Tomorrow Is Too Long to Wait for Inclusion

Why Person-First Language Doesn’t Always Put the Person First

Why Person-First Language Doesn’t Always Put the Person First

I vividly remember the first time I learned about person-first language (PFL). I was listening to a professor of special education speak to a group of students on disability “etiquette.” He handed out a sheet with rules on how to address or refer to a person if they had a disability. While lecturing, the professor seemed keen on calling me out, making me feel like a token, and prompting me to agree that when it came to disability, it was PFL or bust. I went along with it, but something didn’t sit well with me. I was born with my disability. It was news to me that calling myself a “disabled person” was an insult. It had always been just a fact of life, a part of who I was. And now, after all these years of calling myself what I am, here was an educator, who doesn’t even have a disability, telling me I had it all wrong.

At first, I shrugged it off, but I began encountering more and more people who proclaimed that PFL is the only way to show respect. So, I decided to dig deeper. And as I became more involved with a wider range of people from within the disability community, I discovered that PFL is not the only way.

There are two main types of language used to refer disability: person-first language and what is known as identity-first language (IFL). PFL as a concept originated among people who wanted to fight back against stigma. In a society that perceived disability as dehumanizing, advocates wanted those around them to remember that having a disability does not, in fact, lessen your personhood. As such, the PFL movement encouraged the use of phrases like “person with disability,” “girl with autism” or “boy who is deaf.” In speaking this way and putting the person first, it was considered a show of respect.

PFL was adopted as a general linguistic rule, moving from use by the people who initiated the movement towards heavy use by those in professional spheres. It essentially became the law of the land. Teachers, doctors, nurses, social service professionals, government officials… everyone was told that they should use only PFL. Using a term such as “disabled person?” A cardinal sin.

However, as with almost any major activism movement, PFL sparked a countermovement, known as identity-first. IFL is a linguistic concept embraced and actually preferred by countless people within the disability community. In the ideology of identity-first, “disabled” is a perfectly acceptable way for a person to identify. Instead of going out of your way to say “person with a disability,” when using IFL you would instead say “disabled person.” This is how I personally choose to identify myself. I am a disabled person.

And yet, non-disabled people largely tend to greet the idea of IFL with confusion or even anger, deeming it offensive to call someone disabled. I can’t even begin to tell you how many people I encounter who question my language choice. I realize I can’t blame them entirely, because PFL is all that many people know. It’s drilled into people’s minds, often in the form of generally well-intentioned sensitivity trainings and educational literature, as the only possible means to be respectful. But I just can’t get on board with this belief that person-first is the only way.

Consider how PFL intentionally separates a person from their disability. Although this supposedly acknowledges personhood, it also implies that “disability” or “disabled” are negative, derogatory words. In other words, disability is something society believes a person should try to dissociate from if they want to be considered a whole person. This makes it seem as though being disability is something of which you should be ashamed. PFL essentially buys into the stigma it claims to be fighting.

Also, would you ever make a point of describing someone by saying something like, for example, “a person who is Jewish” or “a person who is Asian?” Or would you just say “He’s Jewish,” or “She’s Asian?” My guess is you wouldn’t give descriptors like these a second thought. They’re not offensive words and there’s no implication of deficiency. They’re just facts about a person. Why isn’t disability treated in the same way? Disability is a state of being, a fact of life. It’s not a dirty word.

Furthermore, for so many people, “disabled” is so much more than a descriptor. It is an identity and culture unto itself. It is a source of pride. So, I am disabled. I am disabled just as much as I am a brown-haired, brown-eyed, glasses-wearing female. It is part of me. It is part of who I am.

I would be remiss if I didn’t note that IFL comes with its own set of “rules” that perhaps make it more difficult for people to fully embrace or accept.

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.”

On the whole, IFL isn’t actually as complicated as it seems, and its very existence is proof that language is never “one-size-fits-all.” But so many people – usually people who are not disabled – continue to demand use of PFL and correct others who do not use it. I notice this happening constantly. For instance, I’ll read articles focused on crucial issues affecting the disability community, and then I’ll read comments saying things like “great article, but how come you didn’t use person-first language?” It makes me wonder if people really think that the particulars of language are bigger than the true injustices or victories experienced by the disability community.

Moreover, if you are staunchly in the camp of PFL, I urge you to consider why constant insistence that PFL should be used may actually make some people feel disrespected, as though you are denying their identity. It is no one’s place to dictate what type of language rules a person should use, let alone what the entire disability community should use. If I encounter a person who prefers PFL, I will call them a “person with a disability.” If I encounter a person who prefers IFL, I will call them a “disabled person.” And if they have no preference, I may switch back and forth. I also switch back and forth in my writing from time to time so as to acknowledge both ways of identifying. This, I believe, is among the truest forms of disability acceptance.

