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romanianwilkinson · 9 months

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Hi! I'm very interested in attempting to write a disabled character (not for this blog, I assure, for an book I'm writing) in which the story doesn't fetishize/objectify her prosthetic limb. I'm in many writing circles and have been for a long while, but I've never seen this issue brought to light which I realise is a very important one. I have much to change in my thought process, and thank you for bringing this issue to attention.

I'm curious, and I apologise if this has been asked before, but what sort of design could you see for a functional prosthetic that doesn't go for a plainly aesthetic appearance, or is soully to please others? I do note that you said prosthetics are generally... not that helpful. So is there a way that it could be? Or do you think it would always generally be better to not use a prosthetic, as its mostly for aesthetic purposes, as you said?

I apologise if this ask is too outright or anything, and I don't mean to intrude. Thank you for your time and have a beautiful day!

okay, i want to answer this as in depth as possible, because whenever i talk about having a prosthesis, someone will always tag some variation of "#writing reference" and i do wonder what message they're taking away, and i want to get as much of my experience out as possible to maybe help shape how this is all portrayed in the future. and yeah… this is gonna be one of those rambly smg posts that the expand feature was invented for, so i'll start with the very abridged TL;DR:

if you're writing a character with an upper limb prosthesis; don't. arm amputees are unicorn level rare even compared to leg amputees, and i've never interacted with or even heard of an upper limb amputee that regularly uses a prosthesis, let alone relies on one. fiction has lied to you for the sake of cool aesthetics, don't repeat the cycle. more in depth writing advice including nuance and "but i waaaant to" will follow.

that said, grab your donning parachute and let's get started...

context for everyone involved: i am an upper limb amputee that rants a lot about how prostheses suck, i lost my right hand roughly five years ago at roughly the age of 30 after a very rough decline in health… it was pretty rough. this question is being asked in the context of a previous rant post of mine, and i checked that the ask is about an upper limb prosthesis in particular.

the situation regarding the usefulness of lower limb prostheses is totally different; i am definitely no expert, but by all accounts, prosthetic legs are incredibly useful for many people. getting a good leg can be absolutely life changing and more or less necessary for day to day life for some; mostly because infrastructure and society is just so fucking hostile to wheelchair users. being able to walk - at the cost of pressure sores and rashes and increased residual limb pain - is a preferable option to many people than being unable to fit through a doorway or in a bathroom stall or find out that the key to unlock the only elevator is in the admin office up three flights of stairs (true story).

but upper limb prostheses… see, the thing is, hands are incredibly complex organs that rely on a lot of immediate haptic feedback to work at all. hand dexterity is all about control, you need fine granular movements of the digits yes, but you also need the subtle sensations of pressure and proprioception in order to adjust your movements on the fly. i speak from experience, in the years leading up to the full loss of my hand, i was slowly losing function of it, usually swinging between numbness that made it clumsy at best, or screaming overstimulation from moving it at all resulting in unpredictable spasms… and let me tell you, a half working hand is infuriating to try and deal with. you can never know if you have a good grip on something or if it's slipping because of the wrong amount of pressure, and there's only so many smashed bottles of pickles on the floor before you give up using it all together… so amputation wasn't a great loss there, i had time to adapt.

a prosthetic hand of any kind has all of those issues and more. they're heavy and bulky, the cosmetic faux fingers or gripping claw have crude movement at best, and there's zero feedback (put a pin in this). 100% of the time you're using a prosthetic hand you have to keep your eyes on the grip and visually guesstimate whether or not the thing you're carrying is held tight enough but not too tight, that is if your "heavy duty" prosthesis can even support the weight without the servos disengaging or the wrist attachment socket just busting loose. i dropped a whippersnipper on my foot last week when my socket couldn't take the weight and i think that was the final straw in me desperately trying to prove to myself that there is a single task my prosthesis actually helps with.

