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.

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

A Love Letter to Maeve and Isaac from Sex Education

Throughout my time at school, the sex education that we received just simply never applied to me. The messages were very much tailored towards people without limited mobility, for example. I would ask questions about how it could all be made more accessible sometimes, when I was feeling brave, yet always got the same answer: I’ll be honest with you, I don’t know. Looking back, I realise that nobody had prepared themselves for this. Being a wheelchair user gave other people permission to perceive me with an innocence that they wouldn’t attach to everyone else my age, I suppose. Besides, it didn’t feel important for them to get educated or provide any relevant information because they couldn’t imagine someone else wanting to explore with me, either. Instead, they would generally choose to make jokes about my dating life, which isn’t really possible to shake off. At this point, it’s alarmingly easy to become consumed with the narrative that disabled bodies are inherently undesirable and expecting otherwise is naïve. I used to cry a lot about that. There is something especially cruel about having these needs whilst simultaneously being told by society at large that they don’t deserve to be fulfilled. But I could still sit in the classes and listen to my peers be taught about the importance of their own pleasure, though. Anything for the pretence of inclusivity.

So, with all of this, I’m not ashamed to say that I cried when I first watched the sex scene between Maeve and Isaac on Sex Education. Whilst I understand that the pairing itself is a somewhat controversial one, this arguably makes George Robinson’s character even more important. I mean, how refreshing is it for a disabled person not to be portrayed as entirely innocent and pure? We are complex and unlikeable at times, too. Even before any sex was involved, I had never seen representation that felt so real. I had never seen someone like me, a wheelchair user, being treated like an adult by other people before. Isaac exists unapologetically loudly in the lives of everyone around him, which is so incredibly validating to watch, as someone who’s spent so many years feeling invisible within these stories.

You’re welcome. You can follow Intimately on Instagram here.

Moving on, the sexual tension between these characters led to a quietly intimate conversation about what would be most comfortable and pleasurable for them both. This communication is rarely present in any media portrayals of sex, which gives the false impression that it isn’t necessary for a good time. Talk to each other, people. But these questions were handled with great care – they weren’t there to satisfy morbid curiosities or create shock value. In that moment, it was just about two people wanting to enjoy themselves and respect each other’s boundaries. Really, is there anything sexier than that?

Perhaps my favourite part of this, though, came when Maeve told her best friend afterwards. There were no questions about the mechanics at all, which I had been expecting. Bracing myself to feel weird and awkward. To my pleasant surprise, it was just immediately accepted. Because it doesn’t matter. A wild revelation, I know, but these experiences are no less valid because they exist outside of the conventional.

In short, this is why multi-faceted media representations of disabled people are invaluable. Not only do they show that we are capable and deserving of love beyond anyone’s wildest expectations, but they also challenge everyone else to do better and get creative when it comes to intimacy. I have always thought that conventional is boring, anyway. I would like to thank the writers at Netflix for breaking down these barriers, which I wouldn’t have been brave enough to do alone.

PS: I also wrote a vulnerable piece for Scope about what it means to be a disabled person in a relationship and all the effort that it’s taken to believe I’m deserving, which you can read here.

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.

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.

Anxiety Makes Me Pull My Hair Out

When I was in school, studying for my exams felt like the most important thing in the world. It’s hard to explain now that I have completely left academia and am more emotionally distanced from that place, but I quickly became convinced that my existence only mattered if I got good grades, you know? As regular readers of this blog will already know, I was somewhat surrounded by people that didn’t believe I belonged in the mainstream education system, most especially my peers and teachers. With this, of course, there was always something to prove. Nobody was at all sure that my life would amount to anything meaningful beyond my schooling, so this was the one thing that I had. My one chance to show everyone that my brain didn’t always let me down. My one chance to provide them with evidence that I wasn’t completely useless. Although my family were endlessly supportive regardless and this pressure came from nowhere except myself, it was a level of stress that I wasn’t equipped to handle in a healthy way.

Eventually, I started pulling my eyelashes out, which is about as sexy and glamorous as it sounds. I couldn’t explain why, I just knew that this behaviour made everything feel more manageable for a little while. However, it wasn’t long before this was bad enough for me to develop infections even more frequently than I’d otherwise been used to, so I had to stop. I had to find another way to feel in control. Unfortunately, though, the story doesn’t end here. It turns out that this type of thing can very easily twist into a compulsion. Translation: stopping is far from simple — especially when you’re a teenager. It’s actually quite scary.

I was okay for a couple of months, if I’m recalling properly, then I moved onto my eyebrows. I can’t remember what triggered this exactly, but I was able to rationalise it in the beginning: just like waxing, if I can manage not to get carried away. Without even always being consciously aware of it, I have now been pulling my hair out in various places for the past eight years. What started as a way of finding control within stressful situations has instead started to control me. Whenever I experience any particularly overwhelming emotions (good or bad), this is where I turn, even if only through boredom.

