Essential Winter Style Tip #2

Today's style tip is one for the wheelies:

Avoiding Wheelchair Blanket.

Wheelchair blanket is the tragic and psychologically debilitating condition in which a wheelchair-user finds themselves with a blanket - usually of a plaid pattern - placed over their knees. Whenever I see wheelchair users in this situation, I assume that someone else put the blanket there; certainly every time I have suffered wheelchair blanket, it was entirely non-consensual.

Not only is this a decidedly unglamourous look, it is also a little impractical; the blanket slips down, gets dirty at the bottom and can even get trapped in the wheels. One can get specially designed wheelchair blankets, which often appear like the sort of plastic body-bags you see in crime dramas except with a hole for the head to stick out. Nice.

There are good reasons why this condition occurs; (a) a wheelchair-user's legs become much colder than those of a vertical type on account of not walking and (b) immobility causes or exaggerates existing problems with circulation, making the wheelchair-user's legs colder still, and rendering the feet prone to freezing and falling off.

Of course, a wheelchair-user can hope for a cozy arse; the wheelchair-user's rump remains well-insulated, usually against a cushion or at least a layer of water-proof unbreathable fabric. These means that it is not merely a question of dressing up like an Artic explorer, since one likely to get rather overheated in the posterior and fiddly bits.

So basically, this is how to keep your legs as warm as possible without resorting to the accursed blanket. I'm not sure I've ever combined all of these at once, but they all make a difference:

• Hairy legs. If you get very cold legs, then chances are, nobody catches sight of your legs between September and May, but even so the Hobbit look is very in this season, as are an array of Tolkein-inspired style innovations. In jewellery, the ring is the new body-bar.

• Massage the feet and legs before going outside. Anything that will stimulate blood-flow will help. Especially if you use something warming, some slimey stuff with cloves, ginger, cinnamon etc. in it. Deep Heat muscle rub or Olbas Oil will do the trick, if you don't mind spelling like you've got a cold.
  

• Wear fishnet tights. Fishnet, mesh or crocheted tights or stockings are superb at keeping your legs warm whilst still be being nice and breathable. It is the string-vest principle. Those big burly men on building sites, in my experience, are all wearing fishnet tights under their jeans to keep warm in the winter months. Of course, fishnets will only keep you snug if you cover them up with other layers of clothing. Oddly enough, the place which I have found sells the nicest and best quality fishnets at not unreasonable prices is M&S. I know. The shame!

• Over the knee socks. I have been wearing these for many years, but it would appear that Victoria Beckham, following my example, has started doing the same. Thus over-the-knee socks are currently quite widely available in the shops. I would source them from eBay myself, because I am a cheapskate, but you can get a number of different colours from Tightsplease and I discovered the wonderful US shop Sock Dreams, which has a huge range of OTKs.

• Lace-up boots. All the boots should have laces on them in my opinion, but they are ideal for our purposes because they can be adjusted to fit over however many pairs of socks you need to wear under them. The very funkiest boots for wheelchair-users are New Rock Boots, as worn by Mik Scarlett and many a cybergoth wheelie.
  

One great advantage of not walking very far is that, unless you have interesting feet, you can buy cheap shoes which last forever. I've had my lovely boots for years, and every now and again I give myself a totally new look by replacing the laces with different coloured rattail, which is about 25p a metre. People hardly recognise me after such a transformation.

• Remember old-fashioned underwear. Long-johns, petticoats, pantaloons and so on; people used to keep perfectly warm without synthetic fleece or waterproof fabrics. Personally, I mostly wear long skirts, so it is a matter of wearing another skirt underneath. You can buy such items at great expense from historical costume shops, but underskirts especially aren't that tricky to put together yourself (make a bit tube, sew elastic round one end, basically).

Uh... that's all I can think of just now. I'm sure someone else will have some suggestions.

Essential Winter Style Tip #1

My Mum and I went shopping on Monday, which was quite an adventure. She complimented me on my incredible fashion sense, "You always wear things that go together," she said, "except sometimes when they don't."

So since my brain is in such a state at the moment and because I am in a funny kind of mood, I thought I would post the occasional brief style tip so that you too can benefit from my remarkable aesthetic taste and so that you too can look fabulous this winter!

First, this seasons most style essential tip. Metallic fabrics are all the rage this winter; all shades of lamé, spandex and other fabric I don't know the names of with glitter and sequins. And not just on shoes and handbags; sparkly is most definitely the new beige.

