“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.
Only when people get to choose their own labels will we get anywhere toward building an equitable culture.
If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue.
I’m a disabled person, not a person with disabilities. Disabled is my identity.
Identity first language is common among social model self-advocates. When hanging out in social model, neurodiversity, and self-advocacy communities, identity first is a better default than person first. Every autistic and disabled person I know uses identity first language. The words autistic and disabled connect us with an identity and a community. They help us advocate for ourselves.
There’s a language gap between self-advocates and the institutions that claim to represent us. There’s a gap between parents and their #ActuallyAutistic and disabled kids. There’s a generational gap in the disability movement. This is confusing for those trying to be allies. The articles below offer perspective and advice on identity first and person first language from self-advocates. At the end, I collect tweets from autistic and disabled self-advocates in a Twitter moment. Witness and respect these perspectives.
But please realise this: when autistic adults offer their experiences or insight, consider listening. We do not speak for your child, but we’re not really all that different from them. Telling us we’re “not autistic enough” insults us and trivialises the hardships many of us have endured. Hardships that, yes, may be very different from what your child might experience, but hardships nevertheless. I’ve earned the right to label myself as autistic. It explains everything. It is not all that I am, but it defines so much of who I am.
And that is why, for me at least, the identify label comes first. That I’m still a person should be obvious.
When you excise a core defining feature of a person’s identity from their living, breathing self, you sort of objectify them a bit. And you make that core defining feature optional. Because it can be safely removed, and they’re still a person. Right? Well, a person, yes — but not the sort of person they know themselves to be. And not the sort of person you can truly get to know. Because you’ve denied one of the main characteristics of their nature, out of an intention to be … compassionate? Dunno. Or maybe sensitive?
Whatever the original intention, the effect is just a bit dehumanizing. And a lot of us don’t like it.
So, if you’re into PFL – person-first language – please reconsider before you use it regarding autism. Cancer is one thing. Plaque psoriasis is another. Autism… well, that’s in a league all its own. And I wouldn’t leave that domain for all the money (or well-intended compassion) in the world.
Though person-first language is designed to promote respect, the concept is based on the idea that disability is something negative, something that you shouldn’t want to see. After all, no one tells me that I should call myself a person with femaleness or a person with Jewishness. I’m a Jewish woman. No one questions that. Yet when I dare to call myself a disabled person, it seems the whole world turns upside down. That’s because gender and religion are seen as neutral, if not positive, characteristics. The idea of separating the disability from the person stems from the idea that disability is something you should want to have separated from you, like a rotten tooth that needs to be pulled out.
Disability is only negative because society makes it so. For sure, there are negative aspects of my disability. (For the sake of simplicity, I’m focusing solely on my physical disability, which is both the most visible and the most integrated into my being.) Chronic pain and fatigue are no picnic. But for the most part, my disability is just another thread in the tapestry of my life. Pull it and the whole thing might unravel. Pull it and you might get an ugly hole where something beautiful once was.
Identity-first language is founded upon the idea of the social model of disability. In a nutshell, the social model says that though our impairments (our diagnostic, medical conditions) may limit us in some ways, it is the inaccessibility of society that actually disables us and renders us unable to function. The most basic example is wheelchair accessibility. If I am using my wheelchair and I can’t go to a restaurant because it doesn’t have a ramp, am I disabled by my cerebral palsy or am I disabled by the inaccessibility of the restaurant?
If that restaurant has a ramp, I am able to function perfectly within that situation. I am able to go in, sit at a table, order my food, eat it, and pay, just like everyone else. My wheelchair is not the problem. The inaccessibility of the restaurant is. Saying that I am disabled more accurately highlights the complex biosocial reality of disability. I am not merely a person existing with a label; I am constantly disabled and enabled by the interplay of my body and the environment.
Taking a cue from the radical Deaf community, ANI members began to refer to themselves as “Autistic” instead of saying that they were people with autism. “Saying ‘person with autism’ suggests that autism is something bad—so bad that it isn’t even consistent with being a person,” Sinclair observed. “We talk about left-handed people, not ‘people with left-handed- ness,’ and about athletic or musical people, not about ‘people with athleticism’ or ‘people with musicality’ . . . It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person.”
In the case of “People First” language for those with disabilities , what we have is not belief in linguistic emancipation, but a desire to “change something” in order to make educators feel responsive. Special education services haven’t changed much at all in the past 40 or 50 years – we use the same deficit model, we use the same types of assessment, we still flail around with school-generated solutions which foster dependence – but we can see we have “evolved,” no retards, no cripples, no morons, hey “we’ve changed since the bad old days.”
But disability remains a social identity. To work from Tom Shakespeare, it is the intersection of ability and the social structure. There is no such thing as a legitimate way to define “normal.” After all, if there were, the bizarre global minority of humans without black hair and brown eyes would be considered freaks. So, society defines certain people as outside of normal, and they do that with words.
