Disability World
A bimonthly web-zine of international disability news and views • Issue no. 20 September-October 2003


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European Disability Forum Issues Comprehensive Report on Development Cooperation

"States should recognise the rights of organisations of persons with disabilities to represent persons with disabilities at national, regional and local levels. States should also recognise the advisory role of organisations of persons with disabilities in decision-making on disability matters."
Rule 18 of the United Nations Standard Rules on the Equalisation of Opportunities for Persons with Disabilities
Contents
1. Introduction and Overview of Key Issues
2. Background to Disability and Development
2.1 Development cooperation and the North-South divide
2.2. Defining Disability
2.3. Individual and Social Models of Disability
2.4. The Scale and Nature of Disability in Economically Poorer Countries.
2.5. Poverty and Disability
3. Why mainstream disability and how can it be done?
3.1 Human Rights
3.2 Economics
3.3 Responding to common arguments against including disability
3.4 Benefits and Impact of Mainstreaming
3.5 The importance of a Twin-track approach
3.6 How to Mainstream Disability in Development Co-operation
4. Recommendations for the European Union to include the disability dimension in development cooperation.
4.1 What makes a good policy?
4.2. How the EU can develop good policy
4.3 Practical Strategies
References
Annex A: Why Mainstream? Examples of arguments from Key International Agencies and Governments
Annex B: Examples of Policy on Mainstreaming Disability
Annex C: How to Mainstream - Examples of Guidelines
Annex D: Good Practice in Disability and Development Cooperation - Some Examples
Annex E: Monitoring and Evaluating Impact - Examples of Reports

Glossary and Abbreviations
North
this term refers to the group of countries that are also often referred to as 'developed' or 'industrialised'. The terms 'developed and developing' have not been used because they imply a judgement based solely on economic criteria and ignore the huge degree of cultural development to be found in poorer countries. The term 'north' is a generalisation because the concept also includes Australia and New Zealand, to be found in the Southern hemisphere, so it should not be taken literally, but should be understood to refer to those countries who have substantial international power and resources. Other terms used are the 'one third' and 'two third's world, referring to the fact that the richer countries only have one third of the population, yet control over two thirds of the resources.
South
Likewise, this term refers to the larger number of countries in the world that are economically poorer and less powerful. It needs to be acknowledged though, that this vast range of countries are extremely diverse, and many of them have pockets of power and wealth, or are countries 'in transition' towards the market economy and democracy. The term South is best understood as referring to poor and less powerful populations, wherever they are (and many are also within the richer countries).
Impairment and Disability
Strictly speaking, impairment refers to an actual physical loss or reduction of functioning in an individual, e.g. loss of vision, hearing, movement, speech, or ability to learn. Disability on the other hand, refers to the way in which an individual with an impairment is dis-abled by the society, through barriers to access, discrimination, exclusion etc. So it is accurate to speak of persons with impairments, or disabled people (not people with disabilities). But the term 'disability' is often used interchangeably with the less common term 'impairment', particularly outside the UK. So in this paper, various quotes use the term disability when referring to impairment. The important thing is to understand the underlying concepts, and not to be worried by the language.
CBR
Community Based Rehabilitation
DPO
Disabled Persons Organisation
DfID
Department for International Development, UK
EU
European Union
INGO
International non-government organisation
MEP
Member of the European Parliament
NORAD
Norwegian Agency for Development Cooperation
NGO
non-governmental organization
PRSP
Poverty Alleviation Strategy Papers (Required by the World Bank of donor recipient countries)
WHO
World Health Organisation
1 Introduction and Overview of Key Issues
Disabled people exist in every community throughout the world. Anyone can become disabled at any time, and as populations age, disability will be the experience of an increasing percentage of every society. Yet universally, disabled children, women and men lack access to basic human rights, and are marginalized, excluded and discriminated against.

Most disabled people (70% and 85% of disabled children) live in the economically poorer countries of the South where lack of access to human rights is first and foremost about the right to life, to food, water and shelter. Because poverty is both a cause and consequence of disability, some estimates state that as many as 1 in 5 poor people are disabled [1]. This would mean that practically every family in a poor community would be directly affected by disability [2]. Yet within development co-operation policy and practice aiming at poverty reduction, disabled people usually remain invisible and excluded.

Even when there is an awareness of the need to include disabled people in development co-operation activities, there is still a lot of misunderstanding and ignorance about what this means in practice. Many donors assume that it is a highly specialist area requiring lots of additional specialist resources. Yet the inclusion of disabled persons could progress a long way if projects just consulted with disabled people and paid attention to not putting up the barriers that exclude disabled people.

