Looking Up

Dancing/Horses

Thu, 29 Jul 2010 20:48:17 +0000

So, last night we went to Sadler's Wells to see Eonnagata.

The venue is certainly one of the best I've been to in terms of access for wheelchair users, right down to the car parking space I was able to book free of charge. It's so encouraging when a relatively recent conversion of an old venue manages to get access so right. Even more frustrating when a venue fails, as a surprising number of new-builds do (names may follow, but I really don't have the energy tonight, having spent the day hosting Rosalie's fifth birthday party).

Anyway, last night...
I must confess that dance was never a medium that I found easy to enjoy. The idea of telling a story through movement always seemed rather limited to me, imagining as I did that it was mainly Swan Lake with a variety of different costumes to identify whether it was contemporary/classical, etc.

Last night was only my second experience of live dance, my first being less narrative in the form of Two:Four:Ten as reported on Looking Up at the time. For my latest experience there was very definitely a narrative, some speech, a few subtitles and even a song. There was also some great sequences, stunning lighting and inventive use of tables (very cryptic, but it will make sense to anyone who's seen it). I have to say that again I really enjoyed it. There was an episodic feel to the piece which made it easy to stay involved with bits that I didn't connect with, as I was safe in the knowledge that something else would be along soon.

The most baffling 'episode' of the evening came after the show. I went to use the disabled toilet only to find that it was engaged, and a rather portly American woman was waiting by the door.

As I approached, she looked up rather sheepishly and said something which I didn't fully understand. I assumed that I had misheard her making some apology for a companion who had opted for the disabled toilet because it was nearest the exit.

However, when the door opened the occupant turned out to be a very elderly gentleman, and it was only after he left the cubicle and the lady darted in that I played back her comment and realised what she had said.

It was clear that she was the elderly man's companion, and I could understand that she would be reluctant to leave him alone while she went to find another toilet, so I had no issue with her using the disabled toilet. It was what she said. Her sheepish look was accompanied by this statement:
"I'll be really quick, I can pee like a horse."

Try as I might, I could not prevent my mind becoming filled with the image of her covering the bathroom floor with paper towels before trotting around on all fours emitting a stout stream of urine and the occasional whinny.

Work it...

Sun, 25 Jul 2010 08:48:32 +0000

R recently had her friend M over to play. They petitioned hard for me to participate, but I had work to do.
M asked, "Do you do work? What kind of work can you do."
R explained, "He does work on the computer. Everybody works."
M: "Except for burglars."
I joined the conversation. "Well, burglars work. Sort of. It's just a different kind of..."
My voice tailed off. What on earth am I saying? Burglars don't work. They steal stuff from other people's houses. That's not work. Yes, they might call it doing a job, but that's different.

I had the sudden realisation that the isolation that comes from working at home in a solitary pursuit has distorted my view of the world. This effect has been made more severe by spending so much time in the company of five year olds. So much so, that I have begun to imagine life outside as resembling a Richard Scarry book...

HEMS visit

Wed, 21 Jul 2010 13:36:53 +0000

To those who may have access to the UK's print media, a notification:

The Times tomorrow will contain a piece I have written about my day spent with the fantastic HEMS air ambulance team, including a reunion with the good people who scraped me off a garage roof in Muswell Hill five years ago.

To those who are outside the range of The Times in print:

Unfortunately, I will be unable to direct you to a URL of the piece unless you have opted to sign up for the paid online content that is now the only way of accessing The Times online. In case you have not, then just take my word for it...the piece is a fantastic example of really great writing. It has tremendous emotional depth, atmospheric characterisation and side splitting humorous asides. All delivered in my usual modest, self-deprecatory style.

Honest.

scary stuff.

Sun, 18 Jul 2010 20:21:38 +0000

Today I succeeded in scaring myself half to death (bad paraplegic joke). Really, seriously scared.

I was rushing around the flat, wrapping presents for Penny's birthday and trying to tidy up at the same time. As I approached the desk to reach for the roll of paper underneath, I reached out to grab the edge in order to help me to bend forward in a controlled way. Unfortuntaely, my hand slipped off the desk, and I fell forward, hitting my face on the edge of the desk (no major damage).

The blow to the face wasn't scary. However, the jarring whiplash effect on my neck and the subsequent pins and needles in my right hand? That was terrifying.