For some groups, the hyphenation strategy is reached, be it “Scotch-Irish” or “African-American” or even “Student-Athlete,” but for others, where a real belief in pathology remains, we keep the “person with” structure. A student with the swine flu. A student with cancer. A student with a learning disability.” We don’t hyphenate any of those because we do not accept them as cultural identities, rather, we view them as illnesses.
So call me “dyslexic,” and call me “multi-attentioned” (or something), but stop pathologizing me. I don’t “have” these things, I “am” these things, because your society has made it that way.
I believe that we have to challenge accepted strategies and ideas. And whether you call it “Normalism” or “Disablism” we need to understand how narrative impacts cultural belief. If we convert horrid prejudices into pleasant sounding phrases, we diffuse those prejudices as an issue. So, since you treat me as if I am “retarded,” please don’t hide behind your nonsensical, “Student with Learning Disabilities.” That language might make you feel better, but it does nothing for me.
As long as you consider one way of doing things “normal,” you will demean me and treat me as less than fully human. What I was trying to say in this post –in a way which would provoke conversation – was that the very concept of “accommodation” is so very wrong, because it is based in disablism – the belief that I and others are not, and will never get to be, “normal,” unless “you” cure me by making me like you.
“People-first” language is meant to divide, it is meant to demean, it is meant to dehumanize, it is meant to pathologize, and yet, it is meant, as I said before, to make its users feel good. In that way it is ultimately destructive because it covers up the crimes.
Only when people get to choose their own labels will we get anywhere toward building an equitable culture.
When ABA proponents tell parents that only several hours a day of relentless compliance training can “make us fit for society”, they are not seeing a person. They are seeing a problem, a defect. Yet they insist on Person First Language.
When we are abused, and murdered, the perpetrators don’t think we are “much more than autism”. They use Person First Language and forget our humanity.
Or maybe they are trying to beat, stab, suffocate or shoot “the autism” out of us.
When the media blame us for our own murders, by pointing out how “tragic” and “pitiful” our lives are, they use Person First Language to point out how non-persons we are. This is dehumanization.
When the media and some “experts” speculate that a mass murderer might be Autistic, they use Person First Language to say autism makes people evil. To them, that’s all we are.
Person First Language is not about “seeing a person before the diagnosis”, or about “seeing much more than the diagnosis”.
Person First Language is about putting as much distance between the person and “the autism”. It is the opposite of acceptance.
It is like a contest to see how many ways one can talk about Autistics without using the word “Autistic”.
This is how Person First Language proponents refer to us:
“Person with autism”
“Person has autism”
“Person on the autism spectrum”
“Person with a diagnosis of autism spectrum disorder”
Each time, they come up with a longer description that starts with “person” and ends with “autism”.
It would be much more inclusive, and respectful of our voices, to simply say “Autistic”. It is simple and direct. It does not waste words, it is easily understood. More importantly, it is the most accurate description of who we are.
In that wave of claiming who we are, from our perspective—in our proclaiming of what it is actually like to live as an autistic individual—many autistic self-advocates have embraced the word ‘autistic.’ In this way, we are not running from the degradation and falsehoods, but proudly proclaiming: “I am autistic.” It may seem counter intuitive. But indeed, the act of accepting the word “autistic,” in and of itself, makes something once untouchable—now held. For you see autism is not a disease—though many think it so, or at maximum treat autism like a plague to be eradicated.
The issue we take, in most circles of Aspergerians and Auties, is with the trials and tribulations parents face and share publicly in raising such “anomalies” (children with autism). Interestingly enough, if you listen with intent, you will note that the autistic parents of autistic children aren’t complaining publicly about the woes of being a parent of a child with autism. We aren’t declaring how hard it is to be a parent of a child with autism. Nor are we seeking sympathy. We understand what our child is experiencing. We understand the torment of living in a world, where you not only feel like you don’t belong, but are told from the authorities that be (parents included) that your condition, your being, your very existence has “affected” everyone around you.
I am defined by autism because I want to be, because by embracing my autism I am embracing myself fully. I cannot separate the way my brain works from the rest of me. I leave it up to my son about how he wants to define himself. I will never tell him how to perceive autism. I imagine his perception will be ever-changing.
I have not and will not proclaim my family was affected by my son’s autism; nor will I say my son is affected by the trials that come with autism. There is not some outside boogeyman disease, illness, or even condition making our life hard. Life is just hard, sometimes
When you use person-first language, you are literally separating me from my identity, deliberately distancing me from an integral aspect to who I am. It feels like someone is dissecting me.
There’s this idea that we’re given more respect if we separate our disability or disabilities from our personhood, that the more distance we place between ourselves and our disability, the more respect we’re given. This very idea is rooted in ableism.
