Looking Up

Excuse?

Wed, 11 Jan 2012 20:49:52 +0000

In my experience, the overwhelming majority of people are considerate in their encounters with me. If there is ever an issue, it's usually due to haste or just not looking, most notably when people let the door go in my face.

If I'm left feeling uncomfortable, it's usually due to an exaggerated gesture, like clearing a space big enough for me to drive a car through, or warning everyone within fifty yards that I'm coming. This is particularly true of staff in music venues. I know it's partly down to deafness caused by years of loud gigs, or a general weariness caused by years of dealing with drunken idiots. Either way, it is charming to make your way through a crowd with a chaperone with shoulders like a rhino, shouting,
"WHEELCHAIR COMING THROUGH! MIND YOUR BACKS!".

But lately, I have encountered one section of society who don't always offer me such courtesy. I recently had a set of doors persistently obstructed while my presence was met with ambivalence. On another occasion, I was at performance when someone stood right in front of me. When I pointed out that I couldn't stand, I was told, "Well you should have got here in plenty of time then."

Rest assured, I made it absolutely clear that I had arrived in plenty of time,using th strongest language appropriate to the situation The gentleman in question tempered his behaviour after that, but on both occasions, it was people from the same demographic who were behaving in such a selfish and inconsiderate manner.

I don't like to make generalisations for fear of courting prejudice, but I feel I can remain silent no longer. So I'm just going to say it. Parents. There.

Yes, I know the arguments, they have different cultural values (usually those of a toddler), but I'm still a little disappointed. Especially because on both occasions I was there because I am 'one of them' too.

The door being obstructed was at the swimming pool as I tried to get Rosalie through it so that she could attend her class. The obstructors were all jockeying for position so that they could gawp through the windows at their offspring slapping the water to a foam and hitting each other with the floats.

The second incident happened first, but was certainly the most shocking. The event I was attending was Rosalie's school Christmas assembly, complete with massed ranks of recorder players and a sort of nativity theme.

Again, I'm inclined to think that it's their love and enthusiasm that makes them behave so badly when they are focused on their offspring.It's not a great example to be offering to the next generation, for sure. But what makes it all the more strange is that we're all just trying to see our kids too. And obviously, mine are much more important than all the others...

A shift in perspective.

Wed, 04 Jan 2012 16:31:07 +0000

Just before Christmas I spoke at a charity fundraiser for Murray's Muscles, an organisation that does much to help those affected by muscular dystrophy. It was a challenge to think of what to say: My story has little in common with the experiences of those affected by muscular dystrophy. I have experience of navigating the world as a wheelchair user, but I do not have a degenerative condition, and many of my attitudes to life were shaped over thirty-six years as a biped.

But I am also a father, and so I tried to focus on what we can all do to improve the life experiences of children with disabilities. Here's an excerpt from the speech that I delivered.

"Much of the frustration that I felt during my rehabilitation came from having to learn life skills all over again, especially as I was doing this without the energy and wide-eyed enthusiasm of youth. It's easy to forget the excitement and enthusiasm that accompanied those first forays into independence.

Yes, we may remember moving away from home for the first time, but go back further. Can you remember the first time you made your own breakfast? This example is on my mind, as the father of a six-year old daughter. I have often reflected on these formative experiences while mopping up puddles of milk and picking cornflakes out of the toaster.

As a parent I can see how many of my daughter's games and activities are concerned with playing at being a grown-up and an enthusiasm for doing things on her own. But while I can appreciate the joy in this when I watch her, I felt very differently when I was trying to discover my independence the second time around.

It was certainly harder as my struggles with daily activities were soundtracked by a voice in my head just kept saying, "What's the fuss. You can do this." It took me some time to re-calibrate my expectations, to let go of habits learned in a former life, but once I reconciled myself to the reality of my changed circumstances, I learned the value in plotting these tiny victories as steps along the way to claiming my life.

I can remember the first time I got my own breakfast in the spinal unit. I can also remember the first time post-injury that I went to the toilet on my own, had a shower, made a cup of tea or cooked a meal. It's easy to forget that these relatively mundane activities help to give us a sense of independence. As adults we take these things for granted until they are denied us.

