Thursday, November 28, 2013

It has been bought to my attention (by which I mean bullishly stated/SHOUTED) that a couple of people out of the thousands of you, are not happy with me using any words derived from the word spastic. I am only ever referring to myself, and I am aware it can be used as an insult. I am not seeking to insult myself, or anyone, rather I am seeking to claim that word back, and diminish it.

So, to discuss the provenance of the word. It is a medical term, used to describe muscular weakness and spasms. Consultants have used it when describing what Multiple Sclerosis has done to me. In particular to my legs. It's VERY upsetting to hear that word used to medically describe yourself. One things for sure, I don't start SHOUTING at the doctor for being DISGUSTING for using that term to describe what's happening to me, and why. It's VERY upsetting to live with it. So I use it to refer to myself, in a bid to reduce the horror. I know it may sound clunky, rude and uncomfortable to other people. Living with it is definitely clunky and uncomfortable. And it has certainly rudely interrupted my life. If you don't like it, don't read my blog.

I will not be censored/controlled/bullied publicly, by someone who could choose to contact me privately to discuss her concerns and opinions. But no, she, for whatever reason, prefers to publicly SHOUT at me and talk AT me. Never once a discussion.  I know that the blog is global, and that I'm inviting responses just by putting my thoughts and words out there.

But not from this person, and not in this way.

This person writes about the fantasy of rape and necrophilia. When she invited me to read her blog, I chose not to, and privately told her of my decision. I would not tell her, or anyone, what to write, or what not to write, and would appreciate the same in return. If you don't like my writing, or what I write about, don't read it.

For mobile viewers click HERE. I love Adam Hills, so I recommend you watch it all, but if you can't, whizz forward to 10.50.

I am not on the outside, looking in and poking fun at something I have no experience of. I am on the inside, living and experiencing this every minute, of every day. I wish I wasn't. But I am. So if I say spaztastic, and if that makes me laugh at myself and the situation I find myself in, and what I have to deal with, so be it. 

Monday, November 25, 2013

AAaaaarrrrggghhhhhh!!! But...I smell something brewing....

This weekend was interesting. Friday night saw me at a friends having dinner and conversation. The dinner, the conversation and the company left me feeling full and satisfied. A good night.

On Sunday there was a family meet up, to celebrate a birthday. Several attempts had been made to find somewhere with suitable wheelchair access and a disabled toilet. The two prerequisites to allow me to join in and have a stress free easy time. The place that was finally settled on declared themselves accessible and with a disabled loo. Bingo! Or so I thought.......

On arrival, and whilst still in the car park, my only thought was, 'Oh fuck.'

The disabled parking spaces were at the furthest end of the car park from the 'disabled access' and the pathway was blocked by those huge industrial skip type bins. So we had to park near to the 'disabled access' in a normal space which does not allow enough space for you to open your door wide, another 'need.'

So then to the top of the slope......the so-called disabled access. I felt like an olympic ski jumper, staring down a run so steep. If you weren't disabled at the top, chances are, you would be by the time you reached the bottom, in a scabby broken heap. Feeling invincible, and with my mind screaming that I needed to talk to the manager or manageress about their access, I thought 'Fuck it.' And let go of my wheels. I know I've never moved so fast, which is not so great when your hands are your breaks. As I neared the entrance, I was greeted by another bloody obstacle.

The door.

It was big, and looked heavy, and was found to be heavy, with a handle up high, it opened outwards, so towards you, not easy when I can't just step backwards, and I had to negotiate all this on an upwards slope with a bloody door mat on. Driven by 'gggggrrrrrr' alone, I got in, and was greeted by a sales assistant asking if I was ok. 'Errrr no. Can I see the person in charge please?'

The person I saw was helpful, and was grateful for my feedback, got those massive bins moved, and offered me a wine. Sounds good, but then......

