by Joshua T. Malinga, 2003,
Secretary General: Pan African Federation of the Disabled (PAFOD),
Past World Chairperson: Disabled Peoples' International (DPI).
4.1. DPI Resolutions on Independent Living
Independent Living in Developing Countries
Independent Living – Creating Regional & Global Network
Independent Living – Human Rights
Independent Living – Personnel Assistance and Other Supportive Services
Disabled people in Africa are being crushed by wars, violence, conflicts, epidemics and diseases such as HIV\AIDS, hunger (starvation), poverty and powerlessness. These conflicts have produced more people with disabilities in Africa and the world over. However, the movement of people with disabilities in Africa has adopted the philosophy of Independent Living and is working towards the fulfillment of the philosophy of Independent Living.
It should be noted that Africa has an estimated population of about 60 million people with varying disabilities. All these people are of all ages and have all kinds of disabilities. They are also at various levels of development with some still not having the opportunity to attend school due to a number of socio-economic factors, some political factors, negative attitudes, some are in various levels of education and training; adult people with disabilities have learnt skills of daily living some are still trying to learn and some have very negative attitudes towards their disabilities.
Paraplegics and other severely disabled people do not live under hospitalization. The existing facilities do not accommodate them hence they live in their local communities. These communities do not have readily available facilities for use by those people with varying disabilities. Disability is a death and survival issue and disabled people are busy trying to make out a living under these conditions. Because of these situations, we need a proper conceptualization and practice of Independent living in Africa.
In Africa the disabled people see everything they are doing as liberation from an oppressive society. Their environment is such that they are not considered as part of those societies. They want the creation of supportive systems and institutions, which will lead to independent living for the majority of people with disabilities.
They will fight day and night until they are liberated and get included in the development process. Most of the organizations of people with disabilities are thus formed around a background of wanting to fight the existing discriminatory systems to the establishment of inclusive systems. The lobbying by these organizations of people with disabilities has been intensified at the highest levels in the respective countries.
There is no fundamental difference between the approach to Independent living from those in developing countries and African countries in particular and those in the Western World or developed world. Independent Living in Africa is an important concept of being in charge of our destiny, and of having power and control in our situation, also of being involved in the decision-making of matters that concern us, the process of creating barrier free environments and being able to control one’s environment take the center stage. Independent Living in Africa is the philosophy that guides policies of the Movement, the practical issues, the problems they deal with in society and the projects they engage in which are designed to promote the philosophy of Independent Living. Everything is reflected in their activities.
Despite all these set backs including others not mentioned, the concept of Independent Living in Africa is well known and is being implemented within the existing environmental factors. In general Independent Living has been adopted to suit certain conditions prevailing in Africa. The Movement of people with disabilities in Africa has continued to show that the grassroots members in their own local environment can implement the philosophy of Independent Living.
I must hasten to indicate that Independent Living in Africa, as I indicated earlier on, is a concept of empowerment, a concept of power and controlling our lives, and a concept of taking charge of our lives! This would lead to people with disabilities being able to contribute to society as service providers and not only as receivers of charity. Thus, therefore, the process of empowerment of people with disabilities is achieved at the end of the day.
Independent Living is not a package of services, it is not about personal assistance, and it is not about employing people either. It is not the package of services that are available for disabled persons to hire personal assistants, to buy a wheelchair and assistive devices. It is about a lot of things including mobility allowances and all the allowances that can be available in the Western World which include the financial resources, human and the appropriate infrastructure for use by those with varying disabilities.
The disabled are operating from the point where there are no services and that is why they are fighting to be treated as human beings like other people throughout Africa. The general trend is that people with disabilities are not treated as full citizens of any country in Africa. It is just “known” that they exist but have no say in the decision making at any level i.e. including the family and that is about it. This scenario has tended to put a lot of pressure on the part of those with disabilities since they feel they should be part of any given society and is ready to participate fully in the developmental processes in existence at any given time.
