I sometimes think of myself as having undergone a particularly undesirable form of time travel. One minute I was enjoying a beautiful day in the Scottish Highlands, in the best physical condition of my life, doing the sport I loved. The next thing I knew (or at least, that I can remember) I was lying in a white room in a completely different time and place. Two good friends of mine were there, which in and of itself wasn't particularly surprising: I was an usher at their wedding, and although I don't see them as much as I'd like since they moved to Edinburgh, I’d recently climbed with him on a classic ascent in the Cairngorms, and the three of us had caught up for fish and chips later in the evening. What doesn't make sense is why my parents are also in the room. They don’t live in Scotland, and they’ve never met these friends of mine before. And I keep needing to ask them to take my glasses off, because my eyes won’t focus, and it’s hurting my head. Also, why can’t I move?
Fade to black. Leap forward. It’s night-time, and I’m screaming in terror. A kind lady in a smart uniform (a nurse?) is holding the part of my hand that’s not in plaster, speaking to me softly, telling me that it’s okay; that I don’t need to be afraid. But I am afraid. Where am I? And why can’t I move?
Such was my transportation into a brave new world. As I would learn in the coming weeks and months, it is a world demarcated by humiliation and dependency, fear and depression. Learning to navigate those coordinates seems, from what I can tell, to be the central challenge regarding how well (or not) one survives. I’ve written plenty enough about those features before. But there is another set of challenges, that I’ve so far largely been sheltered from, but which cannot be avoided forever. Taking inspiration from the famous German sociologist Max Weber, we might call this: learning to live in a new iron cage.
Prior to my accident, I’d had a gentle introduction to navigating the various bureaucracies that structure all our lives. Educated, from a stable family background, without money problems, employed, white, and male, in a society governed by basic principles of the rule of law – bureaucracies had for me been an intermittent nuisance, at worst, but things I hardly needed to be troubled by. If I lived, in the Weberian phrase, in the iron cage of bureaucracy (an unavoidable feature of modernity), then mine was a pretty pleasant one to subside in. Hence, indeed, why some scholars think a better translation of Weber’s German is “steel house”; a solid structure, for you to live in.
Well, whatever the merits of translations from the German, it is certainly starting to feel like a cage now. And as I say, I've largely been sheltered from having to manage the cage myself so far. But let me give you some indications of what is involved.
In the United Kingdom, everybody with a physical disability is entitled to apply for what is now called the Personal Independence Payment (PIP). Not means tested, PIP can result in a monthly cash payment, of different value depending on severity of disability. It is also the gateway for then being able to apply for further disability allowances, such as blue badges entitling you to park in reserved areas, entitlement to free public transport, etc. It is a pretty big deal, basically.
And one thing I was warned early on during my time at rehab was not to try and undertake this application by myself. Too risky. Instead, I should take advantage of the offer from the legal company Aspire to do the paperwork for me pro bono, because they know how to make sure that someone with a spinal injury gets the maximum to which they are legally entitled. Minor errors in the documentation, or downplaying your level of injury (out of a misguided sense of pride), can result in massive delays to the process at best, and substantial reductions in entitlement at worst.
Taking the advice to heart, I gratefully accepted Aspire’s offer. This was particularly helpful, not least because they could do a typed version of my application for me. (Lacking the ability to hold a pen, I was not able to fill out the official version for myself anyway.) They did a great job, and the first hurdle was duly cleared. The second, however, came more recently: I would now undergo an interview over the phone with a professional assessor, to determine whether or not my application was accurate. Or rather, both accurate and genuine.
For an hour, I was asked to confirm in detail every aspect of my condition listed on the form. Which might seem pointless. Why do you need to ask me to say out loud what is already written down? Well, I realised, because the default assumption here was that I was under suspicion. Did I really have all the problems that I claimed, or was I just saying these things in order to get higher levels of benefit? I couldn’t help feeling that when the assessor forgot to mention things like my total lack of ability to prepare food for myself, or the fact that I am at permanent risk of dying of autonomic dysreflexia, this was not entirely accidental – and remembering to mention these things by myself was itself a kind of test.