There are huge costs to society in not considering and including disabled persons that can only be estimated. Poverty reduction, universal primary education, employment and economic targets will never be met unless disabled persons are included. Reconstruction efforts in post-conflict situations need to realise the numbers of disabled children and adults increase as a result of conflict, and include them in the re-building of their society.

The topic of disability and development cooperation is a broad, complex and continuously evolving issue. Any attempt to provide an overview runs the risk of making sweeping generalisations that will not be practically helpful, and may even reinforce stereotypical assumptions about 'development', 'the South' and 'the situation of disabled people'.

On the other hand, over the last two decades in particular, there has been a vast amount of experience gained and knowledge shared between communities, local and international NGOs, disability organizations, governments and international agencies who in different ways and with a wide range of strategies, have tried to address the issue of disability in development cooperation. Knowledge has been gained, and lessons have been learnt, that can help make development cooperation more responsive to the situation of disabled persons.

Some of the relevant key issues are: the changing face of development cooperation, definitions, scale and nature of disability in different cultures and contexts, and the context of poverty and disability.

2. Background to Disability and Development
2.1 Development cooperation and the North-South divide
There has been a major shift in development rhetoric over the last few years, towards a strong focus on poverty alleviation and human rights (exemplified by the widely supported Millennium Development Goals, focusing on the alleviation of poverty by the year 2015). However, NGOs point out that in practice, the poorest of the poor (including disabled people) are continuing to be excluded. Another key change is the vast increase conflict and refugee situations, again directly affecting disabled people. 'South' and 'North' are terms that encompass a very diverse range of countries, yet the gross power imbalance between the rich one-third of the world, and the poor two-thirds of the world remains true. [3]

2.2. Defining Disability
Defining disability is problematic for many reasons that have been well documented elsewhere. It is important not to impose definitions developed in the 'North' on countries in the South. The UN Standard Rules provides a workable definition, yet the term 'handicap' is now largely considered to be stigmatising and is not really used in the English speaking world.

UN Standard Rules Definitions of Disability [4]:
The term "disability" summarizes a great number of different functional limitations occurring in any population in any country of the world. People may be disabled by physical, intellectual or sensory impairment, medical conditions or mental illness. Such impairments, conditions of illnesses may be permanent or transitory in nature.

The term "handicap" means the loss of limitation of opportunities to take part in the life of the community on an equal level with others. It describes the encounter between the person with a disability and the environment. The purpose of this term is to emphasize the focus on the shortcomings in the environment and in many organized activities in society, for example, information, communication and education, which prevent persons with disabilities from participating on equal terms [5]

2.3. Individual and Social Models of Disability
The 'Individual Model' of disability incorporates both the charity and the medical models. It perceives the disabled person as the problem, and does nothing to change society. This model is still prevalent in development cooperation and is supported by donors who want a quick and visible fix, such as building an institution or a special school whilst leaving society and the education system unchanged.

In the Social Model, disability is perceived as a relationship between the individual and society. It is consistent with the human rights approach. In development cooperation, it provides a sound basis for analysis and planning. Key questions are; what are the barriers that disabled people face, and keep them excluded from society? How can these barriers be overcome? Surveys should focus more on these barriers than on the types of impairment that people have. The Social Model does not deny or exclude the need for appropriate rehabilitation and medical treatment, but it implies that the system should adapt to the person, not the person to the system.

2.4. The Scale and Nature of Disability in Economically Poorer Countries.
The Challenges of Data Collection and Reliability are problematical in relation to disability generally, but more so in the South, because
  • Definitions and perceptions of disability vary greatly. There are different views on who should be included in the term disabled, particularly in relation to people with chronic health conditions.
  • Surveys are not standardised and reflect a medical model.
  • Visible impairments are easily surveyed, but ignorance about how to identify other impairments (deafness, intellectual impairment, epilepsy) means that a child could remain unidentified for years. This can result in worsening impairment and exclusion.
High Incidence, Low Prevalence
Incidence refers to the numbers of disabled people born or made disabled within a given period, whereas prevalence refers to disabled people who survive, and the percentage of a given population who are disabled. In poorer countries in the South and conflict situations, because more disabled people die (both babies and adults who become disabled), there is usually a big gap between incidence (which can be very high) and prevalence (which can be low).

