Recently, I started talking with a disabled friend of mine about grief. Not the traditional kind, which is perhaps what makes it even more misunderstood and difficult to talk about. Instead, this feeling attaches itself to the very essence of our hopes and dreams, which are often made somewhat impossible when you exist within a body that refuses to cooperate. Being aware of this, yet simultaneously unable to do anything about it, can be really heavy to carry sometimes.
I have been disabled for my whole life, so it might be easy to assume that I have never had to shift my own sense of perspective. I mean, thinking everything through on a practical level is surely just a sensible thing to do, right? In truth, when I was growing up, I could never imagine living further than past the next day. Even now, whenever anyone asks about my hobbies, I don’t have much of an answer. I promise that I don’t just say this in an effort to sound quirky. My days are almost always very mundane. I spent so long focused on surviving, I never really expected that I would ever dare to hope for more. I never really expected that I would experience any consistent joy. Similarly, other people have never really known what to expect from me, either. Throughout my life, I have always seemed to find the intimidating balance between able enough to recognise my strengths and too disabled to actually put them to use. Even aside from the obvious physical limitations, just attending school every day would give me enough anxiety, it was hard for anyone to believe that I would overcome it enough to ever properly function like an adult. This idea was very easy for me to internalise, as I have written about before (albeit badly). Soon enough, I started to believe that I would never be Good Enough at anything. Sure, I completed a degree and attempted a postgraduate, but all of this was simply to delay what felt inevitable: that I would ultimately end up not doing anything. At first, I thought this might actually be fun. I mean, who doesn’t dream of having endless free time? The reality, though, is very boring.
As I have found myself moving forward with a healed heart this year, it has also been hard to know where my boundaries are and what to do with them. I have had to fight every day to accept these limitations without allowing myself to become consumed and defined by them, which is far from easy. Having a disabled body means proving yourself over and over again. Working extra hard to prove that we deserve to take up space.
A few months ago, I was having a casual conversation with my dad when he mentioned that I would have definitely moved out of town to attend university, if I hadn’t been disabled. I have the fiery spirit that makes this feel like a statement of fact – a mere observation of the direction that my life would have taken, if my body had awarded me different opportunities. I know this, of course. I have always had a very independent mind and taken great pride in my ability to have individual opinions, away from the influence of other people. It feels like I have always been destined to take my own path, you know? So, why did hearing these words out loud leave me crying in the bathroom for half an hour? Side note: I can laugh about it now because it was the most dramatic kind of crying, but still, I was genuinely devastated. Let’s unpack it. I know that I can do these things. I know that I am capable of more – for myself. But I also know that it takes the most intricate planning and there will be barriers every step of the way. I know that some things will be too hard. That some options just simply aren’t available to me. But, most importantly: I know that I can live a beautifully fulfilled life regardless. It’s okay to wish that getting there could be easier for disabled people, though.
Éowyn, thank-you for loving me. It is an honour to intertwine my hopes and dreams with yours. To Zoe, I hope that reading this gives you permission to feel sad, whenever you need to. xxx