Cerebral palsy isn’t a one-size-fits-all condition. It can be frustrating, and it's a lifelong journey. You might see a wheelchair or an unsteady walk, or notice a speech difference, and that’s as far as it goes. But living with cerebral palsy (CP) is a complex experience that goes beyond a diagnosis or a visible limp.
So here’s what I wish people understood. Not in a sympathy-seeking way. Just honestly.
Unlike some other conditions, cerebral palsy is not progressive, meaning it does not get worse over time. It results from brain damage, usually before, during, or shortly after birth, and affects a person's movement, muscle tone, and posture.
I was born breech, not breathing, and left without oxygen for too long. That’s all it took. No two people with CP are the same; how it affects your body depends on the area and severity of the brain damage.
There are three main types:
● Spastic CP – stiff, tight muscles
● Ataxic CP – poor coordination and balance
● Dyskinetic CP – involuntary movements and fluctuating muscle tone
Some people have one type, and some have a mix like mine. There’s no upgrade, no fix. It’s a lifelong condition. We learn to adapt, not recover.
You’re not just dealing with mobility issues. There’s:
● Muscle stiffness that worsens in cold weather
● Pain from tight joints and spasms
● Fatigue that kicks in quicker than you’d think
● Communication difficulties (mine comes with a severe speech impediment)
● Extra diagnoses – epilepsy, cleft palate, poor coordination – many of us get a few ‘add-ons’
For me, right-side tightness makes walking harder as I get older. I’ve taken more falls in winter than I care to count, broken bones, bruised pride, the lot. It affects what I wear, where I go, even what time I leave the house. You don’t think about that when you hear 'CP.' But I live it daily.
Imagine trying your hardest at something; your body just won’t do it. Or walking into a room and being judged for how you move or talk. It chips away at your confidence. Not always because of the CP itself, but because of how society reacts to it.
People sometimes talk over me. They ask my friends about me instead of speaking to me directly . Some assume I don’t understand or can’t reply. That’s not just annoying, it’s dehumanising.
I’ve had moments of anger, anxiety, and self-doubt. But here’s the thing, they’re not because I’m disabled. They’re because I live in a world not built for people like me.
I understand the impulse to help, and I appreciate it. But helping without asking first can sometimes do more harm than good. For instance, someone once grabbed me by the arm to 'help' me cross the road, even though the traffic had stopped and I had it under control . That sudden grab? It's not helpful. It's just scary. So, the next time you want to assist, just ask first.
You want to be kind? Great. Just ask, “Do you need a hand?” If I say no, respect that. If I say yes, excellent. It’s not rocket science.
Cerebral palsy is part of me. It always will be. It affects how I walk, how I speak, how I move, and how I live. But it doesn’t define my intelligence, aspirations, or value. I can be stubborn, cheeky, witty, outspoken, and talented like anyone else.
So, next time you see someone with CP, don’t stare, don’t assume, and don’t talk to the person with them instead. Just treat them as you would anyone else. Offer your help if you think they might need it, but always ask first. And remember, they are not their condition. They have their own unique personality, interests, and talents. Acknowledge these aspects of their identity when you interact with them.
That’s all we want; to be treated like people.
I discuss all of the above in more detail in my autobiography, Cerebral Palsy And Me, which you can order here: www.thedisabledwriter.co.uk/books/
