Thursday, December 24, 2009

Merry Christmas!

A robin in my gardenMerry Christmas everyone - or anyone!

I will be back blogging on something like a regular basis soon, I promise. Just now I am still frantically trying to sew together a Christmas present in time for tomorrow!

Friday, November 20, 2009

Trans Women & Feminism - International Trans Day of Remembrance

Special thanks to Queen Emily who helped me out with some aspects of this post, even though I'm not sure how well I'm currently able to use what I learned from her.

Today is International Trans Day of Remembrance, a day which remembers the horrific number of transgender people who have been murdered because of who they happen to be. Many more transgender people suffer discrimination, harassment and abuse. Transgender people experience the full brunt of homophobia, misogyny and disablist hate and seem to be far more vulnerable to violence than any other global minority.

I'm not sure there can be an adequate response to the roll call of murdered men and women, but for a long time, for various reasons, I have wanted to write about trans women and feminism. Given where my head is and has been lately, I realise I'm not going to do this subject anything close to justice today, but I thought I should give it a go.

Trans women aren't being murdered by cis (non-transgender) feminists, but some mainstream feminists have attempted to wash their hands of trans women, who are among the most vulnerable of our number. By leaving them out, feminism is in danger of losing their contribution as well as failing to support and protect our sisters. Much as I worship the ground she walks on, Germaine Greer is pretty appalling on this subject. She's not the only one, but as by far the highest-profile feminist in the UK, this is big problem. Only this summer, on the fuss about whether runner Caster Semenya was too fast to be a woman, she wrote the following:
Nowadays we are all likely to meet people who think they are women, have women's names, and feminine clothes and lots of eyeshadow, who seem to us to be some kind of ghastly parody, though it isn't polite to say so. We pretend that all the people passing for female really are. Other delusions may be challenged, but not a man's delusion that he is female.
This is not part of a debate about what sex and gender are – important stuff for feminism. This is just nasty. And all the feminist writings I have ever read which question the authenticity of trans women's feminine gender, also question the legitimacy of trans women's voices and wind up calling them names. These people are disgusting. These people are crazy or just plain funny. In The Whole Woman, Greer, peace be upon her, has a chapter on the subject is entitled Pantomime Dames. Ouch.

So why do some cis feminist insist that trans women are not women? And why does it matter to them so much, when however you understand a person's identity, the problems of transgender people are all about our cultural ideas about gender and sexual inequality?

In my youth, before I'd thought about it for more than two minutes, I imagined the whole concept of transgender was based on a sexist gender binary – the idea that anatomy was destiny and the only way to change your destiny was to change your anatomy (imagining all transgender people did just that, which they don't). Naively, I couldn't imagine anyone else's body could be more ill-fitting as mine seemed to be! I'd also agree with Greer's and other's assertion that a woman is something more than a man without a cock (if that's what anyone was suggesting, which they're not). But if this "something more" is physical, hormonal or genetic, then we're back to only a slight variation on anatomy is destiny.

I'm not at all well read on trans matters, but disability helps me sort this out a little. The only thing disabled people have in common is a social experience. Some of us have other problems, do to do with our bodies or minds. Some of us have conditions which aren't problematic to us but invite differential treatment from others. Some disabled people have no functional difference, but perhaps have a diagnosis which attracts stigma even when there are no symptoms of ill health. Whether a person is disabled or not is not a medical matter, but all about the way society reacts to some physical, mental, sensory or intellectual difference a person has.

This, the social model, ends arguments about who is and is not disabled. When disability is something medical, then there is doubt. What diagnoses count? What if there is no diagnosis? How severely ill or injured must a person be? But that's just daft. And it promotes hierarchies and people – often the most marginalised disabled people - being left out in the cold.

So to woman. As with disability, medical markers are dubious and problematic - sex is a muddle. The only thing feminism should be concerned with is the nature of a person's experience of gender in a sexist society. Do trans women suffer the kind of sexual discrimination familiar to other women? Are trans women, like other women, looked down upon because of their physical, social or sexual deviation from our culture's feminine ideals? Are trans women vulnerable to sexual violence or murder at the hands of men who hate women? Are trans women accused of not being proper women because of social, sexual, reproductive and political choices they make, or because of superficial things about themselves - sexuality, disability, physical apperance - they can't help?

Trans women perhaps have an even greater stake in sexual equality than most cis women, because they typically suffer more than most of us. If there were degrees of womanliness based on negative social experience, trans women would be uberfrauen!

Some cis feminists argue that women are an oppressed group, and nobody can choose to belong to an oppressed group, ergo trans women who started off with (at least some) access to masculine privilege, cannot choose to become women. But of course, this argument merely demonstrates the absence of choice in these matters.

Then there is the argument that women are created by social experience, but trans women didn't get the negative conditioning cis women experienced as children and are therefore not real women. Queen Emily put it very nicely by explaining that it's not a matter of whether or not she had a girlhood, but what kind of girlhood she had. Little boys and little girls might be given slightly different experiences, but we all receive the same gender programming - boys are this, girls are that. If you are a little girl, even if you have a winkle and people treat you like a boy, you still get the message. Even if someone cast a magic spell on any one of us and we woke up as a different gender, we'd have a pretty good idea of what would be expected of us.

I think I can best relate to this when it comes to my bisexuality. I didn't finally work out that this is what I was until my twenties, but I was queer ever since I first fell in love with a girl, aged eleven. Without pointing the finger at me, people around me and society at large made it very clear how they felt about people who deviated from the heterosexual norm and I knew, whatever my exact complaint might be, I deviated. Stephen Fry writes very well about this in Moab is my Washpot, where even at a boarding school where everyone was at it like... rabbits in the absence of lady rabbits, Fry still knew that he was queer and queer was a problem.

If someone comes out of the closet at forty, we don't say, "Sorry mate, but if nobody called you a pouf at school, you just don't count."

And even with disability, getting to fifteen as a non-disabled person didn't mean that I was free from the cultural baggage of disability - on the contrary. There's nothing magic about gender. The only major difference between the childhood of trans and most cis women - apart from possibly the agonies of having long hair combed threw after you had a fight with a gorse bush - is the anatomical stuff. The whole point of feminism (and egalitarian movements in general) is to stop judging one another according to superficial nonsense like what someone has or has once had in their knickers.

Finally, since I do seem to have made this as much about disability as about gender (sorry, head all over the place), a word about gender reassignment treatment. What treatments a transgender person may have and whether these treatments are effective at alleviating mental distress have nothing to do with the authenticity of a person's experience and their value as a human being. The medical side of the transgender experience is nobody's business but individual's and their healthcare worker's.

As long as trans people are treated as badly as they are in wider society, these treatments will remain controversial; many transgender people experience depression, anxiety and remain vulnerable to suicide even after treatment. But this is not surprising. In order to get gender reassignent surgery on the NHS, you need to have a mental illness - not just be trans, but experience clinically significant levels of distress. Depression and anxiety which has built up over a period of years is not instantly cured the minute you take away the source of distress and in the case of these treatments, only one source of distress is being removed (and then rather slowly). Getting treatment doesn't make one immune from discrimination, from relationship problems and social isolation. Even in the UK, trans people are sometimes forced to pay for treatment, which adds massive debt to that mix.

But crucially, even if gender reassignment surgery was a long-winded and intrusive form of homeopathy, it ought not make any different to the way that trans people are treated by the rest of us. No person should be defined by their medical history.

There are far superior and more appropriate posts up about the Day of Remembrance at Questioning Transphobia and the FWD/ Forward blog.

Thursday, October 01, 2009

Unfit for Office

This week, there have been rumblings about whether Prime Minister Gordon Brown is taking anti-depressants. Now, I have absolutely no respect for Gordon Brown as a politician - actually, I don't have much respect for Gordon Brown as a person. But it really pisses me off when people use relatively minor health matters to suggest that someone is unfit for office.

So what medical conditions would actually make a difference to someone's ability to lead?


If Gordon Brown is on anti-depressants, that doesn't point to “psychological flaws” or unfitness. Lots of people take anti-depressants long-term and a huge proportion of us have taken anti-depressants at some point in our lives whilst remaining completely competent in our work. Our most famous (and some say greatest) Prime Minister, Winston Churchill famously experienced "the black dog" of episodic depression, and is often held up as a great stoic.

