Rotation Curation for #Disability #rocur

I’ve been curating the @OxfordIsYours twitter account.  It’s a RoCur (Rotation Curation) account for Oxford and the person who runs it said living in Oxfordshire counts.

Basically RoCur is where there’s an account (often on twitter) where people take a week at a time to run it and share their experiences and tweet on the subject.  Most of these relate to places – like with Oxford Is Yours I’ve been tweeting about where I’ve been and what I’ve done – but some relate to hobbies or jobs or organisations or anything else.

I’ve been enjoying it and have learned about a place in Oxford I’m going to visit soon I didn’t know about. I’ve also met a couple of new tweeters who I’ll follow from my own account when the week is over. And possibly have a couple of other places and events in mind I’d like to go to the logistics of which may prove tricky as they aren’t in places I can get to easy.  That’s basically the point of rocur – to share tips, tricks, and experiences and recommend places and venues.  The person who runs OxfordIsYours said to me last weekend she was looking forward to reading a week in my life and that’s basically what it is.

Admittedly days like today when I’m close to home and not doing very much it feels like a struggle to have anything relevant to the account to tweet. But on the whole it’s been an interesting and fun experience and I’m glad I’ve done it.

I’d really like to have a go at curating People of UK for a week.  But what I’d really really like is for their to be a disability rocur.

And as far as I can tell there isn’t one.

I’m thinking about setting one up.  I know of one other person who is interested in taking part. But I think we need more than that to set it up.

So I need help to do that.  I need to know if people are interested in that.  And if so

I need people to be curators.

I need people to signal boost this message

And I need people to read and comment and tweet and just generally try to use this as a way to make our already pretty awesome disabilty community online better and more of a community.

I was asked on twitter what definiton of disability I would apply and I’m going to go relatively wide and say you simply have to self identify as disabled.  I am however going to specify that this is not at present open to carers because I want it to be a space where disabled people can share and speak for themselves.

Once I know that there’s some life in this idea and people are interested I will write up some more guidelines with specifics but basically it doesn’t just have to be about the disability side of being a disabled person.

Let me know in comments if you are interested or tweet me @FunkyFairy22

 

Self-Care Sunday: Thinking It Over

I’m not sure what to write about today. There have been lots of little things going on like continuing to take my meds everyday (I have approx 8 days left on iron tablets for the anaemia. That will get easier after that because those are my only three times a day med) and taking a break from my wheelchair in the middle of most days. And working on picking my battles and when to let things go and move on. But I don’t have a lot to say on the little things – in part because it feels too soon. The picking my battles thing is something I probably should blog about. Just not today. Mostly because that would defeat the object of letting things go.

I killed my wheelchair batteries off last Monday and ended up walking home incredibly slowly to ensure they didn’t die completely. The good thing about that was it meant I bumped into an acquaintance. I really, really don’t know them well and hadn’t seen them for years. It was nice to chat and they shared a piece of information with me that’s been making me think more on a subject I’d vaguely wondered about then dismissed. That could be good for me. Maybe.

Truly I’ve been thinking about a lot of different things this week. One of which is this occasional address by the awesome Tim Minchin. I should probably act on some of his points. In fact, not probably, definitely. But I must also admit to being a little disappointed it wasn’t a beat poem like Storm or a song. That would have been epic but probably would have diluted its message.

On being a writer

I know you want to sing. See. I love to sing. Nothing makes me happier.I either wanted to be a singer or the head of the Ice Capades. Hey. Do you know who the Ice Capades are? Don’t roll your eyes. They were very cool.

I went to my mother who gave me this book…called Letters To A Young Poet. Rainer Maria Rilke.

He’s a fabulous writer. A fellow used to write to him and say: “I want to be a writer. Please read my stuff.” And Rilke says to this guy: “Don’t ask me about being a writer. lf when you wake up in the morning you can think of nothing but writing…then you’re a writer.”

I’m gonna saythe same thing to you. If you wake up in the mornin’ and you can’t think of anything
but singin’ first…then you’re supposed to be a singer girl.

(from Sister Act 2: Back in the Habit)

Sometimes people ask me about writing. Advice on getting started as a blogger, or can I tell them about opportunities that are out there.

If I’m completely honest I’m probably not the best person to ask.

I love to write. Love love love it. But I don’t do it as often as I’d like to. Or even as often as I should. I’m the Queen of Procrastination.

I’ve been blogging and writing for a long time. Hell, I started doing it before blogging even existed. When I first started sharing my life online it was November 2000, they were called online diaries and everyone looked at you like you were really weird if you told them you wrote a diary and shared it for anyone to read (I’ll admit it: I was an avid DiaryLand girl. And sometimes I still miss that oh so basic but so wonderful site.)

