A Qualitative Investigation into Parent and Sibling Responses to Ableism

Background and Purpose:

Social workers have an ethical obligation to work to eliminate oppression (National Association of Social Workers, 2008). It has been well-documented that people with disabilities experience a form of oppression often referred to as ableism (see, for example Gill, 2001; Linton, 1998). It is less understood how and to what extent family members of people with disabilities also experience ableism. To investigate how this type of oppression is experienced by family members, this study employed qualitative methods. A set of themes related to managing the experience of oppression emerged from the focus group discussions.

Methods:

Forty-five parents of children with autism (n=11), cerebral palsy (n=8), Down syndrome (n=10), and sickle cell (n=16) participated in eight focus groups. Parents were asked questions about how they, the child with the disability, and the siblings interacted with extended family members and the community. After the data were collected, the audio tapes of the focus group interviews were transcribed and data were imported into Nvivo7. Using an interpretive method, two investigators read, identified, and agreed on units of text. To ensure rigor, investigators adhered to the following set of procedures. Both investigators independently coded each text unit in the transcripts, compared codes, resolved differences, and formed a preliminary definition for each code. This process was completed for both DS focus group interviews and was followed for each of the remaining six focus group interviews. New codes were added and definitions of codes were revised as the process continued. Definitions for each code were agreed upon and each focus group was re-coded using these final definitions. Codes were organized into categories that were agreed upon by the investigators. Themes emerged after reflection on these categories. An iterative process was followed as the investigators returned to the data to make certain their interpretation as represented by categories and themes was consistent with the data. The investigators used discussion to review analytical memos, re-contextualize the data, explore biases and disagreements, and build consensus (Denzin & Lincoln, 2005).

Results:

The majority of the study participants were mothers (84%). Most parents were either African-American (53.3%) or White (42.2%), and the mean age of study participants was 42.5 years. Three sets of themes were identified: (a) support and lack of support, (b) inclusion and exclusion, and (c) the parent's and sibling's roles in interacting with the community. Five roles in the community were identified: (a) advocating, (b) educating, (c) informing, (d) ignoring, and (e) hiding. Examples of each theme will be given. The relationships between themes and the ways that these themes represent the underlying experience of ableism are discussed.

Implications and Conclusions:

This study makes an important contribution to the social work literature on family members of people with disabilities. Greater awareness of ableism could lead practicing social workers to have more empathy and understanding of the family's experience. In addition, knowledge of ableism can lead to advocacy efforts both at individual family and policy levels to eliminate oppression of people with disabilities.