I hope you don’t mind a reply to this!!
So to give context to myself because we’ve never spoken directly before this, hello! My name is Heron, and in 2023 I fractured my spine (L1 to be specific) and it didn’t heal well. I also have; fibromyalgia, multiple traumatic brain injuries, hypermobility (a 6 out of 9 on the scale), severe chronic pain, POTS, AuDHD, C-PTSD, a whole bunch of other mental crap, I wear glasses, and I’m hard of hearing. I have to use mobility aids and go to physical therapy twice a week. I’m also just over 300lbs and 5’9”. I also live in extreme poverty that keeps me from accessing a lot of whatever bullshit disability resources exist in the hellhole that is America lol
I used to do musical theatre, I used to hike, I used to play volleyball. I don’t anymore, for a multitude of reasons, but primarily because of how disabled my body has become. It’s ok to be scared, of your own disability, I know it scares me. I live on a third floor walk up, I was more or less apartment bound for an entire year after I broke my back because I could barely handle the stairs. That level of isolation nearly drove me insane I won’t lie, like it was some of the hardest shit I’ve ever done in my life.
I dreamed of being a Broadway performer, even while I was in art school, that has always been my passion. Realistically now, it’s out of reach, and it’s taken me a long time to come to terms with that. And yeah, that loss is horror for me, I can no longer do what I dreamed of since I was performing my own operas and musicals in my living room 22 years ago as a toddler. It fucking sucks ass.
But I think the key thing here is; the horror is *mine*. Not someone else’s to make media about, if there is gonna be horror around a disability, I think it should be made only by the people with that disability. Not because I’m like “only disabled people should tell disabled stories” (though in horror I do think this rings a little true) but because it’s not as effective to me if it’s just some abled projecting their fear of becoming disabled onto my already lived experience.
The horror of being stuck in a room with a broken back is not some dramatic moment, it’s a slow building, crushing horror that most ableds wouldn’t have the knowledge or patience to properly drag out the way it needs to (and no, being stuck inside during the pandemic doesn’t count). That horror’s true effect can only be felt through the pen of someone’s whose lived it, in my opinion.
I’m not going to tell you not to be afraid of your disabilities and the impact they could have on you, that would be silly. But the opposite of fear is knowledge, so always continue to listen and learn from your own body, and from other disabled bodies you keep community with!
Also final point, and not from a place of judgement; yes, the fear of getting fat and being fat is rooted in fatphobia. And I don’t blame you! Media and society at large does a LOT to push fatness as a moral and social failing, as well as the pinnacle of “poor health”. But in reality; there are so many fat dancers, musicians, hikers, performers, swimmers, athletes, etc. you just don’t see them because that would defeat this narrative that has been pushed about how unhealthy all fat people are. If you’re interested in knowing more about this stuff, looking into fat liberation is a great place to start! Fatphobia is so rooted in misogyny and racism and classism and ableism that unlearning it is helpful when becoming just a better all around human, in my opinion.
I hope you never stop making music. I hope you find some ease from your pain, and that the world becomes kinder. You deserve to shine and be heard just as much as anyone else! I apologize this is so long, but I hope I got my point across!!!!