Where’ve I been? Getting ATOS-ed, that’s where

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.

Benefits Update

A full 16 months after I applied for ESA, I’ve finally got an answer. I’ve been put in the Support Group which basically means that I don’t have to work or seek work because I am too ill and disabled to be reasonably expected to try to find work that I can feasibly do and employers willing to make the many, many adjustments that would be required to make that work accessible to me. After literal years* of financial insecurity due to disability and ill health (including times when I had no money of my own) I finally have something resembling security – money to replace the employment I cannot be reasonably expected to seek or find until and unless I get much less ill (unlikely to happen as my physical illness is chronic and incurable and my mental illnesses are chronic and not responding all that well to treatment) or society gets MUCH, MUCH less disablist and much, much more inclusive and accessible (more likely to happen but still years away). I view it as somewhat akin to compensation – money to live off in recognition that between my body and the society I live in paid job opportunities for me will be close to non-existent but I still deserve to live a good life.

So, what now?
I’ve bought quite a few things lately that I’ve not been able to afford for a very long time – a mobile phone that actually works, a winter coat, new shoes, a Blue Badge and a Disabled Person’s Railcard. It feels odd both to have these things and to know that I can buy such things without worrying about whether I can also afford to pay my rent. This security is unfamiliar to me, I find myself still acutely aware of when each payment is due to come in and when my rent and direct debits are due to go out.

As I don’t need to look for or get a job, I’ll have a lot of free time. I’ll definitely be blogging and I’ve got some great ideas for posts lined up. I’m trying to get back into reading regularly and I want to write more fiction. In fact, I have the slightly ambitious aim of writing the first draft of a novel this year (I’ve written novels before but not since my teens). I’m also looking for very, very part-time volunteer activities in Manchester feel free to contact me if you’ve got an opening you think I could fill 🙂

In the medium term, I’m on a few NHS waiting lists to hopefully get some treatment for my my mental illnesses. I don’t expect to be “cured” but there’s a lot of scope for improvements in managing my illnesses and maybe even reducing my symptoms. A man can hope, right? Learning how to make a phone call without breaking from fear and panic, for example, would greatly improve my life and it’s a goal that is ambitious but (I hope) achievable.

Even longer term, I want to be a parent. I’m hoping to be on the adoption register as a potential adopter before I’m thirty. In order to get there, I’m going to need a few things I don’t have yet: a permanent home with at least one spare bedroom, more local friends than I have now, possibly a wheelchair and/or a service dog. I’m not hugely sure how to go about getting these things sorted but not having to worry too much about continuing to afford to eat and pay rent frees up a lot of time and energy for planning the little steps to the bigger goals. And I know what my big goal is: to be a good parent to at least one someone who didn’t get a great start in life.

So, that’s where I am. Right now I’m still pretty poor compared to most people but I don’t have to worry too much about it any more cos (for now at least) I know that I will have a regular income and that my rent will be paid. This means I can concentrate on other things. Which is something I’ve not been able to do for a long, long while.

*I’ve been trying to apply for DLA / PIP and ESA since 2011, the present year is 2015.

I write best when I’m hurting…

TW: this post discusses social care, “reablement” services, mental illness including self-harm and suicidal ideation and institutional neglect and abuse of disabled people, particularly of me. Stay safe and don’t force yourself to read it if it could harm you.

I sometimes feel I write best when I’m writing about what hurts me. This blog is full of post about my experiences of living with chronic disabling illness and of living in a world that reminds me over and over again that people like me – whether that’s disabled people, trans people, Jews, LGB people or unemployed people – are not wanted or welcome. I write about what hurts me.

I’m hurting right now and haven’t posted in almost a month. What’s happened?

I am being harmed. I am being abused. I am being… “re-abled” by social services. And they’ve decided i don’t qualify for on-going care. That means my care hours, as of tonight, will be cut to ZERO and any care I need I will have to organize and pay for myself – if I survive long enough to sort something out. (My friends and partners are not going to let me die so don’t worry too hard but I basically cannot be safely left alone for more than three DAYS without completely giving up on caring for and feeding myself. An otherwise identical person with no local friends would be dead or hospitalised within a month with malnutrition. I really wish I were exaggerating here).