Perhaps I am just being paranoid here. But maybe not. I had been warned not to try and put a “brave face” on things when the interview came around, downplaying the severity of my condition; that the state is looking for reasons to mark people down – so play the game accordingly. Similarly, I had heard that new artificial intelligence programmes were being used to “reveal” likely benefit fraudsters within the PIP system. Hence I needed to be on my guard.
I am still awaiting a final outcome, but I think it went alright. (Notwithstanding the hour I spent on the phone the other day returning their call, just so that I could give them the date that I was discharged from hospital. If you think being on hold is annoying in normal life, try it sat in a wheelchair in a nursing home.) Still, it’s worth putting into context. I’ve spent 20 years honing my skills in being argumentative and holding my ground; it’s a basic prerequisite of my kind of academic research. Moreover, my general life experience up to this point is that I get listened to and have people take seriously what I say, plus I’m perfectly happy to fight my corner if need be (as noted above: white and male). Here the spill-over effects of my pre-accident life do still have considerable benefits when it comes to engaging with hostile bureaucracies. Imagine how much worse it would be for somebody who lacks my default levels of self-assurance and confidence; who maybe doesn’t know the intricacies of their medical condition as well as I do; who finds interviews stressful and intimidating? Even if my paranoia is imagined, paranoia is nonetheless part of the iron cage I live in now. And if anything, I need to count myself lucky, because there are worse things than paranoia to find adorning the cell.
The major other aspect of my new environment that I've been facing recently is connected to, but different from, the kind of paranoia just described. We might call it the heartlessness of bureaucratic administration. Let me give you an example.
In England, every local authority has its own “wheelchair services” attached to it. Back when I was in the Royal London Hospital in Whitechapel, because she was good at her job, my occupational therapist decided to start the ball rolling in terms of making sure I would eventually be discharged with a wheelchair. This might seem like a no brainer, but what she was alert to was the sheer amount of time it can take to sort these things out. Accordingly, my phone number was passed on to my local wheelchair services. A few weeks later I received a phone call. It happened to be one of the few days when my phone was in reach, and I could actually answer the call myself whilst lying in a hospital bed. Doing so, I was informed that it was the wheelchair services calling. Unfortunately, I was having a particularly rough day, and was due to have an appointment on the ward in 5 minutes anyway. I apologised to the person on the phone, probably somewhat incoherently, saying that I was still in hospital, and that I just couldn't talk right then. That was the last time I spoke to anyone on the phone from wheelchair services, but it could well be that I missed a call or two in the following weeks. I have no way of knowing, as no message was otherwise sent.
Fast forward a couple of months, and my parents are staying at my flat to enable them to visit me. They pick up the post. Inside is a letter from wheelchair services, explaining that because I had failed to engage with their attempt to contact me, I was being removed from the list of people eligible for consideration. Let's spell that out. After having a quadriplegic person, who was very much still in hospital, referred to them, my local wheelchair services decided that the appropriate response to not speaking to me on the phone was to assume that I didn't need a wheelchair…and to inform me of this decision by sending a letter to my home address, where I could not receive it given the fact that I was...in hospital…a place that I could not leave until I received…a wheelchair.
You might think this is some kind of one off, that I just got unlucky. But I've heard enough stories now from other people to know that this is more like the norm. Take for example the guy I met in rehab, who like me had suffered a cervical spinal cord injury leaving him tetraplegic. His wheelchair services had a policy (which is in fact the norm across the country) of not providing power wheelchairs prior to undertaking an independent assessment, once the patient has left rehab. It is, in other words, par for the course for tetraplegics to be discharged from NHS facilities in heavy manual chairs that even people who can use their hands struggle to push at first. As you can imagine, this would be bad enough in standard cases, and is indeed much grumbled about. But here is an added detail: the chap in question in this case was born with only one hand. Until the catastrophic accident in which he damaged his spinal cord, he had managed pretty damn well in life: a successful businessman and a talented artist too. Now he was going to have to try and live in a wheelchair which he physically could not move under his own power. The last I heard, he spends hours every day just sitting in place, waiting for care staff to return to his house and move him about to enable him to eat, or get a change of view. (He did not get CHC funding, so is not getting 24-hour care.)
