1
A Report on the Lives of Disabled Children
For the UN General Assembly Special Session on Children
New York, September 2001.
Published on behalf of Rights for Disabled Children by Disability Awareness in Action
Written by Gerison Lansdown
An 11 year old girl with Down's Syndrome was playing with a little boy on the beach.
"Are you disabled?" he asked. "No, I'm Daisy," she replied and they went on playing.
"Everybody's got something different about them, and some things are just more different than others. But we're all ­ I don't know ­ different in different ways."
The aims of the working group are to highlight the abuses and neglect of rights experienced by all disabled children and compile and disseminate good practice in challenging those abuses. Its aims for disabled children are to promote an environment in which their rights are fully respected and in which they are included and valued on an equal basis with non-disabled children.
We have a dream of a time when the birth of a disabled child is greeted with as much joy and hope for the future as is given to a non-disabled child and that the unique experience of each disabled child is recognised as an exceptional gift to the dignity and humanity of us all.
Acknowledgments
We would like to give our particular thanks to David Werner and Healthwrights for use of drawings from Disabled Village Children and Nothing About Us Without Us.
To the Young Disabled Peoples' Project in Chester for their "Young Disabled People
Do Too!" postcard.
To Chris Clode for the use of quotations from his research Guarding The Gateposts:
Admission Policy In HE, to Micheline Mason and Richard Reiser for use of the page on
"Nasty" from their publication Disability Equality In The Classroom: A Human Rights
Issue.
To Annie MacDonald for her insight into her experience in an institution in Annie's
Coming Out (Penguin, 1980) and to David Hevey for use of his photo "Boy with the
World".
We dedicate this report to the many disabled children whose voices are heard

2 throughout these pages. It is only disabled children's quotations that we used, voices collected from letters sent to us from around the world and other material in our archives. We offer this report in solidarity with your experience and the determination that you will be listened to and your rights upheld.
Throughout this document, when we refer to 'disabled children' we include all children with sensory, physical and intellectual impairments or who have mental health difficulties ­ regardless of age or gender.
++++++++++++++++++++
When we refer to 'inclusion' we mean the participation of disabled children through the provision of fully accessible information, environments and support. This can include the provision of barrier-free environments, information in alternate media such as braille or on tape, acknowledgement of sign as a language and the provision of personal assistant support and interpretation.
++++++++++++++++++++
Throughout this document, when we refer to 'disabled children' we include all children with sensory, physical and intellectual impairments or who have mental health difficulties ­ regardless of age or gender.
When we refer to 'inclusion' we mean the participation of disabled children through the provision of fully accessible information, environments and support. This can include the provision of barrier-free environments, information in alternate media such as braille or on tape, acknowledgement of sign as a language and the provision of personal assistant support and interpretation.

CONTENTS
INTRODUCTION
10 POINT ACTION PLAN
THE FACTS ABOUT DISABLED CHILDREN
 Definition of disability
 Incidence of disability amongst disabled children
 Causes of impairment in children
 Major factors causing disabling impairments
THE RIGHTS OF DISABLED CHILDREN
 Overview of international developments
 UN Convention on the Rights of the Child
 Progress in implementing the rights of disabled children
 Limitations of international protection of the rights of disabled children
VIOLATIONS OF THE RIGHTS OF DISABLED CHILDREN
 The right to freedom from discrimination
 The right to life
 The right to an adequate standard of living
 The right to protection from all forms of violence
 The right to an education on the basis of equality of opportunity
 The right to participate and social inclusion
 The right to family life
POSITIVE ACTION TO PROMOTE THE RIGHTS OF DISABLED CHILDREN
 Listening to children and empowering them to protect their own rights
 Supporting parents to promote disabled children's rights
 Challenging poverty 48
 Promoting inclusive education
 Promoting social inclusion
 Challenging prejudice and promoting positive attitudes
 Respecting cultural rights
 Promoting the right to play, recreation and culture
 Implementing structures and policies to respect the right of disabled
children
Appendix I
Appendix II
Appendix III
Bibliography
3

4


"I can see a blackbird that flies through life's door. A bird that shows its golden wings for me. It comes from a freedom that is open, with unlocked doors. The bird is released from my hand like a freedom without wounds."
"Young people are always supposed to listen to adults, we are seldom taken seriously. We are the ones who have to go through school, we are the ones who will have to deal with conflict when we are adult. We want to try our ideas and practice ways of resolving conflicts. We want to make friends in our own way. We have to do that if we are going to learn about how to relate to each other. We want help from adults but on our terms. I think that all young people need things to change, not just disabled kids."
INTRODUCTION
As many as 150 million children, throughout the world, are disabled. What does this mean? It means that they cease to be valued as equal to other children. It means that they are widely disregarded as both capable of, and needing, love, affection, humour, friendship, cultural and artistic expression and intellectual stimulus. It means that they are segregated, marginalised and isolated. It means that they can be subjected to physical and sexual violence with relative impunity. It means that they are defined by what they lack rather than what they have. It means that their talents, beauty, vigour and love are ignored. The cumulative impact is to deny disabled children respect for their dignity, their individuality, even their right to life itself. The process dehumanises children. But it also dehumanises society. No society can lay claim to civilisation, humanity and justice when it continues to subject a significant minority of its people to such abuse and neglect.
The causes of the rejection of disabled people lie deep in the social, economic, cultural and psychological roots of all cultures ­ dislike of or hostility to difference, belief that disabilities derive from curses or punishments, guilt, fear of
'contamination', reluctance to accept the responsibility for caring. Discrimination against disabled children has existed in every community throughout history. But it is not inevitable. And the 21st century provides an unprecedented opportunity to bring about change.
OPPORTUNITIES
There is international recognition, evidenced by the near universal ratification of the UN Convention on the Rights of the Child, that all children, including disabled children, are subjects of rights and that governments have explicit and detailed obligations to protect, promote and fulfil those rights.
There is now a significant body of evidence not only of the equal capacity of disabled children to acquire skills and competencies alongside non-disabled children,

5



 but also of the economic and social benefits of creating such opportunities.
Modern communication technologies, even in the poorest countries, create opportunities to disseminate accurate information, challenge ignorance and prejudice and provide positive role models of and for disabled children.
Technical knowledge also exists through which to provide facilities to enhance mobility, communication, physical access and educational opportunities for disabled children.
The demand by disabled people for recognition that, whilst an individual has an impairment, it is the social, cultural and physical environment in which she or he lives which is disabling, is gradually gaining acceptance ­ changes to society not the individual are needed.
Finally, disability is slowly being recognised as a human rights issue, not welfare.
Disabled adults and children are not victims to be protected, or inferior beings to be shut away and avoided, but are people with equal rights, equal responsibilities and an equal contribution to make to society.
These opportunities must now be grasped in order to effect real change. As this report documents, the scale of discrimination and abuse of human rights perpetrated against disabled children remains intolerable. Too often we continue to see the impairment not the child: and in so doing fail to extend the empathy that should exist towards another human being. That lack of empathy creates the context in which it is possible to violate the rights of disabled children, in much the same way as it has allowed the persecution of other minorities throughout history. The challenge is to establish the political and legal frameworks, backed up by practical action that demand and achieve equal rights and equal opportunities for all disabled children. There is a huge distance to go.
"Sometimes the biggest challenge is just to change attitudes, not just of schools but of friends and families. If I was talking to a young disabled girl today, I would tell her not to let obstacles stand in her way."
10 POINT ACTION PLAN
Promoting the rights of disabled children
 END DISCRIMINATION Introduce non-discrimination legislation with an explicit reference to disability as a ground for protection against discrimination.
 ENSURE EQUAL RIGHTS TO EDUCATION Spell out in education legislation that the right to education for all children includes all disabled as well as non-disabled children.
 PROMOTE INCLUSION Establish clear goals and time-scales for moving towards

6 inclusive education for all children.
 MAKE DISABLED CHILDREN VISIBLE Provide data to ensure that disabled children are made visible in statistics relating to, for example, poverty, abuse, education, institutional care.
 EXPOSE AND CHALLENGE NEGLECT AND ABUSE Undertake surveys and research into the experiences of disabled children to expose and highlight abuses of their rights and enable them to contribute towards the development of policies to bring these abuses to an end.
 CHALLENGE PREJUDICE AND IGNORANCE Promote public education campaigns to overcome prejudices, misconceptions and lack of understanding of the nature and implications of disability and to promote respect for the equal rights of disabled children.
 ESTABLISH CHILDREN'S RIGHT COMMISSIONERS OR OMBUDSPERSONS
FOR CHILDREN Introduce statutory, independent bodies to monitor, promote and protect the rights of all children, including disabled children.
 END VIOLENCE AGAINST CHILDREN Introduce legislation to end all forms of violence against children in families, schools, and all other institutions in which children live, backed up by campaigns of zero tolerance of violence against children and introduce mechanisms through which children can challenge violence and abuse to which they are exposed.
 PROMOTE PARTICIPATION Introduce legislation to provide children ( as individuals and as a group) with the right to participate in decisions which affect them in families, in schools and in local and national government and ensure that in all consultation mechanisms, disabled children are fully and effectively represented.
 REMOVE DISABLING BARRIERS Undertake analysis, in collaboration with disabled adults and children and their organisations, of the physical, cultural, social and economic barriers which impede the inclusion of disabled children and develop a
10 year strategy to create an inclusive environment which facilitates respect for all the rights of disabled children.

7
THE FACTS ABOUT DISABLED CHILDREN
Definition of disability
As confirmed by the WHO in their revision of the ICIDH to the International
Classification of Functioning, Disability and Health (ICF), the term 'disability' represents the outcome of the interaction between impairments and the negative environmental impacts. Disabled people increasingly use the term 'impairment' to refer to individual functional limitations, disease or chronic illness whether physical, intellectual, sensory or hidden. Disability is a social construct not a description of a medical condition. It recognises that the way societies are constructed, both through the characteristics of its built environment and the prevailing attitudes and assumptions, will result in restricted opportunities for disabled people to participate on the basis of equality of opportunity. Adults and children are 'disabled' by prejudice and stigma, direct or indirect discrimination and a failure of society to adapt and accommodate their needs. The principle significance of this social and interactive model of disability is that it challenges the traditional view that the 'problem' lies with the individual and instead insists that it is the social environment and culture which must change to include and provide support for the individually impaired person.
Incidence of disability amongst children
It is difficult to gather accurate data on the incidence of disability amongst children.
Countries have used different definitions of both impairment and disability, the quality of statistical data varies widely and too little research has been done on the lives of disabled children.
The final report prepared by the Special Rapporteur on Human Rights and Disability in 1991 noted that "In the majority of countries, at least 1 out of 10 persons has a physical, mental or sensory impairment, and at least 25 per cent of the entire
population are adversely affected by the presence of disabilities" (Despuoy, 1991).
And, according to UN estimates, there are 500 million disabled people worldwide:
Of these 500 million, UNICEF estimate that 120 million are children. Others place the estimate nearer 150 million (Roeher Institute 2000). In developing countries approximately 50% become disabled in the first 15 years of life. There are some countries where 90% of disabled children do not survive beyond the age of 20 and
90% of intellectually impaired children do not survive beyond the age of five years
(Disability Awareness in Action, 1995).
The past decade has been witness to many developments which have contributed to the incidence of disability ­ landmines, HIV/AIDS, increasing poverty in many

8 developing countries, environmental pollution and drug abuse. These trends are running counter to the progress being made in other fields to eliminate major causes of impairment such as poliomyelitis, measles and lack of access to safe water.
Causes of impairment amongst children
A significant number of the impairments, and consequent disability, experienced by children are directly caused by preventable factors. A report prepared for the World
Summit on Social Development suggests that major causative factors of disability include:
 Malnutrition (100 million, 20 per cent of all disabled people);
 Accidents/trauma/war (78 million, 15.6 per cent);
 Infectious diseases (56 million, 11.2 per cent);
 Non-infectious diseases (100 million, 20 per cent);
 Congenital diseases (100 million, 20 per cent).
However, the reality is more complex. Some congenital conditions are linked to malnutrition, which is preventable and fundamentally related to poverty and bad birth practices. Many infectious and non-infectious diseases are caused by povertyrelated factors such as the drinking of polluted water (DAA, 1995).
The final report of the Special Rapporteur on Human Rights and Disability lists the following causes derived from governmental and non-governmental sources, most, but not all of which, are causes of disability in childhood: "heredity, birth defects, lack of care during pregnancy and childbirth because of lack of coverage or ignorance, insalubrious housing, natural disasters, illiteracy and the resulting lack of information on available health services, poor sanitation and hygiene, congenital diseases, malnutrition, traffic accidents, work-related accidents and illnesses, sports accidents, the so-called diseases of 'civilization' (cardiovascular disease, mental and nervous disorders, the use of certain chemicals, change of diet and lifestyle, etc.), marriage between close relatives, accidents in the home, respiratory diseases, metabolic diseases (diabetes, kidney failure, etc.), drugs, alcohol, smoking, high
blood pressure, old age, Chagas' disease, poliomyelitis, measles' .
Non-governmental sources also place particular emphasis on factors related to the environment, air and water pollution, scientific experiments conducted without the informed consent of the victims, terrorist violence, wars, intentional physical mutilations carried out by the authorities and other attacks on the physical and mental integrity of persons, as well as violations of human rights and humanitarian law in general (Despuoy, 1991).

9
MAJOR FACTORS CAUSING DISABLING IMPAIRMENTS
It is worth highlighting in more detail some of the major factors
Poverty The relationship between disability and poverty has been clearly established. Not only is the risk of impairment much greater for poor people ­ from malnutrition, iodine deficiency, poor sanitation and so on ­ but the reverse is also true. The birth of a child with an impairment, or subsequent impairment, will place heavy demands on families, often driving them into poverty. The combined effect of these factors mean that disabled people are disproportionately represented amongst the poorest strata of society (World Programme of Action, 1983).
"After I got polio my mother refused to feed me but I managed to keep me alive by scavenging for food and stealing from my brothers. I never went to school but taught
myself, with a neighbour's help to read and write."
"8 year old Bintu Koroma describes the day rebels came to her house in Sierra Leone and demanded money which her mother did not have. "They led us to the cotton tree, where we sat together with others who had been captured. I was the first one they called. They grabbed my left hand, put it on the root of the tree and chopped it
off. I was four years old."
Armed conflict is a major and probably increasing cause of disability among children in many countries because of the targeting of civilians and the use of modern weapons, including, in particular, landmines. The Graca Machel study on the
Impact of Armed Conflict on Children states that millions of children are killed by armed conflicts, "but three times as many are seriously injured or permanently
disabled by it" (Machel, 1996).
According to WHO, armed conflict and political violence are the leading causes of injury, impairment and disability and primarily responsible for the conditions of over
4 million children who currently live with disability. In Afghanistan alone, some
100,000 children are disabled by war, many their impairments caused landmines.
The lack of basic services and the destruction of health facilities during armed conflict mean that disabled children get little support. Furthermore, millions of children suffer psychological trauma caused by exposure to or involvement in armed conflict.
Such conflicts are often accompanied by a reduction or breakdown of basic health and other services. Thus the Special Rapporteur on Human Rights and Disability reports that, "in the armed conflicts in Angola and Mozambique, for example, less than 10 to 20 per cent of the children received inexpensive prosthetic devices. In
Nicaragua and El Salvador, only 20 per cent of children in need were provided with
the necessary services." (Despuoy 1991)

10
"I was in the bush fetching firewood with my younger sister. When I was preparing to cut the wood my sister pulled the wood and the landmine exploded, injured and deformed my face and made me become totally blind. My sister was also injured. My mother took me to the hospital. I was in the Intensive Care Unit for six months.
When I recovered from the shock and the pain I was re-admitted in the hospital.
When I was finally discharged from the hospital, I went to the city of Matoka to seek for assistance and I was referred back to my home-town without any help. My life
changed and the situation got worse because of lack of assistance."
Child work Many millions of children are working in conditions that are extremely damaging to their physical, intellectual and emotional health and development ­ girls working in brothels, children exposed to harmful pesticide sprays, chemicals and dangerous machinery, girls in domestic service often working seven days a week and subjected to beatings and sexual abuse. The ILO estimate that as many as 250 million children are working. Their youth and comparative vulnerability renders them more susceptible to various work-related injuries and illnesses than adults doing the same kind of work. Also because they are not yet matured mentally, they are less aware of the potential risks involved in their specific occupations or at the workplace itself.
A recent survey undertaken by the ILO on child labour found that a large number of working children are affected by a variety of hazards ­ more than two-thirds (69%) of them in some countries (ILO,1998). Surveys at the national level have demonstrated that 5% to 20% plus suffer actual injuries or illnesses, many of whom stop working permanently. Injuries included punctures, broken or complete loss of body parts, burns and skin disease, eye and hearing impairment, respiratory and gastro-intestinal illnesses, fever, headaches from excessive heat in the fields or in factories. In absolute terms, more boys than girls are affected by injuries and illnesses mainly because of the total number of working boys ­ the ratio is almost three working boys to two girls. However, in certain specific economic activities or occupations, the incidence of injuries and illnesses is significantly higher for the working girls than for their working brothers.
Violence and abuse Millions of children are subjected to forms of violence, punishment, abuse and other practices that cause disability. These include beatings, forced sterilisations, deliberate maiming, castration and female genital mutilation.
WHO estimate that two million girls are at risk of female genital mutilation (FGM) every year and although many countries legislate against it, there is a widespread failure to intervene when the law is blatantly and grossly disregarded.
The Special Rapporteur also refers to physical and psychological ill-treatment of children, both within and outside of the family, as an "extremely serious cause of disability in both developed and developing countries. The harm that can be caused

11 in children by their parents or other persons beating, insulting, humiliating and maltreating them can be so great that in many cases it causes mental illness, social
maladjustment, difficulties in school or at work, sexual impairment, etc." (Despuoy,
1991)
"Dear beloved father, Congratulations on your birthday! Please show me if you love me. You are always busy when I meet you at home. You look unhappy. Why don't you go away for a rest? I have one thing to ask you: please don't hit me. Why don't you invite your colleagues for your birthday? Take care of your health. When you see my lonely face, just turn the light off and dream of me. To my beloved father from Ju
Jun."
HIV /AIDS HIV is infecting and affecting young people at an alarming rate. Around
600,000 children under 15 were infected with HIV in 2000 and the numbers of children living with HIV/AIDS is 1.4 million. Almost a third of all people living with the disease are between 15-24 years, some 10 million young people. To date the disease has spread with the most devastating impact in sub-Saharan Africa, where currently an estimated 21 million people are infected with HIV, 2.2 million of them children (Harper and Marcus, 2000). 500,000 children died of AIDs in 2000. The evidence shows that girls and young women are 50% more likely to contract HIV than boys and young men, partly because they are biologically more susceptible but also because in many societies they lack the power to negotiate safe sex. Ignorance and lack of information play a large part in the risk levels. In many countries where
Aids is an epidemic, nearly half the sexually active girls believe they face no risk of contracting the disease and in surveys in over 17 countries, over half the adolescents were unable to name a single method of protecting themselves (UNICEF, 2000).
Disabled children in developing countries are not likely to receive any information on
HIV/AIDs because they are not members of the schools to which information is sent nor is that information available in alternate formats.
A snapshot of the lives of disabled children
 There are up to 150 million disabled children globally and the numbers are rising
 Disabled children are disproportionately likely to live in poverty
 They are four times more likely to be neglected and physically abused and over three times more likely to be emotionally abused.
 The lives of disabled children are not treated as of equal value with others.
Parents and medical professionals who murder disabled children often have reduced sentences and use mercy killing defences
 In some countries 90% of disabled children will not survive beyond the age of
20
 Only 2% of disabled children across the developing world have access to

12 education
 Discrimination in relation to life saving treatments, to health care, to child care services and education is endemic
 Access to justice is routinely denied because they are not considered credible witnesses
"Waiting in the waiting room
Waiting for the dentist,
Waiting in the waiting room
Waiting for the nurse,
Waiting in the waiting room
Waiting for the doctor,
Waiting in the waiting room
Waiting for the worst."

