A Culture of Fear

This is the piece of writing that’s been kicking around in my brain for weeks if not months.  And I’ve agonised for days over whether I should write it.  And when it goes live, I shall shortly thereafter be found indulging in a black coffee, some cake and an epic panic attack with subtle hints of paranoia and despair.

The crux of the matter is this.  In the UK, in 2018, it feels like the government is trying to make it objectively harder to live a good life as a disabled person.  Now, while I’ll try not to make this into a purely party political broadcast, there are things that this Conservative government is doing that simply cannot be ignored.  I have found myself wondering with increasing frequency of late, whether my negative focus on my cerebral palsy is in fact in large part because it feels like my government is trying to criminalise my mere existence.

The main issue is of course money.  Whether it be the matter of PIP and ESA assessments, which have done much to turn the words ‘Atos’ and ‘Capita’ into curse words among disabled people, or the gutting of vital NHS resources such as mental healthcare and wheelchair services, a Whitehall drive to balance budgets (allegedly) has adversely affected people most in need of support.  Benefits have long been demonised in the British press so that if one plays a simple game of word association and says the word ‘benefits’, there’s pretty good odds that someone will automatically reply with the word ‘scrounger’ – the two are largely synonymous and it’s an association that we see relentlessly pushed in the tabloid press.  Type ‘disability benefits’ into google and the results are full of news stories of people fraudulently claiming.  A poll in 2013 suggested that people felt that nearly a quarter of all benefits were fraudulently claimed, in the 2015-16 financial year it was found to be actually around 1.1% – and £1bn of that £1.9bn total was for housing benefit – which is not disability specific.  It has always been the public perception that frauds are everywhere, but the data does not back it up.  And let’s talk about this perception some more.  People seem to have this built-in view that receiving benefits is somehow to cheat the system and is a result of laziness and being simply workshy.  Never mind that many people receiving benefits actually are in work such as teachers and police officers – proving that for many, it is a means of keeping their heads above water.  It’s interesting that as these stories come to light, you can see public perceptions of benefits starting to shift, as people’s automatic image of the workshy benefit scrounger no longer match up.

As a disabled person with a visible disability, I’ve never been accused of being a scrounger because the wheelchair and walking stick play into a rather Victorian image of the ‘deserving poor’, which is presumably what those so against scroungers for the most part have in mind when they rail against all the fraud.  So you’d think I’d have nothing to worry about when my forms to complete my transfer across from DLA (Disability Living Allowance) to PIP (Personal Independence Payment) rattled through my letterbox in 2014.  But I did have fear, and lots of it.  Because these organisations and the assessments they run are staffed by people who do not necessarily have any understanding of the areas they are supposed to pass judgement on.  Headlines such as the person asked why she hadn’t committed suicide yet, the person asked when did they ‘catch’ Down’s Syndrome or the person who had their OCD disputed by an assessor on the basis that they hadn’t washed (FFS…) are met with shock by those not dealing with the system – and eye-rolls from those within it.  If you’re a disabled person having to fight your own government  for the support that you need then nothing surprises you any more.  The level of absurdity from the likes of Atos and Capita merely confirms to us that under the current regime’s view, we do not matter and can be discounted.  Many of us don’t think this – we know it – there is too much evidence to believe anything else.

Disability benefits, for mental or physical conditions are not simply extra pocket money.  They should be thought of as a way to bridge the gap that these conditions create in themselves.  I have a motability vehicle and people seem to think this is a ‘freebie’ – it is no such thing and it means I have a far greater scope to live and work independently – something that allows me all that is often met with derision from people who see nothing more than the shiny car.  And yet without it – I would need much more in the way of support – and would cost much more money!

Add to all this a health secretary who will surely be one day knighted for services to rhyming slang, intent on privatising the NHS piece by piece (he’s written a book on it…) and we see once again that the disabled community is adversely persecuted by savage cuts to services that help them thrive.

In 2014, throughout the PIP assessment process, I was utterly convinced that I would lose this means of independence.  Many with more profound disabilities than I have had their vehicles removed and even though I kept it – and receive PIP to this day, I still have that fear in my head as I write this.  There is no understanding of, or arguably a wilful ignorance of, the fluctuating nature of disability, the old adage often used in mental health campaigns of ‘good days and bad days’ is a symptom that many disabled people experience, but would be loathe to put on their paperwork.  And that in itself is indicative of the culture of fear that is perpetuated in this country if you are disabled.  If we are honest about how we are affected, we run a very serious risk (and I’ve run it) of losing out on things to which we are justly entitled.  It was so bad that it put my mental health (which at the start of the process was pretty good), in serious jeopardy and did not improve even with a positive outcome of the PIP process in my case.  I vividly remember sitting in my parents’ kitchen and realising that I was so deeply distressed by the prospect of having to go through PIP that I said, “Can you go through this form for me today because I physically CANNOT read.”  It was so stressful that it reduced me to a quivering wreck who was experiencing what was essentially a panic attack and became quite ill a few days later.  At the start of 2015 I suffered a mental health breakdown, looking back on it – I draw a strong link with the stress and anxiety brought about by the PIP process – and bear in mind – I’d had a positive result and a relatively benign in-person assessment experience.

