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. 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.

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.

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

Surviving Social Situations as a Disabled Person

Throughout the whole of my childhood, I was intensely bullied. To a certain extent, this has continued within parts of adulthood, too. I might have briefly mentioned that here before, but it’s something that I wanted to discuss further. See, I don’t find it especially easy to talk about, since the emotional scars still affect me today. This feels important to be truthful about, in the knowledge that my peers have probably never reflected upon their own behaviour before, nor considered that their attitudes were deeply problematic. Get ready for an education, bitches.

If I think about it for too long, I’ll probably have a panic attack. Still, there is one particular memory that I have never been able to shake, which occurred during a time when things were particularly difficult at secondary school. My mum had arranged a meeting to create an action plan with the relevant staff, in order to try and protect me from all that had been happening. However, she was simply told that it would be better if I left the mainstream education system, instead moving to somewhere with other people like me. In truth, I did consider this as an option for a while, which just makes me impossibly angry now. Of course, the implication is that I’m doing something wrong by daring to exist within a space where I am so obviously different. Almost as if it’s something to both expect and learn to live with. I mean, I’d prefer it if everyone else could just stop being horrible, but okay.

For several years, I had a wheelchair with a switch at the back, which would turn the controls to manual. On more than one occasion, some lovely people did this and literally just left me sitting in the middle of the road. That’s a whole new level of powerlessness, you know? It hurts me to know that they found it so hilarious. Within all of this, it felt like I was running out of options, so I started offering people money in exchange for their friendship. Looking back, I know that this was not real or healthy, but I was so desperate to feel safe. I thought that this would finally turn me into a cool person to hang out with, though it did nothing but ensure that my vulnerability was fully exploited. Anything to survive, I guess.

A screenshot of a Tweet by Hannah Diviney, which reads: “Being a people pleaser when you're disabled is actually not a personality trait but a survival mechanism. We unconsciously absorb that we must do everything we can not to rock the boat because that just makes it awkward & uncomfortable when we need things. It's protection.”
Hannah is so wise and her words are always so validating. It is an honour to tell people that we’re friends — in the truest sense of the word.

Thankfully, I have finally found my people. It has only taken me twenty-three whole years, whilst also embracing the idea that internet friends are real friends. Finding it hard to platonically connect with people in the area does not make me a loser — it’s actually sort of beautiful. I still want everyone to like me, of course. I mean, if they don’t like me, then I find it very easy to become convinced that I’m just a terrible person. With that said, I am learning that liking yourself is a much more liberating goal. Reminder: if my disability makes you uncomfortable, that’s really not my problem. Have fun watching me live my best life all the same.

To the few people that were consistently and unapologetically kind to me back in those days, I appreciate you. You deserve nothing but happiness. To Australian Hannah, you are going to change the world and I can’t wait to see it. To my favourite burrito, Éowyn, thank-you for bringing such an incredible kaleidoscope of colour into my life. xxx

PS: if you bullied me, I do not forgive you. But I am healing. That journey is not defined by you anymore, no offence.

A Love Letter to My Disability

It’s Valentine’s Day, which means that it’s time for me to be extra vulnerable on the internet again. I have always hated my disability and the way that it leads other people to perceive me. I have also spent an embarrassing amount of time crying over people that cancelled dates with me, after deciding that the prospect of future caring responsibilities was too much to handle. The damage that these experiences have inflicted is too heavy for words to properly convey. It has left me unable to trust in anything good. I’m constantly waiting for it to go wrong. Allowing myself to sit in the happiness for too long just feels dangerous and naive. I am notoriously bad at playing the field, so only have the emotional energy for one person at a time. If I have ever attempted to flirt with you in any way, please know that you are blessed and I am still shocked by the idea that you might have fancied me, however briefly.

Here’s the truth: I was about nine or ten when I burst into tears in the middle of an appointment to mould new splints for my legs, just because the man made some joke about all of the attention that I’d receive on Valentine’s Day. Every February, the words: “that’s never going to happen. Nobody’s ever going to love me because I’m disabled” sit at the forefront of my brain on an endless loop. I was heartbroken and am still trying to unlearn those negative internalisations.

With that said, this is a love letter because I’m learning to be grateful. Before my brother met his long-term girlfriend, there was more than one occasion where women would lose interest in him after finding out about his disabled sister. I really, really wish that I was joking. But this bullshit is a good thing, which is something that I have been trying to remind myself every day. Although impossibly painful for everyone, it is the purest of blessings. I don’t need that ableism in my life, anyway. I am determined to have more self-respect than that. I am worth more than someone that doesn’t see how beautifully radiant a life with me could be. I deserve to hold onto the connections that feel mutually good and healthy, which I’m trying to focus on now. Maybe there is something on the horizon, who knows? My heart is open to the possibility.

