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Bibliographies : Save the Children (UK)
The Experience of Community Based Rehabilitation (CBR) in Southern Africa
By Susie Miles
Abstract
Community Based Rehabilitation has been
practised in communities for thousands of years, but twenty years ago it was
formalised into a strategy by the World Health Organisation. Although CBR
programmes now exist in most countries in Africa and Asia, only rarely has CBR
been adopted as a national strategy. It is a philosophy rather than a system,
and is arguably too complex and cross-sectoral to be standardised as an
approach.
It is argued in this paper that in order not to repeat the mistakes of Institution Based Rehabilitation (IBR) in the community the implementers of CBR programmes should work closely with disabled people and their organisations. Mutually supportive relationships have developed between CBR programmes and Disabled People's Organisations (DPO) in southern Africa and attention has been paid to the inevitable tensions and conflicting interests between rehabilitation workers, parents of disabled children and disabled adults and their organisations. Examples are cited of the transition from a service provision approach to one of empowerment and a commitment to engage with the disability movement. The involvement of disabled adults in the design and implementation of CBR programmes has resulted in a clearer understanding of disability as a development issue. Poverty alleviation and the challenging of negative attitudes
Introduction
Prevailing attitudes among
rehabilitation workers tend to dismiss the strength, and thus the value, of
engaging with the Disability Movement. In so doing they risk both missing out
on an essential part of their education and alienating disabled people's
organisations because of their reluctance to relinquish control of the
rehabilitation process. The transition from omniscient professional to
facilitator in the community is one which requires an enormous shift in
thinking and it is a difficult one for many professionals to make. I would
argue that CBR is in danger of repeating the mistakes of Institution Based
Rehabilitation (IBR) if it does not enter into genuine consultation with
DPOs.
Community Based Rehabilitation was pioneered by the World Health Organisation (WHO) primarily because of the scarcity of rehabilitation resources in developing countries. CBR programmes tend to focus on the needs of rural populations which are furthest away from the few rehabilitation resources that may exist, although marginalised communities in peri-urban areas have also benefited from the CBR approach. CBR implementers invariably find themselves working in communities where disabled people have not yet formed themselves into groups or associations, and are therefore in a key position to initiate this process. However good working relationships between CBR programmes and DPOs at national level are desirable prior to any involvement at grass roots level.
A coordinated approach to rural disability issues is in the interests of sustainability. It also fosters the sharing of knowledge and experience between service providers and consumers. Finkelstein (1991) refers to the way in which efforts made by disabled people in the UK to inf luence the attitudes of service providers about the appropriate control and delivery of services led to a clarification of new ways of interpreting disability.
In southern Africa, The Save the Children Fund (SCF) recently made a concerted effort to bring together CBR practitioners with representatives of the disability rights movement and parents' organisations in the region to establish areas of common interest, develop a mutually supportive relationship and agree on a more coordinated way of working. The regional meeting was stimulated in part by SCF's first global meeting of staff and partners working in the field of disability. The views expressed here are largely a reflection of the discussions held during those meetings.
The first section of this paper stresses the need to reconceptualise CBR in the context of African communities and the collective way in which they operate. This will be followed by a brief look at the way in which key writers on CBR view the role of disabled people and their organisations.
CBR and the tension between individual and community
"One of the fundamental differences between Africa and the West is
the tension between the individual and the community. In the West, the
individual is God; in Africa the collective is God." (Anne Karpf quoting Ama
Ata Aidoo, The Guardian 1995)
It is very important to place the development of CBR in the context of a collective consciousness. Children in Africa are brought up to assume responsibility for their family and communities. By contrast, children in the West are encouraged to leave home and live independent lives (Kisanji, personal communication 1995). The concept of independent living for disabled people is therefore not necessarily a desirable or appropriate goal in Africa. To focus exclusively on the rehabilitation needs of individual disabled children without looking at the needs of the whole community may be misunderstood, or simply not appreciated.
Vanneste (1995) cites a disturbing example of a CBR programme which effectively destroyed the pre-existing informal mutual support network upon which a family had depended. A neighbour had been helping the family of a severely disabled child, but when a CBR worker began to visit the child, the neighbour withdrew her support. Later, when the CBR worker stopped visiting, the neighbour refused to resume her visits leaving the child and her family in a worse situation. This could have been avoided if the traditional coping or 'CBR' mechanisms had been respected.