As a disabled person, I feel that we are under attack from the politicians leading this government.  The DWP has spent millions defending it’s brutal process as those disabled people with the physical, mental and financial energy to appeal decisions win in court at a rate of around 66%.  That is not taking into account those for whom this is an impossibility, either due to their condition, or because they do not have the resources to mount a challenge.  If you are assessed for PIP you are not allowed to record the interview.  How’s that for transparency?  How’s that for fairness?  There are even increasing reports of the DWP spying on social media to try and catch people out.  Those are not the actions of a body interested in the welfare of its clients.  It causes a feeling of a police state, where the very idea that disabled people can walk further on their good days, or that sometimes those with depression can smile are used against them as a means to remove support.  As I say, I have agonised over posting this, because I do worry that this post may be used against me in the future – and all I can say is that that will prove my point and do nothing but validate the culture of fear.  I’m starting to feel that on matters of disability and support, George Orwell’s 1984 is ever more relevant.

We are being put in a position where support is given only if we cross increasingly difficult thresholds.  In mental healthcare the idea of someone ‘not being depressed enough to qualify for support is completely unsurprising.  Again, it does nothing to acknowledge the changing shifting nature of these conditions which are complex enough, and it puts people in a position of fearing recovery lest the things that aid in that recovery are withdrawn before they are ready.  If someone claiming PIP because of, or having treatment for, depression on the NHS experiences a welcome upturn in feelings, what kind of system is it where that is tinged with a worry that all lifelines will then be cut off because they’ve crossed the arbitrary line of ‘wellness’?  Disabled people cannot win.  We need the support which our government clearly is loathe to give us, and when we get it we live in constant worry of having it removed because we’ve taken steps to keep well.  For too long, the focus has been on work and not on health.  In mental health in particular this is the case, there seems to be no letting up in the stereotype that if mentally ill people are in work, their conditions improve as a matter of course.  This may be the case for some, but it has been taken as read by seemingly everyone except service users – even to the extent that Paul Farmer and national MIND have pissed away their credibility by colluding with the DWP in focusing on work as the central outcome of mental health intervention.  Work as more important than health – it’s a Dickensian part of our culture that seems even more in vogue recently…

The phrase ‘the innocent have nothing to fear’ has been used by successive governments in defence of all sorts of policy proposals that have been invasive of privacy on some level.  We’ve been assured by government that PIP, ESA and Universal Credit will go to the deserving.  But the vast majority of disabled people who’ve dealt with these systems believe no such thing.  I am innocent – I merely happen to have a disability.  And yet I live in a consistent state of fear because I am made to feel dirtied up in my country of birth, because I’ve had the audacity to claim money in order to bridge a gap to ‘normality’.  Because I’ve had the nerve to try and better myself and improve my condition, because I want to work and go my own way, I run a risk of being chased by my government because I’m a waste of money.  In 2016, I wanted to take part in a charity walk to raise money for PAPYRUS, a suicide prevention organisation I’ve been involved with for a number of years.  I wanted to do it to challenge myself to something extremely difficult and hopefully raise money to support young people at risk of suicide.  I backed out because I felt a genuine risk that this act of aspiration and pushing myself to my physical limits – would result in cutting my support altogether.  How screwed up is that?

I’ve no problem with people voting for the current system if it is in their interest.  That is a sensible act in a democracy like ours.  But I don’t know how any disabled person could vote for the current state of affairs on the basis of it being in their interest.  I have seldom felt so othered as a disabled person in my lifetime…

The culture of fear is real.  It is palpable, and I don’t think it’s going away any time soon…

 

 

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9 thoughts on “A Culture of Fear

  1. Very powerful writing and I completely agree with you- this should not be happening to you in a rich Western democracy. Have you tried approaching Change/ 38 degrees/Avaaz etc to publicise your issue? BTW, Melanie Reid (Times) is making these exact points already, and you have an ally there.

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    1. It’s already well-publicised, but there isn’t the willingness on the part of government to engage with the issue – it’s ideologically driven on an enormous scale…they’ve been found to be in breach of human rights many times over and haven’t stopped.

      I’ve not read much of Reid’s stuff as it’s behind a paywall but what I have seen is good – Frances Ryan in the Guardian has been making a similar case for a very long time.

