91Èȱ¬

The cockles of our little disabled hearts were warmed by this one here at Ouch Towers, folks. So much so that we're lost for words as to what to say about it, so we'll just give you .

We're delighted to note that this kind-hearted firm in Malaysia "hire talented people for their abilities, not their disabilities". Yes, we are. Really.

Ouchers I have not been to well of late and on top of that (and exams) have been battling against the dreaded 'D' word, deterioration.

Yesterday I had to have an ECG; it was just a routine thing because of the (unusual) combination of medication I'm on. I am very pleased to report that all came back completely normal (I thought it was funny my heart appears to be the only 'normal' bit of me) the only real surprise was that I have shrunk by a whole centimetre!

The nurse was very nice and reassuring but asked me an odd question; 'how where you blinded'?

Now as you may be aware Ouchers I am fully in touch with my disabledness and have absolutely no problem talking about any of my impairments or health conditions. As far as my eyes go the more people that know the better they can understand me, well that's my opinion anyway. Hell I even let medical students take a look at my various oddities, if it is to help them learn I'm willing to help!

The thing that made me think was her assumption that I was not always the way I am, that I became disabled.

As it happens I actually had significantly less vision when I was born than I have today, its thanks to some absolutely awesome surgeons at in London that I can see at all. I'm lucky for what I have got; further more I am not blind thanks to there skill and advances in medical technology; I am partially sighted.

Now I wonder if her question was in fact shock that wow there is a visually impaired teenager out there. I am made fully aware every time I visit my local eye clinic that the majority of patents... how can I put this diplomatically... are in the later stages of life. There is a VERY definite age gap. I know that this is largely due to the fact that like many other things vision deteriorates with age. The older a person is the greater they are at risk of eye diseases such as age related macular degeneration, glaucoma and cataracts.

So maybe she assumed that because of my age I am too young to have any on the for mentioned eye conditions thus I must have had an accident or something. When actually in fact I was born with cataracts (and MANY other things) and now have glaucoma, two conditions which are largely associated with the older generation.

I corrected her on referring to me as blind and explained that it was a congenital eye condition and outlined a few of the more interesting bits of my condition(s).

I did this despite the fact that it is plastered all over my notes that I am partially sighted and they also have the full history of my eye condition, all she had to do was read my notes.

Today I had my nose cauterized (not fun!) by a doctor who also showed great understanding of my disability, I was sitting in the waiting room, waiting to go in when I was suddenly grabbed and pulled, looking up I saw it was a doctor. She then continued (despite my desperate attempts to get her to understand that it would be easer for me to follow her) to drag me around both the surgery and the consultation room.

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I sometimes forget exactly why I stopped buying newspapers. Then stories like remind me.

Since when has it been shameful to be disabled? The Sun's take on the careless misplacing of medical records in the latest courier farce seems to suggest as much. 'Intimate details' about drinking habits, sexually transmitted diseases and (gasp!) disabilities are included in the lost files that somehow never made it from London to the Isle of Wight. Records of more than 38,000 patients were sent to a firm that checks software. The software, transported by City Link, never made it back.

Oh no! Fraud! Scandal! Blackmail! Now somebody out there is going to know that Mr N.E. One has Multiple Sclerosis. Oooh how about that, eh? Or perhaps the 'wrong hands' will be more interested in a Ms A. Binger, who spilled her guts during a recent casualty trip where doctors recorded her consumption of "a few ales" before pumping her stomach. And as for Mr N.E Thing, well, would you be that surprised that he caught something nasty with a history like that? But do we actually care? Loss of data is unfortunate and has implications for those paranoid about ID theft. Loss of medical records is particularly unfortunate, especially when your health centre doesn't notice for two months - as reports. But back at The Sun, what really got me was how the 'personal detail' of disability was somehow on a par with alcohol consumption and STDs. Something to definitely keep quiet about, oh yes. Ssssh.

Perhaps more disturbing is the surprise with which the same newspaper (I was in a café, the sort where The Sun lies around and gathers egg butty stains throughout the day) .

No ordinary burglary, mind. A burglary committed, wait for it, by a man in a WHEELCHAIR! Their capitals, not mine.

