State Secretary Olav Kjørven

Achieving Full Citizenship for All. Challenges and Strategies

Opening address - the 8th International Congress on Including Children with Disabilities in the Community, June 15, 2004

Princess Märtha Louise, Your Excellencies, congress delegates,

According to United Nations figures, more than one person in twenty has a disability. More than three out of four of these live in a developing country. More often than not they are among the poorest of the poor. Recent World Bank estimates suggest they may account for as many as one in five of the world’s poorest. Disability limits access to education and employment, and leads to economic and social exclusion.

Talking about disability in a global perspective makes little sense if we do not also place it in the context of poverty. This interrelation is what I want to focus on today.

I am very honoured to be invited to deliver the opening address at this 8 ^th> International Congress of its kind, and to be addressing such a distinguished audience. Your discussions during the next few days will hopefully help us along the way towards more knowledge, better understanding, new ideas and sharper tools in our common struggle for an inclusive society wherever we live.

The Chronic Poverty Report of 2004-2005 describes it this way:

“Disabled people have a higher likelihood of experiencing long-lasting poverty because of the environmental, attitudinal and institutional discrimination faced, from birth or the moment of impairment onwards. A person with impairment only becomes disabled when physical and social barriers limit her or his opportunities. … While disability is certainly both a cause and effect of poverty, it is not inevitable that impairment, illness and injury lead to stigmatisation, exclusion, discrimination and disability. However, once marginalisation on the basis of an impairment occurs, the likelihood is that a vicious cycle of exclusion, loss of income and persistent poverty will emerge.”

According to the Report, discrimination against disabled people may take many forms, but is often rooted in widely shared attitudes, values and beliefs. In some places disability may even be associated with evil, witchcraft or bad omens. It says that, “Low expectations of disabled people are often held by wider society as well by themselves.”

So far the Chronic Poverty Report.

In my opinion, these figures and quotations not only illustrate the complexity of the issue; they also very clearly identify the challenges.

• How can we break this vicious cycle?
• How can we change attitudes?
• And how can we contribute to an environment that fosters self-confidence and dignity for all?

I have two short stories I want to tell you:

In Lesotho there is a street called Hlalele Street. Hlalele is not the name of a member of the royal family. Nor is it the name of a politician or a celebrity. Hlalele is a 15-year-old boy with a developmental disability, who lives in the street.

It was the family’s neighbours who decided to name the street after Hlalele. His mother is naturally very happy about it, and thinks it says a lot about the community’s acceptance and tolerance of disabled people. She says:

“Hlalele owns this street – it belongs to him. He loves to walk along the street, picking up small things from the road or the pavement and examining them, and he drops in on the neighbours when he needs a rest. Then they phone us and say: “Don’t go looking for Hlalele, he’s here with us.”

A mother who talks openly about her child with a developmental disability in Lesotho is not to be taken for granted. It is even more rare to find a street named after a person with a developmental disability. The prejudice against disabled persons has often caused parents to hide their disabled children. Many believe that disabilities are the result of curses and witchcraft, although Hlalele’s mother never did. But she had to struggle on Hlalele’s behalf, and her efforts have changed the lives of many families with disabled children in Lesotho.

Being mother to Hlalele also changed the life of Palesa Mphole. She stopped working as a teacher and started on the enormous task of establishing the first organisation for families with a developmental disability – the Lesotho Society of Mentally Handicapped Persons. With support from among others the Norwegian Association of Persons with Developmental Disabilities, the Society has grown rapidly to become a powerful voice for the people with developmental disabilities in this small country. The Society now has hundreds of members, and local branches in seven out of the ten provinces of Lesotho.

Although of course there is still much to be done, much has improved for families with developmental disabilities. One of the major improvements is the inclusion of disabled children in the schools. Hlalele goes to a school where 10 per cent of the pupils have a disability.

Nineteen-year-old Obarassa John plans to become a doctor. A few years ago he would never have dared to make such an ambitious plan. A few years ago he crawled into the bushes every time visitors came by.