13
THE RIGHTS OF DISABLED CHILDREN
Overview of international developments
International human rights law has been slow in recognising that disability is a human rights issue. Neither of the International Covenants, on civil and political rights and on economic, social and cultural rights, contain any express provision on the rights of disabled people nor explicit recognition of disability as a ground for protection against discrimination. However, both
Covenants, in their discrimination articles, include in their lists of grounds
'or other status' which clearly extends to discrimination in respect of disability. Furthermore, in its General Comment on disability, the Committee on Economic, Social and Cultural Rights has stated that 'since the
Covenant's provisions apply fully to all members of society, persons with disabilities are clearly entitled to the full range of rights recognised in the
Covenant' (CESCR, 1994).
GLOBAL DISABILITY RIGHTS
Some early developments within the UN gradually began to acknowledge the need to give a higher, explicit priority to addressing the rights of disabled people.
 In 1971 the UN General Assembly adopted the Declaration on the Rights of Mentally Retarded Person. The language now seems insulting, but the intent of this Declaration was to ensure that children and adults with intellectual impairments were properly recognised as members of society.
Up to that time, even in the developed world, children with intellectual impairments had no support for inclusion in mainstream life and did not even have access to any form of education.
 In 1975 the UN General Assembly adopted the Declaration on the Rights of Disabled People which asserts that all disabled people have the same civil and political rights as other human beings.
 1981 was designated as the International Year of Disabled Persons.
 1983 the World Programme of Action Concerning Disabled Persons was agreed by all member states and used to guide action during the UN
Decade of Disabled Persons (1983- 1992).
 In 1984 Leandro Despuoy, Special Rapporteur on Human Rights and
Disability was appointed and his report published in 1990.
 In 1993 the UN General Assembly agreed the UN Standard Rules on
Equalisation of Opportunities for Persons with Disabilities and set up a voluntary monitoring mechanism under the Special Rapporteur for
Disability, Bengt Lindqvist, with a Panel of Experts of representatives of the international disability organisations.

14
 In 1998 the UN General Assembly and the Commission on Human Rights recognised disability as a human rights issue and called on the Committee on Economic, Social and Cultural Rights to monitor governments' compliance with the obligation to ensure the fulfilment of rights by disabled people (Res. 98/31).
 Despite these latter injunctions, evidence to date indicates that governments have devoted very little attention to this issue in their reports to the Committee and most governments still lack effective measures to improve the situation of disabled people (CESCR, 1994). It is still the case that neither of the covenants are widely used to support disabled people's rights because of the traditional view of them as objects of welfare and service provision rather than subjects of rights (DAA,
1995). Disability continues to be a cause of discrimination and social exclusion.
DISABLED CHILDREN'S RIGHTS
"When you're younger ...you seem to think that that's the only life. But when you're older you see other people and you think that life could be better."
The situation has traditionally been compounded for disabled children who suffer a double jeopardy. Not only does the formal absence of disability from these human rights treaties render their lives and difficulties invisible, but even when action has been taken by the relevant international institutions to highlight the issue of disability, it has generally been taken from the perspective of adults not children.
And whilst some areas of discrimination, abuse and neglect of rights are common to both adults and children, the failure to give explicit attention to children's situation means that fundamental issues are neglected. The General Comment on disability does acknowledge the situation of disabled children specifically in relation to education and the right to special protection but its predominantly adult focus means that other important areas are neglected. For example, it argues that absence of social security and income support should not be an excuse for institutionalisation.
However, for children, the causes of institutionalisation may be different ­ lack of practical support for parents, rejection based on prejudice and ignorance, the presumption that it is in the child's best interests, none of which are dealt with in the
General Comment. Equally, issues, for example, of humiliating, degrading and violent punishment in institutions, the right to play and to participate in decisions that affect them are not covered.
During the 1990s, recognition of the rights of disabled children gathered momentum:
 The UN Convention on the Rights of the Child, adopted by the General
Assembly in 1989, came into force in 1990 and by the end of the decade had

15 been ratified by 191 states.
 Although most of the UN Standard Rules are relevant to disabled children, with some referring directly to them, the Special Rapporteur has observed that 'the child aspect and the gender perspective are vague in the text of the
Rules' (Lindqvist, 1996). The Rules are now in the process of revision to ensure greater focus on these issues.
 In 1997, the Economic and Social Council adopted a resolution on "Children with disabilities" which recognizes the need for special attention to be directed towards disabled children and their families or other caretakers. It requests the Special Rapporteur "to pay special attention to the situation of children with disabilities, to pursue close working relations with the Committee on the
Rights of the Child in its monitoring role with respect to the Convention on the
Rights of the Child, and to include in his report to the Commission for Social
Development at its thirty-eighth session his findings, views, observations and recommendations on children with disabilities". The resolution also urges
Governments to ensure, in accordance with rule 6 of the Standard Rules, that disabled children have equal access to education and that their education is an integral part of the educational system (Economic and Social Council,
1997).
 In 2000, the Commission on Human Rights adopted a general resolution on children which, amongst many other issues, reaffirms the obligations on states to ensure the rights of the child without discrimination of any kind and, accordingly, calls upon all states to adopt all necessary measures to protect the rights of disabled children, including non-discrimination legislation, support for families, and education which promotes the fullest possible social integration (Commission on Human Rights, 2000a).
 In the same year, a Human Rights Commission resolution on disability was passed which urges governments to implement the Standard Rules with particular regard to the needs of, amongst others, children (Commission on
Human Rights, 2000b).
 In summary then, progress has been made. Disability is now visible in the international human rights arena, due in large part to the effective and persistent lobbying undertaken by disabled peoples' organisations over the past decades. There is greater awareness of the abuses of rights of disabled people and the need for action to address them. More recently, the need to give specific attention to the rights and abuses disabled children has been understood. The first rung of the ladder has been reached.
"The owner of the local shop may have thought he was doing me a great service when he told the other customers to let me go first in the queue, but for me it was irritating to be treated as though I always need help."

16
UN Convention on the Rights of the Child
The status and scope of the Convention
The Convention provides a holistic framework of comprehensive and binding principles that should underpin the treatment of children throughout the world. Its significance cannot be overestimated. It provides a set of universal minimum standards of entitlement for all. It establishes children as subjects of rights and insists on recognition of children as actors in the exercise of their rights, and participants in all matters affecting them. It challenges the traditional perception and status of children as lesser than adults. It provides the tools with which to analyse the situation of children, the norms against which law, policy and practice must be measured and an international body for monitoring implementation. It insists on the equal rights of all children. Government's actions or inactions in respect of their children can now be scrutinised publicly within the international community.
All the Convention rights extend to all children under 18 years. However, it introduces specific rights for disabled children for the first time in international human rights law. Article 23, which addresses the situation of disabled children, states that:
 States Parties recognize that a mentally or physically disabled child should enjoy a full and decent life, in conditions that ensure dignity, promote selfreliance and facilitate the child's active participation in the community.
 States Parties recognize the right of the disabled child to special care and shall encourage and ensure the extension, subject to available resources, to the eligible child and those responsible for his or her care, of assistance for which application is made and which is appropriate to the child's condition and to the circumstances of the parents or others caring for the child.
 Recognizing the special needs of a disabled child, assistance extended in accordance with paragraph 2 of the present article shall be provided free of charge, whenever possible, taking into account the financial resources of the parents or others caring for the child, and shall be designed to ensure that the disabled child has effective access to and receives education, training, health care services, rehabilitation services, preparation for employment and recreation opportunities in a manner conducive to the child's achieving the fullest possible social integration and individual development, including his or her cultural and spiritual development.
 States Parties shall promote, in the spirit of international cooperation, the exchange of appropriate information in the field of preventive health care and of medical, psychological and functional treatment of disabled children, including dissemination of and access to information concerning methods of

17 rehabilitation, education and vocational services, with the aim of enabling
States Parties to improve their capabilities and skills and to widen their experience in these areas. In this regard, particular account shall be taken of the needs of developing countries.
 In addition, Article 2, which deals with the right to non-discrimination, includes disability as a ground for protection against discrimination. In other words, the Convention recognises that disability is a human rights issue.
" ...at the moment I am not as independent as I would like to be and I obviously
need to get more independent if I'm going to have a life when I grow up".
" I find it difficult to get out, have a good time and disappear off."
However, the Convention, in its entirety, is relevant for the human rights of disabled children. In particular, the Committee on the Rights of the Child, the international body established to monitor states progress in implementing the Convention, has identified four general principles which need to be considered in the implementation of all other rights:
Four general principles of the Convention on the Rights of the Child which underpin all other rights
Article 2 ­ all the rights in the Convention apply to all children without
discrimination, including on grounds of disability. This article not only requires governments to respect the equal rights of all children but also imposes active obligations on them to ensure that children are not discriminated against in the exercise of any of their rights. However, the principle of non-discrimination does not prohibit legitimate differentiation between children. Accordingly, it would be acceptable to offer additional educational assistance or facilities to a disabled child if this was needed in order to help them fulfill their potential. However, offering disabled children a different or lesser education simply because of their disability would constitute a breach of Article 2.
Article 3 - in all actions concerning children, their best interests must be a
primary consideration. This principle applies to actions affecting both individual children as well as children as a group. However, adults frequently make decisions and take action in respect of children, ostensibly in their best interests, but which are subsequently acknowledged to be demonstrably to the contrary ­ for example, placing disabled children in large institutions, subjecting them to painful surgery in attempts to make them more 'normal', failing to provide opportunities for education on the assumption that they were not competent. The Convention provides a framework of principles against which the child's best interests can be assessed. For example, segregated schooling, where disabled children's 'special' needs can be given proper attention, is often justified as being in their best interests. However, this claim needs to be subjected to a scrutiny of how segregated education serves to

18 protect the child's rights. For example, does it offer the same opportunities as those available to other children? Does it remove them from home and exclude them from family life, social networks and opportunities for friendship? Does it result in social exclusion and lack of participation? Does it expose them to stigma and prejudice?
Even if all these factors pertain, the best interests of the child are likely to be promoted not by removing the child but rather by addressing the problems within the school, all of which are amenable to resolution.
Article 6 - the right to life, survival and development. The right to life must be protected equally for all children. Article 6 requires that governments ensure 'to the maximum extent possible' the survival and development of children. This requires that disabled children, like non-disabled children, are provided with the support, resources and care necessary to promote the fulfilment of their potential and quality of life assumptions must not prejudice their chances of life, survival or development.
Article 12 - the right to be listened to and taken seriously. Article 12 provides that all children have the right to express their views on all matters of concern to them and to have those views taken seriously in accordance with their age and maturity. In other words, children are entitled as of right to be consulted when decisions that affect them are being made and must be recognised as active agents in their own lives. The right to be heard provides a powerful tool through which children themselves can challenge discrimination. Too often, it is the silence and invisibility of disabled children which contributes to the persistence of discrimination against them both as a group and as individuals. It is only through listening directly to the experiences of disabled children that adults gain awareness of the extent, nature and impact of discrimination on their lives.
Progress in implementing the rights of disabled children
The obligation to give explicit attention to the rights of disabled children has served to highlight the extent to which they are substantially neglected, and indeed, violated, by many countries throughout the world. In a report to the Commission on
Human Rights Sub Commission on Prevention of Discrimination and Protection of
Minorities in February 1996, the Committee on the Rights of the Child summarized the general concerns they had identified from its examination of States Parties' reports, taking account of the obligations associated with Article 23, the general principles of the Convention, and the obligation on governments to undertake all appropriate measures to implement its provisions. Its findings are not encouraging.
Findings of the Committee on the Rights of the Child in respect of disabled
children, 1996
"A first matter of concern is that some societies are not sufficiently sensitive to the needs and situation of disabled children, in the light of article 2 of the Convention.
The Committee is preoccupied by the widespread discriminatory attitudes towards

19 those children. Strategies and educational programmes, along with the adequate dissemination of information, should be undertaken to avoid certain prejudices which affect disabled children negatively...
"The Committee recognizes the prevalence of certain negative attitudes which hamper the implementation of the rights of disabled children with regard to article
23, such as isolation from the rest of society. The promotion of their rights should be further advanced through, for instance, support to parents' organizations and to community-based services and a sustained programme for moving children from institutions to a good family environment.
"The Committee is negatively impressed by the fact that some disabled children do not have adequate access to health and social care services and it expresses concern over the low number of disabled children enrolled in schools, which might reflect an insufficient attention to their specific needs. More protection should be offered them, including the possibility, through education, of integrating properly into society and participating actively in family life. Efforts for the early detection of the incidence of handicap should be made.
"Budgetary reductions have also affected disabled children who are particularly disadvantaged in their access to adequate health and educational facilities. The
Committee urges countries to take all the necessary steps to minimize the negative impact of the structural adjustment policies on the situation of disabled children. The
Committee recognizes, in the light of article 4, the priority of allocating the maximum extent of the available resources to protect these children.
"International assistance and the exchange of appropriate information will also be needed to address more effectively the challenge of improving the situation of
disabled children, in conformity with article 23, paragraph 4 of the Convention."
(Commission on Human Rights, 1996).
GENERAL DISCUSSION DAY
In 1997, in recognition of the need to gain a greater understanding of the situation of disabled children, the Committee on the Rights of the Child agreed to hold a Day of General Discussion on the rights of disabled children. This decision was taken in light of the Committee's recognition that disabled children were still widely denied access to education, family life, adequate health care, opportunities for play or for training and the right to participate in normal childhood activities, and that despite their experience of social exclusion which represented a denial of their basic rights
'their plight rarely figured high on the national or international agenda and they
tended to remain invisible' (Committee on the Rights of the Child, 1997 - See
Appendix 1 for the full recommendations of the General Discussion day).