A few days ago, Lucy Dawson tweeted me back and called me beautiful. It was a passing comment and she has probably forgotten about it completely now, but it meant the entire world to me. For those that are unaware, she’s a pretty big deal within the disability community. She has been very influential in teaching me that disabled isn’t synonymous with unsexy. It is possible to feel attractive in a body that does not look the same as everyone else’s. I have even bought myself some new bras for the first time in two years, after my sense of self became so distorted that looking in the mirror was genuinely painful. These may sound like small steps, but I’m trying really hard.

a screenshot of a Tweet from Lucy Dawson that reads “good morning beautiful twitter ppl. I am sending you this GOOD MORNING TEXT because no-one sends me them and we could all do with one. SEND ME ON[E] BACK. Added smiles if you call me beautiful”. Danielle’s reply reads “good morning, beautiful lady !!!! you have a gorgeous soul & I hope that today is bright for you (red heart emoji)”. Lucy replies “GOOD MORNING BEAUTIFUL ONE (red heart emoji)”.
Do I have this screenshot saved on my phone so that I can read it before I get out of bed every morning? NATURALLY.

To the reader, if you don’t know much about this stuff, that’s okay. You can learn here and here. If you are disabled, single and feeling shit about yourself for it: know that I’m on the journey with you. You are whole. Falling in love with a disabled person will never be a burden, now or ever. My disability is not all that I am — I am a wonderful person and anyone would be LUCKY to date me. Repeat until believed.

Céline, you are the realest one. I appreciate the pep talks more than you know. Hannah, thank-you for reading this before I made it public because I was too nervous and insecure. I am beyond grateful that your friendship exists in my life. xoxo

Learning to Love My Disabled Identity

For so many years, I thought that the key to survival was to run away from my disability, even if only emotionally. I thought that being known as the disabled girl would define my whole sense of self, ensuring that nobody cared about anything else. However, actively pretending that it doesn’t exist only served to send me into a spiral of self-hatred. Once this had begun, it was impossible to escape from and has constantly haunted the edges of my brain for almost a decade, if not longer. However, things have finally started to change over the past couple of days. It is like a dark fog has been lifted, simply from refusing to hide anymore and believing that I am capable of better.

Firstly, I learned that this blog has been viewed over one thousand times already. My weird little blog. If we know each other well enough to be connected on social media, then you probably already know that part. Truthfully, my head is still spinning. It is so difficult to comprehend how so many people care about reading my story, however briefly. My voice has always just felt pretty invisible, you know? It has often been like screaming into the void with nobody to hear. I can’t remember a time where I didn’t feel like a disappointing disabled person because I had nothing especially remarkable to offer the world. However, hitting this milestone proves my brain wrong. It makes me feel like the possibilities are endless, although that probably won’t last long. Still, maybe my existence doesn’t have to be entirely mundane after all. For example: generally, I hate talking about my career prospects because writing has always felt like home for me, but I have always worried that I’m not good enough for it to be achievable. Now, for the first time, there is a glimmer of hope. For the first time ever, I am actually proud of myself. Can you believe it?! If you are reading this, you have collectively changed my life and I’m never going to be able to repay you.

Then, I posted on a disability support group and requested friends in a similar situation. I have never done anything like that before because the idea of being so vulnerable makes me feel physically sick, but I was so horribly alone and sad. Being young and disabled can be horribly lonely and sad — that’s the unfortunate reality. Frankly, I had expected to be completely ignored. At this point in time, it really didn’t feel like I mattered very much at all. Instead, over two-hundred people responded. Over two-hundred wonderful and warm human beings from around the world shared their stories with me, opening their hearts up to a friendship. I still haven’t been able to message all of them properly in the way that I would like, simply because there are not enough hours in the day. Even so, it has felt like I have been floating on a happy little cloud ever since. Until this moment, I had never before been embraced so tightly for my differences. Collectively, these people have saved me in ways that I’ll never fully be able to articulate. I’m still not completely convinced that I deserve each and every one of their beautifully kind gestures, but I’m determined to earn them. Their unconditional acceptance has allowed me to begin extending myself the same courtesy and it so deeply liberating. Being disabled can be a beautiful thing, too.