What these kinds of examples illustrate, we might say, is the cruelty that large bureaucratic structures can inadvertently impose upon people who depend on them. To be clear, I'm sure that nobody who works for wheelchair services wants these kinds of outcomes to occur. However, they have to follow the rules, or else they are at risk of being sacked. It is simply not up to them to choose not to follow the rules in a particular instance, just because doing so would be needlessly cruel to some particular individual. On the other hand, I would imagine that given that wheelchair services exist in a zone between the NHS and local authorities, given the utterly dire status of public finances in the UK right now, they are probably in desperate need of proper funding. My guess is that they are understaffed, under resourced, and overworked. This is a recipe for unintended, but real, bureaucratic cruelty, and it’s no surprise to find that it is exactly what’s happening. I thus therefore certainly would not be inclined to point the finger of blame at any individual who works for wheelchair services. This is a society-level problem. But it's one with very real consequences for individuals, like me, now living within this particular sort of iron cag.
(I could supply plenty more examples. Such as how I have now given up trying to get wheelchair services – to whom I was eventually successfully referred by the staff at Stanmore – to supply me with the right size cushion for my chair. This may seem trivial, but it's not. The longer I spend on the wrong size cushion, the more chance there is of me developing pressure sores. Pressure sores equal weeks, if not months, of bed rest, and in the worst outcomes, months in hospital following surgery. Because I'm desperate to avoid this, I've taken the hit myself and ordered my own specialist cushion. Price tag? A cool £650. If anyone is interested in getting into a business that seems astonishingly profitable, I recommend looking into supplying disability equipment. Much of it gets paid for by the state, and so you can charge pretty much anything you want. The taxpayer will pick it up.)
Due to the help of my parents, various volunteer organisations, and many members of NHS staff, I have been only minimally exposed to my new habitat of paranoia, of being subjected to cruelties because computer says no. But these are integral parts of the cage that I live in now, and so I'm going to have to get used to it – not least as I'm increasingly going to have to manage the cage myself.
All because I went a little bit too far right, when I should have stayed left, one sunny day in Scotland, thus travelling to a world that I was vaguely aware existed, but never imagined that I would actually have to live in. As the saying goes, it could happen to anyone. But I hope it doesn't happen to you.
"Imagine how much worse it would be for somebody who lacks my default levels of self-assurance and confidence; who maybe doesn’t know the intricacies of their medical condition as well as I do; who finds interviews stressful and intimidating?"
This is a very important observation.
I try to remember this: eloquence is a type of power that I possess, therefore it's incumbent upon me to speak, not just for myself but also on behalf of those who don't have the same power to clearly articulate things. That's just one of the reasons why your writing this Substack matters so much: you're speaking not only for yourself but on behalf of all the people who are in positions similar to yours, but without your eloquence and confidence.
Oof. It’s so dreadful, and also- none of this is surprising unfortunately, given the dire state we’re in nationally. I have friends and family also subject to the cruelty of the welfare state. The cruelty is the point. I hope things will change. I think as a country we’re past the point now where the idea of “benefits scroungers” is accepted by the general populous - because in one way or another, a large proportion of the population have become subject to this treatment - whether through lack of social care, lack of timely health care interventions, or simply lack of affordable childcare (who’d have thought legislating for provision but not taking steps to ensure it’s actually available wouldn’t be wholly successful..?). I’ve had two people very close to me go through experiences with DWP having to appeal their entitlement. One with a PIP - like you, he’s articulate and able to engage with the system better than average but even he struggled with months of oppressive bureaucracy before he was able to get before the tribunal to have his rights upheld. The other - a teacher signed off with significant mental health issues - was initially denied support benefits because when the assessor called, and the opening was “hello how are you?” the person replied with the standard greeting “fine thank you” and was so assessed as not suffering any ill health. Seriously. The only conclusion is that like insurance claims they know that if they deny as a first step many people won’t bother to appeal further because they lack the knowledge, time, resources and perseverance to enforce their entitlement. But this is not private business. This is rightful protection of the vulnerable in a civilised society. We all know that the public finances are supposedly dire. But let’s put this in perspective- we’re the 6th largest economy in the world and substantially smaller ones manage a better level of provision. Incidentally I think something like 80% of appeals against DWP decisions are eventually upheld.