This is my first entry using Dragon NaturallySpeaking. My apologies for any dictation errors that I don’t catch – if you catch any, please alert me in the comments.
Since I’ve started reading Autistic blogs, I’ve been surprised by how many posts people have written about people-first language (most recently Autistic Hoya‘s and Kassiane‘s posts). Autistic individuals prefer “Autistic people,” in contrast to most parents of Autistic individuals, who prefer “people with autism.”
It’s not that I’m surprised that self-advocates would take issue with the terminology that other people use to refer to them. This is pretty common among minority rights movements, including disability rights movements. What’s interesting is that the Autistic community has come out on the exact opposite side of the “people-first” debate than almost every other disability community.
I have been a disability rights self-advocate longer than I have been an Autistic self-advocate and have done a lot of cross-disability work, and have found that most people with mental health disabilities, mobility impairments, learning disabilities, intellectual disabilities, and other neurological disabilities generally use people-first language, and many – especially people with psychiatric and intellectual disabilities – find any other kind of language offensive. Prominent cross-disability organizations such as AAPD (which has a good history of having people with disabilities in decision-making positions), use people-first language. In fact, people-first language was initially spearheaded by self-advocates with intellectual disabilities, as is described here. Of course, no community speaks with a single voice on this or any other topic, but there does seem to be an overall consensus here. So far, the only disability communities that I have seen that actively reject people-first language are the Deaf community, Autistic community, and some parts of the Blind community (generally, the NFB hates people-first language, and the ACB apparently supports it but seems not to actually ever use it; both organizations are headed by Blind individuals, but they almost never agree on anything).
This is not to imply that the Autistic community is somehow wrong about the terminology that it wants to use. But it does mean that this isn’t just about a bunch of “allies” who think they know better than Autistic individuals what terms to use. They got the idea from other people with disabilities who strenuously and consistently object to the use of any terminology other than “people-first.” I’m not defending any particular person, but you can sort of understand how it would be confusing for people to hear different groups of disability self-advocates making diametrically opposing demands on what language to use.
This confusion can be pretty easily resolved by simply concluding (as I have) that the correct approach is to assume that, to the extent that there appears to be a mainstream consensus within a community of people with disabilities, that community is correct about the language that is most respectful. Thus, when speaking generally, we should say “Deaf people,” “people with mental illness,” “Blind people,” “people with intellectual disabilities,” “Autistic people,” “people with Tourette’s Syndrome,” etc. (Moreover, if one encounters an “outlier,” their choice should also be respected; if someone makes known that they want to be called a “person with ASD,” then call them that when talking to or about them.)
It would help, though, if we could come up with some sort of coherent explanation for why the Autistic, Blind, and Deaf communities come out differently from other disability communities. Assuming that each group is actually correct about which language makes them feel respected as human beings, why does “intellectually disabled person” offend people with intellectual disability and “person with autism” offend Autistic people? If Autistic people’s interpretation of “people-first” language is to be believed, you’d think that people with intellectual and psychiatric disabilities really like thinking of their disability as an unfortunate, incidental affliction that should be ignored where possible; if people with intellectual disabilities’ interpretation of “disability-first” language is to be believed, you’d think that Autistic, Blind, and Deaf people don’t really think of themselves as people and really want to be seen as only Autistic/Blind/Deaf without any other relevant features. I doubt either is (entirely) true. What’s the actual difference at work here?
I am sure that I’m not the first person to ask this question, but in the limited time that I’ve been reading Autism blogs I haven’t seen any accounts of this phenomenon that, in my opinion, actually explain it.
One proposal, for example, is that other disabilities are acquired later in life, and the people with those disabilities have a sense of who they are “without” that disability and may even hope to be cured. But this doesn’t describe all of the disability groups that prefer people-first language: most people with intellectual disabilities have had their intellectual disability all their lives, and all of the self-advocacy organizations of people with intellectual disabilities that I’ve seen focus entirely on access, self-determination, and independent living, not on “curing” intellectual disability. In fact, very few disability rights organizations say anything about “cure,” especially if they’re controlled by actual people with disabilities (notable exceptions include disabilities that have the potential to be fatal, like diabetes and cancer, and disabilities that are extremely unpleasant to have, like depression). And many Blind and Deaf individuals acquired their disabilities later in life, yet those communities tend to reject people-first language. So overall, whether a disability is late-onset and whether people with that disability want to be “cured” seem not to be correlated with whether people with that disability like people-first language.
