As I think most poeple who have any regular contact with me will already know Gus has had an on and off limp for the majority of this year, nobody was too worried because although it kept reaoccouring it was not a bad limp and as long as we did not go too heavy on his workload and avoided stairs and to much jumping about he was largly fine. He was oftern excited and wanting to work even when he was limping – He loves his job of coming everywhere with me.

It just kept coming back and I was worried about Gus working even though he wanted to if he was in pain.

So about 5 weeks ago now he underwent a CT scan of both his front legs and later surgery to look inside his joints with a camera, I was dreading the outcome as the problem has persisted for so long I had convinced myself that it was going to be really serious and end his carrer there and then. I was warned of all the horrible things it could be and just had to pray that it was something that could be fixed or if no treatment was avalible that Gus could get good pain managment and have a long and happy retirement. Althugh the thought of Gus retiring breaks my heart, I felt I had to do what was right for him and I would not want him to carry on working with me if he was in pain.

When I got Gus back after 2 days in the specialist vets we got the news that a ligament in his shoulder was almost totally tourn, he must have at some point over the last 9 months been in a great deal of pain, but he never showed it! whenever I took him to see the vet he seemed to not limp at all and really didn’t show any great discomfort when they examined his joints. More to the point he kept working with me even though some days it was probably sore, he still guided me safely, we had no accidents, he still went mental whenever he saw me put my shoes on – He still wanted to work even though working was painful!

The recomendation from the vet was at least 3 months of total rest and gradual rehabilitation but that he would make a full and total recovery. Four days later Gus left for the guide dog hospital in Lemington Spa he is expected to be there until April. I get regular updates about his progress and know he is in the best possible place where there are people looking after him 24/7 for cuddles and careful play time. As the weeks go by he will start physiotherapy and hydrotherapy and eventually going for gental walks on the lead.

So I have no guide dog and I feel like a massive part of my life is missing and my heart is breaking for him! My mobility has taken a massive knock too, because of the christmas shopping period I am really restricted as to where I can go on my own. Town is a total NO and even if I do venture out further than the local corner shop I have to make sure I am back in my flat by dark.

I’m normally a totally confident cane user, I’ve traveled too and from central london on my own with just a cane before but as I did my cane training when I was 15 I never did night work or work in busy places like the Janurary sales! Further knocking my confidence a few months ago I was knocked down by a cyclist whilst out with my cane. It was not my fault and there is nothing I could have done differently to stop it from happening as the maniac went through two read lights before hitting me leaving me in the middle of the road before cycling off!

The whole expereince of being without Gus has really made me reflect on the work of guide dogs.

When Gus left my confidence and independance left with him as well as my companion and friend. I would not go as far to say that I took Gus fro granted but suddly loosing him although only being for a short time has really made me think of how wonderful Guide Dogs UK are.

So I end this post with a plea, next time you see a guide dog collecting tin pop some change in it or even better organise an event to fundraise for Guide Dogs or Sponsor a puppy.

Guide Dogs get no money form the govenment and rely totally on donations from members of the public – there work is amazing and you don’t have to take my word for it check out the video below.

Now my first question here is do we really need one?

NHS direct has come under a lot of flak for taking doctors and nurses out of hospitals and putting them in call centres – They also have to take action for the worst case senario when someone calls them which often leads to people being Ambulanced to hospital when they don’t neccessicarly need it.

I recently had the experience of being involved in an accident one evening, I should have gone to Hospital, a walk in centre (well at the time more hop in) would have been ideal but NO!

My local hospital with a walk in centre closes its doors at 9pm minor accidents and injuries do not happen in Gosport after this time.

This makes the nearest hospital with any form of A&E style care more then 10 miles away according to Google maps the journey would take around 45minutes in a car – I shudder to think about the cost of that in a taxi.

As it happened I was totally unable to get any treatment after my accident, the next morning I decided the pain of walking was not worth the 5 minutes down the road to the local hop in centre  so didn’t bother, had it been open at the time of my accident I would have defiantly sought medical attention.

