Bibliographies : Save the Children (UK)

The Rights of Children with disabilities

UN Committee on the Rights of the Child Theme Day

October 6th 1997

Disabled Children's Right to Inclusion

Sue Stubbs, Disability Advisor, Save the Children

This presentation will highlight some of the key issues relating to the inclusion of disabled children based on the experience of the Save the Children Alliance of international child rights non-government organisations with programmes throughout the world.

Introduction
The Convention on the Rights of the Child makes special mention of disabled children in Article 23, however, it is important to remember that every article in the Convention which refers to 'the child' applies also to the disabled child. Article 23 is open to ambivalent interpretation, because it refers to concepts such as 'special care', and 'special needs' without defining them. The priority needs of disabled children are not special, they are basic; disabled children need food, shelter, love and affection, protection, education.

Also phrases such as 'subject to available resources' and 'education ... in a manner conducive to the child's achieving the fullest possible social integration' are open to different interpretations according to who is making decisions and who holds the purse strings. Disabled children are currently denied their right to survival, development, protection and participation - no-one would argue that a non-disabled child's right to life and development should be 'subject to available resources'. There is a danger that Article 23 rather than promoting the rights of the disabled child, offers an excuse for indefinate procrastination; who will define 'available resources'?

Save the Children has a wide ranging experience of making a reality of the right of disabled children to be included in education and in society as a whole. This paper will present some of these experiences in order to highlight some of the barriers which stop disabled children achieving their rights, and also to highlight some factors which make inclusion possible.

The following is a summary of some problems frequently encountered in relation to discussions on the rights of disabled children:

Development fashion and competing issues
Children as a whole are marginalised within the development process, and there is a campaign by several agencies to push the 'children's agenda' in development. However, although particular groups of children such as disabled children, girl children, children from ethnic minorities are first and foremost children, lack of awareness means that unless these particular groups are specifically mentioned, they in turn become marginalised within the general children's agenda.

With increasing awareness of different types of children in 'difficult/exceptional circumstances', 'marginalised groups', 'discriminated groups' etc, there is a real dilemna regarding how to address the needs and rights of specific groups in the context of the needs and rights of the whole community. In practice, certain groups are more fashionable and appealing than others, attracting more media profile and more funding for projects. Certain themes become fashionable at certain times for all sorts of political reasons. Currently topics such as 'child labour' and 'sexual exploitation/abuse' are likely to elicit more interest and money from donors than 'disabled children'.

The starting point is to examine one's own attitudes, feelings and motivation in relation to supporting different rights campaigns, and to see whether our 'prioritising' reflects our own bias or some sort of 'objective' reality. Disabled children are everywhere, they lack access to basic rights, and yet simple inclusive policy making and programme implementation can realise their rights. The main barrier to inclusion is because 'disability' is not fashionable or attractive in the development world.

In addition to the competition between fashionable themes which puts disabled children at a disadvantage, there is a false exclusive thinking which operates within many theme-based projects. Research indicates that disabled children are subject to around five times the average levels of sexual abuse. Examples of exploitation of disabled children on the streets (and the disabling of children for begging purposes), and of the exploitation of disabled children for labour are well known within international NGO programmes, yet programmes and policies focusing on 'street children', 'child labour', and 'sexual exploitation' do not include disabled children.

Ignorance and False Beliefs
Another key problem linked to the discussion on development fashion, is the plethora of misunderstandings, myths and fear surrounding disability. As one Save the Children manager stated in his induction;

when I hear the word 'disability' I see an image of someone severely disabled and dribbling in a corner

This image brings with it uncomfortable feelings; horror, disgust, and also a sense of impotence - what can be done? Surely we need specialists, lots of research, advanced equipment, saintly people with patience. Better start a street children project instead - lively bright-eyed boys rebelling against society..., much more interesting and attractive.... A large majority of us have grown up in a segregated society - we do not have disabled friends, neighbours, partners, our children do not bring home disabled play-mates. If we do, then we see them as the exceptions, the heroes, the brave, the remarkable. This very simple factor perpetuates exclusion through lack of basic knowledge and awareness about actual disabled children and adults.

