MEET THE DISABILITY-20 RESEARCHER: Dr. Erna van der Westhuizen

Research Lead Championing the Power of Lived Experience

When Dr. Erna van der Westhuizen speaks about disability rights, she draws from two decades in the trenches of social justice work and her own lived experience as a self-advocate for invisible disabilities.

As a mother to Ami and Henry, wife to Liezl, and a researcher from the South, Erna embodies the principle she champions that those most affected by policy should be the ones shaping it.

A Journey Rooted in Community

Erna’s path has been shaped by more than 20 years of working in rural communities across South Africa and the broader African continent, spanning local government, faith communities, higher education, social enterprises, and NGOs. But it was a deeply personal mission that crystallised her life’s work—ensuring that the voices of marginalised communities, particularly those of persons with disabilities and their families, are not just heard but also amplified and centred in decision-making spaces.

Currently pursuing her PhD in global health at Stellenbosch University, focusing on disability and rehabilitation, her research aims to elevate the voices of rights holders from marginalised groups.

Breaking Ground with Innovation

One of Erna’s career-defining achievements was establishing a network of parents of children with disabilities across South Africa to address the marginalisation of their voices through capacity-building, as well as building referral pathways and a policy-monitoring tool. The World Justice Forum and the Zero Project have recognised these innovations being made.

Her work was inspired by the belief that policy implementation, often intermittent, requires targeted, coordinated interventions driven by rights holders themselves.

Voice Economy: Creating Safe Spaces for Truth

More recently, Erna launched Voice Economy, a disability-empowerment startup built on a simple yet profound principle: that when people have emotionally safe and inclusive spaces to express themselves, their voices can drive real social and systemic change. Academically, she defines a voice economy as a system where the exchange of individual and collective voices creates shared value — transforming communities through advocacy, knowledge-sharing, and the dismantling of systemic barriers like ableism. In practice, Voice Economy builds digital spaces where marginalised groups can share experiences, influence decisions, and strengthen their capacity for self-representation. Grounded in Erna’s research on voice empowerment, the initiative blends technology, collaboration, and strengths-based design to ensure all voices are heard, valued, and able to shape more equitable futures.

Leading the Disability-20 Research Agenda

As Research Lead for the Disability-20, the Disability-20 engagement group launched during Brazil’s 2024 G20 presidency, Erna is at the forefront of a historic movement. The Disability-20 initiative seeks to continue the momentum established in Brazil and integrate disability inclusion into the core of the 2025 G20 agenda.

Working alongside the National Council of and for Persons with Disabilities (NCPD), Erna guides a skilled team in crafting evidence-based submissions that reflect both rigorous research and lived experience. The team has already submitted two rounds of contributions to the G20 process, with engagement sessions continuing to energise advocates across South Africa and beyond.

Getting involved in the Disability-20 process was a natural step for Erna. Elevating the voices of persons with disabilities is at the core of her work, and she found the NCPD’s ethics and leadership to be both visionary and deeply inclusive.

Why Platforms Like Disability-20 Matter

For too long, barriers such as inaccessibility, limited resources, and the absence of formalised inclusion mechanisms have prevented persons with disabilities from engaging in global governance processes that directly affect their lives. The Disability-20 is changing that paradigm.

Aligned with South Africa’s G20 presidency theme of Solidarity, Equality and Sustainability, the Disability-20’s goals include producing, disseminating, and publishing position papers and recommendations for inclusion in G20 policy packs, including submissions to the C20 and other engagement groups.

The strategic objectives are ambitious: embedding disability inclusion within G20 policy frameworks, building a robust global network of Disabled Persons Organisations, and institutionalising the Disability-20 as a recognised G20 Engagement Group.  The NCPD’s workstream areas include inclusive education, employment and economic participation, accessible tourism, digital and inclusive economies, and poverty alleviation and food sustainability.

This is not about token representation; it is about structural transformation.

A Message of Hope and Urgency

What sets Erna apart is her unwavering belief that inclusion is possible and that power, despite many barriers, sits with the marginalised of the world. She believes that when diversity is embraced and inclusion is genuinely practised, remarkable things happen.  Her family gives her the strength to do this demanding work, journeying through life, embracing diversity, and enjoying every moment.

As Research Lead, Erna guides the team in shaping submissions, ensuring they reflect both evidence and lived experience. Leading such a skilled and committed team has been a joy for her. She remains hopeful that the submissions will be well-received and invite essential conversations. The time is here, she believes, to invite C20 and G20 to listen, co-create, and co-lead.

Through her work with the Disability-20, Erna van der Westhuizen is not just documenting the experiences of persons with disabilities; she’s reshaping the very systems that have long excluded them. She’s helping to ensure that solidarity, equality, and sustainability are not just aspirational themes but lived realities for all.

Because in Erna’s world, inclusion isn’t a favour to be granted. It is a right to be claimed, and she is helping to ensure that claim is heard at the highest levels of global governance.