Visits to Daycare Centers, Children’s Rehab Centers, and Sheltered Workshops
In addition to visiting a number of homes, I was also taken to visit a number of day care centers, and APD-run centers for rehabilitation and special education. The centers we visited were coordinated by the WC-APD branch programs in the areas of Cape Town, Worchester, and George.
In South Africa there are laws providing the right of all children to education appropriate to their capacities and needs, with the goal of helping every child reach his or her potential. There is also an official policy of mainstreaming disabled children as much as possible. In reality, schooling possibilities and services for disabled children are few and far between, especially in rural areas. For this reason, the Association for Persons with Disabilities (APD), as a large, non-government organization, makes an effort to have as farreaching an area of coverage as it can. However, despite the APD’s many branches, and the scores of towns and villages that are reached, the APD is the first to admit that there are many disabled people who are not reached.
The desire to make services available to everybody was one of the motivations behind the WC-APD’s interest in exploring alternative approaches to Community Based Rehabilitation. In the workshops, one of the options that was explored—with examples from PROJIMO in Mexico—was that of conducting disability awareness-raising activities with school children, and then mobilizing the school children to conduct a village or neighborhood survey, visiting homes to find out how many disabled children (and adults) there are, and which could most benefit from some kind of assistance.
One of the biggest expressed needs of poor families and single mothers with severely or multiply disabled children is for day care facilities or crèches where they can leave their children in safe hands while they are at work. Therefore one of the main focuses of the APD has been to help set up or support a variety of such centers, ranging from small home-based neighborhood crèches to large multipurpose rehab centers.
On my travels to the different APD branches where the workshops were held, I had an opportunity to visit a full range of these centers, large and small. At best, these centers were well run and provided a spectrum of group and individualized activities for the children (and sometimes disabled youth and adults). At worst, the centers, or crèches, were little more than holding stations where mothers could park their disabled child while she worked.
Most of the “care providers” at the small neighborhood daycare centers were local mothers of disabled children who provided services in their homes. Mothers of other disabled children would drop off their children on their way to work, and pick them up again on their way home. Or, in some cases, the APD would provide a van and driver to transport the children to and from the center.
Some effort has been made to teach the local mothers who serve as day care providers an assortment of basic skills for working with disabled children. These skills range from providing play activities and early stimulation, to feeding techniques, potty training, and teaching various daily living skills. But for the most part, the training has been too brief, follow-up visits by skilled workers too few, and the children too many and too severely disabled. Despite these limitations, most of the caregivers were doing a fairly good job. What impressed me most was the concern and affection they had for the children—even for those who were least attractive, least responsive, or the biggest trouble.
The Story of Frances
The APD Branch Center in Worchester has recruited a number of mothers of disabled children from poor communities to work as therapeutic assistants with multiply disabled children. I was deeply impressed by the way one of these mothers—an ebullient woman named Frances— worked with these children, demonstrating a wonderful combination of skill, patience, and love. What was most apparent was Frances’ great joy in working and playing with these children, and her gentle but skillful ways of bringing out the best in them.
At the close of the day at the Worchester Center, we (Lara, a coordinating social worker, our chauffeur, and I) had a chance to drive Frances home. When we arrived at her home in a low-income settlement, I found she and her extended family of 10 people all lived crammed into a minute cement-block house consisting of one room about 3 meters long and 2 1⁄2 meters wide.
There was room for one double bed with a small mattress on the floor beside it. Curled up on the bed in a fetal position was Frances’ profoundly disabled child, who looked to be 5 years old but who was actually 20. The kitchen was crowded into one corner. There was virtually no furniture—partly because there was no room for it. On a small table was the family’s single luxury: a large color television set.
Frances explained that the biggest difficulty with her housing situation was that there was no toilet. As with in Clyde and Jacky’s household, everyone had to take turns using a plastic bucket, with no privacy. But the real problem was where to empty the full bucket. Neighbors some times let them empty it in their toilets, but needless to say they were less than enthusiastic.
The cost of installing a simple flush toilet at Frances’ house would not have been great. The plastic tubes for drainage into the sewage system were already installed to one side of the house. All that would be needed was a toilet bowl and a small enclosure for privacy. But Frances explained that as the single reliable bread winner for the family she never was able to save enough to make even that modest investment.
What astounded me even more after seeing the conditions in which Frances lived was the way that every day she was able to show up to work at the APD Center immaculately dressed, energetic, and cheerful. I found it very humbling.
