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Key issues : Refugees/conflict/emergencies
War, combined with poverty and recurrent drought, has increased the incidence of impairment, leading to disability in children in Mozambique. Prevalence, however, is unlikely to have increased, because disabled children, as one of society's most vulnerable groups, have had little chance of survival in the harsh conditions arising from the war. Lack of treatment, starvation and simply not being able to flee in the face of an attack are some of the reasons for disabled children not surviving. Scarce resources and negligible specialist facilities mean that the majority of disabled children have no access to adequate health care or educational facilities. Mozambique's ministry of social action has embarked upon an innovative training course for social workers. The main thrusts of the programme are to challenge negative social attitudes towards disability and to provide simple, but appropriate, rehabilitative care for disabled children in their homes.
Disability can be seen as a social issue rather than an individual one. Problems experienced by disabled children in developing countries are related to the fundamental issues of all development programmes; poverty, ignorance and injustice. Yet the needs and rights of disabled children are rarely prioritised in development work. (Stubbs, S. 1993)
It is estimated that 4.5% of people in developing countries have moderate or severe impairments. (Helander, E. 1993). Causes of disability related to underdevelopment and poverty range from malnutrition, vitamin deficiency and the spread of infectious diseases to problems in pregnancy and childbirth and a general lack of resources, particularly in the health and education sectors.
However, although poverty is certain to be accompanied by an increase in the incidence of impairments, it does not necessarily mean an increase in prevalence of impairment leading to disability. (Finkelstein, V. and Zinkin, P. 1991). Lack of recognition of disability in very young children and the early death of disabled children are some of the factors accounting for lower prevalence rates in developing countries.
A stark example of this is the huge difference in life expectancy between White and Black people with spinal injuries in South Africa. Blacks are more likely to die from bed sores and kidney infections because of their poor living conditions. (Coleridge, P 1993). Indeed, medical technology, ageing and industrialisation are some of the reasons for the higher prevalence rates of disability in economically developed countries, where prevalence has been estimated at 7.7% (Helander, E. 1993)
Background to Mozambique
In 1992 Mozambique was
judged by the United Nations to be the world's poorest country and 1993
statistics show it alongside Angola as having the highest infant mortality rate
in the world (UNICEF 1993: 0-1 years = 170-220 per 1000). Estimates of absolute
poverty levels range from 60-80% (Green, R. 1991). The situation has been
further exacerbated by three decades of almost continuous warfare and by the
International Monetary Fund(IMF)'s economic readjustment programme which
started in 1987.
Little effort was made by the Portuguese to develop an economic infrastructure and only 'assimilados' had access to education. Assimilados constituted 1% of Mozambicans who passed tests to become Portuguese citizens. At Independence, in 1974, almost 95% of the population were illiterate in Portuguese, the official language of Mozambique. (UNICEF 1993)
The newly independent Frelimo government embarked upon a radical programme of social transformation, formally declaring itself a Marxist-Leninist vanguard party in 1977. By 1982, the proportion of the national budget spent on health was higher than any other country in the world. Primary school enrolments tripled and illiteracy dropped. However, advances made in those early years, though highly impressive, have largely been lost.
An estimated 1 million people have died as a result of the war of destabilisation fought by Renamo. More than a million fled the country as refugees and between 3 and 5 million people have been displaced within Mozambique (UNICEF 1993). By 1990 more than 1000 health centres had been destroyed, amounting to one third of the country's primary health network. Almost 3000 primary schools, or 40% of the total, were also destroyed. In the same year, 40-45% of Mozambique's budget was spent on defence (Da Silva 1991).
Disabled children and war
Disabled children are
powerless. They rarely feature in reports and are conspicuous by their absence.
Little is known of their experiences; rather a series of assumptions are
made.
It is often said that disabled children are neglected or simply not fed, particularly in impoverished and conflict situations. However, parents with no access to appropriate advice about how to care for children with severe disabilities, and with the further problems of living in a war situation, find it difficult to ensure that their children do survive. The authors know of five babies born with cerebral palsy, at around the same time in Mocuba, Mozambique, four years later only one had survived, and his mother was literate and his father a health worker.
Anecdotal evidence exists, however, from SCF-supported projects in the refugee camps and settlements in Swaziland and the South African homelands, where rehabilitation staff work with disabled Mozambican refugees. These include both adults and children, some of whom were born with disabilities and others who were injured in the fighting. They have been carried extremely long distances to safety by relatives. This challenges the assumption that disabled children are left behind in war situations.
