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, AJ, 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.

Nerves.

AJ is going into hospital tomorrow to have his gallbladder removed. It's not a very serious operation and it's commonplace, but I'm ridiculously nervous about it. I hate anyone I care about being in hospital - it's quite an irrational thing really, but I shall feel much better when he's home again. And hopefully he will because the gallstones have been very painful at times and very restrictive the rest of the time. I asked him if there was anything he wanted to say to me in case he died, anything he'd like to express in case we never saw one another again. He said, "Yeah. All the passwords for everything are in a file in my Documents folder." How touching. Alexander (presumably with help) made a card to wish AJ luck with his operation. I think the green pom-poms are supposed to represent gallstones. AJ says gallstones are bright green, so it could be quite realistic. We're going to my folks' tonight, then Dad's given AJ a lift into hospital tomorrow and I'm going to stay with my folks. AJ should be out on Wednesday. Then he'll need a bit of looking after again, hopefully not for long. Fingers crossed they can take out the gallbladder with keyhole surgery. We now have a kitchen sink, although AJ did manage to put a large hole in the bathroom door last week. You could stick your head through and say, "Here's Johnny!" when someone else is on the loo, but the novelty worse off rather quickly and we've put a sheet of paper over it for now. There's no fixing it, we need a new door. So two steps forward, one step back.

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.

