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).

On being a writer

I know you want to sing. See. I love to sing. Nothing makes me happier.I either wanted to be a singer or the head of the Ice Capades. Hey. Do you know who the Ice Capades are? Don’t roll your eyes. They were very cool.

I went to my mother who gave me this book…called Letters To A Young Poet. Rainer Maria Rilke.

He’s a fabulous writer. A fellow used to write to him and say: “I want to be a writer. Please read my stuff.” And Rilke says to this guy: “Don’t ask me about being a writer. lf when you wake up in the morning you can think of nothing but writing…then you’re a writer.”

I’m gonna saythe same thing to you. If you wake up in the mornin’ and you can’t think of anything
but singin’ first…then you’re supposed to be a singer girl.

(from Sister Act 2: Back in the Habit)

Sometimes people ask me about writing. Advice on getting started as a blogger, or can I tell them about opportunities that are out there.

If I’m completely honest I’m probably not the best person to ask.

I love to write. Love love love it. But I don’t do it as often as I’d like to. Or even as often as I should. I’m the Queen of Procrastination.

I’ve been blogging and writing for a long time. Hell, I started doing it before blogging even existed. When I first started sharing my life online it was November 2000, they were called online diaries and everyone looked at you like you were really weird if you told them you wrote a diary and shared it for anyone to read (I’ll admit it: I was an avid DiaryLand girl. And sometimes I still miss that oh so basic but so wonderful site.)

That’s 13 years. The idea of so many years of my life being online blows my mind. If my blog was a person it would be a stroppy girl kicking and screaming and complaining that it’s not fair. And no one understands it. And if only it could be noticed and allowed to do it’s own thing it would be brilliant. A star even.

As much as the teenage metaphor started off as just a bit of fun I do think its also it’s a valid one for writing.

It’s harder then it seems. People who don’t write think it’s an easy thing. People who are just starting out don’t always understand the work involved. And there will always be times when I email a site with an idea and they turn me down, or I read an article and think “I could have done better” if only they’d let me try.

I can give advice on writing and blogging. But I’m not sure I should.

I’d probably just say its hard but it can be really worth it and you can get a lot out of it. Blogging is a great way to start in my opinion.

I could tell you about writing opportunities. If I googled them first. And I’m kinda selfish.

I put the work in. I found what was out there and made it happen. The two main other sites I write for are invitation only. I worked hard to get my slots. It makes me angry when people just expect me to get them slots on invitation only sites or let them guest post on my blog and then get annoyed with me when I say no (note for people thinking about guest blogging: do your research. I do not accept guest posts on my blog and even if I did most of what’s sent to me is a poor match. It seems they’ve just gone “disability blog” and not read any of my content).

I realise my saying no annoys you. I’ll say it again. Writing is hard work. Your expectation makes me feel you’re belittling my achievements. Your expectation pisses me off.

I could recommend articles and writers to other sites. But there’s no point in my doing so if I don’t think it’s right. My reputation is important to me and recommending or sharing the wrong stuff for the wrong site (or on my blog) could put that at risk.

I want to be helpful and support other writers. But I can’t do it for you. And I want to be a writer more than that.

The only way to be a writer is just to write.

A word of advice

For those who don’t know me.

Don’t try offering me unsolicited advice or helpful suggestions about my wheelchair and then go off on me when I tell you’re wrong and calmly explain the reasons why I do what I do and/or can’t do anything else.

Telling me where you saw me cross the road is dangerous is one thing. Repeatedly screeching at me that I’m going to get myself killed when I tell you its the only place I can is upsetting. And talking to me like I’m stupid and telling me that I do have a choice and could cross the road elsewhere is another that shouldn’t happen. Suggesting that you know I can cross elsewhere because you’ve done it with a buggy when I tell you why i can’t and the guy selling drinks backs me up on it begins to make you look like an idiot. And it ruined my evening by hanging over it.

There are good ways of giving me unsolicited advice. Both of these happened to me.

Tell me that you spotted a possible loose bit on my powerchair as you queue behind me in a shop. Back it up with the fact that you work as a wheelchair technician, that its nothing to worry about but worth getting tightened because its very expensive to replace should it fall off. Bonus points if you tell me how to do it.

