If they won't I will

There's a lot going about on Twitter at the moment about the death figures for those claiming ESA in the past five years. It makes for some fairly scary reading. It's prompted a  UN inquiry into grave and systematic violations of disabled people’s rights

I'm just completing an edit on my first novel. I've been a bit reticent about sharing it with people, because it feels all vulnerable to get out there and say 'I've written a book.' But the book speaks of my fears of what a society might look like if this kind of thing was taken to the extremes - if violations of rights were taken much, much further than even this report warns. It's a YA story set in a dystopian version of England. There. I said it. I'm not saying a lot more, as I'm in the process of sending queries to agents and waiting for the inevitable knock backs. I'll tell you more when I self-publish it on Kindle :)

I know my story, and others like it, are glimpses into something that couldn't possibly happen. Well, I hope they are. Remember the Nazis? Stalin? Mao? It doesn't take much to look around and see that humanity really can be capable of the worst of atrocities. We can look around at our fairly moderate country, and say 'don't be daft. Nothing like that could happen here,' but I wonder if it could, actually, and I wonder if some of these stories about folks dying after being found fit for work could point to the fact that we are going downhill. I'm not one to go in for hysteria or accuse IDS of longing for the Workhouse society, (some days), but we do need to respond as a society to these figures and what they mean - it's unclear, as yet. My book reflects my experience of how the weak and the vulnerable are sometimes treated, but I'd hope that as a society we would be making better choices about how we care for those who most need it.

Psalm 82:3

Defend the weak and the fatherless; uphold the cause of the poor and the oppressed.

I say, #iftheywontIwill 

I hope that this investigation will be a trigger to something new, something good, where people in Government really listen to those struggling with sickness and disability, where voices are heard at last and where the weak are upheld and defended in our land. That's what I dream of. I need to ask myself how I can help make that happen. Retweeting stuff on Twitter isn't enough, is it? What can we do to really mean this? Praying is incredibly important, I believe, but prayer without action is not enough.

What am I doing? What are you doing?

Paralympics Meanderings

How fabulous are the Paralympics?

I love seeing how the athletes have worked so hard and triumphed over such adversity. They are inspirational. It's quite staggering to see how far some of them have come in their lives and their sport. And - well, they're fantastic athletes.

However, there is something of a backlash amongst the disabled and chronically sick community, especially as regards to one of the Paralympic sponsors, Atos Healthcare. One has to wonder why a company that has a £112 million contract to assess sick and disabled people for DLA and ESA, yet costs the taxpayer £60 million in appeals against decisions, 40% of which are successful, have been allowed to sponsor such an event. Especially considering the fact that many of the athletes making up TeamGB will have relied on Disability Living Allowance throughout their lives in order to do what they have done and become the athletes they have succeeded in becoming.

DLA is not an out of work benefit, it is a benefit helping disabled people to live lives with some possibility of fulness, not to mention to keep them alive. Disabled and chronically sick people need extra money just to keep existing with their disabilities. Transport, heating, technical aids, carers. The list goes on. And yet Atos have been tasked with assessing people on this benefit - even those given a lifelong award, with doctors' support - with the end view of reducing it by 20%. Even though fraud rate has been assessed at around 0.5%. Figures don't add up? Go figure....

I'll post a video explaining it more, for those who are interested. This video explains Atos' role more clearly, against the backdrop of a protest by disabled people that took place yesterday.

Equally concerning me in all this, and running throughout it, is the attitudes being fostered towards sick and disabled people. While it's great to comment on how the athletes have come through difficult situations and achieved incredible goals, there is an underlying rhetoric taking place which fits nicely with Atos' seeming aims. Basically, that disabled people can achieve such things, so if you're not, you're not trying hard enough. You're so much use, you're a scrounger, because you haven't given it your all, like these people, you haven't triumphed over your own personal adversity. You're sick: So what? So are they!

It's a worrying trend which is intensifying through society, from welfare cuts to newspaper articles. But think about it. You wouldn't think this about an able bodied, healthy person, that because they weren't running like Mo Farah they weren't trying hard enough? It's scary when you feel judged on being ill and judged even more on not trying hard enough to not be ill. Or to be fabulous anyway, within your illness.

I sometimes wonder if this attitude is somewhat prevalent in the church, too. The whole 'pull up your socks and get on with it' thing. Amidst praising the triumphant, we need to remember those who, for whatever reason, simply cannot triumph, or at least triumph in the way we may want them to. Remember those who are too sick to work, and even too sick to go out, and who are stuck there, and no amount of talking up what people 'can' do as opposed to 'cannot' will help them be able to. It also leads into the whole area of usefulness and uselessness. Seeing reports of such bravery can be very inspirational and can encourage someone to go for it; but we need to remember that for some it simply feeds into their own sense of uselessness. I will never be able to do something like this, I will never be able to work, I will never be able to contribute. I am useless.

I've had times of thinking like this (still do, on a fairly regular basis) and know how it is to be trapped in a body that simply won't. Simply won't ever be a body of an athlete, whatever I do, however hard I try. It's not possible for me. But does that make me of lesser worth than the athlete? Society is at risk of beginning to categorise sick and disabled people: Those who can, those who can't, those who won't, those who are worthless. Does church do that too?

