Unboxing the Assessments

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.

  1. How many of them seem to have no concept of what is relevant or appropriate to ask a disabled person
  2. How none of them appear to have been signed off on by any kind of disability group of experts with lived experience
  3. 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.
  4. How they feed a culture that makes it OK to invade disabled people’s personal space and autonomy
  5. 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.

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12 thoughts on “Unboxing the Assessments

  1. You may be giving some people the impression that the PIP form asks “how” you go to the toilet and “if you can have sex”. It doesn’t!- (or at least it didn’t for the three people I’ve helped with it in the last couple of years). Maybe your GP or someone else is asking these questions, how would I know, but they are certainly intrusive and private and you can always say, “None of your business” and they would back off. The PIP form is certainly long and boring, (and would probably be livened up a bit if it did have a few questions about sex)- but the level of detail, “How far can you walk unaided?” “Do you use a stick/walker?”, “Do you need help to use the shower/bath?) is there to give a realistic idea of your needs so you can be assessed for the grant. All three people I helped with it got the grant, and find it helpful: one to buy visual e-aids so she can read small print and see her computer screen, another for a stair lift so she can access her own bedroom again, and the third is using it towards carer help. Good luck with yours!

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    1. I’m not purely talking about PIP – it’s merely the biggest exemplar of the kind of question.

      I’ve done PIP – it is something I’ve received for over 3 years now…that is neither here nor there. The point is that these questions, and the medicalised nature of the dialogue means that these inappropriate questions become fair game.

      I suggest you read the Culture of Fear piece to get a sense of my feelings on PIP – but if you would like a little taste, consider that thousands of people have lost Motability vehicles and that the appeal success rate for PIP cases is around 65%. And those are just the cases for those with the energy and resources to appeal. It’s a broken, vicious system by a government that doesn’t care.

      Thank you for reading – but if this was what you took away from this blog, then you missed the point.

      Liked by 1 person

  2. I forgot to say the form does allow for variable conditions- dementia, for example, comes and goes (My Dad is great in the mornings but much less lucid when he wakes from his afternoon nap), visual impairment may be susceptible to bright sunshine or darkness, arthritic conditions most painful in cold weather..etc. As I remember it, the form allows for changing conditions, e.g “How many times per week? per month? When was the last time you?…” and you can add comments at the end too. By the way, I am not responsible for composing it myself and nor is any member of my family! It’s boring and bureaucratic, but so are tax forms, pension applications and everything else on Gov.Uk. It’s not personal, it’s just civil servant-speak.

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    1. Boring and bureaucratic, yes, but also reductionist and monolithic, as described above, traumatic to fill in, unclear, full of unstated assumptions and definitions, focused on physical problems more than mental/cognitive/LD, and they leave out a lot of things that we think are really important.

      As a disabled person with chronic pain (which limits mobility) and complex mental health problems, I find filling out the forms traumatic, and so do many others. I focus on what I can do, not what I can’t, because to do otherwise is very depressing. “Hey, I’m out, at a restaurant, with people! Woo!”(despite high opioid intake, subsequent back spasm, etc.) The last time I filled in the form, I was in tears. I’m 43 years old and and I can’t even cook myself a meal. This is my life?” I ended up in a massive depressive episode and considering suicide. Having to list all the things you can’t do, often with help from others (humiliating), is really traumatising especially when you know that soon you’ll have to say those things to an uncaring, likely adversarial assessor.

      Unclear: For example, my last form was a review form. I assumed that they’d be looking at my original form as well, as the review form just asks if things have changed. Nope. Very often they only get your review form, and we should treat that form as an entirely new application. It doesn’t say this on the form.

      Unstated assumptions and definitions:
      Example for question 3 for PIP, about preparing and cooking a meal: Can you prepare and cook a simple meal unaided?
      Most people just answer the way one normally would, not knowing that there are a bunch of things unexplained, which you only find out if you go looking on the web or get (experienced) help.
      They assume you already have the food, whether or not this is a problem for you, and that it is out on the counter.
      Prepare: Cutting things up? Opening packets? Does it include soaking something for a few minutes, or filling a pan with water and putting it on the hob? What about turning on the job?
      What is a simple meal? Ah. It turns out it’s a 1-course meal for 1 made from fresh ingredients. Leftovers, prepared, and ready meals don’t count.
      What does “cook” mean? It doesn’t include using the oven (or anything below waist height). Microwaves count, but not if you’re just warming stuff up.
      What does “unaided” mean? If you need to sit on a stool, that’s an aid. If someone hangs out with you and makes sure you don’t forget and burn your food, that’s supervision (which is aid).
      If the person judging your claim thinks you could do the action if you had an aid (say, a perching stool), even if you don’t have one, even if your kitchen is too small to fit one, they’ll score you as being able to do it using an aid.
      They don’t ask if you could cook another meal later, or if cooking a meal would leave you bed-ridden for days, although they do mention “reliably” and “safely”.
      Etc

