Sunday, April 27, 2008

April Aunt Blogging

Alex celebrates having hit a hole in oneCome on, it has been a while since you've seen any gratuitous materteral blogging on here.

Yesterday, I got to see Alexander! I wasn't sure I was going to, on account of the fact that my sister's family all had rotten colds last weekend and frankly, if I hadn't got my pain sorted out, it would have been very difficult. I can't really be trusted to supervise Alex because I have no means of chasing after him; if I was really going to babysit, I'd need a giant net on a very long pole. However, at least with less pain I could pick him up if I needed to and I did manage to push him on the swing, from a sitting position on the grass (this is still a precarious practice, but I reckon the sustained giggling of a small child is worth the risk of being kicked in the head).

Another slice of luck was that the weather was so nice. I think it was warmer yesterday that it had been last August when we were in my folks' garden for his birthday party. Which is especially odd given the weather at this time last month.

My nephew is a cherubAlex still doesn't say much but he has learnt to count! Up to three at least. Mum was playing a game where she was saying "One, two three, hooray!" and Alex imitated her by say "Do, do, do, yeah!" several times over and he never one uttered more or less than three dos . Does that count as counting? I reckon so.

Alexander devised an excellent variation on the game of golf, whereby merely hitting the ball with a club (both lightweight plastic) merits a cheer. This is much more exciting and uses considerably less space than the other version.

Alex in a wheelbarrowHe also participated in the ancient East Anglian tradition of pushing small children about in a wheelbarrow. This originates from the time that women used to give birth out in the fields and wheel their children home sat amongst the turnips. This resulted in many turnips being mistakenly brought up as human children, with one turnip making it so far as becoming Archbishop of Canterbury in 1093. Sorry, but if I don't plump up this paragraph there will be a big gap at the end of my text.

So anyway, it was a very nice day. Alexander is a very bright and happy child who finds amusement in almost everything. Meanwhile, the more disconcerting side-effects to my new pills are already diminishing.

Friday, April 25, 2008

Oops inside my head

A much better week with decidedly less pain. The haze is a challenge, but it is not insurmountable. The biggest issue is one of deception; I am much less able to trust what seems to be going on around me. However, I've been through very similar side-effects before and never been quite so bright with it as I seem to be now. There's drowsiness, but even that is deceptive; it's more like a mist between me and the world as opposed to anything which stops me thinking. I think. There is the possibility that my head is full of nonsense only I haven't realised it.

If I'm honest, I find the side-effects quite interesting. It's not fun; I'm not high. In fact my mood does seem to be swinging about a wee bit. But the mild hallucinatory effects are curious. My brain is basically attempting to fill in the gaps as all brains do all the time - all of us with two eyes have a gap in our visual field which many people never notice (whereas others use it to decapitate people who are irritating us, if they are at the right distance). And beyond this, we use our imaginations to make sense of things. For example, you're not actually registering all the letters in this sentence, but just the shape of the words (unless any are unfamiliar to you). Often when we see something that doesn't make complete sense, our brains make it into something that does.

Just now, my brain is filling in more gaps than actually exist. I believe the thing with the insects is a very common experience; every slight movement registered towards the edge of my visual field becomes an identifiable insect, at least for a second. I imagine most people have experienced thinking they saw a fly or spider when it was probably a flicker or light or a spec of dust on the surface of the eye. Except this is distracting me several times a day. Meanwhile, every bit of noise I'm registering seems to be voices - I'm not hearing voices, but I'm hearing the sound of people talking or singing elsewhere in the house, and there's nobody there.

There must have been a slight change in the smell of the air as I entered the kitchen and I was convinced - as well as somewhat confused and annoyed - that [...] was using glass-cleaner to clean the oven. Glass cleaner is a horrible stinky chemical and my nostrils were full of the stuff. But when I asked, he insisted that he was only using warm water and the smell went away.

