Language, Language, Language!

Content notice: person-first language, dehumanization, ableism, medical discrimination, academic discrimination

(Or: I did multiple academic database searches for “identity first language AND disability” and got significantly lackluster results)

I am sick to death of scholarly articles that assert that disabled people prefer person-first language without actually saying who they interviewed – where they got that information.

I use identity-first language here specifically because I use identity-first language to refer to myself in basically all conversation and lots of disabled people feel the same about IFL. IFL is not about dehumanizing disabled people. It is about us refusing to be separated from from our identities.

I’m not going to make broad comparisons to other marginalized groups that I don’t belong to and how PFL/IFL gets applied to them, because that only leads down a rabbit hole of “ableism is the last acceptable prejudice,” which is obviously untrue. It is my experience, though, that in LGBTQ+ spaces, very few people prefer PFL and people by and large would find it downright ridiculous if one went around shouting “you can’t call yourself a gay person! You have to call yourself a person who is gay! You’re a person first.” And, to be very clear, LGBTQ+ communities have faced the same onslaught of slurs and dehumanizing language that disabled communities have.1

I see plenty of academic articles and style guides, including fairly recent articles, insisting that providers must use person-first language at all costs. The 10th edition of the AMA Manual of Style states that providers should “put the person first“; the 6th edition of the APA Publication Manual instructs users to avoid language that “implies that a person as a whole is disabled (e.g., disabled person).” Moreover, Gernsbacher, writing in the Journal of Child Psychology and Psychiatry, found that “[person]-first language is used more frequently to refer to children with disabilities than to refer to children without disabilities,” meaning that disabled children are more often referred to as “children with disabilities” whereas non-disabled children are more often referred to as “non-disabled,” “typical,” or (shudder) “normal” children.

This filters down to non-academic sources, where the National Center on Disability and Journalism and the Centers for Disease Control and Prevention both recommend person-first language: the CDC to “[emphasize] the person first not the disability,” and the NCDJ when it is not possible to find out a person or organization’s preferred terminology. The NCDJ at least notes that “some members” (read: most members and self-advocacy organizations) of Deaf and autistic communities prefer identity-first language; the CDC just barrels ahead and says that people should use “person who is deaf” (with a little d, great job, CDC2) and “person with a developmental disability.”

I can’t speak for D/deaf/hard-of-hearing people and communities, but autistic people strongly prefer identity-first language, to the point that one of the foundational text of the autistic self-advocacy movement is “Why I dislike ‘person first’ language” by Jim Sinclair. Autism in Adulthood, a journal that’s about exactly what it says on the tin and has a number of openly autistic people on its editorial board, specifically asks authors submitting manuscripts to it to “either [use] identity-first language, or more neutral terms such as ‘person on the autism spectrum.'”

Moreover, plenty of scholarship specifically about autistic communities has found that identity-first language is strongly preferred. Kapp et al. found that ” [self]-identification as autistic and neurodiversity awareness were associated with viewing autism as a positive identity that needs no cure” and Kenny et al., who studied more that 3000 people in the United Kingdom, found that the ” term ‘autistic’ was endorsed by a large percentage of autistic adults, family members/friends and parents but by considerably fewer professionals; ‘person with autism’ was endorsed by almost half of professionals but by fewer autistic adults and parents.” In other words, it’s not us (or, as Kenny et al. states, our parents and family in many cases), it’s the system.

I would be remiss, though, if I didn’t also include information about identity-first language and autism that wasn’t from scholarly sources. The Autistic Self-Advocacy Network has multiple resources on identity-first language: one for Autism Acceptance Month and one written by the unmatchable Lydia X. Z. Brown. Jeff Gitchel writes “When you say I and my children are People-with-Autism, you are saying that we are stained, damaged, and contaminated by a foreign substance”; Kassiane Sibley says that “[using IFL] has everything to do with the fact that autism is an integral part of who I am.” Jess at Diary of a Mom explains that “[we] ARE neurotypical. We don’t HAVE our neurology. We ARE what it makes us,” in reference to her neurology versus that of her autistic daughter. And Ari Ne’eman, who always has the best quips about autistic culture and anti-autistic ableist rhetoric, comments that “If I’m on a flight and the airline loses my luggage, I don’t arrive without my autism.”

Also, it’s not just solely autistic people. Cara Liebowitz and Emily Landau, both of whom are wheelchair users, write that ” [though] person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see,” and “‘[disability]’ and ‘disabled’ are indicators of culture and identity. Thus, ‘disabled person’ is an accepted term,” respectively. Disabled people do really, really use IFL for ourselves and, in most cases, it’s okay to use IFL for us.3

To go back to Gernsbacher, disabled children often bear the brunt of person-first language, especially developmentally disabled children. (Children with intellectual disabilities also face this labeling, although people with intellectual disabilities tend to prefer PFL – see footnote three below.) This makes sense; children don’t have the same access to self-advocacy and voicing their opinions in the way adults do. It is this double-targeting, though, that makes children especially vulnerable.

Language matters. Denying that people’s choices in how they refer to themselves defines some identities as “acceptable” and some as less so. While academic language lags behind community language in many, many regards, academic and clinical language informs how health care professionals interact with their patients and clients. Instructing providers, flat-out, to only use person-first language, rather than mirroring what their patients use or simply asking sets up patients to have to defend their identities and language.

