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

Brave little Chicken

People always think I’m a confident woman, someone who never afraid to speak her mind and tell you what I really think.  In most aspects of my life you’d be right.

I believe that it’s my disability  that’s made me into the social animal I am today, I’ve become a character that isn’t easily forgotten. It’s not a coincidence my hair is vibrant either…

There is one area though, that makes me shy away and quite frankly petrified, so much so that I hardly recognise who I am. Whilst at work, I’m known for being an ambassador for all things good and equal it’s at home,  and more specifically in my personal life,where in unsure of myself.

When it comes to finding a bloke I like attractive, I seem to be a little  it chicken to admit my feelings to the object of my desires.

I can count my romantic experiences in one hand. (two..at a push) They are very few and far between, it usually begins as a friendship, the two of us finding a common ground, an interest, I perhaps make him laugh and he grows fond if me. My mind, god bless it, convinces me I’m in love and, boom there I live, for the foreseeable future, dancing between flirting (which I’m terrible at) and friendship, never really knowing if the feelings I have are reciprocated.

I talk to friends, me over analysing, asking for advice that I listen to but don’t ever take, no intention of doing the one thing that would end my turmoil and being honest about my feelings..

Why? Because for some stupid reason I’m convinced and terrified that guys will laugh at me and tell me that I never stood a chance anyway.

I know that this is a sweeping statement, but unfortunately this has been my experience.

What’s worse is, I recently had been playing it so cool that the window of opportunity had passed me by because of my inability to just be honest, I had liked this guy from a distance for years, never said anything because I was shy.. Then when we did get talking, I realised we were near perfect for each other, yet still never said a word, I thought he liked me the same way I like him, so didn’t feel the need to wear my heart of  my sleeve and be a Burke… I had just plucked up the courage to say how I felt and he gets a girlfriend…

I could have cried.  My stupid pride got it the way and I was the looser.

What was I protecting, if I’d had been honest with him sooner, and told him how I felt when I realised what I felt… Then maybe it would have been me.

Instead I was ashamed of my emotions, I let the fact that I am a person with a disability shame me into keeping my mouth shut.

The moral of the story is, don’t keep your mouth shut, tell people how you feel especially if you think you love them. The alternative is unrequited, uncertainty.  Never let go of an opportunity for happiness. If it doesn’t work out, well, at least you were honest.

Next time I will be a brave little Chicken.

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If that Girl can… So can I

I love the new ‘This Girl Can’ campaign from Sport England, It’s massively empowering, and in the mists of a pretty rubbish January, where all this Wonder Woman wants to do is polish of the last remaining Quality Street, in between naps and Netflix binge It actually made me want to do some of this thing they call fitness.

If you haven’t seen it, here it is:

It doesn’t show skinny, tanned, condescending Barbie Dolls who look immaculate. It shows sweaty, blood pumping grit and determination to not necessarily get the size zero emaciated look but you get the sense that they want to feel better about themselves, to look nicer, not for a certain person but for them. So they’re not living with self consciousness, but are in fact happy in there own perfect skin.

With one half of my body, not fit for purpose and half of me looking like a potato, it is hard for me to pick out anything I’m overly fond of and when it comes to clothes, nothing quite fits right, something which I talk about in a blog I wrote last year Fashionably F**ked.

I know that the root of all this is partly to do with my weight and the fact it’s become clear I am fatter than I’d like. I don’t feel confident in clothes when I have to dress up smart. It’s like dressing a hippo and when I am dressed up smart. It isn’t long before I’m uncomfortable and end up in the loo taking my tights off

Disability doesn’t make you feel lady like, and being larger than you’d like makes simple things like transferring from chair to bed or chair to car far more difficult than it should be. I don’t want the tanned, toned body that the gym bunnies have, I just want a body that isn’t struggling to cope with disability and a layer of fat.  Simply put I want to be a Girl that Can.

Disability and Sport have enjoyed a happy marriage since London 2012 and when ‘The Superhumans’ trailer made its debut onto telly, I have to admit it was the first time I had ever felt like my disability was cool, it was empowering to see disabled people, who have been through some of the toughest challenges, whether their disability was acquired or not, and yet, there they were being a bad ass, not wanting pity, just wanting to compete. It makes me feel proud to be disabled.

