The following information is accumulated from my own experiences, as well as experiences within the disabled community, and the People With Disability Australia (PWDA) Language Guide (2021).
I cringe every time I see writers and Sensitivity Readers use terms like “otherwise abled”, “handicapable”, or “(dis)abled” in their writing. Honestly, it comes off as though they’re trying too hard to be an "ally" among their able-bodied peers, in speaking about a minority they’ve never actually spoken to about preferred terminology. Disabled is not a dirty word!
Person-first or identity-first language?
While both person-first language (“people with disability”) and identity-first language (“disabled people”) are used in Australia, many disabled people use identity-first. This is largely due to the fact that a huge part of the process of diagnosis includes coming to terms with the reality of life with a disability, and many disabled people are proud to own this label in their own lives – myself included. Identity-first language is empowering; it’s defining.
However, if you do notice someone you converse with using person-first language, this is a personal preference and it’s not up to anyone to judge. Let the person be comfortable in how they choose to define themselves.
How to refer to disabilities and disabled characters
Truthfully, your best way to learn the language disabled people – or people from any minority group for that matter – prefer to be associated with, is to go straight to the source. Watch videos, engage with disabled people on social media, kindly speak to someone in your local community whom you have a relationship with (such as at your local clubhouse or church, youth group or workplace). Youtube and Instagram is where I personally stay up to date with changing terminology the most, and oftentimes the discussions within comments are respectful and informative. You can (and I do) follow content creators and advocates who live with disabilities to learn the terms they’re comfortable with, read memoirs and autobiographies, and nonfiction books from “own voices”.
Always keep up to date with diagnostic terminology, including those outdated terms such as Asperger’s Syndrome, Multiple Personality Disorder, or Psychopath (a full post is due on this topic at a later date). These are often discussed in medical journals and magazines, or the Diagnostic and Statistical Manual (the DSM-V is our current version) which is used throughout America and a lot of the English-speaking world as the most up to date diagnostic tool used by psychologists and psychiatrists. Do keep in mind that such a heavy text as the DSM cannot always keep up to date with subtle shifts within society, however it will be informative for those diagnoses I mentioned earlier such as Multiple Personality Disorder (now Dissociative Identity Disorder) or Psychopathy.
For developmental disorders, we are societally making the transition from functioning labels (“high/ low functioning”) to support-/needs-based labels (“high/ low support needs"). This is important because rather than recognising a person’s limitations, we focus on how we can help those struggling to fit into society’s standards. People with these sorts of disorders, in particular ADHD and Autism (or ASD), are commonly and proudly termed “neurodivergent” (ND), as opposed to people who have no such mental barriers who are “neurotypical” (NT). If you see people online calling themselves and their fellow ND peers “neurospicy”, it’s just a fun slang term within the community for being neurodivergent.
Nonfiction books I have read and recommend are:
Chloe Hayden’s Different Not Less is a nonfiction book about Autism Spectrum Disorder and comorbidities (click here for Different Not Less);
Lighter Than my Shadow by Katie May Green is a graphic novel memoir about eating disorders (click here for Lighter Than My Shadow);
The Dark Matter of Mona Starr by Laura Lee Gulledge is a graphic novel exploring depression (click here for Mona Starr).
Fiction novels with fantastic representation (some deal with disabilities and others deal with mental health, but they’re all well worth a read) I have read in the past year and recommend are:
These Still Black Waters by Christina McDonald for mobility aid and grief representation (click here for These Still Black Waters);
You’d Be Home Now by Kathleen Glasgow (really any of Kathleen’s books, actually) for substance addiction (click here for You'd Be Home Now);
Who Could Love You, Astor Price? by Amy Jane Lehan for self-harm, depression, anxiety, and alcohol addiction (click here for Astor Price);
Under the Whispering Door by TJ Klune for anxiety, panic attacks, and an Autistic-coded MC (click here for Under the Whispering Door);
Eleanor Oliphant is Completely Fine by Gail Honeyman for anxiety and alcohol addiction (click here for Eleanor Oliphant).
What is ableism?
Ableism is a term which describes a bias against disabled people, whether conscious or unconscious. This can often be seen plainly in society, for example, a shop insisting they don’t have enough disabled customers to require an elevator or wheelchair lift, which inhibits disabled people from entering the store. In language it can be seen when people use terms such as “deaf and dumb”, or asking a young person “why do you need a cane at your age?”
These all project a certain expectation, not only for disabled people to “look disabled”, but also stereotypes around who can and cannot – by society’s expectations – use a mobility aid. The example with an inaccessible store also furthers stereotypes by profiling what kind of person uses their goods and services, putting disabled people into more of an expectations box. In reality, we know that anyone can be disabled, and not all disabilities are going to be outwardly visible.
How not to refer to your disabled characters
A very basic rule of thumb is simply to never call another human being anything you wouldn’t personally mind being called yourself. While terms including “idiot”, “moron”, and “retard” all have roots in the professional medical field, they are now very outdated and we have more respectful terminology, fitted to the advances we’ve made in medicine these days. As I say time and again, context always matters. Therefore, there will always be contexts in which these terms are absolutely the right word for your writing, depending on things like when your story is set, and who is using those terms. However, as a general rule, we steer away from these words for any disabled characters, purely out of respect for our fellow humans.
