew et al., 2016). Additionally, what research is conducted on the sexual and reproductive health of people with disabilities tends to be in richer countries of north America and western Europe with much less research conducted in low and middle-income countries (Carew et al., 2017). However, the majority of people with disabilities in the world live in low- and middle- income countries.
During the research interview with Edward, he tells us about the men he works with, ‘the guys’. Working at a prison, and living in the prison compound, the guys are his family and friends, his people and his pack. The camaraderie does not stop them from stripping Edward of his sexuality with their blunt assumptions. He said: “The guys I work with, when they saw my girlfriend had a baby, they asked, ‘Are you sure this is your baby? Maybe someone made this baby for you?’”. They assumed he wouldn’t be able to have a girlfriend, let alone do what is required to make a baby.
Edward’s feeling that nothing is “normal” when it comes to his post-accident sexuality, and his friends’ assumption that he is no longer sexual, are not unusual experiences for people with physical disabilities. However, until recently, little was known, in South Africa at least, about the sexuality of people with disabilities: what sorts of attitudes do they encounter from non-disabled people when it comes to romance, and accessing sexual and reproductive healthcare? how do they experience themselves as sexual beings?
Both of these questions are important: Sexuality is a two-sided coin: part of our experience of it is “in here” – how we think and feel about ourselves as sexual beings, what we think about our gender and how we feel about sex. But another part of our sexuality is very much “out there” – what others’ behaviour tells us about our attractiveness, what their actions lead us to believe about what is ‘normal’ and what is sexual. Others’ attitudes create barriers for people with disabilities having sexual and reproductive health rights and access to care.
As part of our project, we wanted to find out about the attitudes of non-disabled people, towards the sexuality of people with physical disabilities. We conducted a survey measuring respondents’ attitudes towards dating, attractiveness, sexuality, sexual rights, and need for sexual and reproductive health care of people with physical disabilities. We advertised the survey widely through social media, major newspapers, student email lists, and through field researchers. We obtained 1990 respondents in total, of which 1865 reported being non-disabled.
In the survey, we asked respondents about their perception as to the need for sexual and reproductive health care for people with disabilities as well as the perceived needs for non-disabled people.
What we found was not surprising, but it was worrying: the respondents tended to believe that disabled people had fewer sexual and reproductive rights, and had less need for sexual and reproductive health services, than non-disabled people (Hunt et al., 2017). The survey also contained story completion tasks, which revealed mostly negative, stereotyped views about dating people with physical disabilities, and about their sexuality (Hunt et al., 2018).
Taken together, both sets of information suggest that non-disabled South Africans tend to desexualise physically disabled people, seeing them as less sexual than non-disabled people, and feeling disinclined to view them romantically. The ‘out there’ side of the coin, it would seem, is unfavourable.
Finding out about the ‘in here’ side, on the other hand, is a little more complicated: what are the experiences of sexuality amongst people with physical disabilities in South Africa?
It is complicated because talking about sexuality (which includes gender, sexual orientation, sexual activity, reproduction and related activities and identities) is – often – a taboo. It is deeply private, but also highly political. Further, it is not a subject for which yes or no questions, or even scales can tell us enough. We found a fruitful method of inquiry was to use photovoice as a method to elicit personal stories and narratives in qualitative interviews with 13 participants with physical disabilities, one of whom is Edward.
Given the silences and awkwardness which may characterise interviewing people about their sexuality, this method was ideally suited to this study. It also allowed our participants to take a more active role in the project – rather than being passive subjects who ‘gave’ us information to make a story out of. We worked collaboratively on creating images as well as a documentary film that depicted some of their views and experiences. All participants happened to identify as heterosexual, and so the focus was on heterosexual sexual relationships.
As one of the participants, Edward, explains: “You see this ramp? If you look at it, it must look like this. You can see it was specially made as well, the ramp. There was no ramp. It was just the step”.
Like many of our photographer-participants, Edward chose to take photos which seem to have less to do with disability, and more to do with access. In fact, many of them seem to bear little resemblance to the kinds of images which many of us would be used to associating with sexuality. But, as the participants speak around the images, a picture of their relevance grows: the ramps, doors or inaccessible spaces represented in their photos are standing in for the sexual access and social acceptance which they desire.
A female participant, Mary, draws a no-entry sign, and says how this represents a feeling she has carried inside for most of her life when it comes to relationships. She explains: “I come from a conservative background, a conservative Christian background, so for me, as I was growing up, the whole thing of sexuality and even marrying was very closely tied to having children. And everybody just took for granted, because I couldn’t have children, I wouldn’t marry”.
This sentiment is brought into sharp relief by the findings from the survey part of our study: that non-disabled people seem reticent to grant the kinds of access and acceptance which people with physical disabilities desire (and have the right to).
Our survey responses teach us something about the kinds of attitudes which people with physical disabilities might encounter in their daily lives: the survey gave us an impression of non-disabled respondents’ discomfort with the sexuality of disabled people. The photographs taken by the interview participants bring life to the impact of this discomfort.
But the photographs, and the photovoice project, also opened up a space for thinking about the sexuality of people with physical disabilities in South Africa. Together with some of the participants, we created a short documentary video revealing the experiences of 2 men and 2 women with physical disabilities in South Africa. The video and some of the photographs and personal stories of participants are all available on our project website: www.disabilityandsexualityproject.com. We hope that the website might be used as a resource for raising awareness and facilitating education about disability and sexuality at schools and other forums. Such work, as well as the sustained activism of disability organisations and individuals with disabilities, will be necessary if the goals outlined in the United Nations’ Convention on the Rights of Persons with Disabilities is to be realised, full inclusion, participation, and sexual citizenship for people with disabilities to be achieved.
Carew, M., Rohleder, P., Chiwaula, M., Braathen, S. H., Hunt, X., & Swartz, L. (2016). The myth of asexuality? Disability stigma as a barrier to sexual relationships in South Africa: Literature review. Literature review prepared for the Federation of Applied Disability Research. (http://www.firah.org/centre-ressources/upload/publications/rl/asexualite/rl-axesuality-en.pdf).
Carew, M., Braathen, S., Swartz, L., Hunt, X., & Rohleder, P. (2017). The sexual lives of people with disabilities within low- and middle-income countries: A scoping study of studies published in English. Global Health Action, 10:1, 1337342. Available as Open Access: http://www.tandfonline.com/doi/abs/10.1080/16549716.2017.1337342
Hunt, X., Carew, M., Braathen, S.H., Swartz, L., Chiwaula, M., & Rohleder, P. (2017). The sexual and reproductive rights and benefit derived from sexual and reproductive health services of people with physical disabilities in South Africa: beliefs of non-disabled people. Reproductive Health Matters 25:50, 66-79. Available as Open Access: http://www.tandfonline.com/doi/full/10.1080/09688080.2017.1332949?src=recsys
Hunt, X., Swartz, L., Carew, M., Braathen, S., Chiwaula, M., & Rohleder, P. (2018). Dating persons with physical disabilities: the perceptions of South Africans without disabilities. Culture, Health & Sexuality, 20(2), 141-155.
More details about the authors:
Poul Rohleder (University of East London, UK)
Xantha Hunt (Stellenbosch University)
Leslie Swartz (Stellenbosch University)