Cycle of Invisibility
a circular flow chart illustrating the cycle of invisibility

[Long description of image: the cycle of invisibility is a four part loop: 'invisible disabled people, hidden in back rooms' to 'not a problem in this community, the community doesn't prioritize it' to 'no services, no inclusion' to 'discrimination and lack of awareness continues' and over again]

What the data DOES tell us
Despite the challenges, various UN and other agencies have collected a wide range of data over the years. Although precise figures are not possible, the rough estimates have been backed by experience and are useful for planning. The following is a summary of key points from this data [6].
  • The South: 70% of disabled people live in the South,
  • Disabled Children: 87% of the world's disabled children live in the South
  • Impact on Family: in a country with an average family size of 6 people, even if only 5% of the population is disabled, then over 25% of that community will be directly affected by disability. Given the role of extended families, then it could mean that half the population will have a disabled person within their extended family.
  • According to population growth forecasts, numbers of disabled persons in the South will increase by over 120% in the next 30 years, whilst numbers of disabled persons in the North will increase by around 40%.
  • Disability and ageing: the greatest increase in numbers of disabled persons in both South and North will be in the older age groups, particularly 65+, counteracted in many places by the impact of AIDs
  • 10 per cent? General estimates provide that 10% of the world's population are disabled persons including about 100 million people thought to be disabled as a result of malnutrition. Further research from different sources provide more specific data although it is subject to how disability is defined [7].
  • Severity of Impairments: In poorer countries, people with mild impairments may be severely disabled because of lack of opportunity for appropriate equipment or rehabilitation that can easily be rectified in richer countries (e.g. providing spectacles, cleft palate operations). So mild impairments are more visible and common. However, people with severe impairments who would receive extensive medical treatment in richer countries, are more likely to not survive.
  • Conditions such as HIV/AIDs, mental health problems, tuberculosis, chronic malaria, female genital mutilation, psychological trauma in conflict and refugee situations can all give rise to permanent impairments that result in exclusion and discrimination. If these people are included, then the prevalence rates will be much higher.
Preventing impairment is not the same as including the disability dimension in development.

Preventing impairments through vaccinations, eliminating diseases that cause impairment and improving birth practices does nothing to improve the human rights of disabled persons already living. It is much more about creating the optimum level of health and safety in a society, rather than about including a disability dimension into development. As the term 'inclusion' becomes more popular, there is a tendency for agencies to claim that they are including disabled people in relation to any project that mentions disability. For example, the World Bank list of projects on 'Including Disabled People in development' lists many projects that are basically about preventing impairment, and is not about inclusive development.

2.5. Poverty and Disability
According to a World Bank study on Poverty and Disability, 16.7% of the poor are disabled as compared with a general average in the South of 4.8%. [8]

It is increasingly acknowledged that 'Disability is both a cause and a consequence of poverty' [9] yet the relationship is complex and differs according to each country and context. In addition to different definitions of disability, there are different understandings and opinions as to what constitutes poverty. 'Poverty is not only about rates of income but also about social exclusion and powerlessness' [10]. There is a large amount of literature that analyses and defines poverty produced by development agencies. One comprehensive document that also specifically includes a disability dimension is produced by the UK DfID: Poverty: Bridging the Gap (2001). Although disabled people are disproportionately represented amongst the poor in all countries and contexts, in relation to development cooperation, the focus will be on those living in absolute poverty. In concrete terms, this means lacking access to basic survival needs; food, clean water, clothing, shelter etc. Poverty and disability can form a vicious circle that is difficult to break - poverty increasing disability, and disability in turn leading to increased poverty.

3. Why mainstream disability and how can it be done?
'A Society which is good for disabled people is a better society for all" [11]
3.1 Human Rights
Rights are Universal: Disability has increasingly been given specific mention in human rights instruments, and the universal human right to non-discrimination has also increasingly been understood to include disability. Moreover, the UN General Assembly has produced a Recommendation (November 2001) to consider proposals for a UN Convention on the rights of disabled people which is currently being prepared by a UN adhoc Committee in cooperation with the international disability NGOs including EDF.

In relation to developing countries, the 'second generation' human rights such as right to life, food etc, are a particular priority for disabled persons in poor communities, but need to be seen as closely linked to civil and political rights. From a human rights perspective, development programmes can no longer make excuses for not addressing disability. To intentionally exclude disability would be a violation of human rights expressed in several legal instruments that States have ratified.