Also today, I received my first vaccine against COVID-19. I haven’t left the house much at all in the past year, so I was really very anxious about this whole process, but it all went smoothly. Since the pandemic first began, I have wanted to crawl outside of my own skin and be someone else. Anyone else. I deeply resented having to take so many extra steps in order to simply stay alive, so this feels like the beginning of brighter days. As a side note: my favourite mental health YouTuber has now acknowledged my existence on Twitter twice, so it feels like I have made it. Kidding, but still.

A woman (Danielle, the author of this blog) is smiling in the car and wearing a seatbelt. She is wearing glasses, a red jacket and black vest. She has messy hair but she doesn’t care.
This bitch got vaccinated: a picture taken after my appointment.

In short, I am not completely comfortable as a disabled young woman yet. I want to feel attractive and confident, so there is more work to be done. But representation is important to that process, so I’m going to continue to write until the world has changed for the better. I might even start a YouTube channel. Maybe. If I can get over my fear of the camera. But probably not. If you want to help me on this journey, please sign my gorgeous friend’s petition for a film with a disabled Disney princess here and don’t watch Sia’s new film ever. Give disabled actors the roles of disabled characters and don’t be a dick xoxo

PS: an extra special shout-out to my pals Imogen, Sophie, Céline and Jasmine. You will have a piece of my heart forever.

The Trauma of Being Disabled

Unfortunately, being disabled is often associated with some level of trauma, even if only through the way that it has been perceived by society. On a personal level, research has shown that adults with Cerebral Palsy are statistically more likely to be diagnosed with mental health problems such as depression and anxiety than those without.

When I was fourteen, one of my doctors randomly asked about my social life. I had been getting ready to leave the appointment and the question caught me completely off-guard. I couldn’t understand why that was relevant in any way, so tried to lie and tell her that I was generally pretty popular. In reality, I was decidedly unpopular and very depressed about my whole situation, though I didn’t have the language to express that back then. Just a few weeks before, I had started seeing the school counsellor, but left after the first session and never went back. Still today, I remember her looking at me enter the room and saying: “well, I can already tell why you’re here”. The whole interaction was fairly damaging — it felt like the only thing that anyone ever saw when looking at me, you know? So, when this doctor asked about my social life, my mum wasted no time in exposing the lie and asking for help. They promised to refer me to a therapist that specialised in working with disabled young people, but I never heard anything. It has been almost nine years and there was never any follow-up.

When I was about twenty, I cried in front of my GP about how bad my body image was (I had been there for an entirely different reason). Afterwards, we both just pretended that it had never happened. In that moment, the only advice that she could give me was to “focus on self-care and personal grooming”.

As I reflect upon these two examples of pivotal moments in my life, it’s difficult for me to even place responsibility or blame onto these professionals in any way. See, the key problem is that nobody truly knows how to help or understand. They can’t really be expected to, since the circumstances are complex beyond anybody’s imagination, so it’s probably not something that they are faced with on a regular basis. However, what it also means is that I’m left unable to truly understand myself, either.

Last night, I had a lengthy conversation with my good friend, Sonia. She is very wise and brilliant. She reminded me of how illness and being constantly surrounded by ignorance (however unintentional) causes your brain to be shaped differently to everyone else around you. You know, studying in a mainstream school when there are so many voices insisting that you don’t belong in that space kind of forces you to become mature very quickly, for example. It is almost like a protective barrier, which only creates a lifetime of difference, since it’s impossible for anyone else to be on exactly the same wavelength without experiencing those things. This is day one of my journey towards accepting and acknowledging that I have been through some heavy stuff, but that things do have the capacity to be better. To anyone reading this, even if we are not in touch, I want to thank you for coming along on the ride with me.

Reminder to self: I do not have to be defined by other people’s shitty treatment of me. It is possible to grow past that and move forward. I am determined to make sure that these experiences mean something.

My next post is going to be about disability and identity. I have some feelings about that myself, but it’d be cool to get some other perspectives, too! If you are disabled or chronically ill and want to have a conversation about it, send me a message. Let’s change the world. xxx

Follow me on Twitter here.

I’m Tired of This Bullshit

Can you believe that it has been almost a month since I last wrote anything here? To be honest, there have been various moments within that time where I have considered giving up the blog completely, purely because it feels like I have run out of insightful things to say. Although 2021 has only just started, I find myself exhausted by all that it has brought, you know? My brain has found everything slightly difficult to handle (which is probably an understatement), making it somewhat impossible to organise my thoughts in any kind of meaningful way. Still, if at least one person can relate to the weird sense of being suffocated by current events, then maybe allowing myself some vulnerability here is worthwhile.

