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Access: Words and Disability - The Delicate Balance

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  • Sacha, in reply to Angela Hart,

    In the past they’ve claimed that people who weren’t actually disabled were answering that they were. Naturally, that’s grounded in a medical understanding. Failure to challenge them on it has been another crucial gap in govt action and community leadership.

    Ak • Since May 2008 • 19745 posts Report

  • Kay,

    From time to time I still see in the newspapers reference to a convicted criminal (more often than not of a violent crime) being epileptic. So what if he/she is? about 1 in 100 people have epilepsy so statistically that means a few convicted criminal will. But for some reason the media never seem to mention if they they have asthma, diabetes, heart disease, etc. So basically, they're reinforcing the old idea that somehow, "epileptic" is a character trait and a contributing factor for criminal activity. Btw, most of us don't consider ourselves to be "epileptics"- we're people who just happen to have epilepsy.

    Wellington • Since Apr 2014 • 10 posts Report

  • Angela Hart, in reply to Kay,

    Kay, it doesn't really make a lot of sense . I expect you could find some sort of health problem with most of us, but the media tend to focus on one or two that they presumably think the public are interested in with respect to crims.

    Sacha, I can understand that claim, I've often been asked in forms if "I'm living with a disability" the answer is yes, but with this question it doesn't have to be my disability, it could be that of a family member. I'm not at all sure that a parent or family member who can speak for someone non-vocal or intellectually challenged shouldn't be able to do so, otherwise how are these people to be represented in the statistics? Generally they probably are not. We have never been contacted to participate in the survey on disabled people, I wonder how representative the sample can be.
    But none of that provides a valid reason for not releasing the survey responses, as fas as I can see.

    Christchurch • Since Apr 2014 • 614 posts Report

  • Sacha, in reply to Angela Hart,

    I'm talking about the two questions in the main Census, not the separate disability follow-up survey.

    Ak • Since May 2008 • 19745 posts Report

  • Sacha, in reply to Angela Hart,

    I wonder how representative the sample can be.

    It’s statistically valid. But you can only answer the questions posed.

    Ak • Since May 2008 • 19745 posts Report

  • Sacha, in reply to Angela Hart,

    I can understand that claim

    They’re referring to people with asthma, for instance. Living with a disabled person is not the same as being one for any policy purpose, really. And it’s a different yet overlapping experience (having experienced both).

    Ak • Since May 2008 • 19745 posts Report

  • tussock,

    It's pretty strait forward as a language issue.

    You "are" the things which you are; smart, handsome, tall, married, a doctor, white (not going to prison for pretty much anything, eh). They're huge social constructs, routinely affecting your everyday life and how people treat you.

    You "have" the things which are normally invisible to society or transitory in nature. You have a TV, or HIV, or poly-cystic ovary syndrome, or a bloody nose, or a degree in statistics. You can also "get" iterative things, like migraines or colds or ulcers, "catch" the infectious ones if it's commonly thought they are such.

    You "had" the things which affected you in the past (often permanently) but are not recurrent. You had a vasectomy, a year off work, a stroke.

    You had a job. You don't have a job. You are unemployed.
    You had a wedding. You have a spouse. You are married.
    You had an accident. You have epilepsy. You are fine, thanks.

    With autism, there's no had. Nothing happened.
    You can have social difficulties, anxiety, you can get panic attacks and dissociative events. But they're treatable, you learn to deal.
    You are autistic though. It's a defining thing. When people think it's something you "have", that's a problem, that causes difficulties.

    Excuse the definite article, "one" reads rather poorly in repeat.

    Anyway, the language people use has to reflect that. "Experiencing" is just bullshit, you experience the mountains by taking a walk on the Routeburn. It's a holiday, something you willingly partake in and then leave behind.

    Disclaimer: I am an aspie, being totally off-base about how language works in the wild does happen.

    Since Nov 2006 • 611 posts Report

  • Christopher Dempsey,

    This is a great post, thank you Jonathan.

    FWIW my take on the issue of language and 'disability' is as follows; I am deaf and have been since birth. So how I am described by the word 'disability' is of not inconsiderable importance to me.

