Uninspiring

Although my upcoming talk this week is on photography I’m using the platform to make some subtle points about disability.   My neighbour used to be a keen mountaineer, only he got stuck up a mountain in a blizzard for 24 hours and lost all his fingers, both thumbs and part of his nose to frostbite and had to have his leg amputated as it was badly crushed.  He is the poster child of someone who is disabled.  I, OTOH, will look totally fit and well as I stand before my audience yet the ‘disabled’ guy runs 3 miles a night on his artificial leg and still goes mountaineering while I struggle some days to get dressed and only manage a shower once a week.

I asked if I could take a photo of my neighbour for my talk and he agreed.  The resulting image was put on facebook and immediately I received comments on how brave and inspiring he is because of all he achieves despite the challenges his disability poses.  I don’t disagree.  Despite having no fingers and only one leg he runs a thriving upholstery business, has 4 children and has so far been on three holidays this year………while I lie in my bed skint and alone having not had a holiday since 1996 because I’m way too sick to travel.

I’ll never be called inspiring or brave.  Not that I would want to be called brave simply for enduring the shitty hand I’ve been dealt and I know it also gets on disabled people’s nerves – it’s not like we’ve deliberately chosen our lives like someone chooses to run into a burning building – but the point remains that there is acknowledgement of overcoming adversity with disabilities which is absent when one is chronically, and more importantly untreatably, ill. It is, of course, a different kettle of fish when it comes to The Big C because cancer patients are routinely thought of as ‘brave’ and ‘inspiring’ and when they’re cured by modern medicine they are deemed to have ‘won the battle’, words which are all too often missing when describing the chronically ill.

If healthy people acknowledge me at all it’s as lazy, weird, anti-social, weak or a scrounger and the words “you poor thing” have actually been said to my face.  The strength it takes to live a life of chronic illness is never acknowledged let alone applauded.

I may not have four children (who, btw, live full time with their mother) but I do have a dog and two elderly, sick parents to look after.  I may not climb mountains but I create with my photography.  I blog (nearly 1 million visitors!), I volunteer, I teach…………yet he is ‘brave’ and ‘inspiring’ while I am ‘weird’, ‘lazy’ and ‘a poor thing’.   Why is that I wonder?

 

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8 thoughts on “Uninspiring

  1. Jan Groh

    Sigh, yes, life with invisible illness and disability. “But you don’t look sick!” And why most inspiration porn is so derided by (many) people in wheelchairs: they’re not doing anything truly heroic, they’re just living their lives vs succumbing to depression and wallowing in self-pity.

    Heroic to me is appearing “well” like we do (usually – I’ve had a few very visible moments!), while hiding thousands of sensations, reactions, brain fog and a crap load of pain in our bodies no one can see or feel. But getting on with things anyway. FWIW, I think you’re heroic. I only have the Trifecta (of hEDS/MCAS/dysautonomia), not CFS/ME on top. I can’t even imagine. Keep truckin’ on!

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    1. Jak Post author

      You’ve hit the nail on the head there Jan. I’ll be standing there tomorrow night looking totally normal and actually feeling like death warmed up, worried my brain won’t function, or I’ll faint, or I won’t be able to stand long enough because my hips and back are awful atm all the while trying not to let any of that register on my face. We shall all get Oscars for the performances we put on every day!

      Appreciate the kind comment 🙂

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  2. melody

    Jak, I do want to say you are one of the most inspiring and brave people I’ve encountered, even if I only know you online. I hope that isn’t irritating. Through some of my own experiences, I can grasp somewhat what it takes to keep on going without much support or acknowledgement and cope with the kind of misunderstanding and invalidation that you encounter every day. From you I’ve learned that’s it’s possible to keep going, even if at times it seems my body and heart and spirit break, and I think that’s true of many of us reading your blog. Not to mention all the practical knowledge you’ve shared!
    And I like how your photograph seems to be asking me to consider the paradox of the relationship between the heroic and the ordinary.

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  3. Helen

    Yes! I feel like I spend my life apologising for my limitations, which irritate and disappoint other people regularly, instead of being acknowledged for what I DO achieve.

    I remember distinctly catching a segment on tv about a riding for the disabled scheme, and being quite jealous of disabled people who get opportunities due to their disability that I don’t, and practically wishing I could swap ‘disabilities’ with them…..

    It wasn’t a proud moment really 😏

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  4. That Other Jean

    It’s all about visibility, isn’t it? It’s as though you can’t be inspired by what you don’t see. People with chronic diseases, trying to get on with their lives, look like everybody else, unless you happen to catch them in bed or in pain (or both). It’s easy to admire someone for overcoming a physical handicap, but a lot harder to applaud someone who looks perfectly fine for getting out of bed in the morning, because no one sees the struggle. Those who share in chronic illness know, though. Thanks for all you do, Jak.

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    1. Jak Post author

      You’re so right Jean – it’s the invisibility of our struggle which is the biggest sumbling block to people’s understanding of our situation. Thanks for the lovely comment x

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