Older Mothers: Sexism, Ageism & Disablism

Elizabeth Adeney is soon to become the oldest new mother in Britain at the age of 66. There has been lots of news and blog coverage, much of it condemning her actions as selfish and reckless. You can probably gauge the two ends of the spectrum of opinion by checking out the Mail article (in which the poor lady becomes a "desperate divorcee") and the post at Feministing. Ms Adeney has done an extraordinary thing which I can't empathise with one bit, but almost every criticism I have heard against her invokes some time-honoured prejudices around gender, age and disability. These include: Older women having children is against nature. Nature is a git when it comes to reproduction, has nothing to do with morality and most of us defy it. Personally, I intend to enjoy a lifetime of acrobatic sex without ever getting pregnant. In a society where the vast majority of our children will reach adulthood, all but a tiny minority of men and women control their fertility artificially. Most women (not all) can have children naturally up until their mid to late forties, but because they rarely choose to anymore, we have this idea that the natural cut-off might be much sooner. As women get older, their fertility does begin to decline. It's likely to take longer to get pregnant. Natural conception above the age of 50 is rare, but not impossible. Men's fertility declines from an earlier point, but does so very slowly, such that it is possible for some men to have children in much later life. The fact that a woman requires technology in order to do the same thing doesn't, by itself, make that it wrong. It could not be paid for with public money - I'm anxious that some American commentators think it was, and imagine this is the sort of thing that universal healthcare is expected to cover. No way! The NHS won't usually give IVF to anyone over 40, but again this is not about morality, but viability. Most IVF cycles fail anyway and it is an expensive and traumatic procedure. As a woman with fertility problems is even less likely to get pregnant over 40, it is felt that it isn't worth (a) the money or (b) the heartache for the prospective parents to go through this. But there's nothing wrong with an individual going abroad and paying for treatment they cannot get here. Personally, I would encourage people who cannot have children naturally to foster or adopt. There are a great number of children in the UK whose need for a loving home is far greater than any adults' need to have a child they happen to have given birth to. Well I think so. But it's not my place to tell people what to do or object to people doing what they wish to. Older women have disabled babies. The older we are, the more likely it is that mutations will take place in the DNA of our gametes. This applies to both men and women. For women, this results in a cultural anxiety about older mothers who are more likely to have children with certain impairments, such as Down Syndrome. For men, this results in academic anxiety that too few older fathers might slow human evolution. Older fathers may be more likely to produce children with autism, schizophrenia and a range of physical impairments, but wink wink, nudge nudge, proves there's life in the old dog yet! Of course out of all the families you or I know, there is unlikely to be an obvious connection between older parents of either sex and disabled offspring – not because the statistics lie, but because the statistics are about an increase in a fairly small risk. Most disabled people were not born disabled. And of course, most disabled babies are born to women under the age of thirty-five simple because most children are born to women under thirty-five. The only way you can effectively avoid having a disabled child is not to have a child at all. At my school, where about a third of my classmates went to Oxford and Cambridge, I had one of the youngest mothers among my friends. Mum had me (second born) at 27, whereas most of these posh ladies with the gold-chain handbags had had children in their mid thirties or later. The more affluent and well educated a woman is, the older she is likely to be when she first has children, and we know what having educated and affluent parents does for one's life chances. So I'd guess being born to an older mother both increases your chances of being born with some impairment and increases your chances of a high IQ and financial affluence. Statistically speaking. Women who are likely to have disabled children shouldn't have children. As described above, it's not a matter of likely, but what if it were? Trouble wrote a bit about this in response to the comment thread at Feministing. Mutation is not a bad thing – it occurs in our cells all the time, whoever you are, and it is necessary for evolution. Most things we identify as mutations we perceive as negative, although every step we've made from the primordial gloop has involved mutation. So the point about human evolution and older parents (as the same principle applies to both sexes) is valid - though I have my doubts about what conclusion, if any, should be drawn from that. Some mutations result in children with impairments, but the child and the mutation go hand in hand; there is no cruelty in having a disabled child unless you think that that person's existence would be worst than if he or she was not allowed to exist. And most people don't actually believe that at all. What some people believe is that the rest of us would be better off if (some) disabled people didn't exist, such as individuals whose net financial contribution is destined to be smaller than the cost they incur to the state. Like me! Yet even I would argue that I have intrinsic worth. Not everyone feels this way. AJ certainly contests this – he says I should be put out of his misery. But I was playing Tainted Love on the ukelele at the time. A woman who is disabled or likely to become disabled shouldn't have children. Mary covers this very nicely in her BADD post, Well Meaning Insults. Seahorse and Frida also write a lot about disabled parenting and the prejudices they encounter. Ms Adeney is in excellent health, but her chances of becoming disabled within the next twenty years are significant - far greater than for a woman twenty or thirty years her junior. Commenters are anxious that she won't be fit enough to cope with a small child and that the child should later become an enslaved young carer. This is sexist as well as disablist - people do not express nearly so much concern about older or disabled fathers. It all hinges on the idea that a mother must fulfill every conceivable need of her child without outside assistance. She must lift, carry, bath, change and entertain the child twenty-four hours a day and nobody else is allowed to help. No other family members can help (unless Daddy is some kind of superhero who overcomes his every masculine instinct to change the occasional nappy*) and certainly no outside party should be employed to help. Of course, nobody parents like this and it would be pretty unhealthy if they did. People have always outsourced some practical aspects of child-rearing, to other family or community members and paid employees - although this became disapproved of in modern times with the rise of the isolated nuclear family and the idea that the mother is the only adult with whom the child is safe. Yet we don't condemn those fathers (they still exist) who perform almost no hands-on role whatsoever. Of all the ways in which a parent can fail their child, being disabled isn't one of them. Older mothers confuse people and invite their children to be bullied As one Daily Mail commenter summarised all possible objections to a woman having a child at 66; "Think of the raise eyebrows at parents evening!" This same argument is made against gay parenting, single parenting, disabled and mixed-race parenting. You can't make the most important decisions of your life on the grounds that you might confuse some ignorant people and invite their ignorant children to make fun of yours. Okay, so it is fairly safe to assume that your average 66 year old with a small child in tow is its grandmother or even great grandmother, but that's not going to be impossible to work around. AJ was once mistaken for my father by a doctor in A&E - I wasn't offended, rather I laughed. And laughed and laughed. And then laugh again every time I remind him about it. As for the children, a schoolmate once mocked me for the size of my father's nose (not much, it was just one of those ridiculous taunts children come up with). Dad doesn't have an especially big nose (there he is, you decide), but even if his nose was enormous, should he have considered getting a nose-job before he had children? Should parents have to wear a uniform to stop children taking the mick out of other children's parents' dress-sense? Bullying can be a soul-destroying experience, but you don't prevent it - can't prevent it - by removing potential targets of mockery from a child's life. People have also commented on the fact that Ms Adeney is single and have pulled out all those clichés about single parents. The only remaining issue is the fact that the lady will be approaching her life expectancy in the next eighteen years - I'm not sure she'd get a twenty year loan from the bank. This strikes me as by far the biggest potential issue, although it's none of my business. And it is probably safe to assume that this issue has been very carefully considered, and arrangements made accordingly. It is a very bad thing to lose a parent when you are still a child (it is a very bad thing at any time), but the possibility can be prepared for to a certain extent. *Jeremy Hardy once recalled being on the bus with his eighteen month old, when an elderly woman, admiring the baby, asked if Daddy had changed a nappy yet. To which Hardy replied, "No. You're supposed to change it? I was wondering why she always smelt so badly."

Auntie Intermission

I am sleeping a lot at the moment and working on my book when I'm awake - which isn't for very much of the day at all. So here's a brief update on Alexander, who I saw the weekend before last. As you can see, the child gets no less beautiful. His vocabulary is very slowly building up and he can say all the numbers, though thankfully never in the right order (he's not yet three! - I keep having to say this, especially to his grandmother, who takes everything he says to heart - if she starts this now, she will be completely broken-hearted before he's ten). He demanded to know what a Dalek was (Mum has Dalek coasters - she likes Daleks) and I explained about The Doctor and Davros and everything. "What are the buttons for?" he asked. I didn't know. What are all those lumpy bits for? I suggested sound-proofing, as the Daleks have very noisy digestive systems. He seemed happy with that and made a comment about "Windypops." which I thought was rather crude. I also learnt that Alexander's favourite animal is a lion because it says "Roar!". Incidentally, the instructions for the inflatable paddling pool my parents got for him included the warning "Do not place on top of sharp objects." Hmm.