Writing About Disabilities - Tumblr Posts
Where to Start Your Research When Writing a Disabled Character
[large text: Where to Start Your Research When Writing a Disabled Character]
So you have decided that you want to make a disabled character! Awesome. But what's next? What information should you decide on at the early phrase of making the character?
This post will only talk about the disability part of the character creation process. Obviously, a disabled character needs a personality, interests, and backstory as every other one. But by including their disability early in the process, you can actually get it to have a deeper effect on the character - disability shouldn't be their whole life, but it should impact it. That's what disabilities do.
If you don't know what disability you would want to give them in the first place;
[large text: If you don't know what disability you would want to give them in the first place;]
Start broad. Is it sensory, mobility related, cognitive, developmental, autoimmune, neurodegenerative; maybe multiple of these, or maybe something else completely? Pick one and see what disabilities it encompasses; see if anything works for your character. Or...
If you have a specific symptom or aid in mind, see what could cause them. Don't assume or guess; not every wheelchair user is vaguely paralyzed below the waist with no other symptoms, not everyone with extensive scarring got it via physical trauma. Or...
Consider which disabilities are common in real life. Cerebral palsy, muscular dystrophy, stroke, cataracts, diabetes, intellectual disability, multiple sclerosis, thyroid disorders, autism, dwarfism, arthritis, cancers, brain damage, just to name a few.
Decide what specific type of condition they will have. If you're thinking about them having albinism, will it be ocular, oculocutaneous, or one of the rare syndrome-types? If you want to give them spinal muscular atrophy, which of the many onsets will they have? If they have Ehlers-Danlos Syndrome, which one out of the 13 different types do they have? Not all conditions will have subtypes, but it's worth looking into to not be surprised later. This will help you with further research.
If you're really struggling with figuring out what exact disability would make sense for your character, you can send an ask. Just make sure that you have tried the above and put actual specifics in your ask to give us something to work with.
Here are some ideas for a character using crutches.
Here are some ideas for a character with a facial difference (obligatory link: what is a facial difference?).
If you already know what disability your character is going to have;
[large text: If you already know what disability your character is going to have;]
Start by reading about the onset and cause of the condition. It could be acquired, congenital, progressive, potentially multiple of these. They could be caused by an illness, trauma, or something else entirely. Is your character a congenital amputee, or is it acquired? If acquired - how recently? Has it been a week, or 10 years? What caused them to become disabled - did they have meningitis, or was it an accident? Again, check what your options are - there are going to be more diverse than you expect.
Read about the symptoms. Do not assume or guess what they are. You will almost definitely discover something new. Example: a lot of people making a character with albinism don't realize that it has other symptoms than just lack of melanin, like nystagmus, visual impairment, and photophobia. Decide what your character experiences, to what degree, how frequently, and what do they do (or don't do) to deal with it.
Don't give your character only the most "acceptable" symptoms of their disability and ignore everything else. Example: many writers will omit the topic of incontinence in their para- and tetraplegic characters, even though it's extremely common. Don't shy away from aspects of disability that aren't romanticized.
Think about complications your character could experience within the story. If your character wears their prosthetic a lot, they might start to experience skin breakdown or pain. Someone who uses a wheelchair a lot has a risk of pressure sores. What do they do when that happens, or how do they prevent that from happening?
Look out for comorbidities. It's rare for disabled people to only have one medical condition and nothing else. Disabilities like to show up in pairs. Or dozens.
If relevant, consider mobility aids, assistive devices, and disability aids. Wheelchairs, canes, rollators, braces, AAC, walkers, nasal cannulas, crutches, white canes, feeding tubes, ostomy bags, insulin pumps, service dogs, trach tubes, hearing aids, orthoses, splints... the list is basically endless, and there's a lot of everyday things that might count as a disability aid as well - even just a hat could be one for someone whose disability requires them to stay out of the sun. Make sure that it's actually based on symptoms, not just your assumptions - most blind people don't wear sunglasses, not all people with SCI use a wheelchair, upper limb prosthetics aren't used nearly as frequently as you think. Decide which ones your character could have, how often they would use them, and if they switch between different aids.
Basically all of the above aids will have subtypes or variants. There is a lot of options. Does your character use an active manual wheelchair, a powerchair, or a generic hospital wheelchair? Are they using high-, or low-tech AAC? What would be available to them? Does it change over the course of their story, or their life in general?
If relevant, think about what treatment your character might receive. Do they need medication? Physical therapy? Occupational therapy? Orientation and mobility training? Do they have access to it, and why or why not?
What is your character's support system? Do they have a carer; if yes, then what do they help your character with and what kind of relationship do they have? Is your character happy about it or not at all?
How did their life change after becoming disabled? If your character goes from being an extreme athlete to suddenly being a full-time wheelchair user, it will have an effect - are they going to stop doing sports at all, are they going to just do extreme wheelchair sports now, or are they going to try out wheelchair table tennis instead? Do they know and respect their new limitations? Did they have to get a different job or had to make their house accessible? Do they have support in this transition, or are they on their own - do they wish they had that support?
