The Goldfish Guide to Dealing With Doubters #1

I've been meaning to write this one since before Christmas when a couple of bloggers got me thinking about illness and doubt. It's going to wind up a couple of posts, but I'll try put something frivolous in between. Anyway...

First, Never that Easy had been asked to diarise her pain levels and had a conflicted response to seeing it all mapped up.

“I want to print it out and stick it on the refrigerator, or e-mail it to everyone I know or ever met and be like: "See?!? This is what it's like to be me: This is what I'm dealing with. Look at all those 5s and 4s!!! Now ask me again why I'm not working but instead 'sucking up your social security'!" At the same time, I want to hide it... I'm a little bit ashamed of it, that it's gotten this bad. I want to ignore it, to not have to face it.”

Meanwhile, Seahorse has been dealing with a sister.

"But no, apparently I'm not disabled because I walked in town last weekend. This 'miracle' proves that I am not disabled. Forget the fact that I was in bed for several days after, and went straight into a wisdom tooth infection.

Oh, and my eyes burn too brightly these days, apparently."

Since then, Andrea has also touched on this in her excellent You just don't get it
Frida Writes has also written eloquently on this subject in the past, and both Gone Fishing and Cusp have long-running battles with insurance companies which involve this issue.

Lots of people have aspects of their lives which are subjected to the skepticism of others, but chronic illness is special because of the Tragedy Model of Disability. This is sometimes called the Charity Model and it is this aspect – the way in which disability is seen as a charitable status, which is most important here.

Despite the way that systems work in real life, the practical, medical and financial help sick people receive is still regarded by many as a sort of charity. Often even equality legislation is spoken about as if it is out of compassion that employers and service providers should accommodate us. Charity is act of generosity and kindness, whereas social justice is about the duties we have toward one another. Charity, unlike insurance, requires recipients to be deserving as opposed to merely entitled - and there is an enormous difference.

This model enforces a power dynamic between non-disabled and disabled people, particularly those of us who are need lots of practical, medical and financial help. This makes it socially acceptable for non-disabled people to speculate about our varying degrees of "legitimacy". There is nothing worse than an undeserving charity recipient, and they must be rooted out.

People with chronic physical or mental illness perhaps bear the brunt of this because our stories are untidy. We have symptoms which are invisible, which fluctuate and which seem to be on a spectrum with normal experience (fatigue is extreme tiredness, depression is extreme sadness etc.). If ever challenged, it is impossible to prove our degree of impairment - there are no blood tests or scans which demonstrate how much something hurts, how difficult it is to concentrate and so on.

All this makes doubt very hurtful and threatening. To the extent I may be said to have achieved it, it has taken an awful long time to stop feeling guilty about the cost of my existence to everyone else, to stop feeling a need to justify myself, to demonstrate that I've done everything I can to get better and I do everything I can to spend my time productively.

Thus the first problem in dealing with doubters;


Self-doubt.

The first rule of dealing with doubters is to realise that your experience is legitimate.

Most people with chronic illness will, at some point, have doubted themselves. Denial is a standard stage of grief, so having phases in which we doubt our own perceptions of illness is entirely natural – if rather uncomfortable. The last time I had this was only last year, when my pain got worse. It was so bad, it was actually difficult to believe what was happening, even though it was intruding into my consciousness twenty-four hours a day. Even now, I wonder whether I can be remembering right, but then my pills are very good.

So doubt makes some psychological sense, but not logical sense. It is possible to have erroneous beliefs about an illness (what it is, what its caused by etc.), but that doesn't make your illness illegitimate. A symptom is a symptom. A symptom may be entirely imaginary, but it is still real to the person experiencing it – and considering that possibility won't make it go away (or it might, but if it did, you wouldn't have the problem any more).

Self-doubt can be dangerous as well as demoralising. It can delay us getting the medical help they need once scary symptoms kick in. But I guess people with chronic illness probably have to go through it, and revisit it from time to time. People who never doubt their own perception of reality tend to end up starting religions, invading small countries or dedicating their lives to provide goats with glamorous eveningwear.

Our sense of legitimacy is more than whether or not we trust our experiences. Because of prominent models of disability, we often inherit odd ideas about whether our experiences count enough to ask for help or reasonable adjustment.

