“The writers first affinity is not to a loyalty, a tradition, a morality, a religion, but to life itself, and its representation of language.”Jayne Anne Phillips
Throughout my life, I have seldom felt the passion for a cause as much as I feel for respecting and accepting those with disabilities. Recently, I have been strongly engaged in such volunteerism, spending weeks at a summer camp as a volunteer counsler and even joining as a board member to a local non-profit that sponsors the growth and acceptance of those with disabilities. Writing is a way I express myself, so I found it crucial to my story that I include the story of a young boy with a disability so that their stories can be heard as well.
This is a touchy topic because many do not know much about it. How can I respectfully delve deep into the story of one with a disability if I have never experienced life with one? How can I explain the relationships around it when I’ve rarely been a situation with a person with a disability?
As with any topic discussing diversity, just because something is foriegn to us does not mean that it should be avoided. Gaining knowledge and experience now a days is truly easier than ever before. That being said, please do not feel pressured to force a character with a disability into your story if it does not fit. The one thing worse than a lack of diversity in a novel is its forced placement.
Also, heed my warning. I am not an expert in this subject matter, and I am still growing as I am writing my novel. Everything I say in this guide is to be taken with caution. Every piece of writing advice should be taken with caution because what works for me might not work with you. Now, with that out of the way, let’s dive in!
What Constitutes as a Disability?
A disability is a physical or mental condition that limits a person’s movements, senses, or activities.
The realm of disabilities is so vast that one guide couldn’t cover them all. Some are genetic, deriving from a mutation or something going wrong during the prenatal stages of life. Others are congential, or at birth. Some develop after birth, and some are triggered by accidents, war, and other disastors.
It also includes learning delays, developmental delays, mental health struggles that make daily life struggles an issue, and more. Since this topic is so large, I will be focusing on this range I am most accustomed with: physical and intellectual disabilities caused by accidents or at birth.
First: A More In Depth Look in The Types of Disabilities
Physical disability: A physical disability is a physical condition that affects a person’s mobility, physical capacity, stamina, or dexterity. This can include brain or spinal cord injuries, multiple sclerosis, cerebral palsy, respiratory disorders, epilepsy, hearing and visual impairments and more.
Brain or spinal cord injuries: These types of injuries are often the most damaging. The brain and spinal cord are an integral part of many bodily functions like walking, bowel movements, eating, and more. Depending on the level of damage, the effects can vary. Infections, such as meningitis, encephalitis, polio, and epidural abscess often cause these diabilities. Structural disorders, such as brain or spinal cord injury, Bell's palsy, cervical spondylosis, carpal tunnel syndrome, brain or spinal cord tumors, peripheral neuropathy, and Guillain-Barré syndrome also exist. This is somewhere to start: https://www.hopkinsmedicine.org/health/conditions-and-diseases/overview-of-nervous-system-disorders Multiple Sclerosis: Multiple Sclerosis, otherwise refered to as MS, is a disorder of the nervous system caused by the degradation of neurons. MS varies in its effect. Some of those diagnosed aren't affected, while others lose complete loss of function. MS can lead to physical disabilities that can limit the function of the affected person, but representation of it is important. When researching, please refer to reputable sources like this one: https://www.nationalmssociety.org/What-is-MS Cerebral Palsy: "Cerebral palsy (CP) is a group of disorders that affect a person’s ability to move and maintain balance and posture. CP is the most common motor disability in childhood. Cerebral means having to do with the brain. Palsy means weakness or problems with using the muscles. CP is caused by abnormal brain development or damage to the developing brain that affects a person’s ability to control his or her muscles. The symptoms of CP vary from person to person. A person with severe CP might need to use special equipment to be able to walk, or might not be able to walk at all and might need lifelong care. A person with mild CP, on the other hand, might walk a little awkwardly, but