Scrounging Benefit Scum

One of the saddest things to have come out from the 2015 General Election for me is all the gleeful comments, statuses & tweets talking about how pleased they are that ‘we can finally get rid of all the scrounging benefit scum’. So this one’s for you guys…

To all the voters proudly saying they voted to get rid of the ‘scrounging benefit scum’

You do realise you’re talking about me, don’t you…?

Because when the newspapers, the news programmes and all of the parties talked of me what they failed to mention is that I am a part of society that is the easiest to hit, the easiest to batter and the easiest to get to put up and shut up. They have made you believe that I live the life of riley on you. They have created the myth that I am a drain on society and that it’s mainly my fault that the country is in the position it is in now. And they will beat me and batter me and tell me time and time and time again that I deserve nothing, while the majority of you will just look the other way…

I am the ‘scrounging benefit scum’ that works.

I am the ‘scrounging benefit scum’ that is on a low wage.

I am the ‘scrounging benefit scum’ that claims Disability Living Allowance.

I am the ‘scrounging benefit scum’ that received part funded zoomtext & an extendible monitor arm to be able to do my job.

I am the ‘scrounging benefit scum’ that despite the above takes home much less than £1000pcm.

I am the ‘scrounging benefit scum’ that gets free public transport travel, but can’t use it before 0930 to get to work.

I am the ‘scrounging benefit scum’ who despite being severely visually impaired gets no financial help towards glasses.

I am the ‘scrounging benefit scum’ who despite being hearing impaired has to fight tooth and nail to get a semi decent set of hearing aids.

I am the ‘scrounging benefit scum’ that gets no free dental treatment.

I am the ‘scrounging benefit scum’ that would not be able to afford my most precious bit of ‘blind kit’ (Samson!!) if it were not for Guide Dogs paying for his food and vet bills.

I am the ‘scrounging benefit scum’ that had to pay well over £100 for pills when my eye started to pop out of its socket.

I am the ‘scrounging benefit scum’ that hasn’t been on holiday abroad for well over five years.

I am the ‘scrounging benefit scum’ that hasn’t brought full priced clothes for myself in many many years.

I am the ‘scrounging benefit scum’ that still gives to charity, because I know there are many far worse off than me.

I am the ‘scrounging benefit scum’ that despite having worked (full or part time) since I left school, despite being a decent member of society, despite doing my best to live a full & productive life, despite doing you no harm…

I am the ‘scrounging benefit scum’ you hate….

Rambling thoughts...

I've been thinking about the continuing loss of my eyesight recently... More so than I usually allow myself to think about it. 

My 'normal' stance on it is my sight will get worst, my sight might go completely, my doctors can't tell me when or how bad it will get, at the moment there are no cures, no treatment to halt the progress and fuck all I can do to make a difference to it. 

No amount of worrying, stressing, crying, hoping, praying etc is going to make one iota of difference to my life, to my sight as it stands now. 

So for the most part I do my best to appreciate the small things, I love to see the glee my guide dog has when he's free running! 

I do my best to take in as many views, pictures, photos, faces, expressions, colours and find ways of associating sounds, touch and smells to the above. 

I try my best to really take in how my family and friends look, the way their faces change when they laugh, when they're being serious, the sideways glance when I or someone else says something slightly stupid, their mannerism, their posture, their general 'being'. 

I try my utmost not to let my amazement at the amazing variety of colours on trees at this time of year be tinged with sadness, will I see them next year? In five years? In ten?!

When I smell lavender, the rain, cut grass, the salt air at the seaside, the greasy chicken & chips in the high street, petrol while sat in a car at a petrol station I take the deepest breath I can and really, really, really look at what's around me.

Colours fascinate me, I'm not an artist, but I really appreciate colours in the way I imagine an artist would do. A blue sky at 7.30 in the morning is wildly different to the blue sky at midday. I recently saw the sun set on the Thames somewhere between Hampton Court and Windsor... I'd never seen, or perhaps actually never noticed, colours like it before. I can't begin to do it justice in words, but I am so very pleased to have seen it, it is now and always will be in my minds eye. Just like the stars in the night sky I saw when I worked on the side of a mountain in North Carolina and the the stars I couldn't see a few years later when I worked on the side of a mountain in South Wales.

When I think of the things I could once see, that I now can't, my heart breaks a bit. When I think of the things I can see now, that I may one day not, my heart breaks a bit. When I'm told I can't be told how long of 'good' sight I've left, my heart breaks a bit. When I'm told maybe, maybe, maybe you'll always see something, my heart both breaks a bit and swells...

'Maybe' is both terrifying and full of hope...

We are not invisible

As you may, or may not, be aware at the time of writing this a guide dog has been missing for four weeks now.

I can't begin to imagine the horror that the poor guide dog owner must be going through at this time. Ever since getting my guide dog Samson I'd always said my worst fear was that he'd be attacked by another dog... I have to say I now have two worst fears, that he'd be attacked by another dog or that he'd go missing.

If you follow me on twitter you'll know that my time line has been dominated by the hash tags #findtess, #MissingGuideDog & #TESS. I along with the Guide Dog 'family' have done our best to help find Tess in some small way from where we are. Tess went missing in Nairn, Scotland. I live in London, England. I know that people have been spreading the word from Scotland to Dorset, from Manchester to Cardiff, from New Zealand to the USA. People care, people want Tess the guide dog back in her rightful place, at her guide dog owners side.

This is my take on how this search for Tess reflects what our society, our government & our media really think of disability & what place we (disabled people) have in society today...

