I try to be positive about my life, I try to tell myself I have worth despite my illness, but sometimes things come at me out of left field that make me question whether I should bother.
Yesterday I read a story in the news about Michael Forsyth, who is being asked to repay all the PIP payments he’s received – nearly £18,000 in total – after ‘surveillance’ found that he had, among other things, attended a charity football match, walked his dog on a daily basis, and washed his car. You can read his story here: Sunday Post
Michael’s Consultant provided a report to DWP stating that he faced problems with balance, exercise tolerance, speech difficulties and cognitive difficulties, but this was dismissed by the DWP who have said ‘sometimes a medical professional can only give their best guess about what a person is able to do’.
At the moment, I am signed off sick from work with yet another relapse. My fatigue is so severe, and my balance and walking so bad that I don’t think I can go back. I’d hoped that PIP and ESA might be a lifeline for me – after 20 years in employment, paying taxes, I hoped that the welfare state – the ‘insurance policy’ I’ve been paying into all my working life – might provide me with a safety net, but this story has made me realise that there are four things about the welfare state today, that means it totally fails most people who genuinely need it.
Firstly, Big Brother is watching you. Who would have thought, after filling in a massive form detailing all the things you cannot do due to your illness, after providing reports from the clinicians who know most about it, having had an interview in which you’ve had to prove, face-to-face that the things you, and your clinicians have said about you are true, that still DWP would need yet more evidence, collected through covert surveillance and nosing at your social media accounts. This is deeply troubling to me, and it should be to everyone, not just people thinking of claiming state benefits. We proclaim to be shocked by Cambridge Analytica harvesting our Facebook data for political ends but this to me is far more sinister – our own government checking up on us. And the efforts made to snoop and spy on an innocent person seem totally out of proportion to the theoretical crime committed.
The reason DWP go to so much trouble to carry out this surveillance can only be because of a pervasive belief that If you are on benefits, you are a benefits scrounger. The prevailing rhetoric in the press for some time has been that we pay too much money in benefits to too many people who don’t actually need – or deserve them. But the Work and Pensions Committee found that the PIP assessment process is failing, with assessors fabricating information to undermine claimants’ ability to claim the benefits they are due, and the system is stacked against users – with assessment centres situated in venues with no wheelchair access – the evidence shows that the people who need these benefits are not in fact able to access them.
I’ve written before about how, before MS, I went to Glastonbury Festival numerous times and how one day I’d love to return. I worried that it would be impossible because of my reduced mobility, but I found out that I can access help to get around the site and I was excited about the prospect of going back. So I was very disappointed to realise that, according to DWP You can’t live a normal life if you have a chronic illness. DWP found out from Michael Forsyth’s Facebook page that he attended T in the Park, and that was taken by them as evidence that he did not meet the criteria to receive PIP. Without understanding anything about the things he had to do to make his trip to T in the Park possible, DWP have assumed that just attending a festival, having fun, spending leisure time, means you are a scrounger, who needs no help from the state.
Let’s remember what PIP stands for. Personal Independence Payment. It’s not an out-of-work benefit, it’s money to help with the additional costs of a disability. Things like having to take a taxi somewhere because you can’t walk, getting your shopping delivered because you can’t manage to get around the supermarket. It’s meant to help you carry on living with a disability and retain some independence – but evidently the life envisaged for you if you are in receipt of PIP is one where you don’t go out and have fun. Rather, presumably you are supposed to stay indoors, out of sight of the DWP spies, and flagellate yourself as punishment for being a leech on society.
Assumptions about how they are meant to behave dehumanise disability benefits claimants, reducing them to nothing more than a disability, prohibiting them from being part of a wider, able-bodied society. Reading the comments on that article in the Scottish Post show how comprehensively the general public have swallowed this rhetoric, as well as showing their woeful lack of understanding of fluctuating chronic health conditions.
We all know that post-Brexit, post-Trump, we are living in a world beyond experts, facts, truth. It’s sad that the government itself has run with the narrative so enthusiastically. Now, The only truth that counts is the DWP’s truth. Now, just as with Brexit, knowledge that comes from the experts, the people with years of learning and experience, counts for nothing. Submit all the evidence you like, in the post-truth world your evidence has less worth than the evidence that DWP can collect about you, even though DWP’s evidence is taken out of context and interpreted perversely to support an ideological agenda.
Currently, people are rightly talking about the ‘hostile environment’ created for immigrants in this country, and how this has created massive injustices for people who have a right to be here. I’d argue that just as this ‘hostile environment’ for immigrants has been created by the government, and fostered by the tabloid press so that these injustices could happen while the public turned a blind eye, so there has been a ‘hostile environment’ created for people who claim benefits, and specifically people who claim disability benefits. I can only hope that in the same way the injustices experienced by the Windrush generation are coming to the forefront of public discussion, one day people will come to be aware of the injustices that have been meted out to people with disabilities.
I fear, though, that there will be many more Michael Forsyths before that comes to pass.