Scary Things #1 - Members of my own species

I ought to be getting out and about now I am doing better, but the prospect terrifies me. Last time I went out in my wheelchair was sometime around the end of August, perhaps the beginning of September and it wasn’t fun. I managed to skid into the road twice. I am nervous because my energy patterns are still wavering so I may suddenly feel extremely tired in the centre of town.

However, the big thing is that I am just scared of the people. This is very hard to explain without sounding seriously nuts. And it really isn’t very serious. Nuts it may be.

People are quite terrifying. They are full of expectations. They demand interaction. Yeah, I realise this is me who complained about unsociable Londoners, but when you are genuinely out of practice, you forget all this and it comes as an almighty shock to the system.

I do love people. I love to watch them and listen to their conversations, to snippets of their lives. This is part of the reason I love the blogsphere so much; whatever people write and to whatever standard, they reveal a little bit of themselves, a little bit of their story.

When I go out, I suppose I expect to remain invisible. I am invisible most of the time. I look out the window and watch people, but nobody sees me. I talk on the phone but I don’t have to actually smile and nod when someone is boring me. I read books and browse the Internet but nobody knows that I am even reading their words, let alone how I am reacting to them.

And it used to be that I could stay invisible, or at least be translucent. I can have a very ordinary appearance if I choose; I am neither pretty nor ugly, neither fat nor thin. I am pale but not at all interesting and my hair is naturally the colour of dried mud. If I chose the right clothes, I can disappear completely out of sight. Poof! Vanished.

But the wheelchair. The wheelchair means that the moment I get out the front door, someone in the sky turns a spotlight on me and lights my way around town. Everybody notices the expression on my face and my posture. Everybody listens very carefully to the tone of my voice and my exact choice of words. Everybody notices the slightest mistake I make in the control of my wheelchair. Everybody notices what I buy in shops.

At least so goes my delusion. I know it is a delusion.

Most people pay me no more attention than they would anyone else. I think my presence registers with people such that they recognise me and are more like to say hello to me than to someone less memorable. I am not at all ungrateful for this fact; I know that if I did run into serious trouble, then I would have people who know me close at hand.

I have met my share of weirdos of course, but personally I find I get only as many in the chair as on my feet, only perhaps with a slightly different emphasis. And in Whitby, I know roughly who is who; I think I have been personally introduced to most of the local weirdos, and know which of them have issues with alcohol and which with heroin; the two require a slightly different tact as heroin remains, if just barely, the more expensive intoxicant.

It is just this sense of being the centre of attention and scrutiny that frightens me. People catch my eye and I don’t know how to react; whether to smile or look away. I end up smiling until my face aches – and even then I worry because I can tell a false smile when I see one and presume that others are not only as good at this as me but that it actually matters.

Which is the ultimate delusion of the sociophobe; that any of this actually matters, as if any impression I give to anybody has a profound and lasting effect on the course of our lives. As if anyone would be more than briefly offended if I went about with a scowl on my face, largely ignoring the people around me.

All this will pass. Unfortunately I know it won't pass the first time I go out - my anticipation is not the irrational bit. Previously I haven't expected these feelings after a relapse and I have had to turn back half way down the road when suddenly it hits me. Turning back is always a big mistake; facing something you have previously run away from is even harder than facing the unknown.

But if I do make it out this week and do the same next week and manage it again the following week, by that point I will have much more confidence. And I have to build myself up now before the spring and the tourist crowds return to Whitby.

I started writing this before the weather closed in on us; currently we are having a thunderstorm with really very heavy snow, although frankly I can barely make it out through the fog. The world has turned white! How can you have fog in a thunderstorm? I am sure there’s something quite wrong about that. Anyway, a jolly good excuse to stay in today.

Being good isn't always easy, no matter how hard I try

I spoke to Sister Mary yesterday. It was great to hear her voice again, and I felt guilty about the somewhat sardonic tone I have taken towards the nun thing. I didn’t realise how much I had missed her. She is by no means my closest friend, but is certainly my oldest friend. She has also always been a very faithful friend and I have no idea what she sees in me. I am a most unsuitable friend for a novice and I was an even less suitable friend for the sort of teenage girl who would one day become one. I have always had my foot in my mouth around Mary, much as I love her.

Anyway, she is extremely happy. Great thing about being in love with Christ is that He is perfect and never squeezes the toothpaste in the middle. Her passion is a joy to listen to, but I can’t help sensing that she feels desperately sorry for me because I don’t have God in my Life. And I don’t know what to say when she hints at this. I try to say everything is fantastic. I don't think she believes me.

