Language is a tool. It can make our worlds bigger or make them smaller. It can be used to create connection or to cause harm. It can affirm or it can disparage.
When it comes to how we describe marginalized aspects of ourselves or others—things that are perceived as “not normal” by the mainstream—language matters a whole lot, because how we talk or write about ourselves and each other can either affirm the value of diversity and difference, or demean people who are different from the idealized norm.
“We are people, not diagnoses”: Using language to affirm agency and humanity
In the 1980s, the concept of “person-first language” developed among disability advocacy groups, although it wasn’t named right away using this term. For example, in 1983, the national People With AIDS movement was founded, holding at its center the radical “Denver Principles,” a document that opened with this phrase:
We condemn attempts to label us as “victims,” a term that implies defeat, and we are only occasionally “patients,” a term that implies passivity, helplessness, and dependence upon the care of others. We are “People With AIDS.”
The movement to use language in a way that allowed folks with disabilities and/or particular diagnoses to reclaim their agency, autonomy, and personhood in the face of stigma and dehumanization was—and is—incredibly powerful. It’s a big deal to affirm “I’m not a schizophrenic, I’m a person with schizophrenia,” or “I’m not confined to a wheelchair, I’m a person who uses a wheelchair” in a society that often only sees the condition, not the person behind it.
If folks had stuck with the worthy goal of focusing on the agency, personhood, and authority of the people being referred to, that would have been great. But that’s not what happened.
Person-first language: Putting words first, not people first
Over the last few decades, “person-first language” has become a linguistic rule, promoted as a carved-in-stone law of the land by those in professional spheres such as health care, social services, education, and government.
The rule is to put the word person first, before the disability or condition, in order to emphasize that those being referred to are people first, not just diagnoses or disabilities. For example, “people with disabilities,” instead of “disabled people.”
This is a perfectly lovely rule of thumb: When in doubt, put the word person first, particularly when referring to people with disabilities. But identity is complex—way too complex for a rule like this to work without any exceptions.
A few years ago I received an email from someone who scolded me for writing “transgender people” in a recent piece. “The appropriate term is ‘people who identify as transgender,’” she informed me. I was stunned. Why in the name of all that’s holy was someone who clearly wasn’t trans and likely didn’t even know any trans people writing to me—a trans person—and telling me I was using the wrong language to refer to myself and my community?
Because #personfirstlanguage. This person had internalized the rule that you had to put the word person first, and she was on a crusade to make sure everyone else followed this rule, too.
What I didn’t know at the time was that my disabled friends experience these sorts of paternalistic and frankly dehumanizing comments and “corrections” from presumably well-meaning people every day. “You’re not a disabled person, you’re a person with a disability.” “You’re not autistic, you’re a person with autism spectrum disorder.”
When a language rule—which was created specifically to respect people’s agency and personhood—gets in the way of actually respecting the person in front of you, it’s time to ditch the rule.
Not everyone puts the word person first
Let’s get one thing clear: Everyone has the right to define themselves in whatever way feels best and most authentic to them. If someone wants to call herself a cripple, that’s her right, and it’s up to me to respect her choice—as well as finding out whether she wants me to refer to her that way too or not.
The truth is, not everyone puts the word person first when they refer to themselves. People generally talk about themselves as Black, not as people who are Black; as women, not as people who are female; as Muslim, not as people who practice Islam; as bisexual, not as people who identify as bisexual; as short, not as people of short stature.
Similarly, many people refer to themselves as disabled, not as people with disabilities; as blind, not as people who are blind; or as Deaf, not as people with deafness.
Complicating things even further is the fact that people with a certain trait in common often have completely different experiences of it—for example, some people identify as Deaf, are part of Deaf community, and don’t see deafness as an inherently negative thing, while other people experience being deaf or hard of hearing as something to be overcome or cured. The same diversity of experience is why the phrase “people who identify as transgender” is a terrible idea: not all of us identify as trans. Some of us do, but many of us just identify as women or men and consider our gender journey to simply be a none-of-your-business part of our medical file.