20
Since the General Discussion Day, the Committee has focused more consistently on the situation of disabled children in its examination of States Parties' reports and drawn the attention of States to the Standard Rules. In addition, in its session in
January 1998, the Committee decided to participate in a working group to follow up the recommendations arising from the General Discussion held on 6 October 1997:
"...the Committee expressed its firm support for the establishment of a small independent informal working group with the participation of representatives from relevant United Nations Agencies and bodies and main disability organizations; the primary aim of the working group should be to bring together existing expertise and resources with a view to ensure a better protection of the right of children with disabilities. The Committee decided to be represented in the working group, which would regularly report to it. It also requested that progress on the mandate, membership and plan of action of the working group be presented to the Committee
at its next (eighteenth) session" (Committee on the Rights of the Child, Jan 1998).
"Let disabled people come out and fight for their rights. They have the right to survival, protection and to love. Disabled children are not given the opportunity to participate in play like normal hearing children. They are prevented from social events. Disabled children in South Africa were not taken care of. It is now that disability issues are taken seriously because parents have come together to empower themselves. The parents belonging to the organisation Disabled Children Action
Group, or DICAG, have worked very hard to act for disabled children."
"Disabled people throughout the world are standing up for their rights. Please do not stand in our way of leading a better life. We demand the recognition we deserve.
Don't pity us, become actively involved and support us!!!"
Limitations of international protection of the rights of disabled children
Despite these developments, the extent to which the rights of disabled children are monitored and addressed in the international arena is far from adequate.
1 Whilst it represented a considerable mark of progress to include a specific article in the Convention on the Rights of the Child on disabled children, the actual wording of the text limits its potential for achieving real change in their societal treatment. Para
2 of Article 23 states that disabled children are entitled to special care and para. 3 stresses that the special needs of a disabled child should be met by ensuring their
'effective access... to education, training, health care services, rehabilitation services, preparation for employment and recreational opportunities in a manner conducive to the child's receiving the fullest possible social integration and individual
development'. However, the needs of disabled children for education, shelter, protection, food and love are not 'special' but the same as those of other children.
Furthermore, the provisions of Article 23 are too limited to ensure the fulfilment and protection of disabled children's rights. By focusing exclusively on individualised

21 provision of 'special' needs, the text reaffirms traditional presumptions that the child is in some way 'deficient', and can only be helped by services to overcome the deficiency. In reality, many of the difficulties experienced by many disabled children are created by a disabling environment which denies them access to buildings, excludes them from public transport, fails to provide information in forms accessible to them, reinforces prejudice and discrimination and makes inappropriate assumptions about their competence and potential. Article 23 places no explicit obligation on the state to take all appropriate measures to create inclusive and enabling environments in which disabled children can participate fully and equally with other children.
2 In addition, Article 23 fails to reiterate that disabled children are entitled to protection of all their rights without discrimination of any kind. Of course Article 2, addressing non-discrimination, expressly applies to disabled children but without the principle being asserted within Article 23, it lends itself to an interpretation that in the delivery of services to disabled children, specialised or different standards apply.
For example, it is currently the case that many states provide segregated education for disabled children which offers fewer academic or vocational opportunities, or indeed, offers no education at all. It would be clearer that this constituted a breach of their rights if Article 23 stated explicitly that states should ensure that education provision was designed to be accessible and appropriate to enable the inclusion of disabled children, rather than that assistance to disabled children should be designed to promote their social integration and development.
"I'd like to play football outside the house but the others don't let me play with them.
They say that I'll hurt myself and often my parents agree. I'm even prevented from doing ordinary activities within the house that I know I can do. Once at a party in our house I was sure that I could manage to serve the drinks for the guests. But my
Aunt's daughter prevented me. She told me I was ill and that people like me couldn't
do things like that."
3 In its guidelines to states parties in producing their reports on implementation of the Convention, the Committee on the Rights of the Child has grouped the
Convention rights into clusters ­ for example those pertaining to civil rights and freedoms, to education, leisure and cultural activities and to family environment and alternative care. These clusters have served to help governments conceptualise the principles embodied in the Convention, but in respect of disabled children they have certain negative consequences. Article 23 is located within a cluster on basic health and welfare. This placing reaffirms again the welfare or medical model of disability.
The disabled child is a 'problem' needing special care and individual intervention rather than a person entitled to but denied equal respect and for whom social change is needed to overcome direct and indirect discrimination (Lansdown, 2000).
4 The Committee guidelines also only request information relating to the rights of

22


 disabled children under Article 23. Accordingly, the only issues raised are those covered within the text of the article. Thus, although the questions are reasonably extensive, covering access to education, to inclusion, to participation, to training of professionals, to freedom from discrimination, there are significant issues which are not raised with governments and on which governments therefore do not provide information. For example, despite a considerable body of evidence that disabled children are much more vulnerable to violence and abuse, governments are not specifically asked about measures that exist to ensure the protection of disabled children. In respect of the right to life, they are not asked to clarify whether the right to life of a disabled baby is protected with equal vigour to that of a non-disabled baby. Governments are not required to provide information on how the right to play for disabled children is protected and whether their opportunities for friendships, freedom of association and social inclusion are actively ensured. In practice this results in a focus on the impairment and how governments respond to the consequences of disability rather than on the child for whom the exercise of all rights is rendered more problematic as a consequence of their impairment and a disabling environment.
The scale and severity of human rights violations against disabled children continues, but they have not yet received the international attention they deserve. The Convention on the Rights of the Child has resulted in other significant areas of children's rights being brought to the attention of the world community. Since its adoption in 1989, issues such as sexual exploitation of children, child labour, children in armed conflict, violence against children have been widely acknowledged as human rights issues demanding action. However, to date, no comparable interest has focused on the experiences of disabled children. They remain largely invisible, hidden within families or institutions, and vulnerable to neglect of their economic,
social, cultural, civil and political rights.
VIOLATIONS OF THE RIGHTS OF DISABLED CHILDREN
It is a matter of international disgrace that many millions of children are denied the best possible health and are affected by disabling conditions which are entirely avoidable. It is an absolute disgrace that parents and guardians lack any proper form of support or services. It is an even greater disgrace that disabled children are then subjected to fundamental abuse and neglect of their rights. And a disabled child is disproportionately at risk from such abuse and neglect whether it is in respect of:
Social and economic rights -to an adequate standard of living, to play, to education or health care, and to support for parents in their upbringing
Protection rights - from physical and sexual abuse, discrimination or exploitation
Civil and political rights - to be listened to and taken seriously, to information, to privacy to respect for physical integrity.
The following sections outline the nature and scope of some the major human rights

23 violations faced by disabled children.
1 The right to freedom from discrimination ­ Article 2
Article 2 of the Convention on the Rights of the Child states that all the rights in the
Convention must be respected and ensured 'to each child within their jurisdiction without discrimination of any kind, irrespective of the child's or his or her parent's or legal guardian's race, colour, sex, language, religion, political or other opinion,
national, ethnic or social origin, property, disability, birth or other status'. In other words, governments are required to take active measures to tackle discrimination. In practice discrimination is perpetuated through four inter-linked processes, all of which need to be addressed by governments (ISCA, 2000).
Legislation
The Committee on the Rights of the Child has clearly indicated in both its guidelines to governments on reporting and in its scrutiny of government delegations that the principle of non-discrimination, including on grounds of disability, should be spelt out in national law. In addition, the Standard Rules provide detailed guidance on the importance of a legislative base for promoting the equal rights of disabled people backed up by effective sanctions for those who violate the principle of nondiscrimination. In other words, there is a need for explicit legislation to protect the rights of disabled children.
There is a long way to go before this goal is fulfiled. In a survey conducted by the
Special Rapporteur monitoring implementation of the Standard Rules, he found that in 27 of the 80 countries providing information, disabled people were not considered to be full-fledged citizens in a number of areas within the general legislation, including the right to vote, the right to property and the right to privacy. In 10 of the
80 countries the right to education is not guaranteed; in 17, the right to marriage is not guaranteed by law; in 16, rights to parenthood/family, access to courts of law, privacy and property are not guaranteed by law; and in 14 of the countries, disabled people have no political rights at all (Lindqvist,1996). Whilst many of these rights do not apply to children, they provide a clear illustration of the extent to which disabled people generally are discriminated against and denied equal recognition.
Without legislation which specifically prohibits discrimination against disabled people, it is likely both that it will go unrecognised and that it will be harder to challenge examples of discriminatory practice. Most countries include within their constitution a principle of non-discrimination. However, very often, the grounds listed for protection against discrimination do not include disability. (For example, of the nine government reports being considered at the pre-sessional meeting of the Committee on the Rights of the Child in January 2001, not one had disability as an explicit ground for protection in their non-discrimination or equal treatment legislation).

24
Not only can the absence of equal rights legislation lead to inadequate protection but in many countries, legislation itself can contribute to discrimination. It can do so directly by excluding disabled children ­ for example, they might be excluded from the right to education, or denied the right of access to mainstream schooling.
Legislation can also indirectly discriminate against particular groups of children, for example, where entry into examinations relies exclusively on the capacity to produce written work.
In its General Comment on Disability, the Committee on Economic, Social and
Cultural Rights states: "Despite some progress in terms of legislation over the past decade, the legal situation of persons with disabilities remains precarious. In order to remedy past and present discrimination, and to deter future discrimination, comprehensive anti-discrimination legislation in relation to disability would seem indispensable in virtually all States Parties. Such legislation should not only provide persons with disabilities with judicial remedies as far as possible and appropriate, but also provide for social-policy programmes which enable persons with disabilities to live an integrated, self-determined and independent life. Anti-discrimination measures should be based on the principle of equal rights for persons with disabilities and the non-disabled, which, in the words of the World Programme of
Action Concerning Disabled Persons, 'implies that the needs of each and every individual are of equal importance, that these needs must be made the basis for the planning of societies, and that all resources must be employed in such a way as to ensure, for every individual, equal opportunity for participation. Disability policies
should ensure the access of [persons with disabilities] to all community services..."
(CESCR, 1994).
Government neglect, inaction or persecution
Discrimination against disabled children is often the consequence of the failure of governments to act to protect their rights. Lack of adequate health care, lack of inclusive provision for play, lack of support for parents, lack of social security provision, lack of facilities to promote access can all lead to disabled children suffering discrimination in the exercise of their rights.
In many other cases, legislation exists to provide for equal treatment but is not effectively implemented. For example, the law might provide that all children have the right to education but the inadequate facilities, untrained teachers, inaccessible environments and lack of encouragement for children results in disabled children effectively being denied access.
Institutionalised discrimination
Much of the discrimination experienced by children takes place as a consequence of prejudices that are institutionalised, often unquestioned or even unrecognised throughout society. The hostility that lies behind discrimination derives from a

25 combination of inter-locking factors operating both through the institutions of the state and through the behaviours and attitudes of individuals and communities. It can have its origins in superstition or religious or cultural taboos ­ beliefs that a child's disability derives from a curse, or signifies a punishment. Attitudes learned in childhood and passed through generations can confer inferior status on disabled children ­ assumptions that disabled children lack the capacity to be educated, or that they are best cared for in institutions. These widespread prevailing attitudes, blinkered by prejudice, render the individual child invisible. The real child is reduced to a generalised stereotype that denies them their unique identity. This process results in wide-ranging discriminatory practices with devastating impact on the immediate lives and long-term outcomes for the children concerned. For example, in many countries, disabled children are believed to be a punishment from God, visited on the parents as a result of their sins. Many mothers blame themselves for their children's impairments and have little access to information on how to promote their children's development.
"Some people, like, call me like 'spastic', 'broken legs' and all sorts ...it isn't as bad at home is it, because they understand?"
The media
The Standard Rules emphasise that states should encourage the portrayal of positive images of disabled people and play a part in removing negative images. However, too often, the media can be a powerful tool in perpetuating discrimination. It can contribute to the reinforcement of hostility and foster contempt and even hatred towards disabled children. Very often, negative reinforcement occurs because disabled children are simply absent from the media, thus providing neither the children themselves with role models to aspire to or enhance their self-esteem, nor the wider population with positive images of their lives. Thus, the media serves to collude with and affirm the low value society attaches to disability. Sometimes, disability is the focus of humour that treats disabled people with contempt.
Alternatively, the representation of disabled children is as victims, as objects of pity or occasionally as brave survivors. Typically, an organisation in the Netherlands used young disabled people in a campaign to prevent accidents with fireworks. In so doing disabled people were portrayed as victims and losers in society with a clear message that to be like them was undesirable (DAA database).
"I don't like the way children like me are portrayed in newspapers and on television.
Most of the time we are presented as helpless, as if we never do anything for ourselves. Yes, we need help, but we don't need our dignity to be taken away at the same time."
2 The right to life ­ Article 6
Article 6 of the Convention protects the right to life and optimal survival and development. Taken in conjunction with Article 2, it clearly demands that the lives of disabled children are afforded equal protection with those of non-disabled children.

26
However, in reality it is the case that in many countries around the world, the lives of disabled children are not equally valued, even where constitutions and legislation lay claim to both equal rights for all people and protection of the right to life. Disabled children are commonly allowed to die, denied resuscitation or have treatment withheld. Parents of disabled children are put under unbearable pressure by cultural and religious beliefs that their child is the embodiment of sin and disgrace. Parents are also denied the normal social support and celebration that is given to nondisabled children. Systematic evidence of the violation of the right to life of disabled children is difficult to gather ­ data is not collected on the failure to protect the lives of such children. Rather, their deaths will be recorded as arising from their impairments rather than the disabling factors of medical neglect or inaction.
Evidence is, therefore, inevitably anecdotal. However, NGOs working in the field consistently document, not just examples of children whose lives have not been protected, but evidence that such judgements are informed by policies which consider severely disabled children as of insufficient value to justify pro-active intervention to protect life.
"To be imprisoned inside one's own body is dreadful. To be confined in an institution for the profoundly retarded does not crush you in the same way; it just removes all hope. I went to St Nicholas Hospital when I was three. The hospital was the state garbage bin. Very young children were taken into permanent care, regardless of their intelligence. If they were disfigured, distorted or disturbed, then the world should not have to see or acknowledge them. You knew you had failed to measure up to the
standard expected of babies. You were expected to die."
Professional attitudes towards the lives of disabled children
Certainly many doctors openly view the ending of a disabled life as legitimate. Peter
Singer, president of the International Association of Bioethics has commented, in respect of Down's Syndrome babies: 'We may not want a child to start on life's uncertain voyage if the prospects are clouded. When this can be known at the very early stage of the voyage, we may still have a chance to make a fresh start. This means detaching ourselves from the infant who has just been born. Instead of going forward and putting our efforts into making the best of the situation, we can still say
no and start again from the beginning' (Redefining Life and Death, St Martin's press,
NY, 1995).
A survey published in a medical journal, The Lancet, in June 17, 2000 indicated that in the Netherlands, half the doctors report administering drugs to end the lives of babies with an incurable disease and in France nearly three quarters of doctors have frequently done so. In the United States, a Director of Paediatric Surgery created a formula to measure the quality of life of babies with spina bifida: NE x (H+S) =

27
Quality of life. NE is the natural intellectual and physical endowment of the child, H is the support from home and S the quality of social services available. This formula was used to withhold treatment of 24 babies who eventually died.
In the UK, for example there are many cases of doctors, often backed up by the courts, refusing to intervene to save the life of a disabled child even where the parents desperately seek such intervention.
 A Do Not Resuscitate notice was recorded in the medical notes of a 5 month old baby suffering from a chromosome abnormality which resulted in a diaphragmatic hernia and breathing problems. After an operation to help her breathing, she was making progress until she contracted a throat infection.
An order restricting parental visits was sought and obtained by the hospital.
The baby died.
 A severely disabled 12 year-old boy was being cared for by his mother. After a tonsillectomy he was put on life support but recovered. A number of doctors decided not to treat him and after a further hospital admission for breathing problems, they put him on diamorphine to allow him to 'die with dignity'. The family pulled out the tubes and resuscitated him, fighting the doctors who tried to prevent them. Some members of the family were tried and jailed for assault but the boy is still alive several years later.
 A judge overruled a parents wishes that their 19 month old son should be resuscitated and given intensive care if needed. The boy is brain damaged and has an incurable lung disease but can smile, is beginning to show signs of vocabulary with hand and arm movements. The judge said that the parents were over-optimistic.
 A young girl with Down's Syndrome was diagnosed with a serious heart condition. The consultant paediatrician said that corrective surgery was
'inappropriate'. A second opinion at another hospital concluded that surgery was entirely appropriate and after an open-heart operation, the girl is a fit and healthy 13 year old with a normal life expectancy.
 A six year old with a rare brain disease that renders her liable to fits attended a special school where the staff decided that she should not be resuscitated if she lost consciousness for more than two and a half minutes. The school nurse told the parents and was subsequently dismissed. The parents applied to the High Court for an independent inquiry but were turned down.
Greater impunity for killing a disabled child

28

Where a disabled baby is killed or whose death results in criminal charges being brought, the courts will frequently treat the offence less severely than would be the case for a non-disabled baby, as is illustrated in the following cases. This is not done because there is clear understanding of the intolerable strain and pressure put on many parents by lack of services and support, but because of judgements on the quality of life of the disabled child and the perceived costs of keeping them alive:
 A baby born with Down's Syndrome in the UK was rejected by his parents after which the consultant ordered that he be fed no milk, just water and a strong painkiller not usually used on babies because it suppresses breathing.
The baby died at three days old. The doctor was initially charged but was acquitted claiming that the baby was very ill at birth despite the fact that in the AGPAR test used at all births to assess the vitality of babies, this baby scored 9 out of 10.
 A father who tried to suffocate his five day-old baby with Down's Syndrome was acquitted after being told by the judge that he had been acting as a responsible parent. (DAA database)
In Canada, 12 year-old Tracy Latimer was killed by her father when he propped her in the cab of his pick-up truck, into which he passed a hose from the exhaust.
Although she had quadriplegia, was unable to speak and was visually impaired,
Tracey enjoyed music, outings, mobiles, pets, and loved her family. Robert Latimer was sentenced to ten years imprisonment by an appeal judge, who referred to the sentence as 'revenge carried to an extreme'. There is a growing public campaign to release Latimer from prison and an exhibition on the Beatitudes in Alberta, Canada used Latimer as an exemplar of mercy.
Abandonment of disabled babies
In many countries, disabled babies are simply left to die or are abandoned in institutions.
 In Russia, parents are routinely pressured into abandoning a 'defective' new born baby by medical staff who warn them about the child's future as a 'social pariah', thus depriving those children of the right to family life and in all probability, condemning them to a life in large, soulless, loveless institution
(Human Rights Watch 1998).
 In China, the phenomenon is illustrated in the case of a man who found an abandoned baby girl with a hare-lip in a rubbish bin. He and his wife have found another four babies with cleft palates and heart conditions and are bringing them up without state financial aid (DAA, 2000).
 In Pakistan infertile women in Gujrat pray for babies and promise to give their first born to the Sufi (form of Islam) temple. They are told that their first child will be deformed anyway and that if they do not give it up all further children will be disabled. There is a strong possibility that these children are then

29 brought up by people who deliberately deform their heads with iron rings.
These so called 'rat children' are also facially scarred and have no speech.
They become beggars, earning more per day for their masters than a civil servant receives (DAA, 2000).
A report commissioned by the Down's Syndrome Association in the UK in 1999 cites the following experiences of abuses in respect of the value of the life of a disabled child:
 A mother was told that people would look away from her baby in horror.
 A mother was told her baby would be good for nothing.
 Health professionals describing the babies as 'happy idiots'.
 A six month old baby given no pain relief after heart surgery because 'Down's children don't feel pain'.
 Without examining her child, a mother was told in front of students that the child's heart condition was inoperable.
 Parents were told to go away and have another baby.
Unequal protection of the right to life
All these typical illustrative cases highlight the very widespread view in many countries in the world that the life of a disabled child is worth less than that of other children. They demonstrate that where professionals or parents deem the quality of life of the child to be diminished by disability, it is seen to be more acceptable to kill the child or allow him or her to die. This contempt for the lives of children represents the most profound violation of human rights. It reflects an attitude well exemplified in the words of an eminent and senior barrister in the UK who observed that 'You can get at one end (of the spectrum) the outrageous serial killing, at the other end you
get the mercy killing ­ somebody killing their mongol [sic] child for example'. The fact that the denial of the right to life is publicly defended and perceived as legitimate is a measure of how far attitudes need to change before disabled children cease to experience discrimination. Until these attitudes are challenged, and a disabled child's life valued alongside and as of equal worth with non-disabled children, it will not be possible to begin to tackle the myriad of other discriminations perpetrated daily on millions of disabled children.
"At the outset, my mother was told by the doctor, "Forget about this little girl. Place
her in an institution. You have other children."
3 The right to an adequate standard of living for proper development
­Article 27
Article 27 of the Convention on the Rights of the Child insists that every child has the

30 right to a standard of living adequate for their physical, mental, spiritual, moral and social development. In other words, it acknowledges that children need more than freedom from absolute poverty and are entitled to a standard of living which enables them to fulfil their developmental needs. The obligations on governments are also stressed in Article 6 that protects not only the right to life but also to optimal development. In reality, this right is denied for many millions of disabled children.
Poverty is both a cause and a consequence of disability. While the risk of impairment and disability is much greater for poor children, the presence of a disabled child in a family is likely to drive the family further into poverty.
Poor children are more likely to be malnourished and experience Vitamin A and iodine deficiencies, are more vulnerable to infection, less likely to have resistance to illness or access to health care, they are more likely to lack clean water and sanitation. All or any of these factors might contribute to illness and disability. Once they have a disabled child, the family may be hindered in their ability to produce food, or generate income owing to the additional care required. Mothers are often ostracised by their communities or abandoned by husbands. In other words, the productive level and capacity of the family diminishes as the burden of care and costs increase (Pretorius, 1998). In consequence, families with disabled children are disproportionately represented among the poorest in most societies. In South Africa, for example, more than 80% of black disabled children live in extreme poverty, often in inhospitable environments with poor access to health care. It is estimated that
98% of mothers with disabled children in rural areas are unemployed, functionally illiterate single women (Disabled People South Africa, 1998). Furthermore, the endemic failure in most developing countries to ensure the right of access to education for disabled children condemns them to a future life in which they lack the knowledge and skills with which to rise out of poverty.
The problems have been compounded by the introduction, particularly in many developing countries, of fees for access to basic social services as a means of expanding investment and improving quality of health and education services. In effect, such policies transfer responsibility for the provision of health care and education from the state to the individual parent, with devastating consequences for children, particularly disabled children. The imposition of charges has resulted in the denial of access to education and health care for many millions of children with few positive benefits. In health they have been directly linked with the resurgence of certain childhood diseases, rising child mortality rates and a reduction in the use of health facilities in sub-Saharan Africa (Harper and Marcus, 2000). A review of the evidence of imposing user charges in 1996 indicates that they do not guarantee greater efficiency and effectiveness, they actually realise very modest amounts of money compared with overall budgets allocated to basic social services, they lead to a reduction in the usage of services particularly among the poor and they exacerbate discrimination, for example, girls and disabled children are less likely to gain access when costs are imposed (UNICEF 1996).

