Right to Life and Development

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

Right to Life and Development Disabled Peoples' International SUBMISSION TO THE COMMITTEE ON THE RIGHTS OF THE CHILD THEMATIC DAY ON DISABLED CHILDREN 6 October, 1997 THE RIGHT TO LIFE AND DEVELOPMENT Disabled Peoples' International is a cross-disability coalition of over 120 national organisations of disabled people. We are committed to the achievement of equal rights for disabled people, including disabled children. This submission is based on our direct experience and is supported by evidence from disabled children and adults collected from all over the world and put in the context of well-researched data and records of the situation of disabled people. Introduction "My polio was a devastation to my mother; since society at that time felt it was obeah, a curse by God" Michael Menzies, Guyana Why are there so many negative statistics about disabled children? Why are disabled people the poorest of the poor in every country in the world? Why are 97% of disabled children in developing countries without any form of rehabilation and 98% without any education? Why is it that in the North, disabled children are 4% of the disabled population and in the South only 2%? Why is it that disabled children suffer more violence and abuse than other children and are shut away in institutions, cupboards and sheds, often starved to death (see appendix. 1). And why is that these - and many other - horrifying but verifiable facts, are not being given the attention they deserve? In this submission Disabled Peoples' International (DPI) will attempt to analyse attitudes to disability and disabled children in particular and show that it is these attitudes which are often the root of all these shocking statistics - denying far too many disabled children the right to life and development itself. We will also give evidence that many of the economic arguments that are often put forward to excuse these attitudes and the policies that derive from them are themselves based on those negative attitudes and not based on long-term financial sustainability or human rights. It is our belief that disability is human rights issue All the articles in the Convention on the Rights of the Child are applicable to disabled children but because of the particular isolation and segregation suffered by disabled children it is necessary to have specific articles to support their rights, in an attempt to draw the world's attention to what Perez de Cuellar called 'The Silent Emergency Stigma All over the world, different cultures, religions and myths emphasise the disgrace of giving birth to a disabled child. Despite modern, human rights attitudes, the idea that a disabled child is the result of the anger of gods, or ancestors, the embod&ment of sin in the family or of sin itself, is still prevalent. Endless research shows that parents of disabled children feel guilt and sometimes take the blame for the impairment on themselves. Families, communities and the medical profession often do not help to alleviate this guilt by their attitude to the baby and to the parents, calling the child a 'vegetable', 'useless' 'a burden'. Inevitably this stigma and guilt result in isolation or segregation of the disabled child. Disabled babies are left at the gates of cities, abandoned in institutions or left to live helplessly in the corner of the hut or room. Almost no research has been done into the killing of disabled babies at birth although there is evidence. In developed countries, many doctors have admitted to taking a decision not to keep alive babies who they considered n6t to be 'viable'. Between 1977 and 1982 four doctors and a social worker at the Children's Hospital of Oklahoma monitored the births of babies with spina bifida and through their research proved that "you can kill the disabled babies of poor families and get away with it" (Woodward, 1996). In this period twenty-four babies were killed. A recent case in the UK has recently been publicised of a woman who begged for efforts to be made to keep her baby alive but was met with an absolute refusal by the doctor. In developing countries there are plenty of stories of local birth practioners advising mothers to smother their disabled babies. These accounts only come to light when the mother has nQt taken the advice. Understandably, there are no figures on the numbers of babies who actually are allowed to die. It is, however, interesting to note that, despite the far greater numbers of children in relation to the overall population in developing countries, the numbers of disabled children are significantly less in relation to the total disabled population. (2%, as opposed to 3-4% in developed countries). Viewed in relation to the aging population in developed countries, these figures are even more revealing. Having survived birth, what happens then to disabled children? Recent research in Israel found that parents tend to isolate their disabled child from family life, considering them to be a 'non- person'. One piece of research (1997) looked at 200 families of different education, national affiliation or religious and ethnic background and they all showed a common, isolating behaviour toward their disabled child. One child was abandoned in one room of the couple's home, the other children were not allowed to go in and the mother only went in to change, wash and feed her. The child died after two years of this isolation. Another child who had been treated as the 'smartest and most beautiful child in the world' for the first year of her life, was then treated like the animal her mother considered her to be because of the diagnosis of intellectual impairment: 'She isn't like us. She's like a little animal. She can't possibly live with us. She's different.' In another home the disabled child became the unpaid servant, living in a separate room and eating separately but doing all the work. The are a number of these stories from all over the world. Some of the leading disabled activists started their young lives n situations similar to those above. Ed Roberts, the founder of the Independent Living Movement in the USA was written off as a vegetable at 15 and his mother told to abandon him - luckily she took no notice. Joshua Malinga, past-President of DPI and ex- Mayor of Bulawayo, spent the first twelve years of his life crawling around the floor of his mother's hut, un-educated and isolated, until he was rescued by a missionary. Disabled girls have an even worse time. What family resources there are are not given to feeding them. Though sometimes they survive despite the efforts of their families to allow them to starve to death. 