------------ ---------- Diary of a Goldfish: June 2006


Diary of a Goldfish

Wednesday, June 28, 2006

Yesterday

Just yesterday, we installed a brand new CD-RW drive on my laptop - mine had conked out some time ago. Whilst on eBay, he had also bought a new power supply, which sought to fix the ongoing problem with my laptop.

This morning, no power; brand new plug stuck in socket. Really stuck, like something has melted in there. Only enough battery power to fire up and save my most recent work to USB pen, before the laptop, once again slipped into a coma...

So I'm laptopless again. My work was going really well during the last few days. And having the youngest computer, my USB pen won't fit into any available socket - even if I was able to sit at the desktop for long periods, I couldn't access my work.

[...] is promising to go on a mercy mission to Maplin in Middlesborough in order to get a new plug and socket, but that'll be Friday at the very earliest, probably not until next week. And even then, no guarantee that my laptop will recover - especially if something has melted.

I am cursed!

If it is dead, it will have to be replaced; it is more essential than my wheelchair to me. And fortunately this time I have already got my e-mail running through Googlemail so I have most of my addresses and all the e-mail I have received in the last month or so. And pretty much everything was backed-up.

Still, bugger. Bugger bugger bugger. If you'll excuse my language.

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Tuesday, June 27, 2006

When the falling stars are shooting, And the answer'd owls are hooting

Today I have mostly been editing the book, coming across sentences the likes of

My heart crumpled like a Chinese lantern trodden underfoot.

See I know what I meant when I wrote that, but you can see why I have crises of faith.

I've also been searching the Internet for a riding crop, which is the item my father requested as a birthday present this year. My eyes have been opened to a whole new world, and one with very little to do with riding horses. And yeah, it did occur to me after I had found a suitable item (i.e not made of PVC and pink feathers) that it was perhaps not the most ethical of purchases. Fortunately, having already fulfilled my guilt quotient for the day, I decided that since clearly human beings seemed to get a lot of pleasure out of riding crops, so (probably) do horses.

No, I know that doesn't work. Sorry.

Two bits of stuff for you:


Disability Nation Podcast


An American chap called Larry Wanger has set up a new disability podcast called Disability Nation. I think this project has a great deal of potential; there are three episodes so far. I was unable to access the first one (the site still contains a few broken links), but I listened to an interview with a lady called Patty Dobbs Gross who runs the North Star Foundation, which breeds and places service dogs with children with autism. I found this very interesting - as far as I know, there is nothing like this in the UK.

The other episode I listened to had an interview with Lucy Gwin, the great character who founded Mouth Magazine. Larry himself is a very natural presenter and there's uh... no Jeremy Beadle
(apparently, the next Ouch podcast is coming any day soon).

In other disability-related news, this was the funniest story of the last week.


The 2996 Project.

I am not keen to do this myself, but thought some folks may be interested in the 2996 project, to get 2996 different bloggers blogging about the 2996 different individuals that died in the terrorist attacks in the US on 11th September 2001.

The idea is that each blogger who wishes to do this is allocated the name of one of those victims and agrees to write a tribute to them on 11th September 2006 (the five year anniversary). Given that they're trying to get 2996 bloggers involved, I guess they need as much publicity as they can get.

(via Strange Culture).

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Monday, June 26, 2006

Telling it how it is.

I was harping on about sex and disability and got to thinking about the ways disabled people can communicate our limitations. I meant this to be in the context of sexual or romantic relationships, but really it applies much more generally. I also realise some of this advice may seem glaringly obvious, but if it is down here, then it hasn’t been always obvious to me.

It is of course based on the premise that there is nothing to be gained by pretending that your impairment doesn’t exist or is not so severe as it is. Doing this greatly increases the chances of overexertion, embarrassment and awkwardness, physical danger, causing upset or offence to other people and generally having a bad time. This is especially the case with close friends and lovers because these people expect you to trust them and in turn, trust you to tell them anything they need to know.

Nobody wants to make a song and dance about their medical problems or impairments, but the only way to reduce the impact these things is to put certain steps in place. Part of that is to give other people the relevant information. I find the following rules to be extremely useful:


1. Do not include unnecessary medical information.

When people used to ask what was wrong with me, my heart used to sink. This is because I felt that (a) I was obliged to give an honest answer and (b) I was obliged to answer with complicated medical information that the questioner was unlikely to fully comprehend.

In fact, apart from doctors and perhaps my next of kin, nobody needs to know my medical diagnosis. And whilst labels by themselves are no problem, folks do get distracted by this stuff; So what causes that then? Will you get better? Is it going to kill you? Is it contagious? Do you think perhaps the government is trying to poison you as part of a biological weapons experiment?

All these questions and more, I have been asked. None of these effect the way I live my life. And this is one of the main reasons I avoid mention of my diagnosis on the blogosphere (that and the fact that I think I am being poisoned by the government and don’t want them to know I know…).