Are all people who use wheelchairs saintly innocents? No. So what's the big deal here? That a man in a wheelchair could steal from his neighbour? Or that the sheer feat of stealing is now achievable from a wheelchair? Will wonders never cease?

It turns out the person in question was hard up and desperate because his benefits had been reduced. Oh, well if he was a poor disabled person that's okay then. Not!

It is not okay to steal, but it is equally not okay to brand someone a Wheeler Stealer like they are some sort of side show to the main news of the day. Which consisted largely of Jude Law snogging Rod Stewart's daughter in an Essex nightclub. Oh, and a postman who has been posted on YouTube drunk on duty. 'Your Round!' was the headline they were looking for I think.

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I was about to write a post for ouch! after being told at a 10K by a/the race organizer that people in wheelchairs didn't HAVE a gender (and thus prizes were given out to the first three "wheelchairs"). But I didn't. Because on May 3rd I had a series of seizures, continuing at the hospital where I was given Ativan to limit the brain damage and frequency of whatever was happening (no one really knows, not even the neurologist who was standing there when one happened). This was followed by a TIA (mini stroke) a few days later. Since then, I haven't tried writing for ouch! because I was scared and ashamed. I knew that I wasn't the same writer I used to be and I didn't want people to notice. I didn't want pity or disinterest either and I didn't know what to do. So now I am doing what I think the Elizabeth McClung of May 2nd would have done: attack the issue directly.

After the first seizure, I had lost about seven years of memory, while language use and other cognitive effects also later displayed (plus I started reading backwards and speaking in Spanish to the Medical Personal; after the TIA I spoke Japanese). It has been explained to me that my filing system has been ransacked, scattered all over the floor and that it will take the time of good and bad days before I can file it properly again. Basically I have the hell intern job of being a legal clerk temp in a huge library that hasn't been sorted in years.

Stroke alone is THE leading cause of adult disability in the US with just under cases in 1996. I imagine that statistic is reflected across the UK and EU as well. That doesn't count TIA, seizures, head injury and/or trauma much less brain tumors or operations. As I was to find out from people who emailed me, from head injury to those still dealing with a stroke in their 20's: what I had experienced, and am still experiencing is not isolated, it is just not talked about. Or maybe it IS talked about on Ouch! and I don't remember, that's something I say a lot now; "I don't remember."

My writing isn't as eloquent or as cheeky as before, but thankfully the writing has started coming back faster than speech, memory and heard comprehension. In my first day of being left alone, when I could understand my surroundings, I went in my wheelchair down to the local video store. While I did not recognize them, they recognized me and we started talking. After a minute or two of listening to my responses ("Everything is....illuminated!"), one of them asked me if I was on drugs. I told them about the seizures. One looked at the other and then walked away, while the one who stayed used 'the voice.' That voice people use on children and others considered too stupid to understand people are talking down to them. I hear 'the voice' a lot, even from my partner when she slips up.

As far as I can tell my IQ, which is my ability to process new information, is unchanged, merely the accumulation of topics and vocabulary which society uses to judge adults as to their intelligence is gone. I am fortunate in being an honest person because long before the memory of a person returns to me the 'emotional memory' of them does. So while I might not recognize someone I will say, "I like you." Or to one night care worker, "You make me feel safe." While to at least one other, "I'm not sure you do what you say."

It is hard hearing about this 'other' Elizabeth McClung; the things she did and said and not only have no memory of it but also feel that I have to 'live up' to her, like a better, more interesting older sister. Some days I "Fake" it, where with some memory and seeing facial expressions I can make someone believe that I remember them, or our relationship. But I have also been hurt and shocked when a friend used a "trash talk" phrase that 'used' to be an inside joke between us (I did not remember). And other times I try to fit in by "continuing" conversations, only to find out that the conversation and events I am "continuing" occurred a year or more ago.