Rights are Indivisible: With regard to mainstreaming, the important issue is that human rights are indivisible, and although a rehabilitation centre might help a disabled person realise their right to rehabilitation, if they are still excluded from schools and jobs, their human rights are being violated. Just supporting disability-specific projects within development cooperation does not fully respect human rights, because discrimination and exclusion is still being perpetuated within mainstream systems. There are fundamental principles which provide an extremely strong basis for the mainstreaming approach. These include;
  • Equal worth and dignity of each human being
  • Non-discrimination: discrimination is widely recognised as a major violation of human rights. This includes discrimination within mainstream services and structures within society
  • Right of access - to environments, services, structures
  • Right to live in one's community and with one's family
  • Right to social integration and full participation in society
  • Right to participate in political life, and to vote
  • Right to freedom of association
3.2 Economics
The cost of NOT including disabled persons: If disabled persons were not included in development cooperation, this would mean costs related to
  • Loss of income the disabled person, for carers and other family members due to stigma
  • Loss of education for the disabled person, for siblings who are carers and for other family members due to stigma
  • Social exclusion and stigma leading to loss of land rights, no access to credit schemes
  • Long term loss of productive potential of disabled person due to lack of appropriate rehabilitation and opportunities. It has been calculated that one disabled child who does not receive appropriate rehabilitation and inclusion may 'place a burden on the community up to 6 times that caused by diarrhoeal disease' [12]. This illustrates the point that although diarrhoea is much more common than disability, disability has life-long implications.
  • Additional costs to the family, community and State in caring for the disabled person who could have become independent,
  • Additional medical costs that could have been avoided in basic exercises or rehabilitation that prevents impairments becoming worse had been available. E.g. corrective surgery for contractures due to cerebral palsy or post-polio paralysis which could have been avoided with exercises.
The costs to the community as a whole: A service or system that excludes disabled people often excludes other vulnerable groups as well such as children, mothers with young children and elderly people. The system of extended families means that a large percentage of the community is affected, not just the individual disabled persons. To not address disability in poverty alleviation programmes is like pouring water into a bucket with a hole in it. "the elimination of poverty cannot be achieved without strategies for integrating the rights of minority groups" [13]

3.3 Responding to common arguments against including disability
Some common arguments [14]:
  • Disability is not a priority; it is a luxury in poor communities
  • Disability is too specialist - it is unrealistic to expect ordinary people to be able to develop sufficient knowledge and skills to deal with disability
  • Addressing disability would be too costly; expensive aids and equipment, medical care, and the huge cost of adapting buildings, making materials accessible etc
  • Funding for disabled persons is a waste of resources better spent on prevention; disabled persons cannot make much contribution to society, so better to put all resources into preventing impairments in the first place
Responding to these arguments:
  • Disability has to be a priority: Communities who are consulted about their priorities are unlikely to spontaneously prioritise disability for the following reasons; a) the cycle of invisibility (discussed earlier), b) a fatalistic assumption that nothing can be done about disability and so there is no point mentioning it, c) consultation is usually made with non-disabled representatives who themselves are subject to negative attitudes. However, in reality disability HAS to be a priority if poverty alleviation and whole-community development is to happen, because of the costs and scale outlined above.
  • Disability is not a specialist issue: it is a human rights issue. Disabled people's priorities are for food, shelter, family life, clothing, income and full participation just the same as anyone else. The so-called 'specialist' aspects refer to the needs that SOME disabled persons have for aids, equipment and particular rehabilitation exercises. It has clearly demonstrated that ordinary people and local communities can develop the appropriate knowledge and skills to meet the rehabilitation needs of at least 80% of disabled persons, using existing local resources [15]. There is a wealth of appropriate technology techniques such as APT (appropriate paper technology to make seating and equipment for disabled children) that can be utilised very effectively. A key issue here is enabling disabled people themselves and their families to create their own appropriate solutions.
  • Addressing disability saves costs long-term: the long-term costs of not including disability have been highlighted above. For many disabled persons, particularly in poorer countries where the majority of disabled persons have a mild impairment, there are no additional direct costs. Often a change in attitude and policy can create inclusion. Making services, environments and transport accessible from inception is less costly than adapting these services etc once they have been established. Some disabled persons do need some extra support in order to be able to fully participate, but again, the long-term benefits of enabling this person to become productive offset these costs. In implementing mainstreaming, there will of course be initial costs in training, awareness-raising etc. But again, these costs will be offset by the long-term benefits.
  • The importance of mainstreaming: in poor communities, sometimes donors have showered resources onto a small minority of disabled persons - operations abroad, individual sponsorship, highly resourced special schools for an elite few. This has reinforced the belief that addressing disability is very expensive and specialist and leaves the majority of disabled persons not even accessing basic rights. Ideally, a blind child may need to learn Braille equipment and training, but to begin with, when the community is poor and the school does not even have a decent building or any books, then the priority is that the community makes even this education inclusive to all, and the blind child can be with their peers, and learn alongside them as best they can. When resources increase for the whole community, then more specialist resources can be obtained for disabled persons.
  • Addressing disability is important in addition to prevention: Donors often feel that it is 'more important' to put resources into prevention than to focus on people who are already disabled. The mistaken belief is that disability could somehow be eradicated through focusing on prevention, but in fact it is intrinsic to being human, and we are all vulnerable to becoming disabled. If removing disabling barriers and supporting disabled people are not resourced, then the abuse of human rights and waste of human potential will continue.
3.4 Benefits and Impact of Mainstreaming
Different approaches to addressing disability.

