#i would rather people who don't need mobility aids use them than have people struggle because they don't want to be seen as a faker

[cripplecharacters]

Hi! I have a myriad of minor chronic conditions and symptoms, but nothing that's actually been identifiable enough to be diagnosed by a doctor. That's a relevant piece of information, because there's a character who I'm writing with more severe/debilitating versions of some of my own symptoms, and I'm struggling with giving him any actual defined diagnoses because of it. The actual question here is: If I'm basing these symptoms off of things that are happening with my own body, and the character is not in a situation where he'd get a diagnoses in-universe, is there a reason I can't just leave it as a mystery?

I suppose the main reason I'm struggling with the question in the first place is that upping the severity of the symptoms in question means that, unlike myself, the character will be using mobility aids, which makes me feel like I should do more research on why he'd be using them. I have no idea why, once in a blue moon, my right leg just decides to refuse to hold my weight for 10-45 seconds, but I do know that if I know that if it happened more regularly/for longer periods of time I'd probably invest in a cane due to instability walking. I'll be posting this work in a space where people will be able to ask me questions about it directly and I can already feel the comments being typed lol. So, I feel like I should have an answer beyond just "His symptoms are based off my own and unfortunately I don't have a diagnoses", but like... do I actually or am I just getting in my head about this?

Hi,

It’s completely okay to have a character who doesn’t have a specific condition or diagnosis you can point to if you’re basing it off your own life experience.

The truth is that this happens all the time. I also don’t really know why my knee is awful and sometimes can’t hold my weight or is incredibly painful to bend, and I’ve been to doctors (who had suggestions but no specifics) and was prescribed physical therapy. I did the PT. It didn’t do much, but I tried it.

You clearly have an experience with your conditions and symptoms and just because you haven’t gotten a diagnosis doesn’t mean your disabling symptoms aren’t real. It also doesn’t necessarily mean you’ll never get a diagnosis, either.

I completely understand your hesitancy, though, because the truth is that some disabled characters are created with a vague idea and end up having some sort of Ambiguous Disorder that is just for plot reasons. That can be harmful and ignore the realities of real-life conditions and disabilities just for something to be more Appealing or Plot Relevant.

But it doesn’t look like that’s what you’re doing at all—you are in fact pretty well-researched, because you’re basing your character primarily in your lives experience and, in good faith, making them not exactly the same as your own.

“His symptoms are based on my own, and I don’t currently have a specific diagnosis” is a reasonable answer. It’s true, and it’s not dismissive or misleading in any way. You can also add “I did research on how A and B would make someone need/do X or Y,” as needed. Like specific mobility aid research, or potential conditions, or related symptoms.

Overall, you can feel confident in your creation of your character and that your depiction is reasonable, and it also might make you more comfortable to answer questions if you feel equipped to elaborate about the symptoms or the aids rather than about the diagnosis.

Hope this helps! :)

— Mod Sparrow

#howisa-raven-likeawritingdesk #mysterious disability #mobility disabilities #mod sparrow

[themathomhouse]

this disability pride month, stop making jokes about people in wheelchairs standing up or walking.

can I stand and walk? sure, for a short while and with pain. the consequences for trying to be out all day without a wheelchair are that I'll be in bed for the rest of the week, too tired and in too much pain to move.

but the government won't give me my own wheelchair because they have the same attitude as these jokes - I can stand up, so I don't need one. exercise is good for you, you should walk!

it keeps me trapped in the house, unable to do anything more than short stints anywhere without borrowing or hiring a wheelchair - one that causes me pain to sit in and relies on someone to push me (usually with difficulty), because they're not going to have a high-end chair for that sort of thing.

it's not a miracle that a wheelchair user can stand or walk. it's something we should aspire to see more often.

#disability #disability pride month #chronic fatigue #fibromyalgia #cfs/me #post exertional malaise #like fucking hell people we should really be long past this by now #why am I seeing these bullshit jokes on my dash in twenty fucking twenty three #i did a short walk to a cafe yesterday because I thought I was up to it #and my right leg has seized up #my ankle can barely take my weight and my hip won't move properly #also lol I almost certainly have hEDS but cannot persuade a doctor to give me a referral #in summary #stop being fucking dense #i would rather people who don't need mobility aids use them than have people struggle because they don't want to be seen as a faker #or have people think that you have to reach a certain level of severity before you need it #also if I had a wheelchair I would bring my cat with me more places but that's by the by

[brilokuloj]

I've been trying harder lately to not be paranoid and assume bad faith in others, so I have chosen to believe that people who post "eww, humans" might not consider how their sentiment impacts people who are already hurting. Frequently, I think they are posting it because of their own bad feelings and struggles, and don't think about how that would make their friends and community feel.

In fact, a lot of the "human bodies are bad" sentiment revolves around how human bodies are impractical (disabled bodies are negative), sex is nasty and genitals are weird (transitioned bodies are negative)...

So, if I may, here are things I think we need more of:

Human positivity, or at least tolerance, especially of the gross and yucky and boring parts

Furries/aliens/robots/etc who love their human partners (and the focus is NOT on how cute or sexy the nonhuman is for doing so). Relationships that are mutual and not a Connecticut Clark joke.

