Wednesday, 1 May 2013

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.

Registry office group portrait
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, Stephen and partly made shoes
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)

Sophie and Stephen reading
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. 
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.