Michael Maliele: Raising Awareness for Epilepsy and Inclusion

Activate Change Drivers continues to bring disability and inclusion into the limelight through the A! Diversity campaign. This year, the campaign aims to enhance understanding and acceptance of neurological disorders, promote inclusive mental health practices, and advocate for systemic changes that ensure equal participation for people with disabilities. The campaign aligns with World Mental Health Awareness Month (WMHA), highlighting how neurological disorders influence emotional well-being and the broader experience of inclusion.

Walking us through his lived life, we introduce you to Michael Maliele, advocate, award-winning author, and community leader with epilepsy. Michael’s is a story of purpose in a world that might otherwise be in a state of hopelessness – and yet, from his story, we discover that this is where a life of purpose usually begins.

Navigating life post-diagnosis

“Being diagnosed with epilepsy at seventeen changed everything,” he asserts. “It was not an easy path, but it provided focus.” Public education, advocacy, and mentorship have been fuelled by that mission – and by a steadfast conviction that to lead is to love. “As a king,” he explains, “you are a nation’s father. You must do something for your people, whether they are healthy or handicapped.”

Maliele’s journey shows a deep devotion to service, shaped by lived experience and a sense of duty to others. He serves as a board member of Epilepsy South Africa, contributing to the organisation that supports people living with epilepsy across the Free State and North West. As an IGAP Champion and coordinator, part of the World Health Organization’s Intersectoral Global Action Plan for Epilepsy and Neurological Disorders, he continues to raise awareness and build inclusion across communities.

His advocacy began with a campaign on autism and ADHD, aimed at helping teachers and parents understand behaviours often mistaken for disobedience. “It was a campaign of autism and ADHD to make people aware,” he explains, “because many don’t know what autism is or how to see a person with autism, especially a child diagnosed with ADHD.”

That work opened a pathway into broader disability inclusion – a cause Maliele says is inseparable from his identity. “I am a king – that’s who I am before everything,” he says. “Being a king is not about enforcing authority. It’s about taking care of your people, whether healthy or disabled. As a father of the nation, you must be there for your children.”

Living with epilepsy since the age of seventeen, Maliele speaks openly about the challenges that shaped his advocacy. “It was not an easy part of my life,” he says, “but that’s the reason I started to advocate for epilepsy and disability inclusion.” He adds, “Epilepsy affects more than the body; it affects your mind, your confidence, and how people treat you.”

He also points out that epilepsy was once excluded from disability frameworks altogether. “People saw it as something else, not a disability,” he says. “But when you look at the research, you see that it changes your life, and there’s still no cure.” His goal is to shift that perception. “People see the seizures but not the person,” he says, describing his work to help others see epilepsy as part of the human story.

Carrying the Work Forward

Maliele’s advocacy often runs on personal effort. He travels between communities, schools, and health facilities, sometimes at his own expense, to educate and empower. Rooted in the spirit of Ubuntu, he believes his work is about service to humanity: ensuring that people with disabilities are seen, heard, and supported.

His dedication extends beyond advocacy into writing. “I wrote a book talking about my journey with epilepsy,” he says, “how I managed to survive and live after being diagnosed.” That book formed part of a growing body of motivational work that later earned him the African Authors Award in 2021.

“The work does not stop,” Maliele says. “It continues in every act that makes space for another person to belong.” In those words lies the heart of the A! Diversity campaign – a call to raise awareness, unlearn exclusion, and insist on dignity as daily practice. Inclusion, he believes, is built through small, deliberate acts that honour difference and reaffirm our shared humanity.

——————————

About the author:

Aphelele Mtwecu is a content writer, activist, and creative force passionate about youth development, transformation, and social impact. She is deeply committed to advocating for mental health and working to remove the stigma around mental health. She is also committed to creating more safe spaces for young people to engage. As a 2016 Activator and member of the ACTIVATE! Change Drivers writer’s hub, Aphelele, uses her writing to inspire and advocate for positive change.