Enabling the authentic voice: generating ethnographies of women with cerebral palsy

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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.

Original languageEnglish
Pages (from-to)82-95
Number of pages14
JournalScandinavian Journal of Disability Research
Volume24
Issue number1
DOIs
Publication statusPublished - 11 Mar 2022

Bibliographical note

Funding Information:
The first study we draw on was funded by the Burdett Trust for Nursing (BTN). The purpose of the study was to examine and understand how women and teenage girls with CP, from across the UK, access and experience SRH across the female life cycle (from menarche to menopause). The study was conceived and conducted by the first author and designed in collaboration with nursing researchers (second and third authors) and an advisory group of researchers in disability studies, people with CP or representing organisations for people with CP. All brought their insider knowledge, of either living with CP or working in the area, to the research to ensure it was designed to enable the potential participation of all women with CP, in the UK over the age of 14 and with the mental capacity to consent. The total sample involved twenty-five women, aged between 15 to 65. The study was approved by the Health Research Authority (IRAS ID 268208) through the West Midland Coventry and Warwickshire Research Ethics Committee (20/WM/0003).

Publisher Copyright:
© 2022 The Author(s).

Keywords

  • Cerebral palsy
  • Digital methods
  • Disabled women
  • Health
  • Participation
  • Qualitative

ASJC Scopus subject areas

  • Social Sciences(all)
  • Physical Therapy, Sports Therapy and Rehabilitation

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