Introduction
Throughout the world, people with disabilities have united in organizations as advocates for their own rights to influence decision-makers in governments and all sectors of society (18). These organizations are known as disabled people's organizations.
Disabled people's organizations have arisen in response to societal barriers that have prevented the equal participation of people with disabilities, and as a reaction against the control of people with disabilities by others. For a long time, people with disabilities have been spoken for by health professionals, family and others without regard for their needs, priorities or choices. People with disabilities are their own best spokespersons and representatives, as they know best their needs and aspirations (19).
Disabled people's organizations usually exist at the regional and national levels e.g. in major cities. They may be “single-disability” organizations and represent individuals with a particular type of impairment, such as a hearing or visual impairment (e.g. country branches of the World Blind Union), or they may be “cross-disability” organizations and inclusive of all people with disabilities (e.g. the National Union of Physical and Mental Handicapped (UNHPM) in Mauritania). In many countries there are also networks of disabled people's organizations, e.g. the Federation of Persons with Disabilities in Burundi. Disabled people's organizations also exist at the international level, e.g. the World Federation of the Deaf, the World Blind Union, Disabled Peoples International; many of these have joined together to form an international network known as the International Disability Alliance (IDA).
Historically CBR programmes and disabled people's organizations have not worked closely together. Disabled people's organizations may be hesitant about working with CBR programmes for a number of reasons, including the fact that, in the past, most CBR programmes were based on a medical model of disability and were run by nondisabled people and professionals, without the active participation of people with disabilities. Also, many CBR programmes have failed to include people with particular impairments, e.g. people with visual or hearing impairments who are priority groups for many disabled people's organizations.
While disabled people's organizations and CBR programmes have differences in their origins and strategies they do share similar goals, e.g. ensuring equal opportunities and social inclusion of disabled people. It is important that both disabled people's organizations and CBR have mutual respect for each other and work towards developing successful partnerships to meet these common goals and ensure the implementation of the Convention on the Rights of Persons with Disabilities (5).
BOX 18India
A real hero
Ladakh is a Himalayan region located in the north of India, where people live in small towns and villages at very high altitudes and in harsh conditions. Life is hard for everyone but particularly for people with disabilities. While development initiatives are not new to the region, disability had never been considered in any development programme until the year 2000, when the Namgyal Institute for People with Disabilities (NIPWD), a nongovernmental organization, was established. The focus of NIPWD was to ensure that disability was mainstreamed into development programmes and that the needs of people with disabilities were met.
People with disabilities have been at the forefront of many of the changes that have occurred in Ladakh. One of them is Mohammed Iqbal, president of PAGIR – the People's Action Group for Inclusion and Rights, which was formed by people with disabilities in Ladakh in 2006. Iqbal spent the first 30 years of his life in an unproductive way, in bed at home, listening to music and chatting with friends, but by the time he was 45 years old (in 2008), had become a successful business man and leader of PAGIR. He had had the courage to move away from the image of a “poor disabled person” to one of a person in control of his environment. Iqbal and his lobby group called the People's Action Group for Inclusion and Rights (PAGIR) is a positive outcome of a seven-year community development process in Ladakh.
One of the key projects of PAGIR is a community managed garbage programme which creates income opportunities for more than 200 disabled people. Mohammad Iqbal says “Our garbage management programme, “Jungwa Shungskyob” in Ladakhi, started as a livelihoods initiative for disabled persons, but has now moved on to handle a serious garbage problem in the city. We collect garbage in huge quantities, reuse, recycle them and give the cleaner environment back to the community. We still have a long way to go in handling the problem to its entirety, but have made a beginning … a beginning where disabled people are leading a garbage drive and generating employment for the larger community.”
NIPWD, DDRC and PAGIR continue to work in the Ladakh region. PAGIR is now the key stakeholder in organizing people with disabilities, empowering them and building their capacity in overcoming poverty through its various income-generation activities. Mohammad Iqbal recently received the CNN-IBN “Real Hero Award”, in Mumbai on 20th March 2010, for PAGIR's outstanding work towards creating an inclusive society.
