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.

Just a little bit longer

Today, AJ and I have been together for ten years. Wow! It doesn't feel anything like ten years. I think that's a good thing. Ｉasked AJ if he fancied spending the next ten years with me, and he said, "I'd certainly like to have a go at the next five, but can we see how we feel after that?" Sorry for not having blogged in a while. It is not that I haven't wanted to or can't think of anything to write about, but over the last few months, I have either been working very hard trying to finish by B. F. Novel, or being ill. Probably about half and half – which isn't too bad a balance. And it is very very almost there. I know I've probably said it before, but I'm probably not going to say it again. After that, I shall probably be bending your collective ear once more on all manner of subjects. And I might blog again before then. But in the meantime I beg just a little more patience.

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? Madness 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. Secrets. 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. Shame. 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.

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 AJ and my going to see Star Wars: The Phantom Menace (ten years – our proper anniversary is in November), 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.

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.

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.

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.