Guest blogger

The other day I was having a rant on social media about the language used within the disability sector and the assumptions made about us. My friend Ainslee was feeling the same way as me and I suggested that she get it out of her system by writing about it. Ainslee took me up on my suggestion and I have the privilege of sharing it with you all here on my blog. Here is her piece!

For a while I’ve been thinking about the terminology used in regard to people with a disability i.e. people like me. When I first started my Anthropology PhD, examining ambiguous identities in online worlds, it was suggested I not only look at my area of interest (Indigenous Australians) but also at other categories, such as race, sexuality, gender and disability. I’ve scaled it back to the first category again, but I did a lot of reading about disability studies, contacted other people with disabilities and had many conversations about terminology etc. It didn’t take long for me to realise how fraught the language is in this area.

Let’s commence with nomenclature. I am the only person I know so far who says ‘person with a disability’ as opposed to ‘disabled person.’ Why? Because the former suggests that the person cannot function (just like a bomb that has been ‘disabled’).

Then there are patronising and/or unconsidered statements. My friend Tully recently posted something about condescending statements such as ‘helping people with a disability to achieve their goals’. This infuriates me, as it did Tully. And what about this? I was once nominated for a ‘Disability Award’. I sat there and thought, “Hold on, so it’s an award for the person who is most disabled?” When I pointed out that the title was offensive and suggested ’Community Involvement Award’, it was the prize givers who were offended! Seriously?

There are so many times in my life when people have stunned me with their thoughtlessness. A significant other being told that he’s a special person for giving “someone like her” (meaning me) a chance! Having this conveyed to me because they didn’t know how to process it, was like a punch to the stomach because the initiator was someone who I thought would have had more sense. These people use language in our conversations as if with having a conversation with a child, when in actuality, there is only a few years difference. It takes every ounce of energy in my body not to scream at people like this, who likely mean no harm, yet cause it by belittling others and perpetuating ignorance. The perpetrator of this offence still is unaware that I know what was said to my significant other and that every time we meet I feel sick. I would love to find the right time to say something about it. Alas I haven’t yet, and am not sure I will. I do not want to cause offence, even though they have offended me, in many ways, and in ways that I did not think I would still occur in this day and age.

Often it’s the people who mean well who are the absolute worst. I’ve dealt with service providers who talk to me like I have the mental capacity of a 3 year old. I respond without a smile and a matter of fact voice and the look on their face is priceless. “No, you are not talking to a moron, you are talking to an adult, just like yourself.” “Who would have thought!” “Surprising isn’t it?” And when you provide constructive feedback about this so these people can learn from their mistakes? Well for some service providers, this is the worst thing in the world. People with a disability shouldn’t complain, we should just feel lucky that we have these services in the first place. In my imagination I slap my forehead “Oh sorry, I forgot.”

From my own observations, if you don’t have a disability, doing a certificate in disability studies does not make you qualified to know how to deal with people with a disability. Learning FROM people with a disability, THAT’S how you do it. Oh, and don’t tell a person who is in a hospital bed that “You don’t look like you could do [whatever] lying there like that”, or who think when a person tells you they work, it means they’re getting paid to sit on their backside. This only makes you look stupid and is offensive to the person who has had to deal with such nonsense all their life.

And then there are the do-gooders who like to complain FOR you, even when you don’t have a complaint yourself. These are probably the most frustrating people to be around. They don’t ask if you have a problem with something. They assume you must have, hence they speak loudly in response and are offended for you. In these situations, the only offence is their behaviour.

Finally we have those who claim the glory for the work done by a person with a disability, because the former worked with them to achieve something. In such cases – so common in bureaucratic situations – you are a statistic. Neither your work nor your worth matter: it’s what those who ‘gave you the chance’ have achieved. They get the pat on the back for their good work, whilst you’re behind the scenes actually doing it.

Ok, enough ranting. Thanks Tully for asking me to write this piece. I just had to share my thoughts on some of the ridiculous things I have noticed over the years. Since I finished high school in 1995, I had not been involved in any disability related matters until recently. It is only in the last decade that I have come in contact once more with the issues of structural and symbolic violence that permeate and blight the lives of people with a disability. It is something that I wish I could just be oblivious to again, but sadly there are just too many reminders out there.

