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! 

Dating Disaster 

So I’ve been debating wether or not to talk about this for a while. Up until now, I’ve struggled to talk about it without sinking into a pit of despair and humiliation. But here we are, with me staring at this page feeling like I should share this with you, dear reader. 

It all started back in November, in a quest for love, more than 18 months previous I’d signed up to an online dating site. Got the most part, I infrequently checked the app to see if I had any messages. I never ever did, so last November I decided to delete my account and give up on love. 

As I went to part company, I noticed that I had received a message at long last! The message said ‘you sound so full of life, (I’d made an effort with my profile, after countless rewrites) and you  have eyes I could drown in.’

I thought he was trying to he nice, and we’ll at least it was more than a one word ‘hii’ so I replied. Genuinely thinking he’s lose interest in me once he found out about the wheelchair. He didn’t, and as the days turned into weeks we found ourselves enjoying the messages. So much so, he asked me on a date. I was retesant at first, onlu because I’d never been on a date before. But after repeatedly asking me, and reassuring me everything would be great. I said yes.

The first date went brilliantly, he turned up, we had stuff in common and conversation flowed. So much so he wanted to see me again. 

He didn’t know when though, he was a teacher and with the end of term fast approaching, he’d be busy on the lead up to Christmas. 

I’m not one to get excited about things to hastily. I hadn’t told many of my friends I was dating until I was sure what was happening, the constant ‘good morning’  messages were so nice to wake up to. He’d tell me I was beautiful and how he couldn’t wait to see me.

He even surprised me at the German Market with my friends, kissing me and holding my hand without bothering if anyone saw, it made a nice change from fellas who were scared of telling me how they really felt because I’m in a wheelchair. 

He made an effort with my friends, wad nothing but gentlemanly and even my friends were impressed. For once I was happy, if was what the first flush of love felt like. Sign me up for the whole lot. 

Slowly but surely, my non existent confidence grew and I started to feel worthy this genuine guy really did like me 

Or so I thought.. 

It was a Friday night. I hadn’t heard from my date all day, which was unusual, I’d get at least a ‘morning’ text.. But today I hadn’t. I’d spoken to my friend who’d talked me down from a panic and fallen asleep sure that in the morning, he’d be in touch.

I woke up at 4am, knowing something wasn’t right, I had a compelling urge to Google his name. I don’t know why, but that’s exactly what I did. 

I typed his name and the School he worked at as a history teacher in the box..  ‘The school are currently looking for a history teacher’ said the website. My stomach learched.

I then typed his name and where he lived. Up popped a result from the local paper, an article appealing for people to help him find the engagement ring he gave to his fiance. 

‘Andy’ wasn’t on Facebook, but his fiance was. So in complete disbelief I sent her a message telling her everything. To my surprise she didn’t seem all that shocked, telling me I should  ‘Talk to him’ with confirmation it was indeed the Man if been seeing. 

I texted him.

Long story short. He lied. About everything, apparently he had his reasons, although, when I asked what they were he didn’t tell me.

I was devastated. Still am, just like that he was gone, destroying what little confidence I had. So damaged, I don’t know if I’ll ever get it back.

I can’t trust many guys anymore and I really don’t know how I’m ever going to find anyone who will fancy me again.

I’ve deleted the online dating site and I don’t intend to return.. But as someone who is never looked at twice when dating in the conventional way, how do I find my Mr Right? If I’m honest, I’ve never felt more alone. 
Ask Me how I am, I tell you that I’m fine, I have great friends and a loving family, but now I know what I missing.. And it’s something that can make you feel amazing. It’s killing me more than before.

Maybe I’m never meant to find love. 

I hope Andy is happy with his wife. He’ll never really understand the extent of the damage he’s caused.

This will be my year.

Twenty fifteen is giving it’s final curtain call, and twenty sixteen is waiting in the wings. 

As we await the deluge of ‘New year, new me’ social media posts. I have to admit I’m dreading the start of a new year, purely for the fact that I hate standing in the brink of the unknown.

I will I grumble at the prospect of a new year being a disappointing prospect. 

I am incredibly lucky. There are many of my loved ones and dear friends who would love to be where I am. On the brink of the unknown. I miss them tremendously.

I don’t believe in New Year’s resolutions, they are designed to fail. Instead I will open myself up to new adventures, experiences, without hope or agenda that by doing so will make me a better person, all the time being the same as I have been for the last twelve months, and the twelve before that. 

It’s experiences that make a life – I’d be lying if I told you there’s nothing I want to change about mine, but why people feel the need to set targets for these changes at the beginning of every year baffles me. no amount of wishing will work either.

Doing it this way, being kind and calm about life will make me happy and if you are happy and positive. Things will, eventually be alright.. 

No amount of complaints about the past will change your future. Learn from everything you do and call it wisdom.