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.
You’re reading that correctly. The DWP has decided to give me just £19 a week to live off.
Yes, sure I still ge the PIP that I have been living off – but that’s money for my extra disability related expenses. It’s not for living off as I have been made to do since the end of September 2016 until this week – the end of February 2017.
So now I have £19 a week to cover my half of the groceries and the bills and my council tax and and and… So I’ll still have to live off my PIP.
I’m in the Support Group – they finally bothered to tell me (my Work Capacity Assessment was in October) – so I don’t get sanctions. So what’s happened to more than half the money I used to be paid to live from?
What did I do wrong to deserve this?
I GOT A BOYFRIEND AND WE LIVE TOGETHER.
That’s my “crime”. As far as the DWP are concerned, we are married (we’re not), his money is my money and my money is his (it’s not) and his “income” of a student loan plus mine of £19 a week is enough for two adults to live off (it’s not). But even if we were married and we did share finances and his income were enough for two, why should I be paid less when it is still just as impossible for me to work?
I’m in the Support Group. I’m not expected to look for work. I’m not expected to work. I have chronic, lifelong conditions that aren’t really expected to improve and can’t be cured. Employment Support Allowance, despite the name, is basically an income replacement for people like me who are not expected o be able to work for an income while ill – including those of us who might well be ill for the rest of our lives.
To take my only income away because my partner has money is… well I can think of a few words for what it is but I think I’ll go with “wrong”. It is morally wrong to force disabled people to rely on our partners.
IT IS MORALLY WRONG TO FORCE DISABLED PEOPLE TO RELY ON OUR PARTNERS.
My boyfriend is lovely. The DWP don’t know that. They don’t know what will happen to me once they make us so financially unequal that I have to depend on him for living costs. They don’t care: all they know is he has an “income” which is far below minimum wage – if he’d had a full time minimum wage job, we believe they’d have left me with no ESA income at all. They don’t care about making me live out of my PIP. They don’t care about whether he’d decide to spend all his money on himself and none on me and leave me to scrape by – financial abuse and other forms of domestic violence are extremely common in disabled people’s relationships. The DWP have no idea and no desire to get an idea about what this will do to me and him in particular or to disabled people across the country.
£19 doesn’t even buy an MP’s breakfast.
£19 doesn’t cover a taxi to and from the hospital.
£19 a week is my income. That’s £2.70 a day.
That couldn’t even buy me a lunch a day.
And the awful thing is, by the DWP’s own rules this is how the benefits system is supposed to work. This is not a mistake or an error. This is the UK’s “generous” benefits system in action.
I’ve missed you and I wonder if you have missed me.
A lot has happened since my last post. There’s no gentle or easy way to say it but my mother died. She had been very ill for a long time and in November 2016 she died. I don’t really want to write about that but it is important to me that you all know.
I did not know it at the time but while I and my family were trying to cope with my mother’s worsening health, her death and her funeral, the DWP had quietly stopped paying my ESA.
In fact, they’d stopped paying my ESA in September. Without telling me. Or giving me any reason why or instructions on how to fix whatever problem they had.
After several phone calls, we found out that we needed to fill in an ESA 3 form. That was before we realised that my payments had stopped. We weren’t told that the payments had been stopped until after we’d completed and returned the form and phoned them to ask if they’d got it.
They said that my payments would be backpayed and paid on the 20th of December. Which was 2 days ago.
I’m yet to be paid or even told in writing why my payments were stopped. All I did “wrong” was move house. I tried to tell the DWP in advance, sending letters to several addresses but none were received apparently. They heard from the local council that I’d moved and then stopped paying me.
They haven’t told me the conclusion of my WCA either.
I’m sure it will all be okay for me because I have a boyfriend who is able to phone them and chase it up until this is sorted.
So, yeah. Dear readers, that is why I’ve been quiet of late.
Sometimes this blog of mine is just a diary of my interactions with the DWP. I’m even considering going back and tagging such entries “”DWP Diary” for ease of reference.
I got a letter this morning inviting me for a(nother) face-to-face assessment – or Work Capacity Assessment scheduled for three weeks from now. Already I am feeling powerless and scared. I’ve done this before and I know it’ll probably go my way but the potential consequences if it doesn’t are terrifying. If I were to somehow end up in the Work Related Activity group, the results could even be life-threatening. It’s a heck of a huge thing to have to try to keep from thinking about. I got the right award last time. I’ve only got more ill since then. I’ll be being backed up by my boyfriend and by letters showing that I got referred back into long term therapy *partly because my GP and therapist expect my mental health to plummet in response to being reassessed*. Yeah.
I suspect it will all be terrifying and awful and make me very ill… and get the right result because it’s pretty obvious what the result should be.
But nonetheless, the system is set up to put me through this torturous examination of every task I need help with and why and ask me these same questions every couple of years.. quite possibly for the rest of my life.
This will be a short post but I think a surprisingly necessary one.