My mum had booked a table in the bar. Our table had been moved into the restaurant. Down two steps. To compensate for this, a ramp had been placed over the steps. Small compensation though, as it was another steep slope with a lip at the top and the bottom, which I couldn't negotiate independently. Being in a wheelchair is bad enough, let alone when you can't do it independently. It really ups the spaztastic feeling.

Aah but what of the disabled toilet? The toilet was fine, but getting to it was not. Up that bloody ramp, which I had to ask for help with, through the bar, negotiating tables and people, through another doorway, that took my knuckles off, with another heavy door that I needed help with. To strip it down to it's basics, I had to ask for help to go to the loo. Like a child. And incurring injuries on the way. Brilliant.

To get to the car I had to go down a different, gentler slope. But oh, it had a kerb at the end. I know I can get down a kerb, but not everyone can. And why the fuck would you design it like that anyway? And me negotiating the kerb gave rise to worried looks on the faces of the onlookers, which was kind of priceless.

So this got me thinking on the journey home. People are not aware, not truly aware if they have had no experience of disability. And I mean first hand experience. This is what is needed. In schools. In workplaces. Restaurants. Shopping centres. Everywhere that able bodied people go.

Until able bodied people experience disability for themselves, it's all supposition about what is truly needed. Until the world is equal and inclusive, there stands to be winners and losers, the included and the excluded.

I do not want to live in that world. It's no good for anyone.

Going out is a bit like this.....but without the awesome skills.

For mobile/tablet readers click HERE for the link.

Saturday, November 16, 2013

Sometimes there is a lull in my posts. Sometimes this is because I'm busy. Sometimes this is because I'm finding it difficult to hit on a topic. Sometimes it's because I feel rough. Sometimes, like now, it's because of all three.

This time, whilst feeling rough, I spent my time with my new and oh-so-beautiful acquisition, a book called Letters of Note. A truly beautiful compilation of letters that will give rise to every emotion known. I am not ashamed to admit that one letter, 'Our Frank' had me weeping. I remember Frank. And I remember the horror of the Lockerbie bombing that alerted me to his presence.

The letter describing a mastectomy performed without anaesthetic.....can you imagine? Letters of all kinds furtively reside within the hard covers, waiting to be read, waiting to be imagined, waiting to be felt.

This week was a week that introduced me to reads that made me feel, really feel. One such read was in  The New Yorker, and was a piece by Ariel Levy called Thanksgiving In Mongolia. I've put a link so you can read it for yourself.

As long as I'm feeling empathy, and keep searching to share the experiences of others, I know I'm still alive. And for that I'm grateful.

Friday, November 1, 2013

I should be so lucky...

Last night I went to the supermarket with the good man to do the week's shopping. I usually do the shopping online, but I'd left it, and the cupboards were bare. So, to the shop we went. And all went well.....until a lady approached and told me how lucky I was. I'm in a wheelchair, do you call that lucky? Turned out she was referring to the fact that I had a husband and that he was doing the shopping, with me, a poor disabled. Inside my head I was screaming. She told me how lucky I was to have a good husband. I told her he was lucky to have me. To be honest, we were both a bit taken aback by her. Y'know, the kind of taken aback where you form the words after the event.

This incident raised several questions.....

1, Why did she approach offering opinion? For all she knew, I was in the wheelchair because my husband had caused me to be there, accidentally or violently.

2, Why did she single out my husband as good? Because he was shopping? For food that he was going to eat? For being with me even though I was in a wheelchair?

3, Why did she single me out as lucky?

4, Would she have approached us individually?

5, She approached us, so she must have felt it was ok to do so. And she must have also felt it was ok to offer her opinions, whilst not knowing anything about us, or our situation.

On reflection, this has made me laugh, but it has also made me angry. I may be wrong here, but it did feel as though she was saying that I was lucky to be with someone, despite my disability, and that my husband was good for being with me, despite my disability. 

And just like she should not offer opinion to two people she doesn't know, I cannot offer opinion on the reasons behind her behaviour or actions. But I can say how it made me feel. Quite frankly, it was her shit, and she can keep it.