Some emotionally-tiring ramblings on my Work Capability Assessment, and stuff.

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.

The Paradox of ESA's Work-Related Activity Group and nasty plans to cut it.

There's a paradox in the way Employment & Support Allowance was built. It affects 5,000 of the 2.5 million ESA claimants. Very few people know about it, and even fewer care. I'm one of those 5,000 people. This group includes people with degenerative conditions like Alzheimer's dementia, or people with static but permanent conditions like my untreatable neurogenetic sleep disorder. The BBC confirmed what those of us who keep an eye on welfare have known for a while; that the Government is considering eliminating part of ESA and forcing those people to claim JSA. For us 5,000, this is a perfect storm of awfulness.

How does ESA work?

After the medical assessment ('Work Capability Assessment', WCA), people are assigned to one of three groups, the Work-Related Activity Group (WRAG), Support Group or they are found 'fit for work'. Officially, and contrary to the concerted campaign of disinformation by the Government and media for the last five years, to get into the WRAG or Support Group, you must be medically incapable of any work. The difference is whether you are capable of work-related activity, like 'writing a CV'. The WRAG comes with mandated 'work related activity' which is to ostensibly 'prepare people for employment'.

The Paradox

There are 5,000 of us with permanent disabilities in the WRAG, classified as being "unable to work in the longer term". We are in the position of being told we need to 'prepare for employment' while the Government itself says we are very unlikely to be able to work in anything resembling a reasonable timeframe. Personally, I have been in the WRAG for 5 years, since September 2010 and am currently undergoing my 8th WCA*. My condition has only gotten worse.

That people can be told "you need to get ready to work" while being told "you can't work" by the same person defies logic.

The Change

Today, the BBC confirmed that the Government is considering eliminating the WRAG of ESA and moving us all to Jobseeker's Allowance (JSA).  This is (understatement) a very bad idea, for a few reasons.

1: It is not legal to claim JSA while you can't work , but if you're in the WRAG, you cannot work. These people are going to be left with no legal source of income.

2: The WCA itself is crap and inaccurate and is biased against the poorest and most disabled areas of the country, as I've discussed previously [clickable link]. In these areas, you are more likely to be found fit for work or to go into the WRAG. Removing 30% of these people's income is simply yet another attack on the poorest and most disadvantaged areas of the UK.

3: Even if the legislation was changed so these people became eligible for JSA, there is no way they could cope with the extra conditionality. People with mental illness, particularly, are already massively struggling and failing to meet the relatively lax conditionality of ESA.

"You must work, but you cannot work".

There are 5,000 of us in the WRAG of ESA with the prognosis that we will be "unable to work in the longer term". If (when?) this change goes through, we will be in the position of being permanently disabled to the point we, by the Government's own admission, cannot work. They will then punish us for not being able to work by removing the income they've already cut by 30%.

We are an oversight. Given that we are only 0.2% of the ESA case-load, it seems beyond doubt that the situation of people who are unable to work in the longer term going into the WRAG was not intended, but we are too few to make enough noise to fix this on our own. We're too few for the media to care about.

The charities that originally did the FoI request to show how many of us there were called for exemptions to this for their pet condition, shafting the rest of us without these conditions which are notable for the sympathy they elicit and their public awareness.

I've been fighting this on in my own way, including all 5,000 people. I've wrote to my MP and the media. I'm working on getting an official policy on this into my own Party, but I and the 4,999 others need help carrying all these torches.  This whole policy must be opposed, but when that fight is over, the 5,000 still need your help.

Slave to the Rhythm

I have an urge to write. This isn’t something I’m used to. Even when I was doing things I truly enjoyed – my dissertation, recent court stuff – I didn’t have an urge to get things down on paper for their own sake; it was to complete the work. Thus urge, though, is to write about my feelings and to toss it onto the Internet with all the significance of pissing in a river. This is for it’s own sake, and I basically have no idea what I’m doing. Between that, and the opiates, and the very tiredness… Don’t expect neatness and conciseness! I’m not even sure what I want to say yet.

For those 3 people living under a particularly large rock, I was the lucky recipient of a neurological sleep/circadian rhythm disorder called (amongst its other names…) ‘Non-24-Hour Sleep-Wake Disorder’. That name is unwieldy, so we just call it “N24”. This link is a decent lay introduction, while this link is a more technical, medical exploration. I was diagnosed in the 09/10 academic year, have been symptomatic in this form since I was 16 (now 27). There are even hints that something was going on from birth onwards. There’s increasing evidence that there’s some genetic weirdness going on, but no clear indication of causes and treatments are, to be generous, ‘ineffective’ (no, behaviour doesn’t cause it. Be gone.). It was there from the beginning, and it’s here to stay.

