In which I ramble and am grouchy when it comes to “awareness”

(I was going to title this “why I’m not blogging about CP awareness day” and then I realised that by writing this I pretty much was blogging about CP awareness day just not in the way most people are and that would be a pointless title)

So. Word on the street the internet is that 25th March is CP awareness day. i.e. that tomorrow is CP awareness day.

Except,  to me, it’s not, really.  It’s national CP awareness day in the US.  I’m not in the US and I sometimes feel like the entirety of the fucking internet resolves around people from the US  and that those of us not in it get forgotten about (do you know how many book competitions etc I can’t enter because they’re US only?! Too many).

I just deleted everything I’d written after this point.  I’d somehow managed to hit 443 words without even beginning to cover the point i wanted to make with this entry. Clearly I suck as a concise writer. Particularly when I can actually sum my point up in one TL;DR sentence. Which is:

I don’t really see that there is any need or point in awareness days in general and particularly for CP.

I don’t know what they do.  I find that a lot of people assume I have MS but when I tell them it’s CP pretty much everyone has heard of it. (I did have one rather amusing conversation last year with someone who had CP and CF (cystic fibrosis) confused but…).  I’m not sure why I might need more people to know about CP.

It’s not like there’s some Sheldon style mad scientist in a lab somewhere who has never heard of CP and is sitting there going “hmm I’ve found a cure to some random neurological disorder affecting people from birth and mostly causing mobility difficulties and spasticity but I just don’t know what disorder it is. If only someone could make me aware of it’s existence I could change the world for the 1 in 200 babies born every day with it. What a dilemma.  If only… if only…”

I don’t need a cure.  I’m pretty much perfect just the way I am.  I’m the person I’m meant to be right now.  Plus, given that I’ve spent 31 years using my body in a way it wasn’t designed to be used I’ve got some unusual wear and tear going on (hip issues for one) that curing my CP could halt or possibly improve but wouldn’t get rid of. Also? CP is brain damage. Ain’t no one touching my brain.

And most importantly I can’t help the part of me that reads or hears things about the desperate need for a cure for CP and thinks “there are plenty of other conditions out there that need curing more.  Ones that kill people.” Focus on those.

I class disability awareness and CP awareness as different things.  I believe disability awareness is important.  It’s through the disability rights movement that the community as a whole can improve access and achieve things.  Focusing on little things for one condition or another can’t do as much much as focusing on the majority.  Which is why days like the International Day of Disabled People are much more relevant and important to me (the fact that the entry I wrote for it last year remains one of my most powerful in my opinion is nothing to do with that, honest)

I truly believe that the best way I can help myself and others with disabilities – be it those with CP in specific or disability in general – is just to live my life and get on with things. If people see me doing and being I think I achieve more than if I do some specific stunt to raise awareness of CP.  Because to me CP isn’t just one day – it’s everyday.  And I’m much too busy to do anything more than live my life.

A Dream Is A Wish Your Heart Makes…

I’ve been doing a fair amount of writing (fiction) and the character I was writing about was thinking about the disney version of Cinderella. Specifically the song lyric “A dream is a wish your heart makes when you’re fast asleep.” And then I started thinking about it.

I frequently remember my dreams. They are very detailed and often borderline surreal. I can remember dreams I had months or years ago although not usually when I had them. I also have a recurring dream. I’ve not had it for absolutely ages but it was the one that came to mind. I think taking baclofen might have something to do with the way my dreams are – although even as a young child in my medicationless days I still remembered some of my dreams. But I think I read somewhere that baclofen can cause nightmares in young children? So it wouldn’t be too much of a stretch to think it’s got something to do with the way my dreams are. (Side note I wrote half of this entry then came back to finish it a week later. During that time another CPer brought up the baclofen weird dreams thing so it seems I’m not the only one)

Anyway my recurring dream is that I’m out somewhere, it could be anywhere and usually is a different setting each time I dream it. And I’m not in my wheelchair. I’m walking around. Whatever’s going on in the dream is happening and all is good. But then in the dream I suddenly remember that I can’t walk. The dream is derailed (I think last time I was in a shopping centre and trying to find somewhere to buy a sandwich) and I spend the rest of it hunting around, crawling or more likely shuffling on my tummy (as thats what I actually have to do if I don’t have a mobility aid) in a bit of a panic looking for my wheelchair. This is always a dream and as yet has never taken the form of a nightmare but every few months I’ll have a variant of it.

So when a dream is a wish your heart makes when you’re fast asleep came to mind I started wondering what wish that dream could represent.