I'm sure that most people may have found the experience a little unnerving, but with my knowledge of spinal cord injury, I found myself reeling and more than a little panicked.

Suffice to say, the pins and needles abated, and I am left with a sore spot between my shoulder blades which worsens if I tilt my head backwards. I'm sure that too will pass with time.

But the whole experience has made me appreciate even more just how random a spinal cord injury can be. I have met several people who have high level SCI as the result of a fall which resulted ion their chin hitting an obstacle and snapping their neck backwards. But surely no-one has suffered two, completely unrelated spinal cord injuries have they?

The other anxiety rekindled by this experience is that of a concerned parent, struggling not to view every single physical activity undertaken by his beloved daughter as fraught with peril and almost certain death.

If I can't even look after myself during a routine stationary handling incident in the home, what hope do I have of protecting her when she inevitably decides that she wants to join the circus?

First steps on the journey

Thu, 15 Jul 2010 16:58:53 +0000

Now we're talking...
When people ask me about the future, the question is often, "Do you think you will ever walk again?"

This usually means,
"What about stems cells?"
or,
"Do you think they will ever be able to cure you?"

As I have often said in the past, the severity of my injury (90% severed cord, vertebra fused out of position obstructing the spinal canal where the cord would have to be rejoined) means that I am way down any list of people for whom stem cells may offer a solution to spinal cord damage.

Indeed, I usually follow this explanation with a reference to Wallace and Grommit at this point (See previous entry).

But perhaps my kind of future is closer than many have previously assumed. While the following technology is still a bit on the clumsy and cumbersome side, it does offer the first step (bad pun) towards some kind of external solution to internal damage.

If you compare Rex with this previous development in Israel:

And just so you know that this will definitely happen, here's proof of interest from the most influential section of society when it comes to technological innovation. Yes, the Military are getting involved, too.

Ending up or beginning.

Wed, 14 Jul 2010 16:10:46 +0000

Yet again, I find my thoughts provoked by Andrew Farrow's very fine blog, which coincidentally touches on similar thoughts about wider social perceptions toward those of us in wheelchairs.

In Andrew's case, he makes reference to people asking how he ended up in a wheelchair. Like Andrew, I have absolutely no difficulty in talking about all aspects of my spinal cord injury, perhaps even when people would rather I didn't. I wrote a book about it, fer goodness sake.

That said, it is interesting how some people feel that it is a perfectly reasonable question to present to a relative stranger ( I have just had to re-type that, as it came out first time as stranger relative). It's difficult to know where the line is drawn. Would people ask of an amputee,
"How did you lose the leg, then?"
Although this is perhaps a poor comparison as many amputees wear prostheses that serve a cosmetic as well as functional purpose. While I may be guilty of some measure of wheelchair vanity, I could never be accused of trying to disguise my paraplegia (I should like to point out at this point, that I am NOT suggesting that wearing a prosthetic limb is some kind of preening exercise in vanity. As evidenced by a double-amputee friend of mine gleefully explaining that legroom on long haul flights is no issue for him. He simply removes his legs and has them stashed in the overhead locker, thus enjoying business class room for economy prices).

As far as questions go, I am always happily surprised by the level of curiosity shown by children, something I applaud heartily. My hope is that in sating this early curiosity, we can produce a generation more aware of the issues faced by disabled people.
But where it gets tricky is for people who have been in a wheelchair all their lives. For those of us who have had some experience or contact with spinal cord injury, there can be a tendency to assume that everyone who is on wheels 'ended up' that way. Far from it, as I have been embarrassed to discover on a number of occasions when I realised that my SCI world does not encompass every wheelchair user. On such occasions, I feel like such a Jonny-come-lately.

It's also frustrating when one accident seems to be the defining moment in one's life, as if people will never see beyond it. People who know me will often behave exactly the same toward me as they used to before I became a wheelchair user, and that's great, but when someone only spends a relatively short time in my company, I can sometimes find myself volunteering the information, as if I feel the need to say "I'm one of you." This forces me to question how my attitudes towards disability have or haven't changed.

But there is another, more emotionally charged scenario to consider. In my time working with other spinal cord injured people, I have met a number who suffered their injury as the result of an unsuccessful suicide attempt. So, with such possible circumstances in mind, lets get back to the complexities of asking, "How did you end up in a wheelchair, then?"