Fortunately, our visit to Frances’ home together with leaders in the APD program paid off. Appalled by the conditions in which one of the programs most dedicated workers lived, the social worker accompanying us managed to obtain a toilet bowl and a few planks to build a small enclosed latrine. So now at least Frances’ family has a toilet.
Such experiences make it obvious why home visits are important!
Why television? We made a point of inviting Frances to the CBR workshop in Worchester, and her perspective was enlightening. For example, in one of our “But why?” and chain of causes sessions, the question came up, “Why do so many very poor family choose to buy a television rather than spending their very limited money on more basic or health-protecting essentials?” In this context, someone asked Frances why she had invested in a TV but not a toilet. Frances replied that the TV—apart from giving people whose lives were so walled-in a chance to see the larger world—was a means of maintaining a degree of sanity in a crowded, frustrating, oppressive environment filled with hardships and seemingly irresolvable problems. “For us, television is a kind of safety valve,” she said. “It helps us create an imaginary distance from our problems when there isn’t really any distance at all.”
“You mean it acts like a kind of drug?” asked a psychologist. “A tranquilizer.”
“A painkiller,” answered Frances.
The APD branch facilities
Each of the WC-APD district branches we visited, in Cape Town, Worchester and George, had at least one large, comprehensive center with a wide spectrum of services and activities ranging from special education, to skills training programs, to “protected workshops,” to orthopedic appliance shops and “Roll In Shops” where families could purchase everything from assistive devices to diapers.
The quality of services in these large facilities tended to be much more sophisticated, professional, and in some ways better than in the neighborhood crèches. Again, what impressed me was the good will and caring attitude of many of the staff.
A few of the staff members and trainers were themselves disabled, or were parents of disabled children. We talked about the importance of working more people with disabilities into leadership positions. The staff agreed and said they were trying to do more in this direction.
The Need for Simple Technological Creativity
In many of the Community Based Rehabilitation (CBR) programs I have visited in various countries, a common weakness is that, in a well-reasoned attempt to place more emphasis on the social aspects of rehabilitation, too little emphasis is placed on the technical and therapeutic side. Specifically, too often there is a shortage of individualized problem-solving creativity when it comes to technical aids and simple assistive devices.
When I was first invited as a consultant with the WC-APD, I suggested including a workshop that focused on this issue, but I was told that in South Africa the government supplied a full range of the necessary assistive devices, and that this was not an issue. However, as I visited homes and programs prior to the workshops, I found the same situation in the Western Cape that occurs in so many other places: namely that a lot of the wheelchairs, special seating arrangements, and other assistive devices routinely given to disabled children are inappropriate to their needs, and at times even counter-productive.
The Madiba Buggy One brand of assistive equipment unique to South Africa is produced by a company called Shonaquip. This company was started by a mother who began by designing a special stroller, or “buggy” for her daughter with cerebral palsy. The company evolved into a large, very profitable industry, and today is the main supplier of assistive equipment supplied by the government. The primary assistive device produced by Shonaquip is an elaborate stroller, the “Madiba buggy.” It is an ingenious, highly adaptable device with an assortment of felt-covered Velcro adjustable cushions and wedges, which can be fitted to the needs of the individual child. But the buggy has two big problems: 1) it is very expensive; the government could respond to the needs of many more children by providing simpler, community-made, low cost equipment. And 2) the buggies are so massive that they are very hard to transport, especially on buses.
Thozama’s Buggy Blues
An example of this transport problem was encountered by Thozama, the mother of a beautiful little boy with cerebral palsy. Thozama is a part time community rehabilitation worker in a new pilot program of the WC-APD called “Partners for Life.”
We visited her in her small wooden hut on a hillside in a poor settlement near Cape Town. It was pouring rain at the time we got to Thozama’s house, and we got our van stuck in the mud. Her boyfriend and neighbors helped us push the van out.
When we asked Thozama about her needs, the first thing she mentioned was the trouble she had transporting her child. The Madiba buggy she had been given was way too big to get onto the crowded bus. And it didn’t fold. She preferred a small foldable stroller she had.
But the stroller, too, had problems. When the boy’s spastic body stiffened into extension, he would thrust forward in the seat so far that his feet would get entangled in the front wheels. She had tried all kinds of straps, including a groin strap that encircled his hips. But still he would thrust forward until his discomfort caused him to whimper plaintively.
Together we looked for a solution. We saw that a big part of the problem was that the back of the stroller slanted backwards, while the seat was horizontal. Even a non spastic child would easily slide off. We found that by lifting the front of the seat cushion higher, so the seat was at a right angle to the back, this prevented the boy from slipping forward. It also bent his hips more, which reduced his spasticity.