The national media has steadfastly refused to cover the story. But they've covered George Osbourne's cat getting clipped by a car. the national media have steadfastly refused to cover this story because the 'human interest' isn't strong enough. but they've covered the 'ice bucket challenge' like there's no tomorrow (no one I know gives a flying fart about the ice bucket challenge by the way!) The likes of 'Good Morning Britain' have said that they don't 'do name checks or birthday greetings'. Okay, that's fine... But a missing guide dog isn't a birthday greeting or a name check. A missing guide dog is actually a blind persons life line, a blind persons independence, a blind persons dignity and so much more. It is also, to put a hardened tint on it a 50grand dog, a mobility aid that takes approx two years to train & works (& plays!) incredibly hard for its whole working life, to belittle a guide dog in this way I think is hugely insulting...!

It's feels like Tess is invisible, unimportant & something to be brushed under the carpet. 

Why is this is??!! Ever since the 2012 Paralympics people have told me that Great Britain is more accepting of people with disabilities, that people admire those with disabilities, that access is better for people with disabilities, that people with disabilities have a stronger voice... From my own personal experiences I can tell you that this isn't the case. I've been verbally abused for no other reason than I have a disability. I've been thrown out of shops for no other reason than I have a disability. I've been patronised for no other reason than I have a disability and I'll tell you why, our government has done its utmost to demonise those with disabilities. To screw those with disabilities over. To make people believe that we are the scourge on society. That we are the reason the country is in the dire straits it is in. That anyone that gets Disability Living Allowance is scrounging from the tax payer. That people with disabilities aren't worth the time of day. That our voice or anything we have to say is invalid, insignificant  or laughable. That anyone that gets ANY additional financial support due to their disability is living the life of a playboy millionaire... This is what they've set out to make society believe & with the help of the media they've pretty much achieved it.

They've made us invisible, they've made us insignificant & they've made us invalid. So much so that the UN will at some point, after the next general election it seems (to save embarrassment?!?!) be investigating the 'grave and systematic violations of disabled people’s rights'

http://disabilitynewsservice.com/2014/08/uk-is-first-country-to-face-un-inquiry-into-disability-rights-violations/

I sound bitter I know & that's because I am & I make no apologies for that. I am not a blight on society & I resent the fact that I  am portrayed as such just because my sight & hearing are dodgy. I'm now at a point where I've got so angry at the way the media & government portray me & those I know with disabilities that I have to start fighting back & I will.

But onto the more positive side of the #findtess story & there really are some. Pets at Home have proven that massive, faceless corporations can & do have a heart. They have offered a £1000 donation to guide dogs on information leading to finding Tess. They've emailed their 2million VIP members about Tess & what to do if they think they've seen her. And they've been very active on keeping Tess talked about on their social media & in their hundreds of stores around the UK.

People have been talking, tweeting, emailing, facebooking, leafleting, postering about Tess all over the UK. Celebs, police forces, fire brigades, local shops, online shops & ordinary every day people have been sharing information on Tess. 

So it shows that society in general is 'good' that in general they don't believe the BS given by the media & government & that they DO care about a missing guide dog and DO believe she's more important than a 'name check or birthday greeting'

There IS still hope that Tess will be found, there has been a credible sighting of her which is being looked into as I write.

Tess isn't invisible, Tess isn't insignificant & Tess isn't invalid. 

#findtess, #MissingGuideDog #TESS

To the angry man who verbally abused me,

The other night I got on a train to go home after a long day at work. It was rush hour. There were LOTS of people on the train. It was crowded. there was very little room for myself and my boy Samson to get on. But we did. And yes, it was a squeeze. Nothing untoward about that. It's three stops to my station and so while it is rather intimate, it IS a short journey.

It should have been uneventful, something that was annoying, but something I should have forgotten all about it by the time I'd walked from the station to my front door. But you decided to make it something far more horrible than it should have been. You decided to make it memorable for all the wrong reasons...

You don't know me, you don't know anything about me, you've never met me, you don't know what my financial situation is, you don't know what I do for work and as far as I know you've never even seen me before.

And yet, you felt you had the right to make some very sweeping and damning assumptions about me and you did this very loudly, very rudely and very publicly.

You saw a woman with a Guide Dog get onto the train and thought you'd take out all your frustrations out on me. I think that I'll remember the things you said to me clearly for a very long time, because they were hurtful, they were hateful and they were humiliating. You didn't like me answering you back did you? It clearly wound you up even more, to the point that you were screaming right in my face. I've never seen such hate on someones face aimed at me, when we've never even met before. In fact, I've never seen such hate on someones face aimed at me when we have met. 

Well, here are the answers to your rants that you refused to listen to...

'Why the f*ck would you choose to use public transport at this time with that f*cking dog???'

I chose to get on the train at that time because like everyone else on that train I also was on my way home after a day at work. I chose to get on the train at time because like everyone else on that train I wanted to get home as soon as possible.

'I bet you've just been sat around all day doing f*ck all on my taxes you lazy c*nt!!!'

No actually. That day I'd been doing interviews, inductions, database stuff, filing, a report and all the other day to day admin stuff I have to do in my job. Something I get paid for and something that I also have to pay taxes on.

'F*cking get off and f*cking walk! Get the f*ck off!!!'

Why should I? If you're so offended by my existence, YOU get off, YOU move elsewhere or just ignore me!

'Your f*cking sort get on my f*cking nerves! Me, me, me, give me more f*cking money, me, me, me!'

