The disability benefits system takes your dignity in exchange for money

It's not pleasant to have to ask for help. The cuts to the Independent Living Fund - delivered in a court room that wasn’t accessible to wheelchairs - are a stark reminder of the reality of life as a disabled person in Britain.

I haven’t been well enough to work much recently. I feel I should say that, though it’s none of anyone’s business. It doesn’t feel good. The fatigue, the pain, whatever. Yes. But the confession of it. Stripping off your privacy in front of strangers. Admitting that you are not doing the things you’re supposed to be able to.

No one should have to do that. No one should have to invite anyone into the most personal aspects of their lives. No one should have to present their incapability and sit with the shame that comes along for the ride.

But, as a society, we force people to do that constantly – that is, after all, how a benefit system works. We take people’s dignity in exchange for money and judge them for needing it.

We could pretend we don’t - or perhaps, increasingly, admit we do and term it the "right choice for difficult times". It does sound uncomfortable when you start to acknowledge it. It begins to feel like the sort of thing that good people shouldn’t talk about. As time goes on, and progression looks more like regression in this country, good people are the ones who start talking very loud.

The disabled, the chronically sick, have always had to lay themselves bare to be deserving. That’s just how these things (apparently) work. There’s a dominant group, and the needy are judged to see if they meet the standards the former in order to get help. Lately, as the welfare system shrivels and shrinks, and our collective empathy seemingly with it, we’ve been judging people for even asking. We’ve been getting very good at that.

It isn’t pleasant to need help. Perhaps, on a pile of falsities and illusions that keep this whole thing going, that’s the central myth that needs to be destroyed. The idea that there is something easy or enjoyable in asking for someone to help you meet basic needs, and that this is such a common, logical trait to being human that swathes of people do it daily.

It is not pleasant to need someone to help you. It is not enviable to have to ask, to admit that you – person, adult – are not able to take care of yourself. That feeling will only ever increase when who you’re having to ask for help makes it clear they’ve really no desire to give it to you. Perhaps they talk badly about you; they might even have nicknames they use behind your back. They might feel so confident that others share their opinion that they say it to your face. Maybe they give you the help but do it begrudgingly, deceiving and demeaning whilst expecting you to be grateful.

And what do you do? You take it. There is no avoiding that. When meals consist of sandwiches and biscuits because you can’t cook hot meals or you’re incontinent but can’t afford the toiletries to clean yourself, there is no avoiding any of it.

That’s the moment of vulnerability; the state that well-meaning supporters often find themselves referring to. It’s a myth that it comes earlier; that a group of people, by virtue of sickness or disability, are simply ‘the most vulnerable’. As if it’s a fixed, natural position, unaffected by how others act. Vulnerability is potential; the risk that one day, on the whim of political pandering the support system crumbles, and you will be lost. Vulnerability is the wait. When you know the fabric of your life is at the mercy of others, the threat is more than enough.

In Britain, that threat has become real. The Independent Living Fund, which has been cut or abandoned to local authorities, is the latest loss to respect and dignity. This particular benefit gives, by definition, life and independence to 20,000 severely disabled people. Although it is a number on a spreadsheet to some, to others it is the personal assistant who comes to help you to the toilet in your own home. A handful of disabled people took the Government to the High Court over it but today lost their case. The news was delivered in a court room that wasn’t accessible for wheelchairs, reminding the excluded and the isolated of their place.

There will probably be talk of the consequences over the next few days. Perhaps stories of how the fund helps recipients get washed each day, or avoid sitting in adult nappies in their home, or being put in residential care. No one should have to say those things but at this point there is little choice.

The system has always demanded that you parade your pain and now the fight against it demands the same. Dignity is donated to the cause. The cause is protecting as much dignity as you can.

A mobility scooter. Photo: Getty

Frances Ryan is a journalist and political researcher. She writes regularly for the Guardian, New Statesman, and others on disability, feminism, and most areas of equality you throw at her. She has a doctorate in inequality in education. Her website is here.

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Find the EU renegotiation demands dull? Me too – but they are important

It's an old trick: smother anything in enough jargon and you can avoid being held accountable for it.

I don’t know about you, but I found the details of Britain’s European Union renegotiation demands quite hard to read. Literally. My eye kept gliding past them, in an endless quest for something more interesting in the paragraph ahead. It was as if the word “subsidiarity” had been smeared in grease. I haven’t felt tedium quite like this since I read The Lord of the Rings and found I slid straight past anything written in italics, reasoning that it was probably another interminable Elvish poem. (“The wind was in his flowing hair/The foam about him shone;/Afar they saw him strong and fair/Go riding like a swan.”)