31
4 The right to protection from all forms of violence or torture, inhuman or degrading treatment ­ Articles 19 and 37
Article 19 of the Convention on the Rights of the Child states that all children have the right to protection from all forms of violence. Whilst violence remains a problem for most children, there is evidence that the prevalence of abuse is even higher for disabled children. A recent study of over 40,000 children in the US reveals that disabled children were more likely to experience multiple episodes and multiple forms of abuse than their non-disabled peers: they were nearly four times more likely to be neglected, and physically abused and over three times more likely to be emotionally abused. All disabilities were associated with an increased risk of abuse but children with speech and language disorders or behaviour disorders were seven times more likely to be emotionally abused. Maltreatment occurred in 31% of disabled children often from birth to five years of age (AAP News, February 2001).
Other research indicates that 50% of deaf children and young people and 60% of those with an intellectual disability are sexually abused (Roeher Institute, 2000).
"Annie said of her friend Stephen who did not escape from St. Nicholas: "Stephen's death was the end of my belief in God. Previously I had wanted to believe in a caring
God, who could love even people like us. No one who loved Stephen could have let him die a prisoner of his own body and of the Health Commission. Stephen had been allowed no visitors in the year before he died. He had no way of complaining, no way of communicating. He was a political prisoner. It was heartbreaking to be forever unsure of what he knew. Did he think he had been abandoned? Did he know how much he was loved and how we were working to free him?"
"My name is Jeeab. I have lived at K*********t home for a long time. I get tied up most days. They say this is because I may trip and hurt myself. The house sister sometimes doesn't tie me up as she has 'trained me' to stay in the same place in front of the dormitory. She makes me lie down on the floor without a mat or a bottle of water. I cannot help myself and so urinate on the floor and become thirsty. I am developing pressure sores on the skin on my hip bones, and it is sore. When my friends try to feed me they become impatient as I have problems in chewing and swallowing my food. I therefore eat very little, and am losing weight. Please help disabled people like myself, to have some power over our lives, so that we can lead happier and more comfortable lives."
"My name is Vichien. I have lived at K*********t home for a long time. I get tied up often, because I am 'a nuisance' to staff and to visitors. I have no money of my own so when visitors come I ask them for money. The staff do not like me doing this.
Sometimes I help myself to other peoples belongings. When I am tied up I cannot go to the toilet or help myself to get a drink of water. I wet myself, and I am very thirsty. Sometimes the staff tie the cloth too tight and my hands become blue and swollen. It is unsafe and is uncomfortable. Please help disabled people like myself, to have more power and to lead a more happy life."

32
Institutional abuse
Disabled children are more likely than their non-disabled peers to be hidden from view or forced to live in institutional care with little or no capacity to challenge violence, abuse or neglect. Too often, staff are not trained, are paid low wages, there is no system for regular reviews, children have no rights to independent advocacy or mechanisms for complaint in the event of abuse. The low status with which disabled children are widely regarded in many societies further exposes them to violence and abuse. The violations of disabled children's right to respect for their physical integrity exist throughout the world.
 Evidence that emerged from Eastern Europe during the 1990s exposed the scale of neglect, amounting to torture and inhuman treatment, to which disabled children were subjected. In one girl's orphanage in Moldova, unfortunately not untypical, children were half-starved and neglected. Bedding was filthy and in 1996, 30 children died of cold and malnutrition. The orphanage director described them as imbeciles although with care, education and support many would walk, talk, and learn. There is money available but much of it is syphoned off by the staff. In a home in Bulgaria, 'mentally disabled' children were tethered to their beds and left to freeze at night when the heating was turned off to save money. In 1995, 15 children, a quarter of the residents, died as a result. In the Russian Federation, orphanages are frequently filled with young children known as 'small brained'. This can mean anything from cleft palates, hole in the heart babies, or children with cerebral palsy or Down's Syndrome. They are often left to die as no one attempts to feed them.
There is a lack of awareness that these children are educable living people. Rather, they are often referred to as imbeciles.
 In institutions in Malaysia, physically and mentally impaired young boys are tied to beds without mattresses, wallow in their own filth and are hosed down with water
(The Australian Melbourne Age, 1992).
 In an asylum in Iran children were tied to iron beds with thongs and chains in unnatural and painful positions. One 12 year old lay virtually crucified on the concrete floor. His limbs were lacerated and infected where the manacles had bitten into his flesh and cockroaches abounded.
 In Greece, to have a disabled child can be considered shaming and a cause of bad luck. They are often placed in institutions. Typically, they may be tied to their beds, put in large locked cots with bars over the top and force fed on a diet of bread and milk whilst lying on their backs and kept there throughout their lives.
 In Japan, corporal punishment is more likely against disabled children. Teachers and nurses administer corporal punishment, sometimes in the professional belief that it is necessary to guide the child to overcome his or her disability (Japan National
Coalition, 1997).

33
Abuse in families
But it is not only in institutions that children suffer. Particularly in those countries where disability is viewed as a curse or a punishment the reaction of many parents is to treat their disabled children with appalling levels of violence, neglect or inhumanity. Examples of children being locked in houses, forced to live with animals, underfed, left unwashed, denied medical care, isolated from all love or social interaction are depressingly commonplace in countries as widespread as Tanzania,
Zambia, China, Sri Lanka, Israel and Nigeria.
Parental neglect and abuse of disabled children
 A Palestinian teenager was kept in a barred cage with only bread and water to eat.
She was hosed down to keep her clean. Other mothers threaten their children that she will be let loose to punish them. She makes sheep-like noises as for 14 years she was tethered with them.
 In Zambia a disabled child has been locked inside for 15 years because his parents are ashamed of having him. The child is not given a bath and is contaminated with faeces.
 In Nigeria a five-year old girl with cerebral spinal meningitis as well as learning difficulties and physical impairments was locked into a specially built hut on her father's farm for two years. Her step-mother refused to let her into the house because she was doubly incontinent. She ate the hay she slept on and emptied her bowels into the grass she chewed. Her plight was discovered because the father approached street cleaners for any leftover scraps which they believed would be given to a puppy. The child's father was then prosecuted and imprisoned for 9 months but the step-mother received no punishment because she is related to the magistrate.
Typical examples taken from the DAA human rights violations database.
Professional abuse
Medical professionals themselves are often responsible for violating the right of disabled children to respect for their physical integrity. In Australia, for example, girls with learning disabilities, as young as nine, are being sterilised to prevent problems with pregnancy and avoidance of the need to manage menstruation.
According to a disability discrimination commissioner, 1045 such sterilisations were carried out between 1992-1997 (DAA database). Disabled children in a mental hospital in New Zealand were not only found to have been sexually abused by staff, but were subjected to ECT, paraldehyde injections and electric shocks as punishments. In China, the problem is exemplified by the case of a disabled child who was left on the floor of the waiting room of a hospital for five days after his parents abandoned him. Finally the mother of another child persuaded the staff to attend to him. He was diagnosed with encephalitis, put on an unheated ward and left

34 to die.
Abuse from peers
It is not only from adults that disabled children suffer abuse: they are also widely subjected to bullying from other children. Research in the UK in 2000 with disabled children found that all the children interviewed identified 'getting picked on' as a universal experience for disabled children. The children documented physical, emotional, and verbal bullying ­ name-calling, being kicked and hit and being excluded from peer groups (Watson, Shakespeare, Cunningham-Burley and Barnes,
2000). Their experiences are replicated in countries around the world where disabled children are repeatedly teased and tormented by their peers.
Bullying by peers
In Tanzania, a primary school child had a leg amputated as a result of a car accident and is constantly harassed and teased by non-disabled children who throw his crutches away from him into the road and regularly reduce him to tears.
DAA database
5 The right to inclusive education on the basis of equality of opportunity ­
Articles 23 and 28
Article 23 stresses that disabled children have the right to education in a manner conducive to the achievement of the fullest possible social integration and individual development. This obligation must be considered alongside Articles 28 and 2 which affirm that education for disabled children must be provided without discrimination and Article 29 which requires that education is directed towards developing a child's personality, talents, and mental, and physical abilities 'to their fullest potential'.
Access to education
The internationally agreed goal of achieving the human right of all children to a quality education is far from being met. The World Conference on Education for All in
Jomtien in 1990 promised universal access to good quality primary education by the year 2000. The promise was not met. The World Forum on Education held in Dakar revised the failed targets established in Jomtien, requesting developing countries to draw up national plans for achieving universal access to primary education by 2015, whilst the rich nations pledged that no plan would fail because of inadequate funding.
'Universal' means every child including those who are disabled. There is a long way to go.

35
In Vietnam, in order to calculate the school attendance rate, the number of disabled children, along with unregistered and migrant children is first subtracted from the total number of children in the district. The result is
that disabled children are not even regarded a part of the equation
(Bond, 1998).
The Committee on the Rights of the Child has consistently expressed concern about the low proportion of disabled children enrolled in schools worldwide (Hodgkin and
Newell, 1998). For example, in Egypt only 1% of disabled children go to school. In
Mozambique it is estimated that only 1% of deaf children attend school (Lehtomaki,
1999). Only 10% of Kenya's blind children attend school, and only 4% of disabled children overall, compared with 85% of non-disabled children (DAA, 2000). Indeed, in most developing countries, it is estimated that only 2% have such access. In
Vietnam, until recently, the picture was even more dramatic. It was estimated that only 0.001% of disabled children had any access to educational provision. In countries as varied as Japan, Argentina, Georgia and other former Soviet Union countries, diagnostic techniques are used 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, and, typically, the views of parents and children, and the actual needs and abilities of the child are routinely ignored (ISCA, forthcoming).
In the Mazabua area in Zambia, only 3 out of 238 disabled children go to school and this is because their parents are teachers. The others are excluded because the nearest school catering for disabled children is 250 miles away, parents would rather pay school fees for non-disabled children as disabled children may fail and indeed, many parents believe that disabled
children are useless, unproductive and need looking after (DAA1999).
In 1996, in a survey on educational provision for disabled people, the Special
Rapporteur for Disability found that of 80 countries providing information, ten gave no guarantees in law to education for disabled children and that, although many developing countries have recognised the right to education, it has in many cases not been applied to disabled children (Lindqvist, 1996). These shocking findings are confirmed by UNESCO in a review of 65 countries, where only 44 reported that general legislation applied to children with special educational needs. 34 countries reported that children with severe disabilities were excluded from education, and further, that in 18 of those 34, disabled children were actually precluded by law from the public educational system. The Special Rapporteur has concluded that the rates of enrolment are very low in far too many countries (Commission for Social
Development, 1996).

36
Barriers impeding access
Even where education is available in principle, there are often insurmountable barriers impeding access. Parental ignorance regarding their children's capacities to learn also render them reluctant to send their children to school. Buildings are often inaccessible, teachers are unskilled and lack training and signing and Braille are not available. In Tanzania, for example, as in many other Sub-Saharan African countries, the distance children have to travel to school renders it impossible to attend and no help is given to overcome the problems of transport. The broader failings in too many schools across the world are compounded when experienced by disabled children. The depressing reality is that for many millions of children, school is a negative experience with an irrelevant and badly designed curriculum, teachers who are too often poorly trained and unmotivated, and a culture which is violent, repressive, discriminatory and disrespectful. The narrow focus on 'access to education' has often been pursued at the expense of the quality of education being provided. If the world's children, including disabled children, are to be provided with relevant and valuable education, a great deal must change. In particular, governments must start listening to what children around the world are saying about schooling, and work towards the creation of inclusive education environments that are founded in respect for human rights.
The right to inclusive education
However, not only are many millions of disabled children denied education, but when it is provided, too often it is in special schools which segregate them from their peers and offer fewer and lower opportunities. Segregated education not only discriminates against disabled children, but it also reinforces discriminatory attitudes and prejudice. It serves to marginalise and isolate children from their peers and from the wider society, as the following typical examples from the DAA database reveal.
"I have been to all types of schools. In the special school I was treated as if I didn't understand anything. I tried to make friends but we were all so badly treated that it was impossible to ever talk to each other. I don't see those people now because I get so sad."
Segregation and marginalisation of disabled children in education
 A four and a half year-old girl with Down's Syndrome was turned down by 38 schools. Some head teachers saw examples of her work, offered her a place and then turned her down when they were told of her impairment. One headmistress said, 'Good Lord, we don't take those here. It would hold my girls back'. At the nursery school that finally took her she is doing well,

37 learning to read and speak her father's language, French, as well as her mother tongue, English.
 Two boys, one a power wheelchair user and the other paralysed by a gunman, have been refused entry to a local school by the Los Angeles Unified
School District because it will cost too much. Notably, the same School
District had recently spent $25,000 on publicity to help them fight the teachers union!.
Disabled children in Mongolia in special schools are taught by staff trained in the former USSR along medical lines known as 'defectology'. It is estimated that fewer that 10% of children with visual or hearing impairments or learning difficulties are receiving any education.
Instead, what is needed is a move towards inclusive education that reflects the philosophy of the Convention on the Rights of the Child and welcomes all children, without discrimination, into ordinary schools. Though we must stress that education is not inclusive unless it provides all the specific supports the disabled child requires, such as communication aids, sign language, written material on tape or in Braille, personal assistants, technical aids and a barrier- free access and learning process.
But isn't 'special education' is better for children with 'special needs'?
Recent research in the UK debunks many of the arguments put forward to defend the practice of 'special' education' (Alderson and Goodey, 1998).
 Special schools are better equipped and resourced ­ but despite higher allowances per student they have lower total budgets and lack the capacity to offer the range of mainstream schools such as libraries, technology, drama and sports departments. Many of the high costs of special schools do not benefit the children ­ transport, boarding costs, selection procedures ­ which would be better transferred to mainstream schools.
 Special schools have higher staff ratios - but often not to the benefit of students who were observed to spend much time waiting for lessons, repeating simple tasks. In special schools staff often lack the subject specialisms available in mainstream schools.
 Special schools protect from failure, and bullying ­ but protection from failure is often at the expense of offering opportunity. And bullying is evident in special schools as well as mainstream. Promoting inclusive cultures in all schools is surely a better way of tackling the problem than separating children.
Special schools provide a good academic education ­ certificates earned in special schools are often considered worthless compared to those earned in mainstream schools ­ so the students fail just the same.