They promote the philosophy of Independent Living by the activities they engage in for instance they engage in activities that try to change attitudes of everybody without a disability towards people with disabilities and vice versa; they engage in income generation activities and employment creation activities, they engage in various sporting disciplines, they meet regularly in consumer groups. These activities are leading to Independent Living through employment of those with disabilities, participating in sporting activities for life and generate income for their organizations. They also engage in activities that will make them to be treated positively and/or with dignity in society i.e. in Africa they have done very well in political organizations and organizational development and mobilization for social change. These principles form the basis of the African initiative towards Independent Living.
The above clearly demonstrates that Independent Living in Africa as a philosophy/ concept has been received. However, it was adopted to meet, suit the conditions prevailing throughout the continent. It was not taken as a package for development in Africa. It should be noted from above all people with disability in Africa still engage themselves in such basic activities as basketry, carpentry, shoe mending, sheltered employment, etc., as a way of achieving Independent Living.
The people with disabilities in Africa through their representative disabled people’s organizations (DPOs) have designed their activities of daily living (ADLs) in such a way that they lead to Independent Living. These activities are well documented by the respective disabled peoples' organizations (DPOs) e.g. SHARP in the RSA has details of the activities being done by individual people with disabilities living in Soweto. This therefore helps in follow up activities at one’s home ensuring that adjustments are made to meet the presenting disability of the respective member.
Many people with disabilities in Africa are engaged in different activities such as wheelchair assembly, repairing, programmes where they go out to talk and give lectures to colleges, schools, universities, residents, public meetings. This is all done to enable their non-disabled counterparts to understand and be accepted in society. This is leading to full participation by the disabled at various levels of development in society. Through these activities disabled people are now being treated differently and their issues as people with disabilities are beginning to be mainstreamed in all government development programmes.
These activities use materials readily available in their local environment with the exception of few activities e.g. wheelchair assembly heavily relies on components being imported from overseas. The disabled people engaged in these activities will gain employment to one or two people with disabilities. The activities are basically economic and are easily done by people with disabilities themselves. All these activities were designed to lead to some form of Independent Living.
The American and the European approaches are based on service provision and have been commercialized. These centers have no membership. The Greenwich Independent Living center is a good example of a membership-based approach. The community owns the center but is run on commercial basis. The rest are individuals, companies and parastatals, which are basically commercial entities for a specific consumer group i.e. the people with disabilities that might need the services offered by these facilities.
The developed world model has tendered to be a well-developed package supported by a lot of resources be they human, financial and material. The majority of the population of people with disabilities in these countries is in towns where infrastructure is fairly easy to manage. The people with disabilities are then given allowances to pay for the attendance in these centers throughout the year and some of them are assisted to develop similar facilities in their home. They are even assisted to pay for attendances and the individual persons with varying disabilities might require other related services, by their governments. There are even Disability Grants paid to individual members as social safety nets.
The African experience has tended to take the political route. Independent Living thus is based on social, cultural change amongst the disabled themselves as in line with the philosophy of Independent Living. The Movement of the disabled thus takes the role of monitoring, implementing and evaluation of all the activities of Independent Living in the local communities at grassroots levels. These activities are also designed to empower people with disabilities through economic and political change.
I know of no country in Africa, which is not working on some policy or legislation to protect and promote the rights of people with disabilities. However, it takes a lot of lobbying by the disabled for the legislation(s) or policies to be developed by their governments. It should be noted that some African governments do take issues of people with disabilities seriously while others are taking a casual approach. Since people with disabilities started organizing themselves into Movements, Africa has never been the same. Below readers can find some African countries descriptions in which are shown experiences of political activities of people with disability.
One aspect of Independent Living that the disabled also feel is important to them is peer counselling. It is a very important training programme which has been developed in a number of countries e.g. South Africa, Zimbabwe and elsewhere, where if a person who is newly disabled is in a great depression, has no-one to talk to; he or she thinks his or her life is shuttered. Peer counsellors would then come in and assist them to think positively about their situation. They make them become aware that life is still the same and they are able to do the same things in different ways and that disability is an alternative way of living.
One of the systems the disabled have advocated for is a revolutionary change to society and not to treat disability as a welfare or an NGO matter. They advocate that society must create community support systems, which existed before colonization where we had extended families and everybody belonged to his/her community, everybody belonged to his/her village and everybody belonged to each other. This did reduce the severity of the living conditions of people with disabilities in their respective communities. Disability was taken as a community issue and called for a concerted effort from amongst the members to dealing with it. It produced some form of indigenous independent living for the disabled in Africa.