Another theory is that, unlike other disabilities, Autism is inseparable from one’s identity. It’s true that people with disabilities who are advocates of people-first language do tend to say things like “we are people first and our disabilities come second,” thus implying that they are somehow separable from their disabilities. Yet it’s not entirely intuitive which people will argue that they’re separable from their disabilities and which will argue that they aren’t. For example, intellectual disabilities intrinsically affect how people think and are present from birth; however, people with intellectual disabilities started the people-first movement and frequently see their disabilities as a secondary part of who they are. On the other hand, deafness is often acquired later in life and has no direct effect on the brain, but many Deaf people will say that Deafness is a core element of their identity, in large part because the Deaf community has its own language and culture. The National Federation of the Blind, for its part, doesn’t seem to have an opinion on whether blindness is a part of someone’s personality and mostly just thinks “people-first” language is gimmicky and pointless.
It may also help to look at terminology in its historical context. In my experience, the communities that focus most on people-first language are the intellectual and psychiatric disability communities, so it’s reasonable to conclude that there’s something about the experience of having those particular disabilities that makes people-first language particularly appealing. (There is also a rather strong cross-disability opposition to the use of mass nouns (such as “the disabled”) and adjectives-as-nouns (e.g., “quadriplegics,” as opposed to “wheelchair users” or “people with mobility impairments”) (here again, the Autistic community is pretty much an outlier in their general acceptance of the term “Autistics”).)
Many people with psychiatric and intellectual disabilities – including myself – are particularly concerned about is the fact that, once you were labeled as “a schizophrenic,” “retarded,” or “mentally ill,” it was assumed that every opinion or desire you expressed was simply a product of your mental disability and therefore invalid. Linguistically separating the disability from the person through people-first language seems aimed at undermining this assumption. So it’s not that intellectual/psychiatric disabilities don’t influence how you feel and think – by definition they do – it’s that people feel the need to minimize this fact in order to be seen as having valid feelings and opinions.
Of course, the Autistic community experiences the exact same problem: people are constantly ignoring Autistic people’s opinions and feelings based on the fact that they’re Autistic. But for one reason or another, the Autistic community seems to be fine with saying “of course I only think that/want that/feel that way because I’m Autistic. So?” while people with psychiatric and intellectual disabilities have a harder time challenging the idea that their disability is about not understanding things, thinking things that aren’t true, and feeling things that aren’t appropriate (the notable exceptions, such as MindFreedom International, also tend not to use people-first language, preferring terms such as “Mad” or “psychiatric survivor”).
This is more or less borne out by my experience as someone on the autism spectrum who also has been diagnosed with psychiatric disabilities. My OCD diagnosis is based on many of the same things – love of repetition, distress on being interrupted, and need to move about in order to think -that underlie my identity as Autistic. Regardless of whether you consider them “OCD traits” or “Autistic traits,” they’re just as much a part of my personality. And I still identify as having OCD and being part of the psychiatric disability community, based in part on those traits. But I hate being called “mentally ill” as opposed to “a person with a mental illness/psychiatric disability,” because I feel like it automatically devalues my feelings and opinions.
But still… why, given the fact that people devalue the opinions of Autistic people as well, does it feel awful to be called “mentally ill” and not “Autistic”? It may be relevant that while almost everyone – with or without a psychiatric/intellectual disability – has the experience of being called “retarded” or “crazy” by someone who didn’t want to listen to what they had to say, it’s much less common for the ideas of non-Autistic people to be casually labeled as “autistic” by people who don’t like what they think (one exception that I’ve seen is people’s use of the term “autistic economics” to refer to economics that doesn’t take into account economic actors’ feelings and experiences). But I’m not sure that’s the whole difference.
I really want to see what other people think about this, particularly people who prefer people-first language for some or all of their own disabilities. What makes people-first language preferable in some contexts but not in others?