Ism Through a Prism

For Vegankid's Blog Against Sexism Day.

Both sexism and disablism are based on the same faulty mechanism; the confusion between biological fact and social construct. Sex is a fact. Impairment is a fact. But gender and disability are both garments that society has sewn for us. Both constitute a vast set of assumptions and expectations based on a relatively superficial matter, whether it is your particular combination of X and Y chromosomes, or your capacity to walk, see, hear etc as judged against a fictional norm.

The victims of sexism and disablism have also suffered far less from any kind of violent oppression as from the assumption that other people know what is best for us. Other people know what is best for our bodies, even what is best for our souls, about to how and to what extent we should be educated. Other people know how best we might best spend our time on Earth. We are rarely hated or feared until we step out of line, but such lines, subtle and unspoken as they are (now more than ever), are our subjugation.

Impairment often poses a direct challenge to gender identity and thus sexism increases the burden of disablism for both men and women. I recall a discussion among a group of people with my particular condition where the question arose as to whether men or women suffered most severely, in social terms, from having this illness. The men argued that the stigma of financial dependence and unemployment was far greater for them. That fatigue and enforced inactivity was emasculating; they were expected to be strong and active, not weak and passive.

Chronic pain and loss were also very difficult to deal with as a man. Men were allowed to show their feelings, but the sanctioned releases were exhausting; you go to a football match, stand and shout for ninety minutes, you participate in sport to get it out of your system or you flood your system with alcohol or recreational drugs. None of which does a great deal of harm if you are in otherwise good health and you just need a single discharge of emotion.

When your life has undergone significant change and you are suffering on a daily basis, you need to talk about it. The men felt that not only did they have difficulty with this, but their male friends tended to drop off very quickly when confronted with the new situation. It wasn't that the disabled men felt that didn't have the words or that their friends didn't have the capacity to listen, but the culture had made both parties feel entirely compromised by the prospect of any discussion. That is was going soft; giving up a bit of their masculinity.

The women argued that whilst they suffered from lack of sympathy from others over their unemployment – as if it just didn’t matter – there was so much other work that they were expected to do no matter what. This was especially the case when they had children; friends, relatives and others would be vocal in their disapproval if it wasn’t Mummy picking the child up from school, if it wasn’t Mummy cooking the dinner or if poor useless Daddy had to flail about ironing his own shirts. As if motherly and marital love consisted of a set of practical tasks and to decline from these tasks meant a failure as a woman.

Women also felt that their emotional response to illness was far more likely to receive a medical label and indeed, that the very physical nature of their condition was likely to be questioned if they ever came across as even slightly hysterical. This certainly seemed to be the case; out of the men who had gone through lengthy diagnostic processes, there were far more physical tests and scans than with their female counterparts, who seemed to need to demonstrate perfect mental health before any physical investigation would take place.

I could go on and this was just one group of people who had a particular condition. However, there is a theme running through these experiences which I think must apply to most conditions and impairments; being disabled means that you are regarded as a little less of a man or a little less of a woman.

Egalitarianism would seek to reduce the impact of rigid gender constructs on people’s lives, so this might not seem such a bad thing. Unfortunately, the effects of being a little less of a man or a woman in a sexist society is not to free you from the constraints of gender, but to reduce your value as an individual. Gender remains so important in our lives that if you do not fulfil your assigned gender role, you are a little less of a person.

Of course, disabled people are thought of as being a little less in many and various ways, but our compromised gender identity is a major contributing factor.

It is therefore imperative that disabled people are active in the fight against sexism, not just because we are right-on liberals who believe in fair play, but because sexism is part of our problem.

As long as we have assumptions and expectations about our roles, desires, strengths and weaknesses placed on us because of a physical and biological status that we all have (i.e maleness or femaleness), an altered physical or biological status (i.e impairment) is going to impact on those assumptions and expectations. And thus people with impairments will continue to be treated differently because of them.

Does that make any sense to anyone?