It’s a part of me, and that’s the first thing bothering me. My life feels perfectly natural – it doesn’t feel like a perpetual state of dysfunction and disease. Left to my own devices, you couldn’t tell the difference between me and a ‘chronotypical’ person (one with a ‘standard’ 24h entrained circadian rhythm) 50% of the time, and in the other 50% of the time, I’m completely fine too. Lonely, perhaps, but that’s a consequence, not a symptom. Your lives are as confusing to me as mine is to you; you don’t understand a 26 hour day, and I don’t know how you cope with 24. My circadian rhythm feels as legitimate and immutable as my sexuality does. The treatment is to make us ‘normal’, so that we can ‘function in society’ when the truth is that fundamental changes to how we, as a society, ‘do’ time could help a lot of people. But that’s inconvenient.

I feel a sense of shame saying that. It could be that I know I’m talking out of my arse, but it puts me into a bit of a conflict. On the one hand, I’m saying that I’m actually healthy and this is just ‘variation’ rather than pathology, but on the other hand I waltz around talking about being disabled and claiming disability benefits. N24 is, as a friend once put it, the “perfect social-model disability”. My disability is in the interaction of my body with the rules and structure of society, not in my body itself. I logically know this – just the other day, a friend described the effect my condition has on me and it was quite heartbreaking to read – but I still feel like an imposter. All the friends I’ve made through disability stuff in the last few years probably deserve better than me leeching off their battles and successes, and everyone else struggling through the interminable hell of circadian rhythm disorders deserves better than me prancing around going “hohoho we’re just quirky”. Again, I logically know this isn’t the case, but #feelings yo.

I find it very difficult to express the problems N24 causes. It’s simply too far out the realm of normal human experience to be able to convey to you, and that totally sucks. My friend (the one above) wrote a letter in support of a benefits application because I just couldn’t express the effects. He’s been around since the start, so he’s seen it first hand. If you spend time with me, maybe you’ll see the effects too. He mentioned having to stop me walking absent-mindedly into oncoming traffic – my attention span just.. didn’t exist enough to know that there were cars. Those aren’t the effects that are on my mind right now though. They can be avoided if society doesn’t get in my way.

I’m a bad friend, and I… resent myself for it. I’m a complete flake and I give you the most pathetic excuses. “Hey, I’m sorry I can’t come to your wedding; I’ll be asleep!” “Sorry I didn’t come to [my uncle’s] funeral, I was too tired”. Both of those are things that have happened. I can’t even schedule a multiplayer game because I don’t know if I’ll be awake/in any decent state. Modafinil can give me an extra hour or two in an emergency, but that’s all. It can’t turn night into day.

Disabled people use something they call ‘spoons’ to represent their difficulties and efforts. I talk about my row of dominoes. Each domino represents a time-unit of ‘decent health’, physical and psychological. One wrong move, a sudden gust of wind and they tumble out of control and there might not be someone there to stop me walking in front of cars. The only way to save the row is to run ahead and kick some out of the way – a recovery period in which I am basically incapable of doing anything, sometimes even getting out of bed. Even simple things – a 10 minute GP appointment scheduled in my night – set the dominoes wobbling and I have no choice but to flick a few out of the way, before and after the event. A GP appointment can take days of prep and recovery, even if that’s just making sure I’ve got nothing else planned for those days.

That’s why I’m a bad friend. Your wedding is wobbling my dominoes and I know the wind is due to pick up. Your birthday party was in the chunk I had to kick away to keep myself functioning.  Maybe you just needed confirmation too far in advance; sometimes the wind just does whatever it wants. Maybe it was just too expensive. All I ask is that you know I'm trying and that whatever time we do get to spend together is truly precious to me.

The nocturnal periods of N24 are bad – someone once said that the loneliness is the worst thing of all. I disagree; the worst part for me is knowing that they will always come again. As night follows day; nocturnal follows diurnal. I get annoyed at people who think they have much control over when and how they sleep; we’re all slaves to our rhythm, just mine’s a little more obvious.

Why the proposed ESA reduction is an attack on the disabled, and an attack on the poor.

Sigh. This is primarily a response to this [http://www.bbc.co.uk/news/uk-politics-29821696] BBC article, but also tackles some misconceptions about disability and so on. This is a long one and, for some of you, might be an uncomfortable read - sorry. I ask that you stick with it unless you meet the criteria at the end of this paragraph. This is my second edit. I've lost a lot of the more intense anger as I've been writing and have reached a state of calm rage. The gist of it is: If you even instinctually think this could be a good idea, then get out of my life. I deserve better people in my life than you.