If you are in any kind of relationship of trust, all a person needs to know is the practical effect of your condition or impairment. Providing a diagram of why this is the case will distract them and make it more difficult for them to take it in. If the medical side is of interest, save that for another conversation.


2. Do not include unnecessary emotional information.


There will come a time in any relationship where you sit down, get drunk and describe your distressing childhood, your tragic accident, your narrow escape from the jaws of death and how you recovered to drag yourself up Ben Nevis by the strength of your little finger.

Like medical information, this stuff is a big distraction. Give people a choice between a factual bit of information and an emotional piece of information, they’ll go for the emotional one and forget everything else. If you say, “I had a nasty accident when I was young and I can’t bend in the middle.”

You’ll get, “My god! What happened?!”

And you’ll have to explain all about it, answer further questions. And after profound expressions of sympathy and admiration, the other person will ask you to pick something up off the floor, having completely forgotten that you can’t bend in the middle.

Use calm, matter-of-fact language. For example, when describing pain, you don’t need to say, “It really really hurts,” merely, “It hurts and I can only stand for a moment” or whatever is relevant to you. I know it may sound silly, but anything which inspires sympathy is going to make it more difficult for someone to take in facts.


3. Keep your feelings in word form.

If you do feel that the piece of information you need to get across is a big deal, or if it makes you very nervous to talk about the subject, it is far better to say as much without it actually being self-evident. It is far better to calmly say, “I’m really worried how you might feel about X.” than to turn bright red, start shaking and express whatever your problem is in a squeaky voice.

The latter looks so uncomfortable that the other person is going to wish to change the subject and put you out of your misery. They are not going to wish to return to the subject because they won’t want to upset you. If you can express your concern in words but calmly, then you have revealed your vulnerability but are still able have a conversation about it. A degree of vulnerability can be attractive; terror is not.

Similarly, if you become frustrated when people let you down and ignore your limitations, state it in plain words, “I am frustrated/ angry/ disappointed.” Losing your temper will cause others to be defensive. And whatever you do, don’t sulk or make a complaint in a roundabout way – if people have forgotten or ignored your limitations, only a verbal reminder is going to get the message across.


4. Give practical examples.


Some limitations like pain, fatigue and perhaps most especially limitations related to mental ill health really need spelling out. Everyone gets achey, everyone gets tired and everyone feels sad or anxious from time to time. You have to make sure they know your problem is much more than that.

The best way of getting any limitation across is to give a real-life example of practical consequences – this is the case whether talking to a potential lover, a doctor or filling in your DLA forms. As far as social and romantic situations are concerned, an example might be that instead of saying, “I am tired all the time!” you might say, “I have a very limited stamina, so I may have to go home early.” Instead of saying, “I’m terrified of talking on the phone!” you might say, “On a bad day, I have to let the answer-machine pick up my calls for me.”

You can also use this to get across information which may effect sex, without actually saying, “If we’re going to have sex tonight, you ought to know…” For example, some folks may mention that their medication effects their appetite, others may mention the fact that they can’t do press-ups. Okay, I just thought of half a dozen terrible euphemisms, but I’m sure there are ways of subtly getting across that you have a limitation in the bedroom department. Now I've got the giggles.


5. Be enthusiastic


I am not suggesting that this should all come out in one conversation, but should trickle out over time. Some of this stuff has to be repeated, or reapplied to new situations.

One thing I would recommend is to always try to express enthusiasm about any suggestions people make - unless you genuinely don't want to be involved. Sometimes when someone suggests something which is either impossible for you or would cause immense difficulty, it is tempting to make out you don't fancy it, or even be angry at the suggestion. Unfortunately, as with sulking, other people may struggle to figure this out, and assume you're not interested in anything. Disinterest, rather than incapacity, is what makes a person seem boring.

So, when someone invites you skydiving, your answer should always be

"Oh, I would love to go skydiving! That sounds fantastic! Unfortunately, you have forms from your doctor to say you are medically fit and mine would never go along with that."

It also helps to blame someone else but...


6. Never use your impairment as an excuse


I guess we all do, sooner or later, but this can be immnensely costly if those we rely on figure this out. Especially if you have an invisible impairment, the disadvantages of which Lady Bracknell has described. If you want to get out of something, but wish to spare feelings, there are plenty of other excuses to be had. A policy of honesty is ideal, but certainly non-disabled people manage to excuse themselves from activities without too much trouble - so can we.


7. Be assertive


This is very difficult to explain, and highly subjective, so I will discuss a real example involving not lovers or friends, but family:

When I was down south, my sister came to stay for twenty-four hours. I was having a bad day, but the others fancied going out. So, during those few hours which may yet be the only time we see R this year, my Mum, Dad and Rosie decided to go out for a pub lunch without us. There wasn’t anywhere specific they wanted to go, just out of the house for a bit. They did of course ask, “You don’t mind if we go out, do you?” more than once, but what could we say?

