Sunday, 12 June 2011

Why I'm Going Off The Term Spoonie

For the past several weeks, in fact probably the last two months or so, I've been really going off the term Spoonie. I mentioned something about that on twitter earlier this week and it didn't go down well. I sort of had the impression that, perhaps, people were reacting to what I'd said without looking at all of what I'd said.  This is my attempt at explaining myself properly.  Please don't take offense, these are my views and only that.  I in no way mean to imply that I think the term shouldn't be used.  It just doesn't work for me.

The Spoon Theory is a way of describe what it's like to live with a long term condition and to need to break activities down into chunks and weigh up options to get through them. It's more about the energy side of things than anything else and is a bit more suited to people with variable conditions. I occasionally find it a useful starting point at times to make people understand but it's never been a good fit for my own disabilities. People who use The Spoon Theory or who live their lives in a similar way due to a disability or health condition are called Spoonies. There is quite a big group on twitter who use the term to identify themselves.

I have CP, which is a lifelong disability and on the whole is a static condition (basically CP IS static but the affects of aging are felt sooner).  I also have depression.  I think The Spoon Theory (TST) is a great idea, that's a point I need to get out of the way first.  However the day to day difficulties I face are more to do access, attitudes, equipment and facility availability.  Energy is a concern of mine but secondary.  Partially this is because I haven't ever known any different so it's normal to me and I almost do these things without thinking.

Where TST does work well for me is in explaining the concerns I have to take into consideration - is the venue accessible to me, which wheelchair to take, how can I get there, will assisted travel work out or if someone gives me a lift, is there disabled parking nearby?  What distances are involved, do I need to take someone with me, is their a disabled loo, lifts, tables in venues that I can sit at? (a venue with fixed chairs at tables is no good for me).  And the big one, have the people I've checked access info with got it correct.  (See Hannah's latest blog entry for an example)

I try to show a balanced view of disability in my blogging and in my life.  I don't want to be all Pollyanna and annoying and look how perfect and wonderful my life is but I want to show that being disabled doesn't have to be a bad thing and that disability does have it's positives (I wrote more about this is my Disability: It's Not All Negative post on Scope's website).  However the term Spoonie seems to me to be used mostly in more negative situations.  Which is fine but goes against what I want to do in my life and how I want to be perceived.

The other side of that same point is that I've seen both as a CAB adviser and in other aspects of my life how things can lose their power if they only focus on one aspect all the time.  When I first heard about the term spoonie I thought it had the potential to be a very powerful term in many different ways but sadly now I fear it's losing it (and possibly even becoming disempowering) which is part of my beginning to feel uncomfortable with the term when applied to me personally.  I'd really love to see a new hashtag started spoonie positives.

Something I can be guilty of doing at times is the "everything is because of my disability" assumption.  I don't do it as much as I used to but it can be a trap I still fall into at times, particularly when I'm having problems with my depression as I have done recently.  A friend and I were discussing just that lately - she also finds it hard.  But she also said that in her opinion (she's a tweeter and disabled but as I haven't asked her permission I won't share who) she see's a lot of "this is happening just because I'm a spoonie" going on which in some cases is overuse (she thinks and I can see what she means although it didn't occur to me).  Obviously it IS hard to know what is and isn't because of disability and I get really annoyed when people say "would you... if you weren't disabled" because how should I know?!

I think probably the biggest part of my issues with the term Spoonie as they develop and I come to understand them more is that I'm not the "right" sort of person for it.  I don't know about living with an acquired disability or health condition.  I don't know what it's like to have your life change drastically.  And I don't know what it's like to wonder what you'll be able to do tomorrow - and what you won't.  It appears to me that most people using the hashtag have conditions like that.  So when I see comments like "all Spoonies dream of a cure" (I would turn a cure down) "we all wish we could go back to how things used to be #spoonie" (I have no before and chose acceptance rather than dreaming of what might have been had I not been deprived of oxygen at birth) "Spoonies are always in pain and tired" (I'm not) etc etc it makes me uncomfortable.  Because those aren't my experiences.  But, that said,  I've always had a problem with labels being applied to me and being shoehorned into groups.

Oh and I haven't seen this myself but some friends tell me the term spoonie has been mistaken for a sexual thing a few times.  That makes me especially concerned particularly as you have some potentially vulnerable people using it and people can and do share very personal details about themselves with it.  I don't know what a good alternative would be however.

I wouldn't be fair in this entry if I didn't mention the fact that there seems to be a community growing amongst those of use the spoonie hashtag on twitter where people can find friendship and support.  That's great.  It really is.  I'm glad for all those people and I hope spoonie continues to be used - if only for that reason.  Twitter has also been great for me for the same reasons.

The other positive thing about the term spoonie is that it's given people who may not be comfortable identifying as disabled or as sick a term they can use collectively for identity purposes as a group.  It's not one I would use to identify myself - I'm disabled and proud of that fact - but it's still a valid term and has helped a lot of people.

On the whole as I write this entry I think it's fair to say I have concerns about the use of the term spoonie and it's beginning to make me uncomfortable in many ways but that's just my opinion.  What it basically comes down to is - it's not for me.

