Troubling disability: experiences of disability in, through, and around music

The purpose of this study was to trouble existing conceptions of disability that ground music education literature and practice. I sought plausible insights into how disability is experienced in, through, and/or around music by participants who are disabled persons/persons with disabilities (DP/PwD). Insights gained might allow readers to complexify and trouble taken-for-granted assumptions about disability. Questions included: (a) How do participants experience disability in, through, and around music? (b) What plausible insights related to disability can be gained by attending to participants’ experiences of disability in, through, and around music? (c) What plausible insights related to inclusion can be gained by attending to participants’ experiences of disability in, through, and around music? The inquiry approach was grounded in Buberian relational ontology, phenomenology, interactional theories of disability, and narrative.

Seven DP/PwD participated in this study: (a) Erica, a 14-year-old diagnosed with a developmental disability of unknown etiology; (b) Duke, a drummer diagnosed with Williams syndrome; (c) Birdie, an abstract visual artist with epilepsy who used music to inform her art; (d) Daren, a b-boy/breakdancer diagnosed with Tourette syndrome, (e) Sienna, a legally blind social work college student who played banjo in a music therapy-based bluegrass band and participated in musical theatre; (f) Ice Queen, an undergraduate flute player recently diagnosed with Attention deficit/hyperactivity disorder (ADHD); and (g) Culann, an adult counselor and music listener with ADHD and mood disorders. Data generation included conversational interviews, observations, artmaking, and serendipitous data.

Data co-generated with participants were crafted into narratives of their lifeworlds, including description of their experiences with disability in, through, and around music and in other aspects of their lives. An envisioned conversation among all participants demonstrates the shifts and complexities in the meanings of disability and unpacks different ways participants describe and understand disability and the myriad roles that music plays in their lifeworlds. The final chapter of the study offers discussions and suggestions regarding thinking about and approaching disability (i.e., interactional theories, intersectionality, and identity), inclusion (i.e., belonging, suggestions by participants, and anti-ableist pedagogy), and research/writing.