Enabling the Authentic Voice: Generating Ethnographies of Women with Cerebral Palsy

Abstract

Historically, research has been undertaken using methods that have restricted the participation of disabled women with speech impairments. Metaphorically and literally, their voices have not been heard. Facing barriers to speak for themselves makes it difficult for women to challenge disabling narratives, including those of asexuality. The result is increased marginalisation, inequality and simultaneous oppression across different spheres of public and private life. In this paper, we reflect on our experiences of undertaking two qualitative studies that explored experiences of sexual and reproductive healthcare for women with cerebral palsy (CP), using internetbased methods such as Facebook and email. We offer reflective insights regarding the core issues for researchers when conducting research about sensitive topics with women with CP in particular, and disabled women in general. Specifically: 1) An enabling research environment; 2) Interpersonal relationships and identity. Overall, we argue that using digital and flexible research approaches not only enables disabled women to be involved in research about issues that concern them, but also provides an enabling context in which their authentic voices can be heard.

The impact of ageing on adults with cerebral palsy: the results of a national online survey

“…Although extensive specialist knowledge and rehabilitation is available for children with CP in the UK, people with CP report feeling abandoned by the adult healthcare system as their health needs (existing and new) are no longer being met. 13 , 15 , 16 Owing to the lack of dedicated adult services for people with CP, some paediatricians keep their patients on their caseload beyond age 18. To the authors’ knowledge, there are no studies in the UK that have quantified different aspects of healthcare utilisation and embodied effects of CP across the life course.…”