Thursday, May 25, 2006

Fire, de de de deh.

We are now in sunny Suffolk, not only having safely arrived without the use of watering cans, but, having entered a wormhole somewhere on the A1, we lost an hour off the normal journey time and strangest of all, ten miles off the normal distance. We took exactly the same route, usual number of breaks for the loo and petrol and it wasn't that we didn't meet the usual tractors on the moors and heavier traffic on the A roads.

As nobody was about when we got here, we made a big fire and burnt all our unwanted personal paperwork. This was strangely thrilling. Well, I guess not so strangely; burning stuff is very therapeutic. Paper, I mean. In a hearth. All in a very controlled and reasonable manner, you understand.

Highlights included writing cheques out in an old cheque book for ridiculous sums of money then setting them on fire. And my old diaries; I don't know quite why I felt so immensely relieved to see them destroyed. It is not as if I imagined anyone else would be desperate to read them or even that I would be mortified if they did.

Since then we have mostly been sleeping and resting. But it is really nice being here. Visiting my folks house is like being on holiday these days. It is really very quiet out here and we're surrounded by trees and greeniness. There are all sorts of exotic birds about, i.e birds which are not seagulls. The local church bells strike the hour, which is rather lovely and my folks have a shower. Imagine, a shower! And the fire. Well you really can sit for hours watching that. Unfortunately, I am a poor pyromaniac and it keeps dying down whilst under my supervision..

Monday, May 22, 2006

Films I have watched and not liked much

I am feeling much better today and am really very excited about travelling down south to see the Aged Parents on Wednesday. I am planning on making a cake for [...] birthday which on Sunday. I can’t normally cook at all, but Mum has promised to help. It is going to be a Black Forest Gateau, which translates into my second favourite German word Schwarzwaldkirschtorte (my most favourite German word, since you ask, is Gespensterheuschrecke which means stick insect).

I have been watching a series of very disappointing movies during my dip. I may include spoilers so be warned.

The new King Kong is a disgrace, it could have been really camp and fun and it was painfully long, boring and made little attempt to address the racist undertones of the original story. The stop-motion animation of the original is amusing now but it creates far more genuine suspense than what these guys have done with the CGI. I mean, just because it is possible to havea giant gorilla fighting three dinosaurs at once whilst holding damsel in distress in his fist, doesn’t mean it is convincing to watch. For a superior remake, check out Angry Alien.

Batman Begins (one has craving for comic book heroes from time to time) took itself terribly seriously and therefore reached new, as yet unexplored, depths of cheesiness. And they cast Gary Oldman as good everyman type character. Now, I’m not arguing for typecasting, but when you are making a Batman Movie, is it the right moment to challenge expectations? So one sits through this entire film expecting him to tear off his peachy face and reveal himself to be bright green underneath. He doesn't.

Crash<, having won Best Picture at the Oscars was a greater disappointment. It was beautifully made and terribly worthy, I know, but I felt it failed as a movie. It was just one lot of unpleasantness and tension, followed by a partial, usually unsatisfactory resolution, followed my another set of unpleasantness and tension involving a completely different set of characters. No central narrative, and whilst it illustrates the fact that racism is a complex, sometimes subtle and multidimensional thing, nobody who had the stamina to sit through the film needed to be told that.

It would have made for a better film if it had followed the stories of one or two characters rather than a dozen, each of whom we were required to make quite an investment in within a very short space of time. It would have made for a better film had it included some suggestion as to how this human misery could be resolved; instead it actually suggested that whilst racism is not the exclusive domain of monsters, there’s not a lot that can be done about it.

In fairness, I was having a bad day, it was exhausting to watch so all my negative feeling may have been greatly exaggerated by the sense of having wasted my time and energy. Perhaps what was most meritous about Crash was the fact that it wasn't about the sort of America we see all the time in the movies, where everyone lives in vast houses, is either a hero or a villain, and where people of different race and varying socio-economic status either rub along very nicely or exaggerate the differences to comic effect. The fact that guns were everywhere was demonstrated as the Very Bad Thing that it clearly is, which is unusual for an American film.

