------------ ---------- Diary of a Goldfish: September 2007


Diary of a Goldfish

Wednesday, September 26, 2007

We could be heroes

I have decided not to say that I'm feeling a bit better, because I keep saying that whether or not it is true. I did however manage to finish this somewhat disjointed post, so it would probably be true today. Anyway, both Tokah and Elizabeth have been writing about courage and disability lately, and I wanted to add my pennysworth, even if I arrive at much the same conclusions.

The reason brave and its synonyms are such unpopular words among disabled people is that the concept is frequently applied to us by default, as if our existence demands courage. The classic account is where someone with a visible impairment is approached and told that they are "brave" by a total stranger. Which is offensive. Unless of course, they have left the house wearing fuchsia pink wellies and leopard-print leggings or something - that would be brave.

Impairment is something that happens to you or the way you happen to be, not something you take on. And I think in order for courage to exist there must be internal conflict; a person must be afraid and act against that fear. It's not just a matter of having the psychological equipment to do something; people say I am calm in a crisis, but this isn't because I am brave, only my brain doesn't work quick enough to muster up a panic. There are also behaviours and attitudes we can mistake for courage, perhaps especially in ourselves. Stubbornness, recklessness and even denial can feel like courage because we are having to doggedly overcome a deep inhibition - even if, on consideration, we might find this inhibition to be perfectly reasonable.

I think courage also requires some sort of virtuous purpose. The most admirable form of bravery is undoubtedly when a person overcomes fear for the benefit of other people, and the range of this can be enormous. I also think we can consider any act of genuine self-improvement (such as wearing fuchsia pink wellies) to be virtuous and admirable and arguable for the greater good of everyone.

At one point not, so long ago in our culture, we made heroes of people who went to some place uncomfortable and stuck a Union Flag in the ground. Such men went to the North Pole, the top of Everest, crossed desserts and oceans and dense jungle without so much as a loosening of the cravat. They were heroes, but these days a lot of similarly dangerous physical activity has become mere sport and as such, is not nearly so celebrated.

Unless those people have physical impairments. Now, physical impairment can be a major obstacle in various activities, but it is a purely logistical one. If you want to get a wheelchair-user across the Grand Canyon on a tight-rope, the principle issue is logistics. For this reason, a disabled person may need to be more determined in their efforts to partake in these activities, but they don't need an ounce more courage than anyone else doing the same thing. And as it is just a hobby, are we right to call it courage at all?

Yes, yes, yes, some of them are brave; some of them would meet my criteria, but point is that there is no default on this stuff.

On a similar theme, there's a particular reaction to impairment itself which is sometimes considered brave; "I'm not going to let this defeat me!" she cried as she got up and walked on her broken leg, resulting in the fall that broke her neck.

Dominant models of disability use the language of warfare to describe our relationships with illness (at least with serious illness; you never hear anyone say "I've just come out of a vicious skirmish with a verruca!"). Denial can very easily feel like courage; you lose sight of some fundamental differences between facing facts and giving in. Elizabeth recently mentioned those who "bravely" refuse to consider themselves disabled. And Nelson put the telescope up to his injured eye and declared, "I see no ships!"

But some of the most heroic of history have been about making peace with the enemy, acts requiring far more courage than it took to keep on fighting. Similarly with illness and a lot of life crises. In fact, since I just mentioned Nelson, he is also supposed to have said, when he was shot in the arm, "Let me alone: I have yet my legs and one arm. Tell the surgeon to make haste and his instruments. I know I must lose my right arm, so the sooner it's off the better!" as opposed to, "Gangrene schmagrene, my arm will be just fine!"

I think that it takes a fair amount of courage to accept the facts about ourselves, our lives and our limitations, but perhaps most especially, to accept this and the fact that our happiness remains in our own hands. Impairment is just one thing which can make a person feel that their life has been ruined. It is natural that people respond with distress to a crisis, but in the long term it can be tragically easy to accept discontentment. People do this all the time, feeling themselves condemned to a state of not being happy, because of some great disappointment, some failed potential or other. Occasionally, individuals who vehemently argue for their impairment as a positive part of themselves will nevertheless argue that disability ruins their lives, since they can't get a job and nobody likes them, everybody hates them and there isn't a ramp down into the garden so they can't even go and eat worms.