      Mental/physical:
      For a lot of people,it isn’t at all obvious how to talk about a mental health problem in the context of the questions. Again, many need experienced help or have to go online to find out. For example:
      Andy gets severe depressive episodes which land him in bed for days at a time. He can’t do much at all, and spends most of his time staring at the ceiling. How does that fit? Well, if he can’t bathe or change clothes for a few days because he doesn’t have the motivation, he should talk about it in those questions. If he doesn’t eat, he should talk about it in that question. Obviously he wouldn’t be able to cook, or mix with other people, so it goes in those two questions as well. Does he still pay important bills when depressed? No? Handling money.
      What if Andy can get himself to the kitchen and make something to eat, but forgets to turn off the burner, or leaves out an ingredient?
      Many people just leave mental health out altogether.
      It leaves out things that claimants have a lot of trouble with, and spend a lot of money on. Have to take a taxi home when anxiety strikes? Not interested. Can’t keep your house clean? Feh. Live in filth. Can you answer the phone? No? Why?
      Etc.

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  3. Just got your reply. Clearly you are very angry and upset, but you did mention the PIP form. I don’t think an entire government can be “vicious”, it’s just the way it comes across when so many people feel neglected and sidelined, and I agree that’s how it feels to a lot of us, a lot of the time. I think these long forms are a result of series of committee-decisions, and certainly created in a climate of cuts and suspicion about welfare-cheats. Windrush though- yes, that was vicious! Glad she went!

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    1. If you think Windrush was vicious and the DWP way of dealing with disabled people in the current administration is not, then I suggest you read further on what the DWP is doing, how much they’re spending to cover themselves – and how they consistently lose in court.

      Not vicious? Guess again.

      Liked by 1 person

    2. The treatment we receive is vicious, whether they mean it that way or not. This is the same thing as Windrush, except that instead of being wrongly deported (horrifying) we’re wrongly deprived of the means to eat, pay bills, pay rent, get to appointments, etc. Even when you get it back at tribunal, you’ve spent (in my cases, 5 – 14 months) without that income. I borrowed thousands, cut back on food, and the stress was intolerable. Being assumed to be a faker/cheat/criminal is awful. Being told that you are is worse. Having someone deny the health issues that make you need benefits is intolerable! Even when we get the benefits,you can be reassessed anytime except the 3 months after your last award. We worry constantly: Will my entire world be upended? Will I end up sectioned again? That sounded like a heavy envelope – please not from the DWP oh god. There’s no security, no assumption of innocence, constant reminders that they don’t care if you live or die, humiliation, destitution… All of this is weighing on you while you fill out that form.
      For tens of thousands of people, this is life. How is that better than Windrush?

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  4. You’ve brought up many issues I’ve faced myself with people/processes in my life as my chronic pain has increased over the last several years. I personally agree with you on society’s hypocrisy about these issues around asking for help. (Some) Bystanders feel entitled to interrogate and punitively interfere – especially when I’ve been the most impacted by pain and barely able to function. Generally the assumption is that I (or someone else) am faking, seeking attention, incompetent, or worse.
    Many people in our society still want to assess everything with extreme black-and-white thinking and disability is much too variable and individual for that.
    And yes – some people are absolutely vicious while others hide behind a façade of “just trying to help”.
    Thanks for bringing up these conversations. It makes people uncomfortable to face social biases and injustices. It violates their “belief in a just world”. But it needs to be done. Not everything gets addressed by making a “vision board” or reciting platitudes.

    Liked by 1 person

    1. My Dad told me to just “push through the pain”. Yup. Scar tissue constantly running on my spinal nerves at L5/S1, and my left sciatic nerve. Back spasms that twist my body. Yeah. Argh.

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