So what would we all rather  - A new phone number managed in a call centre with lots of nice forms and paperwork and computer systems that break OR Hospitals actually being open, with enough nurses and Doctors and HCA’s and cleaners and receptionists and the right equipment when you need it?

What I am going to talk about is insulting and offensive words surrounding disability.

Recently I have gone back to being a guide leader after a 3 year absence and I was shocked by the language they used to insult each other, it appears the word ‘retard’ has come back into linguistic fashion as an appropriate insult for your 13-year-old mate.

I had naively hoped that ‘disability insults’ had disappeared from society when the disability rights movement moved out discrimination and in the Disability Discrimination Act (2004). I assumed that it was no longer socially acceptable to use an offensive slang term for a person with a disability as an insult – I am wrong.

It’s really got me thinking about language and its development and progress though usage in society, I have attempted to think back a decade and assess the disability related insults that were used in my school.

I have many unpleasant memories about my education; of bullying, harassment and verbal abuse. Although I was called a lot of nasty things at various points by people so insecure about themselves that they had to pick on someone to feel good (I REALLY pity them) I really don’t think any of the words used where on a par with ‘retard’.

I could be wrong but I think young people in my generation understood (even if they did not actually realise it) the history behind such words and that the use of them was socially unacceptable.

So I find myself challenging todays generation about their language and the way they insult each other and wondering what I can suggest they use that isn’t the dreaded ‘R’ word?

I also wonder what other offensive terms for disabled people will once again rear their ugly heads as playground insults; mong? spaz? cripple… I’m sure the list could be endless – Which I think says a lot about our society on the whole.

In the current economic climate I think its fair to say the DDA is not being enforced as much as it should be, money is getting in the way and proving yet another barrier to the access needs of disabled people, of which many argue that the DDA never went far enough to change the way society views disability.

I know form my own experience that discrimination against disabled people is still rife I currently feel that Southampton City Council have acted in a discriminatory manner towards me and continue to do so. What will be done about it or change it? Nothing unless at some point I can secure funding for a case under the DDA (something I admittedly have not looked into yet).

With the many cuts and changes to the benefit system effecting disabled people, in addition to negative news stories focused on how disabled people are apparently a drain on society and can contribute nothing to the wider world is it any wonder that our kids are turning to disability to get there insults?

NEWS
As what is beginning to look more and more like a war on claimants hots up, last month saw the introduction of a  ‘forced labour’ scheme.
(Members only).

Many thousands of claimants will be obliged to work for up to 30 hours a week for a month for no wage whatsoever. There is no limit to the number of times claimants can be forced onto the scheme. Those who fail to comply will lose their benefits for 13 weeks for a first offence and 26 weeks for a second offence.

The scheme is aimed at JSA claimants, but with so many people likely to fail the new work capability assessment, that may well include thousands of  sick and disabled claimants who are deemed not to be trying hard enough to move into work.

The propaganda war is also becoming more vicious and ill-informed as the DWP feeds easy to misinterpret figures to the press and then looks the other way as hate-provoking misinformation fills the tabloids.

For the claimants on the front-line, there’s s also the shocking news of the lack of disabled access at many Atos medical centres, which most claimants are obliged to attend for their work capability assessment.   An astonishing one in five centres don’t have disabled access and Atos lists just one dedicated disabled parking space for the use of around a million claimants a year.

FIGHTING BACK
The government aren’t having it all their own way, however.  Below is a quick round-up of  anti-cuts actions over the coming month that you may want to support.

A national week of action against Atos is scheduled to begin on 9 May with a picnic and party in Triton Square*, home of their head office, at 2pm.

On May 11 thousands of disabled people, their friends and families will be holding a march and lobbying parliament to protest at cuts to benefits and services.

The Justice for All campaign, which is fighting to save free legal advice, is holding a day of action on 3 June, which they are hoping members of the public will take part in.