might not need any special help. CP does not get worse over time, though the exact symptoms can change over a person’s lifetime" (CDC). Books that represent CP: Out of my Mind by Sharon M. Draper, A Curse so Dark and Lonely by Brigid Kemmemer, Petey by Ben Mikaelson CP is one of the most well known physical and mental disabilities, but it is so comlex and varies so much from person to person that it still must be well-researched. People with CP can still live very fruitful lives, as do many with disabilities. Micah Fowler is a successful actor who stared in Speechless, one of my favorite shows because of how it portrays living with CP. There are four main types of CP. To learn more about them, visit theis site: https://www.cdc.gov/ncbddd/cp/facts.html Respiratory disorders: Respiratory disorders can severly affect someone's ability to sleep, perform intensive activities, and more. There are mild cases like mild levels of asthma. There are also serious issues like acute sleep apnea, which can be remedied by CPAP, but there are also very fatal issues like congenital central hypoventilation syndrome or CCHS. https://www.sleepfoundation.org/sleep-apnea and https://www.sleepfoundation.org/sleep-apnea. Some people also use nebulizers and other respiratory aids. https://www.verywellhealth.com/respiratory-aids-for-home-health-care-2318222 Epilepsy: a neurological disorder marked by sudden recurrent episodes of seizures, loss of consciousness, or convulsions, associated with abnormal electrical activity in the brain. Epilepsy often goes in conjunction with another condition. There are multiple types of seizures. This link will direct you do them: https://www.hopkinsmedicine.org/health/conditions-and-diseases/epilepsy/types-of-seizures Drop seizures, medically referred to as atonic seizures, can cause major head injury. Tehrore, those who suffer from it often wear a helmet to protect their heads. Those with epilepsy most likely have a VNS, which is a magnet that is stimulated in the occurance of a seizure. Not all seizures are emergencies, but each person has their norm. Typically, if a seizure lasts for longer than 5 minutes, one should call the ambulance. https://www.chp.edu/our-services/brain/neurosurgery/epilepsy-surgery/services/vns-implantation Accidents: People develop disabilities from accidents and conflict as well. A prime example is veterns with disabilities who obtain it frrm accidents during warfare. These disabilities qualify for diability beniefits, and are just as much a struggle as the more main stream ones.
An Intellectual Disability : Intellectual disability is a disability characterized by significant limitations in both intellectual functioning and in adaptive behavior, which covers many everyday social and practical skills. This disability originates before the age of 18. This type of diability is typically seen when a child has difficulty learning concepts common for their age, or when they have an IQ under 70. There are some common causes of an intellectual disability. Intellectual disabilities often go in conjunction with other disabilities. Here are some common reasons for them.
Genetic conditions Complications during pregancy Problems during birth Diseases or toxic exposure Read more about them here: https://www.specialolympics.org/about/intellectual-disabilities/what-is-intellectual-disability More common intellectual disabilities: Dyslexia (read Fish in a Tree by Lynda Mullaly Hunt), ADHD. Their effect varys, but these difficulties typically aren't categoriazed as the type of disabilities that recieve benifits, and they are recoverable. Still, their representation is important.
Genetic Conditions: A genetic condition occurs when you inherit an altered (changed) gene from your parents that increases your risk of developing that particular condition. However not all genetic conditions are passed down from your parents, some gene changes occur randomly before you are born (Healthy WA).
Some of the many genetic conditions that can result in a physical or intellectual disability:
Trisomy 21 (Down Syndrome): Down syndrome is a chromosomal condition that is associated with intellectual disability, a characteristic facial appearance, and weak muscle tone (hypotonia) in infancy. All affected individuals experience cognitive delays, but the intellectual disability is usually mild to moderate. https://ghr.nlm.nih.gov/condition/down-syndrome.
Fragile X Syndrome: Fragile X syndrome is a genetic condition that causes a range of developmental problems including learning disabilities and cognitive impairment. Usually, males are more severely affected by this disorder than females. https://ghr.nlm.nih.gov/condition/fragile-x-syndrome.
