Shayla Maas is disabled. No, she doesn’t mind if you call her that.
“I am actually disabled. I have multiple disability conditions, including Ehlers-Danlos syndrome, so it’s OK,” said Maas, who hosts the podcast “Tips and Tricks on How to Be Sick.” “I am equally fine with you calling me ‘person with a disability,’ but don’t be afraid to say the word ’disabled.”
In fact, Maas said it only gets weird when people dance around the word “disabled” with euphemisms like “handicapable” or “differently abled.” As she put it, “If someone feels like labeling me as ‘disabled’ makes me less of a person in some way, that’s really saying a lot about them, isn’t it?”
The way Maas chooses to identify herself as a disabled woman despite other people’s discomfort with the word highlights an interesting cultural divide: While more and more disabled people are embracing the word “disability” and urging others to do the same with viral social media campaigns like #SayTheWord, nondisabled people are slow to catch on.
That’s in part because schools, medical professionals and human resources trainings have long advocated for “person-first language,” in which you identify the person before their disability, such as “student with autism or person with cerebral palsy). Person-first language is meant to emphasize that the person isn’t defined by their disability.
But as actually disabled people will you, their disabilities are a vital part of who they are. That’s why many prefer “identity-first language,” in which the disability is put front and center in the terms we use. Examples include terms like “disabled people” or “Deaf person” rather than “person with a disability.”
“I use identity-first language because disability is inextricably linked to who I am.”
By leading with the disability rather than tacking it onto the end, you’re affirming and validating the person and their disability.
“I use identity-first language because disability is inextricably linked to who I am,” said Emily Ladau, a disabled writer from Long Island, New York. “Disability is part of what makes me me, and you shouldn’t have to go out of your way to emphasize that I’m a person first in order be reminded of my humanity.”
That said, there are some obvious common-sense exceptions. “I absolutely would not be OK with anyone calling me a ‘Larsen syndrome woman’ or a ‘wheelchair person,’” Ladau said. “I’m a woman who has Larsen syndrome. I’m a wheelchair user. I’m not a diagnosis or a piece of mobility equipment. But I am disabled.”
Where Person-First Language Comes From
Person-first language was born out of empathy. In the 1980s, health advocates and people with disabilities championed terminology that put the person before their condition or disability. After years of enduring so-called “neutral,” clinical terms like “mental defective” or “afflicted,” person-first language was a way to reclaim humanity and personhood, according to Lydia X. Z. Brown, a disability justice community organizer and lawyer.
“Person-first language is still widely used by people with intellectual disabilities and many other communities of people with disabilities,” Brown said.
Today, the loudest proponents of person-first language are non-disabled people, including parents of disabled children, teachers and medical practitioners who may have been taught to “treat the patient, not the disease.”
“It’s a problem because they frequently shout over and dismiss actual disabled people who prefer identity-first language by insisting that the only respectful language is person-first language,” Brown said. “That’s inaccurate. Sometimes it is respectful to use person-first language, and sometimes it is respectful to use identity-first language. Neither are innately disrespectful.”
Today, many disabled people — particularly the Deaf and autistic communities — prefer identity-first language and have reclaimed what were once considered to be euphemisms like “crip,” similar to how the LGBTQ+ community reclaimed the word ‘queer.’”
“For a lot of autistic people, using identity-first language is a way to destigmatize autism,” according to Zoe Gross, the director of operations at the Autistic Self Advocacy Network. (So, “an autistic child” instead of “a child with autism.”) “I don’t call myself a person with Jewishness. I just say that I am Jewish. Being autistic is the same way ― it is a part of who I am. It’s not separable from me, and it isn’t bad or scary.”
The conversation could extend to mental illness, too. For example, would you refer to someone with a bipolar diagnosis as a “bipolar person” or a “person with bipolar disorder”?
Mainstream mental health advocates and health care professionals tend to prefer person-first language. They argue that it prevents people from being identified with — or identifying themselves with — their illness. Additionally, most guidance for discussing mental health or writing about it in the media still insists on using this type of phrasing.
But ultimately, it’s different for every person, said Audrey Good, the digital content manager at the International Bipolar Foundation.
“Personally, I interchangeably use person-first and identity-first language,” she said. “I’ve said ‘I am bipolar’ many times in conversation and have never expected this phrase to convey bipolar as being my identity. I say ‘I am bipolar’ no differently than I would say ‘I am sick’ or ‘I am happy.’”
“Bipolar disorder is one piece of the puzzle that I am,” she added, “but I cannot definitely draw a line and determine where the illness ends and where I begin.”
How To Find Out What Someone Prefers
It’s important to recognize that the disability community is not a monolith, and a person might have a preference that differs from other folks in their community. If you’re wondering what’s the best way to identify friends, co-workers or others, all it takes is a willingness to follow their lead.
First, notice how people refer to themselves when they’re talking in a group setting. When in doubt, call someone by their name ― or simply ask how they would like to be addressed in a tactful, non-awkward way, Ladau said.
“The first time you engage with a disabled person, don’t just blurt out something like, ‘What do people like you want to be called?’ or ‘What should I call you?’” she said. “If it comes up naturally in conversation and you’re unsure, just say, ‘Do you prefer to be called ‘disabled,’ ‘person with a disability’ or something else?’”
Whatever you do, “please don’t jump in and correct someone’s language preferences,” she said.
Stay clear of cutesy euphemisms like “handicapable” or “differently-abled.” Nondisabled people have taken to the terms in recent years, but they’re patronizing and tend to reinforce stereotypes about disabilities, said Amy Kavanagh, a visually impaired activist.
“Disability is not a bad word. I was born visually impaired and was made to feel like my disability was shameful for most of my adult life,” Kavanagh said. “These kind of euphemisms made me feel like my disability was too difficult for nondisabled people to manage — that I had to minimize it and hide it for fear of causing discomfort by reminding people of my needs.”
The euphemisms don’t just hint at hint at erasure, the practice of collective indifference that renders certain people and groups invisible. They’re also really awkward to say.
“I can’t hear properly, but no amount of condescending language is going to change that,” said Meg Szydlik, a student at Northwestern University who is disabled. “I’m also not Daredevil, and I didn’t gain superpowers from my disability, which is always what ‘handicapable’ makes me think of.”
Lastly, don’t assume this is simply a matter of semantics and disregard someone’s preference. You might have been taught that certain phrasing was more respectful, but if disabled people tell you they prefer identity-first language, listen to them.
“It’s not the end of the world if someone doesn’t use the ‘right’ language because they forgot or because they don’t know,” Brown said. “But if you have the ability to be conscious of your language and change it, it hurts no one to make the effort.”
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