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 in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

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

>What About The Boy by Stephen Gallup

>A few months ago I had an e-mail from Stephen asking if I wanted to review his soon to be self published book (it’s out in September).  You can read more about the book on Stephen’s blog  or find it on Amazon.

Here’s the text on the back:

Nobody knew what hurt little Joseph, and no one was offering a way to help him. He cried most of the time, and thrashed about as if in pain. He wasn’t learning how to crawl, talk, or interact normally. Doctors told his parents to seek counseling, because nothing could help their son, and the quality of their own lives was at risk. Refusal to accept that advice changed their lives forever. WHAT ABOUT THE BOY? A Father’s Pledge to His Disabled Son chronicles a family’s rejection of hopelessness and their commitment to the pursuit of normalcy.

The day this book arrived a friend was here and we both looked at it and agreed I would either love it or hate it.  In reality it had both good and bad bits and I can’t say I loved it or hated it.  It was interesting and definitely has a way of drawing you into events and holding your attention.  Towards the end I did begin to be very frustrated by the book however as the author shared some views the total opposite of what I agree with and which I found shocking.

The other thing my friend and I were discussing looking at the book was the title – What About The Boy?  I took that to mean that it was about a fight with medical staff etc to see Joseph for who he was and to give him the chance to be a little boy – to do fun things and have more in his life than just various different therapies.  However I hated the use of The Boy in it and thought What About Joseph would have been a better title.  Because, just like me and everyone other person disabled or otherwise, Joseph deserves to have who he is recognised – using The Boy struck me as a touch of depersonalisation. My initial ideas based on the title proved not to be quite right. Unsurprising, I’m sure you’ll agree.

Apart from a few stylistic errors this was quite well written.  To be fair, what I consider errors or inappropriate wording might not have been but instead been the difference between English and American – such as the use of the term “hurt children” to refer to kids with disabilities. In England that would be pretty much unacceptable in that context as it’s not a social model term.  But it’s my understanding that America is much more medical model based so maybe it’s acceptable there.

I find myself somewhat wary of recommending this book because some of the practices Joseph’s parents tried in efforts to help him strike me as naive and at times downright dangerous.  Joseph’s parents showed a lot of people the alternative therapy they’d been shown how to do – including some doctors.  I was very surprised that 1) Joseph didn’t end up injured at any time because of it and 2) nothing happened when they showed the doctors other than them being told to stop wasting their money and time.  But… that said there’s nothing to say that didn’t happen and just didn’t make it into the book.

NOTE: I am deliberately not mentioning any of the therapies used because I don’t condone them as a whole (a few sort of make sense but not when applied in the extreme) and don’t want people coming to my blog looking for info on them.

On the whole I would say this is a very interesting read and it kept me involved the entire time. The love for Joseph shines through the book and the level of dedication shown to him is to be applauded.  I’d say to read this if you want to gain an idea of what it can be like to be a disabled person and especially to be the parent of a disabled child.  I wouldn’t recommend this book if you’re looking to it for treatment options simply because as I said above I personally don’t condone the treatments – although I don’t know enough about them – and all such decisions should be based on more than just anecdotal evidence.

I’m glad I read this book because it made me think a lot and consider a viewpoint very different to what I believe in.  I’ll probably check back on Steve, Joseph and the rest of the family from time to time on their blog because the book made you care what happened to them.

I plan to see if my mum wants to read the book because I’d be interested in her take.  I’d also love to hear what other disabled people and parents of disabled kids think of it.

>A Few One Month Before Heartbreak Links

>I am very tired and need to go rest (waiting for my dinner to finish cooking and my mum to pop round or I’d already be in bed with a book or in a heap in front of the TV).  But I just wanted to highlight how amazing One Month Before Heartbreak has been.  I’m completely and utterly blown away by what we’ve done and the support we’ve had.  If you google “One Month Before Heartbreak” you get more than 13 thousand results.  13 THOUSAND.  that’s seriously mind boggling.

I’ve not had time to share very many links or to do more than skim the posts that I’ve been scheduling to the blog.  I know that Bendy Girl is also exhausted but pleased.  We aren’t stopping, we’ll continue as long as we have submissions so please keep them coming!

I thought that I might highlight a few links that have caught my eye.  I’ll probably do this every day for the next few days as I go through and read and digest.

You Will Never Take Away My Shoes

Loved this post!  It reminded me of the “I will wear purple” poem

The Best Thing DLA Allows Me To Do

As a former RDA member myself (I went for 14 or 15 years and only stopped when I went to uni) I was nodding along as I read and smiling as it brought back memories.

Take Two

Heather and I are blog friends.  Reading this post gave me new insight into her and her family.  I hadn’t realised how long she’d been dealing with DLA etc.

