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Society’s rejected and forgotten – the disabled people of uMhlabuyalingana

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Mark Heywood is a social justice activist and former Editor of Maverick Citizen, a section of Daily Maverick. He is the former Executive Director of SECTION27 and has been a human rights activist most of his life.

According to Section 27 of the Constitution, everyone has the right to social security, and if they can’t support themselves and their dependants, they’re owed additional social assistance. But the best place to test the value of the Constitution is amongst the peoples who most need its protection – like, for example, disabled people living in rural areas.

It seems paradoxical that in one of the most unspoilt natural areas of South Africa, people society seems to regard as “spoilt” are being discarded and forgotten. Umkhanyakude must be the most beautiful district of KwaZuluNatal; the Pongola River stretches contentedly from the Jozini dam to its outlet in Mozambique. Always in the background are the uBombo mountains which roll over and pre-existed the artificial boundaries of South Africa, Mozambique and Swaziland. On the soil itself there is a tantalising variety of fauna and flora; acacia trees, coral flowers, all sorts of aloe.

The paradox lies in the fact that is that Umkhanyakude is simultaneously one of the most rich and most deprived parts of our country. In this beautiful region people eke out what they can to eat.

Over 500,000 people inhabit the district, albeit mainly women, children and elders. Life is dignified but very difficult. Everything that urban dwellers take for granted requires an extra effort for rural dwellers: water comes from communal taps dotted along dirt roads with only occasional transport; many a spaza shop is also a makeshift shebeen; very few homes are electrified and getting to school is a daily hike.

On this terrain the lives of able-bodied people are hard. But for a person with a disability, ordinary living is near impossible. I first heard about these challenges from Rural Rehabilitation South Africa (RuReSA), an organisation which advocates for access to quality disability support services in rural areas. Concerned, I undertook an informal in loco inspection to learn and see more. I was guided by Jabulile Ndlovu, a health care worker of 23 years standing and Assistant Director of Occupational Therapy at Manguzi hospital, and two members of the local Disabled People’s Organisation (DPO), Margret Masinga and Sifiso Shange. Together we spent three days tramping between homesteads, meeting the people they know and work with, and listening to their stories.

One of the most common disabilities in SA is blindness or partial sight, which is estimated in the 2011 census to affect 0.7% of the population. Blindness is the cause of disability in over a third of people considered disabled – but a sad 80% of blind people live in rural areas, only 5-10% of whom are Braille literate. However, whilst blindness is largely due to natural causes, most of those affected suffer some additional degree of handicap that is man-made.

Meet Nthombi. Nthombi is a 40-something woman living in a house made of reeds and wattle. Her life’s radius extends approximately 10 metres from her house, because she has never learnt to move safely outside this known space, and there is no-one to guide her. Within that radius she cooks (under a tree), grows pumpkins and defecates.

She survives on a R1,260 per month disability grant, and receives no other meaningful social assistance. Her grant is quickly eaten up by the daily R40 she must pay someone to collect water for her. On the day we met, she was finally receiving orientation and mobility training (learning to use a walking cane) – thirty years after losing her sight.

Where, I wondered, was the “appropriate social assistance” to which the Constitution entitles her?

A few houses further on, past and through numerous copses and trees, we came upon a spotless, almost art deco homestead. Here I ‘met’ (although he neither saw nor heard us) Stephen, a young man in his thirties. Both blind and deaf since birth, he spends his days lying on a thin reed mat, caged behind a shack, with a dog bowl nearby for food and water. From what we could see, his nights are spent in an adjacent storage shack which he shares with rats. On the floor was a pile of his shit.

Where, I asked myself, had his Constitutional right to dignity gone?

By contrast, accompanying our little entourage was a capable and independent man called Patrick Tembe, also blind. Because of his relative mobility I took him for granted, but at the day’s end I heard his story too.

Patrick has been relatively lucky. Thanks to the persistent support of Jabulile Ndlovu, he was able to attend a school for the blind in Durban until grade 7, which he attained at the age of 18. Patrick learnt to read Braille and says he loves to read. But after leaving primary school he was unable to continue his basic education. One secondary school declined his application because he had no one to accompany him on the journey to the school in Gauteng. Then, while he was still trying to enrol, he turned 18, and a second school declined him admission on the grounds that he was too old. This, in spite of the known trend for disabled people to start learning later and take longer than others. Patrick describes himself as a composer and musician, but his days are whiled away in his homestead without the means to make music, or access to Braille reading material. His is a mind deprived of succour.

Where, I thought, is his Constitutional right to equality?

From these and many other stories I heard, it became obvious that the constitutional right to a basic education has not yet washed up on the shores of disabled people’s lives. Basic education, for them, is a rare privilege and an extremely difficult resource to access. The one special needs school in the district, Sisizakele, has eight teachers and six teacher-assistants for 120 children with vastly differing disabilities. They are short of 25 teachers. A total of 1,000 children are on the waiting list.

Sisizakele is a ‘residential’ school (a necessity for many who are disabled because it eases the challenge of travel): but all that this means is that at night mattresses are pulled out and the three classrooms are turned into dormitories. To its credit the Department of Basic Education is building a grand new school for children with special needs literally out of the sands of Sisizakele. Unfortunately, though, the newly constructed dormitories are double-storey with steps, despite the large majority of the children being significantly physically disabled, and the principal having alerted the DoE numerous times about this problem.

There were many more sad stories. Added up, they create a heavy weight of human suffering, deprivation and indignity.

So where does that leave us, I wondered?

According to our Constitution, people with disabilities are explicitly designated as having equal rights to dignity, basic education, social assistance and every other fundamental need. Yet clearly by omission and neglect each one of these rights is being violated. There are not many human rights lawyers in Manguzi and the grandly titled Department of Women, Children and People with Disabilities might as well not exist for all the impact it has down here.

Unfortunately, inherent in the experience of disability is a lack of voice to speak up for their rights. Protest becomes very difficult when you struggle to make your needs known, can seldom leave your hut, and are perceived by all around you as helpless and worthless. But in uMhlabuyalingana that is about to change. After hearing about these seemingly illusory rights they have, the Disabled People’s Organisation is now developing a plan to claim them. Its many members are ready to stand up for their rights. And Section27 will stand with them. DM

Watch this space for updates. If you can help, please contact Mark Heywood or the staff at Section27 – email [email protected].

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