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

 

The Disability Blog Carnival

Just quickly because there was a question in my comments:

The disability blog carnival is technically still running. However there really haven’t been any submissions (1 since I took over in January) so it didn’t happen in February.

I do have a pile of links I found and plan to post them soon but the past week got away from me and I didn’t have the capacity. I’m keen to keep this going if possible.

Submissions via email to ejcrees@gmail.com or twitter @funkyfairy22

Disability Blog Carnival – January

Welcome to the first edition of the new version of the Disability Blog Carnival.  It’s great to hear from so many people who are glad to see it continuing.  I’ve only had two submissions but I’ve also spotted a few interesting posts so I’m including those too.

First we have this post from The Goldfish – The Sessions: Discussing Disability and Sex Work.  The Sessions is a film based on an essay by a disabled man discussing his use of a sexual surrogate.  I’ve not seen it as it’s not been on locally to me but I’d like too.  The Goldfish manages to discuss the issue from many angles and raises several good points.  As always I come away from her longer posts with plenty to think about and feeling like I need to go back to it when I’ve had my thinking time and reread it.  There are no spoilers for the film in her post but she does link to the original essay which obviously, could be spoilerish.

As I think I wrote when I posted the call for submissions one of the things I like about the carnival is finding new blogs.  Yasmin’s blog is called Damn The Muse and is a new one to me.  She submitted her post Attempting to remain disABLED about her scooter breaking and trying to fix it herself when the system is causing problems and delays in doing so.

Now we come to a few posts that I’ve spotted on my travels around the net:

In Brightest Day: Ableism in Harry Potter contains some of my favourite things.  Harry Potter and a discussion on disability issues, specifically the ableism (referred to by some as disablism) faced by Remus Lupin and Gilderoy Lockhart.  I knew that there were several disabled characters in Harry Potter but Lockhart hadn’t occurred to me.

Awareness can be a bit of a touchy subject.  I have done disability awareness talks in the past.  But what I always try to do with those is show that being disabled doesn’t have to be a bad thing.  It’s got it’s negatives and it’s challenges but that’s just life for everyone be they disabled or not.  Facebook seems to forever be full of posts encouraging me to post this or sign that or share this status to raise awareness of CP or childhood cancer or special education (every week seems to be special education awareness week to judge by facebook).  And a lot of the time I read those things and I scroll past thinking “why do I need people to be aware of my CP? What difference will it make to me.”  I’d much rather be known as Emma and show all the interesting things about me than be known as the girl with CP who only talks about disability stuff.  Besides, what would you rather read on my page, the fact I need you all to be aware of CP and the fact it’s my disability or the fact I had chocolate digestives for breakfast (I didn’t today but that was my status a couple of weeks ago) and finally got to leave the house on Friday after being snowed in for a week?

It can be a little bit controversial to share that I don’t often get the point of awareness raising posts so to be honest I’ve been keeping my mouth shut and my fingers away from the keyboard.  But that’s why this post from Grace Quantock (another new to me blog) Why I don’t support awareness raising had me nodding along and saying “yes” as I read it.

I spent a lot of yesterday giggling at the “normal awareness” posts on facebook which were started by Disability and Representation and seriously cracked me up.  A tongue in cheek look at the inspiration porn disability photos that frequently show up online.  Although I strongly suspect based on comments I saw that a few nondisabled people didn’t get it!  Tonight I discovered their blog and How to talk to normal people: a guide for the rest of us has totally made my day.  I love it.

And something I don’t love so much but which has been entertaining me tonight is the Heard Whilst Disabled hashtag on twitter.

The next carnival will be on 28th February.  Submissions can be left in the comments here, tweeted to me @FunkyFairy22 or emailed to ejcrees@googlemail.com.

 

Disability Blog Carnival – Call for Submissions

One thing I’ve really enjoyed about blogging over the last few years is the Disability Blog Carnival that’s been run by Penny Richards from the Disability Studies, Temple U blog.  It’s been a great way to meet new people and new blogs.  And it’s made me think and learn and write about things I probably wouldn’t have otherwise. I’ve especially enjoyed the many times I hosted the carnival on the various forms this blog has taken over the years.

