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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Not high-functioning

Last week someone told me I was high-functioning. I expect being given a functioning label is something that happens to most Autistic people eventually, but this was the first time it’s happened to me and it came as a shock.

‘I’m not high-functioning,’ I said.

‘You don’t consider yourself high-functioning?’ she said. She knows I have problems with self-esteem; I imagine her waiting to reassure me I was very high-functioning. (Nothing like those other autistics.)

‘I hate that word,’ I said, which she accepted. But later I was angry with myself for implying that I did consider myself high-functioning but just wanted people to use a different word for it.

This is how I consider myself:

I can speak.

I have above average intelligence (as measured by academic performance).

I get more care and support from my parents than do most people my age, but I need less care than many Autistic people do.

I’m not high-functioning. I’m not low-functioning. I will not label myself this way.

Functioning labels are vague, inaccurate and unhelpful.

There are no definitive criteria for deciding whether to label an Autistic ‘high-functioning’ or ‘low-functioning’, but labelling is often based on whether someone can speak (note that lack of speech doesn’t mean lack of communication), or live ‘independently’ (ie as independently as the average abled person), or on IQ (although there doesn’t seem to be an agreed cutoff point between a HF IQ and a LF IQ; and note that IQ testing has an ableist history, and that autists’ language impairments can make IQ scores misleading). But speech, level of independence and IQ don’t all neatly line up: the fact that someone can’t speak doesn’t mean they have a low IQ; the fact that someone has a high IQ doesn’t mean they can live as independently as an abled person, and so on. When you say a person or group of people is HF or LF based on one of  the criteria, you imply that they match the other criteria for that functioning label. This is invalid and promotes stereotyping.

But, as Corina argued, in reality, people who don’t ‘look autistic’ get called HF and people who do look like a stereotypical autistic person get called LF.

Autistic people are so diverse that we don’t fit into neat categories, but this means that just saying someone is autistic doesn’t tell you a huge amount about their abilities and needs. A more productive approach than attaching a functioning label is to treat each Autistic person as an individual, and talk about their individual needs and abilities. This gives much more information than if you just say ‘HF’ or ‘LF’.

Functioning labels also fail to capture how our abilities vary over time and in different contexts.

Functioning labels imply that autism is a bad thing.

To me, if someone or something is ‘functioning’ it means it’s working the way it should do. And the people who get called high-functioning are those who are less obviously autistic or have milder autism-related impairments. Sometimes, ‘high-functioning’ is said like it’s a complement.

So HF people are only a little bit autistic, and they work the way they should, and that’s good.

(Autism is an essential part of me. It is not a bad thing.)

‘High-functioning’ is used to deny us support.

Many people (eg. on Square 8) have written about how when Autistic people are seen as high-functioning they are expected manage without support and accommodations, despite being disabled. Failure to do so is blamed on not trying hard enough. When you don’t ‘look autistic’ it can be hard to convince other people of how you struggle. ‘High-functioning’ creates unreasonable expectations.

‘Low-functioning’ is used to deny our abilities.

And Amy Sequenzia wrote that when Autistic people are seen as low-functioning it is often assumed they are incapable of thought or self-expression, and should be pitied, and that when they prove otherwise they are seen as exceptional. This attitude could result in people not being given the chance to show what they are capable of.

Functioning labels are used to silence Autistic people.

When Autistic people complain about what is said about us and done to us they are often told they are ‘too high-functioning’ to know what it’s like to be truly autistic, and therefore they cannot speak for real autistic people. Real autistic people are low-functioning and incapable of communication or even knowing what’s best for themselves, so they need other people – nonautistic parents and ‘experts’ – to speak for them. This is an effective way of shutting Autistic people out of discussions about things that are important for us.

That’s why I hate the term ‘high-functioning’.

Beyond wrong planet

For as long as I remember before I learned I was autistic, I’ve felt that I didn’t belong. Other humans were strange, unpredictable and often intimidating. I rarely made connections with them the way they always seemed to make with each other. I could tell I was different. I thought there was nowhere in the world where I fitted in.

After my diagnosis, the idea that I was born on the wrong planet came as a relief to me because it captured this feeling, that had hung over me my whole life but I’d never been able to fully express. And the wrong planet metaphor says I’m not a wrong person – it’s not that there is something wrong with me but that I don’t fit well with the rest of society.

The wrong planet metaphor is popular in books, websites and blogs, and I assume that this is because other people relate to this feeling too. But Autistic Bitch From Hell pointed out that when a minority group is seen as not fully human it makes it easier for people to justify prejudice and discrimination against them. When we publicly describe ourselves as being born on the wrong planet we’re probably unintentionally supporting other people’s attempts to dehumanise us and helping ableist attitudes to persist.

The wrong planet feeling lessened as I learned there were other people like me and when I met them online and in person. This makes me think that the wrong planet feeling is not simply something inherent to autism but is at least partly due to being in the minority. It makes me think it can be overcome.

It’s not surprising we feel like aliens when we’re surrounded by people who think differently from us, when we might not even be aware that people like us exist, and when people like us are not realistically represented in the media.

I’ve felt isolated by my mental illness as well. Like people with mental illness, Autistic people are disabled. This means that we live in a society that has not been designed to cater for our needs and our ways of being. That’s bound add to the feeling that we were born in the wrong place.

I think we should move beyond wrong planet, and treat it not as a truth about ourselves to be accepted but as something we should try to change. We can introduce Autistic children to each other so they know they’re not alone, we can teach people the truth about Autism, we can challenge disablement, and we should tell the world that Autistic people have as much right to Earth as anyone else.

I’m Autistic as well as aspie

A few months ago I discovered the word Autistic, with a capital A, and felt it was a word that truly fits me. As I understand it, capitalised Autistic is used to refer to identity, culture and community, whereas lowercase autistic refers to neurology. Along with lowercase autistic and autist, capitalised Autistic has joined aspie, Aspergian and spectrum as words I use to describe my neurology and identity. My diagnosis is Asperger’s syndrome.

‘You’re not autistic,’ said my mum. ‘That includes people who can’t speak.’

‘Are you aware,’ said someone else, ‘that some autistic people have much greater communication difficulties than you do?’

Asperger’s syndrome is a variety of autism and is acceptable to them, but plain, general autism is not. This doesn’t make logical sense to me.

Autism carries a greater stigma than Asperger’s does, and I fit the public perception of autism (a rocking, screaming, tragic child) even less than I fit that of Asperger’s (an awkward, male maths genius).

‘Autistic’ is a word that encompasses a wide range of language abilities, communication styles, sensory sensitivities, stimming needs, and social styles and abilities. Just as ‘English’ describes a group of people of many ethnic backgrounds, from many different counties, with different values and religions. It would be silly to say to an English person, ‘You’re not English – you’re different from these other English people I’ve heard about.’ We are diverse, but the things we have in common make it worthwhile to use the same word for all of us.

‘Autistic’ feels more natural to me than ‘aspie’ and ‘Aspergian’ do, because I see Asperger’s more as a diagnostic category than something inherent to my brain. People diagnosed with Asperger’s can describe themselves as Autistic as a sign of solidarity with all Autistic people, including people with other autism spectrum diagnoses. ‘Autistic’ feels like I’m part of something bigger, not just my little bit of the spectrum. And I like the extra shade of meaning capitalising Autistic brings, and how it reflects that there is more to our experiences as autistic people than just neurology: we’re Autistic together, and with pride.

 

See also The Problems with “Asperger’s” by Lydia Brown