Abstract
This project was initiated by the International Save the Children Alliance Task Group on Disability & Discrimination, to document examples from around the world of a) violations of disabled children's rights, and b) examples of good practice and working towards good practice, according to the UN Convention on the Rights of the Child (CRC).
The project objectives are:
a) to raise awareness and
reinforce the fact that every Article of the CRC also applies to disabled
children, not only Article 23;
b) to provide concrete examples to help the
Committee on the CRC to monitor implementation more closely;
c) to provide
an advocacy tool for local and international organisations, parents' and
disabled people's organisations in promoting = the rights of disabled children.
Several major issues are emerging as the documentation
progresses:
a) the absence of disabled children in most documentation
or discussion of children's rights;
b) the compartmentalisation of disabled
children under certain Articles - mainly Article 23;
c) that examples of
good practice are happening all over the world, but these need to be recognised
and shared.
This paper will discuss these and other issues arising from the project, and their implications for the implementation of disabled.
Background
Every Article of the UN Convention on the Rights of the Child (CRC) applies to all children without exception. Or so the theory goes. We cannot assume, however, that initiatives to improve children's rights automatically benefit the most marginalised children.
In order to raise awareness and promote the rights of one such group - disabled children, a project initiated by the International Save the Children Alliance (the Alliance) Task Group on Disability and Discrimination is documenting examples of violations and good, or improving, practice in relation to disabled children and the CRC. The aim is to produce a compendium of examples, which will be a resource for use in promoting the rights of disabled children. Begun in August 1999, a wide variety of respondents all over the world have contributed examples, including disabled adults and children, parents, local and international NGOs and advocacy groups. Data has also been taken from published documents.
The research does not aim to be statistically valid, nor to provide a representative overview of the lives of disabled children. However some general conclusions can be drawn from a broad analysis of the data.
Of a current total of almost 400 examples, by far the largest proportion of examples - 42% (160) relate to Articles 28 & 29: the child's right to education. In view of the fact that disabled children, globally, remain largely unreached by education, this paper discusses some of the issues on the right of disabled children to education.
Criteria for violations and good practice
It may be useful at this point to clarify some of the underlying assumptions and definitions adopted by the Alliance Task Group.
1 Good practice, or working towards good practice
Good practice is not fixed and absolute. What may be considered progress towards good practice in one country could be a backward move in another. In this research, any initiative that results in improvements in disabled children's lives may be included, e.g:
| Ethiopia is moving forward, from previously totally excluding disabled children from education system, to accepting that they can be educated "as the resources of the country permit". (Haile & Bogale, 1999) |
This is a step in the right direction in terms of the right to education. At the same time, however, it is still a violation of Article 2: non-discrimination, and Article 3: the best interests of the child.
2 Violations
A violation is when a right has been either breached, or simply not implemented. For a disabled child, the violation may be in comparison to the treatment of others in the community or family, e.g. all children in the family go to school except the disabled child. Factors contributing to violations:
2.1 Invisibility of disabled children
One of the first and most striking features to emerge from the data was the overall invisibility of disabled children. This may be because
| In Russia, medical staff routinely pressure parents to abandon a disabled child at birth to an institution, by warning them about the child's future life as a 'social pariah'. This is in direct contravention of Article 9: separation from parents. In the institution, the child is likely to be 'denied virtually every right to medical care, education, and individual development… officially classified as 'ineducable', and excluded from opportunities to learn to read, write, and in some cases, to walk. (Human Rights Watch, 1998). |
| In Viet Nam, in order to calculate the school attendance rate, disabled children, along with unregistered and migrant children, are first subtracted from the total of primary age children. (Bond, 1998). |
| A report commissioned by the UK Down's Syndrome Association cites the case of a six month old child who was given no pain relief after undergoing heart surgery because according to the doctor "Down's children don't feel any pain." (Rutter & Seyman, 1999) |
1 Discrimination
For the disabled child, the principle of Article 2: Non-discrimination underpins all articles of the CRC. Some forms of discrimination are easier to identify than others.
