Latest from Susan...
Am just so excited I could scream but never the less here goes, I have finally secured a chronic Pain debate In the Scottish Parliament on the 29th May at 14.40 until 17.00 this was one of the things I asked for in my Chronic Pain petition http://www.scottish.parliament.uk/GettingInvolved/Petitions/chronicpain. This debate was arranged by the Cabinet Secretary for Health Alex Neil it is also the very first Government debate in the Scottish Parliament about Chronic Pain as there were 2 other debates in 2002 and 2011 which were member's debates.
I would like anyone who suffers from chronic pain, their families and carers or any organisations representing them to attend this debate as I want the Government to see the gallery full there is 219 seats and tickets can be booked through this link please say you want to be in for full debate
http://www.scottish.parliament.uk/visitandlearn/24232.aspx or by phone Visitors Service 0131 348 5200 or freephone 0800 0927600
I will also send out another link a few days before so anyone not able to attend can watch from home therefore ensuring they are included in it.
Please share this blog with everyone you know as I want everyone all over the country to tune in to this debate and work with me in partnership in getting the services for patients that they rightly deserve.
I will also be tweeting throughout the debate with the hashtag #chronicpaindebate pls join me on twitter on 29th let's raise awareness of every condition and the effects it has on peoples lives.
Until the next blog
You can find me on twitter @susanas4321
Today, Monday 15
Wow Petition Campaign is resisting the Government's "War on
Welfare". People from all over the UK are joining protesters from Scotland to
tell the Government that its brutal public spending cuts are immoral and that
Trident is not wanted and not needed. Whilst government spends billions on
preparing for nuclear war it has targeted its most vulnerable citizens with
severe cuts to vital welfare, health, education and pensions.
Susan Archibald* of the WOW Petition
http://wowpetition.com/ and fellow protesters will be taking part in a peaceful
blockade of the Faslane Naval Base which is home to the UK's entire nuclear
weapons system. This will be a mass display of non-violent action to Scrap
The government is slashing funding for vulnerable and disabled people at the
same time it is replacing Trident at a cost of £100 billion. 3.7 million
disabled people will lose £28.3 billion of support by 2018. 600,000 disabled
people will lose their entitlement to disability benefits. 420,000 disabled
households are being hit by the 'bedroom tax'. 700,000 disabled people will lose
Employment and Support Allowance income due to time limiting to 365 days. One
million families will be hit by freezing child benefit and millions more will
suffer from an annual benefits rise of just 1% as food and fuel prices soar.
Some will be disproportionately affected by combinations of cuts to several
essential benefits at once. We want Scotland and the world free of immoral
nuclear weapons and call for Trident to be scrapped and essential human needs
"I have just spent the whole weekend with activists from France, New Zealand, Sweden, Australia, America, Glasgow, Newcastle, Dundee, Aberdeen, Manchester, Yorkshire, Wales, London, It has been a liberating experience listening to stories from so many activists about the years they have spent campaigning against Faslane.
I am really pleased that the Scrap Trident coalition is taking a stance to Defend Disability Rights and I hope other organisation's and groups will join them. The money saved from scrapping Trident could cushion the blow for everyone affected by Welfare Reform. So much work is needed now in local communities as the most vulnerable people and their families are under attack by this Government.
We have to look at every budget and think how the money could be spent better. We could choose to create paid jobs, not Workfare, as every person matters in Scotland and everyone should have the hope of a paid job. Whether able bodied or disabled people, they should not be forced to work for no pay.
Serious changes affecting disability benefits came into play this year to help the Government strip DLA, now called PIP, away from the very people who need it most. So many working families, already living on the edge, will be forced out of work when Universal Credit hits. Many of them might not get enough hours employment, and under the new changes if they do not progress into full time employment they can be forced onto the work programme to work for free. This is unfair.
The Bedroom tax is also a major worry for thousands of ordinary people in Scotland. Many simply do not have the money to pay and will end up evicted as a consequence, leaving thousands of families destitute.
If the government invested money in housing projects, rather than spending £100 billion on Trident, thousands of young people could learn a trade and be paid at the same time. This would also provide more social housing, relieving the problem caused by successive Governments not building houses.
Changes to the laws regarding legal Aid also came in on April 1st. This will have a huge effect on anyone needing legal aid for advocacy regarding housing, education, medical, employment and, of course, wait for it, the First-tier Benefit Tribunal, which removes people's human right to access to justice and a fair hearing.
I spend my whole life working to promote equality, and zero tolerance to discrimination, for people all over the world. I honestly couldnae forgive myself for being responsible for the slaughter of innocent people if the UK's nuclear weapons were ever used. So please, join me to "Scrap Trident NOW!"
Picture here of my young friend Scott
We blocked all gates for well over 3 hours from just before 7am then finally leaving about just after 11am, what a day! A total of 47 people were arrested ranging in age from 19 to 83, among them were Myra Garrett, 80, a community activist from the East End of London, Sylvia Boyes, 69, a Quaker from Yorkshire, Kristin Barrett, 70 a grandmother and foster mother of many children from Blairgowrie, Barbara Dowling, 68, a retired Occupational Therapist and Barbara Maver from Edinburgh, both members of Trident Ploughshares.
Veteran campaigner Caerphilly Labour councillor, Ray Davies, 83, who features in Ken Loach's new film Spirit of '45, and who ahas been arrested many times in protests against nuclear weapons was arrested today after blockading for three hours. 
Many younger people were arrested, including Ryan Morrison of Paisley, a student at Strathclyde University and Duncan Logie a Theology and politics student at Glasgow University and Paddy Durnin a student from Dundde Univerisity and member of Action Palestine Society.
Dominic Lindley, 20, Development Officer with Yorkshire CND who said: "I am taking action to stop the Breach of the Peace committed by the UK by owning and refusing to disarm the weapons of mass destruction. These weapons are both inhumane, illegal and their use can never be justified. In the next few years the UK has an opportunity to join the vast majority of countries in the world by disarming our POINTLESS nuclear weapons and spend the £100 billion wasted on them on vital services for our communities like the NHS, Education and the Welfare State. We cannot work towards a nuclear free world without disarming our own nuclear weapons. We must SCRAP TRIDENT and invest in our local communities."