With the plethora of social media out there now the demand for the carnival has died off and Penny decided that she wouldn’t run the carnival any more.  I’m sad to see it going and offered to make something of a last ditch attempt to keep it running in a slight different form.  Twitter and facebook are brilliant for links but if you miss the post you miss the link and it’s very difficult to scroll back and find them again.  This is a collection that you can return to again if you want.

On the 28th of each month I will post a collection of links to different posts about disability and/or by disabled bloggers.  Things that have caught my eye but also things that people send me.  My plan is that for the first three months I’ll host it here to get it started but then from April I might see about getting different hosts and it moving around again.  There will be no set theme of the month so with the exception of blatent advertising, and hate I’m not going to say “anything goes” but it pretty much does.

The first post will go up on Monday 28th January 2013.  I’ve already got a couple of links in mind to share but suggestions can be left in comments here, tweeted to me @funkyfairy22 or emailed to ejcrees@googlemail.com

Inspire a Generation

I’m going to be hosting the next Disability Blog Carnival.

In honour of the London 2012 Olympic and Paralympic Games the theme will be Inspire a Generation. Which for those not in the know is the sort of catchphrase or tag line for the games. I’ve just come back from a four day trip to the Paralympics and I absolutely loved it. I will blog in more detail about my trip but it was definitely an amazing experience and I found it inspirational for more than just the sport. I really didn’t want to come home.

I thought Inspire a Generation was a good theme to use for the carnival. However the theme is not just about the games so if it makes you think of something different that’s fine. I have a few other ideas related to the theme but I’m interested to see what others come up with.

Here’s how this works:

You can submit older posts or write new ones
They need to be related to disability but don’t need to be written by disabled people
Posts need to fit the theme in someway but it’s not rigid
The deadline for posts is Sept 26th, I hope to post the carnival on 30th Sept.

You can leave your links in the comments here (first time comments are moderated to prevent spam), tweet me them – I’m @FunkyFairy22, or email them to ejcrees@googlemail.com with Carnival or similar in the subject line please.

>Words – The Disability Blog Carnival

>This is the (day late) January Disability Blog Carnival. Our theme today is words and we have several posts to share.

I originally chose the theme because I am focusing on the word courage this year. I’ve been meaning to write a longer post about the reasons behind that decision but most of my blog time lately has been taken up by words of a different sort – my 100 days of writing project.

I’ve also been wondering about the meaning of wheelchair user. I’ve been thinking that maybe there needs to be a different term. But I’ve yet to come up with one!

Ok that’s enough about me. Here’s some other people’s contributions.

First up we have Becky who is someone I think should blog more often. Her post is Words words words – they matter.. She writes:

Words, though, aren’t without their connotations and their price, in terms of my mood, depending on the situation.

The Goldfish is the next participant with mad bad dangerous to say as she wrote in the email she sent me:

It’s about the words we use around mental illness and asks how we can
separate these from the words we use around outlandish behaviour which
may have nothing to do with mental health.

As someone who has some mental health problems and uses the username CrazyWriteNow in some places it really made me think.

Loathing words is by Dave Hingsburger of Rolling Around In My Head. He addresses several common disability words and basically calls bullshit on them.

Shiloh has done something a little bit different in her post about hope. She’s taken a common end of year meme and used it and her word of the year – hope – to look forward to the year ahead. I found it quite an intriguing idea but I think I’ll stick to my end of year tradition.

In what I think is the first vlog I’ve included in my editions of the disability blog carnival we have this very heartfelt video Acceptance by Elaine, who tweets as @raggydoll79. It made me want to gather her up and give her a big hug.

Girl With The Cane sent me a link to an older post of hers. Politically Correct. It’s about the power of words and it’s brilliant.

As she writes:

If you really believe that words are just words, put your money where your mouth is. No agenda of politically correct language…the respect of finding out someone’s personal preference…and going by it.

Gimp Tude is a new blog to me. Having just gone back to read awesome I think it might become a regular read.


This year I’m going to be awesome. Able-bodies hold your pity please. Hold your stories of brave and inspiring. I’m just going to be more awesome than I’ve ever been. So deal with it.

Gimp, by the way, is the one disability positive word that makes me uncomfortable. I think it’s because it’s a very American word so I don’t hear it very often and also because I first heard it about 9 years ago before I began to know about reclaiming words etc.

