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.