Interventions in most conflict situations tend to be focused on the impairments of individual disabled people, people with mine injuries and post polio paralysis being the main target groups. Vertical programmes which provide orthopaedic and prosthetic skills and equipment, while an essential part of a medical rehabilitation service, do not address the wider issues of disability. Handicap International(HI) realised the limitation of their prosthetics work in Mozambique and introduced a programme of social reintegration in Inhambane. (Torres, P. 1991).
Data
Although data is scarce, it can be reasoned
with fair certainty that the war has contributed to an increase in the
incidence of impairment, both directly and indirectly. Prevalence, though, is
unlikely to be higher, especially among children, because of the harsh
conditions brought about by the war. (Finkelstein, V. and Zinkin, P. 1991). If
data is required, prevalence rates can be estimated based on survey results
from a variety of developing countries and on what is known about patterns of
disability worldwide, adjustments being made for the specific conditions of war
and underdevelopment in Mo zambique. (Miles, S. and Saunders, C.).
It is more ethical and more useful to disabled people to collect data once reliable services have been established, and not through an isolated survey. However, current services are overstretched and do not reach the majority of disabled children. Health services reach only 30% of the population. Schools are overcrowded, able to cater only for approximately 40% of school age children. Specialist resources are scarce and located primarily in Maputo and to a limited extent in provincial capitals.
When the Community Based Support programme has been fully established, it will provide a reliable source for service-related data collection.
Social policy in Mozambique
It has been the
policy of the government to develop community centred policies adapted to the
needs of children, thus reversing the colonial policy of institutionalisation.
In social policy and planning there has been a strong focus on the needs of
children and child welfare is seen as an integral part of community
development. (Kanji, N.)
Social Action was a department in the Ministry of Health until 1990 when SEAS, the Secretariat of State for Social Action, was created in its own right, charged with the care of particularly vulnerable groups in Mozambique. Children separated from their families, children living on the streets or in institutions and orphaned or disabled children are the main groups of children classified as vulnerable, or in difficult circumstances.
SEAS is developing clearly stated policies in the area of child-care based on principles of community participation, sustainability, community based care rather than residential care and the involvement of NGOs to provide a 'voice' for children. It is in line with these principles that the concept of Community Based Support (CBS) for disabled children has been conceived.
Community Based Support for disabled children
At
Independence Mozambique inherited a number of institutions for disabled and
elderly people and four special schools. SEAS has responsibility for the
overall supervision of these centres. In 1991 SEAS had a radical rethinking of
its disability work and began the process of developing a national policy based
on the community centred approach, resulting in the development of 'Atendimento
Baseado na Comunidade' or Community Based Suppport (CBS) for disabled
children.
CBS for disabled children is based on the principles of WHO's Community Based Rehabilitation (CBR), but emphasises social integration rather than medical interventions. SCF provides technical and financial support to this programme.
The focus of this work is on enabling families of disabled children to help themselves through a transfer of knowledge and skills, and on finding ways to change and adapt society to reflect the needs and rights of its disabled members. Although the long-term goal is to integrate disability within a general development framework, integration should not be assimilation. The aim is not to 'normalise' disabled children, but rather to find ways of changing society to reflect their needs. (Stubbs, S. 1993)
A modular course in CBS activities was started in May 1993, the first of its kind in the Portuguese speaking world. Trainees were selected from five of Mozambique's eleven provinces, Maputo, Gaza, Zambezia, Niassa and Cabo Delgado. Divided into three modules, the course will run for a total of nine months. Supervisory visits are conducted between the modules by SEAS staff from central level. The second module is currently in progress in Chamanculo, near Maputo, where the first CBS work was started.
CBS workers come from the region in which they work and are well acquainted with local beliefs and prejudices about disability. The tasks of the CBS worker are to identify the needs of disabled people and the problems that can lead to impairment. They are to promote and facilitate training, in particular to teach simple techniques, such as exercises, positioning or the production of aids with locally available materials, that can be implemented by disabled people or their families. (Medi, E. 1993)
Social action workers make up the majority of the sixteen trainees, with one teacher, one Red Cross worker, three members of disabled people's organisations, ADEMO and ADEMIMO and two community members. Involving disabled adults in the programme is essential if disabled children are to grow up with positive role models. A further seventeen 'activistas', or volunteers, have been identified to work closely with the trainees in the community.