That’s all folks! Dave Hingsburger is up next.

>It’s Only Words

>I’m going to be hosting the next Disability Blog Carnival. It’s going to be on Tuesday 31st January 2012.

The theme this time round is Words.

I have seen a lot of people on twitter and in blog entries talking about picking a word to focus on this year. I saw it last New Year as well but didn’t act on it . However this year I’ve decided that a focus word might be a good thing to have along with my goals for the year. And the word I’ve chosen is Courage.

For the carnival this time round I thought it would be interesting to know what other people’s words are.

Have you come up with a word of the year?

What words do you really hate?

Or like?

Does disability shape your view of language or even individual words?

Those are a few ideas that I came up with for the carnival but I can wait to see what others think of!

Submissions can be left in comments here, tweeted to me @FunkyFairy22 or emailed to ejcrees@googlemail.com if you email please put carnival or similar in the subject so I know it’s not spam

The carnival will be on Tues 31st Jan and ideally I would like entries by Sun 29th please.

>Milestones – The 75TH Disability Blog Carnival!

>Welcome to the 75th Disability Blog Carnival!  I chose the theme Milestones based solely on the fact that 75 seems to be a huge number! I have to say I didn’t realise when I chose the theme that the day of the carnival would be a bit of a milestone day for me.  And yet the sort of milestone that only another crip can truly understand the meaning of.

My powerchair broke down almost four weeks ago.  It’s been a long and complicated road to getting it working again.  And it’s been really hard.  Today it returned home, cleaned, with new tires and with the fault fixed.  I’ve been treating it to a nice long charge before taking it out but tomorrow is the day!

I’m not the only one who has been sharing their milestones and their thoughts.

Gemma has written about a milestone in her journey with mental distress.  Her bravery and her honesty in Finding Ways To Cope show just how strong she is (contains potentially triggering material)

One of the things I like to do when I host the carnival is to include some new or new to the carnival bloggers.  I love discovering new blogs and I was especially pleased when Hannah started her blog because she’s an old school friend of mine.  In her post for International Wheelchair Day she wrote about getting a wheelchair and the freedom it gave her – a pretty big milestone in life

Andrew is also new to the carnival.  Milestones is his first submission and is about his journey since losing most of his vision

Allison is turning 21 this month which I hear is a big milestone in the US as it’s the legal age to drink (it’s 18 here).  She wrote about how she plans to celebrate and how she and her family have made sure she hasn’t missed out on other milestones even when her blindness made the traditional way impossible.  Celebrating Milestones With My Dad is well worth a read and I’d like to take this opportunity to wish Allison a very Happy Birthday!

As I have CP, I’ve always been disabled and so have no before and after memories or a day when my life changed.  Funky Mango (welcome back to blogging!) was diagnosed with MS on 17th March 2005.  In Happy Birthday to my MS she explains why it’s a day she celebrates every year

For Todd the last Christmas Day represented a difficult personal milestone showing the difficulties disability can bring and how not all milestone moments are good ones and it’s not always possible to be happy on days like Christmas.

Carl has been thinking about various different Milestones in his life – and how some people make more of them than he thinks necessary.  The old “oh look, a CRIPPLE!” type thing.  His post is thought provoking and very interesting (and not just because he described my blog as great).

Sue Marsh is an avid campaigner and blogs at Diary of a Benefit Scrounger.  She recently did a week of posts on ESA (Employment and Support Allowance) which is the newish benefit to replace Incapacity Benefit and is paid to people too sick or disabled to go to work.  I won’t go into details as they are all on Sue’s blog but suffice to say ESA has been badly planned and badly executed and a lot of disabled people are scared. Where’s The Benefit frequently receives comments from people considering suicide if they don’t get ESA and there are many similar stories on The Broken of Britain and One Month Before Heartbreak.  Recently it was announced that a public inquiry is to be held into ESA – a huge milestone considering how many people have been campaigning for change.  In ESA Week Ends in Success! Sue explains the details of how to submit to the inquiry.  She is also offering to help anyone who for whatever reason can’t put their submission in the required format.  I’d like to encourage all UK residents who read this  to strongly consider doing so.