Also important to note is that whether I’m called a Disabled person or a person with a disability, I am treated with the same level of disrespect.
When people continue to separate our disabilities from our personhood, they aren’t thinking about how our disabilities impact our personhood and how its viewed by others.
My friend Eb on Twitter worded it best, people shouldn’t need to use person-first language in order to be reminded that we’re human beings deserving of respect and rights and that we also have other identities.
I think that when people insist on saying “but you’re a person first!” and that people don’t acknowledge my disability first, that can lead to accommodations being an afterthought. When folks continue to separate my disabilities from my personhood, they aren’t thinking about what accommodations I need because they’re too busy trying to NOT think about my disabilities.
I don’t have autism. I am autistic.
That’s a thing I’ve been saying forfuckingever. And yet people keep insisting on pointedly saying that I and others “have autism”, are “individuals who happen to have autism”, are “living with autism”, or the ever popular “are individuals who just happen to have autism”.
Those are a lot of words just to deny a fundamental part of who I am, huh? It’s like people think if they wedge enough words between their identifier noun and the word autism, they’ll pry the condition off of us.
I know that y’all are taught person first language, and many communities prefer it and I support that. But the purpose of person-first language is to respect the person you are describing. Ask them what they prefer. I, and many MANY other autistic people, prefer to be called autistic, not “living with autism” or “having autism” or “an individual who happens to have an intimate neurological understanding from living with autism” or whatever.
I don’t have autism. I am autistic. This is important to me. It also doesn’t mean that I “see myself as a disability first and a person second,” whatever that is supposed to mean. In my eyes, I’m Julia. Just Julia.
I cannot separate out which parts of me brain are wired because baby I was born this way and which parts of my brain should be marked off as AUTISM. Nor do I particularly care, to be honest.
Being autistic fundamentally shapes how I perceive and interact with the world, with a million cascading and subtle consequences. I would not be the same Julia I am now without whatever parts of my brain can be marked as AUTISTIC (and that’s bad science in the first place, the brain is a whole lot more complicated and subtle than that, we know that there isn’t one gene or one wiring variation that leads to autism).
I am not flattered when you say that I don’t really see you as autistic or it’s just a label.
Because what you mean is that “I don’t really see you as Bad right now,” and while I am incredibly grateful for that safety, I am also furious that autistic means Bad at all in the first place and that I feel I have anything to be grateful for in that entire situation.
It is, indeed, just a label. One without nearly the neutrality of, say, Campbell’s Chicken Soup. All your wishing in the world won’t change that, and taking away the words I have for my experience just hurts me so you can feel a little more enlightened.
“Autistic”, or “with-Autism”? I had to decide this for myself quite some time ago, after a great deal of thought, since there are positives and negatives to both methods. Finally, it boiled down to one factor: communication. What does each say to the listener? What does each say to me? And to what effect?
There are basically three groups who would, sensibly, prefer person-first language for autism. First, those who want to appear to care. Person-first language implies that you don’t blame the person-with-autism for being they way he is. That you are presupposing that the autism made him do it – whatever it is – and everyone should cut him slack. However, it also implies that he will so certainly fail to behave acceptably that you want to get out in front of his failure and forgive him in advance. Person-first language protects this group from having to internalize the idea that people can be radically different, while still deserving complete acceptance as they are. Or it’s simply a shorthand for “you’re damaged and inferior, but we forgive you.”
Second, there is group that believes that autism is something you catch. Like a virus. Or that it’s the result of an accident that suddenly injured you. They believe that it is simply a matter of time and effort before you are relieved of your autism, and that you will be just like you are now – just with all the problems removed and the nice parts remaining. This perspective is generally the result of failing to accept that your child is not just a poor substitute for the “real” child you believe you deserve. Person-first language protects this group from reality.
Finally, of course, there are those who, for their own practical reasons, prefer to preserve the illusion that autism can be removed from a person like a stain, leaving a pristine child ready to please his parents and join mainstream society invisibly. Some of these people have created images of themselves as beacons of hope with many books and speeches and postings, some as cutting edge researchers into a cure or the cause, some as major movers-and-shakers in the industry who may – any day now – slay the dragon. Person-first language preserves the delusion these people succeed within.
In all these cases, person-first language is used to hide the truth. And in none of these constructs is the autistic actually the primary beneficiary of the charade. Person-first language used as a default by anyone but the autistic himself is always selfish.
And always demeaning. The overwhelming message of “person-with-autism” is always “we wish we could really remove the autism from you, because it’s offensive, and we’re sure you’d be more acceptable without it.” Of course, it can’t be removed. At least not in the near future. So, until then, the autistic is stuck with his unacceptableness, no matter how kind and apologetic the label appears to others.
