Language and disability

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There is quite a lot of controversy about what language is appropriate to use for discussing disability. In terms of talking about people, the obviously polite and ethical thing to do is to refer to people using the terms they prefer, and not impose other ones on anyone for any reason. But I'm quite often talking generically, or talking about a stranger whose preferences I don't know. Currently my default is to say people with disabilities and related language, except when I know that a particular individual dislikes this "person-first language". My default is the other way round for a few specific conditions where I know that person-first language is generally unpopular in activist communities, so I'll say autistic people and D/deaf people, not *people with autism or *people with hearing loss.

However, I'm seeing increasing pushback from disabled activists against person-first language, and I'm thinking it's maybe time to switch my default unless I know that a particular individual prefers person-first. Note I'm not considering this in response to obviously rubbish criticisms of person-first language; "it's politically correct" is not a reason to reject person-first language, I would far rather be politically correct than be the kind of jerk who thinks that calling people by terms they find insulting is taking a brave stand for free speech. "It's all too complicated and you can't win" is also a reason that holds no weight with me, it's my responsibility as an abled person to go out and learn what language is appropriate, and yes, that changes as people's conceptions of their identities shift, and it's different in different contexts, but that's not something for me to whine about. But when actual disabled people are saying that they don't like person-first language, that they find it patronizing or insulting, that's a reason to change, despite carefully cultivating the habit over many years because I believed it was respectful.

One of the reasons that's often given why one shouldn't use person-first language is that it's an American, not a European convention, and that it's based in the medical model of disability. If I'm talking about a person with a disability, it sounds like I'm saying that they're a person who has this unfortunate thing wrong with them. Rather than someone who may strongly identify with their condition and as disabled in general, and someone who is disadvantaged, disabled, by a society that values normative bodies at the expense of everybody else, which is what social-model following disability activists would prefer me to convey. This doesn't ring true to me because I first learned about person-first language from people who are definitely British and definitely passionately committed to the social model of disability and to disability rights activism, the same people who taught me the principle / slogan nothing about us without us. But I don't want to say, you, disabled person, are wrong and I know better because I have some peripheral association with the mainly academic bits of the disability community.

So I was very interested to see this blog post by Andrew Hickey: On person-first and disability-first language. In particular, Hickey says

And an important thing to note is that person-first language was drilled into everyone in mental health services, disability services and so on, at least in the UK and I believe elsewhere, from about 1990ish onwards.

And that makes more sense of why I think person-first language is respectful but many of my disabled / neurodivergent etc friends and activists on the internet don't think so. I think what happened is that historically, activists, very much including in the UK, pushed for person-first language, and they were successful, such that it was adopted by, well, people who provide medical and caring services for PWD. So I can see how this came to be associated with the medical model; in fact, many service providers are committed to the social model (it's certainly what we're teaching the medical students, for example), but since in fact their role WRT disabled people is to provide care and assistance, it's easy to see how their language gets associated with medicalization and the cure narrative and so on, and how it centres the care providers rather than the disabled people themselves.

So it's possible that the story that person-first language means medical model is a bit of a myth, but in lots of ways that doesn't matter. It's perfectly reasonable for people to decide how they want to be described, and for that to vary in different times and situations and so on. "I/we prefer disability-first language" is a sufficient reason all by itself. But people feel like they have to have a justification to ask abled people to change our language, leading to the emergence of folk etymologies about why person-first language is insulting. It's a similar process with handicapped, which at some points in history was the polite, PC term for what we would now call disabled. Many people now believe that handicapped comes from "cap-in-hand" and refers to disabled people asking for charity and handouts. That's factually not true, that was never the etymology, and the term was chosen in an attempt to be respectful by analogy with sports handicapping – you don't think worse of a jockey or a golfer with a higher handicap than their competitors. But lots of people believe it, and what is true is that it's generally a disrespectful way to refer to PWD nowadays. Basically because it's associated with an era where disabled people were segregated away from society and that might have been done with good intentions initially but segregation and institutionalization inevitably lead to cruelty and abuse.

And yes, it is a bit of a euphemism treadmill. New terms are coined by activists, and they are taken up initially by people who are trying to support disabled folk, and eventually by pretty much everybody, but if underlying attitudes don't change, the new term becomes an insult in its own right. But that's not a problem with the activists coining the terms in the first place, and it's not a reason to insist on language which is now outdated and considered offensive.

Hickey's post is really nuanced, and has provoked some really great discussion in the comments about the subtleties of both disability-first language and the cure narrative in general. It's also provoked an absolutely stereotypical angry abled guy complaining about he feels alienated and intimidated by all the infighting over terminology and he'd rather stay away from communities of disabled people altogether because he's scared of offending people. I'm trying very hard not to be that guy. It's complicated not because disabled people are being deliberately mean and excluding us TABs, or because they're having pointless petty fights about details that don't matter, it's complicated because this stuff actually is complicated and there isn't one straightforward answer.

