Forty Years Later: The Viewpoint of Cerebral Palsy from a Sibling’s Perspective.

SaraC_Scope

For World CP Day 6 October 2025.

Warning- This article might contain information which some might find upsetting.

When parents received a diagnosis of cerebral palsy and epilepsy in the 1970s and 1980s, it was an emotionally and practically overwhelming time. But what if you’re a sibling in this scenario? How does your understanding of disability shape the person you become?

In the late 20th century, the language and culture associated with cerebral palsy were vastly different to the language we use in the 21st century. There was insufficient information from health professionals about the care of a child with cerebral palsy. Many parents, rightly or wrongly, encouraged their children to conform to societal norms to normalise the family unit. They lacked the tools, resources and capacity to seek support.

Feelings of shame and guilt played a considerable role in this decision.

Without realising, this behaviour actually fragmented relationships. As everything was normalised, this led to other sibling developing only the basic skills to support their disabled brother or sister.

Two sisters have recently reflected on their experiences growing up in a family with disabilities in the 80s and 90s. During a candid discussion, the younger sibling, Ava, expressed her emotions about that period. The older sister, Eva, has cerebral palsy and epilepsy.

Ava- “I’m angry you were raised to accept that you had a 'bad hand.” We weren’t taught about what actually happened to you.”

Ava- “I remember seeing you unconscious when we were home alone and having to give you your medication to stop the seizures.”

Ava- “If our parents had explained to me about your CP and epilepsy when I was young, I could’ve armed myself to help you. All I knew was that I had to be your big little sister, but I never knew why…”

This final comment articulates the difference between the two generations.

Ava- “I wish they’d taught us to be more open and to celebrate difference, instead of panicking that our differences would make people judge us.”

Ava and Eva now have a close relationship. The conversation was triggered by recent family circumstances, which stirred up emotions, leading Ava to share her feelings about her experiences as a young carer.

It was difficult for Eva to hear her sister's experience, as her childhood as a disabled person was very different. She was glad Ava spoke openly with her. Eva is still learning about how her disabilities impact her now and in the future. She has since shared information with Ava, which she has only recently discovered. Ava wants to be part of this ongoing learning process.

At the ages of 46 and 49, although they have had different life experiences, their relationship has become stronger in recent years, and the women know that as siblings, they are Unique and United.