Ultimately, the key is to ask, whenever possible, how a person chooses to identify, rather than making assumptions or imposing your own beliefs. Each person’s relationship to language and identity are deeply personal, and everyone’s identity choices are worthy of respect. I, who proudly chooses identity-first language and identifies as a disabled woman, am worthy of respect. Being who you choose to be – who you are – is something no language rule should ever take away.

Photo Credit: Michael W. May/Flickr

Do you prefer person-first or identity-first language? Do you think one is better than the other? Tell us in the comments section below.

The following two tabs change content below.
Emily is a passionate self-advocate who recently graduated summa cum laude with a B.A. in English from Adelphi University on Long Island, New York, where she was born and raised. Using her love of writing and communications, she is just beginning her journey on a career path towards creating positive change for the disability community. Emily blogs at Words I Wheel By where she writes about her experiences as a disabled 20-something and explores disability rights issues. She loves connecting with people, and invites you to like Words I Wheel By on Facebook and follow her on Twitter @emily_ladau.
  • Dmarcotte

    Thank you so much for this article. As a freelance writer who writes a lot about autism and college I am frustrated with the people who seem to focus on the language I use and not on the content of the article. I really like the idea of using both within the same article.

    • From one writer to another, know you’re not alone in that frustration. I’m so glad the article resonated with you and that you found a suggestion that might work for your writing!

  • RickH

    Emily, this is a great post.

    As a writer and dad of a kid with Down syndrome, I’m also very interested in how language intersects with disability, and I also believe that the simplistic rules for the words we use can fall short or even backfire. I just wrote an article that you might find interesting:

    I argue that we should have defended “mentally retarded” since it is, as you put it, a state of being and not a dirty word. Instead, we let others turn it into one.

    As a writer, I like to say that first you have to learn the rules of language, and then you learn which ones are okay to break. I’m glad you’re willing to question the rules. I look forward to reading more from you.

    • Rick – I hear you! So interesting how the connotations of words change from descriptors to insults. Thank you for sharing your piece with me.

  • SLJ

    Excellent! Thank you! I particularly love the breakdown of IFL. I was trying to explain those nuances to someone earlier but could not do it eloquently (or clearly) like you did.

    Mostly I get upset when people “correct” our own choice of words when referring to ourselves.

    If you’re going to focus on terminology, *at least* listen to the desires of the group the terminology refers to.

    • That means a lot! Thank you! Language is so nuanced, it can make my head spin! And you’re spot on – listen to what the people want 🙂

  • Sharon David McCart

    Excellent article! I think it does get confusing to many people and this makes it very clear! I have been called out for saying “A person who is autistic” which I started using sort of as a compromise. It was as if “autistic” was a derogatory term. Why should it be?

    • I’ve often felt some people perceive disability terms to be derogatory, and that’s always been something I aim to clear up whenever possible, so I hear you, Sharon!

      • Sharon David McCart

        Thanks, Emily! I feel caught between people who want to be correct and the people who actually have the disabilities. The advocates who want to speak “for” others compared to people who actually speak for themselves. Oh dear.

    • Coral Getino

      “The autistic”, “the disabled”, as a group qualifier sound terrible.

      • Sharon David McCart

        I have friends “with autism” who think putting it that way sounds terrible, comparing it to saying that “I am a person with a suitcase.” Some of them refer to themselves as “autists” which I think sounds terrible, but people have a right to refer to themselves in whatever way they choose. I think when we, as a society, changed from referring to African-Americans as “black” instead of “colored”, there were people who thought the new term sounded terrible. And yet it was time to listen to what people themselves wanted instead of what the rest of us thought it sounded like.
        I appreciate your sensitivity, though. I don’t ever want to label anyone with a single descriptor when none of us fit into a box.

      • KateGladstone

        Why? Talking about “the French” or “the British” doesn’t sound terrible.

  • Jane Strauss

    Anyone who needs to use PFL to remember I am human has far worse social interaction issues than any autistic person I know!

    • This is a really interesting perspective, and I’d say amen!

    • KateGladstone

      That’s one of the reasons I call PFL “Pointing Fingers Language” — also, I call IFL “Inclusion-First Language.” (I don’t use the word “identity” to describe any of the ways in which I fit into the same category as someone else. As I see it, my identity is _mine_ & does NOT belong to any group.)