Goal
CBR programmes and disabled people's organizations work together to ensure the implementation of the Convention on the Rights of Persons with Disabilities and community-based inclusive development.
The role of CBR
The role of CBR is to work in partnership with disabled people's organizations where they exist, and where they do not exist, to provide assistance when requested to support their formation.
Desirable outcomes
CBR programmes and disabled people's organizations work together to plan, implement and monitor new or existing CBR programmes.
Disabled people's organizations support CBR programmes to become more representative and inclusive of people with disabilities.
Disabled people's organizations are motivated to develop and implement CBR programmes in communities where they do not exist.
New disabled people's organizations are formed at the local/community level where they do not exist and are linked to regional and/or national disabled people's organizations.
Key concepts
Disabled people's organizations
Characteristics
Disabled people's organizations are mostly advocacy organizations which work at the regional, national and/or international levels to change policies and ensure equal rights and equal opportunities for people with disabilities. They are formally registered and structured, and usually function like any other organization or establishment. Initially a few people with disabilities come together and form a group of disabled people who work to:
increase membership
draw up a constitution and register as legal entity
form the general body of the organization from the membership
elect a governing body (through the general body)
elect office bearers for the governing body
become part of national or international affiliations and movements.
Membership
Disabled people's organizations promote the “Nothing about us without us” slogan – they are organizations “by”, “for” and “of” people with disabilities. Therefore they are organizations that are controlled by a majority of people with disabilities at the board and membership levels (19). Membership varies depending on the type of organization. “Single-disability” organizations restrict membership to those with a specific impairment, e.g. an association of blind people is a single-disability organization, while “cross-disability” organizations have more inclusive membership, e.g. an association which includes people with hearing, visual, physical and mental impairments.
Depending on the needs, context and opportunity, there may be scope for different types of disabled people's organizations. Deaf people often prefer to have their own organizations rather than joining a cross-disability organization. People with intellectual disability may lack a voice in cross-disability organizations, and therefore prefer to form their own self-advocacy groups, sometimes with appropriate support from people without disabilities. Whatever the form and format of the disabled people's organization, it is important for people with disabilities to set the agenda, and for the organization to be respectful of differences within the disability community, e.g. the need to hear voices of women with disabilities, older people with disabilities.
Self-help groups and disabled people's organizations
The characteristics of self-help groups and disabled people's organizations vary among countries and at times it can be difficult to distinguish the two. For example, in many countries self-help groups are also known as disabled people's organizations, especially where they have joined together and become umbrella organizations. In these CBR guidelines, self-help groups are identified as groups which are established locally, operate on an informal basis, and are focused on addressing the needs of their own members, who may include people both with and without disabilities, e.g. family members. Disabled people's organizations are identified as organizations that are more formally structured, and have majority control by people with disabilities. They usually work on a larger canvas, advocating for human rights and influencing policy and resource allocation.
Partnerships between disabled people's organizations and CBR programmes
Many national and international disabled people's organizations in partnership with United Nations organizations, Member States and civil society organizations played an important role in the development of the Convention on the Rights of Persons with Disabilities (CRPD). While a great achievement, the Rights are meaningless for people with disabilities unless they can be implemented and enforced through meaningful activities and programmes (20). Currently many people with disabilities in low-income countries, especially those living in urban slums and in rural/remote communities, are not receiving the benefit of the Convention.
These CBR guidelines highlight the strong focus CBR has on community-based inclusive development to ensure people with disabilities have equal access to services and opportunities – CBR is a strategy/tool which can contribute to the implementation of the CRPD at community level. While CBR has been viewed in the past as a top–down strategy, new approaches recognize that the participation of people with disabilities is of vital importance to the success of CBR. And while disabled people's organizations have historically focused on disability as a human rights issue, they are now recognizing that disability is also a development issue – in fact many disabled people's organizations have started CBR programmes (21), e.g. in China, India Malawi and Nepal. These developments provide new opportunities for strong and effective partnerships between CBR programmes and disabled people's organizations.