A is for Antidisestablishmentarianism

I spoke to Rosie last night, who impressed with the as yet unnamed pirate, has employed my services (or at least submitted to my pleas) to make the alphabet cards for Baby Tinker’s nursery. Rosie and Adrian are currently insisting that the child is going to be called “Kiwi Bob Snottit” for reasons known only to themselves.

Rosie has made her first purchase for Tinker. She has been very good, despite being generally a bit of a girl and taking great pleasure in shopping. And I am very pleased to report that this purchase consisted of ten Ladybird books, including Treasure Island, Oliver Twist, Alice in Wonderland and The Three Musketeers. Great stuff.

“Of course, the baby will have books for cousins,” I say.

“What?” says Rosie.

“Baby Kiwi,” I say (you have to indulge her), “He or she will have books for cousins.”

“What do you mean?” says Rosie.

“Books. It’s a metaphor. One is coming into the world as we speak.”

“You’re giving birth to a metaphor?”

“No, a book.”

“Eek! Is it a hardback or a paperback?”

Rosie does seem very confused at this stage of pregnancy; she stated that [...] was an only child who grew up in Barnsley. She has known him for almost seven years. Mind you, when I said that he had lived in Burnley at one point, she declared that this was the same thing; the two places begin with B and they are both Up North.

We had much fun discussing inappropriate words for every letter in this alphabet I am going to do – we managed to come up with one almost entirely made up of words for bottoms and digestive processes, only most of the pictures would be similar.

In all seriousness, it is a challenge. You have to think of appropriate words for each letter of the alphabet where

(a) a child will be able to recognise the object early on (why give the child the concept of yacht which it must differentiate from boat?)

(b) a child will be able to pronounce the word fairly early on

(c) a child will be able to read the word as soon as it begins to read (whilst elephant makes for a nice picture, why burden a child with ph before it has mastered its single letter sounds?)

But also, one has to consider;

(d) the relationship between the letter, the shape, the colour and the sound of the word and any sound association between the letter and the object.

For example, snake is a great word because you can make the snake curl into the shape of the letter S. You can also make a snake as colourful as you like. And the snake hisses – it makes an S sound. Fantastic. Similarly whale can have lots of waves in the shape of the (more rounded) letter W. And whales make a “Wibble!” sound, or at least it would be good if they did, so why not pretend?

However, some letters are absolute bastards. Sometimes I wonder why we have the letter X in our alphabet at all. You can only do X-Ray where an X sounds like an X. This will make for an amusing picture, but it is rather advanced concept.

You can tell that I am taking the duties of auntihood seriously. I have even been revising Piagetian Theory. Anyway, they're going to have a scan in a few weeks, so hopefully you'll be able see a picture of The Science Project - I mean Tinker- very shortly.

Competition - Name That Pirate!

Naturally, the news of my forthcoming increased auntihood has resulted in a flurry of industry. The first thing was to paint this piggy-bank. I am also very chuffed the dolly I have made, as I have no experience of toy-making, only ever sew in order to mend things and I didn't have a pattern or anything. Despite all this, it turned out quite well. Now all my dolly needs is a name.

I meant for dolly's gender to remain indeterminate, as is Baby Tinker's gender at this time (hopefully there will be a scan soon and I will show you, like it or not). However, my instinct is that this is a gentleman-dolly so I shall refer to it in the masculine.

The dolly is a pirate on account of the fact that his hair went hideously wrong. I had no idea how to give a dolly hair so I sewed nine metres of black ribbon onto the top of his head. I then realised he was best wearing a bandanna at most times.

So the dolly is a pirate and spends his working day plundering the high seas. For this he wears denim dungarees which are so incredibly funky that I would probably make myself a pair if I had more fabric.

The dolly is disabled and can't stand up straight. I may make a wheelchair for him later on, but I am anticipating baby Tinker to be very clumsy and inclined to eat everything during his or her first years of life and would therefore damage such a thing.

After a hard day's work, the dolly clocks off, changes into casual dress and spends some quality time with his pet, the Big Scary Kitten. Despite the violence and villainy essential to his day job, the dolly has a warm heart and a great love of animals. He also likes listening to music. He is very keen on Depeche Mode, having himself been described as the Black Martin Gore.

