I was going to do a post about the 1966 Batman film today, but I don’t have the brain because of my arthritic fatigue. Instead I’m going to talk about disability, identity politics, and language use. Because that doesn’t require any brain at all.
(Actually, this doesn’t require very much brain — I’ve actually copied bits of this from a Tumblr post I did a few months ago, and a bit from a Facebook comment I made this morning, so there’s not much new writing here — but it’s all in one place now, and edited into something more coherent).
I’ve seen a thing being shared around by the respected disability advocate Amy Sequenzia, the basic thesis of which is:
If you are not Disabled and you are demanding the use of Person First Language (PFL), you are being ableist.
If you are Disabled and you are demanding that other Disabled people use Person First Language, you are being ableist.
If you are Disabled and want to use Person First Language when referring to yourself, I will respect that. I will also respect your right to demand that other people use Person First Language when referring to you.
But the Person First Language concept is ableist, and I can tell you why.
Now, I actually agree with Sequenzia more than I disagree with her here, but I want to unpack this a little more, because I think that this is largely — but crucially not always — true.
The background here is that both Sequenzia and myself are autistic, and although she is a far more important advocate than me, we’re both coming from being members of the autistic self-advocacy community — her centrally, me more peripherally — although we are both disabled in other ways. And I think she’s talking about something that is a lot more applicable to autism than to some — though not all — other disabilities. Before we go on, though, I want to emphasise that Sequenzia is someone for whom I have a good deal of respect, and I’m not meaning here to be “correcting” her so much as engaging in dialogue with her post.
For those who don’t know, person-first language is when you talk about someone with an illness or disability and say “a person with”, so for example “a person with a visual impairment”, “a person with schizophrenia”, “a person with autism”, rather than “a blind person”, “a schizophrenic person” or “an autistic person”.
The thinking behind person-first language is that when you use adjective-first language you often end up eliding the word “person” altogether, and saying “a schizophrenic” or “an autistic”, and that that in turn makes one forget the humanity of the people one is talking about. The argument is also made that one would not say, for example, “a cancerous person”, and so one shouldn’t use the adjective to describe something someone is, rather than something someone has. And also, in many cases, the most common adjectival form of the condition can be one that’s used as an insult, so you wouldn’t say “a spastic person”, you’d say “a person with cerebral palsy”.
The counterargument is that for many of us, our condition is part of who we are, and that in the same way one wouldn’t refer to “a person with blackness“, or “a person with lesbianism”, because one’s skin colour or sexuality are not something other and separate from oneself, in the same way autism, for example, is not something removable, and so shouldn’t be talked about in the same way we talk about cancer.
Sequenzia makes a further argument, that “see the person, not the disability” is erasure in much the same way that “I don’t think of you as black — I don’t even *see* colour” or “you’re not like those *other* women” are.
There is also, among many disabled activists, a perception that person-first language is patronising, because no-one should need to be reminded that people with disabilities are people.
Note there though that I said “people with disabilities”. The thing is that different disability and illness communities see the issue in different ways, and those communities aren’t uniform. The autistic self-advocacy community, which is what I’m most familiar with, tends to prefer adjective-first, but it’s not a clean 100% preference – more like 70% adjective-first, 20% person-first, 10% don’t care, as I recall (it’s been a while since I looked at the research).
The community of activist parents of autistic children, on the other hand, prefers person-first language by an overwhelming majority (which is one of the many reasons that autistic self-advocates get annoyed by the parenting groups which claim to speak for their autistic children, because those groups don’t listen to autistic people even on very simple things like this).
[NB I am talking here about a particular type of parent of autistic children, not about the majority of parents. All the parents of autistic children I know personally are exceptionally good people, who do their best to be good parents to their children. But if you haven’t experienced the type of parent-activist I mean, you should count yourself very lucky.]
But person-first language is useful for *some* things. People who see their conditions as problems, not as part of themselves, and who actively want a cure, seem to prefer it even within the disability-rights communities.
For example, in my own case I am autistic. My autism is a part of me, it’s only disabling because society makes it so, and I wouldn’t be the person I am, in millions of ways good and bad, without it. Not only would I not take a “cure”, I am terrified of the possibility of one being developed, and have said many times, only half-jokingly, that I’d love to see a cure developed for neurotypicality instead.
I’m not, however, arthritic. I’m someone who has arthritis (I probably wouldn’t say “a person with arthritis” but “I have arthritis”, but I think that’s close enough to person-first language for these purposes). The arthritis is an entirely negative, other, thing which I would get rid of without even a second’s thought. It has no positive, or even neutral, effects on my life, and nor has it been such a central part of my existence that it has changed my perspective on the world or anything like that. It just makes me tired all the time and makes my back and knees hurt and my feet swell up. It’s no more part of who I am than a cold would be.
I think one has to look at the norms, not just of “the disability-self-advocate community”, but of the individual communities for different disabilities and illnesses. I know that, for example, almost all the people with ME I know (I don’t have it myself, but for some reason it’s one of those illnesses that clusters in my friends) use “people with ME” (or just PWME for short), while autistic people use “autistic people” the vast majority of the time.
Most of those people — and *please* feel free to correct me in the comments if you have ME and see this differently — see their ME not as part of their identity, but as something other to themselves. I don’t believe that makes them ableist, even internally.
So it really does depend on which groups you’re talking about. I prefer adjective-first myself most of the time, but that’s because I prefer it for autism and my legally-blind wife prefers it for visual impairments. Other groups go the other way.
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. Certainly when I was volunteering with learning-disabled people in the mid-90s, when I was briefly working with them professionally in the early 2000s, and when I worked on a psych ward in the mid-late 2000s, person-first language was the way you had to talk about patients or clients.
So while many people using person-first language (those parents of autistic children, for example) can be taken to be ableist, many of the others should be presumed to be making a good-faith effort to be respectful. For many people, though not all, it’s what they’ve been told is the most respectful way to talk — so long as they switch back when they’re told this isn’t the case, there’s not a problem in my view. But they *should* change when asked to by a disabled person.
I think, though, that to say that all person-first language is inherently ableist is to argue that it is inherently ableist for disabled people, whatever their disability, to think of their disability as something other, rather than part of their identity. And I simply don’t think that’s the case — and I don’t think it’s at all right to try to say that people’s reactions to their disabilities should follow a particular pattern.
I think what we can safely say is that person-first language should not be the default — that it should only be used for those communities or individuals who have expressed a preference for it. But that preference is not an invalid or ableist one. It’s a response to a different set of effects the disability has on the disabled person, and should be respected.
(And speaking of respect, this topic has touched a *lot* of hot-button topics, so if you’re going to comment please be respectful. Please presume good intention on my part, and on the part of any commenter who disagrees with you — I may well be very wrong, but if I am telling me why will be more use than name-calling. On the other hand, if you’re not sure you know what you’re talking about on this topic, it’d probably be best if you didn’t comment, because comments made out of ignorance may well cause offence.)
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