I don't know how other people deal with this; with the bad days when so many things are confusing that within an hour I have an "overload" headache. Doctors say they don't know when the memories will return. There is no question this is a disability. Anytime I can't leave the house for a week or two without accompaniment because of a seizure that's a disability/impairment. Ironically, my loss of memory meant that while I was IN a wheelchair, my memories and feelings were of a time when I was doing marathons. So I was itching to get out the door and do my 10 km run of the day and had to be reminded (frequently) that I don't run anymore.

The point of this post? Perhaps just to say that I am still here. Even if I still don't understand time, particularly how the days of the week relate to each other. So surround the walls of my desk with notes to help me understand that the word "Thursday" means a caregiver named J. is coming to give me a shower, and another note to tell me, "Today is Thursday." That is not going to stop me writing for Ouch! And yes, I say several times a day "I don't know what that means." But I believe several million potential readers of Ouch! can relate to some aspect of what I am experiencing. I am not dead, even though I am still reclaiming from the darkness the memory of my own life, so I go on. I just wouldn't recommend telling me you're meeting me at the pub on Wednesday; not unless my partner is there or you plan on calling me up to say, "Elizabeth, THIS is Wednesday."

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Quite a cute 'Thought for the day' on Radio 4's Today this morning.

from Iona, spoke on the subject: "Our world is not intended to be perfect and neither are we".

He spoke honestly about how he was going to cancel on his friend Jed, a young blind fella, largely because of what he later realised were his own prejudices - though prejudice feels like quite a strong word in the circumstances. You should listen to it or read it and take from it what you want.

Listen now

Read a transcript

Find all Thoughts's for the Days's on the 91Èȱ¬'s rather good Religion and Ethics website.

Although over two weeks have passed since this year's , Vaughan asked me to write a post rounding up some of my favourite posts and I have only just managed to do it. Apologies for not doing this sooner. The quality of this years' posts was truly outstanding. If you didn't read any, please do have a look. And not just at my round-up; at the top of there is a list of other bloggers who posted links to their own favourite posts of the day.

This is not so much a summary of my favourite posts (although all these posts are fab!), so much as my attempt to provide a representative cross-section of the Blogs Against Disablism, 2008.

writes about the over-simplistic way that accessibility is understood in the IT industry, as something that caters exclusive for external users with visual impairments, whereas in , The Angry Gimp examines the gap between and what the law says and how potential employers react to disabled candidates.

In , Katie despairs at the London Mayoral Election results and Boris Johnson's pledge to bring back the dreaded Routemaster, whilst looking at the forthcoming US Elections, Autistic Bitch fom Hell gives some Meanwhile, in Sally reflects on the personal toll of political battles.

The 'R' word came under examination, with Kate Harding explaining and Andrea offering some alternatives in . Meanwhile, in , Narrator subvertst he concept, writing about the way that disabled students and their access needs are understood only through narrow diagnostic labels:

So it is time to say it, and say it every day. There is no normal. There is no normal way to read, or to write, or to listen, or to see, or to get from here to there. There are simply ways of doing things, and the ways which work best for each human individual will vary - based in human capability and human desire and human preference. And it is in individual choice that technique decision making must be based - not the diagnosis that I, or you, or we, are the victims of some pathology which infantilizes us.

In the United States, the mental health community remain affected by the aftermath of the Virginia Tech Shootings last year. In her post, Knitting Cleo writes about the history of mental health policy, whilst Hymes offers us a . In Against the Glass writes about our desire to simplify mental ill health and take up our pitchforks in responses to tragedies involving someone with a mental health condition.

In a post entitled , Terrible Palsy is frustrated that parents don't talk to their children about disability and in y, David finds he bares a remarkable resemblance to every other wheelchair-user. Meanwhile examines some of her own learning experiences;

I have come to the conclusion that ablism, or racism, or any other 'ism', is not necessarily cured by freeing oneself of all pre-conceived notions, or by treating everyone exactly the same. Indeed, I am unsure if it is ever possible to free oneself of all inherent cultural baggage. What can be done is that people question themselves.

In her , Jayangel gives advice to those with "Healthy Privilege" whilst RachelCreative gives us the beautifully concise and in a post first conceived on the Ouch! Messageboard, Mary has a .

