A few months ago, during my NHS CBT for anxiety, we were talking about my worries that the government was coming after people in the WRAG of ESA. Her exact words, upon finding out I was in the WRAG, were this: "you're bloody joking".
At her nudging, I wrote to the DWP explaining why I should be the Support Group. This was used as an excuse to start my latest in a long line of Work Capability Assessments, although most of them have been done on 'scrutiny' (i.e. based on paper evidence). One of my fears about trying to get into the Support Group (where both my therapist and the group's Occupational Psychology person thought I belonged without doubt) was that I would be punished for my impudence.
The ESA50 arrived; the Brown Envelope Of Doom, as we call it. It's hard to explain what long-term disabled people feel when these envelopes arrive in a way that truly gets across how terrifying it is. Jack Monroe describes poverty taking them from "being the girl who was always the lead in the school play, to a woman who can't open her own front door" and running away from the doorbell. There are similarities here, but we don't get a choice about being in the play. The Department for Work and Pensions demands, and we must perform or die.
I consider myself a resilient person. I'm a queer born in and still living in the Sunderland. I grew up in poverty and was bullied relentlessly (including by teachers, with a lovely episode of being locked in a cupboard as a 6 year old) until I was 16. Resilience is how I'm alive, but after years of assault, my fortifications, like those of Troy, are crumbling.
The ESA50 arrived. I filled it in, tore it into shreds, sat in my bed and cried. I couldn't do it again. I couldn't perform my life for the peering eyes of strangers wanting to find excuses to judge me Unworthy. That's what the ESA50 and the Work Capability Assessment are; we must perform our disability to the public's appointed busybody. Repeatedly, and on demand, on pain of death.
I wrote to the DWP, saying that I wanted to cancel my request. They refused, and sent out another form. IAPT, for whom I have nothing but praise, arranged for the department's occupational psychology woman, who does career advice and benefits work, to sit with me and help me fill it in. With their support, I regained my confidence.
Then the results came... of a sort, anyway. I received a letter saying I would be paid X amount, but not the results of the assessment. I wrote to them asking for clarification on the situation and they treated this as a request for a mandatory reconsideration, which obviously failed because I "did not specify any reasons for disagreeing" with a result I didn't even know about.
The reconsideration itself is, frankly, laughable. Even the Welfare Right's advisor I saw the other day described it as "one of the least detailed I've ever seen". Here are the key baffling parts.
1: "The HCP opined that you had a limitation in maintaining consciousness weekly". This is a very very very dubious description of the limitations of my condition from the perspective of the ESA descriptors, considering medical professionals describe it as "extremely debilitating in that it is incompatible with most social and professional obligations".
2: "I have also considered Regulation 35 and decided that this does not apply in your case as there is no evidence to indicate that you fall under any of the exceptional conditions for receipt of employment support allowance [Employment AND Support Allowance, you goon. Get it right.]. These refer to inpatient treatment, terminal illness, chemotherapy/radiotherapy, infectious disease, pregnancy, dialysis, disabled students and life-threatening conditions".
This is actually wrong. Regulation 35 contains a section to allow people into the Support Group of ESA if there is substantial risk to someone's health if the claimant is found capable of work-related activity. This isn't mentioned by the assessor, but I included evidence that this was the case and it was evidently ignored.
That evidence was a statement from a person who knows me (which would be accepted as evidence in court) describing the things which happen to me when I am forced 'off schedule' by circumstance or design. He literally says he has to hold me back from walking in front of traffic because I am simply too tired to be aware of my surroundings. Is this an insubstantial risk? There's significantly more than that, but you get the idea. There are significant risks to my physical and mental health from being found capable of work-related activity and thus mandated to do it; the very method of sleep deprivation they would inflict on me is literally used as torture.
3: "Further information was sought from [my GP]".
In the ESA50, I specified that my consultant is the one who understands my condition. It is very rare; a single study in Japan took 10 years to find 56 cases, and they were deliberately looking for us. (do read it; it's free and a good study) The chances are a GP has never heard of it; and I am positively sure my GP doesn't understand it.
Neither of the two consultants were contacted for information. This is inexcusable; they deliberately ignored the best source of information and instead went to someone who (while very good at his job) doesn't understand my condition because it is ultimately outside his remit. I imagine this is a widespread failing of how the WCA tackles people with rare diseases. People who don't understand it asking people who don't understand it. Defenders of the system will respond that the WCA 'looks at individual limitations, not conditions', but how are you to understand limitations if you don't understand the condition?
The key parts of my appeal are thus:
1: That I am at significant physical and mental risk from the consequences of being found capable of work-related activity and the mandated consequences of that decision.
2: I meet the Support Group descriptor of being incapable of reliably performing sequential personal actions.
I am relatively sure of the first one, and a lovely bit of case law makes it so that the DWP have to provide the Tribunal with examples of what 'work-related activity' they think I'm capable of. I can write a CV, but that's about it. Work placements, courses and so on, are out of the question.
The second one is more contentious, and relies on the definition of "personal actions". The Medical Services Handbook includes things like arranging GP appointments and sorting out finances, but also "brushing teeth". I can brush my teeth fine, but I've been kicked out of a GP practice and a hospital outpatient department for my inability to stick to anything resembling a schedule. Today, I slept through going to the cinema with friends. I wasn't able to join a gaming group I was really interested in because it wanted a one-hour-a-week-but-at-specific-times commitment.
Will I win? Probably not, and that's terrifying. It's so scary that I simply don't want to bother. I'm having to push myself to fight it. In the meeting with the Welfare Right's advisor (who has no idea if I have a case or not), I was a gibbering wreck, tripping over words and unable to stop actually shaking.
If I don't win, I don't know what the consequences are. That's also scary. I know it's only a matter of time before the Conservatives see the current ESA WRAG claimants as an easy target for savings and I'm not sure I'd survive the consequences of losing 30% of my already-below-the-poverty-line income. I do know, however, that if I do lose, it's not a problem with me: it's a problem with the law and with how ESA was designed.
I need to keep telling myself that. The law wasn't designed to be 'good' or 'helpful'. It was designed to save money. I don't want this fight. I've been in the WRAG since September 2010 without batting an eyelid at it; not because the decision was right, but because it wasn't worth the effort to fight.
I don't want this fight, and I'm scared of what's going to come after I almost inevitably lose, both psychologically and in terms of the Government being abject shits. I don't know if it's anxiety or logic speaking when I say I'm going to lose, but I don't want to bother trying. That I will lose already feels like a personal failing, even if the problem is in the legislation and not myself, and I'm ashamed of myself for wanting to give up, run away and hide.
Why am I fighting it? Because it's all I can do.