On a positive note, the only really good thing we have seen lately is the new series of Doctor Who as kindly recorded by friend Aunty Vic (her nephew was born yesterday). David Tennant rocks. A bit too much of the touchy-feelies so far, but otherwise it is brilliant.

Oh and in bloggings, there is this great new blog written by an enigma.

Saturday, May 20, 2006

The Big Sleep

I have developed the capacity and the compulsion to sleep for fourteen, sometimes sixteen hours a day. Much less time on my hands. This happened for periods in the autumn, but is quite a novelty for this time of the year where I haven't seen darkness all week.

There are some advantages:
  • Sleep isn't subjective; when one is unconscious, one doesn't spend too much time worrying about what might be achieved if one made a little more effort.
  • The body is far more comfortable when asleep and rather more comfortable having been asleep for most of the day.
  • Being unable to resist sleep is far better than being unable to sleep when one needs to.
  • The nightmares are getting easier to manage.
  • I'm not missing the laptop as much as I would otherwise.
There is, of course, a downside:
  • Time is passing at a tremendous speed; my days are literally half the length of those for folks who only need eight hours sleep in any twenty-four period.
  • It isn't following a strong pattern which allows me to know how long I'm going to stay awake for in between times. This is playing hell with my powers of organisation.
  • For some reason, I am feeling incredibly hungry. The effort of eating tends to send me off to sleep again. Thus my appetite and food intake has increased at a time when I am (presumably) burning off even less than usual.
And of course, all this means I am ill ill just now, being strangled by my lymph nodes and feeling weak and feeble as well as the everyday efftects of ouchy-slouchy-grouchy syndrome. Still, it is all right. A few weeks ago I was being awake in the middle of the night and this is much better. Just hope it stabilises before we go down south.

Apologies to all those to whom I owe e-mail; I'll get to it but now I need to go sleep again.

Wednesday, May 17, 2006


Yesterday we went to the computer shop. It looks like the laptop will be okay, but it will be a few days yet. I am suffering such hardships such as listening to radio programmes according to someone else's schedule, listening to entire albums with songs in the order they were designed to be played and watching films using a television set. But most of all I am missing being able to work and write and to read blogs and e-mails for more than a few minutes at a time.

At the computer shop, [...] and the computer chap got into a discussion about their early computers, reminiscent of the Four Yorkshiremen sketch, except with one Yorkshireman and one Lanacastrian, each trying to out-do the other with how large, cumbersome, expensive and inefficient their early computers had been. One expected it to conclude, “Luxury! When I were a lad, we had to put our e-mails on paper and place them in t’ letterbox at end of road.”

It actually concluded, “The very first computer I worked with were an IBM, the size o’ this room with 16K ferrite core memory, worth millions of pounds and ’twas that machine that we used to detect any incoming missiles from Russia.”

Honestly. And I unwisely joked that I remembered when they all worked through a system of levers and pulleys, inadvertently prompting a discussion of adding machines, which descended into despair about how young people can’t add VAT without a calculator. I wasn’t sure if I was a young person in this context as on all but the foggiest of days I can do VAT in my head (if you didn't know, you shift the decimal place to find ten percent, half that amount to find five, half it again to find two and a half percent and then add these three amounts together to make 17.5%).

The countryside was very colourful, the sea was very blue so I got a nice trip out by way of compensation for my laptoplessness (is that five this year? I think so). There were even surfers at Scarborough - or at least young men in wetsuits with surfboards, I think you need big waves for the activity to qualify as surfing. On the way home we saw half a dozen deer, the speckly type which I believe are fallow deer (the latin name for which is apparently dama dama dama - obviously one of them shat on a Roman’s sandal once over).

Monday, May 15, 2006

The day the laptop died

My laptop has died! I am going to try and take it to the computer hospital tomorrow and see if it can be sewn back together, but it may be some days. As it is I have managed to redirect my e-mail, but my e-mail address book is trapped on the other machine. Also, UK2, through whom I have redirected my mail, seem to be playing up, such thatI haven’t actually received any e-mail all day which would be unusual for given all the advertising I am usually subject to.