That’s 13 years. The idea of so many years of my life being online blows my mind. If my blog was a person it would be a stroppy girl kicking and screaming and complaining that it’s not fair. And no one understands it. And if only it could be noticed and allowed to do it’s own thing it would be brilliant. A star even.

As much as the teenage metaphor started off as just a bit of fun I do think its also it’s a valid one for writing.

It’s harder then it seems. People who don’t write think it’s an easy thing. People who are just starting out don’t always understand the work involved. And there will always be times when I email a site with an idea and they turn me down, or I read an article and think “I could have done better” if only they’d let me try.

I can give advice on writing and blogging. But I’m not sure I should.

I’d probably just say its hard but it can be really worth it and you can get a lot out of it. Blogging is a great way to start in my opinion.

I could tell you about writing opportunities. If I googled them first. And I’m kinda selfish.

I put the work in. I found what was out there and made it happen. The two main other sites I write for are invitation only. I worked hard to get my slots. It makes me angry when people just expect me to get them slots on invitation only sites or let them guest post on my blog and then get annoyed with me when I say no (note for people thinking about guest blogging: do your research. I do not accept guest posts on my blog and even if I did most of what’s sent to me is a poor match. It seems they’ve just gone “disability blog” and not read any of my content).

I realise my saying no annoys you. I’ll say it again. Writing is hard work. Your expectation makes me feel you’re belittling my achievements. Your expectation pisses me off.

I could recommend articles and writers to other sites. But there’s no point in my doing so if I don’t think it’s right. My reputation is important to me and recommending or sharing the wrong stuff for the wrong site (or on my blog) could put that at risk.

I want to be helpful and support other writers. But I can’t do it for you. And I want to be a writer more than that.

The only way to be a writer is just to write.

Dust If You Must

So as you can probably tell from my last few blog entries I’ve been doing a lot of thinking lately.

My sister commented on one of those entries that it made her think of a poem that’s doing the rounds on Facebook. I’d seen the one she meant bit not paid too much attention to it. Sometimes my newsfeed feels like a never ending stream of photos, poems, quotes and sentiments all designed to inspire or to make you think or feel good and they begin to blend into one. Which probably defeats the object but there you have it.

Anyway after reading that comment I did a little googling and tracked down a copy. I think it’s worth sharing here. It fits well with what I’ve been thinking and writing about and is probably worth remembering which I won’t do if it stays just a thing I saw on Facebook.

Wikipedia tells me it’s called Dust If You Must and is by Rose Milligan. It was originally published in 1998 in The Lady.

Dust if you must.
But wouldn’t it be better,
To paint a picture, or write a letter,
Bake a cake, or plant a seed?
Ponder the difference between want and need.

Dust if you must.
But there is not much time
With rivers to swim and mountains to climb!
Music to hear, and books to read,
Friends to cherish and life to lead.

Dust if you must.
But the world’s out there
With the sun in your eyes,
the wind in your hair,
A flutter of snow, a shower of rain.
This day will not come round again.

Dust if you must.
But bear in mind,
Old age will come and it’s not kind.
And when you go, and go you must,
You, yourself, will make more dust.

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

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.

>Life is short

>

I just found this image on Facebook via Shelley and couldn’t resist sharing. It’s a text based image sharing a manifesto for living based on the idea that life is short and is from Holstee. As a side note I believe the version on that site to be an accessible (described in the html tags) image.


Beautiful isn’t it?

It’s almost a shame that I didn’t find this yesterday when I was pondering why we do things we don’t like and don’t do things we like. But actually I think I like that it’s in a separate entry.

>50 Questions That Will Free Your Mind: Question 3

>I recently came across 50 Questions That Will Free Your Mind. I was very intrigued by the questions and decided to make answering them one of the goals on my current 101 in 1001 list.

I’m going to try to answer one question a week. You can find the other answers I’ve written so far here

3. If life is so short why do we do some many things we don’t like and like so many things we don’t do?


Why indeed? Duty, honour, integrity. Because we feel we must? I think it’s probably all of those things and more.

Lately I’ve been trying to put myself first more and worry less about things I should be doing because either society believes I should or I feel like I need to.  Things like taking on others problems and being a shoulder to cry on.

I did a good job of that today when I met a very newly disabled person who obviously needed some info and support.  I told her one or two very basic bits and gave her the Advice Guide website URL.  With others in similar situations I’ve offered my e-mail or phone number (although those were people I knew a little better and knew I would see again, this lady I may not see again).  Part of this is the CAB adviser in me – I know where to go to claim housing benefit, how to fill out a DLA form that sort of thing so what does it cost me to say “oh contact the council to sort out HB” etc etc? I don’t (and won’t) do proper advice but I do pass on bits that are easily found otherwise or sometimes tell people things from my own experience today – e.g. I told the lady today that DLA forms are depressing because you have to share how bad things are and it helps to get someone else to help you with it – I’d never do a disability related assessment form without help.

