BADD2013: Demi-Wife (3/3)

All the time that I've spent thinking about writing this blog post, I have had The Decemberists 'Crane Wife' in my head. As such, I suggest you give it a listen as you read (or see the lyrics here and here).

As much as the tech I've written about makes me a very lucky chap indeed, there's something that makes me even luckier. It makes a lottery win look mundane. A narrow escape from a sticky end seem every day. A large portion of chips when you only ordered a regular...well...perhaps it's on a par with that.

What am I talking about? Well, I am now (sort of) Mr Goldfish. Deborah and I recently went to Weybridge registry office in the middle of an unseasonable blizzard (which I choose not to take as some kind of supernatural sign) and got legally hitched. Not that things are ever that straight forward for us. And the funny thing is, that's not actually a bad thing at all.

You see, with our health, Deb and I are both used to the concept of pacing. We have to take weeks to accomplish something someone might do in an afternoon. We break up the task with rests, sometimes having to change to a different task if, for example, it is something which, done too often, leads to a dramatic increase in pain. Pacing. It's one of the greatest leasons a chronically poorly person can learn. Because without it, it's all too easy to become frustrated.

I have noticed, however, that when applied to something like a wedding, which is a very public event and one which involves other people directly, if they don't get the concept of pacing, they can misread the event entirely.

Our registry office do became significantly larger than we'd anticipated. Honestly I think we'd both felt that we might have two parents there, mainly as wheelchair pushers. Four parents max (which is lucky as we only have the four). This number tripled. Not that that's a bad thing - it was very nice having everyone there. But an event which we thought of as just a legal doodah suddenly became quite a bit more daunting.

Deborah, Stephen, Granny, Alex and Sophie.
Sophie might have been a bit happy, but it's so hard to tell with her.

This does serve as a prime example of why pacing is so important - it took us quite a while to recover from such a big event. If we'd tried to do things traditionally, we'd not have made it through the day.

So come late July, we'll be finishing the job we started with our own, specially planned day with the absolute minimum of stress and with everything carefully planned. And of course, those plans will never go absolutely smoothly, but because of the way we're doing things, if there is a hickup, we will be able to raise our voices, shout 'All right you horrible lot, we're starting that bit over and stop your complaining' and everything will be fine. Having such a period of time in between means that we have been able to spend time organising one section without worrying too much about the next. And we should, barring Deb's toe trying to fall off, be as healthy as possible come the day.

My parents get this - my mother's chronically ill and my father has worked in special schools most of his life. Deb's parents find it a bit more difficult to fathom, but are doing surprisingly well. I think that they saw that the registry office do really wasn't that meaningful and I think, as time moves on and the concept of a fish and chip wedding lunch becomes a bit less alien, they can see why this means so much to us. It's also, I hope, clear to see that we're both truly excited about July.

But I am aware that, because our marriage will not be conventional (which, as much as I could try to blame it on disability, is perhaps equally to do with the kind of people we both are), there are people who might not quite get it. In the same way that same-sex marriage, or inter-faith marriage, or, heaven help us, marriage between people who feel differently about chorizzo sausage, might be considered not quite official and meaningful. Not quite real.

But what do they matter?

In other posts I've spoken about tech, both special and widely adopted, and how important it is to me. So I wanted to tie them together with the wedding.

Firstly, walking sticks.

You know that a walking stick is an intrinsic part of your sense of self when you're watching a good film, have sunk so deeply into it that you have become the hero, and, watching them wander out of their front door, think to yourself, "Idiot, you've forgotten your walking stick!"

My walking stick is a part of me. And so, I have to have the right one for the wedding. Yep, I have several! And as I try to create the perfect ensemble (more on which later), so I have to choose the perfect stick. Should I choose the eagle-headed stick? The dragon from Cyprus my father picked up for me? Or should I go with the knobkerrie my sister bought me when she went up Kilimanjaro? I'm still not 100% certain, but I think I am favouring the dragon.

I hope that being able to consider my stick as an intrinsic part of the outfit means that I am fully accepting of it as a part of who I am without that having any negative connotations. In the same way as I am accepting of my glasses.

Cassie inspected my partly-made shoes from
Green Shoes, and decided that they really should
have been black...

Then there is all the help we've had from conventional tech. We booked the registry office on the strength of its website combined with the help of google maps and streetview. EBay has been our constant companion and, as Deb is making her own dress with a rather unusual fabric, we'd not have been able to source it easily any other way (although we did have some help from friends who could access charity shops...). I have always wanted a made-to-measure suit, and indeed I have one ordered. No visiting a tailor - Deb measured me up and everything has been ordered online from Suitopia. In a display of blatant greed, I have also ordered made-to-measure boots from Green Shoes to match. I will write more about both of these on another day - but as a disabled man who would have a slightly hellish time clothes shopping otherwise, these internet-accessable busineses have been a real blessing.

On the day, we want a small do. We'd not cope with having all of our friends there, and indeed, many of our friends would simply not be able to travel and cope with the ceremony. So we will hopefully be setting up a live video stream for all those people who can't manage it. This is, I think, one of my favourite bits of our system. It, along with several other ways of doing things, has made a day that will be inclusive. It will allow everyone to be involved in the ways they can be. And that is, at the heart of all things, the essence of love. Love is inclusion. An understanding and acceptance of people and things as they are. Love does not seek to change.

