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.

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.

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!

Messing about on the river

Yesterday 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 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).

Incidentally, 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!

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.

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.

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.