Unfortunately, especially as far as my family are concerned, I am absolutely incapable of standing up and saying, “Yeah I do mind; you don’t need to go out, but I need to stay here. This is a rare opportunity for us to be together. If we are such dreadful company, we will pack up and go as soon as my health permits so you need suffer us no longer than absolutely necessary!”

The fear is of course that people are going to then grudgingly hang around, that folks are going to resent you. So instead, I avenged myself by finishing the cake for lunch so there was none left for anyone else. Ha ha ha! Ha ha ha! Ha ha ha ha ha!

If any of the family are reading this, it is forgotten, really it was no problem; it just came to mind again as an example. Honest. Really. Ha ha ha! Ha ha ha! Ha ha ha ha ha!

Thing is, there must have been a way I could have handled this without this passive-aggressive nonsense. Some middle way between saying nothing and being noticeably angry. Uh…

“You don’t mind if we go out, do you?”

“Well, I would like to go out myself, just to spend time with you and especially Rosie who is only here for a short time. Unfortunately, I really can’t, I’m really not up to it today. But I’m not so ill that I can’t enjoy your company. I am sure there are nice things to eat in the house – like that cake for instance.”

Then if they said, “Oh but we’re bored around the house, we want to go out.” Well, then one has a right to be cross, and express disappointment. However, I think that if I had managed the above rather than saying nothing at all, they would have hung around without resentment and everyone would have been happy.

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Friday, June 23, 2006

How to live long and stay healthy

This has to be the health advice to end all health advice: Don't use your mobile phone outside, in an open space during a thunderstorm. It is extremely unfortunate that one young woman suffered serious injuries after being struck by lightning whilst on her mobile phone. Injuries more serious than if she hadn't been on the phone, as the phone increases the amount of energy which enters into your body.

However

(a) There is still an only one in three million chance of someone in the UK being struck by lightning in the first place (Americans get struck more often - they're far more religious).
(b) Using a mobile phone does not effect your chance of being struck by lightning, only the damage it might cause if it does.
(c) Wearing any kind of jewellery or an underwired bra would increase injury in a similar way.

So let's recount some sensible advice about thunderstorms, if you happen to be stuck outside, don't go anywhere near trees, pylons, poles or bodies of water. Get to low open ground as soon as possible. If you are somehow stuck in a high exposed place, discard anything metal on your person (including your pockets). Crouch down with your head between your knees, but in such a way that your body is in contact with the ground as
little as possible.

And when you are safely indoors, don't use the landline phone either. In fact, unplug any electronics from the landline - I have had a busted modem when lightning came down the line, it does happen.

However, for persons being struck it is still
one in three million. There may be a slightly more worthy subject matter for the BBC News website's health pages.

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Thursday, June 22, 2006

Oh, life

I am having a difficult week. Last weekend I learnt that one of my irrational bad feelings was in fact perfectly justified (or almost; could have been worse, could have been much worse - no deaths, thank God) and ever since I have been in a state. Partly because of the bad thing, but partly because my levels of self-trust have risen somewhat and all the demons that usually jiggle and niggle in the shadows have come out to do a little dance in the sunshine.

For the third time in a week, one of my friends is missing. The first one, see above. The second was on a scheduled trip away from home, I simply got confused about the timing and panicked. A real imaginative panic, though.

This time it is P, who we were supposed to meet to watch the sunset. I phoned to cancel yesterday, leaving an answering-machine message and a request to phone back, plus I sent an e-mail. But I hadn’t even had a confirmation from him that he was coming. There’s no way he would be sulking about my not being well enough to come out or anything like that.

(Incidently, I was disappointed about the sunset, but later relieved; [...] walked up the beach and said it was cold, windy and the sun disappeared behind cloud before it fell into the sea.)

P often goes quiet for a few days. For one thing, he does have bad days, which he literally spends staring into space. And he has profound short-term memory issues; you never leave the house to go meet him without having confirmed that he knows what day it is and what's going on.

Only, I haven’t heard anything since Monday and I left an answering-machine message and sent e-mails yesterday. So I'll be completely distracted until (I'm sure) I hear that he's finde and dandy and just got in a bit of a muddle.

Also, I have another wisdom tooth coming through and seem to have developed some sort of allergy to music. Here is the unlikely playlist of Songs Which Have Set Me Off Crying this week so far:

I say a little prayer – Aretha Franklin
Heroes – David Bowie
Friday, I’m in love – The Cure
Are Friends Electric? – Gary Numan
Angie – The Rolling Stones

I mean, Angie for cripe’s sake. None of them are even vaguely tear-jerking, are they? Don’t worry, all my tears have had a musical accompaniment, and this is over a week – that’s less than one cry a day, but then only for a week. Before then, it had been a long while. This is a reactive episode not an ongoing state.

