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.)

(first time comment moderation is enabled on my blog – if you haven’t commented before your comment will be held. This is standard to prevent spam).

Spotted on the Internet

A few links to articles and blogs that have caught my eye or otherwise made me think lately:

Kate Granger is a doctor working in elderly medicine in the NHS. She’s also a patient with terminal cancer. So she has a unique dual perspective. Her tweets @grangerkate were what first brought her to my attention, especially when she tweeted repeatedly during a recent hospital stay about the number of hospital staff who failed to introduce themselves. That’s led to a bit of a campaign and her blog about it is well worth reading Hello my name is…. There is also a storify page with all the relevant tweets gathered together with additional comments from Kate Granger.

Something very different is this post from A Thrifty Mrs – are we the now generation? I’ve not commented in the discussion because I’ve been changing my mind a lot but it is something I keep coming back too. I think probably we are the now generation and in someways that could be causing problems (and may even cause many more in the future). But equally in someways it could turn out to be a good thing as long as the feasibility of “now” rather than later is considered. I’m not always good at that!

A couple of weeks ago I came across a new to me blog called Fat Girl, Phd. Several of her posts have struck me as memorable and worth a reread or three. Lets Get Angry and Start Being Kind is one of them. Feminism and empowerment in what strikes me as a sensible and easy way – mostly focusing on ourselves.

Legacy

I can’t remember where but a few weeks ago I read something that I’ve been thinking about on and off ever since. It said that in the future our descendants won’t need to employ traditional genalogy techniques to learn about us. Because what they know about us will be from our facebook posts, tweets, and blogs.

I like that idea because it means that potentially (should it turn out to be true) it means those in the future will know a lot more about my past then I will tell them. And they’ll know more about me than I do my own ancestors.

I knew all of my grandparents and saw three of the four regularly until they died. It’s been years but I still miss them dearly. I have memories of time we spent together and of some stories from before I was born that they shared.

I never met any of my great grandparents and really I know very little about them. Sometimes I hear the stories and I think that I want to know more. Or I remember a time with Grandad or with Nanny (my mums parents who were divorced for most of my life and I have few memories of them together) or with Gran and Grandad (my Dads parents) and I suddenly wish I could ask them why was… Or what happened next?

That’s partly why I kinda like the idea of my Internet postings as my legacy. Because its my words and my experiences told my way. Future generations probably will know us in a whole new way than before. As a disabled person it’s probably extra relevant. I think we’re in a time of big upheaval and change in the disability movement and whilst its looking bad short term, in the long term it could go either way. I suspect with the Internet as an archive or legacy the saying “history is written by the victors” will cease to have quite as much meaning or power.

But it’s also making me think more about what I do post. The way I blog has been changing over the past year or so. My boundaries and what I feel comfortable sharing have altered a lot. In part that’s because I’ve changed but the changing dynamic of the Internet and online community has played a role too. I feel I post more about what I’m thinking than what I’m doing now. But at the same time whilst guarded some of it is more personal, more open. That was happening before I heard the legacy quote. It just gave me an understanding to my thinking I’d maybe been missing before and brought another aspect to it.

If my great great great granddaughter knew nothing about me but the contents of one tweet do I want it to be the fact my arm itches right now? So I am trying to perhaps think again before tweeting or facebooking or blogging and share what is really important to me first.

That doesn’t mean that all the silly and random stuff I post is going. Because sometimes I’m still gonna want to share that silly joke I heard or that I had pizza for tea.

Disability in the media

I’m paying a second visit over at Bea Magazine this month.  I wrote about the disability issues which were raised by the news that paralympian Oscar Pistorius has been arrested on suspicion of murdering his girlfriend Reeva Steenkamp.

You can read it here:

Disability and the Reeva Steenkamp Murder

The coverage of disability in the media has always been problematic but I’m really hoping this might be the beginning of it changing. I suspect that it’s more likely that it will change the way violence against women is covered by the media than disability.  Still I hope.

Last year I was asked to speak to the local paper about my sailing group having some new equipment after fundraising for over 6 years and raising half a million pounds for it.  It was on the phone and I did tell them I was a wheelchair user because it was relevant (the equipment will mostly help wheelchair users and means I can be more independent).  I didn’t tell them that I had CP.  But in the article it said “Ms Crees who has cerebral palsy and uses a wheelchair said…”  Because that’s what defines me in their eyes.

That and another experience a few years ago where something I said was taken slightly out of context to make it appear like a terrible disability thing in a news clip mean I would be very wary talking to the press again. Basically they obviously really wanted to me to answer yes to a question and wouldn’t stop asking me varients of it.  In the end I said along the lines of  yes it seems like that to you but…”  The final news clip had me just saying “yes it seems like that.”