In one Save the Children programme in Africa, a blind child was asked to speak about his experience of education to the Save the Children staff. He was confident, eloquent, and very clear about his abilities, his rights, his ambitions. Staff were incredulous - they had never imagined a disabled child could speak like this. Some even asked whether the child had been trained before hand...

Who are disabled children?
Impairment is a normal part of human life, and children with impairments are to be found in every society, every culture, every community throughout the world, but it is society which dis-ables people with impairments through its negative attitudes and barriers to participation. It will always be impossible to define the precise number of disabled children in the world because the concepts of both 'impairment' and 'disability' are defined differently according to different cultures and contexts. There are many different types of impairments both visible and invisible, eg a child paralysed after polio or with cerebral palsy has an obvious visible impairment, b ut children with epilepsy, hearing impairment, different types of learning disabilities have no visible impairment. Most impairments are not severe and most disabled children can become independent in activities of daily living. The extent to which children with impairments are disabled or not depends on many things;

- the attitudes and behaviours of others towards them (parents, teachers, neighbours)

- the satisfaction of their basic needs (for survival, food, shelter, stimulation, love)

- policies which include or exclude them

- the accessibility of the environment

- their access to appropriate basic support for their physical, social, mental, communication, personal development (could be basic aids and equipment, appropriate help from parents, health and education services, access to early childhood care and education).

In economically poorer countries, one author (Helander 1993) estimates that 4% of the population would have moderate or severe disability. Often the average family has six members. This means that 25% of the population is directly affected by disability. This conservative estimate of 4% does not take account of the high incidence of children born with impairments who do not survive, and of children with mild impairments who are severely disabled in their particular context.

For example a child with a minor impairment such as an extra finger may in some societies be excluded from school or deemed un-marriagable because of this, creating severe disability. On the other hand, a child with Downs Syndrome who receives appropriate support, attends their local school, develops their functioning, makes many friends and is able to participate in the life of their community, will not be dis-abled by their impairment.

How are disabled children excluded?
There are many factors which influence the extent to which a child with an impairment is disabled and excluded within their particular culture and context;

in a nomadic tribe in Ethiopia, a woman had cared for a child with cerebral palsy for many years, now the child was about 10 years old and still could not clean or feed herself; the woman spent twelve hours a day at the market and was finding it increasingly difficult to come back and clean and care for the child - the tribe was in the desert and water was scarce. Everyone in the community was struggling to survive and no-one knew how to help.

From Exclusion to Inclusion in Education

So what is meant by the right to inclusive education? Currently the term has very different meanings in different cultures and contexts. Lessons from the experience of Save the Children highlight the following issues;

inclusive education is more than inclusive schooling; schools are only one part of education which begins in the family and continues throughout life.

There is a big difference between these two scenarios;

a) a severely disabled child in a poor rural community who hidden away in a back room, left alone in her own mess all day whilst her mother works, the father has left after blaming the mother for the birth, the siblings miss school to help with the care of the child, and are un-marriageable due to superstition. The disabled child has no access to daylight, stimulation and does not receive enough food because the mother does not know how to position her. The mother is isolated within the community and is concerned only with survival.

b) the same severely disabled child is in a community where awareness has been raised and simple training carried out for rehabilitation volunteers, health workers, and school teachers. The child has a corner seat where she sits outside the house everyday. Community members come to visit her and the mother belongs to a parents support group which also does some income generation. School children are encouraged and praised by their teachers when they visit the child and help to teach her basic skills. The rehabilitation worker has developed an educational programme for the child with the mother to prioritise activities of daily living.

The latter situation does not address all the challenges nor solve all the problems, but demonstrates that even a severely disabled child can be included in educational planning - it is not just a matter of location within a school building.

