Thursday, July 11

Not even human; Disabled people are no more than names. It has to stop.

Trigger warning: Talk of severe disability, mental health, the effects of WCAs, self-harm, suicide. This includes in the comments section.

The assessments the disabled and mentally ill are being put through (Work Capability Assessments or WCAs) can be incredibly harrowing. If you have a severe mental health condition the impact of an assessment can turn your life upside down for an incredibly long period of time. The same is true for those with severe physical health problems. A trip out of the house can leave an individual stuck in bed for months, for some even getting out of bed is a challenge - I know this from personal experience, as I've been there and I still am from time to time, disappointingly wasting away my days stuck in the corner of a sofa, unable to do much for myself.


For some people (myself included) even the thought of leaving the house is a challenge. I know some that, if they actually did walk out the door, it would be considered the achievement of the entire year, yet they're being forced to do so, to travel away from home, from their comfort zone, and interact with strangers. 


The idea of going to the GP for an appointment, a mere mile away, is enough to induce strings of panic attacks for me, and that's before I've even got my splints and shoes on to get out of the door. And these are on the days I can  get my shoes and splints on by myself, others it's so difficult I leave without, being wheeled around in my chair by my husband.


The preparation to leave the house is an ordeal, the thought process is a mind maze of emotion and wondering how you'll manage when you get outside, what if someone speaks to you? What if there's no drop curbs, or no close parking spaces? What if you face a confrontation over your situation when you pull into the disabled bay? Such confrontations are on the rise, and I have been faced with some lately, despite only having been out of the house a handful of times since last year.


With the WCAs, not only do you have to go through the routine of panic attacks, fear, physical strain of getting ready, physical strain of travelling, you're then taken to a place which may or may not have disabled access and picked apart. For ESA/DLA/PIP you are asked some soul-crushingly probing questions on the forms about some incredibly intimate or embarrassing parts of your life. How often are you incontinent? Can you wash yourself? Can you cut up your own food? Use the toilet without help? How is your mental health?


How would you feel if you had to tell strangers how often you want to kill yourself, how often you piss or shit yourself, how often you have to be picked up from the toilet or need someone to wash your hair for your as you can't hold your arms up? Excuse my crudeness, but for some of us this is the reality, and it's one we're not allowed to keep to ourselves.



You have to be open and honest when answering these questions, and for someone whose health isn't exactly the best, it's a horrific experience. Each time my forms come through there's an inevitable breakdown. The knives and medication, along with anything else harmful, is locked away. I have to be watched when I shave my legs or cut up food during cooking. I, like so many others, muddle through day-to-day, trying not to think about how severe my problems are. Filling in these forms shatters the illusion that I've created that what I'm living is a normal existence, that my pitiful daily routines aren't that bad. Oh how wrong I am, and every now and then these forms are there to remind me of how wrong, how little hope there is.

When you've submitted your forms, dissected your life on paper for a complete stranger to read, you may then have to go through the above ordeal of leaving your home, travelling to a place you don't know, putting your health (mental and physical) at risk and going through hell. As with being dissected on paper, you're then questioned by someone from a private company [Atos] who will do the same again. Looking at your forms and trying to pick out inconsistencies with what you say, looking for signs that they could write down to suggest that you're capable of working.

Do you have a toddler? Well if you can manage a child of that age, you must be able to work. Do you have a pet? Did you smile when asked about it? Well you can't be depressed then, pull your bootstraps up! - These are actual examples of things a former Atos assessor was told to look out for. As far as they're concerned, if you can push a button a few times you're capable of work. Forget agoraphobia, social anxiety, depression, days spent in bed screaming with agony.. You made it to your assessment, you smiled once, and you can push a button.

Atos are consistently coming under fire for their practices, making enormous errors when assessing claimants and often ignoring all medical evidence that's been provided.

