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.

Social Care Update!

In my last really personal post, I talked about how reablement services can be (are) really abusive and gaslight-y and how I was told that my care needs had been found to be “moderate” rather than “substantial” or “critical” so I was to be left with no care and no support to find any… Well, I was very brave and I complained to the council. I was prepared to fight, to take it right to the top and get the press or my MP or the Care Quality Commission involved if need be. The council saw that my complaint was very serious. They reinstated my reablement care and appointed me a different and more senior assessor who listened to me and took my (quite severe) mental health problems into account.

Quite a lot more was written onto my new assessment form. A support worker came to my assessment to help me talk about the very difficult and distressing details of what care I need and why. My new assessment, full of details about my mental and physical ill health, was taken back to the council and I was (finally) awarded long term care.

From the beginning of next week, I will have people making sure I eat and wash and look after myself. I’ll even have someone to come round and help me keep my bedroom tidy. With the assurance that I will be prevented from neglecting myself with regard to these basic needs, I feel like I have a foundation upon which to base myself as I try to build a life in my new city. Knowing each day that I definitely will eat an evening meal and when that will be, keeping myself and my surroundings reasonably clean, with these things taken care of I can do anything – write a novel, get a voluntary job, survive the therapy waiting list, go to social events… maybe even get on a bus to somewhere I’ve never been. Without support, those basic needs quickly stop getting met and I have no foundation on which to build a life of new experiences, of practising and learning old and new skills, a life in which happiness is not a fleeting dream but a real possibility.

Less than a hour’s support a day makes that much of a difference to me. Without it, just surviving is incredibly difficult; with it, a life full of wonders becomes possible.

When your council next cuts support for adult social care, as councils regularly do, think about me. Less than £10 a day of council money is for me and many others like me, literally a world of difference.

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?

What does “depressed” look like?

People often say things to me that imply that they can’t quite manage to believe that I have depression. Sometimes they outright say that I don’t have depression or say “But how can you have depression?”. Sometimes people react with shock or suspicion or by immediately assuming that I have very mild depression. More recently, I’ve noticed that when I talk about my depression, people reply as if I’m talking about something that happened in the past. They ask “What was it like?” “How did you cope?” and even “How did you get over it?” instead of “What IS it like?” and “How DO you cope?” and “Do you think you’ll one day get over it?”
I talked to some other people with chronic mental health problems and this weird tense-slip thing turned out to be a common experience.

I have had depression for over a decade. It’s been a major part of my life since childhood and if you think on that a minute you’ll have to realise that almost everyone who knows me in real life has only known me with depression. I’ve been depressed longer than some of my siblings have been alive. And I’m still depressed now. People often find this information hard to process because, well, they’ve got this image of depression in their heads and most of the time I don’t look like that. Depressed people are supposed to, say, cry a lot. Or repeatedly say “Oh I’m so depressed”. Or have visible physical scars or a very public crisis in which either a kind stranger, a good friend or men in white coats have to step in to rescue them from their own self-hatred. I don’t look like that. I look, well, normal.

Sometimes depression looks like me.

Sometimes depression isn’t so much crying and crisis and self-hatred as it is a near-insurmountable inability to motivate myself to do or enjoy anything. Without significant support from other people, I don’t eat or wash or get dressed or go out. I’m not sure exactly what it is I actually do but getting out of bed, going to bed and everything in between are really, really difficult for me to do – not in and of themselves but because I have very little motivation. I literally bribe myself, coax myself and if need be force myself to do these normal every day tasks that are required for Staying Alive.

Sometimes depression involves having difficulty concentrating on things and paying attention. So I find myself really, really wanting to understand what I’m reading, watching or hearing and just.. not doing. Repeatedly.

Sometimes depression isn’t so much not liking myself as it is thinking that I am an amazing, wonderful person… but it ultimately doesn’t matter because I’m never going to achieve much if I can’t even keep myself fed and dressed. I know I’m awesome but I feel unable to do anything much to show it. I feel like I don’t contribute enough to my friendships and relationships. I feel like I neglect my activism and my writing. I wonder why anyone likes me when I could do so, so much more to deserve it.

Sometimes depression looks like avoidance.  I stopped seeing many of my friends a few years ago. I still love them dearly but am terrified of trying to reconnect in case they resent the distance I allowed to grow between us. I love my younger siblings but am scared of being a disappointment as a big brother because I disappear when things get bad and only reappear when I’m fairly sure I won’t somehow mess things up. My inaction causes the very thing I’m frightened of to happen and I sort of understand it but I still can’t find my way past the fear and hurt to reach out to those I love.

Other times, it can look like recklessness. I impulse buy things – usually small cheap items of food or jewellery to make myself feel better. I can afford to right now but I still find myself doing it when I really shouldn’t. They make me feel better for a while but are usually followed by guilt. I feel bad for daring to want to feel good.

Sometimes my depression even looks like success. When I was at my worst with my depression, I rarely cried in public but I did write two novels and hundreds of poems, pass nine GCSEs and four A Levels and share a rich and deep friendship and imaginary world with some wonderful people.

My depression waxes and wanes but it’s never really gone (for a few glorious months once I thought it had and then I had a sudden and unexpected breakdown). It mostly manifests as I’ve written before as unwanted thoughts and even dialogue inside my head telling me that I’m bad and worthless and exhausting me so I can’t always remember that i disagree.

I think I’m actually pretty amazing. My friends and partners and family think so too. I’m struggling right now but I tend not to look like I’m struggling; because most of it goes on inside my head, because I have adequate support to keep me fed and clean and dressed, because I push on and do difficult things like talking to people and leaving the house because I want to be a good friend, a good partner, a good brother.