38
The Committee on the Rights of the Child has stressed the importance of developing measures to promote inclusion of disabled children in mainstream schools (Hodgkin and Newell, 1998). The World Conference on Special Needs Education in 1994 produced the Salamanca Statement, signed up to by 92 countries, which stressed that children with special educational needs must have access to regular schools. It urged all governments to give the highest policy and budgetary priority to improve their education system to include all children regardless of individual difficulties
(UNESCO, 1994). As a follow up to the conference, UNESCO launched a project to support action and disseminate information on small-scale innovations at national, provincial and local level promoting the inclusion of disabled children in mainstream education. To date initiatives to achieve this objective have begun in around 30 countries. A survey undertaken by UNESCO in 1993-4 of 63 countries indicates that the principle of inclusion is slowly beginning to gain wider currency but that there is wide variation between countries.
The economic and moral case for inclusive education for all disabled children
Given the scale of the difficulties faced by many governments in developing countries, in achieving full implementation of Article 28, it is all too easy for the rights of disabled children to be sidelined and afforded low priority. However, there are powerful economic, as well as moral arguments for inclusive education for all, as a matter of priority.
 Unless the rights and needs of disabled children are incorporated into the development of education at the earliest stages, the education system will become entrenched in an 'able- bodied' culture and ethos which will subsequently be far harder to change: buildings will be designed without universal access, teachers will not be appropriately trained, equipment will fail to take account of the needs of disabled children. Governments which are working towards the attainment of the international development target of universal access to basic education by 2015, must commit now to ensure that equal opportunities for all children inform its strategies for achieving that goal.
 A World Bank report has suggested that universal primary education cannot be achieved in developing countries without the inclusion of disabled children in mainstream systems and that they can be successfully and much less expensively accommodated in inclusive rather than segregated settings.
Furthermore, educational benefits for all children may be associated with quality improvements that are inherent in providing inclusive primary education, through major changes in the way schooling is planned, implemented and evaluated (Lynch, 2000). The report also argues that 'If

39 segregated special education is to be provided for all children with special educational needs, the cost will be enormous and prohibitive for all developing countries. If integrated in-class provision with a support teacher system is envisaged for the vast majority of children with special educational needs, then the additional costs can be marginal, if not negligible'.
 It is a fundamental principle of the Convention that all the rights it embodies extend to all children without discrimination. Any policy that directly or indirectly excludes disabled children from accessing rights undermines its very ethos. It will feed into and affirm existing prejudices that disabled children are less worthy or valued than others, and is unfavourable for a commitment to respect for human rights.
 One of the messages emerging from the General Discussion Day on the rights of disabled children held by the Committee on the Rights of the Child in
October 1997, was the importance of recognising disabled children as contributors to society, not burdens. It is in the economic interests of the
Government to invest in the education of disabled children in order that they can become effective members of the labour force as they grow up.
"...After school and in the holidays you just stay at home at night ...Too difficult to do it and nowhere to go ...and finding a friend is difficult."
6 The right to participate and to social inclusion ­ Articles 12, 18 and 23
The principle that children are entitled to be listened to and taken seriously in all matters of concern to them is not only articulated in Article 12 of the Convention on the Rights of the Child but embedded in its entire philosophy. The Convention demands that children are treated with respect and dignity and are recognised as active social agents in their own lives. And of course, exactly the same principle applies to disabled children as to non-disabled children. To date, the principle of participation is poorly respected for most children in most countries throughout the world, but the difficulties are compounded for disabled children.
" I think when you don't have friends you can't experience real life because real life is how you get on with other people. I can't do anything on my own so I am completely dependent on people helping me, so if I am not going to be surrounded
by only personal assistants, I have got to find a way of making friends."
The barriers impeding participation are many. There are physical barriers in the built environment that prohibit children from sharing activities and experiences with their peers. Schools, playgrounds, fast food outlets, leisure centres, even the streets, which are commonly used by their non-disabled peers, are often inaccessible to disabled children. Added to these barriers are those of attitude imposed by other

40 children and young people who can and often do subject disabled children to shunning, bullying and name-calling. And finally, there are the direct and indirect discriminations perpetrated against disabled children by the adults in their lives.
Widespread assumptions of the incompetence of disabled children or even an indifference to their exclusion, coupled with a perception that, as 'lesser' people, their opinions are not worth eliciting mean that the concerns and experiences of disabled children are almost universally hidden. Their opinions on their education or lack of it, their lives in institutions or opportunities for friendships, their experiences of discrimination, neglect or abuse, their aspirations for employment, marriage and children are rarely sought. Accordingly, disabled children themselves are unable to influence policies, programmes or services that impact directly on their lives.
"Many times people do not want to play with me because I cannot move quick
enough. They call me bad names and make fun of me when I try and play."
Recent questions and comments made over the heads of disabled children
The following questions and comments made by professionals and strangers in the presence of disabled children illustrate vividly the extent to which disabled children are excluded and denied respect and value (Marchant, 2001). These particular examples were heard in the UK but can be replicated in countries throughout the world.
 Is he a Down's Syndrome?
 Is she spastic?
 Does she talk?
 Is he yours?
 Will he get better?
 Was she born like that?
 Does she always do that?
 Can't you keep her still?
 Is he dangerous?
 Is there a cure for it?
 Have you tried compensation?
 Have you tried a dairy-free diet?
 Can't you keep her quiet?
 What a shame
"I have no one to talk to because I am told I speak bad. I don't talk to people
because they always laugh at me."
Recent research in the UK with more than 300 disabled children found that they

41 wanted to locate themselves in the world of children but found it very difficult to do so because of these barriers. Even where peer relationships between disabled and non-disabled children were established they were frequently dominated by assumptions of need and care: the non-disabled children behaved not as equals but as guides or helpers.
Yet it is of profound importance that this is a matter of principle. Unless adults listen to children and take account of their views, actions taken in respect of those children will be less effective and relevant. Children have a body of experience and knowledge that is unique to their situation, and have views and ideas that derive from that experience. The widely held view that adults always know best or that they are able or willing consistently to take account of children's best interest without reference to children themselves is not borne out by the evidence (Lansdown, 2001).
Effective policies, programmes and projects need the best information available and that can only be achieved with reference to those directly affected by them. The importance of this principle is acknowledged in the recent OECD report in its observation that: 'Empowerment gives people dignity, a sense of inclusion and the moral strength to help themselves economically. Providing a voice in decisionmaking means pursuing the involvement of poor people and society at large in policy, programme design and implementation. Indeed, responsible and accountable governance has often been found to be the missing link between anti-poverty efforts and anti-poverty reduction' (OECD, 2000). Exactly the same principle applies to children. Consulting children and drawing on their perceptions, knowledge and ideas are essential the development of effective public policy.
'Many disabled people we know are raped ­ by teachers and by relatives.
But because they can't talk, nobody believes them, so the case is always thrown out' (Representatives of the Zimbabwe Association of Parents of
Handicapped Children).
7 The right to family life ­ Article 9
The Convention in its entirety emphasises the vital importance of families in promoting the healthy development of children, whilst placing clear responsibilities on states to support parents in fulfiling that role. The preamble states that 'the family, as the fundamental group of society and the natural environment for the growth and well-being of all its members and particularly children, should be afforded the necessary protection and assistance so that it can assume its
responsibilities within the community'. This commitment is further elaborated in a number of articles stressing the importance of protecting children's rights in relation to their families ­ the recognition of parental rights and responsibilities, rights of children to know their families, not to be arbitrarily separated from them, to

42 reunification if separated, to the shared responsibilities of both parents and parents obligations to promote the best interests of children. And in order to protect and promote these rights, the state is required to 'render appropriate assistance to parents and legal guardians in the performance of their child-rearing responsibilities
and shall ensure the development of institutions, facilities and services for children'.
(Article 18).
In addition Article 23 stresses the right of disabled children to 'active participation in
the community' and to the 'fullest possible social integration', which clearly indicates a responsibility to minimise their institutionalisation. Indeed, the Committee on the
Rights of the Child has questioned the placing of disabled children in institutions and argued that governments should improve levels of support to families in order to avoid it.
However, the fact remains that disabled children in many countries in the world are systematically removed from their parents and placed in institutional care. For example, in almost all countries in Central and Eastern Europe, the rates of children in public care have increased since the onset of transition. The numbers of children aged 0-3 years living in institutions have increased in ten of the fourteen countries in which data exist ­ by 45% in Latvia and 75% in Estonia (UNICEF, 1999). There are more than 1 million children currently living in institutions in the region, often in conditions which are appaling. As economic conditions in these countries have worsened, so too has the quality of institutional care provided. Medical care has been pared down, there are many examples of children confined to bed, provided with little food and no heating. One report from Georgia estimated that children in institutions received a maximum of five minutes of human contact per day and that only when they are hosed down and changed (Burke, 2000). These practices result in developmental delays, irreversible psychological deficits, deterioration in children's physical condition and exacerbation of their impairments. Research in the Russian
Federation has shown that developmental problems amongst institutionalised children are rising, as are cases of delayed growth, second and third degree rickets, and anaemia (Zouev, 1999). And as these problems grow, they render it increasingly difficult for children ever to return home, forcing them to face the prospect of life- long institutionalisation.
'It is clear that as a society we do not want to include disabled children. We do our best to prevent their birth. If this fails we seek to normalise them. If this fails we render them invisible by an elaborate system of segregation'
(Middleton, 1996).
The losses faced by these children, and those in institutions all over the world are difficult to over-estimate. They are denied opportunities for love and affection. They

43 are excluded and segregated from all aspects of mainstream cultural and social life.
They are forced into segregated education, frequently with reduced opportunities for gaining access qualifications. They are widely exposed to physical and sexual abuse.
They often receive inadequate health care. They are offered few opportunities to acquire self-esteem and a sense of self worth. They are rendered invisible in the wider society, perpetuating the discriminatory and prejudiced attitudes towards them. Segregation also perpetuates the view of the disabled child as the problem - not the disabling environment in which he or she lives. The accumulative denial of rights faced by many disabled children in institutional care highlights the necessity for urgent action to promote enhanced opportunities for disabled children to live with their families and local communities.
"Fatima, who was born in Fez, had polio when she was very young. She uses crutches. "My parents seemed ashamed of me and believed that they had been cursed. If there was a visitor to the house or a party I was hidden away. When I was only a few years old they abandoned me in a residential institution. Why did my parents want to punish me for my disability? Why was I not allowed to participate in
normal family activities?"
POSITIVE ACTION TO PROMOTE THE RIGHTS OF DISABLED CHILDREN
Change is possible. Despite the scale of the violations, and despite the extent of discrimination and hostility towards disability, there are concrete examples of policy and practice throughout the world which indicate what can be achieved with vision, commitment and a willingness to listen to disabled children and their families. It is vital that these positive examples are disseminated, shared and built on in order to extend and strengthen good practice in promoting and respecting disabled children's rights
throughout the world.
This is just a sample selection of projects each of which includes disabled children with different impairments, gives them a voice, empowers them and supports their inclusion in mainstream society. We know that there are many other examples world-wide and that we have not covered all important areas of a disabled child's life. However, these examples show that progress has been made, learnt from and extended.
Listening to children and empowering them to protect their own rights
Chailey Heritage, UK 1
Chailey Heritage is a specialist centre for children with complex physical and multiple impairments offering education, residential care, medical treatment and

44 rehabilitation. Until the late 1980s, the staff had assumed, like many others, that disability would provide a protection for children against abuse. However, more recently, they had come to realise that not only is that not the case, but that disabled children are at very high risk of abuse by those who care for them. The staff therefore wanted to explore ways of changing their practice to try and empower the children to be less vulnerable and more able to express what was happening to them.
"If you got summat to say, you've got summat to say, it don't matter how old you
are."
The first lesson they learned was that the child protection resources available for work with children in this field were totally inappropriate for many disabled children:
 The pictures only included non-disabled children.
 The safety messages were based on skills and resources that were not available to many of the young people at Chailey: messages to say no or to run away are singularly unhelpful for children who do not talk or walk.
Equally, advising children to say no when they spend their lives in residential settings where they have no control over any part of their lives is unlikely to be effective.
 Messages about adults not touching the private parts of the body were very confusing for young people who need help with intimate care.
They also decided that there is no point in trying to teach children that they have rights not to be abused, and to reject unwanted touching or interference unless the children began to have some control over other aspects of their lives. In other words, only when the children felt empowered by what was happening to them generally, would they be able to protect themselves in situations of abuse.
Accordingly, it was decided to produce a children's charter that would provide the baseline for the treatment of children at the Centre. The young people and a group of parents were involved in deciding what should go in the charter. It included four basic rights:
 To be valued as an individual
 To be treated with dignity and respect
 To be cared for as a child first
 To be safe
The practical application of these rights is then set out in the charter.
The charter had to be introduced into the philosophy and practice of the Centre. All staff were trained and helped to understand its implications for the way in which the

45
Centre was run. This involved seeking to enhance their understanding about how prevailing attitudes and cultures devalue and disempower children and in consequence renders them more vulnerable. Work was also undertaken on helping young people understand their responsibilities as well as their rights. A Chailey
Young People's Group was set up to meet weekly and discuss their feelings about how young people are treated at Chailey and to develop ways of helping young people who come to Chailey to be able to complain, express their worries or communicate their opinions. The group has appointed an advocate, who is independent of Chailey, and who provides an advocacy service to any child needing help. Being listened to is one of the aspects of the Group most highly valued by the young people. As one member with a speech impairment commented: 'The fact is that you can talk until you are blue in the face, but if you have no-one to
listen it's not going to do you much good'.
Comment: The project has broken new ground in two ways. It first recognises that child protection resources targeted at non-disabled children are both inadequate and often inappropriate for disabled children. It also recognises that vulnerability to abuse arises in the context of vulnerability and disempowerment in the daily lives of children and that the solution must therefore lie in creating environments in which children have greater control over their day-to-day lives. Accordingly, the methodology used in the project of involving the children at every stage was vital to its effectiveness. An adult-imposed charter and practice guidelines would have simply replicated the children's sense of impotence and inability to take responsibility for what was happening to them.
World Blind Union (WBU), South Africa 2
In 1999, South Africa hosted the WBU SADC Youth Seminar in Pretoria. The seminar was attended by young people from 13 countries including Mauritius, Mozambique,
Namibia, South Africa, Swaziland, Tanzania and Uganda. During the seminar, representatives from each country introduced themselves and shared experiences and activities of blind young people in their countries. Presentations and workshops were given on empowering disabled young people, organisational skills, CBR and self help projects. There was an emphasis on the importance of disabled people realising that they can create their own job opportunities. The seminar included a resolutions committee. The third day involved an excursion to a goldmine and a historical tour of
Soweto. The seminar provided an opportunity for new friendships to develop and much laughter as well as serious debate.
Comment: The opportunity for blind young people to come together and share ideas, experiences and skills, as well as have fun, is an empowering process. Of particular importance in this case was that the seminar was organised and run by

46 disabled young people themselves, with support from other agencies. However, it is necessary that such events are followed up with opportunities to translate what has been learned into the realities of the young people's everyday lives. Without such a commitment, the event becomes an enjoyable memory that ultimately changes nothing.
Empower 2001: young people doing it for themselves, UK 3
Two disabled young people are empowering young people by running a 3 day residential training course for disabled and non-disabled young people to learn how to help each other. The trigger for the course is a new initiative in the UK through which Social Services Departments can now offer direct payments to young disabled people to employ their own personal assistants. The course will provide the knowledge and skills necessary for undertaking this role. It is ideal work for students wanting part-time employment or an opportunity to learn new skills in a 'gap year' ­ a year between leaving school and starting university. 'Empower 2001' will be new and different because the assistants will be trained in the social model of disability and most of the training will be done by young disabled people themselves.
The management team for the initiative includes three non-disabled young people. It employs a mentor whose role is to support the work of the team of trainers and keep it focused. 17 year old Katie, one of the trainers, who uses a wheelchair and a sophisticated communication aid, has been employing young assistants for several years says "This has enabled me to enjoy a very normal teenage social life with people my own age and I would like to encourage other young disabled and nondisabled people to think about using and becoming personal assistants." Lucia, also
17, who is registered blind, says "It helps if someone guides me in an unfamiliar environment and it's much better if that person is someone of my own age who wants to go to the same places as me. Because I haven't had the opportunity of using an assistant, I haven't been able to do things others take for granted. My aim with 'Empower 2001' is for other young disabled people to have the opportunities I never had."
Comment: One of the consistent messages that emerge from research with disabled children and young people is the lack of opportunities to be with friends, to play and to have time away from adults. This scheme offers new opportunities for both disabled and non-disabled young people to learn to work together for mutual benefit and at the same time to extend real opportunities for friendship and fun. The scheme was not only initiated and devised by disabled young people but is also being managed and delivered by them. It provides tangible evidence of the competence, imagination and resilience of the disabled young people when they are given a voice.

47
Committee on the Rights of the Child (CRC), Geneva 4
In October 1997, the UN Committee on the Rights of the Child held its General
Discussion Day on the theme of rights for disabled children. Two disabled young people from South Africa were invited to make a presentation.
'I am Chantal Rex. I am a 17 year old disabled youth, representing South Africa'
'I am Pearl Makutuone. I am a deaf youth from Soweto in Johannesburg'.
These were the opening words of two young girls giving the first formal presentation by children themselves, to the UN Committee on the Rights of the Child. They were invited to give a first hand presentation of their experience and hopes.
Chantal spoke of how her family had been forced to move from their rural village to
Cape Town, in order to get medical and educational support. Pearl, deafened by riots in Soweto, spoke of her frustration and loneliness because of communication difficulties and superstitious attitudes to disabled people. Their words gave validity to previous presentations by disabled adults, who had described the continuing violations of disabled children's right to life itself. Following the words from children themselves and supporting information from the NGOs present, the Committee gave a strong commitment to further action. There was no doubt that the voices of the two girls both moved and inspired participants.
Comment: The direct voice of disabled children was heard in an arena which is dedicated to promoting children's rights but rarely hears from those children themselves. The experience demonstrated the capacity of young people to contribute effectively in a predominantly adult environment and the impact that the direct voices of children can make to those in positions of power and responsibility.
Multimedia consultation with disabled children and young people, UK 5
The Children's Society, an NGO, undertook a consultation process with disabled children and young people to gain their views and experiences of services they use under a local authority scheme to provide services for them. Six projects took part and involved two hundred children and young people with physical and sensory impairments and learning difficulties. The consultation focused on the views of disabled children and young people who had experienced services dealing with the transition to adulthood, play and leisure, residential care, and assessment and review processes.
The consultation process differed from traditional forms in that a multimedia

48 approach was adopted. The use of drama, song, art, animation, stories and video diaries are just a few of the methods used to gain the views of disabled children and young people. This approach enabled children and young people to convey their experiences and views through a medium of their choice.
A core group of young people involved in the consultation were trained and paid as researchers. Their task was to work with groups of children and young people and support them to put their views into a multimedia presentation recorded on CD-ROM.
The findings of the consultation were presented in a set of CD's in February 2001.
Comment: This project highlights the importance of offering children creative and varying methods of imparting their ideas and experiences, particularly those who might have difficulties using more conventional approaches. For example, some children, who were in care of the local authority, wanted to participate in the regular reviews which take place to monitor their progress, but felt intimidated by participating in a meeting of adult professionals. However, they were able to express their views when offered the opportunity to give a presentation using video or powerpoint.
The project also demonstrates that disabled children, in exactly the same way as all other children, are able to act as researchers when properly trained and supported, and in the process gain enormous confidence, self-esteem and a sense of achievement.
Article 12, UK 6
In 1995, the young people on the management council of an NGO, the Children's
Rights Development Unit, organised a conference of 60 children and young people, aged between 9-18 to explore the proposal that there should be a national organisation run by and for children under the age of 18 years to promote their right to be heard. The participants, who came from a wide range of social, economic and ethnic backgrounds, decided that they wanted to establish such an organisation. The
Children's Rights Development Unit staff agreed to facilitate the process and provided help with administration, fund-raising, publicity and recruitment. The young people established a steering group of 25 young people, both disabled and nondisabled, who decided to raise money to appoint an adult support worker to manage the day-to-day running of the office. However, children lead all the decisions and activities themselves. The organisation, called Article 12, now has 500 members. It is campaigning for greater democracy and inclusion in schools, for lowering the voting age and for an end to physical punishment of children. Its members regularly speak at conferences, talk to the media, run seminars, meet with politicians and contribute their expertise to working groups of other NGOs. In 1998, the members