Some of the most outspoken critics of the person-first language rule are folks within the autism community. As Lydia X. Z. Brown has explained in a two-part piece:
In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity. … I am Autistic. I am also East Asian, Chinese, U.S. American, a person of faith, leftist, and genderqueer. These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person.
Many people have pointed out that the practice of using language to separate a person from a trait of theirs implies that the trait is inherently negative. Although some people might feel that their disabilities are negative, many others don’t feel that way. In a piece titled “Why Person-First Language Doesn’t Always Put the Person First,” Emily Ladau explains:
Consider how person-first language intentionally separates a person from their disability. Although this supposedly acknowledges personhood, it also implies that “disability” or “disabled” are negative, derogatory words. In other words, disability is something society believes a person should try to dissociate from if they want to be considered a whole person. This makes it seem as though being disabled is something of which you should be ashamed. Person-first language essentially buys into the stigma it claims to be fighting.
Person-centered language: Value people more than language rules
Hopefully we can all agree that you generally shouldn’t use a disability, a condition, a diagnosis, or even an identity as the only way to describe a person. Terms like “the handicapped,” “an autistic,” “a geriatric,” “transgenders,” and “the blacks” dehumanize people by using an aspect of themselves as a stand-in for their personhood.
Hopefully we can also all agree that it’s best to avoid using stigmatizing or negative language to refer to aspects of a person. Terms like “suffering from autism,” “AIDS victim,” “bed-ridden,” “mentally ill,” and “hearing impaired” victimize people by painting them as suffering or inherently unwell when that may not be the case.
These are the things that person-first language set out to accomplish: don’t demean, dehumanize, or stigmatize people by way of the language you use to describe them.
It’s time to go back to that worthy goal, and not let a language tip that should never have become a hard-and-fast rule in the first place get in the way of treating each other with respect and care.
In the words of Emily Ladau:
Ultimately, the key is to ask, whenever possible, how a person chooses to identify, rather than making assumptions or imposing your own beliefs. Each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect. … Being who you choose to be—who you are—is something no language rule should ever take away.
Let’s practice person-centered language instead of person-first language, and remind each other that the point is to put the actual person first—to remember that all people are people and should be treated as the first and foremost experts on themselves.
Addendum: But What Term Should I Use??
A lot of folks have responded to this piece by saying something along the lines of: “It’s all well and good to respect an individual person’s language choices, but how can I refer generally to a group of people who don’t all use the same words?”
The answer is that there’s no simple or quick fix. Instead of seeking the perfect phrase that will avoid offense, we have to be willing to explore what will create the most respect and care in any particular situation. Here are some best practices:
- Be clear: Sometimes we use broad language when more specific words would be better, and vice versa. For example, if your context is wheelchair-accessible ramps, you can say “people with limited mobility” rather than “disabled people.”
- Be creative: You don’t need to find a single word or term. You can say things like “autistic people and people with autism” and explain why you are doing so.
- Be humble: If you feel reactive, defensive, or anxious, explore your feelings and consider how you can work to fully respect folks who use different language than you do.
- Be respectful: Remember that the point is to care about the people you are referring to and honor their personhood and agency.
- Be curious: Consult different sources, particularly groups and organizations led by the folks you’re referring to, to see what language they use and why.
There is no one “correct” answer. The invitation of person-centered language is to value a caring and complicated approach rather than searching for a pat solution.
Want to learn more about how to fight ableism through your language choices? Check out this fabulous FAQ on ableist language and why it matters by Rachel Cohen-Rottenberg and this great round-up of ableist language pitfalls and alternatives and the accompanying explanation of how ableist language fits into the larger system of ableism from Lydia X. Z. Brown. And don’t miss this other great piece by Lydia X. Z. Brown: “Ableism Is Not ‘Bad Words.’ It’s Violence.”
*Note: I did not invent the term “person-centered language”; it was introduced to me a number of years ago by an autistic person who provided invaluable feedback on some inclusive language guidelines I had written.
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