This will be a short post but I think a surprisingly necessary one.
I have a piece of advice for everyone filling in PIP and ESA forms:
If you have access to a computer YOU CAN TYPE ALL YOUR ANSWERS OUT, SAVE IT AND PRINT. The form makes it look like you have to handwrite your answers onto the space provided – which is not only difficult and painful for many of us, it also makes it difficult to retain records of what your answers were.
If at all possible, type (or have another person type) out your answers to the questions.
Put your name and National Insurance number on the top of each page.
Type “Question 1” next to the answer to question 1 and so on. Use subheadings, underlining and/or ALL CAPS to mark particularly important bits (I usually put “All references to pain are to pain levels experienced when I take all of my medications, not pain experienced if I do not take them” in all caps).
Number the pages.
Save the document and back it up (to a USB, email it to yourself, add it to a cloud backup service) then print a couple of copies when you finish it.
On the form itself, answer the tick box questions and write “See attached notes” in every write-in box.
Put the form, any photocopied evidence you are sending and the printed out answers into the envelope provided (or send it recorded delivery in the envelope of your choice). Once, I couldn’t get everything to fit in the provided envelope so I put everything in a larger envelope and taped the freepost envelope to the front of it. This worked.
Next time they send you the same form, save another copy of your answers (use “save as”and change the name to something like “ESA answers 2” or copy and paste the whole document to a new document and name it something different from the first). Look over your previous answers, add any new stuff that’s come up, take out or change anything that’s no longer relevant. Once you’re happy that it’s fully accurate and up to date, print out two copies, save a back up copy, write “see attached notes” on all of the form… You get the idea.
If you had to get another person to do any of these things for you: ADD THAT AT THE END OF YOUR ANSWERS. If you can’t write / write much / write legibly ADD THAT. Otherwise they’ll assume you can write hundreds of words and have only chosen not to.
It’s YOUR form. You don’t have to force yourself to handwrite it just because it’s a paper form. You don’t have to write inside the boxes or shorten or lengthen your answers to fit into them. You need to give the DWP assessor enough information to assess you properly and you need to do it in a way that causes minimum harm to you in the process.
I realise I’ve not written here in about a month, quite possibly the longest pause in my blogging since YetAnotherLefty came into being a little over two years ago. I (perhaps vainly) imagine that my readers have been asking themselves where I am and when I’m going to get round to writing something again and while I don’t really owe you guys anything, I feel an explanation is due.
Quite entirely simply, the explanation is “I got Atos-ed”. Again. And it was humiliating and triggering and awful and it harmed my mental and physical health. Again.
I want to try to go into that and expose what it’s like to claim PIP and/or ESA (the two kinds of social security / benefits payments offered to disabled people in the UK). Every person I’ve described the process to in real life has been horrified. Sometimes I wonder if people just don’t know or just don’t WANT to know how their friends, family, neighbours who are disabled are being treated. I know people don’t want to think that it could happen to them – when the various changes to disability benefits in the UK started, I was CONVINCED that they were not relevant to me or to anyone I knew. I was very, very wrong. The illnesses that cause me constant pain and fatigue had already begun. The disabilities I’d lived with from infancy should have got me DLA/PIP if anyone had thought to apply.
For both PIP (a benefit that most disabled people qualify for and that is for people who can work as well as people who can’t) and ESA (basically a replacement income for those too ill or disabled to *seek employment*) you first have to obtain and fill in a paper form. On that form, you will be presented with lists of tasks and the option to tick that you either can or cannot do those tasks. And then you’re expected to write in minute detail exactly WHY you can’t do the things you can’t do and how much help you need and why you need that help and exactly which symptoms of exactly which condition(s) prevent you from doing the thing. For EVERY. SINGLE. THING that you can’t do. There’s about thirty pages to the form, and four or more tasks on each page, many of which have subheadings.
It’s a lot of writing, especially if this is your first such form. Oh, and the space to write in is tiny and they don’t actually tell you that you need to detail the whys and hows of every last thing you can’t do without help.
And then they make you back everything up with letters from doctors and carers and social workers and anyone with a title regardless of whether or not they’ve ever seen you at home.
And then they usually still insist on a face to face assessment. Which amounts to meeting a stranger who’s been given a Cliff Notes (think literal bullet points) version of what you wrote on the form in the first place and then questions you in detail about all your conditions and all the things you can’t do and precisely WHY you can’t do them, give examples of times you couldn’t do this, what would happen if you didn’t have the help you have, but WHY does X condition mean you can’t do Y task? how come you can do P but not Q?… the form all over again but with another person asking the questions and not especially caring about being sensitive or kind (in my last PIP assessment, I think we spent a whole ten minutes talking about my bowel and bladder problems and at least 20 on “But WHHHY does severe anxiety prevent you from mixing with people and going to new places on your own?”).
And then based on a report about the face-to-face (including, no joke, comments on whether or not you “looked anxious” in the waiting room) your medical evidence and the damn form, a complete stranger who you have never met, who has never observed you in person, decides whether or not you’re disabled/ill enough to be given a small but often life changing sum of money.
And I think readers of this blog are probably vaguely familiar with all of the above. I needed to spell out the background because what upsets me most about this whole charade, what explains why I become hazy and distant and slightly more mentally ill immediately before and a short while after a face-to-face assessment or a frantic couple of weeks writing the damn forms (every three to six months I have to do one or the other as I get both PIP and ESA)… is the effect this has on my (and likely others’) sense of self, my identity.
