My Disabled Body is Not a Burden, You’re Just a Dick

About two weeks ago, a disabled friend of mine sent me a text, asking if I’d ever navigated the precarious tightrope of feeling like a burden on my family. To be completely honest, the short and painful answer is: every day, without any real explanation. Interestingly, as I write this now, I’m fighting the overwhelming urge to reassure the reader that not everything about my existence is a hassle. Like, I made a list on my phone of all the things that I can do independently, as if that somehow equates to my worth. I mean, why do these details matter so much? I don’t know, but it’s probably some internalised ableism bullshit. As I work through it all, I wanted to allow myself a bit of public vulnerability, in case someone else can relate and is searching for solidarity. So, let’s buckle up.

For context, I am naturally inclined to believe that life is infinitely more fun for everyone else when I’m not invited to participate. The simple yet brutal fact is that existing in a body like this makes everything more complicated, not only for disabled people themselves, but also for those most closely associated with us. In fact, drafts of this post were almost entirely negative, as I became consumed with the idea that I’m not worth the extra effort. I was even ready to give you examples of the ways in which my presence doesn’t sparkle in social situations, validating your decision to not include me. Often, I’m not sure that I deserve it. How sad is that, really? But here’s the thing: disabled people are worthy of a seat at every table. Yes, we might occasionally have to make some noise about it, but so what? We shouldn’t have to limit ourselves just because other people can’t be bothered to make accommodations.

Over the years, I have spent time planning dream weddings with my friend, Kesia. Even during the times when we have both been Very Single. I will always lightheartedly say “I’ll be deeply upset if you choose an inaccessible venue” and she responds every single time with variations of “Danielle, I would simply refuse to get married without you”. What I’m learning, even right now as the words begin to form, is that it’s not difficult at all. I have spent a lifetime surrounded by this idea because so many people don’t care enough to figure it out. Still, that’s their loss.

With this in mind, it feels like a good time to talk about my parents. They have never been given the luxury of deciding whether or not to accommodate their plans, you know? It has been a very direct part of their reality for the past twenty-four years. It’s impossible not to wonder what paths they might have taken differently, if my body had been less reliant on them growing up. For my siblings, also, it has been an undeniably wild ride. As I have gotten older, I have spent a lot of time crying over the idea that they would always feel somewhat responsible for and limited by me, which I would prefer to avoid at all costs. There are parts of these sacrifices that can sometimes be both physically and emotionally exhausting.

A picture of Danielle standing awkwardly from her wheelchair and smiling. She is wearing a burgundy jumper, has short brown hair and wears glasses. In the background, you can see that her bed is messy. There’s also a plant and some weights on the chest of drawers behind her.
Enjoy this picture of me attempting to stand (badly) because it’s empowering to not care what I look like.

There is another side to this that nobody seems to talk about or prepare you for, though. See, having a life of my own finally feels like a genuinely tangible possibility for the future. That’s what falling in love does to people, I suppose. I was always convinced that it would never happen for me. I could only ever envisage getting older in my family home and staying there forever, without reaching any of the usual milestones. I really, truly believed that I was destined to watch from the sidelines. I couldn’t see another alternative, so it eventually became something that everyone else grew comfortable with, too. So, how can my family be expected to process these emotions when my options change so radically beyond anyone’s wildest dreams? What happens to their identities, which have always been centred around whatever I needed? I don’t have the answer to this question, but it’s clear that the transition can be a painful one.

To summarise: if you’re disabled and feel like a burden, please know that this really is a societal problem. You have been conditioned to feel that way by a world refusing to build itself around your needs. Even when you’re surrounded by wonderful people, there will still be moments where this feeling persists. Fight it. You’re worth so much more, I promise. You add value to the lives of others that is beyond your comprehension and they would be lost without you.

Owen, thank-you for always reminding me that coexistence is beautiful, no matter what it looks like. I promise to make space for you in every room. I love you so much. xxx

