Children with Disablity

Summary: At its 16th session (22 September -
10 October 1997) the Committee on
the Rights of the Child devoted a Day
of General Discussion (6 October
1997) to the theme "The Rights of
Children with Disabilities". This is the
submission made by the to the
committee.

"My life changed completely when I had a son with a disability I needed to take care of him almost all the time and could not work. I was forced to sell almost everything I owned so that the children and I could get food" Genet Ademu speaks quickly and with deep feeling. For a moment she forgets to hold her hand before her mouth, which shy and withdrawn Ethiopian women often do when they speak. Her home is a little windowless clay hut comprising about ten square metres. It is located in a narrow lane in Ethiopia's capital city, Addis Ababa. The door is open to let light in. Inside in the little room there is a bed, a wooden bench and a cupboard. Four- year old Masrescha, who suffers from cerebral palsy and is blind, lies on the bed. Genet Ademu maintains herself by baking and selling bread and also by washing for wealthier families. When she is away her oldest son takes care of his brother. She does not have any contact with Masrescha's father. However, it was not only her economy that was affected when she had a son with a disability. Her relations with the neighbours also deteriorated: "They said that his disability was God's curse. Or it was a result of a traditional medicine-man deciding to punish me for something I had done. They also said Maraecha's illness is contagious so I never take him out of here" Instead a social worker from the Ethiopian organisation for disabled people HPD-O, who comes to train Masrescha a couple of times a week, takes him for a short walk in the lane. Some people passing by look, but say nothing. When the son was new-born, Genet believed that the neighbours were right. Consequently, she went to a medicine- man to have the curse lifted: "But / don't think like this any more. After living with my boy for four years I have completely changed my attitude. / have also learned a lot from the social workers and other mothers with disa The greatest problem - attitudes There are many different attitudes and myths about children with disability. These views differ between various societies and cultures. Disabilities often reveal the inadequate knowledge and lack of tolerance by other people. They often cause irritation, and sometimes even guilt and shame. Negative attitudes contribute towards children being exposed to abuse and discrimination. Children are kept at home and have neither the opportunity of playing with others nor of attending schools. Consequently, it is not possible for them to develop their skills and talents. If they are out of sight it can never be seen whether they are exposed to neglect or abuse. As a result they are more vulnerable than they need to be. Often the negative attitude of the neighbouring community is an even greater problem than the impairment itself for the disabled person. It is therefore important to ensure that children with disability are visible, to increase knowledge about different kinds of impairments and try to influence the attitudes of people. This applies, not least, in Sweden. At a seminar in Lithuania, to which Radda Barnen had invited organisations for the disabled from Eastern and Central Europe, one participant concluded: "It is good to see that everything is not perfect in Sweden. We can actually teach you something too." . HPD-O, one of the organisations tar disabled people with which Radda Barnen collaborates in Ethiopia, organises meetings in the places of traditional associations and assembly premises in various parts of Addis Ababa. At these meetings local people are invited to a theatre presentation and to music which deals with the situation of people with disability. HPD-O also tries to inspire the interest of secondary and high school students in disability issues, Some students attend courses and learn more about the situation of people with disability. The intention is that they should then disseminate this knowledge to their classmates, families and neighbours and thereby contribute to altering their attitudes, A parents association is also being formed where relatives of children with disability will be able to receive support and assistance from each other. Not the same view in all cultures Radda Barnen speaks about "disability" in order to emphasise that the limitations that afflict these children to a large extent depend upon their surroundings, not on the impairment. For example, a girl who cannot walk because she has had polio is impaired. The disability may be that she cannot start school as it is located to far away or because the teacher believes that she has a contagious illness. Disability is a broad concept. It may be visible or invisible, physical or mental. Impairments can vary in severity. They can include anything from a slight hearing impairment, which only requires minor attention by surrounding people, to severe injuries whereby the person requires assistance from surrounding people with almost everything. In some cases the impairment is genetic, in other cases not. The causes may be inherited, but they can also result from illness, accident, trauma or poor diet. The proportion of children with disability in developing countries is greater than in rich countries. One cause is that there are more illnesses resulting in disability. Another is the lack of qualified health care for the poor. The total proportion of people with disability is, however, greater in the industrialised countries, as people live longer there, and the proportion is greatest among the elderly. According to various investigations, approximately seven per cent of children in developing countries have some kind of disability - four per cent moderate/severe disabilities and three per cent minor. The entire Convention applies People with disability belong to the most vulnerable groups. Politicians and other decision-makers often do not take into account their needs and rights. As they are few and do not have any strong organisations that can represent their interests, they are often severely affected by financial cut-backs. In the UN Convention on the Rights of the Child, which was adopted in 1989, there is an article that particularly deals with the rights of children with physical or mental disability. It states ~'. . .that a mentally or physically disabled child should enjoy a full and decent life, in conditions which ensure dignity, promote self-reliance, and facilitate the child's active participation in the community". However, this article does not mean that the other articles of the Convention on the Rights of the Child do not apply to