Humans from an alien but not negative perspective

Nonhumanity as not a better but simply alternative experience

and I guess probably this far in you're already thinking "most media is human-positive" but MCU dudes and anime boys are like pugs to me, they can't live.

Characters that live without prosthetics, or get feasible or life-impacting ones, rather than Cool Robot Parts; aesthetics (or sex factor.) should not justify or make up for a disability; a character that makes you think "gee, I wish they would cut my arm off!" is not disability representation. I have experienced people listing Junkrat as proof they could be attracted to me as a mobility aid user.

Humans will not destroy machinery, no robot uprising, but rather they maintain the mutual relationship they've always had (and less of using robots as a stand-in for autism representation. My God.)

Many human women were computers before machines were computers. I just think this is cool and not really explored :(

Top surgery scars that are not like cool perfectly-symmetrical explosions or jagged teeth. Get a tattoo if you want, but a lot of the time scars are raised and shiny, which I rarely see either.

I doubt anyone in the world enjoys their period, but they're frequently pointed to as "proof" that humans aren't worth being. If your periods make you lay down on the floor and want to kill yourself for a week, you seriously should see a doctor if you can. I didn't know until it was way too late that I had other options, because periods are too yucky to candidly discuss and no one told me it wasn't normal.

Testosterone gives you acne. Spironolactone makes you need to pee more. There's a lot of unexpected things like that, and they are not objectively gross or sexy; they're just things that happen, that deserve to be discussed.

Fursuit poodling (having uncovered skin in a partial fursuit). It's not gross, it doesn't 'break the magic'. Fursuiting is sweltering exhausting work, and real humans are inside them, and they deserve to be appreciated.

It can be really hurtful to blithely say that human genitals are disgusting, especially in front of people who may want to one day pursue affirmative surgery. If someone personally doesn't like dongs, I wish they would just say that. Jeez.

Nobody is "better" for having an aversion to human bodies for whatever reason. I understand personally that it can be isolating, especially if those reasons are trauma-related. But turning your sexual attractions into a matter of you being "better", or a clubhouse, is not really coping with it. Disgust is not a judgment of morals or quality. It's an emotion, and one that can be very hurtful to people who are already getting hurt.

Because nothing is Good or Bad. It just is what it is. Judging people's right to exist and be depicted, based on sex appeal or morality (or god forbid, purity, which I've seen more of recently, somehow completely ignoring the religious abuse connotations) is... messed up.

And to make this post not just me complaining, you can share your creations or ideas that you feel like apply, if you want :)

#my writing #juxtahumanism

[astraltrickster]

Speaking of my plans to get a wheelchair, I wholeheartedly think it would have the potential to be an extremely good thing if people just used personal mobility devices for convenience and extending their movement range, disability or no. Besides the obvious benefit of letting people get more day out of their day because everyone has a limit to how much they can do unassisted-

For one, it would encourage people to stop treating wheelchair access as an afterthought if it was just socially accepted that ANYONE might decide at ANY moment "ugh I'm too tired for this" and whip out a folding scooter or ride into the store on a Segway Ninebot or a hoverboard (speaking of which we NEED to update some of the laws about those because the battery safety issues have been mostly resolved and they make good cheap manual-to-power wheelchair converters, if we just require the batteries to be inspected and certified we will be FINE) or whatever else - doubly so since a lot of the time this treatment of wheelchair access as an afterthought isn't deliberate callousness but just that nasty little "out of sight, out of mind" human design flaw acting as a self-fulfilling prophecy (disabled people are barred from existing in public due to inaccessibility, people with the power to change it do not see anyone struggling with their way too small aisles and unnecessary uncut curbs and threshholds, well-meaning people think nothing is wrong because they don't SEE the problem, the cycle continues).

For two, it would really help the walkable cities movement to blur the line between an assistive device and recreational equipment (even further than it already is) - both in terms of making more people WANT such a thing (it is often SO much more convenient to be able to roll to the corner store, manually or otherwise, than it is to walk there, and more enjoyable for many, especially since American culture treats the act of walking as some kind of drudgery you only do because it's your job or as an obligation to Stay Fit), and in terms of ensuring they're designed to be accessible to everyone who uses mobility devices whether for 5 minutes out of their day or 24/7 because of the reasons outlined in the previous paragraph.

For three it'd stop me and people like me from being asked "BuT wHy Do yOu nEeD tHaT iF yOu CaN dO aLl ThIs OtHeR sTuFf????" (ID: "but why do you need that if you can do all this other stuff?" written in alternating caps cynical/mocking text) - yes, I can do cartwheels and handsprings and excel at obstacle courses on a full "tank" of spoons, partially because of the same biological weirdness that makes me need a wheelchair when I'm overly fatigued, now leave me the fuck alone about it thanks!

