The Goldfish Guide to Being Reasonable

“Reasonable people adapt themselves to the world. Unreasonable people attempt to adapt the world to themselves. All progress, therefore, depends on unreasonable people.” – George Bernard Shaw.

Sly Civilian is having a bit of a crisis with the effects of his mental health impairment on his studies. He asks

“…what does the reasonable in reasonable accommodation mean? Is reason a term that offers any real protection at all? I think, for me at least, the whole problem is unreason. My panic and depression don’t follow very many rules at all, coming and going as they please.”

Rather than discussing the massive question of what reasonable accommodation (or reasonable adjustment as it is phrased in UK legislation) should mean to colleges, businesses and other organisations, I thought I would discuss what it means to be reasonable to ourselves – which I sense is a big part of Sly’s particular challenge just now. Much of this applies to academic studies, but the principles may be applied elsewhere.

The Goldfish Guide to Being Reasonable (to oneself)

The first rule of achieving anything whilst living with a changeable, unpredictable impairment is to set aside those questions which don’t have an answer. For one thing, I have long ago come to the conclusion that any significant analysis into whether or not any accommodation or a request for help is entirely fair and entirely reasonable can be very unhelpful indeed.

Fairness is immeasurable in this context; if a person has a disadvantage and something is put in place to compensate, there is always the possibility that this compensation falls slightly short, or else moves slightly beyond what was necessary. And reasonableness is as subjective a concept there is.

If you need help, ask. If you are offered help and it appears to be appropriate, accept it.

Last time I was taking exams, I knew it would be impossible for me to leave home to do them or to write out my answers by hand. I had no reservations asking for the appropriate adjustments on that score. However, what about breaks and extra time? I had to state exactly how many minutes of each I would need. And I also knew that unless my request appeared suspicious, nobody was going to question what I asked for. In the end I decided against any extra time on the grounds that the very concept seemed like widening the goalposts.

Now, I think that was a mistake. There is no way that, even spread out around breaks, I could have a two hour period with the sustained capacity for concentration and cognition as a healthy person. But it is incredibly sticky. The question that keeps coming to mind is, well what if I am simply not as capable as the other candidates sitting the exams? Perhaps I am making excuses, exploiting my impairment, taking advantage?

Therein lies madness. I tend to think that people who have any doubt about what they are entitled to are generally safe from taking advantage. There are some disabled people who expect special rather than equivalent treatment. The moral dilemma - and it is a dilemma - will simply not have occurred to them.

Secondly, it is unhelpful to question one’s own gauge of capacity at any given time. We are human. Everybody makes excuses to themselves when they lack motivation or stamina, and having impairments which really do sometimes stop us working doesn’t mean we are always completely honest with ourselves. However, faced with limitations, one has to acquire a more acute gauge of what one is capable of, and when, in order to achieve anything at all. The more ambitious the person, the more likely they are to in fact have an inflated perception of their capacities, and be forever berating themselves for not doing as much as they imagine they might.

One has, therefore, little option but to trust oneself. One may not be a perfect judge, but there’s nobody who is better-placed for this role.

So how to impose order on the most disorderly, changeable impairments…

The easiest way I found to deal with my changing capacities was to write down a number next to the date on the calendar or in a diary. This is a number out of ten which measures your functional capacity on any given day. 0 is a day when you lay in bed staring at the ceiling. 5 is a day when you were able to do some things and 10 is as good a day as you ever get. Once again, this is never going to be a perfect science, so you just have to go with how you think you’re doing, write a number down and think no more about it.

This way you have a picture of how things are going generally; doesn’t matter if you scored an 8 on Thursday, if the rest of the week was all twos and threes, you know it’s not going so well. As soon as you identify a trend that you think may effect your work, you act upon it. For example, you warn your tutor that you’re not doing too well and should things continue as they are, it’s possible that you will need an extension on that assignment due in two weeks from now.

It is very important to warn people you are answerable to at the earliest opportunity – even if things could change for the better and you might have no trouble meeting the deadline. It is far better to risk being seen to have been unnecessarily concerned that to phone up the tutor the day before the deadline explaining that you’ve been unwell for the last three weeks. It is far better to be honest in anticipation - at least as much anticipation as one can have in these circumstances. That way on occasions when you do have some last-minute health crisis, you will be trusted and perhaps more importantly, you won’t have to worry about being believed.

