Saturday, November 29, 2008

My name is

Alexander can now name most of his family and friends. He can cope with polysyllables; for example, there is a little boy at his childminders' who is known as Baby Luke and he can say that, no problem. His Grandad sounds very much like Gandalf but I think this may be a satirical point as opposed to mispronunciation.

But he cannot say my name. For the purposes of this post, you have to know that my off-line alias is Deborah or variations thereof. And to begin with, Alex appeared to make an asserted effort, calling me something like Dib-dab, which is close enough. I would be quite happy to be Auntie Dib-dab indefinitely.

Alexander performs a three point turnThen one day, about six weeks ago, Alexander decided to give up and call me Bum.

When he first came out with this, his mother corrected him.

“Bum bum bum bum bum!” Alex responded.

So I thought he was just messing about. Only Rosie and I had a chat about other things, and when she said goodbye and asked Alexander to do the same, he said, very tenderly, “Bye bye, Bum.”

Then the next time we spoke, when Rosie asked him to say hello to his favourite auntie, Alexander greeted me with, “'Ello Bum!”

Which I guess at least proves consistency. Once again, Rosie corrected him.

“Bum bum bum bum bum!” he insisted.

I did ask and no, he's not calling anyone else that - it is just me. And so it continued. But then last night, there was a change. When I was talking to him on the phone and I asked if he could say my name, he cried


I'm yet to decide whether this is an improvement.

Friday, November 21, 2008

In Search of Cheryl

On Wednesday, we visited a friend and on the way home popped into the supermarket. At the checkout, all the magazines spoke of a woman in great trouble. Her name is Cheryl. On every magazine cover, she was at some stage of emotional collapse;

Cheryl Breaks Down
Cheryl Is Humiliated
More Heartache for Cheryl
Cheryl says, “It's all over!”

I have no idea who Cheryl is. I don't have my finger on the cultural pulse, but I do know roughly what's happening in films, music and stuff. Yet the only famous Cheryl I can think of is Cheryl Baker who used to co-present Record Breakers in the 1980s and I don't think it could be her. I'm not even sure what the lady looks like, because the magazines seemed to have different women's faces on their covers. But Cheryl has my sympathy. She's obviously going through a rough patch. And she is clearly either very famous or there is nothing else to print just now.

But it also raised a question which often occurs to me. How could the life of any celebrity be so fascinating for you that you'd buy a magazine on the grounds of such headlines? I am wired much the same as the next person and whilst I don't buy any magazines or newspapers, my curiosity can be aroused. If I had some admiration for or interest in the enigmatic Cheryl, I could understand wanting to look inside having read headlines such as

Cheryl Reveals Her Dark Secret (I would want to know the secret)
Cheryl Wears An Incredible Hat (I would want to see the hat)
Cheryl Takes Off All Her Clothes (I'm human) or
Cheryl Spills the Beans on Nuclear Fission (I never fully understood the difference between fusion and fission)

But if Cheryl is merely breaking down, I already know what happened. I don't know why she broke down, but I imagine that if it were more exciting than her actual breaking down, they'd probably have referred to it in the headline. Something like Cheryl Breaks Down Over Odd Sock Shocker. The lack of detail suggests Cheryl might have broken down over nothing at all. Unless she is so very famous that her recent tragedy is such common knowledge and it doesn't need mention - just as we now see headlines referring to Strictly Come and know it has something to do with a television programme as opposed to a new kind of eco-friendly hair-styling product.

The last time I asked my question about appeal of dubious celebrity gossip, I was told that I couldn't understand because I was "middle class". As if it is the proletariat buying Heat with their benefit money, whilst I'm sat reading Lawn Magazine or Kumquat Monthly in the breakfast room.

If anyone does know who Cheryl is, or doesn't know and would like to make something up - or indeed would like to explain the difference between nuclear fusion and nuclear fission - you know where to click.

Tuesday, November 18, 2008

On Voluntary Euthanasia #2

That's enough frivolity for now, let's get back to matters of life and death!

The Right To Choose and The Obligation to Interfere

It never made sense for suicide to be a crime (although it was before the 1960s); a person's body does not belong to anyone other than its inhabitant so ultimately, one is free to do whatever one likes with it.Meanwhile, a person who is dead cannot answer for their actions, and the main concern with someone who has survived an attempt on their life is to keep them safe and help them feel better – an objective somewhat undermined by criminal prosecution.