And I’m just me.  A regular crippled girl who writes and likes to sail.  I’m not high profile at all.  The fact that Oscar Pistorius is high profile is a big part of the reason why there are so many issues relating to disability in the coverage of Reeva Steenkamp’s death but it’s not the only reason. Crimes are committed by disabled people every day.  People are murdered everyday, sometimes by those disabled criminals or by others.  That doesn’t always hit the news. This did and brought with it issues about disability magnified to a whole new level.

I didn’t think of this until after I wrote the piece for Bea but I suspect disability is why it’s getting so much coverage.  If a regular Olympian, say, Greg Rutherford (being only he was the first to come to my mind) was accused of the same crime it would be a big deal.  But I’m not sure it would be quite as big a deal with so many people shocked and talking about it as when it’s the so called “Disabled hero”

I’m not the only blogger who has been tackling these issues.  William Peace has also written about the problem of disability role models (in which he also covers Helen Keller) over on his blog Bad Cripple.

Accidentally Quiet

Yes, yes, anyone who knows me is probably reading this and going “quiet? You don’t do quiet Emma!” and they would be right.

When we went to the Paralympics our day pass tickets meant we could have gone in to goal ball. There weren’t any seats available though and I said to my friend that was probably a good thing because I thought I’d suck at watching goal ball. Because the audience is required to be quiet. And I’d really gotten into all the dancing, cheering, yelling, clapping, singing and screaming that had been involved in a watching a lot of the other sports involved, particularly sitting volleyball and wheelchair basketball.

So yes, there’s a reason why this blog is titled accidentally quiet. I’m referring to the fact that despite having many books reviews and other blogs to post I’ve been mostly silent online this week. My router broke and I’ve had no Internet at home. I can’t check my email on my phone for some reason either. I should be able to but it’s never worked and I can’t work out why.

Not having the net is strange. It’s frustrating in small ways like I keep meaning to look up a phone number on a website but forgetting when I get online (goes to do it now…) and I sent an important ish email last week that I’ve not had a response too. And it’s so ingrained my routine and perhaps even my psyche to be online all the time.

But I’ve spent a lot of time buried in a very long and very good book (11.22.63 by Stephen King) and I’ve done some writing, and got stupidly addicted to Fruit Ninja again. And twice I’ve been using the wifi in a coffee shop and ended up bumping into other CAB volunteers and having a long chat. Which is fun, particularly getting to know one of them a bit better. Part of me thinks I should have made better use of my enforced offline period and spent less time checking the sites I could get onto on my phone. But I know that’s ridiculous.

In a way I quite like it but mostly it does my head in. Particularly yesterday when I was tired, it was rainy, things went wrong and the details I needed to sort it were on my email. That ended up being a straw that broke the camels back especially when my Dad made a comment that usually would be ok and I burst into tears. When that happens its usually a sign that things aren’t great depression wise but this time I’m blaming the Internet.

I’d like to say that I hope to spend less time online from now on but I suspect I won’t when it comes down to it and I probably shouldn’t set unrealistic goals. I’ve been surprised by which sites I’ve missed and which I haven’t even thought about until I just now looked at my history. Perhaps I can use that to free up a little more time for more constructive tasks. Or at least to free up a little energy that’s being invested in being annoyed about Internet stuff that really doesn’t matter. I really haven’t missed that.

What I will say is I hope to be online properly soon and I feel like I have a lot to say then. In order to make that happen I’m off to PC World…

>The Month After Christmas

>

Sadly in my case most of this was true way before Christmas but because I needed a laugh…

The Month After Christmas

(Author Unknown)

Twas the month after Christmas, and all through the house  
Nothing would fit me, not even a blouse. 
The cookies I’d nibbled, the eggnog I’d taste 
At the holiday parties, had gone to my waist. 
When I got on the scales there arose such a number! 
When I walked to the store (less a walk than a lumber). 
I’d remember the marvelous meals I’d prepared; 
The gravies and sauces and beef nicely rared, 
The wine and the rum balls, the bread and the cheese 
And the way I’d never said, “No thank you, please.” 
As I dressed myself in my husband’s old shirt 
And prepared once again to do battle with dirt— 
I said to myself, as I only can 
“You can’t spend a winter disguised as a man!”

