‘Nothing about us, without us!’ Disability and building a living Constitution

By MZ Suleman & TF Hodgson 22 May 2014

‘Nothing about us, without us!’ This is the unifying slogan of the disability rights movement in South Africa. It stems from the idea that no policy or law which affects a certain group of people should be developed or implemented without the input and representation of the people it affects. The slogan captures the deeply democratic and participatory nature of our Freedom Charter-inspired Constitution. By MUHAMMAD ZAKARIA SULEMAN & TIM FISH HODGSON for SECTION 27.

The Freedom Charter exclaims that “the people shall govern!” The Constitutional Court has found that this same ideology of ‘participatory democracy’ is at the Constitution’s core. Like the Constitution itself, however, this principle is not rhetorical or merely a lofty ideal of application in the policy and law-making context. People’s life-experiences and self-described narratives should be placed at the core of our understanding of constitutional rights.

Teaching and learning human rights

Members of the Know Your Constitution campaign often find that we have more to learn about the meaning of rights from those to whom we seek to explain their legal and social significance. As a campaign member has already pointed out, learning is any event always most effective when it is a two-way street. In March 2014, the Know Your Constitution campaign hosted a series of constitutional education workshops at the Constitutional Court. One of the these workshops was presented on the rights of people with disabilites by SECTION27 and Afrika Tikkun’s self-help group Sidinga Uthando. Sidinga Uthando is a self-help group of caregivers of children with disabilities from the township of Orange Farm, south of Johannesburg.

Unlike previous seminars we have run, which opened up with a presentation on the legal framework on the rights of people with disabilities, or a striking but dry factual description of the terrible circumstances faced people with disabilities in accessing basic services, we kicked off by giving a platform to three mothers of children with disabilities to tell their and their children’s stories.

Each of these women, bold yet shaken up by stage fright, stepped up to the front to give their first English-medium presentation to an English-speaking crowd. They spoke – in broken English but with unbroken clarity – about the challenges of being mother to a child with a disability. The stories varied from mother to mother. Collectively, they spoke about the burden of care imposed less by their children’s impairments, and more by the attitudes and perceptions of their neighbours.

Elizabeth Ramakatsa is the chairperson of Sidinga Uthando, and has a six-year-old son with hemiplegia. Although he is in Grade R at an Afrika Tikkun Early Childhood Development centre, it is uncertain whether he will be accepted into a local primary school next year. Maria Mashimbye has a 10-year-old son who is a wheelchair user. It took her years to finally find him a space in a school in the neighbouring town of Sebokeng. Maria wondered aloud what God’s plan could be for her and her child, given the stigma attached to disability in her community. She painfully described how community members had told her that her child looked like a ‘cockroach’ with a head that looked like a ‘loaf of brown bread’.

Doreen Moloke had to take a bit more time with her presentation. She had to remain calm and focused while her eight-year-old son – who has Down’s Syndrome – tugged continuously at her leg as she spoke about her difficulty in finding him a school. Her child is not currently accessing his right to a basic education, nor has he ever been to school. This despite Doreen’s tireless efforts and applications at multiple schools in Gauteng.

The participants were immediately captivated by these stories. They tilted their heads so as to hear the mothers clearly.

These were people’s lives being narrated openly, as they were experienced with all the fine details, beautiful quirks and simple emotions that only accounts like these can accurately convey. The tellers of the stories drew the audience’s imagination in and transported strangers directly into the their lives: making real the difficulties experienced by people with disabilities to access their human rights.

This was not the capture of compelling statistics, nor was the reaction of participants impressed by rigorous logic and intellectual finesse or overwhelmed by ingenuitive multi-media presentations or situation analyses. It would have seemed wholly out of place in a boardroom and entirely unappealing to a TED audience, the likes of whom attend sexy and cutting-edge debates at The Gathering.