Sara Moon a Development Officer from Sheffield University said: "Sheffied University Student Union has a firm commitment to the belief that money should not be spent on funding the arms trade and supporting war butinstead be spent on fundamental social goods such as education. It would take a fraction of the cost of the Trident nuclear programme to fund free education for all in the UK. At a time when the worst off in our communities have been stripped of their access to education we have to demand that public money is not wasted on something as unnecessary and devastating as Trident"
Former Netherlands MP and IKV Pax Christi Disarmament campaigner Krista van Velzen, before being arrested, said, "I'm here witnessing the run up to the first time ever a people have the chance to vote on whether they want to live in a nuclear weapons state. It's appalling that the UK spends £3Billion per year on weapons of mass destruction, while refugees in Syria struggle even to have a piece of tarp to make a shelter."
Laurie Ross of Christchurch, representing Nuclear free New Zealand and an Ambassador of the Auckland Peace City came to support the Scrap Trident blockade of Faslane before going on to Edinburgh for a meeting of the international nuclear disarmament campaigning network Abolition 2000.   She said "I am here to achieve the Nuclear weapons convention for the abolition of nuclear weapons starting with Scotland."
The WOW campaign asks "How long will we let the Government fund nuclear war
while saying there is not enough money to help sick and disabled people live a
The cost of funding Trident is draining valuable resources.
Funds for Welfare not Warfare Scrap Trident!
The WOW Petition Campaign demands that the Government complete a Cumulative
Impact Assessment of all the cuts and their effects on all vulnerable groups,
and an immediate end to the flawed Work Capability Assessment, as demanded by
the British Medical Association. There are growing numbers of deaths and
suicides being attributed to the stress and hardship which disabled people are
being subjected because of the welfare reforms.
Please sign and support
You can also find me on twitter @susanas4321
Until the next time Susanas
Git up git up, git oot yer bed
We've a feast to mak
Need tae pit on a spread
So get yersel dressed then
An head tae the glen
Com on noo hurry
Oot yer wee but n ben
Yuv a haggis tae catch
Tae prepare fir yer tea
Wi some tatties n neeps
How braw will it be
The lads al wear ther kilts
The lassies ther tartan shawls
We'll kick up oor heels
In the auld co op halls
A ceilidh band will play
Tae end a brilliant day
Auld jock or jimmy on ther chanter
Laughin n jokin,
A wee bit Scottish banter
A speech fae the host
Aboot that burns man
N we'll end wi a toast
An a braw wee dram
We'll mak oor way hame
Tae oor wee but n ben
N com next year
We'll dae it awe agen
Until the next time Susanas
You will find me on twitter @susanas4321
SOME people look at me but don't speak , yet I am the most sociable person in the world and would go out of my way to speak to anyone but to so many I'm invisible and not someone people want to associate with as they think my disability must obviously have an effect on my brain so that I cannot contribute to conversations. I suppose I am a bit of a yap and could certainly talk the hind legs of a donkey but I have been in so many situations in the last 14 years that have made me feel uncomfortable, hurt, excluded, unwanted and isolated because some people are not comfortable around me.
Is it because I'm a gobby female? Definitely not: it's because of my disability and it's even worse because I use a wheelchair or a scooter. As while I was using my crutches it was bad enough but not as bad as being in a wheelchair or scooter People are really very rude when you use crutches and push past us all the time making me lose my balance and then shout at me to move like it was my fault in the first place. I promised myself years ago when I tried and learned to walk as best as I could that I would never ever go back in a wheelchair but over the last 6 years my condition has deteriorated and I have had falls and damaged my pelvis which has had a huge effect on my physical abilities. The worst being my falling off a train last April in London. I have no option and have to use a wheelchair or scooter now and once again had to make a lot of changes in my life because of it.
So before you jump in and comment please keep reading. You can write me your thoughts in the comment box at the bottom of this article or by sending me an email to email@example.com .In order for me to raise awareness of the effect this has on people I seriously need you to comment as I suspect loads of the people who comment will have faced the same or far worse things than me.
I learned this when I first became disabled 14 years ago. Firstly, one by one my work colleagues stopped calling me then my friends stopped visiting. If I did go out at first in my wheelchair people didnae speak to me - they only spoke to the person who was pushing me. It's like they think we can no longer speak, I just didnae understand why back then but I do now, eh.
I describe disability a bit like death
I describe disability a bit like death and how people can't talk about it so instead of when someone dies in your family some people will say sorry to hear about your mum or your gran, others will cross the street or just plain do anything to avoid the discussion. So that is how I felt when I first became disabled The isolation and exclusion for me personally was so difficult that I became hugely depressed - the worst feeling in the world. If you have suffered from depression or think you need help you can contact Mind here http://www.mindorg.uk
Or if you live in Scotland you can contact Scottish Association for Mental Health http://www.samh.org.uk Even depression is hard for me to explain but a'll try. I felt a bit like a candle where my flame was flickering in and out, I was so terrified of losing the light at the end. This is why in my everyday life I strive for people to say hello to others to just smile at someone every day as it costs nothing to care but has such a huge effect on peoples lives . So many people die of loneliness even at a young age as it explains in this article here http://www.dailymail.co.uk/health/article-481791/Lonely-people-likely-die-young.html#axzz2JlHZPszY
But there are ways to work through it to find other people like yourself and join groups, forums or social media sites. This website explains here http://www.wikihow.com/Deal-With-Loneliness as it's unbelievable to imagine how people can make you feel or have such an effect on other people's lives.
I am not saying it is meant, as I'm quite sure they would not do that if they realised what effect it had on people but this is why this blog is so important to me: 1) For raising awareness so people try and change their ways so they don't make people feel this way and 2) is too support and help all the others who this has happened to. You're not alone and I understand what you are going through just a bit annoyed that I have not came out and said it LOUD enough for All to hear before now eh, but it was something I did intend to do.
I really hope airing my feelings will help others feeling the same way. I have a lot more to tell you. You see, it goes much deeper than this as I also never knew how hard people with disabilities lives were until I became disabled eh. Dinnae get me wrong, I have always spoken to everyone all my life and never ever excluded or ignored anyone so this is why I could not get my head around it, "how can people be so cruel"
I really struggled and it was only through the friendship I made with everyone else who also has a disability that I managed to survive, we ourselves are very unique as peer support is such an amazing thing and we truly build friendships that could not be broken, we also care for and respect each other so much. I just feel that they themselves are my family - and I really mean that - as they have given me the strength and the courage to fight on through all the barriers I have faced to date. It has been my friends that inspired me or made me so determined to battle on to try 'n' make so many changes to help them and, trust me, if you are reading this and know me you too will understand that I am a very determined female who will do anything for my peers.
