Rise of the nonspeaking autistic revolution in South Africa

2 April 2021 | Cornerstone Articles

In February 2021, nonspeaking activist Zekwande Mathenjwa became a member of the newly-formed Special Interest Group (SIG) on Autism established by the Ethics Committee of the SASLHA, the national body for Speech, Language and Hearing professionals in South Africa.

This is the beginning of a revolution and we are leading it.

Deepak George

Young nonspeaking autistic activists in South Africa are sharing their goals and insights in crystal-clear words: they want communication access for all. Most existing services for nonspeaking people are still built on misconceptions, leaving most nonspeakers without means to communicate fully. Recent breakthroughs by individual activists build on the collective individual steps of other nonspeakers in recent years. Spreading the nonspeaking revolution throughout Africa will take collective responsibility and a change in the prevailing paradigm of disability.

Nonspeaking autists want us to listen

Autism is not my problem. What people think autism is, is my problem. My autism is not my best partner when I always have to try to turn myself and my humanity into someone who doesn’t act like an autistic person.

Nicolaas Paulsen

During the past four years, several young nonspeaking activists and bloggers have risen up in the autistic community in South Africa. They include Akha Kumalo, Deepak and Adarsh George, Nicolaas Paulsen and Zekwande Mathenjwa.

All of these activists have a passion for ensuring communication access for others like them. Some of them also appear briefly in the 5-minute film LISTEN, launched by the American organisation CommunicationFIRST on 12 February 2021. The narrator for LISTEN is a speaking autist from South Africa, Bobby Shabangu.

The launch of LISTEN coincided with the US release of Sia Furler’s film Music, which presents dangerous misconceptions about nonspeaking autistic people. Read reviews of Music by nonspeaking critics.

LISTEN comes with a free PDF toolkit created in collaboration with the Autistic Self Advocacy Network (ASAN) and the Alliance Against Seclusion and Constraint (AASC). The toolkit explains how to support nonspeaking autistic people’s rights through media representation. It includes a disambiguation of terms such as nonspeaking versus nonverbal, and AAC (Augmentative and Alternative Communication). It also provides guidelines for workshops and watch parties based on the content, and guidance on communicating with nonspeakers. Download the toolkit here.

Misconceptions about nonspeakers translate to inappropriate therapies and educational models

Autism professionals and educators are largely unaware that for the majority of nonspeakers, the most challenging aspect of being autistic is a movement disorder called apraxia. Watch this short video about ‘severe autism’ by nonspeaking Canadian activist Damon Kirsebom.

Because of these misconceptions, few nonspeakers have access to the kind of support that helps them communicate fully. Some remain in Grade I for their entire school career (if they are in school at all). Often, professionals talk to them as though they are babies. Unable to articulate their frustration, loneliness and trauma, they may experience frequent meltdowns.

Some autists who have wealthy parents are subjected to many years of intensive behavioural therapy by expensive therapists who believe them to be intellectually disabled and unmotivated. Such therapies often violate the UN Convention on the Rights of People With Disabilities (CRPD). Watch an interview with education expert Alfie Kohn about why ‘positive behaviour support’ isn’t positive for autistic people.

A breakthrough for nonspeaking activism in South Africa

I am changing the world. 

Zekwande Mathenjwa

In February 2021, nonspeaking activist Zekwande Mathenjwa became a member of the newly-formed Special Interest Group (SIG) on Autism established by the Ethics Committee of the SASLHA, the national body for Speech, Language and Hearing professionals in South Africa. Zekwande, whose words have also been shared with the office of President Ramaphosa, is in Grade 9 at The Sisu Hub, a school for nonspeaking autists in Pretoria. Unlike typical schools catering to nonspeakers, The Sisu Hub provides age-appropriate instruction, including the CAPS curriculum.

As a member of the SIG on Autism, Zekwande contributes to policy, strategy and the curriculum for training professionals who work with autistic people. Zekwande also helps to identify abusive practices used by professionals in therapy, education and institutions, as the SIG works towards accountability and reform. Other members of the SIG are SASLHA members (professional therapists and academics), and an autistic human rights activist from the Autistic Strategies Network, who is able to use speech.

