World Bank International Dialogue on Disability and Development
Helsinki, May 29-30, 2003
This report was prepared by the World Bank's Office of the Advisor on Disability and Development and further information is available via email from JHeumann@worldbank.org.
Executive Summary
The World Bank sponsored an informal two-day dialogue on new ways to increase inclusion of disabled children and adults in developing countries. Meeting participants were from intergovernmental organizations, development agencies, international disability organizations, national disability organizations dedicated to development, and grassroots disability organizations in developing countries.
Participants were invited in recognition of their leadership in and commitment to improving disability and development practices around the world. Many of the leaders work at international organizations with hundreds of member groups, many based in developing countries.
The participants generally agreed that serious consideration should be given to increasing resources for disability and development and improving coordination among stakeholders by creating a new institutional mechanism, some sort of collaborative group. The World Bank agreed to explore this idea with a wider circle of donors and other stakeholders at one or more meetings in the fall of 2003.
The dialogue was organized in collaboration with the Threshhold Association, a Finnish nongovernmental organization working in disability and development, and Stakes, Finland's Research and Development Centre for Health and Welfare.
The group of approximately 40 participants from Africa, the Americas, Asia and Europe identified gaps and barriers, reviewed established patterns of collaboration, discussed strengths and weaknesses of current approaches to disability and development, reported on new studies and resources, and prioritized strategies to make a significant difference.
Achievements
The group reviewed the achievements of the last quarter century of work in disability and development, agreeing that by working together internationally, it has been possible to introduce a new paradigm by approaching the key issues confronting the disabled population within a human rights framework. Gradually, with collaborative efforts on the part of many stakeholders present at the meeting, a social model of disability is replacing the previous medical model. In essence the medical model places the locus of responsibility for disability on the individual, requiring that the disabled individual adjust and adapt to society as it is. The social model shifts the locus of responsibility for adaptation to society, in recognition that the primary barriers faced by disabled children and adults are those erected by prejudice, discrimination and by inaccessible environments planned for the mythical "average person."
The momentum of support for these new approaches is growing around the world, as more and more governments take responsibility for social change to enable the approximately 10% of their population with disabilities to take part in national socio-economic development. Previously closed doors are opening in even the poorest countries where disabled individuals are being named as ministers, elected to parliaments and appointed to human rights commissions, new disability policy offices are being established at the centers of governmental power and new or rewritten constitutions are outlawing discrimination based on disability.
Meeting participants stated that one of the purposes of coming together around the table was to identify joint strategies and practical approaches to supporting and expanding on these developments by building inclusion into development policies and practices.
Gaps and barriers
While noting "islands of excellence," participants agreed that in general the last 20-25 years of work in disability and development had not measurably improved the economic situation of the estimated 400 million disabled children and adults living in developing countries. The vast majority of this population occupy the lowest rung of the socio-economic ladder, are among the poorest of the poor and are rarely reached by development projects
The disability and development landscape has been characterized mainly by:
- Small scale pilot projects scattered throughout selected developing countries, funded by external donors;
- Collapse of projects when external aid cycle is completed;
- Infusion of aid and new projects in countries in current favor with development agencies and investment policies, followed by abandonment when attention is refocused to other countries;
- Isolation of disability and development projects from mainstream development programs and goals of a particular country;
- Pervasiveness of prevention as the development community's response to disability;
- Accessibility not integrated into mainstream development projects
- Lack of shared information (on domestic or international basis) about objectives and results of disability projects, so that, in effect, each project is developed (and often dies) in a vacuum.
De-coupling of disability from development mainstream
So, for example, while the development community spent a lot of effort in the last decade experimenting with ways to implement micro-credit schemes, disabled individuals were left out of these efforts. At the same time, some small micro-credit projects were begun by disabled people's organizations, but these were external to and isolated from those countries' larger scale micro-credit initiatives and did not benefit from the training, advice, support and review mechanisms offered by the development community.
In general, the disabled population is not perceived as an integral segment of the population targeted as recipients of domestic aid and development programs, regardless if the program is aimed at improving national levels of literacy, education or health, or increasing skills and resources for self-sufficiency.