49 undertook a consultation with children on how far they felt their rights are heard under Article 12 of the Convention on the Rights of the Child and were respected.
This consultation report was submitted to the Committee on the Rights of the Child for it to consider when it next examines the UK Government on its record in implementing the Convention.
Comment: This organisation provides an important illustration of how disabled and non-disabled children can work together, on equal terms, towards the shared goal of advocating respect for their human rights. It demonstrates that the aspirations of both disabled and non-disabled children coincide ­ for example, they all want the right to be heard and taken seriously, they all want more democratic schooling, they all want an end to violence against children. However, their involvement in Article 12 also serves to highlight the additional barriers that many disabled children have to cross in order to have those rights respected.
There is no lower age limit for Article 12 and it has recruited children to the steering committee who are as young as 9 years old. Its work has not only demonstrated that children of different ages and abilities can work together collaboratively and effectively, but that children, when offered the opportunity and support, can make a significant contribution towards the development of law, policy and practice as it affects their lives. However, although Article 12 has been running successfully for a number of years, it remains extremely difficult to raise the funding to sustain it.
There is considerable adult resistance to accepting that children are capable of managing their own organisation, despite the evidence to the contrary, and the children have to battle against continuing prejudice from funders.
"Some people may think, you know, well, I'm not independent because I can't do it for myself. I can't go to town for myself. I don't see independent living that way. I
see independent living as I make the decisions."
Supporting parents to promote disabled children's rights
Zimbabwe Downs Children Association, Zimbabwe 7
The Zimbabwe Downs Association is a parent to parent organisation established in
1990 to provide information and assistance on a variety of issues, such as coming to terms with emotional turmoil following the birth of a Downs Syndrome child, problems with education, feeding, and practical care. The Association has started a
Learning Centre in Harare and a public awareness programme is paving the way for greater understanding and involvement of the community in problems experienced by children. It is hoped that support and liaison, together with funding programmes for various projects, will make the children's future far more independent and

50 satisfying than has been the case in the past.
The Association is an active member of the Zimbabwe Federation of Disabled People and works with the other members for rights for all disabled adults and children in
Zimbabwe.
Comment: Parents can feel totally isolated when they have a disabled child. It can be very difficult to obtain accurate information both about the child's condition, prognosis, and potential. It can be even harder to access the practical support necessary to protect the child's rights to optimum development. This project, designed to empower parents through support and information, has enabled them to solve problems together and to take responsibility for determining where and when to seek professional help. It has encouraged community support and understanding and provides real potential for enhancing the quality of the lives of children involved at very low cost.
Community Based Rehabilitation, Kenya 8
The shanty town of Matari Valley, in Nairobi, Kenya, contains hundreds of thousands of single mothers, who survive by brewing illegal liquor, selling their bodies, begging and picking through rubbish. A large number of their children are disabled. Many mothers leave their disabled child shut up all day, sweltering in tarpaper shacks, not by choice, but in their efforts to earn money to feed their children.
A CBR worker, who went there, found the first concern of mothers with disabled children was not rehabilitation, but food, sickness and survival. In response, she looked for ways to help the mothers earn more in their home, so that they could spend more time with their children. She also organised child-care co-operatives, so that they could take turns caring for one another's children, while spending more time seeking work. Once the mothers were earning more, they could feed their children better and spend more time with them. So early stimulation, developmental activities were introduced to child-care groups. Mothers were trained as facilitators and neighbourhood rehabilitation assistants.
As day-to-day survival become less of a struggle, the mothers were able to devote more time to assisting their disabled children. They were taught exercises and activities they could do in the home, to help their children learn skills and become more independent, as well as helping them access aids and services. As the mothers saw improvements in their children, their confidence grew in themselves and the potential of their children. Eventually the mothers, with help of neighbours, built a community centre for meetings, rehabilitation, skills training, income generation, games and awareness raising skills and childcare. The women also built a co-

51 operative bakery. The initiative for disabled children became a spearhead for community development.
Comment: This project approached the problem indirectly. By helping the mothers to find work that could be done at home backed up by access to child-care, the mothers themselves were enabled to provide better care for their children. It drew on the value of shared support and collaboration. Ultimately a project designed to provide improved care for disabled children served to benefit the whole community.
Network for The Needs of Children with Disability (Perak), Malaysia 9
The Network is an informal support group comprising parents and professionals who assess the needs of disabled children. In December 1995, the Network produced a booklet on the rights and needs of children with disability. It was launched by parents, professionals, government and non-government agencies. The booklet, a statement on the 'Rights and Needs of Children with Disabilities' was produced because it was recognised that there was a need for guidelines for parents who want to assist their children. Among other things, the booklet highlights key aspects in the rights of children and covers children with sensory, physical and intellectual impairments. The booklet empowers parents to chart theirs and their children's directions and, in the process, decide what is best for them.
The Network also organised a mass registration of disabled children for the Welfare and Education Departments. The registration was partly to provide the government with statistics so it could justify the need for more services for disabled children and provide an opportunity for informing parents of benefits available to them and their children such as education, vocational training and financial allowances. The event was organised to make registration a one stop process that was streamlined and easy for parents to follow, so as to encourage more parents to register their children, particularly those who in the past had been put off by the bureaucracy and ignorance.
Comment: This represented a joint effort by parents, NGOs, professionals and government to promote rights of disabled children and help their families. It acknowledged the extent to which lack of information disempowers parents and renders them unable to take control of decisions affecting their children. In future it would also be valuable to include disabled children as contributors to the project, as their experience and views may not always coincide with those of other adults and they would be able to add an invaluable dimension.
Challenging poverty

52
RESCU, Zimbabwe 10
RESCU was started 30 years ago by parents of intellectually impaired children, to provide employment for young men and women, unable to gain employment elsewhere. Since 1988 these workshops have manufactured wheelchairs and other technical aids and sold them to a rapidly expanding market. RESCU employs 70 disabled people. All earn slightly above the minimum wage. Two thirds have intellectual impairments; the rest have physical or sensory impairments. There are seven instructors who are disabled people. RESCU employs a number of homeless, disabled people who live in a hostel that it owns. The workshop is run as a commercial concern.
Comment: This initiative tackles poverty and unemployment by engaging with young disabled people themselves to take action to address their difficulties. It empowers disabled people, particularly those with intellectual impairments, it provides accessible housing and promotes a self-help ethos. It demonstrates the capacity of intellectually impaired young people to make an economic contribution and is a model that could easily be replicated to offer opportunity to a much wider group of disabled youth and adults.
Promoting inclusive education
Ghanian CBR Programme, Ghana 11
Emo, a 6 year old Ghanaian girl, had such severe difficulties speaking and learning that she was unable to properly communicate with her family, who despaired of her survival in the ordinary school system. But recently she entered a kindergarten in the capital, Accra. Now she has started making words. Emo is one of hundreds of children and adults who have been reached by Ghana's Community Based
Rehabilitation Programme(CBRP), launched in 1992 to improve the quality of life of
Ghana's many disabled children and adults. Despite (or because of) limited funds, it has found innovative ways to motivate parents and communities and created meaningful educational, vocational and social opportunities for disabled people in the countries remote and impoverished rural areas.
The Ghana programme has already reached dozens of communities across the country. To prepare them for their work, members of the mission - mobile teachers and district social welfare workers - were given three months training. The mobile teachers were provided with motorcycles and a World Health Organisation manual and sent out to select communities. These communities then set up CBR committees,

53 made up of a cross-section of disabled people and family members. An inter-agency partnership, Ghana's project draws on technical support from the Ministries of
Employment, Social Welfare and Health, as well as from two Nordic NGO's, and various UN agencies. Its strength lies in the Government's commitment, the solid preparation of staff and the willingness of the communities to ensure their full participation.
The programme has brought special education to communities, but also changed the attitudes of regular schools, making them more receptive to including children with special needs. In Ghana's rural communities, a major obstacle to the integration of disabled children into regular schools is the geographic distance between communities and school. This prevents disabled children from attending. Recently the communities participating in Ghana's programme have begun to design and implement their own schemes to include disabled children in regular schools. One community in the Volta region, for example, has, through self-help, put up its own school building. Another is encouraging more contact between disabled and nondisabled children by building a playground with function-training aids.
A series of rehabilitation training programmes were designed to make specialist teachers more attentive to a broader range of impairments and to help regular teachers include disabled children in the mainstream school. Reaching pre-school disabled children has been another objective of the programme. Since inclusive schooling will only be meaningful to parents if they can expect their children as adults to participate in community life, the long-term integration of disabled people into their communities is the programme's ultimate goal. Creating job opportunities has helped disabled people make an active and visible contribution to their communities. Inspired by CBRP's example, many rural communities are beginning to generate such activities on their own initiative.
Comment: The programme has offered support for the poorest disabled people in rural communities Whilst strongly supported by the Government and trained workers, it has inspired local communities to solve their own problems, working collaboratively with relevant agencies to achieve their goals. The recognition of the need to generate long-term strategies young disabled people to enable them to acquire economic independence and self-sufficiency has been an additional strength of the programme. Its success is evidence by the fact that it is now being replicated by example in other communities.
Divine Light Trust, India 12
The Divine Light Trust was set up in the 1950s as a school for blind children. After 35 years, its director, Father Cutinha was shocked to discover that in India, only 5 % of

54 blind children were being educated in schools for blind people, despite the best efforts of the government and NGOs. As his school could only take 8­10 new pupils a year, the problem was not getting any better.
Accordingly, Father Cutinha decided to change the emphasis of the school. Without increasing the number of staff or the budget, the school now reaches practically the whole of India. The difference is that instead of being run as a school, it is now a resource centre, training teachers in mainstream schools to integrate blind children in to their schools.
Comment: This example illustrates the economic cost effectiveness of inclusion as opposed to segregated education. It demonstrates an efficient use of limited resources for maximum output. Far more blind children are now receiving locally based education that is appropriate to their needs, ending exclusion and allowing them to remain included in their families and communities.
One School for All, Nicaragua
The Ministry of Education, Culture and Sports of Nicaragua launched a project at the end of 1998 as part of UNESCO's Inclusive Schools and Community Support
Programme. The project aimed to explore the development of inclusive practices in three public elementary schools in Managua and Leon. The programme supports these schools to adopt a culture of reflective inquiry, collaboration and training to enable them to respond to diversity and for overall school and teacher improvement.
'A wonderful and unexpected gain has been that after the first training workshop, the head teachers were so sensitised, that they immediately included into their schools a few children with disabilities from the neighbourhood. This is particularly important
since there is no policy or law to support inclusive education'.
From September 1999, selected schools have started a project to support technical assistance from a government organisation, CISAS 'Centro de Informacion y Servico de Asesoria en Salud' and with financial help from Radda Barnen - Sweden.
Teachers, from selected pilot mainstream schools and from a special school, have been trained on the child-to-child approach as a means to support the development of inclusive schooling. Children who have had experience of child to child gave a workshop to children from the selected schools. These children will be a catalyst for change in attitudes in their schools and communities towards people with disabilities.
In addition the programme has just started a radio programme named Child to Child on Air where children with different impairments express their concerns, dreams and projects.

55
Comment: This project draws much of its strength from involving disabled children as advocates to encourage children to help each other and become agents of change in their communities.
It has demonstrated not only that it is possible to change attitudes but that it is also possible to get schools to change their practice once they have seen the potential of inclusive education. The opportunity for disabled children to have access to the media and thereby to have a platform through which to articulate their experiences is as valuable as it is unusual.
ADD/Save the Children, Mali 13
In 1997, Save the Children set up a consultation process with government, donors,
NGOs and village communities with the aim of making schooling more accessible to children in Douentza, the poorest district within Mali where there are only 17 schools in 255 villages and only 8% of children attend school.
The consultation process initiated by SCF revealed that 70% of children and adults would prefer a different future to that of their parents. Without a school education the children have very little chance of escaping a lifetime of rural poverty. School committees were formed and trained. Ordinary people from the local community were selected as teachers. Villagers adapted school curriculum and materials in order to reflect the experience of village children. The community agreed to build two classrooms in the first year and one each year until there were six. The appointment of a woman on each management committee, who has sole responsibility for the recruitment of girls and disabled children has ensured the success of the equal opportunities policy.
Action on Disability and Development, an international development agency whose focus is the empowerment of disabled peoples' organisations, was involved from the beginning. Their representative visited Douzenta in early 1998 to carry out a survey and raise awareness of disability issues. This enabled the school committee to identify the disabled children of school going age who could be enrolled and ensured that a decision was made to make the inclusion of disabled children mandatory from the start. A total of 11 disabled children from 9 villages had to attend the two community schools. These included children with mobility problems, visual impairments and hearing impairments. Local theatre and music groups were used to raise awareness and change attitudes on disability.
'To begin with we had the commitment to include disabled children, but we did not really believe that they could be in school. Now we have seen for ourselves and we
have moved from commitment to conviction'

56
Comment: Because the level of access to schooling was so low for all children, it was possible to create new schools which were designed to be inclusive from the very beginning. Making inclusion mandatory ensured that it was not viewed as an
'optional extra' which could be jettisoned if any difficulties arose. The project demonstrated that inclusive education can be supported in one of the poorest areas of the world and that environmental, economic, material and attitudinal challenges can be overcome to create effective schools for all children.
National Council of Disabled Persons of Zimbabwe's Education Programme
(NCDPZ)
In 1988, The NCPDZ appointed an education officer whose role was to identify and meet disabled children's education needs. Because the families of many disabled children were unable to afford to get their children into school, a special fund was established to provide scholarships and sponsorship. The education officer works with the Department of Education to produce as supportive and enabling an environment as possible, and with teachers, parents and disabled people to ensure the effectiveness of the programme. As a result of the programme, around 300 children a year have been provided with scholarships to enter inclusive educational settings with appropriate aids and support. Once or twice a year, all the scholarship children come together to participate in a conference, setting their own agenda and engaging in their own discussions. One of the main functions of this process is that young disabled people are prepared for leadership through the opportunity to gain confidence, learn presentational skills, and articulate their views.
The NCDPZ has also introduce a degree course in special education for teachers in which they are taught Braille, sign language and other support mechanisms.
Graduates of the course are deployed at other teacher training colleges to train other teachers. The goal is to ensure that all Zimbabwean teachers are trained to teach all children.
Comment: The success of the programme rests in its commitment to working towards an inclusive goal with an inclusive methodology. Not only does the programme provide inclusive education for several hundred children a year who would otherwise be denied schooling, but its teacher training programme is working towards the creation of a national framework of inclusive schools, without which the right to education for the majority of disabled children will continue to be denied. The opportunity for the children to meet annually to share experiences and gain skills is an important recognition of their right to be heard, and have their views taken seriously, an opportunity likely to be unfulfilled in other arenas of their lives. The commitment to working not only with children, but also parents, teachers, trainers and education departments strengthens the capacity to develop community-based,

57 effective and enduring outcomes.
PROJIMO, Mexico 14 - (see Projimo, Mexico 16 )
In Jan 1995, PROJIMO ran a workshop on small community problems. It was held outside under a large tree. One afternoon the work was interrupted by a young boy,
Jesus, who rolled up in his wheelchair and declared, 'I'm not going to school.' Asked why by one of the coordinators he replied 'because the teacher is mean and when I ask her what is written on the blackboard, she gets angry and says I'm disrupting the class. I've told her I can't see, but its like she doesn't believe me and she treats
me like it’s my fault'.
Jesus is 13 with multiple impairments, including very poor vision. He is bright and, despite his visual impairment, has learned quickly. Shortly after starting school he was put up to the second grade, but the second grade teacher had little understanding of his needs. Unable to read either the blackboard or his books, he grew discouraged.
One of the participants in the workshop suggested using child-to-child activities with the children, to help both his classmates and the teacher understand Jesus' problem and the best way to work to assist him. The worker, herself blind, wanted to explore with them what it was like to be blind or partially sighted like Jesus. The children role-played, taking it in turns to be blind or visually impaired and teachers. After the role-play another 'pretend' teacher asked Jesus to read a word on the board. Jesus rolled forward and, to read the word, had to lift himself up so that his face almost touched the work. After seeing the difficulty Jesus had reading from the board and from books, the worker asked the children to think of ways 'you, Jesus' classmates,
can help him with his lessons', The children came up with a wide range of suggestions such as:
 Make sure Jesus sits at the front of the class
 Write and draw large on the board
 Our teacher or one of us should always read out loud what has been written
 We could record the lessons in his books
 When we take exams Jesus could whisper the answers into the teacher's ear
The worker also said that Jesus could learn to read with his fingers and showed the children Braille paper. After this Jesus decided to stay in school, the teacher agreed to let Jesus sit next to her and a number of his classmates began helping him with homework. One, who is also disabled, offered to help tape his lessons.
Comment: This experience enabled the children to learn more than the formal content of their lesson ­ they were able to enjoy bridging barriers to understanding,