  • KELLY C George

    Thanks for putting together this thoughtful explainer! I hope I get to use it in the classroom. Best wishes.

    • That would be a true honor, Kelly. Thank you for taking the time to read and consider.

  • Diana Zeitzer

    Hi Emily. Thank you so much for this! I too was always lead to believe that person-first language was the “only” way to be respectful, but have been seeing more and more lately about identify-first language. I think it’s an important discussion to have. The hard part, in my opinion, comes when writing about people with disabilities/disabled people, since it’s not really possible to know what every person reading the blog post/article will prefer. Our guidelines for Disability.Blog state that we use person-first language, unless the blogger is referring to his/her self and chooses to use identify-first language. On the rare occasion when a guest blogger has failed to use person-first language when referring to others with disabilities, we have received comments saying people found the non person-first language to be offensive. I remember one person in particular objecting to the term “asthmatic” instead of “person with asthma.” I think this is such an important discussion and appreciate you writing about this very important topic!

    • Diana, thank you for such an open, honest reply. I think guidelines can be helpful at times when it comes to style guides, and I’m so glad to hear that Disability.Blog guidelines keep things open for people to choose their identifying language!

  • Cindy Wright

    Thank you so much for this post! My husband has a traumatic brain injury, and we operate a small non-profit aimed at helping others with TBI. I found you because we are engaged in an active discussion over the wording of our mission/vision statements…we were asked to modify them to PFL and I am currently resisting.

    The idea of the adjective “brain injured” as a state of being and source of pride resonates with me, although the IFL breakdown you listed perhaps places TBI in the medical definition category? Or maybe in an in between sorta “no man’s land”.

    Although my husband has never been offended by being called a brain injured person (and is in fact very proud of how far he has come), we are conducting an informal poll of our own to see what others in our circle think. So far, the therapeutic community is firmly in the PFL camp — as is the APA manual (sec 3.15, believe it or not). So, as we are seeking funding for our project through writing grant proposals, we may be forced to change anyway so to avoid making readers shudder with our insensitivity 🙂

    It’s very interesting debate.

    • The debate is always so interesting to me, Cindy. And it seems you’ve dug deep into it! In certain professional situations, I use PFL exclusively when asked, but otherwise will switch back and forth.

    • Eventide Parfait

      I’m finally finding people like you… How did I miss y’all!

  • My sons who are both on the autism spectrum prefer person first language. That is what I go with. In fact, my oldest doesn’t care about his autism as an issue, never even uses it to describe himself, and the younger one sees himself as having aspergers but it isn’t all that he is. Neither describes themselves the way this article insists they do. I always wondered who are these self-professed overseers of the community who have decided how my sons are supposed to see themselves. These autism poopahs forget one major point: that as human beings autistic people are entitled to describe themselves anyway they see fit and they don’t need others permission, either NT or autistic, in order to do it.

    • Elise, this is exactly my point and you’re right on that people cannot dictate how other people should see themselves. The goal of this article is not to insist anyone identifies a certain way, but to insist there is no one right way to identify.

  • Kristen Bellows

    Brilliant post! My professor taught PFL in my Working with Children Who Have Special Needs class. I am on board with it until I know someone’s identity. I always tell people to ask someone how they identify. I use to use PFL on myself because my identity is seen as dirty. I will though say it loud and proud that I am a Mad person, a Borderline and that I am Crazy. Nothing dirty about it! It’s who I am!

    • Kristen, this is so important and I’m with you – I’m on board with however someone identifies.

  • Susan

    Thank you so much. I came to this party late in life, as I was diagnosed at 58 years old, last year so that I could get school accommodations. And even though I had self diagnosed the professional concurrence helped my life finally make sense in a deeper way and I was thrilled to have community and I proudly self identified as an Autistic/Asperger person and have been confused to no end by all the corrections coming at me. I finally understand. I am also a person recovering from TBI so I get hit both ways, as I have used TBI recovering person also, since this is such a long term thing and such far has had lingering effects.

    • I hear you Susan. It’s always confusing to hear how you view yourself be corrected.

    • Eventide Parfait

      Susan? I was thought to be autistic and inattentively disordered not long after starting college. The reality was, I was hiding a TBI due to self harm, and not wanting to be forced out of college by my parents. The Autistic community passed on their love of IFL to me, and I have had a fun time trying to figure out IFL for TBI. The self acceptance to say, “I’m brain injured,” hasn’t fully turned up yet, but I’m working on it.

      • KateGladstone

        Try “I’m neurologically injured” — it gets the point across.