Depression is not usually a serious long-term mental illness. For some people, it is incapacitating and can effect all aspects of life and relationships. For most people, it is a very unpleasant but relatively mild, short-term condition which need not have a negative impact on work. Someone who is on effective medication may well be free of symptoms.

It has been said that we can't have a Prime Minister with a less than pristine mental health (whatever that looks like) because he has access to the nuclear button. Yet most outrageous irrational acts – murders, rapes, war crimes etc. - are committed by people who have no diagnosable mental illness. We talk about the great tyrants being mad but the evidence for actual illness remains extremely patchy. I'd say it's pretty dangerous giving anyone access to the nuclear button.

Psychosis, when a person has experiences which aren't actually happening, can occur in anyone, triggered by physical illness (such as a virus or hormonal imbalance), a reaction to medication or poison, or an extremely stressful event such as bereavement. People who have had serious mental illnesses like Schizophrenia or Bipolar Disorder/ Manic Depression for many years will be much better equipped to deal with psychosis than someone who was previously healthy. Such people have ways of coping with hearing voices (and so on) without being compelled by them.

In other words, ruling out people with mental health problems from office is no way to protect ourselves against reckless behaviour on the part of our leaders. It would be as ridiculous as saying that only women should be given positions of authority because we would only expect men to behave aggressively, dress badly and create scandals by sleeping with their secretaries.

Autism Spectrum Disorders

The label of Asperger's Syndrome has attached to Gordon Brown more than once, usually the only evidence being that he lacks charisma and can't do a convincing smile. Last time I looked, neither of these feature on any diagnostic criteria. Last time I looked around me, I saw some fairly charismatic people with autism. Some people have suggested that Hitler had Asperger's Syndrome and whilst you may well criticise him for one or two things, you can't fault the guy on his charisma*.

Author Robert Harris wrote an article in 2006 entitled 'Autistic' brown loses the plot which contained the remarkable (by which I mean awful) disability-as-offensive-metaphor
The buttoned-up suit, the mouth slightly agape, the physical awkwardness, the alarming smile which seems to appear from nowhere as if a button marked “smile” has been pressed in his head, the nocturnal brooding on imaginary grievances encouraged by a group of chippy cronies — Brown, like Nixon, suffers from a kind of political Asperger’s syndrome. Intellectually brilliant, he sometimes seems socially barely functional: a little bit . . . odd.
He goes on to diagnoses him with autism and Obsessive Compulsive Disorder and uses nice words like insane and demented. All respect to Robert Harris as a novelist, but this is a nasty article. Could the same rhetoric be used if he had raised questions about the man's race, gender or even sexuality? As for "a little bit ...odd." Not exactly Ciceronian, is it?

As with Brown's supposed depression, his supposed Asperger's is seen as a pscyhological flaw. But there is absolutely no reason why someone on the Autistic Spectrum couldn't be Prime Minister, if they were so inclined and otherwise able to do so. Lots of people on the Autistic Spectrum would run a mile at the thought of public office, others would be incapable of standing. But otherwise, why not? It's not like people with Autism or Asperger's are unfeeling robots with human skins - it's not nearly so simple as "an inability to empathise" (see Lindsay's excellent recent post on this). Nor is a leader overburdened with feeling exactly what we need; Blair had an emotional response to every falling leaf and that didn't do us any good.

Cognitive Dysfunction

Friends, I'm so sorry. I can't be your World President because my brain is not up to the job. But nor is my brain up to running for office or performing any of the tasks which would be necessary in order for me to rise to become a serious candidate. If I could, then there'd be no real reason why I couldn't be a leader.

The big danger with cognitive dysfunction is when someone doesn't realise there's a problem. So for example, if someone has dyslexia, they know what they can and can't do and they're not going to make any mistakes because they think they can read better than they can. But if someone has Alzheimer's, there is the danger of forgetting so many things that they become very confused without even realising that they are confused. Which could be confusing.

Towards the end of his second term as Prime Minister, Churchill suffered a stroke which was completely covered up by government. It is said that between this point and the point at which he resigned, he really wasn't up to the job. But that only demonstrates the fact that non-disabled leaders can become disabled leaders. You can't screen out unhealthy candidates because health just isn't reliable.

Terminal/ Life-Endangering Illness and Old Age

Of course, it did all right for the fleet in Battlestar Gallactica. Clearly, if someone is about to die, they're not going to be up for any kind of work. But there is a ridiculous anxiety around leaders who might be ever so slightly more vulnerable to death whilst in office.

The joke (or was it an international nightmare?) around the time of the American elections was that John McCain's age meant he only needed to be standing too close to a balloon when it burst and Sarah Palin could be President. But presidents and primeministers do die in office and this is rarely a cause of political chaos – unless, of course, they were killed with violence.

Often politicians who are supposed to be old are not old in any sense we would apply to other people. We also greatly overestimate what old age is - we imagine that everyone over sixty is vulnerable to memory problems, confusion and physical ill health. Whilst this stuff does increase as we age, none of it is inevitable. Even in your eighties, you are most likely not to have dementia; physical impairments are far more common, but they are just physical. I have met very few people in their sixties or seventies who come across as too old for anything and where they do, this is an entirely psychological phenomena.

Physical Conditions

I have wracked my brains, but I can only think of a few physical issues which would have an impact on one's ability to be Prime Minister. If someone has a very weak immune system or if they have chronic pain which requires strong opiate painkillers, then foreign travel is going to be a problem. Inoculations may be dangerous, exotic disease even more so and some painkillers prescribed in the UK are very seriously prohibited elsewhere in the world. So, another two reasons why I can't be your World President. Never mind.

I'm sure that when more politicians with greater physical impairments do come up, a fuss will be made, but political leadership is simply not a physical role. It is a great annoyance the number of times that critics mention Brown's prosthetic eye and broken jaw. There are far more pertinent ways of criticising the man.


The old (entirely circular) argument against homosexual men in politics, military and the secret services was that homosexual men were particularly vulnerable to blackmail. If a high-ranking politician has a condition of which he or she is ashamed and seeks to cover up, this is a problem. And blackmail isn't the only issue.

Whether or not someone who is dishonest with the public about their health (or the state of their marriage, or any other private matter) is necessarily dishonest with the public about the things that matter, I don't know. But any kind of cover-up takes time and energy, could be a distraction and could lead to revelations which might compromise our leader and thus our country, if they come at a delicate political moment.

With some conditions, secrecy is par for the cause; a person might have an eating disorder or addiction for a long time before they are able to acknowledge the fact to themselves, let alone to other people. Once someone is in recovery, these conditions become much less of a problem. Someone who has had alcoholism, for example, may always identify themselves as an alcoholic, but so long as they are open about the fact and continue to avoid relapse, the condition is not nearly so dangerous. George W. Bush was not a dangerous man to have in the White House because he was a former alcoholic. He was a dangerous man because of his ideas.


It is difficult to say whether or not Roosevelt would have been allowed to be President Roosevelt had he been out of the disabled closet, but if that had been possible, disabled people in America and the world would probably be a long away along from where we are today. Politicians who cover up medical conditions and impairments today do a great injustice to members of the electorate with the same conditions and insult the intelligence and tolerance of the rest of us. Same with sexuality.

When David Blunkett said he was “not disabled”, he attempted to dissociate himself from all of us lowly cripples who aren't privileged enough to opt out of the label – people he was happy to talk complete bunkum about whilst in Minister for Work and Pensions. I don't think the American system of having candidates disclose medical records is necessary - by even doing this, there is the implication that the health of a candidate might have some significant impact on their ability to do the job. However, a politician who is evasive or in denial about a medical condition or their disability status is very unlikely to be a political friend to disabled people.

* I don't know why anyone thinks Hitler was an Aspie, but I can't see it myself.

Edit: I'm a little behind with blog-reading so only just read these two posts at Autist's Corner about the accusation that "Republicans are Autistic". It's not the first time entire political movements have been accused of having a mental health or neurodevelopmental condition, of course.

Thursday, August 27, 2009

This post is brought to you by the numbers 3 and 13

Like much of the blogosphere in August, things are a little quiet around here. My health has been up and down, and when I've not been ill, I've been using my energy to either work on the book or get out to enjoy the sunshine. I've got lots of things I want to blog about, but forgive me if that happens slowly. Thank you all for sticking around.