Why I Keep Trying.

Totally blown away by this post.  I didn’t expect the level of support we got from non disabled people.  Hoped for it but never really expected as much as we had.

Disability cuts don’t affect me

Love the honesty in this post and even though we are in very different situations I could relate to a lot of it.

I will post more links tomorrow, my concentration is shot from all the  work I’ve done this weekend and I can’t give the contributions the attention they deserve

>Melting Pot of Links

>To celebrate the fact that I upgraded to the latest version of wordpress and not only is it working properly, it’s the first time in about six months I’ve upgraded and not had it go slightly wrong… I thought I would share a few links (because working WP means I can use the VRE and not code the links myself, yay!)

Nelba over at Chocolachillie wrote a post about perspectives to medical care and disability and life in general (I guess).  It’s well worth a read.  And it’s called Cheap Shoes Always Squeak which is just the best blog post title I have read in, basically, forever.

Kathryn’s Ryn Tale’s blog is always worth a read.   She makes me think and I like blogs that make me thing.  From The Outside In touches on a topic that I have wanted to write about for a few weeks now but obviously does it much better than I ever could.  Still when I’m over this random viral thing I seem to have I will give it a try.

Pedestrian Hostile held the latest Disability Blog Carnival.  It’s theme was Simply The Best (does anyone else get a mad urge to run around the house singing Tina Turner when they read that or is it just me?!).  I need to find some time to read more of the contributions but absolutely loved the ones I read so far.

If someone could tell me the name of the song in Moulin Rouge that goes on about how “We Could Be Heroes” (forever and ever…) I would love them for at least the next day or so.   Because The Goldfish wrote a post of the same name and now I have the song in my head.

>Simply The Best

>The next Disability Blog Carnival is on Thursday and it’s theme is “Simply The Best”

I love this as a topic and was thinking about what to write about. Several ideas crossed my mind but nothing really seemed *right* to me.

Then just as I had written off this as a topic that wasn’t for me, it hit me.

The thing that had made me happiest today had a no longer really noticable to me disability beginning and that’s what’s Simply The Best.

At this current moment in time, I would say that meeting people who would never have come into your life if not for your disability is Simply The Best thing about having CP.

My oldest friend, Maryse, was my physio when I was nine. We are still close now even though we haven’t seen each other since 1999 and she lives in Germany. No CP would have meant no physio and that would have meant I never met someone who I love dearly and who was a confidante and a trusted adult whilst I was growing up – and who was able to turn the trauma of physio into something I looked forward too.

Then there is Ruth. She was disability support coordinator when I was at college doing A’Levels. She helped me learn an important lesson about other people, about attitude and about self worth. It was a tough time that led to that incident and it was disability related. Take away the CP and the circumstances would have been different. But I am glad I learned those lessons – I have friends who tell me they wish they knew them too.

Some of my best friends I met thru disability activities or because they were my or my friends carers. Some of them I was paired with at school so we could receive support together – at the time I hated that, and I hated a lot of them because I resented being made “different”. I got over that, they became friends and the rest as they say, is history…

Or it could be the journey care assistants at my local stations… I couldn’t exactly say they were friends but they always say hi when they see me, stop me in town, ask how I am, make me laugh, hug me (sometimes) and occasionally fight over who gets to help me on and off of the train. Knowing I can trust them really helped me when I first started traveling independently on the trains. They are all really good people and they brighten my day.

But if it wasn’t for my chair – they would just be “station staff” and so I have another reason to be grateful for CP, more people who touch my life in a simply way and enrich it so much.

Before I went to university I had academic support at school (learning support assistants) but I had never had a true carer from outside of the family. I was a little nervous about that. But mostly nervous about the going to uni thing as a whole.

Incidentally, I realised (and was a bit shocked by) totally by accident this morning whilst surfing facebook and looking at Birthday reminders that the day I left home and went to uni was seven years ago TODAY.

My first ever carer was Kim (this entry has the story of when I met Kim and my first day at uni). She drove me a bit crazy but we got on well and grew to be very close. Unfortunately, as happens I lost contact with her for several years. Last week we got back in touch through FaceBook and we e-mailed.

Tonight I rang her and it was so wonderful, curled up on my bed with the window open and a breeze drifting over me. It was dark and the only light came from the twinkling of my fairy lights round the window. Just me and a phone, talking to a much loved friend who brought back so many memories, who helped to shape those memories too. I reckon it must be at least four, if not five, years since we spoke. It could have been yesterday.

We made plans to meet up and catch up the Saturday after next. I can’t wait.

And I was left thinking that whilst there are many small things and experiences CP has brought into my life. For me, what is Simply The Best about being in a chair is the wonderful people that are and have been in my life because of it.