It's like looking in the mirror
You see all those years ago, I too lost all my confidence, self esteem and had to fight for survival and I seriously mean that. I have become a survivor and push myself forward taking as many knocks as I can for my peers as reflecting on my darker days I see myself at the bleakest times in my life: a frail, helpless female wasting away in her wheelchair, so unmoved by anything and the world around me. I was no longer there as I used to just sit and glare! I was so inside myself I could not think, talk or react to anything. All I felt was pain.
But it was not just the chronic pain that was killing me but the unbearable pain of being unwanted was much harsher. People say they are hungry but am describing a feeling within that was starving me of life, people, basic communication.
God, it's so hard to explain and wee flashes come back to these moments more and more each day as the effects of welfare reform are having on my peers. You see, because of all the bad publicity - people being described as "benefit scroungers", for example, - so many people are being treated very badly Hate crime is rising and I would just look like the Ideal benefit scrounger while I am out and about and have noticed on many occasions how people look at me and react by "whispering" and "pointing". But then in today's society we get so many people for whom it is the norm to be rude and trust me they don't hold back and just say things as they walk past. See, there's another thing: they also think that we are DEAF as well and can't hear their comments but we can, some particularly say it louder so we do hear, eh?
I have the courage to turn the other cheek and carry on with my life but my peers can't take it and we seriously have to get in and work with all police forces as so many neighbourhood disputes are occurring, yet nothing is being done in a lot of cases where the person has a disability.
I suppose I am really lucky as I have worked hard and know so many people but take me out of my circle and put me in a room full of strangers and trust me I'm right back at the beginning all over again. You see for all I have new coping skills it is not me who is the problem it is the people who don't know me who are NOW judging me on first impressions so no one approaches me.
I have always known my life was not going to be easy and dinnae get me wrong I'm the most positive person in the world but even I still crumble inside like when I found out a few months ago when I was invited to attend a business networking event with my friend. When I was on my way to this event she called to say her child had had an accident and would not be able to make it as she had to go to hospital. So I had a think about it. I was already there a bit early though, so I decided to hang with it and go alone; might as well since am just about there, eh?
So I went into the building and looked at the notice board and went to the room where the event was taking place As I went in, it was just an empty hall so I just went on twitter and chatted to friends while I was waiting on the others to arrive. Slowly, one by one, they arrived. (By the way, it was one of the events where there are no seats so makes me stick out like a sore thumb eh?).
It was just an empty hall and as they came in they all just formed wee groups chatting No one asked me to join in but some of them kept glaring at me then talking quite obviously about me. Others also glared over - if looks could kill I would be dead - and this was just the beginning. So me being me, I decided to move my scooter over to four men who were chatting in one corner. So like you do, you listen in until they talk about something you know then you try 'n' join the conversation. That definitely did not work as I got a nasty stare off most of them then one by one they turned their backs and formed a circle the other way. I just sat there kind of mesmerised at first thinking it must be my fault; maybe I should have introduced myself as perhaps they thought I was rude.
So I went back over to the table where I had been in the first place and decided to just have a coffee then give it a few minutes and try again. So I was on twitter again, telling my friends who were quite angry at the way I had been treated and me being me was up for trying again. Well I am very sociable and have never bothered about turning up at events on my own as always can speak to people eh.
So a man came over and put tray of biscuits beside the coffee and was really nice and asked me if I wanted him to dish my coffee out as I was struggling as it was one of those coffee pots you have to be able to hold the cup and push down on the lid. He must have seen me struggling eh? It was really nice of him to help and I thanked him for it. Well I never! If I thought I had been given glares before I was seriously being drawn daggers now. God, it was that bad I really was feeling uncomfortable so chatted again about it, and my friends on twitter were either encouraging me to try and talk to someone else or telling me what to tell them all to do with their event and go home. You see, my friends are so protective like but am a warrior and never give in so I thought I'd brave it and try again This time I picked a group in the middle of the floor - females. Maybe they would receive me better, so I went over and never got the option of joining in as they completely were un-impressed and immediately turned their backs on me.
Well I am afraid that was enough for me so I just started to head back to the table where the coffee was and one woman came over. I was so happy thinking "thank god she was smiling at me". Sso she was coming to talk to me after all eh, because inside I was dying. WRONG! She only came over to ask me if I could please move back a bit as where I had parked my scooter she could not see out the window to watch her car as it had been scratched in the car park once before. So I moved over to the other side of the table and chatted again to my friends on twitter then another man came over and asked me to move for same reason as he was also worried about his car and I was blocking his view. Well I'm sorry but even the strongest person in the world wouldnae be able to take that eh?
so I proceeded to leave but as I got to the door of the room a man followed me and said did the day care centre forget to pick me up? I was just so angry I never answered him and when leaving the building I noticed on the board that there had been a learning disability group in the room before this meeting took place and the caretaker who was nice enough to pour my coffee for me said it was probably because I drunk the coffee as they moan that no one is to drink it until the end of the night after the meeting eh.
I must have looked like the person with the learning disability from the last meeting and had been so bad that I had helped myself to their coffee and had the gullibility to try and speak to them. How shocked they must have been eh, whereas the true story was I had been invited along to the event to speak at it eh as an activist but never informed them as every time I tried to they turned their backs on me. I did not think they deserved to have me as their guest speaker after treating me that way and was even more appalled at them as if they did think I was someone with a learning disability who had not been picked up or had been left. Why not ONE of them had even offered to help beggars belief so I got back in my van and drove home.
I cried the whole night
I cried the whole night, a little for myself but more for my peers as I can pick myself back up. The majority of my peers today have been driven underground and stay in their homes as the fear of coming out and taking part in anything in society is just too much for them. They have been hounded by this government making their moods and depression reach an all time high. Can you even begin to imagine what their lives are like on a day to day basis? God, it's hard as we are being judged on a day-to-day basis by people who don't know the first thing about us but just because we have a disability does not mean we should be condemned to a life of hate, isolation and fear. Last week Scope asked for everyone to tweet with the hashtag of #heardwhilstdisabled. So many dreadful comments were put on this page but I don't think half them were correct as I don't think they were just heard whilst disabled but more like comments that had been directly said to them. You can see these comments here https://twitter.com/search?q=%23heardwhilstdisabled&src=typd then you will finally understand what we face on a day basis.
