Fit wheeled wonder woman 

It’s the beginning of October and we are a few months away from Christmas. I’m sick of being fat and  tomorrow is the eve of my diet.

Over the last few months my health, I feel has deteriorated. I am out of breath after short transfers, and my self confidence is at an all time low.

It’s very difficult for disabled people, like me to be active and burn calories. My limited mobility means that I can  struggle to move and effectively loose wait.I don’t want to be a superhuman paralympic hero and neither do I  want to succumb to enrolling with armchair athletes with an average age of 76.

The problem for me is a deadly mix, I love food, my Mum is the world’s most amazing cook. Friends joke that they are only still friends because my Mum makes the most delicious food. Cooking is one of the ways my mum expresses love and with that big heart comes big portions. 

Then there other fact that despite the media wanting you to believe that all disabled people are aiming to be Sporty McSportison. I sadly am not. The look on people’s faces when they discover this is a kin to fat shaming.

I’ve always had issues with my body confidence. It doesn’t matter how many times I’m told, I will never really believe that I’m pretty, alluring or desirable. If somebody pays me a compliment, I will just say nothing. It’s hard to live your body when it fails your agile mind every day.

I will do nothing more than respect my body, I admire it purely on the basis that it has survived scrutiny and doubt from all angles and stood firm when people say it’s useless. But loving it, that’s entirely different. Not only does it not work, it’s disgustingly blobula.

Skype why am I telling you this? I have been historically bad at healthy eating in the past, with no will power, I get deprived, grouchy and horrible. So, I’m trying a different tact and writing a blog about my health kick.

I want to loose two stone. I don’t know how much I weigh currently. It’s difficult to tell when you can’t stand on scales, but with the support of my Family and Friends I hope to get thier and i want to share the ride with you.

It won’t be easy, I probably will sulk but I think writing about it might help to keep me stay focused and more determined than ever to become healthy.

No ever disabled person is a paralympic hopeful… 

But if they can be healthy so can I

This. Girl. Can

And it’s Starting from now.

Curoiusity kills your confidence 

It’s very odd thing to be disabled, I had to learn at an early age to deal with people staring at me. when I was growing up, I’d sometimes ask my Mum why people were looking at me, because you’re beautiful, She’d say, I knew that wasn’t the case. I knew deep down people looked because I’m different, many people with hidden disabilities tell of how misunderstood they are,  I often hear of people’s who disability is not as noticeable as mine telling of how difficult it is to be understood by society, and I’m not for. One moment going to sit hear and tell you how much harder my life is to that of someone with a hidden barrier, because the reality is, if you are different these seems to be short hand to say we are public property.

Once your different and in my case, disabled we wave the right it seems to privacy, wether it be because the nessecity of personal care or an ill thought through question, driven by curiosity. I will awnser almost any question – peticularly if it’s a friend asking a guenuine question. I don’t mind and I often say I’m an open book and I’ve heard every stupid question in the book. 

The majority of the stupidest things I’ve ever been asked are meant with no malaice. It is often the fact that people feel nervous about duscussing my disability with me and people are embarrassed to be asking such questions.  In these circumstances I often find my self using humour to form a human connection with someone, by doing this it means we can both get past the elephant in the room. 

You can tell the difference between someone who is curious, and someone who is frankly a cunt. 

I have never really experienced major bouts of Disablism, thankfully I’ve never been phsically abused because of my condition (touch wood..) but I have had experiences of verbal abuse from complete strangers. People who think nothing of telling me God has forgiven my sins, and that despite everything, he had forgiven me, and he is waiting for me.

Or those who will openly tell me I should have been killed at birth because I’m useless. The most reason on that angered me to the point of tears, was a man, a very fit man infact who at first seemed nice, suddenly turned when he asked me exactly how I became disabled, when I said I was born like it, he, with out missing a beat, asked if I had sued, when I tried to move on, without responding to his very prying question he pushed for a awnser, I eventually said no… And he told me I was dumb bitch who deserved every hardship I face. Nice guy.

