|Sustainable Development and Persons with Disabilities: The Process of Self-Empowerment (ADF, 1995, 117 p.)|
|Section I: Understanding and perception|
|Chapter 4: Community-based rehabilitation|
From the government level, we now come down to the level of the communities among whom the people with disabilities live. But this time we begin with a poem.
The poem is a statement of support for CBR -Community Based Rehabilitation. Insensitive attitudes and prejudice against persons with disability lie at the root of the predicament of the PWDs. These prejudices have tended to separate the disabled people from the community, and sometimes families, from which they have a right to expect love, shelter, patience and attention. They have to be "next to you not far".
Past and present practices in relation to the people with disabilities fall into six distinct categories:
Isolation: The worst practice is isolation. It is a form of rejection. It is the denial of the very humanity of the person, especially so of people with disabilities arising from illnesses such as leprosy, epilepsy and mental impairment.
Get it from the horse's mouth
Is it true that you want to know?
I am physically disabled I need love,
It is not enough I have more.
No, I am not through
Girlie Hlanze, Swaziland
Practices in Relation to PWDs
Overprotection: This, too, is a form of denial of the personality and capability of the person with disability. You can suffocate a person with excess love and sympathy. The effort to secure independence from family is sometimes almost like fighting a liberation struggle.
Institutional welfare: The more liberal forms of isolation take the form of special treatment of the PWDs in rehabilitation centres. These include both state institutions as well as those set up by (NGOs) especially the churches. This involves considering PWDs as objects of charity an welfare. Although justified in special situations, its more generalised application to all the disabled persons constitutes a gross insensitivity to those amongst them who, with support, can look after themselves.
Educational approach: Traditionally, governments and (NGOs) have tended to reinforce the isolation of children with disabilities by establishing special and separate educational institutions, such as schools for the deaf and the blind. Unless absolutely necessary, e.g., for purposes of learning braille, the aim should be integration within the mainstream.
The medical or professional approach: Once again a case can be made for certain kinds of disabilities that can be helped or alleviated through short periods of physiotherapy, psychotherapy or communication therapy. But a wholesale application of the "medicalist" approach to disability is both harsh and harmful to the PWDs. It isolates the clinical aspect of disability from the whole physical, psychic and spiritual being of the PWDs, and must be avoided at all cost.
Community Based Rehabilitation (CBR): As distinct from the above practices, CBR encourages communities to accept PWDs as integral members of society.
This chapter focuses on CBR, not in order to exalt its virtues in comparison to other approaches but in order to look at it critically in the light of some practical experiences. The other objective of the chapter is to examine what facilitative (or enabling) role the community can play in relation to the disabled people, in the light of our discussion on the "enabling environment" in the previous chapter.
CBR is an approach of rehabilitation, equalization of opportunities, and social integration of all people with disabilities within community development. It is implemented, using locally available resources, through the combined efforts of the disabled people themselves, their families and communities, and the appropriate health, education, vocational and other social services.
Let us break this broad definition into specific goals.
What do we want to achieve in CBR?
We want to achieve:
· The full social integration of persons with disabilities within their communities;
· Disability prevention in Primary Health Care (PHC) activities, and rehabilitation to minimise the disabling conditions and barriers;
· The integration of disabled children into mainstream schools,
· The removal of social, institutional and attitudinal barriers to the opportunities for gainful economic activities for PWDs; and, all this leading to the self-realisation and self-empowerment of PWDs.
How do we go about it?
It is, essentially, a participatory approach in which persons with disabilities working within their communities develop their own strategies to enable them to fully participate in the mainstream of community life by:
· building their self-confidence;
· promoting horizontal, multi-sectoral coordination and cooperation;
· using locally available resources (material and human);
· developing a positive attitude among both able bodied and people with disabilities towards one another through sensitization programmes;
· providing information and raising awareness about disability issues to the communities;
· demonstrating the abilities, skills and contributions of PWDs;
· providing appropriate aids and equipment; and
· equalising opportunities of access to education, health, skills training, employment, recreation, social and cultural life.
These are broad guidelines. They may not apply to all situations and in all circumstances. Much depends on the communities themselves:
· their location (whether rural or urban);
· their cultural, religious and traditional heritage;
· the availability of local resources;
· the degree of unity within the community;
· the skill and wisdom of community leadership, including those who can provide leadership from among the disabled people themselves;
· the type of disability that predominates in the community (for example, river blindness); and so on.
There is no one ideal model.