This is just the beginning, the Atos assessments are only a part of the farce of the benefit reforms and how they're being handled. Disability related social security was said to be protected in the budget, despite having been subjected to a 1% cut. Disabled people are being faced with a 'tax' on their spare bedrooms. Rooms which are actually being used by carers, disabled people's partners, to store necessary medical equipment for the resident. Contrary to the belief of many, living on social security is an awful experience - you have to count every penny and there's a panic every time a bill comes through. Disability involves many extra costs, and despite disability benefits being slightly more than others, it's because the costs of living are higher.

There are so many other things which disabled people rely on which are being drastically cut, leaving many people hundreds, if not thousands, worse off. Some are being left with nothing, being forced onto Job Seeker's Allowance and forced into work that they cannot actually do, and in a time where jobs aren't available for even the most physically and mentally able and qualified. People are being forced into poverty and others are being forced into situations where ending their own lives seems like the best option for them.

For months now, disability activists (or 'extremists' as Paul Maynard MP calls us) have been fighting to get a cumulative impact assessment. This would assess how all of the social security reforms will impact those who rely on them, across the board. From those losing out on the switch from DLA to PIP, people affected by the 'bedroom tax', people affected by any range of the cuts that have been taking place and give an indication of just how hard disabled people are being hit.

At last, on the 10th of July, the House of Commons held a debate on whether or not a cumulative impact assessment should be conducted. The debate went on for some time, with some incredibly insulting rhetoric from MPs, while others told heartbreaking stories of what some of their constituents are going through as a result of the reforms.

Towards the end of the debate, as the arguments from all sides had been put forward, MPs that had otherwise been absent began to filter into the chamber to cast their vote, having missed every tear-jerking word about what disabled people around the country are being faced with. They didn't warrant us the time to listen or considered other things more important, but they were clearly available to vote.

Sadly, once he votes were counted, we got the depressing result that many of us dreaded. The 'noes' had it by 69 votes [Ayes: 227 Noes: 296]. Rather than look at the impact, the enormous amount of suffering, that their cuts are causing, they instead chose to bury their heads in the sand and continue to think they are going in the right direction. How very wrong they are. Lives being lost, disabled people being forced into poverty, being forced out of their homes, that's not the right direction. Far, far from it.

Yesterday someone expressed to me that they consider us lower than cattle, and thinking about it I'm not sure I agree. Cattle are living creatures. To so many MPs I'm beginning to get the impression that we're simply a figure. A name on a computer screen and a list of conditions. Money being extracted from the coffers.

We're not even human anymore.

Please, please sign the WOW petition. I understand many don't as 'petitions don't have any impact', but we have to do something. It only takes a minute to sign and with enough signatures, enough public support, we may be able to force their hands and show them how desperately a cumulative impact assessment is needed. While the government has turned down the idea of having a one, enough public support and we may still have a chance.

Disabled people are being lost, forgotten. We need to act and at the very least show what the government is doing to our lives is unacceptable.

They must be held to account.

22 comments:

  1. Great piece, in truth seeing them up close yesterday I think most are simply choosing to remain ignorant they then build ideological justifications for why ignorance is a good thing, though some are also just plain evil! Thanks for the wow mention and as we say, it isn't just a petition, three phases-

    Phase One: Gain 100,000 signatures to give our demands democratic legitimacy in seeking parliamentary redress.

    Phase Two: With a caucus of supportive MP’s gain as much as possible in the democratic & parliamentary process to stop the human rights abuses against us and restore our health and social security systems. Including debate, free votes, Cumulative Impact Assessment and independent inquiry.

    Phase Three: Where parliament and inquiries fail us we will pursue justice through the courts both national and international for the human rights abuse perpetrated by the UK government and its associated corporate allies.

    And the only petition that says in return for your signature you get the chance to maybe see a govt minister sent to jail, now that is a return on investment that cannot be missed!

