“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.

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

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.

 

We’re all going on a quote hunt

I’ve been looking at disability statistics lately.  I wanted one particularly statistic and ended up getting sucked in by several different ones.  But that’s a story for a different blog entry.  One that I don’t feel like writing right now.  I was then thinking about one of those statistics and thinking that I’ve read a quote similar to it.  I was pretty sure I’d shared it here so I went hunting through my quote entries.  I don’t think it actually is here but I found several I’d forgotten about and thought I’d reshare.

“If someone asked you ‘can you swim a mile?’ you’d say ‘nah’. But if you found yourself dumped out at sea, you’d swim the mile. You’d make it.”

 

~Gertrude Boyle

“Disability is not a brave struggle or ‘courage in the face of adversity.’ Disability is an art. It’s an ingenious way to live.”

~Neil Marcus

Not only do physically disabled people have experiences which are not available to the able-bodied, they are in a better position to transcend cultural mythologies about the body, because they cannot do things the able-bodied feel they must do in order to be happy, ‘normal,’ and sane….If disabled people were truly heard, an explosion of knowledge of the human body and psyche would take place.

~Susan Wendell,
The Rejected Body: Feminist Philosophical Reflections on Disability
“People take different roads seeking fulfillment and happiness. Just because they’re not on your road doesn’t mean they’ve gotten lost.”
~H Jackson Brown, Jr
“It is only possible to live happily-ever-after on a day-to-day basis.”
~Margaret Bonnano

You Know You’ve Got CP When…

Went to get my blood pressure checked (normal and I suspect I’ve now had “white coat hypertension” added to my records given how very very high it was when I saw a new to me GP last week) and have some blood taken. The results of the bloods came back a few days later as “normal” which isn’t the most reassuring thing ever as I’d rather be told what they actually are along with the fact they’re normal. But that’s something to take up with the GP at a later date rather than the receptionist giving me the results.

Anyway I was talking to the healthcare assistant about the fact that years ago I was told by one of the nurses there not to let anyone try and take blood from my arms because my veins were buried and they wouldn’t be able to do it but the last twice they’ve drawn it first time from my arm.  I find it weird that for so long no one could get it out my arms and most wouldn’t even try (and then the nurse told me that and I stopped letting them try unless they’d tried and failed in my hands) but now suddenly they can again.

She wondered if I’ve upped my fluids or lost any weight?  So I was explaining that I have been trying to eat healthier and more sensibly (and to be honest not doing great at that lately but I didn’t tell her that) but that it was proving so hard for me to be weighed and causing so many issues I’ve decided not to focus on that any more.  I used the example of the NHS specialist weightloss service I went to a while ago and how they couldn’t cope with someone of my level of disability and just accused me of letting my disability stop me.

Immediately the healthcare assistant went “no! you don’t let your disability stop you Emma, you’re not sitting on your bum all day…”

And I went “well I am sitting on my bum all day…” and laughed

She went on to say that she meant I don’t just hang around at home doing nothing but I’m out and about all the time at CAB and other things.

I knew that’s what she meant but the way she phrased it originally just tickled me. One of those accidental things that able bodied people say that I laugh about when I point out to them but point out nonetheless because it’s a bit of a silly thing to say to a wheelchair user.

And then as I made my home I thought about the fact that it’s such a “wheelchair user” thing to say – to most people what she said would have been just one of those things but to me it was worthy of comment and kinda funny.

you know you’ve got CP when…

When Disabilities Collide

I recently met a disabled person I hadn’t met before. We were both at the same event. We spoke but only in the context of the group, about stuff to do with the event which had nothing to do with disability..   You know how they talk about gaydar? Well, if there’s such a thing as CP-dar this person really set mine off.  I don’t know that’s what their disability is but I’d put good money on their being a non-wheelchair using CP-er (or at least they weren’t using a chair at that point)

Today an email went round.  There’s this training workshop that sometimes happens.  The nearest place is London but this other disabled person apparently can’t get to London because of their disabilities and wants to go.  So the powers that be have discovered that if they can get a particular number of people who want to do it an extra one can be run locally. Did I want to do it?

Well, probably not.  I’ve not done this training workshop but I’ve done others and it appears this would cover a lot of the stuff I’ve done and is aimed more at beginners.  But at the point in time that email went round I didn’t know that.

What I did know was that I was gonna have to say no anyway if they moved it away from London.  Because I know the venue in London.  I’ve been there once before. Last time they paid for me to get a taxi to and from the station but I’ve also now figured out how to get almost all the way there on the tube due to going somewhere else so if I’m right about how close it is to there I could do that.

But I’m damned if I could figure out how I’d get to the small town about 15 miles away on the other side of the county.

I’m not going to do the course, now I’ve got the details it’s obvious not one I need to do.  Which is a really good thing because otherwise we’d have had two disabled people wanting to do it.

One who needed it to be moved out of London to somewhere locally to accommodate their disability and another (me) who needed it kept in London to accommodate their disability.

I think we can only call that when disabilities collide.  (Which is really making me think of the song “when love and hate collide”)