If you need to work with smaller time frames, you can have a different score for AM and PM, or even divide your day into three or four hour periods. Just to apply some objective measure to a highly subjective and chaotic situation. It is not perfect, but imperfection comes with the territory.

Unfortunately, this is more complicated when the upcoming deadline is an exam. There is sometimes the option to sit the exam - if you can physically sit it - and then retake it if you did very badly. There is sometimes the option to retake it a few days, a week or a month later than everyone else. However, sometimes the only options are to sit the exam now and get whatever grade you're going to get or else retake the entire course - which might be a semester or a whole year.

It all depends on the individual and the particular circumstance - if you only have to pass an exam, and that grade doesn't have to count towards anything in the future, then you might as well sit it anyway and hope you scrape through. This is counter-intuitive if you are a straight A student, but there are only a few exam grades which you will ever be asked about once you are outside of education.

However, for some people, the sheer weight of the looming exam combined with a crisis in health is going to cause them so much trouble that it is worth whatever it takes just to postpone the exam and relieve the pressure.

Which brings me round to The Golden Rule of Being Reasonable:

There are always more important things in life.

There are very few academic qualifications or other achievements which are worth making oneself desperately unhappy over. There are certainly few exams or modules or assigments that are worth your tears. I shall resist making any comment about the specific value of Biblical Greek in the greater scheme of things...

However, it is fairly useless just to say that. The point is that if you face a challenge knowing that - knowing that there is no divine compulsion or obligation - then I believe you are far more likely to apply creativity to the way you go about things, look after yourself while you're doing it, and to do it to the very best of your ability.


Right, now I have got all that, 5th November and Incapacity Benefit out of my system, I shall now take my throat mixture and climb atop the wardrobe...

The only man to ever enter parliament with honourable intentions.

We watched V for Vendetta the other night and I though I ought to blog about November 5th when the date comes round. Only, I will hopefully be editing the final pages of my book come that time. So rather like posting about Easter in February, I’m going to post about Bonfire Night today. Long and factually-dubious history, I’m afraid, but really important history. I told you I was getting stuff out of my system.

The first thing to say about Guy Fawkes and the Gunpowder Plot is that Fawkes was a scapegoat. Robert Catesby was the charismatic mastermind and perhaps a far more interesting character, but he got himself shot before the authorities could touch him. They needed to vilify a living person; someone to be subjected to a very public execution. And Guy Fawkes was the chap who had been caught red-handed in the cellars of the Houses of Parliament, surrounded by barrels of gunpowder. His face fitted.

Fortunately, about to be hung, drawn and quartered, Guy leapt off the scaffold and broke his neck, resulting in a gratefully instant death. Phew! His surviving accomplices were not so lucky.

Now, this is a four hundred-year-old failed terrorist plot. Is it relevant to anything today? Well there are two answers to this. The first is that very few revellers attending bonfire parties will be considering what a “joyful day of deliverance” it was when King James escaped assassination – nor are they likely to be burning effigies of the Pope as they did in the early celebrations. But the annual moral panic about the dangers of fireworks has become a tradition in this country; it’s part of what makes us British.

The second answer concerns the usefulness of history. And yes, I think this is a very important period in history which has resonance in our times.

Everything changed on 5/11. Even America changed.

With hindsight, the division of the Christian Church would seem inevitable. Non-conformist ideas were almost bound to spring up here and there. But perhaps more to the point, the Roman Catholic Church was so huge with so much power that sooner or later some monarch or other was going to resent that power and break away.

However, the Tudors really didn’t do the English people any favours. First of all there’s Henry VIII, who might have been a good Catholic had he been able to keep his hose up. But he couldn’t, and we broke away from Rome. Then under his son Edward VI things get a bit more radical. Then of course Mary comes along and starts using Protestants as kindling.

Elizabeth I is the other way inclined and being Queen for forty-five years, at least offered something like stability. Unfortunately, by this time you have very serious sectarian divisions. People on all sides have seen persecution for believing what they believe. Some Protestants are edging towards Puritanism, believing that Elizabeth’s reforms haven’t gone far enough. Many Protestants regard Catholics as traitors. After all, we are spending a fair amount of time at war with Catholic Spain and Ireland, and when Elizabeth was excommunicated, the Pope stated that any Catholic who took her out was absolved from the sin of murder.