But suicide is the only non-criminal activity I know of which we are allowed to use physical force to prevent. If you see someone about to jump off a bridge, you're allowed to tackle them, drag them away, knock them unconscious if necessary without being charged with assault. It's reasonable force, you understand; deadly force would be to defeat the point.

If you fail to prevent a suicide when it would be reasonable for you to do so, e.g. if you fail to phone an ambulance following an overdose or potentially fatal injury, then you risk being charged with manslaughter. Assisting suicide carries up to fourteen years in prison and even verbally encouraging suicide is a serious criminal offense. Meanwhile, if healthcare professionals believe you to be a serious risk to yourself, then they are allowed to detain and forcibly medicate you.

This does kind of make sense. What it means is that ultimately, you do have the freedom to die if you want to, but the rest of us are going to try and stop you. And the potential benefits of our interference greatly outweigh any harm we can do to you. If you are still alive, you still have the opportunity to choose. If you survive and go on to have a wonderful life, then what a glorious gift that is! If you still choose to die and go on to try again, then you haven't lost anything. But if we butt out, all will be lost in any case.

So it could be said that you have a right to die by your own hand and you certainly have a right to refuse medical treatment (or food, hydration etc.). But if you are not in need of life-sustaining treatment and you don't have the physical capacity to kill yourself, you're kind of stuck.

In most countries which have legalised euthanasia, it is exclusively about hastening an inevitable death. The Swiss example is pretty deplorable; assisted suicide is not a crime at all, so long as it is not done out of self-interest (e.g. you can't be paid). So for example, if your friend is unhappily gay, becomes suicidal about their sexuality and you happen to agree that it is better to be dead than gay, well you can help your friend shuffle off their deviant mortal coil. I think that lfe is worth a whole lot more than that.

And yet, I can't quite believe that a person must be condemned to be alive because an impairment stops them opting out. It's not a right, exactly - since we're talking about another person's (remarkable) participation, assisted suicide could never be guaranteed. Hmm, I don't think I'm going to get any further with that one.

But I completely reject the idea that we shouldn't comment on other people's decisions on this matter. I don't believe in harassing people or threatening them with the seventh circle of hell, but I do believe in trying to make the most fundamental decisions a person can make as informed as they possibly can be. We all have a responsibility to give one another the best shot possible.

The Last Resort

Most people who commit suicide have depression, which is a treatable (if not universally curable) condition. Meanwhile, very many people, including myself, have contemplated and/ or attempted suicide, failed and feel that the whole thing was a ridiculous mistake. Most people know someone who has succeeded and rarely it is anything but an unequivocal tragedy, a terrible waste and one of the most devastating kinds of bereavements for those left behind to come to terms with.

I don't believe that many people want death; what people want is change and it can seem that death is the only way to bring about that change. This is not an easil- corrected mistake; I spent about a year of my life thinking in this way, and it wasn't particularly irrational given my circumstances and my understanding of the world then. Because of illness, I could not have the sort of life that I had always wanted and expected, and while I had imagined myself to be quite open minded and flexible, it seemed that the doors had slammed shut on every other option. I had lost my future.

Meanwhile, I couldn't do any of the things I wanted to do. All the things I liked to do with my time had either been taken away from me or were massively disrupted by illness. All my friendships had been changed by my illness and at this point, I didn't really trust anyone any more – since I was so boring and inarticulate, I imagined the friends who stayed did so out of a sense of duty. I was living in a place I didn't want to live with people I didn't want to live with – which in turn I felt very guilty about.

I've often said that [...] saved my life, because if he hadn't come along, well I had a date and it was coming up very fast. Even so, it took much longer to learn that my life didn't need to have been like that - it wasn't just a question of “snapping out” of it or even a gradual recovery from depression – whilst I did get very depressed, none of the above was fantasy.

If I had died, it would have died because of an inflexible and unimaginative attitude towards education, work and the value of my existence, the stigma of chronic physical illness, the stigma of mental illness, my own disablist prejudice, self-disgust, inadequate pain management, unintentional familial pressure, careless drug prescription, inadequate options for housing, homophobia and living in Ipswich (it is a terribly depressing place). Not because of my physical and cognitive limitations.

It wasn't purely a change in my feelings which changed my mind, but different information. Feelings cannot be either legitimate or illegitimate, but you can have the wrong data. If every other option for improving a person's life and happiness has been totally and utterly exhausted before they decided to die, then it would be difficult to argue with that decision. But there is rarely any clue to that in the way these stories are reported.