To this day, I view such modest activities with a new perspective. This can be frustrating for those close to me, who have to watch me struggling with something that they could do with ease, but it's important that I do things for myself. This is who I am.

I have also come to realise that the accumulated affect of these modest achievements has been to build a new confidence, which has led to a new creative drive and in turn a new career. I began by writing about my own experiences. But I also had some questions to ask. How has my life changed? Are all the changes necessary? Should I be changing my expectations of what life has to offer, just because I'm in a wheelchair? Over time, I have developed and approach to everything that can best be summed up as,
"Find a way to do it, then decide if it's worth the effort."

My bloody mindedness has also led to me becoming a wheelchair skills instructor for a spinal injuries charity. And when I work with children with disabilities, I can see how empowering it can be when we are able to offer them opportunities to establish some independence, however modest it may seem. It may be helping to establish the confidence to self-propel, or negotiating a kerb or steep ramp.

Not everyone has the same goals, expectations or abilities. But it's not a competition. It is important that every individual is given the opportunity to grow, to find their own boundaries, to make the most of what their life can offer."

Ain't got no body.

Wed, 14 Dec 2011 14:23:28 +0000

Now, you could be forgiven for thinking that this posting is just an excuse to stick up some pics of my tattoos, now they are finished. In a way you're right, but there is a point to this, I promise.

When the 'to ink or not to ink' discussion comes up, there is often an anti-tattoo argument that goes along the lines of, "Yes, but think what they'll look like when you're old and sagging..."

I've never fully understood the point that this line is supposed to make, because by then you'll be... well, old and sagging. I can see the sense in making the choice of any permanent body marking with care. Having a lover's name, or a portrait of your favourite pet is a risky strategy. They may dump you for another who offers better cat-food, or you might split up with said lover.

Equally risky is the 'under the hairline' option. Yes, you can grow your hair long to cover up the artwork, but the prospect of going bald is stressful enough without worrying that low tide will uncover the moniker of some obscure thrash metal band named after a venereal disease.

Our image obsessed culture puts everyone under pressure to conform/perform, and leaves the majority of people feeling out of step with unrealistic expectations. With the veneration of youth, everyone gradually falls further and further behind anyway. There are times when I struggle to understand how we reached a point where people desperately throw money at their no longer compliant bodies and go under the knife, or stain themselves with orange dye to give the appearance of imminent skin-cancer.

What makes it all the more absurd is that we have arrived at a point where looking like you have had plastic surgery is considered preferable to aging. People who would rather paralyse their faces until they resemble death masks, than look like they have been alive for a while.

But when it comes to matters of body image, it is safe to say that spinal cord injury pretty much blows many such trivial concerns out of the water. With legs like a pair of over-sized pipe-cleaners, and a constant 'sitting down' profile around my middle, I am hardly feeling vain these days. Clothes don't hang right, my cuffs are always covered in 'something from my wheels', my hands have calluses big enough to file my nails on. Sure, I have bigger arms and shoulders than before, but I also have thighs like balloons full of treacle.

But I'm OK with all that. Coming to terms with never walking or running again makes one's appearance seem trivial at first. Then, during rehabilitation, one learns how to compromise and the importance of making the best of what's left. I still care about how I look, but over time I am getting more comfortable with living in my own skin. I've just embellished it a little.

P.S. Should you be wondering, the picture tells my story: it is a play on the traditional rhyme recited when magpies are sighted: One for sorrow (the bird closest to my broken spine). Two for joy (an Australian magpie, Gymnorhina tibicen, for my Australian wife Penny. Three for a girl, for my daughter Rosalie. Four for a boy, for my son Felix.
As the next two would be five for silver and six for gold, me being nowhere near a place in the British Paralympic team means that I am unlikely to go any further with the whole ridiculous idea.

Exploring.

Sun, 27 Nov 2011 14:40:21 +0000

I finally had another bite of the yoga tree (!?!!), when I went to see Fredee, an instructor who was one of the other participants on the yoga session I went to for The Guardian back in September.