So this afternoon I decided to purge. I sat down and listened to

Fire and Rain – James Taylor
Hurt – Johnny Cash
Losing My Religion - REM
Let It Be – The Beatles
Dock o’ the bay– Otis Redding

That should just about do it. Now need to rehydrate.

Note to Self: Subject all future candidates to full medical exam before admittance to heart.

Uh no, not really.

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Wednesday, June 21, 2006

Every day I look at the world from my window

We were supposed to be going up to the West Cliff to watch the sun set over the sea this evening, but it ain't going to happen. Still, here is last year's picture.



Hope everyone is having a pleasant solstice.


This is a picture taken at the Solstice in Whitby by my friend Pete, first published here, this time last year. Please do not copy it without permission; the copyright does not belong to me.

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Tuesday, June 20, 2006

Suffering Succotash

Bit heavy today. Am in dark and heavy mood.

I have long felt that the thing which makes us truly moral beings isn’t the fact that we can devise rules about what is right and wrong and live by them. The thing which makes us truly moral beings is our capacity to navigate the grey areas, our capacity to recognise that in some situations, one cannot make a choice that is completely and utterly comfortable. That’s what makes us amazing, really; that we are not completely paralysed when forced to determine the lesser of two evils.

Unfortunately, none of us are up to the task all the time. When I look at discussions about abortion and euthanasia, whether it's proposed legislation here or abroad or new technologies in development, all I see are the same black and white arguments being made over and over. And given that we are talking about life and death, some of the most serious moral questions for society, you would think that we would acknowledge that these decisions are all grey – no decisions can be made around abortion or euthanasia, the outcome of which is wholly good. The situations where these questions arise always involve some tradegy.

Now some people have religious beliefs that I don’t subscribe to, but even religion acknowledges that sometimes our greatest deeds involve the compromise of a profound moral principle. For example, despite the fact that life is sacred and suicide a mortal sin, one of the greatest things a person can ever do is to give up their life in order to save another person or in the name of their God.

Similarly, whilst our culture and in particular our medical profession is geared up towards the preservation of life (including pregnancy) as the primary objective, perhaps there may be extreme circumstances where there is virtue in breaching this principle. I do believe that.

However, all around I still see folks attempting to simplify this as all life is sacred and must be preserved or all suffering is intolerable and must be avoided. And whilst I am no kind of moral relativist, neither of these are useful starting points.

Take suffering…

Fact is that honestly, truly, absolutely, I believe that I have an excellent quality of life, despite my morbid compulsion to italicise in almost every sentence.

However, this quality of life is extremely fragile and dependent on a number of unstable factors which make life enjoyable as opposed to barely tolerable. I suffer; I have pain and various symptoms which are challenging to live with. Sometimes life is very hard. Sometimes life seems hopeless. But when things are bad, the thing that gets me is fear of things getting worse, or the worst days becoming normal.

This is so scary, so very scary, that I actually comfort myself with the idea that if it ever gets that bad or goes on that long, then I can always opt out.

Now that might just be a game I play to cope; I haven’t contemplated suicide in a long, long time. And the funny thing is that sometimes it does get worse and the bad days do go on and on, but when this happens, it isn’t nearly as bad as I anticipated.

It has been noted among disabled people that many of us consider ourselves more fortunate than those with a completely different impairment – who in turn consider themselves more fortunate than us. And some non-disabled people tend to feel sorry for all of us, often baffled at how any of us cope.

This is a very simple but fundamental limit of the imagination; we don’t know what it’s like for the other guy. And in general when it comes to medical matters, we tend to imagine it to be really very bad indeed. (The bizarre exception being mental health impairments, where we refer to our own everyday experiences of frustration and melancholy and imagine it’s a bit like that.)

Now I’m not for a moment taking the view that all our lives are as good as they possibly could be and being ill or impaired is no disadvantage. It is a disadvantage, it comes with all kinds of weird and wonderful problems that you’d never have dreamed of. But I always think about these little machines exploring miles and miles under the ocean. Just when you’re sure that you’rer so far down that no organic life could ever survive those pressures, there is the campest-looking crustacean you have ever beheld. It prospers in the deepest darkest places of on the planet. If it gets down-hearted about its place in the universe, it just looks in a mirror.

Similarly with pain, indignity, suffering and so on; it is amazing what people can endure, the lives which remain worth living. The places that we find humour

And it is amazing what some people consider unendurable, and on what grounds. Ballastexistenz writes about folks wanting to eliminate people like herself from the gene pool, simply because of the alleged blank stare on her face. Because she doesn't look like she's having too much fun? Are we all going to have to Botox our faces into an eternal grimace?

And this kind of thing is one of the two major problems. The other is that, with all due respect to the medical profession and the very many conscientious and caring professionals out there, there remains a culture of paternalism; some professionals claim moral authority as well as medical expertise. Patients are inexpert, therefore irrational; they can't be trusted to know their own wishes.