After the facilitators introduced the legal frameworks which are supposed to protect, promote and fulfil the rights of people with disabilities to the participants. To our delight the discussion that ensued was a more engaged and critical one than is often experienced when workshops on technical, far-off, seemingly emotionless laws are taught.

The audience critically examined the complex web of legal provisions on inclusive education through the prism of the mothers’ life experiences. Many of the legal issues discussed were met with contemplative, empathetic glances at the eight-year-old in the room. Questions buzzed around the room throughout the discussion: “But what is the point of the law if this child is not getting a place in school?”; “Does the Constitution not say that everyone is equally protected by the law?” One overarching question simmered: “Is everyone really equally protected by the law?”

Experiencing the power of human rights

In South Africa, more than two million people have some form of disability. A mere 104,000  children with disabilites are enrolled in special needs schools. These children only have a choice of 63 schools nationally to matriculate from. A further 118,000 learners with disabilities are enrolled in “ordinary schools”. This leaves a wopping 500,000 children with disabilities who do not attend school at all.

These chilling statistics have not demotivated the people of Siphilisa isiZwa (SI), a grassroots movement of people with disabilities who have begun to use their understanding of human rights to further their consistent attempts to access education for learners with disabilities. Their story aptly narrates the often invisible complexities and hurdles faced by vulnerable persons in acessing their constitutional rights. SI have used own their stories as powerful legal tools to shape the manner which constitutional issues are being addressed. With the assistance and encouragement of human rights lawyers, they have taken responsibility for collecting 300 stories in the form of statements from people in the surrounding communities. These stories not only capture the meaning and effectiveness of rights to their lives, but are now also invested with the power of the law: SI may choose to use them legally valid proof of violations of their constitutional rights in court proceedings. If they do choose to do so, their lives will become part of law – part of our understanding of human rights. This will help policy-makers, legislators and judges to understand the Constitution through their lives and critically engage with it through this lens.

Writing and living the Constitution

Just like the rights of people with disabilities, the society envisioned by the Constitution will not magically appear fully formed in a puff of smoke, just because the Constitution requires it. There is, and will be for a long time to come, a stark contrast between the rights detailed in the Constitution and the realities experienced by the vast majority of people in South Africa.

This is not reason to abandon the Constitution; on the contrary, it is added reason to ensure that we work diligently towards closing the distances between what the Constitution requires and the realities faced by the people in South Africa. The task is made more difficult by the fact that most South Africans are not encouraged to engage with and understand the Constitution. Increased Constitutional literacy is therefore central to our project of transformation. We should not lose sight of these realities when we are undertaking Constitutional education. To do so is not only ineffective pedagogy, but also undermines the transformative potential of the Constitution and decreases its legitimacy in the eyes of those who most need it.

The Constitution, as the Constitutional Court has explained, is a living document; it is not a fixed book written in blood or cast in stone but an open story. If we do not keep it with us, it will like many many other Constitutions worldwide become stuck in the past and obstruct our progress as a society. To prevent this, we need to encourage people to follow in the footsteps of  Sidinga Uthando and Siphilisa isiZwa, and continue writing it. DM

Photo: A severely mentally disabled child kisses another child at the Tshepong Stimulation Centre in the Katlehong Township near Johannesburg, South Africa, 12 May 2010. EPA/JON HRUSA

Gallery

While we have your attention...

An increasingly rare commodity, quality independent journalism costs money - though not nearly as much as its absence.

Every article, every day, is our contribution to Defending Truth in South Africa. If you would like to join us on this mission, you could do much worse than support Daily Maverick's quest by becoming a Maverick Insider.

Click here to become a Maverick Insider and get a closer look at the Truth.


Stimulus Package

Ramaphosa steps up to economic realities with R50bn package

By Greg Nicolson

"Look for lessons about haunting when there are thousands of ghosts; when entire societies become haunted by terrible deeds that are systematically occurring and are simultaneously denied by every public organ of governance and communication." ~ Avery Gordon