The experience second time around was inevitably different. This was partly because we were in her house rather than a swanky yoga studio, but it was also because I had more of an idea of what I could expect. While the session was less dramatic as a consequence, it allowed me to explore my 'internal space' more fully.

The poses and stretches were tough; difficult to achieve and exhausting. This left me with the sense that there is certainly much to explore and a lot of work to be done before I can formulate any definitive view on what yoga can do for me.

But I did find myself already able to view my relationship with the paralysed half of me in a different way, and this in turn changed my notion of what yoga could offer to people with spinal cord injury.

My first experience had left me with a certainty that yoga should be taken into rehabilitation centres as soon as possible. I have since changed my view on this. After that first session, I found myself unable to sleep for three nights. What kept me awake was a buzzing, tingling 'sensation' in my legs. It was this feeling that contributed to a major sleep problem when I was in hospital in the weeks and months after my accident.

The best way I can explain it is to imagine that my brain, after 35 years of feedback suddenly loses contact with my legs. Silence prevails for a while, but soon my brain starts looking for news. In the same way that inactivity will give us pins and needles or even cramp, the brain sends a danger signal to impel the body to move, in order to maintain circulation. Not surprisingly, this has no effect as I can't recreate the sensation of moving my legs. Instead I feel pain and discomfort build up, eventually causing me to move my legs with my arms, or even just slap my knees, etc.

During the day this is uncomfortable but there are usually enough distractions to keep my attention, or at least get me over the worst spikes of discomfort. However, when I am trying to sleep, this 'buzz' of white noise from my legs makes in very difficult to switch off.

Over time, my brain has developed some kind of method of filtering out this noise to enable me to sleep. This isn't always enough however, and sometimes a take a sleeper to help knock the corners off.

What I have rarely done is to explore the white noise coming back from the far reaches of my body. Yoga made me begin to do this, but it has also made me realise that it would have been unwise to try and face the 'silence' in my body during those first few months or even years. This is because such internal exploration brings me face to face with my spinal cord injury, without any rationalisation distractions to soften the reality of paralysis.

It has taken me a long time to feel able to explore this part of me, but in doing so I hope to change the relationship between my head and body and maybe hurt a little less in the process.

Well bread

Fri, 04 Nov 2011 16:29:43 +0000

Cooking has always been a bit of a passion of mine, one that started very young. I have very early memories of cooking with my mother, and I also remember realising that dinner with friends was an important and enjoyable part of grown-up life.

In my family there has been a lot of moving from country to country. My mother is Austrian, my paternal grandmother was Dutch, my great Uncle was Spanish, and I have cousins from Pakistan who settled in the US, Cyprus and Canada. This familial diaspora may be a factor in the importance of food. Food connects us to people and to a sense of place. It is what people reach for when they want to remind themselves of 'the Old Country' wherever that may be. Taste is closely connected smell (a subject that I commented on recently), so it is perhaps unsurprising that it carries such an emotional attachment.

It meant a lot to be able to get back to cooking after my accident. One of my assessments of independence when I was up at Stoke Mandeville involved cooking a meal in the Occupational Therapy kitchen (I did seabass stuffed with herbs and lemon with mashed potato and purple sprouting broccoli as I remember). Every time I realised something from my 'old life' was still possible, I was filled with a surge of excitement.

In the same way, everything I realised I would not to do again drove me into a pit of depression, but most of those realisations came in the first couple of weeks post-injury, and it turned out there were more ways of doing things than I had thought.

So cooking for me is reconnecting with my history, and that of my family. But there's more to it than that. It's a bit sad, but I think I get a bit of a 'provider's lift' by making dinner for the family every night, instead of wrestling Elk or whatever I'm supposed to be doing. These days, I am happy to acknowledge that I am easily pleased by anything that makes me feel 'whole' and useful, even if it is a misguided confidence that I could do something, rather that actually having to do it.

One of my recent discoveries has been breadmaking. This is not breadmaker breadmaking, although we do have one of those which has put in many years of good service. But I am talking sourdough; hand-kneaded, home-grown-leaven, proved-in-a-basket sourdough.