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  2. Anonymous01:06

    great post, and sadly it is the truth. my disability forms came a few days ago and while I try not to think about my situation, hope that's gradually built up for the future is shattered within seconds.
    these days I don't know what's worse - the actual physical condition or the mental health component.
    i'm seventeen years old and I can relate to your post. having a random long-term neurological medical condition that left me partially paralyzed still has it's effects today.

    i'm fed up of having to admit things like i'm 'suicidal' 'has trouble getting dressed' 'needs help getting in and out of shower' 'can't get out a chair by herself' i'm seventeen, yet, i'm an absolute burden on the state apparently.

    what I have, is a 1 in a million disease that has no cause, it can happen to anybody, at any given moment, so I wish people would open their eyes!

    I see you've been campaigning for CIA disability too, keep up the good work x

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    1. Sorry to hear you're having to go through that! Both the health difficulties and the reassessment. I really hope your assessment is as stress-free as is possible with them.

      I wonder the same myself some days about which is worse; the physical difficulties are an absolute nightmare, but the mental health problems often sap any hope or will from me in a second.

      One of my conditions, syringomyelia, is incredibly rare too and has also led to paralysis. No one's quite sure why it happened and it's been symptomatic since I was 16-17. Back then, and earlier when I had different problems, I felt the same about having to have my life dissected on paper. I still feel exactly the same now. It can really wear you down, as though admitting it somehow makes it more of a reality.

      I hope the very best for you in the future, hang in there <3

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  3. I've just had my DLA stripped from me through the combination of a mistake I made filling in the form and 21 errors in the WCA report. So because of this, I may soon lose my car as I cannot afford to run it without DLA, this means that I will be stuck indoors. I will not be able to help at my voluntary job (one day a week, and a day off after) hence will lose my mental stimulation and will be bored out of my tiny skull.

    I fully agree with the dissection you have to undergo when filling in the form, but then, if you appeal they ask you questions like "In 2009 you could walk 50 metres, when did it go down to 20?" As if it was a switch you flicked to reduce your walking ability . In addition, if you say you force yourself to do something and then suffer the rest of the day, they say "That's alright, you can move the next day!" As if!

    I am Tony Turtle, I am not a number!

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    1. So sorry to hear what you're going through. They really don't seem to understand or care about the impact their decisions have. So many people have reported errors in their WCA reports which makes up for such an enormous part of the assessment. It's a disgrace and it's ruining lives.

      For so many people it's hard enough to get out, and things like voluntary work, going out somewhere every now and then can do so much for mental health and keep you feeling included, but it's so reliant on transport and so on.

      Being able to walk 20 metres, cut up your own food, shower by yourself.. Doing it one day can completely ruin your chances of doing it in future. Spoon theory describes it really well; you only have a certain amount and you need to conserve them for subsequent days. They simply don't understand this because 'you can do it once'.

      Continue to be you, don't let them turn you into a number in their statistics.

      Solidarity.

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  4. Anonymous19:14

    Having talked to someone from citizens advice awhile ago I was quite disturbed to find out that the only real test for medical examination is showing up, as far as they're concerned if you can show up to the exam you automatically get failed/classed as fit to work which is wrong, they don't take into account your actual illness and that needs to stop.

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    1. Pretty much. The nurse who worked for Atos blew the whistle on a lot of what they were told to look for in claimants. This website shows a list of the kind of things assessors were allegedly told to look for.

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  5. I just got my forms and the thoughts of killing myself are very strong, but I self-harm to try and take control of the thoughts. I have not worked for 20 years due to multiple illnesses and disabilities, I have had about 10 government medical examinations for incapacity and DLA (life award of low care ( afraid to challenge that part) and high mobility) I now stand to lose them all as this government has decided that disabled people are not disabled any more but are cheating skivers. I cannot imagine living without my benefits as they have enabled me to feed and clothe my family while I lie in bed in pain and too exhausted to cut myself. I am glad there are people who are fighting for me as any fight I had died soon after this government was formed. My doctors, and nurses know me they help me get my head around my conditions and why I take over 7000 tablets a year as well as 750 injections and inhalers and creams, why can't the government trust them to say whether I am fit for work or need help with care and mobility.