Even people I work with are far too complex and not even able to meet me for their fears and anxieties are so bad it makes them so ill to either even just come out their own homes and get in ma van for help makes them physically sick. Or we continue to communicate by social media or phone until I can build their trust to get them the support they need. Let's not forget how the people feel with hidden disabilities as no one can see what is wrong with them so they have it extremely hard. The most important bit is our many thanks to our carers and our families as without them we would never have survived and they also struggle seeing what is happening to their loved ones. We should not have to just survive or merely exist. We should be accepted in society for who we are and allowed to be treated with respect and dignity just the same as anyone else.
I work with so many people across society and pride myself in helping others. It does not seem like 14 years ago that I was just like them and promised myself if I could re-educate myself and get a bit better I would fight for everyone else who can't fight for themselves, and trust me there is nothing or no one who can stop me. I have become their voice and count myself so lucky to be able to speak on their behalf. Nevertheless, what kind of a society are we creating or letting this Government and the media create with so many people being played off against each other: black against white, gay against straight, working against non-working, disabled against able, immigrants, refugees and so on. It's just so bad that all us minorities have to unite together as only then will we become the majority and be able to turn things around. There is one way we can all fight together and it is to sign the #WOWpetition http://wowpetition.com help the most vulnerable in society have a voice against the war on welfare by this government.
Please share this story with at least 10 of your friends, Help me make society a better place for all "We have to be the change"
You can also find me on twitter @susanas4321
Ma daughter's getting married
Her wedding day is here
She soon will walk up the aisle
And a ken al shed a tear
Al think about yeh
through the day
And hope all goes to plan
Cos ma wee Bizzy's
Got herself an African man
A wish a wiz there wi yeh
To say awe the things ad say
Tae ma darling daughter
On her wedding day
But Laura's there fir yeh
And a ken she'll dae yeh proud
Watch her wi the drink though hen
As yeh ken she gets quite loud
A love yeh both tae bits yeh ken
Nae mither prouder than me
Just doesnae seem that long ago
Yeh were sitting on ma knee
Cherish his culture
And grasp it with open arms
Woo him and woe him
With all yer Scottish Charms
A wish yeh awe the best though hen
And a ken yer face will beem
When yeh marry yer African man
You'll come hame ma African Queen
IT WAS a tough week for me this one as this was the week when thoughts I had locked away had to be reflected on to benefit my peers who suffer from chronic pain as I was giving evidence in the Scottish Parliament on my chronic pain petition see here http://www.scottish.parliament.uk/GettingInvolved/Petitions/chronicpain
I've been working with the cross-party group since last April to draft this to get what people with chronic pain need, as for far too many years there has not been enough information, awareness and even treatment to help the millions of people in the UK who suffer from this. My friend Dorothy Grace Elder who is a former MSP and Journalist wrote this article http://thinkscotland.org/thinkculture/articles.html?read_full=11809 and was also there with me to give evidence and I am really glad she was as the bits I didnae say, she did, and vice versa. We were a great duo and held no prisoners .
I have to say though, from the weekend I had not been keeping as well as normal but I realise now it was the build up till Tuesday as when I got in there to give my evidence I got very emotional and upset but did manage to hold it together. The only thing that threw me was MSP Chris Brodie's question about people claiming to have chronic pain then it actually turning out to be psychosomatic. Arghhh! Did I hear that right? Seriously, had he even listened to what I was saying about how I was treated in the first place when I was referred to a hospital and the doctor treated me so badly?
At this point his whole mannerism changed
Oh dinnae get me wrong - he was so nice in the first place, then he popped into the next adjoining room and spoke to the head anaesthetist from the hospital where my operation had taken place, but the nurse realised that I could hear what was being said and shut the door. About 5 minutes later the doctor came back in from the main door with another doctor with him. At this point his whole mannerism changed: you see that morning before I went to hospital my own doctor and my health visitor had came to my house and bandaged my knees and the front of my right foot, cut the back of my shoe and strapped it all up as I had not been able to wear shoes and had never been out since my operation. They then bandaged the front bit of my shoe onto my foot to hold it on as although I could not feel it was blistered and did not have much skin on it as the friction of my carpets had took the skin from it.
So the doctor at the hospital had undone the bandages on my knees and front of my feet and was extremely nice to me. Before he went in the room, he asked me what was wrong and I told him I had gone into the hospital for a small surgical procedure but something went wrong and I was left with this pain in the heel of my feet that feels like someone has just burned you with a red hot poker or you have got burned from a pot while cooking.
However, the pain was there 24/7 and did not go away and the wind on your clothes or water made it 10 times worse and although it was still a nightmare, it eventually settled a little and that I did not know until after my operation that when I tried to get out my bed I just fell to the floor as I did not know that my right leg would not work.
So of course while I was telling him all this I would be upset would you not: one day you are fit and active and the next day you can hardly do anything? What a life back then, even the morning after my operation when the nurses tried to help me in the shower I did not know then the water would make it worse but cried while telling him as I had never told anyone else except my own doctor and health visitor, eh.
I had never been so humiliated in my life
So like I said above, when he came back into the room, my clothes were over the other side and he said to me I was to put them back on myself and stood and watched then said he was going to do two things for me: 1) was to refer me to a psychiatrist as I obviously needed one as who else would scrape their own legs and cut up their shoes to look like that - but I hadnae: my own doctor and health visitor had eh, and 2) he was going to refer me to the pain clinic. I never knew what that was then eh, but I do know that I had never been so humiliated in my life and would never have believed any doctor would have treated me like that, but he did eh?
When I got dressed, and on the very pair of crutches that the OT had brought me that morning, I left the hospital and went home so gutted that he could treat me like that and have told many a person never to do things without anyone else. So one hospital caused it and doctor after another was trying to make out I was mad to cover it up eh, and I did go on to the pain clinic where I finally met a doctor that understood and said I was not mad and gave me a name for my condition: RSD/CRPS called by 2 names now but what an amazing man!