I think part of the pleasure is quite a primal one. Bread must surely be the first refined food that we produced as a species. Pounding grains, and making a sticky dough cooked in a fire. It would have been pretty rough, and I like to think that my efforts are a bit more sophisticated, or at least contain fewer ashes and squashed grasshoppers (note to self, new loaf idea: ash and grasshopper surprise).

But having a jar of gloop that needs feeding every day is very satisfying. Taking a blob of leaven and adding flour water and salt to produce a loaf makes me feel, well, useful. And if it helps to give my children an early, warm memory of the pleasure of cooking, then so much the better.

Gervais and the m-word

Wed, 19 Oct 2011 14:58:49 +0000

For anyone who hasn't been following the story, here's an outline:

Undeniably talented comedian Ricky Gervais has been using Twitter to post pictures of himself pulling faces and describing them as 'Mong'. A few people observed that this could be construed as offensive towards people with Down's syndrome.

For the record, I am not offended, but I am annoyed. While Ricky Gervais claims that the word no longer has the same meaning, it is clear that it does, otherwise there wouldn't be such a debate. Gervais has done much in his career to challenge perceptions of disability, from the Office through to his Government funded advertising about employing people with disabilities.

But while he may feel that there is some subtle nuance in the use of the word Mong, it is clear that many of his followers on Twitter do not grasp it. Instead of letting the issue die a natural death, Gervais has 'unleashed' his followers on anyone who disagrees with him. Some of the recipients of some of the quite nasty comments are people who have personal experience of Down's and of associated bullying.

I do believe in free speech. I do believe that comedy should be controversial and may even be offensive. But with the right to offend should come some responsibility, especially if you are someone as popular as Ricky Gervais. I imagine that many of his supporters would balk at the prospect of defending Jim Davidson's routines from the 1970's. It is perhaps unsurprising that Gervais is on record as saying that he would be uncomfortable with using the word nigger on stage. Why is this different?

To use the argument that anyone who disagrees is just jealous of his success is pathetic.
It is equally pathetic to claim that anyone who expresses a different opinion to Gervais is doing so only for reasons of self-promotion. It is insulting to accuse the mother of a disabled child of using their child's disability for self-promotion, just because they joined the debate.

To attack anyone who disagrees with his interpretation of the word Mong as being in favour of censorship is to completely miss the point. Surely that accusation is better aimed at anyone who shouts down dissenters.

If you ask me, I think it's time Ricky Gervais grew up and recognised the influence he holds. How he chooses to use that influence can have a profound impact on some of the most marginalised people in society.

He is not in the playground anymore. Words have consequences.

When four makes two

Fri, 07 Oct 2011 17:17:32 +0000

With Penny and Felix in Australia so that the little man can meet the other half of his family, I am still adjusting after a week of school run routine. Who knew there was so much time in the day before nine o'clock?

All these miles (slight exaggeration) clocked up to and from the school gate with a scooter balanced on my lap have made me think. If I got a huge elastic band, the scooter could return home without me having to carry it. Except then I'd need two scooters and two elastic bands.... No, not that. I find myself reflecting on how lucky I am to be in a situation that allows me to re-organise my day (by which I mean do less work) in order to give my time to single-parenting for a couple of weeks.

This is partly because I am a freelance writer/journalist and can therefore make reasonable use of the time between 9 and 3.30 without extra child care. But it is also because I am able to look after myself enough to be able to look after a small human being too. Not everyone with a spinal cord injury is that fortunate. Partly this comes down to the level of injury, but it is also due to the level of support that I have received and still do receive from family and friends. By creating a sense of security, they have enabled me to try (and occasionally fail at) things in order to make the most of what is left to me.

My determination/bloody-mindedness may have contributed to this, but without feeling fully supported, I would not be able to push hard against the things that make my life difficult. If my mobility and confidence were still at the levels reached after I had been out of hospital for a couple of years, I would have been extremely apprehensive about coping for two weeks. Instead I was only mildly apprehensive.