And finally, there were appeals for our sympathy and compassion. In , the Unreliable Witness implores us to take pity on those of us who may clmb mountains but a liable to struggle on public transport. Whilst, in , Wheelie Catholic looks at the tragic condition of Ableism and how it might be treated;

"Effects of disease: Although not fatal, ableism limits and restricts the sufferer's lifestyle, relationships and quality of life. It also affects those who come into contact with the ableist in negative ways, particularly those with disabilities. Although ableism isn't inherited, exposure to it may harm an ableist's children by skewing their attitude toward people with disabilities and increasing their chances of acquiring the disease - therefore it is, unlike a disability, contagious to some degree."

There are loads more great posts, but I hope this provides a taster. And thanks once again to everyone who took part, read and commented on the day, and to the Ouch! team for letting me promote the project here.

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For the past 5.5 hours, I've been lying on my back, in bed, trying to sleep. I can't. I just can't. I've been feeling the hot red pain shoot out of my back and across my butt. It seems to skip my legs, but there's an orange ache in the sole of my foot. Unrelated, I assume, is a similar blast in my shoulder when I move it or try to lie on it. But perhaps it's all related? I don't know. And I don't care. I can't sleep.

I have an anti-pain self-hypnosis podcasty, mp4 thing for moments like this. But I can't stand the feeling of earplugs in my ears - they seem to be forcing my jaw open and I can't get the volume right. The soothing voice on the podcast tells me that pain is a warning system and that I don't need the part of pain that is hurt. I'd like to tell the voice that he, too, will be needing a warning system if he doesn't watch out.

I've begun to imagine the speaker as a man of a certain age. He is not grey yet, but he has definitely lived the good life. He tells me to find my pain on the infamous ten scale; I imagine what I could do to him on the infamous pain scale. I wonder if he knows how he sounds on tape and is embarrassed by the sound of his voice. Does he cringe at the pauses? The fragments? The sound of his breathing?

My anonymous voice tells me the effect of the hypnosis will endure long after he has finished speaking. He's right, you know. I still want to kill him, and I haven't listened to him for a couple of hours. I am wound up. It seems that the quilt is too heavy. I like my sheets; they are usually cool, slippy, smooth. But tonight, they are filled with cat litter and what seems to be food crumbs.

This is not the worst pain I have ever been in. That's why I haven't taken anything. I can't decide whether I can't sleep and so I am focusing on the pain, making it seem worse than it actually is -- therefore I shouldn't take anything -- or whether the pain is keeping me awake -- clear cause to take something. The lack of sleep (it's been days of this) is making me slightly unclear in my head. I've been drinking espresso like nothing on earth (yes, it doesn't help) to stay awake in the day, and hot chocolate, soup, and herbal tea to go to sleep at night (not all at once).

OK. Here we go again. The voice tells me to breathe and sink deeply into the bed; does he know that beds can hurt? His instructions get detailed. I always get stuck on the way he says "fascia." It seems weirdly out of place. Fascia. Say it a couple of times. Fascia. Time passes; the voice pauses; he's waiting for me to perform his last exercise. I don't finish in time. Dammit. He's bringing us out of the hypnosis now. I haven't finished this blog post yet, but he's already asking about the pain scale again.

I know that in twelve minutes' time, the whole thing will start again -- there's a gap in the recording. The pain in my foot has a new friend: the ache in my ankle. My calf hurts now, too. I become deeply aware of my surroundings: the coffee cups on the bedside table, the soup bowl on the floor, the cat in the bed, the .... I can turn the sound off, but I can't get him out of my head. Shut up, dude. I need to go to sleep.

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Crap News is the place on Ouch where we feature those poor, yet excellent, news stories about disability. They usually come from local newspapers but not exclusively - and seem to be the result of a journalist who wants to fill a bit of space in his/her publication. I suppose you could get angry but it's much more fun to just laugh at the gems that spew forth.

Our favourite Crap News today is from Workington's Times and Star:

... well I should jolly well hope not!

it's a story about a guy who, um, well basically he's going on holiday. The headline 'Guy goes on holiday' wouldn't be quite so interesting though.