Which reminds me of this - perhaps one of my favourite bible verses;

Love is patient and kind; love does not envy or boast; it is not arrogant or rude. It does not insist on its own way; it is not irritable or resentful; it does not rejoice at wrongdoing, but rejoices with the truth. Love bears all things, believes all things, hopes all things, endures all things. Love never ends.
(1 Corinthians 13:4–8a)

So, in my mind, disability has helped to teach me all these things. I have become less rigid, more yielding, and yet I also have the strength to endure for the things I believe in. I have a confidence which does not stem from showing off. I do not look at the ways of others and feel envy, because I am certain of and happy with myself (whilst, I hope, being entirely accepting of other people's beliefs). And I know that, although disability can make me feel physically fragile, I can see my soul underneath and know its nature. And that it is eternal. 

All that because I'm poorly. And because I met the right poorly girl to share a world with. A world which you're all a part of.

BADD2013: Tech Expands the World (2/3)

When caught without a copy of the Iliad to read
to an unsuspecting infant, a smart phone
really comes into its own.

Having written about special technology which would benefit from being diffused out into general usage, I would now like to write about general technology which makes my life as a disabled chap so much brighter.

My phone is with me all the time. And yet, I very seldom use it to talk (or even to text) people. It is there
almost exclusively for internet related jobs. Now, I know that this is quite normal. Everyone with a smart phone has the same access to information at all times. So why do I feel that it especially benefits me as a person with a disability?

• Weight - my laptop isn't a heavy one, but when in pain, it can be hard to rest a laptop on my lap without it being a bit uncomfortable. With a phone, it can be propped or held with minimal physical effort. It's also possible to hold it at angles with which my laptop would not be happy. So on those occasions when my body needs to be bent in such a way as to resemble a slightly deformed pretzel in order to gain some relief, I can still shop on eBay. 

• Noise - my laptop's a noisy old thing. It will need upgrading soon and hopefully the new model might be a bit more quiet, but even so there are mornings when I've woken up early, dreams interupted by the pain, and rather than switch on my laptop and risk waking up Deb, I'm able to use my silent phone.  (It must be noted that I have played YouTube videos, confident that Deb won't be disturbed thanks to the headphones I'm wearing, only to then find out that my headphones might be on my head, but they're not actually plugged in to the phone...)

• Alarms - I remember my old gran's alarm clock. It had a red hand you moved to the time you wanted it to ring, and ring it would - with an actual physical bell. How on earth she coped with both the aural assault and the one alarm limit, I'll never know. My phone has a huge number of alarms set to ring throughout the day*. There are different tones to identify whether it's Deb or I who are being commanded to take tablets. Without these I know I'd be lost. And then there are the incidental alarms - something ending on eBay, a radio programme I might otherwise miss, or a phonecall I need to make. When lost in symptoms or drug-haze, a digital reminder can make life so much easier and safer.  

Whether on my phone or laptop, YouTube has become surprisingly important to me. I always rolled my eyes when people talked of YouTube being a threat to television channels, but it is so true in my case. I watch at least an equal amount of YouTube videos to actual television (excluding films). Every morning I check my YouTube subscriptions and recommendations. I will write more about these in the future, but each day I watch cheaply produced films made by amateurs who tell me more about interesting subjects than I am ever likely to see on television. This gives me a real sense of having learned about things; enriching my existence and making me a more capable human being, even if I'm not absolutely physically capable of all the things I've learnt.

Then there's social media. It's always hard when people attack social media as some kind of den of iniquity. It's usually people with no knowledge and experience who get the wrong end of a stick handed out by the dark drip-feed of a traditional media which lives in terror of its own death. Social Media is literally what you make it, because it is based on a society you have complete power over. Don't like someone on your feed? Like ancient Athens, you have access to the ostracons - you can exile them and rid your world of a dissenting voice. You can follow the lives of a thousand different people, and see what is important to them. The world expands, and so we care about each and every corner of it.

Of course, the downfall of this customised society comes if we forget that it is an individual construct and that a larger society outside of our direct and total control lives on and can threaten us (and, in turn, can be threatened and harmed by us). However, people can and have buried their collective bonces in the dust for millenia past - that's not going to stop over night. And Social Media allows us to monitor and talk about this Big Society in a way we couldn't before.

Also, when we do talk about things online, we're not limited to voice (or text). When Deb and I talk with family and friends, we're able to do so face to face. Skype really has made a huge difference to me. When I am away from my family, being able to call and both talk to and see them makes me feel much more at ease. Also, you get to see dogs who have relatively little to say on the phone.

Finally, there are the pictures. Call me infantile, but I like pictures. Picture books, photos, paintings, sketches, gifs... A picture paints a thousand words, and with flickr and facebook, instagram, 500px and yfrog, our world is full of beautiful, multicoloured thoughts and feelings we might never see otherwise - especially if we can't easily leave our rooms. I love it when someone photographs their lunch. I welcome every picture of a yarn-bombed tree. Each carefully quilled portrait and beautifully lit news-story. The internet, however I access it, broadens my horizon quite literally and I love watching the world through the eyes of the infinite. 

