Letter to a Small Island …..where disability is not a dirty word!

We need a real catch up when I’m not struggling to type with a pulled tendon but I’ve ended up writing an epic anyway. So, I’ve put it into my blog for you to read! I know I outlined some of the issues we have in the UK today for you when I wrote to you before but here’s an update on the new (and old) problems we are facing. i only hope that the chill wind of austerity isn’t blowing as cruelly where you are as it does here. If not, then a lot of my friends will nod sagely and say, “See, austerity IS fabricated by the rich.” I don’t know which concepts will be familiar to you and which stories may have filtered through to you but somehow it eases my mind to write to someone who is not biased by that they have already been told.

At the moment I’m I’m trying to write a blog and found a page about disability in the UK. But with a new Conservative government elected on the 8th of May this year that is even more hostile to disabled, sick, elderly and poor or working class people and is running the country solo with plans to make several billions of pounds more cuts to public services budgets and welfare spending when people are already struggling to survive I feel as though I am sending a CQD distress call from the Titanic knowing that no one is coming and that there are too few lifeboats and that that was decided by the management so that more people rich and poor could be packed into an ‘unsinkable’ certainty.

Government and disability wise the saga continues! I made it through the awful Atos Assessments without having to go to be assessed but since our nephew did not and he killed himself from the stress of that on top of his bipolar, it wasn’t an easy thing to face at all. we have evidence gathered from some campaigning research they were just shunting all the people with lifelong conditions to one side because it was too much work to assess us all (with an existing backlog) or possibly because they wouldn’t get re-elected if ‘d be caught out being bullying, cruel and discriminatory towards the very people the press and Govt have been telling the electorate they are cutting benefits in order to HELP. This is ridiculous because tests, appeals and healthcare when people become sicker through stress is costing BILLIONS so the ‘saving to the taxpayer’ is negative. Given this is the sort of Thatcherite shower who STILL don’t know where STANLEY is (still CALL it ‘Port’ Stanley or know who it belongs to, I don’t suppose you’ll be surprised at anything I tell you!

The theory people were told in the beginning the was that cuts and reassessments would help the money go to the right people but as the reassessments cost a fortune and are tendered out to corrupt companies with targets to meet (a whole story in itself) and the DWP also has targets the result is that people can be reassessed almost before they have had their last assessment and the Govt. even stopped allowing most kinds of appeals against a wrong decision or holding appeal cases because 40% of appeals were won because the appeals board could see the person WAS terminally ill or never going to get better. At one stage my GP said that EVERY terminally ill patient he had had been refused benefits and had to appeal. So many people who’d been classed fit for work died after they were assessed as fit for work that unlawful to cut a long story short they stopped even counting the number of deaths of sick people and suicides when it reached 10,600 in the first year. New figures show that an investigation into the few deaths they were prepared to link to the tests shows that most of the deaths were people whose cases were treated like this and you can probably multiply that figure by 5 and then double it but the papers won’t cover it or investigate it and the best they do is wring their hands when another innocent person dies homeless or because their insulin wasn’t cold because they had no fridge because they’d had no money for months.

We now have ‘Food Banks funded by people generous enough to put food into charity bins in the very shops that pay their staff starvation wages but Westminster has banned soup kitchens and tries to fine rough sleepers whilst shelters and support charities have been cut to the bone. 3 food parcels don’t get you very far and some people are so ashamed to be in that situation that they make suicide attempts. People have been taught to believe that Workfare is teaching people a work ethic but all they are doing is getting free staff. The shops and charities themselves though are part of all this and take ‘Workfare’ (unpaid) staff from the Jobcentres who can’t afford to pay their rent or heat their houses. And it’s not just that they are having to work to get the Jobseekers Allowance. The tricks the Jobcentre and the assessment centres use to trap people into situations where their benefits are withdrawn are unbelievable. People are told to come to job search meetings that are cancelled and then have their benefits stopped, they tell staff they have to attend a funeral (it was the man’s father) and are still ‘sanctioned’. They’ve rung people up whilst they were in intensive care units to say they are sanctioned or made people on mental health wards fill in the forms with the nurses helping them.

People who have said they are suicidal are told, “So why aren’t you dead then” and the staff doing the assessments are told to bully, lie and frighten ‘clients’. Often all the medical information is ignored and lies are written on your form. People have died whilst still in the building or whilst waiting for the results. If they do die after all, suddenly the DWP says it made a mistake and the money is given back to bury them with. That’s what happened to my nephew. This happens ALL the time but even if it makes the news or is discussed in Parliament people make negative comments and ministers LAUGH or walk out when such stories are told as if disabled and sick people do not matter. The longest surviving double heart and lung transplant patient in this country died whilst being hounded by them and cases where people in comas have been called for assessment are quite common as are cases where people who have already died are rung by the DWP…. But I think the saddest cases are the ones I meet all the time who used to be fit and healthy and so are ALWAYS assumed to be able to recover and learn how to do a new job whilst blind, or deaf or with heart disease. THEY are treated like total frauds and because of that ANYONE who for example doesn’t look REALLY disabled is assumed to be trying it on. I went for what I thought would be a support meeting when I was filling my forms in and the man was a real bully. He went white as a sheet when he read the letters I was about to submit as evidence. David had to shout at him and we put a complaint in.

Basically anyone who knows NOTHING about your condition in this country now thinks they are a medical expert on whether you ‘deserve’ what they see as ‘their charity’ One government minister even complained that he didn’t get letters from grateful disabled people the way he gets letters from the people he sponsors in African countries! Because they use NHS and private staff to do the assessments Physiotherapists, GPs or consultants are used to thinking that you don’t WANT to work and passing comments about ‘those other people who are scroungers’. I had a physio do it to me and have friends on dialysis say that nurses can say things like, “Of course you’re not like those people with things like depression or ME who are just lazy.” I always tell people that I ALSO have invisible conditions and that my friends with those conditions are the ones that keep getting called frauds because there are hardly any frauds! Yet lots of people believe that their neighbour, sister or cousin is a fraud and we had a local case where a man with MS had his benefits stopped because a neighbour reported him.