Strangely enough, "Is it black?" was the first question my mother asked when I told her about the dolly. I explained that the fabric I was using was kind of tea-coloured if that was anything to go by.

"Trust you to make a politically correct doll!" my mother declared. "Is it gay?"

"It is a dolly for the baby," I explained. "It is ambiguous."

The word ambiguous sent my mother into a fit of inexplicable giggles, so that was the end of the conversation. But just to reassure my mother, who may worry about such things, here is the dolly spending an evening with the lads down at the local nightclub The Dolly House.

Here the dolly meets his best mates, Tinky Winky and Tortoise. After some nice tasty seafood, these chaps like nothing better than to dance the night away, which is a precarious business when you have no skeleton.

At the end of a long day, plundering the high seas, playing with his cat, and getting very drunk in the nightclub, the dolly collapses in a drunken stupor on the floor (he's a real-ale pirate).

So now it is over to you; what is the dolly's name? There are no prizes except for the knowledge that a small, as yet unborn, person will have the dolly that you named as his or her most favourite treasured toy (perhaps). Hmm, I might think of a prize of some sort.

I think the best way is if you enter the competition by leaving a comment with your suggestion below. I know that means everyone gets to see your idea, but I think it may be more fun that way. I'll tell you who won next Sunday (12th March 2006).

And before you ask, yes, a new digital camera is high on the list of gadgets to be purchased when finances allow.

Don't people just make you sick?

Inspired by Charles Dawson and his allegedly Distasteful Subject.

Recent generations have had a kind of cultural mysophobia instilled in us from an early age. AIDS emerged within six months of my birth and was always in my consciousness; eight year old Sally and I decided not to make an oath of our friendship in blood in case one of us was infected. I do not know quite how many diseases I was vaccinated against and indeed, my health was excellent as a child.

On diagnosis of the condition I developed at fifteen, I was informed that I had simply not had enough bugs and diseases and my immune system had now collapsed, perhaps permanently, in the face of its first significant challenge.

Now personally, I would prefer that people like me became disabled than mothers and fathers had to face the deaths of their infant children to preventable diseases – if indeed there is a connection between my pathetic immune system (and the increasing rate of asthma and other allergies) and vaccination. My point is that I am not naïve about the potential effects of infection.

One of the chief candidates was Epstein-Barr which causes Glandular Fever or Mono.

Meet Epstein-Barr, also know as the kissing disease, because that’s one way of contracting it and most people who get Glandular Fever are adolescents who do a lot of that sort of thing. With tongues. Scary stuff, eh? You could be ill for months and if you are unlucky, you could end up like me. Don’t kiss any icky boys or slimy girls and you’ll be safe, right?

Well no. In the developing world, there is an almost 100% infection rate among babies and in the UK about eighty percent of us carry the antibodies; evidence that at some point we were infected and are now immune. Most of us didn’t get sick at all, however many tonsils we tickled.

Similarly; herpes. Eek! Herpes! Seventy percent of us have facial herpes that causes coldsores. About one in five of us have the genital version of the virus. That means that a state of herpes infection is actually normal; fortunately most of us are oblivious to the fact because our immune systems tuck these things out of sight and most of us don’t experience (or at least don’t notice) symptoms.

Just recently in the news there was the suggestion that students should be wary of the number of partners they kissed because of the heightened risk of Meningitis. Meningitis is serious, it can kill and otherwise cause severe lifelong impairment. Yet one in ten of us carry the bacteria involved. Without behaving abnormally, there is very little you can do to guarantee your health and therefore, your life.

People do make you sick. Human contact is a bloody dangerous business. And as I say, we are riddled with potentially problematic, even potentially deadly organisms who largely manage to coexist with us. Some of them even benefit us. It is just the way the world is.

So, The Goldfish Guide To Avoiding Sickness From Infectious Diseases

• Hand-washing and food hygiene is all essential. It is very easy to make oneself very ill with the toxins your body has already disposed off, so to speak, as well as bacteria in meat and eggs which is destroyed with cooking. That stuff has to be taken seriously.

