19 December 2011

♫...The speed so fast I felt like I was drunk...♫

In the late-ish 90s I was doing my A Levels for the bazillionth time (ever indecisive I couldn't just pick a subject and stick with it. I kept changing my mind, quitting that subject, and starting something different the following September). Text messaging was the new cool thing and I loved it. Struggling to understand what people are saying when I can't see their lips move meant that mobile telephony was difficult: When you're having a conversation with someone and you're both in the relatively background noise-free environments of your home it's fine, but roaming communication meant people would phone from the pub while you were in the supermarket and the background cacophony drowns out any hope of following the other person's words. But texting... No hearing necessary: Communication on the go without me constantly shrieking "you what?"

The minute someone taught me how to send a text I was in love with the technology. I thought it was the greatest thing since sliced bread. Well, greater really: Slicing bread yourself isn't all that hard. It's certainly easier than decoding a drunk friend's speech at 3am when you've got APD.

My A Level theatre studies teacher was not a convert. She decried that such short, swift, exchanges would be the death of human communication. I, obviously, scoffed. How could such a wonderful idea opening communicative doors possibly be a bad thing?

I'm starting think that she might have been right.

Don't get me wrong, I'm a huge fan of texting, tweeting and Facebooking. Two weeks ago I was in a meeting and the chair tried to avoid using the word "twitter" because he knew I'd start proselytising. Again. But such speedy exchanges have altered the way we interact with each other and I'm starting to pine for the days when people were reliable.

I should say at this juncture that - yes - I know this post makes me a massive hypocrite. I'm well aware that I'm just as flaky as everybody else these days. I'm just as susceptible to life zooming past me as everybody else on the planet. But that doesn't mean I have to like it.

Everything being so immediate has its drawbacks as well as its merits. I like that I can tweet about a ludicrous conversation with a salesperson and have that company's customer services get in touch with me within a couple of hours because my tweet spread like wildfire. When I'm so ill that I can barely remember my own name I like that I can post one word answers to a question on Facebook without feeling a cultural obligation to ask "and how are the kids? Did your dog recover OK from getting his knackers whipped off?" (That last question especially doesn't go down well with someone who doesn't have a dog and you've just conflated them with someone else.)

I hate that not replying to people has become acceptable because it's just the norm now. With a few exceptions I've learned that if I haven't had an Email back from someone within about 6 hours of me sending then I'm not going to get a reply at all. Most notable exception was in May 2011 when I got a reply to an Email I sent in Dec 2008, but most people don't trawl through 2.5 year old Emails.

I think Twitter and Facebook have a large part to play in creating this environment of immediacy. I think we all follow/are friends with more people than more people than we realistically can keep up with. I don't get to see every tweet from every person in my twitter timeline any more because there's just too many tweets. I'd love to have a cull, or at least to stop feeling compelled to add more people, but there are just too many fucking awesome people on twitter that I just can't not follow. Even if it does mean I miss quite a few tweets from everybody because I just can't keep up: Keeping up with a fair few tweets of 198 people somehow seems more acceptable than only following, say, 100 awesome people but getting to see all their posts. Because I get an extra 98 people's worth of awesomeness, even if it's only intermittent awesomeness.

But this blasé attitude has spread beyond twitter into the rest of our lives. We check our Email and we deal with the really urgent stuff and leave the rest "until later". Except with us all being so in the present these days "later" never comes. The next time we check our Email we, once again, deal with the pressing matters while the "till later" stuff gets shunned to page 2 of your inbox and ends up forgotten entirely.

Blogging is much the same. It used to be the case that I'd read all the blog posts in my RSS feed reader. But now I, like everyone else, only read something if I happen to be online when it's posted because we're so present-focussed we don't scroll down any more. Seven years ago your latest blog post would get just as many hits if you posted it at 11pm on a Saturday as it would if you posted it at 11am on a Monday. Even if the hits didn't come in until Monday morning, the post would still ultimately get read. This is no longer the case. I find myself more and more advance-scheduling tweets and blog posts to be published at time when I know the internet will be busy.

All this means that we tend to keep repeating ourselves. When we write a blog post most people won't just tweet the link once and leave it; they'll keep on posting at different times of day to attract an audience. If you send someone an Email and they don't reply you're faced with the choice of having to either just forget about it or chasing them up. I really hate both of these things.

I can get really paranoid about being annoying. Most of the time I'm fine with it: My high-pitched voice, rapid speech, and opinionatedness do not endear me to the masses. Usually it's my conclusion that they're arseholes for not wanting to listen to me. But sometimes, when I need someone's help, I can't just say "oh, fuck it. I won't chase them up." And when I have to chase someone up I become acutely aware of how annoying I am.

