Disability Pride - Blog Posts

When the pain hits THAT hard that you need to work while laying down

A PSA from my D&D Characters in light of the recent election.

I don't live in America, but like so many others we are feeling the ramifications of what happened and how much the right's hate has emboldened facsism and hate across the world.

I can't do much alone and I don't intend to, but hopefully myself and my art can help you find just a bit of hope. Enough, at least, to take care of yourselves and eachother, and enough to find the strength to keep fighting for a brighter future.

Please remember that in a system that wants you gone, caring for yourself and eachother is a form of rebellion they will never be able to take away from us.

We will survive this.

CMT MENTIONED CHARCOT MARIE TOOTH MENTIONED!!

Hello! Im a person with CMT and I've NEVER seen it nor AFOs in any media, hell, most doctors I go to me and my mom(who also has it) has to explain it to them Most doctors dont even know it exists I can count on my hand the people outside my family who know it exists when I mention it to them

For those who don't know what CMT IS:

First of all, no, despite the name it does not effect the teeth directly, that was the name of one of the people that discovered it Though it is a genetic neuromuscular condition. This causes hand tremors, trouble walking, doing fine motor tasks, and a whole host of things this is already too rambley to get into. Though it can effect some people very very differently.

For me:

I struggle with buttoning and my hands are always shaking

Walking too long and standing too long hurts and can hurt badly, sometimes to the point I have to take a whole day of break, though I can walk

One of my feet look like a crushed soda can (high arch + hammertoe), the other is flat as a pancake

Interestingly, though I didn't know those without it could, I can't move my toes individually! Nor spread them! They move as one whole beast

If you need anyone to hit up on the topic of CMT, feel free to msg me! Though remember that it can show up in many different ways, in my family theres 4 people we're sure have it and a few young kids showing signs

Thank you mod Sasza for bringing this up, I now have another to add to the list of those I know who know it And sorry for how rambley this is! Im just happy to see others like me out there

What are some disabilities you've never or extremely rarely seen represented? As in no one's tried at all as far as you know, not just trying badly - people are at least aware wheelchairs are a thing.

Hi! Interesting question, since there's quite a lot of these (and a million of ones that I only saw done badly).

For the sake of my sanity: I will not include disabilities that I only saw represented as a one-time curiosity on a medical show because I don't feel like this counts for anything to be honest (and because some of these shows have 27 seasons and covered literally all existing conditions with 5 minutes of screentime each). Other than that, these are all disabilities I have never seen in any published media, and the vast majority of these I have not seen mentioned even in the online spaces focused on writing disabled characters (including places like our inbox).

One of my own facial differences. I don't know a single character with a permanent cranial nerve disease. Which is kinda wild to me because facial nerve palsy is really common in real life. I'd like to see someone with permanent paralysis on their face, regardless of how similar or dissimilar it is to what I have going on.

Profound intellectual disability, as in the kind where the person actually needs 24/7 care and requires help with all activities of daily living. All the intellectually disabled characters I've seen have been on the milder side - which does make sense considering the vast majority of people with ID are mildly and moderately affected, but I'd still like to see some more variety.

Spinal muscular atrophy. To be honest I was 100% sure I was missing some obvious character from some bigger piece of media because there was just no way there was none, but I wasn't able to find anything. So as far as I can think of right now, I have never seen it represented. It'd be cool to see characters with SMA of all the different types.

In a similar vein, most muscular dystrophies. Pretty much all the "characters" with them are just real people playing themselves, so I personally don't really count it (?). But even then it's basically impossible to find anything representing MDs other than Duchenne and maybe Becker.

In an also similar vein, just severe disabilities in general. Writers are allergic to the idea of making a character who has significant limitations and needs a lot of help to perform daily functions. Sometimes it's the age-old argument that the character "can't fight so what's the point" that I see online with some frequency (as if there aren't other things to do in an action series), sometimes the writer is just too ableist to consider thinking of severely disabled people as people so it doesn't cross their mind that writing a living human being who needs help with eating is a possibility. Pretty much all characters that I know of with high-needs autism, high cervical SCIs (from C"0" to C4), severe brain damage, severe muscular dystrophies (as mentioned), severe/profound intellectual disability (as mentioned...), non-mild SMA (...as mentioned...), locked-in syndrome, ALS, they mostly don't exist; sometimes they do and die/are murdered because of the "death>being disabled" sentiment. Disabled lives are worth living and this absolutely needs to be represented more ASAP.

