“What’s wrong with your legs?”
Written for World Cerebral Palsy Day.
“What’s wrong with your legs?”
Five words I’ve had said to me countless numbers of times by both children and adults in my thirty years on this earth. The answer has never changed during that time and it is;
“I have Cerebral Palsy.”
The older I have become, and the more times I’ve had to field that question, it’s gotten easier to say the answer and embrace what those words mean.
Cerebral Palsy is the most common physical disability in children and on average occurs in 1 in every 700 births. It is caused by an injury to the developing brain that takes place either before or shortly after birth. It is a group of lifelong conditions that affect movement and co-ordination that ranges in severity, so two people can suffer from Cerebral Palsy in very different ways. It is a lifelong permanent condition.
Today (October 6th) is World Cerebral Palsy Day, a day to recognise and show support to sufferers like myself as well as to highlight the condition itself. World Cerebral Palsy Day has always mentally been on my calendar, but, until now, I’ve never done much about acknowledging or celebrating it.
As I have begun to feel more comfortable with sharing my experiences living with a disability, I feel that it’s important to take the opportunity on World Cerebral Palsy Day to reflect on the journey I have been on with the condition playing a big part in my early development and the way I have navigated situations throughout life.
‘There are several events in my life that I’m sure you have also experienced similarly — starting a new school or college, going to University, attending a job interview or meeting someone for a first date. If truth be told, I’ve probably approached every one of those with the feeling in the back of my mind that someone is going to judge me, purely based on something I have no control over, before I’ve even said a single word.’
I was born twelve weeks premature in July of 1991; in fact, my actual due date was just a few days from World CP Day. I weighed not much more than a couple of bags of sugar and was in the hospital for ten weeks before I was allowed home. Below is a photo of me in my incubator — my parents had stuck an expired credit card to the side of it to illustrate the fact that my lower leg was similar in size.
It’s difficult for me to pinpoint the exact moment I realised I was different from the other children around me, but I acknowledged there were some key differences between me and my peers in my first few years of school. The other kids didn’t have to do physiotherapy or wear DAFO’s on their legs. The other kids could run and could sit on the floor cross-legged — I had a special step that slotted into one of the school chairs. This was first to help improve my posture but also simply because I was physically unable to cross my legs.
I had several operations in my adolescence, the results of which are the main reason I am still able to walk today — I’m forever grateful to the specialist team at The Royal London Hospital who did so much to give me the best chance of a ‘normal’ life experience. After these operations, both of my legs would usually be in plaster for around 6–8 weeks. I’d come back to school and all of my classmates would assume that I’d broken both of my legs!
Growing up I was incredibly uncomfortable discussing my disability with anyone — if you told my younger self I was now actively posting my experiences and talking about my Cerebral Palsy on the internet, I’m not sure what he’d make of it!
I can remember being probably around age ten and playing in the street I grew up in with some of the other neighbour kids. I was always included and made to feel welcome in whatever was being played. However I remember one day, there was a child I did not recognise. I think he was a cousin of one of the kids who lived in my street. I remember him suddenly saying “excuse me, why do you walk like this?” He then proceeded to turn both of his feet inwards and awkwardly walk up and down on the road.
My heart sank. I remember thinking to myself:
“Is that really how other people see me?”
None of the children on the street said anything. On reflection, we were all quite young so nobody probably knew what they should say. I remember just quietly making my way back to my house. I never mentioned that interaction to anyone.
Situations such as that one became more common where people would ask “what’s wrong”.
I once went to an optician's appointment and as I limped from the waiting area towards the examination room, the optician asked “what happened to your leg?” A moment of panic struck as I didn’t really want to disclose my disability in front of a waiting room of perfect strangers, so I told a lie and said I’d got injured playing football. Somehow, she completely brought the story.
I’ve written previously about my experience with using mobility aids more recently. I only use them usually when navigating my way outside on surfaces like roads and pavements. If I see someone who I haven’t seen in a while — which, due to Covid, is pretty common — they’ll see my stick or the knee support I wear and say ‘OH MY GOD! What did you do!?’ When I simply state it’s just part and parcel of living with Cerebral Palsy, they often look disheartened at the fact that the answer, to their shock, isn’t a more exciting story.
I count myself somewhat fortunate that my Cerebral Palsy is what the medical world refers to as ‘spastic diplegia’ — to put that more simply, it only affects my lower limbs. I do suffer from some mild dexterity issues with my hands but on the whole, they are fairly unaffected.
Because of this, when I am sat down, my disability isn’t always noticeable; it’s only when I get up and move that new people will get the sense something is not quite right. This of course has led to many interactions involving the phrase ‘But, you don’t look disabled.’ Now, whilst you may have every intention of that sounding sincere and genuine, it really isn’t a compliment! Mackenzie Saunders wrote a great piece recently on this very topic; I’ve placed it below.
Living with Cerebral Palsy has forced me to see and interact with the world around me a lot differently than many others, but I wouldn’t change that for anything.
For more information on Cerebral Palsy and World Cerebral Palsy Day, please visit the website
Other Medium Articles on the subject of Cerebral Palsy:
Written by Molly Wiesman, Expedition Empower & Kelly Dawson