My 'sort'? You the mean the 'sort that works, the 'sort' that volunteers, the 'sort' that actually has to work harder than you just to get through the day as 'normally' as possible, the 'sort' that doesn't claim thousand of pounds a week (that 'sort' is pretty much a myth by the way!)?

I don't just blame you, although I do blame you mostly, I also blame our government and our media who have done everything they possibly can to demonise my 'sort'. Who allow you to think I am worth nothing more than something you might have the misfortune to tread in, who allow you to think that I am fair game when it comes to random abuse and who allow you to think I should be invisible and should dare to be out in public.

I also blame them for letting every other person on that train to do or say nothing. Who either pretended it wasn't happening or just stood and openly watched. That spurred you on didn't it?

'No one gives a f*cking sh*t about you or your spastic needs! You spastic c*nt!'

Right at that very minute, you're right, no one did. I was very much on my own. I don't think I had ever felt more alone than I did for those ten minutes. Never. I was raised to speak up for those going through an injustice and I have done so on many occasions. I'll continue to do so, but wwill also now know that it's not something to automacally assume others would do for me and that makes me a little sad because I've always assumed that people are in general decent and kind and moral. Not cowards.

I wonder if you went home and proudly told your family and friends that you verbally abused a blind woman? I wonder if you actually felt like a man acting like a nasty little bully? I wonder just how empty and bitter and lonely and unfulfilled you must feel as a human being to do what you did?

But... If your aim was to make me feel about two inches tall, to humiliate me, to make me feel worthless and to make me cry, congratulations. You succeeded.

I have to remember that this, while not unheard of, isn't the norm. I have to remember that my life is obviously filled with more joy than yours is. I have to remember that I am not the piece of scum you want me to believe I am.

And I have to remember that you clearly have a tiny penis!

I 'Heart' my Guide Dog!

Some time ago I wrote a letter to my Guide Dog Samson. He changed and continues to change my life in a way I didn't believe possible. He has made me 'me' again, something I didn't think I'd ever be again. Below is what I wrote, it is just as valid and true as it was back then...

Dear Samson,

I know that you're never going to understand this, and that you'd far more appreciate a dentistix, a tummy tickle or a run in the park. You'll get all that anyway, but I NEED to write this.

Before you, my life was getting darker and darker, and my world was getting smaller and smaller. It took me a long time to accept the condition I have and to realise that I needed something to make life easier and safer.

Before you, I would rarely go out, I'd go to work and come home and turn down 99% of invites because it was more stressful and sometimes more dangerous than staying in.

Before you, I was sinking into a dark depression, where I could not see it ever getting better.

Before you, I'd fall over, walk into Walls, bump into people and constantly ne covered in bruises, grazes and bumps.

Before you, my confidence, self belief and happiness were at rock bottom.

Before you, despite having loving friends and family I felt desperately lonely and scared. No one can prepare you for the terrifying knowledge that one day you might be completely blind and deaf.

Before you, I could see no meaningful future.

Then you came crashing and bouncing through my front door and life... I remember the moment when I first realised I could trust you, that you'd got my back and that your sole aim in life was to ensure I was safe. That was the beginning of the light coming back into my life, and the world throwing itself wide open again. The relief and emotions that came with that hit me like a ton of bricks, and instantly after, I felt freer than I had in years.

You have given me back my confidence, my self belief, my happiness and my independence.

You have lifted me out of a bottomless pit of despair.

Since you've been with me I've only had one fall when out, but that was on a steep hill covered with ice, so can't really blame you for that!! ;)

You have guided me out of harms way, and you have guided me back into life.

I love how you cheer me up when I'm feeling a bit down. I love how I can trust you and that you trust me. I love the obvious joy you have when we go for a free run. I love the fact that you are an absolute tart for a tummy tickle. I love your very naughty streak when you decide you want to be naughty. I love the way you're thrilled to me when I come down in the morning, your whole body wags, nor just your tail!!

I love that you have given me back my life, my pride and dignity.

You are my gentle brute, my daft brush and sensitive soul.

You are more than 'just' my guide dog. You are my mate, my saviour and dare I say it... My hero.

Thank you Samson!

2012

2012 has been one hell of a challenge so far, more so than any other year!    

Without a doubt the biggest was my diagnosis of Thyroid Eye Disease (TED) at the beginning of this year. In a nut shell my thyroid has been working overtime and then decided to attack the white blood cells behind my eyes... In turn making one of my eyes 'pop' out. It's uncomfortable, it aches, it's tiring, it's stressful and really really unattractive. Right now (and for the most part of this year) I have been rocking a very uncanny Popeye impression! When I was first diagnosed I was put on a course of medication, 30 odd pills a day, gradually going down to none... Which made no difference whatsoever. The first few times taking them I threw them straight back up, not nice at all! It felt like I was going to hospital every other day to have the (very nice it has to said) Nurses doing colour tests, Doctors putting drops in my eyes and then shining bright lights in them, and then measuring the amount the eye was popped out by, then to be told by my Consultant that everything was the same. So now, I've got a date for an operation to 'pop the eye back where it should be'. I'm both pleased and nervous... It will hopefully make everything alright again, but then again, it's an operation on the eye... That's a bit.... EEEEEK!!! 

Then Samson, My beautiful, daft, lovely boy was taken into Guide Dog hospital to sort out an ear infection that just wasn't going away! 21 days later I got my boy back. 21 days of missing him. 21 days of realising just how much I have come to rely on him. 21 days of feeling a bit lost. 21 days of having no soft velety ears to fondle. 21 days of not going at the speed I am now used to going at. 21 days of people asking when I was going to get Samson back.

