“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)

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

The Memory Book by Rowan Coleman

So I made a conscious decision that I wasn’t going to go on NetGalley for a while.  And I was really good.  I didn’t go on it and I ignored all their emails inviting me to read books and suggesting ones I’d like.  Then at stupid o’clock last Saturday night/Sunday morning when I really should have been in bed I decided enough was enough and I’d go and see what books they had that I might be able to review.

And so my quick five minutes look before bed turned even longer when I requested All The Books.  Several I was turned down for but luckily for me Ebury approved me for a copy of The Memory Book by Rowan Coleman so I could review and blog about it.

If you’re one of the people who sometimes asks me for the name of a really really good book to read don’t bother to read the rest of this just go and buy it right now.  I loved it and read over half of it in one sitting.

The name of your first-born. The face of your lover. Your age. Your address…
What would happen if your memory of these began to fade?
Is it possible to rebuild your life? Raise a family? Fall in love again?
When Claire starts to write her Memory Book, she already knows that this scrapbook of mementoes will soon be all her daughters and husband have of her. But how can she hold on to the past when her future is slipping through her fingers…?
Original, heartwarming and uplifting, The Memory Book is perfect for fans of Jojo Moyes.

I must admit that as much as I was really excited to read this I did put off doing so.  I’d had a really stressful day on Monday when I got it and I was so tired.  And amongst all the good things I’d heard about The Memory Book I’d kept hearing that it was a real weepy.  So I figured that wasn’t the day for that book.  It’s definitely a bit of a sad one in places but I found it more bittersweet than really sad.  But then I don’t often cry at books so I’m probably not the best person to advise on whether it’ll make you cry or not.

It did make me smile and in a few places it really really made my laugh out loud. Then I wondered if I was meant to be laughing at that.  Claire has a real gallows humour thing going on in several places in the book which I liked.  It reminded me a bit of my own disability humour but with a darker line to it.

Here’s a quote I liked:

 “I turn and look at the receptionist for one last moment, and I know this is absolutely the right time for me to come out with a witty and stinging one-liner that will make her see I am not a pitiable person and not just a disease.  But nothing comes to mind, which reminds me, only too clearly, that I am both.”

That moment when someone says something and on the spot I need to say something to make them change their mind and see more than my wheelchair is one I know all too well. I don’t find it painful, just really annoying but Claire’s all to obvious pain in this situation comes accross very clearly in the book and makes her and her situation seem all the more real.

Part of me would like to read more about Claire and her family and especially about her daughters Caitlin and Esther (Recently I’ve been writing a lot and struggling to name characters. Esther isn’t a name I’d thought much about but as I was reading this book I was struck by how nice it is. It doesn’t work in what I’m writing though).  There are a few loose ends in the book and that surprised me but at the same time I don’t want to read more about them because The Memory Book was perfect as it is.

Finally I’ve decided that seeing as how I love quotes my book reviews should contain more of them.  This is one that cracked me up.

“And I wish I’d run away with a bra on: there is something far less assertive about running away knowing that your breasts are bobbing up and down and completely out of control, flapping around like a pair of kippers. But there you go.  When you’re forced to break out of prison, you don’t always have time to consider your underwear options.”

 

Rekindled

I’m reading a good book at the moment.  I hope to finish it tonight and I’ll review it for my blog in the next few days most likely.  When I flicked to the back to see how many pages it has I noticed that on the page after the end of the story there is the following quote.

“Sometimes our light goes out but is blown into flame by another human being. Each of us owes deepest thanks to those who have rekindled this light.”
Albert Schweitzer

I’ve had a tough year I think it’s fair to say.  And things are greatly improving and I feel like I’m not in the best place I’ve ever been in but I’m certainly in a much better place, possibly even a good place.

I love quotes as anyone who has read my blog for a while will probably realise.  This resonnated with me a lot.

I’ve spent time this year feeling as though I was worthless.  As though the ridiculous disablism I experienced at the hands of the NHS (something I don’t think I ever shared fully on my blog and I doubt I ever will) destroyed my self esteem and confidence.  It’s coming back but I still feel more fragile and a lot less confident than I used it in some ways.