Most autoimmune conditions. I'm blaming it on the fact that 99% of characters that could be seen as having them just have Vague Unidentified Something that makes them Vaguely Weak. I have never heard of a character with Graves' disease or Addison's, named or at least implied enough to reasonably assume that's what the author meant. For the most part all that's out here is just Vaguely fragile characters who are Vaguely staying in hospitals and getting Vague treatments. It could be meant as representation for anything but represents nothing because it's all empty and nonspecific (I'm NOT talking about undiagnosed characters here, diagnosis or not there are still symptoms one can actually show in the story). Some conditions are more difficult to show than others, but it doesn't change that it'd be cool to see more of them and for them to actually get named. Especially in modern settings where these conditions very much have names that can be said (even in passing) and specific symptoms that can be shown in literally any setting.

Ehlers Danlos syndrome that's not the hypermobile type. Sun Spider has hEDS and she's cool as hell but other EDS types are just completely forgotten to the point that unspecified EDS is presumed to be hEDS. There's nothing here for the classical or vascular types, let alone the ones described as rare (you don't even see pEDS or kEDS mentioned on a lot of EDS info guides).

This kind of "single type of condition with multiple types makes up 100% of existing representation" is really common for a lot of disabilities, actually. Have I seen "representation" and representation of oculocutaneous albinism? Yeah in like every other bad fantasy series. Have I ever heard of ocular albinism being included in media? Chédiak–Higashi syndrome? Hermansky-Pudlak? All the other ones that no one's ever talking about? Absolutely not. Even in the online writing space, all I have seen is a single character with one of these (actually made by one of the other mods of this blog).

You are very much correct in that people know about wheelchairs. However, a wheelchair can have a lot of variables that people are very much not aware of. 99% of wheelchair user characters use either a manual chair or a transport chair. This leaves out the borderline-mystical motorized wheelchairs. Right now I can think of one character who uses a modern-day, realistic powerchair; Saraqael from Good Omens. That's it. People are still more or less aware of their existence though, even if it's just the "oh, like Stephen Hawking?" angle. But do they know of chin control? Sip 'n' puffs? Foot joysticks? Lever drives for the manual ones? No. Manual-shaped low backrest powerchairs are mostly out of the picture, wheelchairs modified to be propelled by foot are literally seen as a meme. Wheelchairs, despite being the disability symbol, don't have as much awareness as one would like to think.

List of disability aids I've never seen shown anywhere: posterior walkers; ankle-foot orthoses (I saw a KAFO once!); group 3 powerchairs with all their neat functions; platform crutches; refreshable braille displays; adaptive strollers; basically any of the aids made to help with holding objects... These are whole groups of things that don't get shown. Don't get me started on how non-oral communication systems are non-existent outside of American Sign Language.

A lot of the facial differences mentioned in this post.

Also, I don't really take into account how rare or how common these disabilities/aids are because 99% of writers aren't doing it either. There are more characters with ridiculously depicted congenital insensitivity to pain (is there a single writer out there who read about the symptoms outside the name of it?) which is obviously rare (and with high mortality) than ones with diabetes, which ~10% of humans worldwide have... There is roughly 0 correlation between the prevalence of a disability IRL vs in media.

The unfortunate issue of writing characters with a rarely represented/straight up never represented disability is that there will be less information about media tropes and the like, so you might need to be extra careful and talk to more people (or just get a sensitivity reader). When in doubt try to reach out to people with said disability and compensate them for their time!

mod Sasza

Thank you for your ask! I’m going to try to mention things Sasza hasn’t, though the list isn’t going to be incomplete since there are so many disabilities I’ve known people with but have never seen represented in any form (movies, shows, books, or podcasts).

Marie charcot tooth disease. I know multiple people with it but have never seen a character with it, or even any character with AFO braces (I feel like I’ve seen most mobility aids at least once but never has media even mentioned AFO braces?).

Diabetes, type 1 or 2. For all people talk about it in media (and usually negatively..) they never give it to their characters! Meanwhile it’s possibly the most common disability the people I know have.

More chromosome difference! There are so many chromosome syndromes, Turners, Williams, Cri du chat, Trisomy 13 or 18, and more. When I see a chromosome disorder portrayed it’s always down syndrome (note: I’m not saying don’t give your characters ds! It’s underrepresented in media still, but it’s also the only chromosome syndrome I’ve seen represented.), and even then most of the time it seems like little to no research has been done on it.

