Abstract:

Referring to the selected statement of the United Nations Convention on the Rights of Persons with Disabilities, Article 3 General Principles “Respect for the evolving capacities of children with disabilities and respect for the right of children with disabilities to preserve their identities” (Convention, Article 3, p. 4), ethnographic interviews of parents and professionals were analyzed to understand what features of a child with a disability affect a child’s right to health care and education. The research sample – 15 parents and 30 professionals. The method of research data collection is interactive ethnography (Green & Harker (Eds.): 1988). The method of processing research data is thematic analysis (Braun, Clarke: 2012). The statements of parents and professionals found suggest that child identity issues are not given much attention or consideration. The child’s self-perception in the environment and the influence of that perception are hardly mentioned. However, some statements are emotionally and semantically strong, e.g., the mothers’ thoughts that “Happiness for such children is created by the family”; “if you want to raise the child on his/her feet, you have to work hard, forget yourself, sacrifice”; “I myself already felt again that I am constructing again that she is a child”. The semantically strong signal is sent by the statements of the professionals (doctors, physiotherapists), e.g., “(...) and doctors (...) they do not encourage parents to participate in society (…)And they do their best to only cure the child’s physical or some other disability”. “Our professional help will be of little use if parents do not accept the child’s disability”. Experience analysis shows that the identity of a child with a disability is closely related to that of the family. If parents are aware of their identity, they also help the child to find himself/herself. The incomprehension of some doctors that “disability results from the interaction between persons with impairments and attitudinal and environmental barriers” (Convention, Preamble, p.1-3), focusing solely on health issues, harms not only the identity of children with disabilities but also the identity of their parents. Forming the identity of a child with a disability, the doctors’ ability to present the real situation to the parents, predicting a lifetime perspective, also has influence. This enables not only respecting the identity of the child with a disability but also developing it properly by maintaining children’s abilities while enhancing health. With a clear identity of parents, the preconditions of collaborative assistance from professionals are created. If this is not the case, professionals should be the ones to take the initiative to help parents understand the child’s disability in real terms and to provide complex support. Professionals can have a significant impact on parents’ real understanding of a child’s disability, capacities, the formation of child and parent identities. The doctor’s respect for parents, treating them as equals, creates a favorable environment for the collaboration between the doctor and parents. Early childhood diagnosis not only enables early child and family support reducing health problems but also forms the attitude of the child and his/her family that helps to overcome many difficulties caused by the circumstances of life, enables to live a dignified life and at the same time receive the necessary medical and educational assistance.

Keywords:

United Nations Convention on the Rights of Persons with Disabilities, identity of a child with a disability, parents, medical professionals, educators, collaboration.