I’m leaving this here as a reminder for myself and everyone else. Let’s try and be gentle with ourselves, friends. You can follow the artist, Matilda, on Instagram here.

So, why am I choosing to write about it now, with no inspirational story of recovery or overcoming hardships? Because in 2022, I’m determined not to run away from my problems — or hide them in order to make my presence more digestible for everyone else. I intend to be painfully honest about these things, even when they’re not pretty. I intend to set myself free from shame. Mental illness can be messy sometimes — that’s always important to talk about, even before it becomes cool in October. It’s hard to be a disabled person right now, let’s be honest. Still, this is me, deciding to take back power and believe that my beautifully complicated self is worth investing in.

Megan, thank-you for always being so open about your own journey and inspiring me to be brave for a second, even without realising it. Imogen, thank-you for the pep talk when I got scared to post this. You are wonderful. xxx

Reflections on Healthy Privilege: An Open Letter from Two Disabled People

I have always found it very easy to resent the healthy people in my life. Honestly, learning to feel any other way about it has taken a lot of work and healing, particularly within the lens of a global pandemic. It’s also a topic with many different and complex nuances, which is why it felt important to collaborate with my dear friend, Lexi. By having these conversations from more than one perspective, it’s easier to see where the wider issues are — and what work needs to be done when moving past them. So, here we go, sharing stories and being vulnerable.

When I was about ten, we were given an assessed group project. Whilst I don’t remember what we were researching, I do remember working on it at a friend’s house. At some point during the day, I had to call my mum about something, so everyone else went outside on the trampoline. I could hear them laughing. Having a good time. As children should — but without me. It was a type of joy that I could never access. For some reason, I found the enormity of these emotions to be overwhelming, so asked if my mum would collect me. When my friends came back inside and I explained the situation, one of them said: “what are you going to do, just never leave the house and cry every time you see anyone walking around town?”. Now, we were ten. It was impossible for her to even begin understanding what my brain was going through, let alone think of a more sensitive way to discuss it with me. I still don’t have the answers myself. Most of the adults in my life have struggled, too. There is no simple solution. Later, a conversation between our respective mothers looked something like this: “it’s difficult, isn’t it?”. I have never forgotten my mum’s response. “It is. I think it’s only going to get worse as she gets older, unfortunately”. Spoiler alert, friends: it did, in fact, get worse. Much worse. But then it eventually got better, which is what I want to focus on.

Sometimes, I will reject your social invitation simply because I don’t want to go, I’ll be honest. But you get the idea.

At this point, I will humbly step aside from talking about myself (gasp!) and give Lexi the space to unpack her feelings, too. Buckle up. Side note: you’re welcome to read these words in her New York accent because it automatically makes everything she says infinitely cooler than me:

It is often difficult to put limitations on myself to prevent burnout. On one hand, I’d love to be able to do things the way healthy people my age can. On the other hand, there is the painful truth that I simply cannot fit into that mold. For the longest time, I’d try to water myself down. To make myself manageable to others, as a disabled person. I’ve come to realize that whether it be jobs, friendships, day to day tasks — that I don’t fit the typical mold, and I am okay with that. Different doesn’t mean bad. Disabled doesn’t mean bad. It’s what makes me unique, and bold. These experiences — as much as I’d rather have not had to go through them — as a disabled individual, only prove my strength and resilience. Even when I cannot see that.

When I became friends with Danielle, during 2020, it was during a time that I felt incredibly hopeless. It’s a global pandemic, of a lung infection with no vaccine, and I was an individual with severe uncontrolled asthma. Most people have the knowledge that somehow, asthma is, ‘puff puff inhaler, and you’ll be fine,’ kind of nuance. That has never been my experience. With the persistency of my lungs not cooperating, I was in the hospital for a week or so at a time nearly every month at one point. I didn’t write all of this to be a sad story. The point is this: when I met Danielle through a Facebook group, she brought hope, love, and a different perspective for me to consider. I am thankful every day to have become such lovely friends. You can follow Lexi on Instagram here.

& with that, Happy Holidays!!!!

In conclusion: it’s really difficult to feel like a valued member of society, even by our own peers and loved ones, when the struggles of these disabled experiences are belittled for their own convenience. It has taken me a whole decade to feel okay. Don’t take that away from me just because you’re getting bored. Thanks in advance.

