Families with disabled children in Dar es Salaam, December 1997
A morning in the poorer parts of Dar es Salaam is described, during which Mama Kitenge visits families with children having mental and other disabilities and works with these childen and their caregivers.
by M. Miles, 1997, e-mail: firstname.lastname@example.org
0800: Pick up at the hotel by Augusto Zambaldo in a small, much-used jeep. Augusto is an experienced Italian physiotherapist, now working as Community Based Rehabilitation (CBR) Program Director with the CCBRT, Dar es Salaam, Tanzania.
0815: We meet Mama Kitenge at her small house in a township on the edge of Dar es Salaam. Today's visiting has been specially arranged for me to see several families with mentally retarded children. Mama K is a middle-aged Tanzanian woman of substantial build, formerly a social worker in the government service. She herself has eight children, the oldest aged 24. One of her children is disabled. This morning several other children are also running in and out of her house, apparently belonging to relatives or neighbours. I get out of the jeep and fold the seat forward, so that Mama K can climb into the back; but this is not a good plan. She gets her head and shoulders in, but the rest of Mama K cannot pass easily through the narrow gap. She pulls her top half out again, and I climb into the back of the jeep. Augusto tells Mama K that I am the husband of Christine Miles, who came to Dar last year to give three weeks of training to the CBR workers, for working with families having a mentally retarded child. (These CBR workers had previous experience working with blind or physically disabled children and adults). I tell her that Christine sends greetings to her, and to the other course participants. Mama K is pleased to hear this, but she pretends that her English is not good, while she makes up her mind whether I am harmless or not.
0845: Visit 1. Open courtyard of three-room house, just off the main road. Here lives BA, a heavily-built 15 year old girl, with severe learning difficulties and epilepsy. Somali family, mother and younger sister present, father is out at work, two other sisters are at school. Mama K sits on a small seat, produces a few items from her bag, and tries to engage BA's interest. BA is given a pencil, and makes a few scribbles on a piece of paper, left-handed. Then she jumps up and runs off inside the house. After a few moments, Mama K goes slowly after her, and BA emerges clutching an empty plastic bottle in each hand. I sit on another small stool and take out a small folded piece of paper, on which I make a few notes in pencil. Several more activities are tried with BA. Mama K has some small, hand-drawn pictures pasted onto cardboard, but BA does not wish to concentrate on anything. She wanders about then escapes into the street. We follow quickly, as there is heavy traffic nearby. BA extends the game by sitting down on the road, and refusing to move. Nearby shopkeepers watch the scene. They are familiar with the sight of BA and her antics. Slowly, she is persuaded to re-enter the courtyard.
By now, BA has got used to my presence, so she comes up to find out what my beard is made of, what it feels like to stroke or to pull. I speak to her a little in English. Now she wants to try my spectacles, but I do not permit this. Mama K talks to BA's mother. I ask about language use. They tell me that BA can say some words in Somali, and has some understanding of simple Somali and Swahili. The parents have been in Dar es Salaam 23 years. I ask what sort of future BA's mother imagines for her. Mother wants to save money to go to South Africa, where she thinks there might be a 'cure'. Later, I learn that this mother is well known to all the local hospitals and doctors - she visits regularly to collect epilepsy medicine, and also to see if there is any other treatment available.
0950: Visit 2. During a walk of five or six minutes, Mama K tells me that she has worked with BA for about nine months, and there has been some progress with self help skills such as feeding, and some language development. We reach the second house to be visited, but there we learn that the 13 year old boy has gone to a special school, in Standard 1. We walk on, and Mama K decides it is time to ask a few questions. She finds out that I am not a priest, even though I have a big beard. She tells me that she is a Muslim, and watches to see how I react. I tell her that most of the people with whom we worked in Pakistan for 12 years were Muslims. In Britain there are about 2 million Muslims. Mama K is surprised. How do they get along in Britain? I tell her.