• There is no excuse not to use a condom. They are an effective form of contraceptive and protection from at least the ew nasty diseases. When you don’t want to use a condom, and either party has slept with anyone else ever, get screened. If you are grown-up enough to have sex, you are grown-up enough to feel no shame in this. The vast majority of STIs cause very little harm unless they go untreated.

• If you have an infectious disease such as the flu or a sickness bug, stay away from other people until it has run its course. Remember that your sniffle could do a lot more harm to someone with a vulnerable immune system, who may be a colleague, or someone next to you on the bus – apart from the fact that making your colleagues sick will double your workload when they’re off work in a few days time.

• Have a good idea about the symptoms of serious infectious diseases like Meningitis so that on the rare occasions that it does crop up (and you don’t need a SU card to get sick), the damage can be kept to an absolute minimum.

• Look after your immune system by exercising, eating healthily, giving up smoking but most essentially, getting plenty of human contact. Then at least if you do catch the dreaded lurgy, your immune system will be boosted by all the love, laughter, support and stress-relief provided by whichever bastard infected you.
  

At this point I must remind you of the wonderful Giant Microbes website first pointed out by Gimpy Mumpy, where you can contract various diseases, including Syphilis (right), for a mere £6.25.

A competitive price around our way.

Playing the mind guerrilla

Disclaimer: I am a bit odd just now. I seem to have a wound somewhere which is bleeding words. I thought better of this post because I am not sure it came out as I intended, but I hate to pull something which will have been read already. I could not write explicitly about what I wanted to write about, but that last bit is really about an individual as opposed to people in general. Lots of words, not very articulate today.

The reason I decided to study psychology was that somebody said that I would save lives. He said I had a gift for understanding people and if I trained to be a clinical psychologist then within ten years there would be at least fifty people walking the Earth who wouldn’t be alive if I hadn’t take this course. The subject had always interested me, Kant was getting up my nose and then this. It happened to come from someone I greatly respected and duty-bound, I accepted his counsel.

The reason I stopped studying psychology was that I got too ill to carry on, even with the uber-flexible regime of the Open University. That was the crux of it. But there was an inevitable degree of disillusionment with both myself and the subject.

Psychology is a very young science, conceived when philosophy and medicine got drunk at a Christmas party. Right now, one may think of psychology as being in its adolescence and thus full of controversy and contradiction. I’m not talking about that slight inconsistency between quantum mechanics and particle theory which we are all so familiar with in physics, but a far more profound quagmire, with various theories being presented as the complete answer when really they are only a small part of the question. Different learned gentlemen will tell you that it is all about our mothers, it is all about where we sit between neurosis and psychosis, it is all about our repressed libidos.

As a theoretical science, this is confusing enough. As a branch of medicine*, it is an intimidating minefield. It is as if you have a tummy ache and you know that if you go to one doctor she will propose a radical change in diet, another doctor will prescribe a course of tablets and another will propose major surgery. Still another will suggest it has nothing to do with your tummy and will diagnose an ingrowing toenail. Unsurprisingly, there are a lot of sick people who are not getting any better, and still others who have acquired further complications along the way. However, this is the best we can do just now.

All this is further complicated by the fact that we all want to maximise the happiness in our lives and are tempted by glossy books, seminars and cult-like arrangements which propose Instant Confidence or that It's Not How Good You Are, It's How Good You Want To Be. On Radio 4’s Old Harry’s Game (currently being repeated on BBC 7), Satan makes mischief in the world of men by publishing the self-help book, You’re Really Special and Everyone Else is A Git.

So anyway, studying psychology is like studying physics before Newton. A great deal is known. A great deal can be speculated upon. But how it all fits together is anyone’s guess. Meanwhile, a significant number of people seek power and money purporting to have discovered the secret of happiness **.