To keep the front of the seat cushion elevated, we used a roll of paper towel. This we held in place by running a piece of broomstick through a hole, so that the ends of the stick were held in place by the diagonal rods that formed the lateral forward edges of the stroller. That way the “seat lift” could be easily removed to fold the stroller for travel on the bus.
Thozama was thrilled at the discovery of such a simple, cost-free solution to a problem that had made her daily travel with her son so difficult. But what excited her most was the innovative problem-solving process. As a community rehab worker who regularly visited other mothers with disabled children, she now felt empowered to help them figure out simple, low cost solutions. To some extent, the problem solving process had been demystified.
Regularly, on our visits to homes and centers, we encountered similar, fairly simple technical problems. With a bit of imagination and ingenuity, many of these problems could have been quickly and easily resolved at little or no cost.
The Three Workshops
During my Western Cape visit I facilitated 3 two-day workshops in different districts. At first there were only a small number of people with disabilities and family members present, but by the third workshop almost half of the participants were people with disabilities or their parents. Participants covered a wide range of different disabilities, including cerebral palsy, spinal cord injury, blindness, epilepsy, and intellectual disability.
The first day of the assembly in each district was essentially a seminar. Using digital slide shows, I shared with the group a range of experiences from Mexico (notably PROJIMO) and other countries.
I stressed the importance of combining the best of CBR, which reaches out to those who are most marginalized, with the best of the Independent Living Movement, which involves empowerment and leadership by people with disabilities themselves. We discussed the importance of achieving a balance between the social and technical sides of rehabilitation.
We considered how essential it is to look at the most basic needs of the disabled person and their family, such as nutrition, health, housing, income generation, and not just at the disability. And above all, we shared examples and stories that demonstrate how empowering it can be to look at people’s strengths rather than their weaknesses.
The second day was an interactive workshop. Participants repeatedly divided into small groups to identify and examine some of the biggest challenges facing people with disabilities and their families in South Africa today. We explored everything from short-term ways of coping at the individual and family level, to possible long-term solutions to the causes underlying the problems that those with disabilities encounter. With regard to the underlying causes, it was clear that collective action at the community, national, and even international level is needed. We did all this through discussions, debates, flipcharts, drawings, and role-plays.
Most importantly, we gave ample opportunity for the participants with disabilities, along with their parents and family members, to take the floor and tell their stories. We asked them to tell us about their hopes and dreams. What were the biggest obstacles they confronted in getting ahead with their lives? Which of the APD services they had experienced did they feel most positive about? What would they like to see done differently?
This in-depth interchange between the APD staff and their “clients” was an eye opener for all of us. Many felt that, in terms of attitude change, it was the most important part of the workshops. In our pre-workshop planning sessions with the APD staff, it had been apparent that, although there was a lot of charitable good will toward the people with disabilities and their families, too often there was a rather condescending attitude. Time and again I heard the professionals say that their clients lacked initiative, that all they wanted were handouts, and that they had no motivation to improve their lives. These pejorative judgments tended to be sweeping—to include “people with disability and their parents” categorically—as if all shared the same characteristics of dependency and lack of motivation.
To interpret these characteristics of the clients as being the outcome of “internalized oppression” contained a kernel of truth, and seemed sympathetic. Yet I began to wonder if this diagnosis did not in itself inflate and perpetuate the problem. Too often the social workers expectation of apathy and lack of motivation of their “clients” seemed to produce a demeaning situation where they found what they were looking for.
But when the disabled people were included in the planning process, this “no hope” image was shattered. As the people with disabilities told their stories, it became clear they were very eager to over come their difficulties and do something meaningful with their lives.
In summarizing what she had learned from the workshops, one of the staff said: “I think we need to look at people with disabilities and their families more as friends and partners in the search for solutions, and not as clients.”
The role-plays, or improvised skits, performed during the APD workshops provided an opportunity to portray the uphill struggles and enormous barriers that people with disabilities and their families face. We divided into small groups, each of which prepared a role play, and then the groups took turns presenting to the plenary.
In the skits, the groups were asked to act out one of the biggest problems faced by disabled people, complete with the various personal, environmental and social obstacles they had to struggle with. And finally, they were asked to portray some kind of action that was taken, or might be taken, to overcome the obstacles. In this way, the role-plays would explore the possibility of positive solutions.
Most of the groups acted out true stories from the lives of the disabled participants. The stories covered a range of problems, many of them showing how difficulties created by the disability itself interacted with underlying societal problems such as poverty, drug addiction, gangs, transportation problems, inadequate or inappropriate services, lack of jobs, poor housing, and institutional bureaucracy. The following are several examples.