More than twice, Nankie Kgosiemang makes the point that the centre she heads does not promise to perform miracles. When repeated with such regularity, it might pass for self-effacement but there’s reason for it. She has a tricky job of giving hope, and at the same time moderating expectations.
For the past 15 years, she has been Coordinator of Anne-Stine Centre for Children with Disabilities, a day-time facility in Molepolole for children with mental and physical disabilities. The centre provides special education, physiotherapy, as well as speech and occupational therapy.
Even as she tempers unreasonable expectations, she celebrates the remarkable cases. For instance, the seven-year old girl who could not utter a single word when she came to the centre, but was successfully trained in speech. Many others come here without the basic skills of daily living which parents of normal children take for granted, such as feeding and dressing themselves.
“We stimulate the children physically and mentally,” Kgosiemang explains. “Often, mental retardation is accompanied by physical disability. The skills that we seek to impart to the children are based on activities of daily living like how to wipe off their drool, or even toilet training. These skills are meant to fit them into the society so that they can be as independent as possible.”
She explains that there are different degrees of mental retardation ÔÇô mild, moderate and profound. This determines the level of success that various interventions would bring out of each child. “You’ll succeed with others, and with others you won’t, but you will only manage to move them somewhere towards being more independent. Sometimes it’s like a miracle,” Kgosiemang says.
She notes a fundamental problem. From an early age, most children who have disabilities are excluded from a lot of daily activities, and therefore, they don’t get to socialize. Obviously, this impairs development of their social skills. The culprits range from parents, relatives, siblings ÔÇô and the wider community. That’s why Anne-Stine’s management decided that Thursday be a day-off from the centre. On the day, the centre’s teaching staff undertakes home visits to interact with the children in their own environment.
“The home visits are meant to ensure that we work with the parents and other care-givers. We visit them at home to see how they cope. When we meet care-givers we discuss the children’s activities.
It’s important to ensure that the child is made to fit in at home as well. Sometimes we meet obstacles. Some parents are impatient with the children because progress is slow. Others neglect to engage them in the daily activities that we recommend, and that sets the children back,” she says.
All new entrants are assessed by a team that comprises a physiotherapist, and speech and occupational therapists to determine each child’s peculiar needs and a programme to be followed.
They start off in the stimulation class ÔÇô where they are taught to identify objects by shape and colour, as well as parts of the body. In this class, priority is given to development of communication skills. When they are ready to learn pre-writing and reading skills, they move to the pre-school class. Those with the aptitude graduate to the local primary school, the only one in the village that has a specific class for children with special needs. The special class is meant to ensure that they learn at their own pace, but at break-time they get to mingle with the normal children.
Setting aside a class for children with disabilities has its own critics who argue that the practice shelters them from the rigours of everyday life, and does not adequately prepare them for the after-school experience. It is a view that Kgosiemang does not entirely share.
“Inclusive education is not easy,” she argues. “Those with mild retardation might cope, but very slowly. Let’s be realistic about the capability of the children we are talking about here.”
The centre opened with only 12 children, the low number being an indication of the parents’ reluctance at the time to bring out their children. Having a child with a disability carried a stigma. However, the tide seems to have turned. Today’s enrolment stands at 22. It is a drop from the all-time high figure of 35 children, but Kgosiemang is not overly worried. They are cared for by a staff of 13, including the coordinator.
In an environment with entrenched beliefs that blame the birth of a child with disability on anything from parents’ adultery to divine punishment, it had to take quite an effort to free parents from the grip of shame. Kgosiemang emphasises that the child’s progress depends a lot on how it is treated by its immediate circle, which underscores the importance of changing each family’s attitude from shame to unconditional acceptance. By nature, these are very sensitive children and they are quick to detect if they are not loved. Where they feel unloved, the natural reaction is withdrawal, which worsens their condition.
“To a large extent, society’s attitude towards children with disabilities has improved. Today’s parents of these children are some of the country’s professionals who are learned people. These days the support system has also improved because there are a number of support groups, which are good for group therapy. One of the things we encourage parents to do from an early age is to give their children exposure because if they don’t, the day they go out for the first time they become wild,” Kgosiemang says. “Some parents don’t take them out when they go shopping because their movement can delay someone who is in a hurry. That’s why we urge that when you take them to the shops, it should be treated as the child’s time because they also need the experience.”
