Making space for the unusual: A career in disability studies

Research highlights

Swartz qualified as a clinical psychologist in 1982 through the University of Cape Town (UCT). His research career as a UCT academic started with studies on cultural issues in mental health, the influence of state violence and political oppression on children, and how racism was reproduced in South Africa’s mental health sector in the 1990s.

After joining SU, he was seconded to the Human Sciences Research Council (HSRC) for a period in the 2000s.

Swartz has addressed both the World Federation for Mental Health and the International Paralympic Committee, and is a part of the African Network for Evidence to Action in Disability.

Moreover, he has seen 47 of his doctorate students graduate and has another 10 waiting in the wings.

This project and paper reviewer has played an important role in many national and international studies. This includes being the African principal investigator in a major four-country study on disability and access to healthcare, and the senior African academic on the Bridging the Gap project, which explored access to a range of services in various countries on the continent. He also led a group advising the International Paralympic Committee on mental health issues among elite Paralympians.

Swartz, despite his hawk-eye for detail, considers himself a bad planner. Once he gets down to it, though, writing comes easily – so much so that he has published over 450 papers and other academic outputs since his first one in 1982.

Impact factors, ratings and citations aside, Swartz believes his greatest contribution to the field of community psychology has been in the form of his academic development of others, his public engagement on topics he deeply cares for, and his collaboration with people who don’t typically form part of academia.

He has presented capacity building and writing workshops for researchers in various African countries, and workshops for Hospice spiritual carers and healthcare personnel amid the COVID-19 pandemic.

Recognition earned

In 2012, Swartz was the founding editor-in-chief of the African Journal of Disability. In 2021, he became the first psychologist to be appointed editor-in-chief of the South African Journal of Science. He is also the first person from outside Scandinavia to serve as editor-in-chief of the Scandinavian Journal of Disability Research.

He is still the only psychologist ever to have won the Academy of Science of South Africa’s Gold Medal for Science to Society, and be selected as a finalist for the National Science and Technology Forum’s Lifetime Achievement Award, which occurred in 2019 and 2020, respectively.

In 2014, he was promoted to the level of distinguished professor at SU. In 2015, he received the Stals Award for service to psychology from the Suid-Afrikaanse Akademie vir Wetenskap en Kuns, and in 2017 a SU Chancellor’s Award.

Although grateful for such accolades, he finds systems in which rewards and recognition are “so individualised” problematic.

“The academy (in South Africa in particular) must pay closer attention to rewarding working together, and build the capacity of everyone through learning from diversity in all its forms.”

Recognition earned

The word ‘unusual’ often crops up when Swartz talks about his life and work.

“You sort of have a choice: You either embrace how unusual you are and go with it, or you try to be more usual, which I would fail at. I embrace my eccentricity.”

“Some of my own sense of being different comes from my father’s differences. He had a disability and a very obvious limp. People were always nice, but I noticed them calibrating their reactions towards him. I grew up with that sense of visibility,” he tells of his father, Alfred, who experienced much pain due to foot issues.

“I had almost no conscious choice – working in the disability field was something I just had to do,” Swartz wrote in his 2010 memoir, Able-Bodied: Scenes from a Curious Life.

It captures his childhood in then Rhodesia and South Africa, and his development as a scholar and activist on disability issues in Africa and beyond.

He often ponders the politics of inclusion and exclusion, of who gets included and who gets excluded. He worries that within the growing global consciousness of race and gender inclusion, disability issues remain on the fringes when tolerance and opportunities for so-called ‘markers of difference’ are advocated.

Diplomatically, he finds such selectivity “interesting”, as up to 15% of the world population has some sort of disability, making it the biggest single defining grouping other than gender.

“The issue of access concerns me, as does the question of full participation in society for all people, including those with disabilities.”

Understanding our common dependency

To Swartz, the autobiographical books Able-Bodied and How I Lost My Mother: A Story of Life, Caring and Dying (2020) are his most important works. He shares his thoughts on disability in the first, and those on care of the elderly and terminally ill in the latter.

Swartz wrote Able-Bodied while his mother, Elsie, was dying of lung cancer. Together with his wife, Louise, and various carers, he cared for his mother at home for almost a year.

“I’m embarrassed to say that part of how I kept going through that incredibly difficult process was by writing. By continuing to work.”

For nine years after Elsie’s passing, Swartz knew that How I Lost My Mother needed to be written. While procrastinating, he wrote more than a hundred academic papers.

He then set himself a deliberate, publicly proclaimed deadline by undertaking its writing as part of his second doctorate, this time in English creative writing at SU. He received his degree in 2020, 30 years after his first PhD.

How did the 60-plusser experience being a student again?

“The book is about care and the fact that we are all dependent. Writing it as part of a degree forced me into a position where it was clear that I was dependent, where I had to accept care from my supervisors. I was enacting the very issues that theoretically interest me in disability studies. I was forced into obviously needing and receiving care. It was fantastic.”