Then there’s the people who think there doing me a favour, coming invading my personal space cuddling me, let me tell you, it’s never the handsome fellas that do that, usually I get lumbered with smelly alcholic tramps trying to smooch me.. These overfamiliar types will also think nothing of push my chair without telling me who the hell they are, or where they’re taking me, often pulling a wheelie and shouting something moronic like, get out of that cair and dance with me.

These are of course, not very serious hate crimes and all barr one, of the experiences I’ve had have has ever made me feel like I need police. The one occasion it did, and the police got involved nothing major happened a half an hour chat to tell him not to do it again, and that was it. If I’d have been of a different race though, I know it would have been a different story.

Some disabled people aren’t as vocal about thier experiences as me, and too be honest, it’s never a pleasant experience to talk about the horrible end of my condition, talking about the experiences of predujeces I’ve endured gives the people who are responsible undesevered time in my memory. Talking about them exposes a weakness in me, the fact that secretly each one of the ill thought through comments chips away at my self confidence. I hide it well because I don’t show weakness outside of my circle of friends and family. 

Being disabled waves the right anonymity. Wether it be people wanting to call you an inspiration, or someone wanting to tell you that even though they don’t know you, they hate you with a passion, someone will tell you, because they believe it’s there right.

Like an unwilling celebrity 

Happy Radio 

What’s your favourite piece of music you listen to when you feel sad, fed up or poorly? Queen? Quo? Or Alfie Boe? What ever it is, I am a great believer that music can make you feel better, I don’t know what it is but I think it should certainly be prescribed on the NHS.

I have been involved with my local Hospital Radio Station for around 5 years, I joined in a mad panic over the state of my life after university, in a bid to try and make it is a presenter, I joined up thinking it would be a ticket to stardom, playing good music and playing about on the radio was an ace way to start. If I stuck at it for a few months at least I’d be able to put the experience on my cv at least, there was a theory behind madness.  I never expected what followed.

What followed was infact a compleate love for entertaining people who are at the lowest ebb, and feeling very poorly indeed, being the people that are the ones who are interested in talking to the patients about something other than thier health and medications, but something that they are actually interested in, like music can make patients smile, and telling them to tune in to the show later that evening to hear the request can give them something to look forward to when the loved ones and visitors have gone home, leaving you with the grapes and a well thumbed copy of Bella.

I didn’t realise just how rewarding the whole thing will be, I never really realised just how many friends I’d make either, make no mistake Hospital Radio is not glamorous and it sure as hell doesn’t pay well, but having a team around you withal shared enthusiasm makes it all worth it. We aren’t just volunteers, we are a family.

Pheonix Hospital Radio is funded purely by donations, we couldn’t do what we do without the fundraising efforts of the team. We are currently looking to raise enough money for a new porta cabin and equipment that will service as a new studio, as the one we have is crumbling around our ears. 

Two of my radio buddies are currently in the mist of a 60 hour Marathon radio show from 10am on Friday 17th to 10pm on Sunday 19th July, which is something incredible. And I couldn’t be prouder of the work that Hospital Radio do this weekend.

I donate to may Just Giving Pages, and never usually ask much in return, well this is about to change. Right now. If you would like to listen to two men, slowly go insane all in the name of charity please visit and if you are feeling generous, please give what you can.. I know it maybe small to you, but to me it’s a very special station…

You never know when you might need us…

Thank you. 

I’m gonna make a change..

It can often be very difficult to muster positivity, peticularly in these modern times, you can get bogged down in issues that can seem massively world changing, clouding the view of the world we live in. That tricky time at work, the lack of romance in my life, or the apparent battles that others seem to put up obstructing my view of the goals I’m aiming for, can often be the things that tip me over into the abyss of gloom filled thoughts. Especially when my life is at times an already difficult path.

I always try and remain outwardly positive to others who don’t know me as well as some, from an early age my motto has always been ‘nobody wants to be friends with a miserable bitch’ and with my disability meaning that even in this day and age, some people are wary of becoming friends with Disabled People for sheer fear of offending us, it is important to me, that I try and maintain a constant smiling, friendly face and a attitude that makes people relaxed and comfortable in my company.

I am only human though, and sometimes even with the best intentions, I am unable to simply keep smiling and cheerful. I have realised though that the world is a much better place when people are happy, or at least that’s how it is for me. Giving me a purpose and being able to do things for other people is what makes me happier more than anything in this world. 