There have been other people who have made the first week relatively easy. Other parents from Rosalie's school have invited her on playdates with their kids and offered to pick her up on the way to school in the morning. All of this has been welcome, if only to keep her distracted from the absence of her of our family unit.

But perhaps more than anyone else, the person who has made the week stress free and fun has been Rosalie herself. Although only six, she understands so much about what I can and can't do, and is patient and cheerful most of the time. I could do well to learn from her example.

Finally, could I point you in the direction of the BT Storytellers for my article on a strange game of tennis, and observations on the subject of teamwork.

That is all.

Connected by yoga

Mon, 26 Sep 2011 22:43:03 +0000

Hi, all. I haven't written on this subject yet, because I was waiting for my piece for the Guardian to run. It is in tomorrow's paper, so do have a read. It is a subject to which I am convinced I will return.

Unfortunately, my bladder challenges are continuing, so I am a tad delirious at present, hence I will leave my 'professional voice' to tell the story..

Scents of place.

Fri, 16 Sep 2011 14:47:14 +0000

It is often observed that our sense of smell somehow taps into memories more intensely than any other (there have been some grisly examples of this: It was said that serial killer Dennis Nilsen was caught after a drainage engineer recognised the smell of decaying human flesh from his time as a fire-fighter during the blitz).

Thankfully, most of our olfactory 'memories' will be of something pleasant such as the smell of a mother's perfume when she was going out, or a favourite dish that a much loved grandparent would prepare.

In my case, the smell-memory connection is something of a mixed bag. Over the last 6 years, I have become acutely aware of how many toiletries use similar ingredients. Many showers have been punctuated by a flashback to my time in the acute ward of Stoke Mandeville Hospital.

Washing, shaving and masking the smells of the ward felt really important during my rehabilitation. Maintaining some control over my appearance and aroma was a vital way of keeping in contact with my 'old' life and sense of self-respect. These little details can become very important to patients and should never be trivialised.

But the substances that enabled me to keep 'institutionalisation' at bay ended up paying a high price, as they became inextricably linked to this, most desperate period of my life. When I was discharged I had to bid a sad farewell to the aftershave that had nobly stood by me and kept me resolutely connected to days when I was at my poncy, primping best.

There is a theory that the strength of our response to smell is because we process smell and taste in a different way. What we see and here is received by our ears and eyes in the form of waves that our brain decodes (with varying degrees of success).

When we smell something there is a different interaction taking place. A molecule of 'stuff' comes into contact with the olfactory cells in the nose making a direct connection with the substance, which is then identified. It is because we have this physical contact with what we smell that the olfactory cells reproduce very quickly. If we smell smoke, there is a good chance that the olfactory cells will be burned and destroyed in the process, so rapid regeneration is essential.

This characteristic has made the research into olfactory cells an exciting part of the search for the treatment of spinal cord injury. If cells these from the patient's own body could be used for regenerative purposes, there would be virtually no risk of the material being rejected.

Should such treatment prove successful, it is still likely to be a long time before people with injuries as profound (and old) as mine are fixed.

Still, it's something to think about as I add yet another brand of shower gel to the banned list...

Déjà Views

Wed, 07 Sep 2011 15:32:43 +0000

This is a subject I have surely covered in the past, but my goat has been got again, and this time I've been snap happy, recording things for posterity. The well worn topic for today's blog entry is the disabled toilet. Or rather, the disabled toilet as store-room.

OK, the first example comes from The Old Dairy pub in north London:

Lovely attention to detail here. Not just an obstruction, but and artistically constructed and very unstable obstruction. But then, where else would you put your bar stools. What's that? By the bar? Surely not.

The next example can be found in the disabled bathroom/changing area at Highbury Swimming Baths:

As a father, I have had cause to be grateful for a change table in the disabled toilet. Except when it is right by the door, making access to the room virtually impossible. When I pointed out that having all this stuff by the door made the room virtually impossible to use, the staff member I spoke to said, "Well, lots of people use the shower chair. If you need it moved, you can always come and find a member of staff to move it for you."

