[Edited on 29.03.2022]
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.
In the original version of this post, I went on to speak about what it meant to finally see the possibility of having a life independent from my parents. About how nobody ever expected or prepared for it, yet how it shifted and challenged their identities, as two people having dedicated so much of their own lives to taking care of me. In light of my breakup, however, it has been painfully easy for everyone to work on the assumption that my existence will follow an altogether smaller path. One that I tried so hard to accept for myself as I started getting older and more aware of the nuances surrounding my personal care and (dis)abilities, which only ever made me Very Sad. Still, I also don’t have the energy to fight against that narrative right now, or maybe ever again. To be perfectly honest, the freedom that I desire feels incredibly unlikely to actually materialise anymore, which I will try and learn how to be okay with. As I watch my brother and his fiancée move into their own place, I know that my sister has her own plans and will not be hugely far behind. I will put my hopes and dreams away, instead casting my mind back to the many conversations I have had with my mum about my place in the world and its brutal realities. I will try to forget that I ever had hope of different and allow myself to get comfortable with carrying this sadness quietly. As I type this, I know that the hope is something I will forever be grateful to Pfeiffer for. I’m not sure they will ever fully understand how precious it was to me. Whatever their own future looks like, they deserve for it to be beautiful and bright. I hope that writing this down here helps to manifest it into existence somehow. For me, I will not edit this particular passage again, regardless how much I heal and time moves forward. Disabled people deserve to have space for discussions about the shitty stuff, too. It’s far from being an easy process and if you’re finding it overwhelming, you’re not alone. It’s okay to get stuck in these moments sometimes.
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. xxx