Topshop have a number of different pairs of foil leggings, including this magnificent pair for £18. Now, given that they have been placed on a ideally-proportioned mannequin and photographed in the best possible conditions, one does wonder how anyone who isn't a professional dancer or indeed, a magpie might possibly be attracted to such an item.

That's right; this season's most essential style tip is

Pink metallic leggings: Just Say "No!"

Especially if you have external genitalia.

The spirit is willing, but my brain has leaked

I so desperately want to write something, anything, but my head still isn't working. At least this week, I am getting more bursts of mental activity. I have several bits of notes about my book, bits that might become blog posts, bits of e-mails, letters, and the answers to my bloody DLA renewal forms (they do pick their moments*). I have lots of ideas. I'm also still having significant computer troubles, too tedious to go into but jolly frustrating.

I know I am gradually getting better but it's not nearly better or soon enough.


* Actually, there's some advantage to filling in benefit forms when you've just had a bad patch, since it is still clear in your mind how bad it can get. When things are going well, you're inclined to write, "Well, I do have one or two problems, but I'm fine really!" Depressing business though.

Oh my Dalek, oh my Dalek, oh my Dalek Clementine!

Today was my Mum's birthday. She is apparently now 39, which is pretty impressive for someone born in 1953. I did finish making her present, which I forgot to photograph but [...] responded to my suggestion that I might be up to baking a cake this week with some rather strong language. Good job too, as this meant that Rosemary had to improvise something and thus...

A Dalek Cake! And partly through the power of blogging. See, Lady Bracknell's Editor wrote about her cake-decorating and Jess wrote a comment giving a link to the Flickr pool of Dalek Cakes, which really is... something. Mum has always a had a thing about Daleks; the very first film she took us to see at the cinema was Doctor Who and the Daleks when it was being shown at the Ipswich Film Theatre (which shows old films, foreign-language films and very rude films of unquestionable artistic merit which can't go on at the normal cinema - Doctor Who and the Daleks came into the old category, in case anyone wasn't sure). So it was a very appropriate theme for Mum's birthday cake, but one Rosie might not have thought of if it wasn't for me ol' blogpals.

And as you can see, it is more than up to standard to join the photo pool. The accompanying biscuits were made using a Dalek Biscuit Kit available at Sainsbury's.

We all sang Happy Birthday in the style of Daleks (instead of doing the "Hip hip hooray!" at the end, you have to break into "Exterminate!") and then we, well, exterminated it. And very nice it was too. At one point it had sparklers attached but they had kind of sparkled out before I had the chance to take the photo.

I tried to take a photo of Alex with my mother, his Superbat, but they were all blurred, so you get Alex and his Mummy instead. Alexander was fine; his current obsession is talking on the phone. Only anything will do as a phone, which he will put up to his ear and babble at. His preference is for a real phone, which makes noises when you press the buttons on it, but a shoe-horn is apparently an adequate substitute.

Rosie has recently started giving music lessons for a few hours once a week during which he stays with a child-minder, and perhaps as a result, or perhaps as a complete coincidence because that's where he is in his development, he has entered that phase where he gets really upset when she goes away, even just out of the room. But all babies go through this and I've seen much worse (rephrase; I have been subjected to much worse as a teenaged babysitter).

First time I've been out of the house in weeks and weeks, so that was nice too.

Mother doesn't always know best

I had a go at a proper blogpost! Fingers crossed. And before I depress you with this little dirge, Jack"O'Lantern"P has had a really good idea for later this month - we're all to write spooky stories, which we'll publish on sundown (whenever that happens to be where we are) on Halloween. Do go over and tell Jack if you're joining in.
......

The mother of fifteen year-old Katie Thorpe, who is has severe Cerebral Palsy, is looking into whether or not it is legal to perform a hysterectomy on the lass in order to relieve her of the indignity associated with menstruation. The BBC News story is here; Penny has kindly collected blog responses here. Now I have to say, if this actually happens, I will eat my hat - the one with the really wide brim, the feathers and everything. Really. So actually, I don't find the case terribly interesting; of course a person should not have such a serious operation for non-medical reasons, let alone in a case where consent cannot be obtained.

What I do find interesting is attitudes towards the mother. I have massive sympathy with this lady. I think it's quite possible she may have been misled by well-meaning doctors, is going through what must be quite an ordeal to argue for this, especially in the media where she will undoubtedly be touched by criticism and, I believe, all for nothing. I'm not sure I understand why a mother in this position would quite be so anxious about the issue of menstruation, but perhaps it has become a focus of fears for the future*? Don't know, none of my business.