This is complicated by the fact that despite its merits (and believe me, there are a great many) people within the health system can be seen, at times, as economic units.

And thus, this country has only begun to debate the subject of euthanasia and already some "expert" suggests that consent should not be necessary

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Monday, June 19, 2006

The Peacock

I mentioned that there are lots of interesting birds in my folks’ back garden; loads of wrens, chaffinches, goldfinches, thrushes, blue and great tits – all of which seem exotic to me as I only ever see various gulls, swans, wagtails, guillemots, shags etc. Well on Tuesday my mother came home to find a peacock strutting around her garden. A peacock. Beat that, eh? Since then it has been back several times, including a spell on my parents’ roof.

One morning in our back garden in Ipswich, I saw a bright blue budgerigar (or parakeet, if you prefer) who thought it was a sparrow. It was hanging out with the sparrows, it arrived with them and left with them. Of course I was the only person awake at the time and nobody believed my story.

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Sunday, June 18, 2006

Disability Dating Dillemnas, for lack of a better title

More on sex and disability. I realise I have moved straight on from the subject of looks to dating, having skipped the non-visual forms of attraction - but I am going at this in a clinically haphazard manner.

I have never been on a date. It wouldn't be the whole story, but impairment and disability do have a significant impact on my capacity to do the dating lark in anything like a conventional way.

Fortunately, I am at the more buggered up end of the spectrum; I have long periods stuck at home, much of the time in bed, so there would be an issue in even meeting new people anyway – other than on the Internet and then there’s the small matter of geography (among other things).

These obstacles are not to be underestimated. For some people, the practical circumstances of their lives more or less rule out having a sexual or romantic life.

However, say I was to be asked out by someone who did not live at the other end of the country;

  • I am unreliable. Often I have to withdraw from an organised social event because I’m not well. I might feel better the next day. Or I might not be better for a couple of months.
  • At the same time, spontaneity is out of the question; I need to pace myself very carefully in order to achieve anything beyond the things I absolutely need to do.
  • Even then, my stamina is poor so I can’t do a lot of the things folks would normally do on a date. I may also have to come home early. I can become extremely tired very quickly and fall asleep in strange places.
  • I use a wheelchair, so everywhere I go has to be physically accessible. Many pubs, theatres, restaurants and nightclubs are still out of bounds.
  • My health prevents me from driving and I can't used most public transport, which remains inaccessible. Any car that transports me needs to be able to get the wheelchair in it.


Now, I am a lovely person, but if you just asked someone out and they rattled off that list, wouldn’t you be just ever so slightly put off? If you were just after an encounter, then this would rule such a person out - it just wouldn't be worth the bother. And if you were interested in more than that, you'd have to be very interested.

Like I say, my situation is extreme and most disabled people don’t have nearly this amount of difficulty. Many disabled people don’t have any of these problems at all.

However, many disabled people do have access issues which can effect spontaneity. Many disabled do have impairment issues that effect what they can do and where they can go in comfort. Many disabled people do have fluctuating conditions that mean that they have to let folks down.

As you can gather, this is one way in which being disabled can really trample your confidence; can anybody be bothered with me? Dare I ask another person to burden themselves with me even for an evening? Won’t they think I cause a lot of fuss? Will they believe me if I really want to come but am not well enough that day? What if I fall asleep during a conversation?

This apart from the fact that the other person has to be worth all the energy on my part. And then there’s the small matter of sex...

The answer to all these matters is that some disabled people have to face the fact that (a) dates with folks we hardly know leading quickly to the bedroom are simply not on the cards and (b) the pool of people from which we might find potential lovers is significantly smaller than for other people. We need easy-going folks who have a bit of imagination and empathy, who take us at our word. People in whose presence we feel completely comfortable, who respect us and our limitations without suffering from what Sainthood Syndrome or assuming that disabled people are easy.

Now, on the one hand, these folks are hard to come by.

On the other hand, a lot of the dating that other people do is in all about the tedious process of whittling down their massive pool of potential lovers in order to identify just these people.

And to this extent, it could be argued that we have avoided a whole lot of hassle.

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Saturday, June 17, 2006

I mean it, man

Now unlike many other countries, most Britons only know the first verse of our national anthem. Since it is the Queen's official 80th birthday, I thought I would attempt to put it right and give you all four verses. Thought there were six did you? Well, the others just went on about the Jacobite rebellion or some such nonsense.

God Save The Queen

God save our gracious Queen,
Long live our noble Queen,
God save the Queen!
Send her victorious,
Happy and glorious,
Her hats are notorious;
God save the Queen!

She brings the tourists in
Although we all think her kin
Are somewhat mad!
But she is head of state
And on this particular date
She awards Honours to the great
God save the Queen!

Her Maj. can’t do fairer
Than give our friend S****
An MBE!
She’s so deserving,
Courage unswerving,
So clever it is unnerving,
God save the Queen!