Since June 1993 the trainees have worked extensively in the rural areas where they are based. Two hundred and forty families have been identified as requiring support and 108 families are visited on a regular basis. Of course the impact of the course is being felt beyond the individual disabled child and their family, as the CBS work draws in interested neighbours, teachers and community leaders and challenges some of the discrimination previously felt by the children and their families. Interestingly, very few of the 90 children being visited have impairments that can be attributed directly to the war.
CBS workers have found that having a disabled child exacerbates an already desperate situation. The family invariably becomes poorer, it is difficult for the mother to go out to work, and not infrequently, the remaining money is spent looking for a cure.
Below is a brief summary of how the war has exacerbated the already difficult situation in which disabled children are living in Mozambique. A distinction is made between the ways in which war is an indirect cause of disability and the more direct links such as mine injuries. Case studies illustrate the experience of three children and the improvement in the quality of their lives brought about by the SEAS intervention.
Indirect links
Breakdown of health services
The systematic
destruction of more than a third of all hospitals and health centres in
Mozambique and the deliberate targeting of health personnel by Renamo has
resulted in the near collapse of health services, especially in rural areas.
Injuries and illnesses such as malaria, tuberculosis and meninigitis are
treated late, resulting in impairments that could otherwise have been
prevented.
Mozambique's Expanded Programme on Immunisation has been very successful in the urban areas. Ninety five per cent of children under two years have been fully vaccinated in the capital city of Maputo (UNICEF 1993). Coverage in the rural areas has been more sporadic because of the war. It might have been expected that the incidence of polio would have been high in a situation of civil strife, but, with only two cases reported nationally in 1993, the Ministry of Health feels that the situation is reasonably under control.
Pedro
Pedro lived in Lugela in Zambezia province
until 1988 when he and his family were forced to flee from Renamo. It was about
the same time that Pedro, aged nine, became ill with tuberculosis, which
affected his spine and ultimately caused paralysis. Pedro, as the eldest of six
children, felt a great sense of responsibility for the rest of the family,
especially since his father had left. His mother, whilst staying in the
hospital with him, unused to life in the town, had been run over by a car, and
was partially paralysed as a result. One of Pedro's sisters had been sent to
live with a relative far away in the safety of the provincial capital because
she had epilepsy.
After being discharged from hospital, Pedro went to live in Mocuba with his uncle. SEAS's first CBS module was held in Mocuba and it was during the course that Pedro was identified. The CBS trainees made a pair of crutches and a walking frame for him and helped him plan for the reunification of his family, for whom, at the age of 14, he felt so responsible.
Lack of food security
The combined effects of war
and drought conditions have had severe consequences for food production and
food security, and in turn for the nutritional status of children. Attacks on
rural populations forced people to flee to the towns or to neighbouring
countries, thus increasing malnutrition and starvation.
In 1982 in Memba district of Nampula thousands of people died and others became paralysed as a result of eating cassava containing cyanide. They were short of food because of a local drought. This situation has arisen again throughout the war because of lack of access to rural areas in the northern provinces of Mozambique. Many have knowingly eaten the cassava because there was nothing else.
Tomas
Tomas is eight years old and has lived in
Namacurra in Zambezia province with his mother since the signing of the Peace
Accord. His older sisters are all married and live far away. During the war the
family lived in the bush in hiding where Tomas's father died because he
knowingly ate poisonous mushrooms, so great was his hunger.
Both Tomas and his mother became paralysed after eating poisonous cassava. Cecilia, the SEAS CBS worker in that area, visits them regularly and has built parallel bars outside their house for Tomas to practise walking. They have helpful neighbours who assist with the tasks of daily life. Tomas has started attending school since the intervention of the CBS worker. For the time being his friends carry him to school, but Cecilia plans to make him a small cart.
Direct links
Conflict, Torture and Mutilation
Savage
mutilation was characteristic of Renamo attacks. The cutting off of hands,
noses, lips or ears, even of children, was not uncommon. Thousands of children
were traumatised as a result of witnessing the murder or mutilation of their
loved ones. The psychological trauma resulting from such experiences has been
well documented. (Richman, N., Ratilal, A., and Aly, A.)
Children have suffered immeasurable physical and psychological abuse throughout the war. Impairments resulting directly from conflict situations include a small number of sensory impairments caused by explosions, and a range of physical injuries. Thousands were captured and put to forced labour by Renamo soldiers. Many have impairments as a result of repeated beatings and being made to carry heavy loads for long distances. Far from medical care, those with serious injuries had little chance of survival and the life expectancy of the survivors was reduced by the impoverished conditions in which they were forced to live, both in the bush and in the overcrowded urban settlements.
