Looking Up

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...

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."

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.

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.

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.

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.

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.

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..

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...





 

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: