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.
