Saturday, September 30, 2006

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...

Friday, September 29, 2006

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.

Thursday, September 28, 2006

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.


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.


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.

Wednesday, September 27, 2006

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...

Tuesday, September 26, 2006

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.

Sunday, September 24, 2006

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.

Tuesday, September 19, 2006

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.

Thursday, September 14, 2006

While I'm here...

Two posts which warrant extra special particular attention for somewhat different reasons.

Unreliable Witness - Three months, not a lifetime

The enigma returns to tell his dramatic tale.

Charles Dawson - Father, Dear Father, You've Done me Great Wrong
Charles' powerful post about emotional abuse.

The Truth, the incomplete Truth and perhaps not exclusively the Truth

In the comments to Monday's post, Sly Civilian wrote;
“…I think social change can be (and by definition, has to be) fuelled by power. Whether that is state power formally expressed, or cultural power emanating from popular figures and examples...I don't know of a structural difference between social and legal power that would make one successful and the other fail.”
My answer kind of goes back to basics...

I believe that absolute moral truth exists; I believe that there is an optimum way of making decisions, living life and running society. Only, never having entered into conversation with a burning bush, I do not have the privilege of really truly knowing that what I believe is the truth.

Not to be undone by my uncertainty, I do think there are ways in which we can at least attempt to make the best moral decisions. And on a social and political level, I believe there are ways in which a society and individuals within that society can be given the greatest opportunity to get things right.

Some people in this position may think, well I have a pretty good idea what is right, so all I need to do is to get everyone to do as I say, by whatever means necessary. In theological terms, this would be the idea that it is possible to save someone’s soul from the outside; make them do the right thing, prevent them from sin (tickle a confession or two out of them) and they’ll be just fine.

Other people think, well I have a pretty good idea about what is right, but I have only come to this through my own powers of observation, reason and rummaging about in my own conscience. It is entirely possible that at least parts of what I believe may be totally wrong, partly wrong or otherwise incomplete. I need to keep looking at this and thrashing out these ideas out with other people whom I may learn from and indeed, who may learn from me.

In theological language, this would be the idea that everyone is responsible for his or her own soul, that only through faith and reason can an individual be saved. All we can do for one another is share our ideas. My friend Mr Locke had something to say about this.

Now in order for society to work, we cannot allow people complete freedom to make their own moral mistakes, since their wrong-doing can and will impact on everybody else. But I happen to believe that by giving people as much negative freedom as possible, we are more likely to come closer to the moral truth - as individuals and as a society. In other words, any law which removes negative freedom from anyone should be considered with the utmost caution. That’s what liberalism is.

Okay, so we want to maximise equality for people of different genders, races, sexual orientations and physical, cognitive and psychological capacities. The only way in which we can achieve this in such a way that it can be sustained, is by winning the intellectual argument. And in order to win an argument, we have to be engaged in an argument in the first place. We need to test and refine our own beliefs as well as challenging those of others.

When an act has become a criminal offence, the argument is no longer taking place. The court is asked to decide, not whether or not a person behaved in a reasonable fashion, but whether or not their behaviour meets a specific criteria. Bribery, for example, is a form of stealing, so a person is either guilty or not guilty – sentencing may vary, but there are no degrees of guilt in the verdict.

But discrimination, in a world where prejudices are extremely complex in their nature, origin and manifestation, is not a black-and-white issue. The question is not did she do X? but rather was X a reasonable course of action? The law (civil law) deals only with the more serious end of this. We are still having the debate. And we need to keep having that debate. It needs to go on and on until, by reasoned consensus, it fades into a murmur.

Wednesday, September 13, 2006

Wendy Houses

Well, the pacing seems to have fallen into place a little better since Monday and I have done at least some work on the book - not much, but what I have done I have been pleased with. Perhaps I need to build up my stamina as opposed to throwing myself back into it after all. I am at least getting other jobs done in the meantime, slowly but surely.

Unfortunately, I seem to be going through a stage of thinking up new projects. Many of them are orientated towards Alexander, and as such, really ought not to distract me just now when he is way too small to appreciate things like the Wendy House I now have detailed plans for in my head. It will be fabric around a frame and will be really detailed – like the roof will be quilted in tiers to look a bit like proper tiles. Most of it will probably be made of denim as I seem to have several denim items of clothing which have begun to fall apart, but ideally I would use as many different textures as possible.

