Like penguins in the desert: strategies of resistance to stigma of families with autistic and Down syndrome children
Author: Alice Scavarda, alice.scavarda@unito.it
Department: Dipartimento di Culture, Politica e Società
University: Università degli Studi di Torino, Italy
Supervisor: Mario Cardano
Year of completion: 2017
Language of dissertation: Italian
Keywords:
disability
, health
, stigma
, family
Areas of Research:
Health
, Family Research
, Theory
Abstract
The qualitative study was intended to analyse the strategies of resistance to stigma of families with autistic and Down Syndrome children. I carried out 111 in-depth interviews with parents, children, adolescents and adults with autism (low level of support) and Down syndrome, siblings and healthcare professionals. I also shadowed two families with an Asperger child and an adolescent with Down syndrome. The results of the study show that the main forms of stigma experienced by parents and siblings are disavowal and refusal of disability. Parents and siblings play out an heterogeneous set of tactics and strategies to manage the stigma of having a defective child or a child perceived as rude and spoiled. These are aimed at neutralising strangers’ stigmatising attitudes, through prevention, trying to stop the child when he/she is misbehaving, and through instrumental telling, explaining to strangers what is his/her condition. Moreover, parents and siblings are also able to actively resist the stigma of being affiliated with a stigmatised person, by using two main rhetorical devices: normalisation and medicalisation. However, both rhetorical devices seem unable to provide children, adolescents and adults with autism and Down syndrome with positive role models and alternative definitions, beyond the biomedical model and the mainstream language.