Or

Sit opposite me on the train. Tell me you don’t mean to interrupt or worry me but you’ve noticed one of my tires really needs air. Listen when I thank you but tell you the tires are solid (but I agree it does look like its flat). Comment that my chair looks like a good bit of kit. Optional: proper English small talk for a few minutes about isn’t it cold and am I travelling far before I go back to my book and you return to your paper.

Writing this has made me remember this funny incident from 2007

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.

Wheelchair Etiquette

Every so often I see articles doing the rounds online about dos and don’ts for dealing with us wheelchair users.  I don’t agree with a lot of things those include.  I was thinking about writing my own version but basically it comes down to

Be aware of the persons preferrence – a lot of these articles say you should get down on wheelchair height if at all possible when talking to a wheelie.  I prefer that people remain standing – or sitting whatever they were doing.  I’m not a fan of the crouched down beside me making a special effort thing.  I’m not just saying that because of the seat riser in my powerchair I’ve always thought that.

And don’t touch my damn chair.

Don’t lean on it.

Don’t move it when I’m not in it unless I ask you too

Don’t sit in it when I’m not in it.

Don’t grab my handles and take over pushing

Don’t grab my handles and stop me because you want to talk to me (which is what someone did tonight and is why I’m finally writing this post)

Realise that there are always exceptions to these rules but I’m not always going to tell you in advance what they are.  I don’t always know what they are! One such example is in this entry and still makes me giggle to remember four years later.

I’m wondering if this is a topic I need to come back to at a later date and in more detail – what do people think?

>Grumpy Gripping Girl

>Things that have annoyed me today:

  • Being messed around
  • Cold Callers
  • Bad English.
  • Lack of Professionalism
  • People not taking access into account
  • being told to be flexible.
  • A nose bleed
  • Burning my finger
  • Bad justification
  • Arrangements being made about me without my being consulted
Good Things about today:
  • No Chocolate
  • I sat outside reading
  • Getting a free book to review from WHSmith.co.uk via Twitter.  No idea what, just hope it’s not the same as the one I got from Waterstones!

>Ugh, annoyed

>In the past two days I have not met any of my three daily goals. Ugh.

The goals are
daily meds
10 minutes of exercise
2L of water
And in fact, I have had nothing to drink today but coke and a tiny amount of bitter lemon first thing.
I’m gonna go have a glass of water and my meds in a min.
Basically some of you will know that a couple of somethings I can’t blog about happened and got me very down. And then I get annoyed with myself for still being upset because the other people involved will have moved on and really it’s not my problem. And it’s just generally a vicious circle.
Plus I’m due my period and I get vicious, vicious serious PMS which is totally what this is. It’s actually my worst depression symptom. Knowing this for what it is and that it should be better tomorrow or Saturday does help. But it also doesn’t.
I’ve been in quite a good routine whereby I drink water as soon as I get up and right before bed (as well as at other times in the day) and my meds are by the sink so I grab them at bedtime. But yesterday I ran late and didn’t drink anything before I left the house. Then I found a bottle of bitter lemon I’d forgotten about and that was that.
And so I completely forgot about my meds until I was ready for bed, half asleep and just wearing my knickers. And my kitchen has no blinds and I know this is pathetic and ridiculous but putting clothes on (it looks out onto a public footpath) was too much effort.
My baclofen prescription is being changed to tablets soon and when that happens I’m going to put a blister pack by the sink and one on my desk so I don’t have that excuse any more. Maybe in the bathroom as well. The reminder is going back on my phone too.
Today was just a case of it had gone wrong already so why not just let it keep going.
Exercise is the one I’m struggling with the most out of all three, meds and water were ones I was finding were getting much easier.
Tomorrow however is a brand new day and I am going to meet all of those goals.
I’m also going to clear off my desk, do several loads of washing (I need clean clothes, towels, tea towels, bedding etc desperately) and read a book.
Determined Emma is back.
And everyone who wants to bring me down whether deliberately or accidentally can go fuck themselves, basically.