• inclusive education is part of a strategy for inclusive development; it cannot take place in isolation. The family, the community, other sectors all need to be involved from the start.
• inclusive education is primarily about transforming or building an education system which responds to the real diversity of children, whether according to disability, ethnicity, gender, age, HIV status or other type of difference. The focus is on changing the system, not trying to make the child fit a rigid system.
• finally, inclusive education is good for all children, because it results in school improvement and a methodology and curriculum which is child-focused.

Early Childhood Education
From birth, a child with an impairment can be excluded from access to the very basic support for their development that all children need; they are kept hidden and excluded from daylight, from ordinary environmental stimulation, from physical contact, from general stimulation for their movement and language development. Lack of sufficient early childhood care, stimulation and education cannot be compensated for in later life - this is a crucial and unique stage in a child's life.

In Anhui province in China, kindergarten teachers were trained to make their teaching methods more child-focused and to respond to individual needs through team teaching and flexible methodology. This enabled two children with mental disabilities to be included in each class, despite large class sizes and few resources. The new methodology does not only benefit the children with mental disability, but has resulted in improved education for all the children.

In many countries there is no organised kindergarten system. Often parents will wait many years after they have realised that their child is 'different', hoping that they will learn to walk or talk in their own time - often this means that the child misses out on crucial support to their development in the early years. Once Community-Based Rehabilitation becomes established and known about in the community, parents start to seek help much earlier for their children, and local volunteers or parent support groups can provide appropriate advice and training which enables the child to develop their basic skills.

In Fiji, Sireli used to lie flat on the floor without speaking - he was born prematurely and had suffered some brain damage. Virisila was the local Community Rehabilitation Assistant (CRA) who began to support the family when Sireli was nine months old. Virisila worked with Sireli's mother and they used local bamboo to make parallel bars in the house to help him to walk. His father made a wooden bar in the garden to help him to practice outside. Now Sireli is walking with a frame and talking, and is happy and confident, his parents hope he will be attending his local school when he is six.

Primary School Education
In the experience of Save the Children programmes, disabled children are excluded from local primary schools in many different ways;

• a common reason is very simply because parents and the community do not know or believe that a disabled child can be educated, that they can learn and develop.

'before training I did not know how to help them... we didn't think they could learn, we couldn't admit them to school because we thought the other pupils would not help them... I was afraid of some disabled persons..' teacher in a school in Lesotho

• parents are ashamed of their disabled child and wish to keep them hidden. Even if the parents are not ashamed, often neighbours will criticise parents for allowing disabled children to be seen outside the house.
• even when they are not ashamed, over-protection will often mean that parents keep their children in doors and away from school.
• in many rural areas schools can only be reached by long walks; there is no public transport or roads, and mobility-impaired children cannot access them.
• in many primary schools, teachers are poorly trained and the curriculum is often rigid and not very relevant to local communities. Therefore many children drop out or repeat years. Access to education cannot be separated from issues of quality.
• a survey in Lesotho found that 17% of existing primary school children had some sort of impairment which was affecting their learning. In some cases, teachers had devised their own ways to help; sitting them next to bright children, placing them at the front of the class etc. In many cases these children were blamed for being 'lazy', 'stupid', 'mad' and were left at the back of the class, repeating years, failing and dropping out. Teachers did not have the necessary knowledge and skills and so even though the children were sitting in the classroom, they were excluded from education.
• A simple programme of training and awareness raising for teachers not only enabled those children with impairments to benefit, but also made teaching more child-focused and reduced drop-out and repeater rates for all children.

It is a myth that disabled children are excluded primarily because of lack of resources, the main barriers to their inclusion in the experience of Save the Children are attitudes, beliefs, and systems which are not really designed to benefit children, let alone disabled children. The following are examples of a range of ways in which barriers to inclusion in education can be removed:

Lalla in Lesotho has cerebral palsy. The integrated education programme began in Lesotho when Lalla was 12 years old. Initially she started to attend the school in a wheelchair and made excellent progress. When the wheelchair broke her mother borrowed a neighbour's wheelbarrow. When the neighbour wanted the wheelbarrow back, Lalla is now at home, but pupils and teachers visit her at home and have developed a home-based programme for her. The teachers are intending to visit the local health centre to try to persuade the physiotherapist to visit her in the home, and to find a way to fix her wheelchair.