(I should be clear that this isn't a self-loathing thing and other people find me not at all annoying; quite the opposite. I had no problem with being annoying until other people told me how grating I was. And they've told me that in great numbers.)

Welfare reform is currently making me crazy. Actually properly crazy. But I refuse to give up fighting just yet because I would actually like some kind of future. I know we've only got a few weeks left before my fate is doomed, but until that time I can't not fight.

This need to fight while extra crazy is just making my neuroses worse. If I Email someone who has got the capacity to be of some use in the fight against welfare reform but I don't get a reply, what should I do? Well, obviously, I should chase them up. My Email's probably fallen to page 5 of their inbox by now and is never going to get a response unless I do. But I really wish they'd reply of their own volition and save me the time spent sat in the bathroom, in the dark, rocking back and forth repeating "oh God, I'm a terrible person. Oh God, I'm so annoying. Why do I have to be such an awful person? Oh God I'm such a bad person. I wish I wasn't so annoying."

And as for repeatedly tweeting the same thing over and over just to get the message out to people who happen to be online at different times of the day: It'd be interesting to do an experiment to see if people found it easier to keep up with all the people they follow if it wasn't the norm for everyone to post the same thing several times. I don't need The Huffington Post to tweet the link to the same article 3 times in as many hours, and if they didn't then perhaps I might have caught the tweet in which a friend was having a crisis.

My main problem with repeatedly tweeting the same content is, again, that I can't do it because it sends me into mini-meltdown about being too annoying. I have few enough followers as it is without boring the few I've got into abandoning me because I just post the same shit again and again. And giving someone an @ message requesting a retweet is another behaviour that'll make me weep with guilt if I try it.

I'm a big fan of the technology that allows us to communicate so instantaneously. I love that I can have these swift non-verbal interactions with anyone anywhere in the world. Twitter and Facebook are so valuable to me as a poorly person. From May to October this year I didn't write anything longer than a tweet because I just wasn't well enough. But these short, rapid, interpersonal exchanges saved me from being completely isolated in that time. You can tweet using your iPod in bed, you can tweet from a hospital waiting room, you can even sometimes get sufficient signal in the hospital basement to send a text between x-rays. You can check Facebook while waiting for your pharmacist to dispense your vast quantities of medicines. Last week was the 3rd anniversary of my mum's death. One of the first things I did when I stopped screaming that night was to tweet the fact because I wanted support from my friends around the world.

It genuinely makes me quite sad that my old teacher turned out to be so prescient about the death of communication; or at least the death of quality communication. I'm a big fan of short, rapid exchanges you get via text or on Twitter; but did we really have to abandon "old school" replying to Emails and so on? Have we as a species become so wrapped up in our fast paced 140-160 characters world that we can't find the time in our lives to read/write anything longer? Have we become so present-orientated that we really can't reply to any Email sent more than 6 hours ago. Even if it's a really important one?

Stop this world. It's spinning too fast. I want to get off.

02 December 2011

♫...I'm not sure all these people understand. It's not like years ago, The fear of getting caught, Of recklessness and water...♫

There has been much talk over the last few months about the irony of Atos doing the computing for next year’s Paralympics. People thought things were getting even odder when Atos founder Bernard Bourigeaud joined the International Paralympic Committee (IPC) board.

Based on my experience I don’t think it’s that bizarre at all. In fact, again in my experience, Atos and the IPC have more uniting them than separating them.

As a teenager my dream was to be a Paralympic swimmer. All disabled athletes are classified by medical personnel as to their level of impairment. So all prospective Paralympians have had to undergo an Atos-esque assessment before they can compete.

All sports have different classification systems; some like athletics have impairment-specific systems (so people with cerebral palsy compete against people with cerebral palsy and people with dwarfism compete against people with dwarfism... and so on) while other sports like basketball have a pan-impairment system. Swimming uses the latter style system.

The classification system used in swimming for people with physical impairments ranges from 1 to 10, where 1 is the most severely impaired, and 10 is the least severely impaired. A typical 10 will only be missing one hand or less than half a leg. A typical 1 will have almost no use of any part of their body.

The system is designed so that in theory you compete against people of a similar level of impairment to yourself. So in an S6 race you might find a couple of paraplegics, a couple of people with no arms, a couple of people with hemiplegic CP and a couple of people with dwarfism. Wildly different diagnoses, but considered to be of the same *severity* of impairment.

People with a physical impairment will have 3 different classes - an S class for freestyle, backstroke and butterfly; an SB class for breaststroke and an SM class for individual medley. This is because free, back and fly rely mostly on the arms for propulsion but breaststroke relies more on the legs. So while a paraplegic and someone with no arms will be able to race as equals on free, back and fly; the person with no arms would have a massive advantage over a paraplegic in a breaststroke race. So typically the paraplegic will be an S6 SB5 SM6, while the person with no arms will be an S6 SB7 SM6. Yes, this does mean that the person with no arms still has an advantage in the IM race; the system is far from perfect.