I am rather lost without my machine and I can’t sit at the desktop for very long at all. Also, I am quite sure that computer technicians spend most of the day browsing through their clients’ computers, looking for dirty pictures and secrets. So naturally they are going to fix my computer and then spend the next few days reading my novel. And they will all be giggling when I come to pick the computer up.

What is worse, I had the volume on full last time it shut down. I shouldn’t confess this, but when my computer fires up it says, “Welcome to my underground lair” as said by Dr Evil in Austin Powers and then when it shuts down it says… no, nevermind.

Never mind, I shall be quiet for a while, but I'll soon be back.

Sunday, May 14, 2006

The Butterfly Effect

I finished Tinker’s mobile. There are thirty butterflies, two different sizes. The butterflies were already cut out in plywood. I have no idea what I originally bought them or the bamboo hoops for, but I know the two projects were not connected.

I asked [...] whether he thought Tinker would appreciate any of the things I have made for him or her or whether he or she will even know that I exist. [...] says that Tinker will develop profound lepidopterophobia and require extensive psychotherapy, during which he or she will have lengthy and in-depth conversations about his or her Auntie Goldfish. So he or she will definitely know I exist.

If you have been affected by any of the issues raised in this blog entry you may want to check out I Hate Butterflies, where you can even purchase t-shirts stating that Moths Suck. Amazing.

"I don't stab myself in the head very often!"

I found myself exclaiming. I hadn’t actually stabbed myself in the head, but created a superficial yet conspicuous scratch on my forehead. With a kitchen knife. I don’t know quite what happened, I was cutting up an apple at the time. I also have a more substantial cut on my finger from the same process, although I had acquired that a moment earlier. Certainly no intent.

Fatigue is far worse to deal with than pain. Real full-on fatigue which attacks your very essence. I think therefore I am; I can’t think therefore I am not. There are automatic processes, going to the loo when one’s bladder is full, washing and drying hands afterwards, this sort of thing. These remain pretty much intact, although evidently those interruptions that occur can be dangerous when one has a knife in one’s hand or is working with heat or water.

And it is miserable. Not my head, which doesn’t hurt at all and will have healed up completely before we visit my parents and I have to make excuses (the black eye sustained in similarly bizarre circumstances close to my twenty-first birthday invited some suspicion). But on the inside, having no mind. Which is of course a slight exaggeration, but I might as well have for what's left during such periods.

That particular period has obviously passed now, thus my ability to operate a computer, string sentences together etc. And it is only ever a short time, really; a few hours usually, a few days at most. But it is the worst thing. By far.

Wednesday, May 10, 2006

Mrs L and the Jellyfish

I had a crap day, and for the last five hours I’ve trying to get to sleep but keep remembering last night’s nightmare. So I have got out of bed to blog about my profound guilt and Mrs L.

Mrs L was our English teacher for the first year at high school. She was one of the few people I have ever known about whom I would use the term sweet-natured. She was a small lady and the sort of person who would do anything for anyone, but in a rather naïve, unknowing kind of way like she had more compassion than sense. The sort of teacher you would feel guilty about mocking in her absence – a rare thing indeed. Later on she developed MS, which kind of aggravated this air of vulnerability.

During the first term at high school, I was flattened by the schedule and volume of prep. We had to catch a bus at half past seven in the morning and didn’t get back home until five. Then there were two or three hours homework to do. It was not easy when you've been used to being able to walk to and from school and be home before it got dark in the winter.

We had this novel to read, I can’t remember the name. It was set in Victorian London and the main character was a boy called Smith, in case that rings any bells. It was rather boring and I gave up a third of the way in, so when we had to write comprehension pieces I merely scanned through the text to find the relevant information as I need to refer to it. And I got an A+ and Mrs L applauded how thoroughly I had obviously read the book. She had actually used the word thoroughly in writing on my paper and then said it out loud as she handed it to me.

I felt so guilty that I almost confessed on the spot.

The second reason I feel guilty about Mrs L is because she really liked me in a way I didn’t deserve. She was so incredibly nice and thought I was too. I know I’m a bit nice, but not nice
nice, like someone who wouldn’t ever swear or tell a dirty joke. This was of course my child’s perception and I may have been completely wrong. She may have been a quite ordinary person herself.