And Mary did mention healing, which she never has before. Her mother has a similar condition to my own, but the lady offers up her suffering to get time off in purgatory (so I understand). Mary was at pains to point out that we all have things we need healing in our bodies and in our souls and the things we need healing in our bodies and in our souls are in no way connected to one another. Glad she cleared that one up.

See, look, there’s my sardonic tone again! I desperately don’t want to be cynical about this. It is all completely true to Mary, not only true but really great news for her. I really have no excuses. Do I feel insecure about my own beliefs? No, I don’t think I am at all. Do I feel jealous of her happiness? No, I am comparably happy myself much of the time.

What I am perhaps just a touch envious of is her ability to express her total euphoria at having found her vocation. She is without shame or inhibition in her happiness. That, I would like to be able to do.

As for the healing, I’ll do as God suggested to Moses and keep taking the tablets. For now at least.

Talking of spreading the word, March 8th is International Women's Day and Vegankid has set up Blog Against Sexism Day. Go on, sign up, it is only one day where you have to say something against sexism. Like, “Oi! Stop Sexism!” – that would do, I’m sure.

Above and Beyond: Butch's Diary

Disclaimer: This was inspired by this post by Lady Bracknell, but is not related to the programme she mentions, which I never saw, not even a moment of it. I wouldn't want to offend anybody, especially those who conscientiously took part in that programme; this is pure silliness.

Butch's Diary, to accompany the ground-breaking reality TV show Above and Beyond.

Our mission: To go to the local supermarket and shop for groceries by bus.

The team: A bunch of handicapped people, out to prove themselves truly handicapable.*

I am Butch and I am the exhibitionist leader. I spent fifteen long weeks in the Royal Marines and there's nothing I like better than stripping down to the waist and wrestling in the mud with the boys. That's right; totally able-bodied me, there isn’t so much as a crippled hair on my taut, sinewy body. No way - I wax.

But I do like to do my bit for those less fortunate than myself and last year when one of my very many girlfriends twisted her ankle in a tragic stiletto accident, I began to think about the disabled and what I could do for them. So, together with the producers of such hard-hitting documentaries as Who ate all the pies? and When Librarians Crack we sought to crush the old stereotypes about people with disabilities by taking a group of them on a trek to the supermarket. This is our incredible story.

1000
The exhibitionism suffers an early set-back when two of the team cannot get out of bed in the morning. The producers are enthusiatic about the spectacle of these invalids being carried through the streets in their beds, but it is felt that we will not be able to fit the beds through the checkouts at our final destination. Damn shame. Would have made for great television.

1015
The team comes across a car parked on the pavement and some of us simply can't get past. We have to backtrack two hundred yards down the road in order to find a lowered kerb where we can all cross safely. This results in missing the bus we were hoping to catch and some team-members are now in a great deal of pain. I am so damn proud of them all. Ground-breaking stuff.

1025
There is a great sense of victory when we arrive at the bus-stop. There is a normal woman already waiting there, so I explain to her that there is no need to feel nervous; these people are with me and I am an experienced exhibitionist leader. There are no benches at the bus stop so we are having to work as a team to support one another in a standing position. This must be the pluckiest damn bunch of challenged individuals I have the privilege of working with.

1035
When the bus arrives we realise that there is no way we can get the wheelchairs onto it. This means we’re going to have to lose the two most visibly disabled members of the team at this point, which is a real blow. I’m not so bothered about The One That Dribbles, but both the producers and myself are really sad to have to leave The Pretty One behind. She is so damn brave and, lets face it, so damn pretty. I could almost fancy her. When I say as much, the chick bursts into tears, resulting in a full five minutes footage of running mascara. This is great television.

1050
The bus ride to the supermarket gives the team an opportunity to have an intimate chat. I am surprised to learn that some of our team members are quite experienced, making similar treks to the shops as often as once every week. A couple of the guys even joke that they usually drive there. Ha! I am humbled by their ability to laugh, despite the indignities of their daily existence.

The team begin to talk about something called the Social Model of Disability, but the producers and I are far more interested in talking about their various afflictions. I am rather disappointed by the number of Ones Who Look Perfectly Normal in our team – did nobody tell them this was television, as in vision as in, the public want to see your disabilities? They are letting both themselves and the team down if they are not even prepared to limp.

I turn to one of The Ones Who Look Perfectly Normal and ask what is wrong with him. He says he has clinical depression, so I tell him to pull his socks up; this exhibitionism is not for sissies who can’t take the strain without running home to Mummy. Another of The Ones Who Look Perfectly Normal tells me to “F**k Off”, which I identify as a symptom of Tourettes Syndrome – like that character in Ally MacBeal. Not that I watch Ally MacBeal; it being for chicks and I being a real man. I only hope this nutter doesn’t embarrass me in the supermarket.