These systems were destroyed by industrialization and colonization in Africa. Disability was sort of commercialized by imported models, which did not take into account what the local Africans were doing in the absence of their models. Disabled people are now advocating for not only working with our governments but that societies should create support systems, for disabled people. They also advocate for home grown models of independent living, which should be accommodative of the local environment found in Africa.
They are getting away from institutionalization of disabled people and creating care systems for them. They are advocating for the creation of what are called support workers for disabled people and they should be placed in strategic places so that they provide the support to disabled people within the community and the society they live in.
The following are some of the examples of the African initiative towards implementing the philosophy of Independent Living. The initiatives are from individuals, Disabled Peoples' Organizations national and regional assemblies throughout Africa. A deliberate effort has been made to provide statistical data in this regard.
In South Africa there are about 4 million people with varying disabilities of all ages. There is a Movement of the disabled under the umbrella of Disabled People of South Africa (DPSA). There are quite a number of national organizations working under DPSA. There are about fifteen (15) Members of Parliament in the Republic of South Africa(RSA) which were gained through the activities of these organizations. Organizations such as SHARP are organized around an Income Generating Project leading to Independent Living for many people with disabilities in Soweto and the rest of RSA. In Alexandra Township, people with disabilities engage in a consumer-controlled approach where those with severe disabilities engage the services of the non-disabled persons then pay them later. This has led to Independent Living for the majority of those with disabilities in that area.
Malawi has a Minister of the Disabled who is a woman with a disability herself. There is the Federation of Organization of the Disabled in Malawi and a population of about 1.1 million people with disabilities of all ages in Malawi. The national assembly is championing activities leading to Independent Living. These activities are done through training of the grassroots membership and are designed to lead to Independent Living by the people with disabilities.
In Uganda there are over a thousand people with disabilities who are political leaders of various levels of government. These levels include the village levels, district, provincial, local, national levels and there is a Ministry of the Disabled People who is disabled herself.**?** The concept of training of trainers has been adopted and Independent Living is achieved through training of members in activities of daily living designed to lead to Independent Living.
In Namibia there is one disabled person who has been appointed as an advisor to the government on disability issues. The Movement of the Disabled has been championing for this and more for the local disabled people’s organizations that will be tasked to monitor and follow up on the progress with regards to the programmes and projects for Independent Living.
In Mozambique a person with a disability was appointed to be the advisor to government on disability issues. FAMOD the national assembly in Mozambique has been working very hard to promote the inclusion of the disabled in decision-making positions of that country. The population of people with disabilities in Mozambique is around 1.5 million. Their major approach being the implementation of projects leading to Independent Living for the individual disabled person.
The Tanzanian approach has not been very different from other African states. It has also been the use the political route to gain Independent Living for its members in their local environment. This has included the area of education and training as evidenced by the Folka schools programme between the Tanzanian government and the Swedish government. In this programme, young people with varying disabilities were offered the opportunity to learn in a barrier free environment. Where specialist tutors offer even tuition and is tailor made to meet the individual needs the individuals with various disabilities.
In Angola, there are a lot of initiatives designed to involve the disabled in various programmes and projects. One of the programmes involves demining affected areas by people with disabilities as an employment creation leading Independent Living for the many disabled Angolans. The Movement of the Disabled in Angola is also promulgating the concept of Independent Living. The Movement is working hand in hand with the government in its endeavour to formalize the concept of Independent Living. Some of the activities/ projects also include the traditions ones i.e. basketry, shoe repairs etc.
In Zimbabwe, Independent Living is consumer controlled and also evolves around programmes and projects. The population of people with disabilities is around 1.4 million and most of them are based/ stay in rural areas. The national assembly, the Zimbabwe Federation of the Disabled (ZIFOD) has been championing the promotion of Independent Living amongst the national organizations as a philosophy towards the empowerment of the disabled. There are such projects as RESCU - a wheelchair manufacturing workshop, LOREWO - a wheelchair repair and assembly workshop, Freedom Supermarket – a retail dealer’s general shop. Richwood Park – a disabled sports facility. There are also sheltered workshops run by the disabled in the country.
