Off grid & Free 

Like any Twenty (pushing thirty, but keep that quiet, yeah) woman I have grown up with a social media influenced life.. 

It started with MSN messenger, and my notoriously bad, failing attempts at flirting with that boy I liked for an hour on a weeknight and most Saturday mornings, after  SM:tv Live of course.

Little did I know that later in my teenage life, society would have me hooked up to a social network whenever I wanted, for as long as I wanted. My beloved Nokia 3310 was replaced with a battery slurping ‘smart’ phone as we were, and still are, incouraged to try different and novel ways to communicate. 

As a disabled person the social worlds I can now access through my devices that fit on my knee are great, Facebook means I can keep up with friends in real life and communicate, share in thier joy and allow others to share in mine as I go through life with a disability and show others that my difficulties do not mean disaster, not by a long shot.

While Twitter has allowed me to make friends far and wide with people who would otherwise be strangers, I share experiences good and bad, complain to companies and follow some hilarious folk that are always full of advice. 

I join these Socail outlets for fun because I don’t take myself seriously and because when you boil it down, I am very social. 

I never want to start arguments or wars, I ignore trolls and I will never ram political bollocks or dramas down your throat. I just want to have a laugh, talk about food, and make you realise I am the human embodiment of Bridget Jones. 

Britain recently voted to leave my the European Union, something which had been debated for months and just like any political decision it caused Socail Media to turn like Me on a Sunday when I discover there’s no Bacon… Slightly tense and prickly. 

I believed that it would all blow over, and that both Facebook and Twitter would return to the place I once knew, somewhere where I can have light hearted conversation about things like, the lack of full sized Twister Ice Lollies or the reason why Brian May always wears trainers. It didn’t.

In fact it got worse as I watched in horror as friends I know and love attacked one another using vile language of hate and negativity. 

I posted a status calling for people to remember that the outcome of this vote was out of our hands and what we have to focus on was being kind, tolerant a decent humans. This fell on deaf ears, I realised that I don’t cope well in negative environments and I decided to walk away from Socail Media for a while.

If it wasn’t for the fact I control 4 Facebook pages for various projects and two Twitter accounts I would have deleted everything and gone permanent off grid. 

I didn’t though and after two weeks I was back on Twitter nervously tweeting my messages of kindness. 

 Have yet to return to Facebook and if I’m honest I’m not really missing it, whilst the lure of keeping upto date with friends was once something I revelled in, I’ve also began to realise that there was always a feeling I wasn’t doing enough with my life.

If often see posts about my friends who were out, while I was home or notifications that someone was engaged, married or pregnant as I am aril struggling to find my first kiss.. 

I’d begin to feel sad, low and even occasionally a little bit jealous and it’s only now, without it I realise all that stuff, those emotions, where brought on by Socail Media.  

I know my insecurities, I know that even though my life isn’t perfect or fair I have a lot to be thankful for and I shouldn’t allow myself to get low because my mates are having a better life than me. 

Friends, if they value you will stay intouch and life? Well, it figures it’s self out. 

Silent Understanding

I hate the word inspirational, but yesterday I heard a story about a ten year old little boy that made me, very nearly use the term. 

Ten year old Jonathan was born with a severe disability, unable to speak, feed himself, or even hold his own head up, many people thought that he was incapable of processing the most basic information. 

Educational establishments bad taliored his learning experience in accordance with this and instead of focusing on the basic principles that able bodied children learn, Jonathan was given a sensory learning experience, based on stimulating the senses of touch, sound and vision, something that is not uncommon for young people with severe difficulties. 
Only a few days ago, Johnathan’s Mum began to realise that her Son was trying to communicate with his eyes despite his locked in syndrome and that not only was he trying to communicate but he’d spent the last ten years of his short life Picking up the way of the world, watching telly, hearing conversation these basic things had given him an understanding of the world that had written him off. 

I went to a special school for children with disabilities and I spent a lot of my time as a child with other disabled youngesters, some with far bigger problems than mine. 