Various Models of CBR
Community Rehabilitation Village (CRV)
Community Integrated Program (CIP)
Neighbourhood Day Centres (NDC)
Outreach Mobile Team (OMT)
Family-Based Rehabilitation Program (FRP) Outreach
Mawotto's ferry boats. (Photo by Thad Kaminski)
Given the diversity of the above factors, all kinds of combinations are possible. For example, a village steeped in the Islamic tradition would have one approach to CBR compared to another where mixed religions and mixed cultures coexist. Below are some possible models or scenarios that might apply to some situations but not to others. Again, we place it in a continuum showing there are no walls that separate one model from another, and that each approach could start with one model and move into another.
The continuum has on its left the most comprehensive approach - Community Rehabilitation Village (CRV) where the whole village or community is involved in the rehabilitation process. At the extreme right then, we have a family based rehabilitation programme (FRP) with some outreach support from outside. In between are some intermediate approaches.
The Community Integrated Programme (CIP) is a variation of the CRV whereby the PWDs and the able-bodied in a community are collectively involved in a joint project, for example, a communal garden to ensure village food security and storage.
The Neighbourhood Day Centre (NDC) rings together people with different disabilities, and sometimes carets, to a common location within the community to work, counsel each other, gossip and rejoice together. The important thing is that they go back to their respective families and thus are not isolated.
The Outreach Mobile Team (OMT) is a rehabilitation outreach programme whereby specialist staff from a nearby institution such as hospital or school visit individual homes, day centres or clinics.
As we said earlier, and it needs repeating, these approaches are not mutually exclusive. CRV and CIP can go together. CIP and FRP can go together. And the OMT can apply to all situations. What models or combinations are designed entirely depends on the people themselves using the "participatory" approach, and the circumstances of each situation.
We must repeat that there is no "ideal model", and the attempt to create one will turn it into yet another "institutional structure." However, it is important that for purposes of sustainability, whatever approach is adopted, it has the backing, support and involvement of the community.
Mawotto Lake Transport Project, Uganda: A Case Study of CRV
Mawotto is a little peninsular village on Lake Victoria in Uganda in the sub-county of Ntenjeru in the District of Mukono. In its sunny wave-swept shores live a community of about 70 households, including 12 families of the blind. Most of these families were trained in agriculture at the Salama Agriculture Training Centre. The Centre was started in 1956 by Sir Cruther Mackenzie, himself blind, from New Zealand. Mawotto was selected as a settlement area for the blind by the Uganda National Association for the Blind (UNAB).
Terri and her husband Stanlake are both totally blind. Terri is from Teso District in the north of the country, and Stanlake is from Mukono District in Buganda, and they met at the Salama Training Centre. Terri lost sight at the age of one year because of measles ("I am lucky," she says, "I've no idea what sighted means.") Stanlake lost his sight when he was eighteen. They have four children, all sighted and now grown up. Musoke, 20, deals with the fishing project of the village; Robina is 16, Michael 14, Omonding 10, and they are all at school Terri herself teaches at the local school where all the children are sighted. "How do you do it?" I asked in wonder. "There is no problem, somebody helps me to write on the blackboard, "she laughed. Stanlake works on the farm. "We use the same tools as the sighted," he replied in answer to my question, "only the technique is different. Our rows of maize and potatoes and beans are even more straight and neater than those of the sighted, "he teased. Stanlake is also the Chairperson of the Mawotto Branch of UNAB.
With the help of UNAB, the blind families started the Mawotto Lake Transport Project. The idea was to ferry people across from the village over to the other side of the Lake into Kampala. A feasibility study was done. Some members got training in project management. They applied for funds from the African Development Foundation (ADF) to purchase boats and other equipment, and to their pleasant surprise they were successful.
Two more projects were added: a piggery ("the second best in the District of Mukono"), and farming. Now they have food to eat and the surplus is sold to generate cash.
"We have the same problems as those who are sighted," the chairperson explained, "Some people from Kampala are cutting down our trees for commercial purposes. The hungry monkeys are now descending to feed on our maize. Also, on account of some pest in the soil our bananas (matoke) are not growing well. We have to solve these problems together." "Yes," another member added- "Charles is a member of the RC 1. Whenever we have a problem, we mobilise the RC (Resistance Council) system."
When asked "How are you linked with the rest of the community?" one of the members of the Mawotto Branch Committee of UNAB replied: "Two of our members are teachers; in fact, Byekwaso, our Project coordinator is the chairperson of the Parent-Teacher Association of the school." A female member of the Committee added that a blind person is the chairperson of the Women's wing in the village.
Here is an example of a CRV type of CBR fully in operation. The blind live and work within the community, sharing its pains and pleasures. They are fully integrated into the life of the community, doing their own things quite independently and yet in partnership with the rest of the community.