For four, reducing the stigma against using mobility devices would be a really good thing for a lot of people who are in denial of being disabled for any reason. Fine, Grandpa, we'll say you're right, we'll say you don't NEED it, we'll believe you when you say that time you faceplanted in the neighbor's garden last week was just a one-off isolated incident, but wouldn't it be more FUN to scooter down to the store with the whole family?

And if we tie this into discussing disability as a spectrum with no clear lines between levels or even between many diagnoses rather than trying to rely on some kind of strict dichotomy of "disabled/not disabled", we can not only mitigate the issue of people assuming that actual medical accessibility aids are just a convenience rather than a necessity, but possibly even lessen the EXISTING problem of people doing that, especially in the cases of people who already use things commonly seen as recreational equipment as assistive tech. "Some people use these things because it's fun, some people use them so they can move for longer, and some people can't go anywhere at all without them" is pretty easy to explain to a kid, after all, let alone an adult.

tl;dr More people should have mobility devices even if they don't think they "need" them.

#disability

[homemobility3rd]

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[homemobility2c]

Tub To Shower Conversion RI

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[mindfogandsleep]

Hey, I've been dealing with chronic fatigue for almost 5 years now because of recurring glandular fever (mono), basically all I've been told by doctors is to sleep it off, have you ever received advice/treatment that may help other than 'sleeping it off'. I have to work heaps to live and I study at uni full time (online), fitting that around at least 12 hours of sleep a night is becoming ridiculous, honestly any advice would help, I know I don't have it the worst but I'm reaching my wits end Xx

Hi lovely,

I apologise for the delay in answering it. I wanted to make sure I had the spoons to actually give this the attention it needed rather than just half-arsing it. It’s really shitty that your doctor is just telling you to sleep it off, giving that non-restorative sleep is one of the biggest symptoms of CFS. Unfortunately, CFS is an illness that the medical profession doesn’t understand much about and while a number of doctors do genuinely want to help, there is a distinct amount that will just write you off and assume you are exaggerating or let you slip through the system because they can’t help. Which sucks. Big time. Before I start with any advice, I want to make it clear that I am not an expert, I am not a medical professional. I am literally just a person with CFS and some - probably rather unhealthy – coping mechanisms.

The first thing I want to say is that it is not a competition. A lot of people with both mental and physical illnesses are made to feel like someone else has it worse so they don’t have the right to complain. This is bullshit. Everyone has the right to look for help, to seek advice and to be struggling with the hand that has been given to you. Don’t feel bad because you’re struggling to cope even though you’re still studying and someone else can’t get out of bed. You still have the illness and you are still valid as a person with it. Never listen to people who tell you not to complain because someone has it worse. If we listened to that no one would ever have the right to complain. And we do, because it fucking sucks a lot of the time.

Time Management

Time management is important for most people but I would say more so for spoonies. Life is difficult when you need to factor in extra rest and sleep in with work and study and basic living things. So, I would say work out when you are going to do what. This is easy when it comes to things like work because you already know your hours. If you struggle with cooking on top of everything else you are having to do, then keep microwave meals in so that you don’t have to waste energy preparing food. Never skip meals because you don’t have the energy for them because that will only make you feel worse [yes feeling worse is always possible].

Factor in time to study but factor in more time than you will need so then if you are feeling too bad to study at one point, you have extra time later so you won’t get behind, despite it. Take regular breaks in the study time, whether this is just putting your laptop or papers down and closing your eyes for five minutes, going to get a drink or stretching your legs, it really doesn’t matter but your brain will honest to god give up if you try and force yourself to concentrate for too long.

Aids

When it comes to studying if you struggle with things like reading a lot of information at one time, then I would recommend trying to get audiobooks if it is actually books you are reading. This is harder for text books, but shit, like highlighting the information or following with a ruler or whatever, might come in helpful. Unfortunately, I’m about to go back to uni so I’ve not quite got uni skills as a spoonie down yet.

If you need it and it would help you, use mobility aids. I got a walking stick recently and honestly it has been a lifesaver. It has made a huge difference to whether I can go out or not some days. Don’t be afraid that you aren’t ill enough or whatever because it really isn’t a competition and if it would help you, you really should use it. I got mine dead cheap off Amazon and it’s been wonderful.

Help

There, unfortunately, is not a lot of help out there for CFS because there is not a lot known about it. Doctors can be rather useless saying stupid stuff like sleep it off or just pace yourself which is not at all practical. However, it is still important to find help where it is. Reaching out to spoonie communities is a really good step and people always seem to want to help other spoonies because we all know how much is sucks when you don’t have support.

The other thing is to be upfront with your employers and university about your illness. Some employers are wonderful, some are shitty at fuck [I’ve had both], but they cant accuse you of messing them around if you are honest from the front. If you tell them how it affects you and what you might need as accommodations, they should be willing to help you out. Don’t be scared to ask for extra time for assignments and things if it might help you out. There is support out there it can just be hard to find sometimes.

I hope this is able to be of some help for you and hopefully some people will add their own advice as well which you’ll be able to see. Feel free to message me again if you want anymore more specific. Love and Spoons.

#Spoonie #chronic fatigue syndrome #chronic fatigue #mine #josie makes things #Anonymous #My writing