For the majority of people who’ve never heard of it or had to go through it, “reablement” is an up-to-six-week long assessment period in which care is provided to a person and (in theory) they are given the equipment and support they need to look after themself. On paper, it looks like sort-of a good idea BUT in reality, huge funding cuts mean people aren’t being given as much equipment as they need, are fighting hard and waiting weeks to see that equipment and are being assessed as needing (as I do) about 5 to 6 hours of care a week THAT THE COUNCIL THEN REFUSES TO PROVIDE OR PAY FOR. And even if all the equipment I could benefit from were provided to me, even if I were given my five hours a week ongoing care to keep me alive… the process of reablement is still neglectful and abusive BY DESIGN.

The people sent to support me were deliberately and secretly instructed NOT to help me and to push me to do things by myself. My every morning wash and evening meal was secretly turned into a battle of wills between me, an exhausted mentally ill person in a lot of pain and a carer / support worker who was often meeting me for the first or second time. They pushed me further than I should safely be pushed and they pushed me every day. And I capitulated and forced my pain-filled exhausted limbs past my limits daily *because when I am scared or upset, my PTSD makes me extremely compliant*. I repeatedly tried to explain to both carers and my assessor that I am exhausted and in pain and vulnerable and that whilst I often physically *can* make myself a meal, I usually really, really *ought not to do*. I tried. My concerns were frequently ignored and now I have no care, not all of the equipment I was promised and a fight on my hands to stay in an abusive system in the hopes of getting less than a MP’s meal allowance a day spent on keeping me alive and healthy enough to do anything at all beyond surviving.

My depression and PTSD have been getting very bad lately and is it any wonder? I’ve been seen by carers and by my assessor in tears and self-harming. I’ve had to get friends to help me in the last few weeks because several times a day I think in all seriousness “I want to die just so all this stress and abuse will end”. Things are literally that bad but for the sake of a few quid the council would apparently prefer to let me try to look after myself alone.

And it all links back to the questions on the PIP and ESA forms that apeear in my letter box at irregular intervals and the number of different GPs who’ve happily signed my sick notes yet the DWP still want to get Atos or Capita to assess me in case all 6 GPs were wrong and the comments of the likes of Lord Freud who thinks people like me shouldn’t be paid minimum wage but also shouldn’t be able to live off benefits… it all comes down to having to fight and plead and abase myself daily to show that I deserve to live. It all comes down to narrating over and over and over again how my illnesses and disabilities affect me and how many doctors I’ve seen and getting professionals to write down exactly what I just said on pieces of paper that other professionals may or may not take into account… Will I be deemed worthy, fit for life, this time? And if so, for how long?

How I’ve Been – What Applying For Benefits Is Like

TW: Frank discussion of worsening mental illness, ATOS

Hello readers,

It’s been a little quiet around here for a while and if you follow me on twitter (I’m @autistliam) you might have an idea why. I’ve spent the last few months trying to find out what is happening with a claim for disability benefits I made over 6 months ago, whilst at the same time trying to fill in the forms and provide evidence for two more benefits I’m eligible for *and* manage my social care *and* get to all the doctor and hospital appointments I have to go to *and*… well, and have a life. I have friends and family and lovers to spend time with, books to read, films to see…

And because of the horrific bureaucracy I’ve found myself having to grapple with, I’ve had to do all that whilst living on less than £25 a week, perpetually wondering whether this is the week I’ll hear good news or whether I’ll have to ask my Uni for yet another crisis loan just to keep myself fed. It turned out that this week was finally the week that I have been awarded PIP – Enhanced Rate Care, back dated to cover most of the time I’ve spent living on as little as possible. It’s a relief to finally have it (even though I need to appeal the decision NOT to award me any Mobility payments) but it doesn’t really make up for what I’ve been put through.

