Finding Disability Pride in a Global Pandemic

Until recently, I have always actively avoided attaching myself to any notion of disability pride. If I’m being completely transparent, I hoped that this defiance might somehow allow me to wake up one morning with the ability to walk — or even stand. There is no logic to this thought pattern whatsoever, I know, but I do still have dreams about it sometimes. It’s hard to describe what it feels like to wake up from these places with the briefest hope that they have become a reality. If you were wondering, the first thing that I’d do in this instance would be to find my parents and shout “surprise!” in the most casual tone that I could muster. Afterwards, I would immediately go for a shower. Independently. What a wild concept. Also, I have always thought that jumping looks like so much fun, even if only on the spot. Is it fun? The simplest of things, really. Yes, I have planned it. Just in case. But when that doesn’t happen, what am I left with? I have spent half my life genuinely believing that it was impossible for me to happily exist in a disabled body. Let me tell you, friends, the ugliness of this pandemic has led to the most beautifully wild and liberating revelation: I was wrong. There will always be a lot of noise to the contrary, but disabled lives are full. Disabled lives are good. Disabled lives are worthwhile. Disabled voices are important, even when (and perhaps because) policy consistently works to suggest otherwise. So, let’s talk about that, please.

Here we are again. In the United Kingdom, most restrictions are officially set to be lifted on July 19th, despite warnings that this could cause our case numbers to reach one hundred thousand per day. But most clinically vulnerable people have been fully vaccinated now, so who cares, right? The amount of times that I have heard this argument within my own social circle is both disappointing and not at all surprising. The fact remains that recent research raises doubts over vaccine effectiveness for immunocompromised people. In all honesty, I have been trying really hard to simply avoid fully processing this information and stay positive about the potential outcomes, which may sound irresponsible, but it’s also deeply important to my emotional stability. Because what type of message is this supposed to send, really? From where I’m sitting, the answer is a painfully obvious one: nobody cares. The lives of disabled people are inherently less valuable than opening nightclubs, for example. Once again, it has been decided by the people in positions of power that we are disposable. Well, excuse me if I’m done being quiet about this bullshit.

A screenshot of a Tweet by Karl Knights, which reads: “Not gonna lie, I am very much not fine. Having the government, and your peers, just outright say that they don't care if disabled people die is as enraging as it is upsetting.”
I am leaving this here because I have A Lot of feelings. The world is especially rough for disabled people right now and it’s okay to just sit in the sadness for a while, if you need to.

See, having a disabled and/or chronically ill body isn’t easy, especially in moments such as these. The subtle ways in which society is ready to tear us down for its own benefit can become twisted into our own brains and leave irreparable damage. But guess what? The idea of getting on other people’s nerves by existing loudly and happily motivates me more than anything else. This year, that is enough to fill me with pride, which I haven’t experienced before. I mean, let’s be real. It requires a lot of Bad Bitch Energy not to give up on yourself when your needs are very clearly seen as inconveniencing the general population. Similarly, it also requires a lot of Bad Bitch Energy to take up space in the rooms where difference is not welcomed. News flash: if you’re reading this, you haven’t given up on yourself, either. What a powerful moment.

To the non-disabled readers, thank-you for caring enough to listen. Thank-you for reaching out and offering solidarity. You give me hope that the future can be better.

Zoe, thank-you for always believing in me and filling my messages with words of wisdom. You are brilliant and bright, even on hard days. Owen, thank-you for teaching me the power behind being unapologetically myself. I love you. xxx

Accepting Help as a Disabled Person

For me, having to accept some level of help from other people with my intimate care is perhaps the worst part of this human experience, especially because I will often feel like it’s some burdensome obligation. I am very deeply aware that this isn’t how adulthood is supposed to look like, you know? With that said, I have been trying so hard recently to become more independent, very stubbornly deciding that I will simply refuse to let my disability prevent me from fully living life. For the most part, I had been succeeding, too. I mean, just a few weeks ago, I was able to cut up one of my dinners without assistance from anyone else. Not very well or anything, but it still felt like reaching a big milestone. Every day was getting better, until I started to believe that the possibilities were endless, with the right amount of work.

Over the past week or so, however, my body has been giving up on me a lot. This isn’t something that I’ll be further discussing publicly right now, simply because it wouldn’t be good for my mental stability, though it has been heartbreaking beyond words. Learning to manage these new expectations has been far from easy — and my brain has been consumed by how cruel it feels. Disabled and chronically ill people are never allowed to get too comfortable with progress in their health. It is impossible to tell how long it will last, so any glimmer of hope can often be devastating. For the record: this is something that we are allowed to feel sad about. That doesn’t give everyone else the right to ignore the good parts of our lives, as if they don’t exist at all.

A screenshot of a Tweet by Ru (she/they), which reads: “the sheer frustration and disappointment at your body when you want to do something but physically can’t because of pain/fatigue is something that can never be adequately explained to a non-disabled person”
It is very easy to feel trapped. I’m not going to pretend otherwise. I’m not always going to have a Good Day.

If it matters at all, I do intend to fight back. I have worked too hard at loving myself to let this ruin my belief that the future can still be bright. But in many ways, that’s not really the point. This fight can be (and is) an exhausting one. It’s not something that I was ready to work with, particularly when things were on such an upwards trajectory. I have every right to take a moment, you know? It can be important to sit with the emotional turmoil on occasion. I will not shy away from talking about the Bad Days in order to make my existence more tolerable for everyone else. Looking back, I’m proud that I can do this now, safely in the knowledge that I’m not defined by these moments. I have never had that before, so I’m absolutely not asking for sympathy. Please, though: I am so happy that the pandemic is largely getting easier and I have even braved visiting a garden centre now(!!!), but let’s not forget that this can be difficult. The world has never been entirely safe for disabled people, but that is especially true in this moment. Let’s take small steps towards better, without forgetting that this can also be associated with a lot of anxiety. Let’s be gentle with each other and not completely abandon virtual interaction. I understand that it is getting tiresome for some, but it’s also a lifeline for others, which I refuse to invalidate. Health is not a guarantee, people.

Owen, you make everything better, always. Thank-you for listening to me cry about it. You are all that is good and I love you more than anything. To my family, thank-you for being on my team at every appointment and offering hugs whenever they’re needed. More than usual lately, I know, but I do appreciate it.

Truly, there needs to be a radical overhaul of support services for disabled young people, which seem to be impossible to find. It would be nice to occasionally feel heard — and it would be nice to find a physiotherapist that isn’t entirely out of their depth when they have me as a patient. I deserve better, but I’m also not the only one.

PS: I look like shit right now, but MAYBE I’ll post a celebratory selfie when things are brighter. My body image issues are not welcome here. 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.

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

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