The trouble with normal: the struggle for meaningful access for middle school students with developmental disability labels

Abstract

This critical, qualitative study considers issues of access to the academic and social experiences of middle school for five students with labels of intellectual disability and autism through a lens of ableism and enforced ‘normalcy’. Starting from the position that schools are sites where ableist norms of performance leave many marginalized, this study privileges the perspective of individuals whose inclusion in school is most tenuous. Challenging the notion that mere access to general education classrooms and instruction is enough, this study interrogates questions of efficiency and meaningful engagement within the context of middle school. This paper first illustrates the ways that ableism pervades middle school settings and then outlines a typology of particular ways of being and performing that are privileged and an illusion of normalcy maintained. Finally, this article explores the implications of ableism and enforced normalcy on the engagement and participation of students considered to have developmental disabilities.

Keywords:

• ableism
• inclusive education
• middle school
• developmental disability

Notes

1. All names of people and places have been changed to protect anonymity.

2. The American Association on Mental Retardation has recently changed its name to the American Association on Intellectual and Developmental Disabilities. While the educational label for three of the students in the study was ‘mental retardation’ I have chosen to use the term ‘intellectual disability’ to reflect this change. However, I recognize that all of these terms are problematical and do not reflect the socially constructed nature of disability.

3. Jacob uses facilitated communication, which is an alternative means of expression for people who cannot speak or whose speech is highly limited (e.g. echoed, limited to one or a few word utterances) and who cannot point reliably. The method has been used as a means of communication for individuals with severe disabilities, including persons with labels of intellectual disability, autism, Down's syndrome and other developmental disabilities. Jacob used a lightwriter communication device most of the time.