I Will Never Be Able to Walk (& That is Not Okay)

If I can manage to write all of this without spontaneously bursting into tears, I will consider that to be an achievement. See, I had been doing so well, friends. For the first time ever, I would have actually described myself as stable, both emotionally and physically. Then, almost a month ago now, it all changed. My whole world was shattered within one (approximately) thirty-minute conversation. As always, it is my sole responsibility to collect these pieces and put them back together, in whatever way I can. By now, it will not surprise you to know that writing felt like the answer. So, before we begin this particular group therapy session, I want to thank you for being here to hold my hand. I appreciate it more than ever. Deep breaths.

It all started when I decided to make an appointment with a new physiotherapist. I love my current one, but the rates are also expensive, you know? So, I did a few small exercises in front of two people I’d never met before, then sat down with them to chat about their overall assessment. This is where it gets interesting: they told me that I should be walking by now. They followed this by saying (quite nonchalantly) that if I’d had the right intervention as a child, I would be walking by now. At this point, I stopped being able to really hear or process any of it, but I was aware of one thing — they wanted to try and make it happen. Not only that, but they firmly believed it was possible, without making any promises.

So far, this might all sound like a Good Thing, which is exactly what makes it so dangerous. Firstly, they implied that I had simply always been too lazy to bother. In response to this, I held it together for as long as necessary, then promptly burst into tears once I reached the car. These tears were ugly and produced from the deepest depths of my soul, so let’s unpack that. Like I said, group therapy. To be brutally honest, I generally make it through every day by just not thinking about my inability to walk. Compartmentalising it. Not allowing my brain to be consumed by how different life could (and arguably should) have been. Except now, suddenly, I had no choice. Every time I blinked, I was drowned by these scenarios in quick succession — almost like being in a parallel universe. Despite logic telling me that I have always fallen to the ground whenever I have attempted to stand for more than half a second — despite knowing that it’s impossible for this reality to change —, there was still hope.

Danielle, a white woman with brown hair, is pouting at the camera. She wanted to do a peace sign and convey her distress, but her Cerebral Palsy hands wouldn’t allow her to do that and hold the phone simultaneously. Her skin is red and blotchy. Her blue eyes also look red and it’s clear she’s been crying, but she’s trying to style it out. She is laying on her bed and wearing a white t-shirt with red sleeves, which has a visible Jack Wills logo.
I took this crying selfie about an hour after the appointment, to make jokes with my best friend, Imogen. Later, I ordered my entire family pizza for lunch. It helped me to cope.

Similarly, my parents also spent the next week blaming themselves. Analysing every decision made when I was younger. Wondering where it all went wrong — and if all of this had left me more disabled than I might otherwise have been. Then, we asked my current physiotherapist for her opinion on it all. She explained that nothing about our other encounter was based in fact: although some people with Cerebral Palsy can stand and walk, it was not (and never has been) a possibility for me. My legs just don’t operate in that way.

I was supposed to feel relieved upon hearing this, I know. It is what it is. If I’m being brutally honest, though: it feels like all of the steps I have taken towards self-acceptance over the last ten years were unravelled, just for the sake of hope. I have always resented the limitations that my body has placed upon me, however quietly. Never fully accepted how suffocating this version of reality can be – or how easily it’s taken for granted by everyone else around me. Still, this time, I will not bury it. I will not pretend. I will feel all of the intensely painful and complex parts to this puzzle, in its entirety. Today, I choose to let go and be liberated by the promise that disabled is beautiful, if not always easy.

Olive, thank-you for being ready to openly discuss these complexities with me. When our futures are bright, we will have done that for ourselves and by ourselves. How badass. Rebekah, if you’re reading this: thank-you for all that you are, even (and especially) when it’s messy. xxx

The Reality of Getting Older as a Disabled Person

[Edited 29.03.2022]

At least once a year, I will have an existential crisis about what will happen to me when I get older. I’m sure that everyone understands these feelings to a certain extent, but there’s something undeniably violent and all-consuming about it when you’re disabled. I mean, my mum has been pretty much solely responsible for the most intimate aspects of my care since I was born, so what happens when that can no longer be the case? These days, my plans for the future are perhaps lonelier and more isolated than ever, simply because I’d hoped that so much could be different. Because even being my most independent self is only possible with cooperation from other people, you know? My logical brain is fully aware that this is completely insignificant when the caregiver comes from a place of love, but there’s still no escaping the internalised bullshit. The idea that I don’t deserve it. The idea that it will inevitably become Too Much. It feels like A Lot to ask of another person, which adds yet another squishy layer of vulnerability to my existence. (Side note: thanks for that, Dr Phil.)

In order to counteract this, there is always a Plan B. This is something that is true to the disabled experience as a whole, I think. When nothing ever goes right or stays consistent, it becomes important to understand how to survive if it all disappears. According to Google, Cerebral Palsy is considered to be a “non-progressive but often changing condition”, which essentially means that there are no clear answers, not least because it affects every individual differently. As things stand (no pun intended), I can lift my own body weight and transfer independently from my electric wheelchair, if I’m going to bed or having a shower. Will I still be able to do these things in five years? Stay tuned to find out, friends.

Young Danielle is pictured with her mum, posing next to Noddy. There is a yellow wall in the background. Danielle’s head is resting on her mum’s chest and she’s wearing a yellow cardigan with a green/pink pattern. She’s looking at the camera with a finger in her mouth. Her mum is wearing a blue top with a blue jacket, looking at the camera and smiling.
Baby Danielle was adorable, I know. I also used to have a lot of trouble with my neck and could only hold my head at a side angle. It’s good to recognise some positive progress, too. PS: tell my mum that she looks pretty. xoxo

When my thoughts were in their messiest and most anxious form, I shared them with my beautiful friend, Hannah. I knew with absolute certainty that she would say something validating, which I’d like to include here: “people like us feel like we can only plan ahead a few pages at a time because the BIG FUTURE feels like it shouldn’t belong to us. We’ve never seen examples of it before”.

Even just staring at her words on the screen has made my chest feel a little tighter, simply because they’re so accurate. With that said, the whole point of choosing to be vulnerable on the internet (again) is to emphasise that all hope is not lost. Although there are so many factors outside of our control, we can still exist loudly. We have every right to romanticise our lives in whatever way feels accessible. Be okay with small goals and dare to dream about big ones, too. We deserve it, we deserve it, we deserve it. Repeat until believed. I’m right there on the wild ride with you. If it helps: we were conditioned to believe that our lives are forever destined to be smaller than everyone else’s, you know? Therefore, any step towards disabled joy (however small) is an act of rebellion. How sexy and cool is that?!?! If nothing else, I am determined to create examples for the future generation of disabled children and people.

PS: are you still reading? I recently started a volunteer role at Scope, which you’ll already know, if you follow me on Instagram. Anyway, part of this will involve writing some blog posts for their community(!!!) and you can find my first one here, which covers my experiences of being lonely throughout the pandemic. All of the fun stuff.

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. 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. xxx