Person-first language and being defined by our disabilities

Like many Autistic adults I have a strong dislike of the use of people-first/person-first language to talk about autism*. This is a way of referring to disabled people where you put the person before the disability and say ‘person with…’ or ‘person who has…’ (eg. people with Down syndrome, person with autism). I find it inappropriate for talking about autism because Autism isn’t something I ‘have’ that’s separate from me, but is a part of me, and the fact that people would want to separate it from me implies that it’s something undesirable. I use identity-first language: I’m Autistic.

When justifying the fact that the National Autistic Society doesn’t use identity-first language despite this being the preference of many Autistic people, an NAS spokesperson said,

Some people do not want to feel that they are ‘defined’ by their disability and prefer to be described as a ‘person with autism’ or someone ‘on the spectrum’.

This made me wonder about what being ‘defined by’ a disability means and how person-first language is supposed to avoid it.

We’re more than our disabilities

Andrew Pulrang wrote that when disabled people say they don’t want to be defined by their disabilities, they mean that they don’t want other people to behave as if their disability is their only important characteristic. He described the ‘frustration and pain’ of being seen as nothing more than a disability and not a whole, complex person. This matters – Pulrang wrote that when abled people see someone as nothing but a disability they assume they know everything important about the disabled person and may avoid talking to them or hiring them.

Pulrang, and another disabled person he quoted, wrote that their disabilities are a part of them, but not all of them, and that they want other people to see their other characteristics, not just their disabilities.

Soon after I was diagnosed with Asperger’s, more than one person explained to me that there is more to me than just Asperger’s because I have many other characteristics as well. I was surprised that they were concerned that I would define myself by my disability, because it seemed very obvious to me that I had traits other than my autistic traits. It also seemed strange that they wanted to remind me about things besides autism while I was still marvelling about how my diagnosis explained almost everything that was different between me and everyone else I knew. (Though I don’t remember getting the ‘disability doesn’t define you’ talk after I was diagnosed with depression.)

I don’t worry much about people defining me by my disabilities. I probably haven’t experienced it because I generally don’t ‘look disabled’; my disabilities aren’t particularly obvious and I often make some effort to hide them.

Language matters

Many people think in words, so it makes sense that the type of language we use can influence the way people think. People who promote person-first language often say that it helps you avoid defining people by their disabilities.

The People First website claims that PFL

eliminates generalizations, assumptions and stereotypes by focusing on the person rather than the disability.

Kathie Snow wrote on her (highly problematic IMHO) Disability is Natural website,

Like gender and ethnicity, disability is one of the many characteristics of being human…Would you want to be known by one trait, like your medical diagnosis?

Katie Nelson wrote,

It’s why you will never hear me say that Alex is autistic. It is not the defining adjective for him. He is an amazing, sweet, kind, loving, interesting, and wonderful person. He also deals with the challenges that come with having autism.

So PFL is supposed to avoid defining people by their disabilities by focusing on the fact the disabled people are individuals.

But I don’t think saying, ‘He’s autistic’ implies that autism is someone’s only characteristic, or something that’s incompatible with being sweet, kind, loving and interesting; English grammar doesn’t work this way. Adjectives (such as ‘autistic’) don’t define nouns (such as ‘person’), they add detail. You can say, ‘a purple vase’ or ‘a tall vase’ without suggesting that its colour or height are its only important characteristics. It might also be expensive, pretty, old, etc. And none of these adjectives detract from the fact that it is a vase.

People are happy to call someone friendly or blue-eyed without worrying that their language defines a person by their friendliness or eye colour. So it’s not the word order that causes an adjective to define a noun. I think people define others by their disabilities because of prejudice, stereotyping and ignorance. So when you insist on PFL to prevent this, you’re not fixing the source of the problem. It would be better to reduce the stigma associated with ‘autistic’. And by treating ‘autistic’ like it’s a rude word, PFL might even contribute to stigma.

I expect that prejudice, stereotyping and ignorance mean that members of other marginalised groups experience being defined by a single trait, such as their sexuality, race or religion. But nobody argues that we should use PFL for describing Black people, Muslims or gay people. We don’t say people with blackness/Muslimness/homosexuality. We don’t say,

You will never hear me say that Alex is gay. It is not the defining adjective for him. He is an amazing, sweet, kind, loving, interesting, and wonderful person. He also deals with the challenges that come with having homosexuality.

This contrast with the language of disability seems odd to me. I don’t know why the language of disability is different from the language used to describe any other trait. I think one of the main problems with PFL is that disability is the only aspect of human identity that it’s used for, so it sets disability apart as something strange, not a normal part of the human experience.

Psychologist Nick Haslam argued that when someone is described using a noun, for example, ‘an introvert’ or ‘an Autistic’, this language does imply that this is the characteristic that defines them, because it makes people think the description is a ‘fundamental, unchanging aspect of the person’. When you describe someone using an adjective, for example ‘an introverted person’ or ‘an Autistic person’, people are more likely to see it as just one of that person’s characteristics. So it’s probably a good idea to avoid terms like ‘Autistics’, ‘paraplegics’ and ‘the disabled’.  But I’m not convinced that person-first language is helpful.

*I don’t like PFL, but most disability communities, for example people with learning disabilities (UK)/intellectual disabilities (USA), have a preference for it, so it’s polite and respectful to use PFL when talking about these disabilities.