58 creative problem solving and helping one another. The outcome was greater understanding, a commitment to inclusion and a preparedness to adapt to achieve a more inclusive approach. Hopefully, the lessons learned will be applied to other disabled children in the community.
Inclusion International, Benin 15
Inclusion International, in collaboration with a national CBR programme, promoted the inclusion of several children with intellectual disabilities in classes for nondisabled children in numerous areas of Benin. Thanks to the sensitivity and the willingness of the different partners and despite overcrowding in some classes and absence of specific training of teachers, the experience is developing and bearing fruit. The most spectacular example is an autistic child who passed his primary school certificate and is now at private college to pursue 6th year. The child did not speak before coming to the school complex. There is also the case of a child in mainstream schooling who has cerebral palsy with significant motor problems and who was one of the best students in the class.
In collaboration with UNESCO, the government of Benin and Federation of
Associations of Persons with Disabilities of Benin, including the Inclusion national organisation, Association Beninoise pour Handicaps Mentaux, are currently setting up a project called 'Inclusive Schools' whose objective is the inclusion of disabled children in all schools.
Comment: The programme has demonstrated the capacity of disabled children to achieve success once the opportunities are made available. Experiencing the direct evidence of progress and attainment is an effective route towards challenging traditional prejudices against disability. The programme was strengthened by the partnerships between the local NGO, the Government and UNESCO and has led to a nationwide programme, building on the initial experience.
Promoting social inclusion
PROJIMO, Mexico 16
PROJIMO was started in 1965 in the mountains of western Mexico. It is now providing a haven for physically and socially damaged young adults, many with spinal cord injuries, resulting from Mexico's expanding subculture of drugs and violence. It is the last stop for many families who have spent months and most of their money seeking treatment and rehabilitation. They have no where else to go.
PROJIMO provides an alternative, a programme run by and for disabled people.
Disabled children and adults see other disabled people managing their rehabilitation,

59 see them working, supporting their families and are given renewed hope. The
PROJIMO grassroots, self-help approach serves as an inspiration and model for groups of disabled people, parents and health workers worldwide.
It runs formal and intensive courses, covering issues such as wheelchair building, disability rights, sexuality and administration. David Werner, the disabled founder, produced a manual, 'Disabled Village Children', from his experiences, whose format allows it to be used by those with little formal education. It is now used worldwide, along with later manuals: 'Where there is no Doctor' and 'Nothing About us Without
Us'. The project is now run by two women with spinal cord injuries - unusual in such a 'macho' society.
Comment: The project grew out of and is linked to a villager-run primary healthcare programme which was started and run by and for disabled people. The villagers define the issues and discover the solutions. Its strength is in helping families stay together and promoting an ethos of self-help. Furthermore, not only is it run by disabled people themselves, but encourages cross impairment support, involves the poorest families and provides women with key roles in an otherwise male- dominated society.
Projimo's influence has produced other excellent social inclusion
programmes:
Brazil 17
During a CBR course run by PROJIMO, it became clear that there was a major problem at a hostel for children with multiple impairments, at which the course was run. The children were starving because they did not have enough attendants to feed them. A solution became possible. Next to the hostel for the children with multiple impairments was a government hostel for abandoned children with mild learning difficulties. Here the girls are cared for in small group homes and taught to be as self sufficient as possible, some attending local schools and learning work skills. However finding employment is difficult and, because many of the girls have nowhere else to go, they continue living in the hostel, with little direction or purpose. The young women needed activities to give them a sense of worth. It was decided to invite the some of the girls for training to help look after the severely disabled children at the neighbouring hostel. Much of the care needed required more time than skill. A physiotherapist at the hostel agreed to work with the girls and teach them how to hold, feed and help the children begin to develop body control.
South Africa

60
A workshop was organised with 32 adults and 21 children from a low-income resettlement area to explore the lives of disabled children. The workshop involved social workers and educators, working and learning with children about the problems that the children themselves defined. The children, who were initially terrified to speak out, gained confidence at expressing themselves. The children started with their own community diagnosis through learning games, that included drawing pictures and listing what they saw as the major difficulties affecting their own and their family lives. After listing the problems, the children used small cut out figures
(faces, skulls, arrows etc.), to analyse which problems were most important in their community and how they interrelated. On the last day of the course children returned to their school, where they led activities in five different classrooms, presenting their ideas through actions, games, posters, songs and skits that they had designed around their identified concerns.
Philippines 18
In a very poor tribal area in the southern island of Mindanao, three girls with brittle bone disease live. They cannot walk and remained sitting on the elevated bamboo floor in their home, isolated from other children and alone. Rosalie had developed a chronic cough and looked ill. A major concern of the girl's parents was their isolation.
The mother of another disabled girl volunteered to start a child-to-child project, helping the villagers to understand the difficulties of the three sisters and to look forward to including them in games they could safely play.
A PROJIMO worker knew of a girl in Mexico with a similar condition - Virginia - who is also from a poor family, but through PROJIMO, has had various forms of assistance.
Virginia is now 17 and finishing secondary school and is determined to study to become a secretary. In order that the three sisters in Mindanao and Virginia in
Mexico feel less isolated, share their experiences and become long distance friends, it has been arranged that the girls become pen-pals, writing to each other (through interpreters) and exchanging drawings and photos. This interchange is of particular value to the sisters. Being able to correspond with a girl, with a similar experiences, though in a different land and culture, helps to extend their horizons, and give them courage to make something of their lives, just as Virginia is doing.
THAILAND 19
A low cost rehabilitation playground in a refugee camp had a wide range of bamboo equipment for children to play on, but there were no children in the playground. It was surrounded by high fences with a locked gate - the reason, explained the manager, was that local non-disabled children constantly broke in and broke the equipment. So local kids were locked out, but so were disabled children. To avoid

61 such a problem in their own playground, PROJIMO invited local school children to help build and maintain a playground, with the agreement that they could play there too. The playground has led to an active integration of disabled and non- disabled children. The idea has spread to other villages.
Comment: The children in all these projects were offered wider opportunities through social contacts. Through efforts to engage them more with non-disabled children and to the lives of other disabled children in different cultures and environments, the children were afforded wider aspirations and new experiences and given greater opportunities for inclusion.
India 20
In India, access to wheelchairs and other mobility devices for disabled people, particularly women in rural areas, is a significant challenge. It is estimated that four million people in India require mobility devices, but production is limited to only
20,000 per year. Wheelchairs donated by western countries are inappropriate to the rugged terrain. In an attempt to find a solution, a team of Indian and Canadian designers and therapists, with the assistance of ten disabled women and girls, chose to design a more appropriate, inexpensive, locally built mobility device that would promote maximum mobility on rough terrain and enhance participation in every day tasks. With the input of the disabled women and girls, it was decided that the device should be strong, light and designed for ground level use on hard surfaces. It should have flexible seating options, hand rims on wheels, be aesthetically pleasing, cost less than 1,000 rupees ($40), be made from local materials and maintained at village level. The finished product meets the functional, technical and cultural needs of women and represents an alternative for women and girls with mobility difficulties in India.
Comment: The project focused on an issue of significance to many millions of disabled people in India. Using the expertise of disabled women and girls themselves, the process was empowering and the outcome was a culturally and functionally appropriate product of immense value to their lives.
SCF, MOROCCO 21
Morocco has been undergoing huge social change in recent years. 100 million people have moved from the villages to the cities - the effect was to severely weaken the traditional structures that helped protect and support the most vulnerable people. A spokesperson for local disabled people's organisations said 'In terms of social integration and community acceptance of disabled people, we are probably worse off
today than 100 years ago'.

62
In the early 1990s SCF decided to change its disability focus away from institutional support towards CBR, with the emphasis on local participation and community ownership of projects. This has been beneficial for parents and children but produces a challenge to SCF because of Morocco's social and economic changes.
In the light of these changes, SCF developed a CBR programme in Khemisset, a small town in a largely rural area, the first of its kind in Morocco. The project takes the form of a day centre, situated in an ordinary house, which aims to meet some of the expressed needs of families in the area. It runs play groups and teaches mothers ways to help their children through exercises and play. It also runs special classes for disabled children who have been rejected from mainstream schools. The central belief of the project is that responsibility for the development of their children does not rest with the government or overseas aid agencies, but with the family and wider community, This return of responsibility to the family, is a new departure in the field of disability in Morocco, but is welcomed by mothers.
The project also aims to address wider issues of disability in the community, such as access to education, transport, health care and employment, as well as social attitudes. However it has been recognised that there is a need to move cautiously here, first with the language it uses to promote disability rights and the way it encourages community ownership and participation. To ensure success, they have had to build up support and contacts with the government and community as a whole. Many women in society still need permission from men to undertake activities outside the home. Some parents still request services and equipment in the belief that the project is there to take responsibility for their disabled children. Despite this many families are beginning to see the centre as their own and to realise that disabled people have the same rights as others.
Comment: The project identified the shortcomings of existing services and gave power back to the families through an emphasis on the social rather than the medical model of disability. Importantly, it encourages the involvement of the whole community and promotes inclusive education and other issues of social inclusion such as transport. Difficulties remain, however. Some men are suspicious of the centre and are reluctant to give their wives permission to visit and it has proved difficult to form a disability committee that is truly representative of parents and of disabled people.
"Loneliness dominated the life of Ramadhani, son of a peasant. For him life meant staying indoors. Occasionally, he sat or lay outside his home watching other children on their way to and from school. While they ran up and down playing different games, Rama played the role of spectator. The launching of the CBR programme marked the start of a fresh drive to liberate Rama from the world of loneliness. With

63 the help of the CBR workers, fresh efforts were made to help Rama stand up and move. After weeks of concentrated rehabilitation, Rama managed to stand up with the help of parallel bars which were locally made. Today, Rama is an active participant in the day-to-day activities of his home and surroundings, He walks three
kilometres up and down to school, either alone or in the company of colleagues."
Challenging prejudice and promoting positive attitudes towards disability
Sesame Street, US 22
A new character was introduced during Sesame Street's 25th television season. She is a nine year old called Tarah Lynn Schaeffer who uses a wheelchair. In one show,
Tarah shows what is involved in training for wheelchair sports. Her friends exercise with her and help her strengthen her arms for the race. She demonstrates how she practices for speed through the difficult obstacle course. The audience also gets to see a home video tape of Tarah in a race, trophies included.
The executive producer explains that the show decided to make Tarah a full-time cast member to give viewers an opportunity to know her as a friend and understand the challenges of her day to day life, as well as be a realistic role model for other children. 'On Sesame Street we try to give all children a positive sense of themselves and show that children who look different such as skin colour, ethnic type or children with disabilities have much in common with other children in their needs, their interests and their feelings. The message is its OK to be different'. The producer and director of research stated that some scripts call for Tarah to discuss her disability while others just treat her as part of the cast. 'Being on Sesame Street is fun' Tarah
explained 'I like all my friends there'.
Comment: There are very few positive images of disabled children on television.
Sesame is a popular and widely viewed programme which offers high level exposure to the issues it raises. One particular value of this character is that she is not there just to talk about disability, but is a member of the cast demonstrating the
'ordinariness' of the concerns of disabled children and their comparability with those of non-disabled children.
BREAKING BARRIERS, PHILIPPINES PROJECT 23
Kampi is a vibrant, well performing and credible organisation of disabled people. It operates stimulation and therapeutic activity centres which provide free comprehensive rehabilitation services to poor, severely disabled Filipino children in five regions in the Philippines. By June 1998 the centres had served 1,509 children, with the aim of reaching a total of 2,000 within the next 12 months.

64
Breaking Barriers has been a showcase on how disabled people can be empowered to provide comprehensive rehabilitation services to help their colleagues. It has convinced authorities in the Philippines that disabled people can be agents of social change and providers, rather than mere users, of services. The Government is now a partner with Kampi in the programme. As a result of the success of the project, a more challenging, second phase of Breaking Barriers for Children has been planned, with wider coverage.
Comment: One of the strengths of the project is that Kampi is an organisation run by and for disabled people. By creating opportunities for disabled adults to teach disabled children, it provides them with positive role models that are generally not available.
Respecting cultural rights
NATIONAL ASSOCIATION OF THE DEAF, Zambia 24
The Zambian National Association of the Deaf (ZNAD) was established in 1981 and is controlled by Deaf people. Since it launched its Zambian Sign Language Programme in 1989, it has expanded to teaching Sign Language to interpreters, teachers, parents of deaf children, deaf pre-school children and community service providers, such as drivers, secretaries, police officers and hospital staff, who come into contact with deaf people. ZNAD has carried out sign language research and has just published a national sign language dictionary. Two goals of the Programme are for the formation of a Sign Language Department at the University of Zambia and acceptance of sign as an official language.
Comment: The programme promotes a whole community approach to deaf people - including children and adults, as well as teachers and service providers. It recognises and promotes the right of deaf people to communicate in their own language and thereby empowers them through better communication among themselves and with the rest of the community. There is now greater recognition of sign language as an indigenous language which will help inclusion of deaf children now and in later life.
The programme is an initiative of deaf people, but one supported by professionals.
CAMBODIAN DISABLED PEOPLES ORGANISATION (cdpo), Cambodia 25
It is estimated there are between 10,000 and 13,000 deaf people in Cambodia. The incidence is higher than in industrial countries because of poor health care and years of war. Cambodia had no association of the deaf. A few deaf students went to hearing schools but they had problems following the teachers' speech. Learning was difficult and hearing schoolmates harassed them. Parents of deaf children, like the

65 public, were poorly informed about deafness and sign language. Some parents were superstitious, believing their deaf child was born due to bad luck, or as a punishment for past misdeeds.
Many deaf children and adults communicate by home-made sign language which has sprung up naturally. CDPO set up meetings for deaf children and adults once a week, to encourage them to socialise and develop a Khmer Sign Language. In the beginning, deaf people not familiar with sign language were very passive. They had never met other deaf people and were confused. After several meetings, they started to imitate the Khmer signs used by the smaller group and they quickly became more active and motivated to learn signs, developing language skills with dramatic speed.
CDPO is now developing a long-term Deaf Development programme for Cambodia, training deaf people as sign language teachers. There will also be support for deaf people in their vocational training programmes and efforts to gain access to the labour market. Deaf leaders lead deaf children's groups so that they meet deaf adults who serve as role models. A school for deaf children was opened in Phnom
Penh in 1997 and deaf children go on from there to mainstream school, where teachers receive support from CDPO.
Comment: This programme has resulted in the development of a national sign language which has aided social interaction, access to education and provided support for parents and their deaf children. The programme has also been characterised by deaf people providing the training to others and acting as positive role models.
Promoting the right to play, recreation and culture
SPASTN, INDIA 26
In many countries today children are fascinated by Karate and eager to learn it.
SPASTN have developed an innovative programme in S.E. India, where disabled children are taught Karate. They take it very seriously and their volunteer teachers - professional Karate instructors - take the children and their learning seriously. Karate is a physical art, which teaches self-mastery of body and mind as well as a philosophy of harmony and non-aggressive, self-defence. Its guided, rhythmic movements, conform with many of the movements and positioning used by professional therapists.
Seeing the children proudly demonstrate their Karate skills, is a revelation even to those who routinely work with disabled children. When the children are challenged with an activity they passionately want and choose to do, it is astonishing what they

66 can accomplish. It stretches the boundaries of what therapists, parents and children themselves, dream is possible. Better co- ordination, greater sense of personal adequacy, self image, feeling of fulfilment and more self- confidence are just some of the observable benefits.
Comment: This initiative promotes an activity on which the children are very keen but which also has considerable therapeutic value. It allows the children to have fun playing whilst gaining a wide range of new skills.
DEAF WELFARE ASSOCIATION, PAKISTAN 27
Youth members of the Karachi Deaf Welfare Association have been given computers in their club to give them an opportunity to learn computer skills. They are also receiving help from the governor of Karachi, to promote sports and to establish a
Special People's Park, where they can participate in sports and meet other young people. The club promotes arts, crafts and sign language. All the deaf youth are now learning English and some have found good jobs. The group is working to raise awareness of their needs and goals, through the media and holding parent seminars, to educate parents about the fast developing world and the needs of young deaf people.
Comment : Young people are enabled to help themselves meet their own needs and are offered real opportunities for social integration. It is important to recognise not only that disabled young people have a right to education and employment opportunities, but also to the play, culture and recreation offered in this project.
ALBANIAN PARAPLEGIC ASSOCIATION (APA), ALBANIA 28
The Albanian Paraplegic Association is an NGO founded by a group of disabled people. After four years a satellite group in Shkoder was started, initially with a group of children with learning impairments at a special school. APA realised that the children's impairments did not diminish their artistic skills and that such skills could be acquired much quicker than learning any other subject. It therefore decided to prioritise opportunities for creativity and, in 1989, the children first put on a stage production of their favourite fairy tale. In 1990, after the first success, the children started to demand more from themselves and the need arose to have a more complete group which would fit their needs as well as those of parents, teachers and community itself. Thus an artistic group was established consisting of singers, dancers, and instrument players.
This group began to give concerts in schools, kindergartens, orphanages and hospitals, improving in artistic quality as it progressed. Throughout 1992, local radio

67 continued to advertise the activities of the group and the group became bigger and more proficient. In 1993, it gave its first big concert performed at the children's culture centre with an audience of parents, teachers, doctors and representatives of local government. The performance received local and national media coverage.
Publicity about the group inspired and gave hope to other disabled people in Albania.
The 'isolation curtain' was torn down and they became an inseparable part of the community and other disabled people with a variety of impairments joined them.
From the inspiration given by the artistic group, other activities developed - and members of local government and professions got involved. Further activities included a camping trip for disabled children. The group in Shkodra, now officially part of APA, developed a wide range of activities for disabled children and adults culminating in a concert at the National Ballet Theatre in Tirana, on the International
Day of Disabled Persons, 1996.
Comment: The qualities and strengths of a group of children with learning impairments provided artistic pleasure to the local community, demonstrating the contribution they can make once offered the opportunity. Disabled children are normally not only denied the chance to participate in the arts but are widely denied any access to them. This project broke new ground in challenging traditional barriers and enabling the children to provide a spring-board for a much wider development of services for disabled people and they played a significant role in the strengthening of the disability movement in Albania.
"I cannot listen to the radio, I cannot watch television without understanding what is broadcasted. I cannot attend several government campaigns and many more just
because I cannot hear."
Implementing structures and policies to respect the rights of disabled children
1996 children's statute and universal primary education, UGANDA 29
The Children's Statute protects the rights of disabled children in the provision of health, education and community care services. The Act put responsibility on local councils to identify and assess the needs of disabled children in their area of jurisdiction. Children's right to education is spelt out in Uganda's Universal Primary
Education (UPE) policy, begun in 1996. It is the brain child of President Yoweri
Museveni, who believes in the transformation and modernisation of society through the elimination of illiteracy and provision of Education For All. In practice the UPE is not yet universal, but is moving in the right direction. Before implementation the policy was extensively discussed at various forums, including educational institutions.

