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 internet-based 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.

Keywords

• participation
• qualitative
• digital methods
• disabled women
• cerebral palsy
• health