Bwaise, Uganda: A Case
Study of NDC, OMT and CIP
In the outskirts of Kampala not far from the citadel of learning (Makerere) and the country's national hospital (Mulago) lies a peri-urban sprawl of crowded tenements of people trying to make a living on the edge of history. Not that the owners of the shops that line the main street with open drainage are poor. They are rich, but they don't live in Bwaise (for that is the name of this shanty town), they only come there to collect their profits. Behind the shops, in ramshackle dwellings erected hazardously on a swampy terrain live the real dwellers of Bwaise. They are frequently water flooded. Rubbish heaps abound. Mosquitoes thrive. Inevitably, there is malaria which affect especially children with cerebral malaria that results in brain damage. These must be among the poorest people in the world. And amongst them those with disabilities (of all kinds) must survive through sheer force of will.
Simon Lutaya writing with his toes. (Photo by COMBRA)
They are facilitated by an organization called COMBRA - Community Based Rehabilitation Alliance - founded by two determined health workers, a dedicated former nurse and a physiotherapist of Mulago Hospital working initially as volunteers in their own time. COMBRA has now become a recognised institution for training in the CBR approach to disability. They now offer course "modules" in CBR management and management of specific disabilities. The courses are based on a combination of theory (12 weeks) and field work (4 weeks).
Each trainee is allocated two families who have a member with disability in Bwaise. The trainees come once a week to visit the families of the disabled persons, and they practise hands-on assessment, counselling and therapy. Since their founding in 1990, COMBRA has trained 50 community workers in CBR. They have lost 10 to some donor-funded organisation that paid them enticing salaries to do research on AIDS. Of the others, five work as CBR volunteers with COMBRA.
Simon Lutaya of Bwaise
At Bwaise itself, COMBRA has set up a clinic to attend to people with disabilities. At the time of the author's visit there, the clinic had 78 PWDs and 160 elderly people on its register. Next to the clinic is a Day Centre -Tuesdays for the elderly, and Thursdays for the PWDs. Whilst some are engaged in handicraft at the day Centre, others come to talk, to dance and to make music. A physiotherapist comes once a week to give therapy and to monitor progress. Friday is the day of referrals, when some of the more serious cases are taken, by bus or by taxi, to the nearby Mulago hospital.
To witness one of their "successes" they took the author to visit Simon Lutaya. He was born prematurely and later developed cerebral palsy. For nine years he was not even brought outside the house. He is now 14, goes to school, and writes his name using his toes. He now has a wheel-chair, and although, with his father dead and his mother sick, the future does not look assured, Simon exudes a spirit of amazing self-confidence.
Among COMBRA's successes are the following:
· Early identification of problems
· The outreach clinic
· The referral system
· A change in the attitude of the community
· Building a sense of hope and confidence among the PWDs
· Integration of disabled children in mainstream schools
· Promoting sustainable income generating activities
At the Entebbe Workshop the issue of CBR generated much discussion. Since many of the participants had hands-on experience with CBR projects in their own countries, they were able to summarise their experience thus:
Positive achievements of CBR
· It has helped create self employment
· It has built up self-confidence and reduced dependence and begging
· It has positively changed the attitude of the community
· It has stimulated development
· It has integrated PWDs into the social and economic development
· It has encouraged funders to support more community based activities.
· It has enabled people with disabilities to display their talents within the society while participating in income generating activities.
· It has utilized locally available resources
· It has helped transfer skills and appropriate technology
· It has created sustainability by developing society's capability.
· It has reached the hitherto unreached.
What then of its limitations?
Most of the limitations arise, the participants suggested, because of the general level of Poverty and literacy in many countries in Africa. Given these, if not properly planned and implemented, CBR could develop several problems. The following are some of these.
· It could turn into a top-down and technicist project.
· Imposing the project on the PWDs (by community leaders, professionals, or the donors) without their active participation and involvement
· CBR may not be the priority of the community and may compete for scarce resources, and this may therefore constrain its viability.
· Many CBR programmes focus on the medical model with emphasis on children's disabilities. The vocational, educational and employment components get neglected.
· Within integrated groups, suspicion may exist among the PWDs that they are being manipulated and used by the non-disabled persons.
· Lack of funding/resources for CBR projects could create problems of sustainability.
· Donor resources can undermine local initiatives and resources.
· Politically motivated projects aimed at securing political support could affect CBR negatively - [e.g. a wheel chair donated to a deaf person by a politician who had no knowledge of the latter's needs.]
· Difficulty of coordination arising out of lack of cooperation from the individual, family or the community.
