#DWP & #ATOS at it again please read! – #disability #ESA & #ATOS

I just read an article that has hugely saddened me, please keep reading and follow the link to get the full story.

A blind woman has been made seriously physically ill by ATOS and the DWP working in a way that totally disregards the Equality Act.

Having just read the facts of what happened I am so stunned that I really don’t know what to say.

The matter boils down to one of what’s sometimes called a print disability. The term print disability can be used to describe anyone who is unable or would struggle to read standard print. It’s an umbrella term and can be used to describe conditions such as total blindness, dyslexia and intellectual disabilities.

In this case the lady in question uses Braille or audio instead of standard print and ATOS & DWP are unable to produce this.

They then told her that she would have to find someone to fill out the form for her.

The stress of this landed her in hospital.

As I said at the beginning this saddens me you might think that’s a strange reaction, maybe it is but for me it’s personal.

As I’ve mentioned before my mum is almost totally blind her way of dealing with written correspondence is Braille.

My mum requested the same form as the woman in this story in Braille and got the response at the other end of the phone that said ‘I’m not sure if we do Braille but we should I will try and get it for you’.

The form the arrived in standard print with a deadline to have it completed and the threat that missing that deadline will result in loss of benefits.

My mum is lucky she got help from my dad and a local charity but for thousands of other people this is not the case.

I have also had help to fill out the form in question. I’ve also had the stress of trying to get it done in time for the deadline bearing in mind I get one hour of support a week!

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What Is Hypermobility Syndrome?

This article really sums up my experince of joint Hypermobility, its written by the fantastic people at the Hypermobility Syndrome Association (HMSA).

Below is a brief quote from the article that neatly sums up what hypermobility is.

However some hypermobile people can injure their joints, and their ligaments, tendons and other ‘soft tissues’ within and around a joint. This is because the joints twist or over extend easily, may partially dislocate (or ‘sublux’), or in a few cases may actually dislocate. These injuries may cause immediate pain and sometimes also lead to longer-term pain.

The majority of people recover from an injury though this may be slower than normal. Some hypermobile people, however, either recover only partly or continue to repeatedly injure various parts of their body. This is one presentation of JHS.

These problems can interfere with daily activities, schooling, work etc. The pain associated with this can become widespread and persistent and might initially be diagnosed as or confused with another condition called Fibromyalgia.

As you may have seen if you follow me on twitter I dislocated my thumb on Friday evening. I did this doing something simple that would cause no problem for most people – tearing off a piece of duct tape!

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What’s Considered a Faux Pas?

Never grab me, its my biggest hate, makes me jump and immediately puts me on the defensive.

diaryofamarriedblindwoman

It is understood that people are just trying to help sometimes. But here is a little insight to what should be avoided when in the company of blind people. First, please don’t grab (us or our canes). Imagine being blind folded and being grabbed by the arm. It’s very uncomfortable. Next, it’s perfectly acceptable to offer assistance. One blind person may need it where another may not. If they decline, don’t take it personally. A lot of us wish to do as much independently as possible. Also, there is no need to shout. While blind and deaf sometimes go together, they don’t in every case. Most people who are “deaf-blind” will inform you if they can’t hear very well. Last, if you plan to offer anything, offer an arm. If they want it, they will take it. If not, verbal direction may be what they’re looking for.

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Laughing at mental illness – good news for Russell Howard

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Russell Howards Good News 3

I really enjoy radio and TV comedy and comedy clubs. As I tweeted a couple of weeks ago:

“I love laughing. And this comedy series with @RussellHoward always ends with an uplifting story.”

My tweet included a link to the BBC Three show Russell Howard’s Good News. This show, now in its eighth series, is written by Howard and is a light hearted upbeat sample of the previous week’s news stories. The show includes lots of humorous video clips and newspaper headlines, a mystery guest with a whimsical skill which Howard samples on stage, and ends with an unashamedly cheesy story. The show’s material is tested in front of an audience on Sunday, filmed on Tuesday then the show airs on Thursday. It’s the channel’s most successful entertainment show ever.

Last Thursday, to warm people up for the new series that started tonight, Howard’s 2011 stage show Right Here…

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Day 2 – The Simple Things in Life *

*Or NOT!

Today I am inspired by chatting to someone who has  only in the last 2 years become visually impaired. Meeting a relative newbie at the start of learning to live life independently with a sever visual impairment has made me think of all the little adaptations and things i do in a strange way without even thinking about it.

Take for example making a cup of coffee and carrying it over to your faviourte spot on the sofa to curl up and watch TOWIE (or whatever the latest TV craze is).  How do you get that boiling water from the kettle into the cup? Let alone carry the cup of hot coffee from the kitchen to the sofa around relatives, friends and animals without ending up wearing it?

The bottom line is you don’t I regularly spill boiling water on my hand when I make a hot drink, it does not scold me because by the time i have said a naughty word and waved my hand in the air the water is at a much cooler temperature. On Teaspoon going from jar to cup I always spill coffee and sugar. Not to mention just the other day I tripped over a shoe at a friend’s house and promptly redecorated her hallway with my cup of tea.

My mum rang me earlier today to tell me she had polished her shoes with fly killer instead of shoe polish, you find a can in the cupboard how do you know which one is which? The reality is if it’s not where YOU ALWAYS leave it then mishaps happen. In the past I have been washing my hair and accidentally used sun cream instead of shampoo which is a horrible experience because of the greasy nature of sun cream but it happens.

Yesterday I realised how lucky I am that I don’t have any food allergies, I was buying cake for a friend who does and it suddenly occurred to me that if I had been on my own I would have had no clue which cake would make her ill and which cake would be safe.

Best before dates… Need I really explain?

Think about walking down to your local corner shop, now imagine that with your eyes closed, does the thought of walking to the shop with your yes shut scare you? Then add into the mix all the things you could encounter on your journey; Pedestrians, cyclists, traffic, road works, pot holes, chewing gum, overhead branches, children, birds, wheel bins, lampposts, postboxes… There where some shocking statistics released a few years ago that 8 out of 10 blind people never leave the house alone due to fear and lack of confidence if you couldn’t see where you were going would you make it to work on time?

This is a topic I have written about before I realise both here (You know your a blind person when…) and on the BBC Ouch Website (How to **** in the woods) but the point still remains, things I do every day are different to that of a sighted person, for example right now writing this very post I am not poking at the keyboard or my computer screen, I like to write with my eyes shut and without and screen reader software so its just me and my fingers dancing across the keyboard. I type at my fastest when I  and not looking or listening to anything else and its something I really enjoy having the time to do on occasion. Of course when it comes to proof reading and editing my writing I do look at the screen but then still miss half my typos anyway! Sorry blogosphere your just going to have to put up with me writing utter rubbish that is not grammatically correct!

 

The Insult of Disability

I’m not about to write a ranting raving blog post to you all about how awful it is to be a disabled person – its alright actually and its normal for me and I would not have it any other way!

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?

Mind and Soul : 16 things not to say

Please take a look at the site I got this from its a real gold mine for Christian friendly mental health information… Not that nay MH info sights are not Christian friendly…ah… You get what I mean and its LATE!

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

Corneal Calamity

Well its been almost 2 weeks now since I saw a corneal specialist at the eye unit, meaning I now have 2 eye constants! For those not in the know the cornea is the clear window at the front of the eye, it plays a role  in shaping the eye and keeping it at the right pressure.

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!