1010: Visit 3. After a further walk, we enter a bungalow with central corridor, apparently with more than one family living in rooms on each side. We enter a small, dimly lit room, bare walls, woven mat on floor, a little light coming through the open window. Electric light is off but a small fan is on. Sparse furniture. A boy aged 5 with cerebral palsy, severe mental retardation, no speech, some vocal sounds. (Two younger brothers are with an older woman in another room). Mama K sits on the mat and works together with the young mother, doing some positioning exercises, sitting the boy to avoid his legs scissoring, helping him to stand up and take his own weight. Mama K responds to the boy's vocal noises, repeats them back to him, encourages him. Handling of the boy seems to be friendly and gentle, apart from in one position where the child has pain from a spasm. Mama K shows the boy an orange. He tries to grasp it, and has a smell of it. The next brother, three years old, comes in a few times, and rolls about on the mat with his older brother, while the two women talk. Then a pair of small boots are put on the disabled boy's feet, and he is placed in a standing frame, items obtained from the Hospital. Mama K notices that one of the fittings on the frame is out of place. She spends some more time talking to the young mother, who is clearly pleased to have this solid, confident, experienced older woman coming to work with her disabled son.
1110: It rains as we walk. I tell Mama K that my wife, Christine, does similar work in Birmingham, visiting the homes of young children with mental handicap, working with them and their mothers. Most of her children are from poorer Asian families whose homes are scattered all over Birmingham, so Christine uses a car to get around. Some of her families don't have a phone, and some don't have european ideas of time, so quite often the family has gone out, even though the visit had been arranged at a stated time. Christine works with the kids until they go into an integrated nursery, or until they go into a special school or unit, or into a mainstream school. If they go to a nursery, she advises the staff about any special help the child needs. Christine makes detailed assessments and reports on each child's abilities and progress, advises the parents on what will be the best path for the child's education, and takes part in case conferences with other professionals involved with each child. She also does quite a lot of inservice training of other staff in health, education and welfare, so that they improve their services for children with disabilities, and also those belonging to Muslim families and Asian families. Mama K digests all this then asks what I do. I tell her that my work is to study what methods will be effective in countries with weaker socio-economic status, and to advise organisations about more appropriate development of disability services. From time to time, I need to spend a day in the field, learning from people like her. Mama K thinks about this. "So today you are getting training?" "Yes. Last year my wife was giving you training. Today you are the trainer, I am the student." Mama K smiles.
1130: Visit 4. We reach another house, where the mother is out. A boy is sent to fetch her, and we wait on the verandah. Mother comes after 10 minutes. A small girl with cerebral palsy is produced, along with a mat that is placed on the verandah. The girl is said to be aged 6, but she is very undernourished and looks hardly more than 4 years old. She has a cold and there are several very sore places on her hands and legs, which Mama K has a look at. The girl is wearing small amulets made of animal furs. Afterwards, Mama K tells me that the mother refuses to take her daughter to the hospital - she prefers traditional medicine or treatment. Mama K has been visiting the family during the past year, but the mother and child sometimes go back to their village for periods of several weeks, and during these periods the child's condition deteriorates. Now Mama K does some positioning exercises with the child, sitting on the mat on the verandah. The child howls steadily. After a little while, Mama K stops exercising, and comforts the girl so that she stops howling and merely whimpers. Mama K has some discussion with the girl's aunt, a young woman aged c. 20, who has mild left side hemiplegia. Mama K urges her to go to the hospital.
1215: Visit 5. We walk to the main road, then take a bus for a mile or two, then walk half a mile along unmetalled roads in the rain, and stop on the verandah of a locked building near the road at about 1240. Mama K goes round the corner, but learns that the mother she has come to visit is out. The older sister (aged about 8) goes off and comes back carrying 5 year old Mariam, who seems to have mild CP and some degree of learning difficulty. A mat is placed on the verandah, and Mama K sits on it with Mariam, who is pleased to see her. A dozen other children gather. During the next 40 minutes, a further 20 come and go; some adults who are walking along the road also come over to take a look, then return to their journey. While I squat amongst the audience, Mama K sits on the mat and works with Mariam. A song, and a clapping game. Some positioning and exercises - Mariam can roll over and sit herself up, with some difficulty. Some paper and a pencil for Mariam to scribble with. The pencil is blunt and does not work, but Mama K quickly notices this and finds a sharp pencil. For Mariam to scribble with the pencil, she needs physical support to her right shoulder. (She might also find it easier to hold a thick crayon, rather than a long thin pencil).
