M.Maurysiek

The only things that work without rest are machines; literally everything that lives requires rest.

For @thepromptfoundry’s Jazzy July

219 word Hazbin Hotel ficlet.

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It wasn’t that Alastor had never had lessons—he’d spent about a year’s worth of Monday afternoons under the tutelage of the preacher’s wife, learning to read music and play piano—but the circumstances of his life had been such that he had mostly been left to figure things out on his own, by trial and error as much as by ear. 

He was very good at it, and had, over his lifetime and afterwards, built up quite a commendable skillset. Though he had read quite a lot, the nature of being mostly self-taught was that there were many things he knew how to do, techniques he knew how to use, that most likely had names—statistically speaking, quite probably names in French—but that he did not know names for, save perhaps for those monikers he had assigned them himself. 

This could make discussing music with other musicians somewhat fraught. 

This was a contributing factor to his preferring to work alone when it came to music, or with someone like Angel, equally lacking in formal training. 

No access info for any of the venues

Box office is inaccessible

Google “[festival name] accessibility”; get info on their “accessible pricing” (pay £1 less if you want to). No mention of free tickets for essential carers

Do a lot of disability detective work; most venues don’t have wheelchair access

One claims to be accessible, look inside: “we’re an accessible venue. There are three steps to get in, but we can help you with those”.

“Everybody welcome*”

We have people who can carry you up the stairs

Even worse than "3 steps but we can help you!" what do you mean you're going to carry someone up the 1 to 2 FLIGHTS of stairs? What?

So I carefully explained how I have a manual handling plan that sets out how I can safely be moved and that I cannot just be lifted by a random stranger who isn’t familiar with my disability. And that even if they got me up the stairs, my wheelchair is twice as heavy and there is no way they’d get it up the stairs.

I asked them, knowing that, what was their plan once I was upstairs, just lay me in a corner somewhere and hope I didn’t get stepped on*? Cause that doesn’t sound like a good party

It didn’t change anything. Events continued to be in the same venue, and they stopped trying to include me at all.

so. you want to bring a heavy, fragile powerchair upstairs? a powerchair that, if you drop it, could mean... failing out of school, losing a job (and unemployment for months-years), dying of pressure sores? it's not low stakes.

Because of that price tag, in the UK most people who rely on NHS funding for a CRT powerchair don’t have access to funding for a backup chair. I’d imagine this is similar in other places. Without my chair I’m completely housebound with no independent mobility.

That means if you drop and break my chair I can’t get to my workplace, can’t access healthcare, do my shopping, sit in the garden, visit my elderly relatives or housebound friends, or anything at all that means leaving the flat.

It can take so long to get new parts for a powerchair and even longer to get assessed for a whole new chair. Where I live if you can’t get to the wheelchair clinic (say because someone threw your only means of mobility down a flight of stairs) you’re waiting even longer for the assessment to get prescribed a new chair and the wait for any new part to be fitted is also longer because there are only so many engineers, OTs and physios and making house calls takes much longer per visit.

so many autistic people (likely most) are diagnosed in early childhood. I was diagnosed at the age of three. I could not tell you what I struggled with and where. I was diagnosed based on external predictors rather than internal experiences (though that diagnosis did consider how those external predictors related to my internal experiences!)

the criteria should be expanded to include the experiences of older autistic people with the ability to self reflect but you can't eliminate the criteria that are externally visible.

great many cases gonna be noticed in early developmental period (childhood)!!

great many cases also going affect someone communication ability tell you what they struggle with & where & why!

n by that mean. nonverbal ppl especially those without functional communication. people w language disorders & complex communication needs in general. some people w comorbid intellectual and or cognitive disabilities. n like. in general people w inherent symptoms of autism that lead them be diagnosed w level 3 autism / equivalent.

I want to add that the criteria is worded in a very vague way and the adult caregivers sometimes don't understand what it's supposed to mean — so there should be a version of questionnaire that asks in more specific ways, too.