But what happens to her child, or any child in my society, is my business, and this is where the press coverage got a bit weird. However, to be completely fair, it got weird in exactly the same way it did over the case of Charlotte Wyatt.

Charlotte Wyatt, you'll remember, was a teeny weeny baby who was born three months prematurely. She was very poorly, and there was a question as to whether she should be resuscitated in the event of her stopping breathing. Usually, doctors and the parents would talk through and make such a decision together, but in this case relations broke down; the doctors said they wouldn't resuscitate and the parents fought this decision. This went to the courts and the judge found in favour of the doctors.

At the time, it was said that Charlotte's life was all pain and suffering and death was imminent. And yet, this was four years ago and she's still here.

Now the two cases are obviously very different. The decision not to resuscitate is often made where someone is very ill or very elderly, and usually there's very little moral ambiguity. Resuscitation can be a violent process and medicine does not have a principle objective of keeping a heart beating for as many days, hours and minutes as humanly possible; the decision not to resuscitate is usually a matter of This person is dying; there's no point trying to stop it when the inevitable happens. Many people, myself included, felt that the very wording of the judgment in Charlotte's case was more about her being disabled and therefore understood to have a poor quality of life and poor future prospects for her quality of life, rather than the belief that she had no hope of survival.

Meanwhile, it is extremely unusual in the UK to perform a hysterectomy on any young woman, let alone a child, and even then it would be only done in extreme circumstances, as a last resort.

However, what the cases do have in common is the press coverage, and people talking about the case, immediately hone in on the parents. It should be up to the parents to decide; some commentators talk as if this is an entirely private decision which should be left entirely up to the mother. Others declare that these people must be terrible parents for wanting X course of action for their children. Thing is, how we make these decisions as a society should have sod all to do with the parents; we don't allow parents to imprison their children, cease their education, marry them off or to discipline them with injuring violence. But this is different. These children are disabled.

I think there's a real danger in imagining that all parents of disabled children are or should be saints, or somehow ¨ber-parents, incapable of the humdrum human fallibilities that exist in all other parents. Some of them are going to be brilliant; the parents of disabled children I know personally or feel I know through reading blogs are superb advocates for their children. And I do have sympathy with the others; whilst it is okay for a disabled person to occasionally crack and say, "Woe is me! I wish I were normal!", we're a little unforgiving when parents say the same about their children - even in cases where their lives have become inextricably linked and where parents are disabled by proxy**.

And as a society, we're not great with these families. I don't believe we should be handing any medals out, but practical and financial help, support from employers, equipment, state care and respite provision, as well any support we can offer as family members, friends and neighbours. The parents of disabled children are not angels, so we shouldn't put them in a position where they'd need to be angels in order to survive. This is a feminist issue as well as a disability one, because women make up the vast majority of those providing unpaid care.

All that having been said, the state must intervene in certain matters which could have a dramatic effect on the welfare of a child - like whether they are going to have major organs removed. Some of this stuff is explicitly covered by law, which has nothing to do with how lovely a parent is. Where it is unclear how the law might be applied, intervention has to take into account several different perspectives. These will include;

• The child. Every effort should be made to try to ascertain a child's opinions on their own healthcare. Children cannot give proper consent (I realise in law, it's a little more complicated than that), very young and severely impaired children cannot offer any opinion whatsoever. However, every effort should be made to get some kind of gage of the child's hopes and fears directly from the child.
  
• The parent(s) or principle caregivers. They are likely to have a very good gage of their child's functional limitations and what the child is like as a person. They are important stake-holders because major decisions effecting their child are likely to effect them, but their independent interests are irrelevant (yeah, I know that's hard to define). Parents of disabled children do not necessarily have the best interests of the child at heart any more than the average parent. Indeed, disabled children are particularly vulnerable to suffering at the hands of their parents.
  
• Doctors and other healthcare workers. It is just as ridiculous, in cases where a controversy has already been established, to say that it should be up to doctors to decide. Doctors know about medicine, about diagnoses, prognoses, potential complications and so on. A doctor who knows her patient well may have great insight into their best interests, but this is not something which comes as default with expertise about a medical case.
• Medical ethicists. These are people who have studied the moral philosophy of medicine and who attempt to wrangle out difficult cases using logic. In theory. They will usually know about precedents a case can be compared to, the law and government policy. However, it may be argued that because medical ethicists inevitably reflect the particular values of a society in their decision-making, including the prejudices a society may have.
  