It’s been a whole year since I started filling out a DLA form that took me five months to complete, working around my postgraduate degree and around treatment for my yet-to-be-diagnosed chronic illness. I sent that form just ahead of the deadline for the PIP change over but the DWP decided that I would be assessed for PIP anyway – for their convenience, not mine. They sent me a new form and just four weeks to fill it in. Overtaken by stress and despair, I considered killing myself and started self-harming after not doing so for months, saw my GP and was put onto antidepressants and considered quitting my degree but thankfully opted instead to take a year out. That was in May, I’ve been signed off as too ill to work since then but as I never had a job in the first place my sicknotes don’t get me any money. I managed, somehow, to fill in and return the PIP form – complete with over 12000 words of additional information and several sheets of evidence, within the four weeks they asked for. They never acknowledged receiving the form. I next heard something in July, when I was asked to attend an assessment with ATOS on the fifth of August. I arranged for my partner to be available to take me to the assessment and stay with me. I survived the misleading questions and attempts to catch me out in an over two hour long assessment – during which I had a small meltdown, was asked simple arithmetic questions, had my sight in both eyes tested after explaining that I can only use one at once and was asked to explain what triggers my PTSD and why and how often I harm myself and how often I consider killing myself.
After that, I heard nothing for a month. I had no money coming in and had to ask my Uni to loan me a month’s rent in order to have anywhere to live. My advisor phoned the DWP. ATOS had not sent them a report about my assessment yet. Try again next week.
That was early September. Since then, I’ve been trying again next week *every week*. The Uni has given me two more loans to keep me housed and fed. ATOS took seven weeks to get my assessment report to the DWP. They didn’t tell me they’d received it. It took almost another month before they looked at it and made a decision. They didn’t tell me about that either. I found out today by having my advisor phone them to ask them whether the £1600 that had appeared in my account was actually for me. Apparently it is.

The last year hasn’t quite been Hell (I’ve seen Hell and it’s much worse) but the precarity of always being told that things will be okay soon with no clear idea of when “soon” will be is certainly torture. My mental health has been affected and I have needed to start antidepressants, needed to ask friends to help keep me alive by making sure I eat or by sitting with me when I’m struggling to keep myself safe. I suddenly have some money and an income and can afford to eat better and to buy things but so long on less than £25 a week has made me forget what I even wanted.
I suspect it was to replace the clothes that I have worn through. Perhaps it was to eat in my campus bar every now and then or maybe to buy more than one drink at the pub. I need to replace my passport and haven’t been able to afford to.

Before all this, I was doing an MA and considering volunteering or part time work. Right now, I am doing neither as all my energy goes towards trying to sort out my benefits, social care and health. Being too ill to work is a full time job in itself.

This ordeal has changed me. It’s not been as hard as it would have been if I were not a student, I’m very grateful for help received from University Welfare Services, friends and partners and hundreds of supportive people on twitter. I hope to get my life back on track soon, I’m going back to Uni properly in May and I hope to have my PIP, ESA and Housing Benefit sorted by then. If things are sorted soon, I’ll look into volunteering.

In the meantime, I’ll try to write. I have been so scared to write this, so worried that somehow it would affect the result if I wrote this blog post before getting my first payment.

EDITED TO ADD:
As this blog post is going much further than I ever expected it to, I’d like to clarify some things that I didn’t make wholly clear.
Firstly, PIP is a benefit you can get whether you work or not. The out-of-work benefit for UK disabled people is ESA and I’m currently filling in the form for that and will have to have *another* ATOS assessment in the next three months for that.
Secondly, the people who told us repeatedly to “try again next week” were *DWP and ATOS staff*. They told my advisor every week that I’d get a decision the next week – for over two months.
Thirdly, without my advisor at the Uni phoning them for me I would *never have heard anything* from the DWP between August and now. And I would have no money to afford to phone or write to them either.
Finally, I just want to repeat that I have had fantastic support from my Uni, my friends, my partners and my doctors. Other people *will* be facing this alone and we need to find ways to find them and help them.

PTSD and Disclosure

Rather than continue with the demoralising and exhausting task of writing down all the little things i struggle with for my Disability Living Allowance form, I’m going to put it aside for the night and write a blog post that’s been going round my mind for a week or so.

I have Post-Traumatic Stress Disorder and I’ve been fairly open about my diagnosis since about six months after I received it (prior to that I kept things between myself, my therapist, my girlfriend and some carefully chosen close friends). If I feel up to it, I will describe how my PTSD affects my life, how I cope with it and even what it was like at its worst. I can and will talk about what it’s like because I know that there’s a heck of a lot of other people quietly going through the same thing and *someone* has to be willing to talk about it and that might as well be me.