Children themselves are often the strongest advocates for educational inclusion:

'My life was full of fear.. . my mother would not allow me out of the house; because I was blind she said that if I went out I would fall down and get a second disability. I was lonely because all the other children went to school... Since I have been in this programme (non-formal education classes for blind children) I have learnt not to have fear - now I go anywhere, I have many friends because I am learning like other children.. My uncle did not believe I could learn so he asked me to write a word and I wrote it..... now I am confident I can attend my local school, if I have any problem I will ask my friends.. When I grow up I want to be a teacher...' Boy in the two-year education programme for blind children in north Ethiopia.

In Zanzibar, Suleman was 7 years old and was hearing impaired. His younger brother began to attend the local school, but Suleman's mother did not think there would be any purpose in sending a deaf child to school. One day, Suleman stole his brother's school uniform and took himself to school. The head teacher felt that because he had come he should stay. The teachers use signs with him, he points to pictures, and the children devised an action song which he can join in. The head teacher believes he has developed a lot of social skills and that his language is improving.

Refugee and Conflict Situations
Even in particularly difficult situations, there are examples of how inclusion can work.

In the Jhapa refugee programme in Nepal, disabled children were identified as a particularly vulnerable group whose needs were not being met. The manager appointed a full-time disability coordinator who piloted some participatory action-based research to provide a basis for a programme. Disabled children spoke about how they could help their families, but felt excluded because they were teased if they went outside their homes. Education was the first priority identified by both parents and children. After the first 18 months, over 700 children had been integrated into schools, sign language training has been carried out in all camps with both deaf and hearing children actively signing. An integrated pre-school is providing a quality model of early childhood education. The focus of the programme throughout was on integration and not creating dependency. When interviewed, both the camp manager and the disability coordinator said that disabled children could definately have been included right at the start of the refugee programme if the planning had been inclusive, rather than being identified at a later stage.

Conclusion
I will conclude with some key lessons from the experience of Save the Children;

• education is a basic right, and contrary to common belief, making education inclusive can improve acce ss and quality for all within low resource levels. It is not an expensive luxury.
• children with impairments suffer unneccessarily from false beliefs, and discriminatory policies and practices, and yet with basic educational opportunity they can not only learn to benefit themselves but can become productive members of their families and communities and help reduce poverty, rather than contribute to it when they are excluded.
• commitment and openness are the keys to success, rather than resources.
• in practice, it is development fashion and personal bias which influences debates on the rights of disabled children; excuses for procrastination and lack of action can easily and always be found, but whatever the excuses, there are increasing examples of success which disprove them.
• Change begins with an honest examination of one's own attitudes, understandings, knowledge and belief.

References and Bibliography

Helander E (1993) Prejudice and Dignity New York: UNDP

Holdsworth J and Kay J (eds) (1996) Towards Inclusion: SCF UK's Experience in Integrated Education Bangkok: Save the Children

Roeher Institute (1988) Vulnerable: Sexual Abuse and People with an Intellectual Handicap Ontario: G. Allan Roeher Institute.

Save the Children (UK) (1994) Together it is Possible: An Anthology of Disability Work in Overseas Programmes London: SCF

Save the Children (UK) (1997) Annotated Bibliography of Save the Children Disability Documentation London: SCF

Stubbs S (1993) Disability and Overseas Programmes: A Discussion Paper London: SCF

Stubbs S (1997) Towards Inclusive Education: The Global Experience of Save the Children Paper presented at the 2nd Ibero-American Conference on Special Needs, Cuba, July 1997. London: SCF

Tolfree D (1995) Roofs and Roots: The Care of Separated Children in the Developing World Aldershot: Arena, Ashgate Publishing

Bibliographies : Save the Children (UK)

31/03/1998