I'm really curious to know what other people think about this please do comment below or send me a tweet I'm @FunkyFairy22

Emma

16 comments:

funkyflower said...

I think you're right that the spoon theory doesn't really encompass your "issues" (it's early!)

I think the spoon theory describes wonderfully for me what living with a chronically energy limiting condition is like and how the risk of getting iller due to said activities is constant.

However I'm not aware nor really wish to be of the type of generalisation and pity seeking communities you describe.

For me the spoon theory removes having to explain what can be quite an emotive subject and in fact makes it less negative to say "run out of spoons" than "shit i'm feeling rough" but it ends there and am happy for it to.

The Goldfish said...

I totally agree with you, Emma. Spoon Theory *does* fit my impairments, but it strikes me as a way of discussing personal limitations - as funkyflower describes, not disability - the barriers that *all* disabled people share. And of course, people with chronic physical illness have many different attitudes towards both their impairments and what disability is - my illness is a bad thing, but these days I don't waste much time lamenting the situation.

For this reason, I am sometimes very uncomfortable with the way that people's personal frustrations, their "spoonie" status becomes muddled in with political matters. Like with benefits - I want to defend my right to state benefits, but I don't want to have to do that by talking publicly about how much sleep I need or how much pain I am in, and generally how miserable my life is. The whole point of disability equality is that that stuff is personal - it's our enemies who are preoccupied with our health.

However, as I say, we're all in slightly different places, and I suppose the thing is to find ways in which we might best represent ourselves and our view points, whilst accepting that we're all basically on the same side.

Funky Mango said...

*expanding on something I squeezed into 140 characters on Twitter*

I became disabled as an adult. I have a variable, progressive condition, which features pain and fatigue as fairly major factors. I also use a wheelchair, so I experience all the access problems etc that are described in the post.

I use the spoon theory as a tool - either to help outsiders understand that my fatigue really isn't like their "a bit tired", or as a shorthand with those in the know ("shit, I'm supposed to be going out but I'm out of spoons").

Because I'm using it to describe the negative aspects of my disability - the pain and fatigue - it's inevitable that it's associated with negativity. That doesn't mean that I, or other people who use the term necessarily have negative outlooks.

It's also impossible to generalise over all "spoonies". Yes, I've heard people talking about wanting a cure, and tagging it #spooonie. That's fine. Personally, I'm not desperate for a cure. One will come along eventually, and that'll be great. Until then, I'm living my life.

Hannah Ensor said...

A good post.
I am opposite to you - I became disabled a few years ago and my condition fluctuates a lot and fatigue is an everyday issue.
I use the spoon theory to explain energy lacks e.g. "used all my spoons yesterday" but I don't normally consider myself a spoonie. My method of using it means it has negative connotations for me. And I don't like labels.
Unless it is directly relevant - When trying to park I am disabled (I want that parking spot), If I want a Dr to take me seriously "I have EDS" but when watching a film or being independent...I'm just me. wheels and all.

Kimberley said...

When I first discovered "spoonie" it did ring true for me. Though I've had EDS all my life, going from being partially disabled to *bang* in a power wheelchair all the time, I found it useful as a tool for explaining to others that my energy levels just aren't as high as they used to be. I rarely identify as a spoonie in my mind though because I do find I use it as an excuse to moan which just isn't me! I'm a naturally happy, positive person. My life is great, I adore my wheels and who I am and I wouldn't change my "bendy power wheelie" self in any way. I've been severely hard of hearing all my life but I refuse to use my hearing aids as I don't see that there's anything wrong with me experiencing the world in my own way. It's different, but it's *me* and I don't use spoonie because if I do, I don't feel like I'm being true to me. Yes I have limited energy and the spoon theory is a brilliant tool for explaining, I just don't always think it fits me very well as an individual because although I have limits, I live a full life within them and I'm happy with that.

Heather said...

I can only reiterate everything the others have said.
'Out of spoons' is a way of describing my energy levels that makes it easier for others to understand, less negative than 'completely exhausted' or 'totally washed out'and those in the know understand straight away without a convoluted conversation when you least need it.It in no way describes me as a person any more than any other single label would.
To be fair I didn't even know a group existed that used the term in such a way. How sad to be so one dimensional.

Tiger said...

Hey there. I've been really bummed out by language policing lately, so I wanted to comment and let you know that I find your balancing reporting, if you will, very refreshing.

I've been disabled my whole life. I was born with a variety of visual conditions and I remember having signs of mental illness as far back as six years old. My feelings on this are of course complicated and complex. I enjoy the spoons metaphor, and I've used it more than once to get across to people why it seems as though I should be able to do things and can't. I cried my eyes out when I read the original post/story that gave life to the term.

But I have seen "spoonie" used in a harmful way, most often as an excuse for poor behavior. I think in some ways that comes with the territory, though. It's the "all spoonies do X" that is particularly bothersome, I think. It's important for us to remember, as disabled folk, that we're not a hive mind. That's what bothers me about language policing and absolute statements; it seems like erasure is inherent to them.

Undercover Nun said...