Other than the physical comfort afforded by my phone, there is an overarching theme to all these things - the lack of mobility that disability enforces, and the shrinking of ones' world thanks to social prejudice. But not only has tech allowed us access to socialisation, shopping, learning and the free and natural beauty of the world (and people's interpretations of it), it has also allowed us the opportunity to project ourselves into the public conscious. The possibility that someone can see your face rather than just talking to you on the phone** means that the exquisite variety of disabled faces become less radical, and so makes them more easy to appreciate and admire. Social media allows for energy-efficient communication with a large number of people, and also helps to empower (even though I worry about the nature of some disability cabals on the net). And If I can watch a video on woodworking and comment on it as a disabled man who has an interest and appreciation of such things, then the carpenter who made it can know that someone who can't just pick up a hammer cares as much as he about such a large part of his life. We are joined, no matter how briefly, and the social restrictions and prejudices fall away. Tech has the great potential to project our souls out into the world where it is not easy for us to be. And I believe that this will help to change the world in ways that will make it easier for us to inhabit it.

So thank you, world. Thank you for bypassing some of the restrictions on my life through widely adopted tech. It makes me happy and hopeful.

*I even had an alarm go off on the way to the registry office - In 15 minutes you need to get married, my phone told me.
** The possibility of skype calls with doctors is something I'm very much hoping for.

BADD2013 - A Sticky Situation (1/3)

There was a time when speech recognition software was about as specialist as tech got. I remember in the dark old days of Dragon NaturallySpeaking 4 wowing people with the barely understandable translations offered me after an hour training my PC to the individual cadence of my speech by bellowing out, steadily, in a Newsreader voice, a section from Alice in Wonderland. Things move on, and now, not only has the process simplified remarkably and become a genuine alternative to typing (almost), the integration of this tech into smart phones has removed the associations it once had with disability.

I recently read a wonderful article about disability in anthropology/archaeology on the same day that I read through one of Deb's blog post comments in which she explained how she interprets the Social Model of Disability. There is a simplicity about the concept I greatly admire - in fact, more than that, it makes me feel safe. All the best theories do, as they pin down the messes of reality into a manageable lump. So, in the words of Aimee Mann, this is how it goes;

Society is what disables us. And that disability can be caused by many different things - physical impairment, emotional distress and even prejudice itself. The impairments are unique and different, but we are united as a group by our universal experience of social disablism. 

My father is a great man. He has always kept me safe, whilst encouraging me to be as independent as possible. He has never felt embarrassed about my inability to do normal things, and, indeed, has never acted in a way that has encouraged me to feel embarrassed about my health and the accommodations needed to live with it.

In the last couple of years, my father's health has taken a turn for the worst. I always knew this would be a difficult time. Several times my father has said "It's a good thing you're poorly - I'd never cope as well as you do". And, indeed, he doesn't. But still, I wasn't expecting to hear from him what I did just a few months back.

"Well, I went down to the Post Office today with my walking stick looking like a really doddery old man."

I have been using a walking stick for many, many years. There was a time when I was embarrassed to use it; propping it out of sight if there was someone about who I didn't totally trust. But as I had fewer falls, felt more stable in general and could get in and out of chairs without copious groaning, I was able to get over it. And getting over it was, as with pretty much every problem I've ever had, something my dad's laid back attitude helped with.

A Pillbox sensitively labelled "Baldwin's Nervous Pills"

And yet he really struggles with his stick. And that's awful. Because he doesn't mind using this pillbox I bought him a while back. And perhaps most importantly because he's the one who actually bought Dragon NaturallySpeaking all those years ago. He sat there just as I did reading aloud out-of-copywrite text for hours on end to try to get the computer to recognise what he was saying. He didn't feel bad about it then - it was just another gadget to get excited over.

And this is what is so interesting - tech of whatever kind falls into a spacific space.

•  Acceptable tech for general use. 
• Specialist tech that remains funky. 
• And specialist tech for the 'Special'. 

And it's not as if a walking stick has always been for the 'Special'. Take Beau Brummell. There's a rather wonderful statue of him in Jermyn Street, London - a road almost exclusively populated by posh men's clothing shops (what do you mean you didn't think I'd know about shops like that?). He stands there looking rather elegant and extremely confident. And although I'm not sure that a stick that delicate would be resilient enough for a chap of my weight, he brandishes it without the slightest hint of embarrassment.

"To be truly elegant one should not be noticed." 

Brummel said that. Now, I'm not sure I fully agree with him, but presuming that he wanted to be elegant, he wasn't going to be doing something which he felt would make him look "Special" in that horrible inverted commas kind of way. It was a gadget which was as stylish as it was functional. And this is why we should rethink the walking stick. I've seen some pimped walking sticks complete with torches, grabbers and panic alarms. But that doesn't equate to style. Style needs something a bit less worthy...

So my ideas for a new line of respectable walking sticks appropriate of all walks (and staggers) of life;

• Sword Stick - there is something undoubtedly cool about a sword stick. I know they are incredibly illegal in most countries now. But in the UK at least, there has been a dramatic increase in incidents of disability hate crime on the streets. So would arming the disabled populace really be such a bad idea?