For example, lots of chronically ill people refuse to identify as disabled, even though chronic illness is responsible for some of the most severe functional impairment and attracts some of the worst disabling treatment (especially mental illness). People often don't claim benefits and services they are entitled to, because they don't see their needs as great enough. Lots of people who have very poor or painful walking wind up stuck at home rather than using wheelchairs, not always through shame, but rather a sense that wheelchairs are for people who can't move their legs.

When we do accept what we're entitled to, we've often had to justify this to ourselves and thus almost expect to have to justify it to other people. But the worst thing we can do is to fall into the trap of thinking we have something to prove. Dealing with doubters is about dealing with other people's problems in order to make both our lives easier.

Sex, Human Nature and Morality.

It's Valentine's Day and this week saw the 200th anniversary of Darwin's birth, so I thought I would write a post with some rude words in it (and way too many parentheses).

Unreasoning folk who don't have a religious text to refer to, often use nature as the measure of all things that are good and proper. All manner of human behaviours are condemned as being unnatural, but most especially sexual ones. For example, I was brought up with the idea that only sexual partnerships are between a man and a woman are okay because only this particular combination of naughty bits can possibly produce a baby and that's what sex and love are basically about. Men and women must play very particular roles because nature has endowed them with difference.

Nature has equipped us with many things but no code by which to live. It does not provide any purpose in life nor does it dictate our social priorities. Evolution doesn't mean we were put here to reproduce – there is no consciousness behind our being here at all. The instincts we have do not, in themselves, justify any behaviour. We are plenty smart enough to work out what is right and wrong without pretending it has anything to do with our genetic heritage.

People who get very upset about other people's sex lives are generally quite insecure with themselves, but you can see how our culture has lead them to this place. Generations were taught that sex was a sin, that even thinking about sex was worthy of the red-hot-poker treatment and yet most people must have done it or else none of us would be here. So in order to feel okay about our own desires and dirty doings, we imagine degrees of sinfulness.

Perhaps I'm okay because I only perform unspeakable acts within marriage – people who perform the same unspeakable acts without the certificate must burn for all eternity. If not that, then people who get hot and sticky with the wrong sort of people – or more than one person - in the wrong place or wearing inaccurate historical costume (a bona fide Highwayman wears a frock coat not a tailcoat). The Victorian moralists were particularly good at this, condemning everyone and everything but themselves and their own peccadillos (which is like an armadillo but kinkier).

And yeah, I know it is a bit daft to talk of nature and marriage, but people do. It is the only objection to same-sex marriage from the non-religious. People imagine that a life-long state-certified sexual union between a man and a woman who have children together is the most natural state of things and therefore superior to every other kind of relationship. Of course, what is considered natural has skidded all over the place throughout our history. So, a little about our prehistory...

Our closest living genetic relatives are the Common Chimpanzee and the Bonobo Chimpanzee. Both of these, but particularly the Bonobos, are promiscuous. Bonobos are sex-mad! Sex is recreation, bonding, celebration and conflict-resolution. The gentleman-chimps frot and they all do all manner of filthy things which have absolutely nothing to do with reproduction.

We are not Bonobos; sex tends to matter quite a bit more to us. We only want to have sex with people we're attracted to and most of us are picky. We do however share some of this heritage. We are physically equipped to enjoy sex immensely and our reproductive setup is such that most of the sex we have is not reproductive. A human female is vaguely fertile for less than two weeks out of a month, only very fertile for a few days in a month - and then only for about half her adult life - whereas her desire for sex, and others' desire to have sex with her is continuous (whether people are less attractive as they age is beside the point – older people do have sex, many creatures out of season get none at all).

So even the baby-making business cannot be said to be entirely about baby-making, let alone all the other revolting practices that come to mind when presented with all the bits and pieces we have available to us. Human beings do use sex for purposes other than pleasure and bonding – demonstrated most disturbingly in the sexual violence that occurs in power struggles both domestic and international. Power is often in the mix even without coercion. And whilst most humans are attracted to members of the opposite sex, in a same-sex environments (boarding school, prisons and the military) well, any two people have the capacity to assist one another and they frequently do. *

And we have promiscuous minds. I imagine if you were a swan or some animal that mated for life, there would be some sort of mental block when it came to eying up swans who were not your mate. Rather as most human beings have complete blocks when it comes to the family members we grew up with; we can't see any of them as sexual beings and find it rather gruesome to be reminded that they are. But otherwise, however attractive you may find one person, there are always other people who are also attractive.