In development cooperation, disability may be addressed via a number of strategies;
  1. Disability-specific projects: some of which are based on a medical model and promote segregation and target elite groups, and others which promote inclusion and empowerment of disabled persons. Examples of appropriate disability-specific projects are outlined below.
  2. Components added on to mainstream: the example of special units attached to mainstream schools illustrates the dangers of the 'component' model. Great care must be taken to assess whether the component will really lead to inclusion.
  3. Mainstreaming: this term is often interchanged with terms such as 'integration' and 'inclusion'. Human rights instruments and the social model analysis can be used to develop appropriate indicators of quality mainstreaming. The key issue is that the system/environment/service/legislation should respond to, acknowledge and adapt to diversity, including disability, not vice versa. Expecting disabled persons to adapt to the system, or physical presence alone is not mainstreaming, but is assimilation.
Impact of Scale: The scale of disability has been discussed earlier. In poor communities the majority of families could be affected by disability. Whatever the statistics, the key issue is that disability does exist and will continue to exist within all communities throughout the world. A key benefit of mainstreaming is that it can have an impact on ALL disabled people within the community. Specific disability projects will NEVER be able to reach all disabled persons. The cost of removing disabling barriers for ALL disabled persons is also much more sustainable than providing expensive facilities for an elite few.

Quality: For mainstreaming to have an impact in terms of quality, the mainstreaming has to be real, and not just assimilation, as discussed above. Real mainstreaming takes a social model and rights-based approach and will ultimately ensure the realisation of full human rights for disabled persons, and inclusive societies for all. A key impact of making programmes and society inclusive, is that it creates a higher quality society for everyone, not just disabled people; as society that embraces diversity, promotes community solidarity, enables people's potential and protects those who are vulnerable. Ad hoc disability-specific approaches tend to leave mainstream society as it is; exclusionary, oppressive and intolerant.

See Annex A for examples of arguments/ statements from key agencies and governments

3.5 The importance of a Twin-track approach
Inclusion is both a goal and a process. The benefits of mainstreaming have been highlighted, together with the limitations of only using a disability-specific approach. However, in order for mainstreaming to be REAL mainstreaming, and not just assimilation, a twin-track approach that also includes some appropriate disability-specific approaches, is needed. 'The twin-track approach is not just an option - it is a necessity' [16].

Appropriate disability-specific strategies are needed to make mainstreaming effective. A disabled child who cannot toilet themselves and is lying rigid with contractures in a back room cannot benefit from education even if the school is fully accessible, has well-trained teachers and a child-centred, flexible curriculum. A disabled adult who is illiterate, has low self-esteem, hardly any life-experience and no access to essential assistive devices (callipers, crutches) cannot take part in discussions that the World Bank has convened to gain civil society input into the national Poverty Alleviation Strategy Papers, even if they have been invited, which is unlikely. If the PRSP documents have been produced in Braille, but the blind members of the community have never been introduced to Braille, they cannot participate. So basically, mainstreaming cannot be effective unless at the same time, measures are taken to
  • Provide basic rehabilitation, prevention of impairments worsening, necessary assistive devices, aids and equipment
  • Capacity build grass-roots organizations of disabled persons to enable them to develop life-skills, self esteem, and an understanding of their rights
3.6 How to Mainstream Disability in Development Co-operation
"It's a matter of attitudes, political will and practical know-how" [17]
The Twin-track approach is essential in order to make mainstreaming effective. This means that as well as removing barriers within the mainstream, there should also be a specific focus on disability. So at the level of Policy, disability should be mainstreamed into general development policy, into gender, poverty-alleviation, health and education policies. There should also be specific disability policy (rights-based and promoting inclusion) that goes into more detail. In relation to Strategy, barriers (e.g. access) should be identified and removed in the mainstream, and in addition, disabled people should be empowered to participate through strengthening DPOs, and creating access to appropriate rehabilitation and aids and equipment. Structurally, 'Disability needs to be approached vertically and horizontally within aid agencies.' [18] This means that aid agencies need to raise awareness amongst ALL their staff, but also appoint people with specific disability responsibility, to ensure the issue does not get lost. In relation to Budgets, mainstreaming needs to be supported by appropriate funding, this could be by allocating a certain percentage of every mainstream budget to disability (The Indian government allocates 3%). In addition, a specific budget is required for activities such as training and awareness raising across the board, providing they exist in order to promote mainstreaming, and not to fund inappropriate 'vertical' projects that promote segregation.