PRESS
Radio 4’s You and Yours programme is working on a report about the work capability assessment which may at least present a more honest picture of what is really happening to sick and disabled claimants.  As part of the feature they are hoping to talk an Atos health professional – anonymity assured.  If you are one of the Atos staff who read this newsletter, why not contact You and Yours in confidence?

You and Yours are also hoping to hear from people who have received a reassessment letter and are awaiting a medical or who are appealing an ESA decision.  More details here.

Elsewhere, a freelance journalist writing a piece on the forced migration from incapacity benefit to ESA for One in Four, a mental health service users magazine, is keen to hear from anyone who went through the Aberdeen or Burnley pilots or who is going through the reassessment process now.

To read this and more:

http://www.benefitsandwork.co.uk

Mind and Soul : 16 things not to say.

Things not to say

Yes, these have all been said! Yes, actually to people’s faces! In BOLD: What you said. Then: What the person heard!

Just give it to God!
One quick prayer and it’s all over, sorted, done and dusted!

Have you tried praying?
Just a thought, maybe you haven’t thought about it yet, you know even though you’ve been a Christian for 15 years?

Pull yourself together
You need a stiff talking to and someone needs to tell you

We all feel like that sometimes but you have to snap out of it
You know you’re not suffering anything else that no-one else doesn’t feel now and then so why can’t you just snap out of it like everyone else does?

Are you reading your bible?
I know you’ve been a Christian for 15 years and you use to preach, but maybe you’ve forgotten that when you are so ill and you cannot rationalise, you’re seeing things and hearing things, you can’t make sense of your words and anything or anyone around you, you’re visions blurred and your head feels like it’s going to explode, you can just pick up your bible and claim a scripture! It’s great isn’t it, as simple as ABC

I’m not getting into the boat with you – you’re full of self pity
No, I’m not even going to listen to anything you say as that would mean that I’m getting in the boat with you and agreeing with what you are saying and that would mean that I’ll be helping you simmer in your self pity and I don’t want to be classed as a negative person like you

Just fight it!
Just refuse to feel like that in the name of Jesus, refuse it, rebuke it, don’t receive it?

I’d never allow myself to get in that state
Sorry but what’s happened to you, will never happen to me, I’m fit, healthy and loving life, no way will what’s happened to you happen to me!

You’re looking really well
You look like there’s nothing wrong with you, in fact I think you’re making it all up, cause to me, you look like everyone else

It’s your own fault
I was reading Job the other day, what sin is in your life that you haven’t confessed and dealt with yet?

There’s no such thing as depression, you’re just feeling sorry for yourself
What is all this poppycock about depression and illness? you need to get a grip and stop pretending you are ill

You’re a hypochondriac
Honestly, there’s people out there who are really ill, I think you enjoy it

Shouting at someone
I need to disciple you, discipline you and put you right, now STOP IT

Why can’t the doctors do anything?
Why can’t the doctors sort you out? I mean they’ve always sorted me out and everyone I know so why can’t they sort you out? Tell me? It’s very frustrating and I can’t work it out

You should just stop taking all those tablets and just trust in God
Now I have a physical condition so if I stop taking my tablets, I would die, if you stop taking your medication nothing will happen apart from you will be trusting God more and you won’t have any side effects, so simple!

It’s a choice – you can change if you want to
Yeah… of course I choose to hate my self and wish I was dead… Thank you for pointing out it’s just a choice that I need to make

Things to say instead

This is OK to say in BOLD and This is why it’s OK. It’s not as hard as it sounds. Just be kind and empower them

If you want to talk, I’m here to listen
I care about what’s happening to you and need to listen to you as a friend to show you that. Then I can understand and help you. I realise this is going to take longer with someone who is mentally ill.

I’m praying for you, do you want me to pray for you now?
I don’t have any magic answers and I’m not trying to give you one but what I can do is pray for you. I know God answers prayer.

I have some practical wisdom I can share with you.
Because I’ve spent time with you and listened to you, I can see you need rest, space, food, spiritual advice etc and can help you.