So people who have good lives, despite taking blows that could have destroyed them - or simply turned them into miserable bastards - are heroes. And I do know a fair few of these who happen to be disabled.

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Wednesday, September 19, 2007

Booky Meme

A little sparkier today. At the weekend I was tagged by Diddums for this Booky Meme.

Total number of books owned.


Some. No really, I guess about 300. I attempted to count them, but not only is this a very difficult task for me just now, but our books are all mixed together and I shan't lay claim to books about PHP, Fedore Cor 6 or Apache Redhat. So I guess about three hundred are mine, which doesn't strike me as too many, but I tend to recycle (give away or sell) any that I have read and don't want to keep for reference or rereading.


Last Book Bought

The Consolations of Philosophy
by Alain de Bottton.

I've just started reading this now, it is very good so far. I do like Alain de Botton. He is a rare individual writing about philosophy today who does not either ascend up his own intellect nor descend to fluffy vagueries. It's practical philosophy, but philosophy proper; exercising reason in order to understand our world. Anyway, I haven't finished this book so it might let me down half way for all I know.


Last Book Read

The Attack of the Unsinkable Rubber Ducks
by Christopher Brookmyre.

Christopher Brookmyre is another hero although for completely different reasons. The one living author of whom I have read every single book. I usually wait for the paperbacks but after Jack P went to a book signing, and out of sympathy for myself (which would be, uh, self-pity) I treated myself.

The book is about a formal experiment to see whether or not the claims of a famous and controversial medium are valid. If they are, this could change everything about the way that science is understood. If they're not, then how is the guy pulling it off? Naturally, there are dead bodies and political intrigues along the way; it's very good.


Five Books that Mean a Lot to You.

Tried to think of five I haven't sung the praises of before now, but as I'm tired and rambling today, I'll cheat and give you three. Having mentioned the guy already...

1. Quite Ugly One Morning by Christopher Brookmyre

Picture the scene; it's 1996, the scene is Rosehill Library in Ipswich, I'm fifteen years old and I've decided that I will never be able to read for fun ever again. I like mysteries and adventures but most of these books are rubbish. Not because I'm fifteen, but because genuinely, most of them are rubbish and I have developed a very low tolerance for pretension and cliche.

Some red and black books with a colourful one in the middleSo I'm staring at the black and red spines of the Crime & Thrillers shelf (it's not a very big library). I tried to give you a pictorial reconstruction of what I saw, but the red and black books I own aren't really the sort of thing. You have to imagine they all have faintly sinister titles like Satan's Earlobe, thriller titles such as The Mortage Indemnity (you know, the one about Jason Mortgage, who has forgotten who he is but the CIA are trying to kill him all the time?) or cryptic titles such as Dying for a P.

Come on, you have also read these kind of books; you too know they're shite.
In any case, Quite Ugly One Morning stood out a mile. The first line was 'Jesus Fuck.' which seemed to bode well. And this book became extremely significant, not because of any profound content (there isn't any, it's really not a great book and if you can read the first chapter and hold down your breakfast, you're a better man than I'm not). But it is very funny, but without losing the dramatic tension. It is extremely graphic and gruesome, but... well one day I may bore you with my theories of disgust, but suffice to say it was within my tolerance. It is also an adventure story involving fairly ordinary people and places, if rather extraordinary circumstances - which to me is the best sort of escapism.

Not only did Quite Ugly One Morning restore my faith in reading fiction for fun, but it also showed me that people can write new books. I mean, like I say, nothing profound, but the way Brookmyre writes is unique - something you can't say for a lot of writers, even the most popular. I think until that point I had imagined that story-writing required a great many more conventions than the beginning-middle-end rule.


2. The Second Sex - Simone de Beauvoir

When I was a kid (very nostalgic this Meme; I'm still in bed), I was a tomboy and a bright one and thus was perfectly aware that the way that boys and girls, men and women were regarded and treated was completely unfair. Then I had my Teenage Angst and began to suspect that my entire sense of injustice about sexual inequality was just me; perhaps if I was a proper pink ladygirl who didn't fancy girls, it wouldn't be a problem. I didn't seek out feminism texts and when I came to de Beauvoir via her fellow existentialists, The Second Sex was a tremendous relief; it wasn't just me after all!