Some parents, especially of autistic children, keep their gates locked as a safety measure. While she has sympathy for what the parents go through, Kgosiemang cautions that keeping a child behind locked gates is not the best solution because it imprisons the child. It is the same reason she has refused to build a brick wall around Anne-Stine.
There are various reactions by parents when they first learn about the state of their child. These range from denial, anger, to deep dejection. Ultimately, they all end at the inevitable question, why me?.
From Kgosiemang’s experience, those in denial are the most difficult to help mostly because they take a long time to seek assistance. She advises parents to monitor their children’s development and look out for delayed milestones, which would usually be the first indicator that the child has a disability.
For every teacher, one of the most emotional moments is when the child graduates to the next class. The hope is that one has adequately prepared the child for what is ahead. At Anne-Stine, graduation elicits mixed emotions. Such sentiments are captured in Kgosiemang’s loaded statement that, “some leave because we have succeeded; others because we have reached a point where we can’t do anything else…… Our wish is that they could all leave Anne-Stine for the special class [at the primary school]”. Remember the earlier caution about not expecting miracles?
But she emphasizes that the approach is not all about the academic curriculum. There is celebration that even those who can’t go to the primary school are equipped with skills that will somewhat ease the task of their caregivers. It goes back to the underlying goal of fitting the children into the society.
“That’s where my fight is,” Kgosiemang responds when asked what happens to the children when they leave the mainstream school system. “When they grow up they go back to society. The boys might begin to fraternize bars where they pick habits like drinking and smoking. Some of the girls become sexually abused as young adults.”
To fill that vacuum, Kgosiemang’s plan is to build sheltered workshops modeled along the concept of education with production to teach skills like bricklaying, and leatherworks. The workshops will serve as education centres and a source of employment at the same time. Anne-Stine has acquired a 15-hectre piece of land to carry out that vision. The next challenge is to raise the necessary funding for the project.
On a benchmarking trip to South Africa, Kgosiemang visited one centre which had sheltered workshops. In one of the workshops, people with various mental and physical disabilities made leather seats for BMW. They earned a decent living out of that. To guarantee success, such an initiative calls for more than gestures of sympathy. It requires partnership with the business sector outsourcing some of its activities, especially those that don’t require much technical expertise, to the centre.
“These children like to be seen to be responsible. I know that they would be happy to be able to contribute in whatever way they can towards their families’ sustenance. It would fulfill them. They like to be appreciated,” she says.
If the initiative does take off, it would go a long way towards further changing society’s perception of children born with disabilities.
Somehow, Kgosiemang seems to have always been destined to work with those among us who face particular challenges. Before coming to Anne-Stine, she was coordinator of a centre for the visually impaired in Francistown. Beginning her working life as a primary school teacher, she was part of the first group of teachers that government sponsored for a certificate course in Zambia to be trained to teach children with disabilities. She still recalls her utter amazement at her first encounter with a visually-impaired person who not only walked unaided, but was literate as well.
“When you successfully teach a visually-impaired person to walk unaided, you have given him mobility. What can be more fulfilling and empowering than being able to move about without anybody’s assistance?” she says. “It goes to show that with effort there can be an improvement in the quality of life of every person born with disability.”
She confesses to some occasional low moments. “Sometimes I get depressed, especially in situations where I have no control,” she says. “There are days that I hurt inside after home visits. There are instances where a child is locked in a room without even being fed.”
Those cases show that even with the improved attitude, it is still not easy to accept a child with disability. It can be especially hard for the other normal children, who have to face the scorn and ridicule of their peers at the playgrounds on account of their sibling’s condition. Naturally, the children whose sibling has a disability wish Anne-Stine were a place of miracles.
One such child once asked Kgosiemang: “Will my sister go to Kgari Sechele (Secondary School)?”
“I went into my office to cry,” she recalls.