The third reason I feel guilty about Mrs L is because later on she took over the Religious Education department and when I was hoping to come back to school and take A-Levels, she declared that she would willingly put on a RE A-Level course and teach it even if I was the only person taking it (which of course, I would be, because I was the only person on Earth who would consider taking an RE A-Level).

And so I feel guilty that I wasn’t able to do the RE A-Level, Mrs L had no excuse to teach it and thus I effectively condemned her to continue teaching RE exclusively to people who had not chosen to be there and weren’t really interested in the Five Pillars of Islam and all that jazz.

So this is why, ten years since I last set eyes on the woman, I had a nasty dream about Mrs L and a jellyfish. I can’t actually describe it in detail as, even though I remember it in detail. It didn’t make sense and is quite possibly beyond words. But it wasn’t very nice. And it involved a jellyfish.

Hopefully I have now exorcised that demon and I will be able to sleep.

Monday, May 08, 2006

Every girl knows about the punctual blues

This may be considered a LADIES ONLY post which I am consciously tucking out of the way. This is going to be a bit explicit and gory in places, so also unsuitable for those who have just eaten or are just about to.

I am not in the habit of blogging about menstruation and the like, but I am really rather enthused about this and if it can make a difference to other women and the environment, it is worth grossing out anyone who didn't heed my warning.

All environmentally-conscious women of child-bearing age should be made aware of the Mooncup. It can also be bought as the Keeper (here's a US site). However, it was the Mooncup I have tried so the Mooncup I am talking about.

The Mooncup is a sort of sanitary device for dealing with your period. It is soft silicone cup that you fold up and insert. It opens out and fully blocks off the canal – a bit like a diaphragm (I imagine, never used one), but not nearly so far up. Blood then collects in the cup. Every now and again you remove it, rinse it out and pop it back in. In between periods you sterilise the thing by boiling it for five minutes.

  • The major advantage of the mooncup is that it is extremely effective. I tried it because of the environmental issue, but I have heavy periods which have always been difficult to deal with and this really works. It doesn't leak at all even overnight.

  • It is of course, completely environmentally friendly. No waste whatsoever.

  • Greatly reduced expense. £17.99 is a lot to pay for a bit of silicone, but that’s about six months of Tampax and it is supposed to last for several years. You don’t need to worry about keep tampons or towels in stock or carrying them around with you.

  • It is healthy. The cup is non-absorbent so it doesn’t do you any harm when your period is light. It hasn't been bleached. It is also a much more hostile environment for things like thrush than a blood-soaked tampon or towel.

  • It is comfortable and discrete. You could prance around naked if you so chose and nobody would know that you had the painters in. And whilst you’re not usually conscious of tampons or towels, there’s nothing involved with the mooncup with even the potential to irritate.

  • The whole thing seems more hygienic to me. The only blood that gets on the outside is a dot or two that escapes in the process of removing the cup (which you do sat on the loo anyway). All the blood goes straight down the drain, but not accompanied by anything that’s going to block it up.

  • The major disadvantage of the mooncup is the necessity for hands-on application. Apparently menstrual cups became available at the same time tampons did, only tampons were produced with cardboard applicators (yet more waste). When I told a close friend about the Mooncup, she thought the idea disgusting because of the amount of contact one would have to have with one’s own genital area. All sorts of things can be said about this, but the Mooncup is probably not the place to start to try and change such a point of view. If you were so revolted, you’d never get it inside you.

  • In fairness, it is a little trickier than using tampons, especially to begin with. There’s a bit of a knack and it can take a few moments to remove and re-insert.

  • It does require some co-ordination, the ability to reach down there, etc.. Long fingernails are not recommended.

  • If you had to use it in a crowded public bathroom, you’d probably need to carry a bottle of water and rinse the thing out down the loo. So perhaps not altogether practical in all circumstances.

  • Some people may find it more gruesome to see their partially coagulated blood as liquid in a cup than to see it absorbed into bleached white wadding. Personally, I found the opposite.