children with disability. On the contrary, all articles referring to "the child" apply to all children, thus also for those that have some kind of disability. In 1993, the UN General Assembly adopted international rules to reinforce the rights of disabled persons. These Standard Rules lay down rights and responsibilities and provide proposals on how governments can create a society that is adequate for everyone. The rules are primarily directed at adults, but children are mentioned in several of the articles. For example, children with disability shall have equal opportunities to education. The Standard Rules are not binding but should be seen as a moral duty for all countries of the world. Money is not the most important Radda Barnen prefers to say "children with disability" than "disabled children". This may appear to be a play on words. But it involves an emphasis that the child and his or her needs are the primary consideration, not the impai rment. When one works with children with disability, it is a challenge to do so without directing all attention to the disability. A child that cannot see is first and foremost a child, not a blind child. As all other children, those that have some kind of disability require love and care. They want to play and to be respected - exactly like all other children. Certain children have a need of special treatment and various kinds of aids, for example, wheelchairs and hearing aids. But it is important to retain a holistic view where the child - not the disability - is at the centre. Particularly in western countries, children with special difficulties are at risk of becoming objects to be treated by all kinds of specialists: physicians, physiotherapists, occupational therapists, and so on. The real needs and problems of the child may then be ignored. It is therefore important to stimulate and encourage activities that children with disability can do, not only that which they have difficulty in. If a boy or girl cannot do certain things it is easy to draw the conclusion that he or she cannot do a number of other things either. This is often incorrect. Children are capable of more than we believe. For example, why should a boy who is deaf not be able to read and write or a girl who is blind not be able to learn to dance? It is by no means certain that special knowledge and extra resources are needed for a child with disability to be able to participate in the same activities as other children. Shortage of experts or money is never an acceptable excuse for excluding anyone. A lot can be achieved by an open attitude and knowledge of the needs that all children have. Even without access to specialists or resources, it is better for all children to participate in society than to be isolated. Additional risk Children with disability are at additional risk in the event of armed conflict and displacement. But, despite this, there is almost nothing written about boys and girls with disability in armed conflict and displacement situations. In books and reports dealing with how children are afflicted by armed conflict, children, with disability are seldom mentioned. Statistics on refugees and displaced persons are limited to reports of age and gender. for the most part disibility is not included. However, one exception is children injured by the anti-personal mines that were indiscriminately laid during a number of armed conflicts during the last decades. In countries such as Afghanistan, Angola, Mozambique and Cambodia, thousands of boys and girls have been maimed when they stepped on mines, They receive relatively great attention compared with other children with disability. Studies also show that the risk of children with disability being vulnerable to sexual abuse is three times as great than for other children and that only a small proportion of abuses are reported. Inclusive education Radda Barnen works to ensure that boys and girls with disability are included in all activities in society. An important component of this strategy is the right of the child to education. Ethiopia is one of the countries where Radda Barnen works to ensure that :hildren with disability can attend school: In a house besides one of the crowded streets near the centre of Addis Ababa, four-year old Tadesech is learning sign language. A social worker from the organisation for the disabled HPD-O illustrates the various signs and points out what they mean in a textbook. Tadesech eagerly imitates the signs. Her sister who is sitting besides her, is also learning sign language so that they will be able to speak with each other. The family's house consists of one room and kitchen, yet gives the impression ot being large. This is the result of the original wall having been knocked down so that the dwelling opens onto a workshop where three weaving machines rattle away. Tadesech's father, Aben, together with a couple of employees, work there weaving thin cotton. Aben Eshetu also has a nine-year old son who cannot hear: "Even though he is deaf I realised that he was capable of learning a lot when he accompanied his elder brother one day to the pre-school. The teacher said that he did not have any problems there." Aben then found out that there was a school with classes for deaf children some kilometres from the tamily's home. He also joined an organisation for deaf people which arranges courses in sign language that his son could attend. Then his soon started at school. "Our financial position was better then", says Aben and glances at the workshop. "Unemployment is greater now. For example, many soldiers have returned from the war and do not have any work so they tiy to maintain themselves by weaving. Competition has increased and sales have slumped. Consequently, I cannot afford to pay the membership fee for the organisation for the deaf." But thanks to HPD-O, his daughter also receives lessons in sign language a couple of times a week. "My son likes to attend school. Thus, I also want Tadesech to have that opportunity", says Aben returning to the weaving machine. In another quarter of Addis Ababa, Radda Barnen supports a project for the inclusion of boys and girls with mental disability. These children attend ordinary classes half-time and special classes for the other half. Of the eleven children that have participated in the project so far, there is only one that has had such great difficulties that he had to return to a special class. "But there are several problems ", says Amsale Worku, who is a teacher for children with mental disability. "Children don't receive the support that they need as teachers are not patient enough. Teachers can't cope with helping everyone as classes are so large, 80-90 pupils. And the at her pupils are mean towards children with disability." However, a school with