When you use person-first language, you create and then highlight a failing, a disappointment, a limitation. When I declare myself as an autistic, I acknowledge my difference as an acceptable part of my self-identification at the outset, and challenge you to do so too.
I would argue that “person with autism” risks misrepresenting the nature of the condition. It implies that autism is an attachment, like a torn ligament or a brain tumour, which can be isolated and removed without otherwise affecting the individual, when to my mind autism is intrinsic to the person’s identity.
Another flashpoint is the word ‘suffering’. One of the surest ways to raise the hackles of the autism community is to write or say that somebody “suffers from” autism or Asperger’s syndrome. I’ve read and heard two examples of this in the last fortnight alone. There are two conflicting responses here: on the one hand it’s insulting to people who get by reasonably well although they have some form of autism, and yet on the other there are autistic people who quite evidently do suffer, and we shouldn’t shy from saying so. The key point, I think, is that while they may suffer from depression, from isolation, from short attention spans or from an inability to express themselves, saying they “suffer from autism” is aggravating to people who have worked hard to overcome the more debilitating aspects of the condition. It also puts a too simplistic gloss on the way people experience autism, since a strong adherence to routine can be comforting, and even rewarding, in the right context.
Source: Autistic Dad: On Language
Though it is common for medical and cure-focused communities to refer to an autistic person as a person with autism, such references are not the lingo of the greater whole of the Autistic Community.
In a nutshell, saying a person has autism may imply that the person is defective or that there is an inherent problem or sickness within the person. It also implies that autism can somehow be separated from the person.
Being a deaf person, as well as a member of the Deaf community, I prefer to be referred to as Deaf. This is preferable to me rather than the terms “hearing impaired” or “person who has deafness.” I don’t have deafness, I am deaf. For me, it is the same with autism. I don’t have autism, I am autistic. Since I do not view my deafness and autism as negatives, I use language that puts me in the direct light of both autism and deafness.
Source: Aspitude!: Autism-first Language
Saying “person with autism” suggests that the autism can be separated from the person. But this is not the case. I can be separated from things that are not part of me, and I am still be the same person. I am usually a “person with a purple shirt,” but I could also be a “person with a blue shirt” one day, and a “person with a yellow shirt” the next day, and I would still be the same person, because my clothing is not part of me. But autismis part of me. Autism is hard-wired into the ways my brain works. I am autistic because I cannot be separated from how my brain works.
Saying “person with autism” suggests that even if autism is part of the person, it isn’t a very important part.
Yet autism goes deeper than culture and learned belief systems. It affects how we relate to others and how we find places in society. It even affects how we relate to our own bodies. If I did not have an autistic brain, the person that I am would not exist. I am autistic because autism is an essential feature of me as a person.
Saying “person with autism” suggests that autism is something bad–so bad that is isn’t even consistent with being a person.
It is only when someone has decided that the characteristic being referred to is negative that suddenly people want to separate it from the person. I know that autism is not a terrible thing, and that it does not make me any less a person. If other people have trouble remembering that autism doesn’t make me any less a person, then that’s their problem, not mine. Let them find a way to remind themselves that I’m a person, without trying to define an essential feature of my personhood as something bad. I am autistic because I accept and value myself the way I am.
In the autism community, many self-advocates and their allies prefer terminology such as “Autistic,” “Autistic person,” or “Autistic individual” because we understand autism as an inherent part of an individual’s identity — the same way one refers to “Muslims,” “African-Americans,” “Lesbian/Gay/Bisexual/Transgender/Queer,” “Chinese,” “gifted,” “athletic,” or “Jewish.” On the other hand, many parents of Autistic people and professionals who work with Autistic people prefer terminology such as “person with autism,” “people with autism,” or “individual with ASD” because they do not consider autism to be part of an individual’s identity and do not want their children to be identified or referred to as “Autistic.” They want “person-first language,” that puts “person” before any identifier such as “autism,” in order to emphasize the humanity of their children.
Because when people say “person with autism,” it does have an attitudinal nuance. It suggests that the person can be separated from autism, which simply isn’t true. It is impossible to separate a person from autism, just as it is impossible to separate a person from the color of his or her skin.
Autism, however, is not a disease. It is a neurological, developmental condition; it is considered a disorder, and it is disabling in many and varied ways. It is lifelong. It does not harm or kill of its own accord. It is an edifying and meaningful component of a person’s identity, and it defines the ways in which an individual experiences and understands the world around him or her. It is all-pervasive.
Person-first language opponents believe the best way to do this is by recognizing and edifying the person’s identity as an Autistic person as opposed to shunting an essential part of the person’s identity to the side in favor of political correctness.
It is impossible to affirm the value and worth of an Autistic person without recognizing his or her identity as an Autistic person. Referring to me as “a person with autism,” or “an individual with ASD” demeans who I am because it denies who I am.