The newspaper articles are designed to make people think that the UK benefits system is riddled with fraud when in fact across the WHOLE benefits system including pensions, in work benefits, and child benefit the fraud is 0.7% a figure which INCLUDES Departmental errors! The aim is to make the public suspicious of anyone who claims benefits for any reason so that the whole Social Security system ‘safety net’ and the NHS can be shut down. The NHS ‘overspend’ is blamed on ‘immigrants’ even though foreign nationals can’t BE treated free on the NHS any more. And this is working. You find that while some people will believe that the aim is to cut fraud so that ‘real’ people (like me) get benefits, you are as always just as likely to come across people who assume that EVERYONE is a fraud. We even have TV programmes called “Saints and Scroungers” and “Benefits Street” which are designed to show that ‘most’ people are exaggerating and that only the ‘really’ disabled deserve anything, even though people with severe disabilities are also being hounded and treated like fakes. Though the (left-wing) papers sometimes show a few ‘tragic cases of cancer victims left with nothing’ the focus is always that some are more deserving than others. What is really happening is that sympathy for anyone, even terminally ill people is at an all time low. You have to be dying or LOOK like you are dying and the assessors will still bully people with threats that they will be prosecuted if they claim for benefit for the six months they have left to live and if they outlive the Drs prognosis they are told they can be prosecuted.

Also almost any death can be dismissed as OK because we are moving to wards the old ‘better off dead’ mindset. Many families of disabled people are pushed to put them in care but if they do there are many more cases of death in care than there ought to be. If families don’t agree the ‘Family Courts’ can apply to have people taken into care or to have treatment stopped whatever the religious beliefs or wishes of the person are or were. I don’t know whether you will have heard of the Liverpool Care Pathway which is mostly used on elderly patients to withhold food or drink in cases where it might be assumed that they will die anyway. It was discredited because sometimes people recovered or the duty doctor had decided to put them on the pathway without consulting other staff or family. Some of us are very scared because an “Assisted Dying Bill” is also being put through the house of Lords. The Pro Euthanasia lobby won’t listen to the fears of disabled people that whilst some terminally ill people want the ‘right to die’ WE know from the experience of having our wishes ignored that we might not be given the right to choose to LIVE! If you challenge the view that Euthanasia is safe you are told you are nuts (how balanced) or that ‘the NHS can’t afford to keep people alive.’ My own experience of having been ordered to have an abortion three Christmases ago however taught me that people do not listen to disabled people and do not really see us as human. It is common practice to ‘suggest’ abortion to any parent if a scan isn’t perfect OR if the parent is disabled. It’s supposed to be if their is a risk to the health of the baby or the mother but it is more like eugenics – if you are disabled, or your baby COULD be, you are EXPECTED to get rid of it. It was so totally traumatic for both of us but it is a whole other story that most p[people don’t really understand. David had never seen me being bullied before and it really upset him (the doctor acted as though he did not exist) and then two weeks later his nephew killed himself. Even though we helped people going through the assessments, his mother refused to tell us he had had his benefits taken away, or even tat he was ill. So we had to go to his funeral in the middle of a miscarriage.

David hasn’t yet been able to find a suitable job since I got well enough for him to do so and even some disabled friends get nasty about that. But the few good jobs go to people who’ve BEEN in constant work and people who lose jobs get shunned by family and friends because the public are told that the country is full of ‘scroungers’. Since my own SISTER believes I AM a fraud as does my aunt because I haven’t a ‘proper job’ you can imagine how horrible and scary it can be even leaving the house. You feel anxious and ashamed and we’re really lucky that we live in a quieter place than some people where most people are nice. But even near here we’ve had disabled people killed – just last week a learning disabled man died after 5 ‘friends’ killed him and before that another man died of a brain haemorrhage after he was punched in the face. One man was kicked unconscious then set alight and we’ve had other horrible cases like dead babies found in rubbish bins because their parents are desperate young mothers or one who was abandoned when her mother committed suicide. Pensioners hounded to suicide over rent arrears due to error or ‘The bedroom tax’ which charges council tenants for so called ‘extra’ rooms even though they either can”t find anywhere smaller or are disabled people who need room for a carer to sleep or for equipment.

It is a relief to talk to people who haven’t be brainwashed by living in the UK! Explaining it might even clarify my thoughts. And you can let me know which bits don’t make sense because maybe I can explain it to the idiots who , still don’t listen! Atm, we’ve had melt down in lots of the support groups so we’re felling ruddy depressed and friends all turning on each other isn’t nice. Also family issues…. are complicated as ever as neither my mother nor David’s sister nor MY sister get any easier to live with.

Speak soon and sorry to lump you with an epic.

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3 Responses to Letter to a Small Island …..where disability is not a dirty word!

  1. ingrid says:

    A spot on summary of the horrific state of affairs for the sick, disabled, unemployed and poor in this country today. I can’t bear to read about it or anything political any longer as it increases my suicidal risk (3 weeks since my last o/d) but I did read this, I do still think about and care about you and David, your huge losses and your resilience. Love you loads, keep going xxxx

    • Thanks, only just found how to admin these! Many thanks and so sorry. i quite understand hon. This is me too atm, I’m having to be very careful depression-wise atm. It’s a balancing act between contact keeping me sane and things I might see that will drive me lower. A random thought led to this turning into a post!

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