But I dearly love the remarkable characters who've stepped up (or hobbled in many cases) to face it.
We are often unlikely warriors, with our limps and our oxygen tanks and our feeding tubes. But perhaps there was something the DWP didn't realise. Far from being easy victims, weak and helpless, it turned out (as we argued all along) that we were unbreakable.
Doctors hadn't broken us, endless hospital stays hadn't broken us, misdiagnoses, constant forms and judgement and unnecessary bureaucracy hadn't broken us. "Suffering" or "Hunger" or "Terror" might be abstract terms for most, but we had triumphed over them all. Some of us for decades in an endless Groundhog Day loop. How ironic that the DWP thought they had picked the most vulnerable targets of all, but found, in fact, that no elite crack squad of Royal Marines fight as hard as a group of sickies faced with destitution.
And so it is with Steve Sumpter and the "20 Metre Rule" "Latent Existence" to many through his blog and twitter accounts.
This is a long and tortuous story that I will try to cut short. The government decided that they were going to scrap Disability Living Allowance, the main benefit (for some 3.2 million, in OR out of work) that covers the extra cost of being disabled. There wasn't a hint of it in their manifesto. The new benefit (Personal Independence Payments or PIP) aimed to cut 20% from the existing "caseload". Whether it had any aims other than cost cutting is unclear.
The first Spartacus Report exposed that the new scheme was almost unanimously opposed and that the case they were making for why it needed cutting at all was dishonest. Undeterred, they marched on, ignoring all advice and overturning every sensible amendment made to the changes in the Lords.
Just as the details of the new benefit were being finalised, with no consultation or prior warning, the government announced that the qualifying distance you were able to walk to qualify for full mobility support would be slashed by an inconceivable 60%. From 50 metres to just 20 metres. The government estimated that a whopping 600,000 disabled people would lose their support from this measure alone - to give you some idea, 20 metres won't get most people to their car or even to their own bathroom. We took the government to court, arguing that the lack of consultation was unlawful and we won. We forced them to consult properly before they could go ahead. A new Spartacus report showed that over 30,000 people would no longer be able to get to work if the changes went ahead directly contradicting claims the coalition have always made that these changes were about helping sick and disabled people INTO work.
From the new consultation, of 1142 responses just FIVE supported cutting the distance to qualify for mobility support from 50 metres to 20 metres. The government ignored the consultation and went ahead with the change anyway. That, is not illegal.
So we took them to court again. With the unfailing support of Leigh Day Solicitors and Public Law Solicitors, we challenged the 20 metre rule itself.
That sounds easy doesn't it? But I think we forget that one brave individual has to be the "test case". One person has to stand up and say "OK, I'll put myself through all of this on your behalf." Going to court is unpleasant in every way - it's stressful, intimidating, frightening and physically demanding. Your life is exposed along with every last one of your insecurities. And you, small, insignificant, you must take an entire government to Judicial Review. If ever David and Goliath fitted modern allegory it is this. To top it all, Steve has ME along with other congenital conditions that make this fight more demanding than most will ever know.
The fact that he will detest this post and chastise me for writing it says everything about the man and his tirelessly supportive partner - who incidentally has given up her own successful career to be his carer. Let's not forget that all around the country people make this decision every day and get almost no support for doing so, saving the government £119 BILLION in the process.
As with so many of the cases, the court have ruled that the change itself was not unlawful. But as with every other case we have bought, they listed a litany of criticism and rebuke over both the way and the means they have used to push changes through.
BUT. And here is the big but. In the course of the case, this quote came from the Department for Work and Pensions, presided over with tencious if incompetent zeal by Iain Duncan-Smith.
"This was recognised from the outset. In developing the PIP assessment we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives. However, we believe that these impacts can be justified as being a logical result of distributing limited resources in a different and more sustainable way…”. DWP
As Steve says, let's say that again :
"In developing the PIP assessment we were aware that the vast majority of recipients of DLA were individuals with genuine health conditions and disabilities and genuine need, and that removing or reducing that benefit may affect their daily lives. " DWP
So Steve has fought and some will say he lost - though it may be that there are still other avenues to follow. But from today, we can all say with utter certainty, that this government knew that PIP would cause harm to genuine people in need. But they justified it through austerity.
They took support from sick and disabled people that needed it to get to work or to get dressed or to buy special treatments, to pay for the risk-taking excesses of out of control financiers we apparently dare not make pay.
So people like Steve are paying, and fighting with everything they have - and very much they don't have. They're fighting for 3.2 million sick and disabled people to continue to live lives many take for granted every day in a million ways they aren't even aware of. I hope they never become aware of the kind of struggle Steve has faced through all of this.
But if you ever do, if you ever find yourself sick and frightened, if life ever turns upside down for you when you thought you were the very last person it could happen to, maybe people like Steve will have saved the very thing you don't even know you're losing.