A result of this perception has been that numerous governments in developing countries assign to foreign aid programs the responsibility for any measure to improve the situation of the disabled child or adult population. The message given is that including the disabled population within development programs is a luxury beyond the capacity of governmental budgets in poverty stricken countries. Therefore, it is possible to trace decades of bilateral or international development aid infusion into, for example, Community Based Rehabilitation, with little evidence of growth in parallel domestic support.
Prevention still dominant response to disability
The second major barrier to the improvement of the situation of the disability population in poor countries identified by the group was that the dominant interest of the international donor community in disability for the last few decades has been and is in massive prevention campaigns. As necessary and laudable that these programs are, one unintended result has been that they siphon development attention from the already existing disabled children and adults who comprise at least 10% of any population.
For example, as a result of the largest campaigns with huge infusions of development aid: 1) it is well known that the globe is close to seeing the last of polio, but there is no international campaign to ensure that children and young people with mobility impairments are attending school or receiving mobility equipment; 2) most are aware that large distributions of Vitamin A are successfully preventing blindness, but no comparable efforts exist to ensure that the millions of blind people in developing countries are being taught Braille or orientation skills; 3) vaccination is widespread against diseases which can cause deafness through high fevers, yet it seems to be no one's responsibility to support the deaf population to learn sign language or become literate; and 4) there are on-going international aid programs to iodize salt and reduce malnutrition which can cause cognitive impairments, especially in infants and children, but no similar campaigns to introduce early intervention techniques with those who already have learning disabilities.
Most development and intergovernmental agencies spend all their "disability dollars" on the prevention side of the equation and, thus far, have not been convinced of the value of investing in the education and training of the population who already have disabilities. Certainly, the cost-benefit of disability prevention programs has been well established, while the obviously significant economic costs of excluding at least one tenth of the population from development has yet to be precisely calculated.
Accessibility still an unfamiliar concept in development community
Another barrier identified by the participants was that whether a development project involved construction or training or education or social marketing and mobilization or support for strengthening of civil society, there is still little across the board understanding of how to make these initiatives accessible to and therefore welcoming of the disabled population.
The disability community prefers to utilize the same services and opportunities available to the targeted populations, knowing that separate services not only can create ghettos but also demand duplication of scarce funds and staff. A high priority is to establish a core set of accessibility standards for development planning and projects, with the ultimate objective of making all development work accessible through universal design. Such a set of standards would clarify how to plan for accessibility, such as the provision of ramps or level thresholds for people with mobility impairments, sign language interpretation for those who are deaf and information in Braille or on tape for those who are blind.
One clear message to emerge was that programs must be both architecturally and programmatically accessible for real progress to occur: the doors must be truly open, not just the right width.
A first step might be to produce universal design guidelines to support the expansion of the Education for All initiative to physically and mentally disabled pupils in developing countries. By some estimates, the vast majority of disabled people in developing countries is illiterate, and would clearly benefit from access to education. In fact, as many grassroots disability organizations state, education affords disabled persons their only chance to escape a life of begging.
Lack of shared information on effective practices
Participants emphasized how much they appreciated this rare opportunity to compare development efforts in the disability sphere and to analyze strengths and weaknesses on an international level from the varying perspectives of donors, international disability organizations and grassroots groups.
Participants also stated that the lack of opportunity to have a substantive exchange among stakeholders has contributed to a weak disability message being projected to the development community, as well as inhibiting the ability to collaborate and cooperate effectively to utilize what funds have been available.
The importance was stressed of creating opportunities to work together to develop a common knowledge base of what works and what doesn't in the disability and development arena. As an example of how the current level of fragmentation can impede progress, the group was reminded how every few years the same bad idea emerges of shipping used mobility aids, especially wheelchairs, from industrialized to developing countries. The disability community is aware that this practice is unworkable because the equipment is not designed for the rougher terrain of developing countries and is shortly broken and abandoned, while, at the same time, the infusion of free equipment destroys the market for local production. Yet, the development community invariably supports these initiatives, attracted by their low cost and reliance on third party charity. A stronger, more collaborative disability and development initiative could convey evidence-based messages about effective and ineffective practice, and build a knowledge base available to all.
