Results tagged “disabled dad” from Looking Up

It's that time again

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Somehow the 1st of April came and went, without me taking to Looking Up and reflecting upon this date, the anniversary of my accident. This can probably be viewed as a good thing.

The reason I haven't commented on reaching 9 years post-injury is because I have been insanely busy writing on a very diverse range of subjects, all of which will become clear in the fullness of time. It's good to be busy, although it does mean that I have spent less time with the kids, and been somewhat preoccupied. Even my conversations with Penny have been largely filled with me waffling about work.

All for this is very mundane and makes me far from unusual as a man in his forties with a couple of kids, eking out a living as a freelancer. With the exception of my daily battle with chronic pain, I'd say it's all pretty normal.

Nine years ago, however, the idea of my life being normal ever again was inconceivable. My day to day was dominated by trying to master the simple everyday activities that most of us take for granted, and that would enable me to 'look after myself' again. I felt that I would eventually master this, but I couldn't really imagine a time when such things didn't dominate my life.

Now? Well I sleep badly, I spend too long in the bathroom, and I take slightly more medication than I would like to. Forty-something man, etc...

The way that I interact with the rest of the world has certainly changed. Living in a small town in Australia also means that I have lost my anonymity. With my appalling memory for names, and the Australian habit of using names immediately and often ("Tim? Hello, Tim. Well, Tim, this is your bank card." etc.) I spend the first few minutes of every conversation thinking,
"I know you. How do I know you? Are you a neighbour? Or is it a school thing? It could be a school thing. Do I know you? Maybe I don't know you. Have you just been told my name by someone else?"

As with any small town (and this is a pretty friendly one) every trip out to the shops inevitably involves several conversations. I have also had the inevitable curiosity voiced.
"How long have you been in a wheelchair, if you don't mind me asking?"
"What happened to you, if you don't mind me asking?"
Always tough ones, those. If I do mind, well it's too bloody late now.
And If I had been in a wheelchair all my life, how awkward would these questions become? What if there was no accident, no moment people could 'imagine for themselves' to help them understand?

I must confess to a little cruelty. A couple of weeks ago, I was in the bottle shop (off licence).
A 'bloke' came in as I was waiting to pay, and after a relatively short silence and his offering an "Alroight, mate," he asked me,
 "What happened to you, if you don't mind me asking?"
"Oh," says I, "I was just an idiot."
He looks uncomfortable.
"Yeah," I said, pointing to the sticking plaster bound around my thumb, "I was trying to open a shrink-wrapped pack of batteries with a craft knife and my hand slipped."
He smiled, nervously.
I paid and left.

Breaking the code...

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I don't consider myself to be an overly sentimental person, although some who know me better than I do might disagree, and if I'm honest, they'd be right to.

So, let's start again:

One of my illogical emotional attachments causes me to cling, limpet-like, to Arsenal and their particular interpretation of 'the beautiful game. I am, of course, talking football. Or I was, for it seems that these days, I am not just talking about Football (the capital f is to indicate that I am talking about the sport that the rest of the world calls football), but also football (rugby league) and football (Australian Rules Football, also known as 'footy').

Conversations around sport over here seem to be needlessly confusing. Yes, there is the argument that if the rest of the population call rugby league 'football' then it is me who is wrong, for language is merely an agreed set of names used to describe objects, activities and emotions.

Maybe I am too closely wedded to logic, but Football is obviously 'foot' and 'ball' coming together, as they do throughout most of the game. Yes, they occasionally apply a boot to the ball in rugby league, but the puck often hits a skate in ice-hockey, and they don't call that footpuck (nor is boxing called 'facepunch', come to that).

Moral high-ground suitably occupied, that might have been job done. But then there's 'footy'.  Australian Rules confuses things, because they do kick the ball (they also do a weird 'hand-kick' thing called handballing, but we'll gloss over that). It's also a bit bonkers, and certainly makes for an exciting spectator sport, so it's possible I may end up attending the odd game in a bid to get a fix of live sport (there is Australian 'A-League' soccer, but I've tried on TV and the standard falls short of the Premier League, making the games frustrating to watch).