I can see how that would be reasonable. Except that I've just rummaged around to find my RADAR key, and I'm trying to use the toilet before the rest of the family come out of the changing rooms, children damp and ready to go home. I don't want to have to go and find a member of staff (not always easy in leisure venues in my experience) just so that they can re-arrange to furniture. Especially as the room in question is big enough to store that stuff at the far end.

I'm sure if I asked at the pub they would have moved the bar stools (as they did the table, chairs and sofa blocking the ramp by the front door).

But I don't really feel like having to trawl around a venue trying to find a member of staff before I can use the toilet. If the pub is busy and noisy, with lots of people standing up, just getting to the toilet can be a real hassle, and sometimes I just don't have the energy for feeling 'different'. I just want to take a leak. I don't want to be placing my nose on the bar and hoping my hair is tall enough to be spotted by the bar staff.

In some ways, I'd rather a venue have no disabled facilities, rather than fill the disabled toilet with the entire contents of an Ikea catalogue. What that says to me is,
"We've put in a disabled toilet to conform with our requirements, but storage space is more important to us than whether or not any disabled patrons can use the toilet."

By contrast, I've been to venues where the facilities are far from ideal-ramps too steep, doorways a bit narrow, but they've made an effort. They make sure staff are switched on and helpful. At Nikole Lowe's Good Times Tattoo studio, there is a massive staircase to be negotiated. I was still made welcome, with three members of staff carrying me up and down the stairs in my chair. Once up there, the bathroom is accessible, and the whole studio is on one level.

All of which proves that when it comes to access, attitude is everything.

Wonderland

Thu, 01 Sep 2011 19:49:42 +0000

My six year old daughter Rosalie squealed in delight as she leapt from her seat and ran after the white rabbit. Alice sighed and put the 'drink me' potion back in her basket, content to finish her story another time. I looked up from our tea party, and stared at the Olympic Stadium. For Rosalie and her friends, would the Games feel any less of a fantasy than this afternoon's entertainment?

Before you conclude that I have lost more than a few marbles, dear reader, I should explain. The Mad Hatter's tea party was not a figment of my imagination, but a tribute to that of Lewis Carroll. The long tables, activities and willing actors were provided by the Discover Centre in Stratford, a wonderful place of stories and games that fire the imaginations of all children who visit.

The venue was The Greenway, outside the View Tube café. For anyone unfamiliar with this location, perhaps an explanation is in order...

The Greenway is the unlikely name given to a footpath and cycleway, which stretches from Bow in east London out to Beckton. This pleasant path is actually laid upon an embankment containing London's northern outfall sewer.

The View Tube is a social enterprise comprised of a café and a community venue. It was built using recycled shipping containers, and commands a fantastic view of the Olympic Park. It is a popular tourist attraction, with regular tour groups making their way along the Greenway to enjoy the view and read the information boards provided by the Olympic Delivery Authority.

This corner of east London has already seen profound change at a rate that some people see as unsustainable. Where successful urban regeneration usually evolves over time as local needs are identified and issues resolved, the Olympic circus lands on a city and then moves on, leaving any number of sites and facilities. The challenge of incorporating these into a successful legacy is a tough one. There are some notable successes, the most obvious being Barcelona, but even in such instances the transition has taken a number of years.

One of the best ways to encourage the successful integration of the site into east London life must be to engage with the local community. With the demand for tickets and the questionable 'lottery' system for allocation, there has been no ring-fencing of tickets for local people. It is a shame that this idea was not adopted, as it would have strengthened a sense of ownership of the Games among the local community. This means that fringe sites and events will be crucial in making people feel fully involved in the changes taking place in their neighbourhood.

Events like the Mad Hatter's Tea Party are a good start. I hope there are many more creative activities over the next twelve months. It's certainly feeding Rosalie's imagination. When we discussed the stadium afterwards, she asked what the grass in the middle was used for. I explained that it was for things like throwing the discus and shot put. She looked at me with a confused expression.

"Really? They throw biscuits and chocolate?"

Perceptions

Tue, 30 Aug 2011 22:27:53 +0000

When telling a story of adversity, of heartbreak, suffering and triumph of the human spirit, of heroism, many people will reach for a cliché or two. There is also a tendency to simplify details in order to find the 'human interest.'