• Medicinal Tipple Stick - I do not want in any way to encourage irresponsible use of alcohol (which says a lot about me when I have no problem at all with suggesting that disabled people should hack their tormentors to pieces), but the tipple stick was cool for many of the same reasons why I always wanted a sword stick. So, rather than secreting a stash of booze under the handle of your walking stick, why not replace that with a stash of medicine? But only the good stuff - the stuff a non-disabled person might be willing to knock over a Boots for. 

• GPS Walking Stick - Fujitsu actually got to this one before me, and didn't they do a nice job?  The GPS stick reminds me of these rather lovely GPS brogues but makes much more sense given that the shoes rely, not only on having two feet, but also an unrestricted view of them (and, having discovered a particularly nice red-wine soaked goats cheese at Tesco, it's possible that in a few years time I might not be able to see my feet any more). 

Obviously of the three, the GPS stick is the most sensible.  It is also, however, very exciting - we can incorporate tech into so many things, and with good design we can make them desirable and stylish. Imagine a swagger-stick with built in bluetooth connecting to your phone. A series of LEDs along the shaft of the stick scrolling messages from your twitter stream, sharing with the world the collective wit of your social circle.

Screenshot from the film Wall-e showing a levitating
power-chair user drinking from a large cup whilst our
hero, the yellow robot Wall-e, watches.

The dystopian horror of universal mobility in the otherwise excellent film Wall-e is its one flaw - the truth is that as soon as a technology loses its stigma, we open society up to true equality. And that equality does not mean that we all become lazy - indeed, that attitude just demonstrates an intrinsic belief that people who cannot walk are lazy wasters who aren't really trying hard enough. And it's all madness anyway - people expend energy driving themselves when they might be chauffeured via public transport. They walk and run and cycle for FUN. And they even visit gyms. And they do all of those things whether they're disabled or not.

Lazy people will always be lazy. But most people aren't, and having pieces of technology available which can help them when they need it and which, most importantly, don't make them feel doddery when using it, will only help to keep them active and productive longer.

BADD 2013

Tomorrow is Blogging Against Disablism 2013. This year I shall be writing not one, not two, but three shiny new posts in honour of Blogging Against Disablism Day 2013. This event allows people from all over the world to unite, writing on the theme of disability in our less than perfect society. The perspectives are as broad as you can possibly get, and I hope that my thoughts will help towards creating an interesting snapshot of the lives of disabled people in 2013.

So come back tomorrow for my three posts in honour of #BADD2013!

Wrong Wrong Wrong

Far better and more politically astute bloggers will write (and have already written) about the silliness in government arguments surrounding reform of the DLA (Disability Living Allowance) benefit.  However, having woken up to yet another repetition of the silliness, I thought I better write down why the arguments are wrong, even if reform is important.

There are several points I'd like to answer in this BBC article  as briefly and clearly as I can (thereby proving why I could never have a career in politics)

"Mr Duncan Smith said the number of people claiming it had risen by 30% in recent years."

In recent years: don't you just love when a statistic is varified like that?  What are recent years?  Ask a ten year old and ask an eighty year old and the difference will be very great indeed.  And so, I will qualify my next statistic.  Between 1994 and 2011 there was a 34% increase in the number of cars on the road.  Now obviously we're all aware of this (apart from the ten year olds) and it's no big shock.  But if you say it about people who live lives which are often unseen by many, who you're insinuating are taking money unfairly, it's a shocking thing.  Mr Duncan Smith might further qualify by saying...

"It's been rising well ahead of any other gauge you might make about illness, sickness, disability or for that matter, general trends in society."

...but I don't believe him.  I mean, the general trend is less than the increase in cars on the road.  There are more people surviving dangerous illness and injury.  There is better care for people with mental health problems (even if it's still woeful).  Disabled children are kept alive longer.  And, of course, of the 34% increase in cars, there are now plenty made in such a way that you're less likely to die in an accident.  And how many of those 34% collide with pedestrians?  Nice soft bouncy bonnets can only do so much.

To suggest that there's something sinister in the increased numbers of DLA claimants is just weird.  I mean, between 2009 and 2011 there was a 100% increase in Prime Ministers who claimed DLA for a child.

So what does Mr Duncan Smith claim is the reason for the increase?

"A lot of that is down to the way the benefit was structured so that it was very loosely defined..."

If something is loosely defined to begin with, why would the number of successful applicants suddenly increase later on?  The only thing I can imagine is that 1.) he's suggesting that people have somehow worked out loopholes that allow them the benefit, or that 2.) we've developed disabilities in such a way as to fit the criteria, tricksy little things that we are.  This is so silly and strange I really can't work out how to argue against it other than saying it's wrong.

"Second thing was that in the assessment, lots of people weren't actually seen. They didn't get a health check or anything like that."

This really annoys me.  Every single flipping form I've filled in, I've had to go through paper-work / google in order to find out my GP surgery address.  I have to do this so that the people in the benefits office can contact my GP and ask if I'm lying.  Surely, rather than go to the cost (and it's cost we're arguing against) of sending someone to assess me (and let's not even get on to whether that person's qualified or even rewarded for failing you) it'd make more sense to trust a qualified doctor who knows at least a little about my life?