Zimbabwe has one Member of Parliament who was appointed from the Movement and is herself disabled. The Movement is currently working towards the increase of the number of MPs and the establishment of desk in the President’s office. The writer is a member of the Supreme policy making body of the ruling party in Zimbabwe responsible for developing policies and the legislation to improve the quality of life of disabled people. I am also the Chairman of the Zimbabwe National Disability Board which implements programmes, policies and legislation provisions for the disabled people in the country.
The above clearly demonstrate that Independent Living in Africa is basically in theory form and is still in its rudimental stages due to a number of factors which include the following: lack of resources, lack of spiritual commitment by those in authority, the lack of exposure on disability issues on the part of decision makers and lack of exposure on disability issues on the part of the disability leadership on Independent Living. However, as people with disabilities we will continue lobbying for Independent Living in Africa to be formalized and demand will be put on African governments to facilitate Independent Living philosophy through political support.
It should be noted that the African approach has evolved around political organization, organizational development and mainstreaming. These approaches did yield a lot of positive results for people with disabilities in Africa. These include the increasing number of appointments of people with disabilities into decision-making positions across Africa and the current discussions going on disability by different governments including the development of policies on disability in most of those countries.
The Independent Living philosophy is quite understood by many in Africa but I think what is missing is acknowledgement of its existence by some national assemblies of African states. The tendency is of adopting a package from the developed world and not takes off from the existing to the new models. The realization by most people with disabilities in Africa through their groupings is a clear testimony that there is need to more a step further and educate the disabled on the linkages that exist between their programmes/ activities of daily livings (ADIs) and Independent Living.
The development of various pieces of disability legislations by various African governments should be commented. However there should be deliberate efforts to make these legislations contain the Independent Living philosophy thus designed to empower citizens with disabilities live independently in their own countries. The various people with disabilities in various African countries appointed to advise governments would also take the role/ challenge of monitoring and evaluating the implementation of the Independent Living philosophy by African governments.
Independent livings as a philosophy in Africa has been widely accepted in Africa and countries are busy formulating policies that are intended to empower people with disabilities enabling them to live independently. However, the philosophy pauses a lot of challenges on the part of the governments in their endeavors to create environments conducive to the development of independent living conditions.
· There is need to develop material for use for the implementation of the Independent Living philosophy for use by various African countries. The policy will act as guidelines for the Independent Living in Africa given the African experience to date and the conditions prevailing all around Africa.
· The need to carry out research and developing an African model of Independent Living philosophy. The research would look into other world models; the African models then blend them to produce an African model of Independent Living.
· The need to mobilise resources for the Independent Living African model.
The resource would cover/include the human, financial and material resources. This area requires a lot of support and research would establish whether to adopt the Western models or the taping of the available resources and commercial them.
· The need to establish regional Independent Living centres considering that the majority of people with disabilities live in the rural areas in various African states. The development of these centers for Independent Living will have to take into account the above or consider developing models that would be easily accessible to all people with disabilities even if they live in rural areas or stay in town.
· The need to document the African initiative towards achieving Independent Living using basic available resources. Documents of how the different countries have approached Independent Living could be developed or even put on the world wide web. The current scenario would sought of suggest that Africans have not done much on Independent Living and yet some of them have done quite a lot, some have not done much and some are yet to do something.
· The need to develop a fund to support the African Independent Living initiative in view of sustaining it.
The fund could be part of the existing financial institutions e.g. The African Development Bank or the establishment of different fund. The details of the fund maybe developed under the African Union grouping including how the fund would be funded and it would sustain itself.
· The conceptualisation of Independent Living as a philosophy by the people with disabilities in Africa through their organizations, national assemblies and finally the regional assembly.
Most Disabled People’s Organizations do not seem to see their activities as designed towards achieving Independent Living. They only see them as activities of empowering people with disabilities especially their members. Yet one closely studies their activities they are developed to lead to Independent Living amongst people with disabilities. Hence the important aspect is the paradigm shift amongst the people with disabilities to realise that all their programmes/ activities are designed towards Independent Living for them.