When we say “person with autism,” we say that it is unfortunate and an accident that a person is Autistic. We affirm that the person has value and worth, and that autism is entirely separate from what gives him or her value and worth. In fact, we are saying that autism is detrimental to value and worth as a person, which is why we separate the condition with the word “with” or “has.” Ultimately, what we are saying when we say “person with autism” is that the person would be better off if not Autistic, and that it would have been better if he or she had been born typical. We suppress the individual’s identity as an Autistic person because we are saying that autism is something inherently bad like a disease.
Yet, when we say “Autistic person,” we recognize, affirm, and validate an individual’s identity as an Autistic person. We recognize the value and worth of that individual as an Autistic person — that being Autistic is not a condition absolutely irreconcilable with regarding people as inherently valuable and worth something. We affirm the individual’s potential to grow and mature, to overcome challenges and disability, and to live a meaningful life as an Autistic. Ultimately, we are accepting that the individual is different from non-Autistic people–and that that’s not a tragedy, and we are showing that we are not afraid or ashamed to recognize that difference.
“Autistic” is another marker of identity. It is not inherently good, nor is it inherently bad. There may be aspects or consequences of my identity as an Autistic that are advantageous, useful, beneficial, or pleasant, and there may be aspects or consequences of my identity as an Autistic that are disadvantangeous, useless, detrimental, or unpleasant. But I am Autistic.
These are not qualities or conditions that I have. They are part of who I am. Being Autistic does not subtract from my value, worth, and dignity as a person. Being Autistic does not diminish the other aspects of my identity. Being Autistic is not giving up on myself or limiting myself or surrendering to some debilitating monster or putting myself down. Being Autistic is like being anything else.
Person-first language is a form of hypocrisy. Its strongest advocates are non-disabled parents and professionals, very well-meaning people who love their friends and family members and students deeply and who want to do right by them by treating them as human beings. But if a fairly large number of us to whom this type of language refers find it objectionable, why are we told “Well I respect your opinion, but I think person-first language is more respectful.”
Why is it culturally appropriate and typical to accept race, religion, and nationality as markers of identity that ought to be designated with proper adjectives that (in English) precede the noun “individual” or “person” and not those that fall under the category that we call “ability?” Is it a reflection of a secret fear of the non-disabled of people who are not like them, or is it a reflection of the inhibiting fear of offending one of us? As most of us prefer to identify with proper-adjective language (disabled or Autistic), using this language is highly unlike to offend. Asking me, “So you have autism?” will almost always produce a wince and a cringe. An identity is not something that I have. It is who I am.
Language around disability is complicated and there is currently no universally accepted term. Even the terms that are considered most acceptable like people with disabilities (in North America) and disabled people (in the UK) are not universally accepted by people in those locations. In order to be respectful it is usually inoffensive to default to the most acceptable term based on your location. However, if a person expresses an alternate preference, it is extremely rude and disrespectful to insist that they conform to the dominant preference. Best practice would be to utilize the term that the individual prefers.
The golden rule of disability language has been that the person should come first in phrasing, preceding the condition that disables them. For example, people who have diabetes aren’t “diabetics” in respectful usage but instead are “people with diabetes.” But developmental conditions and those related to the brain are a trickier territory. With a nod to Francis Crick, if your brain is you and you are your brain (with some guidance from your endocrine system and your environmental inputs), then how appropriate or even rational is it to separate the person and the condition? Many people want to say “person with autism,” but to a lot of autistic activists, that phrasing is silly, like saying “Person with Brain.” For them, autism and brain and themselves are all one and the same. Autistic activist Jim Sinclair wrote in 1999 about instead using “identity first” language. The Autistic Self Advocacy Network also features an essay by autistic activist Lydia Brown, elaborating the concept. That doesn’t mean, of course, that every autistic person prefers that phrasing, and it’s always best to go with what any individual with a condition expresses as their preference.
For anyone who has been around Autistic communities, or is Autistic themselves, one of the first things they may notice is the different ways in which we are referred to. Some will say, “has autism/person with autism/people with autism”, whilst others will say, “is [an] Autistic/Autistic person/Autistics”.
These descriptions cover two broad categories of language: identity-first language, and “person-first” language. In my blog (and outside of it), I pretty much entirely refer to myself as “Autistic”, rather than a “person with autism”. Some people wonder why I choose to “label” myself. These people have probably been taught most of their lives that person-first language is the correct way, and that anything otherwise is inherently disrespectful. This could not be further from the truth. I and many other Autistic advocates, particularly those who support the neurodiversity paradigm, use identify-first language. In fact, I, for one, see person-first language as disrespectful, demeaning, and ableist.
Something that I see a lot of well-meaning non-autistic folks say to their Autistic children, siblings, relatives, or friends, is “you are more than autism”, or, “you are not autism, you are still yourself”, or, “don’t let autism define who you are”. Many of these same people insist on using person-first language, because they deem it somehow superior.