Let us start with the factual inaccuracies (a generosity - I'm more inclined to call them 'lies') first, because good lord there are big ones here. This is one of the most factually inaccurate things I've seen from the BBC in quite some time, but at least some of it comes from uncritical parroting. At best, it shows the BBC just parrots the Government line. At worst, it shows the Government is filled with people who haven't got a bloody clue.

1: "judged to be capable of work with appropriate support ". 

NOPE. If you are "capable of work" (with or without any qualifier) then you are, by actual definition, not eligible for Employment & Support Allowance.

2: "They also revealed concerns about claimants moving off jobseekers allowance onto ESA.".

Nope. This is not actually a thing that can even happen. By definition, to claim JSA you must be capable of work and to claim ESA you must not be capable of working. Your circumstances can change such that you become incapable of work when you previously were (and vice versa), but this is not just people 'people noticing they can have an easier time on ESA'. Jog on.

3: "ESA recipients in the Work Related Activity Group (WRAG) - individuals who have to prepare for employment".

Nope. Some people in the WRAG - those with prognoses under 6 months, usually - can be compelled by sanction to undertake activity 'intended' to get them ready for work. I am in the WRAG. I do not "have to prepare for unemployment" - in fact, during my last WCA they said they "do not foresee a return to the workforce in the longer term". I have a feeling Auntie doesn't know what the fuck she's on about.

4:  " Claimants have to undergo a work capability assessment to determine whether they are eligible and at what level."

Nope. The WCA tests eligibility for ESA full stop. The level is determined by the "Limited Capability for Work Related Activity Assessment".

5 (from the OBR, which shows.. worrying ignorance in Government):"the backlog of applications encourages claimants previously not found eligible for ESA simply to reapply".

Even getting into the starting phase of ESA (financially identical to JSA, but with different conditionality) requires signed letters from a physician responsible for your medical care confirming that you are not medically capable of work, and you cannot be paid ESA for a reapplication within 6 months of being found fit for work by either WCA or appeals tribunal (unless your condition has changed or for a new condition, in which case a WCA should be immediately arranged and payments restarted if the 6 month time limit passes).

Now onto the politics and, y'know, basic fucking morality.

Jobseeker's Allowance is (supposedly; but that's for another time) a 'subsistence' benefit. It is there to keep you alive until you get a job. It is nowhere near enough to enable the 'cushy life' people on it (and other benefits) are so often accused of having. ESA is not a subsistence benefit. It is not higher than JSA to account for the added financial costs of disability - that is what DLA/PIP is for. ESA is higher than JSA to allow some basic fucking quality of life. The change would be moving from an annual income of £5000 to £3500.  By  proposing or supporting this change, you are sending a very clear message: you do not think disabled people deserve a decent life.  ESA at its current rate isn't enough to provide a good life, but it can provide a decent life if you have support and know what you're doing. By supporting this, you're telling me you don't think I deserve a decent life.

A few of you might say "oh, but it's not about you". It is. I do not think I have ever actually said "I am disabled" on Facebook. I am a disabled ESA claimant in the Work-Related Activity Group but with an 'indefinite' prognosis. This is targeting me.

A few more of you might say "well, we know YOU are real and deserving, but what about Jim down the street with the 'bad back'?" and I have a reply that might upset you. Policies like this are your fucking fault. There are endless fucking hoops to jump through to even get ESA and it is constant stress and pressure. Living with illness itself is constant stress and pressure.

Has a vindictive shitlord told the DWP you're claiming fraudulently  [yes this happened] because they took a disliking to you? Did a brown envelope come through your door and reduce you to a panicked wreck because you don't know if the DWP are coming for you now? Did you - because of your illness - miss a DWP appointment and now can't pay your bills for 3 months? I hope you've never owned or bought anything nice because you're about to be told by a complete stranger to justify your continued existence. Is your social category the centre of a witch hunt being supported by your own Government?

The thing is; pretty much every ESA claimant is someone else's 'Jim down the street'. You might think I'm 'obviously' 'real' but very few people would agree with you. A few of you have spoken of 'disabled people' forgetting - or not believing - that I am one. There is a very pervasive belief in our culture that 'disability' only applies to very few things - cancer, loss of limbs (primarily if you're from a military background, and in that case your ability to work is often irrelevant), things that affect cute children (see http://blobolobolob.blogspot.co.uk/2011/08/disability-hierarchy-1-introduction.html). There is the assumption that you can judge a level of someone's disability by your often inconsequential interactions with them, or simply by looking at them. A "bad back" simply cannot be as much a disability or worse than an amputation of a non-dominant hand and deserve the same, or more, financial support.