this is usually where fully two handed people start talking about bleeding edge DARPA tech, and how we just need to invest more,research more, develop more. better tech, more tech, neural integration, more more more. okay i promise the writing advice is coming! for starters on tech, my experience is already with a mid-to-high end ottobock terminal device: i've got a myoelectric nerve-signal operated proportional control heavy duty greifer; about the only upgrade left for me to get would be a rotating wrist joint if i could coflex. it's not military, it's not "rockclimber that owns a prosthetic company", but it's quality tech. it still fucking sucks. secondly, that high level military tech exists primary for PR purposes so they can say they treat their discarded casualties well, "we can rebuild him, we have the technology" style. every war vet i've read about or heard from that's been gifted that high level tech also abandons it for the same reasons; it's imprecise, there's no feedback (or the haptic interface has to be fully recalibrated every time they put it on), but mostly they're more capable without one.

okay, the transhumanist ableds say (i should know, i used to be one), what if we did more ~research and development~ and got that neural feedback working? then we could have fireproof superhumanly strong robot arms to fix up everyone! here's where i take out that pin we put up before and i tell you that a class of prosthetic arms/hands already exists that has perfect proportional control, fine motor control, and physics perfect pressure feedback piped directly into the patients' existing sensory systems! they're called body-powered prostheses, and they were invented in like the 1600s. you strap a whole bunch of stuff to your arm and shoulders shoulders, and control the operation of the terminal device and elbow through cable tension by flexing your shoulders. they do take a considerable amount of training to operate - though hell i spent 18 months training to use my myo - but based on everything i've read, body-powered prostheses are the best option if you're an upper limb amputee and absolutely need a second hand for some reason.

but they don't look cool and futuristic, and according to my prosthetist, most people give up on using them too. we all give up on our prostheses, no matter the type. my rehab OT was impressed i lasted the 18 months of my training. towards the end, they even asked if the clinic director could drop in to one of my sessions to see my progress; he expressed genuine amazement at me casually using my bulky robot claw to use a brush and dustpan, and made an offhanded (hah) comment about what someone can achieve "if they stick it out to the end", implying it was somewhat of a rarity for me to have done so. several years on, and yesterday i wedged the dustpan between my ankles to sweep up into it, awkward but exponentially less effort than putting my dusty robot arm on. which, by the way, is a whole thing. look up some videos, they're all awful to don. i don't actually know the official technical name of what my clinic calls a "parachute" but it's a bitch to use! have you ever tried to pull back with your arm whilst also pushing it forwards at the same time, and simultaneously lean in to and away from an external force pulling on you? that's how you get a myo socket on.

bare with me, i promise writing advice is coming, and i promise it's more than the tl;dr. but. remember when i said a half working hand is infuriating to deal with? any prosthesis, from fancy myo tech to pirate-era body powered, will only ever be half as good as a working hand, and being juuuust within capability to do something but not quite able to is maddening! but you know what works way better than a half working hand? no hand at all. using whatever residual/vestigial limb you have - whatever "stump" you have, i hate that word - is pretty much always better than trying to use a prosthesis. i can use the inside of my elbow to grip and carry things, i can use the nub of my arm to apply pressure to hold things, open doors, use a computer mouse, turn on taps and lights, if i put a glove over it i can use it to prep for cooking. i have full proprioception and pressure feedback with skin contact, i don't think i've ever dropped and broken anything from my elbow, unlike countless things slipped from my greifer - which, by the way, absolutely will start clenching as tight as it can if i get even slightly too sweaty around the electrodes, which has both broken things i'm holding and also injured me, because surprise surprise but servo operated robot claws have pinch points on them right near the "emergency disengage" lever for some reason!