68
Under the programme, the government commits itself to providing primary education for a maximum of 4 children per family with affirmative action for marginalised groups. Two of the four must be girls. Since 1996 the enrolment of girls with disabilities has tripled.
The programme has brought to light the enormous challenges of providing education for all and the special challenges of providing education to disabled children and resulted in the UNISE Act 1998, which provides training for special needs education teachers for disabled children. It has reduced illiteracy rates - particularly among disabled children. It has also increased awareness of the educational needs of disabled children such as the need for sign language. Efforts are being made to construct special units within mainstream schools to meet the special educational needs of children. The Ministry of Education has already issued a directive on ensuring physical accessibility for children with disabilities in the construction of new buildings and there is now a recognition of the challenges such as the need for special grants for children with disabilities to enable them to acquire mobility aids and other learning materials.
Comment: There are difficulties. Special education teachers in areas such as Deaf
Education Sign Language and visual and mental impairment are inadequate and nonexistent in most schools. Class sizes are large and there is inadequate funding in many schools. However, despite some weaknesses, it has been hailed worldwide as a positive and innovative programme, a reflection of political commitment to education for all and a role model for how the poorest countries of the world can eliminate widespread illiteracy.
NIGERIAN GOVERNMENT 30
The Government of Nigeria has made a number of positive policy moves to support disabled children. It is stated in the National Policy on Education that all children must be provided for in the system and that specific educational arrangements must be made for disabled and gifted children. Inclusion is put forward as the most realistic form of education for disabled children, and special classes and units are to be provided within regular schools. Special schools however, where necessary, may also be established for disabled children. Recognition is given to the need for a variety of educational arrangements for disabled children; for a census and for cooperation among the various ministries, along with the national council on special education. All teachers are now to receive training in special education. The trend towards segregating disabled children should be reversed and it will be realised that only by educating them in their own communities will they best be able to achieve an inclusive life style.

69
Comment: The Government policy that recognises the importance and value of inclusive education with the development of special classes and units for these children in ordinary schools where appropriate. However, not only has the
Government introduced the policy but it has sought to implement it through providing training for teachers and establishing a goal of achieving inclusive education.
SOUTH AFRICA GOVERNMENT 31
The South African Government has made significant progress in its commitment to disabled children's rights. It has prohibited discrimination against disabled children
(and adults ) in its constitution and made provision for the recognition of sign language as an official language for deaf South Africans. It has published a white paper on the integrated National Disability Strategy, which provides government at all levels with a clear framework on how to integrate disability into all policies and programmes. The Department of Health has prioritised the eradication of preventable childhood illness, which lead to disability, such as measles and polio.
The Department of Education has committed itself to removal of barriers, to learning and development, to facilitate full participation of learners with disabilities. The SA
Schools Act, recognises the right of deaf learners to learn through the medium of sign language and for all disabled learners to be given first preference of learning in local, ordinary schools.
Comment: The South African Government has expressed a strong commitment to supporting disabled people and children, backed up by a programme of action on the part of a number of government departments. The high profile given to these issues by the Government gives them status and provides a clear challenge to the traditional marginalisation of disabled people and the violation of their rights.
CHILDREN'S BUDGET PROJECT, SOUTH AFRICA 32
Budgetary programmes affect the well-being and life opportunities of children directly and it is therefore important to have a detailed assessment of what government is spending on children to establish an effective improvement of basic living standards of children. Children do not form a powerful political lobby and therefore cannot advocate for themselves for more effective delivery of socioeconomic services that meet their needs.
Accordingly, the NGO sector of South Africa has launched a project called the
Children's Budget, to monitor government spending on children. It is an attempt to examine what resources government is allocating to programmes that benefit

70 children, and whether these programmes adequately reflect children's needs. One member of the project observed, 'The question is not whether we can or cannot afford disability sensitive services and programmes, but rather what are the consequences and cost to the economy, by not proactively including and making
planning provisions to meet the needs of all, including children with disabilities'.
Comment: The Committee on the Rights of the Child has consistently pressed governments to break down budgets in order to identify the proportion of expenditure being directed at children. This project offers an opportunity to highlight and monitor government spending and policy on disabled children.

71
APPENDIX I
Recommendations of the Committee on the Rights of the Child
General Discussion on the Rights of Children with Disabilities
On the basis of the discussions on the various issues, the following recommendations were formulated by the Chairperson of the Committee following the General
Discussion held on 6 October 1997:
1 In its examination of States parties reports, the Committee should commit itself to highlighting the situation of disabled children, and the need for concrete measures to ensure recognition of their rights, including in particular the right to life and maximum survival and development, the right to social inclusion and to participation; it will also emphasize that adequate monitoring of the situation of disabled children in all States must be undertaken and encourage moves to promote the collection of statistics and other information to enable constructive comparisons between regions and States;
2 The possibility of drafting an early General Comment on disabled children should be considered by the Committee;
3 The various bodies providing information to the Committee in the course of the reporting process should ensure that the information they provide to the Committee includes the perspective of disabled children;
4 There is a need for States to review and amend persisting laws in many countries affecting disabled children which are not compatible with the principles and provisions of the Convention, for example legislation:
 Which denies disabled children an equal right to life, survival and development (including in those States which allow discriminatory laws on abortion affecting disabled children, and discriminatory access to health services);
 Which denies disabled children the right to education;
 Which compulsorily segregates disabled children in separate institutions for care, treatment or education;
5 There is a need for States to actively challenge attitudes and practices which discriminate against disabled children and deny them equal opportunities to rights guaranteed by the Convention, including infanticide, traditional practices prejudicial

72 to health and development, superstition, perception of disability as tragedy;
6 In view of the appalling impact of armed conflict in causing disability of hundreds of thousands of children, States should be encouraged to ratify the Convention on the Prohibition of the Production, Use, Stockpiling and Transfer of Anti-personnel
Mines and on their Destruction, due to be opened for signature in Ottawa in
December 1997;
7 The Committee should promote the Standard Rules on the Equalization of
Opportunities for Persons with Disabilities as providing relevant standards for implementation of the Convention on the Rights of the Child and strengthen its cooperation with the Special Rapporteur on Disabilities and his Panel of Experts;
8 The Committee, in cooperation with UNESCO, UNICEF and other relevant agencies, should ensure that inclusive education is included on the agendas of meetings, conferences and seminars as an integral part of education debate;
9 Relevant agencies should be encouraged to develop programmes which promote alternatives to institutionalization and to develop and promote strategies to de- institutionalize children;
10 The rights and interests of disabled children should be included on the agenda of multi and bilateral agencies, development agencies, donor agencies, funding organizations, such as the World Bank and regional banks as well as technical cooperation agencies;
11 Research into the provision of statistics and empirical evidence should be promoted with a view to: a) Promote awareness of the extent to which the right to life of disabled children is denied; b) Challenge the widespread existence of superstition, prejudice, social stigma and denial of access to education in relation to disabled children; c) Challenge the argument of "cost effectiveness" used to marginalize disabled children and evaluate the costs of exclusion and lost opportunities; d) Encourage the prominence of the issue in the production and discussion of bioethical conventions;
12 The development of research with disabled children should be encouraged on

73 methods of undertaking consultation, involving them in decision-making, and giving them greater control over their lives and promote dissemination and sharing of good practices, backed up by preparation of training materials;
13 Governments should be encouraged to make these materials available at community level in appropriate forms for children and disabled people - this could potentially be undertaken by one of the development agencies such as the Swedish organization of Handicapped International Aid Foundation (SHIA) or Save the
Children, in collaboration with some of the disabled people's organizations;
14 There is a need to produce training materials on promoting participation of disabled children. In addition, the UNICEF International Child Development Centre
(Innocenti Centre) should be requested to produce an edition in its series of information digests on the subject of inclusion, as its contribution to the issues raised during the General Discussion.
APPENDIX II
Rights for Disabled Children
The organisations involved in Rights for Disabled Children are:
Disabled People's International
Inclusion International
Save the Children Alliance
World Blind Union
World Federation of the Deaf
The working group is chaired by Bengt Lindqvist, UN Special Rapporteur on Disability and is attended by a member of The Committee on the Rights of the Child.
The work is administered by Disability Awarenesss in Action and is funded by the
Swedish International Development Agency.
RDC ACTION PLAN
 Promote the voices of disabled children.

74
­ Gather evidence on violations of disabled children's rights and of projects of good practice to promote disabled children's rights.
­ In-depth research on the status of disabled children in one country of each region of the world.
 Work with the Committee on the Rights of the Child in monitoring country reports in relation to disabled children.
 Ensure disabled children's representation and report on their status at The UN
General Assembly Special Session on Children, 2001.
 Work with all agencies promoting the rights of children to ensure that they include disabled children.
APPENDIX III
DISABILITY AWARENESS IN ACTION
Disability Awareness in Action (DAA) was established in 1992 as a charitable company, limited by guarantee and is a collaborative project between Disabled
Peoples' International, IMPACT, Inclusion International and the World Federation of the Deaf. DAA is an international human rights network providing disabled people and their allies around the world with information enabling them to take action for themselves to promote their rights and opportunities, in accordance with the UN
Standard Rules on Equalisation of Opportunities for Persons with Disabilities.
DAA implements the philosophy that disability is a human rights issue and aims to ensure that all information is appropriate and accessible to all disabled people.
We believe that a small seed of information can achieve a groundswell of local action.
Main Activities:
Monthly Newsletter ­ Disability Tribune
Resource kits, information data and reports
Data-base on violations against disabled people
Guidance on human rights and non-discrimination laws and politics

75
Web-site and e-group management
Provision of advice and information
Provision of information to researchers, academics, the media and policy makers
Promotion of all UN and international instruments that promote rights for disabled people
Management of Rights for Disabled Children working group
Working with Pan African Federation of Disabled People in implementation of the
African Decade of Disabled People (2000­2009)
Research and information on bio-ethnical concerns, in particular as they impact on the right to life
The Violations database was started in May 2000. Since then DAA has recorded
1,285 separate reports affecting 2,038,044 disabled people. 21% of these individuals have endured a breach of Article 3 of the Universal Declaration of Human Rights ­ the right to life, liberty and security of person ­ and a further 21% have been subjected to ''torture or to cruel, inhuman and degrading treatment or punishment'.
22% of the reports concern disabled children. This is a very high number considering that children are only 2-4% of the disabled population.
Bibliography
Alderson, P, and Goodey, C, Enabling children; experiences in special and ordinary
schools, The Tufnell Press, London, 1998.
Ashagrie, K, Statistics on working children and hazardous child labour in brief,
International Labour Office, Geneva, 1997.
Bond, T, with Nguyen, T, H, The Alternative Basic Education Programme supported
by UNICEF: an assessment, UNICEF, Hanoi, 1998.
Burke, M,A, 'Children with disabilities in Central and Eastern Europe and the former
Soviet Union' in Children with disabilities and their families: A Congress Discussion
Document, 6th International Congress on Inclusion of Children with Disabilities in the
Community, Alberta, 2000.
Cavet, U, People don't understand: Children, young people and their families living

76
with a hidden disability, National Children's Bureau, London, 1998.
'Children abandoned to the Russian State', Human Rights Watch, 1998.
Children's rights: equal rights, Save the Children Alliance, London, 2000.
Committee on Economic, Social and Cultural Rights (CESCR) 'Persons with disabilities', 09/12/94 General Comment 5, HRI/GEN/1/Rev.2, New York, 1994.
Commission on Human Rights resolution 2000/85, E/CN.4/RES/2000/85, 28 April
2000.
Commission on Human Rights, 'Human Rights of Persons with Disabilities',
E/CN.4/Res/2000/51, Geneva, 2000.
Committee on the Rights of the Child, 'Report on Day of General Discussion on the
Rights of Children with Disabilities', Geneva, 1997.
Commission for Social Development, 'Report of the Special Rapporteur on monitoring the implementation of the Standard Rules on Equalisation of Opportunities for
Persons with Disabilities', A/52/56, New York, 1996.
Committee on the Rights of the Child, Report on the Seventeenth Session,
CRC/C/73, paras. 171 and 172, Geneva, 1998.
Committee on the Rights of the Child, Report on the Nineteenth Session, CRC/C/80, paras. 244 ­ 247, Geneva, 1998.
Crosse, Kaye and Ratnovski, Report on the Maltreatment of Children with Disabilities,
National Centre on Child Abuse & Neglect, Administration for children and families,
US Department of Health and Human Services, Washington, 1992.
Crossley and MacDonald, Annie's Coming Out, Penguin, Australia, 1990.
Despuoy, L, Human Rights and Disabled Persons, United Nations, New York, 1993.
Disabled People South Africa, Poverty Submission to the Speak Out on Poverty hearings, 1998.
Economic and Social Council, 'Children with disabilities', E/Res/1997/20, 1997.
Faure, J,C, Development Co-operation 2000 Report, DAC Journal, OECD, Paris, 2000.

77
Fletcher, A, Overcoming Obstacles to the Integration of Disabled People, UNESCOsponsored report as a contribution to the World Summit on Social Development,
Disability Awareness in Action, London, 1995.
Harper, C, and Marcus, R, Child Poverty in Sub-Saharan Africa, SCF, London, 2000.
Hodgkin, R, and Newell, P, Implementation Handbook, for the UN Convention on the
Rights of the Child, UNESCO, Paris, 1998.
Japan National Coalition, Report to the Committee on the Rights of the Child, 1997.
Lansdown, G, 'The reporting process under the Convention on the Rights of the Child'
, in The UN Human Rights Monitoring System, ed P Alston, Cambridge University
Press, Cambridge, 2000.
Lansdown, G, 'Children's welfare and children's rights', in Children in Society:
Contemporary theory, policy and practice, Ed P Foley, J Roche and S Tucker, Open
University/Palgrave, Basingstoke, 2001.
Lindqvist, Bengt, UN Special Rapporteur for Disabled People, 'Monitoring the
Implementation of the Standard Rules', A/52/56, 23 December 1996.
Lynch, J, 'Provision for children with special educational needs in the Asia region',
World Bank Technical Paper 261, Washington,1994.
Machel, G, 'The Impact of Armed Conflict: A critical review of progress made and obstacles encountered in increasing protection for war-affected children', Winnipeg,
September, 2000.
Marchant, R, 'Working with disabled children', in Children in Society: Contemporary theory, policy and practice, ed. Foley, Roche and Tucker, The Open University, Milton
Keynes, 2001.
Middleton, L, Making a difference: Social work with disabled children, Venture Press,
Birmingham, 1996.
Pretorius, L, 'Children with disabilities at risk due to age and disability', in Making the
Link, A report from the International Seminar on Macroeconomics and children's rights, Save the Children, Midrand,1998.
Roeher Institute, 'Including all children: policy goals for achieving progress', a draft discussion paper for the 6th International Congress on Including children with

78 disabilities in the community, Alberta, 2000.
UNESCO, The Salamanca Statement and Framework for Action on Special Needs
Education, ED-94/WS/18, Paris, 1994.
UNICEF International Child Development Centre, 'After the fall: the human impact of
10 years of transition', MONEE Project, Florence, 1999.
'UNICEF challenges leaders to do more with schools', UNICEF Fact Sheet, New York,
2000.
United Nations Human Rights Commission, Sub Commission on Prevention of
Discrimination and Protection of Minorities, E/CN.4/Sub.2/1996/27, Geneva,1996.
United Nations General Assembly Resolution 48/96, New York, 1996.
United Nations, World Programme of Action Concerning Disabled Persons, New York,
1983.
'User financing of basic social services; A review of theoretical arguments and empirical evidence', Working Paper No 6 UNICEF, New York, 1996.
Watson, N, Shakespeare, T, Cunningham-Burley, S and Barnes, C, Life as a disabled child: a qualitative study of young people's experiences and perspectives, Children 5-
16: Growing into the 21st Century, ESRC research Programme, Edinburgh, 2000.
Zouev, A, Generation on jeopardy: Children in Central and Eastern Europe and the
former Soviet union, UNICEF, New York, 1999.
References
[1] R. Marchant. Letting It Take Time: "Rights" work with disabled children and young people.
[2] Bierman. K, 'WBU Youth Seminar', INFAMA, April 1999.
[3] Empower 2001, Danmail, internet.
[4] Day of General Discussion on the Rights of Children with Disabilities. Commitee

79 on the Rights of the Child, October 1997.
[5] Lansdown. G, Promoting children's participation in democratic decision making.
UNICEF Innocenti Research Centre, 2001, Florence.
[6] See Respect: A Report into how well Article 12 of the UCRC is put into practice across the UK. Article 12, London 1999
[7] CBR News
[8] Newsletter for the Sierra Madre, October 1997
[9] Network for the Needs of Children with Disability
[10] Overcoming Obstacles to the Integration of Disabled people. UNESCO sponsored report to The World Su mmit on Social Development, Copenhagen, Denmark, March
1995, Disability Awareness in Action.
[11] EFFA, 200, June 94
[12] Overcoming Obstacles to the Integration of Disabled people. UNESCO sponsored report to The World Summit on Social Development, Copenhagen, Denmark, March
1995, Disability Awareness in Action.
[13] Unclusion International No.6, June 1998.
[14] Newsletter from the Sierra Madre, May, 1995
[15] As above
[16] See reference 16
[17] Newsletter from the Sierra Madre
[18] Newsletter from the Sierra Madre
[19] Newsletter from the Sierra Madre, Ausgust, 1996
[20] CBR Update, Spring, 1997
[21] CBR Update, Sept-Dec, 1994

[22] International Rehabilitation Review '94, Vol 45, Issue 1
[23] Disability International, Summer 1998
[24] Disability International, Summer 1998
[25] WFD News, Jan 1998
[26] Newsletter from the Sierra Madre, 32, December, 1995
[27] WDF Newsletter, June, 1998
[28] Background Paper 01.11.1997 (DAA Files)
[29] EENET, Issue 4, March 2000
[30] Disability International, DPI Newsletter, March, 1994
[31] Part of a speech by Premier of Gauteng Province to International Seminar in
Johannesburg, South Africa - April, 1998. Published in report by DCIAG.
[32] Disabled Children Action Group International Seminar Report, 1998.
80 email: info@daa.org.uk