    Take care and thanks for fighting for me and all the other people who are unable to defend themselves. Xx

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    1. You're welcome, thank you so much for sharing your story. I really hope it helps highlight the problems for others.

      I'll fight as much as I can, for a long as I can. I just hope it has an impact. x

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    2. Please please get help filling in the forms. You can try your local Citizen's advice bureau, or Welfare Rights. You can also get good online advice. Remember that if you can't do something reliably, repeatedly and in a reasonable time, then according to the DWP's own guidance, you cannot do it at all. Don't try to put on a brave face, you need to describe yourself as you are on a bad day. If you can struggle to walk the 200m to the shops but have to stop to rest 5 times, then you can only walk 40m. Please put together all the medical evidence you can find. There are good facebook pages offering support from fellow sufferers of the ATOS system ('Atos Miracles', 'The people vs the government, DWP and ATOS', 'Disability and benefit support - dont go alone'). best ofluck with it all.

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    3. Thanks for the advice, am using internet help as live rural and have no welfare rights and CAB too busy, I do base my health on worse case scenario which is very depressing. I have a worse problem at the mo, my doctor is away on holiday until August and my forms have got to be in the end of July, I have no other doctor in the surgery that knows me so I am a little screwed there. My mental health worker can do a letter but it's my physical health which stops me working.

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  6. Extraordinary post. Thank you for it, for your courage and determination. I can't begin to fathom how difficult it must have been for you to write this, but I am enormously grateful that you have.

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    1. Thank you. Hopefully it will help some more people understand what so many of us are facing, and perhaps even join the fight. We need as many voices as possible.

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  7. I am 26, a transman and have a string of problems. I am bladder incontinant, have epilepsy, EDS hypermobility type, and a range of mental health problems, including Emotionally Unstable Personality Disorder and depression resulting from my transgender status.

    I had 4 ATOS assessments in the last 12 months and am in WRAG for ESA. I get higher rate care and mobility DLA. I am terrified of the change from DLA to PIP.

    I have been told by ATOS that they only quickly glance at the forms before assessments which is why one of my appointments was booked with a HCP who is not allowed to deal with people with Dyspraxia..

    How much longer can this go on? Its just not fair

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    1. Wow, that's a lot of assessments in such a short time. Did they give you a reason for putting you through so many? That's absolutely awful!
      I'm amazed they actually admitted they only take a glance, typical that it should be as an excuse as to why you were given an [presumably] unsuitable assessor.

      Given how everything's gone with the change from incapacity to ESA, I think it's understandable to be scared about the change from DLA to PIP. I'm terrified of it myself, too. They've got such an awful track record at handling disability, it's unbelievable they're continuing to get away with it as it is, let alone rolling out more drastic changes as they are.

      It shouldn't be going on at all, I fear we may have a long way to go yet. The system's a mess.

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  8. Why can't you sign this petition with a Google email address? :-(

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    1. I didn't realise you couldn't. May be as gmail is commonly used for spam/false accounts? It's why some sites block them.

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    2. You can, me and my partner both have Gmail accounts and signed it :-) great post by the way, thanks for opening up x

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  9. Anonymous23:13

    Great post, I have already signed this petition. My best friend has to complete these forms as she has EDS and in my work I saw the very real impact they can have on people experiencing mental health distress. I really hope we can get enough support to make them listen.

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  10. Anonymous13:52

    I've already signed the petition too. Beautifully written piece, it's hard to understand how anyone could think this system was appropriate for assessing the sick and disabled. I am posting this to my blog 'benefit Tales' (welfaretales.wordpress.com).

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  11. Heartbreaking post. I 'only' have MH issues, but the WCAs I've had just about broke me. Every time I have to fill in a questionnaire and attend an interview, I sink lower and lower into depression. I've been lucky. I only failed my first assessment, but that first assessment was when I was having intensive help from the Crisis Team. A lot of resources that should have gone towards making me better went towards stopping me attempting suicide again instead, because the ATOS assessor lied about what I said.

    That's what ATOS do.

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