almost one hundred students in each class, is not particularly child friendly in any event. Many children - with or without disability - may find it difficult to gain anything from education provided under such circumstances. Consequently, the issue is alteration of the entire educational system; improving teaching, and providing schools with greater resources. In the long term, the goal is that schools should be better for all children. In many countries Radda Barnen therefore supports teacher training, the preparation of new curricula and putting pressure on governments to allocate more money. In order to achieve improvements in the short term, Radda Barnen is also trying to change the attitude of teachers, For example, in Vietnam seminars are held where teachers can discuss disability issues, Following this it has been shown that teachers are less negative to the idea of permitting children with disability to attend their classes. Furthermore, teachers influence students so that they will also have a more tolerant attitude. These deafgirls in Yemen have tbr the first time got an opportunity to attend school. However, the school has inadequate resources. Therefore, handicrafts produced by students are sold in order to contribute to material and transport. Radda Barnen's work Radda Barnen's work for children with disability aims at achieving a change in attitudes, which will in its turn lead to children being included and allowed to fully participate in the life of the community. Sweden has achieved a lot as regards laws and rights for people with disability. But there are still many issues left to learn and discuss. Consequently, Radda Barnen works to ensure that attention is given to these issues, for example in conjunction with seminars directed at teachers and staff working with rehabilitation, During 1998. a telephone help-line will be opened for children with disability in Sweden. The intention is that children and young people will be able to phone anonymously to speak with persons that have disabilities themselves concerning everyday problems related to their disability. In many countries it is usual that children with disability "are kept" at institutions. But there are also relatively newly formed parent associations working to improve conditions for the children. Radda Barnen supports several such associations. One of them is ASCHF-R in Romania, which amongst other things arranges summer camps for young people and their families by the Black Sea. There the young people have an opportunity of associating with others in the same situation. Young people from Sweden and their parents also participate. Parent associations and other organisations for the disabled in, among other places, South Africa, Guinea-Bissau and Yemen also receive support. One means of disseminating experiences and increasing awareness is to arrange meetings and conferences. Regional seminars with the theme "Myths and facts about children with disability" have been arranged in Belarus and in Lithuania and continue annually in various countries in Eastern and Central Europe. In Central America, Pakistan and Guinea-Bissau, seminars with Radda Barnen's local partner organisations have been arranged to discuss how children with disability should be included in all activities operated by the organisations, for example, with working children or refugee children. Every year Radda Barnen arranges a round-table conference in Brussels with participants from both Eastern and Western Europe. The objective is to promote the inclusion of children with disability. In co-operation with other members in the international Save the Children Alliance, Radda Barnen also works to influence international organisations to afford attention to the rights of children with disability. One example of lobbying at national level is that organisations for disabled people in Bangladesh have jointly prepared a proposal for legislation on the rights of people with disability. With the support of Radda Barnen, the organisations are attempting to persuade the Bangladeshi Government to adopt the proposal. Governments and NGOs in countries that have ratified the Convention on the Rights of the Child must regularly report to the UN on the advances made. A review of a number of such reports, which Radda Barnen commissioned, shows that reports on the situation of children with disability leave a lot to be desired. Individual measures are described but there is seldom any comprehensive report given of what the countries have done. Radda Barnen uses investigations of this kind to influence partner organisations, politicians and other important parties. In South America and West Africa this has resulted in child rights organisations starting to pay attention to the situation of children with disability when reporting to the UN. In several developing countries, Radda Barnen supports community based rehabilitation. This method is based on training those in the immediate surroundings of the child, for example the family and teachers, in order to assist the child to develop according to his or her own preconditions. Rehabilitation is not merely viewed as a medical process. It is just as much an educational and attitudinal issue. It may be those surrounding the child rather than the child itself that need to change. R~dda Barnen tries to avoid work with community based rehabilitation resulting in the formation of separate organisations and structures for disability issues. It is preferable if the local NGOs already existing pay attention to issues concerning disability and use their own networks and contacts to solve different problems, for example, need of rehabilitation or medicines. Art. Ar. 597 Radda Bamen makes efforts to ensure that children with disability are able to fully participate in the life of the community. I "My life has changed completely. Before I just sat at home. I didn't do anything. And I was always sad. Now I can read and write and have my own friends. I know that my future is bright. I dream about becoming a teacher." (Nadya, 1 7, in Yemen. She is deaf and was 15 years old before she was allowed to start school) "Of course the authorities think it is good that we accept children with disability in our classes. But we don't receive any extra payment for all the extra work. We have received a couple of weeks'training, but that is not enough. And when we have problems with a child, we do not receive any help." (The junior-level teachers Dung and Voi who work with inclusive education in Vietnam) "For over 40 years people in need have been kept in hiding at home or sent away. The State has ignored our children. We can't wait until the Government does something. The initiative must come from us." (Ludmila, chairperson of a parents' association in Belarus)