Yesterday was the thirteenth anniversary of my getting sick. I don't mind it too much, I certainly don't mind the anniversary. I just hope that, being a teenager, the Dreaded Lurgy doesn't now try to hook up with other chronic illnesses. I'd be very happy if it throws a tantrum and storms off, but this seems unlikely.

It was also the anniversary of going to see Star Wars: The Phantom Menace, my finally getting my essential GCSEs (nine years) and of my sister going into labour (three years). So Alexander is three today! I have made him a fire-fighter's uniform, as he is currently obsessed with putting out imaginary fires and rescuing people at the moment. I shall maybe add a picture to this post if someone takes one.

Have not deserted you. Will be back again soon.

Sunday, August 09, 2009

Disability and modern-day Nazism?

Last night, disabled activist Liz Crow sat in her wheelchair on the Fourth Plinth in Trafalgar Square dressed as a Nazi as part of the One and Another art project. It was a shocking image. Kind of like when Samuel L. Jackson dressed up as a Nazi in The Spirit (a terrible film, memorable only for putting a black man in a Nazi uniform). And then this morning, Nick Dupree shows us Donald Duck as a Nazi! But of course Liz Crow had far more dignity than either.

Liz Crow's brave and startling protest was to commemorate the victims of Aktion T4 and to draw attention to the relevance of those events for disabled people today. She says in the press release available here;
Today, the development of pre-natal screening and a rush to legal rights for newly disabled people to assisted suicide, show that disabled people’s right to life still needs to be defended. With a rise in hate crime, disabled children still excluded from mainstream schools, and over 340,000 disabled people (more than the population of Cardiff) living in institutions, disabled people still experience those historical values as a daily threat.”
Clair Lewis put it even more strongly;
"The values that the Nazis used to justify murdering quarter of million disabled people are just as strong today."

Now Nazism is over-rated. Nazism itself has become synonymous with total uncomplicated evil, the worst thing ever. It was, at the very least, a rather complicated evil and hardly the worst thing ever - very many times more people suffered and died in the Atlantic slave trade, for example, because of similarly nationalist and racist ideas.

These days the concept of Nazism is a touchstone of hyperbole. My favourite Nazi-related portmanteaus are econazi and feminazi. Environmentalism and feminism having exactly what in common with the far-right? Telling people to change their behaviour, apparently. The first Nazis took away people's freedom of speech, freedom of movement, the right to a private life and in many cases, life itself. These days, exactly the same kinds of people are making us feel ashamed for using plastic bags. Vee have ways of making your recycle und respect vimen!

But calling someone a Nazi is a good way of shutting them up. It's an insult, it turns people off and it silences debate. Nobody is going to engage with you in you compare them to the forces of tyranny and genocide. And clearly that's often way people are after. If nobody you disagree with engages with you, you can pretend that nobody (who isn't an evil Nazi) has any other arguments. I don't believe that of Liz Crow, Clair Lewis and other disabled activists for whom I have the utmost respect, and so I want to challenge their assertion.

The idea that modern disablism and the disablism of the Nazis are connected is not without merit. Personally, I've never heard anyone suggest that disabled people should be killed off but I do occasionally hear or read someone state that disabled people are an economic and social burden to everyone else, and it is imperative for current society and future populations that we abort foetuses which are likely to result in a disabled baby (even if the vast majority of disabled people could not be "screened-out"). But this isn't many people, certainly not most.

I have met, hear or read very many more people who think that disabled people are an economic and social burden but that, out of compassion, we should be looked after. They see reasonable accommodation as an act of charity, state benefits as alms. This causes no end of problems for us and it does leave us in a vulnerable position should the former rhetoric grow stronger. But is this comparable to Nazism?

I have written two lengthy posts on euthanasia if anyone wants to read my ultimately ambivalent views here and here. I'm not making an argument for one side or another here, just asking questions about some questions about the comparison, focusing on the most controversial issues of euthanasia and abortion.

Are the abortion of disabled foetuses and calls for the decriminalisation of assisted suicide driven by the same motives as the Nazi Aktion T4 programme?

As far as abortion is concerned, I'm afraid there is an echo. The individual decisions of pregnant women are always individual, but broader social attitudes are clear. Parents of disabled children (and disabled parents or non-disabled children) report the judgment of others that having their child was somehow irresponsible. Sarah Palin's choice to continue with her pregnancy when her unborn child screened positive for Down Syndrome has been presented both as an act of saintliness and profound selfishness - it was neither. I've written a lot about prevention here and here, but yeah, it's the same old. Don't subject your child to this half-life, don't burden society with this half-person.

But does that mean we shouldn't screen for impairments and we shouldn't allow women to have abortions on those grounds, just because the rhetoric stinks? Does the only way to make disabled people equal involve restricting women's reproductive freedoms? Would it not be better to focus on the creation of a world in which having a disabled child was not seen as a disaster?

Assisted-suicide is quite a different matter. Calls for decriminalisation are driven by ideas around compassion, the relief from tremendous suffering or simply freedom - the freedom for people with severe impairments to make the same self-destructive choices that the rest of us can.

Whether these ideas are misguided is up for debate. Point is, the non-disabled people most vocal about assisted suicide do not so much as imply that this is about disabled people being a burden to others. Tragically, some of the disabled people talking about assisted suicide consider themselves a burden, but that's not really how this argument is popularly made.

Are there similarities between legal assisted suicide as it might exist in the UK, the abortion of disabled foetuses and what the Nazis did to disabled people?

No. There's a very important word here and that's consent.

This was the biggest reason that T4 was ultimately abandoned. The Nazis didn't act with the consent of disabled people's families, let alone the disabled people themselves. There is a tremendous moral difference between an abortion which a woman consents to and a forced sterilisation. There is a similarly enormous difference between assisted suicide and murder. And whilst alas, many Germans could turn a blind eye when the Jewish family down the street disappeared, when it was their child, their parent or their sibling, it could not be born.

Being murdered, or having your reproductive choices violently removed are perhaps the greatest imaginable crimes against your person. Not that everything that may be consented to is necessarily okay, but at least there's some room for debate when there is consent.

And I think it is possible to increase the degree to which a person can give their consent. The more information a person has, the less pressure they are under, the more freedom they really have. Whatever the choice they have to make.

Could assisted-suicide be the first step on a slippery slope towards the persecution and genocide of disabled people?

Slippery slope arguments can be made about any change and are therefore best avoided.

In any case, it is very unlikely. I have plenty to say about the disablism that exists in the world today - as do others - but I still reckon that we're winning the battle. In general, things are better for disabled people in the UK now than they were five years ago, and even better than they were ten years ago. There are increasing reports of disability hate crime in the UK, but that may be because we've only very recently started talking about hate crime towards disabled people. Like any kind of crime against an oppressed group of people, reporting patterns and offending patterns may not completely coincide.

What is a real danger is unintended consequences. In the same way that women report feeling under increased pressure to abort a disabled foetus, there will be some severely ill people who will feel under pressure to opt out – or, perhaps even worse, some people with physical impairments and depression may find that their irrational suicidal thoughts are given some legitimacy by the society in which they live. This is a long way from genocide, but it would still be very very bad news.

The one thing I do feel really strongly about in all this is that there is no moral difference between the suicide of any two people who are not actually dying. The life of a young man who wants to die because he has a spinal injury is no less valuable than that of a young man who wants to die because he failed his exams or broke up with a beloved girlfriend.

But there may be ways of decriminalising assisted-suicide to prevent unnecessary suffering in death and preventing tragedy. If perhaps we think and talk about it for long enough?

Whatever happens, disabled people who consider themselves equal to non-disabled people need to be talking about this stuff and applying a little imagination. These are grey areas of morality; people have abortions or end their lives because they regard their chosen course as the lesser of two evils. I believe that we can and must decide which shade of grey is preferable for everyone, but seeing the matter in black and white missing the point entirely.

Wednesday, August 05, 2009

This is the Real World #2 Social Confidence

Last weekend, the Catholics Archbishop Vincent Nichols had a moan about social networking and how people were losing the skills to talk face to face. This reminded me that I had started writing about the benefits of on-line social interaction.

