Of Mind and Heart

STOP-

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.

Several decades later my sister had an MRI, as a long shot, to try to figure out why she was sick and deteriorating with a number of symptoms that were close to being written off as anxiety. She was sent straight to the hospital for adult onset hydrocephaly. Two days later she had brain surgery to put a shunt down her neck into her stomach and drain the fluid out. (No, you cannot usually get brain surgery that fast. Yes, it was that urgent.) Recovery was long and squiggly but it happened.

I think of that boy every once in a while. The one who died. I have no doubt that treatments developed for people like him, and tested on people like him, saved my sister's life.

I've been type 1 diabetic since I was about one and a half, and was incredibly sick. If my mother hadn't also been type 1 and recognized the signs I likely would have died.

I was born in 1982. Insulin was first given to a patient in 1922, and he survived. Before that, type 1 meant death, often very slow and agonizing. Before insulin, doctors advised a super strict "keto" diet to prolong life, and it could work for awhile - up to a year, I believe. But it was a miserable existence as the body was literally eating itself as the blood turned acidic until the patient eventually died.

60 years. Only 60 years before my birth did that procedure work for the first time. That's absolutely nothing given the span of human history and I think a lot about the people who died from it throughout time.

But yes, people tried. Healers and doctors of all sorts tried all manner of things to allow these (mostly!) kids to live. The fact that it was accomplished at all is nothing short of a miracle. The fact that I've been alive 42 years is fucking insane considering my body doesn't produce a hormone necessary for survival. If you think that doesn't blow me away on a regular basis you have another think coming. It's nothing short of a miracle.

Every medical advancement is. The amount of work that goes into it and the vast amount of luck necessary to get it right even when all the research and information is sound is just astonishing.

In 1930, having diabetes type I would basically mean being hospital bound, being woken every few hours for regular injections.

In 1965, you'd be able to live at home and get by with a very strict diet and a few timed injections. You'd struggle with chronical side effects. Having children wasn't done - passing on your genes would be immoral, and it might not even be legal for you to marry.

In the year 2000, you'd have a device clipped to your belt that would measure your blood sugar and distribute insulin, you only need to change the needle a few times a day. You might even be allowed to join in P.E. class

In 2025, you stick on two patches that do the same thing. They're synchronized through your phone.

Anyway, the next night we watched a thing about some pig man who is supposed to live in Vermont. People said it had claws and a pig nose but walked upright like a man. Now, I happen to know that sideshows used to shave bears and present them as pig men. So every piece of evidence they gave of this monster sounds to me like a bear with mange.

So now the running joke in our house is that everything is bears. Aliens? Bears. Loch Ness monster? Bear. Every cryptozoological mystery is just a very crafty bear.

Disclaimer: I flunked out of chemistry and had to study English lang/lit and math in college instead of biology like I dreamed of. Now, I, at best, teach basic high school biology to speakers of cool rare languages sometimes.

Breathe in, breathe out

The main waste product of all cells on Earth is just carbon dioxide. The main way that humans get rid of cellular waste is exhaling. A major way we get the basic needs for our cells is breathing in.

The human tissues that we KNOW Murderbot (government name SecUnit) has is skin and nerves, especially human neural tissue. Now, skin gets rid of its own dead cells and excretes its own wastes (it's really hard to find a source for this, can we take this on common sense? You're shedding dead skin cells RIGHT NOW). The biggest issue it would have is that Murderbot gets injured a lot, but chances are that the technology that exists in this universe also provides a lot of the necessary medium for human skin tissue needs to repair itself.

Brain food

The problem is human neural tissue... It uses so many calories. It uses SO much energy. It actually makes perfect sense that Murderbot does things like sweat when it is overworking its brain. Maybe it can leak brain wastes out of its skin via its blood stream.

Most of the waste brains produce is still CO2, but the brain needs to make and excrete proteins all the time in addition to needing to crush crazy amounts of ATP, which requires all sorts of fun stuff and is producing all that CO2.

Bothered. Dehydrated. Anxious.

I imagine that a lot of wastes that Murderbot's human tissues produce, such as proteins and nitrogenous wastes, could probably be broken down into something it can breathe out. (Again, I did fail chemistry repeatedly, so I may genuinely be delusional about that.) However, one of the biggest issues is that Murderbot doesn't drink any water and has no way to drink water (that we know of!)... But exhaling also releases water. (Water is the other major waste product of the Krebs cycle that produces ATP.)

Maybe that water is being recaptured somehow internally? Maybe its got a little chemiosynthetic system in there making sugars and water out of its own CO2 wastes? Maybe its secretly drinking water and not telling us because that's gross and human? Maybe it is just crazy dehydrated all the time? I have a bigger issues with Murderbot's physiology than it maybe needing a gallon of glucose and amino acids squeezed into its torso every so often.

Is it possible that the adding of water and needed proteins etc happens when a SecUnit is being repaired in a cubicle? Maybe a bot that hasn’t experienced physical injury still needs to be repaired every X cycles in order to top up any inputs needed by its organic parts. And we don’t see that happen often for SecUnits and CombatUnits because they so frequently need repair from physical injury that they don’t end up going that long without repair anyway.

Over 90% of parents of visibly intersex children opt for cosmetic surgery on their infants.

The ones that don't experience medical violence then, likely experience it as a teenager.

I didn't.

I am very rare in that I did not experience medical violence.

Why? Because I learned what intersexuality was as a young age, and I actively fought against what doctors wanted to do to me. All the way down to legal research on what medical care minors can be forced into. I remember walking into that doctor's appointment with the state law written down that proved that if I did not consent they could not do surgery.