I can't recommend this doorstop as an introduction to feminism, although written in 1949, it can probably be considered the first ripple of the Second Wave; i.e once most Western women had or were just getting the vote but still very unequal rights in employment and marital law. But regardless of the content, she's just so smart; like any great polemicist, you kind of forget your are reading arguments which you might want to question and get completely carried along with the woman's passion. And much less self-absorbed than her lover, Sartre.


3. Crime and Punishment - Fyodor Dostoevsky

Crime and Punishment was the first book I remember reading which explicitly asserted that there are no good people or bad people, only good or bad behaviours. This is much easier said than believed and I hadn't really bought into it before then. There were things, for example, that I would never do, never ever do. I guess I took what is a fairly dominant idea that in order to do something really bad, to commit rape, another serious assault or murder, one has to have something missing. The language of - if not the explicit assertion of - mental illness is frequently used and abused when we talk about violent crime.

But I read Crime and Punishment during a spell in bed, and in my literally feverish state I was completely carried along with Raskolnikov, I felt his poverty and frustration and I realised that I would have taken an axe to the miserly old biddy given half a chance. I too had the mind of a killer!

Having a taste for detective stories, I am always baffled by the delight some authors seem to take in present the most unhinged, eccentric murderer one could possibly dream up. I have read so many books and sat through so many movies, stuff that seemed serious and intelligent throughout, right up until it emerges that it was the Generic Crazy Person what dunnit - worse, the Generic Crazy Person who cackles during their confession.

What I find far more interesting, dramatic and terrifying is someone who really isn't so different from you and I, but who makes choices we have not made. That's what I consider thrilling. Ha ha ha! Ha ha ha! Ha ha ha ha ha ha ha! (That was a cackle, by the way).


Anyway, three is enough for me for now. I tag S., Elizabeth, Sara, Sage and anyone else who wants to do it.

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Thursday, September 13, 2007

The Goldfish Guide to Chemical Addiction

Seahorse has written frankly about her chemical addiction to various prescription medicines which in turn give her demoralising side-effects. I had some thoughts on this and was writing a comment when I realised it was getting too long and rambling. And sometimes I feel it may be worth posting the sort of advice which may or may not be of use to very few people in very specific circumstances just in case it helps.

The word addiction can mean several different sorts of things. In this case, I am merely talking about the effects of withdrawal when you have been on a stable level of a drug for many months or years. Addiction in a formal sense is usually where someone needs to do something more and more in order to feel okay and this is generally a manifestation of ongoing emotional distress. This isn't about that.

Personally I am hypersensitive to drugs; I tend to get quite severe side effects and if there are dramatic contraindications to be had, I'll probably have them. This level of sensitivity also makes it difficult to come off drugs once I'm on them. I don't experience any psychological addiction so far as I know; I haven't yet found a drug I found comforting to take (except possibly caffeine), but I have had some pretty gruesome physical withdrawal symptoms. So...


The Goldfish Guide to Chemical Addiction and Coming Off Prescription Medicines.

1. Work out why you're doing this
Being drug-free is not necessarily an ideal state to be in, especially if you have chronic ill health. There is a danger in buying into the idea that all the pills we digest are causing us more harm than good and we ought to be able to live long and feel fine and if we nothing but papaya (or whatever fruit is supposed to have magical properties this week). Most people who are coming off a drug they've been on for a long time will have thought about it carefully, but it is very important to keep in mind exactly what one wants to achieve from this. It has to be a little more than drugs are bad. The most common and sensible objective is probably, "I want to see whether or not I might actually feel better if I wasn't taking this drug."

It should always be an experiment, unless you know for certain that the drug is doing you more harm than good. In order for an experiment to be worthwhile, you must monitor your progress; diarise a few weeks beforehand,


2. Get your doctor onside.
If you are taking powerful drugs and a doctor thinks you've simply become squeamish about them - especially if these are mind-altering in any way - a doctor may be reluctant to help you come off them. And you do need support, at the very least. Often people do drop drugs for ill-thought-out reasons, so this stuff has to be framed in a way which convinces the doctor this is a good thing; talk of the progress and positive effects that coming off the drug is likely to have as opposed to your distaste for the drug and its side-effects. I feel that doctors react especially badly if you have become frightened by potential effects of the drug; you're kind of saying, "You put me on this, but you didn't consider the long-term implications, you cad!"