The donor organization - structure and ethos; The donor agency needs put into practice what it is recommending in its development cooperation. This includes:
  1. consulting with and employing disabled persons at all levels, including top management.
  2. Creating a disability-friendly accessible environment and accessible communications on all issues, not just disability issues.
  3. Establishing disability training and awareness-raising for existing and new staff.
  4. Appointing persons with specific responsibility for focusing on disability inclusion who have authority to influence decisions and budgets (not just advisors)
  5. Providing specific training to staff who are responsible for assessing funding applications, and developing funding proposal assessment criteria.
  6. All research, data collection, monitoring and evaluation in relation to development programmes should disaggregate the data not just according to gender, but also in relation to disability and age.
Examples of practical guidelines and good practice in relation to mainstreaming are provided in Annexes C and D

4 Recommendations for the European Union to include the disability dimension in development cooperation.
4.1 What makes a good policy?
Policy on mainstreaming disability is very much an emerging area and continues to evolve. It needs to take into account both the rapidly changing understandings of development cooperation, together with deeper understandings of disability as a human rights issue within the context of poor communities in hugely different cultures and contexts. So 'good practice' is a relative term - in the final analysis, a policy is only as good as the impact of its implementation. To what extent does it really offer the basis for increased realisation of the rights of disabled persons, and for their full participation in the development of their communities?

Policy needs to have teeth: Another key consideration is the difference between formal policy that is legally binding, and the range of 'discussion', 'concept', 'strategy', 'consultation' and 'issues' papers that are produced often, but not always, in addition to policy. These can be very influential, providing that lobbyists use them effectively. A strength is that they can often go more deeply into complex issues, and can help ensure that the spirit rather than the letter of the law applies. Although there are real distinctions to be made between the status and aim of each of these types of document, in the following overview, it is the content that is highlighted and assessed.

Key ingredients of a good policy statement
  1. Mainstreamed Policy: a policy statement on disability and development cooperation should be an integral part of the general mainstream development policy at EU level and in the development cooperation policies of the Member States themselves. It must be fully integrated into its goals and objectives, even if there is a specific disability policy statement.
  2. 'Nothing about us without us' Consultation with organizations of disabled persons, particularly those from partner countries in the South and with particular attention to involvement of poor disabled people, disabled women and children, groups representing those who are particularly vulnerable to exclusion; deaf persons, intellectually impaired persons, people with mental health problems, parent groups etc.
  3. Society for All: policy needs to state clearly the goal of an inclusive society for all that tolerates and celebrates diversity and promotes equity and social justice, a society within which disabled persons have a key role to play.
  4. Human rights approach to disability: reference to the UN Standard Rules, and to binding legal human rights instruments that apply to all human beings. In addition, a need to reflect the discussions underway in the preparation for a UN Convention on the rights of persons with Disabilities. Policy should reflect an understanding of the indivisibility of human rights, and reflect the whole continuum or rights from survival and development to civil and political rights.
  5. Social model analysis: Policy should reflect an understanding of disability as relationship between a person and the society, which discriminates, excludes and marginalizes them. It should focus on the barriers to participation and inclusion that disabled persons face, and state clearly the need for these to be prevented and removed
  6. Poverty and Disability; Policy should clearly state the inter-relationship between poverty and disability, and the importance of including a disability dimension in poverty alleviation strategies.
  7. Twin-track approach: the policy should stress the need for both disability-specific programmes (e.g. capacity building for disabled persons organizations) together with mainstreaming into all key development sectors. There are also stages between these two approaches, for example where a disability component is added on to a mainstream programme. However, some of these can be tokenistic and can even promote exclusion rather than inclusion - caution is needed.
  8. Appropriate practical strategies: the policy should refer to examples of good strategies that have worked in the local contexts, and not 'export' strategies from the North. These include community-based approaches and inclusive education that is broader than formal schooling.
  9. Particularly Vulnerable Situations and groups: Policy should make specific mention of disabled persons in conflict, emergency and refugee situations, and those in situations where institutionalisation is promoted. These situations are increasingly common rather than exceptional. It should also emphasise that disabled persons are not a homogenous group, and some groups are particularly vulnerable to marginalisation; people with profound/multiple impairments, deaf persons, people with mental health problems, and those with multiple discrimination e.g. disabled children, women, people from ethnic minorities.
  10. Accessibility: Policy should emphasise accessibility in terms of information, communication, (e.g. sign language, Braille), environment and mainstream services.
  11. Responsibility and Resources: Persons within key sectors need to be allocated responsibility for mainstreaming disability. Budgets need to take specific account of mainstreaming disability; 'trickle-down' should NOT be assumed.
All these main ingredients are relevant to both EU level policy formulation as well as that of the Member States themselves.