It is possible for CBR and disabled people's organizations to work together to ensure that the benefits of their knowledge, skills and resources reach all people with disabilities, their families and communities. In this way CBR programmes suggest a “Nothing about us without all of us” slogan whereby all stakeholders are involved to ensure that communities become inclusive of people with disabilities. Partnerships will also ensure that both disabled people's organizations and CBR programmes are effective and sustainable in the long term.
Suggested activities
Work together with disabled people's organizations
Both CBR and disabled people's organizations have similar goals and knowledge, experience and resources that they can share for the benefit of people with disabilities and their families. While joint activities have been included in other sections of these CBR guidelines, in summary these activities may include:
CBR programmes involving disabled people's organizations in CBR planning, implementation and monitoring, respecting the concept of “Nothing about us without us” e.g. disabled people's organizations could be involved in the recruitment of CBR personnel;
CBR programmes using disabled people's organizations' representatives and members as resources when providing CBR training and sensitization for government officials, local leaders and service providers in the health, education, livelihood and social sectors;
disabled people's organizations providing training for CBR personnel and self-help group members about the importance of policy, disability rights, and the need for and benefit of advocacy activities;
working together to create joint resources, e.g. training materials and community resource directories for people with disabilities and their family members;
working towards the empowerment of people with disabilities by advocating for the implementation of the Convention on the Rights of Persons with Disabilities.
Ensure access to CBR programmes for members of disabled people's organizations
Many CBR programmes have experience in delivering a range of services. Many members of disabled people's organizations may require these services to enable them to access their basic needs, enjoy their human rights and overcome poverty. CBR programmes can provide support to members of disabled people's organizations by providing access to all CBR activities based on their needs.
Encourage disabled people's organizations to support CBR as a strategy
Disabled people's organizations can support CBR by:
promoting CBR at national and international levels as a strategy to mainstream development and ensure the benefits of the Convention on the Rights of Persons with Disabilities and the Millennium Development Goals reach more people with disabilities;
lobbying for inclusion of the CBR strategy in government policies and programmes and lobbying for the necessary budgetary support;
mobilizing communities by raising awareness about disability and the importance of CBR and encouraging them to participate in all aspects of CBR programmes;
encouraging the formation of self-help groups for people with disabilities in urban slums and rural villages, and assisting in building the capacity of these groups – self-help groups can be the basic building blocks for the formation of disabled people's organizations at the community level;
directly implementing CBR programmes using the CBR matrix.
Support the formation of community-based disabled people's organizations
In many countries, disabled people's organizations are based in big cities and often do not have adequate representation at grass-roots level; however, there are exceptions, including in Bangladesh, El Salvador, South Africa and Uganda. The strength of CBR programmes is that they have direct contact with people with disabilities at the grass-roots level and therefore can play a supportive role for people with disabilities who are interested in forming disabled people's organizations. People with disabilities should themselves lead the development of the disabled people's organization, but CBR personnel can play a vital role in supporting their efforts by:
identifying people with disabilities who are interested in forming their own organization, and ensuring that there is representation from women and children with disabilities, all impairment groups (especially people with severe or multiple impairments), and people from different socioeconomic groups;
providing information about the benefits of forming a disabled people's organization – it is important that a clear distinction is made between the roles and responsibilities of CBR programmes and those of disabled people's organizations, while highlighting how the two can work together;
working in partnership with disabled people's organizations at the national or regional level to organize training workshops to build the capacity of potential local members of disabled people's organizations;
assisting them to: develop their organizational structure, mission, objectives, and plan of action; register with the local authorities; open bank accounts; and complete any other necessary legal formalities;
providing ongoing assistance once the disabled people's organization is formed, e.g. inviting local members to training sessions carried out by CBR programmes so that they can observe how stakeholders (e.g. local leaders) are oriented to disability issues.