Importance of capacity building
Essentially, the disability community is not schooled in the language and logic of development work and the development community is unfamiliar with the tenets and priorities of the disability community. The resulting dissonance could be greatly reduced by capacity building on both sides: a deeper dialogue on key issues coupled with short cross-training opportunities could go a long way towards bridging the gaps.
Need for new collaborative group
Participants agreed that the priorities of a new collaborative group would be to find new funds for disability and development work and to organize regular communications and face to face meetings among the main stakeholders involved in disability and development policies and practices.
It was acknowledged that other networks already existed to encourage communication among regions (e.g., Atlas Alliance, Nordic, ESCAP), between the intergovernmental UN bodies (annual interagency meeting on disability), and disability and development groups headquartered in Europe (IDDC) and around the world (IWGDD). The new group would augment these networks and is not intended to replace them.
Tackling social change
In addition to searching out new funds, the purposes of the collaborative group would be to review effective and ineffective practices in involving poor disabled children and adults in capacity building projects and poverty reduction strategies; to identify innovation and success for replication and scaling up service delivery; and to reduce duplication and redouble collaboration among the main stakeholders so that greatly increased numbers of disabled citizens could take part in civil society. Until now, disability and development projects have mostly been small-scale and on pilot levels, because the will and funding to tackle social change on a larger scale has been absent.
Challenging the status quo
In short, the charge of the group would be to work to change the status quo, where the estimated 400 million people with disabilities now living in developing countries are eking out marginal existences, unreached and overlooked by Poverty Reduction Strategies (PRSP), UN Millennium Development Goals or outreach to the "poorest of the poor." One approach may be to add a "disability lens" to development projects in the same way a gender lens has been added gradually over the last 20 years.
Additional points
The World Bank advisor on disability and development was requested to explore possibilities for subsequent meetings of disability and development stakeholders that would go into more detailed focus on areas for discussion and collaboration.
The meeting also welcomed the offer from the representative of Italy's Office of Foreign Affairs to organize a high level meeting on disability and development issues during the Italian Presidency of the European Union, July-December 2003, the second half of the European Year of Disabled Persons.
Representatives of donor agencies recommended the organization of bilateral and multilateral meetings with donors, including governments, foundations and other potential partners for an international disability and development effort.
Participants representing Disabled People's Organizations (DPOs) and Non Governmental Organizations (NGOs) recommended that future meetings also take place in developing countries, involving governments, DPOs, NGOs, development agencies and other stakeholders to ensure broad consultation and coordination in the field.
It was recommended that the World Bank, in collaboration with other agencies, start collecting information on how governments and other donors are planning, monitoring and financing disability and development activities, as well as their related policy statements.
The group also recommended that the World Bank and other interested stakeholders begin to explore support for this new collaborative approach during the UN Ad Hoc Committee Meetings on an International Disability Convention in June, as well as in other meetings related to disability or development.
Summary and Next Steps
The approximately 40 participants in the informal dialogue on disability and development were in general agreement that the present international approach is strengthening the human rights of the estimated 400 million disabled children and adults living in developing countries, but is doing little to relieve their poverty. An economic development agenda must be formulated, one that harmonizes and with and complements the human rights agenda. The possibility of a new financial and institutional mechanism to formulate and implement such an agenda should be explored.
There was general agreement that the disability and development landscape has been characterized by small, fragmented, unsustainable projects; a disconnect between disability and mainstream development efforts; a "flavor of the month" approach to country focus; preoccupation with prevention, to the exclusion of rehabilitation and inclusion; "exclusion by design" in mainstream projects; and poor coordination, evaluation and knowledge-sharing.
There was interest in and support for a new international financial and institutional mechanism that would formulate an economic agenda for disability and develop, mobilize resources from donors, and coordinate their application. This new collaborative mechanism would bring together bilateral and multilateral donors, international and national disability nongovernmental organizations, developing country governments and institutions, and practitioners. The World Bank agreed to pursue this concept by convening one or more meetings in the fall of 2003. These meetings would engage a wide variety of donors, not just those already active in the field, and a broader representation of developing countries and NGOs.
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