  • Austin Waite

    Brilliant Article Emily! I am a person who has Cerebral Palsy and I’ve always been a fan of PFL. And now after reading your article IFL makes a lot of sense! I do have a sincere question…since IFL prefers “Autistic person” instead of “person with autism.” how would IFL describe someone with Cerebral Palsy? Because like you said “cerebral palsy person” seems so dehumanizing.

    • Austin, thank you! I think this is where it’s important to acknowledge that hard and fast “rules” don’t always work. In general reference to disability, I might say “disabled person,” but when it comes to CP, I’d say “person who has CP” or something like that. That’s where I find PFL comes into play.

    • Eventide Parfait

      Cerebropalsic? If there isn’t a word, coin one!

    • KateGladstone

      Well, in medieval/Renaissance/early modern English there was the word “palsied” meaning “paralyzed” (it’s “palsy” plus the “-ed” ending: the word “palsy” is a shortened pronunciation of the word “paralysis”) — so today we could talk about “cerebral palsied people” if that is all right with them.

  • Dan Vander Plaats

    I don’t agree, Emily. Sorry. IFL and PFL fall short in the same way – they are shortcuts to the ‘correct way.’ But they aren’t the correct way. The right way to talk about someone is to know them, to humble ourselves before them, and “in humility value others above yourselves” (Philippians 2)

    • Dan, your comment does confuse me a bit, as my whole argument is that there is really no “correct way.” I agree the most important thing is to know a person for all they are, but all connections begin with preliminary interactions, and to respect a person’s preferences *is* to value them.

    • Jane Strauss

      Hey, call people by our names. But, failing that, if one needs to reference our disabilities, call us in the manner in which we prefer to be called.

      And I find your quoting the Christian bible, which is irrelevant to the discussion, offensive.

    • KateGladstone

      And how does/should that “right way”/attitude manifest itself in language? If you want to use Bible quotes as an authority in discussions of language, Proverbs 18:21 tells us “Life and death are in the power of the tongue” …
      I am unChristian, but Christians (such as yourself) can also note James 3:2-12 going into great detail on the power of the tongue.

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  • Carlton Anne Cook Walker

    article. As it points out, one thing that is so insidious about person-first
    language is that is robs the individual of the right to self-identify. My
    daughter identifies as a “blind person,” but her teachers insist on
    calling her “visually impaired.” (She is NOT impaired — she is
    bright and creative and talented and blind.) Funny, I’m guessing no one would
    argue with a person wanting to use (or not wanting to use) a term like
    bi-racial: “No, you’re not an African-American, you’re bi-racial.” but,
    somehow, they have no problem trying to take away my daughter’s right to
    self-identify. Maddening!!

    • I hear you! This sort of exploration of language and identity definitely isn’t limited to disability. If someone calls me something other than my preference, I won’t hold it against them, but after several times of me asking to be referred to a certain way, if they still don’t respect that, then it’s definitely frustrating.

      • hsmom3

        I guess if it’s someone you interact with repeatedly, that’s one thing. But again, it’s pretty self-centered to expect someone else to remember how you choose to refer to yourself. Hopefully they will pick up on the clues during your conversation, but don’t let it get to you if they don’t. They most likely didn’t wake up this morning thinking of how to make you think less of them.

        • I can see where it may seem self-centered. Of course, the most crucial thing is to convey respect, even if you don’t match a person’s language preferences.

        • Carlton Anne Cook Walker

          Actually, the problem occurs most in her IEP (individualized education plan) meetings with educators who have known and worked with her for years. Despite her polite, but persistent, requests to be referred to as a “blind person,” these “professionals” feel the need to “correct” her.
          In stark contrast, friends, familiy, peers, and total strangers tend to accept her self-identification. I believe this says a great deal about the way the “professionals” view her — and how little respect they give “individuals with disbilities.”

    • hsmom3

      ummmm, but her vision is impaired. No one said that she was impaired, they said that her vision is impaired. She can identify herself however she wants but it is a bit presumptuous and self centered to think that everyone who interacts with her should remember how she wants to be referred to and that she is the only or most important thing in their world. THAT is maddening. She’s taking away the rights of others to use a very valid term.
      If someone refers to themselves and African/Caucasian American and someone else calls them bi-racial, I highly doubt that they would be offended.

      • Lune

        She’s taking away the rights of others to use a term about her that she personally finds demeaning?