As a small child Obarassa was taken to hospital with severe malaria. After a while the family no longer had enough money to keep him there for treatment, so he had to complete the treatment at home. When he was cured, he was no longer able to stand, and had to crawl around on his knees. The parents believed there was a curse on Obarassa and almost got divorced because they fought so much about where the curse could come from.

Fortunately for Obarassa he came in contact with the Community Based Rehabilitation Programme, which began training him to walk again. They also managed to convince his parents that Obarassa’s disability had nothing to do with spiritual witchcraft.

After a while Obarassa was able to walk on crutches, which had been made by a local group of disabled people. Now he walks to school every day, while friends carry his books. He is one of the best pupils in his class and has excellent grades. Besides going to school he runs a little shop where he sells soap, salt, oil, and a few other items. This brings him in some money, but when he finishes school he plans, as I said, to start a new career: “I am not going to stay here forever. My dream is to study to become a doctor in Kampala,” he says.

His father is also very proud of him: “I never thought Obarassa would be able to do anything on his own. I thought he would be crawling around here for the rest of his life. Now I am very happy. God bless my son,” he says.

I find these stories moving, and I am grateful to the Norwegian Atlas Alliance for sharing them with me. These stories tell us that attitudes can be changed, that self-confidence can be built up, that dignity can be restored, that vicious cycles can be broken.

This is what should inspire our future efforts.

The international efforts on behalf of people with disabilities are being increasingly based on human rights. The UN system has encouraged this trend for the last 20 years. It is a positive trend, since it does not treat the disabled as a separate group, but is based on the natural, self-evident fact that the disabled have the same rights as everyone else and with the ability to decide their own lives.

Fighting poverty remains the single most important challenge in the world today, and fighting poverty is fighting for human rights. Poverty is the major obstacle to the realisation of human rights for all.

The link between development and human rights was already a key factor in the Norwegian Plan of Action for Human Rights that was launched in 1999. Two years ago the Norwegian government reinforced this emphasis in its Action Plan for Combating Poverty in the South towards 2015, which outlined how Norway will contribute to achieving the Millennium Development Goals. Then, in May this year, the Government presented a white paper on the new Norwegian development policy to the Norwegian parliament, “Fighting Poverty Together”. Again human rights are a cornerstone. The white paper opens with the words “Dignity for all!”

The white paper also pays specific attention to vulnerable groups, the disabled in particular.

A large proportion of disabilities are preventable. Achieving the international development targets for economic, social and human development under the Millennium Development Goals (MDGs) will undoubtedly reduce the levels of disability in many poor countries. However, general improvements in living conditions will not be enough. Specific steps are still required, not only for prevention, but also to ensure that people with disabilities are able to participate fully in the development process, obtain a fair share of the benefits, and claim their right to be full and equal members of society.

This is also why a separate Plan for the Inclusion of Persons with Disabilities in Development Co-operation was adopted in 1999. The plan is very ambitious and states that, “Efforts will be made through development co-operation to improve the situation of persons with disabilities and to ensure that their rights are safeguarded in areas such as public services, accessibility, health, education, employment, organisation, culture, democratisation and co-determination.”

Furthermore: “Development co-operation efforts must be aimed at identifying problems experienced by persons with disabilities and ensure that they are taken into account in both bilateral and multilateral assistance.”

I don’t want anyone to imagine that we are completely satisfied with ourselves when it comes to implementing this plan in every area. However, we are actively pursuing our goal, and together with our partner countries and in partnership with a variety of other bilateral and multilateral actors we are making progress.

I would like to use this latter part of my intervention to give some examples.

In the Norwegian strategy for delivering Education for All by 2015, support for vulnerable groups is a priority. As part of the strategy Norway will seek through its development co-operation to ensure that children with disabilities receive relevant schooling. This will be done both by specialised programmes and through integration. An important part of this work involves raising the awareness of the children, their families, the teachers and the authorities regarding the universal right to education.