Elizabeth McClung recently read Wish by Joseph Monninger and in made her think.  She reviewed it and shared how it relates to her own experiences.  People don’t always let you do what you want and experience what you want when you have an illness or disability as both the book and Elizabeth’s own experiences showcase.  An example of the milestone twisted by the well meaning but thoughtless person on the sidelines.  It sounds like a great book as well, I really want to read it now!

Milestones: Seeing Change Blossom Before Your Eyes is posted on Life of the Differently Abled.  It’s about having CP and being a blogger and it’s perfect for any Disability Blog Carnival but especially for this one.

Apparently, today is Cerebral Palsy Awareness Day (I didn’t know) which I’m sure you’ll agree is kind of important and what are milestones if not important?  Spaz Girl has written What I Want You to be Aware of on CP Awareness Day

Cynical Beauty is getting married this year which is pretty much one of the biggest milestones ever.  Her blog, Disability and I Do is about the planning and the thoughts behind it.  I particularly liked her post Should You Hide Your Scars On Your Wedding Day?  And if we’re talking about weddings I should mention that another crip getting married this year and blogging about it (amongst other things) is Mary.

That’s it for this carnival I think!  As always let me know if any links are wrong or otherwise don’t work.  I believe the next carnival is being hosted by Cheryl but I don’t know the details.

>I’m going to be hosting the 75th Disability Blog Carnival

>I’m going to be hosting the next edition of the Disability Blog Carnival.  That will be the 75th one and so I’ve chosen the theme of Milestones.  I am especially pleased to have the 75th as I also hosted the 50th!

Entries can be left in the comments here or sent to me via e-mail ejcrees AT googlemail DOT com please put DBC or some such in the subject so I know you’re not spamming me!

The carnival will take place on 25th March and it would be great if people could get entries to me by the 23rd although I’ll try and include ones received after that date.

If you don’t know what the DBC is all about, this is the current edition “Participation”.  The official home of the DBC is Disability Studies, Temple U.

>Stories and Disability – A Writer’s Perspective

>The theme for the next Disability Blog Carnival is “stories”.  Which as someone who is a writer is an interesting one.

At the last NaNoWriMo meet up, one of the others asked me if I wrote disabled characters.  And sometimes I do.  Sometimes I don’t.  With my last NaNo I didn’t deliberately because I almost always do when I do long pieces of writing and I thought it would be a good thing to not do for once.  I’m not sure why I thought that.  Possibly because writing about disability is writing what I know and I wanted to stretch myself as a writer (which I do).

My script frenzy attempt from April doesn’t yet have a disabled character in it.  It’s currently abandoned but I’m considering returning to it, possibly more as a novel set up.  Weird things keep happening in this story line which can’t be explained.  I think a disability aspect may come in from that point of view.  I’ve already got one character suddenly acquiring children out of no where, I’m thinking a life long wheelchair user who no one else remembers as ever using one before might be interesting.

Anyway, the other comment she made was to ask whether I found including the disability made things difficult with the plot.  Her example was that she’s diabetic and often starts off with characters who are diabetic too. Then the plot calls for them to miss a meal and so the diabetes has to come out because they two don’t work together.  I found that an interesting question.  This blog entry is my a bit more thought out response not what I told her in person.  In no way is it meant to be a criticism of my friend.  We just have different perspectives, that’s all.

I’ve never even considered changing a character that fundamentally so the plot will work.  My disability is a part of me.  I wouldn’t be who I am if I didn’t have it.  I would be completely different because my whole life experience, frame of reference and everything like that would be altered.  There is almost always a way of making things work in real life despite the disability and I don’t think fiction is any different.  My characters are who they are – and if they’re disabled, that can’t be changed (or shouldn’t be changed).

Maybe it’s because I don’t plan my plots rigidly before I start writing and let things grow and change as they need to. But I can’t imagine not being able to make a disabled character “work” because changing it isn’t possible in real life.  And to me I want my writing to be realistic wherever possible.

As a final point I will say that I suspect part of the reason why we have such differing perspectives is because her condition is acquired and mine is life long.  It’s probably easier to consider making such a huge change to your writing when you do know “before” and “after” then when you don’t – acceptance is different for both groups of people, perhaps.