Writing Profoundly Intellectually Disabled Characters
[Plain Text: Writing Profoundly Intellectually Disabled Characters]
While there is a glaring lack of intellectually disabled characters - except maybe big, physically strong, white men who can’t “tell right from wrong” or have a personality - in all sorts of media, specifically profoundly intellectually disabled characters are next to non-existent, with the existing ones being used more often as plot devices rather than portrayed as human beings.
This does make a degree (and not more) of sense considering that 85% of ID people have it mild, 10% moderate, 3.5% severe and only 1.5% has profound ID, the larger group inevitably gets more representation (which doesn’t make it good, but it does exist). However, it hopefully doesn’t need explaining that minorities deserve to be represented too (...and represented well), so this is what this post will be about.
Please don’t treat this as your only source on writing a character like this (even though I’m willing to bet it’s the only one like this, at least on tumblr), do your research and always check other sources.
Also, for clarity: intellectual disability isn't an umberalla term for "mental/brain disability". It's a specific, singular diagnosis that used to be known as "mental [r slur]". It's not the same as brain damage, autism, dementia, dyslexia, and anything else that's not specifically "intellectual disability". It's something that you are either born with or acquire early in life.
How do I Include Them in the Story?
[Plain Text: How do I include them in the story?]
A profoundly ID person will spend the majority of their time either at home or in some sort of care facility since they will require 24/7 help. The easiest role to put them in is probably a family member of another character. I've mentioned on this blog before that the "ID characters always end up as the annoying younger sibling" thing is overdone, but none of these necessarily have to be true for this suggestion to work (especially not the "annoying" part).
A non-ID character could have an intellectually disabled older sibling, twin, cousin, uncle/aunt, the sibling of a grandparent, etc. Seriously - a severely disabled person can be an adult, or even an elder. Just not as a parent, since a profoundly disabled person can't consent (a lot of ID people very much can, but this is the one disability where your level of functioning is baked into the exact diagnosis - profound ID comes with the inability to consent/understand the consequences enough to consent).
"They're a family member" is basically the easiest "excuse" to include a profoundly intellectually disabled in a story (and, as a bonus, you don't have to figure out how the other character would react to meeting them for the first time, since they probably knew each other for a long time already).
If your story isn't about the profoundly disabled character and instead just features them as a character, it would be much easier to not make the other character their primary caregiver. It's simply a ton of work and the character wouldn't have time for fighting dragons and whatnot - it'd be easier to have the abled character spend time with the disabled character at home (or care facility; you can very much visit someone in one) hanging out rather than actually doing the caregiving part.
Outside of a home and a care facility, there are also day care programs that some people might attend. This is the rarest solution out of the three mainly because of financial reasons, but also these resources aren’t as common for people who can’t walk, learn self-care, etc. Going to one takes time (the profoundly disabled person isn’t gonna walk there by themselves) and probably requires a specialized van (that you can bring a wheelchair in, which is incredibly expensive). Most day care programs are focused on people who are moderately or severely ID at most. One made for profoundly ID people would require 1:1 aides, which generally means the programs are much smaller for logistical reasons, but also even more expensive. For most people, too expensive without funding. Basically, this is an option, but you have to consider your character’s financial situation and/or what kind of financial support do disabled people get where they live.
Another way is having the disabled character in some sort of high position - in real life there were quite a few cases of profoundly and severely intellectually disabled royalty. Depending on the place and time there might have been pressure to not let the public see them, but this wasn't always the case. The biggest example of the latter was probably Emperor An of Jin (the first Jin, Eastern one) who was, as his title suggests, crowned at some point. He didn’t actually rule (his uncle did) but yes, you can have a severely disabled person as the head of a monarchy, it’s not without precedent.
In fiction you can do whatever you want anyway when it comes to ableism, you can have it be there, or you can have it not be there - and if it does exist then there are still different kinds of ableism you can portray that aren't the "literally killing-the-disabled-baby/hiding-them-in-some-dungeon level of eugenics" kind. Maybe a rich family who cares about their image would actually be unable to shut up about their kid to show how "saint-like" they are for caring for the disabled - it is unfortunately realistic, and can be a potential way to have the character exist in public, not ignore ableism, and also not go the aforementioned literally-just-murder route that writers usually do to show an ableist family.
Characterization
[Plain Text: Characterization]
Warning; the bar here is somewhere in the Earth's inner core. If your character has a single characteristic beyond aggressive/loud/unmanageable*, they're automatically at the top of most complex fictional representation of severely/profoundly ID characters. Congrats.
* - Some people are those things but, unsurprisingly, they're other things too. A lot of profoundly ID people can actually be completely quiet - you notice people who are loud because they're loud.