Then, TWO root canal treatments!! I don't think I need to say any more on that matter!

Then the challenge of working in London during the Olympic Games.... At an Olympic Games venue. Each day the way into work was changed, the security checked got more strict each day and each day trying to concentrate and not get distracted by the bellowing cheers and whatnot.

There's been more, but these are the main ones that I think I'll remember for the rest of my life. I'm actually quite proud of how I've dealt with it all. A couple of years back I would have sunk into a pit of depression and not known how to claw my way out again. But this year, I wobbled right on the edge of the pit and then pulled myself away from it. 

Why? How?  I have learnt to be more honest, with myself and with others. I have realised that saying to people 'you know what, I can't do that because my eyes hurt, but if you'd like to do this instead that would be great and be easier for me to deal with' doesn't make people think I'm being selfish, and that actually they'd rather hear that and help me.

I've learnt to relax.

It's been a while...

A very long while in fact, but here I am again!

I have excuses as to why I've not been doing this blog for so long. But main and most valid one is that I've felt the most happiest and content and 'yay, life is actually quite good!' than I have in a long long long long time. I used the blog as a way of trying to sort my head out, as a way to try and make sense of what I have, as a way to talk about it without using my mouth and without crying.

Because that how it worked. I'd talk about it and I'd feel like crying, or I would cry or I'd very quickly change the subject.

From the very first post I felt like a massive weight had been lifted from my shoulders. That I am able to articulate and tell people how I felt and feel.

Don't get me wrong, I still have the times where I feel sorry for myself, where I just want to curl up in bed and never leave it and times when I still feel totally and utterly stunned. But I don't feel like that everyday... Now I go days, weeks and months and months feeling good.

And that's probably the main reason I haven't been doing this blog, I haven't felt like there's been anything horrible, horrific or hollow to write about. So I got out of the habit of writing.

Well, I'm back now (not that anything terrible is happening!) with a sidekick! I feel like I want to carry on recording what life is, the good, the bad and the ugly!

This isn't really a proper post, it's more of a reintroduction! See y'all soon!

Guide Dogs, Part Four.

So the next stage of the assessment was where someone completely different came out to do a walk and have a general chat with me.

It was at this point I was starting to realise what an indepth process this whole thing is/was! I hadn't even had a mere sniff of a guide dog yet and they (the people from guide dogs) have been out to see me four times, each time was a minimum of an hour and a half. I now know that this long process is good for everyone! It reassures the people at guide dogs, and gives them lots of time to find out what sort of person I am. My work life, my private life, my family, my friends, where or what I like to do for holidays it's all found out, but not in an intrusive way. It's done in such a way that you feel like you're chatting to a mate!

All this information gives them a better idea of what sort of dog would be good for me.

It was good for me, as we really talked about why I felt I needed a guide dog, how it would effect my life, (both good and maybe not so good!), and how I would most probably have to change my whole approach to life really. Talking about all these things in an open, positive, and no holds barred way helped ,e to know that this was the right path to go down.


So next, I was invited to an over night stay in a hotel in London, to meet some guide dog puppies who were fast approaching the end of their final stages of training!!

There were three other blind/visually impaired people there, eight puppies, and what seemed like thousand of trainers!! When we first got there we were shown to our rooms and told to settle in and them come down to the conference room in half an hour. I sat on the bed and thought to myself..... 'Really..... Seriously..... What on earth am I doing here?????' I was starting to have real doubts, I've NEVER had a dog before, we were a family who grew up with cats! Most of my mates have cats! What if the dog they gave me was horrid?! What if I turned into one of these mad people who let their dog 'kiss' them???

I then gave myself a shake, and thought, tonight is like a trial run, if I don't like it, I call it all off!!

I took a deep breath and walked downstairs....

Honestly, I had nothing to worry about! My fellow blindies were lovely, and like most Guide Dog Owners I've since met, were larger than life characters, intelligent beyond belief, but also very 'normal'.

So first up we were given a dog to do some basic obedience training with. I was given Josh, a very very very laid back gingery Retriever, he did pretty much what he was told to do, but there was a definate 'I'm not too impressed that YOU, who I've just met is telling ME what to do!' vibe going on!

We were then given another dog and taught how to groom it, to say that these puppies enjoy a groom is a MASSIVE understatement! The amount of tail wagging and looks of pure bliss on those faces had to be seen to be believed!!

Then I was given Josh again and we went out on a harness walk... I don't like to say it was a failure, but when the instructor says that the dog 'is taking the mick' you get a pretty good idea that this might not be the dog for you!! :)

Back to the hotel, where we had lunch and the chance to talk to a Guide Dog Owner and hear how it was, the good, the bad and the ugly! It was really useful, because she was saying that no matter how annoyed, frustrated you might get with your dog, the pro's of them far outweigh those niggles!

Then it was another harness walk with another dog (whose name I cant remember which makes me feel terrible!!), this walk was pretty uneventful, the dog did exactly as it needed to do, but there just wasn't 'that' spark!

Back at the hotel we were told that we were now going to be given a dog to look after overnight in the hotel room and that we were going to be going out on a night walk with it. Nights, dark nights for those of you who have read all of this blog will know that they are my most stressful times, especially, crowded roads at night, with streetlights here and there and cars with headlights glaring away!

So it was with mixed emotions when I was introduced to Forrester, he was totally and utterly stunning, when he came into the room I was thinking, please be for me!!! He was tall, slim, and black, and they brought him over to me! I started gushing all over him, telling him he was beautiful, whilst at the same time wondering how the hell could I trust an animal to take me for a walk and not let anything happen to me?????

