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Access: Words and Disability - The Delicate Balance

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  • Russell Brown,

    So how do I reconcile my contempt for “person-first” language with my disdain for terms like “the blind leading the blind”. I think it comes down to this. “person-first” language trips people up, and is unlikely to change attitudes.

    Few things are more likely to make me angry than such concepts being used to deliberately trip people up – that is, to score points or to assert power in discussions, typically by people who have no actual stake in disability.

    I’m very glad you followed up with this one, because I noticed that in the discussion for your first post, there was a good deal of language based in the idea of vision. It’s actually wrapped so tightly into the language that it’s difficult and probably counterproductive to avoid (do you see my point?). I was interested in what you thought about that.

    Phrases that depict disabled people as incompetent, no matter how common their usage, can actually make a significant, albeit subconscious, difference to the way we’re perceived. Those perceptions translate into job opportunities and inclusion. That’s why words sometimes do matter, very much

    Good rule.

    One thing I do – and it’s just for me, I don’t try and make everyone else do it – is avoid saying that some “has” Aspergers or “has” autism. It’s not a a disease, it’s who my sons are and and how they experience the world and I always say someone “is Asperger” or “is on the autism spectrum”. On occasion, I’ve had people remonstrate with me about it on a “person first” level. I try and be polite about it, but I do feel those people really miss the point.

    Auckland • Since Nov 2006 • 18969 posts Report Reply

  • Jonathan Mosen, in reply to Russell Brown,

    Thanks Russell, the whole issue of people being nervous to use visual language among blind people is a common source of social awkwardness.
    It usually goes something like, "Did you see the documentary on TV last night?...Oh...I'm so sorry...I mean I know you couldn't *see the documentary, but...um...did you hear it on TV?"
    I don't know a blind person who doesn't talk about "watching TV", and who doesn't use phrases like "I see what you mean".
    It's complex though, because "see" and "understand" are often used interchangeably in the English language, so people often assume that if you can't physically see something, you can't understand it.

    Wellington • Since Apr 2014 • 10 posts Report Reply

  • Sacha,

    Damn you for posting about one of my favourite topics on a school day, sir. :)

    My understanding is that ’people-first’ language came to NZ via the US which has a more medicalised understanding of disability. Parents there reacted against medical professionals describing their disabled children solely by what they saw as dehumanising impairment labels like blind or spastic or handicapped. They wanted to remind everyone that their child was a person first.

    However, they only went halfway and the labels they kept resulted in some of the clumsy wording, and an ongoing focus on impairment as the only important identifier.

    A couple of influential parent advocates visited NZ in the early 90s I think it was, and the notion took root here. Failure of thought leadership after our 2001 NZ Disability Strategy has seen us veer back towards it in the wake of the US-influenced wording in the UN Convention. We’ve even had people unthinkingly echoing the legalistic “persons” rather than “people”.

    I quite liked ‘people experiencing disability’ because if you see disability as a social process then that’s exactly what’s happening.

    However the main thing is reaching people where their understanding is at now. That’s why I go for the simplest option and use ‘disabled people’. If impairment is actually relevant (because sometimes it isn’t) then I prefer constructions like ‘people with impaired <function>’. Keeps policy folk focused, and the people-firsters* happy. :)

    * not to be confused with members of the People First disabled people’s organisation.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Sacha, in reply to Russell Brown,

    It’s not a a disease, it’s who my sons are and and how they experience the world and I always say someone “is Asperger” or “is on the autism spectrum”.

    I quite like "is an aspie" - just to prove I can be inconsistent with the best of em.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Hilary Stace,

    My aspie friend used to say he didn't live with autism, ie autism was not his flatmate.

    Just having this 'people with autism', or 'children with autism' discussion in another context. A good rule is to ask those with lived experience what they prefer - after all it is their life and identity being described. 'Autistic person' seems pretty universally accepted. David Cohen uses 'autist' - another interesting use.

    NZ social modellers like 'disabled person', ie person disabled by society. Not 'the disabled', which can deny human identity. But I see the use of 'disabled' as a collective noun without 'the' coming into use here in NZ (I think Huhana Hickey uses it) .

    What we can guarantee is that disability language will continue to evolve.

    Wgtn • Since Jun 2008 • 2099 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    live with autism

    urg, I shudder at 'living with disability'

    Ak • Since May 2008 • 16771 posts Report Reply

  • Russell Brown, in reply to Sacha,

    urg, I shudder at ‘living with disability’

    Oh, y'know, so long as disability pays its share of the bills and takes its turn at the dishes :-)

    Auckland • Since Nov 2006 • 18969 posts Report Reply

  • Russell Brown, in reply to Hilary Stace,

    David Cohen uses ‘autist’ – another interesting use.

    David has a contrarian's take on these things. He once told me he was quite happy with "idiot" in its old sense of meaning "profound intellectual disability".