My limitations mean that I might not be great at helping you build that ikea flat pack wardrobe, I can’t drive to you at 3am to pick you up when you and your lover have had a row, Infact anything remotely practical, you can count me out, and it kills me that this is the case,but what I can do though is talk to you about the latest falling out with your beau, I can agree with you and make you feel better that, yes, they are a compleate wanker, and that you were too good for them anyway.

I can make you laugh. I’d do anything to hear you laugh. The sound of other people laughing and looking slightly happier than they were before they started telling me what was wrong is the thing I get addicted to, to put it simply. I like to make a difference in the world, even in a small, and in the grand scheme of things, insignificant way.

I love to see solidarity with others from others. It makes me smile when I see people, compleate strangers Infact come out in force to support one another in times of extreme difficulty. 

When the 7/7 bombings happened 10 years ago, at the time I didn’t really remember much about the attacks, what I remember is July 8th, when Londoners didn’t stay at home freighted to leave their homes instead they helped one another, carried on despite everything. I saw it happen again when the riots were spreading, and people we’re loosing faith in humanity, the day after we saw communities rally round in force to initiate the self styled clean up operations.

My point is this, no matter what happens in this world the majority of people who inhabit this planet are deep down inside, empathetic caring people, sometimes we get too bogged down in drudgery to see it sometimes, and I know from experience, as someone who relies on the help of others far more than most, most people aren’t as mean spirited as they have us believe. Not in my experience at least, yes the world can sometimes seem dire, and I despair at the news sometimes, we all know it’s not a perfect existence.

So this is why I have decided to try a little harder at being the one to spread a little bit of happiness to others, and also become very irritating too, no doubt , but, I know far more about this life being short than most people my age, I want to try helping out others where I can, in the best way I can, because Kindness is Magic, and in the grand scheme of things I am a very lucky human, things aren’t perfect,  but then again, who’s life is?

Be kind to each other, laugh everyday, and don’t let others rain on your parade. All horrid crap to spout. But all good rules to base an attitude on never the less. I do,not expect any gain from it but I believe in karma and whatever I’m able to do to positively effect others will surely give me positive effects to reap?

Do something amazing with me lets be the positive charge in an increasingly grumpy world.

I’m gonna make a change. 

Fighting to Vote.

As I write this, it is the eve of the 2015 General Election here in the UK. 

I can’t say I’m a fan of politics, I know I’m not alone, I hate watching the mainstream media working themselves up into a frenzy like an over excited lover hanging on until they just can’t bare it anymore, shouting things, in the heat of the moment, we all know they’ll regret in the morning.  Last night I heard a reporter say: 

“This election is turning into Game of Thrones.. Except without the naughty bits”

All gets a bit desperate and ridiculous,  but we knew that.

Most of you are probably glad that the build up is dying down, all we have to do tomorrow is turn up at the polls put that cross in a box and go about the rest of our lives for the next five years, we’ve even earned the right to moan about the state of the country. For me though voting is always a little bit stressful, it’s up there with going to my inaccessible dentist. 

The polling booths are claustrophobic the tabes are always too high,  making me feel like a toddler and frankly a general short arse, the booth walls are too narrow, making me very aware of my balance, or lack of it, and then of course there’s the pen, on a string that is far too short, when you consider the table is not designed for a disabled person, and because of this I can’t see the ballot paper, always very nearly, but never intentionally spoiling my vote.

When I voted for the first time, I can remember feeling very grown up and excited about being given the opportunity to vote. I went with my Mum and Dad and can remember asking exactly what I’d have to do. 

I queued up gave my name and address and was handed my ballot paper by a very grumpy man. Already my lust to vote was waining already..

All of the booths had a chair in them, and my first thought was ‘who the hell needs to contimplate who they need to vote for, for SO long they need a sit down?’…

Anyway, I rolled my chair under the table that I can only assume was built for a giant, paying disregard to the plastic chair lovingly placed underneath. As my feet barged the chair, it made the most horrific noise as it rumbled across the floor of the primay schools sports hall. 