Putting myself back together isn’t something I can do alone though – I’m only where I am now because of the people who “blew my light into flame” if you will.

My family.  My friends. The ones who get the problem when I explain it and the others who get my text and immediately text back “oh fuck.” because that’s all there is to say and they know I can’t handle being told not to worry. The ones who point out the bigger picture.

The people from the You Know You Have CP When… group for providing me with a sense of solidarity and understanding I’ve not felt in a long time (seriously, 300+ CPers – you know you can post and at least one other is there to say “yup, been there.” HUGE.).

The people who had nothing to do with what happened but tell me the way I was treated was unacceptable and they’re sorry and will see what they can do. The guys at one of my favourite Oxford venues who at a point on Sunday when I was about to lose it inadvertantly made me laugh.  Those who lurk in the background.  The ones who deny they’re doing anything special. And, sadly, the ones who show their true colours making me realise I can’t trust them as much as I thought I could.

Those who do things I would never expect.  On Sunday the Oxfordshire NaNoWriMo kick off meeting was at a venue I’ve been to once before but not since I’ve had this chair.  I’d forgotten that the entrance wasn’t properly ramped which meant I couldn’t get in as trying to go up it triggered the safety cut off thing.

My friend is one of the organisers this year and came over to see what was up. She said she was really sorry (to which I said it wasn’t her fault) and that next week we’ll go to another venue which has great access plus totally rocks. By this time I’ve got the cafe owner trying to make stupid suggestions of what I can do to get over it (it’s a mechanism which kills all my momentum if I try and go up something particularly steep to prevent the chair tipping and it can’t be overridden or pushed past  “Go as far as you can then stop and try again and “go backwards” won’t work). When my mate then asked what about now I said I was leaving because I couldn’t handle any more faffing and knew I’d cry if I had to.

10 mins later I was almost to the station when I had a call saying was I on the train yet because all 14 of them were leaving the cafe for the accessible venue. I went back to meet them and got there before them. Two of that 14 are my friends and three others I’d met briefly before. I was blown away that a group of mostly strangers would do that for me. Hell in the past I’ve had difficulty getting groups where practically everyone knows me to use venues I can access.

I try to always say thank you to those who prop me up and support me but I fear I’m not always clear or successful enough.  My light wouldn’t have come back anywhere near as quickly if not for all the people who surround me.

Thank you.

Sunset



“Sunset and evening star,
And one clear call for me!
And may there be no moaning of the bar,
When I put out to sea”
Alfred, Lord Tennyson


(visual description: two photos of the sunset over the reservoir after sailing this evening. The top one was taken earlier so the sun is higher and reflected on the water. In the foreground some people appear in silhouette. The second was taken perhaps 15 minutes later. The sun is much lower and the clouds are more obvious. Our accessible pontoon is in the foreground. These are the same photos I posted on Facebook earlier).

♥ Emma

Quote

Quitting is not giving up, it can be choosing to focus your attention on something more important. Quitting is not losing confidence, it’s realizing that there are more valuable ways you can spend your time. Quitting is not making excuses; it’s learning to be more productive, efficient and effective instead. Quitting is letting go of things (or people) that are sucking the life out of you so you can do more things that will bring you strength.”
~ Osayi Osar-Emokpae.

♥ Emma

A few quotes

I have a free quote of the day app on my iPad. It shows three quotes at a time. Today’s, yesterday’s and a random one. Today I thought all three were worth sharing.

“One man with courage makes a majority”
~ Andrew Jackson

“Success isn’t the result of spontaneous combustion. You must set yourself on fire.”
~ Arnold H Glasow

“For everything you miss you gain something else and for everything you gain you miss something else.”
~ Ralph Waldo Emerson

>The Lion’s Den

>I was thinking about my favourite quote earlier because it’s part of my focus for the year (something I need to blog more about). This is inspired by that quote and I hope it works. The quote is right at the end of the piece. I think it’s a great one for disabled people like me.

Also: day 7 of my 100 days of writing! Given the level my depression was at the fact I’ve made it this far is huge. I really wanted to do this but equally I wasn’t sure I could. It has been tough to find the motivation on several of he days but once I get writing I’m really enjoying it.

