Body, Love and Disability: Stories from South Africa
Xante Hunt, Leslie Swartz and others, 2021
Why is a person in a wheelchair asked what happened to them, but rarely asked whether they have a partner? Researchers from South Africa gave cameras to thirteen people with physical disabilities and interviewed almost two thousand of their compatriots. The result is a book about the myth of the sexless person, about beauty, masculinity and parenthood, told by the participants themselves.
Who it is for
For anyone who wants to understand how people with physical disabilities experience desire, closeness and attractiveness, and for everyone who has wondered whom society considers desirable, and why.
I love myself as I am, and the body I live in, with all its imperfections.
The question asked instead of an introduction
Mandla was in a car accident in 2010. Since then he sometimes walks on crutches and sometimes uses a wheelchair. The women he knows like to tease him: “Come here, I’ll marry you.” And right away they add: “And if I do, how are you going to satisfy me in bed?” Mandla answers them straight: “That’s your problem. You look at people with spinal injuries and think they don’t have sex. That is your big mistake. We can have sex and live a normal life, like everyone else.”
This book grew out of a study that ran in South Africa from 2015 to 2017. Six researchers, some of whom live with disability themselves, asked 1,990 South Africans what they think about the sex lives of people with physical disabilities. Thirteen men and women with such disabilities were given cameras and three months. They were asked to shoot not explicit images, but what their sexuality means to them. The method is called photovoice: the person decides what to tell. Several participants later wrote chapters of the book about themselves.
The authors ask you to remember one main conclusion, even if nothing else from the book stays with you. People with disabilities in South Africa are poorer and less often get an education, not because of their limitations, but because the very structure of society, the job market and schools shuts them out. It is the same with love: according to the authors, the difficulties come more from the views of the world “outside” than from the body itself.
Next you will meet Pride, who was told at school that she would never have a boyfriend, the former model Cleone, Bongani, who went to a coffee shop for lunch, and Vic, who became a father more than twenty years after his accident. Their stories show clearly how desire, attractiveness and intimacy work for anyone. Let’s start with the steps.
Someone chose the steps at the entrance
When Mandla returned to work after the accident, there was simply a step at the entrance to the building. People with disabilities had never been hired there before. Mandla went to his bosses with his own plan: ramps, a toilet for people with disabilities, parking right at the entrance, and not a single place a wheelchair could not reach. Within a few months everything was done. When he photographed the new ramp for a project, people at work were afraid the photos would reach human rights activists. He explained that he wanted to show how much had been done for him. Now everyone uses this ramp.
The authors use this story to show two views of disability. The medical model places it inside the person: the body is to blame, and the body is what needs fixing. The social model distinguishes impairment from disability. The impairment is in the person, and it becomes a disability where the person runs into a barrier. The steps at the entrance do not have to be there: someone chose them, because they built only for those who walk.
The authors consider both models too simple. Nico, who ended up in a wheelchair at eighteen, photographed a friend who jumps freely into the water. He himself, by his own account, stands at the edge and tells himself that he can go in too. But how does he keep his balance, and who will help him? His freedom is taken away at once by other people’s looks and by his body.
In love, the main step turns out to be beliefs. Survey participants without disabilities were asked what share of people would fit a given statement. On average they decided that 61% of people with physical disabilities and 72% of others are capable of expressing their sexuality, and that 30% of people with disabilities and 25% of others are asexual. The authors call this the myth of asexuality. Asexuality itself is real, and some people identify that way. The trouble is that it is attributed to them from the outside.
The survey also asked for three words about a man and three about a woman with a physical disability. The words almost matched: strong, shy, insecure. Usually stereotypes about men and women differ a great deal, but here gender seems to have been erased. According to the authors, people first see the disability, and only then a man or a woman.
About the author
Xante Hunt studies health and disability at Stellenbosch University in South Africa, and Leslie Swartz is a professor of psychology there. They compiled the book together with Stine Hellum Brøten, Mark Carew, Mussa Chiwaula and Paul Rohleder, and the participants wrote the chapters about themselves. The original was published by Springer (Palgrave Macmillan) as open access under a CC BY 4.0 license.
All books by this author: Xante Hunt, Leslie Swartz and others
Terms from the book
- asexuality
- Polio
- Jordan
- Emma
- Mandla: A participant in the study. After a car accident in 2010 he walks on crutches or uses a wheelchair; his employers rebuilt the building for his needs.
- South Africa: The country in the south of Africa where the study took place.
- Photovoice: A research method (in English, photovoice): participants photograph what matters to the topic themselves, and then discuss the pictures in an interview.
- Pride: A participant in the study, a woman in her forties who has lived with the effects of polio since childhood.
- Medical model: A view of disability as a problem of the body: its cause lies inside the person, and it is the body that must be fixed.
- Social model: A view of disability as the result of barriers in the environment and in society: the impairment is in the person, but it becomes a disability when they are prevented from taking part in life.
- Nico: A participant in the study. He ended up in a wheelchair after an accident at the age of eighteen.
- Symbolic interactionism: An approach in sociology and psychology that studies how the opinions and expectations of others shape the way a person sees themselves.
- Vitiligo: A skin condition in which patches without pigment, pale spots, appear on the skin.
- Quadriplegia: Paralysis of all four limbs, usually after an injury to the cervical spine.
- Khadija: A participant in the study, a woman of middle age with a congenital disability from a traditional Muslim family.
- Riese: Rozabel Riese, a participant in the study and a co-author of the book, a Paralympic athlete. She had polio at the age of eighteen months.
- Scoliosis: A sideways curvature of the spine.
- Mapumulo: Bongani Mapumulo, a participant in the study and a co-author of the book, who studies disability at Stellenbosch University. He has been paralyzed since the age of four.
- Hegemonic masculinity: A concept from research on men: the dominant model of manhood in society, which demands strength, power and composure.
- Tas: A participant in the study, a man a little over thirty. He has lived with a disability since the age of eighteen.
- Simon: A participant in the study, a man in his thirties who uses a wheelchair.
- Sifiso: A participant in the study. He ended up in a wheelchair at the age of twenty-three.
- McKinney: Vic McKinney, a participant in the study and a co-author of the book, a researcher, lecturer and artist from Cape Town. He has been paralyzed from the shoulders down since an accident in 1987.
- Artificial insemination: A way of conception in which prepared sperm is introduced into a woman at a clinic, without sexual intercourse.
- IVF: In vitro fertilization: eggs are fertilized in a laboratory, and the resulting embryo is transferred into the uterus.
- Paralympic Games: The largest international competitions for athletes with disabilities, held after the Olympic Games.
All terms
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