Category Archives: disability

Rotation Curation for #Disability #rocur

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

 

Three Amazing Things About You by Jill Mansell

Three Amazing Things About You by Jill Mansell

I received a free copy of Three Amazing Things About You by Jill Mansell to review on this blog.

From the No. 1 bestselling author of THE ONE YOU REALLY WANT comes a poignant romantic novel about a young woman whose time is running out. Not to be missed by readers of Jojo Moyes and Erica James.

Jill Mansell’s enchanting new novel will drive readers to seize life with both hands and make the most of every minute…

Hallie has a secret. She’s in love. He’s perfect for her in every way, but he’s seriously out of bounds. And her friends aren’t going to help her because what they do know is that Hallie doesn’t have long to live. Time is running out…

Flo has a dilemma. She really likes Zander. But his scary sister won’t be even faintly amused if she thinks Zander and Flo are becoming friends – let alone anything more.

Tasha has a problem. Her new boyfriend is the adventurous type. And she’s afraid one of his adventures will go badly wrong.

THREE AMAZING THINGS ABOUT YOU begins as Hallie goes on a journey. A donor has been found and she’s about to be given new lungs. But whose?

Here are Three Amazing Things about me:
1) I had a brilliant day catching up with a friend yesterday
2) I was completely and utterly blown away by The Royal Albert Hall and Cirque du Soleil
3) I read this book almost cover to cover whilst on the trains and then finished it when I was home.

OK so those are three amazing things about my day yesterday really. I was very intrigued by the three things idea in this book and might have a think about what my three things actually would be.

I think the most important thing for me to say in this review is: this is a book about a disabled character. But Hallie is not a token crip, she’s more than her disability. And it’s done very well. If you’ve ever heard me rant about the lack of books with disabled characters let alone ones in meaningful roles you’ll know how happy that made me.

This was a lovely book to read and despite its subject matter I didn’t find it sad at all. It did feel poignant at several points and as though you’re waiting for the other shoe to drop. Because one of the characters is Hallie’s donor and every so often in the book something would happen and I’d wonder “is this it? Have we got to the transplant? Is this character the donor?” I got invested in the characters but I almost didn’t want to.

Sometimes chicklit has a reputation as being fluffy and light and completely lacking in substance. And that’s definitely true of some books. It’s not true of Three Amazing Things About You which is fun and enjoyable and very definitely chicklit but which has substance and punch and the ability to cover a very sensitive subject in just the right way.

Emma, Elsewhere

Emma, Elsewhere

If you were looking for a blog post from me today you’ll have to wander over to Disability In Kidlit where a discussion post I contributed to has just been published.

Say What You Will is a YA book by Cammie McGovern where one of the main characters has CP and the other OCD.  If you’re like me and in the UK you’ll find it in book shops under the title Amy and Matthew.

***This link contains spoilers but this post on my blog hopefully doesn’t***

Emma Crees, Courtney Gilfillian, and s.e. smith review SAY WHAT YOU WILL

I really enjoyed the discussion and getting to chat with Courtney and s.e.  It’s a long time since I’ve got to chat disability with knowledge people with similar views to me.  And to get to do it in the context of a book was even better.

I liked the book more than I think comes across in the review until I started thinking in depth afterwards about how sucky the disability aspects were. I don’t think I’d recommend it though.

It was obvious from the word go that the disability stuff was a bit OTT and bad but then when I started chatting with my fellow contributors and thinking about the whats and whys.  I think it’s easy when you’re reading a book and caught up in the plot to overlook the sucky bits but not when reviewing and discussion.  And I wouldn’t want a teen I cared about with either CP or OCD (or actually any teen) to think the portrayal of the characters and the way they were treated was OK.

Polite Small Talk

Polite Small Talk

I meet usually at least two new people each week through CAB.  If I see them as clients I can often find out a lot about them.  They rarely learn much about me.  I do tell them my  name but often that and the fact I’m sat there in a powerchair is all they learn about me.

I also do resident involvement stuff with the housing association I rent from.  I’ve made one really good friend through that and I’m friendly with several others.  But I’ve met loads of people there.  And also because I’ve done disability awareness talks there for staff and tenants there have been a few occasions where I’ve had to stop people and say “sorry I don’t know your name.” and it’s been a case of “oh I forgot we hadn’t be introduced, I was at the such and such talk you did.”