Unintended Consequences.

Any change in the law is likely to effect only a small number of people directly, but disabled people are affected by the mere discussion. As it is, the lives of disabled people are not seen as on a par with those of non-disabled people. We are both pitied and regarded as a burden by very many people very much of the time. If society is able to forgive some disabled people for wishing to end their lives, will it be able to forgive the rest of us for wishing to live?

Almost all media stories about euthanasia ramp up the tragedy in ways that they could never get away with talking about disability in another other context. Generally it is pain which makes a condition unbearable, but instead these stories tend to focus on things like the level of personal care people need. Yesterday the BBC news website published an open letter from Lizz Carr to a chap called Noel Martin who wants out (and wrote back), concluding it with a video of the man getting his hair washed. As if this offers the other point of view; Carr says that life is worth living, but look, he needs someone to wash his hair for him!

However, I don't think a change in law could make society value us less. I certainly don't believe in any slippery slope where we begin find ourselves under social pressure to die - or that when disabled people are in despair, that those around us will agree that death is the answer. (Tayi points out in the comments to my first post on this subject that things might be different where there isn't socialised medicine, and illness is far more of an individual economic burden.)

I reckon that debates on euthanasia merely bring to the surface the stereotypes that people have always held - and then allow them to be contradicted. We're getting louder and more visible all the time; a fact demonstrated by the BBC publishing a bit of a debate between two disabled people as opposed to two non-disabled 'experts'. Meanwhile, people sneaking off to abroad to die and recently bereaved people risking criminal status is not doing anything for us at all, let alone what it is doing for the individuals who find themselves compromised in this way.

A small but significant proportion of disabled people will ultimately face a very slow and painful death. Some of us would be able to face that with less fear if we knew that we'd continue to have control of our lives, whatever happened to our bodies. I think the time has come for a change.

But I'm still not terribly happy about the subject!

Sunday, November 16, 2008

Party Dresses!

The thing about the dresses that come into the shops at this time of year is that, even if you hate everything that's fashionable in any given season, these dresses are always lovely. It's always the most gorgeous fabrics; velvet, satin, chiffon and tafeeta and despite the permanent prominence of black, those that come in colour are usually very nice deep colours. And they're always the nicest shapes, effectively gift-wrapping that most beautiful form in all of nature, the adult woman. Well, it is true.

I guess this is more about aesthetics (or possibly lechery) than some girly thing about dressing up; I have never been invited to anywhere where I might require a dress anything like these. If I were, I would find more fault with them. For one thing, I am an odd shape and don't usually fit into dresses. They are all incredibly skimpy given that it's winter, this is Britain and women tend to feel the cold more than. None of the dresses are fair trade or made from recycled materials and despite their expense they are the sort of thing which one wears very rarely, perhaps only once – and needs shoes and things to match, and don't get me started on the sheer hell that is shoe-shopping. If I were in the market, I'd probably make one myself. Out of an old sack.

In fact, I'm not sure quite who it is who wears the dresses that come into the shops about now. Most women never need a dress like this - I reckon that the sort of Christmas parties where women were posh frocks only happen in movies or perhaps for Office Parties if you worked in a really swanky office where they had mahogany desks and lead crystal mousemats or something. British high schools have started having “proms” in the last few years, but I think that happens in the summer.

My sister is the one person I know who owns these sorts of dresses, but then she goes to lots of weird weddings (you know, the sort that don't have a pirate theme) and does lots of concerts in orchestras where the chaps dress up like penguins – I don't think the audiences dress up so much. However, the one time I did go shopping for dresses with her was incredible; at one shop they gave me a cup of coffee while she tried something on. Free! Although at the end of that trip, we found the perfect item, full length, bright red and extremely flouncy, for £5 in a charity shop.

Anyway, since my futile and frankly slightly shameful window-shopping is usually conducted at home by myself, and since there is a very small chance that someone reading this might want to buy a dress this year, I thought I should share with you the top three dresses that I have seen this year.

3. This one I like because it is a great curvy shape (too many of these dresses require the wearer to be stick-thin). It is also almost black (it's described as graphite) and therefore fairly safe, also sparkly so one isn't a dark mass from the neck down. And the sparkly balance is just right; a lot of sequined dresses may be dazzling to behold, but make a person look like they put on their chainmail but forgot the suit of armour. It is from John Lewis and is called an Elise dress, like the car or whoever Beethoven wrote that tune für...