S**** put up a fight
For our disabled rights
And helped us all!
May she be fighting fit,
So she can make the trip,
She’s such a stalwart crip,
God save the Queen!


So when they ask the question, is the Honours system relevant? The answer, this year at least, is very much in the affirmative. Well done S****!

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Friday, June 16, 2006

The first time ever I saw your brace

I was thinking of blogging about sex and disability, which may become several entries (sorry). There are a few discussions on the Ouch Messageboard along this theme just now, but they seem to be going around the same old circles; some of us feel that disability makes no difference, others feel it makes all the difference.

Turtle had these wise words to say on the subject;
it's the same with everything though isn't it...if you place too much emphasis on Disability - that which you can't and don't want to change - you're never actually gong to step back and look at yourself and the things you can change. I hear from other people (and me) 'I can't get laid because i'm crippled' and it is a load of rubbish half the time. its actually a bigger problem of self image and how you relate to other people. Disability informs that problem, it does not define it.

Turtle is good like that; you want to say something and you find she has already said it better than you could. By far the biggest problem facing disabled people when it comes to love and sex is confidence. This is not inevitable, but nor has it come from nowhere. All sorts of disabling experiences have the potential to flatten your self-esteem and sex is the area where the average human being is probably most vulnerable to self-doubt and psychological baggage.

However, this doesn’t mean that impairment and disability are always irrelevant to sex and romance. And I wanted to write about the actual factual obstacles that disabled people can face. Of course, I can only write about the things I know about in my normal rambling fashion, but it may be a start.

The first question I want to ask is

Do disabled people look less attractive than non-disabled people?

Some impairments have a fairly dramatic effect on appearance, not necessarily rendering a person unattractive, but in any case I have no experience on what it is like to occupy a very different-looking face or body. I can't really comment on what impact that might have.

However, since I don’t always use the wheelchair, I know that there is some difference in the nature of attention I receive when in or out of the chair. I have received the look of admiration (at least so I like to delude myself) from a young man, who then notices the chair and looks quickly away with an expression of horror as if he had just had a sexual thought about his own grandmother. Sometimes.

Sometimes the gaze is held, the young man trips on a kerb and the next time I see him he’s in a wheelchair too. Which is very romantic, but would suggest some sort of evolutionary basis for the negative reaction.

However, there is no way that we instinctively discriminate against the sexual merits of person because of some slight physical difference or a piece of kit they happen to use – we may make social assumptions based on these things but our shagometers work on a far more instinctive level. Much has been said about alpha males and females and ideal body-shape, but since there are only about three of those perfect men or women on the planet, either we are all destined to disappointment or else the matter is far more complex.

Looks generally matter to most people, but it is usually difficult to determine what makes us attracted to one person rather than another. Some people can recite a conscious criteria of physical characteristics in their ideal lover. Most people I know, of all ages and genders, only have a vague notion of physical attractiveness, much of which relates to internal qualities any; they have laughter lines (they smile a lot, have a cheerful disposition) or have nice eyes (make a lot of eye-contact).

I tend to like men who have long hair, but I can’t say for sure whether it is the long hair I like or the fact that the Bohemian oddballs I tend to go for very often have long hair.

So what’s the problem with the wheelchair? What does the wheelchair imply about me?

Well frankly, it doesn’t matter. Someone who reacts in this way obviously doesn’t fancy me, and I have no interest in attempting to convert them.

Which sounds like I don’t care because I’m not looking. I do care. I don’t like horrifying those poor young men. But what on Earth, in a million years could I do about it?

Some disabled people talk about sex in terms of rights. Historically, some disabled people have been denied rights like that of sexual autonomy, reproductive freedoms, privacy, sex education and access to contraception. At the very least, many of us had parents who went into denial about our sexual development because of our perceived vulnerability. All very unfair.

But sex itself is not an unconditional right for the individual. Love isn’t any sort of right at all. Being fancied is not something we can demand of people who don’t find us attractive.

For one thing, being disabled doesn’t mean that folks who don’t fancy you are necessarily prejudiced. But perhaps most importantly, even if they are, nobody is under any obligation to address that prejudice. Personally, I don’t understand folks who claim they only like to date people of a certain height, hair-colouring, income, or anything nearly so specific, but it is absolutely up to them.

This is a really important point that folks often miss when they talk about sex and disability. Whilst in a an ideal world, all men and women will be considered equal in most areas of life, every individual has preferences and criteria for those people they are attracted to, consciously or not. It doesn’t matter where things come from or what that person might be missing out on; it is none of our business.

But - and it is a big but – it is almost certainly the case that those criteria which exclude disabled people so absolutely are based on a misguided view of what and who we are. And that’s something that, in time, we can change, as we change the overall perception of disabled people in all areas of society.

