Disability - A key development issue

The Knowledge and Research Programme on Disability and Healthcare Technology was launched in 2000. As the second phase begins - called Disability Knowledge and Research - this issue of the KaReport looks back at the first: its achievements, the lessons learned and what these mean for the future.

The UK Department for International Development (DFID) launched the Knowledge and Research (KaR) Programme on Disability and Healthcare Technology in September 2000. Jointly managed by Healthlink Worldwide and GIC Ltd, the first phase of the programme funded 17 projects in Africa and Asia up to March 2003. The aim of this phase was to improve healthcare technologies and infrastructure for poor people, minimise the detrimental effects of disability on their lives, and stimulate and share learning and knowledge.

The second phase beginning now has a greater focus on disability and aims to address, through policy development, the connections between disability, poverty and development. Phase one has many lessons, both project-related and programmatic, to inform the second phase and the broader debate on disability and development.

Technology in action

Many of the initiatives in KaR phase one focused on practical technological solutions to issues of disability and healthcare provision. Three examples from the first round of projects can be used to illustrate the successful application of technology. Detailed summaries of each of the projects and lessons learned can be found in Competition Projects [1].

The KaR programme funded research in Ghana and India undertaken by UK-based Adaptive Eyecare Ltd. This research showed that poor vision is a major block to learning, and a significant reason why pupils drop out of school and fail to become literate. The remedy proved to be relatively simple: spectacles with adaptive lenses that wearers can quickly and easily adjust themselves.

Without the need for highly trained opticians, this is a straightforward, cost-effective solution that gives people direct control over their visual impairment.

A residential home for disabled children in Chitradurga, India, who have been fitted with callipers using prefabricated components. Krishna, to the right, cannot be fitted until his severely contracted legs are straightened and strengthened.

In India, a KaR-funded collaboration between a disability organisation, Mobility India, the UK-based Jaipur Limb Campaign, and a large plastics manufacturer, Abhyianta Plastics, led to the development of prefabricated, mass-produced knee-ankle-foot orthoses (KAFOs), to address the many problems associated with traditional metal callipers.

One user, Kuhu Das of the Association for Women with Disabilities, West Bengal, reports:

"To me, a plastic calliper is the feeling of freedom from my impairment [It] is easy to wear, comfortable, gives more mobility and is good looking I am no longer ashamed to wear it!"

As a third example, a KaR project in Africa funded UK-based organisation Motivation to develop a Wheelchair Technologists Training Course the first in the world. The course aimed at building local capacity to design, produce and maintain wheelchairs, in order to give disabled people access to low-cost, appropriate wheelchairs.

Lucia Shayo, 12, of Kibosho, Tanzania, was given a chair by Motivation two years ago. She says:

"It's made a big difference to me Now I can easily visit my friends as well as attend school. Graduates of the training course also sing its praises."

Zimbabwean Emmanuel Majole, who is himself disabled, says:

"With the new skill I hope to manufacture low-cost wheelchairs which will benefit some of the poorest members of our communities."

Communicating knowledge

Another important part of KaR phase one was the documentation and communication of disability-related information. Healthlink Worldwide and its partners set up a physical resource centre and used information and knowledge management tools such as web-based databases with the aim of increasing people's access to information on international good practice on disability.

Teaching-aids At Low Cost (TALC) produced and distributed free CD-ROMs containing health and training information for health workers in the South. Studies have shown that while many health workers in the South do not have Internet access, they can use CD-ROMs. This technology is also relatively cheap to produce and distribute.

Lessons learned KaR Programme

Director Roger Drew identifies three major lessons from phase one. First, the programme has supported a number of innovative and creative projects to develop technologies but it has been difficult to upgrade them to a commercially viable scale. This is because of a lack of market and lack of support from donors, according to Drew; sometimes external support is needed to create a market.

A report [2] by GIC Ltd and Beaufort International published in June 2003 explored this problem and made a number of recommendations to DFID. The report cited the following causes:

• The financial risks are considered too high. The reasons for this are threefold: ventures are at an early stage of development, carrying a higher risk of failure; their markets are the poor and/ or disabled in developing countries; many ventures lack a credible business plan.
• Business-like activities that are part of project proposal development seem remote from end-beneficiaries.
• Venture philanthropy - grant-based funding targeting core costs rather than project costs - appears to be an appropriate source of funding but is non-existent in the UK (whose government is funding the programme).

Second, there is a need to share the lessons learned. "So much is ‘known’ and documented, but not used in practice," Drew says. While much has been achieved in this area in the form of newsletter production, construction of a website, regional round-tables and so on more could and should be done.

The third lesson Drew cites is:"if we are tackling poverty we have to tackle disability; we can t continue to neglect it." This is perhaps the most important message to emerge from the first phase, and one that figures strongly in a concept paper [3] produced by a team from the Overseas Development Group (ODG), University of East Anglia. This paper, which has informed the second phase of the KaR programme, discusses the links between disability, poverty and technology.