      • Carlton Anne Cook Walker

        Her vision is impaired, as opposed to that of an individual with typical vision, but she identifies as BLIND. “Educators” who work with her deem it appropriate to “correct” her self-identification. My child is blind. Period. No one has the right to try to rob her of her right of self-determination.
        Again, let’s take disability out of it. Would it be appropriate for a teacher or a principal to constantly “correct” a child who says, “I’m black.” but stating, “No, you are bi-racial.” How many television cameras would be in the school’s parking lot within 24 hours?
        I find it offensive for people to rob individuals of the right of self-determination. Respect for others is a far, far more important quality than is the policing of “proper” language — by indiivduals to whom the terms do not even apply.

  • Jane Strauss

    The person who is being really derogatory about we “poopahs” who choose identity language is all very well …if her kids choose person first, great, but the point is not to argue with anyone what they choose to call ourselves.

    • KateGladstone

      If her kids _don’t_ choose “Person-First Language” (or, as I call it, Pointing Fingers Language), she will probably make them wear those repulsive “awareness T-shirts” that say “Don’t call me am autistic child, because I’m a child with autism.”

  • cos

    Hi Emily, I prefer IFL The National Autistic Society recently did a survey & decided it’s too close to call. Most autistic people preferred IFL but most professionals prefer PFL, which made it quite and even result. Many of us autistic people think the NAS should not have included professionals in the survey, or given their preferences as much weight as ours. According to the NAS, if we are in the room with professionals, they can call us what ever they like. I believe it’s up to us what we are called and up to professionals to respect that.

    • hsmom3

      How on earth do you expect everyone to know how YOU want to be referred to?

      • cos

        It is the NAS, not me, who said most autistic people who responded to their survey prefer IFL and the NAS who say that everyone should be called what they want to be called, whether that is PFL or IFL. I am autistic, so I call autistic people “us”. According to the NAS any of “us” have the right to be called “people with autism” or “autistic people”. You are quite right when you ask “How on earth do you expect everyone to know how YOU want to be referred to? ” I keep asking the same question of the NAS, but they refuse to answer. How would you solve that problem?

      • People will come to know in time how certain people prefer to be referred to, but of course people can’t be mind readers! And certainly everyone has different preferences, and all deserve respect.

      • cos

        “Most” means more than half, so it’s a default position. There is no problem with my logic. If you are referring to a person, you begin by using the most usually accepted form of address. Then if they prefer something else, they can then tell you.

    • Rosella Altman

      I think it’s telling that the split is mostly between autistic people and those hired to support them. In an ideal world, the professionals would be taking their cue from the people they supposedly support.

  • politicaljules

    There is nothing wrong with PFL. I have a daughter with Down syndrome, so the name is near and dear to my heart. But something the disabled author fails to mention, is the affect on new parents PFL can have.

    When my daughter was born, like many parents we were devastated, scared and cried a lot. Then people started to gently remind me, ‘she is your baby girl first. Not a disabled baby. Just your baby given to you with love and adoration.” That turned around my thinking in a great way.

    At first our delivery room was like a funeral. People walked in crying about this disabled invalid that was just born. My sobs and anxiety only got worse. But when we turned it around and asked people see her as a baby first, things changed. We started to see nothing but congratulations and flowers. She was a beautiful baby and would be celebrated as a baby with all the fanfare that every other baby has. THAT is what PFL can do.

    I do not agree with this disabled author at all. I think her views will only hurt and not heal. (yes I used non PFL on purpose).

    • Eventide Parfait


      She says, you (and your daughter) should have a choice. Choices are good. Choices are respectful. Having PFL as a choice isn’t strictly bad, in light of what it’s done for you. But, it only harms to restrict the choice to the sometimes condescending (perhaps more condescending than not) PFL.

      I think think that your very last line was also very hurtful. The rest of your post is great and shows your need for PFL, but there is nothing good at all about your last paragraph. It’s just as restrictive and potentially hurtful as saying we should only use IFL. Sorry!

      –A girl who needs her disability pride and the things that go along with it, like IFL.

      • politicaljules

        Hurtful to say I do not agree? That makes no sense.

        • Eventide Parfait

          No, the bit where you said her views will only hurt people. It’s kind of like the idea of offering a choice is a bad one, which also makes no sense.

          • politicaljules

            What I am pointing out is that we do have a choice. One choice is more hurtful than the other. Using non-PFL language is more hurtful and thus people prefer to use PFL language.

          • Eventide Parfait

            Using PFL language hurts me more than using non-PFL language. Using language against an individual’s preference with them is what hurts the most. Everybody prefers whatever language hurts them least, and sometimes, that is non-pfl type language.