Lexi, thank-you for bringing your wisdom to this page with me. I will listen to that voice message of you saying “howdy, y’all” whenever I need a serotonin boost. xxx

Why Language Matters in Conversations about Disability

On this International Day of Disabled People, I would like to address something: language. For disabled people, language is often used as a weapon against us — a tool to keep us infantilised —, even by strangers. I had almost forgotten what this felt like, until yesterday evening, when I went to a Christmas lights display with my family. As we were leaving, I took off my mask and an old woman said: “aw, your nose is so red. You must be so cold, bless you”. She also touched my arm as she was talking, which would be uncomfortable even outside of a pandemic. At the time, I was too surprised to really form much of a sentence, so I just laughed. I mean, this feels like a perfectly innocent interaction, right? Of course, that’s exactly what makes it a problem. First of all, it was cold and I didn’t initially understand why that felt significant enough for her to mention in the first place. Secondly, I also have a skin condition, which only makes any redness more apparent. For future reference: I don’t need you to point it out. I already know. Thanks. The more that I thought about it, though, the wider issues suddenly became very clear to me. The reason that these comments are so socially acceptable is because disabled bodies are public property. Quite the statement, I know. I’m here to write a whole essay on it.

See, she wouldn’t have made this comment if I wasn’t using a wheelchair — and she certainly wouldn’t have touched me. I have spent enough time in public with my non-disabled family members to know this. Naturally, I have other examples, too. When I was in my early teenage years, I got on a bus with my mum and sister. I can’t remember exactly why, but I do know that I was in a bad mood. Once we had settled in, an old man asked my mum if I was her daughter, so she politely nodded. In response, he simply said “she looks so sad”. There was no further comment. I suppose that he didn’t feel the need to justify it, or take note of the fact that my sister had also been in a bad mood, because my very existence is presented as the embodiment of sadness. Following on from this, more than one person has stopped me in the street to say that if they lived my life, they would be in a permanent state of depression. Sometimes when I have been in the middle of lunch with friends. It’s a lot to fight against.

I made my dad take this picture of me JUST so that I could share it here, with you. You’re welcome.

It’s not just the general public, either. Professionals, too. My favourite example of this is when I went to get my wheelchair serviced, after complaining that the seat was no longer comfortable. Full disclosure: I do have a very prominent coccyx. Thanks, Dad. When a woman that I had never met before felt it to get an idea of pressure, she loudly said “oh my God” before apologising profusely. As you can imagine, she then left the room for a little while. Her colleague (someone that I have known since childhood) said “please don’t mention that when she gets back, she’s very embarrassed”. I can genuinely laugh now, hence why I feel safe writing about it, but it’s interesting how her feelings were automatically more important than mine. I had to shrink my body insecurities. Make them easier for other people to swallow.

So, what is the message here? Treat disabled people like human beings. Respect boundaries. What a wild concept. Be gentle with the language that you use and don’t be afraid to ask if you’re not sure. Today, I am celebrating the space that I take up in every room. That is not a tragedy.

Happy Birthday, Imogen. Thank-you for teaching me that it’s okay to stop hiding. xxx

PS: follow my new Instagram page for blog related content here.

Mobility Aids & Why I Love Them (Even When the World Disagrees)

If you use a wheelchair, or any other kind of mobility aid, people will look at you differently. I have been exposed to this from the earliest age, though it’s not until recently that I stopped to reflect upon why. Here’s what I was able to come up with: the disabled experience is often synonymous with ideas of tragedy or unfulfilled potential. Furthermore, non-disabled people are so caught up in the privilege of having a healthy body, it’s almost impossible for them to imagine being happy if that reality were to change. Spoiler alert: it will change, someday, even if only through old age. That much is inevitable. But still, the idea of not being able to rely upon yourself completely independently is suffocating. I know this because it’s a weight that I have carried for as long as I can remember. The painful understanding that some people will always be confused whenever I smile or laugh, particularly in public. I have heard “I’m kind of glad that you’re disabled because it has taught me to be a better person” more times than I can count. It’s easy to look at mobility aids and assume that they’re a sign of restriction. I believed that, too, for a long while. This year, however, my wheelchair has instead become a sign of hope.

The other day, I decided to be brave and leave the house with my family. This is an increasingly rare occurrence these days, in all honesty, but I really wanted to go to a little Christmas market. Remind myself what it’s like to enjoy being outside and having fun, even when the pandemic continues to make everything feel scary. With that said, when we got there, it quickly became obvious that the environment wasn’t very accessible. Unless, of course, we wanted to make a scene about getting a ramp. I just wasn’t in the mood for that conversation. Is it too much to ask that these accommodations are standard – just for once? As if that wasn’t enough, almost nobody was wearing a mask, anyway. Immediately, I felt uninvited. Looking after my health was twisted into an inconvenience for everyone around me. It must be nice, I thought, to move around the world without always having to wonder if you’ll be safe. For the record, I have said it before, I will say it again: health is not a guarantee. For anyone, at any time, but perhaps especially right now. In response to this situation, I awkwardly waited outside with my dad until we were ready to travel home again. Despite what it may sound like, this was a win for me. If it had happened at another point in my life, I can assure you that I definitely would have cried. I probably would have been quite dramatic about it, too. This time was different. Although the disappointment was crushing, I wasn’t overwhelmed by negative thoughts. Instead, I reached a state of peaceful acceptance. This is just the way things are.