What about *other* characters? Your character isn't going to be the only disabled person in existence. Do they know other disabled people? Do they have a community? If your character manages their disability with something that's only available to them, what about all the other people with the same disability?
What is the society that your character lives in like? Is the architecture accessible? How do they treat disabled people? Are abled characters knowledgeable about disabilities? How many people speak the local sign language(s)? Are accessible bathrooms common, or does your character have to go home every few hours? Do they have access to prosthetists and ocularists, or what do they do when their prosthetic leg or eye requires fixing?
Know the tropes. If a burn survivor character is an evil mask-wearer, if a powerchair user is a constantly rude and ungrateful to everyone villain, if an amputee is a genius mechanic who fixes their own prosthetics, you have A Trope. Not all tropes are made equal; some are actively harmful to real people, while others are just annoying or boring by the nature of having been done to death. During the character creation process, research what tropes might apply and just try to trace your logic. Does your blind character see the future because it's a common superpower in their world, or are you doing the ancient "Blind Seer" trope?
Remember, that not all of the above questions will come up in your writing, but to know which ones won't you need to know the answers to them first. Even if you don't decide to explicitly name your character's condition, you will be aware of what they might function like. You will be able to add more depth to your character if you decide that they have T6 spina bifida, rather than if you made them into an ambiguous wheelchair user with ambiguous symptoms and ambiguous needs. Embrace research as part of your process and your characters will be better representation, sure, but they will also make more sense and seem more like actual people; same with the world that they are a part of.
This post exists to help you establish the basics of your character's disability so that you can do research on your own and answer some of the most common ("what are symptoms of x?") questions by yourself. If you have these things already established, it will also be easier for us to answer any possible questions you might have - e.g. "what would a character with complete high-level paraplegia do in a world where the modern kind of wheelchair has not been invented yet?" is much more concise than just "how do I write a disabled character?" - I think it's more helpful for askers as well; a vague answer won't be much help, I think.
I hope that this post is helpful!
Mod Sasza
Disabilities that You Should Consider Representing in Your Writing More… part 1
[large text: Disabilities that You Should Consider Representing in Your Writing More… part 1]
While all disabilities are underrepresented in basically all sorts of media, it’s hard to not notice the trend in what disabilities make up the majority of representation. It’s especially visible when having a blog like this, where we can see what disabilities writers even consider including in their writing, and which ones never come up.
One in four people are disabled. With eight billion people alive it means there’s a lot of disabled people, and a lot of reasons why they are disabled in the first place - but this diversity is rarely represented, even on this blog, and anyone who has been following for a while has probably noticed that fact.
To be blunt: there are disabilities other than “amputee” and “(otherwise invisibly disabled) mobility aid user”. Does that mean that it’s wrong to write either of those? Of course not, and we don’t want to imply that it is. Does it mean that when you are deciding on what to give your character, you should think beyond just those two? Absolutely. Disability is a spectrum with thousands of things in it - don’t limit yourself for no reason and embrace the diversity that’s built into it instead.
This is, simply, a list of common disabilities. This is just a few of them, as this is part one of presumably many (or, at least three as of right now). By “common” we rather arbitrarily decided on “~1% or more” - so at least 1 in 100 people has the disabilities below, which is a lot. Featuring!: links that you should click, sources of the % that are mostly just medical reports and might be hard to read, and quick, very non-exhaustive explanations to give you a basic idea of what these are.
Intellectual disability (about 1.5%) Intellectual disability is a condition we have written about at length before. It’s a developmental disability that affects things such as conceptualization, language, problem-solving, or social and self-care skills. ID can exist on its own or be a part of another condition, like Down Syndrome, Congenital Iodine Deficiency, or Fetal Alcohol Spectrum Disorders. This post covers a lot of basic information that you might need. We have an intellectual disability tag that you can look through!
Cancer survivors (5.4% in the US, about 0.55% worldwide) A cancer survivor is a pretty self-explanatory term. There is a lot of types of cancer and some of them are very common while others are very rare, which makes this a very diverse category. Cancers also have different survival rates. While not every survivor will have disabling symptoms, they definitely happen. Most of the long-term side effects are related to chemotherapy, radiation, and other medication, especially if they happened in children. They can include all sorts of organ damage, osteoporosis, cognitive problems, sensory disabilities, infertility, and increased rate of other cancers. Other effects include removal of the affected area, such as an eye, a spleen, breasts, or the thyroid gland, each of which will have different outcomes. Cancer, and cancer treatments, can also result in PTSD.
