On Person-First and Disability-First Language

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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18 Responses to On Person-First and Disability-First Language

  1. I broadly agree with you: it is about the effects of the condition. I prefer disability-first for conditions that I consider part of my identity, and person-first or “have” language for conditions that I don’t. I am autistic; I have ME and endometriosis and hEDS. I do usually say “I am [a recovering] bulimic”, even though bulimia has no redeeming features at all for me, but possibly that’s because the roots of that go back to when I was six years old, so it’s been very much part of my formative experiences. Anxiety, on the other hand, is so unremittingly awful and was such a relatively late arrival for me that I almost always say I “suffer from” it, which I never say about anything else even though suffering is definitely something that all of the others cause me. I guess that makes anxiety more akin to the “person first” conditions, for me.

    I also agree that we should generally use the terminology that a given community typically prefers (the exception being where we are talking about a specific individual whose preferences are known to differ from the community’s.)

    I’m curious, though, that you want disability-first to be the default where the community preference is not established. As you can see from the previous paragraph, in my life person-first conditions outnumber disability-first ones two to one, and that’s without counting temporary conditions like viruses and such. Am I atypical there? Because if I’m not, then it seems to make sense to guess “person-first” where we don’t know what a given community typically prefers.

    • Andrew Hickey says:

      My view that one should use disability-first as a default is a gut one, and basically comes from a few factors:
      In my experience, most disability activists prefer disability-first — this could be a skewed sample, of course, but it seems a clear majority to me.
      More importantly, while there are disabled people on both sides, the people who argue for disability-first seem to get a lot more upset than the people who argue for person-first, so disability-first would seem to cause less harm.
      Also, I’m personally persuaded by the general thrust of Sequenzia’s argument, if not the specifics — while I don’t think person-first language use *by people with disabilities* is ableist, I think that its use *by not-yet-disabled people* is often rooted in ableism, and certainly the promotion of it in social work and so on has been done for (well-intentioned, patronising) ableist reasons. I think encouraging people *not* to assume that it’s the “correct” wording would be good for that reason.

      I’m persuadable otherwise though.

  2. glyncoch says:

    As the father of a young man with Downs syndrome, I am fascinated by the many different approaches to this subject. Some time a go I attended the 90th birthday party of Judy Fryd who founded the “Society of Backward Children”, later Mencap where one of our members told the history of the society and the way it had fought for recognition and to change public perceptions of learning disability. He pulled no punches about archaic attitudes and used what seems rather shocking old fashioned language to describe Downs syndrome.
    I was sitting at a table with half a dozen young people with Downs syndrome, and after the speeches asked them what they thought of some of the terms that Alan had used. They thought about it for a minute, and then agreed that they did not care what terms were used. They said that they had difficulty keeping up with normal conversations, and could be clumsy, and need help with normal tasks. The important thing was that people knew that, and were prepared to help when necessary and to work with them to live together productively. What they did not like was the ever changing language, which they thought was confusing, and unhelpful.
    But what impressed me was their humanity, their willingness to adapt to “normal” people, (whatever they are) and their wish for acceptance. They wanted their humanity to be recognised more then language to be “corrected”,
    But it is obvious that there are many ways to approach this subject, and perhaps the people with the real problem over language are the Social Workers who make (and then change) rules about language. Perhaps the rest of us should be more sympathetic about their linguistically obsessive behaviour!

  3. Mike Taylor says:

    There is a meta-issue here, which I think is maybe even more important than the issue.

    When people outside of these communities (such as myself) see what appears to us as angels-on-pinheads squabbling, the effect is intimidating and alienating. We see people speaking in jargon we don’t understand, getting cross with each other and with us for reasons that appear opaque. For a lot of people, I think the simplest response is just to stay away from the relevant communities completely, for fear of offending someone or being outed as disablist, or what have you. Which is surely not the desired outcome.

    When something as apparently innoccuous, or ever virtuous, as ““I don’t think of you as black — I don’t even *see* colour”” is interpreted as racist, there is a strong temptation just to throw up one’s hands in dismay and give up on the whole game. (I am not saying that temptation is laudable; just that it exists.)

