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“Special Needs”

Language around disability is a really tricky thing. Some terms are acceptable to some people and completely unacceptable to others. Some are fine for disabled people to use amongst themselves or to refer to themselves but problematic when used by strangers.  And there are times when disabled people argue amongst themselves about the terms.  People first language and identity first language are two of the biggest culprit’s there.

One term that I’ve been saying I don’t like and arguing against for the last few years is “special needs”  I can explain why I don’t like it but it’s something I find others always agree with although some people do come to see my point after I explain even if they don’t agree with me.  Basically as a disability specific term it makes no sense.

For the last few days I’ve been reading The Curious Incident of the Dog in the Nighttime by Mark Haddon.  I finished it this evening and it’s safe to say it’s one I’ll be thinking about for a fair while.  The main character is Christopher, a teenager with Asperger’s Syndrome.  I’m not qualified to comment on his portrayal – I liked him as a character but I’ve heard and read various things from people who are on the autistic spectrum that it’s quite problematic. Which unfortunately isn’t that unusual when a disabled character is in a book.

But that’s not what I wanted to blog about.

There’s a moment in the book when Christopher is talking (as narrator) about the term “special needs” and it basically sums up what I’ve been saying about why I don’t like the term. It was a big “yes!” moment of validation for me. So instead of explaining my dislike I wanted to share the quote. It’s one of those that if I was sharing a link to it on twitter I’d probably just caption it “this.”

“All the other children at my school are stupid. Except I’m not meant to call them stupid, even though this is what they are.  I’m meant to say that they have learning difficulties or that they have special needs. But this is stupid because everyone has learning difficulties because learning to speak French or understanding Relativity is difficult, and also everyone has special needs, like Father who has to carry a little packet of artificial sweetening tablets around with him to put in his coffee to stop him getting fat, or Mrs Peters who wears a beige-coloured hearing aid, or Siobhan who wears glasses so thick they give you a headache if you borrow them, and none of these people are Special Needs, even if they have special needs.”

– From The Curious Incident of the Dog in the Night-Time by Mark Haddon (chapter 71, page 56)

I is for…

I is for Impossible

As a disabled person and particularly as one who is both life long disabled and a woman there can be a lot of barriers in my way.

Actual physical access is the big one although awareness of that and facilities are improved a lot and the amount they’ve changed just within my lifetime is huge.  That’s not to say there isn’t a long way to go because there is.  I just read an interesting blog by Anika about that.

Attitudes and awareness are in many ways a much bigger barrier.  If people refuse to understand why I can’t be carried down a flight of stairs or tell me to stop making a fuss then access can’t improve because they don’t understand.  And understanding is huge.  I recently tweeted a shop in a town I was going to visit and asked if they were accessible.  They replied “the shop is wheelchair accessible, just a step to get in.”  Which, if you know about wheelchair access you’ll know means it, in fact, isn’t accessible.

Today I’ve been trying to book a weekend away.  I’m undecided about where I want to go and after poking round and places to go and things to do I took a look at hotels.  The website of one of the chains didn’t have exact accessibility details online and their twitter person told me I had to phone the actual hotels I was interest in.  The first had accessible rooms but not ones that I can access. So then I had to phone the other hotel.  That does have rooms that meet my needs – in fact all of their accessible rooms meet my needs – but it’s a way away from the centre of town and all the places I thought I might visit.  That town is doable in a day from here so I’ll maybe do that instead.  And as for a weekend away I think my second choice of city to visit might be back in the running.

And sometimes my own attitude and experiences can be a barrier to doing things. After 30+ years as a wheelchair user it’s easy to be jaded and think “the last time I travelled to that train station things went wrong” and not go there again.  Or “I heard that chain has a terrible rep for access, I’ll give it a miss”.  I try not to but it’s easy to fall into the trap.

People will often tell me not to do stuff – that I won’t be able to.   I have a bit of a habit of proving them wrong.  I used to say people should never tell me I couldn’t do stuff because it would just make me determined to prove them wrong.

Now I am older and perhaps wiser I rarely say that.

I can and do point out to people that I can do things they think impossible for me.

“This isn’t recommended for people with mobility problems due to long distances involved” – not a problem I use a powerchair and it’s got good batteries.

“Sorry, there isn’t accessible tube on the route we’re taking, so hope you don’t mind not coming” – if I get the train to a different station I arrive in London at a place that does have accessible tube, I’ll meet you there.

“don’t go in there, there’s no room for you to turn round you’ll never get out.” – I can reverse my chair that distance and turn when I’m outside.

It can and often does take a lot of creativity, some courage and most of all bucketloads of determination but I find that despite what many people think there will always be barriers in may way there’s not much that’s truly impossible if I really, really want to do it.

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

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

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.