People were, quite rightly memorized by the achievements of the Paralympian’s, and since then the number of Questions I get ask through sheer awkwardness, isn’t ‘Isn’t this weather awful?’ but now more ‘Do you do Sport? Those wheelchair races are amazing’. While this is fantastic, that we’ve moved on to more social conversation starters. It makes me feel lazy, because my answer is always ‘no’. I wish I was up for sport, I’d love nothing more than to dribble a basketball rather than dribble longingly at the donuts in the Supermarket but I hate exercise, People seem to think that because I’m in a wheelchair, I’m a fitness freak.

The trouble is it’s a bit all or nothing with disability sport, you can either choose to do nothing or at the very least the bear minimum or you can join a disability sport club, whatever it is you’re interested in there is a disability equivalent for it, Basketball, football, tennis, or for those more adventurous Murder ball.  All of which are great, but I’ve never been one to join clubs, I don’t want to join in with an outfit that’s already been established. I’m a team player for most of my life but for me there is something that I don’t feel comfortable with getting fit in a group of people who are also disabled is something I fear.

Most of the Super humans in the advert have a sense of balance and core strength. Balance and core strength is something I’ve never had. It up and left with my legs that worked and like a heartbroken lover my body has never got over it, my spazzy legs get over excited, like a dog that’s been shut in all day when my brain thinks about racing anyone, my mouth dribbles when I over exert my body and I am likely to fart, loudly all the time throughout a work out. I might need Missy Elliot to rap loudly behind me as I work out to distract people from the breakdown my body is having.

That and the fact that I cannot throw for shit and I’m so overly competitive I might bite you if you look like your beating me, I once broke a girls arm, who had brittle bones, in a school game of hockey. Team games aren’t my thing.

So I’d rather do it alone, quietly and steadily, with people periodically mentioning I look slimmer, with no big deal, until I look knockout at a party or on holiday, in a ‘Christ she’s fit’ (in both senses of the word) element of shock.

But if you decide to go it alone, finding fitness that you can do on your own at home is none existent, the Wii was good until I realised that in fact you can just use it with very minimal effort and still get high scores is ridiculous.

There are no DVDs, No off the shelf equipment for anyone who’s disabled. We can’t run, walking up hills is a ridiculous notion, and gyms need to be more accessible. The support for disabled people who want an average fitness regime isn’t there, and I can’t be the only one, who doesn’t want to be a superhuman, training for hours, years weeks without a sniff of alcohol or frightened to have a cake.

I’d just like to be an average human.

The Great Pretenders.

I’ve always been a huge champion of diversity and in particularly disability in mainstream media. To me it is massively important that the media industry reflects that of actual real life, purely for personal life affirming reasons that I’m not a freak.

It’s also always been important to me that where possible, jobbing disabled actors and actresses should be used to portray disabled people on screen. To me, it just makes sense, there’s no real need for a disabled actor to take time researching the disability they have been cast to portray if they already have it, and surely drawing from experience as an actor makes for a more convincing performance?

I think there is a tendency for able bodied actors to use the casting calls for disabled characters in dramas and use it as an opportunity to expand their ‘skill set and talent’ section of their CV to include ‘can convincingly play a spastic’. Almost like bragging rights as to ‘I’m a better actor than you’ .

British television has, in my mind improved with their track record of more inclusive casting calls for shows Coronation Street and Eastenders, for instance, both now feature actresses who are disabled.

my view is that Hollywood are slightly more reticent about giving disabled actors and actresses the parts that occasionally crop up. the first thing is that there aren’t many films which feature disabled people as the lead protagonists. You don’t ever see a disabled woman locking lips with Ryan Gosling do you..?

Secondly, Hollywood is a funny beast, powered by Beauty, something which isn’t always closely associated with disability, and greed, in the main, if your movie doesn’t get bums on seats and tickets sales don’t rocket within an opening weekend, it’s considered a flop.

