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”)

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.”

 

In which I get Ranty

(subtitle: and lose my shit all over the Internet.)

This is ridiculous. In fact It’s the most stupid thing ever and frankly I probably shouldn’t dignify it with a response but I can’t let it go.

There’s an American company called 3eLove. They sell a range of products with their logo on – the logo is a wheelchair symbol like you see on many different things but with the wheel replaced with a heart. It’s called the wheelchair heart.  I can’t remember if I’ve blogged about it before or not. Their products have a variety of slogans on as well as the wheelchair heart.  In 2012 my parents gave me a sum of money instead of a Christmas present asking I buy myself something special that I wouldn’t usually buy for myself.  I bought myself a wheelchair heart necklace and I really like it (prior to shit that went down yesterday I probably would have said I love it but…). If you look at the pictures of my brother’s wedding you can see I’m wearing it there (I’m not sure how clear it is though). A lot of my friends have quite a few 3elove products but the necklace is the only one I have. I’ve not seen anything else they do that really called to me like that did and made me feel paying postage from the US to here was worth it (seriously, yesterday a friend linked me to one of their tops and told me how much she was paying to get it shipped here and all I could think was “I could buy a second top for the cost of postage if I bought it from a UK place” But obviously that’s not the company’s fault).

So anyway I kept hearing that yesterday (20/01/2014) was going to be Day of Acceptance run by 3elove.  And this apparently was a Big Deal.

I’m not a fan of “awareness raising” and the like and days that do that because I’m not really sure that they achieve anything that can’t be achieved by just being seen and doing and living.  I’ve written about that several times before – here is one example and there is a link to more in that entry. So I was hearing a lot about it and I sent a couple of tweets.

I tweeted:

#dayofacceptance is really poor activism and a thinly veiled way for @3elove to market themselves. Don't Other me this way #Disability

— Emma (@FunkyFairy22) January 20, 2014

and then I sent some unrelated RTs and chatted a bit with a twitter friend about stuff including what I’d just tweeted.

Then I tweeted

I don't want or need a #dayofacceptance. I deserve seven. Monday. Tuesday. Wednesday. Thursday. Friday. Saturday. And Sunday. (@3elove)

— Emma (@FunkyFairy22) January 20, 2014

Here’s the thing: I don’t want one day a year where people go out of their way to accept me and my disability and make a big deal of it. I want to be accepted every single damn day there is and I want it to be normal. You know I don’t want people bothering to tell me that my having CP is acceptable to them.  By making a big deal of it it makes me different to those in the majority and Others me. (Othering is the process by which we use an action of similar to class particular people as different and “not one of us” see this link for more detail).

I suspect a big part of this comes from medical model versus social model and cultural differences. But lets just say that those two tweets which were just random thoughts didn’t go down very well.

By my last count I’ve had tweets disagreeing with me and telling me I’m wrong from four different people.  Two of whom decided to troll me and keep telling me I was wrong. The reason I was wrong? Well, basically because I didn’t agree with them and that was just wrong. I was missing the point. I was wrong. I’ve not been able to determine what the point I was missing was because explanations haven’t been forthcoming let alone ones that actually make sense. (I RT’d a few of them and several of my followers went “yeah… makes no sense.”). Never mind I was wrong, I was hurting my followers by being wrong, and bringing loads of people down.  And most importantly I was completely wrong.

I am more than happy to have these sort of discussions if people take the time to say “well to me I see this as XYZ why do you see it differently?”

It’s also been suggested by the trolls that I need to accept myself.  I don’t know how I can do that when I’ve been in a wheelchair my entire life, would hate to be anything but and would turn down a cure if one should magically appear. My wheelchair is a huge part of my identity as well as being a part of my body.

Acceptance. Dude, it’s a journey not a destination but I’m pretty much all ready there and have been my entire life. Just because I don’t like your day doesn’t mean I hate myself.

I am surrounded by people who love me, help me, support me, tell me off if I need it, wind me up, tease me, laugh with me, cry with me, knit with me, sail with me, and do all sorts of things for me and with me.  They accept me too.  I thank them often for what they do for me and I appreciate it and they thank and appreciate me when I do stuff for them.

But I don’t thank them for accepting me. Because I shouldn’t have to. I am a part of their lives and they are a part of my life because it’s what we want.

If people I have to deal with in a professional capacity (either theirs or mine through my unpaid voluntary work) have a problem with my disability then I would hope our interactions would drip into their brains and slowly bring change and I would focus on that. If people I don’t have to deal with have a similar problem I would still hope the same thing but frankly I’d give them a chance then cut them out of my life. I’ve not got time to change lives, I’ve got a life to live.

Yes I know attitude to disabilty aren’t what they could be.  But in my life time alone  I’ve seen huge changes for the better (and maybe one or two for the worse). That’s continuing.  It’s just more effective if we live our lives and celebrate who we are and our contributions. One day isn’t going to change it.  In fact I worry it’ll make people think “well they wanted me to do it on 20th Jan and I did so they can’t expect me to do it everyday.”

People might remember the old TV ads that used to be on in December time “A dog’s for life, not just for Christmas.”  Well, my disability is for life not just one day and I’d prefer people remember that.

(I’d also prefer people to remember that a post of twitter is just a tweet. It’s not an attack on their views, just a differing opinion and there is absolutely no need for shit like the trolling I had yesterday. But I think that’s probably wishful thinking.)

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