On being a cripple in public

I haven’t talked about having a disability before on this blog. I occasionally rant about it on Twitter, and I write wonky-type articles about disability funding policy. I’ve done a bit of telly talking about it, and, as my disability is public, I encounter people’s reactions to how I look every time I go out into the world.

This space has been a welcome refuge for the last year, where I can just be words on a screen, wondering about politics and where progressive policies will come from. So I have deliberately not talked about having a disability, and what that means. Here, I’ve been free of the side-swipe of progressive folks seriously not getting issues about disability – but only because I’ve not talked about having a disability, not because the issue has disappeared.

Part of my blogging drought has been about not talking about it here. Having a disability informs my life, and my policy interests in fairness and equality. It’s the reason I got involved in politics, and the reason I left. My dear friend challenged me to write more openly online before he died. And perhaps I shouldn’t. But I’m angry, and I’m sick of being nice about being a cripple in public.

My silence here is no longer a refuge. It is silencing my urgent need to tell the world to fuck off.

Today I lost my temper, after being given yet another piece of unsolicited advice. It’s far from the first time, and I’m rarely polite about it anymore. Strangers on the train tell me to rub myself with my own urine, or to use the cream that their grandmother uses on her dog.

Fuck off.

Workmates have had to be repeatedly reminded that I can’t take the stairs, or that the cafe is too far. And no, a fucking shoulder rub is not going to help. Random relatives send clippings about obscure treatments for utterly unrelated illnesses. Far too many people say that I’m too young to have arthritis.

Fuck off.

After the telly stuff, and the repeats, I got letters. Lots and lots of letters. All I needed to do was get my tonsils out, or go to Turkey and let little fish nibble on me. I needed to meditate; move somewhere warmer/cooler; eat magic food x, y or z; shove some vitamin up my arse. I had random people on the train burst into tears when they saw me – “But you were all better on the telly? What happened?”

Fuck off.

I was trained to be polite. To not upset people. To make things nice, calm. I’ve since trained myself to tell all these people to fuck off. To not make them comfortable. To be angry.

I get that people who give this unwanted, and unlooked for, advice think they are being kind. Think they are helping. You are not. And you are person #234509285726 who has thought they were helping.

Fuck off.

The torrents of so-called advice are really about you being afraid. Afraid of how I look. Afraid of being powerless. Afraid of someone who looks different. Afraid of pain. Afraid of being sick. That advice is just you wanting to be reassured that there is always something that can be done. Always some magic pill or potion that can fix it. That if you got sick, you would get better.

Things don’t always work out that way. People get sick. Sometimes they don’t get better. Sometimes there is no treatment.

And that fear is yours – not mine. That well-meaning advice invalidates two decades of treatment. Two decades of hopes raised and dashed. Two decades of frightened folks foisting their fear on me. I have plenty of my own fear, thanks. I don’t need yours.

So fuck off.

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About bluntshovels

Freelance writer, with an unhealthy interest in Senate committees.
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8 Responses to On being a cripple in public

  1. Amanda Mack says:

    Great blog with an important message. Better to be angry than despairing. xxx

  2. Well said. I have a (currently) incurable, disabling disease. I know some of the suggestions are well-meant, but do you REALLY think that on five minutes’ acquaintance you can come up with something I haven’t tried in twenty years?

    Juvenile arthritis, huh? Extremely painful. I hope you have some “better days” soon. πŸ™‚

    • bluntshovels says:

      I know! No, not juvenile arthritis – I was 19 when I first got sick, so an adult disease (just old now!) And so agree, that folks seem to be experts, while presuming I am not!

  3. Tara Nipe says:

    My god son’s autistic – the number of people who think his parents might be interested in their pet theory/some coverage they saw on ACA/behavioural therapy/some supplement their neighbour’s daughter’s boss read about…
    I’m with Clytie Siddall – pretty sure you’ve got a better handle on it than me (and I’m a Clinical Nurse Specialist in Rheumatology and Endocrinology), because it’s your condition, you’re intelligent and invested in it, and only you know how your disease works with (and against) you.
    People are idiots.