Norway is supporting projects and programmes in the education sector in Africa, Asia and Latin America. A major part of this support is channelled through sector programmes with our main partner countries. Norwegian and international NGOs also play an important role in assisting their partners in civil society to promote education for children with disabilities.

In Nepal Norway is participating together with several other donors in a sub-sectoral programme in basic and primary education, which also targets children with special needs. One of the measures is mobilising local communities with the help of school boards and parent-teacher associations to encourage and maintain access to education for disadvantaged groups. Disabled children have received special scholarships and the schools have received direct earmarked support for including children with disabilities. Many teachers have participated in special education courses and technical support has been provided by national and international experts. Follow-up indicators have been defined for measures targeting disabled children, and the indicators have been taken into account in reviews and evaluations. Links have also been established with certain NGOs experienced in community awareness raising.

The situation in Nepal could be illustrated in this way:

If you visit a local school high up in one of the deep valleys of Nepal, you may find a classroom that has been especially adapted for children with disabilities. In a class for deaf children you may see children who have learned sign language and are becoming literate and how eager they are to learn. You may see colourful teaching aids on the wall and a committed and enthusiastic teacher. Outside the classroom you may meet the enthusiastic chairman of the local deaf association.

But on the other hand you may visit a classroom for blind children, which only has a few pages of Braille and nothing much else for the children to read. The teacher may complain about lack of support and about the fact that additional material is still waiting for delivery in the capital Kathmandu.

The programme in Nepal was evaluated recently, and the evaluation team concluded that: “While some districts had provided inclusive education for children in specific disability categories, the number of students participating was very small compared with the needs at district level, and sometimes supply problems severely hampered the potential benefits of the programme.” The evaluation team also concluded that it was difficult to evaluate whether accessibility had improved due to lack of relevant and systematic data. This points to a very general problem: the need for more knowledge.

The situation in Nepal shows that the first steps towards Education for All have been taken. The political authorities have committed themselves to the principle of inclusion and many local communities have been made aware of their rights and obligations. But still there is a long way to go before all children can read and write and participate fully in society.

Due to lack of resources, Education for All is a huge challenge for many developing countries. Very often the learning needs of disabled children are not included in national plans or legislation. And there is a lack of co-operation and co-ordination between the various responsible ministries (for education, health, etc.)

Disabled children also pose special challenges for teachers in terms of both teaching methodology and teaching aids or special equipment. Nevertheless, the ability to make good use of local resources may be quite advanced. The challenge is to use these local resources to create a positive learning environment adapted to the needs of disabled children.

In many countries, as I mentioned earlier, superstition and illiteracy lead to stigmatisation and isolation of children with disabilities. Fighting such attitudes is part of our campaign for the right to education for all. At the same time education and literacy are a major tool for combating superstition and a precondition for making the necessary changes in society.

One very important aspect of the rights-based approach is empowerment and participation. We regard the Norwegian disabled people’s organisations as important strategic partners in these efforts. We therefore channel considerable support through these organisations, which work with their sister organisations in the South.

Norwegian disabled people’s organisations have taken advantage of their members’ experience of developing appropriate services, fighting for equal opportunities and access to society, and developing their organisations. The members and staff of these organisations meet people with disabilities in partner countries, learn about their situation and needs, and co-operate with them on projects intended to improve access to education, health services and rehabilitation. In these efforts they make use of their own experience from Norway to provide useful and practical support for the development of advocacy organisations in the partner countries.

In 1996, the Norwegian Association for Developmental Disability, or NFU, began collaborating with a small local organisation for parents with disabled children in Dar es Salaam. At the time there was no national leading organisation for disabled people in Tanzania.

Within a short time, and with support from Norad and assistance from the Norwegian Association, the local organisation was showing an impressive rate of growth. Local networks were formed, and knowledge transfers in organisation building were taking place. By stressing the importance of parents’ contributions, the Norwegian Association helped to make the organisation nation wide. The organisation is now the largest organisation for the disabled in Tanzania, with considerable influence on policy, and it acts as a watchdog for the rights of the disabled.

