ATOS-ed Again

Just for my DWP diary, I will quickly note that I had another PIP Assessment two or three weeks ago. The actual appointment was far less awful than I was expecting (though whether or not the report they make from it will be remotely accurate remains to be seen) but the experience of getting to and from the building , getting around the building and sitting in the waiting room was awful.

We’d told them in advance that we needed wheelchair access and preferably a ground floor room. Whilst we did get seen in a wheelchair accessible ground floor room, the assessment centre was located really far away from any bus stops and there was no wheelchair accessible route to the building – the choices of routes where “walk on the road cos the pavement is too narrow for a wheelchair” or “Steep ramp up to another slightly less steep ramp followed by 20 metres of cobblestones and then cross the car park while cars are moving”. So, no, not wheelchair accessible at all really.
We spent over an hour in the waiting room, regularly being told it’d be another 10 minutes or so until we were seen. It was an extremely hot day – one of the hottest so far this year and it was hot inside too but no one dared to leave. One woman nearly fainted from the heat. My boyfriend eventually worked out that there was air-conditioning – they just hadn’t considered turning it on. He asked them to turn it on and they did but seriously, who expects vulnerable people to sit for hours in extreme heat and doesn’t think to use the air-con that is available?
And maybe I’m being petty here but: while I avoided the terribly uncomfortable seating by staying in my wheelchair, the seats were laid out in a pattern creating corridors between rows of seats and the pattern left no space for any wheelchair users to park. All three wheelchair users in the room had to just block of a bit of corridor at the end of a row and hope no one would need us to move. It was as if they didn’t expect us.
Another sign that they clearly didn’t expect wheelchair users was that all the internal doors had to be opened for me by two people for me to pass through. No “Press to Open” doors or large light doors with easy to open handles. Just heavy doors that I couldn’t have opened.

Like I said above, the assessment itself went much better than I’d expected – this time they didn’t ask me why I was still alive with my suicidal thoughts, didn’t ask me how I got PTSD and didn’t make me do any unnecessary physical exams (all of which happened at my first PIP assessment). But really I wish the constant assessments would stop and the fear of the next new and exciting way ATOS and the DWP can dehumanise me and threaten to impoverish me could lift.

Advertisements

Why I’m Blunt

Or “Why I talk about my illness and disability so much and why I don’t talk about what my life would be like if I were well”.

I am very straightforward about being ill and how it affects me. I openly discuss diagnoses, symptoms and treatments with friends and I write about my illness a lot on here. Through the number of times my posts on chronic illness are being shared and the comments and commentary I see on and around my posts, I know that what I say here reflects the experiences of other chronically ill people. That recognition of shared experience feels important to me; we are a scattered community and many of us are alone or isolated in some way in offline life.

It’s in my offline life that I am sometimes accused of being “blunt” and I guess I am. Almost all of the time, I don’t pretend I’m okay when I’m not. I can hide a great deal of pain but I won’t deny it if I’m asked how I am. My stick (or wheeled walker) and my gait and other visible signs of disability I don’t hide. When people are getting to know me, one of the first things I make sure to tell them is that I have an incurable chronic pain and fatigue problem and that means I can’t really do x, y, z things and I might need some assistance with p, q, r things. I know I could just say “I can’t do this” and “I need some help with this” but it feels important to me to get the “incurable, lifelong pain and fatigue” said and understood. People don’t like hearing it and don’t know how to react and I can sympathise with that. But I need the people around me to have realistic expectations of what I can do and what my life is going to be like and getting “There’s no cure” and “I am in pain” heard and understood early on stops awkward conversations later on.

The other reason I’m so very blunt here and everywhere about how ill I am and how it’s incurable is, well… it’s a mental defense strategy. I *have to* be okay with being ill, I *have to* make myself comfortable with the knowledge that this is normal now – the alternative is spending my life grieving for a future that never happened, the life I could be living. It’s not that I don’t think about it sometimes, I do. It’s more that my mental energy is better directed at thinking up possible futures for myself *that I actually have half a chance of making happen*. There’s a lot that I can still do, a lot to work towards. I have no choice but to be okay with having all my plans and dreams from “before” fade into nothing and replaced with plans that centre what’s really important to me.

And so I’m blunt with others. To shut those “But what if you get better / if there is a cure / if you try this snake oil?” conversations down instantly. To practice being okay with the word “incurable”. To hand part of the discomfort our society has with illness and ill people to the other person to carry so I don’t have to deal with it.

To make myself into someone who accepts that his reality is real and okay, someone willing to work with what’s he’s got, someone grounded in the reality of his body with all its needs and capacities and limitations.

That’s why I don’t talk about what it would be like to be well. Imagining wellness for myself means imagine something my doctors have told me is virtually impossible. I don’t want to get emotionally invested in an idea of what my life could(n’t really) be because I don’t want to deal with the inevitable frustration and disappointment of never being able to achieve it.

I’m blunt because I’m honest. With myself and with you. Illness is my reality and it’s likely to be my future. I won’t sugar-coat that for any adult person. I’ll be honest and clear and my voice will not tremble or break when I say that this illness is life-long and disabling. I have to live with that. If you want to be part of my life in any way, you have to live with it too.