    Honestly, folks: isn’t it enough just to say we should describe any given individual in the way that individual prefers to be described, and leave it at that? If Bob well-meaningly refers to someone as a person with a disability when that person prefers to be described as a disabled person, then of course that person should feel free to put Bob straight, and he should do his best to remember. But the way this seems to go down is that instead Bob is lambasted as ableist or insensitive or culturally divisive or some other criticism that he’s never even heard of before. Can we really blame Bob if he opts to stay over in the corner with his middle-class white male heterosexual able-bodied friends rather than mingle, when mingling puts him at risk of being alternately lambasted as ableist by the People’s Front of Judea, and as insensitive by the Judean People’s Front?

    All I’m saying is that a culture of a bit more inclusion and a bit less orthodoxy-policing would help everyone (especially when orthodoxy seems to move so fast).

    This has been a party political broadcast on behalf of the Middle-Class White Male Heterosexual Able-Bodied Party. Thanks for listening. Please be nice to me.

    • (Before reading this — I apologise if this is incoherent, upsetting, or offensive. I had some very bad drug reactions to my methotrexate last week, I’ve come off it, and I’m having some severe cognitive difficulties while my metabolism settles down again. As a result I have much less control of my tone and coherence levels than normal. What follows is not meant to be read in an angry or sarcastic way, but in a friendly tone, and I apologise for any logical fuzziness.

      Also, anyone else replying to Mike’s comment — Mike is a friend of mine. Please take that into account in the tone of your own comments.)

      To an extent. However, in practice, what this means is that people with a disadvantage in society as currently constructed (whether trans people, people of colour, disabled people, whatever) are being given the additional disadvantage of having to educate other people.
      What your argument boils down to is that less-privileged people shouldn’t say words like “ableist” or “racist” for fear of upsetting privileged people, whose upset is understandable, but privileged people should feel free to say things that upset less-privileged people. The reaction of “I don’t want anything to do with you, because you called me a name” is one that’s acceptable here for the privileged person, but not for the unprivileged one.
      If it is OK to take offence at being called ableist or racist or whatever, then *surely* it should be at least equally OK to take offence at ableist or racist behaviours.
      As someone who is privileged on almost all axes (cis, straight, male, white, married, educated, frankly overpaid) I think for me to then expect people who *don’t* have those privileges to patiently and carefully educate me about something of which I’m ignorant — when those people may have had to give those same explanations twenty or thirty times before that week — would be horribly arrogant. If I say something racist, for example, the reaction should be *at best* “that’s racist”, and it should be up to me to find out why, not them to tell me why.
      The “culture of a little more inclusion and a little less orthodoxy-policing” you’re asking for is actually a culture where people of colour, disabled people, LGBT people, and so on, are asked to make life harder on themselves in order to make life even easier for people who already have it easier than them. It’s asking for people who are being hurt to put their energy — which may well already be limited by their lack of privilege — into being nice to the people who are hurting them, rather than asking the people doing the hurting to make the effort.
      I realise it doesn’t seem like that on the surface, but what it’s very hard for those of us with this immense amount of privilege to realise is *just how hard marginalised people are already working* and how often they have to deal with these things. If it takes a trans person, say, half an hour to explain properly to someone that no, they are the gender they say they are, and they only have to do this once a week (which is frankly unrealistically low, if the experiences of the trans people I know are anything to go by), that’s twenty-six hours of their life every year that they spend on doing the same thing over and over, for which they get no compensation whatsoever. Twenty-six hours of their life lost as a kind of “transness tax” — one of many, many, such taxes that society imposes on them.
      To the cis person asking them for an explanation, it’s “only half an hour”, and might save that cis person a whole hour or two on Google, so surely that’s a good tradeoff. But it’s never only that one person who needs educating, and someone shouldn’t be forced to disrupt their own lives, over and over again, just to be able to exist as trans (or disabled, or Muslim, or bisexual, or whatever).
      And again, I’m saying this as someone who is almost always the privileged person in these interactions (not always — I am mildly disabled, from a working-class background, Northern, and so on). I think my job when it comes to people without my privileges is to listen to what they have to say, wait until I’m about ninety percent sure I understand, ask questions only of those who have indicated they are willing to answer them, and then try to signal-boost the answers as much as possible so other cis straight white men will know the answers without having to ask the same questions (without ever presuming to speak *for* those groups, of course).
      I realise this sounds like asking a lot of well-intentioned privileged people, but one thing I read that’s stuck with me (I *think* on the Feminist Aspie blog, but I may be wrong, this was a few years ago) about autism, which I strongly suspect is true of other less-privileged groups and is definitely true of autistic people, is that people will often say “why won’t you meet me half-way here? I’m willing to do X, why aren’t you willing to do Y?”
      What they don’t realise is that the autistic person *has already moved 95% of the way towards the other person’s position*, and that when they’re asking for them to meet them half-way, what they’re actually doing is complaining about doing 5% of the work, and asking that they be allowed to do only 2.5% with the other doing 97.5%, and feeling aggrieved when the autistic person complains.
      That doesn’t make their feelings of grievance any less real — they genuinely don’t see that 95% movement — and so, yes, it’s better to be polite and understanding than not. But it’s certainly not unreasonable for the person doing 95% of the work to object to being asked to do more.