One of the great myths about using the Internet as a social tool is that too much time at a computer can make you more insular, turn you into the stereotype of the introverted geek with diminished social skills. As in the old joke about computer programmers;
How can you tell if a programmer is extroverted?
He's stares at your shoes when you're talking to him.
Some critics of social media are really very serious about this – the Archbish says that teenagers are killing themselves because of their transient on-line friendships (as opposed to fifteen years ago, when next to no-one had the Internet, and the UK suicide rate was markedly higher*). But they miss the absolutely essential point about on-line social interaction. This is part of the real world, not another world disconnected from this one. And I would argue that on-line social interaction can improve both our social confidence and our social skills.

Once again, chronic illness makes my experiences rather extreme, but not irrelevant.

If you spend a lot of time at home, your social muscle gets deconditioned. However much you might long for it, when you finally find yourself in the company of other people, especially new people, it can be extraordinarily hard work. The physical presence of new people can be over-stimulating. They look different, they smell different and you have a whole new repertoire of body-language, facial expression and tone of voice to get used to – and respond to appropriately. Other people take an enormous amount of energy before you even start trying to talk to them. Fortunately, they're mostly more than worth it.

The real problems arise when we pay attention to what we are doing. We're tired and we're slightly bamboozled. We're probably not smiling enough – or perhaps smiling too much and failing to drop our smile when we're being given sombre information (I'm afraid I do that a lot – if I'm still smiling after you've told me your cat has died, please give me an extra second to process the information before assuming I am glad). And we're almost certainly not saying the right thing. We're boring. We're tactless. We're standoffish or we're over-friendly. Frankly, we're such a complete and total idiot that we probably shouldn't be let out around other people at all!

My loss of confidence was probably the quickest and most crushing psychological effect of being ill. Other emotional consequences took a while to set in but I went from being genuinely out-going, stage-struck teenager to being uncomfortable around people other than my close family, within the space of about six weeks.

Now this wasn't just about isolation. In fairness, the cognitive effects of my illness were at their worst early on – I was a zombie, frankly. A zombie too nervous to get close enough to actually eat your brains. Disability can also have a profound effect on our self-image. We have to find brand new ways of realising that we are okay as people, that we have the same value we always did. We may have to adjust to a different kind of body. And we face particular challenges to our social confidence, like using a wheelchair or walking stick, which can be like wearing a flashing light or an invisibility cloak, depending on who's looking.

So there have been occasions when I'd said I was too ill to go out when actually, I was too scared. And that's a horrible situation. It was never that I didn't want to go - I would have been looking forward to it. But then it'd be time to get ready to go and I'd begin to get nervous, and eventually the nerves would rise to a panic. And for the strength of that panic, there might as well have been a pack of hungry velociraptors in the street outside. I was not going anywhere.

Of course this is deadly, because as with any phobia, avoidance only makes the next time even harder. At the point where you commit to go somewhere but chicken out at the last minute, that's a problem and only a few steps away from being an illness all of its own. Fortunately, such occasions were very rare for me, but some level of social anxiety is very common even for healthy people who leave the house more than once a fortnight. It is completely reasonable to want to come across as a decent kind of person. Even if you are happily non-conformist, you don't actually want to irritate or offend anyone, even the squares!

Anyway, these periods where my social confidence got so bad coincided were periods where either wasn't on-line, or not spending much time on-line. Spending time on my computer compensates a great deal for the isolation of illlness. It's no substitute, as I've said before. But it does seem to prevent my particular level of isolation from damaging my mental health. And if it can do that for me, I don't see why it can't benefit everyone who uses the Internet as a social tool.

Rather than turning us into loners, on-line contact is excellent practice for face-to-face. In particular, you lose the fear of strangers. I frequently “speak” to people I don't know very well, and I have learnt that I don't fluff up that badly. Occasionally, I am clumsy and wires get do get crossed –one would expect this to happen more often on-line than off – but it's almost always resolvable and if not, you learn it doesn't matter all that much. The world doesn't implode if one person thinks you're an idiot. At the same time, strangers are often extremely helpful, friendly and supportive. And some of them become your friends.

But even transient encounters are not unimportant. Comments like the Archbishop's about social networking undermining community life strike me as particularly ironic. Communities, unlike families and friends, are relatively large groups of people who don't know one another well but look out for one another despite the vagueness of their acquaintance. What undermines community life is the idea that you shouldn't trust or invest in people who you don't know intimately. This is why neighbours don't talk to one another – a reluctance to talk to strangers means that strangers is all they'll ever be.

You also get to learn and practice social skills in a safer environment on-line. It's safer because you can take your time to respond - even on IRC, you've got a chance to think twice before you speak. And perhaps best of all, on-line, it is possible to sit in a corner and listen without saying anything for periods of time without anyone fussing over you. Off-line, especially if you are a woman, you are expected to look cheerful and join in. And make the tea.

There are lots of forms of social isolation and alienation which can make people self-centred, not just not getting out much. But on-line, you can't just talk about yourself all the time, you are confronted by the complexities of other people's lives, reminded that your troubles are not extraordinary and your opinions not unique.

Of course, not on-line interaction is trouble-free. Social-networking and e-mail pose particular problems as tools for bullying and harassment. Not all interactive media is truly interactive, and there are places where people can express uncompromising opinions without paying any attention or respect to others and without getting any real feedback. Instinctively, I have my doubts about whether the BBC's Have Your Say pages or the newspapers who have a Comments thread under every story aren't in fact deeply unhealthy for their users. And fora where there is nothing but bickering and bullying are likely to be as damaging to one's social skills as a hostile work environment. But safe places do exist and they can be created.

* I'm not suggesting the Internet has brought down the suicide rate, just that there's no evidence that it's making things worse. I know what I'm about to say is a cheap shot but it's also a serious point (we are talking about the untimely deaths of young people, after all). They reckon about a third of teen suicides worldwide are related to sexuality - you know, perhaps some kid falls in love but some authority of other in their life, a church for example, says that love is an abomination. So if you were an Archbishop and you really did care about young people, as opposed to gaining publicity through your participation in a moral panic (one very popular with a news media which is struggling in the Internet age), then there might be more pressing matters to look at. Just saying.

Saturday, July 18, 2009

Being a Wally about QALYs

In which I take on another person far cleverer than I am! Of course, I don't really think that Peter Singer is a wally, but it rhymes so what can I do?

For a couple of months, I've toyed with writing a blog about how the NHS works for the benefit of American readers, who seem to be getting a lot of misinformation now that socialised healthcare has become a real prospect for them. I've seen lots of nonsense from American sources about how the NHS is rubbish and us Brits are unhappy with it. We're not! Sure, there are flaws in the NHS and we moan about it. But we also moan about the education system – nobody actually thinks that only kids whose parents can pay should go to school and the rest of them should be sent up chimneys.

This week's nonsense comes from an Australian. In a now vanished article in the New York Times (hat tip to Wheelie Catholic), Peter Singer explains the necessity for healthcare rationing.

As he says, all healthcare is rationed. The healthcare of my American friends is far more rationed than mine because the treatments they can receive is based on their personal resources. What treatment I receive is based on national resources. There's nothing scary about this “rationing”. The main result of this in the UK is an ongoing controversy about what should and should not be paid for. Under what circumstances should the NHS pay for cosmetic procedures, gender realignment, fertility treatment? Should people receive free treatment for the effects of their lifestyle choices?

Recently, as Singer describes, there has been controversy over some extremely expensive drugs for the treatment of cancer which the NHS – or more specifically NICE, the body that makes such decisions and recommendations – decided were not cost-effective. But it is rare that the controversies arrive from this direction. Usually we argue about the way the money is already being spent (basically, we gripe about the services which we personally won't use – I don't know why they spend money on testicular cancer when people bring it on themselves by carrying about such a ridiculous organ in the first place!).

