Notes from the CBR Front Lines

By M. Miles (m99miles@hotmail.com)

Home Visits with ART-CBR, Dar es Salaam, Tanzania, March 2000

Arrive 0810 at ART-CBR's small office, carrying a plastic water bottle and mini umbrella. Some fieldworkers in their smart blue blouses are already dispersing with the Management Workshop participant allotted to them. The director, Augusto Zambaldo, introduces me by name to the remaining women, then remembers that my real identity is "husband of Christine". This gets welcoming smiles from those who took part three years ago in Christine's training exercise on fieldwork in families having a child with mental retardation. In Kiswahili one of the women cheerfully suggests that I should hide my beard otherwise I will frighten away all the children. The other women applaud this idea. Someone translates the joke for me, so I tuck the beard into the top of my shirt to let them know I accept their advice.

0815. Leave with Mrs Idda, a woman of 30/35 who tells me she has worked for five years in Community Based Rehabilitation. She claims to have only "broken English", but it is good enough for her to explain things to me. We walk, take a bus a few miles, then another bus several miles to the outskirts of Dar es Salaam, an area where Idda herself lives. Walk for another 15 minutes on rough tracks amidst a mixture of well-built, ornamented 6-room bungalows and other smaller dwellings of breeze-blocks with corrugated iron roof. Along the way, Idda greets various people walking or sitting outside their houses. Temperature is already above 30 C. and very humid; some clouds save us from being always in direct sunshine.

Maggy

0900. First visit, to see 4-year-old Maggy with her mother, a cheerful young woman aged 25 with two other children. Four or five neighbouring children gather in the sandy space outside the small house. Maggy's father is out at his work as a carpenter. Two flat stools are brought for Idda and me, and Maggy is fetched out of the house. She has a bread bun in her hand, which she drops. Older sister picks it up, brushes some of the sand away, and nibbles at it. Maggy sits in her
mother's lap, looks sleepy and unhappy, not in a mood to play. Mother and Idda set to work to get Maggy's attention and focus her on some activities. From her bag Idda produces a box of jigsaw puzzles with large pieces. She half inflates a yellow balloon. The other kids close in and try to get involved, but Maggy's mother has not heard of `reverse inclusion' and she shoos them away a little. They slowly creep forward again. I retreat a few yards to the shade of a small tree out of Maggy's line of sight, and start to make notes on a palm-sized pad.

The two women continue the usual mother things, calling Maggy's name, coaxing her to take an interest in the balloon, then to take jigsaw pieces out of the box. Idda tries to get Maggy to take a little walk, but she is unsteady on her legs and refuses to take steps. The women coo and sing to her, it sounds like "Maggy kaweesa", lots of encouragement, and Maggy slowly becomes more responsive, not using words but making some sounds. The other kids have understood that they should applaud every time Maggy takes some pieces of jigsaw out of the box; but the little two-year-old can't work out the rules of this game. Some fat hens scuttle across the sandy yard past the clothes drying on a line, to a small cultivated patch. A child in the next house howls for a few minutes and eventually is led away by older children. Now Maggy has woken up properly, and manages to walk a few steps with help. She is also able to pick up flat jigsaw pieces and put them back in the box. The hour has passed quickly. The women talk briefly, then Maggy's mother produces the visit registration sheet which she and Idda both sign. We take our leave, and walk on for five minutes.

Mimi

1015. An unscheduled visit to a new child, Mimi, at her uncle's bungalow. We have taken directions from some neighbours. Mimi, aged about 8, is lying on the verandah where uncle is doing exercises on her foot. Her left arm and both legs seem rather limp and crossed, the right arm is okay. Mimi complains bitterly - the exercises have gone on too long, she is only supposed to have 15 minutes of suffering... Idda introduces us and talks with uncle, who makes us welcome. We sit by the verandah and Idda takes the child's history in a notebook with Snoopy on the cover. Various people come and go, an older woman sits and listens closely; the radio in the house pours forth music. Idda is using Kiswahili but I hear medical terms in English and know that she is explaining a little about cerebral palsy and exercises, using Mimi's leg and hand to show what she means. Mimi slumps in a sullen heap while her case is discussed. After half an hour we are set to leave, but I am uneasy and ask permission for one question: has Mimi's disability affected her brain and understanding? This is translated, and Mimi's relatives are happy to say no. Her brain is fine. She speaks, she understands everything! I suggest that this is an important feature of Mimi's 'case' - looking at her abilities, as well as her disabilities. After translation, the relatives smile and agree. As we walk on for another 20 minutes, Idda fills in complicated background details. I retain only that the family has had contact with a centre-based organisation, which told them something about doing exercises.

Anna

1120. We visit Anna, aged 6 years, only child of a small, thin, ill-clad woman living in a very poor-looking shack. Husband is out on a temporary labouring job. We sit on rickety stools on the uneven slope outside the shack. Walking unsteadily Anna heads straight towards me, showing no fear; but she makes very little eye contact and shows almost no awareness of people, things or sounds. Idda tickles the sole of Anna's bare foot, but gets no response. There is an open sore of 1 cm. diameter on Anna's other foot, with flies crawling on it throughout our visit. Idda tells me that they think Anna is deaf but have not yet been able to arrange a hearing test at the hospital. Idda half inflates a red balloon and Anna sucks on it. It's a long time since I saw a child looking so vacant. Idda produces jigsaw pieces, which Anna puts in her mouth. Both women try to discourage this, which surprises me as Anna is clearly at a stage where she investigates everything orally. Then I see Anna scooping some earth into her mouth, and the women's reaction makes sense. While Anna squats nearby I get the red balloon and scratch it, making squealing noises to one side of her head. I detect no eye movement, even when I scratch too hard and the balloon bursts. Idda tells me that Anna was walking at about three and a half years and she makes some sounds but has no speech. She sometimes has epileptic fits. Prospects for Anna don't look too good. Idda talks with the mother. After a while we move on.