The thing about both situations is that they lead to a lot of polite small talk.  I’ve never been a massive fan of Polite Small Talk.  And it came to me recently that most of the Polite Small Talk I experience is actually quite ableist.  Well, actually it came to me this evening when I was thinking about writing a ranty blog called “it’s ableism when…”

Today I was chatting with a taxi driver on the way somewhere. Started off he was saying how much easier my chair is to secure into the taxi than a lot he gets and then he was telling me about going somewhere with a disabled friend of his and the venue not knowing how to cope.  What was I planning to do when I got to my destination? That sort of thing.  But then his next gambit in the Polite Small Talk that filled my journey (and which until that point sounded interesting because I’d been hearing about the friend incident and thinking “I must look into this group.”) was “so how long have you been in a wheelchair?”

Ableism disguised as Polite Small Talk has also recently taken the form of “so what do you do?” perfectly reasonable and the follow up “how do you get there?” was also acceptable. But then it was third time’s the charm for the apparently necessary ableism component when they then expressed obvious surprise at the news I go in my powerchair with “oh you can do that by yourself can you?”

In years past there’s also been a rare gathering with my family and another.. Work, and “I hear you’ve a new place” and such like were used for the rest of my family.  I got the all time Polite Small Talk gem of “so have you been affected by any of the disability cuts?”  implied in that was not only “I don’t care enough about you to want to know anything personal about you.” but maybe even “I hope so you lazy scrounger”

And finally, another throwback.  It’s gotta be the always annoying “oh but I was really hoping you could come.” and/or “but it’s only 2/4/15/245 steps we can help you up them, I’ll be really disappointed not to see you.” whenever I decline an invitation because the venue isn’t accessible.  If you really wanted meant that and were really hoping I’d come you’d have found an accessible venue.

(I’m wondering now if I’ve ever blogged the story of how the words “oh don’t let that stop you.” basically changed my life but not in the way the idiot who said that expected)

On knowing other wheelchair users

On knowing other wheelchair users

Recently I was in a coffee shop waiting for a friend.  I’d gone a bit early to do some writing (which didn’t happen in the end) and as I was queuing for a drink a very vague acquaintance was in the queue in front of me.  They turned and said Hi.

I said hello and asked how they were and we chatted a bit.  Briefly but friendly, but not really involved.  I don’t know this person and I don’t think we have much in common so I guess that’s how that’s going to stay.

They then mentioned having seen someone we both know recently who for the purposes of this blog I’ll call Dan.  Dan had recently been in an a bit of an accident from what they were saying.

My acquaintance and I first met at a workshop that was facilitated by a guy called Dan.  So I was sure that was who they were talking about.  I haven’t seen Dan in maybe two months but some of what they were saying about wasn’t adding up.

Until I realised that the Dan they were talking about was obviously a wheelchair user.  And the Dan I thought they were talking about (mutual friend) isn’t a wheelchair user.

I don’t know this Dan who uses a wheelchair.  I know there is a guy called Dan who lives near me who uses a chair.  Because of a very vague connection like his mum lives near a good friend of mine and my friend has done the “nod smile and wave” thing a few times when we’ve been out and he’s wheeled past then turned to me and said “that’s Dan…”

Maybe it’s him and maybe it’s not but if it is I’m not sure I’ve ever spoken to him beyond saying hi if he does when I’m with my friends.  I don’t know anything about him.  He’s not my friend and really I don’t think I could call him an acquaintance either.  I don’t think he’d know me if you said “Emma” to him, or even if you said “Emma in the wheelchair.”

I’m sorry but it really winds me up that just because I’m in a wheelchair people assume I know someone else who is in a wheelchair let alone that I’m friends with them.

I have lots of friends.

Some have disabilities and use wheelchairs

Some have disabilities and don’t use wheelchairs

Some are nondisabled.

In pretty much all the cases of friends who are also disabled I have much more in common with them than the fact we both have a disability even if we originally met through a disability group or sailability or something else disability related.

I don’t automatically have to be best friends forever with someone else who spends their life on wheels.  And don’t fucking other me by assuming that I do.

In fact earlier this week I had a dealing with another wheelie and I thought “sooner I don’t have to deal with you any more the better” because they were horrible to someone I really care about.

All my acquaintance had to do was start this conversation with “so do you know Dan?” and it would have been completely different.  Because not only would they have known from the word go that I don’t know Dan (something I never mentioned because I didn’t want to prolong the conversation when it got to the nature both got our drinks stopping point) but I wouldn’t have been confused.

And hopefully I wouldn’t have been told the (luckily not very personal) details of the very bizarre sounding accident of this wheelchair user called Dan who I don’t know but may or may not be the one whose mum lives near my friend.  And who might not have wanted a complete stranger told about his wheelchair breaking accident.

I wouldn’t have done.