Results tagged “disabled dad” from Looking Up

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...

Here's a link to a piece I've written for the BBC on life as a disabled dad.

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."

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.

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.

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!