A call for action on Down Syndrome Awareness Day – The Mail & Guardian

We should strive for a more inclusive education system. Photo: Madelene Cronjé

On World Down Syndrome Awareness Day, which is observed annually on 21 March, we gather to celebrate the unique contributions and abilities of individuals with Down syndrome. 

This global awareness day, officially recognised by the United Nations since 2012, aims to enhance understanding and support for those with Down syndrome. The date, 21 March, was chosen to symbolise the trisomy of the 21st chromosome, which is the genetic cause of Down syndrome.

The theme for 2025 is a call for action, asking all governments to improve the support systems for those with Down syndrome recognising the unique needs of all. We are privileged in this country that we advocate for inclusive education. We are reminded time and time again that inclusive education has the innate potential to transform the lives of those with Down syndrome. We argue that inclusive education is not just a moral imperative, but it has legal and ethical obligations. Of course, we are aware that this does not always translate into practicalities. This is the space in which we need to ensure that we advocate and become changemakers. While today can be a time for reflection, it is also a time for action. 

Francis Bacon’s words: “We rise to great heights by a winding staircase of small steps”, gives us hope that every step taken to build more inclusive societies is part of a journey. A recent paper published in January 2025 about raising awareness and addressing inequities for people with Down syndrome in South Africa by Eimear McGlinchey et al discusses the challenges faced by individuals with Down syndrome in South Africa, highlighting significant health and social inequities. Down syndrome has a higher birth prevalence in low- and middle-income countries, with South Africa experiencing rates of two to three per 1,000 live births. 

But survival rates remain low because of delayed diagnoses and limited access to healthcare, with only about a third of children with Down syndrome surviving beyond the age of two. The authors argue for a dedicated Down syndrome research network, improved advocacy, inclusive education and stronger coordination among healthcare providers. They also stress the importance of integrating traditional healers into the healthcare system and promoting collective action to address these disparities. An imbizo gathering in South Africa brought stakeholders together to identify key areas of inequity and propose actionable steps, including enhanced advocacy, data collection, and networking. 

As a father of a young son with Down syndrome, it was heartening to read this critical paper as it significantly advances our knowledge about Down syndrome in South Africa. The Constitution stands as a beacon to the world and enshrines the right to education for everyone. Our role and that of society is to make possible that which often happens in times of shrinking resources, fiscal constraints and the vagaries of policy implementation. It is not negotiable and as elusive as it may be, we need to be on the quest for inclusive education that encompasses all learners. 

We often erroneously view this as just a call for financial inclusion, but this call is much broader. Sandra Liebenberg, for example, highlights that basic education serves as the foundation for all future learning and influences an individual’s ability to secure employment. Adopting this as a central tenet requires us to provide an education system that supports the full personal development of each learner, ensuring they can pursue their learning potential to the fullest. It is necessary to call for vigilance and action as despite these legal frameworks, many children with Down syndrome still face barriers to accessing mainstream education. The sad and stark reality in South Africa is that the implementation of inclusive education policies is fraught with difficulties. 

As the department of education notes, schools intended to bridge the gap in inclusive education are not functioning at optimal capacity because of insufficient funding and lack of standardised post-provisioning norms. This situation is despite us having adopted principles of equitable and equal access for all. The White Paper on Special Needs Education advocates for a single inclusive education system which aspires to transform the education system through initiatives like full-service schools, special schools as resource centres, and district-based support teams. Yet, systemic issues persist, with many children being referred to special schools even when they could be accommodated in mainstream settings with reasonable accommodations.

Chelsea Wallis argues, on the other hand, that although inclusivity is an admirable objective, its framing in international frameworks like the Convention on the Rights of Persons with Disabilities (CRPD) can be overly rigid, potentially disadvantaging neurodivergent learners by failing to provide specialised support systems suited to their unique needs. Mainstream educational settings often lack the resources and flexibility required to accommodate neurodiverse students effectively. While inclusivity is optimal, it is required that for the provision of access with success, we ensure that schools are provided with the required infrastructure and resources to accommodate the move to inclusivity. 

It is clear that the way to subvert these barriers is a holistic approach, which acknowledges, recognises and adapts to the diversity of learning needs and has the required systems to scaffold support. The Screening, Identification, Assessment, and Support (SIAS) policy is a step in this direction, with the express aim to establish a standardised framework for identifying and addressing barriers to learning.But its effective implementation requires consistent resource allocation and teacher training, which remain significant challenges. I do believe that a concerted effort to give life to policies and various instruments that are in place is required. My question is if not now, then when? 

While I have focused on education, we must remember that there is a greater agenda here: we need social inclusivity in workplaces, in society and access to all opportunities available. Mbazima Simeon Mathebane argues: “The cultural principles of ubuntu and collectivism in black African communities provide potential support structures that could be harnessed to improve care and reduce stigma.” Each year we will continue to gather to celebrate individuals with Down syndrome, but it must also be accompanied by a resounding call to action. There has been a long tradition of commemorating this day with wild and whacky socks, different socks and mismatched socks. 

The socks definitively remind us that we must stand together for inclusivity and collectively advocate for inclusive education and equal opportunities for all. As we strive for a more inclusive education system, let us remember that education is not just a right but a reality that must be accessible to everyone. It is so essential that we learn that inclusion also means not making decisions on behalf of others. Inclusion means that everyone has the right to be at the table. We have the responsibility to make this happen. Let us work together to create a world where every child or person, regardless of their abilities, can learn, grow and contribute. 

Letlhokwa George Mpedi is a professor of law and the vice-chancellor and principal of the University of Johannesburg.