The forms and the system reduce me to a list of “I can’t x without y help because of p,q,r symptoms of z condition”. I experience my life – and my self – as a series of events caused or explained by my inability to do things. My brain processes experiences as potential examples for the damn forms and assessments. I feel like a fraud if I decide to take the pain and the consequences of doing something I really really ought not to do. I feel guilty about spending money because at any moment a brown envelope and a few strangers could take all my money away. I worry about that one picture of me on Instagram where I appear to be standing unaided with a baby in each arm – I know the reality is that I’m seated on a stool and there are two people just out of shot ready and waiting to take one or both babies from me as soon as the photo is done – I still worry about what it looks like.
The logic of the form – that one should be able to work and if you aren’t you better have a detailed explanation of precisely why – permeates my brain. I over-explain why I can’t or won’t do things to friends and strangers who would happily have accepted “I can’t” as its own reason. My depression latches onto things that I can’t do that someone my age “should” be able to do. I feel ashamed and scared to admit that I am “on benefits” and likely will be for the rest of my life.
On my “good days”, my depression and anxiety still interject to make me question if I even “deserve” to get paid to not-work (because anything even remotely like full time work would seriously harm me) and if my more expensive or frivolous purchases are justified given I don’t “earn” my money. On my bad days, lying in bed, my brain idly writes new paragraphs for the damn forms.
The system for getting these payments leaves me constantly thinking about what I CAN’T do and why. That can’t be good for me but I can’t stop it. A few more years of this and I imagine it will become a permanent subroutine in my brain, figuring out what I can’t do, what help I need, why I need help, how seriously I’d be harmed without help.. a huge portion of my brain forever ruminating on something that doesn’t help *me* at all. When I could be thinking about my writing or learning or having fun or…
So that’s where I’ve been and where I’m at. The DWP are basically inside my head and critiquing my every action. And it hurts.
And yet… until the system is fixed, I still advise disabled friends to consider putting themselves through it. Because the money maybe a modest sum but it’s LIFE-CHANGING. It means I don’t have to worry about affording a meal in a cafe or a takeaway when I can’t figure out all the steps to making my own lunch. It means I can get a taxi if I need to. It means I can pay bus fare for a friend to accompany me to a scary new place. It means I can afford food that isn’t beans. It helps but making it happen hurts. Possibly permanently. It’s a bind and I respect the choices people make about whether or not applying for PIP, ESA or both will be “worth it” for them.
I’ve got a few spare minutes so I thought I’d write a quick post for Blogging Against Disablism Day 2014. There are other posts I want to write about disability, gender and fashion, about internalised disablism and about the questions strangers ask me when they notice that I am a disabled person. Those can wait.
Today I have only a few minutes and one very precise thing I want to write about. And that’s the difference between how people who aren’t disabled seem to conceive of disability and what being disabled is actually like.
Other people seem to think that for any and all “abilities” people can either do them or they can’t. So either you can walk perfectly well or you can’t walk at all. You can either talk or you can’t. You can either see properly or see nothing, you’re either hearing or profoundly Deaf. You’re permanently on the edge of seriously harming yourself or you’re completely fine. You can be easily sorted within seconds into “disabled and thus completely unable to do anything” or “perfectly capable of doing any kind of work without any real difficulty”.
A LOT of disablism seems to rest on this idea which looks very obviously absurd to anyone with any direct experience of being or living with a disabled person yet this idea seems to me to be widespread. Even the draconian implementation of the Work Capacity Assessment here in the UK seems based on this strange dichotomy of “you can either always do something or always not” and “you’re either fit for all kinds of work or none at all”. When people call the fraud hotline because they’ve seen a neighbour walk from their car to their door when they use a wheelchair or scooter to get to the corner shop, their disablism is based in the idea that people can either walk or they can’t and that anyone who can walk can work (btw, if you find me a job that literally only involves walking short distances a few times a day, message me :P).
The reality of disabled life is very different. There is no neat split between “Things I can always do” and “Things I can never do” – almost everything is inbetween. Almost everything is something I can do sometimes under some conditions. Some days I might be able to walk half a mile using a walking stick, other days I literally cannot get out of bed. Under the right conditions and with appropriate supervision, I can cook a meal for six people from scratch. Most days however, I need another person to come in and cook for me. I’m happy and confident and I love my life *and also I’m very mentally ill and in serious danger of neglecting and/or harming myself*. These are not contradictions. This is my reality and that of thousands of other people.
Disablism seeks to reduce me to a list of things that I always cannot do (and there are plenty) and proclaim me able to do many things on the basis of my ability to do them once or twice a year. The reality is more complex and diverse than that. I live in the space in between “can” and “can’t” and if non-disabled people ever really thought about it they’d realise that *they do too*.
I don’t know if I’ll be able to both write something for BADD *and* do my essay and I’m prioritising my essay. HOWEVER, I know that some years I didn’t participate in BADD because I didn’t have a blog or because I wanted to say something anonymously and didn’t have somewhere i could do that. Some years, other people kindly allowed me to post on their blogs so this year I’m offering to do the same.
If you’ve got something to say against any aspect of disablism (prejudice and discrimination against disabled people) from the perspective of any kind of disability, from anywhere in the world and you don’t have a blog to say it on, I offer you here. Message me through my contact page or on twitter *before* the first of May and I’ll try to set your words to be guest-posted on yetanotherlefty on the 1st of May.