Alternatively, I could simply buy a cardboard playhouse from Ecotopia, such as this Rocket and decorate it with paint. Would be far less complicated. Or I could finish get my book published, earn some money and buy a proper wooden playhouse like this.

Our Mum made a Wendy house which was a fabric sleeve that slid over the frame of our swing. It was made out of many different types of material, velour curtain fabric, bits of old dresses. And it really quite big; Dad used to come out, play with us and end up falling asleep in it.

Anyway, like I say, this really cannot be a distraction now. The little chap is a while off crawling yet.

Monday, September 11, 2006

Liberté, Égalité, Fratenité #3

The other anniversary today is of course the birth of Satyagraha, exactly one hundred years ago today. Satyagrapha was the method of non-violent resistance employed by Gandhi and friends against apertheid in South Africa and which eventually suceeded in outing the British Raj from India. The basic principles can be found here, the Wikipedia entry needs some cleaning up. And if you're really keen, you can read the entire book Satyagrapha in South Africa by Mahatma Gandhi on-line at the Official Mahatma Gandhi Archive.

Thought it worth a mention. And so continue my ramblings on the interaction between liberalism and egalitarianism. As I said a few weeks ago, the vast majority of issues facing disadvantaged groups in the UK involve a lack of positive freedom. Today I am going to use the example of disabled people.

It is unusual for disabled people to be enslaved in any way, but most of us have some difficulty being the masters of our own fortunes to the same degree as non-disabled people. In other words, it is not that there is (usually) anybody actively preventing us from living independently, getting jobs, having families and so on. But society often denies us the positive freedom to do so.

I am not talking about some strange utopia where the ladders on fire engines are made accessible for wheelchair-users. However, a related example: The fire-fighter Simon Hawkins did not return to active duties following a below the knee amputation. He regained his fitness, but because of his impairment, it was not considered that he would be able to go back to doing the job he used to do.

Now when I first read about this, I am sure the article I read referenced the Disability Discrimination Act and explained that following the Act coming into play last October, the Fire Service were effectively forced to allow Mr Hawkins the opportunity to prove that he still has the physical capacity to be a fire-fighter. However, I cannot find such an article and I wouldn't want to falsely accuse the Fire Service of being less than enthusiastic about Mr Hawkin's ambitions. But anyway, his family, friends and colleagues raised money for a state-of-the-art prosthetic and he did prove himself just as capable of doing his old job as ever he was. So now we have our first amputee fire-fighter in the UK, perhaps the first in Europe.

That's what I am talking about when I talk about to positive freedom. There was no rule that said amputatees are not allowed to be fire-fighters - there are rules about the physical capacities necessary to be a fire-fighter, but these are perfectly sensible. However, a few years ago it seems unlikely that Mr Hawkins would be even given the chance. But he was, and as a result he is (presumably) doing the job he loves and making a tremendous contribution to society.

Education is another very important issue in the positive freedom of disabled people. Education is one of the most important positive freedoms that exist; rarely are people actively prevented from getting an adequate education, but a failure to provide an education for a person effectively denies them all number of opportunities for personal development, lifestyle choices, income and all sorts, for life. And a lot of disabled people experience exactly that to a greater or lesser extent.

And just being made to feel like you are less than other people, or that your life is worth less than the lives of others is a pretty major infringement on positive freedom. But of course, you cannot directly legislate about how people are made to feel.

So, what to do? One way of solving this would be to take over the country with me as benign dictator, and I could put in all sorts of legislation which would begin to make things fairer for disabled people. Eliminating certain words from our language in the hope of eliminating the accompanying concepts would be double-plus good. Banning certain books and films which portray disabled people in a less than positive light would at least relieve us of The Da Vinci Code...

More seriously, how about positive discrimination which meant that disabled people occupied a representative one in seven posts in government and public service broadcasting? How about vigorous auditing of big businesses to make sure that they are doing everything within their power to employ and serve disabled people? How about moving the Disability Discrimination Act from civil to criminal law, making it a criminal offence to fail to make reasonable adjustments for disabled people?

Draconian rules would be effective, at least in the short term, in massively increasing the positive freedom of disabled people. But at the cost of a disproportional infringement upon the negative freedom of everyone. Society would have missed out on the opportunity for genuine development.

The truth is that at this stage in our history, society does not want to stop discriminating against disabled people. The argument is yet to be won. And coercion does not win arguments.

