“Be my microphone, not my voice”- reflections from a Down Syndrome Imbizo

On World Down Syndrome Day, we are reflecting on the continued disparities faced by people with Down syndrome. Racial disparities exist too, with Black people with Down syndrome dying younger than white people with Down syndrome in the U.S., and there are additional health inequities for people with Down syndrome living in low- and middle income countries.?

To begin to address these issues, we facilitated an Imbizo (gathering) last year, bringing together key stakeholders from the Down syndrome community in South Africa. This Imbizo served as a platform for fostering dialogue and sharing insights.

The event was organised by Atlantic Fellow for Equity in Brain Health, Eimear McGlinchey and regional mentor at the Global Brain Health Institute, Juan Fortea; and the Atlantic Fellows for Health Equity in South Africa, Atholl Kleinhans, Bulela Vava and Yvette Andrews. This gathering was supported by an Ideate Grant from the Atlantic Institute.?

Shéri Brynard shared her lived experience of growing up with Down syndrome in South Africa where without any special assistance, she faced prejudice and superstitious beliefs surrounding disability. Despite the absence of accommodation, she became the only person with Down syndrome in South Africa to attain a tertiary teacher’s diploma, without any amendments or concessions being made to the course.

Amplifying lived experience and collective voices

The Imbizo underscored several key themes. Participants emphasized the importance of recognizing and leveraging the strengths within the Down syndrome community, advocating a collective approach? and addressing the challenges faced by isolated individuals and families. We encouraged greater levels of collaboration for a more impactful outcome.

The discussion also touched on the need for a forward-looking perspective: Luan Swanepoel spoke about the need to look towards the future and stressed the need to speak directly with people like him with Down syndrome. Shéri supported the need to amplify the voices of people with Down syndrome by asking us to “be my microphone, not my voice”.

More data and gender equity crucial for policy change

Communication challenges with the South African government and governments internationally were acknowledged, particularly the time-consuming process of overcoming existing preconceptions about intellectual disabilities. Proposals were made for educational initiatives and centralized resources to easily share information within the community. Concerns were raised about barriers to employment for individuals with disabilities, leading to a discussion on existing employment quotas. The meeting also explored the current limited governmental involvement with parents, especially regarding the lack of support for the extra educational costs for specialized schools.?

Data generation emerged as a crucial theme for policy change and we recognized that meaningful data could clearly illustrate community needs. We also examined gender roles, noting that responses to inequities often fall on the women but that women are not properly represented at decision-making levels. Finally, the discussion delved into the fragmentation of services and the need for more joined up? alignment.?

The meeting underscored the importance of collaboration, advocacy, data-driven approaches and community empowerment to effectively address the challenges faced by individuals with Down syndrome in South Africa, and was incredibly useful for those of us coming from elsewhere in the world.

Next Steps

As well as having many aspirational wishes for the future we identified a number of tasks that were actionable and could make a huge difference in people’s lives. We hope other Down syndrome collectives and communities around the world find these useful and applicable?

• Use collective voices: Commit to using voices, whether through political channels or social media, to raise awareness and advocate for the rights and needs of individuals with Down syndrome.
• Plan more inclusive gatherings and engage directly with people with intellectual disabilities: Actively involve individuals with intellectual disabilities in decision-making processes, beyond? having their presence at events. Provide training programs to enhance their participation and contributions. Ensure that information dissemination prioritizes reaching individuals with intellectual disabilities, recognising their importance in decision-making processes.
• Importance of support people: Emphasize the significance of support? staff and volunteers for individuals with Down syndrome and advocate for their inclusion in various contexts.
• Involve multiple government departments in future gatherings: Extend efforts beyond the Department of Health and involve multiple government departments in addressing the diverse needs of individuals with Down syndrome.
• Prioritise data collection and sharing: Make data collection a priority, emphasising its role in advocating for policy changes and illustrating the needs of the community. Promote the sharing of data among stakeholders to enhance collective understanding and inform evidence-based decision-making.
• Advocacy training: Promote consistency and commitment in advocacy efforts. Provide training to empower individuals to become their own advocates and to campaign for better services and policy changes.
• Build a database of employers: Establish a comprehensive database of employers who actively employ individuals with intellectual disabilities, and showcase successful examples.
• Include indigenous knowledge: Acknowledge and incorporate indigenous knowledge systems and traditional healers in discussions and initiatives related to Down syndrome.