SOUTH AFRICA SUPPORTS GREATER REPRESENTATION OF PERSONS WITH DOWN SYNDROME AT COSP19 SIDE EVENT

By Staff Writer

• Acting Minister Sindisiwe Chikunga called for a shift from symbolic inclusion to meaningful representation of persons with Down syndrome in decision-making processes.
• The COSP19 side event highlighted the importance of self-advocates moving from participation to leadership and influence.
• “We need a shift from visibility to voice, from presence to power, and from participation to representation,” said Chikunga.

At the 19th Session of the Conference of States Parties (COSP19) to the United Nations Convention on the Rights of Persons with Disabilities (CRPD), currently underway at the United Nations Headquarters in New York, a powerful message emerged: persons with Down syndrome must not only be included in society, but must also be represented in the decisions that shape their lives and futures.
This message took centre stage during a side event hosted by Down syndrome South Africa and the African Down syndrome Network under the theme, “Nothing About Us Without Us: Self-Advocates Moving from Participation to Representation.” The engagement brought together self-advocates, disability rights organisations and stakeholders to reflect on the progress made towards inclusion and the work still required to achieve meaningful representation and leadership.

Acting Minister of Social Development, Ms Sindisiwe Chikunga, participated as a panelist in her capacity as South Africa’s Minister in the Presidency for Women, Youth and Persons with Disabilities. She used the platform to challenge governments, organisations and communities to move beyond symbolic inclusion and create meaningful opportunities for persons with Down syndrome to influence decisions that affect their lives.

“Too often they are spoken about rather than spoken with. Their lives have too often been shaped by decisions, services, institutions and assumptions made without their direct input. We must move beyond this. We need a shift from visibility to voice, from presence to power, and from participation to representation,” said Chikunga.

The Minister noted that the CRPD was developed with inclusion as a guiding principle, ensuring that persons with disabilities and their representative organisations played a meaningful role in shaping the Convention itself. Nearly two decades later, the principle of “Nothing About Us Without Us” remains as relevant as ever as member states gather at COSP19 to assess progress in advancing the rights of persons with disabilities.

While acknowledging that inclusion efforts have increasingly embraced persons with intellectual disabilities, including those with Down syndrome, Chikunga said the spirit of the Convention has not always translated into meaningful change in people’s daily lives.

She stressed that participation is fundamental to democratic societies and inclusive governance. However, she cautioned that participation alone is insufficient if decisions continue to be made by others.
“Representation means that self-advocates are not only invited into the room; they help to set the agenda, shape priorities and influence outcomes. Nothing About Us Without Us,” she said.

According to Chikunga, representation requires recognising persons with Down syndrome as individuals whose views, choices and contributions matter. She emphasised the need for accessible information, inclusive meeting spaces and appropriate support systems that enable meaningful participation and leadership.

“We need an inclusive society in which intellectual disability is not treated as a barrier to leadership, but one in which every person is respected, heard and valued,” she said.
The Minister also acknowledged that significant challenges remain. These include persistent stigma and discrimination, barriers within healthcare systems, unequal access to resources and limited employment opportunities for persons with Down syndrome.

“Twenty years later, we have come a long way, yet much more still needs to change,” she said.
Chikunga reminded delegates that persons with disabilities, including persons with Down syndrome, are rights-holders and experts in their own lived experiences. She stressed that participation should be active, meaningful and natural, rather than passive or carefully managed.

“Policies are better when they are informed by lived experience. Services are more effective when they are designed with those who use them. Communities are more inclusive when their leadership reflects the diversity of the people within them,” she said.

The Minister further emphasised that representation is not an act of charity, but a prerequisite for justice, accountability and better outcomes.
She called for greater efforts to create pathways for self-advocates to serve as leaders, board members, speakers, employees, voters, community organisers and contributors to public policy. She also urged families, governments, educators, organisations and communities to work together to create enabling environments through inclusive education, accessible communication, supported decision-making and leadership development.

The engagement challenged participants to reflect on whether persons with Down syndrome are adequately represented in organisations that serve them, meaningfully included throughout policy consultations and recognised as experts in their own lived experiences.

As discussions continue at COSP19, the message emerging from the side event is clear: inclusion must extend beyond attendance and participation. It must create opportunities for persons with Down syndrome to lead, influence decisions and help shape the future.

“Moving from participation to representation is about recognising the full humanity, agency and leadership of persons with Down syndrome. An inclusive society is not measured only by who is allowed to attend. It is measured by who is respected enough to speak, decide and help shape the future,” concluded Chikunga.