Building networks of support for people with disabilities

Erna van der Westhuizen is an Atlantic Fellow for Health Equity in South Africa. She works to strengthen and design ecosystems for (disability) inclusion through designing, managing and communicating social impact.

The development of liveable and lovable places is not an accident – rather, it is the result of careful planning and collaboration with the people who will use and inhabit them. Through a commitment to social cohesion, the social fabric is repaired by addressing the causes and effects of social disintegration, creating an environment where people can develop their capabilities, live together in peace and feel a sense of belonging and ownership.

Through working with groups, chiefly the parents of children with disabilities, I have discovered that building networks of support is crucial to giving confidence to marginalized groups. For instance, in the case of parents of children with disabilities, decades of power have isolated them and silenced their voices. Breaking this isolation is critical. Starting the Parent Network is a key example of this as the parent network now connects nearly 2, 000 parents from across South Africa, an example of what can happen when groups decide to stand in solidarity and build a network. You can see more about the parent network here .

Another insight is to share quality information as otherwise knowledge stays in pockets of society, leaving parents vulnerable to the opinions of others, which is disabling in itself. To build social cohesion, it is important to ask for the opinion and input of these communities on what they need. Our work must consciously favor inclusion and participation, as each deliberate step enables groups to step up. At the same time, we need to lift the voices of the professionals who want to share their knowledge more widely.

Additionally, we should make policy engagement user-friendly to build back confidence. In my work designing the “Let’s Talk Parents” tool, we have witnessed the power when ordinary people have the opportunity to call the government to account through tools and innovations that are user-friendly and supportive. This in itself enables participation. Parents of children with disabilities now have the opportunity to raise their voices in the country-level reports to the United Nations as you see here .?

It is our task to deeply understand the societal and environmental barriers that persons with disabilities experience despite comprehensive and intricate legislative frameworks. Even when measures are put in place to address these barriers, there is often a disconnect between services designed to tackle these issues and the reality, resulting in social disenfranchisement. One reason for this is the historical promotion of the medical model of disability, which encourages a patriarchal authority and so-called expert professionals having control over the lives of persons with disabilities. Such professionals are perceived as being more educated, engendering respect and having influence with greater control over access to resources. This can reinforce class systems and unequal societal power relations that we need to overcome.

This is not just the case with disability: the same goes for any other marginalized groups. Social cohesion calls for action that addresses barriers by intentionally creating spaces that address the root causes of social disintegration, understanding that this doesn’t happen in siloes of marginalized groups. Again, this work is intentional. Let’s inspire and support each other to journey together. What can you do to make your work and personal spaces inclusive by encouraging participation towards social cohesion?