Ideally, the CBR implementer or animator should unlock and place value on indigenous knowledge about disability and balance the local expertise with the sensitive application and adaptation of knowledge gained outside the community. CBR can be seen as a vehicle for the exchange of information between communities and governments and between disabled community members and national DPOs. If CBR workers are to fulfil this role for disabled people's groups and if they are to develop a coordinated way of working, a level of commitment to the disability rights philosophy is desirable.
A range of attitudes and ways of working with disabled people and their organisations is reflected in the CBR literature. Implementers of CBR programmes increasingly recognise the importance of involving disabled people in the CBR process, rather than seeing them as recipients of services. However, the extent to which disabled people and their organisations are actively involved in the process is difficult to determine. The Zanzibar and Mauritania CBR programmes were set up by national DPOs whose leaders are well known in the international disability movement, but unfortunately these are isolated and little known examples.< /FONT>
Definitions of CBR have developed and changed in response to field experience and there is an arguably healthy lack of consensus. Unfortunately, most of the CBR literature is produced by Northern, non-disabled commentators and there are too few disabled people's voices and especially those from the South.
The latest United Nations (1994) definition of CBR emphasises the importance of partnership with disabled people as individuals. It stresses that CBR should be implemented through the combined efforts of disabled people, their families and communities and the appropriate government services. Helander(1993) recognises the value of working with local parents' and disabled people's groups, but bemoans the fact that DPOs too often develop from the top-down rather than at grass roots level.
Some writers place more emphasis on the family, rather than on disabled people. This is especially true of programmes that prioritise children and particularly children with severe disabilities, whose experience and needs tend to be neglected by the disability rights movement.
"The basic premise of CBR is that the greatest resource in developing countries for helping disabled persons lead lives which are fulfilled and productive is a well advised and supported family" (O'Toole 1994 p. 5).
The International Labour Organisation (ILO) is concerned about broader issues such as integration and, although the main focus is on service provision, it acknowledges the increasing importance of the disabled people's movement.
"A new development, which also makes its way gradually into rural areas, is the emergence of associations of disabled people. This development will sooner or later replace a patronising form of planning for disabled people by a planning process which involves the target beneficiaries" (Momm & Konig 1989 p 6).
David Werner goes a step further and argues that disabled people should be in control, involvement is not enough. He recognises that families of disabled people have an equally important role to play. His views are substantiated by his experience, both as a disabled person and as a staff member of Project Projimo in rural Mexico. This is run and almost entirely staffed by disabled villagers and maintains high standards of appropriate and affordable rehabilitation.
"Only when programmes for disabled people are led and controlled by disabled people (and/or their families) are they likely to help disabled persons gain self-determination and a respected, equal position in society" (Werner in Finkenflugel 1993 p viii).
It is worth noting that Werner is one of very few disabled spokespersons on CBR. Sadly, there appears to be very little cross-fertilisation of ideas between CBR writers and implementers and the disabled people's movement and so attitudes tend to remain unchallenged. In southern Africa, however, the interaction between CBR programmes and DPOs has led to the development of a more consumer-focused approach to CBR.
The southern African context and SCF's involvement
This section will focus on SCF's disability work in southern
Africa and the unique political context in which this was carried out and will
highlight the role of the Southern Africa Federation of Organisations of the
Disabled(SAFOD) as agent provocateur and ally in SCF's journey from service
provision to politics. This process has involved a redefining of rehabilitation
needs through a process of community consultation and a greater focus on the
empowerment of parents and disabled people.
The disability rights movement in southern Africa has its roots in Zimbabwe. In t he mid-1970s a group of physically disabled people began to organise themselves in the institution in which they lived and worked. Charlton (1993) has charted this development through a series of interviews with key individuals. One of these key individuals, Joshua Malinga, became the main link with Disabled People International (DPI) from its inception in 1981 and was later elected chairperson. The disability movement in southern Africa was therefore strongly influenced from its early stages by international disability politics. Malinga was instrumental in establishing SAFOD in 1986. SAFOD is the umbrella body to which all national DPOs have become affiliated and, in turn, it is affiliated to DPI. SAFOD's original aims were to support the formation of DPOs, both local and national, to strengthen existing ones, and to promote leadership training.