You, there. Eu phemism?

Fri, 09 Jul 2010 12:11:50 +0000

Atttended a very fine opening night for the very fine BHVU open last night, which resulted in me feeling particularly jaded as I watched R deliver her line and sing a couple of songs at school assembly this morning. All very sweet, but I find the level of technology awareness staggering at times.

When grandmother spoke to R last night, she said,
"Don't forget to speak loudly and clearly."
R replies,
"Oh, it's ok Oma, I'll be using the microphone."

A more peculiar comment came when I overheard someone behind me make reference to me in conversation. I was described as,
"The guy in the red shirt."
Was the speaker worried I would overhear and be offended if he had described me as 'the guy in the wheelchair'? Or did it just not occur to him that my chair is quite a defining feature? I was the only wheelchair user at the event, so it would have been easy to pick me out. It is true that I was the only person in a red shirt in the gallery at the time,so that description worked just as well in context.

I felt puzzled more than anything. I have no problem with being described as the guy an a wheelchair. As long as I'm not described as wheelchair bound. That's an expression that pees me off. I am not bound by my wheelchair, I am freed by it. Without it I am bound by my paralysis. On a gravel path, one wouldn't describe a walker as shoe-bound, nor would a sailor in the middle of an ocean be described as boat-bound.

It's not about being PC, or causing offence. It's about words that suggest tragedy, as if life is as good as over.

Future view?

Fri, 09 Jul 2010 11:26:45 +0000

Augmented (hyper)Reality: Domestic Robocop from Keiichi Matsuda on Vimeo.

Space is the place

Mon, 05 Jul 2010 16:36:45 +0000

One of the big struggles facing many people who suddenly find themselves in a wheelchair is a lack of space in their home. That is assuming they can even access their home. We were fortunate that we were able to adapt our flat to make it wheelchair accessible, with a platform lift at the front to enable me to negotiate the front steps.

Our garden is down a flight of stairs, which makes my use of it into a rare occurrence, but at least I am able to get around indoors. Even so, R has learned to put things away from an early age. I don't want to give the impression that she's tidy, or even obsessive, far from it. But she does know not to leave stuff all over the floor, something which becomes apparent when she has a playdate, and I end up pinned in the corner of a room, laid seige to by the massed ranks of Playmobil and other assorted toys.

There are more fundamental space issues for many people. The sudden requirement of significantly more floor space can make the impact of a new wheelchair into a profound change of lifestyle around the home as well as in the wider world.

I am really impressed with some of the solutions offered in this clip. While the emphasis is on small apartment living, the potential applications for those of us who need extra space to incorporate a wheelchair are numerous.

The opportunity for other house-holders to fold a troublesome relative into the wall would have to be resisted, mind...

Incisive

Sun, 04 Jul 2010 21:37:13 +0000

I beg for ten minutes of your time... Watch this short film for an analysis of the current financial situation, andwhy, if we don't learn from our history, we are indeed destined to repeat it.

Down Stein's way

Wed, 30 Jun 2010 18:05:36 +0000

We have just spent a very pleasant weekend down in Cornwall, visiting friends and family from Australia who are on holiday at the moment.

It was an interesting weekend for me, as I lived in Cornwall for six months about a million years ago. I was surprised to find that parts of my brain are still clogged up with geographical knowledge of an area I have not visited in many years.

This knowledge isn't particularly useful for a couple of reasons.
Firstly, it manifests itself in the form of strong hunches, rather than a SatNav overview. An example: Turning the corner with an overwhelming confidence that there will be a watermill followed by a viaduct. It's rather like having a thousand piece jigsaw puzzle scattered randomly across the carpet of my brain.

Secondly, there have been quite a lot of changes over the last fifteen years, so there is no guarantee that the watermill will still be around the corner. Imagine someone has drawn a different picture in magic marker on half of the jigsaw pieces (why do my analogies always end up so unwieldy?).

We did get to spend a day in Padstow, including a very nice meal in a Bistro owned by the ubiquitous Mr. Rick Stein. The food was really excellent, some of the best fish I have ever had. I had fantastic sardines with a tomato, mint and caper salad, followed by haddock with a sauce verte with butter beans and the tiniest hint of fresh chili, a fantastic combination which leaves me salivating just thinking about it.