Addendum: above is entirely about my personal experiences, if you think it’s about you it maybe is but it’s also about dozens of other people. “There is no cure” is a sentence I have actually heard spoken to me by actual doctors, as are the words “incurable”, “chronic” and “progressive”. If you suggest I could “get better” you won’t be the first but you’ll still be wrong.

Words

When I look back on my childhood as a trans, queer, autistic, mentally ill and disabled little boy, I often see the things that were missing. The problem with hindsight, always, is that it can only occur late, very late or far, far too late.

What was overwhelmingly absent, what I desperately needed was WORDS. I lacked the words to articulate my trans, queer, disabled reality. And that makes me angry, even now. Because in many cases those words existed but were kept from me. In other cases, people like me are still working to cobble together words for who and how we are, in order to communicate in a language that wasn’t built with lives like ours in mind.

If you aren’t already nodding your head in familiarity and remembering the times when you couldn’t or can’t articulate who and how you are, then please try to imagine what it’s like. To exist in a world where there is no word you’ve ever heard of for you, where what you are or how you feel or how you experience the world is so unthinkable, so unimaginable, so (it seems) impossible that there are no words for it. You are unspeakable. You exist but… the never-ceasing feeling that maybe you ought not to, maybe what you are is never spoken about because it’s bad. Wrong. Not allowed. Not okay.
Nobody knows that you are how you are. You feel like you should tell someone… and at the same time that you definitely shouldn’t. You don’t have the words for it, anyway. Nobody seems to have the words. You can’t exist.. and yet somehow you do.

I have felt this way about being trans. I also felt this way about being bisexual. And having developmental disabilities. And experiencing mental illness as a child. Even as an adult, I am still not always sure that who I am is “allowed” or “okay”.
From my teens and into the present, I found myself tinkering with words to try to get a handle on who and how I am. To try to communicate it. To try to validate it.

Sometimes that means grasping tight onto existing words like “man” and “love” and “sex” and “independent” and forcefully insisting that my life can validly form part of the meaning of those words. My gender is man, love and sex are part of my relationships with my partners no matter what their gender, I am independent because I see that my own needs are met by ensuring the provision of carers and equipment.

Sometimes I need vocabulary I didn’t have before. Concepts like “trans and cis”, “neurodiversity”, “the social model of disability”, “intersectionality”, “heteronormativity”, “structural oppression”, “sensory overload”, “stims”, “meltdowns” “selective mutism”… become necessary to my continued understanding of myself, my life, the world and my place in it.

As a child, words to describe my own disability were few. Words to describe relationships and feelings other than heteronormative boy-meets-girl were even scarcer. Words to articulate mental distress were not available to me. Words to even begin to understand my gender as a trans little boy? I had none.
Lacking these words did not prevent me from experiencing myself as a disabled and autistic, proto-bisexual, transgender little boy in increasing mental distress.

All it did was make my life more frightening and unpredictable as things happened to me that I could not explain, I had feelings I did not know how to express and I did not know how to get any help or guidance from the adults in my life because I had no words to explain what was wrong.

I scoured fiction and nonfiction books and TV shows for validation, looking for someone, anyone, who was “like me”. I found the occasional gay person or mention of the possibility of same sex relationships. I found a few fictional characters whose mental distress echoed my own (though they never had anything that was canonically acknowledged as mental illness). The fictional wizards, demi-gods, cyborgs, mutants, faeries, changelings, aliens, rebels and rejects of my childhood reading felt more like me than anyone real I ever saw on TV or heard about in school. Erasure of trans and bisexual realities left me feeling alone and alienated. The sparsity of realistic representations of autistic people kept me feeling broken and unreal. I’m scared of over-stating this but also when I look back at my teenage years I mainly see a child who didn’t know how to be because he lacked the words to express himself and no way of knowing that being someone like him (like me) was an okay thing to be.

When adults won’t talk about same sex relationships or LGBQ people or trans people to and around children, this is what it does to LGBT children. When disability is a taboo topic and disabled people are rarely the heroes of their own stories, this is what it does to disabled children. When autism isn’t identified and autistic reality isn’t treated as valid, this is what it does to autistic children.

When children are living in a world of structural oppressions, some of which they are themselves facing, and the adults around them do not acknowledge that this is happening; this is what it does to those children.
Not telling children that LGBT and disabled people exist will not stop them from being LGB or trans or disabled. It will only make things harder for them if they are and harder for their LGBT and disabled peers if they aren’t.

This is a structural problem, built into what we teach in our schools, read in our books, watch on TV, who we hang out with and a million tiny-huge other things as well as what we each say (and don’t say) to the children in our lives. It can’t be fixed with a conversation here and there or a special book or Special Episode. But we have to try.

To be entirely clear:
This isn’t about my parents or my teachers (though it is a bit about Section 28). It’s about the society I grew up in and the resources that were and were not available to me as a child. If you’re reading this as a personal attack, I’m very sorry to have upset you but it really isn’t one. This blogpost describes what it was like to grow up trans and bisexual and disabled in 90s and 00s Britain. I hope it doesn’t describe growing up in 2010’s Britain as well.

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.