Comments

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Yes, this all makes a great deal of sense and thank you for laying things out in detail. The Sequenzia piece makes a very good point about person-first language often being used to soften things that might otherwise be negative. And very very obviously she's right that insisting on your own ideas of what's PC over someone's expressed preferences for identity terms is unacceptable. I feel like this is a case that should be too obvious to need arguing, but clearly that's not true, and it's particularly bad when it's abled people doing that to disabled and neurodivergent people because of all the history of infantilizing and denying people autonomy.

I would absolutely give authority to the BBC Ouch boards on matters of disability history, but it's obviously hard for a particular online forum to be really representative. There's a certain kind of disability activism which is often cognitively, as well as physically, inaccessible to many disabled people, and that doesn't mean the activism is not worthwhile, just that it's not the whole picture. I mean, I know plenty of disabled people who really dislike the social model, because their disabilities are real and embodied and genuinely negative for them, not some social construct which isn't "real" and might even be seen as "all in their heads". And I know that's not what the social model actually says, but it's a complicated academic idea that isn't well understood by lay people no matter whether their bodies are favoured or disabled by current society.

I was pretty much assuming that the whole movement for liberation and integration, the challenges to language which while previously polite had become insulting, and the development of the social model itself partly came from disabled activists. I'm thinking mostly 70s and 80s, but I'm not sure of the timescale. Like, it wasn't just that the medical and academic establishment magically decided to become benevolent and stop medicalizing, institutionalizing and abusing disabled people. Those changes happened because of grass-roots activism. Of course, when activist approaches become institutional policy, the original message gets corrupted, but it's still a success for the activism to bring about institutional changes. And of course it's valid for a later generation to say, this language is tainted by the way it's been used by the establishment, so we're going to overturn it again and reclaim a language which is ours rather than imposed on us. I don't think it's as straightforward as, terms from within the community are always accepted and stay static forever, but terms imposed by outsiders get rejected as patronizing and cutesy. I've certainly seen it with language around trans and related issues, that in-community activists pushed for the adoption of better language, and that new language was used as a tool by those in power to further oppress marginalized trans and gender non-conforming people, so it has become controversial, so it seems plausible that the same has happened with some of the language around disability.

But most of that is guessing and assumptions and fragments of knowledge picked up here and there. If someone corrects my language about a minority identity I don't share, I'm not going to make them demonstrate their credentials to me. So I honestly don't know whether it's purely non-disabled false allies who have influenced my ideas on the subject. It also isn't really important to know the origins and history of a particular term, far more important is listening to people telling me how they want their identities to be described.

I do think it's a good point that any attempt to update and improve language can have the down side of making the original identity referred to seem negative. I certainly know of several examples of that with race language, for example. So I have a lot of positive feelings about #saytheword and related activism.

[davidgillon]

I know that's not what the social model actually says, but it's a complicated academic idea that isn't well understood by lay people no matter whether their bodies are favoured or disabled by current society.

Oh, indeed. And in fact I and several other people started off in those Ouch discussions from the position that the Social Model had problems with the impairments which were intrinsically unpleasant without needing to involve society - mostly because we all had them. On the other side of the debate, Bob Williams-Findlay, former chair of the British Council of Disabled People, and Bob converted me and at least shifted most if not all of the others closer to his point of view, which was that the Social Model does have universal applicability, people just need to understand all of its implications (and most people don't).

And because of Bob's background as a prominent long term disability rights activist, I tend to think we probably got a fairly accurate history of the movement WRT the Social Model.


I was pretty much assuming that the whole movement for liberation and integration, the challenges to language which while previously polite had become insulting, and the development of the social model itself partly came from disabled activists. I'm thinking mostly 70s and 80s, but I'm not sure of the timescale.

IIRC, the disability liberation movement started in the late 60s in California, with activists pushing the modern model of assisted living, where the disabled person exercises control, rather than being controlled. Following closely on the heels of that in the UK was UPIAS - the Union of the Physically Impaired Against Segregation - in the early 70s, which gets some justified criticism as 'white men in wheelchairs', but some of the early disability studies academics came out of that, as did the proto-Social Model in about 1976 - and that was a very deliberate redefinition of 'impairment' and 'disability' to they way they're used by the Social Model. The 'white men in wheelchairs' aspect meant the precise wording was focused on physical disability, but that was the base from which the full Social Model grew.

t also isn't really important to know the origins and history of a particular term, far more important is listening to people telling me how they want their identities to be described.

Absolutely!