I have no idea what it must feel like because I’ve never suffered from mental illness but I can understand it better now
I can’t contemplate what it must feel like to be mentally ill and I can now have sympathy to anyone with mental illness because I understand it now.

Could I help you spiritually in any way, perhaps share some scriptures that you may be able to draw strength from?
I can’t imagine what its like to not be able to draw from my bible because I’ve lost the ability to think clearly and be in control of my mind. If I can help by writing some scriptures out or reading from the bible for you, or get some bible tapes for you, I will.

Shall we go out together somewhere? Can I take you out somewhere?
Special times with friends help and if I can help take you out for a while it may help you escape from the same surroundings and focus on something else for a while. It must be awful when you are to not be able to go out at all because you are ill and you’ve lost your work world and other social outlets.

I can see your not feeling great at the moment, do you want me to go and come back tomorrow or another day?
I can appreciate that if you’re having a really bad day, I should come back another time and I’ll be able to help better

Do you need help getting your medication or a lift to the specialists?
This is a really practical thing that you need and half an hour of my time would be a real answer to prayer to you

Talk to them about something positive in their life, or an improvement that you’ve noticed
Sometimes when you are so in the middle of something and experiencing it every day you can’t see the small improvements that are happening or recognise an achievement or progress

Find out any likes, hobbies, what makes them laugh and work towards helping them achieve one of these
Laughter’s good medicine, we all need purpose in our lives and to feel we’re achieving something.

Help them work through a panic attack, and irrational thoughts.
Help them to breathe by going through simple exercises, pray for them, talk through calmly their thoughts and help them rationalise them.) All the physical effects it can feel like you are dying and is very scary. This can be very draining yourself especially if emotionally attached so take time to recuperate yourself after.

Don’t give up on them; it can take along time and a lot of hard work to help someone recover. They need friends and loved ones to stick by them.
Medication alone won’t do it; it’s all the social help and one to one work and prayer that will see the breakthrough

Alan and Amanda Stephenson, 05/05/2010

The Universal Disease By Jeannine Nield

Someone starving, bleeding, crying
Screaming, tortured, slowly dying
How do you feel when you see
These scenes of pain and misery?
A crippled man with sightless eyes
With him you surely sympathise

A women battered black and blue
No doubt receives your pity too
How good we are at sympathy
When pain and torture we can see

But What if tears are left uncried
And screams and anger locked inside
With memories of abuse and fear
And hopelessness year after year?
As a child I was neglected
Ridiculed, ignored, rejected
Sexually abused by Dad
Yet grew up thinking ‘I’ was bad

Despite this I did well at school
But still I suffered ridicule
With others I could not relate
And so turned inward all my hate
No confidence, no self esteem
To be accepted was my dream
Tried sex and drugs to fill the void
But there was nothing I enjoyed
Poured out my heart to my GP

Where upon he labelled me
And down my spine there went a chill
As he pronounced me ‘MENTALLY ILL’

The fact that I’ve a high IQ
And that I’m kind and loving too
And with great talent have been blessed
Means nothing – because I’m depressed!
Twice I’ve attempted suicide
It would be better if I’d died
Because I’m still ignored, rejected
Ridiculed, neglected

Many so called ‘normal folk’
Treat my illness as a joke
Full of anger, scorn and greed
They seem oblivious to my need
And yet it’s ‘normal’ types like these
That fuel the fire of my disease
But I would rather be like me
And try to live in harmony
Than have a heart that’s full of hate
And skin as thick as armour-plate

You could help me to get well
To climb out of this living hell
Offer me a helping hand
Show me that you understand
Put away your needless fears
And all your preconceived ideas

‘MENTALLY ILL’ is just a label
Yes – I’m insecure, unstable
But if you’d lived my life instead
You, too, would be depressed – or dead!