I try to encourage the team to talk about sex, but they seem strangely reluctant to discuss the graphic details of their sex lives on public transport or national television. Perhaps there are just some subjects too damn painful to be spoken about? Still, this is ground-breaking stuff as it is.

1120
We arrive at the supermarket. One of The Ones Who Look Perfectly Normal collapses on the pavement just outside the shop. We get some fantastic edgy footage of him lying on the ground as fellow shoppers hurry nervously past him. I think they must think he’s drunk. It really saddens me that he had to lie there for a full ten minutes with the cameras rolling before anyone came to his assistance. Damn tragic.

1130
Inside the supermarket, the pressure is on. Many of our team members find this a hostile environment; the bright lights, the noise, having to make decisions amidst a total information overload. One of the Ones With A Stick is knocked over by some maniac rushing round with a trolley (not our own, literal maniacs, you understand, it's just a turn of phrase). Despite the vastness of the building, there is nowhere to sit down, let alone any quiet places where a person might take a moment to recover him or herself. Some of our team are really suffering now. It is truly humbling.

We're getting a lot of funny looks now. I do hope that members of the public can tell the difference between myself and the disabled team members.

1135
The producers and I have decided this is all too easy for The Deaf One. Not being able to hear ought to be a serious handicap and yet she is getting along as if there is nothing at all wrong with her. To increase the challenge, we confiscate her hearing aid.

1140
Ooh, now look who’s got a bee in their bonnet? Several of our team members object to our removing The Deaf One’s hearing aid and now they’re getting stroppy. I am appalled at the team’s ingratitude – don’t they know that I could be elsewhere, leading an elite squad of SAS paratroopers through the Food Hall in Marks & Spencer? Still, the argument that ensures makes for great television. Any minute now somebody is bound to pass out, have a fit or perhaps run amock with a stale baguette.

1145
When we suggest that they will be be breach of contract if they take any medication, the whole bunch of the chippy bastards declare that they'll abandon the programme and make their own way home. Yeah right - I'd like to see them try! I tell them to hold it together; pain, nausea, breathlessness and so on is all a question of mind over matter. People want to see a little sweat and a few tears; if they wanted to see pill-popping and injections they could have watched Top Hundred Most Wretched Celebrities on the other channel. I know about suffering, I know about disability. And I know that the team is damn helpless without the production crew and myself. We’re not at the Daycentre now; this is the Urban Jungle.

1150
The production crew and I head for the Coffee Shop to debrief after the team have abandoned us. We briefly hope that at least the One A Bit Like Forest Gump would have got lost and wandered in our direction, but it seems that he is perfectly capable of finding his way.

So what did we learn from today’s exhibitionism?

Well, we certainly crushed the old stereotypes about disabled people, learning that disabled people are extremely brave and not altogether useless. They are also a damn plucky bunch who overcome the odds to smile through the tragedy of their injuries and disorders.

At the same time, disabled people are, remarkably, still human. In some respects, they are little better than ordinary members of the public who have no idea about the art of truly great television.


* handicapable comes to you courtesy of Melbamae - who didn't invent it, but told us of it.

Proverbs I wish to exterminate

Francis Bacon said that “The genius, wit and spirit of a nation are discovered in its proverbs.” It is therefore imperative to rid our language of the following proverbs and sayings which demonstrate neither genius, wit nor the spirit of our great nation:

You can’t have your cake and eat it

But you can! You can have your cake and eat it. You can’t eat your cake and then have the cake that you have just eaten. But if you do have a cake in your possession, the only sensible thing you can do with it is to eat it. Otherwise it will go stale.

This meaningless expression is most often used in situations where people really mean, You don’t deserve this as in “If a woman has a family, she cannot expect to have a career as well. You can’t have your cake and eat it.” or “If you want a job here, you’ll have to learn to stand up and pee with the boys. You can’t have your cake and eat it.”

Of course there are some choices in life which are mutually exclusive but since having cake and eating cake are not, we really need to ditch this one. While I’m on the subject of food…

You are what you eat.

No you’re not, neither literally nor metaphorically. If you eat terribly unhealthily, poor health is likely to eventually result and with some medical conditions, what you eat can have a dramatic effect on your prognosis. However, diet is just one small part of what determines a person’s health and well-being. Most people who are sick didn’t eat themselves into that position, nor may they eat themselves out of it.

It is so miserable that we should be made to feel guilty about food. Food should be a source of tremendous pleasure in life but is beginning to replace sex in the minefield of personal morality. This is not about how the food was produced, an area which might actually raise some moral questions. Instead we are made to feel guilty about the nutritional content of what we are eating, and most problematically, properties of food which are mere speculation; wheat is poisonous, carrots make you lethargic, eggs cause wrinkles etc.

