My Parents and My Disability: Not Too Many Complaints

‘Why? Why? But why? No really, why?’

I have a distinct memory of a conversation I struck up with my mother. I knew that I was disabled. I knew my left arm and leg didn’t do as much as I would like them to do – but I wanted to know why. Brain damage is hard to explain from lay person to lay person. Harder still from adult to child. And hardest (as I discovered the hard way) from child to child.

My mother tried to explain that I had lost oxygen in the third trimester of pregnancy.

‘But what even is oxygen? What even is a trimester?’

Somehow, I conjectured that the loss of oxygen meant I had a hole in my brain. At this point in my life, I had fallen up the stairs (see: cerebral palsy: bad coordination: falls up the stairs [and yes, again, it was up not down, up]) and ended up with a hole in my head. I needed stitches. Eventually, I ended up with a scar on the left side of my face. Even as a child, I thought this was very fitting given that my name is Scarlett.

‘Do I still have a hole in my brain?’

I was visualising a great big dark expanse. Maybe oozing with blood. And gore. Or even a black hole, sci-fi style.

‘No, no, you don’t have a hole in your brain…’

That was kinda disappointing…

‘But as I had once had hole in my brain, I must now have a scar in my brain…’

To be perfectly honest, I thought this was cool. My name was Scarlett because I had a scar on my brain, just like I did on my face. My mum tried to explain that I’d been diagnosed with CP as a toddler, well after I’d been named Scarlett – but I didn’t care. It worked. If you were going to write a story about a girl with a scar on her brain, you’d name her Scarlett, wouldn’t you?

Between these confused explanations and over-analysing into the origins of my name, one thing always rang true, there was never any announcement that I had CP. My memory of visiting physiotherapists and having orthotics made stretches as far back as any memory. The words “disability”, “cerebral palsy”, and “hemiplegia” were all normal to me. They were never ever hidden from me. If they had been, then it is more likely that I would have been afraid of them, that I would have attached shame to them, that I would not have known how to use them. We had child-friendly substitutes for words too. Affectionally, we called my left CP hand, “lefty”, and that was my understanding of the word well before I had any grasp of politics. But the point is that the medical words were never kept from me. I knew why I had to do physio. I knew why I had to wear splints. Sometimes, my understanding was not complete, given that it was a difficult subject matter to translate into kid-language. But I always had a working understanding of what was up with my body.

It was not until I was older that I realised this was not the case for everyone. My doctor told me that with some of his patients, parents asked him to monitor his language. To not say spasticity. Or disability. Or cerebral palsy. Whereas, with me, there was no flinching at any of these words.

I understand why some parents would want this. It is tough being a disabled kid. Unfortunately, the focus of the playground bully can often be your disability. So, I understand why some parents might feel they are protecting their child by not using these words.

But what really hit me is that one day, the parent has to hand over the keys. The child becomes an adult and is in charge of their medical files. How does that work if you’re not adjusted to the even the word “disability”?

Ultimately, it sounds disempowering.

So, I’m glad that I was raised by parents who never treated disability like a dirty word. Parents who were not afraid to tread the ins-and-outs of trimesters and oxygen and brain damage with an inquisitive child. Parents who did their best to make my own medical condition something that my tiny brain could understand.

This ties into the next thing my parents did very well: they never ever lost sight of the fact that it was my body, not theirs. My Dad used to say: it is you who has to live with CP, not us. They acknowledged how being nondisabled limited their ability to fully understand what I was going through. As my parents, they were part of the journey. They took me to my appointments; put my splints on in the mornings; listened to my rants about how physically impossible certain subjects at school were. They sympathised, certainly. But they never claimed to walk a mile in my shoes.[2] I did not find this daunting: it was simply truthful. It was not lonely either, because I still had their support, even if they were not living my life. I felt respected by my parents taking this position. I can still hear my Dad saying it in the waiting area of an orthotics appointment.

‘It is you who has to live with CP, not us.’

Of course, my parents (and others) have all lived with my CP in a sense. But the point was that it was me who had to live my life in my disabled body until death do us part.

This mindset also meant that I was increasingly included in decision-making when it came to my disability. My parents saw themselves as custodians of my body, looking after my body until an eventual adult me was able to take full control. They were hesitant to make any life-changing decisions for me. They were cautious. As parents, we all make decisions for our children and their bodies. Whether that be the food they eat; the vaccines we give or do not give them; the medicine we choose to give them. But with a disabled child, more and more of these decisions crop up. My parents wanted me to be as involved in decision-making as possible. They encouraged me to ask questions at appointments. To be as in-the-know as I could be.

We did not always agree. They had great concerns for my physical body whilst I was more focused on the perils of being a teenager, which sometimes meant disregarding well-meaning advice. They could see long-term: a year still felt like a very long stretch of time to me. They had more of an ear to the suggestions of professionals; I had more of an ear to my increasingly angsty heart.

When I was fifteen, I had an operation on the fingers on my left hand. They had become stiff and incredibly painful. I had what is called a Swan Neck deformity (check it out for its quirky name alone). Although I was only fifteen, I felt that it was my decision to have the operation. I was supported by my parents. It had been thought through together. But the message stood clear: it was me who was going to live with CP, not them.

By the time I was eighteen, and became in full official control of my life, the transition was seamless. I knew the words to use. The people to contact. The history of my body.

[1] My parents didn’t ask me to write this. They won’t know about its existence until its published. [2] One foot in a very big shoe to accommodate for my rigid splint and the other over-worn from having most of my weight carried on that side.