I have undergone a few scary day surgery procedures. One was a bear block: they cut off the circulation in your leg and put an anaesthetic on the bottom of your feet but it's very risky because if anything happens to the air machine, that's it! The anaesthetic would just come right up and round yer heart. Ma husband signed off on this the first time for me but refused to sign it a second so had to get ma mum to do it. You have to realise I was so desperate in the beginning I would have tried anything and even asked if he could cut off my leg but he said no, eh.
The next thing I tried was to have a small section cut out of my back at the bottom of my spine so phenol could be put in the cavity but I never realised until I got there that I would not be able to get any pain relief until after it had been done as he needed me to be awake but also to feel as he inserted it into my cavity. All I had was a towel to bite onto and I remember him saying that women had a far higher pain tolerance than men! At that point, I had tried drugs from here, Calcitonin nasal sprays from Sweden - you name it I tried it. The doctor had said that some time the condition spreads but as I went home later that night in so much pain and as the next day came, I thought it was fast in spreading as I had a problem with the top of my left leg now as well and although the pain or burning was similar it was slightly different. When I tried to get hold of him to ask if my condition was spreading we had a chat and he said when he came back from Sweden he would look at the scans/xrays and see if anything showed up.
Hardest Hit Disability Protest
When we met up he told me that fennel must have slipped into another cavity causing this problem in my other leg so I thought I was to get better and ended up a bit worse. I decided at that point and time enough was enough because I couldnae afford to get any worse and basically had to learn to live and manage my own condition over the last 13 years. Fortunately, I have had so much help and support over the years from my amazing husband and family and take my hat off to all the carers out there looking after their friends and families. I am so proud of you because it is so hard to try and understand us as our conditions also can cause depression also and all those years ago between trying to challenge my employers for to stay employed, I felt like a failure as a mother as I had 3 older children and 1 baby that I was scared that i would drop or fall asleep and not hear him cry that a decision had to be made that my baby would go to the childminder and my husband dropped him off and picked him up. But you also have to live with the fact your that bad that you cannae even look after yer baby. There was so much running through my head at this point and the pain was immense because even when you pushed against the wall something has to snap and that something was me.
I was a very confident person before this happened to me but throughout the process I lost my friends from work, lost all other friends that just disappeared around me and I even fell out with my mum as she packed a bag and came up and said she was going to help but I had to send her away not because I didnae love her or want her help, but because I myself had to go it alone and do it all for myself. I never meant to hurt my mother and trust me I was hurting too.
I sat with a cocktail of drugs and a glass of water
Everything got on top of me that much that one night when everyone had went to bed I sat with a cocktail of drugs and a glass of water and started to take them. Then my baby cried. Oh my God what had I done eh? A couldnae pull meself across the floor fast enough to drink salt water which did make me very sick but at least I was a never once considered how my family would have felt if I wasnae there for them growing up and from that moment in my life I changed.
You see a had spent months listening to ma doctor saying it was nerve damage and it might get better so a woke up thinking I was going to get better every day but a didn't. I had experienced people no longer talk to you when your in a wheelchair - it's like were invisible and they only speak to the people who are with you. I say it's a bit like death as people don't know what to say when people die - " sorry to hear about yer gran" - but some can't so they just cross the road and walk away and the more they do, the more it becomes that they just won't speak to you again as they can't face it.
I took this extremely hard as I am such a sociable person and when no one talks to you it has a huge effect on yer life. So after giving my evidence which can be read here http://www.scottish.parliament.uk/parliamentarybusiness/28862.aspx?r=7663&mode=pdf ha got a call from the Scottish Parliament. It was so funny asking if they could or did I want them to change my evidence from couldnae, didnae, fae and tae to could not did not and from and to but a said Naw am proud of being Scottish and that's how a talk so please leave it in wer no awe meant tae be the same onywy eh?
I ended up on STV news http://news.stv.tv/politics/208954-chronic-pain-sufferers-tell-msps-that-services-are-inadequate/
then Scotland tonight and on the BBC' website http://www.bbc.co.uk/news/uk-scotland-scotland-politics-20946437
Scottish Herald http://www.heraldscotland.com/politics/political-news/committee-hears-of-silent-suffering-of-thousands-who-live-with-chronic-pain.19860376 and this is only the beginning as I also have the support of Anne McKechin MP who will raise debates and questions in Parliament and Baron George Foulkes who is a peer and will also raise debates and questions in The House of Lords.
I know there will be a story in the Sunday Post today and the lovely Lesley Riddoch is also writing her column on it also have fewsusan-archibald-big stories going in fife papers and Hollyrood magazine will also cover it and I say the more the merrier eh as we have to raise so much awareness of this to get everyone the support they need.
My biggest concern to date is Welfare Reform as there are millions of people all over the country that are going to have their benefits taken off them and declared fit for work. Many will be stripped of their DLA in next few months and the doctors that think they are over stretched right now with a high rise of patients needing medical reports will not be able to cope when the new PIP starts assessing as every single person on DLA will be re assessed putting even more strain on GP's and medical services particularly those supporting mental health.
If you would like to reply to this article please email firstname.lastname@example.org or you can find me on twitter @susanas4321
For everyone who didn't know, I have been working on a Chronic Pain petition for last few months to get better services and resources for people in Scotland, this took up a huge chunk of my time but I was not alone in doing it and although I submitted it, It was on behalf of the cross party group on Chronic Pain in the Scottish Parliament of which I am a member of, so if you were all getting a wee bit fed up with me asking people to sign sorry but you have no ideas how many millions of people this petition could actually help.
You can read more about the petition here http://www.scottish.parliament.uk/GettingInvolved/Petitions/chronicpain
Anyway my petition closed on 10th of January and I handed it in to the petition Convenor David Stewart and Jackie Baillie MSP who is currently Shadow Cabinet Secretary for Health, Wellbeing and Cities Strategy and also sits on the cross party group on Chronic Pain I have done a lot of work with Jackie in the past and have come to know and respect her. Here is a picture of me handing over my petition http://webmail1.mail.aol.com/37267-111/aol-6/en-gb/mail/get-attachment.aspx?uid=29573401&folder=OldMail&partId=1&saveAs=IMG_0366.JPG
I have also gained support from Anne McKechin MP and George Foulkes Baron Foulkes of Cumnock who is a life peer and member of House of Lords; they will both put forward debates and questions about Chronic Pain services and resources in both the Parliament and the House of Lords.