What you don't understand is that disability is a SOCIAL thing. In the same way that a phenotype is genetic expression in a particular environment, disability is illness in a social context.  A person with an amputated hand has an objective medical 'event' but can have their disability significantly reduced by prosthetics. In medical terms, my condition is largely an irrelevance - a minor hormonal curiosity, but 98% of us have "a history of severely disrupted social functioning" [http://www.journalsleep.org/ViewAbstract.aspx?pid=26193]. People are disabled by their society. 24-hour public transport would reduce my level of disability, but society does not deem it necessary. Wheelchair users are disabled by a society that sees accessible buildings as an afterthought. Jim's 'bad back' might cause him very severe pain when he sits down, like ankylosing spondylitis can, but a potential employer won't pay for properly supportive furniture or allow him enough rest breaks. That guy with one hand? He got a prosthetic on the NHS.

The point is that disability is a complex interaction between medicine, bodies and society and you cannot judge a person's level of disability by glancing in from the outside. It is not fun and it is not an 'easy way out of work'. It is not a choice and it certainly isn't a "luxury lifestyle filled with iPhones and flat-screen TVs".

A lot of people talk about benefits being too high because people own items they see as luxury that they "have to work for". The "flat screen TV" is the prototypical example (but really, try finding a non-flat screen TV for sale these days). This argument has been the same for decades. At one time in the not-too-distance past, people on benefits shouldn't have been allowed to own 'luxury' washing machines. What you are simply saying - but couching in language that allows you a sense of victimisation coz remember, an annual gross income of £5000 is luxury - is that disabled people who cannot work do not deserve good lives. If that is your view, then I think you are a disgusting person.

Aside from an obvious attack on the lives of disabled people, this is also an attack on the poorest areas of the UK, and an attempt to stop the redistribution of wealth that happens because of social security. I've shown before that, despite overall poorer health, people in poorer areas of England are not only more likely to be to be found fit for work than people  richer, healthier areas, but also that they are less likely to get a Support Group judgement [http://wordthingsofjon.blogspot.co.uk/2014/01/WCA-is-not-fit-for-work.html].

Income received as benefits, like any financial income, has to be spent before it can become goods and services. You cannot withdraw an ESA payment from your bank and have it magically turn into the mythical flat-screen TV. It has to be spent in shops. It has to be paid to other people. It has to be paid to a bus driver. This money is then taxed as income, or taxed as VAT, or goes to staff as wages. A portion of your wages, dear Taxpayer, come from people in the WRAG of ESA spending their income. As does a portion of the local tax income spent on the schools, hospitals, roads.. whatever else you claim to cherish. By attacking this income differential as an unwarranted, undeserved luxury, the Conservatives are trying to stop of the flow of money into poor areas. The North East of England, my home region, gets £5 per person from central government for public transport funding [http://www.bbc.co.uk/news/uk-england-16235349] - 0.18% of the per-person spend of London. Using 2014 data, total spending power in the North East would be reduced by £12.61 per person per year, compared to £9.44 in the South East and £8.63 in London.

There is a significant and strong correlation (r = .068, p = .044, N = 7) between the percentage of households earning below 60% of the median income and the value-per-year of the proposed ESA cut. In the 3 lowest-poverty areas, the average reduction in spending per person is £9.65, while in the 3 highest poverty areas the average is higher than £14.

My data, with sources, is here if you want to take a look yourself: https://www.dropbox.com/s/g8gt57j4iyfb88r/esa%20reduction%20data.xlsx?dl=0

There have been a few interpretations of this story. One is that this file was 'leaked' as a way of expressing annoyance about having to change WCA provider companies. Frankly, this is not the view to which I subscribe, but if it is the case and this idea was never seriously considered, then it simply shows disdain for disabled people. The Government is willing to terrify us (and yes, we are terrified by this idea) as a means-to-an-end and use us as tools.

There's also the view that the leak was arranged as a way of the Tory party 'taste-testing' potential manifesto policies for the coming election. My view of the Tories ("No amount of cajolery, and no attempts at ethical or social seduction, can eradicate from my heart a deep burning hatred for the Tory Party. So far as I am concerned they are lower than vermin." Aneurin Bevan.) is such that this is the more likely and much more terrifying alternative. It doesn't matter that the combined error and fraud (separate statistics are not available) rate for ESA is less than 4% (and about 2% of the total ESA spend is unclaimed).

It's almost inevitable that I'll get a comment along the lines of "but what can I do????". If you've read this far, then you've already done something. Listening to disabled people is the start. Go forth and learn (http://bit.ly/1xG0tWZ). Challenge people spouting verifiable untruths (like spiralling fraud - the error and fraud rate is statistically stable). Tell your politicians when they're talking shite. Just... do SOMETHING. Don't sit back and think "oh, I'm safe" because it is very likely that, one day, you won't be. And fight it because fighting it is the right fucking thing to do.