This is what depression can look like. It can look like a charming, smiling, sociable, intelligent young man with lots of friends and people who love him. It can look exactly like someone “twitter famous”, a well-known and well-liked blogger. It can look exactly like a clean, well-dressed, knowledgeable acquaintance at a party.
Depression can look exactly like someone like me.

Which is to say, depression can look like anyone. It’s not something you can see.

Get well soon!

I keep nearly writing this post. Because people keep telling me to “Get well soon!”. I can tell they mean it kindly and even genuinely wish that I will become well. But the thing is… I won’t. I can’t.

I have fibromyalgia. Fibromyalgia is chronic (which is medical jargon for “long term”) and it is incurable. Almost no one ever diagnosed with fibromyalgia has ever spontaneously ceased to have it (as sometimes happens to people with milder forms of me-cfs which is a related condition). Basically, once you have fibromyalgia, you have it for life. I am going to be ill (and from time to time very ill) for the rest of my life.

I’ve described fibromyalgia here before in quite a bit of detail but forgive me for briefly describing it again here. I am in pain. My muscles and joints hurt all across my body, every concious second. Being touched, even gently, is painful. I take a lot of medicine for the pain but all it can really do is lessen it, soften it – not make it stop. So it’s often not strong or unbearable pain but it’s always there. It is both physically and mentally exhausting to live with constant pain. It leaves my muscles weak and fatigued and as a result I can barely walk unaided.

I will have to take pain relief daily for the rest of my life. I will likely always need mobility aids. I will probably always need other people to help care for me.

I cannot describe this as “wellness”. I am not well. I will never be well again.

I can and do live with that. I’m usually okay or at least at peace with it. I’m happy and I love my life and I cope.

But sometimes someone is well-meaning and kind and wishes me “Get well soon!” and the weight, the heavy, solemn seriousness of being incurably ill, suddenly bears down on me.

***

I wish people “Feel better soon!” because I don’t know what’s going on with them. Maybe you might want to consider adding this phrase to your vocabulary.

Addendum:
Yes, I know there are scientists working on cures. But they’ve been researching for 50 years now without yet working out what fibromyalgia *is* so I’m not holding much hope for a cure to be discovered, trialled, found to work *and* made available on the NHS during my lifetime.

3% – I get Adult Social Care

Apparently, three percent of UK adults get support from Adult Social Care. This interests me for two reasons: one, because I am one of those adults and two, because for as long as I can remember the Social Care budget has been cut, again and again and again. 

I’ve been receiving Social Care since September when my girlfriend and I made the scary but ultimately most sensible decision to live in different cities from each other after almost three years of living in the same room(!). I realised that my girlfriend had been increasingly acting as my carer whilst we’d been living together and that, while I wished it were otherwise, I was actually too unwell to look after myself. I need carers.
It was hard to admit because I am fiercely independent and live in a world that that associates “needing help from others” with “dependency”, “weakness” and “giving in”. Accepting help from non-family-members is often seen as a failure and a last resort. My actual experience of arranging and receiving care, however, has been a brilliant expression of my Independence, Strength and Resourcefulness – it has been the exact opposite of “giving in”.

I referred myself to my local council’s Adult Social Care Team via email. I was assessed for free loans of equipment (a bath board, two perching stools, a grabbing tool and a bed rail) that were delivered to my new home the same week I moved in. I met and talked with social workers who agreed a care plan to ensure I was guaranteed to get one cooked meal every week day and three showers a week. That also started the same week I moved in.

So, what’s it like?
After organising to change to a different agency when I was approved for long term care, it’s actually going really well. I know all the agency’s carers and they follow instructions. I’m completely in control of what happens – they just provide a pair of hands and some company. I was originally told that I’d only be able to have ready meals and I argued that wasn’t good enough – not least because I’m likely to need some help from others for the *rest of my life*. I planned various meals that could be made in 20 minutes or less and now I do as much or as little of the preparation as I feel up to and then a carer follows my instructions to make the food, makes me a cup of tea and does the washing up while I’m eating – and even makes the bed or puts my laundry to dry as well if there’s time. My carers enjoy spending the time with me and their free cooking lesson – I’ve got quite the reputation for interesting food and carers really do go home and try things they’ve made for me.

Without social care, I wouldn’t die but I’d become much more ill very quickly. At first it was very, very hard to accept that. Some days I can function almost “normally” but I can’t do it every day. Having help with cooking and washing myself means those activities are less tiring and I’ve energy left over to do things that I want to do.

Why do I get social care?
I’ve left this to the end but I can’t not include it. I know so, so many people who sound like they’re having a really hard time and could potentially do with help but don’t ask for it because they don’t think they’d qualify or don’t feel worth it or are scared like I was of giving in and becoming dependent. I get social care mainly because I am at risk of neglecting myself – I have little motivation to look after myself and left completely to my own devices would stop eating completely. That combines with me sometimes being physically unable to cook or wash myself. Both of these are recognised by my social worker as serious problems best solved by providing me with another person to help me cook and wash myself regularly – making it near impossible for me to self-sabotage by refusing self-care and a very, very clear record that it’s happening if I do. If I stop eating, someone *will* notice and my social worker will contact my GP. I have set up a system that actively prevents my depression from starving me.

I’ve come to view my care plan very differently from how society told me to view needing care. How can it be a sign of dependency that I arranged and co-authored a detailed plan of how to prevent myself becoming seriously ill? It’s not. Where is the weakness and failure in learning to understand, anticipate and work with my health needs? In pooling all available resources to ensure I can live the kind of life I want to lead? There isn’t any. 
I’m not giving in. I’m working out exactly what I need and using all tools at my disposal to ensure my health needs are met.

I’m likely going to write more posts on this and I’d also like to open this blog to submissions of guest posts on the theme of recieving adult social care – both positive and negative.