Saturday, 14 January 2012

Spoonie: good or bad?

I have recently come across some people vehemently opposed to the term spoonie. For those unfamiliar with the term it is used by a large number of disabled people, who, for one reason or another have to "manage" their days very carefully. This may be due to a lack of energy, excess pain, having to change position frequently or other reasons I have not thought of.

The term spoonie was coined due to an essay called "The Spoon Theory" found on a website "But you don't look sick".

Essentially a "spoonie" is given a very limited number of spoons each day and every activity (and this includes simple things like washing, getting dressed, eating, or even sitting up for a "prolonged" period) costs a number of spoons. Due to the low number of spoons, unlike other people every single activity has to be very carefully considered and weighed up and prioritising is essential.

So while some define being a spoonie as someone who has low energy, etc, I define a spoonie as someone who continually manages and priorities their tasks and energy due to pain/fatigue etc. So it is a coping method just as much as a "symptom".

I regard being a spoonie as a fact of life, no different to being a wheelchair user. It is a useful term which explains to people why I may have to rest, or leave early or not do lots of things several days in a row.  More than that, I regard it as a technique. If a spoonie does NOT manage their energy correctly they soon become unstuck. In my own case, before I had adapted and accepted that I simply did not have the ability I used to have, I pushed myself to do things I couldn't really do. I would then become extremely ill.

I am now very adept at knowing exactly when to push myself and when not to. I also know that it is possible to push for a special event and to pay for it later. It is ok. Not particularly pleasant, certainly not doable the whole time, but well worth it. I regard all of this as the "spoonie method". It is what it means to BE a spoonie.

So I was rather surprised when I was told that I was "self pitying" and "maudlin" for calling myself a spoonie. Apparently spoonies are concentrating on their problems and feeling sorry for themselves.

Now I must admit that I am not a huge fan of the original spoonie essay. I do find the tone a little too self pitying.
If I had been explaining the idea to my best friend I would have let her use up all her spoons and then laughed in her face and told her she now had to go to bed at 11am. At which point we would have had a giggle and then tried again until she got it right.

If ever someone tries to pity me I explain that it is a coping mechanism, no different to using my wheelchair. Sure, it is clunky, it doesn't go upstairs, and it isn't ideal. But it usually gets me from A to B. I'd be a heck of a lot worse off without it.
Likewise being a "spoonie" ie managing my "spoons" is awkward and it is annoying having to think about it all the time. But it allows me to do the things I need or want to (most of the time) without making myself ill.

I don't expect your pity for being a spoonie any more than I expect your pity for using a wheelchair. If I describe myself as a "spoonie" or a "wheelchair user" I am simply stating a fact.
Me telling you I am a wheelchair user will help explain why we need accessible venues if we go somewhere.
Me telling you I am a spoonie will help explain why we can't do lots of things all at once together, or not one day after another and we may need to adapt to this by various means (eg shorter times out, rest periods, etc).

Now explain to me why the term is offensive and why I am self pitying?


  1. Only quibble I might have as another spoonie is whether the original essay is self-pitying. I'm not sure whether we're seeing impairment or culture being expressed. But even if it is self--pity, surely people can distinguish between the author's self-image and her description of a tool for daily living?

  2. I'm just rereading the original essay. I was a bit harsh in that I think what comes across is actually her friend's shock and yes, pity, rather than her own.

    In any case, even with that niggle, I do think the essay is a great tool and is hugely helpful. I would not be calling myself a spoonie otherwise. ;)

  3. Spoonie is an amazing term for multiple reasons. First of all, it's simply an identifier. I can say "spoonie" in my profile and other spoonies instantly understand. It may be a plus that non-spoonies don't too! The #spoonie hashtag on twitter has been a great help to me in finding friends and learning things about myself. The spoonie essay itself has been useful although I think there are probably some less contrived descriptions that could convey it better.