The experience of cerebral palsy stigma amongst adults living in the UK and Ireland: A qualitative co-designed project
Prepared by: AACPDM Digest reviewer/ Dr Manjula Manikandan, PhD.
Keywords:
- Cerebral palsy
- Stigma
- Adults
Study Type: A cross-sectional qualitative co-designed survey.
Summary: This study used an online survey, co-designed with adults who have lived experience of cerebral palsy (CP), to explore how adults in the UK and Ireland experience stigma and discrimination. Eighty-six people completed the open-text component, and 48 answered quantitative items about the sources of stigma. Quantitatively, 87.5% of respondents reported having experienced stigma, most commonly from the public, classmates, healthcare professionals, and employers.
Thematic analysis of qualitative responses yielded five interrelated themes. The first theme, rigid stereotypes, reflected participants’ frustrations with narrow and incorrect assumptions — for example, that CP always involves a learning disability, wheelchair use, or severely reduced capacity, forcing individuals to constantly disprove what others assume. The second theme, impact on participation, documented how these stereotyped beliefs and environmental barriers limit opportunities for involvement, particularly in accessing public spaces, employment, and intimate relationships, including sex and parenthood. The third theme, interpersonal difficulties, described how people with CP often feel both extremely visible (stared at or questioned) and invisible (ignored, spoken over), and how they are frequently infantilized or pitied by others. The fourth theme, systemic discrimination, highlighted structural inequities, including workplace discrimination, inadequate accommodations, limited recognition from healthcare providers, and inaccessible built environments. The final theme, negative emotional impact, underscored how stigma and discrimination erode well-being; participants described reduced self-confidence, social withdrawal, anxiety, and trauma linked to their repeated exposure to exclusion.
The study concludes that adults with CP experience stigma and discrimination across multiple domains. Improving public understanding of the heterogeneity of CP and removing accessibility barriers are central strategies to address these issues. Despite existing legislation, discrimination remains pervasive, indicating that further efforts are needed to ensure that legal protections are enforced across all settings.