For a while now i have known I have a problem with mine, it all started way back when I started trying to wear contact lenses again, I was getting on fine with them, and gradually increasing the time I spent wearing them, not wearing glasses was great! As far as I was aware there where no problems until I went for a check up and it was found that my corneas on the other hand HATED the change and where dye was placed in my eye they shone back brightly in such a shade of fluorescent orange that the optometrist doing my contact lens stuff was utterly shocked and ran off in search of a camera. She didn’t find a camera but immediately stopped all talk of contacts and reffered me to see my eye consultant, this is probably approaching 2 years ago.

I was diagnosed with corneal oedema, basically flid filled sacks where forming on my cornea as a reaction to having higher than normal intraocular pressure (caused by Glaucoma) a change in medication and no more contacts for me and the general consensus of the consultants I saw was that all would be well.

unfortunately that was not the case, my corneas have continued to be cloudy, and got cloudier. To be perfectly honest I have not really noticed this except maybe when I am very tired I fund I struggled to read even large print as everything is just rather blurry. I was refered to  a corneal specialist.

Now we are back up to me sitting in the doctor’s office a few weeks ago, I was fully expecting on seeing Mr Corneal Specialist that I would simply have another change of medication and that would be that problem solved, what I was essentially told was totally unexpected and a total shock to the system.

It turns out I need a corneal transplant in both eyes, this involves taking the cornea from a donor (yes a DEAD PERSON) and implanting it into my eye, once my own damaged bit of cornea has been removed.

This is because the cells right at the back of my cornea are dying as a result of all the surgery I had as a baby that saved my sight in the first place, apparently it’s happening to everyone who had the kinds of surgery I had back in 1988. My cousin born a few years before me with the same eye conditions has exactly the same problem. So the death of the cells in the back of my cornea is causing them to break away from the rest of my corneal float around and get in the way turning all cloudy and full of fluid.

Cornea transplants are quite common and are more often than not successful and rejection is relatively rare, and if the worst does happen they simply repeat the surgery. However for me there are more risks, my eyes are smaller than average and I don’t have a lens which is normally critical in helping the eye keep its shape during the surgery.

On the plus side the surgery might improve my vision, I say this but too much of an increase of my vision would defiantly be a negative for me. I have always been at very best partially sighted, if I was offered a drug that could get me full sight tomorrow with no risks and a 100% guaranteed success rate – I would not take it! I am happy the way I am being blind is part of my entire identity I have never really known any different to suddenly be fully sighted I would struggle to cope with such massive life change.

On the other hand the surgery might not work, it could all go terribly wrong and might damage my vision further.

However by far the worst case scenario is that I do nothing, slowly the condition of my corneas will deteriorate and I will lose all the vision I have, the amount of pain I experience in my eyes would also increase. This scares me, as much as I don’t want to be fully sighted I don’t want my vision to deteriorate dramatically either, I value the eyesight I have enormously and the thought of going totally blind is heartbreaking for me, it would without a doubt turn my life upside down, as it would with anyone.

It’s been a difficult few weeks trying to work out what I want to do about all this ready for when I speak to Mr Corneal Consultant again in a  few months time, the decision actually seems clear, I have to go for surgery and just hope an pray everything goes to plan. To further complicate matters I am not ashamed to say I am rather phobic of hospitals, them make me incredibly uneasy. I am lead to believe that the surgery requires a 2-3 day stay in Hospital. I can just about cope with a visit to the eye unit the thought of spending time actually IN hospital scares the pants off me – As it would lots of other people I’m sure.

I see Mr Macular Consultant at the end of this month and there was talk when I saw Mr Corneal Consultant that I need to see a Glaucoma specialist as well as things are not to stable in that department at the moment either, apparently I may have come to the end of the road when it comes to glaucoma medication too, meaning I might need more eye surgery to do something for my glaucoma too.

Overall in it’s a particularly unhealthy time for my eyes, but there is still hope!

For those who like to watch disgusting things here’s a link to a Youtube Video of the type of surgery I need, I warn you it’s not nice to watch!