Despite that these people mean well, and want the best for their children, these quotes, and “person-first language” are ultimately harmful and damaging: damaging to the child’s self-esteem, giving them the pressure to be “more than autism”, whatever that even means. It is also damaging to the rest of the Autistic community, implying that autism makes a person less. “Person-first language” was not created by Autistics to begin with.
The first claim, that Autism can be separated from the individual, is complete nonsense. Autism is the way our brains are wired. Autism shapes our perception, the way we see the world, as well as how we think and feel. A lot who talk about “curing” autism seem to forget that doing so would completely change who we are as human beings. We would no longer be the same person. Autism is SUCH an integral part of who we are, and to take it away, to take our minds and how we think away, would make us lose our personhood. Back when I used to hate who I was (again, because of people sending a subliminal message that autism is a bad thing), I thought back on what my life would be like if I was non-autistic. I realized that I would not be the same person at all. Sure, I may not have had some of the bad experiences I’ve had, but I would also not love the things I love, believe the things I believe, and I also would not have many of the skills and talents I possess; at least not to the same level. I would be a completely different, foreign person. I wouldn’t even recognize myself.
As many Autistic individuals have experienced, when I stopped hiding myself – when I no longer concealed the fact that I’m Autistic, and when I embraced that part of my identity, that is when I suddenly became a lot more confident in my abilities. I started to like myself, recognizing my strengths, while working on my shortcomings.
If an Autistic person asks me to use person-first language, I will respect their wishes and do so for them. However, we shouldn’t be teaching Autistic kids to distance themselves from their autism. We shouldn’t be telling them they’re “more than autism”. We should be telling them that they’re Autistic, and teach them to be proud of their identity and neurology, and celebrate who they are.
The neurodiversity approach has important implications when it comes to language. A lot of people (typically neurotypical people who are helping or caring for autistic people) support ‘person-first language’ to describe autism. This means referring to someone as a person before stating their disability, a “person with autism”.
You might have noticed that I do not use person-first language. What I use is called ‘identity-first language’. This means referring to autism as an aspect of someone’s identity, an “autistic person”.
People who support person-first language say that no-one should be defined by their disability, that they are a person before they are anything else. It sounds like a noble aim, and they generally have good intentions. The trouble is, the very idea that person-first language is necessary comes as a result of the medical model of disability. It’s bad to define a person by their disability if you think a disability is inherently a bad thing.
Identity-first language accepts that neurological differences and impairments are not inherently positive or negative, they are just aspects of a person’s identity. You wouldn’t dream of saying “a person with homosexuality”, would you? Because that implies that being gay is negative, as well as something that could even theoretically be separated from the person.
The neurodiversity approach says that being autistic is comporable to being gay. It’s an identity, and a natural and value-neutral aspect of human variation. And autistic people should be accepted and accommodated in the same way as gay people. If there are problems associated with being autistic (or being gay), like finding it difficult to communicate (or finding it difficult to get married) – those problems should be accommodated by society.
When you use person-first language, you are saying “Being autistic is entirely and inherently negative”, and “Being autistic makes you less of a person”, and “I have to be reminded that autistic people are human”. Please stop saying those things to us.
After more than 20 years, when I was in my mid-40s, I left Independent Living Center work, partly because I wanted to explore disability culture and activism in other ways, especially online. One of the first things I found was that in the 2010s, the most interesting disabled people out there said that they were “disabled people,” or just “disabled,” and called it “identity first” language. This was in direct opposition to “person first.”
I was relieved. “Disabled” is much smoother to write and say than “person with a disability.”
The more I thought about it, “identity first” language started to again change how I thought about my disabilities. I stopped worrying about whether or not my disabilities “define” me, and started to embrace the fact that like it or not, I am part of a community, a shared identity. I’m disabled. And I do like it.
There are strong links between language about disability and thinking about disability, both in my own life and in the broader disability community. As tiresome as it can be to keep up with all the ways of thinking about disability language, it helps describe and shape who we are. Today, I find myself more comfortable with my disability identity than I have been since childhood, and much more empowered and proud.
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.
I do know the history of PFL. I also know that it was co-opted by non-disabled people who believe they are the authorities in what we should say and how we should identify ourselves. And that is the definition of ableism.
“If you “see the person not the disability” you’re only getting half the picture. Broaden your perspective. You might be surprised by everything you’ve missed. DISABLED. #SayTheWord”
I want to debunk the notion that by using PFL society treats us better. If anything, it helps with the stigmatization of Disabled people. Instead of “seeing” us, society ignores us, we become “voiceless” and “invisible”. There: debunked. But there is more.
Do you, PFL proponent, really see me (only me) and not my disability?