          • Jane Strauss

            Nope, we do not. People who think our disability is bad, and less than , prefer PFL.

        • Jane Strauss

          And if your daughter later decides to adopt IFL, will you insult her by telling her it is hurtful? Seems pretty disrespectful to me. (Says this diagnosed-at-53- with 5 kids and a hubby on the spectrum – Autistic person)

      • KateGladstone

        People mean many things when they say “disability pride,” but I do not accept/use “pride” as a label for any of those things. Pride is rightly taken in what one has achieved or accomplished or chosen, not in what one has inherited or received by accident.

        • Eventide Parfait

          Unless one chooses one’s disability, and also chooses what they do after that. I feel accomplished that a beloved authority figure encourages and is proud of the products borne of my injured brain.

    • Anonymous

      Why did you use non-PFL on purpose if you feel that PFL is “more respectful” and don’t agree with her? …actually, don’t answer that.

      I feel very sorry for your daughter that her mother had to be reminded that she was a baby and not some monster child, and that she needs to consistently use such language to remind herself lest her daughter be rendered monster once more. Like, Christ, the birth of a child is always a beautiful thing, and it makes me sick to my stomach that people were crying because the baby you gave birth to wasn’t perfect. No human is perfect.

      See, the thing is the people who push for PFL the hardest are the parents of disabled children and the academics who deal with them. And I don’t think you get a say at all. I don’t care who you gave birth to, if you don’t have the disorder you don’t get to decide what is respectful to the community. You should be more concerned about what the community prefers than what you prefer. If you’re not, then you’re not being respectful no matter what language you use. This is especially important in the case of Down’s Syndrome, where individuals who have it are often seen as incapable of forming intelligent, cohesive thoughts.

      That’s another, thing, too — while parents of children with disabilities struggle in their own ways, and that needs to be acknowledged, they often like to make their struggles eclipse that of their children. Your struggles as the parent of a disabled child will never be tantamount to theirs. You will never be discriminated against the way they will be. You will never have your opinions dismissed summarily by a person not part of the community (the way you just dismissed the author’s opinions). I hope you bear that in mind going forward: you are not a more important advocate in the disability communities than your daughter; you do not struggle as hard as she does; your opinions about her disability do not matter as much as hers do.

      • politicaljules

        Actually I am the most important advocate in my daughter’s life, but apparently you have a very twisted view of parents with children who have Down syndrome. And it is pretty offensive.

        • So Anon. and others have just explained that your daughter’s voice should be foremost, and you have repeatedly asserted that your voice is more important than hers.

          And you wonder why the disabled community has a problem with that? The people who have the most important voices of advocacy for any disability are the people with that disability. Not their parents, teachers, physicians, therapists. The most important advocate, the person that we should always listen to first, is the self-advocate.

          The disabled community have been repeatedly spoken over by parents who don’t share their disability. Often by their own parents. No surprise that they’re annoyed when you claim your opinions are more important than your kid’s.

          Or would you like your mother to have more say about your life than you do just because you came out of her uterus?

      • politicaljules

        Please refrain from the personal attacks anonymous. It is really bad form to attack someone just because you have a difference in opinion. You do not know me or my daughter and you did not read my comment carefully enough to see that it was I that asked others not to see my child as an invalid because that is how society first reacts. And PFL turned that situation around. It turned it around for the rest of the people who needed to see her as a baby and not walk in our delivery room all depressed and sad.

        I am not the first parent that had this happen, and I wont be the last. We are privileged to be chosen to parent this beautifully bright loving gift that is our daughter, and we take that responsibility very seriously. I will protect her from people who say things like you because your hateful words do so much more harm than good. And your attitudes are not from a loving society that gives support and embraces these children and their families. You should never be allowed to say what you just said to me about my child.

        I advocate for her every single day. I have gone to court and won big cases against school districts who wanted to see her as an invalid. We are changing the course of history for children like my daughter, and you think it is funny to say I have no right to do that?

        Shame on you Anon. Your views will only hurt the community and keep children locked away. When you assume that a loving family of a child has no say in helping to advocate and raise concerns when they need a voice, you are a big part of the problem. Attacking that child’s mother is a heinous and cruel act and your words drip with hatred that I have yet to see from another person. No wonder your name is Anonymous. Seems a bit cowardice to me.

        • Anonymous

          “No wonder your name is Anonymous. Seems a bit cowardice to me.” Yours is politicaljules. Do they just call you Jules in your family, or Political?