2 Direct discrimination is the most obvious, where a disabled child is treated in an inferior way to non-disabled children. For example, an education policy which specifically excludes some disabled children from education:
| In Buenos Aires, Argentina, children with physical disabilities added to severe or profound learning disabilities are excluded from school and from the educational system. In fact, a child "must show progress in his learning process" and "have prediction of educability suited to curriculum targets" to deserve remaining at a special school. Social Security System regulation says : "Profound and severely disabled children or adolescents that because of the characteristics of their disability cannot have access to the curricula of Special Schools, go to Day Care Centers" These Centers are outside the education system, and they do not have any educational objective. |
3 Indirect discrimination is more subtle, but equally damaging. It can take the following forms:
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Absence of law or policy, as in Swaziland, where several representatives of disabled people's organisations (DPOs) emphasise the lack of policies on disability issues and services for disabled people. |
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Non-implementation of law or policy can happen when laws and policies exist, but are not put into practice: |
| Uganda has enshrined human rights for disabled people in the Constitution, and is to be applauded as the first country in the world to recognise Sign as an official language. Meanwhile, however, a letter from a disabled Ugandan secondary school student tells a woeful tale of his struggle to meet his most basic rights: "Despite the fact that I am a lame orphan in senior three, the government still requires me to pay school fees… I have a right to good health but whenever I go to a hospital or clinic, money is needed for treatment and I do not have any. I am demobilised because I lack a wheelchair. I am simply surviving on crutches." |
For example, education policy which states that mainstream schools are open to all children may seem non-discriminatory. In reality, however, disabled children may still not be able to attend school, because nothing has been done to make education more accessible: the curriculum may still be as rigid, buildings may still have too many steps, and teachers may still lack skills and awareness.
| One Swazi woman with a physical impairment remembers her schooling: "Some teachers had a negative attitudes towards me. They expected me to perform like the non-disabled, e.g. walking fast, and not understanding why I sometimes came late for school." |
The UN Human Rights Committee recognises that: 'the principle of equality may require affirmative action in order to diminish or eliminate conditions which cause … discrimination'. (quoted in DPI, 1998). In other words, a disabled child may need something different, in order to access the same rights as others.
Countries as disparate as Japan, Argentina, Georgia and other former Soviet bloc countries use diagnostic criteria to determine whether or not a child is entitled to education, and if so, what kind of education. Often it is the impairment which determines the type of school the child will attend, if at all, rather than the needs and abilities of the child, or the views of the child or parents. This is in direct violation of Article 29: Education suited to the child's talents; and of Article 5: Responsibilities, rights and duties of parents, let alone Articles 2: Non-discrimination and Article 3: Best interests of the child.
In Bulgaria, multi-disciplinary commissions have the role of deciding where a child may go to school. This Bulgarian mother relates her struggle to educate her child with a hearing impairment:
| "I have tried several times to enrol him in kindergarten. The first
time I tried to get him into a special kindergarten for children with general
health problems, where the kindergarten Director was willing to accept him. But
the problem was with the Diagnostic Commission, who would not allow this,
"because the child has no communication," they said." Another mother added:
"Once the child has been rejected, it is difficult to change the diagnosis."
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4 Lack of resources
The disabled child may face the violation alongside other children, e.g. lack of basic health care facilities, but the adverse impact is often far greater on the disabled child.
| In Zimbabwe, a survey of two poor communities shows that health and education services for the general population are inadequate. Although a few disabled children attend school, teachers do not have the skills to help many more. These children are denied not only an education, but also the opportunity for integration into society. (Save the Children/UK, 1999) |
How can this analysis be used to inform the debate on inclusion?
As data started to be analysed, it became clear that the framework was far too simplistic, and that most of the examples do not fit neatly into one neat category - either good practice or violation, but are more often examples of both. Take the following example:
| Philippines: Annie, a 10 year old Grade 1 student with polio has learning difficulties. In spite of her learning difficulties, her parents sent her to school like any normal child. Later on, a teacher in the same school advised her parents to send her to a special education school in the city where she is at present enjoying school together with kids of her own level. |
Some might argue that in terms of the right to education, the child's right is fulfilled, and thus mistakenly claim it as an example of good practice. In this way, as long as there is no common vision to guide us, the principles of inclusion remain open to reinterpretation any 'rubber duck', or 'wild goose'.