Angelman Syndrome: Characteristic features of this condition include delayed development, intellectual disability, severe speech impairment, and problems with movement and balance (ataxia) https://ghr.nlm.nih.gov/condition/angelman-syndrome
Muscular Dystrophy: Muscular dystrophies are a group of genetic conditions characterized by progressive muscle weakness and wasting (atrophy). There are multiple types: https://ghr.nlm.nih.gov/search?query=muscular+dystrophy
Dwarfism: A condition causing a persons growth to be impaired. https://rarediseases.info.nih.gov/diseases/1988/dwarfism
Cystic Fibrosis: Cystic fibrosis is a progressive, genetic disease that causes persistent lung infections and limits the ability to breathe over time. https://www.cff.org/What-is-CF/About-Cystic-Fibrosis/
- Book that represents this: 5 feet apart by Rachel Lippincott
Huntington’s: late set: An inherited condition in which nerve cells in the brain break down over time.
Now onto Writing
I’ve given you a ton of information, but how do you process that into writing. There are certain things you need to know when you are writing about an individual with disabilities.
Your Character is More Than Their Disability
Every person has a quirk, a personality, and value. A person’s disability does not define who they are, and they do not deserve to be treated as a “diversity token” with no personality. Even if your character cannot speak or move, their mannerisms, thoughts, and feelings still should show through. How they make others feel should show through. It doesn’t matter who I am working with when I am volunteering, they have distinct positive and negaitve traits. They deserve to be just as developed as your other characters.
Disabilities have levels
Not all disabilities are the same, as is common knowledge, but not all conditions lead to the same disability. The range of effect for Cerebral Palsy is immense. Some people might have difficulties with balance and muscle control with CP but still live a self-suffiecent life. Others with a more extreme condition may require assitance in all stages of life. Just as your other characters have dimersons, so do disabilities.
Disability treatment has drastically changed over the ages.
We write in eras and ages, so it is important to realize that treatment and attitudes towards those with disabilities. Treatment and acceptance for those with disabilities is better than it has ever been, but if you are writing a historical piece, please be accurate to your time period. I mentioned a book above called Petey, which is set in the 1900s. Petey has a disabilitiy, and treatement for those with it is poor. Describe conditions accurtaely and don’t romantize what is not to be romantized. That being said, there are always kind people. so just because your world at that time may be cruel, there will be those who are understanding and empathetic. and we need to showcase those people more in our writing.
Some courtesys to follow
Disclaimer: These courtesy’s are meant for you as the narrator. Obviously different characters may or may not follow these courtesy’s based on their personality and moral code, but it is your obligation as an author to set these standards in your narrative or storytelling writing.
Don’t use the R-word: When describing your character with a disability, never as the author should you use the word “retard”. It is an outdated medical term that has become a slur. The slur is extremely offensive and damaging to other with disabilities. If you as the author use this word to describe your character, then you are reverting back to older times and disempowering those with disabilities. Here’s a link to why you shouldn’t use it: https://probonoaustralia.com.au/news/2018/02/social-media-campaign-looks-end-use-word-retard/ It is also important to note that people unfortunatly use the r-word, so for the sake of documenting the difficult experiences of those with disabilities, I would find it acceptable is a character in your novel said it, but only if you as the author make it a point that it is unacceptable. Our culture needs a change, and media and books contribute greatly to that change. You as the author are at liberty to do as you please, but beware, I will critize you and your writing if you use the r-word as a way to degrade your characters with disabilities.
Use person first language: Person first langauge is when you put the person before you pput a characteristic or disability. Aka “a person with disabilities” not “a disabled person”. As I said before, your characters with disabilities are more than their disability. By taking their disability before their identity as a person, we as authors are insinuating that they come after their disability. This will take up some more words, but the precedent it sets is massive.
Here are some examples of person first language: “A person that is non-verbal”, an “individual with cerebral palsy”, a “person that uses a wheelchair”
Avoid using negative adverbs when describing their disability: This one may be a bit harder because its a habit that we as a society have become used to. Its always better to say disability, than handicap or cripple.