    I'm fortunate that my deafness, which is 'moderate to severe' on some scale (as in, one ear is mildly affected, the other badly affected) has enabled me to function reasonably well in society with the assistance of hearing aids (HA’s). In reality I hear some sounds without HA’s, and depending on context and situation can function, but not well, without HA’s. It’s amazing what smiling and nodding can cover though I’m never sure what I’ve agreed to. Even then, hearing, with or without HA’s, is a wearisome daily struggle; listening requires great concentration and I'm usually knackered at the end of the day.

    Because of my ability to function reasonably well in society, I've always resisted, logically, the term disabled; there lies a diminished status in our society - the special services/rooms/buildings, the poor pay and job prospects, 'being petted on the head', being marginalised and patronised, etc. If pushed I say I'm deaf, which is a recent change for me - I used to say I was hard of hearing. Hard of hearing is well, like your grandfather, or uncle/aunt who's just gone a little bit hard of hearing - the normal hearing people can cope with that, and it's just granddad, or aunt who's still the same person - only a little hard of hearing. No big deal.

    But deaf, that’s another whole ball game. Deaf means you cannot hear, that you have less than hearing. But that’s not me. It’s just an aspect of me, complex and multifaceted, as is everyone else. Every time I say that I’m deaf I take a risk; will I be treated differently? Mostly, no, thankfully. But why change from hard of hearing to deaf? Because hard of hearing didn’t quite cover my situation, and deaf, while awkward and limiting to me, seems to be more accurate, but not quite.

    A while ago I became interested in discourse, more specifically, Foucauldian theories of discourse. Michael Foucault was a gay French philosopher who argued for a discursive construction of the world. I realised that our world, the material world that surrounds us, the institutions that we participate in, and how we 'are' (gay/straight, woman/man, deaf/hearing) are discursive products. Someone at some point in time had to talk about the idea of the computer / laptop / tablet / smartphone you are reading this on. That 'talk' lead to the artefact, and if that 'talk' is changed in some way, then the artefact is affected.

    This lead to consideration of the term disabled, and it's use by non-disabled people as a general catch-all, a handy shortcut to cover all the little and big ways in which people are 'different' from the normal in some way. I'm acutely aware, being gay, of how changes in labels affect you; one day in 1986 I was a potential criminal, the next, not. That is to say, the discourse, the words used to describe me, constructed me as a criminal one day, the next, a legal person with rights. There’s a similar power in the term disabled. You are what that term encapsulates.

    I analysed the term, disabled, and did some (light) etymological research. Dis means something that is negative from a 'normal' situation, a state that is something below 100% (disease, disregard, dispute). Able refers to ability to do something. To be disabled is to be negatively different from a situation of 100% 'normal'.

    Clearly I’m not negatively different from normal. To my way of seeing the world, and I suspect, everyone else shares the same viewpoint, I'm actually very normal, and everyone else is abnormal. I am most definitely not disabled. I realised that if I needed to change this particular discursive construction, I needed to come up with an alternative. I choose differently abled, which more accurately describes what I am. I just have different abilities that makes up my 100% normalcy.
    Differently abled describes a person who is normal but with a range of differing abilities, which essentially, is everyone. We all have differing abilities. Yes I’m deaf, but I have different abilities that aren’t immediately obvious to others, arising as a result of being deaf; I’m keenly observant to changes (I have to be) and I compensate for missing out on hearing things by reading lots.

    Words do matter – they construct our world in all sorts of ways, and often in unseen ways. I’m choosing to reject a word that places me in an inferior position, and choosing instead a term that more accurately describes me.

    Parnell / Tamaki-Auckland… • Since Sep 2008 • 659 posts Report

  • Margaret Moana McGregor, in reply to Christopher Dempsey,

    Differently abled describes a person who is normal but with a range of differing abilities, which essentially, is everyone.

    I'm looking for words to describe a forum I intend to set up for people with disabilities, their families and friends. It's actually extremely difficult to find words which are fully inclusive, not laboured and not offensive. I understand your argument for differently abled, but there are so many differing viewpoints on this topic.

    Auckland • Since May 2014 • 4 posts Report

  • Sacha, in reply to Christopher Dempsey,

    I’m choosing to reject a word that places me in an inferior position

    and I'm choosing to reject the inferior positioning. :)

    Thank you for contributing that. There's no answer that will make us all happy, but it's great to have a broad discussion of them.