Also, there are some conditions which are quite 'obvious'.  If one of the 34% extra cars were to have had the exhaust fall off and you rang up the garage to tell them and they said 'yes, well, you're hardly qualified to say if the exhaust has fallen off and whether this actually necessitates a repair...' you'd be pretty upset.

Of course, condition is not impairment and we should remember this before we get too angry - there is a reason the form goes beyond diagnosis.  MS is a good example of a condition which can be highly variable.  But surely the need for greater face-to-face assessment is minimal if we remember that all forms sent back should have doctors details.

"Third problem was lifetime awards. Something like 70% had lifetime awards, [which] meant that once they got it you never looked at them again. They were just allowed to fester."

I love the use of the word 'fester'.  The gorgeous writer of Diary of a Goldfish, creator of all things magical and light of my life, has a pregnant sister.  Very soon this will make me an uncle.  Yes - I too could be Uncle Fester.

DLA is about not letting people fester.  It's about giving them the ability to pay for the expensive needs of their disability and so allow them to live as normal and equal a life as possible (allowing them to, say, pay for someone to take them out rather than just festering at home...).

Do I really have to point out the major weakness to this?  Do I really?  Does anyone fail to see the really really really silly really really really wrong wrong wrong thing here?

Disability can result from conditions and injuries which are permanent.

At school I had a friend called Nigel.  He had a condition which has, by now, killed him.  There was no way he would recover.  No way his care requirements would get less.  To burden his family with reapplying for benefits for a condition which eventually killed their son would be cruel.

There are people with mental impairments which will never go away and they will always need help.  There are degenerative nerve conditions, bone and joint problems, mental conditions, cancers and tumours and lions and tigers and bears.  There are so many awful things which DO NOT GO AWAY.

If another one of those 34% extra cars were to have its engine blow up in such a way that the entire front end was mangled beyond repair and, every few years you had to contact the DVLA to confirm it was still un-drivable, you'd get pretty fed-up.  And then, if you thought about the time and money it takes to administer that check, you'd be horrified.

So that's it really.  Most people agree that Disability Benefits need to be reformed.  There's wasted time and money in administration, disabled people are put in positions of fear and dependence, and it's all talked about as if it's a charity rather than a part of NATIONAL INSURANCE.  Those things should change.

Which brings me to my final point.  If one of those 34% extra cars was damaged by an accident and you'd paid your insurance premiums, would you be happy if someone then started droaning on about the high number of insurance claims and how much this was costing them, and how they were going to cut the number of people to whom they pay out?

Blogging Against Disablism Day 2012 - Clippity Cloppity Goat and the Troll

For an audio version, either stream using the player below, or click here for the MP3 file.




Clippity-Cloppity Goat and the Troll under the Bridge.

Clippity-Cloppity Goat was a young kid, and like young kids everywhere he was easily bored.  He liked going out and about, hoping he might find something exciting and different.  But given that he lived in a field, this was pretty difficult.  After all, one patch of grass looks much like the rest.  So one afternoon, with the sun high in the sky, Clippity Cloppity Goat let loose the gate and scampered out along the path.

He felt excited and free.  The sensation was intoxicating and he laughed.  He splashed in puddles, bleated at the goats he saw in other fields and butted trees to show them who's boss (and got a bit of a headache as a result).  But, being a young kid, he soon began to get bored.  And that's when he saw the bridge.

It wasn't a particularly special bridge.  The road above was paved and rutted.  But underneath in the dark, mingled with the burbling noise of the little river the bridge forded, Clippity Cloppity Goat could hear a deathly growl.

Now, it's fair to say that the goat was at least a little nervous.  What could possibly be there?  He'd heard all manner of stories about the weird creatures that lurk in the dark, never going out anywhere.  He'd heard that they were aggressive and hateful and were part of the reason that all the fields around here weren't as green as they used to be.  Wanting to be a big ram, Clippity decided he'd make a point and have a laugh at the same time.

So Clippity Cloppity lived up to his name.  He strutted up to the bridge and Clippity Cloppity-ed his way over top, stamping as hard as he could on the cobbles, whilst shouting in his loudest voice;

Trolls who live under bridges smell
They spend our hard earned cash
Claiming not to be very well

Trolls who live under bridges are bad
They never go to parties
And they never look glad

Trolls who live under bridges deserve to die
They're a waste of space and air
And everything they say's a lie

Of course, as with all people who show off, Clippity Cloppity hadn't actually been paying attention to what he'd been doing.  Somewhere around Verse Two he'd climbed up onto the edge of the bridge and, still stamping, had managed to dislodge one of the stones.  With the final line he gave a great stamp, which echoed.  But as the echo died, the noise was replaced with a scraping and the great block upon which Clippity was stood gave way and the young goat was thrown down into the cold water below!

He scrambled about in the river, choking and crying in fear.  You see, he'd grown up in a field all his life and he'd never had anything to do with water deeper than a puddle.  He couldn't swim!  He shouted out for help, not really expecting any reply, but he was desperate!  What could possibly save him?

It was then he heard it.  The growling noise had stopped, and in its place there was a calm and gentle voice talking to him.