I would love to hear about your experiences as I am sure I am not the only one who has had stories like these over the years. Please contact me at arhoo@deakin.edu.au.

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5 thoughts on “Guest blogger

  1. Thanks for writing, Ainslee.
    I don’t think there’s anything WORSE than being spoken to like a 5 year old. Just because the body ain’t doing what it’s told, doesn’t mean the brain isn’t fully processing.
    And don’t even get me STARTED on the baby-voice!
    Some parents are the worst for it! They tell people “I want the same chances for my child as anyone else does, I want my child to fit in” and then talk to them like they’re a baby. Drives me NUTS!

    • I’m glad you liked it 🙂 It’s something that I’ve kept quiet about for some times, as I’ve always been brought up to just shut up and appreciate what I get out of life. Then things like these incidents happen, and I don’t know if it is right or not for me to have these feelings about it, purely because I keep it inside. Am I over-reacting for example? Those are the thought processes that go through my head. In the end though, if they are impacting on my health, causing me stress, anxiety, making me grind my teeth etc, I think it does need to be said. I am looking forward to hearing more experiences from others.

      I forgot to write about this, but I was somewhere that was for an NDIS related thing, and this woman comes up to me, looks down and says “How are you?” with this dripping of condescending voice. I replied with “good thanks yourself?” in a flat tone. She had such a surprised look on her face, it was kind of funny. I mean, I have Spina Bifida. I’m in a wheelchair. The only thing that my disability affects is my legs. Not my speech or anything, so that really surprised me considering where she was. I remember being told at one of the related events that a person sitting at my table didn’t even realise I had a disability until I said it because she was on the other side of the table and couldn’t see my wheelchair.

      • My bestie has spina bifida – random people in the street (usually older people) will bless her and hand her money. It’s crazy! Yes she has her challenges.. she’s been through umpteen rounds of chemo and survived cancer, she’s on dialysis for the rest of her life, and she gets tired a lot, and has migraines – doesn’t stop her being the most awesome amazing lovely person I’ve ever met.

        There is no worse feeling than being talked down to.

  2. Brilliant.
    Absolutely spot on.
    I’ve seen situations like those referred to most of my life. Especially since my brother acquired a disability when he was run over by a 4WD towing an abalone boat and essentially lost the use of his left arm.
    Over the years we were asked why we let him still ride his bike or join Scouts, play sports (badminton, cricket, AFL) or work in a pizza shop or as a panel beater or landscaper.

    Why? Because he wanted to. His loss of the use of his arm didn’t define him, it didn’t stop him from being expected to do the same chores as the rest of us. Nor has it stopped him from growing up and being a labourer as an adult (he’s been a roofer, welder, tiler and personal carer for other adult disabled men in a group home).

    I’ve observed myself that when someone looks obviously physically disabled they are treated as if they are mentally as well and I just do not understand it.

    I have a deaf mute friend who is also physically disabled. He requires a wheelchair and now, in his mid 40s, he has to live in what amounts to an aged nursing home. His distress over MEDICAL staff treating him like he is less of a person and has no opinions or ability to speak for himself has caused everyone who knows him such anger. His body is failing. Not his mind.

    Then we have the opposite where the mind is less than it should be but the body is an Adonis for example.

    So to get to the heart of both Tully and Ainslee’s frustration – why does someone who has a disability of any type, be treated so utterly different to one who doesn’t? Why do the disabled require awards for achieving the same as anyone else and why do they need to be differentiated SO OFTEN?

  3. Great peace, Ainslee, Tully.

    Re your closing questions: My best guess is that it’s a symptom of the general scarcity of people with disabilities as equals in the everyday lives of able-bodied neuro-typical people, and the even greater scarcity of people with ‘obvious’ disability. In a similar way, I don’t work with or know many 90 year olds, and despite attempts to act normal, stereotypes of 90 year olds probably unconsciously influence my behaviour toward them at least initially.

    In both cases, I wonder how much education or awareness campaigns can actually address stereotypes. I wonder if they just scare people into worrying about how they are coming across. But, if there was proper equal opportunity in education, employment, leisure, and community participation, surely we’d all just learn to understand each other as individuals.

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