So Peter Singer explains QALYs. Not terribly well. The QALY is a Quality Adjusted Life Year, which is to say, a unit with which to measure the outcome of a particular treatment. Singer gives the example of quadraplegia and speculates, quite reasonably, that most people might regard years without quadraplegia as being worth more than years with it:
One common method is to describe medical conditions to people — let’s say being a quadriplegic — and tell them that they can choose between 10 years in that condition or some smaller number of years without it. If most would prefer, say, 10 years as a quadriplegic to 4 years of nondisabled life, but would choose 6 years of nondisabled life over 10 with quadriplegia, but have difficulty deciding between 5 years of nondisabled life or 10 years with quadriplegia, then they are, in effect, assessing life with quadriplegia as half as good as nondisabled life.(These are hypothetical figures, chosen to keep the math simple, and not based on any actual surveys.) If that judgment represents a rough average across the population, we might conclude that restoring to nondisabled life two people who would otherwise be quadriplegics is equivalent in value to saving the life of one person, provided the life expectancies of all involved are similar.
This is a really poor example for reasons I'll come back to. First let me have a go with a more likely example:

Say there is a cancer drug called Vomitto 63. This drug gives the average cancer patient two more years of life, but causes them to vomit several times a day, every day. So a person has this extra time but their quality of life is significantly impaired. So if we adjust the time it would buy you according to the quality of that time, we might decide that the benefit of Vomitto 63 provided was worth just one year, one QALY. The government body, NICE, have an approximate monetary value on a QALY (up to £30,000) with which they compare cost of treatment. If a course of Vomitto 63 costs £40K, the drug won't be worth funding even if it extends life*.

This does not result in discrimination against disabled people.

The reason it doesn't, is because QALYs are only used in the abstract, when looking at whether a drug, a surgical procedure or whatever else should be funded for anyone. If you have quadraplegia, to use Singer's example, and you have a life-threatening heart condition, you will be given the same treatment as a non-disabled person**. The only time that a quadraplegic (or any disabled person) would get differential treatment is if their life became less viable than someone else's. So for example, in the very unlikely event that two people had pneumonia and they only had antibiotics for one person, they would choose which person was most likely to recover which may or may not relate to impairment, age, weight or whatever else (this would certainly be the case if we had a serious flu pandemic where resources were stretched).

The issue of viability usually arises in the absence of any competing needs. Take cancer in old age. If you are 95 years old and develop cancer, then you are unlikely to be operated on. Not because you're old, you're going to die soon anyway and you're not worth the money. But because you'd be fairly likely to die during a serious operation and if you made it through, you'd be fairly likely to die in the aftermath. Such treatment would be unlikely to do you any good. Very often, the more economic solution is the most ethical, saving the patient from the ordeal of an ineffective treatment.

Point is, it is not as if you go to the doctor and she sits back, strokes her beard and says, “Well, we could give you this life-saving drug, but I notice you've got a limp and a missing eye, so let me just calculate what we think your quality of life is worth.” The quality in the QALY is usually either about side-effects or the short-comings of a given treatment – it is never applied to an individual patient. When an individual patient's situation is novel enough to warrant discussion, the case is discussed by doctors and Ethics Committees and the like, not by someone with a checklist and a calculator.

But apart from his misrepresentation of the system, Singer's argument is inconsistent. Something I have always admired Singer for is that he works with an extremely simple version utilitarianism about which he has appeared to be consistent. Singer argues that we can determined what is right according to what maximises the amount of pleasure and minimises the amount of suffering for the largest possible group. This leads him to vegetarianism, since our pleasure in eating meat could not be compared to the suffering of non-human animals that are killed for meat. It also makes him a passionate anti-poverty campaigner because clearly, there is an enormous amount of suffering in the world which could be relieved through a relatively small sacrifice on the part of those of us who have money to spare.

Perhaps most controversially, he has argued that because a chimpanzee may have more capacity for pleasure and pain than a human being with very severe impairments, some non-human primates' needs should be considered as more important than some disabled human beings.

Although there's a lot wrong with this latter argument in particular, his arguments have been at least consistent with each other. They just start from a ropey set of premises.

However, never before have I seen him suggest that such matters are decided by consensus. Clearly, if you ask most people, non-human animals don't count nearly so much as humans – most of the world's population are happy to eat non-human animals on a regular basis. So surely if you ask most people how they would value their life if they were quadraplegic, their answer would be similarly unsound? Singer anticipates this point;
Disability advocates might argue that such judgments, made by people without disabilities, merely reflect the ignorance and prejudice of people without disabilities when they think about people with disabilities. We should, they will very reasonably say, ask quadriplegics themselves to evaluate life with quadriplegia. If we do that, and we find that quadriplegics would not give up even one year of life as a quadriplegic in order to have their disability cured, then the QALY method does not justify giving preference to procedures that extend the lives of people without disabilities over procedures that extend the lives of people with disabilities.

This method of preserving our belief that everyone has an equal right to life is, however, a double-edged sword. If life with quadriplegia is as good as life without it, there is no health benefit to be gained by curing it. hat implication, no doubt, would have been vigorously rejected by someone like Christopher Reeve, who, after being paralyzed in an accident, campaigned for more research into ways of overcoming spinal-cord injuries. Disability advocates, it seems, are forced to choose between insisting that extending their lives is just as important as extending the lives of people without disabilities, and seeking public support for research into a cure for their condition.
And here's the trouble. Some people with impairments experience far more suffering (for complex social and psychological reasons) than other people with the same impairments. Some quadraplegics, having come to terms with their injury, might consider their life equivalent to what it was without it and not be terribly interested in a cure, preferring to campaign for social change as a more realistic way of improving their lives. If as Singer implies, healthcare provision was rationed according to the qualiy of life of every individual then different quadraplegics would receive different treatments.

For one group, the health service would work on curing their quadraplegia but not going all out to save their lives, since those lives weren't terribly good quality ones. For the other group, the health service wouldn't worry about a cure (which doesn't yet exist, after all) but they would make every effort to preserve these lives, since they were still being thoroughly enjoyed.

And you could apply the same thing to everyone, according to their happiness or unhappiness. According to Singer's logic, the lives of happy people would be more important than unhappy people. And if it is ridiculous to measure this individually (as it is), then I don't see why disability should be the only differential. Surely most of us would agree that someone living in poverty has a lower quality of life than someone who is wealthy? In which case, any national health service should prioritise wealthier patients who are likely to benefit more from continued life and relieved suffering than someone who has no money at all. If anyone argues that poor life is as worthwhile as a wealthy life, why would we attempt to alleviate poverty?

In a wealthy country like the UK rationing on healthcare impacts on very few of us. There are flaws in the system, never in my personal or observational experience, have I known people to be denied the treatment they needed because of decisions about cost-effectiveness. Whilst there are some very tricky decisions to be made, I don't think it is reasonable to assert that different lives are weighed up against one another. Socialised healthcare is not in the least inconsistent with the idea that all lives have equal value.

Since I started writing this, Imfunnytoo and Pizza Diavola have written excellent posts in response to the same article.

* The monetary value of a QALY is a subject of ongoing debate. Research suggests that the British public think it should be about twice what it is, but whether or not we'd be prepared to foot the bill through taxation is another matter.

** Of course, disability discrimination does exist within the NHS, as does sexism, racism and homophobia, but that is for the most part about prejudice among healthcare workers, not the way the thing are set up. The greatest institutional problem as far as disablism is concerned is the chronic underfunding of mental healthcare.

Tuesday, July 14, 2009

The Unbelieving Optimist

Philosophy Bites was great this week, having boggled my mind – those are maybe best ones. Nigel Warburton interviewed Marilyn McCord-Adams about optimism and the Problem of Evil. The Problem of Evil is usually framed as a challenge to believers in benevolent gods; if God is all good and all powerful, how come such a lot of bad things happen in the world? Marilyn McCord-Adams is a funky theologian who has written a lot on the subject, but in this interview she handed the problem over to non-believers:
“...a condition of the possibility of an optimistic worldview being true is that exists a superhuman power that is good enough and resourceful enough to make good on the many and various horrors that riddle our world. So it's a pragmatic argument. It's a bit like Kant's moral argument. Kant says “Well the moral life is worth living. Moral endeavour is what makes human beings so special. But the moral life can be worth living only if God exists and there is immortality.” So I'm making an argument analogous to that.

“If you really open your eyes and see how riddled with horrors the world we live in is, and you still find yourself optimistic and idealistic, then a condition of the possibility of your posture in life being reasonable is a belief in a God that is good enough and resourceful enough to make good on it all.”
In other words, you can't be a true non-believer and be left with a shred of optimism. Without God, life is deeply unfair, extremely bad things happen and nobody's ever going to put it right. Which is a cause for pessimism.