Ideally, the message you want to get across is, "You put me on this and it helped for a period, thank you. But I'm wondering if the next positive step would be to see whether or not I can do without it, which might improve my [insert capacities you feel are impaired by the drug]?"


3. Avoid Cold Turkey where possible
Cold Turkey can be effective for certain sorts of addiction, especially behavioural addiction (e.g. gambling) or addiction to recreational drugs where there is a large social or psychological element. Also when you're in good health. When you are chronically unwell and the addiction is a matter of chemicals, then Cold Turkey is dangerous; if you feel suddenly unwell, it is impossible to know whether this is completely unrelated, whether this is withdrawal or whether the drug was doing an important job after all. It is especially dangerous to completely stop a prescription drug you've been on for a long time without talking to a doctor first.

Of course, if you know the drug is doing you harm and you have to stop in an emergency, there isn't a whole lot of choice. That stuff you just need to ride out, alas.


4. Investigate Increments.
You need to reduce a dosage by the smallest increment possible. Sometimes it may be useful to break tablets in half or get prescribed a few different doses at once in order to minimise the effect of withdrawal. For example, if Magic Wonderpill is available in 15, 30 and 60mg capsules and I'm on 120mg a day, then ideally I want to able to reduce my dose by just 15mg at first - which means taking one of each different dose (totaling 105mg). Doctors can and will prescribe drugs this way, especially when it is seen as progress in your health, but you often have to suggest it and ask about what doses are available (unsurprisingly, doctors don't keep all of them in their heads and generally have to look this information up).

Another way of working with some drugs is to take miss every third dose, then every other dose or something like that. I've not seen that work. A close friend once did this with fluoxitine (Prozac) and although he was coming off it because he was no longer depressed, I could tell which days he'd taken it. His moods were more consistently good once he was off it completely.


5. Give yourself Time.
Different drugs take different lengths of time to enter and exit your system and your system in turn takes different lengths of time to get used to the new situation. Every individual is unique, and the chances are that an unwell body is slower but more sensitive in its response to change. You might need just a few days for your system to grow accustomed to each lower dose, or you might need a month or so.


6. Plan and medicate for Withdrawal Symptoms.

You don't have to be drug-free, so for example, be prepared to take what you need to lessen the withdrawal symptoms. Headaches seem massively common, so make sure you're not expecting yourself to be in noisy or bright environments, and take aspirin (or whatever) if you need to. There are all manner of herbal teas and tablets which can help with symptoms such as the headaches, as well as nausea, bowel trouble, the shakes and so on, and sometimes it is appropriate to start taking them before the withdrawal begins.

Also, make sure that generally your environment, diet and exercise levels are as good as they can be to cope with the shock to your system and that other people around you know to keep an eye on you. Expect a period of lousiness, but set things up so you have as little to fear from it as possible. Whilst this is not a psychological addiction, symptoms of withdrawal can be made ten times worse by anxiety and preoccupation.

All these things will pass, sometimes within as little as a few days, but certainly within a fairly short length of time. Your system got used to this drug and it can get used to life without it. I have certainly been on drugs where coming off them has been like coming alive again after a period as a zombie; it can be very much worth the crap. However, always take care and always take medical advice on this stuff.

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Wednesday, September 12, 2007

Believing in Belief

In The God Delusion, which I subjected myself to during this recent down time, Richard Dawkins talks about the need for some of us who don't believe to nevertheless believe in belief. Some of us feel supernatural belief is a nice idea, we feel sentimental about the religions of our upbringing and culture, and fail to see the danger there within.

This suggestion woke me up somewhat. I'm afraid I wasn't keen on The God Delusion, but not for a particularly good reason. I read lots of Dawkins when I was studying Philosophy and I'm afraid I don't get on with his style. Goodness knows he has written about subjects which are of tremendous interest to me, but it's a bit like talking to a very elderly relative who you realise has a truly fascinating story, but who keeps being distracted and talking about the increasing price of jam at the Co-op or some such.