Individual steps contribute to collective progress

Although Zekwande’s appointment in this capacity represents a significant milestone, it happened as a result of many prior steps taken by others like Deepak George, whose profound communication disability prompted his therapist, Nicola Sowah, to seek new approaches along with autistic allies.

Deepak was the first South African autist to transition from no communication at the age of 14, to a letterboard and then to a keyboard, using Spelling to Communicate, a method that addresses the motor challenges that many nonspeakers experience. Deepak speaks of the rise of nonspeaking activists in South Africa as a revolution. He remains a strong contributor to advocacy, and is highly respected for his insightful guidance. His words to professionals, shared along with a video of Akha Khumalo, made a profound impact on delegates at the Autistic Health Seminar 2018 presented by the Autistic Strategies Network. This seminar was also attended by nonspeaking advocate Leonardo Santana, who is able to communicate in Spanish, Afrikaans, English and Xhosa. Leonardo has subsequently moved to Venezuela with his family where he and his mother Maria Carrillo are now actively promoting communication rights.

Today, nonspeakers from South Africa regularly contribute to international online events, such as SpellX (a TEDX-styled event) and Boards & Chords (an online concert) arranged by I-ASC and other organisations.

Spreading the nonspeaking revolution throughout Africa

…many are not so lucky. They are stuck in schools that treat them as low functioning. They have doctors say that they are too stupid to learn. They are stuck in prisons of hell. My heart breaks for them. My soul screams with theirs.

Akha Khumalo

One of the goals of the Autistic Strategies Network is help ensure that every nonspeaking autistic person in Africa has access to a means of communication that meets their needs. This means working with autistic activists in other African countries to create awareness of what is needed and what is possible. It also means continuing the collaboration between autistic people, non-autistic caregivers, and professionals, in training and awareness. At the same time, it is important to remain autonomous in our support for nonspeakers’ own voices and goals.

The need for fundraising looms on the horizon: most nonspeakers in Africa alive today do not have families who can afford the types of therapies that can enable them to exercise their right to communication. The Autistic Strategies Network does not operate a fundraising account, but collaborates with registered autism-focused organisations such as the Jason Foundation and Raising Hope SA to channel funds to projects that serve mutual goals.

Our vision is for nations to realise their responsibility to ensuring communication access for their most vulnerable citizens, and to provide services at little to no cost. We are under no delusions that governments in a continent still dealing with a pandemic, famines, war and displacement do not even have our priorities on their radar, let alone their ailing budgets; even Deaf people often still don’t have access to sign language and other communication supports. But until everyone has access to communication, we cannot stop. We will use whatever means we can along the way.

Inspiring change

From the ashes I rise; like a phoenix, my words will fly.

Zekwande Mathenjwa

Part of our mission involves inspiring a changed paradigm. The word inspiration is often used in the realm of disability to deny disabled people their rights. The traditional notion is that disabled people should miraculously or through sheer grit ‘overcome’ their impairments to set an example to non-disabled people of how perseverence can, in turn, help them overcome their own lesser struggles. This view of disability, humorously ridiculed by the late Stella Young in her seminal TED talk, places the onus on individuals to triumph over the enormous odds imposed on them by an entire disabling society. Of course, most do not make it through this unreasonable obstacle course. The UN Convention on the Rights of People With Disabilities rejects this paradigm in favour of a human rights approach to disability.

The words in the song below, written by Zekwande Mathenjwa, should remind us that the joy of communication will only be possible for the millions of other nonspeaking autistic people who do not yet have what Zekwande has if everyone fights for each other’s rights—not if we expect disabled people to rise from the ashes on their own or with the help if their families alone, while our societies make exercising their rights contingent on money and other false measures of human worth.


Nonspeaking autists’ experiences of ABA

ABA therapy is a behaviour modification intervention. It is used particularly with autistic children who struggle with communication and self-regulation. ABA is touted as being “evidence-based”, even though evidence shows that most ABA survivors want it stopped. This article, written for a South African audience, includes perspectives of several non-speaking autistics on their ABA experiences.

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