Elizabeth dies without any children or surviving siblings in 1603. And the strongest (if not the most logical) candidate for the throne is her cousin three times removed, James VI of Scotland. He is the son of Mary Queen of Scots; the Catholic Queen who attempted to depose Elizabeth as the Queen of England – a threat that Elizabeth had responded to by chopping her head off.

So it’s 1605 and we have James I of England, VI of Scotland on the throne. Shakespeare’s latest is showing at the Globe, Francis Bacon has just published The Proficience and Advancement of Learning and The King James Bible was in the pipeline.

Now James I and VI was famously described as "the wisest fool in Christendom". He stuttered, swore a lot and was open about having male lovers. Generally folks who met or heard him speak thought he was a bit thick. However, he was actually quite bright; may well have been one of the more intelligent and well-educated monarchs we’ve ever had. And I think he may well have had a genuine desire to see peace between the Catholics and Protestants, only to be let down by the people around him.

After all, there was no legal way of practising the Catholic faith in England at that time. A person would be fined for failing to attend the Church of England services and to attend or organise a Catholic Mass could result in imprisonment. All Catholic clergy had been ordered out of England in 1604. Plus you have all the side-effects of being treated as disloyal to your country on account of your religion; Catholics were more like to be stopped and searched, subject to raids on their homes, detained without trial and so on.

But the Gunpowder Plot wasn’t simply a response to persecution. Some Catholics believed that this Protestant malarkey was total heresy and England should be restored to a Catholic country as soon as possible..

So it was that James I was going round in a special padded doublet to protect him from assassin’s knives and there were various plots to force change before Robert Catesby got his band of friends together and planted thirty-six barrels of gunpowder in the cellars of the Houses of Parliament, ready for the King's arrival. And although the gunpower was successfully defused, this was the metaphorical spark that lit a metaphorical fuse which would lead to the world being turned on its head. Metaphorically.

It can’t really be said that the administration exploited the failed terrorist attack for all that it was worth; many Catholics were horrified at what had been planned and James himself conceded that it was the work of an extremist minority. However, life was undoubtedly made more difficult.

The bit most relevant to American readers is that all religious separatists were targeted in the crackdown that followed. Thus it was in the direct aftermath of the Gunpowder plot that a group who later became known as the Pilgrim Fathers decided to clear off out of England. So if it wasn’t for Robert Catesby and the Gunpowder Plot, North America might look very different indeed.

Back in England, within a generation, civil war erupts. Civil war with all its associated horrors; neighbours and family members turned against one another, no household in the country remaining unaffected. Regicide is committed, only by Puritans who accuse James' son, King Charles I, of being a Papist Sympathiser (among other things). Not that the English Civil War was purely about religion by any means, but it was certainly a big part of it.

We get a Republic under Oliver Cromwell who cancels Christmas in 1647, bans dancing, swearing, any form of gambling and take a very dim view of non-religious art and music. But it was not long before the man literally bores himself to death (malarial fever, my arse) and we soon restore the monarchy*.

But we did learn our lesson. For one thing, we put in place what was probably the closest thing to a democratic system of government that existed anywhere else in the world – not recognisable as democracy today, but it was a significant step towards it. And whilst religious Catholics and other non-conformists did not get an easy time from there on in (the last person to be imprisoned for Atheism was convicted as late as 1842), we necessarily developed something like religious pluralism.

After all, the Civil War which everyone had fought believing God to be on their side was rather inconclusive. All these little religious groups sprung up, folks deciding that an entirely different course of action was necessary; thus folks like the Quakers and Methodists and many lesser known, long since declined denominations. And we all lived happily ever after. More or less.

Neither Guy Fawkes nor Robert Catesby or any of the others can be considered heroic, even if folks still joke about wishing to blow up Parliament today. Had they suceeded, it seems unlikely that they could have restored Catholicism in England or gained equal freedoms to worship; more likely the Catholic minority would have been all but wiped out in retaliation.

However, I do think there are important lessons here about religious toleration and the way that we respond to terrorist threats.


* Oliver Cromwell was in fact one of the most interesting people in British history, but he was still a bloody killjoy.

Free Money

It is received opinion that a significant proportion of people on Incapacity Benefits are malingering; that is, they are capable of work, but choose instead to live off benefits instead. The stated ambition to get a million people off Incapacity Benefits (more than half of the current beneficiaries) suggests that the government at least wants us to believe this is the case. And listening to the conversations that arise among ordinary folks, it certainly seems a commonplace perception; a lot of us are simply on the scrounge.

