Family and disability: a social and cultural analysis of intellectual disability in Ecuador (poster presentation)
Hilda Beatriz Miranda-Galarza, Leeds University
Abstract
Due to the absence of sociological and anthropological studies about family and intellectual disability in Ecuador, my research aims to produce critical and reliable information regarding the understanding that families with members labelled as intellectually disabled have about the concept of intellectual disability in Ecuador. Applying principles of reflectiveness, consciousness and participation (Freire 1972, Boff 1988) the study aims for finding elements that permit to examine critically two facts: The factors that influence the construction of the concept of intellectual disability within disabled families. The strategies that disabled families and their impaired members develop to negotiate, to accept, or to reject and to confront the official concepts, labels and medical/psychological treatments. Besides, to affirm that intellectual disability is a social and cultural construction that is explained by western figures of correctness, normalcy and (in)competence (Jenkins 1998) in the Majority World (Stone 1999) implies to inquire about two facts. Firstly, the criteria about humanity that has been spread throughout the world by a western thought (Edgerton 1970, Jenkins 1998, Whyte 1991, Ingstad 1999), ignoring the diversity of the social groups and their complexity in time and in space (Devlieger 2000). Secondly, the terms of classification and labelling in which persons with intellectual disability are commonly placed. These imply that the family will be also evaluated under those parameters creating a tension about what has to be done and how it should be done. With the purpose of giving voice to the individuals and their families, life stories will be collected from Ecuadorian families of three different ethnic backgrounds: indio, negro and mestizo. The process will be developed through: in-depth interviews with a semi-structured format; and, participant observation as a useful technique to understand meanings of life and experiences. The study hopes to play a significant part in giving voice to disabled people and their families which will hopefully bring about new means for policies and changes of attitudes.