Reflecting on my Disabled Childhood

Today marks nine years since I had surgery on my left hip, pinning it into place. At the same time, I also had at least one other minor procedure, to loosen the tightness in my hamstrings. In truth, my memory of this time is a little hazy, though I can piece together flashes. Mostly about the pain and throwing up when I was given morphine. I have tried really hard to redirect my brain’s focus over the years, to think about something else whenever June approaches, although this has so far been impossible. The two (incredibly neat) scars on my legs are a daily reminder of how different everything would have been if I was born into another body, you know? Often, this is also visually represented to me through the lives of my non-disabled siblings, too. In a first draft of this post, the next lines were: I find myself craving an adult experience that isn’t dictated by my dependence on those around me, even now. I can imagine that it must be so wildly liberating, despite the fact that everyone else gets to make these choices without a second thought. However, whilst I might never be completely comfortable with the permanence of my situation, it’s important to recognise that different is not always synonymous with better. Things have been intense since this fateful day in 2012, sure, but I’m not going to be defined by my experiences. For the first time in probably forever, I am genuinely and consistently happy. I am slowly learning to be proud of my disability. The heaviness that used to sit on my chest has largely disappeared. I feel lighter. I have come so very far, which is why it’s necessary to look back on occasions like this one.

I wasn’t a nice person when I was fifteen — or really any time before that. Not really. It would be so easy to blame the system for its lack of support, but I do have to hold myself accountable. For a long time, even from a fairly young age, I was more mentally unwell than I’d like to admit. If the help had been offered to me, I doubt very much that I would have accepted it. It’s so hard to explain what it’s like to give up on yourself, without really trying in the first place. I couldn’t be bothered with any of it, I guess. I was convinced that my life would amount to nothing, no matter what I did. I was angry all of the time and I put my family through a lot, which I plan to write about in more detail next month. Some of the memories still make me feel physically sick, though.

I hated my time in hospital. More than that, I have some heavy trauma associated with my recovery, which isn’t something that I’ll ever go into detail about here. When this unfolded, I decided that I had to protect the softness of my heart and be unapologetically good, despite how cruel life can sometimes be. I am so proud of my adult self, truly. I’m always trying to make other people’s lives brighter, which is something that I am relatively successful at. I think. You tell me.

Still, with that said, I hate my legs and it would be a lie to pretend otherwise. I have a new physiotherapist these days and when we first met, she asked if she could take my shoes and socks off. I said, “you can if you want, but my feet are really ugly”. She replied, “I don’t think that anybody has pretty feet, Danielle”. I could have cried on the spot. Last week, she asked me to wear shorts, for practical reasons. I cried about this when I put them on. Like, I cried in the most ugly way that my mum later came home with a pair of jogging bottoms to stop me from feeling gross about leaving the house. It’s a process and we can only do our best with these things.

A screenshot of a Tweet by maya circe, which reads “i think we need to move away from the idea within body positivity/neutrality circles that bodies are worthy of love and respect bc they “work.” disabled bodies dont always “work.” disabled bodies are still worthy of love and respect, no matter if they “work” or not”
I’m leaving this reminder here for myself and anyone else who’s in need of it.

So, to recap: I survived! I am happier than I have ever been. I wish that I could tell my younger self. Not every day is perfect, but I am better able to handle the waves without drowning. That’s something worth celebrating.

Owen, you used to live inside of my dreams before we met, I’m sure. I’m not scared of the future anymore, because you’re here. I love you more with each day that passes, which is both clichéd yet true, so I don’t care. xxx

How to Handle Having a Disabled Child

Recently, someone told me that they wouldn’t publicly celebrate having a disabled child. More than that, they told me that this supposedly joyous event would be tarnished by thoughts of guilt and shame — almost as if it was some kind of personal failing. This conversation has been holding hands with the dark part of my brain ever since, in all honesty. However, it has also brought some empowerment, weirdly enough. I mean, it’s interesting, isn’t it? Despite the fact that I’m a disabled person, it still felt okay to share these feelings with me, perhaps because it’s unfathomable that I wouldn’t resent my existence in the same way that everyone else does. Surprise! I am, in fact, thriving. It’s possible to be happy even when the rest of the world expects otherwise, you know?

This feels like an important message to put across simply because it’s impossible to pretend that it’s an isolated opinion. It runs through the very fabric of our society, often without most people even acknowledging that it’s deeply problematic. Before you say it, I’m not just being dramatic. Throughout my education, there were several moments where I would have to sit and listen as my peers were asked to debate whether or not disabled lives were equal to their own. Some of the responses were, frankly, jarring and left me anxiously picking my fingernails every time.