This says it all so much better than I ever could. Follow the artist on Instagram here.

For the past month or so, my mental health has started to (once again) feel a little more wobbly than usual. I should have expected it with the changing of seasons, I guess. But after allowing myself to sit alongside this darkness, I realised something: just because nobody else seems to care, it doesn’t mean that I have to stop caring, too. Disabled people are allowed to expect more than the bare minimum. For whatever reason, I don’t remember much about my childhood. Something that I do remember, though, is the day that I got my first electric wheelchair. I didn’t know it at the time, but this form of mobility aid was about to become an extension of my body. With this, I have autonomy. I can move around the house freely. I don’t have to rely upon anyone else when I’m outside. I make the rules and my limitations are significantly lessened. Even in my manual chair, when it’s more difficult to have control myself, it gives me a sense of participation that would have otherwise been unavailable to me. That will always be a truly beautiful thing. In the most inaccessible spaces, I will no longer regret being visible. Disabled joy is worth fighting for.

If you’re reading this and wondering how to become okay with the presence of mobility aids in your own life: it’s a journey (maybe even a lifelong one) and you’re allowed to take a moment. But know that looking after your body will never be something to hide or feel shame for. You’re still you. Just with a little extra spice. It is radiant.

Zoe, thank-you for (once again) inspiring me to write this. I’m so proud of you. Lexi, thank-you for all of the kind texts. You are an angel. Maybe we could write something together someday. xxx

Sometimes, Being Disabled Makes Me Sad (& That’s Okay)

Recently, I started talking with a disabled friend of mine about grief. Not the traditional kind, which is perhaps what makes it even more misunderstood and difficult to talk about. Instead, this feeling attaches itself to the very essence of our hopes and dreams, which are often made somewhat impossible when you exist within a body that refuses to cooperate. Being aware of this, yet simultaneously unable to do anything about it, can be really heavy to carry sometimes.

I have been disabled for my whole life, so it might be easy to assume that I have never had to shift my own sense of perspective. I mean, thinking everything through on a practical level is surely just a sensible thing to do, right? In truth, when I was growing up, I could never imagine living further than past the next day. Even now, whenever anyone asks about my hobbies, I don’t have much of an answer. I promise that I don’t just say this in an effort to sound quirky. My days are almost always very mundane. I spent so long focused on surviving, I never really expected that I would ever dare to hope for more. I never really expected that I would experience any consistent joy. Similarly, other people have never really known what to expect from me, either. Throughout my life, I have always seemed to find the intimidating balance between able enough to recognise my strengths and too disabled to actually put them to use. Even aside from the obvious physical limitations, just attending school every day would give me enough anxiety, it was hard for anyone to believe that I would overcome it enough to ever properly function like an adult. This idea was very easy for me to internalise, as I have written about before (albeit badly). Soon enough, I started to believe that I would never be Good Enough at anything. Sure, I completed a degree and attempted a postgraduate, but all of this was simply to delay what felt inevitable: that I would ultimately end up not doing anything. At first, I thought this might actually be fun. I mean, who doesn’t dream of having endless free time? The reality, though, is very boring.

This drawing depicts the vulnerability that is so often associated with being disabled and chronically ill. How easy it can be for these diagnoses to define us. How hard it can be to recognise that we are not burdens. You can follow the artist, Moss, on Instagram here.

As I have found myself moving forward with a healed heart this year, it has also been hard to know where my boundaries are and what to do with them. I have had to fight every day to accept these limitations without allowing myself to become consumed and defined by them, which is far from easy. Having a disabled body means proving yourself over and over again. Working extra hard to prove that we deserve to take up space.

A few months ago, I was having a casual conversation with my dad when he mentioned that I would have definitely moved out of town to attend university, if I hadn’t been disabled. I have the fiery spirit that makes this feel like a statement of fact – a mere observation of the direction that my life would have taken, if my body had awarded me different opportunities. I know this, of course. I have always had a very independent mind and taken great pride in my ability to have individual opinions, away from the influence of other people. It feels like I have always been destined to take my own path, you know? So, why did hearing these words out loud leave me crying in the bathroom for half an hour? Side note: I can laugh about it now because it was the most dramatic kind of crying, but still, I was genuinely devastated. Let’s unpack it. I know that I can do these things. I know that I am capable of more – for myself. But I also know that it takes the most intricate planning and there will be barriers every step of the way. I know that some things will be too hard. That some options just simply aren’t available to me. But, most importantly: I know that I can live a beautifully fulfilled life regardless. It’s okay to wish that getting there could be easier for disabled people, though.

To Zoe, I hope that reading this gives you permission to feel sad, whenever you need to. xxx

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.

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.

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