Local man Jim Pearson is taking the tall ship Lord Nelson sailing from Belfast to Whitehaven. It's one of those disability ships that gives you an inclusive experience. Might be good, might not be, I'm not your biggest sailing fan so don't ask me.

The headline 'Disability won't stop Jim taking on his tall ship challenge' comes from a long pedigree of stories - the subtext being that his disability should stop him but it doesn't. Always it never stops them. I have this post apocalyptic dream occasionally where aliens come down to a planet earth that humans have destroyed. They try to find out more about us by going through our newspaper archives and discover all these stories about 'the disabled' who are always out there doing things. Brave things. Extreme things. They'll come away with the impression that disabled people were the most active people on the planet. Anyway, I'm distracting myself.

My favourite line in the article is: "Jim Pearson, 55, of Beacons Close, is setting sail on a tall ship despite being 30 per cent disabled."

Beautiful! It gets the localness in there nicely but also we get an insight into just how disabled he is - and that's 30 per cent.

I've just done a quick check round the table here at Ouch to see if anyone can put a figure on how disabled they are. Vaughan reckons he's about 20 per cent disabled because he lost his leg and probably has about 80% of himself left. Gideon (new boy) puts himself at 27 per cent whereas I know for a fact I'm 80 per cent disabled because it said so on my Disability Living Allowance form.

We hope Jim has a good sailing trip.

The Great British Summer appears to be upon us - or, in other words, it's raining cats and dogs, so if you fancy a bit of sunshine, you could always pop over to the Cannes Film Festival to catch the premier of "Blindness".

The film, based on Jose Saramango's novel in which a sudden plague of blindness devastates a city, and directed by Fernando Meirelles ("City of God," "The Constant Gardener"), has been variously described as a "grim Brazlian drama" and a "story of humanity, divided into two camps - those who can see and an increasingly disturbing 'society of the blind'". Why that should be quite so disturbing is something we haven't quite figured out yet.

There's a bit of a wait to see it on our shores though - the film opens in the UK in September.

A quick heads-up as they say round here. Some serious 'blue skies' thinking involved running the notion of online subtitles up our flagpole.

The 91Èȱ¬'s much discussed catchup TV service known as iPlayer
now has subtitling.

Jonathan Important Title Hassell (he does access stuff and is rather good at it) lets you in on the latest in an entry called Subtitles and Signing Advances on 91Èȱ¬ iPlayer.

It's not 100% like on the telly but it's getting there. He explains the techie challenges but, hurrah, at least some TV shows now have words ribboning along at the bottom of the screen so that more of us can now use iPlayer - a danged amazing service I'm telling yer. I mean, you thought Celebdaq was good! well, if you haven't watched tv shows online using iPlayer then you haven't lived, buster. even my mum does it.
Oh and check out the Sign Zone on iPlayer if you are one of these hand oriented communication dudes. ALL SIGNED SHOWS, ALL IN ONE PLACE! That's all! None of this staying up until 3am and watching 91Èȱ¬ 1 nor nuffink. Sheesh. respect.

Must be nice, eh, this disability thing? Sitting around all day. Nowhere specific to go. All that freedom. Don't have to work. You get all that stuff done for you, too. And you don't have to pay for it, right? Must be nice. *I'd* like someone to clean up after me.

Would someone please tell me why the first assumptions about disability involve laziness, scamming, and generally, "can't?" What possible underlying rationale makes it logical to extend "can't walk" to is "no good, has no use, couldn't possibly contribute, be worth anything?" Yes, I understand that the project of valuing human beings in general is a somewhat futile one, but given that we do assess each other, can someone tell me why these are the markers on the ruler?

Just a reminder that if you've got a blog - and even if you haven't, because it's quick and simple to set one up - today is day. Almost wherever you look on the interwebnet, there will be posts about every aspect of disablism (including some you've probably never thought of).

Last year's BADD had more participants than, um, something with a lot of participants, so here's hoping that 2008's occasion is going to even bigger, better and BADD'er (sorry, I couldn't resist).

Want to know what to do? Want to find out how to get involved? Ouch recommends that you get yourself over to headquarters at place to find out more. Be sure to tell her that Ouch sent you