In Uganda, the Norwegian Association of the Disabled co-operates with the authorities on community-based rehabilitation. The Norwegian Association is also the most important partner of the National Union of Disabled Persons of Uganda, which is an umbrella organisation for about 80 organisations of disabled persons. The Norwegian Association has assisted in the strengthening of the National Union, in particular by supporting competence building and activities promoting respect for the rights of the disabled and change of attitudes among the population.

The National Union has become very influential at the policy level, and has played a leading role in the drafting of a new civil code for Uganda. The new civil code includes a number of rights for the disabled, including the right to be represented in national political bodies.

The National Union is also represented in all local districts in district coalitions. The Union’s considerable influence at central and local level is an extraordinary achievement by any standards.

At the multilateral level we also do our best to raise this issue, especially as a cross-cutting issue. The UN system has shown itself to be a valuable channel. UNICEF, ILO, WHO and several other UN agencies have good programmes for the disabled, even though they cannot deal with all the challenges. Norway’s efforts in connection with anti-personnel mines are especially important, since this work is vital for avoiding disability and helping those who have been injured. Norway played an active role in the process leading up to the ban on anti-personnel mines, and we continue to maintain a high level of support for mine action, including mine clearance and assistance to mine victims and rehabilitation programmes.

The World Bank is of course a major actor in the multilateral arena, and its recent efforts deserve to be mentioned.

As a follow-up to the Action Plan, Norway initiated a dialogue with the World Bank on how to improve the situation of persons with disabilities. This coincided with some of the Bank’s current activities: some of the staff had taken an interest in this issue and wanted support from Norway for mainstreaming disability in development.

The question was how to do this in an institution that is a mix of a “development university” and a lending institution. It was obvious that research on disability was important, but a link with lending operations was also needed. This led to the establishment in 2001 of a Trust Fund for Disability and Development.

The fund supports issues like inclusion – bank staff can submit proposals on how to integrate inclusion aspects into mainstream World Bank programmes and projects. It supports activities like gathering Household Survey Data, analysing in more detail the linkages between disability and poverty. It supports country studies, where issues like labour market conditions, pensions, access to education, health and other social services are dealt with.

The fund also supported the work of including the disability issue in the PRSP Source Book and Project Toolkits.

The Trust Fund is in the process of becoming integrated into the Trust Fund for Environmentally and Socially Sustainable Development. This is a multi-donor trust fund that provides grants for World Bank activities that mainstream the environmental, social and poverty-reducing dimensions of sustainable development. It is intended to help develop Bank and client country capacity, promote inclusion of these cross-cutting issues into World Bank operations, and foster co-operation between units in the World Bank and with the United Nations and other external agencies and groups.

Norwegian support for the focus on disability in the World Bank has helped to make the Bank a driving force in the work on disability in development. A dedicated and influential disability unit in the Bank has taken the lead in establishing a global partnership on Disability in Development.

The Bank recognises that if we are to alleviate poverty in developing countries and make real progress toward achievement of the Millennium Development Goals, disabled people must be explicitly taken into account in national and international economic development efforts. The social and environmental obstacles that marginalised and impoverished disabled people face cannot be removed by any one entity or organisation, but only through the concerted efforts of many different actors, including developing countries, bilateral and multilateral donors, UN agencies, national and international NGOs, and foundations.

The idea of a global partnership focusing on disability and economic development arose in informal discussions at the celebration of United Nations International Day of Disabled Persons at the World Bank in December 2002. The discussions continued at a brainstorming meeting in Helsinki in May 2003, in Durban in September 2003, and in Rome in December 2003. At the last partnership meeting in Washington in May, there was general agreement on the following guiding principles for this partnership:

• Use existing administrative structures.
• Establish forms of co-operation that do not require the creation of new structures .
• Make it possible to work both in a co-ordinated way towards shared objectives, but also to pool funds in a partnership trust fund.