So far, a recurring theme is my lifelong attempt to avoid feeling disabled, in any way that I can. From the optimism that surrounded my previous post, it’s clear that I was beginning to find different (and healthy) strategies for distraction. Oddly enough, I was slowly becoming more comfortable within the uncertainty, desperate to believe that better days would soon be on the horizon. Then, we entered into yet another period of lockdown restrictions. Each time this happens, I’m reminded that my version of normality will never be the same as everyone else’s — there’s always going to be something in the way, something that the vast majority of people will never be able to grasp. Almost overnight, the precarious balancing act that had been whirring inside my mind simply began to crumble. To be totally transparent, I don’t leave my bed unless absolutely necessary anymore. By extension, I also don’t wear anything but pyjamas, unless there’s a very specific reason for me to look like I have my life together. Otherwise, what’s the point?

Right now, the negativity seems to be seeping in from all angles. Slowly, I’m learning that sometimes it’s important to hold hands with the darkness until I feel ready to dig myself out again. I need to grant myself the space to process these emotional hurdles in a healthy way, without the pressures of forcing myself to follow any one particular timeframe. Thankfully, though, I have a Netflix subscription and am currently taking each hour as it comes. (Hit me with any recommendations you might have. We can work our way through the weirdness together. I finished watching Marcella in one day, if that helps.)

With all of that said, I am here with one very specific purpose: to draw attention to disability issues in times of crisis. If you have read this far, hopefully you care enough to stick around for this next part, too. Because every day, there is at least some focus on the news about how the current pandemic is affecting the elderly in care homes. Of course, this is a heartbreaking issue that deserves a significant amount of coverage, but let’s not forget that the same problems are also being faced by disabled people of all ages. Not only does this contribute to the narrative that our lives are not important enough to be included within mainstream conversations, but it also makes it harder to access the relevant support.

This felt like an especially timely point to make after the news that Katie Price’s son, Harvey, will soon be moving into residential college. Just like the elderly in care homes, disabled people in assisted living arrangements have also been disproportionately isolated by the pandemic. They are also not currently allowed visits from family and friends, with some of them not always able to understand why this is necessary. Yet, this is rarely recognised within any media coverage. These people’s lives are not a burden and I refuse to let them be forgotten.

Stay home, wear a mask and don’t be a dick. If you want to read more about the realities behind this story, you can do so here.

PS: although this type of living arrangement is not an immediate reality for me, it likely will be at some point in my future, however distantly. It is nothing to be ashamed of and does not make me any less of a whole human being. Also, to the reader that wanted to know my Starbucks coffee order: I’m more of a hot chocolate gal. xxx

The Shame of Being a Disabled Person

Since childhood, I have carried around a sense of shame about being disabled. Alongside that, I have also been disappointed in myself for having those feelings. It’s impossible to watch the Paralympics (with all of these disabled athletes living their best lives) and not feel like I should be doing more. It’s impossible not to feel like I should be happier and more comfortable with my apparent adversity. All of this was true, until I had a recent realisation:

The pressure to feel better is directly related to allowing others to be more comfortable — to create a space where they don’t perceive me to be living a life that is wasted. Of course, this type of attitude is one that I wish could be removed from society completely, but there is some truth to it. Sometimes, pretending otherwise can be tiring, especially when it only serves to allow people not to feel so awkward when staring at me in the street. Like, it’s apparent from my previous posts here that there are some aspects of my life that have been halted or made more difficult by disability, but happiness is not made nonexistent by such a reality. It is possible to find a weird sense of harmony between the two, which I wish could be more widely understood.

For example: in about February of this year, before the pandemic hit in earnest, I went to Starbucks with my cousin and family. We were happily gossiping about the trails and tribulations of our dating lives at the time, when a stranger approached us and handed me a leaflet. He said that he couldn’t imagine how unbearable my circumstances must be, but that he was willing to help me find “a life without wheels”, through the power of prayer. I’m a loser and hate confrontation, so I politely thanked him and headed into the nearest bathroom to cry. At the time, I had been really struggling with my body image and generally didn’t feel great about myself, so the whole thing was very bad timing. For me, perhaps the saddest part of this interaction was that I’d been having a genuinely nice day, until that moment. I had been laughing in the seconds before he spoke to me, yet he was entirely focused on highlighting the glaringly obvious negativities.

