"It's our job": qualitative study of family responses to ableism.
Forty-five parents of children with autism, cerebral palsy, Down syndrome, and sickle cell disease participated in 8 focus groups. Parents discussed how they, the child with the disability, and the siblings addressed community perceptions about the child's disability. Themes evolving from the interviews included (a) support and lack of support, (b) inclusion and exclusion, and (c) the family members' roles during their interactions with the community. Parents viewed their roles in the community as (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. The relationship between themes is presented, and the relationship between themes and parent empowerment is discussed as well as the ways in which the themes reflect underlying ableism.
Neely-Barnes
Susan L
SL
College of Social Work, University of Tennessee, Memphis, TN 38163, USA. snlybrns@memphis.edu
Graff
J Carolyn
JC
Roberts
Ruth J
RJ
Hall
Heather R
HR
Hankins
Jane S
JS
D000223:Adaptation, Psychological; D000293:Adolescent; D000328:Adult; D000755:Anemia, Sickle Cell / Q000523:psychology; D001321:Autistic Disorder / Q000523:psychology; D017028:Caregivers / Q000523:psychology*; D002547:Cerebral Palsy / Q000523:psychology; D002648:Child; D002675:Child, Preschool; D003142:Communication; D003674:Defense Mechanisms; D019988:Children with Disabilities / Q000523:psychology*; D004314:Down Syndrome / Q000523:psychology; D005260:Female; D017144:Focus Groups; D006266:Health Education; D006801:Humans; D008297:Male; D008875:Middle Aged; D011287:Prejudice; D011368:Professional-Family Relations; D012929:Psychological Distance; D011639:Public Opinion; D012380:Role; D035781:Siblings / Q000523:psychology*; D012944:Social Support