I know someone who doesn't....

Those who 'just get on with it'...

So, this phrase has been vexing me somewhat lately. I'm not entirely sure why, but here's the thing:

'<insert name here> is so inspirational, you know. She is one of those people who just get on with it, you know, even when she has proper flu. She doesn't let it get her down.'

And there's that dreadful ad. Can't even remember what it is advertising, some overpriced and ineffective cold remedy, I believe. The one that extols the virtues of 'people who just get on with it', while showing a woman with a sniffle buying food, or some such getting-on-with-it-ness.

Now I think the problem for me in this is the implications about those who don't get on with it. Those who let it all get on top of them, those who stop, those who buckle under a little. It would be fine if this phrase was only bandied around about the usually well, but when it is applied to those who have long term conditions, it can all get a bit upsetting and in some cases intimidating.

You're doing your best to function, to fight through the pain, the never ending side effects, infection, exhaustion and whatever else, and you're having a bad day/week/month/year. You need to sit back and take it easy, to NOT 'just get on with it'. But you're bombarded by images and accolades of people doing just that, and how very inspirational they are. They don't let it get them down, they don't let it beat them. So if you do, you're pretty hopeless really aren't you.

OK, so I realise not every person is saying or thinking this. But it's more common I think than we could imagine. What I want to say is that you don't have to be inspirational today. You can stay inside, let life carry on and just cope. You can just be. And that does not mean you are in any sense worthless, useless or any other type of less. It simply means that you are hurting, you are human and you are taking time that you need to look after yourself. There may come a time when 'getting on with it' is better for you than not, and I am the first to say that a little activism can be a good and healing thing, but there is the time when it is just not. And that is OK.

The problem is, our society is throwing out ever more widely messages about what use someone is to society as a whole. Today I have read a report which says that workfare will be extended to people on ESA, and not only extended, but in fact people will be forced into unpaid work for an indefinite period - as opposed to normal workfare rules which put people into short term employment. What does this say about attitudes to disabled people? They are not worth very much as it is, so better make them more productive? Even if that work is unpaid? Now, many people with chronic conditions and disabilities find that working enhances their lives very much and I am in full favour of such for those able to do so and supported by their employers, but this new stipulation is somehow more sinister and has undertones of the whole 'drain on society' label applied by some. It's a scary world out there if you're ill.

What does God think, I wonder? Does God think people should just get on with it and should be productive and useful to society? Or does God just, actually, Love?

So I want to encourage you, all my friends who struggle with ill health of any description, to give yourselves a break. And to feel free to throw something at the TV when you next see the advert with that poor woman with the little sniffle who Just Gets On With It. ;)

Benefit Scroungers R Us

I am seriously worried about the future. Not so much for me, because I am blessed to have the support I have, but for those people suffering from chronic illnesses and disability who are running out of options.

You may think I am being somewhat over dramatic here, but in reality, there is a problem, and it is being hidden, and there is a systematic assault on the very people who need protecting most. But the news doesn't report this. The voices are dim, the fights are weak. The most vociferous are often the most suffering. And this is wrong.

A couple of weeks back there was a march against the DLA/ESA reform in London, called the Hardest Hit. It barely featured in the 1 O Clock news, let alone the 6/10pm slots. Was almost one of those afterthoughts - those 'aah, isn't this nice, people in wheelchairs out for the day' type things. And then came the Daily Mail type comments; 'if they can get down to London to protest, they can jolly well work and stop scrounging off the taxpayers money'. There is a lack of empathy pervading society that shocks me and leaves me cold, and yet this could be just round the corner for any one of us.

I had a look at the new proposed criteria for the 'Personal Independence Plan' and only became more worried about the narrowing of criteria and the loss of dignity this will inevitably bring. I fear that many will now be caught in a trap; that of not being 'disabled enough' to gain disability benefits, and yet being too ill to be employed, not being able to get JSA because of not being able to get to the Jobcentre due to illness or lack of mobility, having lost mobility allowance....and so on, and so on. A vicious circle of ever decreasing proportions which may leave some at best housebound and despairing and at worst - well, let's not go there. As a society which prides itself on looking after its most vulnerable citizens, we are in danger of falling into a pit of unseen depths. If you still think I am being dramatic, please take some time to read this to see how this is already affecting thousands.

For me as a Christian, this is affecting me so much because of how we see people. Are people valuable, or are they commodities? Do people matter because they are people, because they are who they are, or because of what they can bring to society? As someone who believes all are made in God's image and all are inexplicably precious and amazing, it feels like these reforms may be devaluing and cutting off those who cannot fight for themselves, and this is utterly contrary to God's ways.

For me as someone with chronic illness, this is affecting me so much because I am reliant; on my family and on society as a whole to live. Perhaps for those who have no support system their thinking will soon verge on whether they have any value at all, whether it is worth fighting, whether it is better to give up, and stop burdening others.

I am worried about the future. The future looks cold. What are we going to do about it?