She even concludes that maybe non-believers who find themselves to be deeply optimistic actually have a vague sense of a supernatural power that they're not owning up to. That is to say, or at least imply, that optimistic non-believers are in fact latent theists! This is a bit too much like the suggestion made by some atheists, that deep down, theists know there is no God and are willfully deluding themselves, so we'll forget about that bit.

So rationalism and optimism. As an attitude which informs behaviour, optimism makes sense in many scenarios which involve uncertain odds. If I try to write this post, then I might finish it – if I don't have a go, I won't. If I treat strangers as if we might become friends, then we are more likely to become friends. If I am stranded in the dessert with little water but I behave as if I am going to survive, then I greatly increase whatever chances I have.

There's an example of this on the biggest imaginable scale. Faced with climate change which could render the surface of the Earth inhospitable, we have to act as if we are capable of saving ourselves. And each individual entity – each country, each leader, each business, each household has to behave as if everyone else can be trusted to do their bit. Which given how we got into this mess to begin with – and how long we've known about the danger and failed to act – requires a tremendous leap of faith in humankind. Even so, it's a leap we absolutely have to make.

So optimism as a strategy is entirely rational. Wherever an outcome is uncertain, there is necessarily room for some hope. In such cases, it would be entirely irrational to chose to dwell on possible negative outcomes whilst working towards a positive one. That is a pragmatic argument.

Another problem we have here is the subjective nature of what the optimistic position looks like. My RE teacher informed our young minds that atheism was fundamentally pessimistic because it asserts that this is all there is - that there is no great reward in the afterlife and that when people die, they're gone forever. Yet various atheists – A C Grayling in particular springs to mind - have written eloquently about a single brief existence being in every way preferable to a trouble-free but purposeless eternity.

People are fairly invested in their own view of death, so a more subtle personal example. Some people consider me pessimistic because I accept that I am likely to be ill for the rest of my life. I hope I might get a bit better, but I am perhaps as likely to get worse. But I am optimistic about the future; I have a very good life now, there are a few little things I want to improve upon and I have every hope I shall.

I tend to regard "curebies" as pessimistic. First off, there's no pragmatic use for this optimism; unless you're involved in medical research, it is just waiting. And the waiting is a problem. You only maintain a strong emotional investment in an unlikely outcome if the alternative is intolerable. In other words, to me, such people seem pessimistic for my (sometimes their own) chances of a happy life despite illness.

In the same way, people disagree about what it would be to be optimistic about death. I would predict, although I've never seen any research on the matter, that thantophobes are evenly distributed between believers and non-believers. Few people want to die and all of us suffer when our loved ones die, regardless of whether we believe they are in heaven or nowhere at all (or indeed any of the other available possibilities).

So to the problem of evil and people. Perhaps Marilyn McCord Adams feels that optimistic non-believers are irrational because the human species isn't improving. We're not evolving into anything more virtuous. We will never get to a stage where everyone lives in peace and harmony with one another and there is no violence or want.

Personally, in the same way that I accept that my health is crap and likely to remain so, I am resigned to the fact that people are and always will be capable of great evil. Not just the tiny minority who perpetrate evil, but all of us! When things go really wrong in societies, lots of people end up doing very bad things and it may require saint-like qualities to resist.

And here, I think there is room for genuine optimism. Plenty of evil in the world, no doubt. But as societies progress, evil becomes significantly less viable. We better equip ourselves and each other to resist it. Nobody reading this owns a slave. Slavery exists in the world, but against global disapproval and thus there is much less of it. If anyone learns that you beat or otherwise abuse your spouse or children, you are likely to be stopped – this is not acceptable, it is no longer seen as your natural right. Despite having enough nuclear weapons to destroy our planet several times over, we've resisted the temptation to use them for over sixty years. Most countries in the world publicly condemn the torture of prisoners – many countries still use torture, but they usually pretend otherwise. It's not many hundred years ago that torture was seen a totally acceptable tool in promoting spiritual wellfare, let alone national security.

Of course, I live in a very privileged part of the world. But democracy and liberty are on the increase. And these things really do help protect us from evil. Okay, so we still have our murderers and rapists, but they are not state-sanctioned, nor are their actions accepted as a fact of life.

Marilyn McCord-Adams would most likely disagree with me. She asserts that there is no less evil in the world now that there was in Biblical times. However, given free will and all that, there is no reason why the levels of evil on Planet Earth should remain constant.

I would assert that there is very much less evil in the modern day UK than in Darfur just now; here, it is really very rare to die a violent death, or become disabled through violent injury, or be gang-raped. If this is the case, and if we accept that there's nothing magically virtuous about British people (a hard fact to take, but a fact nevertheless), then it follows that one kind of societal situation is better than another. So maybe in time, with human endeavour, life in Darfur and in other warzones and places where violence is endemic, can be greatly improved. And whilst world peace may well be a pipe-dream, there's no reason to imagine that we can't very greatly increase the proportion of the population who get to live their lives without the ongoing fear of violence and oppression.

Unlike those who believe in a Judgement Day, I cannot look upon a better future with certainty. People can be pretty thick when it comes down to it, and may yet destroy the planet, whether through excessive consumption, nuclear war or electing a reality-show contestant as World President. But it is this very uncertainty which should motivate us to fight against evil in all its forms. Should He exist, God's going to be pretty pissed off if we count on Him to sort out our mess.

Tuesday, July 07, 2009

It is a truth universally acknowledged

Some frivolous feminism to get me back into blogging. Last week, Feministe had a post and lengthy discussion about an awful new book about marrying for money (some books, I'm prepared to judge by their covers). Hat tip to Hoyden about Town.

I've said before that, in matters of the heart (and the goolies), people are entitled to their prejudice. If a person's age, looks, an impairment or the colour of their skin means you cannot find them sexually attractive, then you cannot be expected to act against this. So if you need someone to be wealthy before you can get with them, that's fine. But don't imagine there is a logical argument in there; it's a personal preference and may well be something – rather like possessing a boxset of Will & Grace – that doesn't reflect altogether well on you.

Feminist Jessica Wakeman defends the book and admits to such a preference;
"I know of great guys out there—journalists, teachers, non-profit dudes—who will probably make great dads. But I personally wouldn’t pair up with them because, realistically, our two salaries together just wouldn’t be enough to cut it for what I want out of life"
Now before I get onto the ideological stuff, I should say that I have every hope for Jessica's future happiness. Maybe she'll meet and marry a wonderful man who happens to be loaded. But I know a thing or two about love - I have white hairs and everything - and I reckon there's a distinct possibility she may well find herself in love with some red hot scholarly piece with an enormous vocabulary, at which point what she wants out of life will shift accordingly. Not completely, but perhaps significantly. Just as his dreams of building a time-machine and traveling back to marry Emily Dickinson may fall by the wayside when he meets her.

But like I say, we're all entitled to our prejudices in this area. It's the trend that's depressing. One commenter to Jessica's piece even said;
“I don’t say one should only marry for money but make sure you LIKE him and will learn to love him and he will at least be there for you financially.”
I have to admit that everything else this commenter wrote was sound, which is why I'm not attributing it - these sentiments are not unheard of. We've all known a few women who have been quite explicit in their preference for a partner who is much more wealthy than they are. Worse, I have had women who state such a preference go on to chide me for suggesting that looks actually matter in a sexual partner. Presumably, a lady is supposed to close her eyes and calculate her interest. Or perhaps do it with the lights off to save on the electric - every penny counts!

Wealth is neither a necessary or sufficient condition for happiness or even security. All the time, feminists are objecting to advertising messages which try to make us feel we need to spend vast quantities of money before we are fit to be seen in public, before our homes reach a minimal standard of hygiene and decency, before our children are safe from disease or shame or malnutrition or injuring their bottoms on cheap toilet paper. The idea that being rich keeps you safe is part of the same myth. Even in purely economic terms, money comes and goes and often goes a lot quicker than it came. In this regard, only politics can actually keep us safe - a decent welfare state and universal healthcare is a good start.

Feminism and materialism are incompatible. The idea that every human being is of equal worth is obviously incompatible with the idea that money has a bearing on a person's worth. Being a high-earner does not indicate that a person is happy, intelligent, educated, hard-working or conscientious - merely that they happen to have attained a job that pays well. Such a person is most likely to be white, non-disabled and to have been born into a wealthy family.

