Ageing and CP: Exploring your Identity

“I have CP. But is my entire identity wrapped around this condition? Who am I?” What a profound remark. A recent study 1 conducted in New Zealand, aimed at better understanding how adults experienced living with Cerebral Palsy (CP). The results proved truly insightful. Of the 28 adults interviewed, aged from 37 to 70, half were male and half, female. Another of the five themes that arose from the study is ‘Exploring identity: Cerebral Palsy as only part of self’.

Respondents agreed that ageing forced them to stop and reflect on who they really were… how they saw themselves (personal identity) and how others perceived them (social identity). There were differing perceptions about the visibility of disability. Several people felt they’d be better understood if they used a wheelchair. Some participants wondered whether their disability, albeit less visible than others’, was even taken into account.

Beth, in her 40s, had this to say: “I don't mean to be mollycoddled but something inside of me broke because I was dealing with this frustration of not being seen and not being heard.… I said [to my brother], ‘You don't see me as disabled do you?’ And he said, ‘No, well you know, I've grown up with you.’ And that's the key—they [my family] don't see me as disabled, which in some ways has been great—that normalisation. But it meant that some crucial needs haven't been met.” A thought-provoking perspective.

On the other hand, the ‘wheelchair experience’ has been awful for others, as Fritha (forty-something) explains: “It's interesting because most people, even now, they see the wheelchair first and then … sort of looking round and they're hoping that, you know, they can talk to someone else, you know.” Some respondents said they’d developed a positive sense of self through childhood experiences and family attitudes. Others related that psychological therapy helped them work through their identities, and for others, establishing a positive sense of personal identity was a work in process.

At Forest Farm we do see the individual with a condition, rather than a condition shared by a group of individuals. We focus on helping each person find their niche … their identity in the big picture that is Forest Farm Centre. Reference: 1. Mudge S, Rosie J, Stott S, et al Ageing with cerebral palsy; what are the health experiences of adults with cerebral palsy? A qualitative study BMJ Open 2016;6:e012551. doi:10.1136/bmjopen-2016- 012551