This can be frustrating, particularly for anyone with personal experience of the adversity/tragedy that besets the subject of such inspirational tales. When it comes to spinal cord injury, as well as emotional turmoil, most people affected find themselves plunged into a bewildering world of 'levels,' symptoms, mobility issues and long term conditions.

Despite the massive potential for different symptoms and outcomes (some people even manage to break their back but not damage their spinal cord), the simplified version of events prevails in most media coverage. All too often, the story told is one where our hero is told he will never walk again, only to defy the medics and achieve the impossible.

Don't get me wrong, I am pleased for anyone who defies the odds and makes any kind of unexpected recovery. But it's frustrating when the story suggests that it's not the complex nature of spinal cord injury that leads to such a wide range of outcomes. No. It's all about the guts of our hero. If you are bloody-minded and determined enough, it's possible to beat the prognosis.

It's a heart-warming tale. Inspirational. But what of those who don't defy the odds? My paraplegia was instant and (so far) permanent. Is this because I'm not determined enough? should I have ignored the medical professionals? Was I too quick to accept my fate?

Of course not. I am diagnosed as T12 ASIA A. This means that I have no movement or sensation anywhere below the nerve bundles that leave my spinal cord from my twelfth thoracic vertebra. My spinal cord is 95% severed, my T12 vertebra still out of position and fused with my L1.

If I put calipers on, I can get up on two feet. But it's hard work and very few people of my level ever master functional walking this way. An incomplete injury (some function below my level of injury), or a level or two lower, and I might have found it possible to get up on two on a regular basis.

But all of this takes some explaining. It's not a single line story. And no amount of 'Rocky'-style training montage would have got me running up a flight of stairs again. Would it?

Incapacity

Wed, 10 Aug 2011 11:37:00 +0000

My observations about Incapacity Benefit are now on The Guardian's website.

The discussion around benefits is often a heated one. The lines seem to be drawn between those who believe that the system is being exploited by most claimants and those who feel that they have been marginalaised by society because of their circumstances.

In my opinion, neither the old nor the new system is fit for purpose.

There can be little doubt that Incapacity Benefit was used in the past to massage jobless figures. It is surely no coincidence that the level of Incapacity among men of working age increased in areas like the North East of England at a time when many industries were in terminal decline.

But there are also many people who have a genuine case, but who would be deemed fit for work by the new system. There is also a wider issue. Many employers are reluctant to employ people with disabilities, particularly those with chronic conditions or who have a history of mental health issues.

Society needs to be able to provide meaningful and adequately supported opportunities for people with disabilities, we need a safety net that recognises health issues and the difficulties involved in finding alternative income. Until then, the existing system remains the only way of preventing many people from slipping into homelessness and despair.

Swept up.

Mon, 04 Jul 2011 19:44:43 +0000

Sometimes, it's the small things that make a big difference.

On the way to the school gate, parents walking in the other direction will see me coming and insist on clearing a broad path for me. This is considerate, but can leave me feeling a little uncomfortable, especially when the pavement is usually wide enough to accommodate everyone. Often, small children will be barked at or yanked out of the way, and I fear some kind of Pavlovian response may gradually develop. I fully expect to be shoved into bushes by vengeful teenagers in the fullness of time. Perhaps it is this parental conditioning that leads to people parking in disabled bays as adults.

But for the most part, people are considerate is a reasonable way, especially as they get more used to seeing me regularly. In this, there is much to be said a the sense of community, which is certainly helped by being a parent of school age children.

It doesn't stop there, of course. Our regular postman knows to wait a bit longer for me to get to the door (especially as he insists on calling as soon as my boney arse hits the shower seat).

People are largely considerate and thoughtful in my experience, but I'm sure that I see this side more frequently, since becoming a wheelchair user. There are occasions when it grates, and I want people to treat me as invisible, or display 'normal' rudeness, but this is rare, and usually because I'm in a bad mood and want someone to scowl at.

