From the CBR Front Line in Tanzania: Chances for Children of Rural Moshi
By M. Miles ( m99miles@hotmail.com)
Monday morning, 18 June. CBR Management Course participants are set down two by two at various points outside Moshi in North-East Tanzania, where jeep tracks leave the road to lead up the lower slopes of Kilimanjaro. This year my co-visitor on the field day is Merci Kimani who works in Nairobi at the East Africa office of Christoffel Blindenmission. Like the other Kenyans who have crossed the border to take part in the course, Merci knows Kiswahili and can translate for me. As we leave the vehicle Flora Mrema meets us, one of seven community rehabilitation workers who visit families having disabled children in the rural programme run by CCBRT (Comprehensive Community Based Rehabilitation Tanzania). Flora is a cheerful young woman of medium build, neatly braided hair, in a patterned purple dress, carrying a leather bag of small toys and equipment. During the morning we learn that she has two children in school and a toddler who is with a neighbour while Flora works.
It's 0930 and already warm but Kilimanjaro is hidden in clouds. The three of us set off at a moderate pace up the broad track. The area had heavy rain the previous week, but this track is not too muddy. Flora asks Merci whether the foreign greybeard will be capable of walking some distance...? She has arranged three visits that will not take us too far from the road. We walk steadily uphill for 25 minutes, passing fields of maize and other crops. At one point four or five local people are clearing the drainage gully to one side of the track, apparently a voluntary effort for their community. We turn off on a footpath and reach a small dwelling amidst the trees, three solid rooms with corrugated iron roof, some small sheds, and a half-built extension of breeze blocks. Clothes are drying on a line inside one room. Hens scuttle about between the wooden stools that are brought outside for us.
Survivor
Here lives RH with his grandmother. His parents are 400 miles away working in Dar es Salaam, the vast conurbation on the east coast. RH was born with spina bifida. Now three years old, he has already survived tuberculosis and epilepsy. We learn that his parents took him to hospitals and specialists in Dar but found very little practical help. They brought RH back to the cooler climate of this rural area to live with his grandmother, and he was then found by the CCBRT rural programme based at Moshi. So this little boy has more help out here in the countryside than he found in the big city. RH is clearly pleased to see Flora, and so is his grandmother. RH also doesn't mind seeing Merci, but he isn't so sure about me. The women get busy around him. Small wooden bricks are produced from Flora's bag. RH picks one up in his left hand and bangs it on the tin tray in front of him, producing a satisfactory noise. Then he begins throwing bricks vigorously in all directions, using his left hand. Wearing a multicoloured woolly and long striped pants, he is sitting in a specially shaped wooden chair with some sponge padding to protect the small 'bag' of nerves protruding near the base of his spine. His eyes gleam as he sees that he can make three grown-ups jump around picking up the bricks.
Flora tells us that RH could not walk six months ago but now is making some progress. Both his hands used to be okay but after a severe fit last year he stopped using his right arm. That was shortly before he got onto the list of families she visits. The epileptic fits are now well controlled by daily medication. Flora and Grandma are trying to get RH to make some use of his right hand. He can still grip things with it but does not like to do so. Flora picks him up and does some exercise on his legs, making him squat and take some weight on his feet. RH is not very happy with this, but Flora sings a little song to him so the exercise is almost a game. Grandma calls to RH, encouraging him, reflecting back the sounds he makes. Merci joins in. The exercises go on for a few minutes. Grandma tells us, via Flora, that it's a pity there are no other young children in the household with whom RH could play.
Now Grandma brings a solid table and places against it a narrow wooden standing frame made by a local carpenter to a CCBRT design. The frame has a little platform for RH to stand on and there is sponge padding covered with grey plastic so that he can take his weight and lean forward to work with his arms and hands at table activities. Grandma secures the frame to the table with a cloth tie-up. Flora places RH on the frame and stabilises him by wrapping a long cloth around him and the frame. Now the women notice that the platform needs to be adjusted because RH's legs are bent and this makes it hard for him to take his weight. They don't succeed in pulling out the wooden peg that is holding the platform, so Grandma goes and fetches a large pair of pliers. She stands quietly by the table, smiling with serene eyes and broad unlined brow at the two young women - one who belongs to the area and visits her grandson, the other who lives in the next country and works in an office processing applications and grants for programmes throughout the region.
Flora uses the pliers to hammer the peg out, moves the platform down a notch or two, then secures it again. Little RH isn't happy about the banging and adjustment going on while he is actually standing on the frame, but at least when it's over he can straighten his legs and get his feet flat on the platform. The table play activities proceed for a while. Grandma produces the visit record sheets in a plastic folder, and some notes are made on them. It is time to take our leave. While Flora collects the wooden bricks, RH is happily banging on the tin tray again, a survivor against heavy odds. [1]
Persuasion
Back on the track at 1050, we walk for 20 minutes past women with baskets of fish on their heads, past a Lutheran Church to which an extension is being added, past a school that is still open though the vacation has begun. Children here are getting extra tuition for some reason. Off the track again, we reach the home of AR, a five year old boy with cerebral palsy and epilepsy. The family had earlier shopped around the traditional healers without success. Then Flora persuaded them to attend the hospital in town and to start exercises and to administer the prescribed medication for epilepsy control. After a while, seeing no cure, the family gave up both. Flora encouraged them to start again, but she tells us that it's hard work to sustain family interest. When we arrive, we find that mother is out doing farm work while AR is being cared for by his sister aged about 12, now on her school vacation. Flora is well known in the family and this sister is clearly glad to see her. Through Merci, Flora assures me that the girl will not be worried about a foreigner quietly watching and writing notes.