COPD (chronic obstructive pulmonary disease). It’s a fairly common disability that (9-10% of the population has it, aka roughly 780 million people!) should be portrayed more, and the fact that it’s completely ignored when people make speculative fiction, sci-fi, or post apocalyptic fiction about a more polluted world seems like an oversight to me (though please don’t only write people with COPD in these stories, they can be present in any genre!)

Congenital hand/arm differences [also foot/leg differences, but characters rarely take off their shoes]. Radial club hand, cleft hand, contractures, oro-facial-digital syndrome (OFD), congenital constriction band syndrome, anything!

Ambulatory mobility aid users. If someone is a show is using a mobility aid [which is already pretty rare] they’re using the same aid at all times. There’s no representation for people who use aids at different times for different reasons [such as fluctuating symptoms, depending on the path/time spent outside, safety, comfort, etc.] Every time I’ve seen a disabled character moving without the aid they previously had, it’s used as a reveal that they were faking the whole time, which directly impacts how abled people see ambulatory aid users in the real world.

Ostonomy bags and/or catheters. I feel like if people saw more characters with these, there would be much less stigma around them [I also recently saw a tiktok of a person who made decorative ostonomy bag covers for a friend to match their outfits, and decorating aids is so cool I want to see way more of that!].

Actually on that note, more aids in general! There are so many disability aids such as feeding tubes, ventricular assist devices, tracheostomy tubes, silver ring splints, I really want to see them more!

I hope this helps with your question! In truth the answer would be “almost every disability” since it tends to be a handful that get represented with little to no research about them.

Mod Rot

Hello,

Acute confusional migraines. These are a severe type of migraine that come with delirium-like changes in mental status. Most ACM patients are children who grow out of it, but some people either continued having them into adulthood or started getting them in adulthood, like me.

TBI that occurred when the character was very young, to the point where they either don't remember their life before it or barely remember it. It's a very different experience

Chronic headaches. Not chronic migraines, chronic normal headaches.

Vocal slur that's not from substances or a temporary head injury, that's just how the character always talks.

Myofascial pain syndrome, which is kind of like fibromyalgia's little sibling.

Bilateral waddling gait.

Global aphasia, which is a severe nonfluent aphasia that causes the loss of all or nearly all of someone's language abilities, both expressive and receptive. Here's the Wikipedia page on it

Psoriasis

Mod Aaron

Hi,

Obviously so many things have already been mentioned so I'm just adding a couple things I thought of:

Like any heart/cardiovascular condition that isn't "girl with an unspecified weak heart." And, listen, my favorite ballet has this trope – but the ballet's defense is that it was written in 1842, before we knew literally anything about any heart conditions. Modern-day media doesn't really have this defense.

On that line, pacemakers. Lots of people use pacemakers, and not just old people either.

Crohn's disease. It's not a particularly rare condition, but I have never seen a character mentioned to have it, or even a mention of it past a line or two on a medical TV show.

Narcolepsy. It's rare, yes, but not extremely so. And narcolepsy not as a "haha so funny they fall asleep," because it's not a joke, it's a health issue that can be really stressful and frustrating.

That's all I can think of right now without repeating myself.

Mod sparrow

Adding on a few of my own!

With all the jokes in media about going gluten-free as a fad or an example of being stuffy, I've never seen a character with Celiac disease or complications from it.

Adding to that - vitamin deficiencies are very common side effects of so many disorders and never seem represented, the most common being iron deficient anemia and B12 and vitamin D being other common ones.

Food allergies or severe allergies are another thing that's become a joke but is both difficult to accommodate for and more common than many people realize. -Mod Bert

Hello!

I think everyone else covered most of it. One thing I want to add is digestive conditions or conditions that affect the digestive system in some way. They're very common but not rarely represented and there's a lot of stigma around them.

The way they're written doesn't have to focus on their washroom habits either. It could focus more on necessary diet changes, medication they need to take, etc.

When I say this, the conditions that come to mind are things like Irritable Bowel Syndrome (IBS), Crohn's Disease (Which was mentioned earlier), Celiac Disease (Also mentioned earlier), Lactose Intolerance as well as some lesser known conditions such as Hirschprung's Disease and Achalasia.

Cheers!

~ Mod Icarus