but i am exponentially more capable without it on than with it. no, i'm not fully independent, i rely on housemates and loved ones to help me out with some tasks that simply just need two handed dexterity, but none of those tasks are things a prosthesis makes me able to do anyway. i used to imagine my prosthesis would be like a bra; a bit awkward and uncomfortable, but i'd wear it throughout the day because it's helpful and take it off in the evening to decompress. in reality it's actually exactly like a bra: an absolute bitch to put on one handed, unbearably uncomfortable because it never sits right, ugly af unless you're a millionaire, and absolutely useless except for the fact that i get gawked at and judged by strangers if i leave the house without it on.

and if you really want to discover how far "no hand is better than a half working hand" goes, brace yourself, and look up the patient's stories (not medical system stories) of people that have had hand transplants. the first man to receive one hated it, he was promised a return to normal function, and what he got was a nightmare worse than being one handed; he wanted it removed again but the doctors refused because it would undermine their grand achievement of the first hand transplant. the doctors and society wanted him to be fixed, they wanted him to be normal, they wanted him to be abled. they failed. they made him less able to do things, denied his autonomy, and left him with someone else's hand slowly rotting on him, prioritising the idea of "scientific progress" and "two hands good" over the physical health, mental health, and ability to function of this man.

he's not alone; every story from the patients' perspective about hand transplants that i've read goes this way, including a woman who was born quad limb different and was promised hands would improve her life, pressured into a double hand transplant, only to find herself after the surgery essentially experiencing disability for the first time ever, because she had lived her whole life getting by just fine with her 'underdeveloped' limbs, but half working hands are worse than useless. you can try to find these stories yourself, but i'm not going looking for sources on any of these cases, because if you look back through enough of my posts you'll get a glimpse of the horrors and abuses that i too was put through by doctors who prioritised trying to "fix" me at any cost, rather than providing me the best quality of life, and in turn traumatised me and left me more broken than any loss of limb on its own could. dear goddess, i promise the writing advice is coming.

so. why do upper limb prostheses exist at all? if they're so terrible and useless, what is their function? i want to borrow something someone else left in the tags of a previous rant here, from someone who i believe works in prosthetics and/or rehab, cleaned up and anonymised at their request:

"upper limb functions are wildly more complex than: 1) bear weight static, and 2) bear weight moving. but every single upper limb amputee i know has a fancy expensive prosthetic just gathering dust in the closet because there is literally nothing it can do like a few years of adjustment and if needed non-dominant hand retraining can't do. the existence of forquarter prosthetics to begin with is just kind of silly and useless and entirely to make OTHER people feel comfortable, especially considering they universally are UNcomfortable for the amputee. i hate the notion that as soon as you get the amputation the prosthetic is The Thing That Will Fix You And Make You Feel Normal again because it universally isn't! but every forequarter person i know had like this ideal of Being Fixed By Magic Prosthetic that they were then obviously wildly disappointed by and had to do yet another grieving process with, versus if the dominant narrative were just one of: yeah. it'll take time, there is no magic fix."

and i think that really nails down what the actual purpose of upper limb prostheses is: they're not for the user, they're for the sake of other people. and not just their comfort when looking at our bodies, although based on the pressure for both amputees and people born limb different to get functionless cosmetic plastic hands, there is a lot of that. but it's not just that.

i fully believe that the reason prosthetic hands exists is to comfort the fears of the two handed. "don't worry", they say, "we can fix you again. you don't have to fear becoming Disabled, you don't have to worry about adapting or your life changing. we can make you Normal™ again."

you would not believe the number of people that have approached me to shower me with pity, to tell me how horrific my life is, how they can't imagine it. people have told me, apropos of nothing, that they'd kill themselves if they lost a hand. indirectly, that my life isn't worth living. unless, of course, i happen to be wearing my cool as fuck looking robot prosthesis! then they tell me how wonderful it is, how lucky i am, how glad they are that we have the technology to fix me. that's what a prosthetic hand says, what all the happy fishing photos on limbs4life posters at the rehab clinic say: don't worry, we can fix you. that's what the bleeding edge DARPA flexi-whatever fully articulated neuro-feedback hands say: don't worry if you get IED'd while hunting civilians for us to drone bomb, if you get hurt, we will fix you, we will fix the fuck out of you, we will motherfucking adam jensen you into a cool as fuck cyborg that your son will idolise; come on boys, don't you wanna enlist just for the chance at being as cool as this? join the bomb squad for a ticket to the upgrade lottery.