I myself will be giving evidence in the Scottish Parliament tomorrow 8th of January at 10am which you will be able to watch live from the Scottish Parliaments web link here http://www.scottish.parliament.uk/newsandmediacentre/30876.aspx
The reason I have taken this petition forward is that I myself suffer from Chronic Pain as I have Arthritis in both my hips and I also have a long term condition called RSD/CRPS this petition although starting out Scottish could potentially help over 7 million people in the UK who currently suffer from Chronic Pain.
I was going to write a second part to my chronic pain article about how and why suffering from chronic pain is very difficult but will instead allow everyone else to tune in to the Scottish Parliament to hear live my own personal struggles with my condition and how it affected me and how it still affects me to date, although sharing my own personal story will be difficult, I have to do this to raise awareness to help my peers, their families and carers get the services and resources they need to be able to move on with their lives. So please watch as so many Pain consultants, specialists and patients from all over the world will be watching.
Also ahead of my evidence tomorrow read this article in Daily Mail page 2 Health Secretary Alex Neil to question HIS on pain management report see link
Great to know that Alex Neil will look into this as I have a lot of respect for him, worked with him before on Homes for Life when I was Vice Convener with Inclusion Scotland, Ha and this is before I even give evidence tomorrow, I think it's going to be a great week.
Until the next time Susanas
You can also add me on twitter @susanas4321
DWP will have an announcement today on International Disabled Peoples Day on how they are now going to "Improve disabled peoples chances of getting work by mandatory employment" sounds good eh well let me tell you it's not. I mean can you just imagine having a mental health problem s where you suffer from bipolar and borderline personality disorder, which in fact means that the majority of days you can't go out of the house or even talk to people as your stress levels are through the roof you can read more about bipolar here http://www.bipolaruk.org.uk/
then imagine also having borderline personality disorder as well, this condition can mean feeling confident one day then feeling despair another, difficulty in maintaining relationship's, risk of or do things without thinking of consequences, your harm or think about harming yourself the list goes on for more information on this condition see the link below http://www.mind.org.uk/help/diagnoses_and_conditions/borderline_personality_disorder#whatisborderline but along with this condition people can also suffer from anxiety, depression eating disorders or substance misuse.
So how would someone with the above conditions cope with being forced into mandatory work, what about if it was your granny age 63 with a disability but because of the extension of working age she could be forced to work, now what is her disability and how will it affect her, people with heart conditions, MS, ME, Fibromyalgia, CANCER, Leukaemia, the list is endless, so many still undergoing chemo and other treatments, there have been no consideration of this just people in glass houses making decisions on people's lives they know nothing about and what about the employers who have signed up to "workfare" how will they look at supporting someone like this.
Will the people being put into a mandatory workplace be entitled to claim Access to Work? This is a government initiative to help people with disabilities by allowing for money for accessible taxis, a support worker or driver to help, the minister for Disabled people Esther McVey explains here on a written ministerial statement issued on 19th of November http://www.parliament.uk/documents/commons-vote-office/November_2012/19-11-12/9-DWP-AccesstoWork.pdf
As you will notice one of her quotes specifically states that "I would like to emphasise that these changes are aimed at making Access to Work more responsive and easier to use, especially for small businesses. Under the Equality Act, employers are under a duty to make reasonable adjustments for disabled people." "Well done" and the reasonable adjustments that she is talking about is what was introduced by my court case Archibald v Fife Council in The House of Lords in 2004 after a five and a half year battle with my employer you can read more about it here http://www.publications.parliament.uk/pa/ld200304/ldjudgmt/jd040701/arch-1.htm
And let me just say, I never went through five and a half years of hell losing an Appeal, Tribunal, Court of session before winning my case in The House of Lords so this or any other government can use my outcome to penalise the very people it was set up to support as if they do not provide Access to Work for their new policies for mandatory work then they themselves will be breaching the Equality Act 2010 http://www.legislation.gov.uk/ukpga/2010/15/contents so the government will be bound by the duty of the Equality Act on implementation.
I also have to raise the fact that on implementation of mandatory employment for people with disabilities today this actually makes the government breach article 27/2 of the Un Convention of the Rights of Persons with Disabilities which the last government signed up to in 2007
Article 27 - Work and employment
1. States Parties recognize the right of persons with disabilities to work, on an equal basis with others; this includes the right to the opportunity to gain a living by work freely chosen or accepted in a labour market and work environment that is open, inclusive and accessible to persons with disabilities. States Parties shall safeguard and promote the realization of the right to work, including for those who acquire a disability during the course of employment, by taking appropriate steps, including through legislation, to, inter alia:
2. States Parties shall ensure that persons with disabilities are not held in slavery or in servitude, and are protected, on an equal basis with others, from forced or compulsory labour. http://www.un.org/disabilities/convention/conventionfull.shtml
Now am quite sure if we raise enough awareness of what the government are doing that other countries will question our government on the Illegalities they will be breaching.
This also has to be said of EVERY employer that is involved in the process as they will also be duty bound by the Equality Act 2010 and have to realise that they can't discriminate against people with disabilities and from the minute disabled people are introduced to "workfare" they become entitled to specific rights that have been built up over the years to protect disabled workers from discrimination.
I am the first person to help people with disabilities to find and maintain work but trust me I will NOT sit back and allow this or any other government to breach their rights and neither should anyone else, so I am now calling upon the EHRC to step up and hold this government to account as this has to be redressed ASAP and if it is not We have to unite and gather outside every single business that sign up for it, so let me just send a STERN message to every business or CHARITY out there who are already exploiting people through the scheme of "workfare" which takes away the very chances of our young people to gain and remain in paid employment, already being forced to work or have their benefits removed, not one bit of consideration or incentive for the young person to gain paid employment and all the businesses like A4e creaming of the profits yet barely getting any into paid work.
Now I do believe that a bit work experience is a good thing as it can be very difficult for young people in the first place to get a job as the employers will not give them a chance if they have no experience but the whole point there is no time limit on this merely exploits the person and affords them no opportunity or hope of paid employment and let me not forget about the businesses and bad employers that are also creaming of free staff and slowing reducing the hours of the paid staff in their employment. We should be enhancing opportunities and the visions of young people not putting them into a situation where there is no hope of a future of paid work so I hope we can all unite around the country and challenge this harder than ever as if we sit back and let this next stage be implemented we are just as bad as the government that are doing it, disabled or able we should not be bearing the brunt of these cuts and have to unite and stand together use any source we can and stand outside every organisation, business and Charity that dare to implement it.
