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.

Photo: Getty
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Jess Phillips's Diary: Lazy attacks on “lazy MPs”, and how to tackle the trolls

The Labour MP for Birmingham Yardley takes us through her week.

As parliament kicked us out for the conference recess season on 14 September, several tabloids run the predictable story: “MPs go back on holiday today only NINE days after returning to parliament from a six-week summer break.” I imagine the journalist who churns it out hates doing the same tired “all MPs are lazy baddies” shtick as much as we hate having to rebut the nonsense idea that we are on holiday when we are working full-time in our constituencies.

Legislation is on holiday, not legislators. I have still yet to find an MP who thinks it reasonable that parliament shuts for three weeks for conference season. Why can we not have these conferences at the weekend? Or during the summer recess? Hell, why do we have to have them so regularly at all?

Is the nation screaming out for the politically minded to spend hundreds of pounds sleeping on the floor of an overcrowded Airbnb in a seaside town after a heavy night on warm wine and small food? I’ll wager that you cannot find me a person on the Clapham omnibus – or frankly any omnibus, whatever an omnibus even is – who thinks we should have a week off making laws so that the Lib Dems can do karaoke.

Her Maj

As well as time off for conference, it seems that the Tories will be scurrying home early every Wednesday as well. They appear to be on strike from voting on any opposition day motions as their governing partners, Northern Ireland’s Democratic Unionist Party, play fast and loose with their allegiances. (The DUP backed a Labour motion against raising tuition fees, which the government says is non-binding.)

I and other Labour MPs sat in parliament and watched ministerial cars speed off on 13 September as the whips told the great and good to go home. Her Majesty’s Most Loyal Opposition is a pretty important part of our democracy. If I were Her Maj I might be more than a little peeved that Mrs May cannot be arsed to turn up to fight for what she believes in, whatever that is. Presumably whatever Boris Johnson and his gang say it is this week.

Leave the kids alone

I spent the weekend at a local Labour Party fundraiser, at my surgery, and handing out certificates to hundreds of young people graduating from the National Citizen Service. I sat in front of a lively, wildly diverse group of young people and thought we should hand over managing geopolitics to them for a while. Even the naughty kid at the back (whom I had to scold) gave me more faith than what I see on the news.

Family life

At a debate about the abuse of MPs, the traditional Tory colonel Bob Stewart told the house that his son had been targeted and isolated by his schoolteacher because his father was a Conservative MP.

Now, I’ve had my run-in ins with the colonel in the past, but I was horrified by this – one of my sons is the same age as his. As a parent and an MP I dread the idea that my choices will cause my sons’ grief. I’ve got enough guilt about leaving them half the week without their being targeted and bullied. I once found my son and his mates watching videos about me on YouTube that had been made by men’s rights activists. The vicious content was unsettling enough, but the thought of his teacher joining in the hate is harrowing (and, I’m pleased to say, completely unthinkable at his school). Our families are conscripts to this life – some are conscientious objectors.

Troll detection

So, should we ban internet trolls who abuse MPs online from voting? This is the suggestion floated by the Electoral Commission. I can see the argument for trying to make people treat the electoral system with respect. I also think we have got to have a hard line and a punishment. I’m just not sure how we will decide what is abuse. People say sexist stuff to me all the time. Would a negative comment about my appearance count, or are we talking rape and death threats? (What a time to be alive, when I can give a traffic light system to my sexist online abuse.) To some, the idea of having your vote taken away would only provoke a shrug; but to me it seems too much.

Climb every mountain

I have nearly finished More in Common by my friend Brendan Cox. It is about his late wife, my friend Jo, and is brilliant, but I dip in and out because I want it to last. Reading it makes me feel so tired: maybe because I read it in bed, but also because Jo’s energy and adventures seem exhausting. I like mountains on a screen saver, but I wouldn’t climb one, especially not with a tropical disease or a baby in my belly.

I’m also exhausted because of the ridiculous late nights we seem to be adopting in parliament. Jo’s distaste for the silly hours is covered in the book. She couldn’t understand why we couldn’t start earlier than 11.30am and finish in time for people to see their kids. As I put down the story of her life (and, my god, what a life) I’ll gladly trek for her to the seemingly impassable peak of reforming the voting hours in parliament. 

This article first appeared in the 21 September 2017 issue of the New Statesman, The revenge of the left