I have a piece of advice for everyone filling in PIP and ESA forms:
If you have access to a computer YOU CAN TYPE ALL YOUR ANSWERS OUT, SAVE IT AND PRINT. The form makes it look like you have to handwrite your answers onto the space provided – which is not only difficult and painful for many of us, it also makes it difficult to retain records of what your answers were.
If at all possible, type (or have another person type) out your answers to the questions.
Put your name and National Insurance number on the top of each page.
Type “Question 1” next to the answer to question 1 and so on. Use subheadings, underlining and/or ALL CAPS to mark particularly important bits (I usually put “All references to pain are to pain levels experienced when I take all of my medications, not pain experienced if I do not take them” in all caps).
Number the pages.
Save the document and back it up (to a USB, email it to yourself, add it to a cloud backup service) then print a couple of copies when you finish it.
On the form itself, answer the tick box questions and write “See attached notes” in every write-in box.
Put the form, any photocopied evidence you are sending and the printed out answers into the envelope provided (or send it recorded delivery in the envelope of your choice). Once, I couldn’t get everything to fit in the provided envelope so I put everything in a larger envelope and taped the freepost envelope to the front of it. This worked.
Next time they send you the same form, save another copy of your answers (use “save as”and change the name to something like “ESA answers 2” or copy and paste the whole document to a new document and name it something different from the first). Look over your previous answers, add any new stuff that’s come up, take out or change anything that’s no longer relevant. Once you’re happy that it’s fully accurate and up to date, print out two copies, save a back up copy, write “see attached notes” on all of the form… You get the idea.
If you had to get another person to do any of these things for you: ADD THAT AT THE END OF YOUR ANSWERS. If you can’t write / write much / write legibly ADD THAT. Otherwise they’ll assume you can write hundreds of words and have only chosen not to.
It’s YOUR form. You don’t have to force yourself to handwrite it just because it’s a paper form. You don’t have to write inside the boxes or shorten or lengthen your answers to fit into them. You need to give the DWP assessor enough information to assess you properly and you need to do it in a way that causes minimum harm to you in the process.
It’s the fifth night of Hanukkah. My candles have burned themselves out and I’ve not yet started another DVD to aid my continued attempts at hiding from the ever-present Christmas that has taken over the supposedly multicultural country and definitely multicultural city in which I live. I worry from time to time that my friends might get the impression that I hate Christmas… I don’t. But the apparent compulsoriness and seeming inescapability of the celebration is hurting extra hard this year and I feel like I am drowning in Other-ness and alienation.
And so I thank God for Hanukkah and its timely message about what to do in the face of overt and covert pressure to conform and to be something I’m not: hold fast to who you are, to what you are and the truths you hold dearest. Yes, you’re different and that’s okay.
I take Hanukkah every year as a challenge to re-dedicate myself to living my truth as a bisexual, transgender, disabled Jewish man and insisting on being all those things at once no matter how many people tell me I can’t be. I accept the challenge to be who I am as openly as possible; refusing closets and refusing the false comfort of assimilation into the surrounding norms.
Hanukkah reminds me of the miracle of the Jewish people still existing after thousands of years and hundreds of attempts to stop us. And I think also of the miracle that is every LGBTQ person and community surviving and thriving despite the oppression we have and do face. The miracle of Autistic communities and people insisting that we do not have to pretend to be non-Autistic to be acceptable, Disabled communities and people insisting the world change to accommodate us rather than expecting us to change to fit into it. And this year especially I think of Muslim people and communities and of Black communities and People of Colour communities continuing to exist in a world that is increasingly hostile.
I light each flame and watch as they light up the darkness and are not consumed by it. I remember the times I have felt pressured to hide my “light”; times I have been pushed to be less visible, to stand out less, to be more like what surrounds me. I try to picture myself as a flame, burning bright amidst dark surroundings.
I have never “fit in”. Sometimes I have wanted to. Sometimes I have suffered for my inability to stop being “different” from others or Other than what I was expected to be.
Sometimes I have tried to blend in. Let people assume that I’m straight or let them assume that I’m gay. Deliberately suppressed my Autistic body language or desperately attempted to hide my difficulties with numbers and writing. Taken off my yarmulke when it would have been safe but uncomfortable to be recognised as Jewish. I spent years trying desperately to be a girl out of fear of the consequences of admitting that I’m a transgender man.
The message of Hanukkah, for me, right now, is this: Be yourself. Assimilation is a tempting option but don’t let it trick you into being someone you aren’t.
As I’ve explored frequently on this blog, not feeling like I could be openly who I am and trying to at least appear to be something else has caused massive mental harm to me and right this second this same harm is happening to thousands of people. Hanukkah reminds me that one way I can help bring about a world in which no one has to hide the truth of themself away for fear of the consequences of living openly is for me to insist, as much as I can, on living openly now in this imperfect world, letting my light shine to banish just a bit of the darkness.
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.