Negotiating identity: a qualitative analysis of stigma and support seeking for individuals with cerebral palsy

Abstract

Purpose: The current research investigates how adults with cerebral palsy construct their personal and social identities in the face of stigma when support seeking, and considers the dilemmas they might face when doing so. Method: Participants were 28 adults with cerebral palsy who completed an online survey reporting on their identity as a person with cerebral palsy and their experiences of stigma when seeking and accessing support. Results: Qualitative analyses indicated that the majority of participants sought support to help manage their cerebral palsy. Of these, half reported experiencing stigma in these environments, although they largely continued seeking support despite this. The majority viewed both their personal identity (i.e. as a unique individual) and their social identity (i.e. as a person with cerebral palsy) as important to their sense of self. However, how participants constructed their identity also appeared to vary according to context. While they appeared to value being seen as an individual to receive support that was unique to their needs (their personal identity), they also reported valuing the group to facilitate coping with stigma (their social identity). Yet, despite their utilities, enacting their identity in each of these ways was associated with costs. In order to access desired support, they had to incorporate their social identity as similar to other disabled people, which led to stigmatization through feelings of difference to the non-disabled. Conversely emphasizing individuality and difference from the disabled stereotype was associated with concerns about the degree to which their suitability for support might be questioned by their care provider. Conclusions: As has been observed in many fields, stigma can complicate identity. In this domain, people with cerebral palsy face a number of threats in how they construe their identity, both in navigating stigma and maintaining access to needed support.

Implications for Rehabilitation

• Stigma in help and support settings remains a significant problem for adults with cerebral palsy (CP). This creates dilemmas regarding how they view and construct their identity in the contexts of stigma and support-seeking.

• It is important for specialists to recognize that the needs of adults with CP are unique, and so provided services should be tailored to the individual.

• Healthcare providers should also encourage their patients to actively engage with online disability support groups in order to build a meaningful social identity with other people with CP.

• Cerebral palsy
• identity
• stigma
• support

Acknowledgements

We would like to thank the administrators of the cerebral palsy social networking pages used for recruiting: Adults Hemi Chat, CP discussing personal interests and other issues, Hemihelp, Just CP, Living and coping with hemiplegia, and Scope. We would also like to thank Emily Atkins and Chhavi Sachdeva for assisting with the coding of the qualitative data.

Declaration of interest

Funding for this research was provided through an Economic and Social Research Council studentship awarded to the lead author (Grant Number: ES/J50015X/1).