"Relax little one." said the Troll, his voice deep and tired-sounding, "I know this river well - I've watched it every day for years - and you've fallen on the shallowest part.  If you relax and put your hooves down, you should be able to stand on the bottom."

Clippity Cloppity, gasping and thrashing, was almost too scared to take this in, but there was something about the calm, caring voice that made him trust it and he stuck his feet down, throwing his head up.  And the Troll was right - he could stand on the bottom!  And although the water was very cold and the current quite fast, he was able to walk towards the deep voice.  As he neared it, the water got shallower and shallower, until he was, at last, out of the river and shivering on the bank.

Blinking the water out of his long lashes, the goat looked around him.  His eyes were used to the bright sunshine on shiny grass, but under the bridge everything seemed shades of black and green.  Eventually, though, his eyes adapted and he could make out a large shape comfortably ensconced in an alcove.  The hard stone was padded with great blankets and pillows as big as a Ram.  The Troll himself looked very strange, having many features which were unlike those of any goat.  Clippity felt scared, but he was too tired and cold to just run away.

"Who are you?" Clippity stammered.

Looming out of the darkness, the Troll's face slowly became distinguishable.  It certainly wasn't the kind of face Clippity was used to seeing.  And being a young kid, he saw lots and lots of faces.  In fact, he thought the world was made entirely of the kind of faces he was used to seeing.  So he felt scared.  And yet, the face did not seem angry.  And the more he looked at it, the less scared he became.

"I'm Arnold" said the Troll.  And this surprised the little goat, as Arnold seemed like the least scary name he could imagine.  Arnolds should not live under dark bridges.

"What are you doing here?" asked the inquisitive little goat, his whiskers twitching in curiosity.

"I live here" breathed the troll, the growl of his voice distant like far off thunder.  "I am not able to leave the shade of this bridge because the sun hurts me.  I was born differently to you.  My limbs won't hold my weight.  So I stay here on my own."

"On your own!" exclaimed Clippity.  He had been away from his herd-mates only a few hours, and yet already he felt the distance between them and longed to return to his lush, green field and be surrounded by all the people who made him feel safe.  "It's weird not wanting to be around people." he declared, stamping a little hoof on the muddy bank, the damp little clop echoing in the dark spaces above him.

"But I do want to be around people.  I do talk to people."  The troll gestured to the water, one huge hand skidding across the silver surface.  "My friends all live along the river and we send messages in the water.  Just this morning, my good friend Emma wrote me a lovely letter on the back of an oak leaf.  I fished it out with this."  He produced a willow wand, at the end of which was a simply lashed hoop, criss-crossed with bind-weed.  "All of my friends are in the net."

And he was right.  Clippity watched open-mouthed as Arnold up-ended the net, letting leaves, bark and sticks rain out on to the floor.  Each one was inscribed and marked - some times with text, sometimes with pictures.  One particularly beautiful silver-birch twig was even decorated with multi-coloured flowers.

At this very moment, a sand martin swooped low over the water, its sharp, pointed wings skimming the surface.  It caught a fly, swallowed as it banked, and came around again, calling as it passed.

Arnold's face screwed up and he chuckled as only a troll could.  The hair on Clippity's neck stood on end.  Eventually Arnold explained "As well as the net, we have learnt to communicate through birds who send our messages.  In return, we keep the bridges clean and tidy for their nests and keep them safe from predators.  It's useful being able to 'tweet' a friend, especially if they live up-stream...."

"But it's not right being stuck in one place."  Clippity continued, feeling, though, that perhaps the things he'd heard might not be entirely true.  He was also intensely aware that for all his short life he'd been stuck in the same field.  It was only today that he'd finally broken free to see more of the world.  And he guessed that soon he'd have to get back.  It was hard to tell in the darkness under the bridge, but the sky outside seemed to be getting darker.  He would be able to find his way back in the dark, wouldn't he...?

"Stuck in one place?" Arnold said, with surprise in his heavy voice "As well as the messages I receive from my friends, I can watch the entire world go by on the river.  I can smell the mountain soil on the water after heavy rain has washed it down to the sea.  I can watch the cherry-blossom float on the surface when there's a strong April wind.  I hear the trout splashing on its journey between river-bed and sea-deep.  What am I missing?"

And Clippity could not answer.  Although not able to join in with the same games all the other goats enjoyed, Arnold clearly was the same as he.  They both enjoyed talking with their friends, watching all the creatures around them, and the smell of the world after rain.  And they were pretty important things.  But still...

"Why do people think you're so scary, then?" asked Clippity, sitting down in a comfy spot as he looked up at his new friend and listened, patiently.

"I have to sleep a lot during the day.  Whenever people come along, it's likely that I'll be snoring.  And when I snore, people go away, scared.  I can't help it.  If only they'd stop and wait, I'd wake up and they'd see I wasn't to be feared."

Clippity saw a big tear well in the dark eye of the troll.  With a small 'plink', the tear fell into the river.  Perhaps, Clippity thought, another troll might notice it and send a bird to check that everything was alright.  But just in case, Clippity nuzzled the great troll gently.

"I'm sorry," he said "I just didn't know."

