This Is How To Talk About Disability, According To Disabled People

by JR Thorpe
Charlie Crowhurst/Getty Images Sport/Getty Images

Being part of the disabled community in the U.S. under Donald Trump is hardly a picnic. Between being openly mocked on the campaign trail, worries about rights rollbacks, and serious attempts to cut disability benefits, it's a hard time full of big questions. When the problems facing the disabled community are so material, it may seem inconsequential to have a conversation about words, but a debate about how we talk about disabilities, and how disabled people talk about themselves, has been going on for decades, and it's especially important now, with disability rights at risk, to make sure we're all on the same page. A growing number of people in the disabled community are using identity-first language, and this is how to figure out if you should be using it, too.

The basic argument is between person-first language, which is a somewhat older mode of talking about disability, and identity-first language, which is newer. The difference is: should someone with a disability be called "a disabled person", or "a person with a disability?" You may think this is just semantic quibbling, but it's got big implications and can spark vigorous debate and divisions. Words, as any person who's ever been harassed, bullied, or stuck with a hurtful label can attest, have power, not only personally but politically. And understanding the debate and the people on either side can give a lot of insight into what it means to be disabled — a point of view that, in today's America, needs to be given more visibility.

Person-First Language Versus Identity-First Language

To call somebody "a disabled person" — an autistic person, for example — is to use "identity-first" language. It puts the disability first in the phrase. To say that they are, instead, a "person with a disability" — e.g., a person with autism — puts their personhood first, and their disability as just one element that makes up their whole personhood. You're more likely to have heard of (or used) person-first language: According to the National Center on Disability and Journalism, it stems from a shift to rename the "Education for All Handicapped Children Act" in 1990, to "Individuals With Disabilities Education Act." Person-first language is considered more PC in North America, and some people still find this terminology preferable. These terms of reference are used in disabled communities all the time, and they reflect bigger ideas about what disability is, how it affects or interacts with your personhood, and how other people see you.

The difference between the perspectives essentially boils down to personhood and disability: is it something that you have, or something that's at the core of your identity? Among autistic people, identity-first language is popular, because they often feel it's such a strong part of who they are, not something that's happened to them. Lydia Brown of the Autistic Self-Advocacy Network, who is autistic, explains in an essay that while she has previously encountered arguments that because we say "person with cancer" rather than "cancerous person," we should do the same for autism, but she argues strenuously against that point:

"Cancer is a disease that ultimately kills if not treated or put into long-term remission. There is absolutely nothing positive, edifying, or meaningful about cancer. Cancer is not a part of a person’s identity or the way in which an individual experiences and understands the world around him or her. It is not all-pervasive. Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive."

But that's not the way all people think of it. The American Psychological Association recommends that professionals use person-first language ("person with disability") in their everyday discourse, because the adoption of person-first language was a conscious movement away from the previous (and seriously offensive) ways of referring to disabled people. It was meant to consciously reaffirm the humanity and personhood of the disabled person, rather than make their disability their defining feature without their consent. The International Federation of Adapted Physical Ability takes a person-first perspective, explaining:

"In person-first language, an intellectual disability is viewed as one aspect of a person. This person may have many other attributes such as being tall or short, being blond or brunette, loves baseball or loves football, loves watching TV or loves reading books, loves pizza or loves hamburgers, etc. Having an intellectual disability is just one of many characteristics that defines a person."

What people think about the issue, interestingly enough, appears to depend on where they stand within the disabled community itself. A research paper published in 2015, which surveyed people in the autistic community in England, looked at how different people viewed different types of language, and found an intriguing divide. While autistic people themselves often expressed a preference for identity-first language, their families often wanted person-first language and rejected identity-first language and terms like "Aspie", for Asperger's. In her essay, Lydia Brown mentions a meeting in which a mother describes "cringing" at the word "autistic" because it had such negative connotations in her childhood, and actively advocating for person-first language.

Why The Language That We Use Matters

The fact that the debate so often centers around intellectual disability isn't accidental. The relationship between a disability and the person who lives with it comes into greater relief when it's a part of their mental outlook and their brain's ability to understand the world. The brain is, for many people, the center of an individual's personhood and identity (though in reality we're an intricate physical being of complicated, interdependent biology rather than just a brain moving around in a vehicle). But the issue also arises across many other disabilities, with the ultimate question being asked: does a disability define you, and if so, is that a bad thing?

For advocates of identity-first language, talking about being a "disabled person" is fundamentally empowering because it acknowledges that their disability is vital to their position in the world and who they are. They often argue that person-first language is based around the idea that disabilities are somehow insulting or problematic, and that separating them away from the self reiterates those issues. "PFL intentionally separates a person from their disability," disability-rights blogger Emily Ladau argues for the website Think Inclusive. "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."

For person-first advocates, though, to be a "person with a disability" encourages the wider world to look beyond the only obvious thing they might be able to see (or perceive, in the case of invisible disabilities), to conceive of the person beyond it. The Center for Disease Control and Prevention uses person-first language in all official communications because they view it as the best way to speak "appropriately and respectfully" of people with disabilities. Though it began as a hopeful attempt to reduce discrimination and change attitudes, there's not much evidence that it's done so. It's seen as the proper way to attempt to make all-encompassing labels more subtle, to give the person with the disability the ability to define themselves, and to broaden the public's understanding of disability.

Both, at their core, are trying to solve the same problem: to give the disabled community respect and self-determination in a society that habitually discriminates against them and perpetuates negative stereotypes. The best thing to do in order to empower the disabled community to define themselves? Ask them how they'd like to be referred to — and advocate with all your might for wider disability-related protections and rights, to make life easier for everybody.