“In South Africa and in the community where I live, I have never seen a person with Down syndrome who was able to integrate into society,” said Atholl Kleinhans on attending Creative Brain Week. As an Atlantic Fellow for Health Equity in South Africa, Atholl was one of 16 Atlantic Fellows, drawn from six Atlantic Fellows programs and 10 countries, who, with the support of the Atlantic Institute, attended a week-long event in Dublin showing how creativity and brain science collide.
Creative Brain Week in 2023, hosted by the Global Brain Health Institute (GBHI) at Trinity College Dublin, featured a session that highlighted brain health in individuals with Down syndrome. Atholl found it particularly moving; it tapped into his interest in health equity and how to improve the experience of marginalized populations attempting to access health care systems. As well as changing his perspective, Creative Brain Week led to a fruitful collaboration with Eimear McGlinchey, an Atlantic Fellow for Equity in Brain Health, now also faculty at GBHI as an assistant professor specializing in intellectual disability at Trinity College Dublin.
Their meeting catalyzed a collaborative process that started with them jointly conducting a community-based project aimed at raising awareness of Down syndrome in South Africa. Their project findings have since been published in peer-reviewed journals and presented at various international conferences. Their community event, known as an imbizo, was a traditional gathering deeply rooted in the cultural practices of Nguni-speaking communities in Southern Africa. The imbizo offers a space for open dialogue, collective decision-making and inclusive consultation, as diverse stakeholders come together to address pressing issues. To stage the imbizo, they also involved two other Atlantic Fellows for Health Equity in South Africa, Yvette Andrews and Bulela Vava, as well as a regional mentor at GBHI, Juan Fortea, and were supported with Atlantic Institute funding.
At the imbizo in Johannesburg, in November 2023, individuals with Down syndrome, their families, health care providers, policymakers, the business sector and community members shared their perspectives. A self-advocate with Down syndrome, Shéri Brynard, spoke about her experience, emphasizing the importance of inclusive education and her active role in Alzheimer’s research within the Down syndrome community.
The imbizo, facilitated by Kirti Ranchod, Atlantic Fellow for Equity in Brain Health and chair of the Africa Brain Health Network, highlighted themes around advocacy and awareness. It underlined how it was essential to combat the stigma experienced by many families, empowering them to gain better access to health care and education. Also, that people with Down syndrome should be more included in the decision-making and that the role of Indigenous knowledge acknowledged for forming culturally sensitive solutions. Participants agreed there was a need for a research network for gathering data to provide evidence-based policies and decisions about resource allocation. They also concluded that links should be forged across government, the private sector and NGOs to bridge gaps in education, employment and health care access for people with Down syndrome
Atholl, Yvette, Bulela and Eimear’s recommendations have been disseminated through published research papers and international conferences. One of these papers, and the broader project, was recognized by the vice-chancellor of the University of Johannesburg as a “critical paper” and featured in The Mail & Guardian, one of South Africa’s most respected medical newspapers.
Collaborators on this project, including Eimear, Atholl, Kirti and Juan, have since spearheaded another project, FUNDISA – Framework for Understanding Neurocognitive Disorders via Indigenous Systems in South Africa, working with stakeholders and local communities. With the support of a team of other collaborators, they have secured funding from the Alzheimer’s Association for a project to establish a common lexicon by bringing together African traditional and Indigenous health systems with Western medical practices.
Eimear said, “For those of us coming from outside the region, it was an extraordinary learning experience. I gained so much from hearing the diverse perspectives in South Africa — a context that is so different from what I am used to in Ireland.”
As part of the collaborative grant, Atholl, Eimear and Bulela have also developed a research project, Challenges and Barriers to Care and Access for People with Down Syndrome and Caregivers in South Africa: A Survey-Based Analysis. The results of this national survey will help lobby those responsible for the country’s primary health care policy.
“The inequalities are stark,” said Atholl. “It is deeply unfair that children with Down syndrome in Africa are often seen as a source of shame to their families and communities. We must find ways to close these gaps in care and instead celebrate their lives. They deserve love and the best support we can provide.”
Research papers co-authored by Eimear McGlinchey, Atholl Kleinhans, Kirti Ranchod, Bulela Vava and Yvette Andrews, with others (including other Atlantic Fellows), include:
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