9. Engaging with disabled people's organisations in development cooperation

Introduction

Rule 18 of the United Nations Standard Rules on the Equalization of Opportunities for Persons with Disabilities (1994) urges states to recognise disabled people at all levels of government. It also says that DPOs should be encouraged and financially supported to do this. More than 10 years on and, with a few exceptions, DPOs throughout the world, but especially in the South, are still having to fight to survive, let alone to have their voices heard by those in power.

Why this is the case and what can be done about it are extremely important questions, for development agencies and governments are increasingly being encouraged from a number of quarters to work more closely with DPOs. This is consistent both with a human rights approach to development that promotes the need for disabled people to speak for themselves, and the new World Bank/IMF aid instruments such as Poverty Reduction Strategy Papers (PRSPs) which call for the active participation of civil society organisations (CSOs) in formulating national plans to tackle poverty.

The challenges facing DPOs in development figure prominently in almost all the work carried out under the Disability KaR Programme, as did recommendations for how these could be overcome. This section offers a selection of the main findings.

Challenges for DPOs

In the Programme research, far and away the most consistently mentioned difficulty for DPOs was funding. This applied both to Northern and Southern DPOs, but was more acute for the latter. It was, for example, highlighted by DPOs at the Disability KaR roundtables in Malawi and India and came up in one form or another in almost every research paper.

This was not simply a question of money, but what the DPOs had to do to obtain it. For example, most relied on tightly-conditional project funding, the targeted nature of which often created problems for sustained organisational development. Also, as state support was virtually non-existent, much of the money that comes from Northern donors is channelled through international non-governmental organisations (INGOs). While Southern DPOs appreciated the assistance, two studies that looked at this issue in some depth uncovered considerable tensions between them and INGOs. For example, the Disability KaR research into capacity building of disabled people's organisations in Mozambique (Ref. B4) found that in that country, 'DPOs are … angry at what they see as unequal power with their Northern NGO partners, who raise money from the North in the name of disability but do not discuss more openly and flexibly how those considerable resources should be spent.' These sentiments were repeated in other of the Disability KaR research reports.

Linked to financial insecurity were the problems encountered in developing individual capabilities and organisational capacity. This was brought out in many of the studies, but most comprehensively in the Disability KaR paper Are disabled People's voices from both South and North being heard in the development Process? (Ref. D3). At the Malawi roundtable participans commented on the problems of capacity but it was also felt that 'As disability activists move up the political ladder they develop a "lukewarm" attitude to disability issues and no longer represent disability issues to the governments they are part of. This results in a further decrease in the capacity of DPOs and people with disabilities to self-represent and lobby/advocate for their rights and disability issues in general.'

The question of the extent to which DPOs were representative of disabled people was brought out in the Disability KaR paper Disability in conflict and emergency situations: focus on tsunami-affected areas (Ref. D6). In Sri Lanka it was claimed that DPOs, dominated by urban-based middle-class men, had little knowledge about or contact with poor disabled people in rural areas. Of course, being able to draw in a sufficiently broad-based membership is a problem for many DPOs in both the North and South, but it is also a time-consuming, costly business for which resources are hard to attract.

Resource inequalities also figured centrally in the Disability KaR paper Promoting inclusion? Disabled people, legislation and public policy (Ref. D4). The point made by the researchers was that to be able to engage meaningfully in key national and international issues, DPOs needed access to various forms of expertise. However, 'Few DPOs can afford such expertise and, when it is available, it is almost invariably provided, pro bono, by disabled people and our supporters on a part-time basis.' A similar problem was observed in Uganda where the National Union of Disabled Persons of Uganda (NUDIPU) had to struggle in order to participate on equal terms in the consultations over the country's Poverty Reduction Strategy Paper (PRSP) (Ref. B2).

Meeting the challenges

Every DPO faces problems depending on a whole range of factors, many of which are country-specific. However, as demonstrated at the Disability KaR roundtables and in the research reports, money, or rather the lack of it, is the root of problems virtually everywhere. It is, therefore, not surprising that a fairly consistent recommendation is that states heed the Standard Rules and develop '… formal and appropriately resourced partnerships between governmental and DPO actors, especially at the local level' (Ref. D4).

The need to build DPO capacity was another point widely made. In Mozambique, for example, DPOs said that this was necessary to give them 'legs with which to walk, or on which to stand' (Ref. B4). This point was general but also made with respect to particular projects. For example the Disability KaR paper Data and statistics on disability in developing countries (Ref. D5) called for '…a grassroot strategy … for doing disability research in low-income countries. The core of this strategy is DPO control and involvement, a close link between research and application, and long-term capacity building among DPOs.'

The Association of People with Disability (APD), one of India's oldest DPOs, gives high quality vocational training in marketable areas such as horticulture

There were also demands for greater unity among DPOs to be achieved through better networking and communication and the development of crossimpairment organisations. A good example of this, given at the Disability KaR India roundtable, was of the Orissa State Disability Network that had been established to work at all administrative levels to lobby on disability issues. The lesson here is that only by working in concert will disabled people have the chance of realising social equality - as has been shown by the disability and other emancipatory movements throughout the world.

Conclusion

From a number of different angles the new international aid regime has put a great deal of emphasis on the role of civil society in helping to promote economic growth and reduce poverty. However, all too often it seems to be expected that marginalised groups, be they women, poor people or disabled people, will be able to self-organise spontaneously and take part on equal terms with other stakeholders. This is obviously an unrealistic expectation.

It is understandable that in under such conditions Southern DPOs are having to rely on foreign donors for financial support. But all too often rather than developing the sustainable capacity of the DPOs, it is the capacity of the INGOs that is being strengthened through this relationship. As reported in the Disability KaR study on disabled voices (Ref. D3), 'The Northern NGOs and INGOs tend to use the southern DPOs because at the end, they benefit more from these proposals.' At the same time, even with the best intentions on behalf of INGOs, new forms of dependency for disabled people and their organisations are being created. A number of the reports conclude that what is called for is for donors to consider how to find more direct, efficient, emancipatory methods of helping Southern DPOs to empower themselves.