The great Troll patted the little goat on his bristly head and said, gently, "It's alright, little one.  It is normal to be scared of the things we don't understand.  What isn't right is to ignore reality and truth when we see it.  It's not right to make up hateful stories.  But you have found the truth and understood it.  That is the meaning of all great quests."

Clippity felt a huge sense of pride, but whilst his heart was full and warm, he shivered against the cold wind which whistled under the bridge and, when he turned back, he was shocked to see that the world had turned dark behind him.

"Oh no!" he cried, "It's got late and dark and I don't know my way home!"

Clippity began to cry, far more scared now than he had been when he'd heard the snoring of a hidden troll.  How on earth would he find his way back to his family and friends?

But the troll patted the kid again and quickly reached for one of his stores of dried leaves and delicately wrote a note on it.  This was placed, gently, into the water where it was quickly taken away by the fast flow.  He then carefully tapped on two of the martin nests which were dug from the fragile bank of the stream.  In a strange language he spoke to the birds who had been resting, and, like bullets from a gun, they flew out into the air and disappeared in the blink of an eye.

But Clippity hardly noticed this.  His vision was clouded by tears and his body felt trapped - trapped under a water of despair and floundering as surely as he had when he fell into the river.  He shivered again.

He gasped with shock when a heavy weight of wool fell around him.  Arnold was making for him a bed of his own blankets and pillows.  Too upset to say anything, Clippity collapsed onto the soft space and, very soon, was snoring almost as loudly as the big troll who was now his friend.

--

Clippity awoke with a start.  He was scared because he didn't know where he was.  But soon he remembered and once again was overcome with remorse and upset.  At that moment, however, he heard a familiar sound.  It was the clank and clamour of a rough bell.  The bell he knew so well.  It was the bell that, for all his life, had been tied around the neck of his mother.  And here she was, appearing in the glow of the fire Arnold had built especially to keep little Clippity warm.

"There you are, you young rascal!" she called.  "If it wasn't for your new friend, we'd never have found you.  Thank you, sir," she said, bowing her head slightly with a rattle from the bell, "We'll never be able to repay you for keeping our little one safe."

The troll shrugged, "It wasn't really me, I just sent out a message.  My fellow trolls had heard young Clippity in the woods and, later, had heard your folk searching for him.  With the help of our birds, we were able to track you down and guide you."

And so, with a sleepy backward glance at his new friend, Clippity made his way back home under the watchful eye of his mother (who would later have many things to say about going off on your own and the real dangers of the wood which would make a troll look like a kitten).  But from then on Clippity knew that wherever he was, he was never alone.  Even in the dark places and where people seemed strange and different, there was always a good chance that there would be things shared and commonly valued.  He understood the difference between 'different' and 'bad'.  And he also knew that, whatever he did in the coming years, he would set out to find truth and understanding and never to give in to fear.  Because truth and trust would keep you safe even when the night falls.

Blogging Against Disablism Day 2012 - Intro

For an audio version, either stream using the player below, or click here for the MP3 file.



I've been thinking about trolls lately; those Scandinavian beasts of mythology.  Blame it on my recent viewing of the fabulous Troll Hunter, a sharp comedy which is very much worth watching.  But that's not quite what I want to write about on this, Blogging Against Disablism Day 2012.

I believe strongly that we live our lives through the rules of stories.  Fables, religious texts, soap operas - they all use story to teach us about events we may face through sometimes heavily veiled yet strongly appropriate examples.  As we grow, the stories continue.  We've seen in the last few years a massive increase in the number of newspaper headlines denigrating the disabled.  With them has come a number of set stories - the person claiming benefits who runs a marathon, the blue badge user who drives a Merc, the heroic military amputee overcoming injury...

This makes it very difficult to be a normal disabled person.  That might sound silly - obviously no disabled person has an easy life...I mean, they're disabled.  But, when you're new to it all, looking into this mass of negative stereotypes, how can you assume that identity with a good heart?  It'd be like an electrician watching 'When Cowboy Tradespeople Make Old Ladies Cry' only to exclaim after the first grief stricken segway into advert break 'I'm a tradesperson too!'.

There was a documentary last year - Katie and Her Beautiful Friends.  The documentary looked at people who had various disfigurements.  The idea was that Katie helped these people to grow and become confident and assume a position as ambassador to other people dealing with disfigurement.  There were some great people on there, but none who would (at least on screen) identify as disabled*.  How could they?  The position they were aiming to fill has nothing to do with the story of disability we currently see everywhere.  These people were going out, facing the world, working and achieving.  Admirable achievements, to be sure.  But it precludes them from the story of disability.

I recently had a reply to a letter I sent to a member of parliament.  I will keep it (and their name) private, but at the end of said letter, the MP said

In order to better public perceptions of disability, you need to get out and about and show the world how great you are.

I paraphrase to make it significantly less long winded.  But the message is clear.  Disability in the traditional storybook sense is not appropriate.  We hide away in the dark.  We are trolls - not human, not attractive, not worthwhile.  The only way we can be worthy of not being abused (which was the point I'd made in my letter) is to recreate who we are by flinging aside any impediment and parading through the streets, bursting into song and, preferably, saving small kittens from trees whilst climbing the nearest mountain.