          What did I say about your daughter that was offensive, exactly? That she wasn’t perfect (like all other humans)? That people with Down syndrome are seen in society largely as being incapable of forming a cohesive thought? If the second part was what upset you, it’s certainly not my view — it’s an ugly view, and it’s largely society’s view. It’s the sort of view that prevents a young woman with Down syndrome from being allowed to live with who she chooses to (yes, this has happened; look up Jenny Hatch).

          I’m not sure what I said that was particularly hateful, either. Where in the world did I say you should not advocate for your daughter? I said that your voice will never be more important than hers in her fight for autonomy, *should* never be more important, *precisely because* her voice needs to be respected on its own. And you think that my views are going to be the ones that get your daughter locked up? You actually think that my wanting your daughter’s voice to be heard over yours is “hateful” and harmful to society? That I should be ashamed of myself for that? Hm.

          Finally, here’s an idea: society just accepts your daughter for who she is, respects her, without needing to be reminded that she’s a person constantly. I don’t need to be reminded that the people I do respite care with are people — of COURSE they are people, of COURSE they have personalities and wants and needs and likes and dislikes just like anyone. If you think PFL is the way to get there, fine; but you’re speaking over people with actual disabilities, and that is not respectful. Would you feel respected if men decided that they were the “voice of women’s issues,” ignored your opinions and implemented their own plans for women’s futures without asking you first? I sure wouldn’t!

          Also, talk about personal attacks — how many times did you call me hateful and tell me to be ashamed of myself? You called me a coward, you accused me of “attacking” you, you called me heinous and cruel, you told me that my views will only hurt the community. Pot, meet kettle.

          • politicaljules

            That was used that way to make a point and you fell for it!! You see you WERE offended by the use of non-PFL language as you should be.

            The author’s entire article says she has no problem using non-PFL language.

            So the Author prefers to be called “A disabled author” Rather than to be identified as “an author that happens to be disabled.”

            That was the whole point of the article… Or maybe you do not understand the premise of the topic?

          • Anonymous

            I know you think you’re being very clever, but let me be clear: the reason I found what you did offensive was NOT because you used IFL. It was because, after telling the author you found her views “harmful to the community” and offensive, you deliberately referred to her in a way that you found harmful and offensive. Do you know what that makes you? Harmful and offensive!

            You were NOT trying to be respectful to the author; you referred to her in a way you found denigrating. I feel sick to my stomach when I think of the way you disrespected this author. The fact that you were doing it to make a “point” about IFL makes me even more disgusted. Don’t you EVER talk to me about who should be ashamed of themselves.

            Oh, and one last thing: I don’t exclusively use PFL or IFL. I try to use IFL as a default, at least where autism (my area of interest) is concerned, because the self-advocacy community overwhelmingly prefers it; but otherwise, where a disabled person is concerned, I use the type of language THEY prefer. That’s the difference between you and me: when someone has a disability, I respect that their life experiences trump mine, and that I should refer to them in the way that they find respectful, not what I THINK SHOULD be respectful. When you do that? You’re not being respectful. You’re just being self-righteous and smug, lording your opinions and “intelligence” over the heads of people who are actually affected by your decisions.

        • Jane Strauss

          Again, in case you missed my first comment, if you have to use PFL to remind yourself that your child is a child, then you really need to examine your assumptions. All children are children. All adults are adults, even if some do not behave that way. All people have the right to define themselves and self identify in the way in which they prefer. I only hope, for your daughter’s sake, that you have the maturity not to impose particular language on her…and, should she end up not speaking, that you have the consideration to provide her with alternative communication so she *can* express her preferences.

  • Luff2sail

    I am more interested in the respect shown (or not) than the language used – so thank you!

  • KateGladstone

    A colleague and I, who are both autistic, have written a PowerPoint presentation on the case against “person-first” requirements. If you would like to see it, and perhaps make arrangements to license/use it, contact me at and/or James Williams at

  • Coral Getino

    What is the appropriate way to find out what a person’s preference might be? And a second question, is it more offensive when you hear or when you read the “nonpreferred” form? Where is the middle point? Using Deaf/hearing impaired, blind/vission impair, autistic/person with autism, in the same fashion as Latino/Hispanic was coined?

    • Rosella Altman

      My suggestion would be unless your relationship with the person is specifically one of paid support personal, you avoid combining their identity with their disability until you know them well enough to have an idea how they feel. As for referring to a population in general, keep your audience in mind.

