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.
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