I disagree.  Rather than change who we are (which is impossible...) we need to change the stories.  We need to rewrite the nursery rhymes.  They are the foundation block of all narrative we use today (including newspaper headlines, government statements, etc) and how we learn morality.  And all of this is, I believe, a moral issue.

So in my second post (I thought I should break them up to save you from overload) I will rewrite the Troll Fairytale.  I suggest you print out a copy for any passing parents you see.




*it's important to note, of course, that this might have nothing to do with the people involved.  It's entirely possible that this was done in editing.  It's also important to say how much good the people and the programme did.  It's just a shame that their positive story isn't really related to disability, even though some of the injuries are certainly physically disabling and, of course, that societal reactions to disfigurement are, and always has been, disabling.

Graduation - The Aftermath

Graduation, I am glad to say, is now well and truly over.  That makes it sound like it was bad in some way - far from it.  In fact, we even coped with the physical damage of the trip better than we expected.  Even so, the day went by in a black poly-cotton cloud of pain and movement.  Now, however, looking back and feeling less poorly, I'm able to enjoy the day more and more.

I do not, and never will, like London.  However, there was something of the adventure about getting into the capital, settling into a cheap hotel room and watching the best of a limited number of television channels.  We cobbled together a rather lovely meal from a collection of tubs from an M&S and, aside from some noisy characters disturbing our beauty sleep in the early morning, we had a relatively good night.  I got my first experience of a wet room and, had I bought my tools with me, I'd have pinched the bathroom tap (it was one of those bubbly water-saving jobs).

Arriving at the Barbican was trickier than expected thanks to some road closures, but we got to our reserved parking space (just a little way from the suspiciously heavy looking Range-Rover/Bentley Royal convoy - I'm sure the Citroen would have fitted in nicely) and very soon were in and rendezvous-ing with my sister.

My sister's ten year's older than I, and our relationship's developed in interesting ways in recent years.  I think really we have more mutual respect than most siblings without being necessarily 'close' in the ways most people would understand the term.  I was really pleased to have her there, and she certainly leant a strength to our little quartet.

A wheelchair always tends to throw people into a panic, and the graduation was no different even after a few emails confirming the situation before-hand.  The Barbican staff were great, though, and getting on and off the stage was a painless freight lift affair.  Although my 'I always said I'd go up in the world if I went to university' joke mid-lift fell somewhat flat...

Sitting on stage throughout proceedings was something I'd rather have done without.  My father sat with me and I was very glad for that.  I was half afraid if he sat in the audience he'd risk falling asleep and missing the cue to push me across the stage!  And he'd not be blamed for falling asleep - there were a huge number of people collecting degrees.

And I think that's one of the things I like the most about being a member of the International arm of London University, even if I am not actually International.  The sheer range of cultures, subjects, ages and styles were wonderful.  It was a real reminder of what a broad and special world we live in.  Even, as Deb pointed out, watching the different ways people walked across the stage - striding confidently, hurrying self-consciously or, as in my case, wheeling whilst looking like my hamster had just died.  One of the things I value about my degree is its all encompassing nature - art, architecture, literature, history, sociology...the whole shebang.  And it felt appropriate, sitting there, the only student in the afternoon session receiving a degree in Classics, surrounded by fellow students from the four corners who had studied science, law, english, history, computing etc.  The world doesn't change.  It is eternally varied.

We got home in surprisingly good time, and Deb and I thoroughly crashed.  But we're now over a week on and recovering well.  The memory of the pain fades and leaves a pride in being part of such a huge thing.  It's not something we're likely to replicate in the future.  It's something we'll always remember and treasure.

Graduation

Tomorrow I graduate.

And given how abstract the whole thing is at the moment, I almost feel like I'm suddenly going to fade off beautifully from head to toe rather than take part in any kind of ceremony.

Honestly, the whole thing's rather intimidating.  To get to this do (in the middle of London) we need to travel today and stay overnight.  Deb managed to find us an appropaite hotel (appropriate means relatively cheap in these circumstances) and then tomorrow morning we're off so that I can be wheeled in front of someone to recieve a bit of paper.

And yet there is a part of me which thinks these kind of dos are important and something I've not really had much of in the past.

It's a bit like birthday parties (likewise something I've not much experience of) - people gather to celebrate what you've achieved.  Because birthdays are less about a passage of time and more about what you've become or are becoming.

My degree is a funny thing.  Given my inability to work, there's a part of me which thinks of any formal education as a waste of money.  But this is obviously rubbish.  The extreme result of thinking like that is that any poorly kid should be excluded from school for money reasons (something which looks more and more likely given the way that the disabled as being treated in this country).

And yet the degree is one of the very best things I've ever done.  I worked very hard at it, felt that massive rush and excitement as I understood and even expanded upon the ideas of countless academics before me.

And the great thing is that with a classics degree, you're left with knowledge that can lead you through almost any situation.  Even a graduation.

The only problem is, I can't think of anyone at the moment other than Petronius who, when ordered to commit suicide by Nero did so by cutting his wrists.  But then promptly bound them up so that he could spend the evening partying and writing out a list of all Nero's perversions before letting the bandages loose.

So rather than anything quite so drastic, here's my way of getting through graduation.  Photographic proof that I have a brain.