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

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.

“talk to your partner about what makes sex enjoyable and accessible for you. disabled people deserve and can have great sex.” in black text on a pink background.
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.

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.

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.

A drawing titled “new years resolutions” by @crazyheadcomics on Instagram. It’s a piece of paper on a yellow background, which reads as follows:
“be nice to myself
stop putting unrealistic expectations on myself
aim for progress instead of perfection
do life at my pace
recognize the small cozy moments of everyday life
ask for help when I need it
get through the year the best I can, and cheer myself on at every step”
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.

A screenshot of a Tweet by Philippa Ayana, which reads: “Why don’t people understand, it’s not that we don’t want to go out, it’s that we can’t. People with physical or mental conditions want to do things but our bodies literally stop us. 

It’s not a f*cking choice.”
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.

A screenshot of a Tweet by Imani Barbarin, which reads: “Disabled people are my people of the year. Literally, fuck everyone else. 

After the shit y’all put us through.”
& 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

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.

The picture is divided in half by a black line. On the left, a sad looking white kawaii style character with green space buns, a pink jumper, and blue trousers sits in a wheelchair. They are shackled to the chair by chains. Above, in a white bubble are blue words saying “the perception”. The background is a dirty yellow with chain link fence effect. On the right side of the black line is the same character in their wheelchair. This time, there are no chains. Instead they have beautiful purple and yellow wings, and they are smiling. The writing above the character says “the reality” on this side. The background is orange with a slightly lighter overlay of columns of repeating love hearts.
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.

On a white background, there is: a cartoon drawing of Moss, a nonbinary person with ginger hair and a blonde fringe, falling through a hole in the sky on a sunny day. They are naked and about to land on a blue hospital bed, where there is a blood bag ready for infusion. In the right corner, there is an artist credit symbol for “little jaybird 21”, in reference to their Etsy store.
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

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

Having Ambitions and Managing Expectations as a Disabled Person

My life is not defined by any of the boundaries that society places upon me. My existence is too full and beautifully loud to be squished into any boxes. At least, that’s what I have been trying to tell myself every day. I am slowly learning, however, that the reality is not always so idyllic.

My lovely friend, Elaine, recently sent me a screenshot from a YouGov survey and brought my attention to one question in particular. It asked whether or not the general population thought that disabled people were “too reliant” on the welfare system to support them. When I last wrote about this in detail, I didn’t articulate myself very well, so let me be clear. In these circumstances, any money that people receive is truly the very bare minimum, yet even this is being reduced further in October. I have been trying not to think about it too much, if I’m being completely honest. It’s stressful and makes me feel kind of gross about myself. I mean, this is happening despite warnings from various charities that it’s likely to push millions of vulnerable people into debt. If that doesn’t tell you everything you need to know about how little our lives — and the things that bring us joy — matter, then I don’t know what will. Furthermore, in response to criticism, Boris Johnson has said that people should see their incomes rise by making an effort independently. In case it wasn’t obvious, here’s why this is so ableist: many disabled people can’t work, for a myriad of different health reasons. At best, it’s not always possible for them to manage working full-time. Secondly, many jobs and workplace environments are physically inaccessible. For example: I have been trying really hard to find a job, truly. My body doesn’t allow me to do much that is deemed worthy of being paid for, but I saw an opening at a local library. Working from home would be ideal, but I was willing to give this a try, until I saw that you were required to be capable of manual labour. I was so disheartened — and this is only one example. Not only that, but many positions require some level of experience, which has never been available to me. Lastly, disabled people are consistently paid less than their non-disabled counterparts. It is so unbelievably draining to constantly take an unflinching look at your body and feel like nothing will ever be good enough.

The other day, I went on a walk with my family to the park, as a small celebration of my brother’s engagement. When we were there, someone stared at me, which is fairly standard. These moments affirm that the (dis)proportions of my body are jarring to those around me. That my obvious happiness is shocking, confusing and worthy of a second glance. Interestingly, it also reminded me of a conversation that I had with my physiotherapist during our last session. We were in the middle of doing even more work than before, when I mentioned very casually that I hate doing squats because “I feel like I look silly”. She told me that many of her patients have expressed similar insecurities, particularly around going to the gym. She said “I have massive respect for anyone that knows other people are going to have an opinion about the way that they are able to look after themselves and choose to do it anyway, even when it’s difficult”. The urge to shrink myself and hide away is overwhelming sometimes. There is both comfort and sadness in knowing that I’m not alone in this.