Looked at clinically, AR has very thin limbs, floppy hands, scissoring legs, little head control and is dribbling saliva. He is the youngest of six children. We are in a small room sparsely furnished with a few wooden chairs and a table. Flora settles down with AR and tries some physical exercises, using an old plastic sack and a folded blanket to cover the floor. AR starts crying; Flora encourages him. Sister bring a small rattle. Flora sings, shakes the rattle, and manages to cheer up the small boy. Sister sits behind AR supporting his head while Flora does some exercises with his arms. Then she works to get him to spread his knees, against the scissoring tendency of his legs. AR needs the toilet, so his sister takes him out. AR's older brother, aged 13, joins us in the room, polite and self-possessed in the unexpected presence of two guests from abroad.
Sister returns carrying AR and makes up some porridge for him, using hot water. She starts giving him some on a spoon, but he begins to cry and has to be comforted. There are obviously problems with feeding since AR has little head or mouth control. Sister again spoons a little porridge into his mouth, but he does not seem to swallow. She adjusts his head forward a little, presumably so that he will not choke on the porridge. Is that the problem, or is the porridge perhaps too hot? What sources of advice does AR's sister have in the intervals between Flora's visits? Her mother is out just now, collecting feed for the cattle. Father is working in town. Grandmother is nearby, but has other children to look after. A little while later, we move on.
Culture
After walking downhill for half an hour we cross the main road and continue some distance on the other side to visit a family whose many members are busy with farm activities. Here Flora works with a child having severe learning difficulties and some physical anomalies. This is an interesting visit, but to preserve the family's privacy not too much can be recorded. Most of Flora's work with the child I observe from the corner of my eye while talking to the father, who has been sorting out piles of paddy that he has grown in fields nearby. He is an educated man and we chat in English about disability in African histories. He mentions an African boy from centuries earlier, whose name he cannot recall, who was physically disabled but grew up to be a warrior and leader. With some surprise I realise that this must be Sunjata [2], whose history belongs to the Mande area 3500 miles away between Mali and Guinea. The father confirms that this was the boy he was thinking of. The time passes quickly with this unexpected cultural exchange, and it is 1300 when we take leave and return to the main road. Merci and I thank Flora warmly for the insights we have gained into her daily work. Next day we talk it over with the CCBRT technical supervisors, who provide specialist back-up for the front-line workers.
Reflection
Last year my CCBRT rural field day was a visit to a young man doing eye work near Moshi, mainly with elderly folk having cataracts [3]. It's all 'CBR', but both the actual work in people's homes and the possibilities for community education and involvement are substantially different. For cataracts, a highly effective 'technical fix' is available at modest cost, and people who have been practically blind can regain good eyesight even in old age. On the other hand, for the young children with severe and multiple impairments seen during the present visit, the prospects would be far from brilliant in any part of the world, even with modern surgery, gadgets, adaptations and financial supports.
In Tanzania, the prospects for most children with severe disabilities in rural families with modest means are extremely poor. Nevertheless, there has been some turn-around in this Chaga tribal area around Moshi. Up to 50 years ago it is uncertain that any of the children described above would have been allowed to survive, or would have received sufficient care to survive. Curiously enough, as HIV/AIDS now decimates the young and middle-aged Tanzanian population, these three severely disabled children may have a longer life expectancy than at least three million able-bodied Tanzanian adults. More of such children are also likely to be cared for by grandparents back in the villages, as the middle generation increasingly seeks work in the urban areas but is also more likely to die with AIDS. Practically none of these factors could be taken into account by health, education and welfare planners 15 to 20 years ago, in the early days of CBR expansion. Other social and economic twists and turns are already building up that will affect the lives of the present disabled children in 10 or 20 years' time, usually without the present planners perceiving them in advance.
So what are the implications for the training and orientation of CBR managers now? What sort of managers will the participants in this course be when they are back home? Will they be mainly "Christmas trees", as CCBRT Director Geert Vanneste caustically puts it [4], i.e. purely decorative, firmly planted indoors, no real roots, appearing only for festivities? Will they be ideological extremists, spending their efforts on the furthest, poorest and most difficult targets, to the neglect of everything that is lying around within easy reach? Will they be opportunists who do whatever the money tells them to do, dancing to every new foreign aid tune whether or not it is appropriate to their country? Will they be people who steer a moderate course between these extremes, knowing that they may not change the world but they can enlist and manage local resources that will make a real difference to some African communities? How best shall we support them and their workers at the CBR front line?
With acknowledgements to the CCBRT management, to Christoffel Blindenmission, and to the decent, hard-working, good-humoured African CBR managers and trainees who have participated in successive CCBRT management courses.
In mid August sad news was received of the untimely death of Mr Edwin Ontiri, a participant in the CBR Management Course at Moshi and Dar es Salaam, June 2001. Edwin was already battling cancer at the time, but that did not prevent him from joining in energetically. During the course he was noticeable for serious and thoughtful contributions, based on an evidently deep commitment to disabled people among the slum-dwellers around Nairobi, in the CBR programme of the Association for the Physically Disabled of Kenya. His death before the age of thirty is a loss to the whole community. His achievements as a compassionate development worker will continue in the lives of people who were inspired by his dedicated service.
Notes
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An international conference "Against All Odds. Hydrocephalus and Spina Bifida in developing countries" will be held at Dar es Salaam, Tanzania, on 28-29 September 2001. Details at: http://www.ifglobal.org/daressalaam/againstallodds.htm
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http://www.disabilityworld.org/03-04_01/resources/bookreviews.htm
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http://www.disabilityworld.org/Aug-Sept2000/International/CBR.htm.
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Geert Vanneste [1995] Daily Management of CBR Fieldworkers and Supervisors. Dar es Salaam, p. 44.
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