Recognising the darkness
The northern region of Malawi, with its capital city Mzuzu, has 1.5m of the country’s population of 12 million. It is the least developed region of the country with many villages isolated in mountainous terrain, nearly impossible to access for the six months of the year when tropical rains turn mud roads into rivers and create hazardous travel for all but four-wheel drive vehicles. While 86 per cent of the population live in rural areas, engaged in subsistence farming, 75 per cent of essential services, including healthcare, are found in urban areas (1998 census figures).
Malawi is one of the poorest countries in the world. Ninety per cent of the population live below the poverty line; malnutrition is endemic. Fifty per cent of children under five are chronically malnourished; only 47 per cent have access to safe water. Owing to the HIV-AIDS epidemic, it is conservatively estimated that over 1m people (mainly those between the ages of 15 and 35) are HIV-positive. Life expectancy has fallen from 45 to 35, and nearly 44 per cent of the Malawian population is under 15 years of age.
Ever increasing numbers of children face a vulnerable life bereft of parental support or in a family without resources. Many have experienced the trauma of both parents dying within a short period. The traditional African extended family support system is unable to cope under such pressure—people have difficulty coping with the continuous process of grieving, and of striving to extend their family to accommodate orphans. Grief, pushed to the background, creates its own psychological, emotional and physical health problems.
Given this bleak scenario, any form of disability can add considerably to the vulnerability of a child and his/her family. A high percentage of infants with a disability do not survive the first year of life. 23 per cent of children die before they reach five years of age, mainly from malnutrition, anaemia, pneumonia and diarrhoeal diseases. When seeking essential services—which are rarely to be found—a mother has to carry a disabled child on her back, the traditional way of carrying infants. (In this part of Africa fathers do not have a role in the rearing of young children.) Limited access to essential health services, and the absence of specialised medical, rehabilitation and educational services, within the region are greatly exacerbated by community attitudes, ignorance, superstition, traditional beliefs, traditional medicine and the chronic apathy which is directly related to disempowerment associated with long-term poverty and poor health.
Lighting the lamp
In 1994 the Irish Brothers of St John of God established the St John of God Mental Health Services in Mzuzu—community-based services under the auspices of the Catholic Diocese of Mzuzu and the Christian Health Association of Malawi (CHAM). This was first service of its kind in Malawi and it quickly brought the brothers and their co-workers into direct contact with the plight of mothers of children with severe disabilities.
The St John of God Brothers carried out an initial feasibility study in partnership with the Traditional Authority and the community of Chibavi township, the largest in Mzuzu City. The study identified families with a disabled child, assisted in the classification of disabilities and, most importantly, raised considerable community interest and enthusiasm. When it received the study findings, the Traditional Authority quickly negotiated with the St John of God Services for the setting-up of a Community Based Rehabilitation programme (CBR). To be successful, CBR requires the community, empowered by education, to be involved in all stages of planning, service delivery and evaluation. The Chibavi community made accommodation available, chose volunteers to undergo basic training, and set the target date for commencement of the programme. The St John of God Services trained the volunteers, assessed the rehabilitation needs of each child and their family, provided education to groups whom the community had identified as having a significant influence on attitudes—church leaders, traditional leader, teachers and the mothers of the children concerned.
An African cooking pot symbolises the family; it is said that it must rest on three fire-stones if it is to function. Well-trained, motivated and supported volunteers are one such stone; parental commitment and cooperation are the second; and the clinical expertise of St John of God personnel is the third—together they keep the CBR ‘pot’ balanced so that it can be energised to provide sustenance for families.
As in other parts of Africa, Malawi has a very high incidence of epilepsy—mostly uncontrolled. Shrouded in ignorance, fear, superstition and shame, epilepsy is inadequately diagnosed, poorly treated and, in most cases, referred only to traditional healers for traditional remedies. Epidemiological studies have been impossible because of the lack of meaningful statistics and medical histories. However, the poor general standard of health in rural areas, poor prenatal healthcare, malnutrition during pregnancy (56 per cent of pregnant women at antenatal clinics are anaemic), inadequately-trained birth attendants, complications during birth—all these may well contribute to the high incidence of the disease. Cerebral malaria, childhood infections and prolonged dehydration may be other factors.
The Community-Based Rehabilitation team visits the township twice a week. Clinic team members also make follow-up home visits and monitor the work of volunteers. One day a week, programmes are provided for children with a learning disability by the clinical team, volunteers and the mothers—who are central to all interventions and strategies. Volunteers support them in providing a daily treatment plan at home. As well as being a place where their child with a disability is nurtured and cherished, the clinics provide regular social interaction and peer support for the mothers. The therapeutic benefit of this can be seen in their improved self-esteem, personal appearance and coping skills.
The second weekly CBR visit is for the registration, treatment and monitoring of children with epilepsy. Traditional beliefs and cultural superstitions are discussed—they are deeply held and need to be acknowledged by all concerned. Volunteers play a vital role in judicious advocacy, particularly with school authorities and teachers. Their better understanding of epilepsy and its management has enabled the return to school of all the children treated at the clinic.
Spreading the light
The success of the Chibavi venture quickly led to further requests, and St John of God Community Services now runs CBR clinics and children’s programmes in partnership with three other townships in Mzuzu. Although each of the clinics has a similar structure and programmes for similar disabilities, the uniqueness of each community is reflected in the ethos of each clinic—with its strengths and weaknesses. The support and involvement of the Traditional Authority remains vital to the development and sustainability of the CBR programme.
The CBR initiative has also led to a request for a day centre in Mzuzu City which can be easily accessed by families in need of multiple rehabilitation services, where children and their mothers can receive intensive education, training and treatment on a daily basis. It is envisaged that volunteers will again play an important role in the day-to-day running of the centre, extending their training and development in their role as community facilitators. The rehabilitation and educational needs of older children and young people with a learning disability cannot be adequately provided for by existing CBR programmes—it may be possible to cater for that group at the new centre.
St John of God Community Services are committed to develop the day centre for children and young people with a learning disability during 2001. This will be made possible when the present drop-in centre moves into new purpose-built premises. At present, some young people with mild learning disabilities have been integrated into existing vocational programmes for adults in horticulture, woodcraft, textiles and tailoring and home management. Integrated work-teams carry out professional landscaping, garden restoration and maintenance on contract for public and private clients (including the landscaping of the new Mzuzu Central Hospital).
Perhaps the most disadvantaged group in Mzuzu is the growing number of street children, mainly boys aged 7 to 15 without family support. As part of our commitment to children with special needs, and in conjunction with other interested community groups, we are carrying out a feasibility study on how best to advocate effectively on their behalf with government departments, children’s agencies, civil authorities, church and community groups.
Robert Solomon, pastoral theologian and medical doctor, describes community as a circle of love which can be redrawn to include others. The challenge today, across cultures, is to empower the community to redraw the circles of love so that whoever is excluded and marginalised—by sickness, disability or whatever—can be invited into God’s circle of love.