Italy has generously announced its contribution to this fund and we are considering joining. The main objective of the partnership will be to provide a mechanism for ensuring NGO and developing country influence. Disabled people, as represented by NGOs, must have a strong voice in the design of programmes and activities that affect them. There must be a way for developing countries to make their needs known, and to raise questions and issues.

Securing the human rights of disabled people is essential to their economic progress, and economic progress makes it possible for disabled people to actually benefit from these newly secured rights. Finally, a Global Partnership for Disability and Development should contribute to the successful implementation of the UN Disability Convention.

After this brief review of our development policy, I would like to turn to the international rules in the field of human rights that are relevant to the disabled.

First, the United Nations. Just after the end of the UN Decade of Disabled Persons, in 1993, the General Assembly adopted the UN Standard Rules on the Equalisation of Opportunities for Persons with Disabilities, a process where Norway and the Nordic countries had been prime movers. In our view these standard rules should form the basis for international efforts in this field.

The only one of the UN human rights conventions to make special mention of persons with disabilities is the Convention on the Rights of the Child. The disabled are not mentioned in the other core conventions for historical reasons. But the principle of non-discrimination of persons with disabilities has general application. This has been set out in for example the Vienna Declaration of 1993 and in the Standard Rules. The principle is reaffirmed regularly by the UN Commission on Human Rights, which adopts a resolution every second year concerning the human rights of the disabled, with Norway as co-sponsor.

The work on a separate UN convention on the rights of persons with disabilities has proved to be slow and difficult. The working group has just finished its third session, and a large number of policy options have been proposed. At this stage it is too early to say what the outcome will be. Norway wants to see a rights-based convention with an emphasis on non-discrimination, equality, participation and the right of self-determination. The main responsibility for the situation of the disabled lies with states, and the requirements for implementing the convention must therefore be worded in such a way as to allow for a certain amount of adaptation at the national level. The definitions will be a difficult issue. Terms that are sufficiently general must be weighed against terms that are sufficiently precise. We will continue to follow this work closely, and in this regard will maintain contact with the relevant organisations in Norway and other likeminded countries.

The main focus in this conference is on children. I would therefore like to say a few words about Norway’s new Children Strategy, which is to be launched in the very near future.

The first Norwegian strategy for “Children and Development” was launched in 1992. The decade opened with the adoption of the UN Convention on the Rights of the Child in 1990. This created genuine optimism for the future of the world’s children. But the sad fact is that despite all our efforts, the decade has only led to a few significant improvements in the everyday lives of the world’s children and young people. This is why – more than ten years later – Norway is adopting a new strategy. It is for both children and young people, and has the working title “Two billion reasons”. It recognises that we need new momentum, and that the Millennium Development Goals are a good starting point.

The 1992 strategy discussed the need to focus on children’s vulnerability, but the new strategy makes vulnerability the leading theme.

Its 10 priorities include

• facilitating the provision of adequate basic education for every boy and girl,
• protecting all children against illness and disability through vaccination,
• protecting all children and young people against war and violence, exploitation, abuse and discrimination,.... and
• bringing particularly vulnerable groups of children and youth back into to society as respected citizens with full rights.

The new strategy proposes an integrated, multi-sectoral approach, both in general and in relation to vulnerable groups. It links early prevention and rehabilitation with rights-based empowerment strategies and changes in attitudes.

To conclude where I started, the issues of vulnerability and disability must be placed within a broader context, the context of fighting poverty. Together we must eliminate the underlying factors that produce and reproduce poverty. Internationally, the focus must be on the need for structural reform in global trade and ways of making development co-operation more effective. In our partner countries; - on promoting good governance and a more equitable distribution of resources. The civil society and the private sector have an important role to play. I hope to see disabled people and their associations at all levels at the forefront of this basically structural struggle against poverty – just as they are already at the forefront of the struggle for disabled people’s rights.. ... And one day, I hope to hear that Obarassa has become a doctor.

Finally, I would like to wish you a very successful and productive conference. Thank you for your attention.