A black and white photo of Danielle using a hoist to stand in physiotherapy. She is wearing a mask but her eyes look happy because she is smiling at the camera. She is holding on for dear life.
I thought about using a hoist for transfers when I was in secondary school, but my brother and his friend walked in unexpectedly when I was trying them out. I was literally dangling in the air. I remember leaving the room in tears because I didn’t want them — or anyone — to see me at my most disabled. The shame was indescribable. Now, I’m willingly posting this picture on the internet. That’s a win for personal growth.

As I was writing this, trying to think about how to wrap things up and make sense of how I’m supposed to move forward from here, my sister came into the room to help me have a shower. I couldn’t figure out how to log out of the web browser, so just quit the page instead. “You’re going to lose all of your work”, she said. Her choice of words hit me with a clarity that had been lost before. Work. This, here, is work. It might not make me any money, but it’s my something. The value that disabled people have cannot be measured by their contribution to traditional definitions of employment. This doesn’t mean that we deserve to live a life that is smaller and less open to adventure. xxx

The Truth about Representations of Disability and Chronic Illness

Recently, the BBC aired a documentary, which promised to explore how damaging it can be when chronically ill people are accused of faking their conditions online. After hearing from the disability community that this was actually dangerously misrepresented, I decided to take a deep breath and watch it myself. In doing this, I wanted to make sure that I had access to all of the relevant information and could articulate my thoughts properly, you know? So, here we are. Let’s sit down and talk about it, please. Education is perhaps most important when we are given yet another reason to stop fighting.

The piece itself is only relatively short, so its narrative became twisted pretty early on. Rather than highlighting the lived experience of this toxicity, it worked towards adding validity to these personal attacks and focused on offering an understanding as to how these doubts might begin to materialise. Alongside this, there was also a conversation about how those with genuine chronic illnesses will exaggerate their symptoms online for attention. Frankly, I still don’t know whether to laugh or cry.

To a certain extent, I am blessed by the fact that I have a permanently visible disability, so my diagnoses are generally taken seriously. Like, I fit the description, right? Being disabled only seems to count when you look like me. Still, just the other day, a new consultant asked me if I ever experience pain in my legs simply from existing. Before my brain had time to properly process the question, I found myself telling her that I was fine and didn’t have too many complex health worries. Of course, that’s not true and I can feel the familiar hum of pain running through my legs as I type this. On Monday, I had a particularly tough session at physiotherapy. So tough, in fact, that I could have very easily cried about it. Yet, whenever she checked in with how I was feeling, I insisted that I was handling the whole thing well. I hate giving the world yet another reason to believe that I am an inconvenience, so would rather just quietly ride the wave instead. I’m working on getting better, but these experiences are important to discuss openly because they are only compounded by issues around chronic illness.

A screenshot of a Tweet by Poppy Field, which reads: “I hate how it’s radical to believe a disabled or chronically ill person, but I believe you. 

Please don’t doubt yourself or internalise recent media ❤️”
It’s not hard to be a decent human being about the things that you don’t understand, okay?

Because Cerebral Palsy is not enough, I also have Ulcerative Colitis. This in itself is not visible, yet it has a disabling impact on my life. When I say that I barely left my bathroom for two years, it’s not an exaggeration. One time, I was fed up of missing so many classes and decided to make an appearance on campus, despite not being anywhere near stable enough for that. It took less than an hour for me to realise that I should be at home, only for my lecturer to run out of the room after me and start asking increasingly invasive questions. This whole experience was deeply uncomfortable, especially since we really didn’t know each other very well. Throughout this time, I was constantly asked to provide letters and test results before any extension on my deadlines would be approved. I had to cancel dates, which always ended with being sent messages saying “you can just tell me if you’re not interested”, even when I tried to offer an explanation. Thankfully, I’m currently on some hardcore medication that has put me in remission. With that said, it does make my hair fall out, which has been an interesting thing to manage. So, what has been the point of this overshare? Nobody would put themselves through this on purpose, truly. It is hard enough. Even though things are significantly better now, I am tired all of the time and it’s a fight every single day not to believe that my life is being wasted. To believe that I can (and will) do more. We should be allowed to search for a sense of community without being doubted. Furthermore, on the very rare occasion that someone isn’t being entirely truthful about their health or the circumstances around it, let’s remember: Münchausen Syndrome is a mental illness and it deserves to be treated with care and compassion. The rest is not a competition.

In conclusion: do better. Also, if you have read this far, please take a moment to educate yourself on Micaela’s story and sign this petition, so that she can stay in New Zealand with her family. I genuinely looked into moving there when the pandemic first began and wasn’t allowed to even begin the process because I’m disabled. Really. This shit happens. Like I said, do better. xxx