The southern Africa region has been fraught with political conflict, drought and an unequal distribution of resources. It has not been easy to foster the development of altruistic and committed leaders in this context (Leaman and Fricke 1991). Although the struggle against apartheid in South Africa has had a profoundly negative effect on the whole region, it has provided a revolutionary context from within which the disability movement has emerged and with which it has identified its own struggle. The relative cohesion of the region, which, ironically, is partly due to South Africa's political and economic influence, is one of the factors contributing to SAFOD's success as one of DPI's regional bodies.
It would have been conceivable, though arguably unethical, for SCF to have created a small empire of CBR initiatives without reference to the disability movement. SAFOD was, however, a rich resource upon which to draw in the late 1980s when CBR was a little understood concept in southern Africa. SCF's involvement began in 1988 with the appointment of a Regional Disability Adviser whose responsibility it was to act as an information broker, to develop south-south networks and to support the development of innovative community-based initiatives which would provide models for evaluation and training (Saunders, C. 1987).
To date, SCF has supported ten programmes in Mozambique, Zimbabwe, South Africa, Swaziland and Lesotho. These include a national Integrated Education programme in Lesotho; five CBR programmes, four of which are health-based and a fifth which is located in the Ministry of Social Action in Mozambique; two institution-based outreach projects in Zimbabwe, which preceded the regional disability programme; and two DPOs.
The CBR programmes have all been developed since 1990, although their foundations were laid in the late eighties. This new wave of 1990s programmes has had the benefit of learning from more well-established projects, most notably in Kenya, and from the development of CBR thinking in the eighties. SCF is more involved with DPOs in southern Africa than in any other region in the world and this is largely due to SAFOD's influence. The extent to which the rehabilitation programmes have worked with DPOs has varied enormously between the countries for reasons which will be expanded upon later.
Historically, the dividing line between SCF-supported CBR programmes and DPOs was their target groups, with SCF focusing on children and DPOs on adults. However this proved to be a naive and unrealistic distinction as implementers of CBR programmes were faced with the changing needs of the children as they grew into adulthood. It was crucial, however, to define the CBR workers' relationship with disabled adults so that they were not simply seen as an extension of their client group, but as valuable participants in the CBR process.
The International Labour Movement (ILO) has stressed the importance o f establishing the different needs and therefore the different types of assistance required by disabled adults (Momm & Konig 1989). Whether assistance means access to services, help with the establishment of self-help groups and/or empowerment, it is important to recognise the very different nature of the relationship between CBR workers and adults from the one that is likely to exist between CBR workers and children. Children do not have a voice and tend to be passive recipients of services, whereas disabled adults are either recipients of services, potential leaders of programmes, or they may choose not to be involved at all. The difference in the relationship is arguably more crucial than the different type of assistance required.
Assuming that a more equal relationship develops, the opportunities for the greater involvement of DPOs in CBR increases. The need for positive adult role models for disabled children in CBR has prompted CBR implementers to challenge DPOs to become more involved with children's and parents' issues. However many of the region's DPOs lack the capacity to involve themselves in anything other than the development of their own organisations. Others are reluctant to get involved because of their uneasiness about the underlying philosophy of rehabilitation, which places the power firmly in the hands of the professionals.
The continued use of the word rehabilitation is a source of conflict and debate. The following section will examine the difficulties arising from the word rehabilitation and will describe the development of programmes in Lesotho and South Africa which prioritise disabled people's access to education and employment rather than medical rehabilitation.
CBR without the 'R'
The ideas represented by the
term CBR have sparked off disability initiatives in communities in most
countries in Africa and Asia and the term has been interpreted in many
different ways (Miles 1993). For those projects that work in partnership with
disabled people, it would be preferable to find a term that encapsulates the
idea of a community based strategy which promotes equality of opportunities. It
should reflect the fact that disability is not only a health or social welfare
issue, but also one of politics, economics, development and human rights.
Community Based Support (CBS) for disabled people is an example of an
alternative term. It was adopted by the Ministry of Social Action in Mozambique
as a deliberate move away from the medical model which emphasises the treatment
and rehabilitation of impairments (Miles & Medi 1994). In the meantime, the
term CBR will continue to be used here as a catch all, but it is accepted that
it may outlive its usefulness.