My first thought (and it was one I didn’t like) was whether it could be construed as a secret wish to be able to walk. I imagine that’s what a lot of people reading this would take it to be. Especially those who knew me back in the days when I was a long distance manual wheeler and short distance walker but who don’t see me often now.

I can stand. I can take a few steps when I transfer and very very very rarely if the stars align meaning I both need to and I’m having an amazing day at the same time I can walk a few metres with a walker (specifically, for the curious, I have a rollator). Yesterday and today were the first days that happened since the first week in January.

I’m really glad I have the level of mobility I do. I work hard with the help of my family to maintain that. But walking is exhausting, it’s painful and the risk of a fall and injury is always lurking unseen. Plus, I have no balance so I can’t do or carry anything when I’m on my feet. If I’m in my chair I have less pain, it takes less energy, my seating support means my balance is much less of an issue. I can do things and be independent in a way that I never could without my wheelchair.

In the past almost 13 years since I went to uni I’ve gone from using a walker inside and a manual outside through using a manual all the time to my current set up where I use my manual in the house and a couple of other places and use my powerchair if I’m out. There are small changes I’d like to make – I at times miss my mad wheeling skillz I had with my manual in my uni days – but walking isn’t one of them. For someone like me walking really is overrated.

No what I think the dream represents is a feeling of safety and independence. Because as well as giving me independence my chair makes me feel safe. I can move much quicker, safer and easier. I can react if I need too. When there was an argument outside my flat right a few days ago I delayed going to bed until it stopped. I felt I needed my mobility just in case.

And most of all it represents being whole. Because my wheelchairs are a part of my body. And a huge part of me. So maybe dreaming that I’ve lost it and panicking until I find it is about being accepted. By others and by myself.

>Spoonie comments

>My previous post got what I think is the biggest response I’ve had to my blog ever.  Or at least in a long time.  15 comments here on the blog and at least as many others commenting on twitter.  I knew posting something titled “Why I’m Going Off The Term Spoonie” would stir people up but I didn’t expect that.

I’ve been really loving reading the responses and seeing all the different points of view.  Especially the ones that made me think.  I think I probably need to write something else now I’ve had the chance to talk to so many others and also to discover that my views on the use of the term aren’t as unusual as I thought.  In a bunch of my friends I’m known as the one who says what everyone else was thinking but wouldn’t dare say.  It appears by posting this I may have done something very similar – almost exposed the “dirty little secret” of my little corner of the internet.  All in all I’ve seen one person say the post made them very sad and only one person had a particularly negative reaction to it.  Ironically said person admitted they hadn’t read the post on this blog and were just going by the discussion on twitter.  Unfortunately that got a little heated, but you know what? It’s no big deal, it’s only the internet.
I think the key points that have come up for me in this discussion (or at least until I get the time to write and think more) are:
The Spoon Theory is a useful tool for a lot of people but fewer people in my circle see it as part of thier identity or culture than it would at first appear.  Equally the majority of people do recognise that it doesn’t work for all conditions.
It’s medical model based if you go by such things as models of disability.  When I read the comment in which One Off Dave said that it was a bit of a facepalm moment for me.  If you haven’t read my original entry and don’t want to read any more of this, basically that one thing can be used to sum up everything I said. 
 I personally am much more social model orientated when it comes to my CP (I’ve not considered models of disability and my depression but my initial feeling is that may be more medical model) – the social model states that it’s not our medical conditions which cause our disabilities but the barriers put in place by society.  For example, if an event is upstairs and there’s a lift then there’s no barrier to me getting to it and taking part and my disabilities aren’t a huge consideration.  If there isn’t a lift or it’s broken then it’s a barrier in my way and my disabilities stop me taking part.
I also wonder if the medical model aspects are inherent because it was written by a woman with an acquired illness rather than a disability lifelong or otherwise.  Perhaps the medical model aspects are why it works so well for so many people.  Because they view themselves as ill rather than disabled.  That’s not necessarily a bad thing even if it’s what puts me off.  I am now wondering if a social model based analogy could be written but I really don’t think I could do it and I’m not sure it would be a good idea even if I could!
Going back to the “making me think” category, Incurable Hippie posted a link to Cutefying Disability by S.E. Smith.  Well worth a read and some brilliant points relevant to this debate and covering other terms used to identify us as disabled people which are becoming part of our culture and the culture of society as a whole.

Finally, Kali made the very much needed point that it’s good that we have these debates but it’s even better that we have them and for the most part can do so calmly and agree to disagree where needed.  We are much stronger united than we are apart.

>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