Nothing too dramatic, at least not during the day. Nights are another matter. I don't know whether the drugs are causing me to have vivid and traumatic dreams or perhaps I'm happening to have a phase. Trouble is that I wake up a few times every night and I seem to become conscious some minutes before I stop dreaming. This is actually quite frightening if I need the loo; if I stay in bed with these odd things happening around me, then I feel fairly safe - I know I am awake and this is the stuff of dreams. If I get up, then I am very nervous of what I might see or hear; I'm nervous of being startled, of screaming or falling over because of something that isn't there.

After all, there was that dead body on the floor in the dark at the end of my bed. It even felt solid when I kicked it (I confess to having very little respect for the dead when they are inexplicably on my bedroom floor), but then when I knelt down and touched it, it was gone again.

That might sound far more distressing than it was; fact is, if you really did find a dead body on your bedroom floor, confusion would be the initial response. It would probably take some moments before you felt the full horror of the situation and before those moments were over, I had established that it wasn't really there.

On the plus side, I have been able to manipulate these night-time semi-somulant experiences ever so slightly. Just to see if I could, I imagined there was a thick fur rug beside my bed, reached down and drew my fingers through it - and it was, it was fur, very thick, soft and silky to touch (the bedroom carpet is quite the opposite). If I could master control of this stuff it would be seriously cool, but that seems rather unlikely. Most of it is, alas, just filling in the gaps.

Monday, April 21, 2008

The drugs don't work, but these ones might

I've spent this last week hanging on and it's not been easy.
Fortunately, I finally got to see my GP this morning and am rather pleased to report that

(a) I've got some stronger painkillers.
(b) It's not morphine, as I feared might be the next step.
(c) I am being referred to a pain specialist who is "very very good".

My GP is very good and was aware as I am about what these pills might mean. I was in there for about half an hour. She suggested that it is unlikely that the effect of my old pills, the Trammdol, has worn off, but my pain has probably got worse for some reason. On the one hand, this is bad news because it makes the increase in pain mysterious, but on the other hand it means that if, after a little respite my pain decreases, I might be able to go back to the Trammdol and stay on the same stuff for a very long time.

Since I hope to be around for some decades yet, that would be ideal. Otherwise, I'd just be working my way up through the opiates and sooner or later there'd be nothing more I could do. As it is, these ones are likely to wipe me out, my bowel will probably never talk to me again* and it is likely to be a dodgy few weeks.

But generally the situation is positive. I desperately need a break from this level of pain; it's got beyond a point where I'm able to cope with it without my world shrinking right back. And if these pills are truly awful, then maybe I can come off them in a few weeks when I've thought of some brand new super-dooper coping strategy. Either that or my legs spontaneously fall off, which might be more comfortable. Or the pills might not be too bad and things might get better anyway.

* Which might be a good thing. It has got an infantile sense of humour.

Thursday, April 17, 2008

Blogging Against Disablism Day will be on 1st May 2008

Blogging Against Disablism is now underway. Please click here to read entries to to let us know that you have posted.

Blogging Against Disablism Day, May 1st 2008Blogging Against Disablism Day is an annual event in which disabled and non-disabled bloggers throughout the world unite in the cause of equality. On May 1st, bloggers shall write about their experiences, observations and thoughts about disability discrimination (disablism, sometimes ableism) and what we might do about it.

How to take part.

1. Post a comment below to say you intend to join in. I will then add you to the list of participants on the sidebar of this blog.

2. Spread the word by linking to this site, displaying our banner and/ or telling everyone about it. The success of Blogging Against Disablism Day depends entirely on word of mouth.

3. On Thurday, May 1st - or as near to as you are able - post something on the subject of Disabilism, Ableism or Disability Discrimination.. You can write on any subject, specific or general, personal, social or political. In the previous two BADDs, folks have written about all manner of subjects, from discrimination in education and employment, through health care, parenting, family life and relationships, as well as the interaction of disablism with racism and sexism.

4. Come back to Diary of a Goldfish to let everyone know that you've posted and to check out what other people have written.


Naturally, Blogging Against Disablism Day invites contributions from people with all variety of impairments and none at all. You are also welcome to contribute with podcasts, video-blogging or anything else that allows you to take part. And whilst May 1st is when this all takes place, nobody who happens to have a bad day that Thursday is going to be left out of the archive.