I do enjoy my CAB work (most of the time, obviously not always) and I get a lot out of it – it can be very rewarding.  And sometimes helping friends is nice too.  But I am cutting that down a lot (well, as I said I’m trying to) because it gets draining, especially when you have to keep telling people the same thing.  It’s not always easy to say no, especially when people go “hey, Emma knows about that (or might do)” but that’s the society expecting people to do things again.

I suppose the other thing to think about with this question is “Would we be happy if we did what we enjoy and didn’t do what we don’t?”  And I think the answer is yes.  Realistically we couldn’t just do things we like and not do things we hate as much as we’d all like to.

Tim McGraw has a song called Live Like You’re Dying.  I really love that song.  It’s about making the most of what time you do have, enjoy it and truly live.

(lyrics on the you tube page)

The thing is though if we all “lived like we were dying” we would be happier, more fulfilled and perhaps even happier because we wouldn’t be as stressed.  But only in the short term.  Because at some point society would fall apart.  Maybe we wouldn’t have clean clothes.  Or the shops would run out of food.  Or there wouldn’t be public transport because no one wanted to drive the buses.

Sometimes we have to spend time doing things we hate, or aren’t keen on (hate maybe to strong of a word) because it’s what we need to do to survive.  I think however that it can be hard to determine how much is enough and when we really can say no.

There are obviously times when we can’t do what we’d really love for legitimate reasons.  Others when we kid ourselves that it’s legitimate but really it’s not.  No one wants to be thought of as lazy or a scrounger or anything like that.  But everyone wants to be happy.  I think the true answer to this question lies in the fact that we’re all (me especially) fighting to find a way to balance those two things – and finding it hard to do so equally.

This is a tough one to answer but those are some of my thoughts 😉

>50 Questions That Will Free Your Mind – Question 1

>I recently came across 50 Questions That Will Free Your Mind. I was very intrigued by the questions and decided to make answering them one of the goals on my current 101 in 1001 list. I’m going to try to answer one question a week.

How old would you be if you didn’t know how old you are?

This is a tricky question and one of my least favourite on the list but I decided to work through the list in order so I’ll give it a shot.

I’m 29, I’ll be 30 in December.

I think in many ways growing up with a disability meant that I learned certain life lessons earlier than the majority of people do. For the most part I see this as a good thing. On the flip side having CP meant that some childhood and teenage experiences or perhaps rites of passage were out of my reach. Some I have now experienced and others I haven’t. This used to be something that really bothered me but it doesn’t as much now. Partially because I’ve come to realise that they aren’t all they are cracked up to be (in some cases) and that a lot of people are in similar positions to me.

But the question relates to age. I think the experiences I “missed out on” if you will made me younger than my age – or at least they did when I was a teenager. The thing is though, that’s part of being a teenager – firsts, lasts and bluster and bravado about what you have and haven’t done.

Equally learning the life lessons early – about rights, fairness, trust, access etc. Meant I grew up quicker than my peers. Because I knew about relying on people who were meant to help you and being let down and I knew I didn’t have an automatic right to do what everyone else was, that sort of thing.

I think as an adult those two things are less of an issue than they used to be. They’ve played a big role in making me who I am but now they’re in the past and rarely come out. I do think in someways I am very fucked up and this played a part in it. That said I said that to one of my besties last week and she said she didn’t think I’m at all fucked up. So I must be doing better than I realise. Or doing a really good job of hiding it.

I also think actual age becomes little more than a number once you get well into your twenties. I have friends who are younger than me by several years , ones who are older than my parents and everything in between. Obviously we have different life experiences to each other and bring different aspects to our interactions. But even if all of my friends were turning 30 in December like me that would still be true.

So if I didn’t know how old I am, what age would I say? Mid twenties. I like where I am in my life right now and for the most part I like who I am. That’ll do me.

Unless, of course, the question gave you a do over and let you go back to where and what you were at that age. In which case I’d choose 18 and just off to uni. Those years were very important to me – and a hell of a lot of fun!

>Brief check in

>I’ve got lots going on and lots to think about and I’m feeling rather frazzled just thinking about how busy next week looks like it’s going to be.  I’m fine but I don’t want to blog about all the stuff I have to think about at the moment (mostly because of one person who might be reading this).  I’ll be back tomorrow with more of an update but for now a few bits:

I liked the new Torchwood but thought it wasn’t dark or sexy enough.  I think I probably need to rewatch Children of Earth however because I felt a bit like I’d missed something…  It’s certainly a very interesting premise and I just hope spacing it over 10 episodes isn’t going to make it drag at all.

And I absolutely loved Harry Potter and The Deathly Hallows part 2.  There was a second showing about 40 mins after we came out.  I gave serious consideration to go to grab my prescription as planned then getting a sandwich and going back for a second viewing but I didn’t.

I’m on google+ if anyone wants to add me.  Emma Crees.