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.

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?

When Phobias aren’t Phobias

It’s been awhile since I did an autism focussed post and recent conversations have made me think pretty hard about something. About my childhood phobias that weren’t and aren’t phobias at all.

As a child, I was afraid of animals. And insects. And people. And the vacuum cleaner.
As an adult, I am afraid of… most animals, most insects, new people. And, yes, the vacuum cleaner.
These aren’t phobias. Phobias are irrational fears of things which cannot hurt you. I have a phobia of heights but my fear of, say, chickens isn’t a phobia because it’s a rational aversion to something that can and has hurt me.
What’s this got to do with autism? The reason my fear and avoidance is rational but looks irrational is based in my neurology. What I am afraid that animals and insects and people will do to me is touch me. Some textures hurt – especially when I’m unprepared for them. What else I am afraid the vacuum cleaner, insects, animals and people will do? I’m afraid that they’ll make noises at me. Some noises hurt me. Noises and textures that don’t bother my neurotypical peers are EXTREMELY distressing and/or painful for me. 

Add to this that I took many, many years longer than my typically developing peers to get a basic grasp of human body language and have only very, very recently come up with working models for cat and dog body language. I essentially spent my childhood surrounded by things whose behaviour seemed inherently unpredictable which were prone to nonconsensuallly touching me, suddenly making noises at me and moving in and out of my limited range of vision at what genuinely appeared to me to be random. Avoiding any and all people and animals I did not know looks like a perfectly understandable reaction in hindsight.

I now have the vocabulary and knowledge to articulate to myself and others that I’m not scared of spiders so much as I’m afraid that they’ll walk on me, I’m not afraid of flies but will have a meltdown if a buzzing one is in the same room as me etc. I couldn’t articulate this as a child because I’ve had these sensory sensitivities since long before I could speak. They hadn’t yet developed into fears and aversions but what happened when I cried in pain from a noise or texture that wouldn’t hurt neurotypical people? The neurotypical adults around me understandably misinterpreted my cries as fear and reacted by trying to reassure me that “Flies / puppies / vacuum cleaners can’t hurt you. It’s okay. Don’t be scared”. So when I later was able to speak, how did I describe what was happening? I used their words back at them and said “I’m scared of flies”.

Flies can hurt me. They do. They have done my whole life. It hurts when they walk on my arms and when they buzz. It’s perfectly rational for me to be afraid of things that hurt me.

Through learning how to predict the behaviour of dogs, cats and other pets, I’m no longer scared of them. People, I can sort-of understand and at least they usually back off if I yell loudly at them for touching me. Insects I can live with if they’re quiet.

And vacuum cleaners? I still can’t be in the same room as one in use. And that’s okay.

We are not your collateral damage

Being a “lefty”, a student, a feminist, a vegetarian, a disabled person, an LGBT person and a Jew, I find that a lot of my friends have causes that they are passionate about and actively campaign about – not least because almost all of my friends are in at least one of those categories.

And I get that. I really do. I know how it feels to look at some terrible injustice and think “If only people knew this was happening, they’d be so angered and upset they’d just have to do something about it”. I know how urgent it can seem, how important, how necessary. And it is important and those issues that set your heart pounding, the things that get you up in the morning determined to make the world a better place are things that often need more attention and more people working for change…

BUT.

Not at the expense of the health of people like me. Not at the expense of people with mental health problems that can be triggered by seeing distressing images or videos or reading graphic descriptions of violence.

This is really quite, quite simple. Don’t use shocking images to get your point across and if you’re going to use shocking images or graphic descriptions of violence, gore or medical procedures provide a warning so people can choose to opt out of seeing/reading them.

But it’s meant to raise awareness…

That’s not a good enough reason to risk causing serious harm to someone else’s mental health. Some images will cause some people to experience distressing symptoms such as flashbacks, intrusive thoughts, pyschosis or panic attacks and may lead to some people harming themselves. That’s not an acceptable thing to risk – no matter what you’re raising awareness of. You don’t get to decide for other people that your message is more important than their safety – so provide warnings and let people make their own choices about what they can safely see.