Disability in its various forms, for me has never frightened me, in fact I take pride in the fact I can speak fluent Sign Language and can easily understand someone with speech difficulties. It took years to hone the skill. 
I’ve never shyed away from talking to those who can’t talk back and can distinctly remember comforting an older boy, with similar difficulties to ten year old Jonathan. 

Adam, was a boy who’s body just didn’t work, he sat in a wheelchair, his often tense and clearly in some level of discomfort that never went away, and at the end of every lunchtime Staff would lie Adam out on the floor with music playing and his friends round him to make him a little more comfortable. 
I was seven years old and it was one rainy wet play afternoon, Adam, as usual was on the floor, for some reason Staff had got me out of my wheelchair too, allowing me to crawl on the floor. Adam  was making a funny noise, half way between a scream and a ‘hey, I’m here’ noise. It got louder and louder when I realised he hadn’t got anybody to play with..

I crawled over to him placed both my hands on his forehead and began to talk to him quietly, singing songs and asking questions that didn’t need a reply. After this I would often go and sit for a while with Adam on a lunchtime just talking and never really knowing if he could understand any of it.

Years later after Adam passed away his Mother came to work for School, I used to tell her what I did for Adam to keep him company of a dinner hour and she would always simply say ‘Thank you, I know he would of enjoyed that’.

As I got older, I used to catch a bus to school that would pick pupils up who lived in the same area that all went to the same school 

There was a boy, a lot younger than me who like Adam couldn’t communicate, but never the less I’d talk to him all the way to school. I shared that bus with this little boy and over the years, he learned when the driver had stopped at my house and the sound of my voice. He became more and more responsive to my sing songy ‘Good Morning’ and even though he couldn’t reply I’d always get the biggest smile, that was enough to brighten the greyiest of Mondays. 

His pick up was always before mine and his Mum would tell the driver what he’d been upto on the weekends and the driver would make a point of telling me so I could say

‘I hear you went for a walk with Grandma on Sunday!’

 eyes would widen, his smile would appear and he’d make this excitable breathing that would always make me happy. 

Sadly, he to past away shortly after I left school, his Mum always said that her little boy liked me and when she mentioned me he’d smile. 

I’m not telling you this because I want to show off or get praise, talking to people has never been a hardship but hearing Jonathan’s story, hearing him finally tell people be CAN understand was a joy and reminded me that just because someone can’t speak doesn’t mean they can’t hear you. 
Disabled people understand more than you know and are clever enough to get thier voices heard despite thier difficulties. It’s amazing. 

I am in absolute ore of people who cannot communicate and yet still find a way to key there voices be heard, the patience is incredible, I get annoyed when my spazzy hands  can’t open a bag of crisps 

If you’d like to read Jonathan’s story, you can here

Disability does not mean death 

As I write this blog, There’s a protest happening at s movie premier in London. 

I adore the movies, TV and entertaining people, but it seems the media doesn’t really like me. Repeatedly making people with Disabilities the villains in bond films, the pathetic protagonist or with wild accusations that my life isn’t fulfilled as that of my able bodied counterparts

Which of course is bollocks. I am of course talking about Yhd new Hollywood movie ‘You Before Me’, which is causing quite a stir.

As far as I can gather, from talking to my friends who are disabled this film focuses on a paraplegic man and a romance between his carer, as with everything these movies get heavy, and he euthanizes himself because he can’t ‘give himself to her as a full man’ (whatever the hell that means) he figures that his death will give his lover freedom from the burden of him and give her financial security. 

I would have read more into this, but it pissed me off so much that I couldn’t bring myself to do it. 

So I’ll take to this blog and tell you a few things about what my disability really means in the real world. 

Firstly, my disability does not make me want to end it all, yeah there is often a level of frustration but I have never wanted to end it because of those frustration. I know that despite my barriers I have lots to give to the world 

I have a rich life, friends who love me and a devoted family. I laugh, cry and have emotions just like a real girl. 