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  2. That matches what I’ve seen and experienced so well (all too horribly well, really). I have long-term problems with depression, anxiety, the side-effects of medication and aspects of my personality. As these are completely “hidden” conditions, and as to many people I appear to function perfectly well, I’m even more likely to be considered a faker by the typical tabloid-reading haters. I haven’t received any benefits on those grounds since 2006. Instead I rely on getting Carer’s Allowance and Income Support on the grounds of helping a friend who’s my ex-partner – since the relationship went badly wrong in 2015 it’s been a particularly difficult situation. I haven’t even tried to get ESA and PIP as the chances seem virtually nil with the DWP rules being what they are, and how stressful the application process, appeals etc would be.
    I’ve been made poorer and poorer since 2013, largely because of government policy – benefits not keeping up with inflation, having to pay council tax, etc. And help that I had from a charity for several years has now ended, probably because they have even more people to help due to government cuts, and because donations to charities have gone down (and that’s presumably because the government has made so many poorer).
    Currently, money worries seem constant and almost overwhelming. They have a kind of “mentally paralysing” effect where I find it hard to concentrate on, and be motivated to do, various things. I also feel overtired and stressed virtually all the time.
    With the way I’ve been feeling for the last few years, even voluntary work, which I used to do successfully, feels too stressful, and one of the reasons I feel more anxious nowadays is because of the fear of losing what diminishing and inadequate income I have. And that would be even worse if I was on benefits for health reasons – they could be snatched away the moment someone in the DWP decided I was well enough not to need them, whether or not there was any truth in that (as you express so well in your post). And the worry that all this causes is one of the reasons I can’t get to the point where I could consider working.
    Since I had the most recent of my four very unpleasant depressive episodes, at the end of 2012, I haven’t dared to stop taking my prescribed antidepressant, despite the frustrating side-effects, because I’ve feared that, with all the worries and stresses I have, any slight physical illness or something else in my life might trigger bad depression again, and that, along with more personal reasons, is also because of the effects of government and DWP policy.
    Meanwhile, of course, proper NHS mental health provision for anyone with anything other than serious conditions has been virtually eliminated. I’ve seen the services cut and cut and cut for 22 years now, since I first had contact with the NHS about MH-related matters.

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  3. This is very truthful. I’m in America as it hard being a caregiver for my child. It’s hard for me,If I was well off I wouldn’t have the problems I have.

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  4. So refreshing to hear from someone who completely understands this. I have a back problem which I’ve had from the age of 12, 4 bulging discs, scoliosis, degenerative disc disease, arthritis and sciatica. (This wasn’t due to any accident… I get asked that a lot). Unfortunately due to this I’ve had to sacrifice my education, high school and college and sixth form. Each time I tried I seemed to fail physically. My mind is ready but my body lets me down. In 2016 I was in the process of transition from DLA to PIP. I had a motability car, which was my lifeline which is hard for others who don’t suffer from a physical or mental condition to understand. This gave me the independence I have always wanted, lessened my anxiety and nervousness as I didn’t have to worry about how I may get home, it was almost like a safe space for me essentially. After filling in tedious, and what seemed almost unrelatable questions about ‘how my disability affected me’ I had everything taken from me. I took it to appeal and had to go to a tribunal. I was 22 at the time of the tribunal and did the process myself after getting some advice from welfare rights. The judge who was in there made a stern point that I was to go back into education and thrive as she thought it was a waste not too, she said I spoke very well and clearly was academic enough to get back into education. I took her advice and managed to get onto an access course… this was my third time at college, and honestly an absolute nightmare for anxiety. As I don’t know how I’ll be until I open my eyes I was apprehensive to say the least. I have one more assignment to complete, and one exam left and I will have successfully finished this course, thanks to the support system at college who really do make the difference. However, I went to a ESA assessment, following this, I had my benefits stopped. The lady said I had great eye contact and totally disregarded my ‘severe/bad’ days, and there was no mention of my medical evidence brought with me. Since this I have no had a letter from PIP and a form to fill in about changes in circumstance. I am currently waiting to hear from the reconsideration for ESA. My biggest fear is that if my PIP is affected so is my future. Without a car I cannot go to the university of my choice, and even if I go to the one in my own city I wouldn’t be able to afford transport and I struggle physically with public transport. In all honesty my condition is something that I have to live with for the rest of my life, which will progressively get worse. I am the one who is up at 3am crying in pain. I am the one who has had to sacrifice my social life. I am the one that struggles to get out of bed to the toilet some days. The people who ‘judge’ a disability are doing merely that, judging. They are not with us on our ‘good’ days or ‘bad’ days, they are just checking off boxes that fit into their criteria. It feels like sometimes I’m being punished because I’m trying to better myself… I thoroughly enjoyed reading your blogs and I’ll continue to do so. Brilliant work. X

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    1. Thank you for reading – do pass it on.

      I hope that your next round of PIP/ESA is successful, strongly suggest you seek advice and assistance with filling out the forms from someone who knows the system – Citizens Advice Bureau would be a decent starting point. As someone who became utterly convinced that I was going to lose my motability car and thus my independence, I can really empathise with you on that aspect – it is terrifying and brutal and evil. I hope you come through it – do keep in touch.

      C.

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