By Simon Manda
Autism self-advocates from throughout Africa shared their personal narratives and experiences for the first time in the history of the United Nations Conference of States Parties (COSP) to the Convention on the Rights of Persons with Disabilities, marking a historic occasion for disability rights and representation.
On June 12, 2024, Dr. Emile Gouws conducted a live Zoom programme that was ground-breaking and featured underrepresented groups on the Commonwealth Disabled People’s Forum. This event was a part of COSP17.
The programme, “Listening to the voices of autism self-advocates in the Global South: Ubuntu,’stories from Africa,'” included a varied range of speakers from several African countries, providing hitherto unheard-of insights into the struggles and lifestyles of people with autism on the continent.
The South African National Anthem was sung to begin the programme, fostering a sense of pride and unanimity. After extending a warm welcome to everyone, Dr. Gouws was joined by Richard Rieser, General Secretary of the Commonwealth Disabled Peoples Forum, who spoke briefly and emphasised the historic nature of the event.
In order to provide an academic viewpoint on the significance of lived experiences in developing understanding and support for autistic individuals, Professor Stephan Shore of Adelphi University emphasised the significance of research carried out by autism self-advocates.
African autism self-advocates gave stirring talks at the centre of the event. Both non-speaking autistic self-advocates from South Africa, Stephanie Pringle and Zekwande Mathenjwa of the Zekwande Foundation, challenged stereotypes and emphasised the diversity within the autism community with their distinct viewpoints.
The geographical representation was further enhanced by Carmen Nangolo from Namibia and Sarah Bosibori from Kenya, who provided perspectives on the lives of autistic people in their own nations. The convergence of several impairments was brought to light by Kelebohile Mavuso, who represented both Intellectual Disability and Autism Lesotho and the National Association of the Deaf Lesotho.
The CEO of Tech Hub Holdings Ltd. and the creator of Andy Speaks 4 Special Needs Persons Africa, Dr Sylvia Mochabo Akinsiku, also spoke at the event and shared her knowledge of technology and disability inclusion.
Arya Chitra, the head of Dubai’s Nikon Youth & Kids School, offered a global viewpoint on autistic education and the various projects they are involved with in Tanzania, Kenya, and Zambia .
“Sam the Hedgehog video and goodwill practices,” a portion that showcased creative approaches to autism acceptance and understanding, was particularly noteworthy.
Zain Bulbulia, Acting Chief Director of Transformation in the Office of the Premier, Gauteng, South Africa, gave closing remarks to the programme, reiterating the government’s support of disability inclusion and rights.
Gouws explained the groundbreaking innovation, SAMMI (Smart Access Menu Management Interface) as a technological advancement whose main purpose is to advance the rights of individuals with psychosocial, invisible, sensory, and hearing impairments. The innovation focuses on promoting access to information, improving accessibility in various environments, supporting independent living, fostering inclusion, enhancing communication, and preserving personal choice.
The initiative aims to implement reasonable accommodations in restaurants, public facilities, and other spaces, starting in South Africa and expanding throughout Africa, with the ultimate goal of global implementation. SAMMI emphasises educating society to become more inclusive and accessible, thereby creating a more supportive environment for individuals with diverse needs.
Importantly, SAMMI recognises the personal autonomy of individuals, noting that it remains a personal choice whether to accommodate someone with invisible impairments. This approach respects the dignity and self-determination of those with disabilities while encouraging broader societal changes to support inclusion.
In addition to giving African autism self-advocates a larger platform on a worldwide scale, this momentous occasion represented a major advancement towards more inclusive and diverse participation in international debates on disability rights. It embodied the idea that “nothing about us without us,” guaranteeing that the lived experiences of African autistic people be acknowledged and appreciated while forming international laws and perceptions.