But of course it’s distressing! I want to shock people into action…

I’ve heard this excuse a number of times and I get it. You know that images like the one you’re sharing are distressing. You’re pretty upset yourself and you think that seeing the image will move people much more than reading a description of the situation. Heck, you might even be right about that. But getting triggered is not just being upset or distressed and if action is what you want from people as a result of you sharing an image, triggering people is entirely counterproductive. Being triggered involves something causing someone to experience severe negative mental illness symptoms and can often result in that person spending hours or days unable to do anything but try to cope with and recover from those symptoms. I am no use to women’s rights if I am crying in a corner and no use to Palestine if I’m hyperventilating. In the long term, people who have the kinds of mental illness that can be triggered may find ourselves avoiding precisely the kind of activism you want us to get involved in because we are not safe when people around us share potentially harmful images without warnings or attempts to gain consent. We simply can’t stay involved if harming us is seen as somehow acceptable or “collateral damage”.

But it’s for the greater good! / Triggering won’t affect very many people…

If you’re making this argument, take a good long hard look at yourself and think “What kind of person am I? Am I the kind of person who is okay with causing harm to other people to further my aims? Even when those are innocent, uninvolved people who might even genuinely want to help my cause?” Have some compassion, please. If you can further your cause without harming people and you choose to do it in ways that can harm people, I’m not going to think of you as a nice and trustworthy person no matter how good your intentions.

We are not your “collateral damage”. We are not eggs that get broken so you can make your omelette. We are people and we deserve to be able to be online and be involved in activism without other people putting our mental health at risk.

Autism, Linguistic Processing and Lip Reading

I’ve a lot of thoughts about more political stuff going round in my head but am having trouble separating the different strands into things I could actually write about, so instead here is a post about one way my autism affects me and ways that I work around it.

From talking to lots of other autistic adults, I’ve learned that quite a lot of us have difficulty with something called “linguistic processing”. What this means is that our brains take longer than most people’s brains to differentiate speech sounds from non-speech sounds and so we are slower to realise which sounds we can hear are most important. Neurotypical people’s brains seem to be pretty good at quickly working out which sounds are speech, our brains have to work to remember that not all sounds need equal attention.

When I was a young child I was repeatedly given hearing tests only to find that my hearing is perfectly typical. Other autistic adults have recounted similar experiences. Part of this of course stems from autistic people’s tendency to act differently from neurotypical people, teachers and parents may have difficulty believing that a child can hear if that child doesn’t look up when their name is called or doesn’t look at people who are speaking – but these are not really indicators that someone has heard what is being said. The other reason why people might repeated assume that an autistic child or adult is deaf or hard of hearing is the noticeable delay between something being said to us and our response. If this delay is long enough that the other person repeats what they said, it looks like we didn’t hear them the first time.

So, what’s happening?
When someone speaks to me, it can take a moment for me to recognise that anyone is speaking. Then I have to recognise that someone is speaking *to me* and I am supposed to listen. Once that’s out of the way, I have to check what language is being spoken. If it’s English, I then hear all the words and start tying them together as a sentence in my head. This takes time. Whole seconds. More if any words are unfamiliar or unexpected. I often have to make educated guesses about how the sentence began or what some of the words are because I couldn’t listen to them properly over my own thoughts of “Is this speech? Am I being spoken to? Do I need to respond? Is this a command or a question?” Sometimes I guess incorrectly and answer a question that wasn’t asked – this furthers the suspicion that I cannot hear. But can hear fine – what I can’t do is process the information as quickly as it is being given.

I’ve had to live with this all my life and there are a few ways I’ve learnt to adapt. One is by lip-reading. Watching the shapes people’s lips make can give me more clues as to what words they are saying. Sometimes I find myself silently mimicking the shapes with my own lips to try to work out what someone is saying. Other things that have made my understanding of speech much better are subtitles (closed captions) and asking people to make or provide notes on what they are saying / will be saying. Power points are great for this – if I can read your powerpoint slides I have some idea of what you might be saying, the same goes for advance copies of lecture notes. Of course, most speech is not lectures or TV but writing down key points of what you are saying or have just said can be very helpful. I can’t write them down myself as I’m still trying very hard to understand what you said at all but it is very helpful when people write down what they are asking me to do for example.

What can you do?