For example, he dedicated a good few thousand words to the taunt that Hitler and Stalin were atheists. It should have been enough to say that their personal take on the God question is completely irrelevant - if indeed, it was worth answering what amounts to a childish jibe. Hitler's diet is irrelevant to the ethical questions of meat-eating, but it's a commonplace wind-up to vegetarians to make out that Hitler was one of them. The vegetarian reply is not to insist that Hitler was a meat-eater, but to insist that their position is not about the virtues of the person, but the practice of eating or abstaining from meat.

The history of Hitler, Stalin and other dictators (most notably Mao) do raise important issues about the exploitation of religiosity, religious conflict and oppression. However, before Dawkins got round to mentioning this, he instead speculated at tedious length that Hitler remained a Catholic throughout his life. So what if he did? We already have Pinochet, Franco and Mussolini as examples of Fascist dictators who made themselves out to be Catholic, and it doesn't say anything much about Catholicism, let alone Theism that they did. Or indeed, the price of jam, which is up nine pence on last week. Okay, so there was a three-for-two offer, but who needs three jars of jam, I ask you?

Still, clearly this is just me and others get along with him very well. Amazing chap, really important work he's done, really important book this and my irritation wasn't such a bad thing; I wasn't very well at the time, and every time I threw the book across the room, it took me some time before I was able to get up and go fetch it. This helped to pace the effort of concentration.

Anyway, this believing in belief bit was interesting to me. In order to talk about this I'm going to have to be explicit about my own beliefs, which necessarily risk offending anyone who is offended by beliefs which are contrary to their own.

Thing is, I share Dawkins' perspective, which is a rigorously logical one; nothing can be said to be true which cannot be proven. Dawkins calls this atheism, I think I am more rigorous by calling it agnosticism; I cannot disprove the existence of God, only identify inconsistent claims about Him (of which there are squillions). It could be that God exists but human beings have got in a tremendous muddle on the matter - in fact, that's exactly what I believed as a teenager; I was lost to Christianity when I read the Bible, but God was still there for a while. Yet I am frequently frustrated by the way human nature (including my own) is inclined to blur the edges, confuse what we feel very strongly with what must be true.

However, I don't object to the religious beliefs of others; I have no desire to disillusion anyone who is causing no measurable harm to themselves or others. Despite my frustration, I am also fascinated by the part of human beings which invents this stuff; it is the same part which observes patterns, which seeks to understand the natural world and the human condition. I suppose I may even be sentimental about the Abrahamic or Semetic God; in a sense I regard Him as an imaginary friend, but He is a very valued imaginary friend of many of my friends and family and as such I feel compelled to formalise the pronoun. As Hedwig said when asked whether she accepted Jesus Christ as her saviour, "No, but I love His work.".

Anyway, Dawkins seems to argue that supernatural belief is necessarily a problem. Moderate religious belief provides the foundation for fanaticism, since it is irrational on whatever level; accepting and respecting one type of irrational belief leaves the door open to the acceptance of another, since it is impossible to discriminate between one type of irrational belief and another. There are a couple of problems with this.

The first is a non-sequitur. There are plenty of situations where moderate religious leaders and people simply do not do enough to condemn violent extremists within their ranks. This does make me very angry, but it doesn't follow that this is the nature of religious belief - there are plenty of exceptions to the rule. Meanwhile, there is often a harmful extreme to an innocent point of view. The vast majority of sensible football supporters are not responsible for the violent hooligans within their ranks, for example. Similarly, you can't take the likes of Martin Luther King Jnr. and say, "If it wasn't for moderate Christians like him, there wouldn't be a Klu Klux Klan."

Secondly, whilst all supernatural belief may be irrational, irrational is not always problematic. People carelessly compare religion to mental illness - Dawkins himself chooses the word delusion, but there is a fairly strict criteria for where an irrational belief indicates illness. There is a further strict criteria for where an irrational belief indicates that a person can't be relied upon to make decisions for themselves.