Yet we have big brains and since ladies stood up (in our high-heeled shoes) we find ourselves with a relatively narrow pelvis through which to give birth. Babies are born very small and helpless and remain extremely vulnerable for a period of years. At this point in our evolutionary history, it became highly beneficial for sexual partners to bond with one another on a long-term basis so that there were two caregivers and the offspring might better survive its early years.

Meanwhile, good reproductive strategies – getting the best genes to combine with your own whilst still ensuring that offspring are brought up and cared for – began to involve deception. This occurs in many organisms, and it means we can be both very crafty and immensely jealous. It is in our gene's best interests for us to deceive but not be deceived (not that our genes have interests exactly, but you get my point).

So it is natural to want to have sex with different people, it is also natural to bond with one partner for a period of years. It is natural to deceive our partners, and to be jealous. We haven't lost any of this - if we had, then these behaviours would not have remained commonplace.

But then language and love came along of course, which complicates things further. It means that some people really can mate for life and be very happy together. And this is where homosexuality shows up. Like I say, we've all got plenty of bits and pieces to play with, so homosexuality doesn't matter a great deal until you start falling in love with people. I imagine that most exclusively gay people have had heterosexual sex at some point. But with love, we can't be so flexible. Nor should we be.

There are lots of theories about a biological cause for homosexuality, including genetics - it probably is a genetic mutation, whether entirely spontaneous or to do with the womb environment. Some people are really desperate for a reason, preferably an evolutionary reason, a purpose, a justification. But it really doesn't matter. Homosexuality involves a fairly subtle deviation in the midst of our complex make-up, a single crossed-wire and its effects are completely and utterly benign. And in terms of our ungrateful culture, it has been extremely useful; gay and bisexual people are over-represented among the great men and women of our history because it is always the oddballs, often those without family responsibilities, who do all the interesting stuff. I've said it before, but just as mutation is necessary for biological evolution, it is the mutants carry society forward. Whether or not they reproduce.

So anyway, this is how we are. Various and conflicted. And very much complicated by other people. Our variations seem significant only because we're not Bonobos and the prospect of sexual behaviour which don't happen to turn us on often seems disgusting. A lot of kinky stuff that people get up to would make my stomach turn, but the stomach isn't any kind of moral compass or else cake would be one of the seven cardinal virtues.

A lot of misery is caused by a failure to recognise this mix, by magic ideas around sex and love. If I believed that being in love would blind me to all others, then my first new crush would seem like falling out of love. If I believed that true love lasted forever by default, I might not be such a good lover (I mean good as in decent and faithful). And if I believed that one set of my entirely natural feelings were virtuous and another sinful, I would loath myself – which of course, I did.

What matters in life is what we do, not what we feel. None of us are compelled by our instincts, we must reason with ourselves. But I guess there are really only three things that matter in all sexual relationships:

1. That we don't harm others. This includes not taking advantage of people who are vulnerable or much less powerful than ourselves – obviously leaving children and disinterested parties alone, but also being wary of more subtle forms of exploitation.
2. That we are honest. Being honest with one another doesn't avoid hurting feelings but it helps a great deal. This includes making our promises very carefully and sticking to them.
3. That we take responsibility for our reproductive potential. We should avoid making babies which we don't want or can't provide for. When we do have babies, we must give them the best possible chances.

We make our own codes to fit our own choices, lovers write their own rules together. But little else is of universal importance.


* I made this point to my mother during a very round and about conversation in which I first told her explicitly that I was bisexual. Anyway, it had all started with Boudica (I don't think she was queer, the conversation took an unplanned route) and I made this point about pragmatic sexuality, that ultimately any two people could get one another off, which in itself was a shocking thing to have said in front of my mother and she was silent for a while.

Then she said "You mean, like Edwina Curry and John Major?"

I thought about this for a moment. "I suppose."

"Well," she said, "I think there ought to be a law against it!"

The problem with single-mothers.

Yeah well, I'm trying to rehabilitate myself back into blogging. Got to start somewhere.

Every couple of months or so, there is some new report about how terrible childhood is today and and how it is all the fault of single mothers.

The latest one was a in report last week entitled the Good Childhood Inquiry conducted by the Children's Society, who are closely allied to the Church of England. This was misrepresented in the press as a doom and gloom report advocating traditional family values. It's actually not nearly so bad, they looked a wide range of issues and made a great number of recommendations to government, but it did produce the following statistic which was repeated in every news story about it

Children, whose parents separate are 50% more likely to fail at school, suffer behavioural difficulties, anxiety or depression.