I am not an expert on web accessibility, so if there are any suggestions, please e-mail me at diaryofagoldfish at

The Linguistic Amnesty

Whilst discussions about language and the way it can be used to oppress or empower us are more than welcome, I do always ask everyone to bear in mind that there is huge variation in the way that disabled people describe themselves - there are even different terms for this thing I call disablism (if you prefer to use another term, please do so). There are personal preferences, cultural variations as well as different political positions people have taken on this stuff. This year I have written a basic guide to the Language of Disability which I hope might explain some of the thinking behind the terms people use.

Links & Banners

To link back to this post, simply copy and paste the following code:

Due to ongoing computer problems, I have no means of editing images. However, last year's banner seemed popular, and I've noticed several people who weren't blogging last May adopt the banner for their sidebar during the year. If anyone fancies playing with these images or coming up with something new, please feel free to do so.

If you already have the banner, you just need to change the URL that it links to. Otherwise, you simply need to copy the contents of one of these boxes and paste it on your blog, in a post or on the sidebar as you like. The banners come in two colour combinations and two sizes. The sizes are a 206 pixels square or 150 x 200 pixels.

Blogging Against Disablism DayThis is the black and white banner which reads "Blogging Against Disablism". Here's the code for the square one:

And here's the code for the narrower one (which can be seen here):

Blogging Against Disablism Day,This is the colourful banner which reads "Blogging Against Disablism". This is the code for the square one:

And here's the code for the narrower one (which can be seen here):

Please leave a comment to let everyone know you are joining in and I shall add a link to your blog on the sidebar. Also, if you have any questions, do ask.

Tuesday, April 15, 2008

The Language of Disability

I'm hoping to organise a third Blogging Against Disablism Day this May 1st. Shortly before the first BADD, I wrote a Brief Guide to the Language of Disability which was very brief indeed. I thought it was about time I made a more comprehensive effort, although this is just me explaining the different terms as I understand them and may not be all that comprehensive. Where I express my opinion (which I'm going to), I don't pretend to speak for anyone else.

Whilst I frequently harp on about language and its importance, I am always alarmed when discussions come to a standstill over a simple word or phrase. This is why each Blogging Against Disablism Day I have asked for a Language Amnesty; discussions of language are welcome, but we need to bear in mind that we're all coming from different places (quite literally).

Whether language is correct or incorrect depends entirely on what the speaker means to say. So the language of disability hinges on what people understand disability to be. The main controversy being

Disabled Person vs. Person with Disabilities

The preferred term generally hinges to on (a) geography, (b) identity politics and (c) a person's particular medical condition or impairment. And, unsurprisingly, a person's identity politics is likely to be influenced by both geography and their particular medical condition or impairment.

Alexander Pope was described as a hunchback and a crippleIn the United States and Canada, person with disabilities or person with a disability is generally preferred. There, disability has been traditionally understood as something that is wrong with an individual; a medical condition, an illness, an injury, a sensory or intellectual impairment. For this reason, there are groups of people who wish to divorce themselves from the label. Some Americans with autism or deafness, for example, argue that their condition is not a disability, because they do not perceive it as any kind of problem.

Because disability is something that belongs entirely to the individual, it is correct to use this "people first" language. In this context, the difference between person with disabilities and disabled person is a bit like the difference between vase with a break and broken vase. It is also far more appropriate, for example, to describe someone as a person with depression than a depressive person. Since depression (or any other condition) might be the disability in this context, person with a disability makes total sense.

In the United Kingdom, disabled person is more often preferred. Whilst not everyone understands or agrees with the politics, the reason this term has been advocated is because of a way of understanding disability called The Social Model of Disability. This asserts that there is a difference between those limitations we experience because of medical conditions, injuries and impairments and those limitations we experience because of the artificial social and physical barriers we experience in society. Only this latter group of limitations may be called disability; it is, after all, the only thing that we all have in common and the only thing we have any hope of changing.