LGBT Shame and marketing.

Sigh. We knew it was coming. Time for me to word-vomit about Pride. Two particular aspects, actually, but both are interlinked.

First, something I've noticed fairly recently. I first noticed it in Belfast, and I put out feelers elsewhere who've confirmed it. Take a look at 'public facing' material; logos, adverts, leaflets, etc.

Here's one from Belfast: https://pbs.twimg.com/profile_images/460010763445235712/l-P5Rk5p_400x400.jpeg

Here's the Liverpool Pride website: http://www.liverpoolpride.co.uk/

This is the general form that Sunderland's take: http://imgur.com/rievGf8

And finally, here's Brighton. http://www.brighton-pride.org/upload/BP2014_ad1_A4.jpg

What I've noticed has been more eloquently expressed by others, so I'm stealing their words. What I noticed was the 'sanitisation' of Pride. Very little public-facing material mentions gays, lesbians, transgender people, bisexuals, queers.. anyone. Queer people are being erased from Pride. If Pride is a 'celebration' of such identities, as Manchester's website tells us right at the bottom, then why on Earth are they not taking the front seat? Why has it become [Location] Pride, with any mention of what we're actually 'proud' of being limited to innuendo, iconography (oh, a rainbow!) and tedious soundbites? "Equality" indeed.

One time, Pride wasn't a 'celebration'. It was a protest, reaffirming our inherent value and worth and taking back what rights had been stolen from us. Now, people are content to treat it as a public piss-up, a 'party'. At London, pointing out sponsorship of Pride by a company which sells arms to countries whose anti-gay (because it's always just cis gay men) laws (a byproduct of British imperialism, fyi) have become cause du jour for the clicktivist gays is 'missing the point' and 'spoiling the fun'.

So. Pride has lost its political purpose, and essentially become nothing but a street party and a socially-sanctioned day where, if I'm lucky and in the right place at the specified times, I can kiss my boyfriend without getting bricks lobbed at me. But it's also become a marketing vehicle for Gay Inc.

Gay Inc. is the derisory term applied to the mainstream LGBT organisations (e.g. Stonewall), figureheads (e.g. Ben Cohen) and media that supposedly spearhead our rights and represent our interests, but (I believe) present a socially-acceptable (and thus inherently narrow and limited) version of what queer people are, but I also apply the term to companies (such as Burger King, with its recent hidden-and-had-to-be-asked-for-and-not-a-big-deal-but-apparently-amazing 'rainbow wrapper' on its burgers) that try to market themselves to gay men while not actually working to improve their companies (let alone our lives and societies) in any meaningful way, like BAE and Barclays sponsoring London's Pride.

The use of Pride and - increasingly - wider LGBT rights issues as marketing ploys leads me to my second observation. Simple attendance at Pride is becoming expensive. Manchester Pride charges £22 for the weekend. Newcastle 'officially' didn't charge, but people were harassed and guilted into giving them money. In the UK, an unemployed 16-24 year old (I would argue among those most in need of the solidarity a political Pride can give) gets £57 a week. Someone unable to work due to illness or disability would have to pay 20% of their weekly income to attend.

My second observation was this: poor queers are deliberately excluded. When we discuss how we're being excluded from our own events on the basis of cost, we're told that these events simply couldn't go ahead without charging. When we propose a system of 'pay what you can', we're told it's unfair on people who pay more, and will be 'abused' by people trying to get in for free. It's not unfair that we're excluded form our own community; it's unfair that we're asking to be included.

Look at this magazine's definition of gay men: "a community known for its disposable income, its love of the finer things in life and its loyalty to those brands that show allegiance". Look at how the most memorable activity of Stonewall in the UK is basically celebrities advertising its petulant merch. Our media actively defines gay inherently "rich" and thus denies that poor gays can be a thing, and our "celebrations" deny our access.

As I see it, poor LGBT people are being actively erased in the name of Gay Inc's profits; after all, why should a company sponsor your event if they can't expect excellent advertising to a "community known for its disposable income"? The erasure of queerness from the face of Pride events plays into this: it's much easier to get a company to give you money to get their name on a non-specific poster talking about "diversity" and "celebration" than it would be on one specifically talking about queer people; queers aren't profitable enough to risk alienating straight people.

LGBT identity is being narrowly defined by the organisations that claim to represent us, and all in the name of profit. And it's fucking bollocks. 

Ramblings on sexuality and disability, part 1: the Ian Birrell article.

There's been a little Independent column floating around the intertubes, published on the 31st. A fair few of the people I follow on Twitter have been sharing it uncritically, or even heaping praise upon it and imploring everyone else to share it.