The second great disillusionment was with myself. I never actually believed I had a gift for understanding people, only that I am more interested in them than many other people so I pay a more attention to what they say and do and so see patterns that other people don’t always see. Even so, you have always baffled me. Yes, you. But the enigma is not without its charm.

I certainly don’t have a gift for dealing with people. How could I? I have extraordinarily little experience and bumble through all my human interactions. I can be incredibly clumsy with people and whilst this would improve with practice, I think perhaps the damage is done; I shall never have the extreme tact and sensitivity necessary for dealing with people in extreme distress.

However, the greatest realisation was that I am not a very sympathetic person.

It seems that there is a great contradiction in our attitudes towards mental health in our culture. On the one hand, we want to believe that those with mental ill health are simply lacking in moral fibre and just need to pull themselves together. This is, of course, nonsense. With both physical and mental illness, an individual’s attitudes and behaviour may contribute much to their prognosis, management and rehabilitation, but nobody can simply decide to get better.

On the other hand, our society wants to imagine that some people with mental ill health are completely out of control and not responsible for their own actions. This can lead to very paternalistic, even draconian treatment; people must be looked after and coerced into the correct course of action. But it can also be incredibly indulgent.

If you live with or care for someone with physical or mental ill health, you are likely to see some unpleasant sights from time to time. I think a good comparison can be found between watching the manifestations of mental ill health and watching a loved-one in a fit of vomiting; it is not at all pretty, it is makes you feel sick yourself and at the same time you can see that this person is suffering and there’s little you can do but be on hand and help clear things up afterwards.

But nobody has an excuse to be an arsehole. Nobody has an excuse to vomit on you and walk away without apology. And when a person really doesn’t have a choice about it, if they are in a state of genuine diminished responsibility then the situation requires outside intervention. When a child misbehaves, one may quite rightly think, “This person cannot fully understand the consequences of their actions.” However one doesn’t then sit by and do nothing while the child sets fire to the nursery.

Yet I hear that often; they can’t help it because they are ill. We should be kind to them. We should submit to whatever abuse they dole out. Well, I cannot buy it, mostly because I have known enough people in extreme states of mental distress who somehow manage to be reasonably decent human beings, at least towards other people if not towards themselves.

Hmm, yeah I know. When one cannot be explicit, it is difficult to conclude with the revelation which prompted one to write. Anyway, unlike psychologists, writers of fiction don't need to be sympathetic, just empathetic, which is a different thing entirely, so we are all better off for both the illness that stopped me in my tracks and my disillusionment.


* In case anyone is confused, the practical difference between psychology and psychiatry is that your psychiatrist has a medical degree, can therefore prescribe drugs and thus tends to deal with a different group of conditions – or as part of a team, the more clinical aspects of a problem. Someone once said that a psychiatrist is concerned with the brain, whereas a psychologist is concerned with the mind. In fact both are concerned with the brain and the mind, but it is perhaps a helpful generalisation.

** Despite everything, I was a brilliant student and did discover the Secret of Happiness during my studies but I will save that for another day.

Scary Things #3 - Purple Haze all in my... head? eyes? I dunno

So the other night I woke up and saw a purple face at the window. I was startled, but it wasn’t that scary. For one thing, we are on the first floor and anyway the face was between the curtains and myself. And purple. Really quite bright purple as if it was emitting light.

Like I say, I was startled but I was thinking, “That isn’t really here.”

I do, after all, have some experience with things that aren't there. But it didn’t go away when I thought this. It just kind of hovered there. It was smiling at me. I wasn’t smiling back.

You know when you have been looking towards a light, you turn the light off and you see dots in the darkness? Well it made me think of that a bit. Except it was quite a vivid face. And there was no light in the room. There is the clock which projects the time onto the wall. But that’s red light was much dimmer than this.

My next theory (all the time there is this purple face staring at me) was that what I was actually seeing was dust or something on the surface of my eyeballs. You know sometimes when your eyes are half-open you focus on that stuff, like little threads and bubbles floating about? I was then making it into a face in the same way that some lady thought she saw the Virgin Mary on a toasted sandwich.