    Auckland • Since Nov 2006 • 18969 posts Report Reply

  • Sacha, in reply to Russell Brown,

    I'd only use it to describe a politician

    Ak • Since May 2008 • 16771 posts Report Reply

  • BDB Inc,

    We already overvalue words, people will always be offended as the associations to words are different person to person. Some people have different meanings for the same word. The "blind leading the blind" means to me a person without vision leading people without vision( vision does not mean sight to me as it does to you -unless vision is used with the word eye).
    I agree the media is guilty of creating many horrible ideas/memes. Todays attack was again on the mentally ill repeating "aggressive " to instal the word in your mind as an association (strangely enough he committed no act of aggression while free and just wanted to escape the institution). Everyday this mind conditioning goes on if you are not aware of it.

    Since Apr 2014 • 61 posts Report Reply

  • BDB Inc,

    There is no delicate balance between words & disability.
    Isn't talking freely about issues more important than people being afraid they will offend ?
    If someone uses a term one doesn't like( is offensive) politely correct them and explain - if they are being rude remove them.

    Since Apr 2014 • 61 posts Report Reply

  • Ross Mason,

    Person in wheelchair with arms and legs tied?

    Bound to a wheelchair seems to always invoke S&M visions……

    I loath that phrase!

    Upper Hutt • Since Jun 2007 • 1497 posts Report Reply

  • Sacha,

    The issue with language is not individual 'offense' but about working together for change. It's hard to persuade a variety of people and organisations to act in unison if we're not even reaching each other on the basics.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Ian Dalziel,

    English can hamper understanding, with too many words that have multiple meanings and associations, often contradictory.
    Context doesn't always instantly clarify the intended message...

    ...is there room for an Access Lexicon?
    (or an FAAQ - frequently arrived at quibbles)

    Christchurch • Since Dec 2006 • 5060 posts Report Reply

  • Sacha, in reply to Ian Dalziel,

    That's some of the leadership which has been missing for so long, yes. But it needs to live somewhere sustainable and well-connected.

    Ak • Since May 2008 • 16771 posts Report Reply

  • oga,

    Having been subject to a similar use of "deaf" by the media to describe a person, group, or organization, I can sympathize, but at the same time, I don't take it personally anymore because I don't really identify with being "Deaf" as a cultural construct, even although I most certainly share characteristics of cultural Deaf, rather, as Sacha has eloquently described it elsewhere (and in the real world), we are not disabled people, rather, it is an uncompromising environment that is disabling. Certainly, language is inextricably tied to identity, perception, and so on. So when someone says "I'll call you later," I don't angst about how it's physically impossible for them to do so. I have more constructive uses for my time, such as focusing on why it is impossible for people to call me. Even with the NZ relay service, I have never once received a phone call in my life.

    Auckland • Since Nov 2006 • 15 posts Report Reply

  • Angela Hart, in reply to Ross Mason,

    Although people can cause offense unintentionally because they use the wrong words or don't know how to behave, the important thing has to be the clear dialogue. We don't want to be talking past each other, whatever the words we're using.
    Deliberate insult or offence is (hopefully) not such a common occurrence.
    When we have the energy/patience/time/will its worth continuing our extra curricular educational role. Most folks mean well.....

    West Auckland • Since Apr 2014 • 211 posts Report Reply

  • Angela Hart, in reply to Ross Mason,

    Bound to a wheelchair seems to always invoke S&M visions……

    It's not as bad as "confined"

    West Auckland • Since Apr 2014 • 211 posts Report Reply

  • Sacha, in reply to oga,

    Even with the NZ relay service, I have never once received a phone call in my life.

    Bit sad. If only I'd known that.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Sacha, in reply to Hilary Stace,

    A good rule is to ask those with lived experience what they prefer – after all it is their life and identity being described.

    That's fine for individuals, but we lack the representational/mandating/governance processes to do it properly at a population group level.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Mireille, in reply to Ross Mason,

    Heh. The German equivalent is "shackled" or "chained" to a wheelchair (an den Rollstuhl gefesselt). More black and white than 50 shades of grey.

    Auckland • Since May 2014 • 3 posts Report Reply

  • Hilary Stace, in reply to Sacha,

    I will be interested to see how the Disability Census - due out in the next few months - deals with it all. They have never been able to capture autism data in any useful way. The other day I found that some agencies categorise autism as a physical impairment (because it is considered a neurological condition and neurological impairments are considered to be physical). So not only is our language contestable, there is little agreement about impairment itself.

    Wgtn • Since Jun 2008 • 2099 posts Report Reply

  • Sacha,

    I did manage to influence the question in the main census to include impaired socialising. However it seems Stats Nz continue their ridiculous practice of suppressing all the answers. I’d like to do something about that.

    Ak • Since May 2008 • 16771 posts Report Reply

  • Jonathan Mosen, in reply to oga,

    Obviously we all think in different ways, so I'm not sure if your post reflects how many in the Deaf community feel or not. But if so, it reflects an interesting difference. Blind people in general are more likely to prefer terms like "watch TV" and "did you see that" to be used because they're commonplace terms. We'd more likely be offended if they were not.

    Wellington • Since Apr 2014 • 10 posts Report Reply

  • Angela Hart, in reply to Mireille,

    Heh. The German equivalent is "shackled" or "chained" to a wheelchair (an den Rollstuhl gefesselt). More black and white than 50 shades of grey.

    Lovely!

    I wonder what the rationale is for Statistics NZ to suppress all the answers, it's not as if the material can be tracked to source.

    West Auckland • Since Apr 2014 • 211 posts Report Reply

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