What is needed is a set of non-negotiable core principles on guide our practice, and this is where the CRC comes in. It provides a set of criteria in the shape of the four underlying principles of the CRC, i.e. non-discrimination (Article 2), survival and development (Article 6), best interests of the child (Article 3), and respect for the views of the child (Article 12).
Using these four criteria to assess the above example, it could conceivably pass on survival and development, in that she is receiving an education. But the child is clearly a victim of discrimination, in that she has been rejected from her local school on the grounds of her impairment. Is it questionable whether it in the best interests of the child to be separated from her family and local community, and it is unclear whether the child's view has been taken into consideration.
If judged by these criteria, it is clearly not an example of good practice of inclusion. This is because rights cannot be implemented in isolation from each other.
One of the basic principles of international human rights law is the indivisibility and interdependence of rights. This means that all rights have equal status as rights and it is necessary to look at the full range of human needs: physical, psychological, developmental and spiritual. As the Committee on the Rights of the Child has pointed out 'All rights are indivisible and interrelated, each and all of them being inherent to the human dignity of the child. The implementation of each right set forth in the Convention should therefore take into account the implementation of and respect for, many other rights of the child." ' (UNICEF, 1999, p.7)
Turning rights into reality
The second important purpose of this project is to provide concrete examples of how child rights has been implemented in practice. Three important features emerge that characterise effective action:
5 Challenging discrimination - challenging the medical model
Some of the most successful projects are based on a social model of disability, which provides an alternative to the more widespread but discriminatory medical approach. A strong feature of these projects is addressing barriers to participation in the community. These barriers may be in the physical environment, or to do with lack of access to existing services, or with attitudes and behaviour of family and community.
| In Viet Nam, until recently, the only support available for a family with a young disabled child was medical treatment or physiotherapy. The 'Care in the Community' project in Ho Chi Minh City is providing one much needed alternative. The project works with parents, volunteers and service providers, providing information and skills, encouraging them to meet and support each other with advice and practical help (Jones, 1998). One local government official admitted: 'In the past we would advise parents of disabled children to keep their children at home - hidden away. We see now that was a mistake. Now we encourage them to bring them out.' (Chalker, 1998) Community workers are involved not only with the family, but also with the neighbours, to encourage a more welcoming social environment. Many disabled children who had previously dropped out or been refused are now attending school. A District-level policy of inclusion has ensured that teachers receive training, and equipment is provided to children who need it. One family received a loan to help buy a bicycle to take their child with a physical impairment to school each day. The project sees education as not only taking place in school. Two older children with physical impairments have been taught at home, both can now read, and one has started composing poetry. His own self-esteem and that of his family has increased dramatically. (Tran Thi Nhieu, interactive session 13.17G) |
6 Dissemination of information, knowledge and skills
The data indicates that one of the most common factors contributing to a violation is a lack of information, knowledge and skills. This is illustrated by a comment from a DPO representative in Swaziland: 'The [blind] child's rights are often violated, not because the parents intentionally do it but due to ignorance… The parents themselves need support and education'
| The Lesotho Society for Mentally Handicapped Persons (LSMHP) is working with local NGOs and government agencies in awareness-raising and lobbying for the rights of the disabled. The LSMHP is represented on the NGO Coalition on the Rights of the Child, whose purpose is to monitor and promote practical implementation of the UNCRC, thus ensuring that disabled children are not forgotten (LSMHP, 1999). |
| In Swaziland, CBR workers work closely with primary school teachers in schools. They use Child-to-Child methodology to encourage children to compose songs and perform plays which raise school and community awareness of issues such as safety on the roads and in the home, HIV and AIDS and disability. Children and community workers have been actively involved in educating communities about the need for inclusion by challenging existing negative attitudes towards disabled people. (EENET, 1998a) |
New ideas can be difficult to put into practice when there is a lack of understanding, skills, and confidence, and with no-one to consult when a problem arises. Support networks can be crucial, and parents can be make a vital contribution.
