A Report by David Werner on Workshops Facilitated with the Western Cape Association for Persons with Disability February—March 2007

Two Worlds Side by Side

Despite the official end of apartheid in 1994, the nation remains divided into two worlds: the haves and the have-nots. Nowhere is this divide more glaring than in the fast-growing city of Cape Town. The picturesque coastal area of the city is festooned with luxurious housing that rivals that of Palm Beach in Florida, or the French Riviera. The affluent consumer lifestyle of this predominantly white neighborhood—complete with manicured golf links, private yachts, backyard swimming pools, and bicycle marathons (with 30,000 spiffily-outfitted riders)—looks for all the world like upper-middle class suburbia anywhere in the so-called First World. Yet the interior of Cape Town is strewn with vast squatter settlements stretching as far as the eye can see. And the abject living conditions of the under class in rural areas are even more oppressive.

This level of inequity, as one might expect, gives rise to a great deal of crime, despair, drug abuse, and violence. As in other extremely polarized societies, the rich in South Africa—for their own safety and survival—have had to turn their stately homes into fortified prisons with high razor-wire topped walls, and elaborate burglar alarm systems.

In terms of its total national wealth, South Africa is by far the richest nation in SubSaharan Africa. The World Bank now ranks South Africa not as a poor or “developing country,” but as a “middle income nation.” It has a GDP (gross domestic product) per capita of over US$10,000: higher than some countries with a far superior “quality of life” quotient their citizens, such as Cuba or Costa Rica. With a more equitable distribution of the nation’s resources, South Africa would be able to provide adequately for the needs of all its citizens.

The new, socially progressive Constitution of South Africa includes many policies and statutes to protect the rights of the disadvantaged, including guarantees of health care, education, adequate housing, water and sanitation, employment opportunities, and a fair minimum wage. It also includes a comprehensive safety net for people with disabilities, the elderly, and others with special needs. But for diverse reasons—including pressures from the international market system—the government has been aggravatingly slow in implementing these constitutional laws and human rights on a large scale. This failure to implement the idealism embedded in the new constitution has led to a great deal of disillusionment and social unrest.

The housing situation is a glaring example of the less than optimal implementation of the ideals of the new constitution. In the vast periurban squatter settlements or “townships,” and in the former “home lands” in rural areas, millions of families live in tiny makeshift shacks made of card board, tarpaper, and/or scraps of wood. Little by little, the government’s low cost housing project has undertaken to replace these shacks with small cement block huts. However, progress is slow, and the waiting lists are long. There is no functional provision for giving priority to those in greatest need. On the contrary, families with disabled or chronically ill members too often end up at the tail end of the list—which can mean waiting 4 to 5 years or longer. Bribes and corruption lead to a situation where those with lesser needs often get served before those whose needs are greatest.

Ironically, the rather patchwork allotment of housing in the sprawling squatter settlements has tended to create a new level of social division among the underclass. On the small parcel of land provided the new cement block hut, the lucky recipient of the hut often rents space next to the house to one or more destitute families, who put up makeshift shacks, often without electricity, water, or sanitation. The result is that the new government-subsidized block houses tend to stand out like small boats in a choppy sea of improvised hovels.

Preliminary Home Visits

The WC-APD organizers had initially planned to include in the workshops only staff members, professionals, and daycare service providers. However, I had insisted that some of the disabled people and family members (whom they called “clients” and “consumers”) also take full and active part in the workshops so that they could participate in the problem solving processes. Before beginning the CBR workshops, I asked if I could visit the homes and communities of several people with disabilities living in difficult circumstances in order to gain a clearer idea of their problems and possibilities. I also wanted to recruit candidates for the workshops and to explain to them how important their observations and suggestions would be.

On the home visits I was usually accompanied by Lara Strong, a young occupational therapist who works for the centraloffice of the WC-APD in Cape Town. Laradid a wonderful job explaining the complex dynamics of disability-related needs and services in South Africa. In addition to Lara, on our home visits I was usually accompanied by local social workers from the APD branch programs, who were familiar with the local people with disabilities and their families.

Factors Aggravating Disability

In our visits to people’s homes, it was apparent that one of the biggest obstacles to meeting the needs of people with disabilities is overwhelming poverty. High unemployment, low wages, single parent households, and inadequate support services aggravate poverty. In low-income settlements and rural areas of the Western Cape nearly 60% of households have only one parent, most often a widowed or single mother. And 15% of households have no adult at all, only children. Adding to the extensive poverty, both through incapacitating illness and the death of breadwinners, is the high incidence of HIV-AIDS.

Clyde’s Story

One of the first homes we visited—in a poor neighborhood on the edge of Cape Town—was that of a bright, friendly young man named Clyde, and his kind-hearted wife, Jacky. Clyde has two brothers with microcephalus (small brains) and “intellectual disability.” The more severely impaired brother, Morne, lives with Clyde, Jacky, and their two young children in a tiny shack made of wood slats and tarpaper.

Morne’s less severely impaired brother, Eric, stays with the father, as do a half-sister of the 3 brothers, her boyfriend, and her child.