Diabetes (about 8.5%, ~95% of that are type 2) Diabetes is a group of endocrine conditions that cause hyperglycemia (high blood sugar) for various reasons depending on the type. The vast majority of people have type 2 diabetes, which can cause fatigue, poor healing, or feeling thirsty or hungry. A diabetic person will use insulin when needed to help manage their blood sugar levels. There are many complications related to diabetes, from neuropathy, to retinopathy, and chronic kidney disease, and there's a lot of disabilities that coexist with diabetes in general! You might want to check out the #how to write type 1 diabetes tag by @type1diabetesinfandom!
Disabling vision loss (about 7.5%) Blindness and low vision are a spectrum, ranging from total blindness (around 10% of legally blind people) to mild visual impairment. Blindness can be caused by countless things, but cataracts, refractive errors, and glaucoma are the most common. While cataracts cause the person to have a clouded pupil (not the whole eye!) blind eyes usually look average, with strabismus or nystagmus being exceptions to that fairly often (but not always). Trauma isn't a common cause of blindness, and accidents are overrepresented in fiction. A blind person can use a white cane, a guide dog or horse, or both. Assistive solutions are important here, such as Braille, screenreaders, or magnifying glasses. We have a blindness tag that you can look through, and you might want to check out @blindbeta and @mimzy-writing-online.
Psoriasis (about 2-4%) Psoriasis is a chronic skin condition with multiple subtypes; it can cause intense itching, pain, and general discomfort, and often carries social stigma. It’s an autoimmune and non-contagious disability that affects the skin cells, resulting in raised patches of flaky skin covered with scales. It often (30%) leads to a related condition, psoriatic arthritis, which causes joint pain, tenderness, and fatigue, among other things.
Stroke survivors (0.5-1%) A stroke survivor is a person who has survived any kind of stroke (ischemic, hemorrhagic, etc.). While the specific symptoms often depend on the exact location on where the stroke happened, signs such as hemiplegia, slurred speech, vision problems, and cognitive changes are common in most survivors to some degree. When someone has a stroke as a baby, or before they are born, it can result in cerebral palsy, epilepsy, and other disabilities. We have a brain injury tag that you can look through!
Noonan Syndrome (about 0.1-1% - mild is 1%, severe 0.1%) Noonan Syndrome is a disability that is almost never mentioned in any context, but certainly not around the topic of writing disabled characters. It’s a congenital condition that can cause cardiomyopathy, chronic joint pain, hypermobility, short stature, facial differences such as ptosis, autism, and various lymphatic problems among other things. Some people with Noonan Syndrome might use mobility aids to help with their joint pain.
Hyperthyroidism (about 1.2%) Hyperthyroidism is a condition of the endocrine system caused by hormone overproduction that affects metabolism. It often results in irritability, weight loss, heat intolerance, tremors, mood swings, or insomnia. Undertreated hyperthyroidism has a rare, but extremely dangerous side effect associated with it called a thyroid storm, which can be fatal if untreated.
Hypothyroidism (>5%) Hypothyroidism is an endocrine condition just as hyperthyroidism is, and it causes somewhat opposite symptoms. Due to not producing enough thyroid hormones, it often causes fatigue, depression, hair loss, weight gain, and a frequent feeling of being cold. It’s often comorbid with other autoimmune disabilities, e.g. vitiligo, chronic autoimmune gastritis, and rheumatoid arthritis. Extreme hypothyroidism can also be potentially fatal because of a condition known as Myxedema coma (or “crisis”), which is also rare.
Deafblindness (about 0.2-2%) Being DeafBlind is often considered to be an extremely rare disability, but that’s not really the case. DeafBlindness on its own isn’t a diagnosis - it can be caused by a wide range of things, with CHARGE syndrome (congenital), Usher syndrome (born deaf, becomes blind later in life), congenital rubella, and age-related deafness and blindness being some of the most common reasons. DeafBlindness is a wide spectrum, the vast majority of DeafBlind people aren’t fully blind and deaf, and they can use various ways of communication. Some of these could be sign language (tactile or not), protactile, the deafblind manual, oral speech (aided by hearing aids or not), the Lorm alphabet, and more. You can learn more about assistive devices here! Despite what various media like to tell you, being DeafBlind isn’t a death sentence, and the DeafBlind community and culture are alive and thriving - especially since the start of the protactile movement. We have a DeafBlindness tag that you can look through!
It’s probably worth mentioning that we have received little to no asks in general for almost all the disabilities above, and it’s certainly not due to what mods answer for - majority of our inbox is amputee-related, and we haven’t had mods that answer those for somewhere around four years now. Our best guess is that writers don’t realize how many options they have and just end up going for the same things over and over.
Only representing “cool” disabilities that are “not too much while having a particular look/aura/drama associated” isn’t what you should aim for. Disabled people just exist, and all of us deserve to be represented, including those whose disabilities aren’t your typical “cool design” or “character inspo”. Sometimes we are just regular people, with disabilities that are “boring” or “too much”, and don’t make for useful plot points.
mod Sasza (with huge thank yous to mod Sparrow, Rot, and Virus for their contributions with research and data!)