At least once a year, I will have an existential crisis about what will happen to me when I get older. I’m sure that everyone understands these feelings to a certain extent, but there’s something undeniably violent and all-consuming about it when you’re disabled. I mean, my mum has been pretty much solely responsible for the most intimate aspects of my care since I was born, so what happens when that can no longer be the case? These days, my plans for the future are perhaps lonelier and more isolated than ever, simply because I’d hoped that so much could be different. Because even being my most independent self is only possible with cooperation from other people, you know? My logical brain is fully aware that this is completely insignificant when the caregiver comes from a place of love, but there’s still no escaping the internalised bullshit. The idea that I don’t deserve it. The idea that it will inevitably become Too Much. It feels like A Lot to ask of another person, which adds yet another squishy layer of vulnerability to my existence. (Side note: thanks for that, Dr Phil.)
In order to counteract this, there is always a Plan B. This is something that is true to the disabled experience as a whole, I think. When nothing ever goes right or stays consistent, it becomes important to understand how to survive if it all disappears. According to Google, Cerebral Palsy is considered to be a “non-progressive but often changing condition”, which essentially means that there are no clear answers, not least because it affects every individual differently. As things stand (no pun intended), I can lift my own body weight and transfer independently from my electric wheelchair, if I’m going to bed or having a shower. Will I still be able to do these things in five years? Stay tuned to find out, friends.
When my thoughts were in their messiest and most anxious form, I shared them with my beautiful friend, Hannah. I knew with absolute certainty that she would say something validating, which I’d like to include here: “people like us feel like we can only plan ahead a few pages at a time because the BIG FUTURE feels like it shouldn’t belong to us. We’ve never seen examples of it before”.
Even just staring at her words on the screen has made my chest feel a little tighter, simply because they’re so accurate. With that said, the whole point of choosing to be vulnerable on the internet (again) is to emphasise that all hope is not lost. Although there are so many factors outside of our control, we can still exist loudly. We have every right to romanticise our lives in whatever way feels accessible. Be okay with small goals and dare to dream about big ones, too. We deserve it, we deserve it, we deserve it. Repeat until believed. I’m right there on the wild ride with you. If it helps: we were conditioned to believe that our lives are forever destined to be smaller than everyone else’s, you know? Therefore, any step towards disabled joy (however small) is an act of rebellion. How sexy and cool is that?!?! If nothing else, I am determined to create examples for the future generation of disabled children and people.
PS: are you still reading? I recently started a volunteer role at Scope, which you’ll already know, if you follow me on Instagram. Anyway, part of this will involve writing some blog posts for their community(!!!) and you can find my first one here, which covers my experiences of being lonely throughout the pandemic. All of the fun stuff.