The article, however, makes me feel quite uncomfortable for reasons I'm not quite able to articulate. I'm going to use my incoherent thoughts about it to launch off into a rant I've been meaning to put 'on paper' for some time. I do apologise. Get out while you can.

First, we need some context. Birrell is married to a woman, and has two children, one of whom "has profound and multiple learning difficulties." He was also a speech-writer for David Cameron during the 2010 election. From his marriage to a woman and his writing in the article that triggered this.. incident, I'm inferring that he's straight and this does have an impact on how I interpret his writing. If this assumption is inaccurate, I apologise to Mr Birrell. Too much of this rant is going to take the form of "I'm not comfortable with a str8 saying this..".

Anyway! First paragraph. Straight out of the gate with a proclamation that homophobia is no longer a 'thing'; homosexuality (ignoring other queer sexualities) has been "embraced into everyday normality". This is similar to the things I see ostensibly middle-class, sheltered and otherwise 'privileged' gays saying, homophobia is less of an issue and we have things like the Marriage (Same Sex Couples) Act as proof. I have the.. pleasure of not living in a hip, metropolitan city like London or Manchester. Public displays of non-hetero sexualities are allowed from 1800-2400 on Tuesdays (when the pubs were running at a loss and needed more customers, natch), and then only in certain areas. Outside of this time and these places, not appearing totally cishet carries significant physical risk. This is not what being "embraced into everyday normality" is. This is being ghettoised. Homophobia is not 'over' because one middle class, straight man thinks his social circle has become more accepting, nor are problems with homophobia isolated to school bullying and other countries (read about 'homonationalism' here.)

Then suddenly, a wild change of topic appears! Birrell moves onto talking about various disability issues. I fail to grasp what purpose his introduction serves, and the implications are somewhat unpleasant. For starters, there's an implicit assumption throughout this piece that LGBT and "disabled" are mutually exclusive groups. Considering that I'm quite convinced that I exist, this is a bit absurd. My sexuality has had an impact on my experiences of my disability, and vice versa, but more on this later. Other people have suggested that this.. structure gives a feeling that any progress made in one area (i.e. LGBT rights) comes at the expense of progress in another (i.e. disability rights) and creates a hierarchy: fixing the injustices inflicted upon disabled people is more important than continued work on LGBT rights. Were I feeling generous, I would suggest this was just a misguided bit of 'marketing' to get people to pay attention to what you're trying to sell, like that image of a rainbow-coloured Oreo. I'm not feeling generous - he's using LGBTQ people as his own little tool to help his unrelated point. He's using us as a "political football", something he decried mere sentences ago.

Credit where credit is due: highlighting the issues faced by disabled people is obviously important, but consider the next paragraphs. He begins with saying that, now, 50% of disabled people experience discrimination in the provision of goods and services. This is followed by some brief discussion of work-related issues, such as higher unemployment amongst disabled people.

The first thing that troubles me here is how he transitions from one issue to the next. He literally says that the employment issues are "worse" than the goods & services discrimination. To be charitable, I quite disagree that this is "worse". Due to the very nature of disability, some of us will be incapable of working and, for even more of us, regular employment is inadvisable. Suggesting that employment issues are more important than discrimination in goods and services is built on the idea that every disabled person (except a select few disabilities) is capable of work and should work. This has the same logical underpinning that leads to the media regularly conflating the Work-related Activity Group of Employment & Support Allowance with "oh, they're just workshy", and the assumption by the Government that employment is inherent value with regards to health, regardless of circumstance. He rightly acknowledges the role society plays (e.g. making buildings accessible and direct discrimination), but it's a shame this receives a cursory sentence; a paltry offering when compared to his 3 paragraph non-sequitur about the Marriage (Same Sex Couples) Act.

I am also troubled by how he supports his argument that disabled people; we are less likely to be employed "despite being the most loyal employees". Leaving aside my own bias that loyalty to an employer is often a bit ridiculous, Birrell seems to be trying to make a case for the acceptance of disabled people by employers by referring to (to him, anyway) a positive attribute we apparently all share. Our value is not inherent or self-evident by our status as being Actual Humans With Inherent Worth, but rather it is contingent on us behaving in a way that society desires and displaying attributes it finds pleasing.

It's no coincidence that he almost immediately mentions the Paralympics. The coverage of the Paralympics in the UK was a veritable orgy of 'inspiration porn', usually those puerile memes featuring a (visibly) disabled person doing a simple activity such as "walking" or "drawing". These memes, like Birrell's statement, assign disabled people worth based on how 'useful' we are; either as employees or a petulant 'inspiration'. However, there's also a subtext of what is 'acceptable' behaviour from a disabled person. Doing sports, smiling, being loyal employees are noteworthy activies from a disabled person, and are praised. Being unemployed, being in pain, demanding better treatment or access from society are the behaviours of the 'bad' disabled. After all, if Stephen Hawking can do being employed, we can't we? The Paralympics were never going to to 'help' attitudes towards disability in the UK; they were about the disabled people who "could", and was destined to be used as a stick to beat the disabled people who "can't".