I would tell myself repeatedly that it’d get better with age and maturity, which I allowed myself to believe until starting university. During one of the first icebreaker social events, someone immediately asked if I was adopted, without doing the same to anyone else. I laugh whenever I think about this, because even if it had been true, it’s still absolutely none of their business. The meaning behind it was clear, though: they couldn’t allow themselves to imagine that my biological parents would want to keep me around, before even knowing anything about me. At the time, I was having many different conversations with members of staff about only managing to build one strong relationship on campus. I was always told “everyone probably feels uncomfortable around you and wants to avoid saying the wrong thing, so they have just decided to avoid saying anything at all”. Not for the first time, I was made to feel like all of this stuff was my fault and not something that could be fixed by anyone else.

Together, all of this becomes an attack on the very essence of my being. Writing is the only way that I know how to fight back in these situations, so here we are, once again.

A screenshot of a Tweet by Jenn M. Jackson, which reads: "Nothing I accept about myself can be used against me to diminish me." - Audre Lorde”
I will not be diminished. The lives of disabled children can be (and are) filled with joy. That should never be something that any parent regrets.

I am eternally grateful to my parents for choosing me every day, even when it meant making sacrifices that wouldn’t otherwise have been expected of them, especially during a time where there was significantly less support available. Fun fact: Cerebral Palsy is widely considered to be a paediatric condition. I’m still waiting to be magically cured since reaching adulthood, though I haven’t had any luck yet. In all seriousness: it does mean that we have had to handle a lot by ourselves over the last couple of years, but my life is still important. My life is good. Having a disabled child is not an overwhelmingly negative experience, even if it doesn’t meet your unrealistic ideals around what a family should look like. Disabled children deserve to not spend their time consumed with feeling like an unwanted burden. Radical, I know.

Dearest Owen, your light is brighter than you will ever know. I love you.

PS: I wrote a piece on accessibility for Scope, which you can read here, if you feel like being a massive nerd about it. I am changing the world, one blog post at a time. 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

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

My Body Can’t Take Care of Itself

In all likelihood, nobody that knows me has ever thought about how the inner workings of my daily routine come together. That’s probably because I have the ability to hold (relatively) intelligent conversations, which gives people the impression that I can look after myself. I’m still trying to decide whether or not this is something to be grateful for, in all honesty. On one hand, it allows me to be treated somewhat normally (whatever that means) by those around me, but it also leads to my circumstances being forever misunderstood. I have decided, though, not to spend the rest of my life being defined by other people’s misconceptions and prejudices. So, I’m writing this post to offer some clarity. It might not be possible to hangout in-person right now, but I’m hopeful that by being transparent here, people might be a little more thankful for my presence than before.

So, let’s start at the beginning. I can get myself out of bed, although this is something that I needed assistance with until the age of twenty-one. From there, it’s not possible for me to safely prepare my own breakfast (or any meal). My hands don’t often do what I want them to, especially when I’m trying to focus on something important. When it comes to showering and personal hygiene, my mum has to help me. Yes, this is awkward and uncomfortable for everyone involved, particularly since I have been getting older. She also helps me to get dressed, too. Most of the time, this includes choosing what clothes that I’ll be wearing, given that I’m generally too anxious to make those decisions on my own. Once all of that has been navigated, let’s not forget that I’m not able to reach my desired destination without her taking me there. (Before you say it: yes, I’m aware of the fantastic things that they can do with cars nowadays, but none of it feels practical or safe for me. I have also tried to independently use public transport a handful of times before, which only ever ended up being a nightmare.)

If we have ever eaten lunch or dinner together at a restaurant, please know that I would have spent hours looking at the menu online beforehand, so that I could ensure that there was at least one option available that wouldn’t require me to cut anything up. If you have ever seen me choose to drink something directly from a bottle, it’s because I can’t pour it into a glass myself without spilling it everywhere. Very classy, I know.

It’s such a weird thing to explain. In many ways, it feels like my brain doesn’t function any differently to other people’s. Once the basic self-care has been done, my life isn’t particularly extraordinary: I have the same wants, needs and goals as everybody else. I like to have a social life, in the same way that most other people do. Still, the process of getting there does take a little more consideration. It’s hard not to feel like my job prospects are limited, when there is so much that isn’t immediately obvious from the outside. (Thanks in advance, but I really don’t need any well-meaning suggestions about this.)

To be honest, most days, I just can’t be bothered to put in the extra effort. I find myself growing tired of it. If it wasn’t for the gentle encouragement from my mum, I would probably just never shower again. I’d survive on crisps and takeaways that are easy to manage. Even before the pandemic, I would only leave the house if my friends were very enthusiastic about it. It’s a lot to sign up for, you know? To the people that are willing to try, you are true blessings. It’s more important than you will ever know. One blog post at a time. xxx