Many people agree that the limitations that disabled people face arise from these two different sources, but this use of language remains somewhat radical, even thirty years after its conception. What people tend to hear is "It's all society's fault and if there were only a few more ramps about, we wouldn't have any problems."

There will always be some people who have difficulty doing some things, and some of us will always have unpleasant physical, cogntive and emotional symptoms to contend with however society might improve. However, people who take this position simply don't call those problems disability. And because disability is something people experience as opposed to something that belongs to them, "disabled person" is preferred. It is a political status, very much like queer or black. And as with those terms, a small minority of people prefer to use a capital D.

It should be noted that not all British disabled people know of, let alone understand or subscribe to the Social Model, and of course most disability activists and academics in the rest of the English speaking world are well acquainted with these ideas at this point. Many people use both terms at different times. But that's your basic difference between the two terms, as I understand it.

Other Terms for Disabled People

Often attempts are made to take the sting out of the concept of disability. Dis- is, after all, a negative prefix and disabled is often used in other contexts, such as computing and electronics, to indicate that something is completely non-functioning. What's more, because of our negative cultural attitudes towards disability and disabled people, some people just don't want to fall under that label. Some people argue that if society sees disabled people as useless and dependent, then the solution is to use another term. We should "see the ability, not the disability". Others even argue that "disability is a state of mind".

Personally, I don't see a problem with the negative term; whilst it is by no means the worst thing that can happen to a person, disability is a disadvantage. However, several attempts have been made to find a neutral or even a more positive way of describing our situation. Most of these are euphemistic, with the rather odd exception of handicapped.

Handicapped / People with Handicaps

Lord Byron was described as being lameHandicapped has a very bad name in the UK, and seems to be losing popularity elsewhere. Part of this is due to the myth that handicapped comes from begging, "cap-in-hand", from a time where the only conspicuous disabled people had to beg for a living.

This isn't true. "Handicap" is a common word in horse-racing, golf and other sports and originates from a medieval gambling game "hand-in-cap" which involved drawing lots. There is a full explanation in the 1911 Encycopedia Brittanica, composed before handicap was first used in the context of disability.

Some people who take objection to words beginning with D, see handicapped as a positive label. In sports, a handicap is a disadvantage imposed on a superior competitor in order to make it a fairer game or race. So if we are handicapped, well maybe we're just brilliant and this is the universe's way of leveling things up for everyone else. A fanciful but undoubtedly positive notion.

Unfortunately, experience has put me off this term. Because it fell out of favour long ago, sensitive people don't tend to use it, regardless of whether they understand the objections against it or the etymological arguments. I'm afraid its usage has been accompanied by ignorance and prejudice often enough that I cringe every time I read or hear it. Which is a shame.

Modern Euphemisms for Disability

Florence Nightingale was described as an invalidThere are a number of euphemisms used when talking about disability, especially - though not exclusively - where disabled children are involved. This is understandable; if the world sees disabled as broken, useless, then children with this label are in danger of growing up with some pretty negative ideas about themselves. Many parents and educators try to protect them from this with more innocuous language.

I have great sympathy with this, but I'm doubtful about its effectiveness. When someone is determined not to say what they really mean, they don't always notice what they're really saying. So to speak.


Some disabled people's abilities are in no way inferior to those of their non-disabled counterparts, but merely different. The wonderful Institute for the Study of the Neurologically Typical demonstrates rather brilliantly.

Unfortunately, so long as different is perceived as an issue, it is a disadvantage. Imagine if someone described people who weren't white as differently-coloured or people who weren't men as differently-gendered. This is by no means neutral language.

And that's only if we give the phrase the benefit of the doubt. If we take it literally, everybody is differently-abled and the phrase means nothing at all.

Physically Challenged, Intellectually Challenged etc.

The language of challenges has often been used to replace language which was felt to condemn. For example, replacing delinquency with challenging behaviour, or poverty with economic challenges. Yes, I know it is a common tool of the fork-tongued, but it's not always complete nonsense.