Earning less or being unemployed does not make a person feckless or lazy. If someone has several thousand pounds of debt and still finds the resources to expand his already extensive collection of celebrity toenail-clippings, this does not bode well. But in general, the best and worst people are fairly evenly distributed throughout the pay-scale. Women should know this better than anyone, since we generally do more work for less pay than men (I don't, but other women do).

Some people have argued that evolution has programmed women to seek out a provider for herself and her children, which manifests in a feminine preference for wealthy men. However, one has to have a very naive picture of how primitive family life worked and totally ignore the survival instinct, which is what has really driven the feminine preference for wealthy men for much of our recent history (by which I mean the last several hundred years).

If you have no hope of providing for yourself, because society won't let you work independently or won't pay you enough to live on, then it is not only sensible, but imperative that you find someone else to cover your cost of living in exchange for sex and other services - whatever it takes! Even if you are surviving, if the only possible way in which you might improve your situation is through an economically fortunate marriage, many people would consider it worth a punt. In studies looking at Lonely Hearts throughout the world, the frequency with which women mention a prospective partner's income or wealth indicators in their ads correlates with varying levels of sexual inequality in different cultures. If you have the means of providing for yourself - or even if you simply live in a culture that expects you to - you have far more sexual, reproductive and romantic freedom.

Not that I'm arguing that both women and men need to be locked in an equally ambitious and life-wasting pursuit of material wealth. I'm poor and likely to remain economically vulnerable for the rest of my life, but I have never considered compromising my love life in the hope of getting richer - not because I'm a sensible or virtuous person, but because I was brought up to regard my fate to be in my own hands. And of course, if we all worked less, earnt less and bought less frippery, the world would be a much better place. Feminism and materialism are incompatible. And it is easier for a camel to enter the kingdom of heaven than for a rich man to pass through the eye of a needle. But there is some hope for us all when it comes to love.

For one thing, the idea that people choose their partners according to a set of criteria is a little ludicrous. A person might think she has a checklist or a "type", but love doesn't work like that. In fact, the only people I've known to actually have had a checklist are unhappily single - they're engaged in a desperate search for something very specific whilst other equally good opportunities may be passing them by. One such friend spent some years looking for a Christian dentist who looked like George Clooney before realising that something very different but equally appealing was on offer. As I said earlier, I have my doubts that Jessica or anyone else would reject Mr or Ms Right if they showed up short of cash.

Even so, compatible people usually end up together by default. If you are very sporty and spend all your time running about or jiggling on the spot, my guess is the sort of person you could fall in love with will be a sporty type. You don't need to rule out prospective partners who aren't sporty because they're unlikely to fall into your path - or indeed find you attractive, you track-suited blue-bottle!

We tend attracted to the kind of people who might be attracted to us. We can sometimes feel demoralised by people whose romantic criteria would exclude us but we probably wouldn't want them anyway. Some people say being disabled narrows the spectrum of potential partners, I prefer the verb refines. Women who truly need a man to be rich before he is even a prospect are unlikely to be very easy-going or self-reliant and they are likely to be an unwitting source of pressure when the going gets tough. I daresay there are wealthy men who want to be wanted for their money - and are happy to run the gauntlet of losing their attractions if the money runs out - but I'm not sure kind of man that would be.

What a ramble! Still, more than I've managed for a good few weeks. Expect more sensible topics soon!

Friday, July 03, 2009

Messing about on the river

A little bridge on the River OuseYesterday was a really good day, after a good few weeks of rough. It was the half-way point of the year and my Dad's birthday, and my folks were looking after Alexander whilst Rosie was off singing on the South Bank. And it was probably the hottest day of the year, at least down South. So my folks, [ex], Alex and I went for a picnic in the woods before going rowing on the River Little Ouse. It was absolutely gorgeous and a splendid time was had by all!

The river is runs roughly along some of the border between Norfolk and Suffolk, but it's kind of tucked away from everything. And we didn't see another soul that afternoon - nobody on the river, nobody on the bank. Lots of horses, waterfowl and absolute swarms of electric blue and black damson flies. Did you know that when two damson flies mate, they make the shape of a heart with their bodies? I didn't, now I do.

Alexander at the tillerAlexander is talking much more than even a few months ago and making a really conscientious effort to learn new words and concepts – for ages, he was speaking, but wasn't really interested in conversation. Now, he's asking lots of questions and often whispers a word someone has said back to himself to help it sink in. And he has some long words, including a disturbing variety of car makes and models.

He was very impressed with my powerchair and said it just like a helicopter. I think this is because it has a joystick, not because it can fly (I don't like to fly it in public; people get complacent about accessibility when they know you could just fly between floors if you wanted to).

The banks of the River Little OuseIncidentally, my sister was singing at the South Bank Centre with a group called the Celestial Sirens, who did the music for this week's and next week's Woman's Hour Drama Sacred Hearts on Radio 4 - you can still catch up listening to this over the weekend if you like.

Will blog properly really soon, I promise!

Saturday, June 27, 2009

Still here

Excuse my absence, I'm having a rough few weeks. Nothing remarkable, just sleeping lots and not being terribly awake in between. Hope everyone in the Northern Hemisphere is enjoying good weather. Will blog something properly soon.

Wednesday, June 10, 2009

This is the real world #1 Friends & Mentors

I'm waiting for people to stop writing articles about how rubbish or dangerous the Internet is. There have been so many in recent months that when I tried to track all the links down and provide all the hat-tips, it'd be a post in itself. I'm sure you'll have seen them, not those stories in which people have made mistakes with (relatively) new media, such as James has documented here, but stories about Twitter or Facebook rotting your brain, the death of blogging, young people being made stupid by the Internet and so on. Special mention must be made to Ira who recently wrote an excellent defense of Web 2.0 and has frequently argued for social networking as a tool for learning.

I wrote briefly about my passive social life a few years ago. On-line or off-line, it is all the same to me. I think I have a very good social network. It is quite hard to say that without sounding like a boast, but it's mostly to do with my good luck and the gullibility of a handful of caring and interesting individuals who imagine I'm worth their investment. I have a few close and precious friends for whom I would walk through fire, so to speak, and then I have slightly less close but nevertheless valued friends and then a load of interesting friendly acquaintances. And regardless of how we met, I hardly ever see any of them face-to-face.

I wouldn't choose this, but that's the way it is and the way it has been all my adult life. And although I would love to have more face-to-face contact with my friends - I wish I had the energy to e-mail them more often - I do think there are real advantages to having at least some of your social life on-line.

So I wanted to write about the positive things about on-line social contact which would be positive for anyone, not just a poor lonely invalid like me. It'll be at least two posts, but I might write about something else in between. So today;

Interesting Friends and Uninhibited Mentors

I was talking with a friend about this (actually talking, with our voices) and she said, “I never trust people I met off-line. You have to go through so much social rigmarole, you never really get to know them.”

I laughed. I said I had friends, I didn't say they were normal.

Normal for people of my class background would be to have a circle of friends drawn from people the same age as me, in the same income bracket (often the same occupation or employer), with the same shape families and the same interests. Sometimes such friendships can be precarious, based as they are on so much common ground; if a person gets sick, loses or changes their job or gets divorced, they can find themselves cast out. At other times such friendships are more like family ties and as such, a person can wind up bound to friends they don't actually like or get on with. Not that the quality of a friendship is inversely proportional to the things you have in common, every single friendship is unique and works slightly differently. In any case, I'm excluded from all this because I got sick and don't fit in with anyone.

It's not like my social circle is massively diverse. Most of my friends live in the UK and most of them were born here. But in every other superficial respect they are all over the place. Their age range spans over thirty years, they are in very different lines of work with very different interests and domestic arrangements. And thus the common ground, which I guess must exist in all friendships, tends to be something reasonably deep.