When drafting this post, I had initially wrote: to be honest, I wish that he had been right. I mean, imagine if fixing everything really was that simple. But let’s unpack that idea, in hopes of demonstrating how damaging these well-meaning gestures can be. Firstly, there is no cure for Cerebral Palsy, so taking away my wheelchair would truly be no life at all, even when I do struggle to accept my dependence on it. Secondly, isn’t it heartbreaking that one conversation can leave me feeling so broken? Especially when it probably wasn’t at all significant to the other party.

Moving forward, I will strive to live without shame. Your misplaced guilt and pity is not my problem, so I can promise that I’ll be fine without your prayers. This body is mine, for better or worse. Sometimes, that can be a beautiful thing. Please allow me to try and outweigh the bad with the good throughout 2021. Already, this blog has received more overwhelming love and support than I ever could have hoped for. It has brought a certain strength to my friendships, both old and new. Maybe — just maybe — I’ll never hide in a bathroom again. Let that be my New Year’s Resolution, okay? One blog post at a time. xxx

PS: as promised, here’s a shoutout to my brother, Jack. He wants me to remind everyone that he is, in fact, Carer of the Year. Not really, but still.

If you have a question that you have always felt weird about asking directly, hit me up on CuriousCat! Yay for anonymity. I’m all about that education and will do a post on it in January, if there’s anything. https://curiouscat.qa/Disabled_Danielle97

Why Do I Hate Myself So Much?

In the week that lockdown restrictions have been eased, I felt compelled to make sure that some of the bigger issues are not forgotten. It’s entirely possible that nobody reading this will care at all, but perhaps taking this action can prove something to myself instead: a reminder that my existence can — and does — have value, even within a society that would readily dispose of vulnerable lives in exchange for a trip to the pub with their friends. See, the title of this post asks a big question, I know. In fact, it might make some people feel uncomfortable, in the same way that such raw honesty is wildly outside of my comfort zone. However, it’s also something that I have had no choice but to confront this year, after a lifetime of preferring to pretend that these thoughts were not an issue. Due to a wide variety of medical conditions, I have been shielding since March, even during the periods where advice around this has been more lenient. Almost overnight, all of the coping mechanisms that I had put into place to compensate for how different my life felt to other people’s simply disappeared. Before, I could just about manage the dull ache that I feel in my heart over a lack of healthy romantic opportunities, if I was able to meet friends for coffee. I could just about manage my sadness over never quite feeling confident enough to accept meaningful date invitations, over fears that I would inevitably become a burden, if I could buy my mum dinner instead. I could just about manage my horribly messed up body image, if I could actively plan events to look forward to throughout the year and perform well academically. You get the idea.

So, you can imagine how difficult it was when everything fell apart simultaneously, leaving me with nothing but time to think and fall down the rabbit hole. First, I had to watch as society at large complained about missing out on the various aspects of life that have always been inaccessible to me. For example: I have never been into a nightclub, simply because I am terrified about what might happen in the event of an emergency. Besides, being invisible in a crowd full of drunk people is not my idea of fun. Speaking from experience, it’s very easy for people to forget that I exist when they feel like the responsibility of looking after me will prevent them from having a good time. Then, as life started to regain a semblance of normalcy that I couldn’t participate in, my friendships also became more distant. The negative voice from inside of my head was getting increasingly loud, so it felt as if I no longer had anything to talk about with these people, or support to offer that would have been worthwhile.

In amongst all of this, after an acrimonious couple of months, I have officially taken an extended break from my studies. At the final hurdle, the university offered me almost no support. After making a formal complaint, it has since emerged that this is largely because they don’t know how to properly help their disabled students, particularly during times of crisis. This whole experience was awful, to be honest. I’m still working through the damage that it incurred to my sense of self. Still trying to reassure myself that my existence isn’t pointless without academic validation. But this, combined with everyone’s approach to the pandemic, did allow me to realise one thing: I have been misunderstood and bullied by people throughout my entire life, really only because they have never been given the tools to accept diversity without question. It’s impossible for them to associate disabled lives with anything positive, if they have never been shown any examples. So, that’s what this blog aims to do, alongside helping any other young disabled people that this might reach. You are not alone. Maybe, I’ll even learn to heal myself along the way, too. Yes, there are parts of myself that I don’t have a good relationship with. But I’m learning that it’s because I don’t have any reason to fight against those ideas right now, on a societal level. In the meantime, I will be my own voice for change.

So, check in with your chronically ill and disabled friends right now. Stay safe. Also, please don’t be afraid to ask questions. Conversation is never a bad thing, when it comes from a place of wanting to do better. Besides, I am exhausted by feeling like such an important part of my life and identity is somehow taboo. One blog post at a time. xxx