Still Turtle’s point remains. A less confident person might not have picked up on any gazes from anywhere. A less confident person might assume that any look was a look of curiosity or disgust. A less confident person might keep their eyes in their lap and not notice anyone noticing them at all.

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Monday, June 12, 2006

A little tale for Sally

Sally was abused in the street whilst out in her powerchair and I was going to tell this little cheering story in her comments, but I thought I would put it here instead.

I am fortunate enough never to have received any overt abuse from strangers - in my more vertical days I had a bit of low-level sexual stuff and in the wheelchair I get the usual patronisation and crap, plus all those hilarious comments about speed limits, jet-engines and go-faster stripes. Oh my, how I laugh!

However one day, when I started using my powerchair, I was a bit nervous about running into trouble. After all, I was going out by myself for the first time in years and in the manual chair I was always with [...] who is a 6'2" sixteen-stone skinhead and tends to go through life miraculously unharassed.

Anyway, I was trundling along an isolated stretch of road, where I spotted a crowd of young lads of about fourteen or fifteen, all dressed in black with unkempt hair, hunched shoulders and scowls on their faces - you know the type - and they were occupying the entire width of the pavement.

No lowered kerbs nearby, so no chance of crossing the road without it being obvious if I attempted to avoid them entirely, so I rode right up to them and said, "Excuse me please."

No response.

"Excuse me please!"

Nothing.

"Excuse me PLEASE!"

At my third request they all jumped a foot in the air, and proceeded to line up wit their backs flat against the wall, giving me far more room than I needed to pass, all making their apologies as they did so. One of the lads was slower to move and had himself violently dragged to the side by his peer who snapped at him, "Get out of the lady's way, you spaz!"

Which I must confess made me smile somewhat.

On a serious note, the fact that Sally's abuser was wearing a suit and these lads behaved as they did says much about books and their covers. I also wanted to say that, folks who abuse wheelchair-users would most likely abuse anyone who seems like an easy target. Which doesn't make it any less upsetting or intimidating, but it does mean that there is little room for analysing why any of us become victims. These twats are fairly indiscriminate, like playground bullies.

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Saturday, June 10, 2006

The Goldfish Guide to Complimentary Medicine #1

I meant to do this following this post by Charles Dawson (very sound wisdom, as usual). During the early years of my illness, I tried all sorts of things in an attempt to turn my health around. Some of them were useful, others not, but this is a general guide for how these things may be determined, just in case it is any use to anyone else.

1. Great Expectations.

Psychology plays an important part in all medicine; a placebo can sometimes provoke a response even in serious conditions of indisputable physical origin. Even the colours of our pills may have been chosen to make us anticipate their effects. Stress and mental illness can impair the function of almost every bodily system, allowing other conditions to set in and pre-existing conditions to persist and deteriorate. However, none of us have any direct control over any of this stuff.

The only real choices sick people have are about behaviours. We can chose to take our medication, do our exercises, attend therapeutic appointments and generally look after ourselves. A positive mental attitude is not something you can simply opt into; some of us are fortunate enough to be of a nauseatingly cheerful temperament, others of us have to actively seek that stuff out by altering behaviour; doing more fun things, talking with other people, spending your time productively, being nice to ourselves and seeking help where necessary. All of which may be terribly hard work, and frankly when you’re stuck in bed in pain all day, or have the demons of depression inviting themselves round for tea and cake of an afternoon, well, survival takes precedent.

One of the ways that charlatans operate is to exaggerate the power of mind over matter. For example, a friend went to a crystal-healer who explained to her that everyone who is sick has chosen to be sick and must choose not to be sick in order to get better. Now considering that my friend had a incurable neurological condition and this lady had a pile of rocks, it was pretty clear how all this was likely to end (or else go on indefinitely, waiting for change).

There is not much less helpful than investing time, money and energy in a treatment, to get your hopes up only to have them dashed and then have it all blamed on yourself. Even if by that stage you’re quite sure that the therapy is bunkum, you just don’t need it. Self-doubt is an inevitable part of living with chronic illness; am I doing my best? Ought I be trying harder? Is some of this all in my head?

Therein lies madness and anything which stirs this stuff up should be avoided from the start: if the therapy depends on some leap of faith or any particular attitude from yourself, just don't bother.

The same applies to any unrealistic promises on the part of the therapist. If you have received a diagnosis and information from conventional doctors, you probably understand your illness enough to know what is realistic. Remarkable things do happen and treatments which were once on the fringes do find their way into mainstream medicine. However, as a general rule, a therapist who confidently promises the miraculous recovery that has alluded people with your condition thus far, is almost certainly a quack.

Listen to the ones who talk about the promotion of healing and symptomatic relief. In a sense, complimentary medicine really ought to be treated as just that; complimentary to conventional medicine. If you can find something which makes your life easier, makes you slightly more comfortable, then this can be of immense value even if you don’t take up your bed and boogie.