Guide Dogs, Part Three

Well..... it's been a while, and I do have my excuses.

1) I had to do some pretty intensive training with my guide dog.
2) I had to put a lot of time and effort to sorting out my work situation.
3) I started a new job!
4) It was Christmas!
5) It was New Years Eve!
6) My laptop has died a death!

Hopefully you will all understand that all the above combined made me put the blog on a bit of a back burner! I'm here now though, and fully intend to stay!

So..... Guide Dogs Part Three! From the list of excuses above, you will have probably guessed that I now have a Guide Dog! I'll try not to rush into how amazing he is just yet, and continue nicely from that post about Guide Dogs!

After the initial assessment an appointment was made for Dee to come out again for us to go out on a walk, for her to get an idea of how I walk, my pace, the sort of roads I use etc. The day came around and Dee arrived. First off we just walked down my road with her besides me chatting away to each other.

She then asked if I'd mind doing a short handle walk. This is where the assessor (Dee has a shorter version of the handle on a Guide Dogs harness, I held one end, Dee got down on her hands and knees and off we went! Naturally I'm joking, she didn't get on her hands and knees! we just carried on walking her slightly ahead of me and winding about a bit. I actually felt a bit of a plank during this bit as the road I was living on at the time was, and probably still is a busy one! But needs must, I'm pretty certain it helps to match me to a dog, and isn't just an exercise in looking a bit silly!

After about ten minutes of this and me feeling a bit smug cos Dee told me I was very good at following the harness (understandably I guess most people with some remaining sight find it hard to 'let go' of the responsibility of looking after themselves!), we then did an exercise where I stood at a cross road looking straight ahead and telling Dee when I could see the car she told me was coming. That was a real wake up call for me to be honest... It took a long time from Dee telling me, to me actually seeing it!

We then sat by the river, it was a beautiful sunny hot day and talked some more about the possibility of me getting a dog.

She told me that someone else from her office would be coming out to do another walk assessment and after that I would be invited out for an overnight stay in a hotel to meet some dogs, and to work with them.

Thats all for now folks!

Deaf.

I'm going to talk a little more about the deaf side of Ushers. It's something that we, (from now on assume that 'we' means those of us with Ushers!), don't really talk about much.

So why don't we? Because we're ashamed? Because it's too big a subject to our heads around? Because we don't know how to articulate what it's like to be deaf?

I don't think so, and having spoken to others who have Ushers, Type 2 at least, I think I might have an idea why.

It's because we were born deaf. Well..... Partially deaf. The Deaf world is a funny one with the labels it gives people. But thats something I'll talk about a bit later!

So, born partially deaf, hearing aids from a very young age, speech therapy, the ability to lip read, the saying 'Sorry, I can't hear you, let me turn on the light/put on my glasses!', the ability to 'read' body language far better than hearing people, mishearing things people say and either being really embarrassed or having a right old giggle about it, ignoring people if they're just behind you..... It's endless!!

But unlike the sight, it really doesn't feel like an issue for me. Being deaf is me, it's a massive part of who I am, it's formed my charactor, my personality and I suppose my stuborn nature!

One of my favourite things to do is to listen to music without my hearing aids in. Just have the music on, and feel the music through the floor, or through the chair. It's actually really really relaxing!!

I like that I can just ignore someone irritating if I choose to, and then say 'Oh I AM sorry, didn't hear you darlin'!!'

There are bloody annoying times with the deafness..... Like those who actually tell you that you are NOT deaf, 'Hmmm, I wearing these hearing aids as a fashion statement do I???'

Or those who when you ask them to speak clearly either start shouting or just over exaggerating the way they speak. Shouting doesn't make it clearer, and taaaaaaaaaalllllllllllllkinnnnnnnnng liiiiiiiiiiiiikkkkkke thiiiiiiiiiiiiiiis certainly doesn't make it clearer!!

However, if someone were to turn around tomorrow and say 'At the flick of my wrist, I can give you hearing, proper hearing with no hearing aids!!'

I'd say straight away, with no thought 'No thanks!!'

Canadian Nuns!

I thought it was about time I wrote a little something about the deafness side of Usher Syndrome. So here is a little tale from the deaf side.....!

Years ago, there was a knock at my front door, I opened it and there stood two Nuns..... It sounds like the start of a bad joke doesn't it??

I can assure you that the following really happened, I don't have the imagination required to make up something as surreal!

So... Two Nuns on my doorstop, me holding the door open with my mouth ever so slightly agape!

'We're from Canada!!' One exclaimed.

There was a slight pause and I realised that I was expected to say something,

'That's.... Nice.....!'

I continued to stare at them as they stared back at me. For me it was beginning to feel a tad akward.

See I'm not a religious person, I don't go to Church, I don't pray, I don't believe in God, Jesus, Allah, Heaven or Hell or any of the other stuff religion likes to preach.

I do celebrate Christmas, but for me that's about family, spending time with them, telling bad cracker jokes, eating with them and just enjoying each other... For me, there's no religious aspect to it at all!

As a result, I've never really had ANY interaction with any of the faiths, so to have Nuns on my doorstop really threw me off balance!!

'Erm.... Can I help you at all?'

'Yes!!' Big grins from the pair of them, 'We understand that a deaf person lives here?'

Now my mind felt like it was going to explode!! Nuns on my doorstep who knew that I lived there???!!! How the hell would they know that??? Maybe there was a God and he had told them?? Maybe I'd got this religion malarky all wrong!!

'Err..... Yeah..... That would be me.'

