In recent times, several friends of mine have had to take the dreaded dive into the not so wonderful world of PIP (Personal Independence Payment). I’ve already written about A Culture of Fear of which PIP is the greatest symbol, but this blog entry isn’t going to be simple replay of that rant.
PIP and other disability benefits come – understandably – with a good deal of paperwork. If you have a long term disability, you will very quickly be on your way to a black belt in form-filling as one organisation or another from both public and private sectors, causes you to have to give umpteen details on your conditions, abilities and skills. I’m not going to get into the crooked and weighted systems that so many of these forms and questions perpetuate, believe me, besides the blog entry listed above – I have a great many other rants about that – but the sun’s out and I’m not sure I want to spoil the mellow with the incandescence that writing about this government causes me to almost Pavlovian levels these days…
What I do want to talk about is how the reductionist nature of so many of these exercises, affects people with disabilities or long-term mental distress and what we may accidentally take away with us.
Firstly, having to fill out and answer questions on things like distances we can walk unaided, our ability to cook or prepare a meal, our ability to dress ourselves, manage our own care and therapy, or even in more invasive cases – how we bathe, wash or toilet – serve as part of a narrative that makes these questions and therefore our bodies, fair game in wider society. Consider the following questions:
- How do you go to the toilet?
- Do you use the wheelchair all the time?
- Is the person with you your carer?
- Can you have sex?
- Do you work?
- Why do you walk like that?
I think we’d all agree that barring some bizarre set of circumstances, these questions would be out of bounds in most public discourse. Yet I’m sure that disabled readers of this post will recognise all of these questions and will have been asked variations on many if not all of them. We live in a culture that still thinks it’s OK to ask these incredibly invasive, private questions of disabled people as a matter of course. The historically medicalised view of disability, combined with the fact that until recent decades, disabled people were simply not seen and kept in institutions, or put on show as circus exhibits has led to a particularly sick form of curiosity around disability that means that for someone like me, having to explain cerebral palsy, was something I was proficient in by my early teens. Not because I was especially bothered by disability, but because other people were. There’s a weird taboo around the physicality of disability, because there’s so much ignorance, and often the way that ignorance is broken and lessened is at the direct cost of another person’s privacy.
Secondly, it also feeds a relentlessly reductionist view of what disability is, and what it means for people. These questions are never framed in terms of whether we can still accomplish simple tasks but possibly by other means, but whether we can do them in the normal, abled way. Consider that in the PIP questions listed here we are asked if we can stand and move unaided – and for how many metres – 0, 50,200…First of all, who the hell measures the distances they walk? But more importantly, it gives an implicit message that the goal of this kind of mobility is to be able to stand and move unaided. Were it up to me, I’d ask the question in terms of how do you move 200 metres to a given destination? That way, if we’re answering a question in terms of mobility, we can speak in terms of what we do, how we manage, how we adapt, or how we are unable to complete a task either down to impairment, disablement or both.
Constantly giving away this kind of information can be a really negative experience. We are forced to recognise how much help and support we may need, and in our neoliberal culture of resilience, self-reliance and positivity – such things are very difficult to find a space for. It’s deeply problematic when asking for the help that you need, rubs up against a society that has such a ‘pull yourself up by the bootstraps’ mentality. It means that asking for support for things like mental health troubles, financial difficulties or disability services – feel like a concession of defeat – rather than a way to bridge gaps in opportunities for people. And once you have support such as carers, that do in fact bridge the gap – we’re still very aware that there is a gap to be bridged. You can still feel narked that you have to go the extra mile, or do the extra steps to achieve a societal normal – but good luck finding that message anywhere. Don’t worry, people will tell you that “there’s nothing wrong with asking for help”, this is of course true, but it’s almost always said by people who themselves need very little help. And if asking for that help means having to reflect on a loss of ability or independence, that can be a bitter pill. Especially if that loss has an element of permanence about it. We’re being put in a catch 22 situation, where we’re simultaneously told to accept help, but also that independence is key.
And that is an incredibly fine line.
Reflecting on how many forms I’ve filled out over the years, a few things stand out to me.
- How many of them seem to have no concept of what is relevant or appropriate to ask a disabled person
- How none of them appear to have been signed off on by any kind of disability group of experts with lived experience
- How an emphasis on certain tasks, such as walking, feeds a view of disability treatment often for it’s own sake, rather than for the betterment of the patient.
- How they feed a culture that makes it OK to invade disabled people’s personal space and autonomy
- How disability is seen as a monolith.
This last one is key. Disability and mental health issues fluctuate. As someone with cerebral palsy, the amount of energy I have to use to complete tasks like walking, cooking, or merely standing changes from day to day. Yet if you’ve ever filled out a form on any kind of medical matter in the UK, you’d assume that the trajectory was steady and possibly plateaued or permanent. It doesn’t work like that. This is the core of the reductionism in the system. Any disability group worth their salt will tell you to fill out the paperwork for a ‘worst-case scenario’ – because to do anything else, would be to suggest to an assessor that everything was manageable. But the next day, someone who was up and about might feel unable to move – a perfectly usual experience for many with certain conditions, but how do you tell someone of that variance and trust a system to see those shades of gray? As policy has become increasingly black and white in recent years, there has been an overriding sense of cynicism from many disabled people. The very fact that whatever the next DWP scandal to break is, will in all likelihood fail to surprise anyone with a disability much at all – is telling.
We are put into boxes in these exercises, and we are denied our experience, subtleties and freedom of expression of what life with a disability really is. Because the abled world, sees disability not as personal and varied, but as mild, moderate or severe.
And that is not good enough.