      • Mike Taylor says:

        “If it takes a trans person, say, half an hour to explain properly to someone that no, they are the gender they say they are …”

        But that’s not at all what I said. What I’m asking for is “Actually, I prefer to be referred to as ‘she'”, as opposed to “you are a sexist, ableist, transphobic representative of the oppressive patriachy”.

        Note, too, that I am not saying that anyone owes anyone this. I’m saying that well-intentioned privileged people whose attempts to forge friendships outside their in-group are met with accusations or sexism and transphobia (rather than a simple correction) are not likely to keep trying. Like I said: I’m not saying it’s laudable; just that its true.

        Anyway, I’ll leave it there. I guess my comment was just asking to be misinterpreted, and I should have known better than to post it in the first place. The last word is yours.

    • The problem with “““I don’t think of you as black — I don’t even *see* colour””, and other statements of that general form, is that the person it’s addressed to almost certainly does think of themself as black, and has to be able to see colour as a matter of survival, because they have learned that a significant subset of white people are dangerous to them. So when a white person insists that they aren’t aware of a person’s blackness, that white person comes across as denying a very important part of the history that has made the black person who they are, and the black person feels that the white person has no hope of understanding them or their needs. Depending on how urgent the black person’s needs are in the situation where it is said, it may or may not be innocuous; it certainly isn’t virtuous. It only seems that way relative to out-and-out bigotry of the Alf Garnett variety, but I’d like to think we’re better than that and can value people for their diversity, not in spite of it.

      • gavinburrows says:

        I think you’re entirely right there. But also it suggests that the problem of racism is generated by skin colour, its just that that some of us are enlightened enough to see through that. Whereas what racism really is, is a social construct. It’s created inside people’s craniums, or – and often most dangerously – through the workings of institutions. Skin colour is just something handy to peg it on.

        (On the general topic I’d have very little to say. I’m not nearly well versed enough in ableism to say anything useful.)

    • po8crg says:

      I think that part of the problem here is that there are lots of people in the Middle-Class White Male Heterosexual Able-Bodied Party who can’t tell the difference between “that’s racist” and “you’re a racist”.

      We all slip up and say racist, sexist, homophobic, ableist (etc) things from time to time. That doesn’t make us all racist, sexist homophobic and ableist.

      If your response on being hauled up for getting it wrong is to see that it being a personal attack, then of course you’re going to see it as “But the way this seems to go down is that instead Bob is lambasted as ableist or insensitive or culturally divisive or some other criticism that he’s never even heard of before.” A lot of the time I see Bob told “that’s a racist phrase” and his response is “How dare you call me a racist!”. After which it’s no great surprise that one group walks away convinced he actually is a racist and he walks away convinced he’s being lambasted for getting the words wrong.

      If your response to “that’s a racist phrase” is “I’m sorry”, then you’d be surprised how much better it usually ends up going. Especially if you don’t demand an education, but you’re prepared to go and look things up yourself.