Strikes me that the only reason we're not all using these things is that this method of sanitary protection does not make great commercial sense; why encourage women to buy something as a one-off purchase when you can persuade them to buy stuff every month?

And if you think I'm a bit odd for enthusing so much about such a product, check out the Testimonials Page on the Mooncup website which includes the suggestion, "the actual moncup itself looks kind of scary and medical and we think they should come in different colours and maybe with sparkles." Hmm...

Sunday, May 07, 2006

Learning from each other's knowing

Should make a special mention of the super cool Nasty Girls who did blog against disablism but whose contribution I only discovered this morning. Read The Cyber Sapphic Café at the Edge of the Universe

Catching up with blogs, I read Sage’s thoughts on the sexual abstinence posters at her daughter’s prospective middle-school, which triggered a memory. Thankfully, abstinence is an argument rarely heard in the UK; out of all the people I know, from all the generations and denominations, there has been just one couple who waited until their arrangement was legally binding. However, we did get a chap come into school from one of the Christian youth organisations – I want to say it was the YMCA but I don’t think it was.

Now this chap was okay, but started with the usual cringe-worthy appeal to be treated like a mate as opposed to a figure of authority, and we obligingly walked all over him. He was a young man but balding and said we could call him whatever we liked, joking that we could even call him Slaphead if we so chose. Ha ha, we said and addressed him Slapper from there on in.

As a demonstration, he took two pieces of paper and glued them together. We then had to attempt to separate the two pieces of paper. Which was, of course, quite impossible; one or both of the pieces of paper would tear, leaving bits of itself stuck to the other.

This chap explained that this is why he felt that it was best not to have sex before marriage. Like the paper, once you make a meaningful connection with someone, one cannot simply make a clean break without having sustained some damage.

A certain limerick came immediately to mind;

A pleasant young couple named Kelly,
Now walk around belly to belly.
Because once, in their haste
They used library paste
Instead of petroleum jelly.

I did like the analogy though and I still do. However, it occurred to me even at the time that I may have lots of little tiny tears and scraps of other pieces of paper on me but I didn’t have sex with any of the people who they belong to. More's the pity.

Wednesday, May 03, 2006

Blogging Against Disablism Day

I am replacing the May 1st post with this one as this space has already got so many links to it and will the place folks are most likely to come back to.

Thank you very much to everyone for your contributions and comments on Blogging Against Disablism Day.

Some people to thank in particular. Lady Bracknell has been an absolute rock through this, she advised me about revisions to my original idea, helped spread the word to BBC Ouch, wrote the inspiring One In Seven and took on half the work in the last few days, reading and catergorising blogs.

Both BBC Ouch and Ragged Edge have given us loads of support and exposure. Several bloggers helped spread the word through the blogosphere, on forums and through other contacts.

Writing on a set subject on a specified day isn't always easy for people with restrictive impairments and/ or work schedules so I realise that many people had to juggle things around or push themselves especially hard to contribute. So thanks very much to them.

I also realised that having this event on a single day meant that some people, such as Bookgirl were not able to contribute as they would have liked. That is certainly something which must be thought about in the future.

Lady Bracknell and I intended to do a summing-up exercise, where we discussed the various subjects raised. However, given the vast quantity and high quality of posts, it would take us an amount of time and energy which we simply don't have in order to do justice to such a task.

It would also be immensely difficult to talk about highlights. A number of bloggers have reflected on their own favourite posts. I gave a short list to Crippled Monkey which I hoped emphasised the wide variety of topics covered. However, there were so many excellent posts, some funny or fascinating, others inspiring and some deeply moving, each powerful for very different reasons. It doesn't seem fair, as hosts of the event, to discuss favourites at the risk of missing anyone out.

Everybody who participated will have made a difference. In fact, could it be a coincidence that it was on May 1st that Blogger installed Audio Verification alongside the Word Verification on the commenting facility? Well, you never know.

However, instead of a lengthy write-up, we have attempted to roughly catergorise the posts and used permanent links so that folks can refer back to this in the future.