There’s something that I don’t talk about though as a rule. I don’t answer any form of the question “What caused your PTSD?”

Unlike most other mental illness, PTSD is caused by and about something that happened to a person. Depression typically isn’t “about” anything at all, it just is. Anxiety can come out of nowhere. But PTSD is an illness that means that at some point in your life something awful has happened to you, typically something that made you feel like you were going to die. An event or multiple events that either snatch away suddenly or slowly erode your sense of being safe and leave you with the feeling that you will never be safe again – that’s how you end up with PTSD.

So, people are curious. And I sort of understand that. But. Please, please if someone you know discloses to you that they have PTSD do NOT ask them “What caused your PTSD?”. Don’t ask “How can you have PTSD?” or “Why do you have PTSD?” or “How did this happen?”.

Just don’t.

Got that? Don’t.

Even if you are really close to that person. Even if you’re shocked. Even if you can’t think of anything bad that ever happened to them. Do. Not. Ask. What. Caused. Their. PTSD.

If they feel able to tell you, they will. If they want to tell you, they will. If you really need to know, they’ll tell you.

It takes a huge amount of courage in our society to admit to struggling with mental health problems at all and PTSD is a particularly difficult mental health problem to disclose for many reasons. Not least among them is that PTSD itself can make trusting people incredibly difficult and the fear of perhaps having to say out loud what happened to cause it and risk triggering a flashback. There’s also the fear of not being believed – a significant and loud minority of people think PTSD is a “made up illness” invented either by people who wanted to claim disability benefits or by drugs companies in order to sell more pills. Then there’s the shame – the feeling that your past shouldn’t still be affecting you after all this time. It takes bravery to say to anyone “I have PTSD”.

So, if someone tells you about their PTSD please remember they’ve thought about it for a long time and decided they want you to know. During that thinking time they’ll likely have thought about how much they want to tell you about the cause(s). They may have decided, as I have, that you don’t need to know.

Asking puts people in the difficult position of either refusing to answer a direct question or giving you sensitive information at a time when they feel vulnerable, scared and disinclined to trust people.

So; I’ll turn this round on you. Why do you want to know?

  • You’re just curious / just making conversation. That clearly isn’t as important as making sure the person with PTSD feels safe. Try saying something supportive instead like “That sounds very hard for you. Is there anything I can do to help?” or “Would you like to talk about it?” or even “I’ll make a pot of tea”
  • You want to help and feel you’d be more useful if you knew exactly what you were dealing with. See above for ways to help. The person with PTSD is better placed than you to judge how much you need to know. Ask specific questions like “Would you like me to read reviews of the film before we go? What kind of content might you need warnings for?”
  • You don’t believe them because you’ve never seen or heard of anything *really* bad happening to them. First off, it’s close to impossible that you have actually been with this person every second of their life unless you are their conjoined twin – and even conjoined twins could have been affected very differently by things that happen to them. Lots of things could have happened while you weren’t watching or you may have misunderstood the significance of events that happened while you were. If you don’t know what the bad thing/s is.were, then perhaps the person has deliberately kept them from you. They have the right to do this, to protect you or them or someone else. You don’t have any right to this information until and unless they want to tell you. If you’re surprised say something like “This is surprising news. I thought you were okay / I knew things were bad but didn’t know things were this bad” or stick with being sympathetic and helpful – even if you don’t believe it. It’s better to assume they’re telling the truth than accidentally confirm their belief that they can’t trust anyone and should keep these things to themself.
  • You’re worried that something you did caused this. That worry can wait. Be sympathetic and helpful or excuse yourself if you can’t. I understand the worry but it’s not a question for the first time someone talks to you about their diagnosis.
  • You can’t think of anything else to say. Be honest and say “I don’t know what to say”

What I want you to know about PTSD before you encounter someone else with the diagnosis – especially someone newly diagnosed – is that you need to trust them to work out what they want to tell you and when. On their terms, not yours.

My terms involve not telling most people what happened. My own family don’t know what happened and I intend to keep it that way until and unless it ever feels appropriate to actually tell them. Your terms or your friends’ terms may be different but that’s ultimately up to each person living with PTSD to decide, not the people around us no matter how they know us.