• Disability Advocates/ Campaigners. These are people who have massive experience of the mechanisms of disability within healthcare systems and elsewhere. They are expert in the sort of mistakes people make, and their tragic consequences, when it comes to considering the best interests of disabled people. That having said, being disabled is no authority of the inner thoughts and preferences of any other disabled person, whatever similarities between their experiences.
  
• Judges. Unlike other parties, a judge who becomes involved in such a case is obliged to hear all points of view, consider the law in which he is expert and apply it accordingly. The law is supposed to reflect the values of society. It is a judge's responsibility to act without prejudice, but they're only human.

Too many cooks? Not when it comes to life and death decisions and major stuff like giving a medically unnecessary hysterectomy to a child who can neither give or withdraw her consent. Everyone who speaks on this matter has an imperfect perspective. No decision which effects a person who cannot speak for themselves is ever going to be simple. But we don't make better decisions by assuming that through the magic of parental love, mother must always know best.


* Some folks in the blogosphere have suggested that this action is partly motivated by fears that Katie may be more vulnerable to sexual abuse if she is allowed to experience 'normal' sexual development (one argument cited in the case of Ashley X), but I haven't seen any suggestion of this from the parties involved.

** There is currently a case in the European court, where a British woman is claiming she was discriminated against at work because of her son's impairment - now that is interesting.

Will nature make a man of me yet?

Next Saturday is my Mum's birthday and Rosemary and Alexander will be in Suffolk. Originally Rosie, Alex and I were planning to go to Felixstowe on Friday to visit two of our great aunts and talk about the family tree that Rosie has been working on.

I wanted to ask my great aunt Molly about her conjuring alter-ego, Professor Mollovitch since I have taken on the sacred mantel of transvestite-magician-auntie. So far I can do several card tricks quite well, only when I get to the stage where I ask, "Is this your card?" it generally isn't. I can read minds and levitate small vehicles though, so that's something. And I make a very convincing chap, as you can see. I mean, you may struggle to believe it, but that beard is actually false. No really, it is; I didn't grow it. Pretty impressive, eh?
Anyway, Friday's adventure is probably out for me. So instead this week's objective is to be well enough to go round my folks' house on my Mum's birthday. I also want to finish her birthday present which I have started making and I did fancy making birthday cake... but those are secondary objectives.

I have actually made a cake in recent months. Sometime in July, I made a Christmas cake. Well that's what you're supposed to do; make the cake half way through the year, then "feed" it with brandy. So far, about half the bottle of brandy has gone into the cake, so by December it's going to be a serious fire-hazard.

Oh is boring to be sick - it's not just the fact you are sick which is boring, but the fact there is so little else going on apart from being ill. Moan moan moan, whinge whinge whinge.

In other news, while she's down here next weekend, Rosie is attending her ten year high school reunion. On hearing this I said, "Yeah, but do you actually want to go to that?"

"Well, I think I should," she says, "especially as I'm organising it."

Oops!

All quiet on the Eastern Front

I've got computer problems on top of everything else, so I am attempting to project my words psychically onto Blogger, hoping that none of my peripheral banana mental activity slips through itch accidentally. Thank you for all your good wishes; they are very much appreciated. Things are simply bound to turn around soon, if they haven't already. Today is quite good as the constant impenetrable headache I've had for the last four or five days has suddenly vanished. Also I've finally got Away in the Manger out of my head.

My mental jukebox is prone to getting jammed when I am particularly unwell. And I mean jammed; it's not a question of having a song drifting in and out of your mind throughout an afternoon. A song gets stuck and plays more or less constantly for a number of days; I sleep and it accompanies my dreams, however irrelevant. Usually, this is a song I like, perhaps a song I have listened to many times over, but during this period it has been completely random songs which mean nothing to me and becoming annoying on the second repeat. I only know one verse of Away in the effing Manger. But today it's gone.

Another positive, if in retrospect, is that by not going to Southampton, we avoided the vomiting bug that befell my sister and her family. Meanwhile, very little is happening, but while I have been projecting this post a package from Maplin has arrived so if we have a good thunderstorm tonight, we may be able to bring the dearly departed computer back from the grave. Although we've done this before and it does tend to lose a bit more of its humanity after every resurrection.

In any case, still not up to much but I'm basically okay. Just waiting for a change.