    Ak • Since May 2008 • 19745 posts Report

  • BDB Inc,

    We are different -my concept of the word disabled does not mean" I am inferior" when someone uses the word disabled .
    I maintain that we will not get traction if everyone is afraid of using words .

    What I understand is there is a lost of negative reactions to words and fear of offense.

    Words are only pointers, it is in the nature of words, as tools of the mind, to separate. Ideas of inferiority are in the mind not in the word disability.

    If a giraffe kept being told by other giraffes he was a fish but could see who he was would he take offense that the other giraffes called him a fish? Clearly the other giraffes misunderstand his identity.He would only be offended if he though he was a fish.
    You are not MR/MRS DISABLED, that is not your "I" . Disability is a word/label used to describe it is not who you are.
    The problem is many people have identified themselves (after a long period of social conditioning ) with these word labels and cannot untangle. They resent them( unconscious thoughts of and fears of inferiority are attached to the word "disabled" )
    The solution (instead of stopping communication for fear of misunderstandings and offense) is to stop thinking of yourself reduced to your own ideas/concepts of the word label "disabled" .

    Understandably oversensitivity from social conditioning, these negative ideas concepts of who you are have found a nest in your mind,. Maybe you believe them and have not yet questioned who you are.
    Words that reinforce your fears are reacted to strongly.

    I can say I had a fit ( but only because I did?)
    It is OK for me to say it, then why then can't others who don't have fits use the word fit around me?
    For I am not a seizure. I am not confused about who I am.

    I don't want people to tip toe around me in fear of offending me, words are only pointers the negative concepts associated in your minds must not reinforce a false identity.
    Who the heck thinks they are disability!!!
    When someone asks "Who are you"? .... do you say " disabled" ?

    Since Apr 2014 • 61 posts Report

  • Sacha, in reply to BDB Inc,

    Words are only pointers

    See how Foucault speaks to you on that. Signifiers are only the beginning. Power matters.

    if everyone is afraid of using words ... fear of offense.

    I'd say that assigming a narrow range of motivations like that is unlikely to help us forge alliances. What can we agree on?

    Ak • Since May 2008 • 19745 posts Report

  • Sacha, in reply to Christopher Dempsey,

    Even then, hearing, with or without HA’s, is a wearisome daily struggle; listening requires great concentration and I'm usually knackered at the end of the day.

    Yes. This is the everyday experience I've found other disabled people understand best (along with parents of young children). It's simply tiring to adjust to the world. Better-designed settings can reduce that. Starting our workday later, having some help with stuff, being in places that don't demand struggle..

    Ak • Since May 2008 • 19745 posts Report

  • Sacha, in reply to Margaret Moana McGregor,

    It's actually extremely difficult to find words which are fully inclusive, not laboured and not offensive.

    Impossible I'd say. We need to get on with it. But maybe I'm just impatient?

    Ak • Since May 2008 • 19745 posts Report

  • BDB Inc, in reply to Sacha,

    Foucalt did not address any solution to misunderstandings which are inseparable with words (as it is their nature to separate). To separate is the nature of the carnal mind.
    Different word associations are as common as undividual minds. If we do not accept any other peoples concepts for words that are different to our own associations communication breaks down and we separate ourselves .
    I can accept that people do not know what association words have for me they may say a word that may have associations to things I fear/dislike.
    "I must say a word of warning against the too-frequent tendency to assume that the minds of every other sane and healthy person must be like one's own. "
    (Sir Francis Galton, 1881)

    I cannot understand what you saying are the second part of your post .What is this word overinflation about if its not that people are offended by their word associations in their own minds.

    We do not have to all agree on words or philosophies.
    If we can firstly assume no one intended to offend here then we don't have to trip up on words.

    What we agree on is the need for change in the system?
    We agree we want good( experienced in the field) people to head the NZ disability sector ?
    We want receptive support agencies- performing their duties?
    We want family carers to not be publicly slandered and to be paid for the same work other non -family carers get funding for?

    I agree. Lets see if people can try to accept other peoples different minds( word associations with fears, dislikes, likes) without being offended thats not impossible.

    Since Apr 2014 • 61 posts Report

  • Angela Hart,

    Well said BDB Inc.

    Christchurch • Since Apr 2014 • 614 posts Report

  • Sacha,

    I've posted on my blog about problematic words when wrting about disability. Welcome your feedback.

    Ak • Since May 2008 • 19745 posts Report

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