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."
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."
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