I've gone on about this article for long enough, I think. I just have two more quick points to make. Firstly, the value of disabled people is the same as a non-disabled people, not that we're an untapped market or exploitable ("loyal") workforce. Our value is not economic.

Second, a white middle-class cishet abled man telling us that there's only one group of people seen as "second class citiziens"? Nah mate.

Anyway. DONE! Due to the somewhat baffling implicit assumption that disabled queers do not exist, I've been thinking about how my sexuality and disability and social class interact. That's for next time. 

Not Fit for Work: A statistical analysis of bias in the Work Capability Assessment

Introduction

I am repeating an analysis I have conducted a few times before, using the most up-to-date information available. The purpose of this analysis is to understand the effects of socioeconomic deprivation and health on the outcome of the Work Capability Assessment (WCA), the gatekeeper test for Employment & Support Allowance (ESA).  As educational differences were floated by @dr_wood_wca as a potential explanation of the observed effects, I’m including an analysis of education also.

Previous analyses found a complex relationship between the sets of variables, with socioeconomic deprivation and health both having unexpected relationships with the difference WCA outcomes: the proportion of people going into the WRAG, the Support Group, and those being found fit for work.

The analysis focuses on Local Authorities and similar areas in England (which I will call ‘local areas’), and not individual people. However, data from the 827,200 WCAs completed as part of the migration from Incapacity Benefit have been included, separated into the 324 administrative regions of England. This data does not include the ~60,000 claims either currently awaiting WCA or withdrawn prior to WCA.

A cursory glance at the available WCA statistics suggests problems with the test. The proportion of claimants being found fit for work varies between 13% and 37%, and the proportion of claimants going into the Support Group varies from 26% to 48%. That some areas are finding more than double the proportion of claimants fit for work than others is concerning, and warrants further investigation.

A brief statistics lesson

A correlation is a measure of the strength of relationship between two variables, and is measured in ‘r’. When r = 1.00, the two variables increase at the same rate. When r = -1.00, one variable increases as the other decreases, but the rates remain the same. r = 0.00 means there is no linear relationship between the variables. An r value that is significantly different from 0 but between -1.00 and 1.00 means there is a linear relationship but it is not perfectly proportional,  This is illustrated in the table below, and examples of how different correlations are graphed is shown here.

r = 1.00		r = -1.00		r = 0.00
Variable 1	Variable 2	Variable 1	Variable 2	Variable 1	Variable 2
1	5	100	7	100	-10
2	10	90	14	90	-10
3	15	80	21	80	15
4	20	70	28	70	0
5	25	60	35	60	-15

Statistical tests are significant when p is equal to or less than .05. This means that the probability of getting a result like this, assuming that the relationship is not real, is 5% or less. p can have other values, such as .001. This means that the result of getting a result like this, assuming there is no true relationship, is less than 1%.

Deprivation

For my measure of socioeconomic deprivation, I am using a composite measure of both the proportion of a local area’s population living in one of the 20% most deprived LSOAs (Lower layer Super Output Area; a small administrative region of approximately 2,000 people) and the proportion of the local area’s population living in one of the 20% least deprived LSOAs. This composite variable will be known as “deprivation”.

Deprivation has a long established relationship with health. The relationship between life expectancy and deprivation in this dataset is r = .806, a very strong relationship. Therefore it is expected that there will be a significant effect of deprivation on WCA outcomes.

Deprivation showed a significant correlation with both the proportion of people going into the Support Group (r = -.304, p < .001) and the proportion of people being found fit for work (r = .443, p <.001). This shows that as deprivation increases, fewer people go into the Support Group of ESA, and more people are found fit for work.

  

In the 30 areas with the highest proportion of fit for work judgements, 29.50% of the population live in one of England’s 20% most deprived areas. In the 30 areas with the lowest proportion of fit for work judgements, this number is 1.10%.

Health and Disability

Considering ESA’s role as a benefit for those whose health inhibits their ability to work, it seems obvious that there will be a relationship between an area’s general health and local WCA outcomes. However, it is necessary to statistically control for the effects of deprivation on health and the other variables to truly see the effect that health has on WCA outcome.

There were two significant partial correlations when controlling for deprivation; life expectancy was positive related to the proportion of Support Group judgements (r = .300, p <.001) and negatively related to the proportion of fit for work judgements (r = -.287, p <.001). The same results were found with two other general health variables; local rate of early cancer deaths and local rate of early cardiovascular disease deaths. This shows that, paradoxically, a higher proportion of WCAs place claimants into the Support Group in healthier areas, while more people are found fit for work in less healthy areas.