After years of training I made it into the GB team for the Europeans’ in Seville in '97. I went out to Spain as an S6 SB5 SM6, and came home as an S9 SB9 SM9! This was because the classifiers/the system is only used to dealing with "common" impairments. Osteogenesis imperfecta is rare. They ignored not just one, but four aspects of my impairment when assessing me, and decided that other than 2 duff elbows, one duff knee and one duff ankle I was almost able-bodied. A quick glance at me can tell you that I'm quite clearly much more severely impaired than that!

Osteogenesis is a form of dwarfism. Despite being sent medical evidence from experts the IPC classifiers refused to accept that fact. There was actually a swimmer around at the same time who had achondroplasia – a much more common form of dwarfism – that had had her limbs surgically lengthened and was taller than me. Despite being classified on her height alone, and being taller than me she was an S8 (so lower than me) because they took her dwarfism into consideration; but not mine.

They refuse to believe that hypermobility is impairing. They assess each joint and award it a point score. A low score means it has very little movement; a high score means full range of movement. The IPC refuse to start deducting points again when your joints go far beyond normal range of motion. Instead they just say “aren’t you lucky to be so flexible?” So my inability to keep my fingers together whilst swimming (very important for your hands functioning as paddles) because the joints just aren’t strong enough to resist the force of the water was disregarded. The only joints of mine they didn’t give full points to were my elbows, left knee and left ankle.

You would think that my joints with restricted motion from being repeatedly broken would at least knock off some points, right? Wrong. Like I said, they only accepted I had 4 impaired joints. They totally disregarded the fact that my wrists have been smashed up too.

Because collagen (the protein not formed correctly in OI) is also found in muscles people with OI have poor muscle tone. We can strengthen our muscles with exercise but we’ll always be starting from a lower baseline. At the time of that classification assessment in 97 I was training 7 times a week. As a result my muscles were roughly equivalent in strength to a non-disabled person who does no exercise at all. They didn’t care that I worked my arse off to have the equivalent strength to a lazy person with standard muscle tone; they just marked me down as being of “normal” strength, refusing to accept osteogenesis affects muscles.

The International Paralympic Committee can call you up for reclassification any time they want, but you can only appeal once. I had my appeal in 1999. They ignored medical evidence, consultant's letters, etc and decided that I was still an S9 (though my SB class got reduced to SB8, it didn’t matter because I sucked at breaststroke so never did it).

My one appeal was used up. That was that. I quit swimming in 2000. In recent years I've joined a Masters team, but because of my health I don't get to train that often. Between my stomach, a broken rib and a prolonged infection I haven't been for a swim since July. I've gone training with little fractures many times (in fact the last time I went in July I had a cracked metacarpal) but the rib was a bit too bad; getting out of breath was pretty painful.

For people familiar with reading about experiences of Atos assessments it all sounds fairly familiar, doesn’t it? Ignoring symptoms in a medical assessment in order to find people less impaired than they actually are. Though, actually, I’ve personally found Atos to be fairer: 2 IPC assessments and they both claimed I was less impaired than I am. I’ve only had one Atos assessment thus far and that did, correctly, find me unfit for work. And within the benefits system there are several steps of appeal, the IPC only let you have one.

(In case you’re thinking “how can she be unfit for work if she used to train that much?” I would direct you to many other posts on my blog where I talk about how I’ve always had my mobility impairment but until about 2005 I was “healthy”; I was free from illness. I just had a dodgy musculoskeletal system. But now I have a ton of unrelated health problems rendering me incapable of working.)

Atos are known for making assessments on how a person looks: People with invisible impairments tend to fare worse in the assessment process than people with conditions that can be seen. The IPC employ the same tactic: Part of the assessment process is that they watch you swim. Sounds sensible when they’re assessing how your impairment affects your ability to swim, right? My problem was that I’m a good swimmer; I trained hard and developed excellent front crawl technique. I was penalised for not looking particularly impaired when swimming front crawl, regardless of how impaired I actually was.

Both bodies also are more forgiving for people with better known/understood impairments. If you have cerebral palsy, a spinal cord injury, a missing limb or achondroplasia the IPC assessment criteria accommodates you. Likewise Atos are usually more understanding of people with better known conditions (like cancer) than people with diagnoses that aren't quite so well understood (like ME).

Of course, when the IPC find you less impaired than you actually are it means that you lose your dreams. When Atos come to the same conclusion you can lose a lot more.