However, our impairments are not challenges. A challenge is necessarily something which may be overcome, whereas the status of our bodies and brains is pretty much immovable. These terms also nod to the triumph over adversity narrative which is as problematic a stereotype as anything that disabled ever threw up.

Special, Handicapable etc.

These terms go beyond an attempt at neutrality and try to make disability something positive. I've never actually heard a real person use the word handicapable out loud, but it is used. Special, meanwhile, is widely used, particularly in education. Special Educational Needs can encompass a massive range of impairments, from severe intellectual impairments to mobility impairments.

Seahorse wrote an excellent piece about special and the way that teachers and non-disabled children can react to this label. Also on the BBC Ouch Blog, Nicola has also written about the way teachers reacted to her, destroying her confidence with the best of intentions.

The word itself doesn't cause this patronising, sometimes exoticising attitude towards disabled people, but it undoubtedly backs it up. I'm afraid I have little good to say about this word and similar variations on the sentiment, but then I guess that being regarded as special and being regarded as equal are mutually exclusive.

Toulouse Lautrec was described as a midget (although he was over five foot tall)Reclaimed Terms

Informally, many disabled people refer to themselves and one another using terms which have historically been used to insult, oppress and patronise them. The main two examples are gimp which gives me images of black patent leather and chains but is very popular in the US and crip from cripple. Other examples include freak, mutant and more impairment-specific terms like nutter and spaz.

Many disabled people, having had a period of coming to terms with their disabled identity, have a phase of using these words a lot, reveling in both the act of subversion and the sense of group-identity they provide. However, others are genuinely upset by them, especially those with raw memories of these words being used in malice. I tend to the view that as with all humour (because this is largely about humour and fairly dark humour at that), there's a time and a place.

Incidentally, I also wrote a guide to what we call them others (those who are not disabled) some time ago on the Ouch Blog, although I fear the debate was concluded when JackP suggested disability-challenged.

Saturday, April 12, 2008

Lessons in...

So the pain gets worse and you wait. There are always bad spells and this could be just one of them, just today, just these few days, maybe just this week. And maybe you have acquired some bad habits which have made things worse, so you test that theory, make sure you are doing all the right things; not too much, not too little. But that makes no difference and things get worse.

Maybe you are more conscious of the pain just now? There's no reason why this would be the case; you're not anxious or feeling sorry for yourself. Maybe your brain is working better and without knowing it, you're actually moving about an awful lot more than you were before? This seems unlikely.

It's probably the tablets. It could be that after all this time, your nervous system has simply grown accustomed to the tablets. The only solution to which would be more tablets, stronger tablets, nastier tablets. You like these ones; they work for you. They used to work.

It is a lonely crisis. You don't know what to do and when and anyone else has even less of an idea. Nobody can know what it feels like, how bad it is, whether or not this is too much to bear. It's bad but you don't feel awful. It is only pain. But it's interfering with the business of life, so you're beginning to feel worse in other ways.

It all gets a little melodramatic. You start using alcohol, which is forbidden, in order to relax the muscles, in order to sleep. Only a little alcohol and it probably isn't dangerous, but this is truly ridiculous behaviour on the part of someone who hasn't even made an appointment to see the doctor about it.

So you phone up to make a doctor's appointment. The soonest they can give you is three weeks away. Panic. Three weeks. You make the appointment but when you come off the phone you say out loud, "I don't think I can last three weeks!"

"Well phone them back and tell them," [...] suggests.

"I don't need an emergency appointment," you lamely reply. "It's not an emergency. And anyway, I wouldn't get to see my doctor and I would have to explain everything to a stranger and they might be reluctant to change my medication."

So then [...] takes the phone and calls them back. He joins in the melodrama by declaring, "My wife is in a state!"

You weren't in a state, but listening to someone else explain your desperate situation - which you hadn't identified as desperate before this point - sets off the waterworks.

A while later, the doctor phones back. Your doctor is very nice. She arranges an appointment for Monday. In the meantime, she says you must take more pills. You take more pills and feel a bit better, if a little stoned. Sleep comes after you have lain awake listing, out loud, all the English place-names beginning with a B. It is a long list, but in the morning it occurs to you that you forgot about Bolton.