Maria
Maria was 12 when she came to live in
Maputo with her family who fled the atrocities and starvation in Gaza Province.
Maria had been shot in the back during an attack and was unable to walk. Life
in Maputo was difficult. The family built a makeshift house in the 'bairro', or
squatter settlement of Chamanculo, on the outskirts of Maputo.
To begin with, the family took Maria to the physiotherapy department of the central hospital on a regular basis. However, Maria soon became too heavy for her mother to carry. The price of transport too expensive, so she stopped taking her. Maria had been given an old wheelchair, but is was too heavy to push around and was too wide to get through their door.
The CBS team first met Maria in 1992 when they started their work in Chamanculo. They visited Maria and her mother regularly, helping Maria with bathing and comfortable sitting positions. Plans were made to send Maria to the local school. Then came the Peace Accord and the family decided to return to Gaza, where Maria died soon after of a kidney infection.
Landmines
Landmine accidents are a long-term
hazard in Mozambique. For the foreseeable future an anticipated 550 men, women
and children will be killed or injured by mines each year. (Croll, M. and
Sheehan, E. 1993) Mines have become a greater hazard since the peace as the
population has become more mobile.
Children are particularly vulnerable to the unexploded debris of war. Injuries of the hands and face are common as newly found 'toys' suddenly explode in their hands. They are less likely, though, to survive the extensive injuries resulting from mine blasts because they are physically smaller and weaker than adults. In a sample of clients interviewed at an ICRC centre in Beira, children only accounted for 6% of those waiting to receive prostheses. (Africa Watch, 1994)
Anita
Anita, aged 10, and her sister, Sandra,
aged nine, were on their way to their old 'machamba' or small plot to cultivate
land which they had been unable to use because of the war. They climbed over a
fence into a minefield laid to protect a major water supply just 40km outside
Maputo. They did not see or perhaps could not read the signs. Sandra stepped on
a mine and Anita, following close behind, got the worst of the blast.
A nun working nearby heard the noise and ran to their assistance. She lifted them into her van and drove them to Maputo's central hospital. Anita had lost both her legs, and Sandra's injuries appeared less serious. However, Sandra died while waiting for her prosthesis to be fitted. She was younger, and obviously less strong. Anita is being trained to walk with prostheses while she waits for hers to be made. She will receive support from a social action worker when she goes home and hopefully, returns to school.
Conclusion
War is undoubtedly a major cause of
poverty and disability. The last decade has seen the death of more than 1.5
million children worldwide as a direct result of conflict. At least 4 million
children have been burned, blinded, deafened, or have lost limbs due to
landmines and countless millions have become disabled by disease or stunted by
famine as an indirect result of war.(Werner, D. 1993).
Disability is, however, a fact of life. In war and in peace, whether a country is economically developed or seriously underdeveloped, a proportion of its citizens will be either born or become disabled as a result of their impairments. The effects of this will be felt not only by the individual, but by their families, and will be an added difficulty in the already difficult situation of living in areas of conflict.
Disabled children have the same basic needs for food, clean water, love and shelter as non-disabled children. Their needs and rights are clearly spelled out in the Declaration of the Rights of the Child, the charter which guides SCF's work. The tendency is, however, for them to be excluded from mainstream society and for t heir needs to be marginalised, or reduced to a narrow medical definition with medical rehabilitation as the only solution offered. While a small number of journal articles have been published about the experience of disabled adults in war situations, little has been written about disabled children. This is testimony to the unfortunate reality of disability itself being a marginalised issue within development work.
The challenge is to accommodate the individual needs of disabled children within all development programmes and to build an inclusive society free of discrimination. Involving disabled adults in this process is considered essential. The recently initiated CBS programme in Mozambique, which looks at disabled children holistically and does not only 'treat' their impairments, represents a vision of what is possible, even in the desparate situation of post-war Mozambique.
Community Based Support for disabled children can be seen as the democratisation of rehabilitation. By enabling families and community members to carry out simple rehabilitative techniques, services can be decentralised and personalised to the needs of individual disabled children. At the same time, wider social issues are tackled such as equal access to education and employment, the challenging of negative attitudes and superstitious beliefs, and the raising of awareness about the politics of disability and development.
Key issues : Refugees/conflict/emergencies
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02/06/1998