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stella young Stella: dont call me a person with a disability.

Stella Young.

BY STELLA YOUNG

Last week, the Victorian Government released Reporting it Right, a handy little instruction manual to tell us the right words to use when we’re talking about disabled people. Or is it people with disabilities? People with disability? People with a disability?

I’m sure you know what I mean – us freaky looking/sounding/behaving people that make everyone so uncomfortable. It’s a good thing there are rules now. There’s nothing like spelling out the dos and don’ts to make people even more anxious about something they already find confronting.

Of course, some people are a little bit up in arms, dismissing it as political correctness run wild. Melbourne radio presenter Neil Mitchell is particularly incensed, especially about what he’s supposed to call toilets.

Disabled toilets are to be no more…And disabled car parking or disabled entry areas. All banned. All gone. They must now be accessible toilets, accessible parking space and accessible entry.

While I don’t agree that talking about the language we use in relation to disability is about political correctness, I’m actually with Mitchell in my general distaste for these guidelines.

The Victorian Government is not the first to publish such a guide, and they probably won’t be the last. There are already dozens of guidelines and rule-books about this stuff. They’re remarkably inconsistent, which is a problem in itself.

PA22 290x385 Stella: dont call me a person with a disability.

Don’t called this a disabled toilet. Rather, go with ‘accessible toilet’.

This resource from the Queensland Government urges journalists to “specify the disability” of the person they’re reporting on. By that I can only assume they mean “find out the medical name of this person’s impairment and insert some sketchy details you’ve sourced from Wikipedia”.

Journalists already do that at every opportunity. I am repeatedly asked in interviews exactly “what’s wrong” with me and I always give them the same answer; I don’t identify the name of my condition in an interview unless it’s relevant to the context of the story. The fact that I’m a wheelchair user is relevant to a story about access to public transport. The long-winded medical term for my impairment is not.

Reporting it Right tells us that we must use “person first language”. We must say that we are people with disabilities and put the focus on our personhood, lest Joe Public get confused about whether we fit in the animal, vegetable or mineral column.

Let me make this quite clear. I do not identify as a person with a disability. I’m a disabled person. And I’ll be a monkey’s disabled uncle if I’m going to apologise for that.

In her latest column, Lisa Egan sums up why many people identify as disabled people as opposed to people with disabilities.

I just have a real problem with the phrase “person with a disability” and the notion of “having a disability.”

I am disabled. More specifically, I am disabled by a society that places social, attitudinal and architectural barriers in my way. This world we live in disables me by treating me like a second-class citizen because I have a few impairments — most obviously a mobility impairment.

Like Lisa, I subscribe to the social model of disability, which makes a clear distinction between impairment and disability. Impairment describes our physical or neurological state – like paraplegia or blindness – while disability is created by the barriers we encounter in society – like buildings with no lifts or information not being provided in formats we can access. To say that a person “has a disability” is to say that these barriers are our responsibility. My disability exists not because I use a wheelchair, but because the broader environment isn’t accessible.

In my own home, where I’ve been able to create an environment that works for me, I’m hardly disabled at all. I still have an impairment, and there are obviously some very restrictive things about that, but the impact of disability is less. In environments that are less disabling, I’m free to refer to myself in other ways that make me feel proud. In fact, “crip” is my preferred identifying term.

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Stella Young.

I find the term “crip” an empowering way to refer to myself, in much the same way that some  of the gay community, but by no means all, find the term “queer” empowering. Some of my favourite people in the world also identify as proudly crip. Laura Hershey is a fine example.

In the 10 or so years I’ve been identifying as a disabled person, I’ve been told hundreds of times that I must call myself a person first, as though the thought had never occurred to me. In fact, when I first heard about person first language as a teenager, I was fist-pumpingly excited about it. But, like many things in my life, how I feel about myself has changed.

Now, I find the concept of having to clarify my status as a person extraordinarily condescending. No one else is ever asked to qualify their status as a person. Gay men and women are not “people with homosexuality”. Women are not “people who are female”. Footballers are not “people who play football”. I’ve met a lot of disabled people in my time, and not once have I ever met someone whose impairment is so profound, that their status as a person is in doubt.

I understand that some folks prefer the term “person with a disability” and that’s completely fine. Over and above my own language preferences, I think people should be able to describe themselves however they choose. But I do resent being told, particularly by the Government, that there’s a right way and a wrong way to talk about disability.

The “person first” principles in Reporting it Right are just one aspect of a deeply flawed, and no-doubt very expensive, document. It also contains such “rules” as using the term “person with autism” in preference to “autistic person”. A great many autistic people disagree, including Jim Sinclair.