The adoption of a more consumer-focused approach to CBR by the Scott Hospital CBR team in Lesotho and the Amawoti Disabled People's Association in South Africa has enabled disabled people and CBR workers to work together on a more equal basis. By approaching disability as a community development issue, disabled adults and parents of disabled children have become active participants in the CBR process. This has resulted in a type of CBR which places less emphasis on the 'R' and instead prioritises education and employment issues.
I will now briefly describe the context in which the Scott and Amawoti programmes are working, the main aspects of the work and the similarities between the two. This will be followed by a discussion of the role of home visiting and multi-disciplinary teams in CBR. It is argued that when disabled people and parents are actively involved in CBR the programme is moulded by the skills and interests of the people involved rather than by prescriptive manuals and the received international wisdom on the issue.
Scot t is a mission hospital serving a sparsely populated rural community in the foothills of Lesotho of approximately 170,000 people. Scott initiated a Primary Health Care (PHC) programme in 1974, prior to the Alma Ata declaration, and in the mid-1980s it pioneered a Home Nursing programme which targeted elderly people and those who had had strokes. The need to address disability as an issue in the community arose both from the PHC team's consultation with the Village Health Committees and from the nurses' growing awareness of disability through the Home Nursing programme. Lessons learnt from mistakes made in the implementation of PHC ensured that the PHC team entered into genuine consultation with the community in order to establish their ownership and involvement in the disability work.
Amawoti is an informal peri-urban community situated 30 kilometres north of Durban in South Africa. With a population of 100,000, it is a community marked by poverty and an associated lack of services (Philpott 1995). The Amawoti Disabled People's Association (ADPA) grew out of the concern of one of the local civic committees about the needs of disabled people in their area. Support was provided by the staff of a community based PHC project in Amawoti which viewed health not as a medical problem, but as a broader question of access to power. ADPA sees its work as being at the interface between CBR, PHC and community development.
Scott and Amawoti are small projects which have pioneered a different approach to CBR and have had an impact on the development of thinking in the region about community disability work. Despite their very marked differences, they have the following aspects in common:
Home visiting, together with attitude change and the empowerment of disabled people, has always been thought of as one of the cornerstones of CBR. Home visits provide a crucial, though time-consuming, therapeutic and support service to those disabled people and their families who would otherwise be unlikely to have regular access to rehabilitation services. While not wishing to devalue the efforts of CBR workers to provide therapy and support to individuals, I would argue that, in some cases, home visiting is in danger of becoming an institutionalised activity which has lost sight of its original purpose.
Interestingly, home visiting is given much less importance in the Scott and Amawoti projects. Some of the possible reasons are as follows:-
Although the projects have prioritised attitude change, income generating projects and empowerment, home visiting has not been ruled out. In fact, home visits were made in the initial stages in order to identify disabled children and to train key workers. Parents in both projects are beginning to express their interest in learning simple rehabilitation techniques, in order to reach disabled people and their families who are not already involved in the programme. If home visiting is adopted as one of their strategies, it will be an activity defined and controlled by the community, rather than one performed or monitored by outsiders.
Similarly, roles and responsibilities in Scott and Amawoti have been defined according to the abilities of those involved and the disabled people's and parents' priorities and a multi-disciplinary team approach has developed. This is in contrast to the WHO approach to CBR of training a cadre of workers who each carry out an agreed set of tasks. These are not the multi-disciplinary teams associated with highly trained professionals and case conferences, but a collection of committed individuals with a variety of skills to offer. Tasks are assigned based on the abilities and interests of the individuals.
In Amawoti a conscious decision was made not to train individual CBR workers, but to assign tasks according to need. Initially in the Scott project, CBR workers were trained as individuals and they have opted to work cooperatively and to develop the strengths of each individual. More recently the Scott team abandoned the CBR worker strategy in favour of supporting the development of parents' and child-to-child support groups from which key individuals have emerged. A variety of specialist services are on offer in both programmes including: literacy teaching; creche facilities; examination of new-born babies; knitting machine instruction; income generating activities; the manufacture of aids and appliances and the child-to-child approach in schools. Further training in these specialist areas will be sought, where possible, for the key individuals who have shown the greatest commitment to the programmes.