JS

1200. Now we visit JS, an alert, nervous kid with huge, hydrocephalic head, sitting under a tree on a steep gradient outside a group of dwellings. JS begins chattering as soon as she sees us. From her thin little body I think she is 7 or 8, but Idda tells me she is 15. Later I am told that `she' is actually a boy, but that this is not widely known. Several women and children come out to see us, but JS's mother is not at home. We try to help JS up onto a stool, during which I realise that he has very little control of his legs. An old mat is brought out as a working area. JS decides that I must be a teacher come to teach him to read and write. He tries out his few English phrases. I ask his name and he produces a long string of names, to the amusement of the bystanders. It is explained that he has given his own name, his mother's name, his father's name, and some other details. He seems to have a repertoire of parrot phrases and tricks to amuse the neighbours and hold their attention. JS insists he wants to do school work. Idda gets out a piece of paper and balances it on the back of the jigsaw puzzle box. JS grips a ballpoint pen awkwardly and gets the point onto the paper, but it is uneven and the ballpoint too slippery and his hand wavers about rapidly and can make only a thin scribble. The watching women and children scream with laughter, which JS does not enjoy. Idda holds JS's hand to write some capital 'J's. The small children gesture to each other, mimicking JS's wavering hand and having further bursts of glee. The tougher side of rehabilitation 'in the community'.

Idda moves on to try some positioning and physical exercises. These too are hard to perform on the uneven, sloping ground, and JS is exposed again to people's laughter. Idda tries out a few more activities with JS balanced awkwardly on the stool. Finally the impulse to interfere gets the better of me. I noticed that JS has some grip and arm strength so I produce my cheap telescoping umbrella and show it to him. He grasps it. Together Idda and I show him that the handle pulls out and the folds of fabric can be shaken loose. We begin to open the umbrella a little and JS is fascinated to see the double array of metal spokes inside. He gets the idea of pushing the mechanism up the shaft, causing the spokes to unfold and the umbrella magically to open up. Now he is inside the umbrella, pushing it open. Near the top, more force is needed. He is excited, he pushes hard. He nearly completes the opening, then gets stuck. I get under it too, and together we push until it clicks. JS's eyes gleam. He peers intently around the little world of skilful design that he has discovered inside the umbrella.

Now JS's mother shows up and talks briefly with Idda. It's nearly 1300 and we walk onward, back towards the main road. Sun is very hot now and Idda asks if I'm tired, which I am. She has three more visits to make in another area. As we walk, a car overtakes us belonging to a community development scheme. The occupants know Idda, and offer us a lift to the road. They are heading into the city, so I thank Idda, take leave of her, and get a ride several miles further, before taking a bus back to base.

Reflection

This is the second time I've spent a morning with a member of the ART-CBR team, and once again I'm much impressed by the resourcefulness, stamina and good cheer of the fieldworkers. A useful reminder of the realities and varieties of home visiting in the rapidly growing suburbs of a big African city. The following day the CBR Management Workshop participants have a feedback session with Augusto and other senior team members. While taking up some technical points about activities, skills and equipment, as hinted above, I emphasize that I'm impressed by Mrs Iddi's work. Most of what she did looked good to me, given the circumstances, tools and training available to her, and the added pressure of having an observer making notes. Of the four visits, two would have presented a major challenge even to an experienced professional therapist or teacher. It was never envisaged that CBR fieldworkers with a few weeks training, a bag of toys and some ongoing professional support should work a transformation in children with severe and multiple disabilities living in situations of severe economic deprivation. Visits to such children have more to do with keeping their mothers from despair, and linking families with existing institutional resources. I have no doubt at all that the regular visits by Mrs Iddi and her team colleagues achieve this and far more.

Changes since 1980

I'm reminded too of some of the changes since the early 1980s when the early WHO CBR model was gathering pace. Then, the biggest third world childhood physical problem was polio and a fair amount could be done about prevention, or home treatment following paralysis. With a very modest level of skill, enough results could be obtained to justify the whole scheme, which was packaged with a lot of trendy features to give it donor appeal. Lots of 'brave' little kids were photographed struggling along badly placed bamboo parallel bars, to give a warm feeling that 'something was being done'. But now fresh polio has been substantially reduced across Africa. With improved child survival the cerebral palsies are showing up strongly, with increasing epilepsy and other complex conditions which depress children's learning abilities. Input and results here are slow, difficult, hard to measure, and bad news for fund-raising. It's easier for aid agencies to prioritise quick returns with emergency aid, simple eye surgery, and AIDS programmes. Yet the more difficult childhood conditions are very likely to increase rather than go away. More of these children will need to be cared for in families already burdened or fragmented by AIDS, or even in orphanages.

There is an urgent case for building on the strengths of Mrs Iddi and her front-line colleagues, offering more detailed training, more professional field support and better equipment, more recognition, and using their experience to extend such schemes much more widely. The knowledge and skills of these community rehabilitation fieldworkers are going to be in greater demand in the future, as they support the existing informal resources of disabled people, families, neighbours and local communities.
 

With cordial thanks to Augusto Zambaldo and the ART-CBR workers, to Geert Vanneste, Director, CCBRT Tanzania, and to Christoffel Blinden Mission which funds the work.