August Macaro-Taylor

like the girl i was good friends with in school for years who took notes for me in our shared lesson when i stopped coming to school, who saw me in the pub a few years later with a cane and asked “oh god what’s wrong with you!” and looked uncomfortable when i responded “still the same thing as before”

seeing parents of people i went to school with who know me and know how i was as a child and they cheerfully ask “so you still got that thing going on?” (it’s always thing. never illness or sickness or condition) and then get surprised when i say that yes, the lifelong chronic illness i have is lifelong and chronic!

the thing is, i really don’t think a lot of people grasp what a chronic illness is!!! it’s not something i just grow out of, it’s not something that’s healed by a couple years passing. but people don’t like to think about that. because they remember how i was before, when i was healthier, and look and listen to how i am now and realise that i really am never going to be that person again. and they think of themselves and their loved ones and get nervous and itchy about it because they know me getting sick wasn’t caused by something preventable, it just happened.

and i know they’re probably looking for a surface level “yeah i’m okay.” or for me to just brush it off but i don’t and never will because i need people to get comfortable with the idea that they are never above getting sick. and i don’t mean that in a fearmongering way i don’t say that to upset people i say that because understanding brings compassion and god knows disabled people deserve more compassion !

there’s a world out there that abled people will never even begin to understand unless they sit with that uncomfortable feeling properly! there’s a world out there that they may very well become part of, a world that’s not built for disabled people to thrive, or even survive. it’s not made for us and they are always just one step away and i need people to get compassionate and maybe they need to be selfish about it too! maybe the change they make in looking outwards at the state of accessibility and the lives of disabled people will come from discomfort and a feeling of dread that they could one day be beaten down by the very same system that affects us today! if fear of your own future and the potential future of your loved ones is what gets you to open your eyes and start attempting to change and help those disabled people around you, then maybe you need to get selfish!

i won’t sanitise the life i lead now, i won’t downplay the fact that i am saddled with one hell of a shitty body cause i need people uncomfortable, because only when they’re forced to face something will it bring change !!!