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.

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

Learning to Be Okay with Medical Trauma

Friends, a new orthotics consultant referred to my feet as “a deformity” today. Several times. It almost feels like I could just finish the post with this one sentence, hey? Still, I am determined to work through the ugliness of my deepest insecurities here, in a space that continually proves itself to be safe. Let’s start at the beginning, shall we?

The pivotal point in my lack of dedication towards exercise and embracing my disability enough to manage it properly came when I was approximately thirteen. I was beginning to prepare for the possibility of having an operation on my hip, so when my surgeon asked about some background information, I mentioned that I regularly used a stander at home. “What for? Torture? It’s not going to make any difference whatsoever” was his reply, which is something that I have never forgotten. Initially, I was genuinely thrilled by his professional certainty, I’m not going to lie. I mean, it was boring and sometimes painful, so I was willing to accept any excuse not to put myself through that. Pretty quickly, I decided to stop with all of the things that disabled children are supposed to do, including physiotherapy. I couldn’t understand why I should bother taking care of myself in ways that only exaggerated my sense of otherness, if it was ultimately not going to improve my health, you know? For a long time, this approach felt like a Good Thing. If I could function without relying upon these extras, then I was somehow less disabled and therefore living life more fully than anyone had otherwise expected. Little did I know that it would instead take me a whole decade to begin addressing this as internalised ableism.

Aside from the turmoil that I’m going through as I type this: so far, I am having the best year of my life. I am really, truly starting to get my shit together. When I read back through older posts, it’s so clear from my writing, too. For that, I am endlessly proud of myself. However, I have been getting increasingly anxious that this self-improvement has arrived too late, leaving my health set to follow a downwards trajectory from here, no matter what I do. I had been trying to focus on how irrational these thoughts sounded, until today, when I heard: “some of this deformity could have been prevented if you’d had intervention sooner”. Genuine question: what am I supposed to do with that information? It’s not like I can reverse any of the choices that led me here, which means that I just feel guilty about it instead. Fun.

A picture of Danielle with her brother, Jack, from when they were small children. They are in a twin buggy, both wearing sunglasses and blue hats. Danielle is wearing a green jumper with white leggings. Jack is wearing a white top with black stripes and black trousers.
Just a disabled child and her brother wearing funky clothes in the 90s for your enjoyment.

Even before this happened, it’s an issue that I discuss with my physiotherapist often. I suppose that she has become something of a regular therapist, too. But I do get frustrated with my younger self and it’s not always easy to move forward from. When I was growing up as a visibly disabled child, the sense of exposure felt almost violent. I wasn’t represented anywhere by the people that I knew or the environments that I found myself in. I wanted nothing more than to exist quietly and fit into the groups that had always eluded me. Back then, just making it through to the end of every day was difficult enough for my brain to handle, without trying to simultaneously contemplate what my adulthood might look like. Let’s be real: I am living that now and I still don’t have many of the answers.

Since this experience still feels vulnerable on my heart, I’m not entirely sure how to conclude. There is one thing that I’m absolutely certain of, though: the disabled community is not defined by our experiences with shitty medical professionals. In particular, right now, the treatment of Myalgic Encephalomyelitis (also known as Chronic Fatigue Syndrome) needs to be radically overhauled without any further delays. Exercising is harmful when your body is not physically capable or prepared for it — and it turns out that symptoms don’t just magically disappear when you talk about them in therapy. Shocker. Sign the petition for change here.

Éowyn, you have changed my whole life in the most beautiful way. Thank-you for making it all worthwhile. I love you so much and will never allow you to forget how magical you are. xxx