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16 thoughts on “Person-first language and being defined by our disabilities

  1. Same here with 47,XXY as a condition. Many XXY men say, they don’t like “person with XXY” or “having XXY”, they ARE XXY and some researchers even respect this way of description and use XXY men, XXYs or XXY individuals in their publications. If the term Klinefelter’s syndrome is used as mutally exchangeable for XXY, only deficits are emphasized, especially physical deficits and probably social skill deficits as well. Using XXY instead is a neutral term which comprises all negative AND positive sides of XXY men. If I say I AM XXY, it’s a full description of me, though I tend to have more autistic traits than other XXY men and autism might add to that description. We are both suffering from the prejudice against autism and Klinefelter/XXY. There is a need to explain these conditions to other people in a way they understand it’s not only associated with deficits but also with benefits. I like the last sentence of this definition in particular: http://sonnolenta.com/autism/
    Sadly, the rarer the condition, the less attention is payed. Autism occurres in about 1 of 100 people, 47,XXY occurres in 1 of 500 men and 45 XO (Turner syndrome) in 1 of 2000 women. You feel lost without a lobby argueing for you, and invisibility of a condition does not always help.

    Liked by 1 person

    • That’s really interesting about XXY men, because I was under the impression that Autistic, Deaf and Blind people were the only disability groups where people often have a preference for identity-first language. Perhaps XXY isn’t mentioned much on disability blogs because it’s so rare?

      I agree that calling autism a disorder is a value judgement. ‘There’s something wrong with you’ is an opinion, not a fact.

      Liked by 2 people

  2. I also dislike the person-first language, polite or not. You seem to discuss only the place of the adjective (or adjectival phrase) but, what about the substantivization of the very adjective?

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    • I’ve read a couple of posts by disabled people who are opposed to the use of mass nouns like ‘the disabled’, because it implies that the members of that group are all identical. (Eg here: http://disabledfeminists.com/2010/06/18/awp-the-disabled/) I can see why people would feel that nouns like ‘Autistics’ define people by their disabilities, because there is no word like ‘people’ that emphasises individuality and the possibility of traits other than the disability.

      Nouns are used to refer to identities other than disabilities, for example religion (‘a Christian’) and some nationalities (‘Canadians’). But saying ‘blacks’ or ‘gays’ sounds really inappropriate. I don’t know why some uses of nouns are acceptable and others aren’t.

      I don’t think referring to disabled people using nouns necessarily defines them by their disability, because using one noun to describe someone doesn’t always imply that other nouns don’t apply to that person too – calling someone a Christian doesn’t mean they can’t also be a Canadian or a vegetarian.

      I personally have no problem with ‘an Autistic’ or ‘Autistics’, because nouns like this are often used for identities that are seen as neutral, so the form of the language itself is not pejorative. And as I said in the post, ‘Autistic’ is not a rude word. But I know some people find ‘Autistics’ inappropriate or offensive, so I try to avoid saying it, and saying ‘Autistic people’ is just as good. I do say ‘autist’ though, and sometimes ‘aspie’, because I like them. I’ve never come across anyone who finds ‘autists’ problematic, but maybe that’s because it’s used less often than ‘Autistics’.

      Liked by 1 person

      • I think the problem could be singular vs. plural. Maybe I’m more used in my native language to substantivizate adjectives, Spanish, where I even use substantivizations not politically correct. So I am clueless about which adjectives are appropriately substantivizated and which not, but the examples you mention, gays and blacks, I strongly feel the need of an noun, may because the nouns I know (F and N words) are extremely offensive.

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      • Yes, I think nouns are more appropriate for describing individuals than groups.
        I don’t know any Spanish, but in English I say ‘Black people’ and ‘gay people’. I don’t know any nouns that are suitable. (Though I’m not a member of either group, so I’m possibly not the best person to comment on this.)

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  3. YES! I dont have autism. I’m autistic, and it affect the way I see the world, everything I say, do, and think. It contributed to many problems and good things in my life, many advantages and disadvantages. I live in spectrumland.
    Why is it ok to say he’s American/Irish/Italian, but not ok to say he’s autistic/I’m autistic? Why is it ok to say, ‘I’m an animal lover’ and not ‘I have a love for animals?’
    and I think in pictures too. so when I was a child, and one of the neighbors explained how the pipe ‘exploded’, I thought the house was going to go down in flames. I saw a neuclear explosion. Cant people say, ‘The pipe is torn?’
    I dont define myself by Asperger, but it is a large part of who I am, the good and the bad. It’s one of the things that define me.

    Liked by 1 person

  4. Funny how NAS decides what autistic people find hurtful. Do we get to have an opinion on it as well? I have autism as much as I have my gender or my nationality. I’m guessing part of the reason why we find some noun inappropriate and some appropriate also is down to the history of the respective language.

    Liked by 1 person

    • Quite. I expect there are Autistic people (people with autism) who prefer person-first language, but the NAS only respects their preferences and not the preferences of people who use identity-first, presumably because person-first language fits with the NAS’s own views on autism. (It’s mostly run by nonautistic people, though they at least have some Autistic people in positions of power.)

      Like

      • It seems the are sadly next none or actually no organisations which are run by a mixed group of neurologies. Sad world. Then again at least we have organisations run by auties 🙂 (i use auties as an umbrella term for everyone on the spectrum)

        Liked by 1 person

  5. Like gender and ethnicity, disability is one of the many characteristics of being human…Would you want to be known by one trait, like your medical diagnosis?
    Exactly. That’s why instead of calling me an Autistic white man, Kathie, you should call me a person with Autism, Caucasianness, and masculinity. Then once you’ve wrapped your lips around that mouthful a few times, you can start showing true respect by calling me what I prefer rather than that politically ‘correct’ nonsense you continue to misapply.

    Liked by 1 person

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