Mariam has some spoken vocabulary. Mama K brings out her picture cards and encourages Mariam to find the right picture. Perhaps the cards are too advanced - they are small, and the drawings do not stand out very clearly. It looks to me as though Mariam is picking up a card at random, rather than recognising the correct picture - still, it is an achievement just to be able to pick up a small, thin card off the mat. Older sister moves forward from time to time, to wipe Mariam's nose. Mama K does not spend too long on each activity but moves on, giving Mariam encouragement. She produces a doll, and asks Mariam questions about it. She also asks a few questions of the small children who are crowding around. Mariam wants to get the doll, so Mama K makes her stretch and reach for it. The exercise is now part of a game.
What do the other children think or learn? Well, it is free entertainment for them. They do not think that they are getting 'community education' or 'awareness raising'! Mariam must have some importance, because the big fat Mama has come specially to play with her. The older ones know that Mariam is disabled, and perhaps they realise that this is why Mama K has been visiting for the past six months. But today it is all in the open. So they see that what Mama K does with Mariam is just the same as any Mama or big sister does with a small child. When Mama K tells Mariam to put the picture cards into a little plastic bag, Mariam finds it hard to get them in. The watching children laugh loudly, they draw each other's attention to Mariam's difficulties, it is very funny. Is this the negative side of community attitudes? Or do they laugh at their own small brothers and sisters when they are too small to succeed in some simple activity? Anyway, Mariam still has the advantage of having Mama K's full attention.
1325: Visit 6. We walk for 15 minutes, through an area where Mama K is obviously well known and highly respected. She does not actually stop to talk to people who are standing in front of their houses or shops, but the greetings and exchange of news start when we are 30 yards away, and continue as we walk slowly past, until we are 30 yards further on. We leave the road for several narrow lanes between houses, down a steep muddy path, through a hedge, climb up and down, and reach the house of M., a 15-year-old girl with severe CP and mental handicap. M. sits on a special wooden chair with a tray fixed in front, in a small, dimly lit room outside the main house building. The only other furniture is a mirror running the length of the wall opposite M., who might be able to see herself in it if the electric light were on. M.'s sister shows us into this room, and gets stools for us. The window looks out onto a communal space between several houses, where a woman is cooking food on a log fire - but M.'s chair is a little too far back for her to be able to see through the window. M.'s father comes across to the small room to meet us - an alert, intelligent middle-aged man. As he leaves the house, he feels around with each foot to find his sandals, for he is blind. Mama Kitenge spends a short while working with M., getting her to hold a pencil and make some scribbles on a piece of paper. M. tries to drink some water from a cup, but finds it difficult to hold and tilt the cup, so she hardly gets any water. Mama K gives some shoulder support and pressure to try to assist grip and manipulation. Later, I learn that quite a lot of progress has been made, over some months, with M.
1400: We return to the main road by a different way, with more greetings from local people at various points. Mama K puts me on a bus that will take me back to the hotel. She still has another couple of visits to make during the afternoon.
Impressions and Reflections
During the following days in Dar, I was busy with the International Training Course for CBR Managers, so there was no opportunity for discussion with Mama Kitenge, and only a brief time to talk with Mr Zambaldo. The observations recorded above are therefore 'what I think I saw', but there would probably be changes to the record if I could ask further questions and learn more about each situation.
So far as concerns Mama K's performance, I found it impressive. I saw her working for five and a half hours in quite difficult circumstances, without a break and with no food or drink, tramping from house to house through the rain, explaining her work in English to a strange-looking foreigner, sitting on floors or verandahs with an audience ranging from three to forty people, making the best of her tiny supply of equipment, working steadily with five children, of whom three could certainly be classified as 'very difficult', and only one as 'responsive'. She was clearly a welcome and respected visitor in four of the five situations where work was seen, and equally clearly her advice was much needed in the fifth situation, even if it might be little heeded. In only one of these situations was an adult present who was clearly a 'cooperating partner' in the child's rehabilitation; but it seems there had been a reasonable level of cooperation with most of the other families. Some of this particular day's visits were probably out of the usual pattern, in order to accommodate my interest in seeing work with mentally retarded children - which may account for the absence of mothers from some houses.