In an effort to acclimatise to life in Australia, and in order to reduce the risk that I might blight my children for life, I decided to purchase one of those strange shaped balls. So, meet the Sherrin footy; an oval shaped ball that resembles a rugby ball with slightly rounded ends. For matchplay, the ball is usually red, or yellow for floodlit games, and larger than the kids' ball I bought to fast-track Felix on the road to sporting excellence.

 We started modestly; catching and punching the ball, as my kicking skills are rather weak these days, and Felix isn't ready to start kicking the ball out of his hands. Things were progressing well until the identity of the ball came into question. Instead of a piece of sporting equipment, it was now 'a hedgehog', and a tired hedgehog at that.

 The hedgehog was put to bed on the swing...

but apparently he struggled with getting to sleep so I was called upon to rock him gently backwards and forwards...

Once asleep, the hedgehog was transferred carefully to the ground, where Felix joined him for a rest.

The whole episode confirmed my worst suspicions; change the shape of a football and the whole of sporting civilisation quickly unravels. However, I refuse to be defeated, and I am intending to found the world's first Sleepy Hedgehog League. And you can call it whatever you bloody well like...

The perils of fatherhood

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it's been a rough week, cinematically speaking.

First we watched the engrossing and unsettling 'Beasts Of The Southern Wild', and then last night I found myself in front of 'The Road'. The latter being one of the most disturbing movies I have seen in quite some time.

For those of you who haven't seem them, both films share a similar theme; a father struggling to protect their child from forces beyond their control. While bleak, the message is the same, that while the father dies, he has managed to bring his child to enough of an understanding that they are equipped to begin life without him.

Heavy stuff, and while 'Beasts' paints a picture with shocking relevance to the economic disparities that exist in the US, one hopes that the scenario in The Road is metaphorical rather than portentous. But for me, both films also carried a very personal subtext. One that had my stomach in knots from the first frame to the last.

I'm pretty good with my hands. I like problem solving, I'm OK with tools, and I can be creative.
All of this should allow me to indulge in that very male fantasy of convincing myself that I could protect and provide for my family in extremis. I've built shelters. I've killed fish. I've even skinned a rabbit. I am MAN. Hear Me Roar. etc.

But I cannot indulge in the unconditional fantasy. It is all too obvious that I would be screwed in a 'survival situation'. If I made it through the first few months without succumbing to some kind of infection (which I struggle to do in this most first world of situations without medication by the lorry load), then I would most likely be first into the pot. Hell, I could even join in and eat my own legs for starters.

In living with paraplegia, I have learned to *unfortunate analogy alert* tread a fine line. I am independent. I contribute economically and socially, I am a fully engaged and involved father. Penny even went to Portugal last month, leaving me alone with TWO KIDS for a whole weekend (Please send medals to the usual address).

But I am also all too aware that it doesn't take much for me to fall off. Persistent UTI's are annoying, but can also mean spending a few days in bed. And let's not dwell on last summer's extended hospital stay with septicaemia, or the exhausting 'bad day' battles with pain levels above the normal 'general unpleasantries'. I take five or six different medications every day, I need five or six intermittent catheters a day, and then there's the wheelchair and the pressure relieving cushion. And all of this is just the 'treading water' stuff. I'm reasonably fit and active, but I still have other issues that need attention and medical support.

But the biggest battle in my daily life is the mental one. It's not what I think about, but rather what I don't. A good illustration: I don't like accepting help from people. This is partly because I'm bloody minded, and I need to know I can manage in case there isn't someone on hand to help me. But there is another reason. In accepting help, I am being reminded that I am disabled. This is why I don't like 'ring for assistance' signs instead of ramps or whatever the assistance is needed for. I Don't want assistance. I want to be able to think about something other than my limitations.

It turns out that my film-viewing tastes now reflect this desire, too.  Perhaps I'll put off watching Into The Wild for now. I might also steer clear of re-watching Touching The Void....

Drivers and those that aren't everyone...

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In the process of booking our summer trip across Europe by train (it seemed a good idea when we started), I have encountered some interesting language.