Developing a mutually supportive relationship
The
move towards a consumer-controlled approach to CBR has necessitated the
formalisation of the working relationship between CBR programme implementers
and their DPO counterparts. This process is far from complete in southern
Africa, but initial discussions have been held to establish common areas of
interest, while clarifying potential sources of conflict and differing
priorities, for example between adults and children's issues.
CBR workers tend to have more contact with the families of disabled people than with the disability movement, especially in programmes which prioritise the needs of children, and therefore do not necessarily feel that they should be accountable to DPOs. They may have contact with disabled adults as individuals or they may be involved in facilitating the development of self-help groups of disabled adults, but this does not necessarily bring them into contact with the disability rights philosophy and they may never be forced to confront their own negative attitudes.
Similarly, there is a tendency for DPOs to assume that rehabilitation workers are not interested in disability rights issues, and for the two to be perceived as being mutually exclusive or incompatible, as illustrated by the following quote:
"Service providers would not be interested in the philosophy and objectives of the Movement. They suspect the Movement is there to sabotage them.&quo; t; (Mbewe & Lee 1991 p.30)
However, the movement sees itself as a watchdog whose responsibility it is to monitor the quality and availability of services. Furthermore, disabled people feel they have a duty to educate rehabilitation workers:
"Our task is not only to educate disabled people but other people especially in the short term those who work in the disability field like therapists and social workers. In fact, these people play the role of social control, so we must transform them into our supporters" (Joshua Malinga, quoted in Charlton, J. 1993 p.60).
In response to proposals for funding from SAFOD, SCF produced a discussion document (Miles 1992) to clarify SCF's disability policy and funding capacity and to open up discussion on common areas of interest with a view to formalising and developing a mutually supportive working relationship. In 1992 SCF secured funding for the first time in southern Africa for two DPOs, with a view to developing stronger links between CBR and DPOs. The DPOs were the Amawoti Disabled People's Association and the Lesotho National Federation of Organisations of Disabled people (LNFOD)'s development activists' training programme whose impact will be examined later.
How best to work with DPOs had become a major issue for CBR workers throughout the region and attitudes to this varied enormously. The need to consult and confront DPOs about the role of CBR in the disability movement came about through discussions between project staff and SCF's adviser. In 1994 a series of meetings were held, both regionally and globally (SCF 1994) to review SCF's disability work, and relationships with DPOs was one of the major topics.
An interesting comparison was made at the final regional meeting between the very similar aims of the CBR programmes and DPOs represented. The CBR programmes aims were to raise the value of disabled people in the community; to address the needs and rights of disabled people; and to empower disabled people to stand up for their rights. The aims of DPOs were to integrate disabled people into society; to protect the human rights of disabled people; and to be a voice for disabled people (Miles 1994).
Given the similarity between these two sets of aims, a sharing of resources and the development of a more coordinated way of working seemed the obvious way forward, but first differences in philosophy and approach needed to be discussed as honestly and openly as possible. From the CBR perspective it was felt by some that DPOs tended to be undemocratic, disorganised and led by elite groups of physically disabled people. There was a reluctance to work closely with those DPOs whom they did not consider to be representative of the majority of disabled people who live in poverty. The tendency in this situation had been to bypass them, or to inform them of CBR activities, but not to enter into genuine consultation about the needs of their common target groups. An example of a more coordinated approach to the needs of rural disabled people follows.
Where there is no CBR: the role of development activists
This section highlights the role that DPOs can play in promoting the concept of
CBR in the absence of CBR programmes. The mobilisation of disabled adults
living in rural areas through a LNFOD's development activists' training
workshops has resulted in their increased confidence and motivation. A good
working relationship between LNFOD and the CBR and National Integrated
Education programmes in Lesotho has ensured that disabled children's issues are
high on the agenda.
LNFOD is a cross-disability national umbrella organisation and since 1993 it has consisted of four member organisations, representing peo ple with physical, visual and hearing impairments and learning difficulties (and their parents). Over a three year period LNFOD has trained 30 rural disabled people per year as development activists in a series of three, one week workshops. The aim of the programme is to strengthen and 'degentrify' the membership and, in so doing, develop links between CBR, IE and disability rights issues (Mbewe & Lee 1991). Places on the training programme were shared equally between the member organisations and 50% of all trainees were women. In addition, the CBR programme was allocated places for disabled adults who were potential leaders in the programme.