While this guide might be well meaning, and the publication of such things certainly seems to be a growing trend, I think the creation of a set of rules does far more damage in the end. Encouraging people to focus more on what they call us than how they treat us is counterproductive. And the thing is, there can be no set of rules or guidelines for how to describe disability for one very simple reason; we’re all different people, with different politics and identities.

I do agree that language is important, which is why I will always support the eradication of language that vilifies and marginalises disabled people. Campaigns like Spread the Word to End the Word should be applauded.

Putting an end to calling each other “retards” and “spastics”, and generally using disability as a shortcut for something we hate, is one thing. Quibbling over whether we say people with disability or disabled people is quite another.

This piece was originally published on ABC’s The Drum and has been republished with full permission.

Stella Young is a disability activist, comedian, knitter and the Editor of Ramp Up, the ABC’s online space for news, opinion and discussion of disability issues. You can follow her on Twitter here.

This gallery was created from pictures uploaded to a Facebook page called ‘This is what disability looks like.’ The page was started by people living with disability to show the rest of the world what being disabled is really like.

This is what disability looks like.

Do you find the correct language to use about disability confusing? What do you think about ‘Reporting it Right?’

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35 Comments so far

  1. Tyrone Cook

    I am sorry Stella but I do not agree with you, I have a rare syndrome called PHACES and that pretty much means I have multiple disabilities, I am a person with a disability, saying you are a disabled person means you can’t do anything for yourself, it gives me the impression you are broken but you are not, you just have to use a Wheelchair and may need assisstanc with certain things.
    I am a person first, disability second, my name is not PHACES syndrome, my name is Tyrone and I prefer I get introduced as Tyrone and that I have PHACES. You may have your own opinion and views, I have mine. I agree with the guidelines and I will continue to push to be identified as the person first, disability second!

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  2. Respectful Mom

    A person who lives with specific challenges or who is disabled can call themselves whatever they want. They can take the power of words and use them in any way that they feel good.
    HOWEVER- I am a mother of a son who has autism. I work with other families who are living with autism. I am not dealing with the people who have autism, but with their parents- mostly their moms- and mostly with families who are being completely ‘crippled’ by the challenging behaviors that autism brings. Many moms would like to think of their children as people first, so out of respect to the work they do every day week month year and decade, I’ll use person first language with them. Most people with autism do not care how they ate referred to, b/c they do not care what you think- LOL- and if I begin to hear from folks with autism themselves who strongly prefer a particular ‘label’- I will happily respect that with them individually.

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  3. Jo

    I see Stella’s point.

    And last week I was thinking, argh I’ve got it all wrong and my language is all dated and hurting people.

    When all along I just try to be nice, treat people with respect and not make too much of a big deal about such things.

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  4. gee jen

    A really great perspective. I was an advocate of last weeks post and while this has given me food for thought I think ‘person-first’ language will continue to be my first choice. Perhaps it is a bit PC and certainly resources would be better spent on actually helping with real-life disadvantage but i think language is importantt and while every person is different and will have different preferences I think there needs to be a starting point – and in m opinion this is the best one to promote

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  5. LozR

    Stella, your shoes in that pic are awesome! Who cares about anything else?! X

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  6. Tripitaka

    This was a great read. It’s really opened up some new thoughts for me, especially the bit about how the environment influences how disabled or not you are.

    I guess the agonising over what sort of language to use, is really a reflection of our discomfort (as a society) in dealing with people with disabilities. It would probably be good if the government spent less money and energy worrying about it, and more on building ramps, funding support workers, etc.

    Great piece, hope to see loads more from Stella in the future.

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  7. Maree

    It all gets very confusing. It’s no good just using the right words. General society needs to improve on the actions and be more tolerant and inclusive. There’s still a very very long way to go. How many good friends do you have, with a disability? How often are they included in your social life and holiday plans? How often do you take that extra bit of time just to remember their difficulties and put yourself out a bit? How often do you slow to their pace and allow the extra time that they usually need to do things? Disability doesn’t go away.

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  8. Groldis

    I have a 22 year old daughter with several congenital brain malformations which impact on her life every minute of every day but aren’t visible to the rest of the world except when she lands in hospital. Everyone’s an expert but nobody really understands unless they’ve been there. Looking ‘normal’ is good and bad in equal amounts. The thing that annoys us the most is when she tries to explain something that’s impeding her progress or ability to access things and the reply is always “Don’t worry, lots of people blah blah blah..” They’re not hearing! They think it makes her feel better but (I assume) but it’s really insulting and happens way too much. They need to walk a mile in her shoes and also to LISTEN to her.

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  9. stella

    I find this relevant in my area of work with Aboriginal people. it annoys me so much hearing the term “Aboriginie” or even an Aboriginal. I am an Aboriginal Person.
    and the term “Indigenous” (while each state has different preferences) is the Government term for Aboriginal people and Torres Strait Islander people.