It was quite a task to categorise everybody. Obviously, some people touched on more than one subject, so these categories are approximate. I shall almost certainly do some shuffling around as I read over some of these posts a second time, so do bear with me if it doesn't make perfect sense just yet.

However if anybody spots an obvious mistake or an omission, don't hestitate to speak up.

Thanks very much to everyone.

Blogging Against Disablism Day 2006
List of Participating Blogs

Aw Diddums
Crip Chronicles
Everyone Else Has a Blog
A Lot of Stuff And Nonsense From Electech
Living w/MS & Muttin/Jeff
Marcelle P's Writing Blog
Processing In Parts
Slightly Angry Man
Zeteo Ton Ergaton

Access Issues (outside employment)
My Amusement Park
All That Comes With It
Blogging Mone
Do Your Worst
Flooded Lizard Kingdom
Is This What You Meant?
Lisy Babe's Blog
Perpetual Beginner
Persephone's Box
Star Watcher's Spot

Definition and Analysis of Disablism
Billie's Diary
Capitalism Bad, Tree Pretty
The Perorations of Lady Bracknell
Rachel's Tavern
Ragged Edge
Smiffy's Place
A Wandering Mind

The Language of Disablism
Abnormal Diversity
Cheaper than Therapy
Cheaper than Therapy (another one)
Cynical Chatter from The Underworld
Incurable Hippie's Musings and Rants
Pagey's Place
Quaker Agitator

Disablism Interacting with Other 'Isms'
Alice In Blunderland
Disability Studies, Temple U
Immitation of Life
Jay Sennett Jaywalks
The Long Term Care Blog
A Letter To My Children
The Summer of a Dormouse
Wheelchair Dancer

Disablism in Literature and Culture
Alas, a Blog
James Medhurt's Blog
Meanderings of a Politically Incorrect Crip
The Memory Hole

Experiences Through Family and Friends
Do You Speak English?
Happy Feminist
Midwestern Transport
War Zone and The Sanctuary

Miscellaneous Personal Experiences
Gum Chewing Freak
Housing OT
Info Pimp
Peace, Love and Fun with Klingon Painsticks
Listen Most Attentively
One Can Dream
The Rettdevil's Rants
Woman in Comfy Shoes

Parenting Issues
Bad Mama
Dream Mom
Emma & Co
It's A Wonderful Life
Michael Bérubé's "Web" "Log"
Sara Skates


Autism Vox
Head First In The Deep End
Ill-Informed Ramblings of A Cripple
Missing JT Snow (cross-posted at Jenelle's Journey)
Kosketa Minua, Älä Käsilläsi
Marmite Boy on Toast
Rhonda's Ruminations
Saving Grace
The Word Cage

Disablism within Healthcare Systems
The Gimp Parade
The Life and Times of Emma
The Mote In The Light
Nickie's Nook

Abortion and Euthanasia
Feminism Without Clothes

Impairment-Specific Prejudice
Angry For A Reason
Ballastexistenz (another one)
The Bipolar View
Camera Obscura
Colin's Journal
Creek Running North (cross-posted at Bitch PhD)
Fate is Chance, Destiny is Choice
Fiber Fool
Sly Civilian
Personal Eye View
Smiffy's Place
Smiffy's Place (another one)
Space Cat Rocket Ship
What's that you said?
Whose Planet is it Anyway?

Transabled and I had a misunderstanding which we resolved here

General Thoughts on Disablism
Angel Moon Art
Becky's Journal
Billie's Diary
Brighton Regency Labour Supporter
Comprehension Dawns
Definition - A Feminist Weblog
Falling Off My Pedestal
Feathers of Hope
Gimpy Mumpy
The Gorge
Immitation of Life
Louise Norlie is a Real Person
Maman Poulet
The Patient Is In
Robot Heart's Blog
Simul Justis Et Pecator
Personal Eye View
My Sweet Perdition

Non-English Language Blogs
Behindertenparkplatz (German)
Evstricktnichtnur (German)
Wheelchair Boy (Taiwanese)