However, what the Disability Discrimination Act and other existing anti-discrimination legislation does do is to force people to listen to the argument. To me, this represents a tiny chink in our negative freedom which results in a significant increase in the positive freedom of disabled people in the short term and a tremendous increase in positive freedom in the long term. Nobody is forced to employ anybody, but for every disabled person who finds it easier to get a job now, you have another visable example in the workforce of how there’s nothing problematic about employing disabled people. This, in turn, will make it much easier for many more disabled people to get jobs in the future.

Similarly for every other hurdle disabled people face which can actually be touched by such legislation. Eventually of course, these knock-on effects should have supplanted the need for this small print in employment, commercial and planning law.

And this represents the relatively small proportion of the problem we face which can be dealt with through the law.

The rest, alas, is kind of up to us. We have to win the argument.

Sunday, September 10, 2006

I look at the floor and see it needs sweeping

My health must be reasonably good at the moment. It occurs to me that I have no idea what is happening in The Archers just now. This is always a good sign. But I am struggling to

(a) do this pacing malarkey, like what I said I would and
(b) get back to doing any work

The pacing thing I am simply appalling at. Some people take very well to that sort of thing; to arrange activities and rest periods in an orderly manner, to have timetables, lamenated itenery sheets and medication in one of those funny little plastic boxy things. I am not proud of the fact that I have a terribly absent-minded, disorganised nature, greatly exacerbated by illness. So I am having to do something against my nature.

On top of this, resting sucks. Even when I am really very tired, unless I am going to go to sleep, my brain is still churning over at a tremendous pace - all nonsense, total nonsense - and if I just lie down and go with that, it is a truly miserable experience. If I am capable of creating any distraction, any at all, then I do; a radio programme, looking at pictures, anything. But that's breaking the rules, see? And if I don't rest properly, my energy levels don't recover to nearly the same extent.

There's relaxation tapes and things which help, but I suppose the entire point is that I don't want to do this and I will keep making excuses and being frustrated by limitations which are greater than they need to be - limitations I have made for myself through ill-discipline.

As for the book. I don't know. I so want to get on and finish it. But because my health has been so up and down this last year, I am a bit scared really. I am afraid that I will get into it, get everything flowing, edge closer to completion and then get more sick again, have it slip out of my hands for the thirty-four thousandth time and then get really down about it.

I need to throw myself into it, but it's a bit like walking along a corridor in the dark. You think there's a door at the other end, but you're not absolutely sure and you're certainly not sure how far you have to walk. In the meantime, there are all sorts of obstacles between here and there, some of which you can get around, some of which may involve sharp spikey things at shin level and others of which involve chairs and tables stacked the height and width of the corridor and may hold you back for some time as you try to get through.

And once again, when paragraphs like that pop out of my fingertips, I wonder whether I ought to be doing something else with my time anyway. Even more so when I describe paragraphs popping out of my fingertips. Could I make it better if I changed the verb? Perhaps emenate from my fingertips. Uh, perhaps not. It is very late in the evening.

Tomorrow is Monday; another excuse for another fresh start.

Friday, September 08, 2006

Illness, Impairment and Disability

Following a discussion on Alas, A Blog (which took many twists and turns), Imfunnytoo wrote a bit about her own differentiation between illness and impairment. I have alluded to my own attitude towards this before when writing about the Social Model of Disability, but this is kind of how it goes for me:


My illness is something which is medically amiss. In my own case, I am ill in quite a classical sense; I get feverish, my lymph nodes swell up, I even have a sore throat very much of the time. But the main constants of my illness are pain and cognitive problems.

These symptoms cause me suffering. My physical existence in often quite unpleasant. It is possible that this suffering could become unbearable. And I willingly take various steps necessary to reduce that suffering; symptomatic relief and management which may create the right conditions for remission to take place. If I could take a magic pill and be well, I would in an instant.

I do not consider my illness part of my identity, any more than the fact I have knobbly knees part of my identity (uh, they are just a bit knobbly). And whilst my illness has been the root cause of all number of experiences and adventures, few of them have been unique to this particular disease, this particular medical event. I'm not giving it any credit for anything, the git.


My impairments are the functional limitations as a result my illness. For example, because of pain, I can only walk a short distance, I need to rest often, there are lots of things I cannot do without some sort of help and some things I cannot do at all.

I do not suffer because of my impairments. They frustrate me very much. However, I can interact with them in a far more positive way; I can find new ways of working around them, even reducing them with careful management.