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    • Anonymous

      That’s interesting to hear. Genuinely not trying to be ignorant, but what is the difference being Aboriginal and being an Aboriginal Person?

      Isn’t that the same as me saying I don’t want to be called Australian. I want to be called an Australian Person. And my husband wants to be called an English Person?

      I’m really curious to know your thoughts stella. Is it something to do with history and heritage? x

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      • stella

        I can’t speak for everyone, I guess it’s just to do with the history of being considered part of flora and fauna and not a citizen.
        I get what you mean though, I consider my self an Australian too, and wouldn’t bother correcting someone referring to someone as ‘an Aboriginal’ but some people are bothered by it and it is recommended in the government guides for Aboriginal protocols.
        As long as people stop using aboriginie i’ll be happy!
        thanks for your question…

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  10. Anon

    Interesting piece. As a person with a hidden disability ( bipolar) I loathe the idea of being called ‘mentally ill’.

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    • Horizon

      I know what you mean. I suffer anxiety and depression but I don’t accept the idea that I’m “mentally ill”, I refer to it as “mental health issues”.
      I’m sane, I’m logical, I’m capable of critical thinking. There is such a stigma put on your disabilities and if they aren’t apparent to others, people just think you are lazy, dysfunctional, incompetent or making excuses. They don’t accept the notion that you are a person with serious barriers underneath all the labels. The term mental illness sounds like you are incapable of reasoning, are less human and are deceptive.

      I also have a hearing impairment which requires me to wear hearing aids. It’s so hard for people to register that it can affect your life or your job opportunities. Some work environments will discriminate against hearing impaired/deaf persons for practical/safety reasons.
      Having a hearing impairment means a lot of extra effort you put in just to communicate. People don’t see the stress though.

      Also there’s a lot of discrimination towards mothers who have disabilities. They are more likely scrutinised by the public and especially by government services.
      Despite having more barriers, they can’t show it or Government services like child protection are more likely to find fault in their parenting.
      There’s no support for mothers with disabilities, most mothers have to keep their struggle/disadvantage to themselves because they fear their children will be removed.

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  11. Maria

    Stella, you’re one of my favorite contributors, here and on the ABC. I know you must at times resent (perhaps too harsh a term) being a spokesperson for disabled people and certainly you can’t represent all views but the way you write really normalises disability and I think has a tangible positive impact on the way readers of your articles think of and thereby treat others ( I know it has for me).
    You write with the same honesty that I think Bec Sparrrow writes about loss and grief. Which makes it such high impact.
    So thank you!!

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  12. Linda

    The convention in Australia has been to use “person with disability” to emphasis the person because quite frankly too often a person’s disability has overshadowed every aspect of their humanity. From the moment of diagnosis you start going down a separate “special” path to everybody else eg early intervention, special school/class, special swimming lessons etc, sheltered workshop. day programs, special group homes and on and on.
    I totally get the social model approach that people are disabled by society, but to the average punter you a just disabled, they don’t get the distinction.
    For those interested in the social model, there is the best and funniest explanation on you tube http://www.youtube.com/watch?v=9s3NZaLhcc4
    Just to add, while Stella might find the term “crip” empowering for many it is gut wrenchingly offensive.

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    • Able

      “From the moment of diagnosis you start going down a separate “special” path to everybody else eg early intervention, special school/class, special swimming lessons etc, sheltered workshop. day programs, special group homes and on and on.”

      Well, it’s a fine balance. If the above things weren’t provided some people may claim that there’s discrimination against people with a disability and that we as a society aren’t doing enough. Sometimes that separate ‘special’ path is warranted and necessary.

      We are lucky to live in a country where these issues are even discussed, let along acted upon!

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  13. Anon

    I think people often describe others with something that is quite obvious about them, not intending to be offensive, for example, my brother is exceptionally tall and is often referred to as ‘the really tall guy’.
    Although I can see how sometimes it can be offensive, but I disagree it’s only people with a disability, growing up, my male neighbour and I went to high school together, and he was bullied mercilessly for being gay. Even now 10 years later, if I mention him to someone I went to school with, they say ‘oh yeah, the gay guy’.

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  14. Amanda

    I get that learning a person’s name should be enough to identify them, without having to even mention that someone is disabled, or is a footballer, or is gay.

    But there are times when a term is required. So Stella, when talking about you, as a person who is a….”disability activist”…”activist for the disabled”… “advocate for disabled people”… help me out here.

    Because whichever term you decide is appropriate will invariably offend someone else.

    Having a “heart in the right place” is all well and good, but doesn’t prevent offence.

