Celebrating Cerebral Palsy

Earlier this week, on October 6th, it was World Cerebral Palsy Day. By the time that I realised, it was too late to make any kind of meaningful statement, though I’m proud of myself for taking a moment now. In truth, even my past self from just a year ago would have been shocked that I’m finding something to celebrate. Yet, here I am.

I was born in April of 1997, a whole three months earlier than expected, at twenty-seven weeks. Back then, medical interventions were not what they are now, so my survival was a miracle in itself. I mean, my nurses at the Trevor Mann Baby Unit had a cake when I reached a kilo in weight. One single kilo. Whenever my parents left the hospital after visiting me, I would generally stop breathing. These days, we make jokes that I did this just to be dramatic and get their attention, even though the reality would have definitely been much scarier for them. Eventually, the doctors got used to this routine and discovered that they could bring me back by simply touching my feet, which are still incredibly ticklish now. The idea makes me smile, for some reason. Still, once everything was slightly more stable, attention turned to uncovering how my development might be affected by being born so prematurely. This is where the story gets interesting, I suppose.

It was initially hoped that I would just reach certain milestones a little later than everyone else, especially since my twin brother was ultimately healthy. However, after it became apparent that my situation would be somewhat more complex, scans were able to confirm that I had cysts on my brain. Fun fact: I have only relatively recently discovered that this means parts of my brain are actually now missing. How oddly cool is that? But even getting a diagnosis of Cerebral Palsy doesn’t immediately provide any clarity. There are a few different types, which all present themselves differently in each individual. No person with this disability has exactly the same experience, which is perhaps the most isolating part about it. So, naturally, my parents were hit with all of the worst-case scenarios. They were told that I wouldn’t be able to walk, talk, feed myself or even sit up independently.

If you’re reading this, you know that I have already achieved so much more than anybody first expected of me. My mum had to fight for me to be given a chance in mainstream education, which is maybe why my degree is so precious. Something about it feels very deeply empowering. With that said, I have sometimes felt like the living embodiment of a juxtaposition: so much ability, yet still so dependent. There are so many of the mundane daily tasks that require being able to walk, or at least stand, in order to do them without assistance from anyone else. Whilst I can feed myself, I still find it difficult to cut meals up into manageable bites, despite my best efforts. There is no denying that it can be a frustrating journey.

A screenshot of a Tweet by Eddie Ndopu, which reads: “Ableism doesn’t just dehumanize disabled people, it strips non-disabled people of their own humanity. We’re all harmed by the belief that there is just one desirable way of being human. Disabled people show us more beautiful, more expansive, more honest ways of being human.”
I am working on celebrating the more beautiful, expansive and honest version of this human experience today.

Interestingly, this piece was (at least partly) inspired by mum finding an old copy of HELLO! magazine, which a Young Danielle featured in. Fiona Bruce came to visit Chailey Heritage, where I spent a lot of time growing up, mostly to attend various appointments. As an organisation, they specialise in Cerebral Palsy and other neurological conditions, so she took pictures with some of the children there. In the accompanying interview, she spoke about how she had worried over the possibility of having a disabled child throughout her second pregnancy, revealing that she hadn’t known how she would cope. Although it never happened, she mentioned how spending the day with these disabled children and their families (myself included) had given her cause to reflect upon her comparatively “selfish existence”. I don’t know why, but something about this particular quote annoyed me, even when I tried to think about it from the perspective of society in 2002. See, the implication is that disabled children are burdens. Maybe I could forgive this narrative, except for the fact that nothing has changed. Opinions are still the same.

I used to hate my body and all that it represents. Before you say it, this was not in the same way that everyone dislikes certain aspects of their body. It was gut-wrenching and visceral. Physically painful, at times, too. But now, I have accepted it, in the most beautiful way. Although it’s not the ideal for anyone, it’s my normal. Having Quadriplegic Cerebral Palsy has shaped a lot about who I am, both consciously and unconsciously. You know what? For once, I actually like that person. I think she’s pretty cool.

Owen, loving you is the greatest honour of my life. I am simply never going to shut up about how proud I am. xxx

3 thoughts on “Celebrating Cerebral Palsy

  1. First, the story about your feet is just adorable. I mean, if we could be revived by our feet…well, that’s really the stuff of science fiction, isn’t it? And maybe some people’s worst nightmares, the ones that have a complete aversion towards feet. And I think brains are the final frontier. There is so much we don’t know. Why you can have so much missing but you function at such a high capacity is just a wonder in itself. So the obvious conclusion, at least to me, is that you must have started with a mega-super-brain, one not of this earth, very evolved. You basically had to dumb it down to blend in. And yay for Owen!

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    1. I love this comment SO much. Being kind to myself is very much a process and I don’t always succeed. This new perspective is genuinely about to change my whole life, lmao. Thank-you. It truly means so much to me. You have become such a good friend and I want to offer this reminder that you have a very important place here 🤍

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      1. Oh, my dear friend, those spaces they left you are actually neighboring galaxies. You carry a lot of power and knowledge in your brain.

        I belong to a group where we talk about our gifts, and you can take this any way you would like. But most of us believe in many lifetimes, and angels, and a whole host of other things. But we all collectively believe or understand that the human condition serves a purpose, and that is to learn lessons. And if we have multiple lifetimes in human forms, it’s to learn a number of different lessons. And if we are especially physically sick in one lifetime, it’s probably going to be the last time on Earth, because it’s the last big lesson. I personally know why I’m this sick and what I’m supposed to do with it, and pretty much how long I’m going to live. (You’re stuck with me for a good, long while.)

        So, have you started thinking about what your purpose is? If you know what your purpose is, do you think it’s possible to be kinder to yourself? You don’t HAVE to know it. When I was in my 20s I thought I knew it, but I was so very wrong. My thinking is, if you can’t be kind to yourself, there’s no way you can succeed. No one thrives under a tyrannical boss. Or a worn out boss. You get the idea. 🙂

        Sending you some hugs, and as always, thank you for your kind words.

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