But we're not. I don’t know of course, there are surely some malingerers out there and certainly reforms are needed, including changes which would be of genuine help to disabled people to enable them to work or at least do some work. A major flaw with the current system is a failure to acknowledge any middle ground between the working-week and the scrapheap; it is often safer and financially more rewarding to do nothing at all than attempt a little bit, if a little bit is all that a person is capable of.

However, the idea of widespread malingering is damaging to all disabled people. And I know it is the height of vulgarity to talk about money, but I am afraid the only way I can argue against this untruth is with the use of gratuitous maths.

I have to simplify this a bit, because the benefits and tax systems are immensely complex and individual’s personal circumstance can vary widely. Once I made the assertion that it always pays to work and someone replied with their own figures, which incorporated a significant private pension. However, I don’t feel that it is those in receipt of ill health pensions who commonly stand accused of malingering; after all, these folks have had to prove to a commercial organisation that they are not only unable to work, but they will never be able to work again.

The stereotype of the malingerer would be someone of low socio-economic status who is unlikely to be able to earn a great deal of money in any case. So we’ll go with the stereotype. I shall also make them single and childless for simplicity.

The minimum wage for people aged 22 or over is £5.35 an hour. So say I do a 40 hour week at minimum wage – a rock bottom job - that’s £214 a week. According to this tax calculator, I would be left with £179 after tax and NI.

If I were a single person and a tenant (after all, £179 does not pay a mortgage), I would be entitled to Housing Benefit. I would receive my ‘eligible rent’ (i.e how much the council think I ought to be paying for the minimal standard accommodation) less £23.35.

This leaves me with a net income of £155.65 a week after rent.

The highest rate of Incapacity Benefit (i.e that payable after you have been unable to work for year) is currently £78.50 a week. People on Incapacity Benefits are not eligible for Income Support or any other concessions like free prescriptions. There are other benefits that disabled people claim, but none of these are related to capacity to work.

If I were a single person and a tenant, I would receive my ‘eligible rent’ less £7.40, leaving me with a net income of £71.10 after rent.

Thus, it pays to work. Earning the absolute minimum a person can earn full time, it pays £84.55 a week, or four and a half thousand pounds a year. Which is significant. Plus, all the non-financial benefits and freedoms associated with being in work. Which are also significant.

Arguably, people in work have more expenses, such as transport and buying suitable attire. However, people out of work have to find things to do with themselves all day, every day, and we could argue about exactly what the precise difference might be until the cows come home.

But, there are three important points about this which may explain why some people may be on Incapacity Benefit when they shouldn't be:

1. It may be better to be Incapacitated than Unemployed

Jobseeker’s Allowance (Unemployment Benefit) stands at £57.45 and is paid on condition that a person signs on every week. People on Jobseeker’s Allowance must prove that they are looking for work.

So, a long-term unemployed person stands to gain up to £20 a week (after a year), and free themselves from a great deal of hassle if they can prove that they are unable to work due to ill health. Being disabled does not necessarily mean a person is incapacitated for work, but if poor access and discrimination make it difficult for them to gain employment, then one can have some sympathy with their choosing to claim that their health problems are more limiting than they actually factually are.

Disability is not the only factor in this; folks subject to age discrimination or people living in areas with very high unemployment could also succumb to this temptation – if indeed they haven’t been actively encouraged by authorities wishing to reduce unemployment statistics.

Also…

2. Most fraud involves claiming Beneift and working anyway.

This is the only way that fraud could actually pay; there’s no economic reason to stay at home on benefits when one can work, but if one is fit enough to work, one has managed to wangle a successful claim for Incapacity and one has one's moral fibres in a tangle, there is money to be made by playing the system.

However, the truth is that folks who do this are probably not that organised or calculating. I imagine the sort of thing that happens is that a person is genuinely incapacitated for a period of time, but their condition improves, they go back to work and simply neglect to inform the appropriate agencies of the change. If they are hard-up, they may feel that they simply can't afford to let this money go. But it is a great naughtiness and folks who do this risk prison.

And…

3. Some people believe everything they read.

If a person were to believe everything they read, they may well think that a life on benefits is a life of luxury. If such a person was not very good at maths, then they might well consider giving up work and feigning a medical condition in order to enjoy the delights promised to them. Well, it could happen...

..................
On the subject of fraud, Morning Star has some news about Blue Badges, which I haven't seen mentioned anywhere else.