In some cases, the phrases strongly suggest that translation has been an issue. Still, I am looking forward to staying in a hotel in Innsbruck where our room will be accessible for a 'wheelchair driver.' Must remember to sport a helmet, silk scarf and goggles.

But my favourite example of a rather over-thought phrase comes courtesy of the wonderful Swiss city of Bern, that provides,
 'The City Guide For Anyone Who's Not Like Everyone.'

At the risk of entering turbulent philosophical waters, don't we all consider ourselves to be 'not like everyone'? Isn't this what drives our search for an identity? Even when that identity is of a religious or nationalist nature, aren't we still defining ourselves as much by who we are not as by who we are? Am I reading too much into this? Does anyone care? Does everyone care? It's clear that inclusive language can quickly lead to an existential crisis.

The rest of the booking process has proved problematic. Yet again we have come up against a widely held view that disabled people don't have children. One booking agent offered myself and Penny a space in one carriage, and Rosalie (6) and Felix (1) seats elsewhere on the train (we have also come up against hotels who will only allow one child in their accessible room).

There is certainly tremendous potential for the railway network to provide a great alternative to air travel. The train should eliminate the stresses of wheelchair versus baggage handler, and trying to time the journey around large periods without access to a toilet. We shall see...

On parenting for the BBC

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A shift in perspective.

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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."

When four makes two

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Rreading.jpgWith 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.


I want to hold your hand

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We took a walk with friends on Sunday in an effort to blow away the cobwebs and cabin fever that inevitably follows a cold and damp Christmas. Our friends' daughter V is nearly 3 and in awe of Rosalie. To her eyes, five and a half is obviously really grown up.

Anyway, V was intent on holding Rosalie's hand all day, but each time they reconnected there was this strange elaborate handshake process, like some kind of (Sesame) street gang. After watching this a couple of times, I realised the problem. As they are both children (and therefore usually shorter than their hand-holding partner), they both expect to be the 'under' hand in the clinch.

This reminded me of a conversation that I had recently with a participant on a wheelchair skills training session. She mentioned the frustration that her daughter feels in not being able to hold her mother's hand. I was able to tell her that, now Rosalie is a little older, we are able to hold hand occasionally.  Yes, we need fairly flat ground, but the main change is that Rosalie is a little taller and a little stronger, so that she now gives me something to pull on to keep myself straight.

Once again, we are learning together. Once again, I am both excited and daunted by the prospect of having a new child and trying to develop this understanding all over again.

hands.jpg

Freezing fun

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I should explain for those of you overseas, we are having a bit of a Dickensian winter spell. I don't mean kids up the chimney, but rather a thick blanket of snow and empty streets. With the exception of the high streets, the snow in London creates a rather enjoyable peace. The traffic is greatly reduced, the snow muffles the sound, and people who are out and about tend to be in cheerful mood.

This idyll usually lasts a couple of days, before white becomes browny-grey, and everyone gets mightily annoyed by the piles of icy black slush that make the pavements lethal and the roads look like drainage ditches.

Against all the odds, I have been getting out ion the snow. We've even built a snowman. It is still fun. I am pleased that I bought a pair of chunky tyres for the beach, as they are coming in handy for the snow, too.

But even with these wheels, it's very heavy going, trying to get around in a wheelchair when there is four inches of snow on the ground.  I am also conscious of just how cold my legs and feet get, and with the issues around my diminished circulation (as my leg muscles aren't busily pumping the blood around), I have to make sure that I don't get frostbite.

It's one thing to lose a few toes while conquering the North face of the Eiger, quite another to do so while building a snow man in a front garden in Hackney.

On the plus side, I have been able to point out to concerned passers by that, while pushing a wheelchair in thick snow is very hard, at least I don't have to worry about falling over.

For a fraction of a second I pondered the possibility of going sledging in the park with Rosalie (for any Australian cricket fans, I 'm talking about sliding down hills in the snow, not standing around swearing at people). But the prospect of watching my feet catch in the snow before disappearing under my backside as my hips are dislocated to the horror of everyone else on the hill has rather put me off.

Instead I will spend the afternoon making soup and biscuits. And sending Rosalie out in rags to beg a plum pudding or two. Gawd bless us, one and all!

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