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

Parents with disabled children are used to being strong advocates, and Chicago mom Amanda Griffith-Atkins is no different. Asher is a 12-year-old boy with a penchant for Elmo, a love of splash pads, and Prader-Willi syndrome. 

She knows how painful it can be when people speak without compassion, but she was happily surprised by a moment any parent with multiple children will understand: one brother airing frustrations about another. Here, though, the conversation took a turn. While Griffith-Atkins was driving with her son and his friend, she heard the complaint — and then heard the friend says, “He has a disability. He can’t always help it.” She smiled. “My heart sped up with joy. It was so wonderful to hear a child confidently use the word disabled and defend someone with a disability.”

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.

DISABILITY PRIDE

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 a community education coordinator, 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.”

CHOOSING AN IDENTIFIER

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. In the Down syndrome community, for example, people overwhelming prefer to place personal identifiers before disability, while autistic people prefer identity-first language. Proponents of the second assert pride in their diagnosis, maintaining that there’s no shame in this piece of a person’s identity and it shouldn’t take a backseat. 

Griffith-Atkins understands the decision. “Disabled is not a bad word. We don’t need to use euphemisms when describing a disability.”

One euphemism that many in the disability community would like to see end? Special. The term still headlines most educational programs for disabled children. “This seems outdated because the disability community has made it clear that “special needs” is not preferred, so why would we perpetuate that language in the school system?” says Griffith-Atkins. “We’re literally teaching our children the wrong words.”

SHIFTING LANGUAGE AS A SOCIETAL SIGN

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.

“My heart sped up with joy. It was so wonderful to hear a child confidently use the word disabled and defend someone with a disability.”

It’s a shift some have found challenging to make. Many believe an aversion to identity-first language is rooted in ableism, the discriminatory belief that those without disabilities are superior to those with them. Griffith-Atkins encourages people who notice themselves avoiding the word “disabled” to examine why that might be. “What were they taught about using the word disabled? What words were used to describe disability when they were growing up? This gives them a chance to examine their own ableism and battle against it.”

LANGUAGE AS A HELP OR HINDRANCE

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. 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.”

THE FUTURE OF DISABILITY LANGUAGE

People don’t always get it right, though, and Griffith-Atkins has faced situations where she’s had to “retract her mama bear claws” and compassionately educate. When people aren’t sure about what language to use, the last thing she wants is for them to feel intimidated. “Just like with anything, it’s OK to say, ‘I’m not exactly sure how to say this.’ Or to just ask, ‘What language is best to use?’” she explains. “Don’t let your lack of confidence stop you from starting a conversation. It’s OK to enter a conversation curious and humble.”

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, Griffith-Atkins says the first step is to become comfortable with disability themselves. The next ones? Do some research, challenge your biases and ableism, and learn the correct language. “Being intentional about the words we use surrounding disability is a way to show respect for people,” she says. “By using euphemisms, we’re indirectly saying we feel uncomfortable talking about disability, which creates more stigma around a population that is already incredibly stigmatized.”

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