· Difficulty of sourcing expensive appliances needed to fully integrate the PWDs into integrated projects.
· Duplication of community services by various extension workers from other programmes.
· Insufficient number of adequately trained CBR community workers could lead to poor conception, implementation and supervision of projects.
· CBR is still viewed by many DPOs as a foreign concept, and this has made its acceptance difficult.
In spite of the limitations, CBR, most people agreed, is still the most cost effective approach. It can help facilitate independent living for persons with disabilities drawing on the resources and the support structures of the community. For CBR to be successfully implemented, the following areas of activity and concern have to be built into the CBR-based programmes.
· Vocational training and loan schemes for income generating activities of the PWDs so that CBR projects can be self-sustaining. [The Mawotto project is a good instance of this.]
· Assistive aids need to be procured without straining the resources of the community whilst not creating a dependency syndrome.
· Awareness campaigns within the community can help to avoid top-down and technicist approaches.
· Self-representation by persons with disabilities is an important element in project planning. They should include the severely disabled people or their carets, who are often left out of project planning.
· CBR projects should be backed by affirmative policies and strong legal mechanisms for enforcement.
· As far as possible CBR should be based on the use of local resources, with outside assistance considered as supplementary.
A. For Persons with Disability
· Organise themselves to advance their own case
· Consider the possibilities of CBR with an open mind
· Develop leadership amongst themselves
· Fight against prejudice and discrimination
· Lobby government to adopt 'WHO and ILO Conventions
· Raise awareness of all those around them on the attitudinal and institutional barriers against their integration
· Overcome fears against prejudices that marginalise them
· Insist on mainstreaming their activities, and not be treated to isolationist programmes
· Insist on the participatory approaches to planning of programmes and projects
· Build broad solidarities for action, and build active networking strategies
B. For the Community:
The community should:
· Encourage progressive change in the attitude towards PWDs. Integration should be sought not for its own sake but also to change the environment. Integration must be undertaken in an interactive manner. The PWDs also have a lot to contribute to the community. It is not a one-sided affair.
· Work towards full participation of the PWDs, so they recognise themselves as part of the community.
· Prepare itself to integrate the PWDs in their regular development efforts. Build upon community institutions. Identify and actively overcome institutional barriers.
· Encourage "Practical skills" among the able-bodied people: to listen to be sensitive to the needs of persons with disabilities to wait to be asked for help, or ask if help is needed to restrain from being overprotective to facilitate accessibility
· Modify physical and architectural aspects of public facilities [e.g. toilets, doorways, switches].
C. For the Government
The government should:
· Facilitate the integration of disabled children in mainstream schools.
· Provide for the training of PWDs with skills that would enable them to live amongst their communities with dignity; and, where possible, this training be integrated with able bodied persons.
· Facilitate the acquisition of appropriate aids for people with disabilities to take on gainful occupation within the communities
· Recognise the work done by (NGOs) in the field of CBR and support their efforts, for example, through enabling them to import equipment and tools without import duties.
· Provide guidelines and monitor the activities of (NGOs)
· Provide adequate backup and referral services in government hospitals and village clinics.
· Provide adequate extension services to CBR projects of disabled peoples that are based on agriculture, livestock management and fishing.
· Provide basic management skills and extension services to PWDs to enable them to run their businesses.
· Empower local authorities with finance and enabling legislation to facilitate CBR programmes.
D. For IGOs, INGOs and (NGOs) working with PWDs
· Be sensitive about matters of concern to the PWDs in their development programmes
· Involve the community in the planning and implementation of development projects.
· Ensure active participation of PWDs in development projects.
· Play a facilitative, not directive, role
· Be cautious about killing local initiative through overfunding or through creating false expectations
· For proper coordination, the local and international (NGOs) need to consult with one another before getting into a CBR project. The consultation must continue on a regular basis.
Some issues for Further Discussion
The communities in Africa are already impoverished as a result of global economic dynamics - such as SAPs and now the effects of the Uruguay Round of trade agreements. How can they and the PWDs who live among them take up these new challenges?
There is need for further discussion on the division of responsibilities between the various stakeholders: the disabled persons themselves, the families, the Government, the local community, the international community, the NGOs, the funders, etc. How can this discussion be facilitated?
How well equipped are NGOs (even those of the disabled persons) to manage CBR programmes? How do we further the empowerment of the PWDs within the NGOs?
Are there specific concerns which women (PWDs and able bodied) in communities with CBR programmes have to address? What are these issues, and how might they be addressed?
How well equipped is the CBR approach in catering for the severely disabled persons, their carets, and other marginalised disabilities?
Does the current CBR training and curriculum cater for adequate