If your answer is yes, you are being ableist because you ignore an important part of me. If you ignore my disability, how are you being an ally – as you claim – and how are you going to support me (and all Disabled people) when we demand to be heard?
If you insist that you will support us, and continue to use PFL, you are being ableist because I (and many others) already said that respecting us means listening to our preferences, instead of demanding that everyone uses a language that we reject. You make it all about you, your preferences, your choices. How is this respecting me (and all Disabled people)?
Acceptable to whom? This is the greatest example of PFL as ableist language. It is silencing. It says non-disabled people are the ones who know what is “better” for Disabled people. It says that we, Disabled people, are non-persons who cannot define ourselves. It makes the choices of non-disabled people for disabled people, “official”. PFL is not acceptable to me, and it is not acceptable to a lot of Disabled people. If you claim to be an ally, if you claim to use PFL because you respect us as people, you are NOT respecting us.
If you insist in using PFL because you don’t want to create “controversy” and defy the ableist society, if you use PFL because it is more comfortable to you, you shouldn’t claim to be an ally or advocate.
I’ll be damned before they separate me from my autism too. I’m autistic. I’ve always been autistic. There has never been a me before autism. All parts of me are autistic as hell and I wouldn’t have it any other way.
My autism doesn’t reduce me at all. My brown skin doesn’t reduce me at all. Ignoring these these parts of me do, because they make me myself. My autism and brown skin affects how I see the world and how the world sees and treats me. Neither my race or my autism are invisible to the world, I promise. They affect everything. Pretending that they do not matter means erasing the reality I am experiencing and that is dangerous to me. Until you see all of me, you do not accept or respect me at all. And if you don’t? Well, then I am likely to lose any interest in you.
Before I found out I was autistic, I wasn’t able to see myself clearly. I already knew myself like no other could, but I didn’t understand myself the way I do now. I didn’t have a community where I actually belonged. These things mean a lot to me, and because of them I am in a better place now. And it’s all because I learnt that I am autistic. Therefore, this label means a lot to me. I never want to be separated from it ever again.
Identity-first language places the disability-related word first in a phrase. People who prefer identity-first language for themselves often argue that their disability is an important part of who they are, or that they wouldn’t be the same person without their disability. For some people, identity-first language is about a shared community, culture, and identity. Identity-first language is also about thinking about disability as a type of diversity instead of something to be ashamed of.
Some communities that use identity-first language are the Autistic, Deaf, and Blind communities. Other people might use “disabled person” instead of “person with disabilities.” Specific people might refer to themselves differently than most members of their communities, so it is a good idea to ask a person how they identify if you are writing about them or introducing them.
Here’s a simple breakdown of IFL and how it’s used:
- “Disability” and “disabled” are indicators of culture and identity. Thus, “disabled person” is an accepted term.
- Within the Autistic community, IFL is widely preferred and often consciously chosen, because Autism is considered an identity. That is, you’d say “Autistic person” instead of “person with autism.” In this way, being autistic is regarded as a facet of one’s identity – a neurological state of being – and not as a source of shame.
- A similar line of thinking is followed by many who are Deaf. While some people identify only as little-“d” deaf (referring to a physical state of being), others capitalize the “D” to indicate being Deaf as a culture and identity. So, using the principles of IFL, one would say “d/Deaf person.
- These same concepts do not apply when it comes to the use of a term strictly for its medical definition. For instance, it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.” Here, you’re referring to a person by diagnosis, which is perceived as dehumanizing.
- Likewise when it comes to mobility equipment. It’s completely inappropriate to call someone something such as “wheelchair person.” (Sadly, I’ve been called this several times.) Instead, you would say “wheelchair user.”
Identity first: as in disabled person (as opposed to person with a disability) was originally conceived to challenge the medical view of disability and replace it with a socio-cultural view. It wasn’t people’s diagnoses that were the problem, it was society. Society was the main cause of disablement. Saying you were a disabled person was originally not about identity at all it was an acknowledgement that society was the predominant cause of barriers for people with impairments (see my post here for a more in depth breakdown of the social model of disability). It was a way of calling attention to society’s physical and social barriers by tying oppression to the term disablement.
I sincerely doubt that most people who use identity first language are doing so to constantly be saying “hey you are oppressing me” or “hey I’m oppressed” (even though those two statements are likely true). They do it for the same reasons I do. It is a way to reject the idea that disability is a dirty word and to say that disability can be a part of a person’s identity without sacrificing their humanity. It’s a pushback against the stigma associated with disability (for more see this piece by Emily Ladau).
I however, choose to use IFL to directly challenge the bigotry inherent in assuming that I must be separated from my body to be considered human. I most definitely don’t do it to pigeon hole my identity into one label. I am far to complicated for that, just like everyone else.