'Oh no,' one of them said, 'you're not deaf.'

'Pardon??' (see what I did there???)

'You're not deaf' she said, I don't think she got the irony of having to repeat what she said! 'You see, we've come over all the way from Canada to help the deaf community in the UK hear the word of the Lord.' Again two massive big grins. 'So could we speak to the deaf person? We've been learning sign language especially!'

By now I was internally feeling a little bit freaked out. It felt a bit sinister. It was dusk. There were two Nuns grinning at me almost manically demanding to speak to a deaf person and not believing it was me!

'Seriously, I'm that deaf person.....' and pointed to my hearing aids.

They looked really puzzled. 'It's just that... We were told that a deaf person lived here'.

'Yes... ME!! And WHO told you this??'

'Oh we can't tell you that.' Big grins.

WTF...... Am I on some kind of religious deaf list??

'So, you're the deaf person?'

'Yes.'

'Can we talk to you, about God and Jesus?'

I didn't want to be rude, after all they'd come all the way from Canada, and learnt sign language, so I just said,'There's not much point really, I don't believe in God, and there isn't much you could say that will change my views.'

Yet another big grin from the two of them.... 'Yes, because you're deaf and can't hear the Lords voice, and we're here to help you.'

I stared at them again..... Feeling a tad annoyed that they would say something like that to me.

And then the normal me came back, it was like I had arisen from the cave and realised what was going on!

'I find that quite an insulting statement to make actually, I'm not non-religious because I can't hear all that well. I'm a non believer because I have the intelligence to make up my own mind, and not be brainwashed into believing something that, which lets be honest, is 99.99% certain to be a myth!'

It was their turn to stare at me with their mouths hanging open. I stared back at them for a few more seconds and then quietly closed the door. Went back into the front room and sat down, 'Who was that?' asked my brother,

'A couple of Nuns' I replied.

I would like to add, that although I personally have no religious beliefs I respect the beliefs of others... I just don't like it when people, or Nuns, try to make me believe!!

Guide Dogs, Part Two.

Like many people, I'd always assumed that Guide Dogs were for those who were or are completely blind. Something I would never think about as I had been told that I would always have some vision!

I couldn't but feel a bit confused when a lady I've befriended on Facebook, with the same Ushers as me and who as far as I knew had some sight, had a Guide Dog!

So I got in touch with her and was basically very nosey! Asking her what field of vision she has, at what point she was entitled to a dog, how she found having a dog, why she had decided to get one etc!!

She was really kind and answered all my questions and told me that in fact there are no criteria for getting a dog, (you have to have a visual impairment obviously!), and that she had found a new lease of life when she first got her dog!

She encouraged me to at least looking into getting a dog, and said it would change my life!!

So I spent the next few days reading the Guide Dog UK website, talking to various friends and family about it and ringing the number to make an appointment but hanging up before it had even rung! As far as I was, and am concerned, this is a MASSIVE decision. It's me saying to myself, 'right Usherchic2, you need some sort of help.' And for me..... Admitting this does NOT come easily!!

Eventually I rang, let the phone ring, let the other end answer and said while shaking like a leaf.......

'Hello, I'm calling about applying for a Guide Dog.......'

An appointment was made for someone to come out and see me, and now the ball was well and truly rolling!!!!!

I asked my brother to come along, for both moral support, and to have someone there to hear the bits I might not hear or just plain forget!

Me, my brother, the lady doing the assessment (Dee), her trainee (Dave) and his guide dog! My brother and I instantly fell in love with the dog, he came in with his big brown eyes, waited for his owner to tell him to sit down and just sat down with a massive sigh, as if to say 'thank god for that!!'

For the next three hours, we talked, about when I was diagnosed, how my life had been effected, why I felt a dog would benefit me, what a guide dog actually does, about my road, how I felt my world had become smaller, and god knows what else. Dave also spoke about his experiences, how having a dog had improved his life.

After all this they told me that I seemed like an ideal person for a dog! (EEEK!!!!!) We made a further appointment to go for a walk, so they can get an idea of the way I walk, and what kind of dog would be most suited to me.

I really like/d both of these people who came into my home and spoke to me about the life changing experience I am about to embark on.

Dee is someone who can chat for England, she obviously REALLY knows her stuff, she's sympathetic and empathises without a hint of patronisation, (I'm not sure if that's actually a word, but you get the gist!).

Dave is a man who it seems can chat for Wales! A huge presence, and bucket loads of dignity. He told me never to lose mine, as it's something no one can ever take away from me. It really struck me and I hope that I will keep hold of those words.

After they left, David and I sat on the settee, had a fag, chatted about all that had been said, and then went to get some chips!!

Guide Dogs, Part One.

I'm getting one. It's a massive step for me, and a sign I think, that I'm finally realising AND accepting that I need extra help..... Those who know me will know what a big thing it is for me to think this about myself.

I'm very independent, and find it really hard to ask for help. Stubborn as well, which again, doesn't help much with the hole 'I can do it myself' attitude.

Loosing your sight takes a massive chunk of the independentness... It sometimes makes you think 'Do you know what..... I'm not going to do such and such, or go to here or there'. Because what should be an enjoyable thing, going to the pub, going to a museum, going to a party, whatever it is..... Can become stressful and totally unenjoyable before you've even got there!!

For instance, just stepping out of my front door to walk down to the train station no more than fives minutes away can be a trail. If it's really sunny, it's hard work. The glare from the sun, even when wearing sunglasses, makes it so everything becomes hazy and glarey. Think of really over exposed photo's, where everything looks really washed out and even ghost like. But add the fact its BRIGHT. The amount of people I've walked into because I've not seen them is countless! It's also embarrassing. People think you're ignorant, rude, stupid..... I'm none of those things!