In the 30 areas with the highest proportion of fit for work judgements there are an average of 23 (24%) more early cancer deaths per 100,000 population, 24 (51%) more early cardiovascular disease deaths and a 2.72 (3.4%) year reduction in average life expectancy.

I also included a brief analysis of disability, using data from the 2011 census. The data consists of self-reports of disability, and the proportion of respondents reporting severe or minor disability based upon how much it affected their day-to-day lives. Given that I have already established a relationship between general health, deprivation and WCA outcome, I will control for these effects when examining the relationship between disability severity and WCA outcome.

	Population reporting no disability	Population reporting moderate disability	Population reporting severe disability
WRAG	-.313	.320	.288
Support	.312	-.317	-.289

As the controlled analysis and graphs show, there is a significant variation in WCA outcomes across areas reporting different degrees of severe, moderate and little disability. As levels of moderate and severe disability rise, the proportion of claimants going into the Support Group – the group of ESA intended for the most severely disabled claimants – goes down.

Education

Finally, it was posited that education would play a role in WCA outcomes. This is feasible, as a good education could confer an ability to research and use information relevant to a WCA, such as understanding the criteria or an ability to explain symptoms and conditions sufficiently.

To this end, I conducted a partial correlation between the proportion of GCSE students achieving 5 A*-Cs including Maths and English and WCA outcome, controlling for deprivation and health for their known role in educational attainment. There were two significant findings; a positive correlation with Support Group judgements (r = .244, p < .001) and a negative correlation with WRAG judgements (r = -.226, p <.001).

Overall

To get a better idea of how all these factors interact to affect WCA outcomes, I built a path model to analyse the effects on both Support Group and Fit for Work outcomes, as there were not enough data to legitimately model all three WCA outcome variables. This model was a reasonable fit for the data (GFI = .910, RMSEA = .239), and illustrates the complex relationship between the variables.

The model shows that, for example, as deprivation increases by 1 standard deviation, life expectancy decreases by 0.81 standard deviations, and as life expectancy increases by 1 standard deviation, the proportion of people found fit for work decreases by 0.43 standard deviations.

From this model, it appears that deprivation itself has a small but real effect upon WCA outcome; higher deprivation increases the proportion of fit for work judgements slightly, and increases the proportion of Support Group judgements. However, the consequences of deprivation have a much more powerful impact upon WCA results. Lowered life expectancy, for example, results in more claimants judged fit for work, but lowered life expectancy carries some of that effect forward by making people more disabled, which in turn reduces the number of people entered into the Support Group.

Given this model’s relatively poor statistical fit, it is intended mostly as an illustration of how the effects I’ve discussed can interact, and is not intended to be a watertight portrayal of the ‘truth’ of what is really happening with Work Capability Assessments.

Conclusions

Given the rather intricate relationship between the variables I studied, it is difficult to draw firm conclusions about their exact relationship. However, one thing is clear: the WCA is unfair.

People in poorer areas are at a disadvantage when claiming ESA and going through the Work Capability Assessment. It is clear that this is in part due to indirect effects (e.g. lowering educational attainment), but it also seems likely that there is also a direct effect. For example, in the 30 areas where people are found fit for work the most often, 30% of the population lives in one of the 20% poorest LSOAs. In the areas where people are found fit for work the least often, this is 1%.

Secondly, people living in the unhealthiest areas are at a severe disadvantage in the WCA, being found fit for work more frequently than people in healthier parts of the country. For example, in the areas that most frequently place claimants into the Support Group (average 45%), there are 100 early cancer deaths per 100,000 people per year. In the areas that place the least people in the Support Group (average 29%), there are 115 early cancer deaths, an increase of 15%.

It’s worth bearing in mind that this is a repeat of an analysis I conducted previously. The results are broadly the same, but this analysis was more in-depth. These are largely similar to the results that I sent my MP, who in turn forwarded them to Mark Hoban (then Minister of Employment, forwarded by Esther McVey, Minister for Disabled People).  His response talked about delays, tribunals, the Harrington review, Atos training, the supposed benefits of employment, and the fact that ESA and the WCA were Labour inventions. Basically, everything EXCEPT the issues I raised. For fairness, his letter is available at this Imgur link. The dataset I used, and my sources, are available at this Google Docs link - every source is Government data, easily accessible to the general public.

Edit:

Someone suggested I made an addition to make it clear that I had tackled the problem of increase family-wise error rate. All reported p values are still significant after applying the conservative Bonferroni correction, which gave a new alpha of .05/27 = .002