As an individual with a rare chronic disease, I’ve centered my career in writing stories about disabled characters. Disabled people are everywhere, and they deserve to have their stories told—and not just those about their conditions.
It’s not enough to make a story inclusive. Stories featuring disabled characters need to be just as colorful and immersing as books featuring able-bodied main characters. But how can authors effectively tell these stories without employing harmful stereotypes?
Terminology and Intent Means Everything
Before diving into the details, it’s essential to consider the terminology you use when writing about disability, including the difference between “disabled character” and “character with a disability.”
The latter term focuses on referring to the character as a person first and their disability second, so the disability itself isn’t what defines the character. However, “disabled” isn’t a dirty word, and avoiding the phrase “disabled character” implies that it is.
It is understandable to want to avoid labels. However, a person can choose to have more than one label. A person can be a wife, but they can also be a CEO, a reader, and a volunteer. Disability is a singular factor of a character’s experience, but it shouldn’t be seen as the primary defining trait.
Overall, these two terms should be used interchangeably. If you are an able-bodied person who errs on the side of caution, “character with a disability” is typically a fine choice.
Yet it is important not to dictate to disabled writers how they may refer to their characters and themselves. Disability isn’t just a diagnosis; for many, it is an identity, and policing how people identify and see themselves is both harmful and disrespectful. As with all writing, the words you use matter.
Why Writing Disabled Characters Is Important
Disability is a scale, and it looks different for everyone. To categorize someone only as “disabled” or “non-disabled” leaves no room for those who exist within gray areas. A person who has major clinical depression experiences disability differently than someone who is quadriplegic. But to refer to someone as being more or less able-bodied than someone else is unhelpful, as disabilities can look different on different people. Many invisible illnesses allow a person to appear able-bodied to the naked eye yet can have a significant impact on their lives.
Disabled people are people, and they have lives that are similar to able-bodied individuals. The key differences usually come down to issues of accessibility and prejudice. When writing about disabled characters, disability should not be the focus of the story. That is, of course, unless you are specifically writing a disability story about the main character’s illness, but in this chronically ill author’s opinion, books like these have been done to death. Disabled people don’t want to read about themselves being sick. We want to read about disabled people being heroes, interacting with their world, and having extraordinary experiences.
In much of modern media, disability is portrayed as a negative experience. Disabled people die at the end, they suffer through much of the story, and a huge part of their character is based on nothing more than their diagnosis. But disability doesn’t inherently have to be negative. It can be a neutral trait of the individual’s experience, something they live with rather than struggle against.
The point of writing disabled characters is to normalize them. Disabled people are not “others.” They exist—making up as much as 15 percent of the population, according to the World Bank Group, a global partnership of institutions that works to create sustainable environments for marginalized communities. Disabled people lead interesting lives, and they have thoughts and feelings just as much as the able-bodied population does. And writing—and reading—about these characters gives disabled people representation, as well as helps able-bodied people better understand what the disabled experience is like.
As I’ve told friends, my illness is just “a thing”—something that is a part of my life that I handle just as I would any other piece. It’s not “a deal”—something that has such a negative effect on my life that it becomes the focus of my existence.
How to Write Disabled Characters
Before attempting to begin your novel, research is key. It’s not enough to understand the medical know-how of a person’s diagnosis—an author must immerse themselves in learning about what life with that diagnosis is like.
To start, contact and gather information from organizations that advocate for people with disabilities. For example, the Immune Deficiency Foundation website would be helpful for learning more about immune-related disabilities. From there, many organizations have information about the disease itself, as well as educational materials and information about living with certain disorders.
For me, one of the most helpful ways to research various disabilities is by spending time in both virtual and physical spaces where people with that particular condition gather. There’s only so much you can learn from a medical article online, and these formal documents often barely scratch the surface of the disabled experience. Instead, search for a meetup, convention, or online space for disabled people where you can participate as an observer. The knowledge you will receive will be golden. Many of these meet-up events can be found on the aforementioned websites.
While listening—and it is important that you listen, first and foremost—to these individuals talk with one another about their lives and experiences, you will gain a more accurate picture of their diagnosis than you ever could by listening to a physician speak on the subject. One-on-one interviews are crucial too. It’s important to get time to talk to disabled people about their illnesses, so you can ask questions relating to your characters and your book. Many disabled people are comfortable speaking about their illness and are happy to answer respectful questions about it, such as the challenges they face while being disabled or how being disabled has changed their lives unexpectedly. Not all disabled experiences are detrimental—in my experience, I’ve found many aspects of my disability have affected my life positively, such as helping me to foster a more inclusive and patient mindset for myself and others.
Avoid implying that disabled people are inspirational, stronger than others, or brave for facing life with a condition. Disabled people can be inspirational and strong, but it can be detrimental for disabled people to hear others say that they wouldn’t be able to handle living with a disability. Also, avoid implying that a disabled person must struggle with a certain activity—many disabled people can do most of the things an able-bodied person can, as long as they are provided with the proper accommodations.
Group meetups can also be wonderful places to find sensitivity readers—readers who identify with the condition of your character and can point out any misconceptions in your novel during editing. At the end of the event or after a one-on-one interview, ask if that individual would be willing to be a sensitive reader for you after you’ve finished writing, and offer to pay them for their time and knowledge.
Avoid hiring sensitivity readers who are caregivers of the disabled person and don’t live with the diagnosis themselves. It’s critical to understand that if you don’t have that particular diagnosis, you will never know what it is like to live with that disability. Conversely, understand that disability has some universal experiences. Many disabled people struggle with accessibility in public spaces or experience discrimination as a result of being disabled. Most have experienced struggling to attain medical care or getting doctors to take their symptoms seriously.
We are all human. We all have feelings and emotions, and despite the differences, our bodies may present, the idea of humanity grounds us all. Above all, when writing disabled characters, keep in mind that they are, above all else, characters—ones you may have more in common with than you think.
Resources authors may use to begin research:
U.S. Access Board: A list of disability research resources, including statistics on disability, primarily in the United States.
Charity Navigator: A list of all nonprofit organizations where authors can research the credibility and funding of a disability advocacy organization, as well as locate charities focused on individual conditions.
We Need Diverse Books: A website providing information and education on a variety of diverse books, mostly centered around children’s fiction, some on disability.