Often people associate impairments with suffering because practical limitations are far more obvious than internal events. However, many people who have impairments but are not ill, especially when those impairments are congenital (e.g cerebral palsy, autism etc), will insist that there is no suffering associated with their conditions. It’s just the way they are and always have been.

I don't feel that way myself, but I have come to terms to some extent with the limitations I face, as opposed to the experience of illness, which remains an ongoing challenge. I hope that makes sense to someone other than myself.

My impairments are part of my identity, in so far as they dictate a great deal about the sort of life I live. My experiences and interactions with them have inevitably had an influence on the person I am. I share many of these experiences with other people who have various different physical and mental health conditions. Even if I got better tomorrow, these experiences would have a profound effect on the rest of my life.


Disability is the experience I have when my impairments interact with the world in which I live. The most obvious examples are always to do with physical obstacles; I can’t walk very far, I use a wheelchair, and the world has put steps in my way. But of course, it’s much more complicated than that; it is every way in which I face unnecessary social, practical or psychological obstacles.

Disability is the one thing on the list I can actively change, by examining my own attitudes and behaviour, making various practical changes and confronting the attitudes and behaviour of others.

Being disabled is part of my identity. It represents a political and social status which I have had thrust upon me like race or gender. I share this status and many accompanying experiences with all sorts of other disabled people, who have an enormous variety of impairments and life experiences.

I could attempt to deny it or else ignore it, but being the person I am, I attempt to address it, at least in my tiny wee small way.

Thursday, September 07, 2006

Oh, pretty boy, can't you show me nothing but surrender?

My feelings aren’t easily hurt by other people. I am sensitive to bad manners and disrespect, but that stuff merely disappoints me. There is only one person who persistently hurts my feelings. We’ll call them Ermintrude, for no particular reason.

The example I shall use is by no means the most powerful, but given my relationship with Ermintrude, I need to be very careful. Also, I had this in mind since whilst writing about blogging yesterday.

The other week, another member of the party we were with had congratulated me on my blog and we were discussing the relatively unique, powerful and pleasurable nature of blogging. Ermintrude interrupts with her disgust that she heard someone on the Today Programme being interviewed for no other reason than they were a blogger.*

“Can you remember a name?” I ask.

“Of course not!” she declares, “they were a complete non-entity.”

“Well, you might not have heard of them, but they must have been there for some reason.”

“Probably because some pinko shirt-lifter at the BBC is their friend and said, ‘Ooh darling, he’s such a gorgeous blogger, you simply must have him on!’.”

“Oh,” I say. "Well, a lot of other people read blogs."

“Nobody actually reads blogs. People might scan over them, but it’s not exactly reading material.”

Naturally I object, tell her that I read blogs properly and give some reasons why I enjoy doing so. Half way through this speech, Ermitrude resumes the activity that she had left to interrupt us.

Now, Ermitrude knows me very well, so by saying this she is telling me that what I spend a portion of my limited energy on several days a week is a complete waste of time; that nobody reads what I write because I (and other bloggers) couldn’t possibly write anything of interest. This and very similar exchanges cannot be considered some sort of pathological insensitivity.

She is intent on injury. It is also my belief, because I don’t like to think the worst of people, that phrases such as pinko shirt-lifter (and far worse) are used exclusively in my presence in an attempt to provoke me.

And this is a mild one. Other exchanges have cut significantly deeper.

Thing is, that if this sort of thing was representative of entire my relationship with Ermintrude, then I would simply have to arrange my life such that I had as little contact with her as possible. However, most of the time Ermintrude is perfectly pleasant, sometimes positively fun to be with. I love her and am entirely confident of her love for me. Only I can’t work out why she does this.

[...] says she does it because she likes having arguments with people. It is true that I respond by addressing her assertions, e.g people do read blogs. But these arguments can’t be won or lost since she does not play by the rules; she gives up and asserts that I do not live in The Real World, that I would see things differently if I had a job, a mortgage and so on. This or I am an oversensitive or hysterical – a theory confirmed if I show any signs of hurt or anger.

Again, I honestly don’t think any of it is meant. At least, I very much hope it isn’t.

But I cannot deny that I let it bother me. It bothers me that Ermintrude uses certain language and expresses certain sentiments which make my stomach turn – not just a disregard of "political correctness" but a deep-seated contempt for other people. And it bothers me that Ermintrude appears to wish me harm.

More than that; what she says has some limited success in knocking my confidence because deep down I long for her respect. Because she is all right. Really she is.

