Liver transplant to PhD: Champion of sport for ‘ordinary’ people with disabilities

Topflight athletes with disabilities and elite parasports events are generally well supported nationally and internationally. But what of “ordinary” people with disabilities keen to participate in non-competitive sport? The question generated an eight-year PhD journey and a personal metamorphosis for University of Cape Town (UCT) doctoral graduand Dominique Brand. She confronted limiting attitudes, shed 40 kg and came to terms with her own ‘medicalisation’ as a liver transplantee at the age of 10.

It was at a conference several years ago that Dominique heard clinical psychologist Dr Brian Watermeyer speak about his experiences as a blind runner. Dr Watermeyer is a lecturer on the Postgraduate Diploma in Disability Studies programme in the Department of Health and Rehabilitation Studies in the Faculty of Health Sciences.

Dominique’s interest was piqued. How did he manage without support or the assistance of a sports organisation? The question later formed the backbone of her PhD research. And Watermeyer became her PhD supervisor, along with co-supervisor, Professor Leslie Swartz.

Elusive and inaccessible

Census data shows that 15% of the world’s population, or one billion people, lives with disabilities. The prevalence is higher in developing countries. South Africa’s 2011 census shows that 7.5% of the national population lives with a disability, which affects more women than men (8.3% and 6.5% respectively). More than half (53.2%) of people older than 85 report having a disability.

While sport is encouraged as a social binding agent, important for heterogeneous countries like South Africa, for people with disabilities, particularly those stuck in the poverty cycle, sport remains elusive – inaccessible in process and practice. If they do participate it’s often within a disablist environment, limiting their opportunities to acquire social skills, develop independence and become agents of change, said Dominique.

Her PhD study deliberately excluded sports bodies or clubs or the governing bodies that regulate sport in recreational spaces. To understand the extent of the barriers they face in getting out and active, she wanted to hear directly from those affected.

Instead, Dominique explored the experiences of an intersectional sample group of 10 people with disabilities. They were participating in sport, had participated in sport or were keen to participate again. Recruited from the larger Cape Town metropole, the participants all shared an interest in sport – from adaptive surfing and wheelchair rugby, to training and trail running, and its value to their lives.

The power of narrative

She used a qualitative methodology called purposive and snowball sampling, which involves biographical narrative interpretation. She put one overarching question to each member of the group: How has sport participation influenced their lives and how has their participation or exclusion to participation guided their growth and identity development?

“Often fear stops us from talking about disability, support needs or barriers.”

Each narrative exposed their individual material and non-material barriers to participation. While resources such as money, transport and a supportive system can alleviate the material barriers, the non-material barriers, or the psycho-emotional costs of sport participation, can be more elusive, said Dominique.

“Often fear stops us from talking about disability, support needs or barriers,” she added. “Very simply, my research brought that to the foreground: that to become inclusive with intent we need to listen to people’s stories. The concept of participation can only truly be understood through exploring the experiences of diverse, heterogenous groups.”

No quick fix

These deeply individualised experiences mean that there is no quick fix or one solution that suits all the way of becoming inclusive and creating a culture of inclusion, she said.

As a result, Dominique developed a participation framework that identified a pattern of six types of participation.

“It offers a language to expand our discussion about participation and about the meaning created by the layered experiences.”

“What the disability framework highlighted is that when people with disabilities do manage to participate in sport, they do so mostly within a disablist environment. In a non-disablist environment, it’s hard for them to gain the same levels of access as those without disability.”

This framework is an important starting point, Dominique said.

“It offers a language to expand our discussion about participation and about the meaning created by the layered experiences of people with disabilities.”

Her PhD study also contributes to knowledge from the Global South, supporting and endorsing the work of other Global South researchers in disability and sport. And, through it, an urgent call to global role players within sport and development “to take responsibility for their role in perpetuating exclusionary processes”.

Dominique sees this as a first step towards a conversation about the issue and a collective agenda to forge a more inclusive, transformed society. In this, her doctoral study underscores UCT’s Vision 2030.

Personal journey

In many ways the eight-year PhD has been a 360-degree mind and body journey for the researcher. Brand studied part time while working at her co-owned development, research and monitoring and evaluation consultancy, BFM & Associates.

It’s telling that before starting the PhD, she embarked on a journey of reflection and introspection to explore her own limited and limiting perceptions. That yielded a personal transformation that was wide-ranging.

“All the parts of me that influenced my thinking had to be unpacked.”

“We come from such different paradigms when we enter disability studies. For this research I wanted to avoid any bias that might remove me from a deeper understanding of how people with disabilities access participation.”

There was also her background to consider.

“The discovery of critical disability theory and engaging with decolonisation and inclusion of African knowledge systems created an urgency for me to peel back the layers of my biases and belief systems, my privileges and socio-economic, political, cultural and religious background,” she added.

“All the parts of me that influenced my thinking had to be unpacked. I had to reflect on myself and what had made and influenced me to that point. I could not honestly engage in my research work before I had done this.”

Overlapping similarities

A compelling influence was her experience as a young liver transplantee in 1993. She was born with Alpha-1 antitrypsin deficiency, and at the age of four started a long relationship with the transplant teams at the Red Cross War Memorial Children’s Hospital and later Groote Schuur Hospital.

At the age of 10, Dominique received a new liver from a 21-year-old donor. The paediatric surgeons wanted to wait until she was more physically mature.

“And probably knowing that the immunosuppression regime I would be put on after the transplant would influence my life in different ways,” she said.

Twenty-nine years later, she still attends the liver clinic at Groote Schuur Hospital four times a year. There she is under the care of UCT’s Professor Wendy Spearman, part of the UCT transplant team in 1993.

These are “her people”, and she has high praise for their expertise and subsequent care. They changed her life, gave her life.

Although a transplantee, Dominique does not regard herself as disabled. But it was easy to identify with her PhD interviewees, she said.

“I was surprised by the overlapping similarities.”

At school in Vredendal, where her family have farmed for many years, she was not allowed to participate in sport although she loved playing tennis (an old newspaper cutting shows a beaming young Dominique in tennis whites bunched up with her teammates) and did group activities such as summer athletics.

“I had very little talent for any specific sport but being able to participate made me feel ‘normal’,” she said. “We all crave that feeling of being able to step into spaces without the ‘special’ support of others, being able to access participation spaces on our own steam and feeling a sense of self-accomplishment and participation – and sometimes even competition.”

She also understands how any form of illness or disability affects families and demands sacrifices and adjustments.

“I was living and dealing with the now: how I was feeling. But the family around me had to deal with so much more.”

Transformation and growth

This awareness changed her.

She underwent a physical transformation during the PhD process. As a transplant recipient, she had felt ‘owned’ by the medical fraternity and felt dissociated from her body.

“I didn’t take care of myself.”

“You can’t control things; it’s about submitting to the journey.”

She started a keto (ketogenic) diet, began exercising and lost 40 kg. Gym is now an essential part of her routine. There is joy and a sense of accomplishment in stretching herself physically.

Dominique believes that hers is a small part in a bigger story: that of her family and those who supported her; the Red Cross and Groote Schuur teams who gave her life, the team at Disability Studies and other colleagues at UCT – and adding vital research in an understudied area and impetus to a creating a fair and just society.