      • Mike Taylor says:

        “… who can’t tell the difference between “that’s racist” and “you’re a racist”.”

        That is a good point.

        (And let’s also beware of the converse problem: saying “You’re racist” when we mean “That’s racist”.)

  4. David Gillon says:

    Good piece. Something I’ve been talking about a lot recently thanks to the Sequenzia* piece and the #saytheword campaign, but also because it does come up a lot for reasons I’ll get to. I’m speaking from a similar soft of background to yours, neurodiverse plus a physical disability. In my case I picked up my approach to disability language on the BBC Ouch board in the early 2000s and that’s resolutely Social Model and Disabled Person. I could do without the pain of being hypermobile, or the anxiety that spins out of being neurodiverse, but at this point the other physical aspects, even being a wheelchair user, don’t bother me enough to want to be cured of them.

    I do think there is a problem with the PWD structure, I think a lot of people use it because they believe a disability is a negative, something to be ashamed of, and therefore that separating it from the person is a good thing. So it’s symptomatic of a problem in their belief about our equality. And worse, I repeatedly come across instances of non-disabled PWD advocates abusing disabled people for using identity-first language and insisting that they are right, I’ve seen it twice at first hand since the start of the year, and heard about a worse incident – a disability studies class at war between the disabled and non-disabled members, because the disabled members are abused every time they use their preferred identities. There does seem to be a common factor in a lot of this, that a significant percentage of the people insisting a disabled person can’t know their minds on this, are graduates of US Special-Ed (ick!) teacher training programmes. It always seems to be autistic people being insisted to as well. I’m not sure if that’s because I follow a lot of autistics, because they run into more issues with people over their right to articulate their identity, or what.

    If people won’t listen to us on PWD, it’s probably a sign they won’t listen on other things, and don’t actually regard us as their equals. So this debate is more important than people might think. As an example of that, DWP are pushing ‘see the person, not the disability’ as part of the Disability Confident campaign. If an employer has been told not to see my disability, how do I convince them to give me the reasonable adjustments I need? It’s difficult to think of anything Disability Confident gets right, but that refusal to listen to us is a constant.

    *Possibly important to note here that Amy Sequenzia isn’t speaking solely from the autism viewpoint. She has significant physical disabilities as well.

    • Broadly agreed with most of this. As to your footnote, I intended my “although we are both disabled in other ways” to cover that, but agree it could have been clearer.

      (And *very* agreed on the “how do I convince them” thing. This is *very* important.)

      • David Gillon says:

        I wasn’t intending to criticize your “we are both disabled in other ways”, more trying to make it clear that Amy Sequenzia probably means her position to be applied to all her disabilities, and to disability in general.

        • Andrew Hickey says:

          I’m sure she does — but I think her opinion is probably *more* informed by her autism advocacy (judging from the various things I’ve read of hers over the last couple of years) than by her physical disabilities, and that she seems to be conceptualising those things in a framework developed for dealing with autism. Which is not necessarily a bad thing, but I suspect (I may be wrong) that this is why she’s more dogmatic in her insistence that person-first language is always ableist, rather than my rather weaker claim that it often is.

          • Ura says:

            “So there are no identity-first constructions for ‘people with physical disabilities’?” asks this physically disabled crutches user.

            • Andrew Hickey says:

              That’s the exact opposite of what I said. “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.” *specifically* mentions blindness as a physical disability for which identity-first constructions are preferred.
              I have answered your questions, despite them being phrased rather rudely, because it’s just about possible that they were asked through genuine misunderstanding. However, I don’t actually believe they are, and the combination of what I believe to be deliberate misreading, your unpleasant tone, and your homophobic made-up email address, means you’re not welcome to comment further and your IP address has now been blocked from commenting. Have fun trolling elsewhere.

  5. Ura says:

    […] you wouldn’t say “a spastic person”, you’d say “a person with cerebral palsy”.
    Even if that person prefers to be called a CPer?

    • Andrew Hickey says:

      No. You’d say “a CPer”. In my experience that’s not the preference of any people with CP I know, though.

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