1. see this so many times, a lower support needs autistic / adhd person who expected live normal among Ableds talk about struggle w day to day n be so exhausted every day n so many (so many!!!!) similar lower support needs autistic / adhd ppl in notes n comments etc talk abt be similar & feel so broken n failure n alone etc bc no one talk abt it. honestly so heartbreaking n frustrating for me knowing it common LrSN experience

it so common!! so many people struggle with it! but despite be so common, ppl not really talk about it abled ppl don’t n many LrSN ppl also don’t bc embarrassed / don’t know to / been shut down n shamed before / don’t realize not everyone like this. no one know how common of experience it be. despite be so common no one rly have good easily accessible solution to it

2.

n bc am higher support needs person n this be higher support needs blog inevitably going talk about how this impact higher support needs people bc it absolutely does

bc ppl not talk abt this experience n so not realize how common this be among LrSN ppl, AND ppl talk even less abt more severely disabled people & ppl w mid n high support needs, the General Nondisabled World (which many LrSN ppl made to exist in) kick us to our own separate lil contained hidden place to point no one realize we exist or should be put in your world view. so some LrSN (autistic/adhd) ppl inevitably think they higher support needs than they actually be

ppl see struggle w these things n auto label it / themselves who struggle / other ppl as mid or often even high support needs,

bc compare to General Nondisabled World it feel very big n the distress feel very big n the struggle feel very big n it is (!), it be higher than what General Nondisabled World demand them to be. but bc that General Nondisabled World on purpose hide the rest of us who cannot even pretend to blend into n fake it until we make it there no comparison to the whole disability spectrum.

so us mid & high support needs ppl get pushed out even further, where words for us no longer recognizable for us, we forgotten even further.

try seek community using our own terms n words n experiences n descriptions n quick shorthands bc don’t want to / too invasive to / too long to / shouldn’t have to list out every single thing we need support on n be essentially told hi now you too much too high too difficult for even high support needs

low support need get push to mid support needs, mid support needs to adapt get push to high support needs, n high support needs people left no where to go once again

it not about compare to nondisabled ppl bc to them we all too much. it about overall disabled people

n it not just abt you yourself. it about wider it about all

have heard many low support needs ppl come to me n say they been listening to me & other ppl w high support needs & advocating with us centering us in their advocacy n believe we deserve support n through that. they recognize & get more okay n comfy with admit & accommodate their own support needs n deserve support too

support the most marginalized n entire community will feel good effect it trickle up

so

tldr like

low support needs not mean no support needs, unfortunately low support needs not mean no struggle it can often mean immense struggle just like mid n high support needs ppl. struggle with clean house laundry cooking shopping n forget to eat until suddenly it end of day n can’t keep job n constant in burn out all the time n severe depression anxiety ocd etc all be really really common lower support needs autistic / adhd experience in current world unfortunately n deserve more recognition n support n be talk abt more than it be getting right now but it cant just be solely from high support needs people.

For @thepromptfoundry's Jazzy July

631 word Hazbin Hotel ficlet, set in the world of of my Hellspawn kidfic series.

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It was a dreary, drizzly day that had darkened early and turned stormy as night drew near.  Now fat raindrops were throwing themselves in rolling ratatat waves against the big picture window of the Hotel library, making the view of the city wobble and ripple under the intermittent flashes of blue-white lightning that sent rumbles of thunder rattling the window glass.

There was a fire flickering under the heavy mantle, the green tinge to the flames giving away that Alastor had lit it by magic to warm the room.  Warming things in a different way was the cathedral radio atop the mantle, its ornate face aglow with the golden incandescence of vacuum tubes—or at least of a lightbulb playing their ghost while transistors did the real work within.  Turned down low, the rich aural fabric of slow smooth jazz wove itself through the room, shot through with the faint velvet hum of electromagnetic power.

For @thepromptfoundry's Jazzy July

473 word Hazbin Hotel ficlet, set in the world of of my Hellspawn kidfic series.

~

The twins had set themselves side by side on the same piano bench, wincing in unison every time either of them hit the wrong note, giggling as they played their halting still-clumsy way through a song written for four hands they were attempting with five—one of Lucia’s being on dedicated sheet music duty.

“Well, that didn’t completely suck!” Alastor said brightly, materializing from shadow to lean on the piano.  “And you were almost at tempo.  Quite the improvement over last night.”

“Thanks!” both girls chirped, Sasha giving a flutter of her wings.

“Wanna play with us?” Lucia offered, looking up at Alastor with big shiny eyes ad a hopeful little smile.