As with literally every character, you need to figure out what they like and not like. This can be quite literally anything, but try to think of the basic stuff. Do they have something they really enjoy eating (and conversely - something they refuse to eat)? Do they have some sort of comfort toy or object they don't want anyone touching (and maybe showing them playing with it with a different character could be a way to show how much they trust them)? In more modern settings, do they have a favorite show they always bug everyone to put on? Are they really clingy or do they hate physical contact (again, maybe they only enjoy it from a specific character)?
Another characterization could be comfort objects. A lot of profoundly ID people are autistic (which I'll touch on later) and will have an object that they bring everywhere the same way that non-ID autistic people might. There's nothing really specific here, just another layer of "this character is a Person". Maybe they have a blanket they really enjoy chewing because the texture feels good or some sort of plushie they like to throw around because it makes a sound they find funny. Lots of options. Maybe they have a personal “tell” to let others know they want their comfort object brought to them.
Keep in mind, you have to show this all in non-verbal manner. A profoundly ID person is probably not using any sort of AAC device (the most robust one I remember seeing right now was a low-tech one with "yes" and "no", but there are probably ones who operate on a larger amount of singular words). This is basically another opportunity for characterization - what do they do when they're happy - laugh, flap their arms, make sounds? - and when they're upset - scream, hit themselves, make different sounds? Obviously, you'd have to take other disabilities into account (e.g. many profoundly ID people won't move much, some might not be able to make much audible sound, etc.) but almost anything helps.
This brings us to…
Communication
[Plain Text: Communication]
An important thing (concept?) I'll throw here is "total communication", which can mean different things in different contexts, but here I'll use it to mean "using everything you can to communicate with someone who cannot do so in a ‘traditional’ way".
Communication can be categorized as having two sides; expressive and receptive. For most intellectually disabled people in general, receptive skills tend to be significantly higher than expressive ones, though there are specific disorders where it’s reversed or equal. As mentioned before, most profoundly ID people won’t speak orally, won’t use sign language, and won’t use AAC (though out of all three, AAC is the most likely one). Some might say single words, but that’s about it. It’s not a “physically mute but can write perfectly grammatically correct sentences” situation, it’s more of a “[single noun]” one, if anything. Receptive skills however are pretty decent (in comparison) and they would probably understand their name, the name/title of their carer(s), names of things they see every day, events they have some frame of reference to (e.g. if they grew up Christian, they would probably know what Christmas is), etc. Your other characters could (and should) talk to them like they can understand, even if they don’t catch everything or even most of it. I say a lot of “probably” there, but the people who can’t do so usually have other comorbidities, which I’ll mention later.
To go back to expressive communication, eye pointing can be used to figure out what the character wants. A change in breathing can be used to tell that a character got stressed. Throwing an object can be used as a hint that the character wants to play. Maybe them reaching towards person A means they want to eat, but reaching towards person B means they want them to sing a song for them. Maybe them making a particular face means they just had a seizure and need to be comforted. Whatever their "tells" like this might be, other characters who know them would probably be able to tell more-or-less what's going on - you don't have to go really in-depth, especially if it's a minor character, but figuring out the ways your character communicates with others will make it feel more like a person and not a Disabled Lamp (“if you can replace a disabled character with a lamp or a sick dog, they’re not a character”).
If you read some of these and go "that's a thing that a child would do" then you're not necessarily wrong. A profoundly ID adult might enjoy activities that primarily kids partake in. This is, I can't stress this enough, not the same as "mentally being a child". Otherwise, a whole bunch of adults on this very website would be "mental middle schoolers" based on the shows that they watch - but they're obviously not. A profoundly ID adult doesn't have the "mind of a baby" if their favorite game is throwing a toy, they have the mind of a profoundly intellectually disabled adult. Sometimes people assume that since ID people aren't mentally [incorrect age], they always "act their [actual] age" and essentially end up downplaying how much some people's ID affects them, when the point is that no matter what you do, you are your age. An ID character who is 26 years, incontinent, constantly puts their hand in their mouth, can't speak, whatever, is mentally 26 years old the same way that they would be if they had a wife and a mortgage.
For the last thing from this section I'll circle back to the assumption that all severely/profoundly ID people are loud, aggressive, etc. - as I said, some of them are (just like abled people). The thing is, this is not always an unreasonable response to being unable to communicate with the people who are caring for you. If you had a pressure sore but couldn't explain it to anyone you'd be pissed off and screaming too. That's an extreme example, but still applies. If someone is severely stressed out (for an abled person, this might be inheriting a ton of debt, for a profoundly ID person it can be a change in daily routine), they can lash out. It's an unpleasant but very much human reaction to have, even if what's behind the ID person's behavior is significantly different from what an average abled person might consider "a good reason".
