The tug and pull of people-first vs. diagnosis-first language and why it matters
BY LINDSAY SMITH | First Printed in the September/October 2021 Issue
Ivy is a 3-year-old girl with bright blue eyes and a love of horseback riding. She also has Down syndrome. As soon as her mother, Lindsay Filcik, received her daughter’s diagnosis, she began to take note of the language people were using around her. “Often you hear Downs child,
Downs baby, and my first thought was that I don’t like the way that sounds, because it’s putting such an emphasis on the fact that she has Down syndrome.” She began to consider what many parents with disabled children consider: the power of the language she uses — and that other people use — about her young daughter.
The words we choose matter — and they matter even more when we’re talking about a historically and systemically disenfranchised group of people. For decades, language around disability has been shifting. It has moved from terms that are now firmly considered derogatory and offensive, such as the r-word, to words that elicit cringes but remain, like “special needs,” to the now almost-universally preferred “disabled” and diagnosis-specific identifiers. This language isn’t static, just as the experience of disabled people isn’t static, but one thing is clear at the moment: self-identification is the priority.
Across the board, language choices are about respect — something that’s long been missing in society’s treatment of disabled people. Miranda Grunwell, who has a learning disability in basic reading and written expression and works as community education coordinator at Disability Network Southwest Michigan, learned early on that words around disability can either elicit dignity or shame. “In middle school, I got picked on a lot, and it wasn’t that people tripped me or pushed me in the hallway. It was the words they used … stupid, dumb, the r-word,” she shares.
Growing up, she wasn’t the advocate she is now — not until she went to a leadership camp for disabled high school students. It was there that she learned about disability pride. A presenter shared that it was OK to be a person with a disability; it was an identity, but not her entire self. “For me, that was a game changer.”
Still, there is substantial debate when it comes to formatting these identifiers. Robin Queen, a linguistics professor at the University of Michigan, explains the phenomenon. “There was a strong push to use person-first language, and then recently people have pushed back against that.” So what comes first: the person or the disability? Should we be saying “a person with a disability” or “a disabled person”? A person with autism or an autistic person?
As with much in life, it depends.
Proponents of person-first identifiers believe leading with personhood centers one around that identity, rather than the disability. Advocates for identity-first language assert that there’s no shame in a disability, and therefore it should sit at the front like most other adjectives would.
You’ll be hard pressed to find broad consensus on the issue, but there are trends that weave their way through different disabled communities. When Filcik, who grew up in Troy but now lives in Grand Rapids, jumped into the disability world, she jumped into the Down syndrome community — a space where people overwhelming prefer to place personal identifiers before disability, what’s called person-first language. Most people with Down syndrome prefer to be referred to as such, placing primary emphasize on the person, rather than their diagnosis. Still, Filcik understands her instinct isn’t the only way. Autistic people, for example, mostly prefer to use identify-first language, as do many people with physical disabilities.
This shifting language, especially the current lack of consensus, says Queen, may be a symptom of a society working to grapple with a deeper-rooted problem: a hierarchical social system that frequently places disabled people below non-disabled people. “The change tells us that the underlying social context hasn’t shifted for people.” Basically, the pendulum is swinging because society hasn’t settled into a path that doesn’t exclude or degrade disabled people. Language can’t resolve itself until the social questions connected to it are resolved.
“Words can hurt, or they can help.”
It’s a shift some have found challenging to make. Filcik explains that often an aversion to identity-first language is rooted in ableism, the discriminatory belief that those without disabilities are superior to those with them. “It’s all of us who are uncomfortable with disability (who reject identity-first language). We want to put what we feel is the best spin on it, whereas the community says they’re taking back the term disabled and are proud.”
While she still prefers person-first language for Ivy, as many in the Down syndrome community do, she’s been listening and learning. “It’s really been about dismantling the ableism I’ve learned,” she shares.
Language around disability isn’t just about preference, sometimes it can have serious consequences. In the medical world, it can either be a tool for deeper understanding or a wedge. India Marable, a physical therapist at the Children’s Hospital of Michigan Specialty Center in Detroit, works frequently with disabled children and has seen more inclusive, collaborative communication growing within her team. She says leaning on empowering language isn’t just about respect, it’s also about moving patients toward their goals. When you “switch to more empowering communication, you tell patients about what they can do, though they might need some adaptations.” She knows there’s varying thoughts on what the right language is, but her goal is to remain focused on helping her patients thrive — and self-identification is part of that. “The most important thing is patient-first,” she says. “Whatever makes that patient comfortable, trust you, want to be engaged with you, more than any other philosophy, whatever that person wants is most important.”
Marable’s thoughts reverberate around the disability community. “Nothing about us, without us,” Grunwell says, echoing a popular phrase in the disability advocacy community. When it comes to identifiers, this means disabled people need to be part of the conversation. She says language serves as a glimpse into how someone is likely to treat disabled people, including herself. “I can have a conversation with a person, and based off the language they’re using, I can pretty quickly determine if they’re an ally or not.”
Denise Stile Marshall, CEO at Council of Parent Attorneys and Advocates (COPAA), also believes that choosing the right language can move the needle forward when it comes to equity and respect. Marshall and her team work to ensure that disabled students are not denied their educational rights and have access to high quality educational services. When it comes to identifiers, she says that providing space for self-identification “definitely matters, because it’s valuing identity … and demonstrating equity and respect. Having other people view disabled people as having that right or ability is a first step toward equal access and equal opportunity.”
Meanwhile, Filcik is left wondering why language around disability even needs such a strong presence in everyday interactions. While knowing what words are respectful and appropriate is critical, she notes the many situations where disability language is unnecessary. “If you approach a disabled person as a person, you just say hi and strike up a conversation. Language doesn’t necessarily have to come into play in a lot of situations. They’re just humans.”
Queen thinks there’s hope to be found. “For the most part, the default state for humans is to converge. We want to be able to understand one another and communicate. Ultimately, we want to be able to converse with one another and not make someone feel like an outsider.” Across the board, the consensus is that the best way to do that is to listen, learn and allow for self-identification.
For parents without disabled children, Filcik says the most important thing is talking about disability ahead of time. “Disability is a huge part of humanity. It’s not if you and your child are going to encounter disabled people, it’s when, so be prepared.” Reading books with disabled characters, having these conversations, noting the presence of disability in advertisements — all of these things can help kids when it comes to kinder, more thoughtful interactions.
And yes, choosing the right language. As Marshall has heard families tell her again and again, “Words can hurt, or they can help.”