2. This is my second favourite mostly because it is a very nice colour and it is has a very pretty neckline (I'd be such a good fashion writer, all so very very nice). Also it is called a Boudicea Dress for reasons I can barely fathom, and I like the idea of a woman who was glamorous enough to wear such a dress turning up at her party in a chariot. It is from Monsoon.

1. This is my most favourite, because despite everything I said, I guess I imagine this might suit me if my fairy godmother showed up and it did, by some bizarre manufacturing error, fit. It is a lovely purply shade of red, it's got two textures in it and I don't know, it is sensible enough such that I probably could find some excuse to wear it between now and the End of Days. It is called a Matt & Shine dress and is from Marks & Spencers. It's also the cheapest out of these at £55. So I think practicality won the day despite myself.

probably have the biggest range of dresses, including an entire section of red ones. Also, if you are a funny shape and did want a party dress, you can "design" one and get one made in the UK through somewhere like StyleShake which I've never used but looks like a great idea.

I don't think shops will mind me pinching pictures for the purposes of admiration, but I shall merely link to what is by far the ugliest party dress I have seen this winter. It is leather. It is gold. It is pretty much without shape. And it is £175. Any positives? Well, I guess could easily be wiped clean...

Friday, November 14, 2008

On Voluntary Euthanasia #1

There are two things on my mind at the moment; euthanasia and party dresses. I got to writing about euthanasia and it got so long it will become two posts, but I'll do the one about party dress in between. If only I could post a cake recipe and some advice on dieting, this could be the blog equivalent of daytime TV!

Truth is that I long ago established that suicide might be one way to go. Much later on, if things get really grim. It is a rather morbid thought for someone who is neither depressed nor in any imminent physical danger, but it means I don't worry too much about future some worst-case scenario in which everything is suffering and pain. Might never happen, but if it does, I shan't be stuck here.

Meanwhile, I believe people should be allowed to do whatever they like with their bodies as long as they don't harm other people. However, the debate on voluntary euthanasia has always troubled me. It is one of those debates where I find myself disagreeing with everyone, so I am going to try and unpick this for myself.

We'll start with something relatively straightforward.

The Sanctity of Life

Human life is very precious, but I have no God to make it sacred. Death may be final, but it is not the worst thing that can happen to a person – which is a relief, since it's going to happen to everyone of us. Yes, maybe even you, should you accidentally eat some garlic or if someone set your alarm clock to go off before dusk. Meanwhile, the value of a life is all about quality, not the number of years, months, weeks or days that it can be sustained. Life-sustaining treatment is not always in an individual's best interests. Nor is it always reasonable; in the UK it is too high to effect many of us, but there is a limit on the resources that can be dedicated to maintaining any given pulse. I don't believe in life at any cost.

What's more, we bring life to a premature close all the time when the dose for effective pain-relief during the end stages of terminal illness becomes deadly. We don't take years away, but maybe a few days of agony here and there. An American friend told me of her childhood preacher who objected to diamorphine on the grounds that dying people could no longer feel the flames of hell licking at their feet and might miss their final opportunity to repent. But that's the only objection I've ever heard of.

If we are happy with this, it seems that there seems no fundamental problem with ending life. There is some argument about a big difference when killing is not the primary intention, but clearly it is regarded as an acceptable side-effect in these very extreme circumstances. It seems to me that in the case of someone who is dying and in great physical suffering but wants to shorten their suffering (and thereby, their life) by months or years, the only difference is one of timescale.

However, not everyone who seeks euthanasia is on their way out.

Manner of death vs. quality of life

There have been two news stories about voluntary euthanasia in the last month. I don't wish to write about individual cases, since these are ordinary people's lives and deaths, but the contrast between them is very important.

One story is about a lady with the sort of MS that can kill you, who says she would like to go on forever but she was seeking reassurances that, should the situation arise, her husband could travel to an euthanasia clinic abroad and not face prosecution on his return. Her case has failed. The other story is about a young man whose parents took him to Switzerland to undergo assisted suicide. This chap was in his early twenties and had been tetraplegic (quadraplegic) for just eighteen months. His parents supported and facilitated his choice in order to relieve their son of what they considered a second class existence. It is unclear as to whether they will be prosecuted.