We have seen so many over the last 2 years dying within days of being assessed as fit for work we had Colin Traynor 29, http://www.huffingtonpost.co.uk/2012/09/26/atos-disability-benefits-colin-traynor-epilepsy-_n_1917042.html who suffered from epilepsy but was found fit for work his parents still blame his death on being stripped of his benefits and the stress the assessments caused, we had Steven Hill who was found fit for work despite being diagnosed with heart failure and after winning an appeal he was once again passed as fit for work and died 39 days later of a heart attack while waiting for surgery http://old.24dash.com/news/housing/2012-07-30-Man-died-39-days-after-being-declared-fit-for-work-by-Government-assessors Paul Turner 52 died from a serious heart condition weeks after loosing his benefits and being declared fit for work http://www.birminghammail.co.uk/news/local-news/birmingham-dad-dies-of-heart-condition-187961 now Paul had also been medically discharged from his previous employment but no he was still put through the process people have no ideas how much stress not just the person but all their family go through throughout the process. I could go on and on but to date there have been over 1100 people dying since last year read guardian article surrounding the anger of families of the people who died at the hands of decisions that Atos made and who were particularly upset that the company was allowed to sponsor the Olympics http://www.guardian.co.uk/society/2012/aug/28/atos-3bn-government-contracts-paralympics I think I have said enough so the rest is up to all of us to STOP any more from dying we have to challenge harder than ever to fight for our peers, their carer's and their families who are suffering desperately at the hands of this government.
We never caused this the bankers and the Tax dodgers caused the mess we have today and we sit with a government of rich cats who make themselves richer and penalise the most vulnerable in our society well NO more.
It is time now for more direct action but we need more to help us as so many who are sick and disabled can't take to the streets to fight so I call upon their carer's, their family and friends to join us in this fight for equality I ask for the support for every charity that works for disabled people every disabled peoples organisation to stop there squabbling and stand united with me in the fight to STOP this and work with me to set up protests, demos like we have never seen before to support our peers against the nightmares this will cause.
We have to be the change, we are no longer the minority the government are the minority as if all the people in the UK take to the streets and support us they will have to listen so get up get ready get on the phones let start making our voices heard as together we have a stronger voice and to the streets we have to go. We need the unions support as if they take the money from the unemployed they have to support them so I call upon every union to help and back me in the fight to stop this now. I need support from all parties who are against what the government are doing we need you NOW not next week or next year you are the opposition so join us in our fight for fairness. You can contact me here email@example.com please, please, please act NOW
Until the next time Susanas
You can also contact me through twitter @susanas4321
On Saturday, I attended the Radical Independence Conference in Glasgow now when I was first approached to speak at this I had to be clear about what my involvement would be as I represent the most vulnerable people in Scotland and although I have not made my mind up as such I would only be going to join in and work with the organisers and the people who came to make sure all future events would be accessible and Inclusive to people with disabilities as in order for me to help my peers make their own mind up, I have to be part of it to make sure they get enough information so they can make their own informed choice. I remember thinking me radical but I suppose I am will I tell them about the night I stayed in a tent with Rose Gentle on the street outside Downing Street, or maybe al tell them about the nights I spent at St Pauls in London with my friends from Occupy I never write a speech am a fly by the seat of yer pants gal and trust me I can speak for Scotland I just hope they realise what they are in for , the main thing is I can be me and have not been told what to talk about. Yehaaaa as so many only want me to talk about my own struggles and fight with my employers but trust me I am so much more than my court case that was just a small chapter in my life.
So I stayed in Kirkintilloch the night before so I would not have far to travel in the morning, as soon as the conference started you could feel the passion in everyone's voices about what they wanted we heard from Dennis Canavan he was my MP by the way as am a bairn through and through and only moved to Fife 17yrs ago, he spoke about how he was not a nationalist but he was an Internationalist and that had to be the key for the YES campaign, Jean Urquhart MSP reminded everyone that today's event would never have been possible without SNP and more importantly Alex Salmond.
Patrick Harvie MSP spoke about renewables being in the hands of multinational corporations and how "The opportunity to transform our energy economy is the opportunity to transform the ownership of it", Cat Boyd reminded people that it was not a fight between the saltire or union jack but more about what king of society we wanted, Nathan Sparling gave a great speech on social justice, Peter Mc Coll said Lets take the power and build a better future "We are the Power" and Isobel Lindsay spoke of a country free from weapons of mass destruction and me I spoke about what the government was doing to people with disabilities.
There were so many inspirational people all under one roof feeding of everyone's motivation, positivity, it was electric, and you seriously had to be there to experience it. I was extremely impressed with the hard work that had gone on behind the scenes to make this all possible and would like to tell all my young friends who took part in any of it that I am so PROUD of you all as this was superbly managed and organised write down to amazing time keeping by all chairs of the day, it does ma heid in when a hear people saying young people cannae do this or that a mean whit do the ken eh. If we do not enable empower and include them they will never get the opportunity to try but trust me they are most certainly well motivated and capable far beyond their years and will all go far in life. We heard from speakers from France, Palestine, Canada, and Greece talking about how what was important to them and how austerity measures thrust on them by their government were making them feel and how we should fight for Independence as some of them have not had or lost the opportunity in their countries.
You see we all have the same thing in common we are uniting as people from different walks of life but caught in the severest austerity measures I have ever seen yes people say it's like the 80's when Margaret Thatcher was Prime minister but I was in my teens then and did not really know anything about politics way back then but grew up in a poor household the same as the rest god they were the days eh we had nothing except each other and I have kind of lived with these values and never been materialistic as a person boy oh boy am I not glad or how would I have survived half the things that have happened to me in my life, you see like many others I am a survivor and it doesnae matter what is flung at me or what happens I find the strength to pick myself up and move on remembering there are so many others going through worse times than I have ever had. We heard from Women in Independence about what fuel poverty was doing to people and how we had to fight to get every child in Scotland free school meals in order to remove the stigma of the cue for the voucher.
