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.

Éowyn, thank-you for listening to me talk about all of this and being so gentle with helping me work through it, even though it’s taken a long time. To say that I love you never feels like enough. I can’t wait to see you. 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. Éowyn, I feel so blessed to be ending this year with you (and yes, I also have a Big Crush on you. We can get married whenever you want.) 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. Éowyn, I can’t wait to confuse everyone by being happy in public with you. You are my favourite. 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. xxx

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. Éowyn, thank-you for never looking at me any differently. I love you.

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.

Éowyn, thank-you for loving me. It is an honour to intertwine my hopes and dreams with yours. 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.

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

Learning to Be Okay with Medical Trauma

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

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

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

Just a disabled child and her brother wearing funky clothes in the 90s for your enjoyment.

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

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

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

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.

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.

Éowyn, you make it feel like moving mountains to include me will never be too much hassle. I don’t have enough words in my vocabulary to express how deeply important you are. I love you so much. 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.

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.

Éowyn, your stories deserve to be heard by the entire world. I’m so proud of you and I love you more than anything. xxx

Let’s Get Political: Inaccessible Workplaces and Why the Welfare System Needs to Do Better

The Government has recently put forward a Green Paper, which highlights the efforts that are now going to be made, aimed at helping disabled people to fully integrate within all areas of society. They are so proud of this, calling it “the most ambitious plan in a generation”, particularly focusing on bridging the employment gap, ensuring that the disabled community are theoretically able to find and keep work more easily. Not only that, but they also placed emphasis on tightening the laws around building accessible housing, too. So, here’s the thing: all of this sounds exciting, right? Some might even argue that it’s progressive. With that said, reaching this point has been so painfully difficult, both locally and globally. For example: just a few days ago, it was announced that the US Paralympic team will be paid the same amount as their Olympic counterparts for the first time ever. Yet, we are expected to be grateful for the bare minimum — the smallest signs of progress —, after consistently being told throughout the pandemic that our voices should remain unheard? Not today, thanks.

When I was in the early years of secondary school, we were once learning to sew as part of a textiles class. I find stuff like this embarrassingly difficult because my fine motor skills leave a lot to be desired, so I had been heavily relying upon help from my Support Worker. I mean, you would think that’s literally what they’re there for, huh? Still, the teacher waited for everyone to leave as the day ended before launching into a speech about how I would never amount to anything if I insisted upon moving forward with a bad attitude and expected other people to do everything for me. She then went on to imply that I was simply too lazy to try, as if she was suddenly the expert in all things Cerebral Palsy, which was an interesting take. I left the room without saying much and she called my mum to apologise before I even arrived home, but the damage had already been done. It’s funny, how quickly you can begin to doubt yourself once this message has been sent your way. Maybe I really wasn’t doing enough. Maybe everyone would get bored of me. Maybe my presence just makes people roll their eyes.

I have many examples like this one, but there’s a lot that this leads into, so I’ll just give one more: when I was later in a wood technology class, I was determined that I could do this independently. I wanted to be seen actively participating, almost as if to prove that I deserved to be there. I remember this distinctly because I was initially allowed to do it independently, after I had been given some gentle direction. I was so genuinely proud of myself, until it was decided that I was being too slow, so the teacher just wordlessly came to finish it for me. Worst of all, he made it took easy. Again, the message was clear: even my best efforts would always hold other people back.

With this, I have always found it hard to settle on a career — or even the idea of one. Do I have enough to offer? Is it actually possible to earn a decent wage on the amount of hours that I’d physically be able to put myself through? How flexible are employers likely to be, really? What would I even be good at, anyway? So many questions. Of course, it’s easy for people to assume that the welfare system is a dreamy alternative, although it’s the opposite. The money that you receive is alarmingly minimal and it’s almost impossible to build up any meaningful savings. I was once told by an assessor that they expect me to only be able to afford a holiday if my parents paid for me, as an example. Of course, that’s without even talking about how deeply invasive and distressing the process is in itself. I was asked to talk at length about all the things my disability prevents me from doing — the very things that I’m constantly pushing to the furthest edges of my mind —, to the point where it made my mum cry. There is no dignity in this.

In summary: we live in a society that equates working with having value, yet are already beginning to scale back on the most accessible remote job opportunities, in light of restrictions being eased. Then, we use this to dehumanise disabled people altogether. Disabled people deserve to live the fullest of lives, no matter what, but employers also need to recognise that we are worth more. It’s really not that hard, okay? It would be nice to be given a chance.

Éowyn, you will forever be my favourite person in the whole world. I still don’t know what I did to deserve you, for the record. xxx