These two stories demonstrate a big problem for me because one case seems totally reasonable - I instinctively wish that the lady didn't have to travel abroad to do what she wants to do - and the other makes me feel very uncomfortable indeed. One is about the kind of death a person hopes to have, the other is a rejection of a certain sort of life.

The life of someone in the latter stages of a terminal condition is as precious as anyone else's, but having decided that they want to die, it is extremely unlikely that they would change their mind should they survive. There is unlikely to be the time to develop a completely new perspective. The things which might make life pleasurable are only likely to decrease as the things which make life seem intolerable increase.

Someone whose life is not in any danger – especially someone whose condition is stable and might even improve – has a lot more to lose. I don't think there are any statistics on this, but I wouldn't be at all surprised if most people with any kind of acquired impairment, an injury or chronic illness, experience a period of despair. Similarly, people experiencing a nasty divorce, sudden bereavement, a terrible assault, financial ruin, some great personal humiliation or other, are likely to have a spell when they can't see how they could ever be happy again.

But they will be. When people say, “If I went through what you've been through, I would have killed myself,” the chances are that they wouldn't. Most disabled people were once non-disabled and almost all of us survived the change. So why should we condone someone's pessimism just because they have a physical impairment? How is a spinal cord injury different from a broken heart or bankruptcy?

I suppose there are three differences. The first is that we kind of think of non-medical disasters as recoverable from. One's heart is broken, it will heal with time, whereas physical symptoms won't go away. I'm not entirely happy with this. Physical symptoms can often be improved, and most certainly the impact of those symptoms on one's quality of life can be changed completely. Not always, not necessarily, but very very often.

The second difference is that one acquires impairment in a culture which completely accepts the idea that we live a second-class existence. If the whole world believes your life must be rubbish, then your own suicidal feelings on the matter are likely to seem completely reasonable.

But perhaps the most pertinent difference is that something like tetraplegia and certain other conditions, a person who is desperately unhappy about there situation can't escape it without help - or without a terribly painful and degrading death like starvation. We encourage one another to stick it out through the bad times, but there is no law against suicide. Which brings us onto the matter of Human Rights.

Which I shall write about after I've written about party-dresses. I bet you can't wait!

Wednesday, November 05, 2008

Visiting Hours

The great things about visiting other people in hospital as a wheelchair user include the fact that everywhere is flat, there are plenty of spacious lifts and nobody bats an eyelid at your presence. The bad things about visiting other people in hospital are much the same for everyone, and thus are bound to outweigh the good.

My Gran took a bad fall on Friday night. She's not that badly hurt; nothing was broken, but she fell on her face hard enough to knock herself out, she is rather confused and terribly distressed about the whole thing. She always been prone to confusion and depression, but following this concussion she apparently found out that she is much older than she thought she was (that is, how old she thought she was when she came round). She thought she was sixty-three, and is terribly upset to learn that she is fact eighty-two. She says she has all manner of wrinkles that she never had before. A curious concern for someone whose face is currently every colour of the rainbow.

She hasn't lost nineteen years of her life; it's not that she didn't recognise me from my eight year-old self or she thought my Grandad was still alive or anything like that. But it has thrown her. She is also very frightened about what happens next; she is frightened of going home and having another fall, she is frightened of having to go into residential care. It's impossible to reassure her and just now I feel very very sorry for her.

However, my mother made me feel very useful. I helped, apparently, with both comforting my Gran and given pertinent information to the social worker. I'm not sure whether I was at all useful or not, but it was a novel feeling to even think I might be.

Gran was, of course, completely and utterly oblivious to the US presidential election. But thank you very much, my American cousins for all you did for the world on Tuesday. Passing by the US Airbase* today, the stars and stripes took on a certain nobility that it may have lacked over recent years.

Oh and Happy Bonfire Night! Of course, the failed terrorist atrocities on 5/11 back in 1605 were used as an excuse for wholesale percecution of Catholics and religious non-conformists of all ilks. One such group of Puritans suffered so much that, following a detour to the Netherlands, they got on a ship called the Mayflower and sailed away in that direction [points West]. You see, everything is connected!

* In fairness, the Americans don't fly the flag at their airbase because it's really Ministry of Defence land; the flag was flying outside a nearby car shop where the US service personnel can buy tax-free gas-guzzling vehicles (the sort with wheels as big as a house) to fill with um, tax-free petrol, but we'll put that to one side for today.