For example, if I think Jonny Depp is the best looking man on the planet (I'm not sure I do); do I need to be dissuaded if this doesn't stand up to objective examination? In fact, when it comes to liberty, religious belief is (somewhat ironically) very much like sexuality; it involves strong feelings which are outside reason, it involves complex arguments about nature and nurture, it involves practices which may seem ridiculous or abhorrent to outsiders, and it frequently involves dressing up in impractical costumes. However, through reason, we find it relatively easy to discriminate between those aspects of sexuality which are problematic and which are okay. What people think, believe or fantasise about, however distasteful or offensive, is entirely their domain. What people express publicly, what people impose on non-consenting parties is another matter. It's not that people cannot express their sexuality or religious belief pubicly at all, or be afraid of disclosure, or not 'flirt' with others like those Jehovah's Witnesses who were chatting me up earlier today, but there have to be boundaries to protect everyone's freedoms, since everyone is equally entitled to autonomy in these two matters. Does that make sense?

Thing is, I think people like Richard Dawkins are really important; talking about this stuff frankly and openly is a really good thing, even if there are flaws in his argument. The reason this is so important is that there is a serious and perhaps increasing conflict in the world over religion.

This is not a conflict between believers and non-believers. I don't even believe it is a conflict between two or more different religions. From a good few paces back, I reckon this is a conflict between those who reject reason and those who do not. A person who applies reason to these matters is always an ally, whether or not they happen to have any sort of 'faith', whether or not they have previously come to the same conclusions; we can at least talk to one another. And the more we do that, the more we are likely to defy those who mistake their feelings for the truth on those matters which affect us all.

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Friday, September 07, 2007

An Unbearable Weight of Non-Existent Responsibility

So now the down time is getting me down - even though I am still gradually picking up. Unfortunately my brain has entered a delightful phase of vivid nightmares and frequent waking, leaving me with three or four intact (if incoherent) dreams remembered every morning. This is exhausting. Especially as my subconscious seems to be stuck on the same record. This isn't the most powerful example, but it was one which made enough sense to put down without having to convince you that giant rabbits could be considered a real threat to human survival if you saw them in the same context I did;
I am running a library, which is open twenty-four hours a day. I am in charge and my only staff are a bunch of small and undisciplined children, who are no help at all - in fact they give me more work because I have to keep them out of trouble. Now this library, which is vast and inexplicably hilly, has been created by the kindness of members of the public who have donated books they'd finished with. Unfortunately, they've done this by simply placing old books on the shelves and there is no order to them whatsoever. I'm trying to work out the quickest and most sensible way of putting the books in some sort of order, at least by genre, without closing the library even for a half hour.

Meanwhile, a serial killer begins to operate in the library. I have to work out who is doing it and bring them to justice, at the same time as looking after my staff of children, who I am now very worried for. Also, the local mayor is coming to visit, so I also have to collect forensic evidence and shift the bodies which keep turning up, out of the way in record time so that the mayor doesn't see. Amid this chaos, I wake up.
This is typical. Sometimes it is far more dramatic; one night I was climbing down a ladder (found under a manhole cover outside a particular Catholic Church I know) which descended into the fires of Hell. I went down there to talk to Lucifer and see if I could convince him to lay off the human race for a bit. It wasn't that I was an important or powerful person who might have this capacity, it was just that if I didn't have a go nobody else would. And it was very scary.

I frequently have phases of these types of dreams when my health isn't doing so well. I've probably written about them before. The two features they always always have are
  • some massive central and pretty much impossible task I have to perform and
  • one or more small vulnerable thing I have to look after at the same time - this can be almost anything from a fetus in a jar (!) to a collection of hamsters without cages or suitable boxes to put them in.
Now, these are the sort of dreams I should be having if I was a world leader considering whether to go to war. But me, the Goldfish, couldn't exactly have less responsibilities. Apart from basic survival, everything I do, I do out of choice and nobody else is relying on me to do it. The heaviest responsibility I have had this week was the need to make a phonecall to the water company because I noticed the Direct Debit to them didn't leave our account at the beginning of the month. So why the heck should I be feeling like this?

I've written before about the perils of having a strong internal locus of control when events are, in reality, somewhat outside one's control. However, I do wonder whether this is also wishful thinking on the part of my subconscious; perhaps deep down I wish the things I do - which always require significant effort because of what I'm up against - actually mattered. Which they don't. Whilst I know I have value in all sorts of ways, I am the least important person I know. And of course, right now, I'm doing very little of any significance whatsoever.