and so we arrive at fiction. as much as his dialogue options protest, adam jensen loves his robot arms, they punch through walls, turn into fucking swords! they make him the most special man in the world. what would he do without them? learn to cope? grieve? practice acceptance? take up poetry? just, be disabled? there's no power fantasy for ableds in that.

in fact, can you think of a single fictional character that's an upper limb amputee that's, well, just an amputee? they all have robot arms. not realistic prostheses, not medical devices; robot arms. sleek or bulky, top of the line or broken down self built, steampunk or nanomachines or magitech automail; they're never without them. never just an amputee. never born limb different either! there's always that element of tragedy to overcome, always suffering and misery porn, always focus on the pain and the helplessness without the absolutely vital robot arm that makes them Normal and Whole. the closest amputee example i can think of is furiosa from mad max, who iirc fucking punches max in the face with her residual limb like a motherfucking badass! i can barely lean on mine wrong and she punches a guy! but she still apparently needs a dieselpunk robot hand to drive a truck, something you can do one handed so easily most drivers don't even notice they're doing it! please don't, by the way

and so many disabled fans love to point to robot armed characters as disability representation; the winter soldier, luke skywalker, edward elric, misty knight, that genderswapped furry girl from ratchet and clank, jet cowboybebop, finn the human, and yes, adam jensen…. these are all characters that someone disabled i know has told me they love because they "represent disabled bodies"…. and i know nobody wants to hear this, because i've been screamed at for saying it before, but… they do not. they are not disabled, functionally or within fiction. they are either perfectly able bodied Normal people with chrome paint on an arm, or tortured misery porn we are supposed to pity and feel lucky we're not them. sometimes both!

also you ever notice how it's basically always arms? lower limb amputations are orders of magnitude more common than upper, my prosthetist said i was probably only the 4th or 5th upper limb she'd worked with in her career, with literally hundreds of lower limb fits. but fiction doesn't seem to reflect that, huh? or any other part of the reality of disability. it's always cool as fuck robot arms, never cool as fuck wheelchairs or crutches or dialysis machines or colostomy bags. a fair few "i was blind but now i can see with Robot Eyes and also infrared and xray" around, which again, plays into that "we can fix you and make you cooler" propaganda.

by the way, up above when i was describing body powered arms, if you wondered to yourself why i went with a myoelectric one instead when i clearly believe body powered is better… yeah. i am not immune to propaganda! i too wanted to be cool as fuck. i spent years with deteriorating function in my hand for reasons that are still unknown, was misdiagnosed and medically neglected to the point that removing my hand seemed to be the only option left to offer some relief, and even that was a clusterfuck that left me worse than ever… of course i wanted to believe in the power and prestige of a cool robot arm that fiction promised me.

but fiction promises fantastical lies. and so.

we get to the writing advice portion of the novella that is this post. you asked for advice on how to write a disabled character with an upper limb prosthesis. you've read the tl;dr, you've read everything above i assume, you know i don't want you to do it. the obvious twist is that it's been writing advice all along, me trying to share my perspective on what it's like being an amp with a robot arm and how shitty it is, implying how almost any fully realised and realistic character that's missing an upper limb would give up on a prosthesis at all. you can already tell that every value judgement in me says "don't give her a prosthesis, no matter how functional or cool you make it. don't try to make the tech better to justify it, just let her be one armed, one handed. just let her be disabled, but not helpless. let her show off her elbow or underarm carry strength. let her love interest appreciate how soft and squishy her residual limb is in a moment of tenderness. let her natural disabled body be respected and valued."