Although this wasn't said in the report, this statistic was used elsewhere, as statistics like it always are, to argue that.

1. A masculine parent is so important that without one living in the same house, a child is doomed.
2. The marriage of one's parents is vital for a happy and healthy childhood or
3. We should readopt traditional family values – whatever the heck they are - for the good of the nation's children.

It goes without saying that few people choose single parenthood – although it is a risk that everyone takes when they become a parent. Raising children is hard work and expensive, so two people are better than one (three would be better than two, come to mention it). Meanwhile, most single-parents didn't plan on being so. Most of them started parenthood in a long-term relationship, and most of the small number who did not probably didn't plan to be parents at all.

So it is not ideal, but it happens and always has. And the reasons that it is a problem in our society at this moment in time are not to do with the morality of divorce, premarital sex or anything like that. This is mostly to do with poverty.

Most single-parents are women. Not all, but most, and this is important. Apart from anything else it enables various stereotypes about women using their magical eyelash-fluttering child-bearing ability to exploit either the state or men for financial gain. The fact that for every single mother there is a father who took part in the baby-making activity (I believe that letters to the stork still require a joint signature) is generally neglected.

For not-unrelated cultural reasons, women earn on average just three quarters what men do. So your Mum and Dad couple working the same hours will be typically two and a third times better off than Mum as the sole provider. Out of which must come full rent, utilities and so on.

Single mothers are at a particular disadvantage among female workers. The demands of childcare mean that they are more likely to be working part-time or low paid flexible work, and they are going to be considered unreliable by potential employees. For many single-mothers of young children, it is not worth working – not because state benefits keep these families in the lap of luxury, but because childcare provision and working conditions in the UK are not oriented towards family life.

Fathers can provide, but the absent father's life is not a particularly cheap. Unless Dad is a high-earner, he is unlikely to be able to afford to contribute much towards two lots of rents or mortgages, utilities and so on. As a weekend-parent, Dad is likely to feel under particular pressure to provide treats and entertainment, which are also costly - his pot is unlikely to be overflowing. Plus, according to the Children's Society report 28% of children had no contact with their father three years after their parents' separation. Some men do struggle for access, family law is often applied in a sexist way in favour of mothers, but no contact at all is abandonment.

If there is money, everything is different. But poverty is a major factor in initial family breakdown, so poorer people are more likely to be in these circumstances to begin with.

Anyway, your average single-parent is a woman who is financially hard up. This dictates a hell of a lot about her life and the lives of her children.

Money dictates where she can live. If she is on benefits or mode average wages, she is likely to live in cheap rented accommodation or social housing. Such housing clusters poorer people together. Social housing, as it is, has a whole heap of social and pscyhological issues for the tenants – something Margaret Thatcher realised, but attempted to resolve by selling most of it off. This means that social housing is more stigmatised and isolated than ever. Some of it is very good, but some families find themselves forced by circumstances into run-down estates or tower blocks which are bad environments for all sorts of obvious reasons to do with safe places to play, vulnerability to crime and criminal influence and adult role models. A mother who doesn't work is not necessarily a bad example, but if all one's adult friends and neighbours don't work either, that's a problem.

Money dictates what a mother can do. We had a patch when we were kids – the last recession – where my family were broke, Dad was out of work and the house was on the verge of repossession. When I got ten pound note for Christmas, I swapped it for the fiver in my mother's purse. We had no car, the buses were expensive, but we all had second-hand bikes. So we used to cycle all over the town and its outskirts, to free museums, the library, parks, to visit family member and so on. If we didn't have somewhere safe to keep our bikes, or even if the roads in the town were as busy as they are now, our world would have been much much smaller.

There are a lot of things you can do for free, but even where we lived in Ipswich, the library was a good three-quarters of an hour's walk away. The museum would have been a day's hike (although it did have a giraffe so it was worth it). But then when Dad got a job and we eventually had a car, we could go to castles, the seaside, to forests and nature reserves – not expensive outings, we always took our own food, but the ability to move about really matters to one's quality of life.