As I've experienced them, the Spoon Theory and being a spoonie have to do with having an invisible condition, like lupus or fibro or EDS. It's a particular approach for handling -- as the website is named -- the "but you don't LOOK sick" phenomenon.

It isn't that having an invisible disability is any better or worse than having a visible one. It's just that, as you so rightly say, Emma, our experiences are so different from each other.

Personally, I prefer other metaphors than spoons, but if I send someone to bydls then the explanation is already there.

I'd say that the commonality we all share as people with disabilities is that we must make our decisions carefully and put more planning into our choices than a fully-abled person would. And honestly, I'd rather hang out in our common ground, where we can have something to share and celebrate the little things that make us unique.

Spaz Girl said...

Personally as a CPer I feel the Spoon Theory DOES apply to me and my experiences, but I've always had issues with fatigue and more recently, pain. As a "mild" CPer, I am *capable* of doing certain things like walking on my own, standing, etc. but I choose to use mobility aids to do them or limit how much I do them to conserve spoons. It's a way of explaining to people that I get tired easily and that when I say I can't do something, it doesn't mean that I can't do it at all, but that I just do not have the energy for it at the moment. One day I may be able to do something, the next I won't. It all depends. And I do identify myself as a spoonie, because I know that the spoonie community is a community that understands what it is like to have pain/fatigue issues. Does that mean I agree with every single thing that's tagged #spoonie, ever? Not at all. Like you, I am perfectly happy in my own skin and would not want a cure. But the Spoon Theory is really about privilege, to an extent - the privilege that "normies", so to speak, have of not having to count spoons, or at least not count them as much. It doesn't explain all aspects of disability and certainly not access issues, etc, but it's really a great analogy for fatigue/pain.

samedifference1.com said...

Hi Emma

What you've said makes a lot of sense to me as I also have CP. Life with CP is, as you say, norrmal. I don't know any different.

I do get 'low on spoons' but more for the 'normal' reasons- flu etc- than disability-related energy loss.

So I use the phrase 'low on spoons' as a bit of fun on Twitter when I have the flu!

OneOffDave said...

I've found TST very useful for explaining why I can do something some days and not others and, as others have said, 'being out of spoons' is useful short hand.

I don't like the term spoonie as it's quite a limiting label that reduces the 'experience' of disability to something related to the capacity of the individual rather than the lack of accessibility of society. I know not everyone likes 'models' of disability but using spoonie as a label does feel very medical model to me.

Latentexistence said...

Spoon theory fits perfectly where fatigue and pain are the main cause of disability. Like the website says, these are mainly the invisible "but you don't look sick" conditions. Spoon theory is ideal for me, with ME/Fibro but less so for other people where fatigue and pain are a result of other health problems and not the main issue. I think the term "ran out of spoons" is still useful for those that don't directly identify as spoonies though.

incurable hippie said...

I have found the spoon theory useful in the past to try and explain issues of energy and pain to people, but I am going off it a bit.

I started feeling a bit uncomfortable with it around the time that se smith wrote this, which sums up part of my concern about the word. Also, ze provides an alternative - capacity - which I have mainly been using since, because it expresses the same thing, but without the childish-like sounding aspect of spoonie.

I still occasionally use it, and I do feel it was genuinely useful to me at one time, but we all have the right to choose our own language, and to change our minds too. If you prefer not to use that word, or to be described in that way, it's absolutely your right. I've also mainly phased it out, and feel better about that. Others continue to use it, and that's great. We'll all find the right language and terminology for us, and these things are never static, they can change frequently.

Rosemary said...

Hi Emma,

Hope this comes across okay but after reading your blog I wanted to add a comment and give a different perspective.

Until I met yourself, and others from Twitter, I had never heard of the Spoon Theory, and knowing what I do now, I can see it is an expression you either like/dislike depending on an individuals circumstances, but as always, its a personal choice. Its similar (but different) to the expression used for carers, that of 'unsung heroes' Some like it, some dont. Personally I dont.

Anyways, back to your blog piece and TST. For me it has opened my eyes to so much. When friends I have made among you all explain how their day is going - plenty or no spoons - I learn.

I learn about why a certain disability/illness may affect someone.
I learn how much support is needed but not available, for whatever reason etc.

More importantly I learn about you as individuals, about your days when strong and also the days when not so good. These lessons I learn whether TST is used or not, but it was the expression itself that started me asking questions.

I am not sure if I have made sense, and truly hope no offense has been caused. I am just trying to say that no matter whether words are used or not to describe our/your circumstances, the fact is just now, that we are all travelling the same path.

BenefitScroungingScum said...

I like TSP for some issues, and not for others. I use it with my RL friends alot as shorthand for if I'm up to going out/doing something but apart from that it's not an identity I'd take on.
I think the most important point here is that the disabled and/or sick community are managing to have these internal discussions without falling out. The most important thing atm is to stay external united and agree we all disagree on subjects like this. BG Xx

Emma said...

Thanks all for so many comments and such interesting ones too. Nice to meet some new people too :o) I've written more based on the comments which you can see in this entry

http://writerinawheelchair.blogspot.com/2011/06/spoonie-comments-disability-language.html

It's been thought provoking and I plan to write more on similar subjects soon as my brain is now buzzing with such things.

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