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.

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.

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.

Advantages:

• 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.

Disadvantages:

• 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...

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.

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

Employment 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 Timmargh 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 Vegankid 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 Ahistoricality Brooklynite Do You Speak English? Happy Feminist Midwestern Transport War Zone and The Sanctuary Miscellaneous Personal Experiences Croneway 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 11D Bad Mama Dream Mom Emma & Co It's A Wonderful Life Michael Bérubé's "Web" "Log" Sara Skates Education 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 Edge-centric Feminism Without Clothes Impairment-Specific Prejudice Angry For A Reason Ballastexistenz Ballastexistenz (another one) The Bipolar View Blac(k)ademic Camera Obscura Colin's Journal Creek Running North (cross-posted at Bitch PhD) Emergiblog 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 Ballastexistenz Becky's Journal Billie's Diary Brighton Regency Labour Supporter Comprehension Dawns Definition - A Feminist Weblog Domystic Falling Off My Pedestal Feathers of Hope Feministe 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 Snooopy Stothers 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 Donorcycle Diary of a Goldfish Fangworld Sally's Life She Who Has Pissed In Your Wheaties Love and Sex Ballots, Balls and Bikes The Web Pen Blog The Nasty Girls

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.

I 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.

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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