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

 

I’ve been wondering…

A Thursday Thirteen list of things I’ve been pondering lately:

…who invented chips?
…does anyone ever use just one piece of loo roll?
…why does one of my powerchair tires have zero tread left but the one on the other side still has a little?
…why are knickers called knickers?
…when will John Green bring another book out?
…how long is too long to wear a bra before washing?
…will I ever get sent another appointment to see my neurologist if I don’t chase him?
…what shall I read next?
…what does mono printing involve exactly?
…do I need my antidepressant dose increasing?
…how long my soon to start second course of iron supplements will be?
…why does it always rain on me?
…should I do NaNoWriMo again this year?

Answers on a postcard please!

>Ask Me Anything

>Haven’t done one of these in a while so I figured it might be fun to do one now. Plus I just thought of a question I’d love to ask another blogger but for the fact it’s off topic to their blog and irrelevant.  That got me thinking that maybe people had things they wanted to ask me but never had…

Ask me whatever you want and I’ll answer in an upcoming blog entry (so long as I’m comfortable doing so, although I don’t expect that to be a problem).

And seeing as one of my last entries was about going to see the neuro physio I’ll save myself from those questions and tell you now.  It went well and the physio seems great.  No real answers but lots to think about and I’m still processing, researching etc.  Hospital transport was, as always, a really great thing but a very long job!

>Books with disabled characters?

>One of my friends sent me a tweet today asking if I knew of any fantasy books with either a disabled main character or a disabled character who plays a decent role and isn’t a token crip sort of thing.  I was very pleased because she’s able-bodied.  That normally wouldn’t be a “yes, pleased” thing but I’ve been reading a few articles writen on news sites about disability today (by disabled people) which are absolutely full of missed the point comments about disability by able-bodied people. Some of which were downright insulting and some were just stupid but most were frustrating.  So being asked for book recs is, in a roundabout way, a good thing

And I can’t really think of any.  I did receive a book to review today which is fantasy and which has a main character with CP.  But obviously, I’m not going to rec a book I haven read yet!

The interesting thing is when I e-mailed the author of that book to see about getting a review copy (in other words to crawl and beg, but hey it worked!) one of the things I said to him was that not enough books feature disabled characters.

So then after I got that tweet I started wondering about books in general with disabled characters.

The first one that came to mind was Handle With Care by Jodi Picoult.  That’s a really good book (I did hate the ending but that had nothing to do with the disabled character, it just sucked as an ending IMHO) and it really handles having a character with OI (I have no idea how to spell the full version of that) well I think.  I don’t know much about OI but I do know about being a wheelchair user, and she got really close to the experience.  In fact there was one moment when Willow, the crip in the book, mentions this one thing about being in a chair and I was blown away because it’s in no way obvious about being a wheelchair user and I wouldn’t expect it to be there.  I’m not even sure it’s something I would mention if asked.

For the crips out there, I am talking of the problem of having long hair and having casters (front wheels) on a wheelchair.  We all shed hair, it happens.  If you’ve long hair and are in a chair, it will end up wrapped around them and caught.  And it builds up.  It’s a pain in the arse and needs clearing out periodically.  And it’s pretty disgusting.

Anyway, back to books.  It took me literally 20 minutes to think of any other book with a disabled MC.  Lottery by Patricia Wood was the only one that comes to mind.  That’s a good book but I preferred Handle With Care I think.  Click on the link to see what I thought of it.

I can think of other books which handle disability issues well such as A Thread of Grace by Mary Doria Russell (I absolutely LOVE that book, must find the time to read it again).  But books with disabled characters or disabled characters who aren’t token characters? I can’t think of any.

Obviously, that doesn’t mean they aren’t out there and knowing myself like I do I wouldn’t be surprised if one came to me in the middle of the night or in the shower or something.  But it is a bit disappointing that it’s so hard for me to think of any.

So if you know of any, rec them to me.  And in the meantime I’ll be in the corner getting over my cold.  And plotting my own book with a disabled main character and all that.  Because if I can’t read about them, I’ll clearly have to write about them.

>And now for something completely different…

>…only I’m not really sure what that might be.

Up two this week.  I’m definitely plateauing and need to do something different to shake things up.  I’ve got one or two small ideas but really I’m stuck on which is the best one.  Probably all of them in moderation but I’m also struggling a bit with my depression over the last few days and that really doesn’t help.

Suggestions, anyone?

>Is there anything you wish everyone knew about disability or something you’d like to see in the school curriculum?

>

Is there anything you wish everyone knew about disability or something you’d like to see in the school curriculum?  [This probably sounds like a stupid question, but I think a lot of people are just ignorant, rather than disablist]
That’s a pretty tough one to answer. It’s pretty much impossible to come up with stuff that everyone should know about disability because there’s such a wide range of disabilities. And also such a variation with the same type of disability between person to person. Even us crips don’t know everything about disability as a whole – we know about our condition and how it affects us personally. And we know bits about others. For example I have a friend who also has CP. Before she’s said things to me like “we can’t do this. we’ve both got CP.” and I’ve had to turn round and go “well, actually…”

I suppose probably the main thing would be that disabled people are just people who want to be treated with respect like everyone else. We’re not special or brave or inspiring, just people. And no, we aren’t “normal” but there isn’t such thing.

Changing the subject slightly, I disagree with your comment that people are just ignorant rather than disabiilst. That might be the case however in this day and age there is absolutely no excuse for it. After all, if someone said something racist or homophobic they would be expected to know what they said was wrong – ignorance wouldn’t be an acceptable excuse. Why should it be so for disabilism?

>Burning Question

>Because I am ever so slight obsessed with all thing Superman at the moment (and also somewhat shallow) I thought I’d take a poll.

Who is the best looking Superman?

Christopher Reeve? (Superman Films)

Dean Cain? (The New Adventures of Superman)
Brandon Routh? (Superman Returns)

>Questions Welcome

>If you could ask me one question about anything at all, what would you ask?

I’ve been thinking lately that I’d like to share more of my experiences so that all of my hard won knowledge of life, the universe and everything (or at least the stuff I know about) can be put to some use. It’s all been worth it but this might just make it more worth it.

And also it might give me more constructive things to do.

So… ask away

>Opinions Wanted

>I got an e-mail about NaNoWriMo today!

I knew it was coming up but I hadn’t really realised that the festivities kick off so soon – sign ups start 1st Oct!

I have half of a badly thought out fiction idea that I could do. Or I could write my life story. Both are projects I’ve written a few words of and abandoned time and again for more years than I can count.

So… which do YOU think I should write?

>How would you define

>Cross-posted pretty much everywhere on the Internet

OK because I was wondering…

How would you define

  • Healthy?
  • Disabled?
  • Ill?
  • Disadvantaged?
  • Suffer/Suffering?

And other like terms.
What do you think when people ask what your illness is or if you are bothered by being around “healthy” people? Do people ask you those sort of questions or am I the only person blessed in that way?