· The need to blend the developed world model of Independent Living and the African model of independent Living. This would call for a well researched approach so that a more relevant and user friendly model of Independent Living would be developed for African people with disabilities. If well organised, the model could be used by other developing countries outside Africa.
Disabled People International (DPI) held its 6th World Assembly in Sapporo (Japan) on last October 2002 (readers can find the Sapporo Declaration and Sapporo Platform as an annex to this book). We would like to mention here the Sapporo resolutions about Independent Living with relation to different issues. We consider that this resolutions have a big force to consolidate Independent Living in Africa and other regions or countries which are coming to this Movement.
Independent Living in Developing Countries
1. We recommend that Disabled People’s International promote Independent Living in countries where suitable and prevailing economic circumstances would warrant doing so.
2. We recommend that DPI help explain that Independent Living is not expensive, that it does not necessarily run contrary to the beliefs of some cultures which view the promotion of living alone for family members with disabilities as unacceptable, and that the concept of Independent Living can be modified to suit certain cultural requirements.
3. We recommend that DPI promote collaborative efforts between and among different stakeholders and interest groups to implement Independent Living in member countries, with the intention to inclusion of women and girls with disabilities in such initiatives.
Independent Living – Creating Regional & Global Network
1. We recommend that DPI promote a shared global concept of Independent Living and disseminate IL information globally, using tools such as the Internet in all official DPI languages and media formats.
2. We recommend that DPI promote IL in national and / or international development plans, drawing attention to the contribution of IL services to the social and economic inclusion of persons with disabilities.
3. We recommend that DPI support regional IL networks within the shared global concept of IL.
Independent Living – Human Rights
1. We recommend that DPI lobby for global binding anti – discrimination legislation to protect the human and civil rights of all people with disabilities.
2. We recommend that DPI undertake an education campaign to inform persons with disabilities and others on the concept of Independent Living and its application within their countries.
3. We recommend that DPI support the concept of international IL exchange programmes with particular attention to cross – disability inclusion of all persons with disabilities in order to promote the development of cross – disability IL programs.
Independent Living – Personnel Assistance and Other Supportive Services
1. We commit to creating societies, international, national and local, which will enable people with disabilities to live with confidence and dignity based on Independent Living.
2. We recommend that DPI, in collaboration with national governments, work towards total inclusion by ensuring accessibility to the environment and employment.
3. We propose that DPI provide direct financial assistance to support services worldwide in order to help persons with disabilities realize their full potential.
Background: After the realisation and numerous studies carried out, it was discovered that there is great need for rehabilitation services and assistive devices for people with disabilities in many low income countries. It was also observed that the weak economies of those countries do hamper the implementations of some UN Resolutions such as the Standard Rules for Equalisation of Opportunities for People with disabilities.
Thus the LOREWO concept was developed in order to redress some of these short comings. It should be noted that assistive devices and services needed for an Independent life will release the human resources of people with disabilities to the benefit not only for the persons themselves, but to the whole society.
Activities/ Services: The main services provided are: - receive components of wheelchair and other selected assistive devices from abroad. - local manufacturing of selected assistive devices. - Local assembly of selected assistive devices - adjustments and adaptions of assistive devices - repair and maintenance of assistive devices. - training of the users of the devices and their caretakers - follow up on the progress. - back up.
Structure: Summary of the LOREWO structure in Zimbabwe
Management Board - Consultant
Human and Financial Resources
Currently, LOREWO, Zimbabwe has seven employees. The LOREWO Zimbabwe was established in 1999 with initial funding from UNDP / UNOPS (1999-2000) then NORAD/ Atlas Alliance (2001-2003)
CONCLUSION: This centre is run by people with varying disabilities and these men and women are providing a service to the society. They are also able to work for themselves , fund for their families and provide a very essential service to the many disabled people in Bulawayo and Zimbabwe in general.
Parts available in English from the forthcoming English version of: Alonso, J. Vidal Garcia. 2003. "El Movimiento de Vida Independiente, Experiencias Internacionales."("The Independent Living Movement: International Experiences.") Internet publication URL: www.independentliving.org/docs6/alonso2003.pdf (In Spanish, PDF, 1.46 MB).