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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Young people want big ideas – that's why I refuse to dumb down Radio 4

My week, from finding a way through the fog to getting the quarterly audience figures.

I walk to work through Regent’s Park, when possible accompanied by my dogs, which my husband then collects on his bike ride and takes home. If there is time we have coffee together in the small hut just before the inner circle. This is a good way to listen to the Today programme, I find, as I can keep one ear in, achieve a rational, critical detachment and still enjoy the birds, and then add the other ear if a strong interview demands immersion, or take both out altogether when despair creeps up. On the subject of Today, I hope to have some fun with Sarah Sands, whom we have just appointed as the programme’s new editor; it’s good to see an experienced woman brought in at a senior level to the BBC.

 

A winter’s tale

The park through the seasons has become something of an addiction, measured out by inspired planting of appropriate annuals, the names of which I note and discuss with the gardeners when I dare interrupt them.

Memorable events occur quite frequently during this walk: I once stumbled upon a proposal of marriage involving a beautiful young woman who once had worked for me; an elderly Chinese gentleman practises t’ai chi regularly at a certain spot and I imagine talking to him about the changes he has seen in his lifetime back home. I have seen a rare green woodpecker on the grass pecking boldly in plain sight, and hopeless ducks, silent, puffed up, marooned in the fountains, unable to find their way back to the ponds, so close by.

At the start of winter, while walking home one day, I got stuck in the park, with a group of other stragglers, as the gates locked with the onset of darkness. Rather than retreating the way I had come, I accepted the offer (from a rather good-looking stranger) of a lift down from the top of the gate. The atmosphere then was alive, exhilarating, with crowds heading for the Frieze Masters marquee. How different it all is now, in 2017. There’s a new mood, a new American president, a new era.

 

Musical interlude

Recently, Roger Vignoles – the glorious pianist and a close friend – was playing, as he often does, in a lunchtime concert recorded for Radio 3 around the corner from Broadcasting House at the Wigmore Hall, with the baritone Roddy Williams. French songs: Fauré, Poulenc, Honegger, with a handful from Caplet (the latter quite new to me). All thoughts of politics fled, giving way to “L’adieu en barque”, set late one summer’s day on the river, a moment to clear the fog, both within and enveloping us that day in London.

I left an hour later in clear sunshine, feeling smug because we have commissioned Roddy’s Choral ­History of Britain for Radio 4 later this year.

 

Power trip

Waiting for coffee to brew, I was discussing Book of the Week with Gill Carter, commissioning assistant on this slot, when my drama commissioner, Jeremy Howe, put his head round the door. “Clarke Peters (yes, the one from The Wire) is here reading The Underground Railroad for Book at Bedtime.” Assured, deep tones rang out from a tiny studio on the third floor. “I have to keep stopping,” he said, as I thanked him.

Who could not be overcome by this story of slavery and bravery at this moment in American history? I am so glad to bring it to listeners this month. “Can you help?” the producer pleaded as we left. “We’re about to be thrown out of the studio.” That’s real power, I thought, as ten minutes later Jeremy had conjured up the extra time.

Clarke Peters will be back in the autumn with a series about the real history of black music in the UK which, he says, is little understood.

 

Culture and anarchy

This is the time of year when we launch the commissioning round calling for big ideas for next year. It’s a humbling thing to stand in our beloved art-deco Radio Theatre in front of hundreds of programme-makers, hoping that they will be inspired to bring “the best which has been thought and said in the world” (my guiding principle from Matthew Arnold).

I try on these occasions to lay out a little of how I see the shape of the world in the commissioning period ahead. This year the Loneliness of the Long-Distance Runner overcame me. Better perhaps simply to outline the way we commissioned the first week of 2017 to catch the mood. T S Eliot, more or less all New Year’s Day, read by the formidable Jeremy Irons, raised an echo of the Thirties, then a factual series of considerable documentaries across the week described The New World, followed by writers around the globe Imagining the New Truth.

Finally, inspired by Twelfth Night and the spirit of misrule, the comedy writer John Finnemore, one of our favourites, took over as the Lord of Misrule himself.

The imaginative world and writers have never been more needed. Whether it is truth or post-truth, I suspect that dramatic, imagined and creative truth when properly achieved is probably the nearest we can ever get to truth itself.

 

Tuning in

It’s the week of Rajar. These are quarterly audience figures for radio. In the past few months, they tell us, over 11 million people have listened each week to BBC Radio 4, setting new records. Just under half are below our average age of 56 and 1.5 million are under 35. At the moment we seem to have over two million weekly visitors to the website and roughly 20 million monthly global downloads.

Who says young people don’t want intelligent content? Who says that dumbing down is the only way to attract big audiences? We at Radio 4 try to be all about smartening up. We mark Rajar Day (whether the numbers are up or down) with cake, so I make my way to Paul for two tarts, pear and blueberry this time.

Gwyneth Williams is the controller of BBC Radio 4

This article first appeared in the 16 February 2017 issue of the New Statesman, The New Times