This was accompanied by a chorus of of shushes and tuts. I turned around, and very britishly whispered an apology several times over.

I was, at this point in the booth, I realised that the pen was on a string, which, for reasons I’m still not all together clear on, Is on a string. But the table is too high. I tried to mark my paper but couldn’t quite reach. I needed someone to loosen the string on the pen. So I did what I always do when I am confused, and shouted a Parent.

Mum came to the rescue and stood behind me to see what the problem was, followed by the grumpy electoral supervisor who demanded to know what my mother was doing, trying to spoil my paper. She wasn’t. I promptly told the man I was finding it a very stressful experience.

I did manage to vote in the end and despite not being overly keen on politics, I do realise it’s every important. I’m no Russell Brand.

But voting when your disabled makes it feel like your left fighting to vote.

Having a disability is fighting a war with a water pistol

I have been a Four Wheeled Wonder Woman all my life. I always say that my disability has been a blessing in as far as I have never known what it’s like to walk. I haven’t got any memories of an able bodied life, I have lived my life very happily in the main and worked hard to counteract and barriers I have, smashing each one and proving everybody who has ever doubted my ability wholly wrong,  ‘cure’ me but to help my body fight any battle it needed to, everything was given to me in daily and weekly doses from physio and hydro therapy every week to the more painful standing frame therapy which happened every day for around four hours which was, at times, so painful I had been known to throw up.

As well as this, there were regular visits from the Doctors, who kept an eye on my general health, sometimes discovering further health issues and helping me to combat these. The Doctors would work with my GP, Parents and I to make sure I was as healthy an as comfortable as possible in my circumstance.

I’d be lying, if I told you I liked all of this intrusion of Doctors who saw me once a term, I certainly kicked up a stink when they’d infrequently suggested surgery I hated being made to do exercises, or forced sometimes with tears in my eyes into my standing frame, I had a handy knack of hiding in the toilets for as long as I could before my physio therapist would drag me out of and tell me it was ‘for my own good’. I’d put up a fight and it never ever worked.

My standing frame would even be collected by my Mum on the last day of term so that my standing could continue at home while I was off. My parents brought me an easel so I could draw whilst in cased in a frame to take my mind of it. I can still recall the growing intensity in my calves as time ticked by to the point where I could no longer bare it.

As I got older, my Physio session got less frequent and the exercises I was given where more about developing my independence skills and less about fighting my stiffening muscles, this they told me, was because there were younger people at School who needed the therapy more than me, as a result of this, my legs began to become more painful, not excruciatingly, but enough for me to notice, my posture worsened and a knock on effect of this was the discontinuation of my standing

At the age 14 and after years of pokes, prods, exercise and other interventions I was thrilled, no more pain.

I never realised what a good thing I had going.

Now in my 20’s I would do anything for that supported help and assistance. The decision to stop was not made by my Parents or I, nor was it Schools decision.  In government eyes however, once a disabled child becomes a disabled adult, the support that you’ve grown accustomed to stops. Completely.

Years later, and I now live in constant pain, which is often aggravated by movement. Something that I  never had to deal with as a ten year old know may not be cured but would most certainly be eased with the reintroduction and input of Physio, regular medicals and dare I say it, even the use of a standing frame would help.

Without this support, I have realized, I feel like I’m fighting a war with a water pistol,  I’m usually very positive about the difficulties I face, but there are days when I am so unbelievably hacked off with the pain, I’d do anything to take it away, the only thing that works is painkillers that render me useless by 5pm.

There is a campaign going on in Scotland to get the law changed so that disabilities are recognised as a lifelong condition, which will mean that other Four Wheeled heroes like me would be able to get the continued support we need to fight the daily war on disability without fear of sky rocketing cost.

I fully support this cause, and if it is a success, hopefully England will follow suit. Unfortunately my disability won’t ever be cured but why should that mean I have to live with a life of pain?

FILM REVIEW – The Theory of Everything

A Theory of Everything (2014)
Director: James Marsh
Running Time: 2hrs 3 mins. Certificate 12A

I’ve just been to see A Theory of Everything, the film about The life of Stephen and Jane Hawkins. I’ve never been one to get over emotional over movies, years of analysing them in film studies as a student, meant you can usual work out the ending of a film way before everyone else and that the director will manipulate your emotions by playing music, to evoke tears or a close up to make you focus on a specific issue.