I continue to believe that people should have the right to self-label and I endeavor to respect people’s personal preferences because we have been labeled by others far to often and it is time for us to take over the conversation about our own lives. I will not however accept the idea that my choice in sentence structure means that I am limiting my identity.
Person first language arose because disabled people were being referred to by demeaning and pejorative terms that had an identity first construction. In some communities, where a preferred identity first term hasn’t arisen, person first is still the preferred construction.
Autistic people, however, have repeatedly expressed a preference for identity first language. For some reason, nonautistic people who think they know better continue to ignore our (loudly and oft-stated) preference. To those people I say, “If you truly believe we’re people, first or otherwise, then listen to what we’re saying and respect our preference.”
Autistic is not a dirty word. When you act like it is, you aren’t helping autistic people. You’re contributing the very stigma that you pretend to abhor.
Undoubtedly, scholarly writers’ use of person-ﬁrst language is well intended. Perhaps, scholarly writers’differential application of person-ﬁrst language to children with disabilities (and most frequent application to children with the most stigmatized disabilities) is also well intended (e.g. to effect positive social change, beginning with the individuals who are most stigmatized, or to protect speciﬁcally individuals who are the most stigmatized). However, the core principle of person-ﬁrst language mandates that persons with disabilities be treated, linguistically, the same way as persons without disabilities. Therefore, rather than avoiding linguistic ‘bias against persons or groups’ on the basis of disability, as the American Medical Association directs scholarly authors to do (2007, p. 412), scholarly authors may actually be imparting such bias. As numerous disability scholars have argued, person-ﬁrst language ‘may have overcorrected to the point of further stigmatizing disability’ (Andrews et al., 2013, p.237). By ‘call[ing] attention to a person as having some type of “marred identity”’ (Vaughan, 2009), person-ﬁrst language may do ‘the exact opposite of what it purports to do’ by signaling ‘shame instead of true equality’ (Jernigan, 2009); it may ‘reinforce the notion that it is “bad” to have a disability’ (La Forge,1991, p. 51)
What can authors, editors, professional organizations, and scholarly journals do to truly reduce linguistic bias? First, all parties can become better educated about the core principle motivating person-ﬁrst language: Everyone is a person ﬁrst, not just children with disabilities (and deﬁnitely not just children with developmental disabilities). As the American Speech Hearing-Language Association suggests, ‘do the same thing for both positive and negative attributes.’ Refer to all persons, both those with and without disabilities, with person-ﬁrstlanguage. Conversely, authors, editors, professional organizations, and scholarly journals could begin to embrace identity-ﬁrst language, both for persons with and without disabilities. Some disability scholars encourage the use of identity-ﬁrst language from a disability rights, equality, and diversity framework. In fact, identifying with a disability is empirically demonstrated to be associated with improved well-being, self-esteem, and quality of life for persons with a wide range of disabilities, which is why identify-ﬁrst language for persons with disabilities is often preferred. At the least, scholarly writing should endeavor to not use linguistic constructions that accentuate rather than attenuate the stigma associated with disabilities.
- I’m Autistic. Here’s what I’d like you to know.
- Education, Neurodiversity, the Social Model of Disability, and Real Life
- Equity Literate Education: Fix Injustice, Not Kids
- Design is Tested at the Edges: Intersectionality, The Social Model of Disability, and Design for Real Life
- structural ideology > deficit ideology
- Classroom UX: Designing for Pluralism
- Presume Competence: A Hippocratic Oath for Education
- Autistic Burnout: The Cost of Coping and Passing
- Autistic Empathy
- The Double Empathy Problem: Developing Empathy and Reciprocity in Neurotypical Adults
- Behaviorism, Compliance, and the Subversiveness of Autistic Pride
- Autistic Anxiety and the Ableism of Accommodation
- Neurodiversity and Unilateral Accommodationism
- Eye Contact and Neurodiversity
- Picking Floods, Picking Senses
- Navigating Autism Acceptance Month and Autism Myths
- The Gift: LD/ADHD Reframed
- Identity First
- The Segregation of Special
- Bring the backchannel forward. Written communication is the great social equalizer.
- Inspiration Porn, Growth Mindset, and Deficit Ideology
- Neurodiversity Library
- Interaction Badges
- Hidden Disability
- Ben Foss on Dyslexia and Shame
- Compassion is not coddling
- The Many Forms of Difference
- Neurodiversity and Gender Non-conformity, Dysphoria and Fluidity
- Bathroom Bills, Neurodiversity, and Disability
- Neurodiversity and Cognition Representation
- Harm reduction, addiction, tough love, 12 steps, neurodiversity, and the troubled-teen industry
- Transitioning from invisible to visible disability
- Atypical and Autism Representation
- An Actually Autistic Review of “To Siri with Love”
- Designing for Inclusivity with the Social Model
- We don’t need your mindset marketing.