Looking Up

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.

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...

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.

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?

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.

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?"

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.

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

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...

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.