I don’t advocate total abandon or gluttony, but in the absence of some established condition (as opposed to self-diagnosed cucumber-intolerance), food should be about sustenance and pleasure. We have a greater opportunity for both than most other people on the planet or in our own history.

A leopard can’t change its spots

Of course, a leopard really can’t change its spots. However, human beings can and do change, frequently for the better. There are valid reasons for not giving a person another chance to let you down, but these are usually quite subtle and complex; to assume that one mistake or one troubled period in a person’s life represents how they will continue to behave for the rest of their lives is inexpedient as well as deeply uncharitable. All criminal convictions would warrant life sentences.

A more useful proverb would illustrate the need to see evidence of a change. Some of us are very easily drawn back into relationships with people who hurt us, especially those with whom we share a few genes, when the offending persons have not even expressed the intention to change. On the subject of which…

Blood is thicker than water

Once again, this is literally true. However, the things which bind us to our families have very little to do with blood. Thousands of people may have contributed to the DNA of the individual sperm and egg which set you going, so why do we expect to resemble and get on with the group of contributors who happen to be alive at the same time as us?

Of course your parents do have a conditioning influence on you and your bond with them is likely to be much as Philip Larkin put it. However, this has far less to do with blood as the fact that it was these individuals or individual who dominated your most formative years and on whose ongoing investment (love? approval?) your survival was dependant.

Despite the fact that siblings will share many experiences with you growing up, psychometric tests show that non-identical twins have as little in common with one another as any two non-relatives from a similar cultural and socio-economic background. Some siblings bond and remain good friends, but it is not at all surprising when some siblings are like strangers to one another.

A fish worth its weight in gold

Ooh, I’m back already. I thought I was going to be stranded off-line until at least Tuesday, by which time I imagine you might have missed me, but due to the miracle of modern technology and the excellence service provided by Royal Mail, my popped router has now be replaced within thirty-six hours of its going pop.

In local news, Whitby has been shaken by the discovery of a rare haddock, worth its weight in gold. I thought the name of the chap they spoke to at the Sea Life Centre was appropriate, but I am still confused as to who is going to pay its weight in gold or equivalent currency. I sent roving reporter [...] out to Sandgate Seafoods to describe the scene.

"It was incredible," he said. That was it really.

Notice when an animal is described as a freak of nature it is considered to be of tremendous value.

Did you know that Charley was played by Kenny Everett?

I am odd I know, but I have been loving the BBC News website's Public Information Film Festival and today they had one about playing with matches starring Charley the cat. A work of genius.

Other highlights of the festival so far have included one from the Tufty Club, the emancipating Jobs for Young Girls and the frankly terrifying Spirit of Dark and Lonely Water.

I have to add that I am too young to remember any of these first hand but I'm sure that they showed us this one at school - I still have nightmares.

A candlelit shadow on the wall near the bed

There is a scene in my book that I keep going over and over and over and over. It is no good going away from it and coming back to it in a while, as I have been doing this on and off for the last six months. It is not an important scene in so far as you probably wouldn’t remember it after you'd read the whole book, but it is kind of crucial in establishing an important relationship – if I can’t get it right, you won’t understand why people behave as they do later on.

My protagonist receives an unexpected visit from an old friend. The last time she saw this friend, all sorts of bad things happened, but that was many years ago. So she feels very conflicted, like you do. On the one hand, there is all this unresolved tension and upset suddenly dragged to the surface after all these years. On the other hand, there is that thing you get with old friends where, no matter what, you have a closeness, an affinity, I dunno – clearly I am emotionally illiterate, which is why I’m having such difficulty.

Thus the resulting conversation seems impossible to write. These two characters seem determine to launch into Tennessee Williams style speeches – they'll adopt the accents if I’m not careful. But people can say things in plays which they can’t say in books and dear God, it is awful. At one point they both started crying and I had to slap their faces and demand they get a grip. It seems unlikely that either of them would attempt to confront the past head-on, not during a first meeting after all these years.

Attempts to get through this have included giving my protagonist a cat. Honestly, I attempted intergrating this stupid cat into the entire plot just for the benefit of this one scene. My protagonist could remain cold and aloof, but the cat sat on her old friend’s lap and purred, symbolising her unspoken affection and… oh well you get the picture and it was even worse than it sounds.

I was about to explain other ways in which I have tried to get over this, but they were all so bad it would be embarrassing to even try to write it down. Whatever happens, I have to rewrite the current disaster which includes the line of dialogue:

“Last time we touched, you broke my collarbone.”

I’m now going to lie in a darkened room and consider alternative careers for a severely disabled twenty-five year old with no qualifications or work experience.