I haven't used this blog, or tbh most of my blogs, in a while. Particularly since getting my current job because when you're disabled and teaching, you regularly have no spoons.
But I saw this tiktok: https://vt.tiktok.com/ZSj6DAMkH/
And what it brought up for me was hella interesting in terms of disability advocacy and relying on (more) abled bodied friends.
I have one friend I trust with my wheelchair when I'm in it.
It's not the friend I live with. In fact I am incredibly stubborn and will put myself in pain and danger at times with a 'No, I've got it' to avoid him pushing my wheelchair.
And it turns out; Sunshine Coasts Aquarium is not independently wheelchair accessible and those ramps were way to steep to be safely navigated without help. (Despite the website saying it's accessible. It was not. SeaWorld is more independently accessible tbh)
And I only had one friend I was willing to let help out of the three who were there I could technically ask. (I realised afterwards I probably could have asked my cousin more, but I didn't at the time)
That friend had essentially paired off with my cousin and was not with me most of the trip.
I was also in my Karma wheelchair not my normal one bc my normal chair has tire problems.
*photo below bc it won't let me type under it*
It's a heavy wheelchair that is not easy to push from within it and fucked up my hands by the end of the day.
I didn't have walking spoons thanks to pain in the morning, but I was physically fucked by the end of the day in this.
And part of that is; I struggle to ask for help but also, when the only friend I can fully trust to ask for it is the friend who worked in disability services and ran wheelchairs around the airport for years as a job.... because that's the only person who won't cause me more pain or almost knock me out of my chair bc they don't understand cut curbs.... (My day started with almost falling out of my chair bc someone else didn't understand cut curbs). It's not a shock that I don't use my aids when I should (like at work) bc it's just too fucking hard.
I need my wheelchair at work, but I can't get it there. I literally can't get to work in it. Buses magically 'Don't see me', ubers and taxi's cancel, unless my coworker is picking me up (and I don't want to ask that of her if I don't have to), I'm not able to take my wheelchair to work so I take my cane and rollator.
And to an extent; that is a privilege that comes with being ambulatory.
But it also means I burn out so fucking hard because I'm so often in pain and I don't admit as often as I should the amount walking fucking hurts.
I stopped telling people that it still feels like lightening and glass when I walk bc most people don't care if I'm doing it all the time and they see it as dramatic… meanwhile I'm here like 'I feel it through my entire spine sometimes but I just ignore it now until it's time to take meds for the other kinds of pains and pray I get some extra relief.'
When you're disabled, sometimes 'I live with higher chronic pain' becomes part of the job description just so you have a job.
Meanwhile I'm working on teaching teens to 'Not do that bc it'll fuck up your body and brain and we will advocate for you to not have to do that if you need'. (I work with neurodivergent youth in employment services in my day job now, hence my lack of online presence for the last while)
Knowing fully well I'm a hypocrite who's burning out bc of chronic pain 99% of the time.
I don't have a lot of disability supports anymore.
I traded pain reduction for being further from toxic family and a hope of having a job history that isn't entirely self employment in sex work or sex worker adjacent categories that I don't put on my resume anyway.
But if I created anything educating truely on the hidden sides of my disability?
I would probably die inside a little acknowledging how much work it is to maintain living like this… while also having to actually confront how much help I don't have despite having lost friendships over how much work it feels like.
And a lot of it for people is the mental toll.
Because internalised ableism is a bitch to everyone. And I don't like how the way I'm looked at changes when I'm honest about how bad things are; because depending how the way I'm looked at changes tells me wether or not I'm about to lose someone.
I'm fully aware that despite knowing I don't need to at all, I still avoid telling my partner things about my disability and it's daily impacts on me because more than knowing they'd worry… and despite knowing no fucks would actually be given and the way they look at me wouldn't change bc they're one of the only people I fully trust wouldn't be weirded out by the full impact of FND on my life bc they've read some of my tumblr things about it before, he knows more than most tbh… I am terrified of that anxious feeling that is entirely trauma of 'Will I become too much after this one'.
I no longer ask things of my abled bodied friends.
I can actually pinpoint the exact interactions I stopped asking as much and I think my actual final straw was after my previous relationship ended and my ex (who is still one of my best friends) started dating someone who is also chronically ill but differently… and hearing the comments made by his family and friends about the 'Relief he was dating someone he didn't have to take care of'.
And he tried to shield me from a lot of the comments, but shit still makes its way back to me and fucked me up a little.
It's weird knowing the two reactions from abled bodied friends would be a mix of 'why didn't you tell me?' and 'I don't understand what you want, you seen fine.' if I ever opened up about how bad it is.
I actually miss living with my cousin bc it was the only place I didn't have to lie about the pain I was in and would get the help in the ways I needed it most without fighting for it.
And tbh; I don't really know if I have a point other than it's fucking hard and the people in my life who aren't disabled have actually made it terrifying to tell even my closest also chronically ill friends how bad it actually is.
Because it got easier to pretend I'm not struggling in pain than admit that I am and ask for help and feel unwanted/rejected.
And abled bodied discomfort is infuriating when it makes you feel so alone and impacts your relationships because they're uncomfortable.