It's certainly more of a positive than negative experience, being the recipient of consideration. I even enjoy a feeling of confidence around groups of posturing teenagers, as I now seem to have dropped out of their target audience. Instead, they will offer to help me with stuff, although I suspect that the majority of them are also decent, considerate human beings. In the words of Guy Garvey, "We should help our young people, not fear them."

But of all the small acts of kindness, there is a regular one that never fails to lift my spirits.

It all started in late Autumn, when the leaves were bustling up and down the road on an icy wind (we have two large trees at the front of our house, and the path spends much of the year clogged with leaves, twigs, seeds and bark). I was unloading some shopping from the car and making my way to the front door, just as the street sweeper was making his way along the pavement. I had seen him a few times, making his way around the neighbourhood. I'm always pleased to see a familiar face in local jobs like this, as it suggests continuity and stability in the delivering of services by the local authority. It is also reassuring to think that there are people around during the day who would notice if someone was perhaps trying to get into a house which was not theirs, for example.

On this occasion, when he saw me, he stopped and asked, "I sweep your path?"
I smiled, and said, "It's ok. It will only get covered in leaves again."
But he was already weighing in , enthusiastically, broom in hand. "Is no trouble."

I thanked him, and went into the house thinking how considerate he was. I may be able to manage a leaf strewn path fine in my wheelchair, but it is fair to say that sweeping it is a real hassle for me, and Penny was pregnant at the time.

It didn't stop there. Since then, he has regularly swept our path. Often, I come home to find it has been done while I've been out. I always say hello to him if we meet in the street, although our conversation never goes much further than a few words about the weather (I think his command of English is limited). Today, I saw him sweeping the path once again, and Penny took him out a cold drink and some fruit.

And that's it. The full extent of our contact. And yet, his considerate gesture reaches much further than our path. It reinforces my conviction that the vast majority of people are decent and thoughtful. It's just that some are a little more considerate than others.

Knackered....

Wed, 29 Jun 2011 15:35:27 +0000

I'm loathed to put up yet another 'incident in the disabled space outside my house' posting, but yesterday's encountered made me aware of how relatively fragile my sense of equilibrium is at the moment.

Yesterday, London was subjected to a series of sharp thunderstorms. As any wheelchair user will tell you, rain is a pain in the arse. It is virtually impossible to avoid getting wet, and I have tried to develop a mindset whereby I resign myself to it, and just get on with life. This is made easier by the warm weather, it must be said.

I went to the supermarket, where I performed my usual balancing act, which involves me filling a basket on my lap until I use my chin to keep the last items on the pile to the checkout. From there, the shopping goes into 2 large bags-one on my feet and the other on my lap-and out to the car.

I arrived home to find a car in the disabled space outside the house, blue badge in sight. This meant that I had to park across the road, and as there are no drop kerbs outside the house, I couldn't take the shopping from the car, across the road and up the kerb on my own. Luckily, Penny was in and she came out to help me.

A few minutes later, the car owner returned to his vehicle, and I went out to talk to him. I told him that I had been forced to park across the road and get assistance to bring the shopping in.
His first response was to say,
"I know how you feel, mate. I'm knackered myself."
huh?
I replied, "Knackered, you may be. But I'm paralysed from the waist down. Want to swap?"
That is to say, I would have said this, had it not been for the fact that I only thought of this pithy response once I was back in the house.
He then went on to say that he had only just noticed the sign when he got back to the car (he seems to have missed the word disabled in white letters on the road), which makes the 'knackered' comment even more inexplicable.

Anyway. It is not the parking infringement that I wanted to talk about, except that it illustrated just how fragile my sense of independence is. I am able to look after myself, care for my children, run the house, even work as a freelance journalist. But all of this requires me to live right at the edge of my abilities, and even the smallest hardship can make it all seem so tenuous.

I know that I'm lucky: I'm relatively fit, I'm also quite strong, I have my core muscles that make balance easier, and I have a loving and supportive family and great friends. But it's the psychological effort involved in maintaining a positive outlook, especially when dealing with constant pain. What for most would be a mild inconvenience can be enough to unsettle me for the rest of the day.