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