'After I got polio my mother refused to feed me but I managed to keep myself 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." Vandanah, India. There is no doubt that in some cases, because of lack of money, families have to make difficult decisions and often sacrifice the lives or health of some of their child ren (mostly the girls) in order to keep the rest of the family active. But evidence is increasingly being collected to show that disabled children are being allowed to starve even when there is enough food to go around. There are other situations where the mother of a disabled child is abandoned by the husband because he cannot tolerate the stigma attached to having a disabled child or is not prepared to take on the extra responsibility. In developing countries this situation often forces the mother into either abandoning the child herself or becoming a beggar. Even if the family keep the child fed and loved, there is only a 2% chance in the developing world that they will receive rehabilitation and a very high chance that they will die of secondary medical problems. For instance, children sent home from hospital after spinal injuries are not likely to live more than 6- 12 months because of infections from pressure sores. Quality of Life It becomes clear that these very negative and guilt-ridden attitudes to disability lead inappropriate evaluations of the quality of life of a disabled child. The life of a disabled person is so obviously one which is a burden to themselves, their families and the state, that it is better that it never occurs. These attitudes may appear to stem from kindness and consideration, but, in reality, this kindness and consideration is often based on a non- disabled person's fears of what it is like to be a disabled person or their fear of what they are going to have to do to support that disabled person. No proper consideration is given to ensuring that the disabled person, child or baby has the right to evaluate her or his own life. Nor is there consideration of the role of disabled people in society, the nature of our difference, and an acknowledgement that that difference should be celebrated, not denied. These stigmatising attitudes have also had an impact on policies and legislation regarding abortion, sterilisation, genetic engineering, euthanasia and other bio-ethical issues. In many countries in Europe abortion is only allowable up to 22-24 weeks of pregnancy but for a foetus which has been diagnosed as having a disabling impairment, an abortion can be carried out any time up until full term (UK). This completely different legal basis denies the disabled foetus the same right to life as the non- disabled foetus. Added to which, many mothers are put under considerable pressure to have an amniocente~is test to diagnose impairment and if it proves positive are put under even more pressure to have an abortion. In China, eugenic laws designed to eliminate 'inferior births' have caused international concern. Undoubtedly China has problems of population control, but just as there is an increasing need to ensure that population control does not adversely affect girl babies, so should there be concerns that China's new laws do not adversely affect disabled people. These laws forbid those with certain hereditary conditions such as hepatitis, venereal disease or mental illness from marrying and force many people with other conditions to be sterilised. This does raise concerns as to what would happen if these policies were linked to advanced genetic screening techniques - China is already developing skills in both genome sequencing and gene therapy. Many fear that China is embarked on a programme of involuntary cleansing. They would not be first country to do it this century. By the 1930's 41 states in America had compulsory sterilisation laws for the 'insane and feeble minded', 17 prohibited people with epilepsy from marrying: Today 27 states still have these laws. The Nazis perfected their gas chambers on 80-100,000 of the disabled population, having originally introduced sterilisation of men and women with hereditary diseases in 1933. Accounts received from many European countries, the United States, Latin America, Australia and Japan tell of disabled young girls being pressured into sterilisation - and even full hysterectomies - in order to prevent unwanted pregnancies or 'inconvenience' to their carers during menstruation. Many of these countries have legislation to uphold this sterilisation, giving decision-making to the judiciary and/or authorised representatives. Recent conventions on bio-ethics are still allowing medical interventions on disabled children and adults 'who cannot speak for themselves' if it is felt to be in their own interests by their authorised representative or, as in the UNESCO convention, in the interests of the disabled young persons sibling. Disability as a financial burden One of the main excuses given by governments, local authorities and other service. providers for not ensuring implementation of comprehensive, non-discriminatory measures for disabled people is the cost factor. But those costs are generally blown up out of all proportion to reality as a reason why a human rights attitude to disability should not be taken. Building an institution does, indeed, cost a great deal and even more to sustain it over the years and generally only services a comparative handful of disabled people who may remain as economically passive recipients throughout their lives. Traditionally most of the money spent on disability services either goes into buildings or into paying the salaries of centralised, expensive