When it's overcast, it's hard work. Everything becomes duller, you don't necessarily see where the curb is. Curbs and roads are quite similar in colour, and unless you intently stare at the floor, you don't always clock it/them. Stubbed toes, jarred hips and knees can be quite painful. And again, it's something I do all the time!

If it's raining, it's hard work.

If it's drizzling, it's hard work.

If it's snowing, it's hard work.

It's not only the fact that I have really limited vision in the degrees. My eyes take a few minutes to adjust from coming from outside to inside, from inside to outside, from one room to another, even getting onto a train or a bus takes my eyes a few minutes to adjust to the difference to the lighting.

There's also the fact I get bursts of white lights and black spots... You know when someone takes a picture of you with the flash on and you go 'eurgh!!!!!' I get that ALL the time! Not continuously, but it's always there, and there's no rhyme or reason as to when it'll happen either!

It's tiring... It's knackering.... It brings on migranes...

Because my brain is going at 140mph, I'm constantly scanning, the floor, to my sides, up ahead, back to the sides, the floor, the sides, up ahead, the floor and so on and so on and so on and so on and so on and so on.

Plus, I don't hear people coming up behind me. The shock of someone suddenly appearing from nowhere is massive.

Sometimes I feel like I'm on a constant adrenaline rush..... Again, its knackering!

And as I've said before, you can't see my disability, and therefore I look 'normal'. As a result, people don't make allowances for me, don't give me the space I need more than most people.

So sometimes I'll think..... 'I'm not gonna go, I'm gonna sit in and watch a DVD!'

I hate thinking like that. I hate that I might have missed out on something really fun. I hate that people might think I'm a boring fecker. And I hate that one day people might stop asking to things!!

So I'm in the process of getting a Guide Dog. I'll tell you more about that in the next instalment!

Thoughts

When people find out that I have Usher Syndrome, or more importantly realise what Usher Syndrome actually is they more often than not tell me that I'm brave. Or that they couldn't imagine having to deal with it. That they would most likely not be able to carry on. That I'm an inspiration. That I must be incredibly strong. That I'm a special person. And the most odd one.... For me at least, that I must be a 'good' person.

When people say, email, text, facebook, MSN etc these to me, I find myself feeling really uncomfortable. Because I am not any of these things, not really, not especially. I'm actually a fairly ordinary, average person!

I'm not brave, I sometimes still feel like someone has punched me full whack in the tummy and winded me when I think about it. I still think to myself that it's REALLY unfair. Although I wouldn't wish this on my biggest enemy, I wish it was someone else who has it, not me. To me, this isn't brave, it isn't cowardness, but it's certainly not brave either!

I've met a young adult, not quite sixteen years old, who has Ushers Syndrome. She's brave. she puts herself out there, telling people about her Ushers, gives talks in front of numerous people and doesn't falter in getting her view of the world across!

When people say they don't think they could cope, I think to myself 'You would..... Because, well, because you have to!' You find out you've got something, you don't just give up on the world. The world, your world doesn't just fall away. It becomes different yes. But your friends are still there. Your family are still there. Music is still there. The news is still there. Ashes to Ashes is still there. Your favourite meal is still there. Dog poop on the pavement is still there. Day trips to the seaside are still there. Holidays are still there. Death is still there. Your cat is still there.

You see, the world in general doesn't change. It's still there, offering you the mundane, the amazing, the horrors, the highs, the lows, the laughs and all it has to offer. There are days when you think, 'it's crap, it's horrible, I hate it.' You wouldn't be human if you didn't, but more often than not, it's actually pretty bloody good!

Those who think I'm special, or automatically a 'good' person, couldn't be more wrong! My Mum thinks I'm special, but she'd think that regardless, she's biased, she's my Mum, it's allowed! But I'm no more special than the next person. People deal with far worst than I do. Person work far harder than I to try and make the world a better place. In that sense, I'm actually quite a selfish being!

And as for being 'good'..... Well, I was brought up well. I don't intentionally hurt people. I'm polite, I have morals and ethics, I smile at people on the street, I watch the news and feel a slight sense of despair at what goes on. But I don't actively fight a cause for the greater good, I've picked up money on the street and pocketed it, I've thought that someone deserves their rough justice for whatever it is they've done wrong!

So just because I have this condition, it doesn't make me better than the next person.

I'm flawed, simple, complexed, staintly, wrong, right, self aware, self involved, stubborn, passive, assertive and as many other opposits you can think up!

Just like you, and you..... And you, you, you, and you!

Thank you.

Well.... I've not written for a few weeks, and can blame nothing other than my lax behaviour!

There's been a lot going on, and lots of exciting developments, but I'm not going to talk to about them this week, they're to be saved for the next instalment.

This week I want to pay tribute to my friends and family.

I started this as a way of talking about me and my journey through coming to grips with what I have, Ushers Syndrome. The cheapest form of therapy if you will......

Don't get me wrong, it's still all about me! But thinking about what to write, getting feedback from complete strangers and from those closest to me has made me realise that this doesn't effect just me.

Forcing myself to think about how things effect me, in turn forces me to think about how it effects those close to me.

I have an amazing group of very close, very dear friends to me. Your ability to talk absolute crap or to listen to me rant, or whinge or just listen to me be a bit down in the dumps is invaluable. I love that you keep me grounded and still moan at me about whatever's going on in your lives. Or share the exciting things that are going on. To not let what I have define me, to accept that it's a part of who I am, that I am still who I was before I found out about Ushers.