The courses included an introduction to disability as a development issue, consciousness raising on disability rights issues, advice on how to set up and run local committees and ideas on income generation. There was also some orientation on disabled children's issues and visits were organised to both segregated and integrated schools. The organisation of these courses and the follow up in the communities were the responsibility of the one salaried person within LNFOD and its volunteer committee members.
The main impact of the training has been in the raising of self-esteem and confidence of the individuals trained as the following quotation illustrates:
"The training has brought miracles to my life. I am the only blind person in my village and I used to think I was the only one in the world. Now I walk tall." and "I saw myself as an outcast - now as an equal" (quoted in du Toit 1995 p16).
The mutual support systems which have developed through the workshops and subsequent local meetings have fostered a greater sense of self-worth in the trainees and of control over their own lives:
"We used to feel isolated and suffered in silence - now we meet and make our own decisions" (ibid p18).
Similarly, the parents who have been trained have experienced a a change in their attitude towards their disabled children and a greater appreciation of disability issues:
"Being involved with disabled people has taught me to handle my situation. My disabled child is now active in my family" (ibid p18).
Finally disabled adults now feel committed to CBR-type activities such as the challenging of negative attitudes and the counselling of other disabled people and their families about education, employment and rehabilitation issues. They consider themselves responsible resource people in their communities and in particular they are concerned to support parents of disabled children:
"I now have the courage and understanding to approach parents to change their view of their children with disabilities, to seek education for them and to organise for self-help" (ibid p17).
The development activists have formed support groups in which they plan their activities, such as holding community meetings and establishing self-help groups. Their awareness of CBR issues has given them the confidence to provide and advice and information to families and in this way they are performing part of the function of CBR workers. In fact, LNFOD has taken over the management of an NGO-run CBR programme in the south of Lesotho and this provides them with the perfect opportunity to integrate the two approaches.
The following section describes the reverse situation, where CBR workers are involved in setting up local disabled people's support groups, often with very little input from the national DPO.
The role of CBR where there is no DPO
CBR
programmes invariably operate in communities where there is no DPO and CBR
workers are often instrumental in facilitating their development. In the
following examples the CBR workers provide a vital link between local groups
and the national DPO and relevant government departments. They act as a channel
of information and ideas and are therefore in a position of power. The way in
which this is handled is crucial to the long-term sustainability of the local
group. Local DPOs are in danger of either becoming totally dependent on the CBR
programme and therefore being ineffective, or of being left to develop so
independently that they lack support and resources and so flounder.
One of Africa's earliest rural CBR programmes in Kibwezi, Kenya began without the involvement of disabled people, but its staff have come to realise the drawbacks of this way of working. The Kibwezi programme targeted disabled children up to the age of 16 and neither provided services for adults nor considered helping them to set up a local support group. In 1990 the programme was evaluated and this lack of involvement of disabled adults was highlighted as an issue of concern (Saunders & Zinkin 1990). As a result of this a local group began to meet as a separate entity from the CBR programme. The coordinator of the programme is now convinced of the importance of starting CBR programmes with the full involvement of disabled adults. Furthermore this is necessary "if the programme is to be sustainable" (Shaya Asindua quoted in the video 'Children, Disability & Development' SCF 1994).
In Mozambique, the Community Based Support (CBS) team attached to the Ministry of Social Action in Mozambique provided a meeting room for a group of deaf school leavers who had failed to make their voices heard in the national DPO. The group prioritised the development of a national sign language and became involved with teaching small groups of deaf children as part of the national CBS programme. The group will soon form itself into an association and will apply for affiliate membership to the national DPO. The CBS team played a crucial role in supporting a neglected group of disabled people who, in turn, have made an invaluable contribution to the community disability work by supporting the development of groups in many different provinces.
In South Africa a working relationship between disabled people and occupational therapists has existed since the mid-1980s with the advent of an organisation known as Rural Action on Disability (RURACT), which is affiliated to the national DPO. Its responsibility is to promote CBR and develop networks throughout South Africa and the surrounding countries. RURACT has provided a useful forum for the development of thinking on CBR issues in the context of the disability rights philosophy.