So–away with the last of the sour cream dip, 
Get rid of the fruit cake, every cracker and chip 
Every last bit of food that I like must be banished 
“Till all the additional ounces have vanished. 
I won’t have a cookie–not even a lick. 
I’ll want only to chew on a long celery stick. 
I won’t have hot biscuits, or corn bread, or pie, 
I’ll munch on a carrot and quietly cry. 
I’m hungry, I’m lonesome, and life is a bore— 
But isn’t that what January is for? 
Unable to giggle, no longer a riot. 
Happy New Year to all and to all a good diet!

>Disappointed :-P

>I saw several copies of The Secret on display in Waterstones earlier.  I still don’t want to read that book (or watch the film) but they were right next to a book I did want to look at.  So I figured I’d have a quick look at The Secret too. 

No free shiv.  I was very disappointed.  It would have been the only thing that would have made me consider buying it.

>Facebook, Distilled

>I have a real love hate relationship with Facebook.  I love the fact that it’s allowed me to reconnect (and in some cases meet up with) old friends who I had previously lose contact with.  And it does make it easier to keep in touch with certain friends via facebook too.

But I also hate the fact that every so often I read what other people are doing and it makes me sad… because it makes me see what they have in their lives and how they are doing things I would love to do like working and having kids and in relationships and I’m not.  It doesn’t always make me sad but it does at times.  My mum says they probably look at my profile and see how I live alone and volunteer and do creative writing and sail and all that and see things they wish they had in their lives.  She’s probably right, in fact I’m sure she is.  But it still isn’t easy.

The worst and most annoying thing about facebook however is all the invitations and crap that people send you with it.  I ignore the majority of it and I try not to send too much unless I think it’s personal to certain friends.  It’s marketing and it’s some what annoying because that’s all it is in the most part and people don’t always see that.

I just saw this comic linked to on Facebook:  Facebook, Distilled.

Love it.  Sums up completely what I think about all that stuff and is pretty funny too.

I don’t know if that’s an accessible image so just in case.  It’s a “facebook page” for adding an application.  The application is called “you’ve been marketed too.” and where it would usually say Friends name sent a whatever via such and such.  It says “Some Douche sent an intrusion via Marketing.”  And the spiel is about how they know the marketing is annoying but they don’t care.  There are loads of little details as well which just really add to it, get the point accross and are also pretty funny.

>Internet blahs

>I’m finding the Internet a very annoying and irritating place lately.  I’ve heard several stories lately of blogs I follow either being fakes themselves or being the victim of fakers – stealing their photos and passing them off as their own etc. No to mention all the blogs that are spammers and use some of my content… so many of my incoming links are that it’s unreal.

So as you might have noticed I have removed all of my photos from this blog and from my facebook page.  Most will be watermarked and will then return however I don’t have the time, patience or inclination to do all of the 100+ photos that were on here nor the nearly 150+ that were on facebook (some of which but no where near all were both on here and on facebook).  What you won’t have noticed because I’ve only just done it is that I’ve added a copyright notice to my RSS feed.

Can I ask how many people follow my blog through my RSS feed?  Because something I’ve been thinking of is disabling it.  RSS is apparently one of the biggest ways fakers and spammers and blog scrapers get their content.  But I’m still thinking about that at the moment.

The other thing that gets to me at the moment is all the catty, bitchiness that goes on in others comments and some of the clicqueness I see.  But the answer to that is simple, stop reading.  So, for a few days, just for those blogs, I have.

>Blogosphere, a Sucky Day, Postcards and Screw Bronze

>I’ve been reading a few posts lately on other blogs where they share links to other blogs they love. And for the last few days I’ve been meaning to mention this so here goes.

If you’ve not been over to Screw Bronze! and read the writings of Elizabeth McClung, you really really should.

I had a really sucky day on Wednesday. But I also had a lovely surprise the knowledge of which (it was waiting for me at home) helped me through the suck and also most importantly made my day. It came as I was leaving the house but I didn’t get a chance to look at it properly till I was home later in the day.

A postcard from Elizabeth complete with stickers and a crane stamped on it. Yay for fun post and a cute postcard covered in fun stuff and chatty stuff. I love the blogosphere, I really do. I meet some great people.

And on the postcard she said she saw the photos of me doing the 5K and that I looked great. Elizabeth, who does a 10K after days of being really ill, goes on oxygen in the middle of the race and still manages to finish it in less than an hour, thinks I looked great doing a 5K really slowly and with much difficulty? Yup really not sure here whats more impressive.

And when I e-mailed her to say thank you for the card, she replied (part of it at least):

Each race is hard but if I space them out then it sounds pretty impressive (to me at least) to say I have done X race and Y race this year. So I am like an athlete or something, or out there doing it at least. And you are too.

Yup, Screw Bronze rocks. And so does it’s blogger.