The dynamics between the two households are not good, especially those between Clyde and his father. The father refuses to let anyone from Clyde’s shack enter his house; he refuses to let them run a hose or electric line from his house, or to use the toilet. Because the shack doesn’t exist legally, it has no utility rights. This makes the estrangement between Clyde and his father especially difficult for Clyde’s household. A friendly neighbor has let them run an electric line to the shack and allows them to fill buckets of water. But toileting and sanitation remain a big problem. They all use a plastic bucket. At least Morne is more or less bucket trained. But emptying the bucket in the crowded neighborhood is a touchy issue. When Clyde’s father isn’t home, Clyde or Jacky empty the bucket in a sewage sluice on the far side of his father’s house.

The friction between Clyde and his father was triggered by a dispute over the “disability grant” that the government provides every month for the two disabled brothers. The new South African Constitution, at least on paper, is disability friendly. The government provides a very modest monthly stipend (about $20 US dollars) to householders with a disabled child or family member. While this grant is meant for the needs of the disabled child, often it is a poor family’s sole source of income. As a result, very little ends up directly benefiting the disabled child.

In the case of Clyde’s two disabled brothers, their father—who registered himself as the sole provider (since the mother is dead)—receives two disability stipends from the government. Although his most disabled son, Morne—who requires constant supervision—lives with Clyde, the father doesn’t share the grant money. And he is angry at Clyde for attempting (unsuccessfully) to legally get his fair share of the grant.

The underlying issue is that Clyde’s father is alcoholic. He uses much of the disability grant money to support his habit. Related to the drinking pattern in the father’s household there is a pecking order of violent abuse. Apparently when the father and his daughter’s boyfriend have been drinking, they sometimes beat the daughter. And she, in turn, at times takes out her anger cruelly on her disabled half brother, Eric. The daughter, who had a black eye when we visited the home, admitted to the APD social worker that one time when the boy didn’t behave, she burned him with a hot iron. “It’s the only way he learns,” she explained. Eric silently showed us the scars.

In welcome contrast to the pattern of violence in the father’s house, in Clyde’s and Jacky’s impoverished shack, the environment appeared to be one of love and understanding. This was reflected in the open, trusting, good-natured attitude of the disabled youth, Morne. Clyde explained how difficult it was to support the family, with his low-paying job. His wife Jacky would like to work, too. But caring for Morne is a full time occupation—and there are no day care centers that would take him. If unwatched Morne has a tendency to wander off and get lost. Fortunately, whenever this has happened, friendly neighbors have found him and escorted him back home. But Morne has the mind of a toddler. Jacky is afraid he might be hit by a car, or be molested or given drugs by the local gangs. So she has resigned herself to staying home and caring for Morne.

Both Jacky and Clyde are very kind to Morne, and do what they can to help him learn skills and become more self-reliant. They have even taught him to help with household chores, like sweeping the patio and washing the dishes.

One of the outcomes of this visit was to invite both Clyde and Jacky to the Community Based Rehabilitation (CBR) workshop I would soon be conducting. Both clearly have a lot of good will toward people with disabilities, as well as a lot of practical, hands-on experience. They are the kind of people who, with additional training and encouragement, can become active community rehabilitation workers, visiting other families with disabled children in their neighborhood, and bringing families together to discuss and seek solutions to their common needs.

As it turned out, both Clyde and Jacky took part in the workshop, to which they contributed a lot by sharing their experiences and by making realistic, down-to earth suggestions. The last I heard, plans were being made to include Clyde as a member of a CBR team with the local branch of the APD.

By the same token, the APD is trying to arrange for Clyde and Jacky to receive a disability grant for Morne. The APD is also investigating the possibility for Clyde and his family to get a government-built, cement block house. Clyde is already on the waiting list for one, but often the delay is 5 years or more. One of the problems is that if and when Clyde does get an improved house, it is likely to be in a new neighborhood where he doesn’t know the neighbors, and where gangs of thieves and drug users are common.

Clyde says that rather than be in a better house in an unfriendly environment, he would prefer to stay in his shack, in a familiar neighborhood where people know and help one other. His biggest hope is to make peace with his father, whom he knows has a positive, caring side. He wishes he could help his father to give up his heavy drinking. The APD, through its social workers, is also trying to work with the father, and help rebuild the family bonds. But it’s an uphill battle.

Internalized Oppression and Fetal Alcohol Syndrome

Because of South Africa’s recent history of apartheid, with its systemic impoverishment and disempowerment of the poor black population, many people still have low self-esteem and a pervasive sense of hopelessness. Alcohol and drugs are a tempting form of escape. Drug dependency, especially among youth, is very common and too often leads to a life of crime and violence to sustain the habit.

In South Africa one of the most common causes of disability in children is fetal alcohol syndrome (FAS). It results from heavy consumption of alcohol by mothers during pregnancy.

Children with FAS tend to be mildly retarded, very restless, have poor attention span, and often strange or inappropriate behavior. They also tend to be under weight, grow slowly, and get sick often.

The health departments and rehab programs such as APD conduct ongoing campaigns to discourage drinking during pregnancy and to educate women about the risk of FAS. But the problem persists—largely because so many women have such a low opinion of themselves and feel it is futile to try to improve their situation. The effects of an oppressive social system on the character structure of the oppressed is referred to as “internalized oppression.” The topic came up over and over again in our workshops.