And I am grown up. And I don’t really know how to stop this - either to stop her doing it or to stop myself feeling the effects. Hmm. I have been thinking to write this for a while, I hope I don't regret it.

* I very much apologise to any blogger who was on The Today Programme in the last month or so who happens to be reading this. You are an entity.

Wednesday, September 06, 2006

Blogging Meme

Mark over at the 19th Floor tagged me with this last month. Apologies that it has taken me an age to get round to it.

Why do you blog?

To get things out of my system; ideas, emotions, bad poetry and all kinds of nonsense. I find it useful to clear my head of all this stuff so I can get on and do other things, especially when I am writing - otherwise all this gubbins invades the pages of my book. Also to communicate, just put something out there when I am feeling particularly isolated. The comments I get have meant a very great deal to me.

How long have you been blogging?

About eighteen months, since February 2005

Unkempt Madonna with the Demonic GrinSelf Portrait

This is not the most flattering picture of myself, but it does give me an excuse to post yet another picture of my gorgeous little rock star nephew.

Why do readers read your blog?

Morbid curiosity, perhaps. In truth, I have no idea why people read my blog because I have always posted on such a wide and somewhat random variety of subject matter. There have been times when I have thought, this is a useful medium, perhaps I ought to better utilise its potential as a political soapbox. Greater consistancy would undoubtedly increase my popularity as a blogger; I think the really popular blogs are those that cover the same subject areas most of the time, whether they are consistantly personal, political or whatever.

However, I suppose there is a readership for utter mish-mash. A great number of my hits come from poor innocents searching for goldfish-related information and landing on here by accident.

What was the last search phrase someone used to find your site?

legless tights

Which of your entry gets unjustly too little attention?

I don’t think any of them get unjustly too little attention, but there are a one or two which get unjustly too much attention, because folks have found them searching for all number of arguably rude words which I have managed to include in some entirely innocent context.

Your current favourite blog?

The Perorations of Lady Bracknell is quite possibly my all-time favourite blog. And would be even if her Ladyship was not a personal friend.

Which blog did you read most recently?

Rocky Spring's Blog. He has been painting!

Which feeds do you subscribe to?

I don’t read blogs by subscribing to feeds. But I use my own blogroll to browse through blogs so check them out.

What four blogs are you tagging with this meme and why?

I'm a rebel and I'm going to tag five:

A Girl I Used To Know because she sent me a lovely e-mail and I have been very slow in getting back to her.
Little Stitches and Did I Miss Something? because they've both written interesting stuff about the nature of blogging.
And This is My Blog and Life In the Shire because both Sally and Mary are having a hard time just now Memes are reasonably easy, low energy blogs to do.

Monday, September 04, 2006

Back To School

I have always liked this time of year immensely, even when it did mean going back to school.

Slight sense of panic that we’re suddenly two thirds through the year, and of course the immune system becomes far more vulnerable once the weather turns. But there’s a tremendous sort of freshness that accompanies our descent into winter (or the ascendancy of darkness, if you prefer). I think this is a far better time for new beginnings than in January when everything is very cold, due to get colder and so much of life is buried deep under ground.

Autumn is by far the most aesthetically pleasing time of year, at least in the British Isles; the most beautiful lights, the most interesting weather (frosts, gales, storms and shooting stars) and by far the best colours. The sunset crosses our living room windows from right to left. Similarly, we get by far the best smells; bonfires and that earthy, vaguely fishy smell following a good storm in Whitby. Even a little dampness and decay are by no means unpleasant when inhaled in the open air - and cool fresh air at that.

Now I'm beginning to sound a bit like Charles Dawson or Sally, who write far more eloquently about the changing seasons, spending far more time on the other side of the bricks and glass.

The pagans celebrate Samhain on 1st November of course, which marks the more realistic beginning of the new cycle. I like this concept, although it seems quite late in the day to me. It is a touch counter-intuitive on one level, but the things we normally associate with freshness and newness in nature are generally the realisation of processes that have already been happening for some time.

Anyway, we’re hoping to head back up North tomorrow and once home I’m going to be extra super disciplined, rest plenty, exercise in a more sustainable fashion, lose weight, become a better person, etc., etc.. Something like that, anyway, you get the picture. It’s only nine or ten weeks until we’re back in Suffolk again to celebrate our seventh anniversary, which we are, um, celebrating.

Apart from the joys of Alex, the other notable thing about our flying visit to the New Forest was that on the way back up round the M25, we saw a car parked on the hard-shoulder. Next to the car stood a priest, black cassock bellowing in the wind. And he was stood there, upright, facing the car and reading from a heavy-looking leather-bound volume that I can only assume to be the Bible.