Preparing for battle

Well looks like I'll be battening down the hatches for October and making what I hope will be the final assault on my book. I am very much heartened by your support; I am amazed that after all this time, anyone has any faith in my finishing the thing. I am hoping to get everything else finished and up to date between now and Sunday (which is the 1st, I know, but if I start then I start a few days ahead of the plot).

I think I should be all right. I think the pressure might help me to be stricter with myself. One of the problems I have with over-exertion is my attempts to do several different things at once. It seems my expectations have never adjusted to my limited capacity. However, if for six weeks I only allow myself to do this one thing, I might find it easier to rest and pace myself.

Shan't give up blogging for six weeks. Habits may change, but I'll work something out. In the meantime there are a couple of things I want to get out of my system. Not today though; the living room floor is strewn with MDF, hessian and pots of paint. I have a little job to do...

There's going to be a carnival

Penny over at Disability Studies, Temple U. has launched a Disability Blog Carnival!

She is hosting the first one on 12th October, Blue has already volunteered for the next one. You can submit entries (posts you have written or other people's posts you recommend) by clicking here or over in the comments at the Disability Studies blog.

It's all part of my autumn almanac

I have it my head, now you can have it too.

The plot of my book covers a period of time which starts on the 4th October and ends on the 8th November in bloodshed and orgiastic mayhem. So I am thinking, I may lock myself in the attic* with a bottle of Absinthe** and attempt to edit the text concerning each day as each day passes, and then have my book finished for mid-November.

Given that my book is about 120,000 words long that's... well I'll be looking at about 3400 words a day, but this is editing, not writing. Although there are some bits that need rewriting.

Thing is, I keep struggling and getting real despondent. Illness and pressure don't mix too well, but I need to do something dynamic now or else I will start wandering towards the dark place. I am fed up of being a struggling novelist. I want to be a novelist.

The thing is basically written, I just need to get it to a stage where I don't feel like throwing up every time I consider the possibility of someone else reading it. Which is, quite honestly, the current state of affairs.

Only, should I risk it? Should I risk pushing myself into relapse at a time when I seem to be doing better than I have been in ages, when finally my health seems to be moving in the right direction? I have a history of such reckless behaviour and suffering the consequences

Then again, is it any risk? Perhaps I am umming and ahhing about this, entirely reasonable and harmless idea, simply because I am afraid of facing the endgame?

I could get everything else out of the way before the 4th October, clear the decks. And we'll probably head south again around the 8th November, so I will have that break to look forward to.

The idea of entering my 2007 with my book still unfinished is pretty damn depressing. I want to enter 2007 seeking publication.

I just noticed this is my 400th post. Oh dear...

* We don't have an attic, but I can lie on top of the wardrobe.
** I can't drink on my pills but I have this stuff for sore throats.

One finger, one thumb, keep moving

Something rather good is happening for me just now.

My pain levels have gradually reduced during the summer. The most significant thing to effect them seems to have been that period when I was sleeping most of the time. Although I felt pretty dreadful, it seemed to give my muscles a proper rest and they are now much more comfortable.

I made a decision that, having come off the Ibuprofen to save my insides, I would forego reducing my medication any further and use what ground I have gained to try and get a bit stronger. Thus, the sheer ecstasy which is exercise.

And it is ecstasy. Dopamine, phenylethylamine, testostrone, corticotropin… can’t remember any of the others. Something beginning with N no doubt, coursing through my veins. And this long-forgotten feeling in my muscles, this feeling of strength. Not strength as most other people would experience it, I'm only talking about the lightest of low impact yoga, but less weakness.

Any pain reducing effect is somewhat outweighed by the exertion-induced increase in pain, but these things, together with the increased blood-flow to my brain allow me to think more clearly. Wonderful stuff. It has a knock-on effect to everything else. Being just a little more active has lifted my fatalism about my weight, made me feel better about my body generally. The effective dispersal of adrenaline is making it easier to do the pacing thing, to rest properly. And of course, stronger muscles, better circulation and all these groovy endorphins can only have a positive effect on my overall health.

All this serves to make me very much more conscious of what a bastard it can be when this isn’t possible, when almost any physical activity does more harm than good. Which is a situation I have had my fair share of in life so far.

However, for those who can do it without significant limitations, do it. Not to lose weight, get sexy muscles or because the government says you ought to, but because it is a real sensual pleasure you have available to you and you might as well make the most of it while you can. Especially if you can do it outside and for free.