professionals and administrators, rather than into local, rights-based initiatives. The solution to this expenditure shold not be to cut costs but to re- direct the funding to intitiatives that support disabled people's rights, lead to their integration in society and therefore contributors to that society. A perfect example of this redirection of funding is the school of the Divine Light Trust in India. For thirty4ive years this school educated blind children, taking in only 8-10 new pupils a year. In all only 5% of blind children in India were being educated in schools for blind children. Then a radical change was made: without increasing the budget and by becoming a resource centre, training teachers in mainstream schools to integrate blind children into their schools, the school now reaches practically the whole of India and also provides training to enable children with other impairments to go to mainstream, local schools. There are many other cost-effective ways of giving disabled children the tools for their own, individual development to allow them to have choice and control over their lives, stay with their families and ensure that they can receive an education and play an active role in their community. For all countries in the world, their most important asset is their people. Sustainable development depends on the involvement of all people in the economic life of their country. Knowing that disabled people make up between 8 - 15% of any population, it does not make economic sense to leave them out of the equation. Even in poor countries, governments should look at what it is costing them to ignore disabled people - to ignore such a large proportion of their population as equal participants in national productivity. Many reports presented to the World Summit on Social Development demonstrated that economic and social development was only sustainable in a rights based environment. This environment, to be truly rights~based must include disabled children and adults as contributors, tax payers and consumers - not just receipients of benefits and charity. Defining Disability One of the reasons for focussing on abstract notions of cost in relation to disabled people and for the stigmatising life- threatening attitudes is that disability is still seen as an individual characteristic and not the social situation that it really is. This medical, individual model of disability was emphasised by the World Health Organisation's International Classification of Impairments, Disability and Handicap (1980). Since then many of those concerned with disability: aid and development agencies, policy-makers, sociologists, human rights workers and, of course, disabled people themselves have analysed disability more clearly and have realised that it is the social situation imposed on an individual with an impairment or functional limitation which is the disability. Because of the barriers of environment and attitude, society is not constructed to include disabled people and we are systematically denied our human rights. The revision of the ICIDH now in progress, hopes to reflect this definition of disability as a social situation and as a rights issue. Conclusion The Convention on the Rights of the Child uphblds the rights to life and development. The denial of these rights in the case of girl babies or street children, child prostitution and children workers is well known and documented. The issue of child abuse is now becoming everyday news. These wrongs need the world's attention and something has to be done about them. But the world also needs to pay attention to the denial of life and development of disabled children. As we have shown in this submission, this violation is happening all over the world, in every nation of the world and it is happening to disabled children of every class, culture and religion. In some countries these violations are legalised. But this is an issue which is not discussed or fully reported. It is perhaps too painful or too big. People find it hard to put the facts together and see what the results are. There needs to be a major international awareness raising campaign to get these issues into the collective consciousness. It is our belief that this denial of the.nght to life, to be born, to survive, is at the root of society's neglect of disabled children. Until we all look at the issue in depth and face up to the mounting evidence, nothing will change and nothing will be done. We really welcome the opportunity of this theme day to address this difficult issue. We believe it is a ~ep towards establishing a society where the birth of a disabled child will be greeted with the same pleasure and joy as the birth of any other child and the stigma and the guilt and the fear will have gone. Rachel Hurst Chair of DPI/Europe and Executive member of World Council August 1997 Bibliography: Much of the evidence contained in this submission is available in individual testaments and reports contained within the extensive library of Disability Awareness in Action, London, on the status of disabled people. Helander, E.A.S. (1993) Prejudice and DIgnity: an Introduction of Community-based Rehabilitation. United Nations Development Programme, New York. HMSO (1989) OPOS survey of Disability in Great Britain, London. Hurst, R. & Fletcher, A. (1995) Oyercoming Obstacles to the Integration of Disabled Persons. Disability Awareness in Action. London.A UNESCO sponsored report. Reiser, R. & Mason, M. (1992) Disability Equality in the ClassroornA Human Rights Issue. DEE, London. United Nations, (1990) Disability Statistics Compendium, New York. United Nations (1992) UN Standard Rules on the Equalisation of Opportunities of Persons with Disability. New York Weiss, M. (1997) Territorial Isolation and Physical Deformity: Israeli parent's reaction to disabled children, Disability and Society, Carfax, Oxford. Wood,P. (1980) International Classification of Im4airments, Disability & Handicap, WHO, Geneva. Woodward, J.R. (1996) It Can Happen Here. Disability Awareness in Action, London. Zinkin, P & McConachie, H. eds. (1995) Disabled Children & Developing Countries, MacKeith Press, London.