“It’s not that odd,” says [...], “I mean, if we broke down we’d phone the RAC. He’s obviously got a different sort of cover and is simply making the appropriate call.”

Sunday, September 03, 2006

Feature: Another Nappy Ending

Rock-stars keep getting younger and younger. In this exclusive interview, the Goldfish speaks to Alexander, the lead performer in the upcoming Indie outfit Tinker and the Taylors about life, birth and the universe. Photographs by Daddy.

I meet Alexander in his New Forest residence, which he shares with his eccentric musician parents. The house is a modest bungalow, only given away by the trademark John Cooper Mini on the driveway. Alex’s mother shows me into the nursery, a well-lit room with kitsch, brightly coloured toys piled onto the shelf such as Octotunes and Tiny the Elephant.

Alexander seems much smaller in real life than he does in the publicity photographs; much smaller than you might imagine from his music; a blood-curdling cacophony interspersed with passages of monotonous gurgling, described by one critic as Death Metal meets Light Jazz, that has taken the world by storm. I ask Alex how he would define his unique sound.

“It’s a sort of plaintive wailing,” he says, “although there’s a lot of rage in there to; a lot of frustration. I think I say what so many babies have said or tried to say in the past. We’re hungry, sometimes we have a wet nappy, and sometimes we don’t know where Mummy is. We have all this to contend with and we have no real means of communicating that to other people. Most people forget what that’s like; they learn to speak and become complacent. As I see it, I am here to remind them."

There has been widespread speculation about the deeply political subtext of his work. For example, when listeners hear the track Daddy, my nappy is full, in which Alexander cries 'Aagh, Waagh, Aagh!', few can deny the oblique reference to the erosion of civil liberties under the Blair administration. But Alexander prefers his work to remain equivocal.

"People may take what they like from it," he says, "but as far as I was concerned, my nappy was full and I was a bit uncomfortable. I was merely trying to inform Daddy of the fact."

Until just a week ago, Alexander was living quite comfortably in the womb. This halcyon period came to an end when he was propelled out through the birth canal and into the world. Along with independent existence came instant stardom. I ask him what this experience was like.

“It was pretty bewildering, I can tell you,” he says “but I think it has had a big influence on me as an artist. I mean, I was so tired after – I’m still sleeping almost all the time and it’s been a whole week. But you have to remember that until I came out into the air, my vocal cords just didn’t make a noise. One could say that I had to go through that trauma in order to find some means of self-expression.”

Alex is very relaxed here in his home environment, and burps and passes wind without inhibition. In the other rooms of the house, there are dozens of pale blue cards sent from adoring fans, a clue to the flood of attention this young man has been subject to during his short career so far. Alexander isn’t afraid to speak candidly about the impact of this fame.

“It’s pretty strange to have to listen to people discussing the intimate details of your life – like how often you’ve had a poo and stuff. The female attention also gets a bit much sometimes. Lots of women I meet want to fuss over me, hold me and talk to me in high-pitched voices. Perhaps it’s a novelty for a rock star, but I am firmly a one-woman-man.”

So is there someone special in his life right now? Alex gurgles at the question. “Yes,” he says, “my Mummy.”

Indeed, despite the ferocity he expresses artistically, Alexander seems to live up to his paradoxical reputation for clean-living. He doesn’t smoke or drink and lives on an exclusive diet of breast milk, which is claimed to be good for a healthy immune system. “I’ve never had a cold,” claims Alex, “Not a single cold in my entire life.”

As for the future, Alexander is ambitious to build on his early success. He hopes to learn to walk and talk out loud.

“I think it will make my message clear,” he says “Right now, my work leaves a lot open to interpretation. If I had a few words, I could perhaps tell them what I want and thus get the things that I want a whole lot easier.

“I also would like to understand a lot more about the world. I’m hoping that pretty soon my eyes will be able to focus on objects for more than a few seconds and I’ll begin to work out, you know, what it’s all about.”

Alexander wouldn’t be the first rock-star to attempt to unravel the meaning of life, but no New Age Guru or fashionable retreat for young Alex.

“I don’t need to travel a long way in order to find myself,” he says, “I just need to work on my co-ordination and wait for my senses to fully develop.” He waves an arm about in a characteristically nonchalant manner. “I think I am roughly over here, somewhere.”