I understand more than you know and I’m stronger than most, my disability hasn’t closed many doors to opportunities but more opened doors – the wheels make me memorable to many and I relish on this fact! 

Does my Disability make me less of a human?

I will never see myself as a burden.

I am capable of giving myself to a lover as a full woman (what does that even mean?!) 

Disability does not and should not mean death. 

Don’t always belive what you see it’s 2016 hoe long do we have to go before those with disabilities aren’t seen as inspiration porn or sources of pity. 

Go see hr movie if you must. If you have any questions. I’ll tell ya the truth 

Don’t let limitations be your limit

I’ve never been one who can take being told ‘no’ very easily. Doing so will probably result in and endless ‘but why though’ arguement that will eventually lead to me showing you exactly what I’m capable of. 

I’m a closet fan of those motivational quotes and would probably share my wisdom if it wasn’t, luckily for you, widely seen as socail suicide. 

I’m not a big Fan of the ‘inspiration porn’ thing either,  I hate to be the one who is held up in a pedestal, as someone who’s better than you because I have seen more hardship than you, the truth is, everyone goes through shit it’s how you deal with things when the skies blacken and the shower of arrows descend.

You can either give up, give in or give it you’ve got. 

I was watching Ellen De Generes the other day and saw one of the current contestants of Dancing With The Stars, Nyle DiMarco, Nyle was the won of America’s Next Top Model a few years back. 

He is now the first ever contestant on Dancing with The Stars who happens to be deaf and I mean, completely deaf, he can only hear vibrations if the music is loud enough, and in the interview with Ellen he said, he can’t feel or hear anything, when dancing on TV, so he uses a series of taps and scratches from his dance partner to keep time with the track. 

As I listened to him speak through an interpreter, I Was struck at how positive he is. 

He sat talking about dancing, not making excuses, or looking for pity he was just sharing his experience as a dancer. 

If you haven’t seen him, it is astonishing, and proves you should never ever limit your possibilities.

He’s clearly never given up and proves I shouldn’t either. As someone much wiser than me once said

There is no greater pleasure in life than doing something others say you cannot do

You can watch Nyle’s incredible dancing, and interview with Ellen, here

Daydreaming 

I’ve always been a wheelchair user, because my legs have never ever worked and never will. 

Life is pretty great all in all, I’m making the most of my life and embraced most of the difficulty I’ve faced. I’ve worked hard to become more than just my wheelchair. 

Sometimes, when my mind wonders I get lost in the idea of being an abled bodied person, the notion of it at first seems like an easy life, and then the idea just becomes confusing giving me a headache in the same way I feel confused when I think about how a fax machine works. 

Thinking about an able bodied me, would mean that it wouldn’t just be a pair of decent legs, but everything would be different but I often wonder if I’d have the same personality, the same friends or even the same lifestyle. 

When I started college I was interested photography, the only reason I didn’t take the course was because the darkroom was up a flight of stairs – I opted for Media Studies and, the rest as they say is history. Later enjoying a career in national television, for a while at least.

Who’s to say I wouldn’t have become a photographer? Would I have travelled the world? Probably with a high chance, I’d probably be married by now with babies. 

The reversed lifestyle isn’t the thing that upsets me so much, all though it would be nice to find a Superman, I’m not bothered that I haven’t travelled as much as I probably would have. 

The reality of this daydream is of course, pointless, it’s full of if, buts and maybes, and the thought of what could have been always brings me back to the reality and all I have to be greatful for. 

My disability has shaped who I am, given me the friends I love  and a family unit so loving and strong we can conquer everything, it’s given me a drive and determination to achieve, something that o don’t believe would exist if I was able bodied. I’m sure I’d be a far more complacent person if my legs worked, rather than the passionate person I am. 

Would I have the empathy for others, I know that despite my difficultly I am extremely lucky to still to just have mobility problems  in the main. I’m still very much an independent person as much as I can. 

I pride myself on empathy and kindness or to at least try to be kind, I often wonder if the able bodied me would be selfish and actually quite horrible. 