However, I was becoming increasing uneasy at this thing watching me, so I closed my eyes and lay on my side for a bit. I kept my eyes shut for some moments and when I looked up again it was gone. I then got up and went to the loo.

The next day, I tried research about the nature of light and the anatomy of the eye, to work out how I could be perceiving light on the surface of my eyeball in order to imagine this face. It was so bright. Not like the light filled the room or anything silly like that, but as bright as a cathode ray tube or something like this. However, I am no physicist and couldn’t work it out from anything I read.

Then it occurred to me that the face had appeared directly above the whimpering floorboard. Since moving the furniture about we have started needing to walk about on a floorboard which doesn't creak but whimpers under foot. Parts of our building are over two hundred years old, back in the day where Whitby thrived on illegal activity and this was, we believe, an Inn.

So now I am thinking there is probably some treasure (or preferably a map to some treasure - more exciting) buried under the whimpering floorboard and that face, which was undoubtedly a pirate, appeared to guide me to it. He or she was probably known as "The purple pirate" or "The violet villain" on account of the fact that... he or she wore a lot of purple?

Of course I don't actually think that, at least I don't actually believe it, but I think that, because my imagination will skip, hop, leap and jump to the most ridiculous conclusion in the absence of a neat explanation.

Then last night when I was in bed quite a while before [...] and he came in and sat down on the bed, presumably to get undressed. Only when I turned over, there was nobody there.

Scary Things #2 - The Pro-Active Patient

I am actually getting some work done in between all this nonsense. Hard to believe, but true. You see I am getting better and during this last week something really significant may have happened.

I have dropped a dose of Tramadol.

I just thought that I could do without the last dose of the four I take every day, especially if I spaced the daytime doses out a little. It is taking me longer to get to sleep at night, but not because I am in so much pain. Tramadol has narcotic properties so I guess I am missing my bedtime fix.

There are many reasons why this is exciting. Most notably, this is the first improvement in my pain for well over a year. I’m trying to keep it in proportion because it has only been a week or so, but muscles are feeling stronger and the pain is returning to something like its original pattern. This is where my muscles are never comfortable, but the really intense pain – like acid under my skin - only comes on during and directly after exercise (when I say exercise, I mean walking between rooms). Previously it was just all the time, but exercise would worsen things and a slight exertion would have me chewing my legs off.

The pain had got progressively worse and I felt that the next probable event was when my system became so used to the Trammies that they were no longer effective. I don’t know quite what would have come next, but Tramadol is a dream drug for me and my constant fear is that sooner or later I will be on morphine. I don’t want to go there. I know it is just a name of a drug, but that mere name fills me with abject terror for all sorts of reasons. In my more desperate moments I have seen my progression onto morphine as the point at which I would have to opt out. I know, I never pretended I was brave.

However, that’s not the direction things are going at the moment, so why is this a scary thing?

It is scary because something happened like it ought to happen, for the first time in ages. I relapsed, I was forced to rest and this rest has actually paid off. That is how it is supposed to happen, according to the doctors and the books. Yet I had begun to disbelieve in any kind of pattern which involved a degree of recovery; I can make a list as long as your arm of things which I know cause deterioration. But recovery? I have done all the right things and it has made little difference.

Until now. Maybe. Possibly. And suddenly I am faced with a tremendous responsibility. I cannot let this slip away. I have to keep my muscles strong, and get them as strong as possible but I must not push them too far. I must look after my immune system and make my way out of the winter without another challenging virus. I must be as kind as possible to my digestive system which keeps threatening to give up the ghost. I must pace myself and not get too stressed about anything.

Really I ought to be keeping an activity diary of every bloody thing I do and eat in a day, with a score for my progress. I ought to get a pedometer or something so I know how far I am walking in a day. Really I ought to be dedicating every last drop of energy to this new ray of hope, reading the books again, cutting out all caffeine, alcohol and refined carbohydrate, eating organic and standing on my head a lot. If I become a total control freak at this stage, I could be walking to the bus-stop by the end of the year.

That is why it is scary. And it’s only been a week.

Still, good news, good news.