How to talk about Cerebral Palsy: A guide from an individual’s perspective

By Amy Hogan

Talking about Cerebral Palsy (CP) – Hōkai Nukurangi isn’t something most people grow up learning how to do. Many people with CP find that they don’t need to explain it very often. But when someone new enters their life – a colleague, neighbour, friend, flatmate, support worker, teacher – having a calm, simple way to describe CP can make interactions smoother and reduce awkwardness.

It’s important to acknowledge that there is no right or wrong way to talk about CP in the moment. People explain things differently depending on mood, energy, context, relationship and personal experience.

And while the internet is full of information, that flood can sometimes make everything seem more complicated, not less. A simple, personal explanation usually works best.

Broadly speaking, the best approach is to talk about CP as a condition (what it is and isn’t), how CP specifically affects you and your joints, and things that people can do that are or aren’t helpful. 

Remember, CP is part of your story and therefore should be talked about in a way that you are comfortable with – with whatever level of detail you choose.

What is CP?

Cerebral Palsy is a permanent injury to the developing brain. It affects movement, posture, and sometimes speech or everyday functioning. CP isn’t clinically progressive like other conditions, such as multiple sclerosis, although the body’s demands can change over time. It’s also a very broad term. So broad, in fact, that it doesn’t tell you much on its own.

Two people may both say they “have CP” while having completely different physical, cognitive, sensory, and communication experiences. Some people have visible movement differences; for others, their CP is less obvious. Some have co-occurring challenges  such as sensory processing differences, epilepsy, or challenges with coordination. Furthermore, it’s common to experience increased rates of pain and fatigue  Others may have none of these.

Describing how CP impacts you

When you choose to talk about your CP, often, the most helpful approach is to describe personal and practical impacts, rather than medical details.
For a start, the clinical details aren’t well known and are inconsistently applied within New Zealand. The specifics of medical information aren’t overly useful for whānau, family and friends. Here are some examples of how people have framed their CP in everyday contexts:

• “CP affects my balance, so I use a wheelchair to go longer distances.”
• “My muscles get tight and tired quickly, so I pace myself and take breaks.”
• “I process information slower when I’m fatigued.”
• “My speech can sound unclear when I’m tired, but I’m not confused – I’m just working harder to speak.”

These descriptions help people understand what actually matters in day-to-day interactions. They shift the focus away from the diagnosis and toward real-world needs. Such knowledge can be especially helpful in the lead-up to big events such as weddings or holidays, when the everyday routines and processes may be different, which in turn may exacerbate some CP symptoms like fatigue and cognitive processing challenges.

Describing elements of CP that may need support in everyday settings

Support needs vary widely. For some people, CP affects strength or stability; for others, it may influence speech, fine motor skills, or sensory overload. You can describe what you need in simple, concrete ways that people can apply in everyday settings or in a new clinical context.

• Physical support: Help with transferring, navigating uneven ground, reaching high shelves, or opening heavy doors.
• Communication support: Giving time to speak, not finishing sentences unless invited, and reducing background noise when possible.
• Cognitive or processing support: Providing clear information, repeating things if needed, and allowing extra time for decisions.
• Health support: Awareness of fatigue, pain triggers, heat sensitivity, or the need for scheduled rest.

What is not helpful when providing support

Most unhelpful behaviours come from a place of misunderstanding, rather than malice. People often assume that any information related to CP is relevant to all people, and the same with judging support needs. Some examples of unhelpful behaviour that our members tell us are annoying or frustrating include the following:  

• Over-helping or stepping in too quickly
• Speaking to you as if you are younger or less capable
• Assuming all CP experiences are the same
• Overloading you with online information or advice
• Using language that frames CP as tragedy or heroism.

It’s fair to assume that people who are new to CP or disability always want to get the nuances right the first time. However, the important thing to consider is that people in our lives adapt their approach based on what they learn.

Summary points

There are some key points to remember if the conversation is brief and you don’t need, or want, to go into detail about the nuances of living with CP and the everyday considerations:

• CP is a permanent injury to the developing brain
• CP affects people in different ways
• Support is most effective when tailored to specific elements such as spasticity, balance, fatigue, or speech
• Most people prefer a practical, conversational approach when discussing CP
• Not all aspects of CP are visible, and information overload is common.

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* Amy Hogan is the Cerebral Palsy Society’s Researcher and Member Support Advisor.