No, I'm not sure that's it; I am feeling rather stressed out and muddled by my Things To Do List, the number of unanswered e-mails, etc.. Rather as I might if I was trying to save the world, I really wish I could turn off time for a few days to get myself together.

In any case, I'm boring you with this stuff in the knowledge that the mere act of putting it down often exorcises the demon. I shall come out from up my own arse shortly.

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Monday, September 03, 2007

Just like any other illness.

This is something I've been meaning to write about for a while and loosely fits in with Pity Protest Blogswarm in so far as it is about the Charity Model of Disability and its failings.

I wrote a little piece on the Ouch! Blog today about Awareness Campaigns and their limitations. One example where such information campaigns are particularly unsuccessful is in the area of mental health. A month or so ago, they announced a new one, a £16m drive to tackle the stigma of mental ill health. I read the very first sentence of the article about this funding
"In the biggest attempt yet to change the public perception of conditions such as depression and schizophrenia, three major charities are to run a TV campaign showing that many conditions thought of as incurable are treatable."
and my heart sank. These anti-stigma campaigns keep failing because they try to work around perceptions of disability that exist in this culture instead of challenging them head-on. Instead of arguing that impairment is a morally neutral aspect of the human condition, that medical facts belong to the individual and the medical staff working with them, and that society needs to work on accepting and respecting all of its members regardless of their health, they cry "Look! We can squeeze ourselves into this mold as well!"

And it fails. Why? Because no chronic illness sits comfortably with the dominant models of disability and mental illness sits least comfortably of all. The problem?

Sympathy.

When the respect and acceptance of a society is not on offer, sympathy is the only thing disabled people can hope for. And sympathy makes demands; the recipient must prove themselves innocent in their peril and worthy of our pity.

For a long time, mental ill health has come up against two obstacles in this regard. The first is the perception that much mental ill health is merely an absence of moral fibre; these people fail to cope, they are weak and cowardly and thus not innocent or worthy victims. The second is the perception that the other group of people with mental ill health are so very much out of control that they are a threat. We struggle to sympathise with something we fear.

Anti-stigma campaigns have generally approached this problem by proposing a biogenetic or shit happens model of mental ill health. People just get sick, it's biological, genetic, it's just one of those things. A person is walking down the street one day and kerplunk, they develop major depression. It is, they say, just like any other illness.

This hasn't been entirely ineffective with the label of Bipolar Disorder or Manic Depression, as we have established that there is a significant genetic component at workd. At the same time, Manic Depression has long been associated with the stereotype of artistic genius, which also helps ( not that people with BD/MD don't still face enormous stigma, nor are such stereotypes without their own problems).

Unfortunately, there are very many mental health conditions which we know have been triggered by life events such as stress and trauma and many more where life events are likely to have played a major role (if that can't be said for all mental illness). And that's much more difficult as far as this issue of sympathy is concerned because you failed to cope when someone else might have coped.

In reality, this is nonsense. There are always reasons why people get sick, but these reasons are always complicated and often elusive. A person's neurological and psychological response to trauma is no less complex than an immunological response to a viral infection - perhaps more so. There is never one simple answer as to why an event effects a person in the way it does, that stuff happens far below a conscious level and nobody ever chooses to get sick, nor do they choose not to get better. In all these regards, it is just like any other illness, but not because it is in any way simple.

At the same time, anti-stigma campaigns attempt to deal with the second problem, the fear of "psychos", by pushing forward the idea, as alluded to in the quote above, that these problems are treatable. In reality, the people who suffer the most from the stigma of mental ill health are those with chronic and severe conditions which can be managed but are basically incurable. And whilst psychiatric medicine has progressed a great deal in recent years, some treatments still present users with very difficult decisions; decisions made more difficult by the prevailing idea that if it is treatable it should be treated.

However, the central mistake made by anti-stigma campaigns is the idea that any of the facts of mental ill health are relevant. At least none of this ought to be relevant to society's response to a person with mental ill health or any other impairment. Impairment is a morally neutral fact, like sex or skin-colour; it just is. People do not need to meet any kind of criteria in order to qualify for our sympathy; everybody qualifies for our respect by virtue of having blood in their veins. Whereas if you have custard in your veins, I won't give you the time of day.

Being the longest blog post I've written in several weeks, I've no idea if any of this makes sense.

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