Anyone who writes about politics encounters this; I call it Subclause Syndrome. Smother anything in enough jargon, whirr enough footnotes into the air, and you have a very effective shield for protecting yourself from accountability – better even than gutting the Freedom of Information laws, although the government seems quite keen on that, too. No wonder so much of our political conversation ends up being about personality: if we can’t hope to master all the technicalities, the next best thing is to trust the person to whom we have delegated that job.

Anyway, after 15 cups of coffee, three ice-bucket challenges and a bottle of poppers I borrowed from a Tory MP, I finally made it through. I didn’t feel much more enlightened, though, because there were notable omissions – no mention, thankfully, of rolling back employment protections – and elsewhere there was a touching faith in the power of adding “language” to official documents.

One thing did stand out, however. For months, we have been told that it is a terrible problem that migrants from Europe are sending child benefit to their families back home. In future, the amount that can be claimed will start at zero and it will reach full whack only after four years of working in Britain. Even better, to reduce the alleged “pull factor” of our generous in-work benefits regime, the child benefit rate will be paid on a ratio calculated according to average wages in the home country.

What a waste of time. At the moment, only £30m in child benefit is sent out of the country each year: quite a large sum if you’re doing a whip round for a retirement gift for a colleague, but basically a rounding error in the Department for Work and Pensions budget.

Only 20,000 workers, and 34,000 children, are involved. And yet, apparently, this makes it worth introducing 28 different rates of child benefit to be administered by the DWP. We are given to understand that Iain Duncan Smith thinks this is barmy – and this is a man optimistic enough about his department’s computer systems to predict in 2013 that 4.46 million people would be claiming Universal Credit by now*.

David Cameron’s renegotiation package was comprised exclusively of what Doctor Who fans call handwavium – a magic substance with no obvious physical attributes, which nonetheless helpfully advances the plot. In this case, the renegotiation covers up the fact that the Prime Minister always wanted to argue to stay in Europe, but needed a handy fig leaf to do so.

Brace yourself for a sentence you might not read again in the New Statesman, but this makes me feel sorry for Chris Grayling. He and other Outers in the cabinet have to wait at least two weeks for Cameron to get the demands signed off; all the while, Cameron can subtly make the case for staying in Europe, while they are bound to keep quiet because of collective responsibility.

When that stricture lifts, the high-ranking Eurosceptics will at last be free to make the case they have been sitting on for years. I have three strong beliefs about what will happen next. First, that everyone confidently predicting a paralysing civil war in the Tory ranks is doing so more in hope than expectation. Some on the left feel that if Labour is going to be divided over Trident, it is only fair that the Tories be split down the middle, too. They forget that power, and patronage, are strong solvents: there has already been much muttering about low-level blackmail from the high command, with MPs warned about the dire influence of disloyalty on their career prospects.

Second, the Europe campaign will feature large doses of both sides solemnly advising the other that they need to make “a positive case”. This will be roundly ignored. The Remain team will run a fear campaign based on job losses, access to the single market and “losing our seat at the table”; Leave will run a fear campaign based on the steady advance of whatever collective noun for migrants sounds just the right side of racist. (Current favourite: “hordes”.)

Third, the number of Britons making a decision based on a complete understanding of the renegotiation, and the future terms of our membership, will be vanishingly small. It is simply impossible to read about subsidiarity for more than an hour without lapsing into a coma.

Yet, funnily enough, this isn’t necessarily a bad thing. Just as the absurd complexity of policy frees us to talk instead about character, so the onset of Subclause Syndrome in the EU debate will allow us to ask ourselves a more profound, defining question: what kind of country do we want Britain to be? Polling suggests that very few of us see ourselves as “European” rather than Scottish, or British, but are we a country that feels open and looks outwards, or one that thinks this is the best it’s going to get, and we need to protect what we have? That’s more vital than any subclause. l

* For those of you keeping score at home, Universal Credit is now allegedly going to be implemented by 2021. Incidentally, George Osborne has recently discovered that it’s a great source of handwavium; tax credit cuts have been postponed because UC will render such huge savings that they aren’t needed.

Helen Lewis is deputy editor of the New Statesman. She has presented BBC Radio 4’s Week in Westminster and is a regular panellist on BBC1’s Sunday Politics.

This article first appeared in the 11 February 2016 issue of the New Statesman, The legacy of Europe's worst battle