The Alexandra Health Centre's CBR programme in South Africa had, as one of its original aims, the establishment of a support group of, and for, disabled people. The process of facilitating the development of the Alexandra Disability Movement (ADM) has been documented from the point of view of the CBR implementer (Cornielje 1993). The creation of a body of disabled people to whom rehabilitation workers would be accountable was one of the original objectives. Despite the difficulties of working in a politically divided society and the lack of quality leadership, ADM is increasingly playing a vital role in the development of rehabilitation services.
In Amawoti, disability was identified by the local civic committee as an issue to be addressed and a committee was formed of concerned persons which included disabled people and parents of disabled children. Sub-committees have since been formed of interest groups so disabled people meet separately as a sub-group, but they come together with the parents and civic committee members to form the Amawoti Disabled People's Association as they do not wish to isolate themselves from the rest of the community. They consider it their role to raise awareness of the fact that disabled people are members of the wider group of disadvantaged and impoverished people in Amawoti and they encourage others 'to be inclusive in their approach to development' (Sue Philpott quoted in video, ibid).
In Lesotho the Scott CBR programme established contact with the national DPO, primarily to solicit help with the training of CBR workers and teachers. Close contact between the CBR programme and the DPO has been possible because Lesotho is a very small country and because of a good working relationship between the respective leaders. Parents' groups have been set up and, as membership is open to disabled people, the need for a separate DPO has not been identified.
In the above examples, the CBR programmes have provided the initial funding for the establishment of local DPOs and parents' groups and it is unlikely that these groups would have been set up without this support. The local groups all have a role to play in the CBR programmes with which they are associated. In the case of Alexandra, this role was pre-determined and with the others it is being defined as the programme develops. The Amawoti programme is somewhat different as it does not use CBR terminology and it is a single organisation which is fulfilling both functions. Finally, membership of local DPOs is not always restricted to disabled people and it is very common for disabled adults and parents to work together at a local level.
A contrasting example is that of the Morocco CBR programme which did not initially meet with the approval of the national DPO. SCF had provided considerable financial support to an elitist school for physically disabled children for many years. A decision was then made to hand over responsibility for the school to the government and instead promote integrated education with the support of CBR services as a more sustainable alternative. The decision met with hostility from the national DPO, whose membership largely consisted of graduates from the school (Carey and McIvor 1995). Gradually, through a process of consultation, many of the school leavers have come to appreciate the value of a CBR approach which allows children to remain with their families.
One of the main purposes of SCF's regional meeting was to clarify the role of CBR workers in the disability movement. It was agreed that this should be as follows (Miles 1994):
The greatest and most urgent need was considered to be the capacity building of DPOs. The role that CBR programmes can play in this has to be carefully worked out, but first it is helpful to understand why capacity building is so important. Exclusion from the education system has had perhaps the most disabling and underdeveloping effect on disabled people, resulting in poverty, illiteracy and unemployment. This lack of formal education was cited in the regional meeting as one of the reasons for the tendency to run DPOs undemocratically and with insufficient attention to gender issues. It was acknowledged that the political situation in most countries in the region provided a poor role model.
DPOs, especially at a local level, te nd to lack funds, administrative and logistical support and are generally less well-resourced than CBR programmes. More coordinated planning in the deployment of scarce resources would improve the situation, but the empowerment and capacity building process will inevitably be slow - slower than most donors are likely to tolerate.
Parents as partners
This final section deals with
the issue of parents and their involvement in both CBR programmes and the
disability movement. It analyses some of the tensions and misunderstandings
between disabled adults and parents and the way in which they have come to
realise their common oppression.
In southern Africa, the term parents rather than families tends to be used, as they have organised themselves into pressure groups and are active in promoting and implementing CBR activities. In practice, they are primarily mothers' groups, as many women are abandoned by their husbands as a result of the birth of the disabled child, or upon diagnosis. The break-up of families which have a disabled child is not unique to Africa, but there are strong cultural and economic reasons for this as the economic pressure to produce healthy children is very strong (Kisanji 1995).
Although mothers have been extremely effective in organising themselves into support groups, they have not achieved the same levels of recognition or success as the disability rights movement and what they have achieved is poorly documented. A major reason for the disparity between the two groups in southern Africa is undoubtedly gender-related, as DPOs tend to be led by men and parents' groups by women who are primarily the sole breadwinners for their families (Miles 1994). SAFOD's progressive gender policy will in time redress this imbalance, but the fundamental inequalities between men and women in relation to child care are likely to continue.