In Aamer Anwars workshop about Asylum seekers I found it very interesting to hear that this group of people were being labelled and stigmatised just like us disabled people by yet again the Daily Mail no surprise there then eh because along with other papers they have caused and added to much of the stress my peers face on a daily basis because of the way they put their stories out it's like here in Scotland there are millions of Asylum seekers well there is NOT there is just over 2000 in the full of Scotland which causes the people of Scotland to react and they do as this causes so much hate between people who think they are being treated a bit better than them remember all the stories in the past about they come over here and get houses quicker than anyone else there here for our benefits, am quite sure you would have all heard this at one point or another well watch this and weep my friends http://www.scottishrefugeecouncil.org.uk/news_and_events/latest_videos/1841_destitution_full-length_-_7_minutes as this video shows very clearly how people who ran from fear in their own country and nearly died to get here are stuck in limbo with very little support.
I recently met one of these young men and told him I would help but I am still waiting 3 weeks later on the Refugee Council getting back to me, I actually had arranged to meet him at dinner time at the conference but he never showed, I seem to remember him saying he had something else to go to in the morning and would catch up with me after launch not to worry I have sent him a message and will once again contact the Refugee Council. I am such an emotional person and these stories make me be embarrassed to be part of something that has not been sorted how can we allow this to happen like Aamer said in his opening speech the last Coalition and a Labour Government caused this and all he wants to see is it fixed and for them to tear down Dungavel and I could not agree more and it also makes you realise just how better off we are at least we have our homes, I heard in another workshop Civic Scotland about groups in different areas being controlled by councillors as they sit on all the committees and make the decisions, personally its becoming a nanny state being spoon fed by the worst government that came into power, I heard from a young woman in Orkney whose life has changed and been affected so much that when she took her lambs to market she made a profit of only £250 for a whole years work , throughout the day I met people that said they enjoyed my speech and had never been to anything like this before but would definitely be going to more YES I said more in the whole room of 900 people I knew about 10 of them and it was such a gripping life changing experience to hear from other just ordinary people like myself that want things to change for the benefit of the people they live with their visions of what Independence would look like and trust me it was not about haggis and Irn bru or the satire although many feel passionate like myself about being Scottish It was beyond anything even more than you could ever imagine, but through everyone's story you could see and feel the life they want and the only way to understand it is to get involved yourself.
You have nothing to lose you don't have to vote until 2014 but how can you say it's not what you want if you don't know what it is and then there's the other side of it if you wait and do nothing and everyone votes yes anyway you will feel like you have missed out on your opportunity so if you would now like to find out more click on this link and http://indyconference.wordpress.com/2012/04/24/opening-statement/ "be the change"
This company was paid a handsome sum of money to carry out the Work Capability Assessments (WCA) by Labour in 2008. A pilot scheme was set up (after an impact assessment ) and carried out and a review showed serious flaws which Labour were in the process of addressing when they lost office. The Condem Vilification of the Sick and Disabled went into full swing like a drunk in charge of a vehicle under the supervision of Ian Duncan Smith (IDS) . A car crash was about to ensue. The WCA was changed by IDS to the cruel ,biased test we know now.The Atos contract was changed and regulations are being changed consistently to ensure his introduced targets are carried out as exposed by Dr Steven Bick,and Joyce Drummond the so-called 'Atos Whistleblower'. So the disability community have always thought Atos is their enemy ,when the reality is that enemy is DWP and the Government. They blame Labour for introducing this, which they did,but no way was it as cruel as it is now it was in fact fairer. Were the deaths so high under Labour ..no they were not!
I was lucky to meet with Shadow Minister last week who told a delegation of campaigners (inc myself) what I personally had suspected for some time, Atos are the governments scapegoats for failure, rather than the Government/DWP taking responsibility for an assessment process which was already flawed, being made worse by someone at the helm who threw caution to the wind, ignored the need for an impact assessment and by any means necessary was going to remove the vital support that people needed and who change regulations like they change their underwear. Atos Dr's ,Nurses etc are not able to use the skills they trained years for,but are now Disability Analysts. The welfare of the Sick and Disabled do not come into it, if you can work one day a week then this is what they will say,this process IS NOT A MEDICAL that many believe it is in fact a programme to work regardless of levels ability to do so,where it is possible. I know many will be outraged by these comments but that is the stark truth,I'm not going to dress it up or give you a sticky plaster for it. It is now costing more in appeals than to implement the test itself, a 9 month wait on DLA alone for appeals.
Atos are no angels they are banned in 15 countries for mismanagement so they are not off the hook entirely and are culpable in the suffering of our community but it seems what they took on, in many places around the globe were factors that lead to their failures also. The Sick and Disabled know it is fair to have assessments to make sure the genuine get the help they deserve, and work where they can,but this brutal regime will only get worse with the coming changes and more cuts next year with the introduction of Universal Credit,Bedroom Tax, PIP.
Now is the time to start laying the blame where it truly lies firmly and squarely on the doorstep of our present government,and realise the fact that unless we get behind Labour the only credible alternative we will be socially cleansed out of existence. I can hear you all screaming 'what Labour are you kidding me', actually no I am not,while they made an attempt to make sure disability was taken into account and their original idea was flawed they are not to blame for the last two years destruction,we have suffered under this bunch., or for the harsh changes to the WCA or the constant changes to Atos contract and the hidden targets to get 7 out of 8 off benefits.
On reflection I can honestly say hand on heart that Atos are not the real enemy like any business they are fulfilling a contract what is being asked of them and struggling to do so because the staffing levels are not up to scratch to deal with the volumes the Government/DWP are pressuring then to achieve which is why the whole thing is a catastrophe.
I like many others blamed Labour for introducing it, which is unfair of me,it amazing when you get that lightbulb moment and you open your eyes and realise that Atos also are scapegoats and the Real Culprits are laughing all the way to the bank as they asset strip our welfare system to keep the banks and themselves afloat at our expense. I asked why the deafening silence from Labour, the reality is they do not have majority on committees, the Tories and Lib Dem's do, hence the lack of perceived progress from Labour, who are fighting our corner in the background with Human Rights Abuses being lodged in EHRC.
I ask everyone to rise up against this let us get this lot out of office ,LETS KICK SOME BUTT!
You can find Gail Ward on Facebook or twitter @Blueannoyed