The Lion’s Den

Listening to the roar of the lions – terrifyingly loud from the safe distance of 25 metres where the audience waited and watched – you’d be forgiven for thinking that there were just two people working the Lion Life show who displayed true courage. The Lion Tamers. But you’d be wrong.

They had nerve, of course they did. And confidence. Those were the two most important personality attributes of a lion tamer. That and a hell of a lot of knowledge and skill, a dash of calmness and a burst of speed at just the right time and place were all you needed to be a lion tamer. Courage wasn’t required. Courage when mixed with adrenaline and adoration (both a staple part of any zookeeper’s daily routine) could sometimes lead to brashness and overconfidence. Accidents and tragedies were the all to frequent outcome when that happened.

When you arrived at the Lion Life show, that was when you met the most courageous staff member. Quiet and shy with a tendency to let her hair fall in front of her face so she could hide behind it. Most people speak to her but few notice her. And fewer still remember her. She was the ticket seller.

Years of ridicule, teasing and even physical attacks had left her depressed and suffering panic attacks. Leaving the house had been impossible for sometime. And then eventually with a lot of patience, love and support she had been able to start going out again. Then a few years after that the idea of a very part time job hadn’t been as scary as when it was first suggested.

She loved her job. She really did. Or at least most of the time. On the face of it, it was an easy job. Getting there, dealing with the public, staying out all day. She found that a struggle. At times it felt insurmountable and she’d go home in tears convinced she couldn’t do it. The next day, somehow, she would be back in her little ticket booth near the lions trying again

Everyday her family told her they were proud of her. Every time it got tough she’d try to remember that. And to remember that courage doesn’t always roar. Sometimes courage is the little voice at the end of the day saying ‘I’ll try again tomorrow’ (Mary Anne Radmacher)

>Quotations

>I’ve always loved quotes.  I’ve loved them for as long as I can remember.  And on and off since I was 13 or 14 I’ve kept journals of quotes.  At the moment I’ve not got a quotes book on the go and haven’t for a long time.  It’s something I really want to start again however.  I love the moment when I read something and it just clicks, calls to me even and means something to me.  It might be that it makes me laugh, it might make me think, it might sum up what I want to say or how I’m feeling or it might fit a particular situation.  And sometimes I just add a quote because I like it and want to remember it.

Yesterday and today I’ve seen quotes that fit the apt and I want to remember them categories.  One was whilst looking at the beginning of a book to see if I want to read it (answer yes but not yet) and the other was when I clicked a link on twitter, ended up on an interesting looking site and found a quotes page on it.

In lieu of a quotes book I thought I would share them here.  Actually, make that three quotes because I just googled one to find out more about it and found another on a quotes page.

“The only things that stand between a person and what they want in life are the will to try it and the faith to believe it’s possible.” – Rich DeVos

“Never give up, for that is just the place and time that the tide will turn.” – Harriet Beecher Stowe

“In life, the microphone passes your lips but once… you had better be ready to sing.” – David Foster

Worthwhile reminders for me at this point in time and otherwise just lovely words.  I hope other people reading this will find them as useful as I am.

>AAAAAACHooo!!!!

>A bad cold wouldn’t be so annoying if it weren’t for the advice of our friends.

Kin Hubbard (1868-1930), U.S. humorist

Like everyone else, when I don’t know what else to do, I seem to go in for catching colds.
George Jean Nathan, (1882–1958), U.S. drama critic


There is only one way to treat a cold, and that is with contempt.

Sir William Osler (1849-1919), Canadian physician
I signed up to do NaBloPoMo again this month.  Then I woke up yesterday morning with a scratchy throat and has become apparent throughout the day today, a cold.  
So I have very little motivation for blogging or thoughts of what to write tonight.  But one of my plans for this month was to share more quotes and write why I love them.  I wanted to save my favourites for sometime when I would do them justice so I went googling for quotes on “the common cold”.  Most of the ones that bought up were about the illness itself – medically I mean – and they were about 4% interesting and 96% boring so they just wouldn’t do.  These ones however made me smile and laugh a little so I thought I would share them.