Money dictates what kinds of relationships she can have. Parenthood complicates romantic relationships as it is, but poverty complicates it even more. Women's increasing financial independence has had huge implications in terms of equality and physical safety within live-in relationships. When women have the economic power to leave and live comfortably alone, they are generally treated better – not beaten up so often, not expected to play a deferential role and so on.

A single-parent on income-related benefits loses a massive chunk of her money as soon as a chap moves in. She and her children then become dependent on his income, overnight. He cannot merely contribute towards the rent; he must either pay it all or not live there at all. And this power-dynamic makes women and their children vulnerable to various shades of exploitation. The more sensible solution to is to keep the relationship casual or smuggle the chap in after dark each night. This can be extremely uncomfortable for two people in love who want to make a life together, to say nothing of the children. Like I say, things were complicated enough.

So single-mothers in poverty are more likely to have messy relationships if they have any romantic relationships at all – and I'm sure it is good for one's parents to have romantic relationships, just like other grown-ups. Money makes all the difference. If a single-mother has a good independent income, romance can progress at a natural pace. In poverty, she must either recognise the disincentives to committed relationships or leave herself vulnerable to exploitation.

The disadvantages experienced by children in single-parent households have nothing to do with any traditional family structure having been an ideal. We have always had odd-shaped families, relationships have always broken down and people have always died prematurely, but for most of human history, we have not placed the entire responsibility for a child's upbringing on two biological parents. We have also accepted that looking after the wee buggers is a valuable contribution to the group as a whole. Reproduction is by no means an altruistic act, but we have made it very much more selfish than it ought to be.

We need to improve education so that both men and women take their reproductive responsibilities very seriously from the start. We need to make sure that already poor young women have more appealing options than having babies straight out of school – not to reignite the hypocritical stigma of the unmarried mother. Gender equality makes relationships happier and longer lasting and makes things far more manageable when they don't work out.

But we also need more flexible working conditions for men and women, better public transport and a more imaginative wellfare state (not necessarily a more generous one) – disabled adults could use all this too, by the way, we all do, but the kids are kind of important.

January

Turns out, I wasn't on the mend. I may be now. Maybe.

Here is my lament on the month of January, which is the peak of my literary achievement this month.

Oh January! January!
Thou art a month of poo!
Oh how I yearn for February
When January is through!
You always start with such high hopes
Never to fulfill!
And I am left here, rather dopey
In agony and ill!

Laments have to have lots of exclamation remarks in them! Fortunately, my pain meds are still working very well, so agony is one thing I've had thankfully little of, except on that one day I forgot a pill. Modified Release means that you don't hurt at the point you're supposed to take them, not until a few hours later, at which point, when you take the tablet, it'll take another few hours before they'll begin to kick in.

Fingers crossed I shall be writing something interesting soon (it's about the third time I've said that, I realise), but no promises.

Tell me now how do I feel

Well that was some cold. It wasn't the flu or anything like that, but it didn't half drag its heels. I'm still coughing a bit, but did manage to leave the house for the first time since Christmas yesterday and am generally coming back to life. I should post something worth reading at some point this week, I'm sure.

Today is supposed to be the most depressing day of the year, whatever that means, and thus I guess this song is in everybody's head by now.

Recovery in Progress

So I was taking a while to get over Christmas and then I got a cold. The worst has passed but I'm still knackered and thought I should explain my silence in case anyone thought I had been gone up with a New Years firework.

Also, can I just point out that a cold spell brought about by an Arctic wind does not make for Arctic temperatures, as we are widely reported to be experiencing? It has to be said. It may be parky out, but it's about 4 degrees C here just now. It's currently -43 C at the North Pole.

Happy New Year!

I think 2008 has been characterised by Unexpected Developments. A few of these have been negative, but most not and more importantly, the positive ones have set things up for a very interesting 2009. Oh this is is just rubbish, but I'm really tired now and I can't possibly say what I want to say. Basically, 2009 promises to be one of the more interesting years of my life so far, if it goes according to plan. If it doesn't, well that's going to be interesting as well. But I am looking forward to seeing how things pan out.

It was a very good Christmas. Alexander liked his snake puzzle, although asked what kind of creature it depicted, he said, “Ssss – ssss – ssss – worm!” He has however learnt both our names and has over double the vocabulary he had in August.

But I am shattered, so after the vaguest and briefest of annual reviews you are likely to encounter, thanks for all your presence, comments and suppport during the last year and a very happy new year to you all!