Of course I know the well documented life of Stephen Hawkins, everybody does, and there had been up roar about the fact that Eddie Redmayne, who is not a person with a disability, was playing a disabled man. I wrote a blog about disabled people and cinema a few weeks ago, and far as I am concerned you can never have a disabled person playing somebody who was once able bodied from the beginning of a film about a man who ends up In a wheelchair, it isn’t possible in this instance.

All I was concerned about was the fact that Eddie Redmayne, had to handle this issue sensitively, there is a lot of responsibility to portray not just the staggering achievements of Hawking with the merit it deserves but also to not to glamourise Motor neurone disease or make light of his adversity, whilst not provoking pity either. Anyone who thinks Redmayne had it easy, Is sorely mistaken.

I need not have worried, this film sensitively handled the issues and emotion of a young man coming to terms with a life changing, sobering condition, with grace, humour and wit from whilst not holding back when it came to the strain and struggle it placed, not just on Stephen Hawking, but also his family and friends.

This film stuck a cord with me on a very personal level, I myself have been disabled from birth, but have always been aware that in some respects this makes me very lucky indeed. I haven’t missed what I’ve never had. Ignorance has been bliss and, in the main, I’ve been very happy with the way life has treated me.

Many of my friends, however, haven’t been as lucky, and over the years I have lost friends, far to early than is fair for anyone to bear, I’ve seen the disability rob them of youth, of life and been left helpless as the friends I love disappear into memories. How these friends ever stayed cheerful was a mystery. It seems so unfair that we never drank and drove, we never went to parties, popping pills as teens and yet, they died just trying to live there lives refusing to give in until their last breath.

Watching Redmayne deteriorate as Hawking brought every single emotion I had experienced back to the forefront of my mid and the feelings that are usually kept tightly rained in suddenly came out of me like a flowing river of grief. I missed my friends, who were no longer here and felt pangs of guilt that there was simply nothing I could do for them while they were alive. I also wondered why medical sciences had failed my pals and pondered why they couldn’t be here like Stephen Hawking.

Closer to home, it shone a light on what it must be like for my family, and particularly my Mum watch Me fearlessly independent and sometimes stubborn, to the point where she can see the pain and the struggle I’m in on a regular basis. I know understand, why she is constantly saying ‘let me help you’ and sometimes instinctively doing something without asking if I can manage..

It also made me realise, just what a pressure caring for a person with a disability can be, whilst my disability is nowhere near the severity as Stephen’s. It requires a great deal of effort from my family to make it look easy that I’m dressed, washed and pain free. At the age of 27 my dear mum has to do a lot of jobs for me that, if I was able bodied would be an independent responsibility.

I realised it might not be as easy for my Mum as I think. Maybe I take her for granted? And maybe my Mum, like Jane has quietly struggled to cope with the demands of a disabled daughter in the past . My Mum would never say that she’s not coping, she and the rest of my family, loves me unconditionally but I would never demand that she isn’t allowed help, if she was struggling. I never want to become the girl that is a burden or the girl who’s mate’s visit because they feel they have to. I want them to visit because they want to.

Never the less, on the way home from the Cinema I felt the need to thank my Mum who is my primary carer, for everything she does and for not getting to fed up that I end up hanging out with her lots. I love her, and and wanted her to know that if she ever felt unable to cope, she could tell me.

I began to think ‘who on earth is going to want to marry me’ as I watched Stephen and Jane’s marriage disintegrate into friendship. When I eventually do marry, I don’t want my future husband to think he’s just my carer, I first and foremost want to learn be his wife, his lover and one half of a team that’s unbreakable.

Stephen Hawking is a personal hero to me, despite his barriers he is accepted as one of this world’s greatest minds, he seems to have a great mantra in life that I seem to find myself repeating this in times of struggle.

There should be no boundaries to human endeavor. We are all different. However bad life may seem, there is always something you can do, and succeed at. While there’s life, there is hope

Stephen Hawking