Quotes Against Disablism
The Life and Times of Emma

Art Against Disablism
Geezer with a Meezer

Poetry Against Disablism
Just Between Strangers

Personal Journeys
Did I Miss Something?
Disability Law
Diary of a Goldfish
Sally's Life
She Who Has Pissed In Your Wheaties

Love and Sex
Ballots, Balls and Bikes
The Web Pen Blog
The Nasty Girls

Monday, May 01, 2006

My Blog Against Disablism

I did not want to write a highy political post for today, so instead have concentrated on my own experiences of first becoming aware of disablism. I wanted to get across that disablism is very often a subtle force which exists within us as well as around us, at least before we have good reason to confront it. Unfortunately this was all rather rushed. Some of my experiences may be unique to people with chronic illness; I can't speak for anyone else.

I will have been disabled for ten years this summer, but for most of this period, I have rejected the term. I am not talking about a reluctance to declared from the rooftops that I am a disabled person, but the vehement denial of that fact. I suppose this means that some of the very first experiences of disablism came from myself; in my mind, being disabled meant all sorts of negative things I did not wish to take on board.

And whilst perhaps disabled people may only wear their disabled hat in certain circumstances, whenever I hear anyone actually deny it, I hear

I am not like them.

and I sympathise.

When I got sick, I knew the role I had to play. At that point, I was not yet acquainted with the great sociologist Talcott Parsons and The Sick Role, but this is exactly what was happening. Parsons described the way we and people around us understand and respond to illness. In simply terms, illness allows you to be exempt from certain roles and responsibilities. This exemption is conditional both on the active desire to regain health and legitimisation via doctors and other professionals.

The fact is that most people who get ill in some way have a period of reduced activity, undergo some form of medical treatment or therapy and then they get better again; a clear-cut happy ending. Others die; a clear-cut unhappy ending. Adopting the sick role is a perfectly rational way to respond to a short term crisis of health.

Only some people get sick and stay sick and this is where this where the real limitations of our response to illness begin to show. Exemptions from activities can become exclusions; if you can’t work, socialise or exercise in the normal way, you can’t work, socialise or exercise at all. Legitimisation becomes harder as colleagues, family, friends and even doctors lose patience with a problem that just goes on and on. Sooner or later someone will suggest you pull yourself together. And when an illness continues for years, the pursuit of unobtainable health can become a deeply demoralising one.

Melodramatic as it may sound, I found myself so frustrated with my failure to either defeat or be killed by my particular disease that I contemplated bringing about an unhappy ending myself. My choice to go on living meant breaking the rules and finding a way to move on without any resolution to this particular crisis. In fact, I needed to stop regarding it as a crisis altogether; illness is unpleasant and has its pitch-black moments, but it doesn’t need to be a constant, all-consuming challenge once you have lived with it for a good while.

So I began to ditch what Talcott Parsons described as illness behaviours; from now on I was going to differentiate between what my illness actually prevented me from doing and those things which I wasn’t doing because I was waiting to get better or didn’t feel I ought to do so long as I was ill.

Two FriedasI had thought that I only got out of the house so rarely because I was sick and my pain greatly limited the distances I could walk. A wheelchair solved this problem. I had thought that my education was on hold for as long as I was too ill to do full time study at a specific location. The Open University solved this problem. Suddenly I was finding new ways of doing most of the things which we consider important for quality of life; having an occupation, being able to socialise, having a certain amount of independence from my family. Life very much improved

However, it was at this point that I found myself with an entirely different set of obstacles I had never been confronted with before. Previously, my every problem had been blamed on my illness, but now I saw that while some of my limitations could be put at its door, some of them were my own doing and some of them were to do with the way other people behaved, the way that the world had been built with agile legs in mind, the way that systems designed to serve me actually held me down.

I was disabled. By myself, by society and the environment we had created for ourselves.

And I was cross, to be honest. I had thought that I was the problem.

And then, to compound my anger, I found that most of the people around me still felt that it was basically me, as host to an unremitting disease, which was the problem. I could document the many different skirmishes I had with both myself and others in my struggle to move on from this identity. The same arguments were made against every step from my getting a blue badge to my purchase of a laptop computer so that I could work from bed.