Now, I am the kind of unBritish person who strikes up conversations with strangers, but it is a quite complicated business getting to know someone - really know them - off-line:
  • You meet. You talk. When you first meet someone, you are likely to talk about the weather and whatever immediate situation you find yourselves in (a party, a train journey, the checkout queue etc.). You are not likely to prize a great deal of information from them at first - it happens, but it's not usual. I don't meet many new people off-line because I spend so little time out of the house.
  • Social etiquette is such that you don't exchange details or arrange to meet again with someone you've met only once unless you are trying to get into one another's thermals. So your next several meetings are left down to chance. If you belong to the same club or have friends in common, then this is hopeful. For me, because I don't get out much, this is hopeless.
  • Only much later, after several face-to-face meetings, do you begin to really know what a person is about, and you form a bond which means that that person will miss you and bother to call or e-mail when you disappear for months on end. Since I don't get out much, it usually takes years to get to know someone this well off-line.
It's not always like this, of course, and the few friends I have made off-line in the last twelve years have broken this pattern. On-line, things are easier. You don't need to walk away from that first conversation, you don't need to worry about being seen to be too keen or not keen enough because you can talk over a period of days or weeks. And then you're in touch. You don't need to wait to meet again, you know where to find one another whenever you like.

And so you get to know people deeper, quicker. You get to know people who you would never have known otherwise. Nothing to do with geography, not really. Often, the conversation that we needed to have in order to... fall in platonic love? would never have taken place, even if we were next-door neighbours.

This is especially the case with those people, only some of whom became my friends, who have taught me stuff. All sorts of stuff, explained facts to me in science and history, explained theories in philosophy and sociology and imparted a great deal of wisdom. You can get so much from books, but a person who is prepared to explain things, listen patiently, answer questions and explain again is invaluable. And if the fact I left school at fifteen and have next to no formal qualifications ever surprises anyone, that's partly about reading and listening, but partly about all the (generally) older and wiser people who let me feed on their brains - most of whom, I have found on-line.

And this was especially the case when I was younger - what middle-aged man or woman engages in a serious conversation with a teenager who they are not either related to or employed to talk to? On-line of course, people don't necessary know your age, and even if they do (a) they can't see you so it's not an ongoing distraction and (b) nobody else is looking on, wondering what's really going on between you.

This is another obvious advantage (and the great peril) of on-line social contact. The observations of one's wider social circle can be very useful, sometimes a life-saver and are particularly important when it comes to young people and anyone who fancies themselves in love. Nobody I know has ever had a crime committed against them by someone they met on-line, but there are stories about romantic relationships with people who were not at all as they seemed. This can happen off-line - in fact, it happens all the time - but there are usually many more opportunities for other people to point out what the lover cannot see.

However, the judgment of on-lookers can also make things complicated. We have this idea that the main purpose of non-familal social contact is either straight-forwardly sexual (pairing off) or connected to sexual identity (shopping, watching sport etc.). Many people remain suspicious of men and women who are very close friends (unless he is gay and she is straight - almost every other combination seems to arouse suspicion). And it's not just about sex. When you have friends a lot older than you, there is the assumption that you are plugging some psychological hole in one another's life - your older friend is supposed to be the parent figure you've been missing, you their substitute child and it's all rather unhealthy.

One relative has a delightful habit, whenever I mention a friend, of asking, "What's wrong with them?" on the grounds that all my friends must be disabled (or at least, that's what I took it for - now I've written that down, they might mean something else entirely!).

Being on-line can makes it easier to be friends with whoever you happen to like, however weird such a friendship would look to other people. And you're all great, wherever you fit in!

I feel I have now outed myself as a really sad case, but as I shall explain in my next post on this subject, I am not in the least shy or insular - and the Internet has saved me from being so.

Friday, May 29, 2009

Gender Presentation & Disability

The conversation started at Flip Flopping Joy where BFP asked What is Butch?. Cripchick took this up in On Gender and Disability and Wheelchair Dancer gave her perspective in Butch/ Femme - Crip. There are great discussions in the comment sections of each of the three posts.

My contribution is going to be a little feeble and rambling and has taken all week to get round to, as I am a bit of a slug next to these blogging butterflies. Still, Cripchick and Wheelchair Dancer's posts certainly helped to buck me up when I faced clothes shopping on Tuesday.

Clothes shopping, especially in person, is a deeply humiliating experience for me and I only go about once a year, only when I really need to. I often get much the same feeling as I did when, aged nine, I made a single defiant attempt to join the school football team. There were no rules against it, and I knew I was as good – which is to say, as bad – a football player as any of the boys. Suffice to say, the boys were rather hostile and, for the very first and last time, I was physically intimidated by my classmates. So when someone finally kicked the ball my way, it seemed directed with such malice that I ran away.

This game is not for the likes of me. Gender presentation isn't all about clothes or shopping, of course, but I am most conscious of my outsider status in clothes shops and at beauty counters. They display things close together and on high hooks and rails. All the mannequins are standing up. They have bright lights and loud music. And the assistants can be so condescending, as if I am a child playing at dressing up. They huff and puff if you ask them for help, they roll their eyes with impatience, they sneer at your choices and it feels the height of rudeness to leave without parting with money. I guess the awful ones might be awful to everyone, but I need help, I need a little patience from them. I really do leave shops because I get intimidated. Some of those women have really long nails!

At one huge branch of a well-known high street store (post-DDA), I was told that the entire ladies' department was on the top floor and there was no lift. The assistant did to offer to go fetch things - if I knew exactly what I was looking for. I said no thanks, as I'd need to try things on. She said I might as well use the men's fitting room. Nobody would mind.

I do hope the men would have minded to have me in their fitting room. I daresay in some future utopia we can all take our clothes off in one another's presence without embarrassment, but until such a point, I really wouldn't like to think I'm that safe. They might well have found my presence somewhat less unsettling than that of the pretty blonde shop assistant, but still.

There may be advantages to my apparent genderlessness, but it goes hand-in-hand with my infantilisation. It's not that I'm just cut out - which would be bad enough - I am categorised as something else. I'm with Patti Smith in that “Being any gender is a drag.” But you can't avoid it. If you try to reject the idea of your physical presentation as a form of communication, you're still communicating something all the time. If I resign myself from the game, I can never truly leave the pitch. And I'm not entirely sure I want to.

The first time queerness entered my dress-code was when I was seventeen, my Dad made some remark about a woman he had spoken to who was “probably a lesbian” because she had her ears pierced three times. We had an argument about it and later that day, I went out and got my ears pierced three times. Still waiting for that penny to drop.

In her response to BFP's post, Sutton writes
“... for me, the whole femme thing plays out the stereotype of females in our society as frivolous, superficial, silly, empty-headed, vain, spendthrift, allowing themselves to dress for (or in the case of expensive baubles, be dressed by) men, blah, blah.”
And I think this is where my game begins. Even if my mind was full of fluff and kittens, I haven't a hope of aspiring to any mainstream feminine “norm” - nor would I want to (well of course a part of me would like to be beautiful, but I'd also quite like the power of flight). Myself, I like skirts and jewellery and what my stylist friend calls romantic clothes, but I can't be doing with discomfort and material frivolity. I can't cope with it in terms of pain and energy levels, and I can't afford it. So I break the rules.

Cripchick says
“don’t know that i’m femme, butch, etc, i just know that i like to play with roles and gender. for me, the word to describe this gender play or personal recognition of identity i’ve been having lately is cripchick. cripchicks (or gimpgirls) are fierce, strong disabled women who interact with the world on their terms. ”
Not exactly fierce, but this is more like it. Most of my clothes are either second hand or hand-made. My favourite jewellery is hand-made (though mostly by other people). And like Cripchick, I adjust things all the time to work for me – and to last longer, so I don't have to go shopping again. I find pretty things to make myself more comfortable and to compensate for my oddities, both physical and aesthetic. I'm with William Morris on beauty and functionality.

The effect is not startling. I look a little eccentric but I don't turn heads with it. I'm certainly not as glamourous as Wheelchair Dancer or as funky as Cripchick. But I am playing with it.

Is this all a bit femme? Given that two of Wheelchair Dancer's prospective lovers said she was butch, possibly not. I'm sadly lacking in physical prowess and am a rather womanly shape, but I get called unfeminine because of the way my mind works, because of the way I see myself in the world (I've only ever run away from small boys with balls and shop assistants - otherwise I'm a force to be reckoned with!). I've never been called butch but was once called a bulldyke, which made me laugh out loud.

Is this crip? Maybe so. Maybe there is something special about our adaptive style. Just as maybe there is something special about our adaptive sexuality.