So in order to get those tickets sales to sore you need a big name, and the more big names you have, the better, but your film is about a disabled girl who finds happiness with Ryan Gosling, and the studio, who are paying you to make the movie have stated, they want to big names in the lead role… What big name do you know, who is instantly recognisable both in Hollywood and globally who also happens to be in a wheelchair and is actually properly disabled? The answer is, there isn’t one, and there in lies part of the problem.

I’m not saying it’s right but unfortunately it’s the truth. The film industry is fickle.

It’s also sometimes not always appropriate to cast a disabled person in a film or television programme about disabled people, specifically if the character suffers a turn of events that lead to a disability being placed on them.

At the time of writing this, I have yet to see the new bio pic The theory of Everything, about the early life of Stephen Hawking, with Hawking played by Eddie Redmayne who by all accounts is fantastic.

A small number of Disabled people are complaining that disabled actors missed out on playing such a great role. With all due respect to these reviewers, it is not possible for you to cast someone with the varying and vast degenerate condition that motor neurone disease possesses, you can’t cast someone who is in a wheelchair with the loss of speech when they are supposedly portraying someone who in their teens was not effected by motor neurone desease.

There has been a small amount of critics who have said that you wouldn’t be allowed to black up in movies these days so why should you pretend to be a cripple, to me these arguments are completely different. You can’t to my knowledge suddenly change ethnicity in your life span and it is far easier to get hold of a black actress or actor to play the part of your lead in your big name, block buster of a rom com. Race is not such a dirty word in Hollywood these days.

So no, you wouldn’t black up, but I can definitely understand why able bodied actors and actress can sometimes be used in films and television to portray the devastating and life change effects that an acquired disability can bring to anyone’s door.

So long as the actors in question treat the subject of disability with the respect we deserve and can help to show the positive aspects of a life with a disability can bring as well as not sugar coating the pill, then why are disabled people concerned?

Hollywood and the television industry is still by no means perfect, and there is work to be done. I don’t know how to combat this, I wish I did. Until then though we should be celebrating the fact that, the life of Stephen Hawking, a man who despite his huge personal barriers has managed to achieve so much for the world of science is now more understood by people and no longer known as ‘The guy in the Wheelchair with the computer voice’ and you never know, it might just change general perception of disability too

Life is for living…

I often suffer from frustration, it comes from my body not being fully up to speed with my brain, I have limitations which when you are as ambitious and as thirsty for life as I am it can result in a bit of pouting and the occasional yelp of this isn’t fair!

I’ve never been one to just accept what I’m told, If I am told ‘you won’t be able to do that, because you’re disabled’ my answer is ‘Watch me!’

A friend of mine said something to me before he died which has stuck with me ever since. It was the last thing he said as we were leaving the bowling alley after a mini school reunion. I had no idea it was the last time I’d see him and his parting words were:

You should never be afraid to let your heart race, it’s telling your head you’re not done living

With a quick squeeze of my hand and a wink, we went home. I never saw him again.  Since then it has become even more important to do things I want to do, no matter how implausible they might seem, because life to me, is all about experiences and laughter, and living life to the full.

I started to build a bit of a bucket list of ridiculous things I want to do everything from a ride on a zip wire and zorbing down a massive hill to wing walking and going ballroom dancing just like those pretty girls on the telly, I know that some of these will be impossible and that I won’t be able to do some things but goals are good.

I can’t go achieving these adrenaline filled activities without the support of a fantastic group of family and friends who listen to my dreams and either facilitate the reality of the dream or comfort the blow by giving me a vast list of downsides to my next adventure.

I have always wanted to go Ice Skating, but my legs let me down on that front, my friend often says, “Trust me your not missing anything it’s cold, wet and once you’ve gone round once, it’s a bit boring”  this stop my pestering but it didn’t stop me from wanting to experience it.

We’ve never managed to do it.. well, until last night that is, I went with two of my friends to the Frankfurt Market in Birmingham after several rounds with the Bratwurst and beers we headed to the ice rink knowing how much I’ve always want to do it they said we’d give it a go.