  • Tobi Walker

    I am a woman who has aged or I am an old woman. I am a woman with a vertical challenge or I am short. I tend to go with the fewest syllables in a phrase if I want to facilitate good communication. I am also a woman who has disabling PTSD. But the disability is that other people can’t respect me as a person first on a spectrum of needing WHATEVER to go about my day in a productive fashion. If we address The Disability by Accommodating it, maybe we won’t need to define the person by it? (And a lot of this is just grammar and having appropriate euphemisms in common use — “deafmute” or “deaf and dumb” once carried the same stigma as mentally illness does today, and folks who could not hear had to fight to be considered Real People. Also “a person with mental illness” resonates more gently than “a mentally ill person.” and has only one more syllable, so the former might be a better choice?

  • Rosella Altman

    Thank you for writing what I’ve often wanted to say, but usually avoid out of fear. I am studying special education and have worked in a variety of positions which support people with disabilities. I have attended countless training sessions where able-bodied neurotypical people have told me that that the way I refer to myself is offensive to a community with which I identify. When, after years of signing the “pledge” in silence, I spoke up, I was told poilitley, yet firmly that what you call IFL was disrespectful.

  • Jack Rudd

    I am an autistic person, but I am a person with epilepsy. (Not that I particularly mind whether people use PFL or IFL to describe me.)

  • Lovinglife101

    I use “people first language” because, for me, it reduces the stigma of the disease I am living with. I am much more than my disease. I am a person first and want to be recognized as such. After 30 years of being called the HIV positive girl/woman/person. I want others to refer to me as “a woman living with HIV”. I internalized the stigma that society has and I am breaking free by empowering myself and others.

    • Jane Strauss

      ANd that is great, it is your choice. The problem comes when people try to force that choice on those who do not prefer it. The bigger problem is that society imposes derogatory attitudes which make PFL seem to some like the only option

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  • KateGladstone

    > it is never okay to say something such as “Down syndrome person” or “cerebral palsy person.”

    … And, of course, we don’t say “autism person” either, for the same reason.
    But “autistic person” is okay. So, I need a similar “okay way” to replace the unacceptable “cerebral palsy person” and “Down syndrome person” and so on.

    BAD: “autism person” —> GOOD: “autistic person”
    BAD: “Down syndrome person” —> GOOD: ” __?__ person”
    BAD: “cerebral palsy person” —> GOOD: ” __?__ person”

    What goes in the blanks?

    • Jane Strauss

      Great question, as always, Kate.

      • KateGladstone

        And the same people who forbid “autism person” are quite happy to call THEMSELVES “autism parents” …

    • Eventide Parfait

      Trisomic person? *shrugs.*

  • valueall

    Great aritcle. Think it should be “Disabled person” same as “European person” “Deaf person” etc. I have a son with Down syndrome……what is the difference between his having Down syndrome and an Autistic person? I get so confused. I’m happy to be called a “Downs mum” (often have been called this) as I see Down syndrome as a positive thing…… If they do find a genetic cause (e.g. identify a responsible chromosome) for Autism will we then need to say “person with Autism”?

  • Mary Swifka

    A great article and great insight in the comments section. The debate reminds me of a cartoon where a man, standing, is talking to a man in a wheelchair. He asks: “Do you prefer being called a wheelchair-user or a person who uses a wheelchair?” The man replies: “Um, ‘Joe’ would be fine.”

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  • Hannah

    It’s always important to respect how the person wishes to identify, even if you don’t agree with it or find their terminology outdated. If someone refers to themselves as autistic, you must refer to them as autistic, even if you don’t agree with it, even if you were taught to use people first language at your job, graduate program or have experience of working with children that disability. This applies to any disability/condition. NEVER, and I repeat **NEVER** tell a person “you’re not autistic, disabled, epileptic, etc. you’re a person first”. 99% change the person has heard of people first language before and CHOOSES not to apply it to themselves. You need to respect that. If you don’t know what the person prefers yet, use a neutral term like “has epilepsy” or “on the spectrum” or ask the person how they wish to be referred to. Don’t use terms disabled people generally don’t like, such as differently abled, handi-capable or challenged. These terms are only to be used if the person stated they prefer them.

    And also, if you are a professor or someone who is TEACHING people to use people first language, please point out not every disabled person embraces people first language, some people prefer disability/identity first language or terms like handicapped, crip, etc. and to NEVER correct a person who chooses not to use people first language.

  • Dyslexia Today

    Thanks for this conversation…What is the most important is in what context the disability is used…What is being discussed is more important than how a disability is termed…I love “Let’s get that dyslexic boy onto our debate team, he’s awesome!” Than how he is termed “dyslexic boy or boy with dyslexia”. The last thing you want is people so afraid to offend that they shy away from people with differences I do love this discussion though!!

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