Comment le questionnement éthique est devenu indispensable au quotidien dans la prise en charge des enfants avec handicap

Both wars of the XXth Century have radically changed the view of the disease and the morality. The people who came back from the Great War could not receive any more degrading qualifiers, they had become heroes. It was necessary to show solidarity and to envisage rehabilitation. During the Nuremberg trial in 1946, the morality within the meaning of rules and good behaviours dictated by culture and religion was questioned. This marked the beginning of ethics. The objective of medicine, which was to save the patient from death, has been modified little by little: it no longer aims at a “healthy life”, but a life sometimes with disease. In France, three official texts have asserted this evolution: the law for the integration of people with disabilities on 30 June 1975, the World Health Organisation (WHO)'s International Classification of Functioning, Disability and Health (ICF) in 1981, and the law of 11 February 2005 on equality of rights and chances and participation and citizenship of disabled people. In the XXIth Century, disease is no longer a debilitation, nor only a question of postwar solidarity; disease becomes a personal question. The basis of ethics, which is the consent, the possibility of saying no before saying yes, is asserted in the law of 5 March 2007 concerning all vulnerable people including children, imposing that care givers take into consideration the specificity of the most vulnerable patients in their practice, and their participation as well as the respect for their opinion.