We will never actually know any of this, but I’d like to spend a few hours in a room with able bodied me and ask her a few questions. 

What’s it like to walk? Am I more successful? Have I got a husband, a family? – it fascinates me.. The curiosity sometimes keeps me awake

All that said. I’m quite proud of me, and it’s often better the devil you know than the one you don’t! 

Am I an Inspiration?

  

Everyone who reads this blog, will know by know what kind of girl I am.  I tell things like it is, I’m not afraid of honesty and despite my sudonym of a wonderful woman I’m actually pretty normal. Sorry to disappoint you. 

I hate being called a brave person, I’m not. I cry lots usually when I’m in pain, and if you’ve ever seen me in the cinema, you will know I’m not brave at all. I can’t watch Jurrasic Park without feeling sick. 

And if people don’t usually call me brave I get labelled an inspiration, because some people think it’s a marvel that despite my disability, I have a smile on my face and a annoyingly positive outlook on life. 

Believe it or not, I don’t want to be your inspiration and labelling me as such us actually more offensive than you realise. 

There’s often never any reason for you calling me an inspiration, it always seems like a token gesture, like you’re scrabbling around to think of things to say, so you stick it on the end of a conversation to make yourself feel better and it leaves me feeling embarrassed because I’ve always wondered why people call me inspirational. What is the legitimate reason. 

Instead of the sympathetic head tilt at the wide eyes as you label Mr inspiring 

Could we not try validating why I’m such a eye opening force of nature 

So instead of: 

Ahhh Bless you, you are so brave! What an inspiration!!

Could we not try for example.  

You are a very inspiring person because you have made me think about disability in a different way. 

Re-phrasing the point, isn’t meant to boost egos, but it shows the Me that you’ve listened, and you don’t pity me and your not just calling me an inspiration to make yourself feel better. 

I’m still very uncomfortable with the term disabled, I don’t wake up in the morning with an aim of inspiring anybody. 

I just want to get on with life, there is so much more to me than my barriers, I’m someone’s Sister, someone’s friend, someone’s daughter and looking to be someone’s lover.. Just like you, I have plans, dreams and hopes just like you. 

Whats the difference between you and I? When was the last time you were called inspirational just for living? 

I’m curious to know why I’m an inspiration.. I’d accept it more if I’d had reason for the compliment.

Cloudy with a chance of pain 

I’m lying in bed writing this post, it’s been a difficult few weeks managing my pain. 

As a wheelchair user, I am always in some level of pain or discomfort, none of us know exactly what causes it, but my guess is it’s something to do with being sat still for long periods in the same position. 

I have been very lucky in my life to have the kind of disability that doesn’t require too much medication, the stuff I do take is to make me feel more comfortable rather than a necessity to keep me alive. Never the less it’s not the most joyful of experiences.

I don’t like to witter on and complain about aches, nobody wants to be friends with a moaner and besides I hate having people pity me, but I became aware that my daily gripes behind close doors where more than just a morning grumble instead, they where making me miserable and sad 

That will never do. So I recently visited the Doctor.  

I’m so lucky to have s great doctor who is sympathetic to my needs, we can discuss things and he’s very happy for my suggestions as to what could work. 

He’s also giving me a full check up, as I wheeled into the surgery and he enquirers as to my ailments I simply said  ‘I feel like I’m falling apart’.

After a few questions we came to the conclusion that the pain is worse at night as my body relaxes from an upright position as it, dies spazams occur leaving me in pain and not being able to sleep. We sorted out some meds and I’m pleased to say so far so good, I took the new medication last night, and as a result had the best nights sleep in months, and my pain has lowered. Early days yet but it looks positive. 

I’ve also signed up to give my body to medical science for 6 months today, keeping a check on pain diary and mood, as some science guys and girls believe that weather can alter people’s pain levels. 

I’ve decided to look after myself and my wellbeing far more this year. I’m far too young to feel like a 88 year old lady

There’s far too much being fabulous to do yet!