  4. lastingquiet says:

    I have had MS since age 22 – 43 years now. At times I’ve been quite ill but usually recovered (prednisolone or luck?) My disabilities if you call them that are still mainly invisible but significant. I still work full time in fairly demanding job around various social policy issues. The worst long term issue for me is now an illness ancillary to MS which affects me significantly but is invisible.

    I started my MS journey long before people had much awareness of disability issues, and that and my own aspirations as a young person, kept me silent about the illness. My one attempt at discussing MS publicly led to a man coming up to me afterwards and saying he was curious about S&M but had never talked to anyone about it. My reaction was one of bemused silence , and a quick departure. He perhaps was deaf, not concentrating or had some intellectual impairment but I didn’t try public discussion again for 20 years. My sense of humour has improved since then.

    I’ve since learned that we have to keep on working with a bit of anger and huge amounts of patience. People generally don’t know unless they have or someone dear to them has experienced illness or disability. The climate is so much better because of all the legislation and the vastly increased capacity for change which the law now allows.

    We have to work together though but it is good to be able to speak, commiserate and plan in our own private spaces as well. I am fortunate in that I work in a team of people who understand illness and disability. Full circle for me πŸ™‚ But I am still surprised at the extent of community ignorance and intolerance. I can laugh at it more easily now.

    Who would have thought we would see an NDIS? I remember this being discussed in the 1980’s. All of us have worked towards this with patience and with anger :). Both are necessary.

  5. Speds says:

    You hit the nail on the head when you say it is other people’s fear. I remember listening to a radio doco about cancer and whether having a positive attitude increases survival rates. It doesn’t (statistically). Which isn’t to say it isn’t good to be positive but when you live with constant uncertainty, pain and fear then you don’t need anyone telling you to cheer up, be positive or rub shit on yourself. Fuck off indeed.

  6. Mezza says:

    Oh yes, big agreement here, and hugs to everyone who can relate. Sick for over half my life, with a lifelong thing that is largely invisible (although the arthritis associated with it isn’t), and have had the same sorta experiences as you; from the crap advice, to people believing it doesn’t exist (!), to people telling me who/what could “fix” me (almost always dubious at best, dangerous at worst, examples), to being told a “good attitude/mindset” will fix my physical illness (I have a good attitude. It helps me manage my illness, yes. It will not fix it, no matter how good my “attitude” is), etc, etc, etc…. Then there’s the folk who think that you must be a hardcore drug addict because you look tired, thin and sick (instead of thinking “oh gee, they’re tired, thin and sick, that must be no fun”), or because you’re fatigued, or in pain. People who say sceptically “you don’t *look* sick”, who think “she looks ok so she must just be a feckless malingerer”, instead of actually *listening* to a person, or looking at reams of documented scientific proof and explanation as to why a person might be unwell… good friends who still think you’re lazy or blowing them off because you can’t join them for a night out, no matter how much you’d like to, or how much you miss seeing people, because they can’t relate to having a body that just doesn’t work sometimes. Partners who decide to leave you simply because “it’s boring living with a sick person” (yes, it’s funny to me now; wasn’t then… πŸ˜‰ ). Watching young, strong, healthy people with every opportunity in the world squander their incredible good fortune by making themselves incredibly sick with all sorts of crap (I’m not against a good time. But everything in moderation, eh…), then coming to you and complaining because they don’t feel very well from having had too much fun. Which they’re saying to a person who’s been stuck in the house for a solid fortnight trapped in a body that’s kinda just made of ouchy skin, hair, frustration and pain, even more than what you usually have to deal with day to day, year to year. Yeah. We do indeed need a lot of patience. To maintain a rudely healthy sense of humour. And to lose our minds at this foolishness from time to time; I think it’s healthy. πŸ˜‰ πŸ™‚ xo

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