As parents have become more involved in the setting up of their own organisations and in CBR programmes, they have come into contact with broader disability issues. This level of parental involvement in 'the struggle' effectively challenged the predominant attitude in SAFOD that parents neglected, overprotected and discriminated against their children. This attitude had been compounded by the lack of interest shown by DPOs in children's issues in general, but more specifically in those with profound and multiple disabilities and in the consequences for their families. Not surprisingly, parents were unsure of their role and did not see disabled adults as their natural allies. It was necessary to clarify the respective roles of DPOs and parents' organisations.
In Lesotho and South Africa parents have argued strongly that they are disabled by virtue of being the full-time carers of severely disabled children and that, together with their children, they are affected by the stigma of disability. As a result parents' organisations have been accepted as affiliate members of DPOs which enables them to pursue their own agendas which are quite distinct from those of disabled adults, while maximising the opportunity of being an ally of the disability movement.
A lack of concern for children's issues is not peculiar to southern Africa as the following quotation from the UK illustrates:
"I had been active in disability politics for more than ten years, but it was only when I became a parent that I realised that the moves forward that we have achieved for ourselves as adults with disabilities have not reached the lives of disabled children at all" (Micheline Mason quoted in cover note Mason & Reiser 1992).
I would contend that the needs of disabled children for role models and of parents for support are more likel y to be met in programmes where disabled adults and parents are playing a key role and are working effectively together. Tensions inevitably exist between the two groups, especially where scarce resources. However, through a process of constructive dialogue and a commitment to working in partnership, a mutually supportive relationship can be developed through which disabled adults and parents can teach each other a great deal.
CBR implementers have successfully trained mothers of disabled children as CBR workers in Lesotho and South Africa. In many instances they have proved to be more effective and more dedicated than health workers as Buella, J., Baris, F. et al (1995) testify from their experience in ..... Clearly mothers are a resource to be mobilised, even if they do not take on the formal role of CBR worker.
It tends to be assumed that parents can empathise with families who have disabled children more than a disabled adult. I would argue that this approach neglects the disabled child's need for positive role models and instead focuses on the needs of the adults who care for the children.
Conclusion
The long-term goal of all CBR
programmes should be to facilitate disabled people to take control of their own
lives and to play a decisive role in any services that are created. In a recent
survey of people living with acquired impairments in the UK, services were seen
as tending to remove choice and control because they were provided by others on
their behalf (Todhunter, C., Pilgrim, D. & Pearson, M.).
There is enormous potential in developing countries to leapfrog over the professional hurdles created by the rehabilitation industry in the North and to work directly with disabled people to ensure that the services which are created are those that are most needed. The cultural bias in Africa towards collective, rather than individual, needs and responsibilities is a bonus for CBR.
Resource-driven service provision based on the Western model is not sustainable and is of questionable value. Disabled people need access to mainstream services and to appropriate information in an accessible form. CBR has the potential to unlock and validate existing indigenous knowledge and information systems while facilitating access to relevant information and ideas outside the community. I have argued that this can only be done with the active participation of the consumers themselves and with an understanding of disability as a development issue.
The danger inherent in CBR is that it may simply become a community version of IBR, with the power still firmly in the hands of professionals and with disabled people and their families in the role of passive recipients. It is important that programmes strive to develop services which have appropriately high standards while at the same time ensuring an equal partnership between consumer and professional. This will inevitably call into question some of the fundamental aspects of CBR, as it is most commonly practised. The development of a mutually supportive relationship and an honest discussion of the differing agendas of CBR workers, parents and DPOs has been helpful in the redefining of a more consumer-focused CBR strategy.
In summary, CBR workers have a key role to play in the development and capacity building of DPOS, especially at community level. They have access to information and resources which need to be shared. By feeding information about disability work at community level to the policy makers at national level they can provide an essential link between local and national issues. CBR teams should work together with DPOs to address poverty and to tackle education and employment issues. At a political level, they can support the effor ts of DPOs to run advocacy programmes and to develop policy and legislation on disability. It is crucial that CBR workers and donors recognise that the pace will inevitably be slow and that it is in the long-term interests of disabled people to work with, rather than against, the disability movement.
Bibliographies : Save the Children (UK)
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09/06/1998