Talking about disability in communities

TALI FEINBERG

Swartz was speaking at a panel discussion on disability and sexuality at the Cape Town Holocaust & Genocide Centre, linked to its current exhibition “Deadly Medicine: Creating the Master Race”, which explores the Nazi regime’s ‘science’ of race and eugenics, and its implications for medical ethics and responsibility today.

In addition, February is Jewish Disability Awareness and Inclusion Month, and this is being marked with a number of events worldwide.

“Ultimately, the discussion and the exhibition asks, ‘Who counts as a person?’” said Swartz. Indeed, the mass murder of the disabled under the Nazi regime was the leap it took to dehumanising and murdering others, including Jews.

Swartz is one of South Africa’s leading academics in disability research. He recently launched his memoir, Able Bodied, which explores the complexities of being the son of a disabled father.

He was joined on the panel by Dr Xanthe Hunt, who is leading a group of researchers at Stellenbosch University exploring disability and sexuality in South Africa; Jenna-Lee Procter, a clinical psychologist who has worked closely with mentally and physically disabled people about their sexual identities; Bongani Mapumulo, the manager of the newly-created special-needs portfolio of the Stellenbosch University SRC; and Cleone Jordan, a disability researcher and activist.

Both Mapumulo and Jordan are disabled. In deeply personal accounts, they shared how they battled to access their sexuality as disabled people, especially because society did not view them as sexual beings. Jordan recounted how she became quadriplegic in a car accident, and one of her first questions to herself and her husband was, “Is there sex after disability?”

In spite of the challenges, Jordan became pregnant, but throughout her journey, she was confronted by doctors and people around her who refused to see disability aligning with a sexual identity, pregnancy, birth, or motherhood.

Mapumulo shared how he became disabled at the age of four, and was sent to boarding school at the age of five. One of five brothers, he battled to reconcile being disabled with being masculine – a strong part of his Zulu culture.

He also struggled to interact with able-bodied young people because he was at a special-needs boarding school. He emphasised that young people of different abilities need to interact regularly with each other. It is only now, as a proudly disabled adult working with students on this topic, that he has been able to reclaim his sexual identity.

Procter described working with an intellectually disabled teenager who had been raped and was exploring her sexual identity. “She is someone on the margins of the margins. Her story demonstrates the need for communities to talk about these issues, and create safe spaces for disabled teens to explore their sexuality,” she said.

Hunt said that she was researching the sexual lives of disabled South Africans and society’s response to it. Following an unprecedented 2 000 responses to a survey she  conducted, she gathered that most South Africans assumed that disabled people were asexual, and that they were less likely to get married and have children. Disabled people responded that they did not have access to family planning services, and were seen as not allowed to be sexual or have children. Furthermore, they were seen as disabled first, male or female second.

“Our interviews explored many of these assumptions,” said Hunt. Ultimately, she hopes this research will serve as an alert to able-bodied society to view disabled people as whole beings, with all the needs, dignity, and rights people deserve.

“Religious communities have the power to exclude people or take the lead regarding inclusion,” said Swartz. “Yes, religion, sex, and disability are all difficult topics, but they need to be discussed.”

He pointed out that it is heartening that many of the Jewish schools are inclusive schools. This is one step closer to teaching our children that people of all abilities are welcome in every way.