I should explain for the beginning – Way back as a teenager in secondary school I was started on a programme of touch typing using Mavis Beacon Teaches typing. I used this software once or twice a week to help me learn to touch type. At the time I hated it and sometimes sat at the computer on my own doing nothing except possibly eating the bar of chocolate I had stowed about my person, of course I quickly lurched into action if there was a teacher around! Some days the cheating was impossible and I kind of liked the idea of being able to type really fast without looking at the computer keyboard, plus my parents and teachers regularly told me how important the ability to type would be in my life – for all the skiving and the boredom I did take it seriously! Even back then I knew that my hand writing was incomparable to even my peers with the scruffiest writing, I often struggled to read my own hand writing and positively felt sorry for my teachers who had to read anything I had written in a hurry.

Progress was PAINFULLY slow but I stuck at it, my journey was helped greatly but the sudden emergence of (as it was back then) MSN Messenger, I guess this increased the amount of time I spent typing even if I was hunched over the computer keyboard looking at the large print yellow on black keyboard stickers!

Bare in mind at school and to an extent college I was expected to hand write during class, most homework assignments had to go into our exercise books at school, My typing was considered to be at to infant a level for me to be eligible to use a Laptop in classes, this is probably true it was probably not yet faster for me to type than it was to write but I perhaps feel for everyone’s sake it may have been easier for everyone to read if I had typed it. Eventually I must have been in year 9 or maybe even year 10 my typing was considered fast enough to warrant me being loaned a laptop, a whopping 37 words a minute (WPM) I belive. The first laptop I was given I eagerly carried home, turned on and it crashed, I got a blue screen of death and then it turned itself off. It was replaced a few days later by what can only be described as a BEAST of a laptop, it was incredibly heavy and brick like, the power pack was quite possibly the size of a standard house brick and equally as heavy.

So anyway back to the topic in hand since using a laptop more first at school, college and then full-time at university and for play my typing speed has improved greatly.

I got an incredibly sense of nostalgia when whilst wandering thought Apples new App store I came across Mavis Beckon teaches typing ’11 ultimate edition.

I was however disappointed to discover its impossible to make the practice fonts bigger in this new edition, meaning I made mistakes because  I could not read what I was supposed to be typing unless I hunched with my head very close to the screen which is not good posture for typing! As a result my average WPM scores were incredibly disappointing!

However there is a silver lining to the situation here. I discovered this evening that the Mavis Beacon software has a built in visual typing gauge that can be viewed whilst you type in any document or frame.

It has spent most of its time whilst i have been writing this sat around the 80 to 100 WPM mark, the scale only goes up to 100 WPM.

This is exciting! considering the adverse human being speaks at roughly 90 words a minute this is a very good thing.

Since upgrading to Mac OS Snow Leopard MacSpeech Dictate failed to work as it was not compatible, forcing an upgrade at the time I decided against it as MacSpeech Dictate used to drive me mad with its lack of accuracy. I spent more time correcting MacSpeech Dictate then I did actually using it to be to dictate text the commands were difficult to master and the whole process seemed totally unnatural. Added to my frustrations was that I also had a US version which just seem to further complicate matters.

Previously I had to use Dragon NaturallySpeaking or Windows based computers and found this to be largely successful was completing my A-levels, some of my coursework was completed in its entirety using their software without spending hours training and constantly correcting it so my hopes MacSpeech Dictate were quite high; I was very disappointed.

I said quite recently that DragonDictate had been a huge leap forward in terms of speech recognition to the  Mac OS, I decided somewhat uncertainly that I would give it a bash and I must say I’m very pleasantly surprised!

After very little training the speech software is able to do a very good job of recognising my speech, it makes very few mistakes, and most of these I can tell are due to my own hesitation/slurring of words or commands (no I’m not drunk)!

My only criticism is that the processing speed seems quite slow, although this could be because I speak quite fast,  all because of my computers processing speed however I am using a 2008 MacBook Pro.

I have had the software less than 24 hours and still is fiddling around with the correct ratio between speed and accuracy, but I would seriously recommend it.

I have deliberately left in mistakes in this post as I wanted to give a real representation of the accuracy I am achieving after having the software less than 24 hours, so please forgive me! you are