That said, I did find something a little unsettling about the way that Padstow is so dominated by the Stein. There's a restaurant, a bistro, a cafe and a fish and chip shop, as well as a deli.

Unfortunately, there is not much in the way of accessible shopping in the harbourfront area, with all the shops having a least two steps, no drop kerbs on the paved areas, and cars trying to negotiate the one way system. Add to the mix large sections of unfenced drops into the harbour and a busy day becomes a wheelchair skills challenge with very high stakes.

Obviously, I relish such adversity, but it's certainly wouldn't be much fun for many people. It's a shame that such an obviously successful town can't put at least some of the revenue into simple access solutions that could be subtle and cerainly not very expensive.

And I know just which bit of the revenue they could use, for on this trip, I came across my favourite wheelchair sign to date...

The sign was accompanied with the explanation that the Harbour Commissioners were 'unable to offer' parking charge exemptions to Blue Badge holders. Unable to offer suggests,

"We'd really love to. Honestly. I was saying to Presuming Ed just last week how much joy it would bring to able to offer such and exemption. But then THE MAN came and hassled us, dude, and it all got really heavy. Fight the power."

I suspect there is a little more of a we're unable to because of all the money we can make by charging blue badge holders.

I would like to make one thing clear... I don't mind paying. Especially if there are alternatives that I have chosen not to use, but when we enquired about the ferry from the other side of the estuary, the harbourmaster in Rock was very unhelpful, and the tidal nature of the river means that at tdifferent times the ferry may or may not involve steps and a soft sandy beach.

But here's the best bit... The afforementioned sign was in the Rock Quarry carpark (also run by the Padstow harbourmaster), which also has no dispensation for blue badge holders. And surely there are more diplomatic ways of getting the point across:

Heart felt

Wed, 23 Jun 2010 10:34:53 +0000

The scene:
I am sitting at the computer, attempting to concentrate on work and trying to filter out the contented mumblings of beloved daughter who is sat on the floor with pens and paper, being creative and that...

R: Daddy, can I borrow the scissors?
Me: Of course. What do you want them for?
R: I want to cut out your heart.

I can feel my mind snap back from the screen and into my immediate surroundings, as a chill runs down the bit of my spine that still works.

Had I heard correctly? Has our daughter become a Goth at 4 years old? Perhaps she is taking the first steps on a career path as a coroner?

I look down. She looks up. Then she raises a piece of paper.

R: Look, Daddy. I've drawn a big heart for you.

Step off.

Mon, 14 Jun 2010 14:18:14 +0000

Spent the weekend catching up with various friends who, now that we all have children, we don't get to see as much as we'd like these days.

By coincidence, this meant visits to two homes that are both liberally sprinkled with generous helpings of stair. This can be particularly baffling at times. Example: Steps up from the street followed by stairs down inside. Or how about internal stairs down followed almost immediately by the same amount of stairs back up again? As architectural embellishments go, the stair is pretty low. A trip hazard can rarely be seen as improving the ambiance of the world's most iconic buildings. A decent cornice? Now that's one thing... crenelations work too. Ok, they're just steps on the roof, but at least Viscount La-di-Da is less likely to be seen tripping over ramparts and falling face first on a tray full of poached eggs and toasted muffins on a Sunday morning.

I admit that there is some aesthetic benefit of stairs in certain situations and I for one would not delight in watching Fred Astaire skipping down a one in twelve ramp with substantial hand-rails and hazard tape denoting the edges. Or twirling his cane and doffing his top hat in a stair-lift, come to think of it. But Hollywood dance extravanganzas are rarely staged in the average London Victorian terraced house.

I am being deliberately disingenuous here, as all the stairs I visited over the weekend have perfectly good reasons for their existence and location, but I have realised that I am out of step (ho ho) with a life punctuated with fancy flights (oh, stop). I grew up in a house full of staircases, unlike P who grew up in a typical Australian house which was all on one level, except for access to the garden. This means that running up and down stairs was an integral my life for many years.

But sitting in the basement of a beautiful Clapham abode (down below down south), the whole idea of having to go upstairs to get 'things' or use the toilet/ go to bed etc. just seemed suddenly unfamiliar to me. It is interesting to observe that, just as some odd things can feel normal if you do them often enough, so normal things can feel odd if you stop doing them.

