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?

Access needs – not what people seem to think they are

So, unless you’ve genuinely never come across disabled people’s activism before, you probably have a vague idea that there are different models of disability and a rough grasp of what the Social Model of Disability is. I’m not going to assume any prior knowledge here so consider the first part of this post to be a quick intro / catch-up lesson on the Social Model. Skip intro.

Two Models of Disability

There are more than two models of disability that people have come up with but there’s two directly competing models which underpin most people’s ideas of what it means to be disabled. Whilst no one actually thinks that any particular model is exclusively right for all disabled people all the time, to a certain extent you can tell what model(s) a person has internalised from what they say about and to the disabled people they encounter.
The two models that underpin most people’s thinking are:

  • The Medical Model – disabled people are disabled because they have bodies and/or brains that do not work properly. The way to solve this is to “fix” the individual person’s body/brain until it functions normally or at least looks like it functions normally. It is sad that some bodies/brains simply cannot be “fixed” in this way and those people will be unable to fully participate in life because of they way their bodies/brains work.
  • The Social Model – disabled people are disabled because society has been built by and for abled people and in a way that actively excludes disabled people. Buildings, policies, cultural practices and everyday objects have been created with a false norm of human ability in mind. This norm can and has changed – the normal human is now expected to be able to read (making those whose brains do not find reading easy excluded) and glasses are inexpensive and easy to wear (meaning people who would have been regarded as blind a century or two ago an be fully included). The solution is to challenge and change the norm to include everyone, with no expectation that all adult humans will share some particular abilities and products and practices designed with the intention to include as many people as possible. In the mean time, making adjustments to practices, spaces and expectations to intentionally include whose who are often excluded – for example providing large print menus in a cafe, hosting autism friendly film screenings or rearranging a meeting to a space that is already wheelchair accessible.

The essential difference between these two models is where they locate the “problem” of disability and where the solutions. The medical model places the problem of disability on the individual – it is their body that is wrong where the social model places the source of the problem with society for not trying hard enough to be inclusive. The medical model places the responsibility for solving disability into the hands of doctors and doctors alone. The social model places the responsibility for solving the problems caused by disability onto every single one of us to do what we can to ensure that we are not accidentally shutting people out.

For more on models of disability, try this art piece by Ju Gosling or browsing the various models on this site or reading this booklet.
There’s a lot more information available on the internet about the various models of disability.

Right, having gotten through or skipped over my badly-worded intro to models of disability you can now get to the main post.

I’m a disabled person, I’m also a student and an active participant in my student union’s politics as well as it’s social events.My SU, the NUS as a whole and my University all currently have policy that says they support the social model of disability. This means that they have policy which says that they do not consider disability to be an individual problem to be worked around by the individual disabled person but a societal problem that it is up to everyone to work to solve.

So far so good. Yet, in my dealings with all three institutions, the University, the Union and the NUS, I’ve seen a pattern of actions that suggest that whatever model of disability they’re using it isn’t the social one.

This pattern concerns asking people what their access needs are.

Asking people what they need is a good thing and I commend the Union for asking all candidates for the recent elections to provide their access needs and the NUS for asking this of all those who attend their conferences BUT in both cases this question was asked of people who had little or no idea of what they were going to do and so no way of working out what they would need in order to access the election / conference. My University does not ask all of its students for their access needs but does ask those who identify themselves as disabled – again usually before they have any idea what their course will involve and can only guess what kind of help they will need.

What follows is often a very inaccessible event where the Union / NUS / University can say “But we asked you what you needed and you didn’t tell us!” or “But we did what you asked us to do!” and claim that they have been as inclusive as they possibly could be.

This betrays that the people who ask the question “What are your access needs?” don’t really understand what they’re asking and are possibly slipping into thinking of “disability” as an individual’s problem caused by the way their body works. Disabled people do not have handy lists of our needs that we can email you as the answer to that question and it would be useless for us to try to make such lists in the first place.
Why? Because I don’t have access needs full stop, I have access needs with reference to particular activities. I can only tell you what adjustments and help I will need if I have been given full and clear information about what I will be expected to do. Without this information, I am left guessing and asking myself things like: Will they expect me to stand for more than five minutes? Or navigate a crowded room on my own? Or walk up and down any stairs?

I’ve run in student elections here and helped other people to run. Apparently, the organisers of student elections here thought they could assume that all candidates could: walk down a flight of stairs, climb onto a two foot high stage with no steps, get themselves home late at night, be at events every evening for over a week, see powerpoints that were not described, stay for hours in a loud, crowded room with flashing lights etc etc Am I to guess that all these things will be expected of me? I don’t think they are reasonable expectations at all – and those expectations are  disabling.

Actually following the social model requires being actively inclusive – making sure every event is as accessible as possible. Which means ground floor level access, no assumption that every one can read the powerpoint, making sure people will be able to get home from late night events, making sure you’re not expecting people to repeatedly attend both late night and morning events, all speakers using the microphone, sensible volume of music and somewhere quiet set aside to go, seriously questioning the use of flash photography… Yes, it requires a lot of thought and it seems easier to just lay the responsibility with the disabled people themselves but really when you won’t put the thought in to make what you do as accessible as it can be, the message us disabled people take home is that we’re not really wanted and your event isn’t for people like us.

So, to sum up:

  • Put thought and effort into making your event as accessible as you can to begin with.
  • Get out as much clear and detailed information as possible about what will happen at the event in advance.
  • Include specific information about access in advance. Use something like this access statement generator.
  • If you know who is attending the event (i.e. candidates, speakers, delegates etc) provide them with all the access information and event information and ask them to contact you if they need any access adjustments or want to clarify something.
  • Make sure all possible attendees know how to contact you if they need specific adjustments you’ve not already thought of or extra information about access.
  • Congratulations, you will have done the bare minimum in actually following the Social Model in creating your event.