2. A word about specialisms.

Many complimentary therapists of one sort or another have a specialism; something that they’re particular interested in and good at. For example, a herbalist chap I saw had a local reputation for helping women to get pregnant (!). Now I was there with my condition of the brain and spinal cord, but during his in-depth questions I happened to explain that I had always had what you might describe as random menstruation; there had never been much pattern to which days I would have the painters in.

This guy gave me a foul concoction – the most disgusting thing I have put in my mouth – which I had to take for fourteen days, and another slightly less revolting concoction to take for the next fourteen days. Almost instantly, I had a perfect twenty-eight day cycle and apart from the fact it gradually retracted to twenty-five days, it has stayed more or less regular ever since.

However, what impact this had on my overall condition, I have no idea. And whilst I am merely grateful for what was achieved it is worth considering whether a therapist has a specialism; I got the impression that if I had gone to this chap with a disease of the toenail, he would have worked on straightening out my oestrogen levels.

3. Money, Money, Money

This may sound a bit typical for me, but my experience suggests that the efficacy of a treatment is inversely proportional to its expense. I can’t rule out the possibility that my psychological dismay at the amount of money I had been charged effected the outcome, but it seems unlikely; I wouldn’t have spent so much money if I didn’t desperately want it to work. Therapists I have visited have charged between six pounds to eighty pounds an hour; the latter being a homeopath with a broken zip fly who eventually declared that perhaps I didn’t really want to get better. Git.

4. The scientific approach.

Presumably, if you don’t buy into the arguments for a given therapy, you’re not even going to try it. Well, you shouldn't; even if you are feeling desperate or some family member is pressuring you into it; your energy is too precious. So I don't need to express any of my own opinions about what is sound and what is bunkum.

Then again if you are prepared to invest in it, you’re presumably going to do it properly:

  • Learn as much as you can about what to expect from a particular therapy before you start. Try to hear a diverse range of views about the particular thing you're wanting to do, preferably from others with your condition. You may not be put off by someone else's bad experience, but it is worth knowing potential drawbacks or risks, just in case.
  • Keep records. Ideally, you want to keep a symptoms and activity diary for a period in advance and then throughout any treatment so that you can consider how things are progressing without having to try to remember exactly how things were a month ago. At the very least you should record the dates of when you’ve started things and any remarkable changes, good or bad days etc in the period that follows.
  • Don't start several things at once. For example, do not take a load of different herbs, change your diet and start doing Yoga all at the same time. Even if this is suggested. If there is any change at all, you’ll have no idea what is responsible.
  • Follow the instructions. Do whatever is necessary to make sure you can do exactly what you’ve been told to do. And stick it out for as long as possible. Although, remember that…
  • Anything which has the power to make you feel better has the power to make you feel worse. Complimentary treatments can have unwanted side-effects and contra-indications like anything else, especially for people who are at a low ebb. What's more, unlike your paracetamol, these treatments are not accompanied by a list of known side-effects. If you begin to feel worse in any way, consider these therapies as suspects that need to be eliminated from your inquiries.
.............
I wanted to list all the things that I have found useful at one time or another, but I think that’ll have to be another post. In the meantime, anyone even mildly interested in matters medical are recommended to check out Charles Dawson's Wilder Shores of Arthritis (which I hope he might add to his sidebar in chronological order for future reference).

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Thursday, June 08, 2006

Household Hint #483

Yesterday I lost my last item of white clothing and have decided to give up wearing the colour altogether.

It was a bra. Odd proportions make bras quite expensive and it was still pristine; whiter than white. It is now mauve. Fortunately, the bathwater in which I was washing a number of delicate items of clothing was a very deep purple, so the colour is quite strong and pretty - it doesn't look like it got dyed accidentally. However, I now have three bras in different shades of purple. Who has three purple bras?

How the bra got in the bath with me, I'm not sure, but it is difficult to keep white bras white anyway. Over time, the colour dulls. Sometimes, they even pick up the colour of other clothes you're wearing. White is not a practical colour for human beings to dress in any circumstance. Other white clothes get stuff spilt on, or get stained by deordourant and all sorts. And they make underwear difficult because they are often almost see-through. What's more, it doesn't look good on pasty-faced Celts such as myself.

Goth acquaintances work with the strategy of wearing nothing but black so it all washes together and can all be machine-dyed together when the colour begins to fade. I can't go that far. Nor can I wear nothing but purple, the colour which I seem to wear more of than anything else for some reason. But I have had enough of white.

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Monday, June 05, 2006

The Return of The Native

I'm back! Apologies for the prolonged absence; I am now back in Whitby, my laptop is apparently working again and all is well in the land of Goldfish. We had a nice break with my parents. The weather was fairly atrocious and we didn't get to meet Marmiteboy after all. Plus my Dad is in a bit of a state. But apart from that, it was all good.

Have a great deal of reading and writing to catch up on. Will take it slowly.

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