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

Challenging Accessibility in a Global Pandemic

The world has always felt like a very scary place for me to exist within. For the longest time, it was dangerously easy to internalise this as being my fault. I was convinced that all of my problems would be solved, if only I could learn to be slightly less socially anxious, you know? However, I am starting to realise that these feelings have been perpetuated by a desire to shrink myself and ensure that my needs didn’t inconvenience other people, which I refuse to do anymore. So, I’m going to write about a few experiences where inaccessibility hugely damaged my quality of life, in ways that the general population has probably never even had to think about before. Maybe you’ll feel called out for not questioning this stuff on a daily basis, but I want you to know that it’s okay. I’m not going to be invisible for another moment longer. Let’s all agree to do better, moving forward.

I will never forget the time that an old friend had a birthday party during our teenage years where all of the guests (also my friends) were told: “don’t tell Danielle. I’m not inviting her because my house isn’t accessible and I don’t want her to feel left out”. Spoiler alert: I heard the gossip pretty quickly. For future reference, it’s always nice to have a conversation and know that someone is thinking of me, rather than to feel very intentionally excluded. I don’t expect people to centre their entire plans around my existence, of course, though it would be cool to feel like my presence matters enough to warrant some consideration. Because that, I suppose, is the entire point: disabled people’s lives do not matter enough within society to earn a second thought from those that the issues do not directly affect. We are not invited to take up space in pubs and clubs, for example, because we don’t belong where everyone else goes to have fun. Well, frankly, I have had enough.

As another example: when I started college and finally found somewhere to properly fit in, I was delighted when a group of new friends asked me to hang out with them one evening. Although the gesture itself might sound small, let’s remember that it hadn’t happened many times before, so this immediately felt like my life had reached a turning point for the better. Additionally, these people are lovely and considerate, so even made a phone call to our chosen venue to check that everything was wheelchair-friendly. After being given assurances that there wouldn’t be any problems, I was safe and ready to start enjoying myself. Unfortunately, though, the story doesn’t end there. When we arrived, it became apparent that there were stairs by the entrance and no ramp available. Needless to say, I went home and tried to pretend that it was no big deal.

A few years later, I wanted to take a bus from university campus to the centre of town. Public transport generally stresses me out, but my friend was involved with a local art exhibition and I wanted to be supportive. Besides, there’s nothing wrong with trying to be a bit more independent, right? On this particular day, however, the ramp was broken. Eventually, this led to some well-meaning strangers attempting to push me onboard instead. I have nothing to say about this, except: don’t touch mobility aids without consent, people. In response to all of this, I simply left the scene very quickly and cried to my mum about it later. Every single time that I have tried to be like everyone else, something goes wrong, leaving me unnecessarily vulnerable.

A screenshot of a Tweet by Lucy Dawson, which reads: “was just sat thinking gosh I hope the world doesn’t forget about us disabled & chronically ill ppl when the pandemic ends but then recalled that much of the world has yet to actually remember us in the first place so anyway. AS U WERE, LD. X”
Just don’t forget that disabled people exist. It doesn’t feel like too much to ask.

Interestingly, although the world’s current circumstances are overwhelmingly horrific, this pandemic has forced the world to become more accessible. Classes have been moved online with relative ease (thanks to the lecturer that told me this type of thing would be too complicated and unfair on everyone else when I was very unwell), working from home is now more socially acceptable and there has been an increase in job opportunities for those with limited mobility or fluctuating health conditions. Not only that, but social events are almost entirely virtual, which takes away many of the physical accessibility concerns for disabled people. In short, now that these options have been made available, I refuse to watch them be taken away entirely just because they make everyone else feel as if life is not being lived to the fullest. There has to be some kind of balance, which we should all be determined to find.

A screenshot of a Tweet by Charis Hill, which reads: “Hey folks who want everything to go back to normal:  Disabled people really need you to finally get it:  #BackToNormalIsAbleist”
The short version of this post is essentially summarised here. Enjoy.

To Kesia, thanks for being the inspiration behind this piece. You are a wonderful friend and I will forever enjoy our rants about social injustice. Dearest Owen, I can’t wait to go on adventures with you. Thank-you for reminding me that the fight will always be worth it. xxx