but that's a personal value judgement from me, and you are the author of your own work. i know it's trite to say, but you are! even the act of deferring to someone with lived experience in the hope of doing a better job at representation is a value judgement, a good choice in my opinion, but one you needn't necessarily take. maybe you do want to write a character that has a cool as fuck unrealistic robot arm as a power fantasy, or a comfort blanket… i did.

i've been slowly writing my own probably terrible scifi epic for over a decade now, and when my arm was giving me hell back then, i'd take great comfort in this fantasy of my protagonist with her chunky robot arm, the terrible traumatic suffering of her loss, overcoming, the power and ability her advanced prosthesis gives her over others, that she alone has access to, because others are not willing to make the sacrifices required. inspiration porn. awful stuff to me now, but empowering to me then. as i grew and gained direct experience, i slowly reimagined her, rewrote her, ship of theseus'd her into an entirely new character; a reflection of me now, bitter at the whole thing, spiteful that her natural flesh arm evokes fear and distrust, but unwilling to suffer the pain and frustration of her unnatural prosthesis just to make others comfortable and respect her as "whole", however artificial that whole is. and as with the ship of theseus being two ships, once i realised the transformation, i re-added the old protagonist back in whole cloth as a separate character; proud of her robot arm and its power, but in new context, as a foil and antagonist, an in-universe military prosthesis propaganda figure to reflect how i now feel characters like her exist to us, the readers.

i'm not just sharing that as egotistical self promotion, but to highlight that, even if i sit here begging you all up and down not to write characters with robot arms for how bad and unrealistic they are; there's still something genuine and true that their inclusion can say. the great thing about the story that you're writing is that only you can write it, as they say. but i whole heartedly believe that to write to your best, you have to be aware of what you're writing and why. as tempting as it is to feel these characters form naturally in us and therefore we're averse to changing traits about them that feel organic and self evident; as authors we have omnipotent control over the text, every trait and detail is a reflection on us, so we'd sure as hell better understand why we're choosing to write a character with this trait. because anything you write without being aware of intent will take on its own meaning in the space between.

and on that note, if i don't say this, i'm leaving it to be inferred: i definitely don't want to appear to come down on the side of saying "you cannot write an amputee unless you are one", because we are rarer than single young bisexual unicorns! and it would be a tragedy if anyone read through all this and then turned away in fear, deciding to never write an amputee character (with or without robot arm) because they feel they can't do it justice… believe me, no matter what anyone says, some hack writer somewhere is going to keep writing adam jensens and winter soldiers. don't let them be the only voices in fiction! just try to do your best.

so my ultimate advice on the topic of writing a character with a prosthetic limb is to ask yourself one question in two different frameworks, and meditate on what you feel the answer is:

why does she have a prosthesis?

from a doylelist perspective as the kids say, as an author with omnipotent control, why are you choosing to write about this topic? why are you choosing to give this trait to this character? what does it say about how you view ability and disability, what makes a person normal, and what our society values? will you let her be in her natural body? or will you give her a prosthesis, force her to wear it by authorial fiat, or author her a meaningful reason to choose to? if yes, be sure you know; why did you give her a prosthesis?

and from a wastonian perspective, diegetically, inside the story, why does she choose to wear a prosthesis? what does it say about her inner character, and how she interacts with the world? how does she feel about doing it, is she prideful and loves the attention she gets, or does she resent whatever necessitates its use? how do people in this world view ability and disability, what does this society value? and above all, whatever the answer to these questions, whether or not she uses a prosthesis or is badass without one, how does she deal with the eternal freezing cold that every amputee ever feels constantly in their residual limb and why does nobody make a heat pack that fits over a nub without drafty gaps???

i can't outright tell you how to write a good upper limb amputee, but if you at least know why you're writing one and for what purpose, you're on track to write the best character that you can. that's the best advice i can give… other than, like, this whole rambly mess.

and, as a reward for reading this far, please have a very blurry cryptid photo of my cat doing his old man sit:

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