We were cold, wet and full of beer and frankly we should have been heading home but my mate was determined to get me on the ice after eventually locating the rink and they way in, we got booted up, many a head turned when the steward asked what shoe size I was..

“I’m not walking, mate” I said he looked positively baffled when I said I wasn’t going to sit it out and was infact going out on the ice with my chair.

it was more like a swimming pool, my friend was pushing me and clung on for dear life all the way round but it was fantastic I was gliding with ease no hills or steep inclines just flat ice.. and alright so , I wasn’t ‘skating’, but believe you me I was channeling my inner Jane Trovil. I loved it, and it was at that moment I realized that I am richer than i deserve even if to the outside to some may not be normal or perfect.

My friends and family are simply the greatest if it wasn’t for them I’d have never swam in the sea, I’d have never have got to the top of the hill in Prague where the palace is and I most definitely could not have gone ice skating.

It’s  for one second, wasted on me that I am one of the lucky ones. I know for a fact that there are disabled people who don’t have people who can help give them the experiences for which I crave, some live with people who really couldn’t care less —  I’m very loved, and only hope everyone knows how much I love them. The enrich my life ways they’ll never know.

….A few laps round an ice rink, and I get totally emotional…..

Loneliness, love and life affirming lies

Loneliness can form on many different ways, sometimes it’s hard to realise that you are lonely and once you do, it can be quite a sad state that in its depths, there seems no way out.

I sometimes get lonely, my life consists of being surrounded by people who like me and appreciate me and yet I sometimes get a yerning for more.

It’s no secret that my love life has been none existent up til know, I’ve never been on the receiving end of the kind of closeness that comes with an affection that is chosen and not an instinct. It’s this that makes me feel lonely the most.

It’s never a constant feeling, and sometimes I think giving it a label sounds far more dramatic than it is. It’s more like a feeling of being ‘fed up’, when you go out and all your mates are in couple or that feeling of disappointment when you have another Saturday night in watching crap telly instead of going out somewhere fancy, with someone you fancy.

My frustration with love led me to signing up to Internet Dating in a pit of despair. I talked myself into it over a month, telling myself, that’s it’s far better to be pro active, than it is to do nothing. Nothing happens on its own, and in this case, my love life was like a frightened puppy that needed coaxing out from behind the sofa.

I struggled for a while, deciding or not whether I should mention that my wheelchair is included in the package, straight away I’m put at the bottom of the barrel with the fat, Middle aged single parent offerings, the dregs of the dating world.

A month, six months a year and 18 months went by and nothing no interest, not a single fuck was given by anyone.

More disheartening than the feeling of loneliness I was trying to shift by a mile. I considered on many an occasion to delete the profile and never speak of it again, but something always stopped me. 

I remember reading an article that said the attitudes surrounding disability, love and relationships where improving with the amount of people who admitted they would consider a relationship with some with a disability had risen in recent years.
I have yet to experience this statistic, but never the less it gave me hope. So I stayed on the site a bit longer, in what I can only be described as a loveless marriage, with one of us refusing to give up hope.

I’ve deleted my Online Dating profile.
I’m not saying I’ve given up all hope, nor am I saying that there aren’t things happening that may lead to more in the future but these opportunities haven’t come from the Online Dating site. It’s come from my own doing.

The bullying tactics to make you stay on these sites are horrendous. They are designed to make you feel like a failure, to play on that put of despair slump you experience when the loneliness really takes grip.

They make your mind think that you can’t survive without them, in exactly the same way diets do, promising you a better life if you stick with it, hoping you swallow the idea that the reason you’ve failed is because your not doing something right.

Truth is, Online Dating is shallow, it hasn’t delivered in it’s life affirming improvement strategy  and if you’re not quite the norm people don’t want to know, you’re personality means nothing..

It certainly, hasn’t enhanced my life boosted my confidence, it’s other things, other people who have made me realise that actually I shouldn’t ever class myself as the dregs of the dating world

I’ve realised that for me finding love is, as frustrating as it may be, a long game, I need to be friends first and if anything else happens because of the time we’ve gotten to know each other. Then, well that’s amazing.

It’ll happen. Eventually..

And if it doesn’t? It isn’t the end of the world.