So I guess my advice is, try to show some empathy to the character, even if they genuinely are loud and/or aggressive. Intellectually disabled people - including the profoundly disabled ones - aren't some alien species that is just mean and hates their caregivers for no reason, some just can't process their feelings the way an abled person might because of their disability. That's not to say that caregivers aren't allowed to feel frustrated - because they are - but that very severely disabled people aren't purposefully evil. As mentioned in the earlier parts, all behavior has a cause, just like for literally everyone. So if the character is being "unmanageable": maybe they aren't some cursed burden, maybe they're just stressed out of their mind and now someone they don't know that well is trying to do *something* to them, which they can't figure out because of their disability affecting their receptive language skills.
Resources and What to Keep in Mind
[Plain Text: Resources and What to Keep in Mind]
Some resources you might read about ID can be potentially misleading. Even if you specifically look for causes of the profound severity of intellectual disability, you will get results for mild ID. That's mainly because people with mild ID make up >85% of intellectually disabled people and those with profound ID make like 1%, so they're a minority in a minority.
Basically:
Down syndrome is a very unlikely cause. It's always listed as the main genetic cause of ID, but that's only true for mild and moderate severities. If you choose any of the common causes of ID make sure it actually has the symptoms you're looking for.
Most profoundly ID people will have either severe brain damage early in life (and this can come with cerebral palsy), cephalic disorders (e.g. microcephaly), genetic conditions that you've never heard of (e.g. Pallister-Killian or Emanuel syndromes, 3p deletion), genetic conditions that you've never heard of for a very understandable reason (e.g. X-linked intellectual disability-limb spasticity-retinal dystrophy-arginine vasopressin deficiency… there are hundreds named in this way), or just have it without a known cause. The last one happens much more often than people tend to assume.
For a reason I'll probably discover at some point, most disorders and syndromes that come with ID are said to have "autistic-like features" rather than being "comorbid with autism". In practice, it's the same thing. Your character is probably autistic.
In the same way, a lot of practical resources will assume that ID = moderate ID (since most mildly affected need no or minimal support, and severely/profoundly disabled ones are a small minority) so pay attention if you're looking at the right things. If it's talking about having a job, travelling alone, etc., then you got clickbaited.
Another subsection here will be comorbidities because there are a lot of them. I’ll mention the biggest ones.
Brain damage is the most common one (except autism) and can vary a lot. There is barely anything I can say about this one, it’s an enormous spectrum that for some people causes disability and for others barely affects their symptoms. Cerebral palsy, especially quadriplegic, is seen a lot and might affect the character’s mobility a lot. Some people might be unable to breathe or swallow and need a breathing or feeding tube.
Deafness and blindness are comorbid with a surprising amount of causes of ID. The thing is, you could take advice for deaf/blind characters as-in for a character that has both (e.g.) glaucoma and mild ID and not change much, but this doesn’t really work for a character who’s profoundly disabled like this. The situation that can happen here is that it’s not actually known if the person is or isn’t deaf or blind because they can’t tell you. As mentioned earlier, some people will have absent receptive communication skills. How do you verify if they’re deaf or just not reactive to language? Some people won’t react to even extremely loud sounds, even if they can hear them perfectly well (besides, a lot of deaf people can still hear some). Same for verifying if they are blind - obviously, sometimes there’s something visual going on, but often there isn’t. Especially since the main causes of both blindness and deafness will be brain-based, not ear- or eye-based. Another character not being sure if the disabled character is blind or just very uninterested in visual stimuli is a possibility, especially with less advanced medicine. This is also why you might see those weird statistics of "between 5-90% of people with [condition] are deaf" kind.
Mobility is almost always severely affected. Some are fully mobile, but that’s simply not common. The average person will be unable to walk independently. It’s not always a muscle or nerve problem (though it absolutely can be), it’s mostly an issue of coordination. Because of this (and understanding physical space), operating a wheelchair (...successfully) might be impossible. This doesn’t mean you should just drop your character in a hospital wheelchair for them to get wheeled around because they will probably need a wheelchair that will actually support them - a headrest, ability to tilt, a harness, all that. This could be done with a powerchair (they can have controls on the back for a second person to operate), a manual wheelchair, or an adaptive stroller.
Now for resources;
One good resource I can recommend is SBSK (which I shared before), to my knowledge this is the only place that interviews severely and profoundly ID people (+their families) and the interviewer is great at actually interacting with many of them.
Most resources on the practical things only ever talk about caregivers (who are very important) but completely ignore the actual person being cared for which IMO kinda defeats the point.
Good luck writing!
mod Sasza