I am not completely undone by stairs. It just means that I swap one means of transport (my wheelchair) for another, namely a cushion strapped to my backside. Although this particular piece of kit wasn't cheap, it works very well. I would be lying if I were to say that I love heaving my sorry carcass up and down numerous steps. But I'm determined not to be excluded by something once so mundane as a flight of stairs.

Support act.

Tue, 08 Jun 2010 10:59:24 +0000

I'm sure that I can't be the only person who is a little concerned about the choice of characters for the latest Nationwide's England ad campaign.

The well worn gag is that 'Andy', the wheelchair user, demonstrates tremendous physical agility behind the back of his carer 'Lou', who remains convinced that he needs the wheelchair.

The danger with such a prominent campaign is that while the joke is clearly not designed to denigrate or undermine wheelchair users, it can easily become a sort of short-hand for playground humour.

The Little Britain sense of humour is often described as a great example of the British ability to laugh at ourselves. While there may be some truth in this, it should be pointed out that the laughter is mainly directed at a small group of marginalised people.

The same can be said of much of the best comedy that has been produced down the years, and I'm not in favour of censoring the choice of subject matter for humour, except where it is used to justify material designed to incite hatred.

But for the flagship ad campaign of England Football's main sponsor? Surely something a little more sophisticated than laughing at who? The idiot savant in the wheelchair? The skiver who deceives people into thinking he's disabled? Or perhaps the well-meaning but easily duped carer?

This last one could be problematic. Isn't he a part of the voluntary sector that will be taking over the running of schools, hospitals and social services in the Cameron/Clegg vision of 21st century Little (Government) Britain?

Self aware

Mon, 31 May 2010 19:47:32 +0000

So, it was as I predicted. I choked, I froze, I generally went to pieces on the baseline, and the court stubbornly refused to open up and swallow me. In short, I did more to demonstrate the importance of good sports psychology in one weekend than could have been achieved in a year of victories.

But for all of that, I came back from the weekend feeling energised and more enthusiastic about tennis. I remain a passionate believer in the vital role that sport can play in physical well-being for many people, especially after sudden disability. But there's something more and, not for the first time, I find an entry on Andrew Farrow's blog that is both timely and apposite.

For me, tennis provides me with moments of total focus when I am oblivious to all else. It was this sense of my 'mind quietened' that drew me to climbing and working at height (up a tree for example). This coupled with an acute awareness of every movement, and an almost hyper-reality that I felt which no doubt came from overcoming one's instinctive anxiety about being off the ground.

However, tennis involves something altogether less familiar and utterly fascinating. When playing under pressure, the body suddenly decides to do something completely different to what is asked of it. Instead of fluid hitting through the ball, the shoulder decides to get heavily involved and a simple topspin forehand becomes a drive that a pro-golfer would be proud of.

Please forgive me if it sounds like I am covering the same ground as in numerous previous missives. It's just that I think I am beginning to understand what fascinates me about the collapse in my co-ordination...

Over the last five years, I have spent many, many hours becoming extremely aware of my physical manifestation. The loss of function and sensation in one half of my body seems to have intensified my experience of 'how the other half lives'.

Coupled with this increased awareness of sensation has come a need to consciously think about how to look after the rest of me, the part I can't feel. I have had to learn how to assess circumstances or incidents in terms of injury risk without the signals that one instinctively relies upon. In other words, just because it don't hurt, doesn't mean it ain't broke. And fixing it is often more complicated, too.

I have learned how to balance myself and my wheelchair when even the tiniest movement can be enough to throw me off balance. There is a tendency among some in the SCI community to view people who still have functioning abdominal muscles as being able to balance and function like any able-bodied person sitting down. While it is true to say that I can sit upright in a chair without leaning on a backrest, it takes very little to unbalance me. If I reach out with one arm, for example, I have to work extremely hard to avoid losing balance, and I certainly couldn't pick up anything of even modest weight without holding on to something with the other hand for stability.

But all of this has become (almost) second nature, yet another example of our astonishing ability as a species to adapt and overcome profound adversity.

I still can't hit a tennis ball if anyone is watching, mind.