People with disability make up the world’s largest minority group yet there is little research globally on how disability is included in the undergraduate curriculum for medical doctors. Inspirational PhD graduand Sarah Whitehead, a medical doctor herself, set out to change that with an important academic contribution; a proposal to show how this can be achieved.
Sarah will graduate with a PhD in Health Sciences Education through the Department of Health and Rehabilitation Sciences in the Faculty of Health Sciences at the University of Cape Town (UCT) on 21 July.
She will be among 104 PhDs who will be capped at the mid-year ceremony in the Sarah Baartman Hall, and one of 36 PhDs from the Faculty of Health Sciences, where she completed her MBChB.
Her thesis title is “Proposing clinician competency guidelines for the inclusion of disability in the undergraduate medical curriculum of South Africa – an exploratory study”.
Sarah’s mixed-method, sequential study was conducted in two phases and yielded a final set of 13 disability-specific competencies and nine sub-competencies. These have been clustered into knowledge, attitude and skills competencies that should be included in the South African undergraduate medical curriculum.
“My research does not prescribe what must be done; it proposes a steppingstone.”
“The intention is to add – in the healthcare domain – to the growing call for greater inclusivity in the healthcare domain,” said Sarah.
“My research does not prescribe what must be done; it proposes a steppingstone which could be helpful in ensuring that people with disabilities receive quality healthcare. Most importantly, my research explains why the competencies I propose are important.”
The realities of disability are close to her heart. Sarah was diagnosed with a developmental venous anomaly (DVA) in her brainstem in her final year of medicine. DVAs are malformations of venous architecture and are asymptomatic in most cases. Sarah’s DVA has a tight stenosis, which has led to mobility, balance issues and various other challenges to her motor system.
Forks in the road
Hers wasn’t a direct road to medicine. Fresh from school, Sarah registered for a BSc in occupational therapy (OT) at UCT. But after being engrossed by lecturer Dr Chris Wharton’s inspirational and “amazing anatomy lectures”, Sarah changed tack.
“I got one of the last three spots in medicine, a month into the second year of OT.”
After completing her MBChB and community service, Sarah worked exclusively in physical rehabilitation medicine. She loved the field, and it strongly influenced her decision to tackle a disability studies/health education postgraduate qualification.
“They are not sick. They are different. And their disability is a small part of who they are.”
The principles of inclusivity and diversity are crucial to sensitising young medical trainees, she said.
“My research highlights the important role the attitude (non-verbal and verbal) of a medical doctor towards a people with disabilities can have in influencing the quality of the interaction between them. It is critical that medical students understand and are made aware of this from early on in their degree.”
She added, “This research reminds anyone who reads it that disability is simply part of humanity’s diversity, which should be valued and respected. It’s an important steppingstone towards greater inclusivity.”
Her decision to add to her credentials as a physical rehabilitation doctor was shaped by her experiences of the undergraduate medical curriculum at UCT, her clinical experience in the field itself – and her personal experiences as a patient and person with disability.
But here she was stymied.
“South Africa doesn’t recognise physical rehabilitation medicine so one can’t specialise in it, as one would in internal medicine or psychiatry.”
She opted instead for a Postgraduate Diploma in Disability Studies from UCT.
Events took several other serendipitous turns.
With onerous clinical commitments, Sarah deferred the start of the postgraduate diploma by a year. In that time, her co-supervisors Professor Harsha Kathard and Professor Theresa Lorenzo (who were also her PhD supervisors) read Sarah’s 2014 book about her experiences as a medical doctor with a disability.
They recommended that she opt for a master’s degree in disability studies instead.
“But three years into the master’s degree, my supervisors felt that to really do justice to the rich data I had gathered, I should upgrade to a PhD. So here I am, about to graduate with a PhD!”
Her study also has important implications for the future of medical training in terms of human and health development in Africa.
“I did my undergraduate medical degree at a South African university but using a Eurocentric curriculum. My research gave me the opportunity through the lens of decoloniality (of medicine and disability) to produce a more Afrocentric body of knowledge for potential inclusion in a more Afrocentric undergraduate medical curriculum.”
“My research looks at how to bridge the gaps between policy and practice.”
In terms of equity, Sarah’s research addresses the disparity between health policy and practice in South Africa.
“We have these lovely policies that state, for example, that people with disabilities should receive quality healthcare, equal to that received by able-bodied people. But very few [in the healthcare arena] know how to achieve this. My research looks at how to bridge the gaps between policy and practice.”
In tandem with her academic advancement, Sarah’s career has come full circle too. After a stint working at a private hospital, she made a bold choice and co-founded a non-profit company (NPC), Zimele (Xhosa for independence), in 2020. “Yes, during my PhD, which is not something I would recommend,” she said. Zimele provides comprehensive prosthetic rehabilitation to amputees from disadvantaged communities.
It challenges her on multiple levels.
“My job involves a bit of everything: doctor, fundraiser, finance manager, engaging with other non-profits to form partnerships – and plenty more. While it’s ultimately very rewarding work, being the executive director of a startup non-profit is definitely not glamorous or easy!”
But for the many individuals who have been assisted, Zimele has been truly life changing.
Graduation will be a special occasion in her broader circle. Sarah’s neurosurgeon, Associate Professor Allan Taylor, will attend. He has been integral to her journey, said Sarah, a staunch supporter and champion.
There is a family lunch planned for after the ceremony and an evening gathering for family and friends.
As for the future, there is a growing NPC to take care of.
“Zimele is my baby, so I intend to continue playing a big role in its growth. Both my NPC and PhD place me in a good position to continue my disability advocacy work.”
Her final word concerns the exclusionary effects of limiting people with disabilities.
“Don’t make assumptions about a person with a disability based on their appearance, and don’t label them because of their disability. If you do, you are limiting their humanity and potentially limiting yourself too. I say this because if you ask rather than assume, you might well be surprised by what interesting things you can learn.”
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