In no particular order, Jayne, Jo, Luke, Claire, Whitney, Mike, Stephan, Nisha, Agi, Elly, thank you for being the best a gal could ask for from friends!

My oldest friend..... Who probably knows me better than I know myself... Sam, thank you for letting me cry on your shoulder, for making me laugh, for getting me inexcusably drunk when I need it most, for letting me bare my deepest darkest thoughts and never judging me and for never letting me feel too sorry for myself!

My family.....My Nana, who will probably never read this, for her undying belief that at some point there will be a cure and for constantly worrying about me walking or being out in the dark!

My Aunt, for all those lunches or general meets for no reason what so ever and who has an unshakable belief that I'm going to fine come what may.

My Uncle, Pete, my fellow drinker in the family :-D who has listened in an amazing way for someone who talks so much! My strongest older male role model. Pete, I don't, and haven't for many years thought of you as my Aunts husband. You're MY Uncle!

And then the two most important people.... My Mum, Trish, and my brother David. I don't think I can ever put into words how much your love and support over the past few years has meant to me. I've kicked out at you two emotionally. I've cried at you two. I've laughed with you two. I've sat in silence with you two. I've leant on you two. You two have listened to me. You two have just been there. I've taken so much more from you two than I've ever given. And you two have never complained, never got narky, never told me to feck off and most importantly have silently been there for me.

David, you're a gentleman, a gentle soul and someone I try to be like most of the time..... Annoying at times, but I guess that's a little brothers duty eh???

Mum, you're the best Mum in the world.... I honestly don't think there is any other way of putting it. You're selfless, kind and beautiful inside and out!

I guess the whole point of this is.... I find it hard to say in person, and I know I do not say thank you.

So, to all of you.......

Thank you.

Humiliation.

I wasn't going to write about this, but have decided I will as I told myself I would be as open and honest about Ushers as I can be.

And now I've decided to write about it I have to do so now so I don't lose the nerve/bottle at a later date!

Yesterday morning I was waiting for a bus to get to work. The sun was really bright and despite having my sunglasses on the glare was glaring in a glary manner! Now, for those who don't have or know about Ushers, sun glare can be a right pain in the jacksie. You know those really over exposed photo's, it's a bit like that. plus my eyes water a lot when it's like that, so I have to contend with the blur that watery eyes give as well.

The bus came, the doors opened and I went to step on.

Before my foot hit the deck someone, a man, barged into me so HE could get on before me.

Because at that precise moment I was on one leg it knocked me sideways. My shoulder hit the side of the bus. I stacked and ended up on the road between the bus and the curb.

The man spun around and started shouting at me!

Apparently I should have been looking where I was going. I was taking the piss. I was making it far worst than it actually was. I was trying to make him look bad. I was a fool. I was f*cking waster. It was all my fault.

He then went and sat down.

The bus driver didn't anything other than look at me.

Behind me a group of teenagers were laughing.

No one asked me if I was ok. No one helped me up. I got up and walked away.....

I have never been so humiliated in my whole life. I have never felt so ashamed to be me. I have never felt quite as vulnerable as I did then.

So much so I didn't tell anyone at work once I got there. I didn't tell any of my family that evening.

No one wants to admit this sort of thing happens to them. But I am going to admit to it, because it takes a fair bit of bottle to do so, and I reckon I got that bottle!!

Buses and trains.

I recently had cause to think and write about trains, it's not as geeky as it sounds.... And I'm not a closet train spotter..... Honest!!

And it got me to thinking about public transport in general. And how much of a pain it can be.

A train journey can be a stressful experience at the best of times for most. Overcrowding, delays, cancelations and last minute platform changes can make the most patient of people lose their rag! Throw into the mix a duel sensory loss such as deaf/blindness and suddenly it’s an absolute minefield!

Announcements over the tannoys can be difficult or impossible to hear, especially when train announcers seemingly specialise in white noise and mumbling!

It can be disconcerting when everyone on the platform suddenly runs, jogs, hops, skips, barges and elbow their way to another platform as if they have received a telepathic message that you have somehow missed out on. The boards show no changes, your train shows no signs of appearing, you know the train you're waiting for is the last one of the night OR the one just before the massive crush of rush hour..... So you make the decision to find someone who might be able to help you!

You stride down the platform looking frantically left and right looking for the man or woman in a blue coat with yellow trim, and they're nowhere to be seen! You reach the barrier and there's no bugger there either! So you end up hanging around, either totally on your tod, or with thousands of people pushing pass you to get to where they want to be. It's stressful..... Sometimes it makes you panic a bit cos you feel like you have no control what so ever. Eventually you find someone and ask what has happened to your train,

‘There was an announcement’ you are told brusquely,

‘Yeah, I didn’t hear it though because –‘ you start, but before you have a chance to finish you're told

‘You should have listened to the announcement, you’ll have to go back to the main station to see when the next train is.’

You try again to explain you didn’t hear the announcement, and that going back to the main station could be very difficult, as you are also blind.... Deaf/blind in fact..... But you're just met with a blank gormless face and a shrug of the shoulders.

Buses are just as bad. You get on, pay your fare, settle down with a book only for the bus to stop two stops later and about 15 stops before yours, with the whole bus filing off!

When you ask what's going on, more often than not you're told the next one will be along in a bit..... And of course you can't get on that one cos everyone bundles in front of you, shoves you out of the way and when you FINALLY get to the door it shuts because not a single other person could possibly squeeze on!