  • Give people enough time to respond. Wait while I/they mentally rewind and replay what you just said until I/they understand it. Don’t immediately repeat what you just said. If about 30 seconds have elapsed, ask if you should repeat what you said.
  • Information in other formats. Write down anything really important.
  • Put subtitles / closed captions on your videos online and transcripts on your podcasts. I won’t be able to understand them properly without this.
  • Try to face the person you’re speaking to and not to obstruct their view of your face.
  • Don’t expect people to look at your eyes – or even at you at all – when you’re speaking to them. Many autistic people find it much harder to concentrate on speech if they are looking at someone’s face. Some of us lipread, some of us don’t.
  • Offer to go somewhere quieter if the person you’re talking to seems to be struggling – even if you don’t think it’s that loud.
  • Read this

BADD – People don’t listen

If you’ve read my blog much or know me in real life, you’ll have gathered that I differ significantly from some platonic template of “Humanity” in a number of socially undervalued / undesirable ways – which is to say that I’m disabled.Humans are all really quite different from each other and we all accept that – but some differences are seen as deficiencies, as problems, as wrongness. Part of the social model of disability is the idea that it was never set in stone which differences would be considered just differences and which would be considered problems. More excitingly, it still isn’t set in stone. Some “problems” can cease to be problems.

My body and my brain deviate from “standard issue” quite a bit. Increasingly, in fact. I have never been and never will be what is currently understood to be “normal”. For the most part, I’m okay with that.

Other people aren’t. They won’t all admit it but a lot of people seem to find people like me – disabled people – pretty disturbing. How do I know this when most other adults won’t straight up call me freak or cripple? I know this by people’s reactions when I talk about my impairments (i.e. the differences about my brain and body that my society considers to be deviations and problems).

When I talk about my autism, dyspraxia and dyslexia, I tend to be fairly upbeat and straightfoward. I like my brain, I’m used to how it works, I am in many ways a master of using it to learn and I know how to turn my differences into advantages. Whilst I wish there’d been more support for me when I was a child, for the most part I enjoy my neurodiverse brain and I get on well with it despite the difficulties I have navigating a world that wasn’t really designed to accommodate people with brains like mine.
When other people hear about my autism, dyslexia and/or dyspraxia, they say things like “I’m so sorry” or “That must be really terrible for you”. They use words like “suffers” to describe my life with my brain and they tell me I’m “really brave” and “an inspiration” for getting a degree. Basically, they treat my life long learning differences as though they are inherently and always a bad thing. They talk over me and instead of listening to how I feel, they end up telling me how they feel and how they think I ought to feel.
They are scared and sad and confused. They don’t want a brain like mine so they imagine I don’t want it either. But I like my brain and it would be scary and sad and confusing for me to contemplate having a brain like theirs instead.

When I talk about my chronic illness and the physical limitations and pain and tiredness that go along with it, I still expect people to agree with me that chronic illness is awful and to be sympathetic. This isn’t usually what actually happens.
When I talk about my chronic illness, I talk about constant wide spread pain, persistent exhaustion, unfulfilling sleep that nontheless takes up 11 or 12 hours of my day. I talk about the sadness of seeing my ability to walk slowly fade away, the fear that words like “incurable” and “progressive” fill me with, the grief of having to contemplate that I will likely never walk without mobility aids again. I talk about not having enough energy to walk to and from the campus shop, of having to cancel plans with friends because I’m in too much pain to get out of bed. Frankly, I talk about how this is my lot in life and G-d seems to be taking the fucking piss by giving me all this to learn to live with.
People nod and look concerned and then tell me I need to exercise more. Or eat more fruit. That a “strapping young man” like me should be off playing football. That I should get out more or see more people. They suggest alternative therapies and guilt-trip me later for not trying them. They suggest the “obvious” healthy living advice (more exercise, better food, positive thinking) as if I wouldn’t have tried that first. They tell me to look on the bright side, they insist without evidence that a cure will be found soon, they outright tell me I could walk fine if I just tried harder. Again, people talk over me but this time it’s to minimise my experience, to make it sound less painful, less awful and more easy to fix. They never tell me I’m still valuable even if I can’t work, they tell me I’ll soon be able to work. They don’t tell me “That sounds really difficult to live with” they just insist that things will get better soon.

When I talk out my mental health problems, people don’t even know what to say.

All I can gather from this, years’ worth of evidence from countless conversations is that people have their own ideas about disability and illness and they’d rather believe them than listen to my actual experience. They’d rather believe that learning difficulties are awful and tragic than accept that I love my brain and they’d rather believe that chronic illnesses are temporary, easily cured and never affect the young than listen and help me with the grief that is forming part of my process of adapting.

I want to end on a positive note so I’d just like to say thank you to everyone who has ever listened to and accepted my own thoughts and feelings about my experiences of my impairments. You’re rarer than you should be and you make me feel like a real and valid person. Thank you.