You don’t have to mention the disabilty all the time: Just as with race, you don’t have to mention the character’s disability everytime they come on stage. This one is flexible because of each story’s individual needs. For example, in Of Suns and Spirits, Sebastian has a chronic pain disorder that often dibilitates him. This pain almost always is relevant to the plot because it is a great stress in the family’s lives, but his personality is always mentioned as well. When they start treating him for it, the emphasis on his disability dimissed because it stopped defining what he could and could not do.
Though your characters are not only their disability, it is important to write their story with the understanding that much of what they do will be affected by their disability. Housing and living accomidations, relationships with others around them, how they live their daily lives, their thought processes. This is why I love Out of My Mind by Sharon M. Draper. Melody is a brillient girl with CP, but her disability severly affects what she can do. Despite this, we root for who Melody is on the inside and what she wants. We relate with her heart, not her body, and see her disability as not a character trait. We root for her despite all her hardship.
Stay realisitic: Depending on the disability, there are limitations to what they can do. For example, a person with an extreme physical disability is limited with what physical excersies they can do. Reading stories about those with disabilities that do AMAZING things is wonderful, but it is equally as important to write about the average joe. I love to read the story wonder, where Auggie has a physical deformity. He becomes the top recognized student at his school because of his hard work and compassion. Winning prom king or king, helping a team win a basketball game, those local but impactful stories are stories that need to be told, not just “I climbed mount everest”. Just as you don’t hand things to your characters, you shouldn’t just hand things to your characters with disabilities. They work just as hard to reach their goals, and deserve to be acknowledged as so.
Don’t romanticize: When you are telling somebody’s story, tell it with accuracy. Nothing is more frustrating to see a story with only positives that compeltely ignores the hardships of the people or person it’s representing. No, a lot of things in the world of disability is glorious. There are mean people out there. There are medical hardships. There are the familial difficulties. But humankind persists. There is always hope. It’s important to accurately represent both sides of the story.
Be empathetic: It’s always the story, the personality, and the growth that creates an impactful story. Struggle and hardship are just as much a part of human life as success and joy. Characters will say what characters say, but if your characters is not supposed to be ignorant, let them not be ignorant. Let them reprimind the characters that break such respectful courtey’s, or let the audience know how damaging these things are to individuals with disabilities. When we raise awareness, we raise acceptance.
Understanding those affected
Real people are affected by disabilites, which is why you must be careful when delving into their story. Every character deserved time and research put into them and who they are. Realize that real people are behind your characters, real people who’s perception can be changed or who’s lives can be impacted.
This guide is not the end al be all. It barely touches the surface. The world is full of wonderful people and resources, so I advise you to take upon real life research, meeting people, and understanding their stories as a part of the writing process. Volunteer with kids with disabilities, talk to their parents, make friends at your school, understand them. These people are more than a character, so the best way to translate their stories and experiences to a page is to experience yourself.
Why you should consider writing about those with disabilities
There is not much representation in media about people with disabilities, so there is a misunderstanding of these people in real life as well. Children and society needs to understand them instead of fear them. I know at my school, people tease and make fun of those with disabilities under the guise of friendship. This treatment is damaging to one’s self esteem. The rates of abortion when an expecting parent is much higher when they discover their child will have a disability. The treatment of those with disabilities still needs reform. How can we cause social change in our society so that we can be inclusive, even for those that are different from us.
Books and media raise awareness. Awareness raises understanding. Understanding raises kindness. Kindess raises empathy. When you represent these stories, when you take time to accuralty depict their lives, you are doing a great social service that directly impacts lives.
But still, please do not create a character with a disability just for diversity points. Wrong or miguided intentions show through in your writing, and that causes more damage. Not every book needs a quota for amount of people in a minority. If you decide that you want to represent disability in your writing, do the due research, go out and talk to people, and have good intentions.
So consider it. Maybe it fits, maybe it doesn’t, but I hope this helped.