Why Do You Write What You Write?

why do you write what you write?

[Text ID: Yours, yours. I was painted for you.]

— Donna Tartt, from “The goldfinch.”

I thought I needed a new laptop but nope, youtube is slowing down your PC if you have adblock on on any open tab...

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!)

                        I kneel into a dream where I                 am good & loved. I am                        good. I am loved. My hands have made some good mistakes. They can always                                                                                make better ones. 

Natalie Wee, “Least of All,” Our Bodies & Other Fine Machines (Amazon / Goodreads)