See Annex B for examples of Policy on Disability and Development cooperation

4.2. How the EU can develop good policy
  1. Use Examples of Good Practice from EU Member and Recipient Countries (see Annexes B, D)
  2. Make specific mention of disabled women, children and men in any reference to discriminated against, marginalized, minority, vulnerable or excluded groups, recognising that without specific mention, disabled people subject to invisibility and will be ignored.
  3. Continue to integrate disability issues into all relevant resolutions on development cooperation policy, particularly in the Social sector, (e.g the Resolution on Public Health [19])
  4. Issue a Communication (policy memorandum) on Disability and Older people in Development Cooperation, as called for by the Resolution on disability and older people ACP-EU 3313/01.
  5. Work towards adopting a Council Regulation on mainstreaming the disability dimension in development cooperation, as has been done in relation to gender issues (Council Regulation number 2836/98). This Regulation could focus on the issue of discrimination as a whole, but with very specific reference to disability amongst other issues such as older people and children.
  6. Other issues of diversity and discrimination such as older people, the children's agenda in development, gender issues, linguistic and ethnic minorities etc have much in common with challenges of mainstreaming disability. Rather than creating a large list of issues that are all integrated separately, maximum use should be made of addressing the commonality of discrimination/diversity within development cooperation. Issues should be linked wherever possible but also making sure that issues unique to disability are not lost.
  7. Integrate the Recommendations in the UN Standard Rules into all development cooperation guidelines
  8. Actively promote the position presented by the European Commission on a UN Convention on the Rights of People with Disabilities
  9. Make use of other key Human Rights Instruments particularly those promoting universal rights and non-discrimination, the UN Convention on the Rights of the Child, the Salamanca Statement and Framework for Action, the Beijing Declaration, the Copenhagen Declaration on Social Development, and the Convention to Ban Landmines.
4.3 Practical Strategies

Consultation with Disabled Persons:
  • Ensure consultation with disabled persons and their families in relation to ALL development cooperation policy and programme development, in recognition of the fact that all development policy and programme development will concern disabled people who are part of all communities, and in line with paragraph D of the Resolution.
  • The EU should seek to recruit disabled people at all levels in the EU. In departments relevant to development cooperation, disabled persons from the South or with experience in development cooperation should be prioritised.
  • Strategies to promote civil society participation including disabled persons, need to be accessible (in terms of communication and environment) to disabled persons, and need to be take into account the time and support needed in order for disabled persons to realistically participate.
Awareness-Raising:
  • Use disability and development specialists (either as consultants or appointed as EU staff) to carry out disability-awareness training throughout all levels and all sectors in the EU. The EU needs to develop 'in-house expertise' on disability and development cooperation, as mainstreaming is not a one-off event, but a process requiring on-going tailor made responses to each opportunity for mainstreaming.
  • Ensure that staff who assess funding proposals are able to assess development cooperation proposals in relation to mainstreaming disability, extent of consultation with disabled persons, and what constitutes a quality disability-specific programme
  • Awareness-raising should use a human rights-based social model of disability and draw attention to the ways in which disabled persons are excluded and discriminated against, and to the results of poverty and lack of access to information.
  • Awareness-raising should also acknowledge the different individual needs of disabled persons; people with different impairments and degree of impairment may or may not have a need for rehabilitation or assistive devices. There are particular groups of disabled people who are even more vulnerable and in danger of being excluded - these groups should be actively taken into account
  • Different contexts should be acknowledged; the 'South' embraces a very wide range of cultures and context, which result in different issues and priorities for disabled persons. In addition, there are particular situations; conflict, refugee, natural disasters, high levels of institutionalisation, countries with high levels of HIV/AIDs which also need to be taken into account. It is always the best policy to consult directly with representative DPOs on the ground.
Collaboration with Other Agencies:
  • Work with the World Bank to develop disability into the Poverty Reduction Strategy Paper (PRSP) process. Information about disabled people should be required within the PRSP assessment guidelines. Civil society participation processes need to reach out to include disabled persons and make processes accessible.
  • UN agencies: The EU should work closely with the UN.
This is particularly crucial in light of the work to prepare a consideration of proposals for a UN Convention on the rights of disabled people which is currently being prepared by a UN adhoc Committee.

This effort is also most relevant in light of the European Commission communication on this UN Convention and the European Commission proposals in the Communication on EU-UN Relations.