And the ultimate manifestation of all this was accepting that I am a disabled person. Accepting that label and being prepared to use it. To talk about it. To communicate with other disabled people who had very different sorts of conditions and impairments but faced very similar obstacles because we are all regarded in much the same way.

But disabled… Don’t call yourself that, people said. Why not, you ask?

You would be setting yourself apart as “other”.

I am not someone who wishes to draw attention to myself, especially not for a set of limitations which I have no control over. I would really rather have the option to go unnoticed.

Untitled 2000 However, whatever I do I am set apart as “other”. If I don’t use a wheelchair, I don’t leave the house. Never going out into the world is pretty much as other as a person can get.

But if I go out in a wheelchair, I am regarded totally “other”. There are all sorts of places and modes of transport from which I am excluded. I am treated differently by some of the people I encounter; I may be stared at or ignored completely, I am spoken down to or else addressed through a person that I am with. I embarrass people, just going about doing ordinary things.

Calling myself disabled is not an assertion that I want differential treatment.
Calling myself disabled is an assertion that I am already in receipt of differential treatment.

You would be giving up.

Even after ten years of incapacitating illness, you would be surprised how many people regard me as defeatist for regarding this as a long-term situation and for being largely disinterested in the miracle cure they read about that involves eating nothing but cabbage and sherbet for six months.

Even when you can only walk a few metres, people will warn you of the dangers of using a wheelchair; you will become dependent on it, they say; you will give up. In truth of course societal attitudes and the built environment means that life is very much easier on foot and I would never use the wheelchair on journeys I could manage on my feet.

When you know your limitations and are determined to work within them, to avoid a relapse in health, a public collapse and inconvenience to others, then you are still advised to throw caution to the wind, to let your hair down and to hell with the consequences. They are my consequences and I know them only too well.

You would be denying your abilities

Many people have thought to tell me that they don’t think of me as disabled. Like it is a compliment. One close friend actually said, “I don’t think of you as disabled, because you are more intelligent that most normal people.” I was a little too stunned to muster any of the myriad comebacks that have since occurred to me.

Experiencing disability is not to do with experience some sort of global incapacity. Disabled people can be highly intelligent. They can also have severe intellectual impairments. Disabled people can be extremely physically fit, or they may have very limited physical capacity. (Oh dear, I’ll be rewriting Lady Bracknell's One in Seven if I’m not careful).

You take my point; there is nothing about being disabled which says there is anything in particular I can’t do. I have many skill and talents. Being disabled just means that there are some things which I am prevented from doing. To say that in your opinion, I am not prevented from doing these things, is not going to make me feel any better when I am awarded a free bus pass, anywhere in the county, only I can’t physically get onto a bus.

I found all this quite difficult to write. I think I would have been quite dissatisfied with anything I could have written for today (and it is actually May 1st as I am trying to finish this). A certain young man was spot-on about performance anxiety. But also, it is hard because I am describing a struggle which is ongoing.

I still feel I must constantly defend the fact that I am not preoccupied with my health; that I have called off the search for a miracle cure. I still feel I must constantly argue that it is not all right to exclude me, it is not all right to value my life, my skills, my needs and desires any less than anyone else’s. It is not all right to consider me as passive and dependent, to judge me as deserving or undeserving of things which other people take for granted.

A happy ending, of sorts, arrived when I realised that it is possible to have a full and interesting life within the limitations of ill health, and to realise that very many of the obstacles I face are not my sole responsibility. What’s more, in theory at least, this means that very many of the obstacles I face are moveable ones; they may shift if enough of us push hard. Which, regardless of what happens to my health, would be a very happy ending indeed.

Hmm. I think that’s the best I can manage. The post, I mean.

List of Art and Artists (they all have something in common)

(left) Starry Night by Vincent Van Gogh
(right) The Two Friedas by Frieda Kahlo
(left) The Umbrellas by Auguste Renoir
(right)Untitled 2000 by Allison Lapper
(left) Aurora by Mark di Suvero
(right) A sign from The Way Ahead, a collaborative project by disabled people run by disabled artist Caroline Cardus for Inter Action. See some more of the exhibition on the BBC News website.

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