(On the basis of conversations with fieldworkers last year, Christine Miles told me that in Dar es Salaam, mothers are usually not at home during the day. More often, the disabled child is cared for by an older sister or some other girl in the neighbourhood. There are many single mothers, who are obliged to go out to work. Thus one of the 'normal' expectations of 'CBR' is unlikely to be met. Fieldworkers also said that there are eight special schools for mentally retarded children in Dar es Salaam, which have expanded to cater for growing demand; but they do not enrol children with multiple disabilities. Fieldworkers seldom work with children whose problem is mental retardation only - those children are more likely to go to a special school. The multiply disabled children, having the greatest need for skilled management and teaching, are thus rejected by professional services, and left for mothers and multi-purpose fieldworker to manage.)
The confidence and ease with which Mama K worked with the children and teenagers seemed to me largely attributable to her own experience as a mother of eight, rather than to any specific training. However, on the technical side, she was clearly applying a range of physiotherapy techniques of exercise and positioning learnt during CCBRT training and through the ongoing supervision by her director. (I am not competent to judge how well the techniques were being applied, but they were clearly recognisable as techniques which a capable but untrained mother would not have known). So far as concerns the technical side of teaching children with learning difficulties, the CCBRT training 18 months earlier had been brief, and there had been comparatively little follow-up. My impression was that some of the tasks offered to the children were not really appropriate to their developmental level - especially as all but one of the children combined mental retardation and cerebral palsy - and I do not recall any use of checklists as a guideline for appropriate tasks aiming towards the 'next step' in any branch of a developmental curriculum.
This is not intended as a criticism of Mama K, or the CBR Program. There are many 'trained teachers' in special schools around the world who still have only the vaguest idea of what learning targets they intend their pupils to meet, or of analysing such targets into appropriate small tasks, or of recording progress, or of diversifying their approach in order to get around unexpected blockages. To practice such skills while taking into account the additional difficulties caused by cerebral palsy would be an advanced professional accomplishment, which cannot be expected of a CBR field worker with a few weeks' training, even if she is herself an experienced mother and has competent support and supervision.
However, part of the purpose of observing the fieldwork is to continue reflecting on the frontline realities of CBR where mental retardation and multiple disabilities are concerned. For a start, extremely little is formally known and documented about what Tanzanian families in poor urban situations (or families in any other country or place) actually do, in the morning, afternoon, evening or night, with their disabled children within the four walls of their home. Next: what can realistically be expected from the competent and willing fieldworker? What can the fieldworker reasonably expect to share with the mother or other carer, which that person will actually continue to practice between one visit and the next? What sort of ongoing training and supportive materials are required? What is the 'standard all-purpose pack' of equipment the fieldworker should carry, and what should be in the 'toy library' from which particular items can be borrowed for particular children at the appropriate time? What small reinforcing rewards are appropriate to use or to suggest, in households suffering extreme financial poverty; or where these seems to be emotional poverty, or other grossly complicating factors? What guidelines should be offered to fieldworkers for language development work, and how should these vary in the not uncommon situation where the mother's first language is not the main language of the neighbourhood? These and many more searching questions need to be experimented with in far more local cultures and local CBR programs, until sufficient documented experience builds up and more reliable responses can be generalised.
In our brief discussion after the field trip, Mr Zambaldo showed his keen interest in moving forward and developing further support for his fieldworkers where mental retardation and multiple disabilities are concerned. He indicated some steps that had already been tried, and others that he hopes to implement as the program develops. I also received one of the few available photocopies of the newly translated Swahili version of Christine Miles's manual for teaching mentally retarded children, which should be printed and distributed more widely during the coming year. This at least will provide a reference book in a language, and at a level, designed to be appropriate for all Tanzanian CBR fieldworkers. It may also be feasible to photocopy short sections or specific pages, for families whose child has a particular problem for which that section is relevant.
It remains for me to acknowledge the kind assistance of Mama Kitenge, Augusto Zambaldo, Geert Vanneste, CCBRT Director, and the Christoffel Blindenmission under whose auspices the CBR and training programme are running.