This fight happens for essentially every marginalized group. Throw a question about disrespecting self-identification into a crowd and you’ll get 100 responses: race, ethnicity, linguistic identity, gender, sexuality, disability, immigrant status. “Acceptable” language gets codified in quantitative forms because it’s easier to standardized choices on forms than ask people to fill in the blank. From a evaluation and data-gathering standpoint, it’s so much easier to ask people to choose one or all that apply from a list. The amount of coding it takes to record 150 open-ended responses (e.g., answers to the question “Tell me your race” with a free-form text box below) versus 150 closed responses (e.g., “What is your race? Pick all that apply.” with the choices of Black, white, Asian, Indigenous/Native American/First Nations, Pacific Islander/Native Hawaiian, Middle Eastern, other (please specify)) in an organized way is ridiculous. In the first question, people can interpret “race” any which way they like – and they will. Depending on your background and community, race can mean many things: skin color, ethnic or national background, language(s) spoken, Indigenous group or tribe, religion, and probably something else I’m missing here. Hopefully, this functions as one illustration as to why academics and professionals prefer standardized language, although I do not mean it to be a defense.

In my research and community work, which is largely qualitative/open-ended, I have found that basically nobody, not even academics and care professionals, likes close-ended, limiting questions and labels. It’s much easier to give someone a list of choices and say “pick one … or two, I guess, if you really have to” but that doesn’t tell you as much about the person as saying “tell me about your race/gender/sexuality/religion/health history/family structure/etc.” I can say on a form that I’m male, gay, white, speak English, am multiply disabled, trans, Christian, and a college student who lives with both parents when I’m not at school, but that only paints part of the picture. Even focusing on one aspect – religion – Christianity is such a large, diverse religion that one could find hundreds, if not thousands of other students who match that same quantitative description that I gave of myself and we’d all have very different stories.4

Academic language filters down into less academic spaces, especially through formal training. If all the style guides, all the research papers, all the textbooks tell health care professionals in training “always use person-first language no matter what,” of course providers are going to go through training learning that identity-first language is bad, no matter if they actually know why they’re being told that. Furthermore, because health professionals and researchers are given so much credence, especially over disabled people, their words are virtually always going to be believed over ours by the general public. That’s not what the doctor says, so that’s not the words I’m going to use for you.

The conversation needs to change in multiple big ways, both at a general conversation level, and an academic/professional level. Besides from the obvious “here are the communities that strongly prefer IFL, here are the communities that prefer PFL,” the best advice is to tell aspiring health professionals to ask and mirror the language their patients use. It’s extremely paternalistic to assume that disabled people can’t possibly have preferences and that people who work with us need to use certain language for our own good.

The one criticism of IFL that people tend to bring up that I feel is worth addressing here is this: if we don’t literally put the person first in our labeling, people who don’t want to think of disabled/autistic/Deaf/etc. people as people have an excuse to dehumanize them. In other words, if we call ourselves “autistic people,” it gives people who hate us an excuse to call us “autistics”5 and say we’re not really people.

That’s not our fault, though. It’s not our fault that people hate us. Language that dehumanizes us or removes the word “person” from who we are is only the fault of people who use it derogatorily, not the people who use language similar to it. If I call myself an autistic person and someone else calls me “an autistic” while talking about how people like me need to be eradicated, I didn’t provoke them.

This connection of “only using PFL will stop people from using dehumanizing language” and the other side of the coin “IFL is dehumanizing because people might use it to dehumanize people” doesn’t serve anyone well. Anyone can use dehumanizing language accidentally, anyone can seek to dehumanize someone else while using the most humanizing, person-first language possible. Policing language that a marginalized group uses about themselves (and requests others use or don’t use about them) isn’t going to stop hate or violence. Victim-blaming around labels and language – telling disabled people that our chosen labels lead to violence against us – won’t help anything.

Respecting language choices – and using the language a group wants you to use for them – makes people feel safer. It gives people autonomy in decision-making because our identities are respected. It’s one fewer thing we have to fight for because language is the basis of respect. Teaching the professionals we work with to respect our language choices begins with research to explore and validate our claims, not dismiss them.


 

 


  1. Although it may be interesting to note here that a similar issue to the PFL/IFL debate in queer communities is that of slur reclamation. While this certainly happens in disabled communities as well – see the definition of cripple punk – it is, in my experience, more prominent in LGBTQ+ communities. Something, something, a straight cisgender person telling me that queer is a slur, queer remains a slur, and how dare I reclaim it! 
  2. For the difference between big-D Deaf and little-d deaf, and why terminology and capitalization matters, see these resources from the National Association of the Deaf, a i media, and deaf@x
  3. The exceptions are disabilities that refer to specific medical diagnoses, not identity, and intellectual disabilities. Autism is a diagnosis; autistic is an identity. Cerebral palsy is a diagnosis; there is no widely used identity form of it. People with intellectual disabilities have been targeted with dehumanizing language, policies, and violence even more than most disabled people; their community widely prefers PFL. 
  4. On the issue of labeling myself “trans” and “male” on quantitative surveys, I have an idea for a follow-up post about the construction of biological sex in current medical cultures, so stay tuned for that. The very short summary: we put an awful lot of stock into bio sex labeling, even though it doesn’t tell us a whole lot without further information. 
  5. I, personally, do not like being called “an autistic” or having my community referred to as “autistics” or “the disabled” or similar language that removes personhood altogether. Some people are okay with that language and some even prefer it. Like any language and labels, there is significant debate and one person’s opinions or #HotTakes shouldn’t be taken as speaking for an entire community.