After all this time, and after all this experience, you'd think you would be able to look after yourself a bit better than this.

Wednesday, April 09, 2008

Oh! de Toillette

Titian'sI had to moan about something or else I'd moan about the pain. Life is really very good at the moment, but I'm frustrated today so there.

I'm really fed up with washing. It uses up more energy than any other activity and I am very precious about doing it by myself. On occasions when help has been essential, I have absolutely loathed it. I realise people get used to far more intimate assistance, but still.

Of course, the first thing you learn when you have difficulty washing is that it doesn't matter as much as you imagined. In our culture, we're taught that daily washing is hygienic, sweating is unhygienic and we all ought to smell like rose-bushes as opposed to human beings.

In reality, the only important things are clean hands and clean teeth; proper hand-washing saves lives and thorough teeth-brushing saves your teeth falling out. If you never ever wash your body or your clothes and you live in unsanitary conditions, then there are other health risks and a significant pong. But no great harm can come to you if you don't bathe for a few weeks.

The second thing you learn is that the more you wash, the more you need to. This is partly psychological; we've all got an idea of what it feels like to be clean, and for some people the only satisfactory state is the one they experience between getting out of the shower and the point they start moving about again. I know at least one relatively inactive person who showers twice a day, so appalled is she by the experience of sweating.

Venus at her toilet by the Fountainbleu SchoolAdded to this is biology. I'm not about to assert that washing is bad for anyone, and cosmetic companies make much of the creation of "imbalances" which only their products can put right. However, it is possible to wash so much that your sebaceous glands begin to over-compensate for the lack of moisture in your skin. What's more, many of the skin conditions association with a poor immune system - eczema, acne, fungal infections - are aggravated by vigorous washing and cosmetic products. So people who wash very often are more likely to experience itching than those who wash more rarely. I don't use soap at all, and whilst my skin is pretty crap, it is better than it used to be.

All this having said, I do want to be clean. I don't mind not washing every day. But I don't know, twice a week would be nice. Perhaps twice a week which didn't actually involve dedicating all the energy of two whole days to the act of simply keeping clean.

I have explored other ways of doing this. Unfortunately, it all seems to be a matter of replacing the water bit with tremendous physical vigour. You can apparently wash by rubbing yourself down with coarse salt or porridge (well, the recipe I've seen isn't described as porridge but it is dominated by the same ingredients). In parts of the world where warm water is not readily available folks use sand, dirt and even smoke to get clean. Perhaps that's the thing; every time I burn the toast I should take all my clothes off and keep the kitchen windows closed.

Tuesday, April 01, 2008

A Posthumous Cosmetic Dilemma

I am rather pleased of my picture of Grandad Kelly. I had to abandon my first attempt entirely and briefly worried that, because he has been dead for five years and I have no large or digital photographs, I may have forgotten what he looked like. As it is, this is what he looked like. Roughly

My Paternal GrandadI had and still have a bit of a dilemma about this painting. Grandad has something which I understand to have been a type of skin cancer which had to be regularly treated but never caused any harm besides a permanent red make. on the bridge of his nose. I wasn't sure whether to pretend it wasn't there. In the end I decided to put it in, and to be honest it does look somewhat less prominent on the actual picture than it does on the screen - at least on my screen.

But what do you think? I had a similar issue with the mole of my friend Vic who I'm painting, but I spoke to Vic about it and we decided it was best left in. Grandad's cancer or ulcer or whatever you call it is another issue; it's not nearly so becoming as Vic's mole, but it was part of what he looked like. Does it stand out a mile? Does it look like an accident?

It is an emotional business painting dead people. I also wonder what my Granny Kelly will make of the picture when she sees it. They had an excellent marriage for just short of sixty years; in the original photo I used to paint him, he had his arm around her.

Unfortunately, my pain has crept up a lot in the last few weeks and I have been temporarily banned from sitting the chair that I use for painting. I'm not sure that'll make any difference but the pain is beginning to become a real problem again and I'm prepared to try a few things before resorting to harder drugs.