| In Lesotho, the Ministry of Education recognises that parents of disabled children are a valuable resource in supporting the implementation of inclusive education. The Lesotho Society of Mentally Handicapped Persons has organised training for parents, who are now able to assist and advise teachers how to meet the needs of their disabled children at school. Parents are invited to give talks and to share their experience during teachers' seminars. (Palesa Mphole, LSMPH, S3.2 & Paper 9.7) |
3 Learning to listen to disabled children
It is a fundamental right of children to have their voice heard on issues that affect them (Article 12). It is a vital aspect of a child's socialisation, is a cornerstone of child protection, ensuring that the best interests of the child remain in focus, and is fundamental to the child's understanding of their role and responsibilities in the democratic process.
The issue of children's participation is currently at the forefront of policy and practice of many NGOs, yet disabled children are only just starting to be included. These two examples demonstrate how the voice and opinions of children can form an integral and informative part of improving the practice of inclusion.
| Zambia: Paul Mumba, primary school class teacher, describes his experience of the 'Democratisation of Primary Education'. The opinions of his students are fundamental in deciding what should be taught and how, and in evaluating their own and each others' learning. At the same time, rather than accept the Special Unit model of Special Education which has been imposed on the school, disabled children are instead welcomed into the ordinary classroom, where the principle resource is the support of non-disabled children. Because the educational process is based on democratic participation, the disabled children are also encouraged to voice their opinions on their learning process (Paul Mumba, S3.2 & 6.9) |
| Nepal: The Community-based Rehabilitation Service based in Pokhara, promotes the inclusion of disabled children in mainstream schools (among many other activities). A teacher training programme was recently implemented for teachers with children with physical impairments in their class. Participants were not only teachers, but also parents and disabled pupils. In groups, they were asked to discuss and analyse some of the successes and problems they experienced at school, which they then presented to the whole group. The result was that the disabled children's concrete concerns were subsequently addressed by teachers and parents, and adults gained a new respect for the views and abilities of their children and pupils. (Krishna Lamichhane, S3.2 & 10.9, Jane Schofield-Gurung, 9.6) |
Summary
All Articles of the UNCRC apply equally and without exception to disabled children Rights are not to applied in isolation from each other, but are indivisible and interrelated The UNCRC provides an anchor to ensure that not only the vision but also the practice of inclusion is firmly based on social justice and human rights.
References
Bond, T, with Nguyen, T.H. (1998) The Alternative Basic Education Programme supported by UNICEF: an Assessment. UNICEF: Hanoi, Viet Nam.
Chalker, Prue (1998) Evaluation report of the Ho Chi Minh City Disability Programme. Save the Children/UK: Ho Chi Minh City, Viet Nam.
Disabled Peoples' International (1998) Human Rights Network. A Report of a Project 1997/98. DPI - EU Committee: London.
EENET (1998a) 'Focusing on community support for inclusive education', Enabling Education, No 2. Manchester University: UK.
Haile, G. & Bogale, T. (1999) From exclusion to inclusion: a case of children with mental retardation in Kokebe Tsebah Primary School in Addis Ababa (Ethiopia). Save the Children/ Sweden, Eastern and Central Africa Office, Ethiopia.
Human Rights Watch (1998) Children abandoned to the Russian state: cruelty and neglect in Russian orphanages. Human Rights Watch Children's Division: New York.
Lesotho Society for Mentally Handicapped Persons (1999) Memo.
Rutter, S. & Seyman, S. (1999) He'll never join the army. Down's Syndrome Association: London. http://www.downs-syndrome.org.uk
Save the Children/UK (1999) "Do not look down on us". Children's voices from informal settlements in Zimbabwe. SC/UK: Harare, Zimbabwe.
UNICEF (1999) Human Rights for Children and Women: how UNICEF helps make them a reality. UNICEF: New York.
Watson, N, Shakespeare, T, Cunningham-Burley, S, Barnes, C, Corker, M, Davis, J, Priestley, M (2000) Life as a Disabled Child: a qualitative study of young people's experiences and perspectives. Leeds and Edinburgh, University of Leeds/University of Edinburgh.
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