It Is Our World Too

IT IS OUR WORLD TOO!

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 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.

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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.

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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

"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, 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 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.

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 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 poverty-related 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).

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).