EU closer working practices are needed particularly with UN agencies and departments with experience in disability and development issues: WHO Disability and Rehabilitation Unit (promoting CBR), UNESCO Section for Combating Exclusion through Education, UNHCR, UN Special Rapporteur on Disability, ILO and UN Monitoring Committee on the Convention on the Rights of the Child.
  • International NGOs; Much EU aid and three quarters of its humanitarian aid is channelled through international NGOs. EU needs to encourage and insist that INGOs also mainstream disability issues. The EU can also learn from examples of good practice in INGOs that have made progress in integrating disability. Networks and umbrella organizations such as the IDDC and EDF plus networks of mainstream development NGOs should be collaborated with.
Monitoring, Evaluation and Research:
  • Disaggregate all data according to disability along with other criteria such as gender and geography
  • Develop impact indicators using a human rights and social model approach to disability, integrally linked to poverty reduction indicators.
  • Involve disabled persons themselves in the processes of monitoring, evaluation and research
Programming:
  • Ensure that a twin-track approach to programming is implemented
  • Mainstreaming disability by removing disabling barriers and inclusive planning should be prioritised, but appropriate disability-specific programmes need to be supported in order for mainstreaming to happen. Performance criteria in contracts need to include disability.
  • Disability-specific programmes should focus on support to DPOs and Parents Organisations, and on the development of appropriate rehabilitation (low-cost assistive devices, person-centred therapies). Good practice in community-based and participatory approaches should be utilised.
  • Social sectors (education, health and employment) and poverty alleviation should be priorities for mainstreaming, as stated by Commissioner Nielson in April 2001. Examples of good practice in integrating disability into health (some CBR programmes), Inclusive Education in economically poorer communities, and integrated vocational training, employment and credit initiatives
  • Programmes focusing on prevention of impairment should address poverty, social and environmental issues and be fully integrated into promoting basic health access for all. Prevention of impairment initiatives should not be considered as disability programmes.
Promote Accessibility:
  • Accessibility is a key issue in mainstreaming disability; it should be considered as a cross-cutting issue and understood in reference to communication, participation, transport and environment
  • Accessible communication for poor disabled persons is related to lack of literacy, lack of life experience, lack of opportunities to learn Sign language or Braille. So to include poor disabled persons, communication methods need to make use of creative, person-centred approaches such as theatre, storytelling, drawings, puppets; methods that are tried and tested with poor communities globally
  • Sign language interpretation, Braille, tape, large print all need to be available in order to enable disabled persons who are able to use these methods to access information and to participate in consultation relating to EU programmes
  • Accessibility in poor countries is closely linked to poverty factors, lack of infrastructure, harsh environments, lack of access to food and clean water etc. Disabled persons need to be included in measures to make environments and transport accessible for all and to access basic needs.
Funding:
  • Develop Criteria for assessing disabled person's inclusion and participation in general development programme proposals
  • Develop Criteria for assessing the quality of disability-specific programmes. E.g the difference between proposals that promote inclusion, full human rights, and use the social model, and proposals that are based on a medical or charity model.
  • Consider allocating a percentage of budgets (3% is used by the Indian government) for poverty reduction programmes to include disabled persons.
  • Continue to add specific mention of disability in all budget lines, as
Make Poverty Reduction effective and inclusive:
  • Key reforms are needed within the EU in order for poverty reduction to work in practice. The EU will be unable to protect the rights of disabled persons without implementing these general reforms that have been highlighted by international NGOs and the EU's own monitoring process. 'If poverty alleviation takes place, inclusion becomes possible' [20]
  • EU members must work towards the recommended 0.7% of their GNP to be allocated to development cooperation. This budget must include increased proportion of funding to promote the inclusion of disabled persons
  • EU Member governments must work towards the 20-20 initiative, ensuring that 20% of both member and participating government's budgets are earmarked for the Social Sector. Within the social sector, funding should support inclusive, non-discriminatory education, health, and employment programming, together with support for disability-specific programmes.
Make use of the European Year of Disabled Persons:
  • Focus on Development Cooperation: the activities relating to the European Year of Disabled Persons (2003) should include a focus on disability and development cooperation issues
  • EU Conference on Disability and Development should be convened in order to bring key players and governments together on the issue of disability and development cooperation. The Copenhagen Conference on the Disability Dimension in Development Cooperation was a successful and very productive event that brought together 4 Nordic countries, and provided a basis for these countries to develop practical action plans. The strengths of this conference could be build upon and used to raise awareness in other EU countries.
References
  1. Christian Aid (2002) Ignoring the Experts - Poor People's Exclusion from Poverty Reduction Strategies http://www.christian-aid.org.uk/indepth/0110prsp/prsp.htm
  2. Copenhagen Conference Report (2000) Inclusion of the Disability Dimension in Nordic Development Cooperation Denmark: DSI
  3. Department for International Development (2000) Disability, Poverty and Development Issues Paper. London: DfID
  4. Elwan, A (1999) Poverty and Disability, A Survey of the Literature. Washington: The World Bank
  5. Short, C (2001) Poverty; Bridging the Gap London: DfID
  6. The UN (1994) The Standard Rules on the Equalisation of Opportunities for Persons with Disabilities New York: The UN
  7. Werner D (1986) Arguments for Including Disabled Children in Primary Health Care Paper presented at CBR conference in Kenya
  8. Yeo R (2001) Chronic Poverty and Disability Frome: Action on Disability and Development


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