The ODG paper

One of the key points to emerge from the paper is that the main emphasis of the second phase of the programme has moved away from technology and onto disability (as reflected in the change of name). The paper recognises that technology can be "immensely liberating and empowering for disabled people if developed within a framework which prioritises their real needs as well as their genuine participation at all levels." However, it needs to be "3A" - appropriate, accessible and amenable - to the needs of disabled people.

The paper places firm emphasis on the connections between poverty and disability, warning: "Poverty, disability and impairment are clearly linked in a deadly embrace." It describes poverty as a root cause of many forms of impairment, and a major factor in transforming impairment into disability. In an article [4] based on the paper, published in January 2004, Seddon, Albert and McBride say: "Disability exacerbates poverty, while having impairment makes being poor more gruelling and inexorable." Poverty can undermine the best-planned development initiatives and must be seen as central to action on disability.

The ODG paper advocates adopting the social model of disability, which "offers a powerful framework for understanding the complex issues of disability, poverty and technology," revealing disability as a cross-cutting social issue [3]. Thus the new phase of KaR will be driven by the idea that technology, like disability and poverty, must be seen as a social process. Focusing on the material aspects of technological "fixes" can place too much emphasis on the medical model of disability: the idea that impairment is what is "wrong" with someone, and technology can put it "right" and that impairment and disability are one and the same.

Provided that appropriate technological solutions empower the users, however, technology is of critical importance to the social-model approach, as it can help break down barriers to social integration. As the ODG paper underlines, the need for a participatory approach in which responses are led by disabled people and their organisations is central to the social-model approach:

"Ideally, the more disabled people are involved in debates [ ] in their local or national context, the more any debate [ ] can be grounded in the social and political realities." [3]

Were the phase one projects sufficiently participatory? KaR adviser and one of the paper's authors, David Seddon, admits:

"My reading of the [first phase] was that it tended to lean towards institutions that looked safe, and institutions with strong northern components. That was partly pragmatic and partly because I don t think the participatory involvement of disabled people was considered. All this militates against grassroots organisations getting a look-in, and that is to some extent the case with the six new projects in phase two. I hope we can move towards a more participatory approach."

A demand-led support system is required, say the report authors, in which disabled people and their organisations can work with specialists and other facilitators.

One major problem is that disability remains institutionally and conceptually on the margins of development. "Disability is strangely invisible," says Seddon, "for reasons which have to do with disabled people being hidden and stigmatised." In many developing countries it can be difficult for disabled people to even register as such. Being in a weak and marginalised position, they do not tend to make demands. In the developed world disability has only been recognised as a major development issue in the last few years.

For instance, says Seddon, the UK Government put disability on the agenda of its Social Exclusion Unit only recently. One of the new projects in the second KaR phase is specifically designed to help DFID develop the focus on disability and development that the report's authors say is needed.

The Disability Knowledge and Research Programme projects are a further step in this direction, and the programme, it is hoped, will prove itself as an overall learning process.

References

1. Learning in practice: Lessons from the Disability and Healthcare Technology Knowledge and Research Programme Healthlink Worldwide, 2003

2. Financing large-scale manufacturing of appropriate healthcare technology products for the poor and the disabled in developing countries: A report for the KaR Programme on Disability and Healthcare Technology Beaufort International and GIC Ltd, June 2003

3. Albert, W., McBride, R. and Seddon, D. with Cole, K., Cozens, R., Daines, V., Lang, R. and Rao, I. Perspectives on disability, poverty and technology A report to Healthlink Worldwide and GIC Ltd. Overseas Development Group, University of East Anglia, September 2002 (PDF 61 pages, 418 KB)

4. Seddon, D. Albert, B., McBride, R. Perspectives on disability, poverty and technology, Asia Pacific Disability Rehabilitation Journal Vol. 15 No. 1, 2004, pp98-107

Disability matters in development because...

• There are upwards of 600 million disabled people in the developing world.
• Almost 3.5 billion people are directly affected by having a disabled family member.
• Disabled people are routinely stigmatised and excluded from access to education, transport, cultural and civic activities, healthcare and employment and, because of this, are exposed to pernicious discrimination.
• Disabled people are made dependent and find it difficult or impossible to realise their own potential and contribute to the economic and social life of their society.
• It is difficult for disabled people to make a contribution, disability is associated with the most grinding poverty.
• At the same time, poverty remains both a cause and a consequence of disability.
• Reducing poverty is the headline Millennium Development Goal but without tackling disability as a mainstream issue the target of halving poverty by 2015 will never be achieved.
• Disability is above all a critical human rights issue and respecting these rights is a litmus test of any society's commitment to justice, equality and inclusion.
• Genuine social and economic progress can only be achieved by bringing disability into the heart of the development process.
• Leading developing agencies such as the World Bank and USAID are dedicated to putting disability on their development agenda.