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    • Bradley

      Amanda, I couldn’t agree with you more.

      We should all just shut up ! I mean it. Say nothing to no one, never more. Whatever we say or write, no matter how innocently or well intentioned we are…someone, somewhere will spit the dummy !

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      • Doug

        Agreed. Why are so many people just dying to be offended these days? White liberal guilt?

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        • Anonymous

          Yes!! Oh my. It’s like people are looking for a reason to be offended. No one should talk to anyone ever….JUST IN CASE you offend them.

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        • picardie.girl

          Read this: http://exilelifestyle.com/offenseless/ for an interesting take on this topic.

          It’s very good.

          Choose not to be offended!

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  15. fran

    is the government going to ban all adjectives or are they just stifling our ‘free’ speech and selectively just confusing/crossing human rights areas in singling out disabled people. and wasting time on a problem that didn’t exist!

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  16. Anon

    Well Said!!

    It makes me so angry we people are TOLD (in my opinion, labelling someone) to ‘put the person first’ and be politcally correct…if you treat the person as a person and show everyone the respect and dignity they deserve than you shouldnt need to be told and you wont need labels!!

    People who are confused and worried about ‘getting it right’….stop worrying and overcomplicating it so much. Make the (very small) effort to know the persons name and you wont need to worry about offending anyone or being politically correct.

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  17. Anonymous

    i think Stella makes some great points. the notion of annunciating that somebody who is disabled, is also a person is really demeaning.

    ultimately, for me, all this debate about how to refer to people with disabilities/ conditions makes me really uncomfortable about discussing these people/ issues because you’re always politically incorrect. it means when i do need to talk about a disabled person i’m always fumbling and second guessing myself. surely it should be about the sentiment and not about nit-picking at language.

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  18. Bradley

    When I worked for the Commonwealth Public Service, we were encouraged to use the term “people or person with/a disabilities/disability as it put the people/person first.

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  19. Kate

    As always an interesting and great piece from Stella.

    I much prefer being referred to (if its necessary, and how often is it necessary?) a person with a mental illness rather than ‘mentally ill’ because ‘mentally ill’ is only a small part of what I am and I hate to be defined on that basis. But I totally get your point about ‘person with a disability’ putting the disability back on the impaired person rather than on society. Maybe the difference is I don’t consider mental illness as something created by society (generally – there are some notable exceptions ie when homosexuality was considered an illness), but rather a physiological impairment I have, so it’s quite acceptable to me to say a ‘person with a mental illness’

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    • Bec

      As a community mental health worker, we were also encouraged to always put the person first – as in “a person with schizophrenia” rather than a “schizophrenic”… Thinking about who the person is outside of a diagnosis.
      I was really interested to read Stella’s take on this, and the differences for the field of disability and how this can differ. Thanks again!

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      • H

        To be politically correct, i am a person with epilepsy. But in everyday language, I am epileptic and i refer to myself as an epileptic if it’s necessary. I don’t consider it a personal thing, I have no problem telling people i have it. Cos I was born this way baby! :p

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  20. Bradley

    Several years ago I did some volunteer work at what was then called The Queensland Spastic Welfare League. Now referred to as the Queensland Cerebral Palsy League, it had once been named The Spastic Centre.

    We were advised to call the patients “consumers”. To this day, I can’t for the life of me work out what was being consumed other than care, support, and concern.

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    • Tripitaka

      Pretty sure these days they would be called clients. Have never heard the term ‘consumers’ mentioned in that context before.

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  21. crispy77

    Bravo Stella! Great article!

    I remember as a first year OT student, we were all told to call our patients “clients” and we had to start using “person with a disability” rather than “disabled person”. It’s refreshing to read your viewpoint and I understand completely about what you say about the disability/impairment scale being dependent on situation and environment.

    That said, I do have to admit liking the term of “accessible toilet” rather than disabled toilet – that way I feel less guilty on the odd occasion that I use an accessible toilet as the only way I can use a toilet with a large pram and 10 year old in tow, where there isn’t a convenient parents’ room! :-)

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  22. JB

    Every time I see that Stella has an article on Mamamia, I click straight to it because I know it will be an insightful and fabulous read.

    Stella, thank you for your articles, thank you for your insights, thank you for being f*cking fantastic!

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    • Kate

      JB – I couldn’t agree further! The more I read of Stella’s articles, the more I wish I could hang out with her over a wine or two.

      Another well written and fascinating piece Stella!

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  23. Bradley

    Well now I’m totally confused !

    One week we are admonished to say “this”. The next week we are admonished to say “that”.

    Hell ! I realise that the desire to prevent anyone from ever feeling offended causes the language to change, but I had no idea that the change would be demanded of us in less than a week !

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