The PWDA reminds us that “Expressions such as ‘victim’ or ‘sufferer’ suggest we [disabled people] are unhappy about our lives, or that we wish we were ‘normal’.” This invites pity and often encourages people to talk down to disabled people.
Similarly, wheelchair users are just that, people who use wheelchairs to afford them freedom and mobility in their lives. A person is not “wheelchair bound”, nor are they unlucky to have to use a wheelchair. Rather, they’re often ecstatic to have access to such an aid as a wheelchair which enables them to live a more socially acceptable lifestyle. (On a similar note, someone may be described as being “bed-bound” or “house-bound” as these describe limitations rather than freedoms.) Something else to keep in mind is that “ambulant wheelchair users” – people who rely on a wheelchair but have the ability to stand and move around a limited amount – not only exist, but are common. Not all wheelchair users are completely paralysed.
Disabled people are not and should not be referred to as an “inspiration” to able-bodied people, simply for living. If a wheelchair user is doing their grocery shopping, they’re just living their lives and don’t need or want to be filmed or complemented. This is what’s often known online as “inspiration porn” and it’s humiliating, dehumanising, and condescending for disabled people to occupy this role for an able-bodied person.
Likewise, no one is “brave” or “strong” for living with, caring for, marrying, or parenting someone with a disability. They are being a decent human being and you would likely do no different for someone you love. It can also be humiliating for a disabled person to hear their loved one talked about in such highly regarded terms, when often disabled people already struggle with feeling like a burden on their loved ones.
Writing characters who use physical aids
Basic etiquette for anyone who uses a mobility aid is that it isn’t for anyone else to touch. It’s considered extremely rude for someone to grab or interfere with a wheelchair. Likewise, it’s rude and impairing for someone to take or move a mobility aid without the user’s consent. Think about it: if you rely on an aid, you need that in order to be mobile or participate in whatever activity you’re doing at the time. For someone to move your aid out of your reach then means that you’d have no means to be mobile or participate and are stuck where you are until such time as the aid is returned to you. Partners, family, carers, etc. of characters using an aid should always ask if they mind the aid being set aside for the time being, for instance, around a crowded group table for lunch. Similarly, you wouldn’t interfere with someone's Assistance or Service Dog, who is focused on their job.
Regarding mobility aids, there is a difference between a cane and a walking stick which most people often aren’t aware of until such time as they need to purchase or write about one. A cane is an everyday mobility aid, designed to take a fair amount of weight from the user as they walk. They often have a horizontal or curved handle to allow for ergonomic grip without causing pressure wounds (mine is pictured below on the left). These are used against the side of one’s body, on the opposite side to the injured or impaired leg or foot. A walking stick is often used recreationally, is non-essential, has a rounded or novelty top grip often (as pictured below on the right), and is used for balance rather than weight-bearing. They are held out in front of the body a bit, and in the user’s dominant hand.
On this note, don’t forget to keep track of how many hands your character has available. You wouldn’t write an able-bodied person holding four cups of coffee, would you? Perhaps three – one in each hand and one held against their body by one arm. Logistics will matter to your readers, so make sure you don’t load up someone who has one hand occupied by an aid, who wouldn’t be able to be ambulant for a few steps.
Lastly, remember that aids are necessary to your character, and often quite expensive. A blood glucose device, for example, which uses a finger prick to test may seem like fun for a kid to try out, but their parent or guardian should probably make sure they understand that the lancing device and test strip aren’t for fun, and each individual part of the process is costly, especially for those having to test multiple times a day, with disposable parts. If the intended user runs out before they’re due to get more, this could become life-threatening.
The natural cycle of language
Reclaiming of terminology – such as lesbian communities taking back the term “dyke”, or LGBTQIA+ communities reclaiming “queer” – does happen over time. It is our job, especially as writers, to listen to those oppressed or minority communities as to when it’s appropriate to insert these terms back into our vocabulary.
I had an interesting talk about this topic with a close friend in Denmark when she watched the Aussie Netflix drama Heartbreak High. She was confused why it was okay for the queer non-binary character Darren to refer to themself and their peers as “bitch/ bitches”, but it was an insult coming from someone else. Basically, I explained that it’s not for someone outside a community to decide when it’s time for the community to reclaim a term and use it to empower themselves. As outsiders of any community, all we can do is avoid harmful terms until the minority community has had a chance to heal from the damage these terms have done in the past, and chooses to reclaim these terms themselves.
Terminology cheat sheet for this post
Own voices: representation of a minority community or group, written by a person of the same minority community or group (e.g. a wheelchair user writing a character who uses a wheelchair)
Blood glucose device: a testing device used by someone with diabetes to test the glucose level of their blood; it has several parts to it in order to prick the skin and collect a very small blood sample, then test on a small machine and give a reading
LGBTQIA+: another term for the queer umbrella community; acronym stands for lesbian, gay, bisexual/ biromantic, transgender, queer, intersex, asexual/ aromantic, plus more; sometimes also seen with the incusion of P or 2S, which stand for pansexual/ panromantic/ polyamorous, and two souls, respectively
You can access the full PWDA Language Guide here: https://pwd.org.au/wp-content/uploads/2021/12/PWDA-Language-Guide-v2-2021.pdf
This is incredibly insightful, thank you for sharing!!