Duracell used to run an advertising campaign showing a couple of humanoid toys climbing a rocky cliff to demonstrate how their batteries ran longer than other brands. It was hugely popular, and led to people using the phrase “Duracell Man” to describe someone who appeared to have more energy, stamina and endurance than anyone else. It got me thinking about batteries, how important they are in our daily lives, and how different our lives would be without them. Batteries are unobtrusive little things. These days they’re all pretty small, and hide behind neat plastic covers, out of sight, and hence often out of mind. It is therefore something of a wakeup call to look around the house and count the appliances, tools, gadgets and toys which run on battery power.
At the risk of being incredibly boring, let’s run through a list found in most modern homes. The television remote, the DSTv remote, the VCR/DVD remote, the hi-fi remote, the cordless phone, the cellphone, the radio, the bedside alarm clock, the wristwatch, the torch, the digital camera, and the car key immobiliser.
I have discovered a couple of other battery dependent devices lurking around my home . . . my cordless computer keyboard, and it’s cordless mouse, the computer’s uninterrupted power supply, the fax machine, the front door bell, my toothbrush, my security alarm system and its remote, and the garage door remote.
All in all quite an impressive and to some extent intimidating list, many of which are everyday items rather than gadgets. No doubt I have forgotten one or two others, which will spring to mind again when they stop working. I am equally aware that there are other devices out there which I have no experience of, such as electric shavers, hair curlers, Bluetooth devices, and probably a host of kids toys of which I have little knowledge or experience. I do have a good friend who is also a grandfather, and he assures me that they buy batteries for the grandkids toys almost as often as they do bread and milk!
Of course there is one battery in our household which eclipses all others, namely my powerchair battery. Without it I am literally dead in the proverbial water, and my powerchair becomes a lump of useless metal. It is the king of our household's batteries, and receives suitably royal treatment!
There are a number of theories about the charging of powerchair batteries, and everyone seems to have their own view. I believe that there is no hard and fast rule since we all use our powerchairs in different ways, on a variety of surfaces, for alternative times, carrying our individual weights and loads. I follow one very strict rule with regards to the charging of my powerchair battery. Never, ever, disconnect before the battery is fully charged. I watch the charge indicator daily, and when it shows approximately one third of a charge left it gets connected in the evening before I go to bed and is left to charge overnight. No top-ups. No quick half hour charges to "see me through". If the charger gets plugged in, it stays there until the charging process is complete.
I would like to think that this is the reason why, twelve years after purchasing the motorised wheelchair, I am still using the original battery. I follow the same regimen with regards to the charging of my cordless phone, and cellphone, with similar success.
My system of battery management and charging certainly works for me, and has ensured that, like the "Duracell Man", I am always ahead of the pack!
Saturday, July 24, 2010
Thursday, June 24, 2010
The E-Words
No, it has nothing to do with BEE, or BBBEE, or any of the fashionable EE's for that matter. The E's are for Education, Employment, and Environment, and their role in the development of our sense of self-esteem, although, in some form they can be viewed as empowering.
In recent discussions the topic was raised on the sense of self worth, or self-esteem, in disabled people. How is it generated? How is it maintained and encouraged? We were careful not to confuse self confidence with self-esteem. Self confidence was seen as the more "outward" projection of our personality, whereas self-esteem was viewed as an "inner" belief. What you think of yourself when looking in the mirror.
The position of the "Environment" E-word was up for debate. It became a "chicken or egg" (which comes first?) word as it was argued whether a favourable environment needed to come ahead of education and employment, or whether a favourable environment was created from the foundation of education and employment. Be that as it may, its role as one of the three E's was never in doubt.
Whether we like it or not self-esteem is a measuring device. It is our personal "State of the Nation" gauge as to how we feel about ourselves relative to our peers. If our inner report card tells us we're better than others, we feel good about ourselves, and our world looks brighter. Given the importance of a positive mental attitude, and its impact on our physical health, the role of self-esteem in shaping our lives should not be underestimated.
Regardless of ability, or disability, the building blocks for our personal self-esteem lie in our education, which can be carried through to our employment and work, or spread across our family, friends and acquaintances. Remove education and the potential for development of self esteem will be stalled, or at best severely limited. Remove employment and our ability to fulfil our educational prospects becomes blunted, and dependency, the enemy of self-esteem looms on the horizon. Create a negative physical or emotional environment and the prospects for both education and employment become bleak.
Alternatively, when any one or more of the E's is encouraged and developed it can trigger an upliftment in a most positive way. A solid education is the ideal springboard to successful employment. I use the term education broadly, because I see it as being more than simply book learning and the passing of exams. It includes an education of communication, interacting with others, socialising, sport and recreation. It is an education of all the senses, seeing, hearing, and speech.
Employment is a logical progression from the initial Education stage. It might well lead to further education as one seeks to fine tune skills, but this is not a pre-requisite. More importantly, with employment comes the means to gain independence, or put more basically, money. Yes, to some folk it is a dirty word, representative of so many evils of our world, but without it we can do very little in the modern world. It buys us food, and clothes, and homes, and for many of us wheelchairs, and bath hoists. It is also the oil which runs our social life, at restaurants, theatres, and sports events.
And last, but by no means least, we have our chicken or egg E-word, the Environment. I have always believed that disabled people are more instinctively environmentally conscious because we are impacted directly by it. Simply put, it means more to us. Our environment might be created for us by our parents or friends, or a disabled friendly town. It might be created by us through building a wheelchair friendly house or encouraging an employer to make their offices more accessible. Since our environment is a constantly changing thing it also feeds back to us, forcing us to adapt, change, alter and improve our ways of doing things. Consider the impact on our lives of cell phones, accessible buildings, computers, and the Internet in only the last ten years. Our education is never complete. In some cases the creation of a positive environment might have less to do with physical barriers but be more emotional. How we interact with others, and they with us? How much are we encouraged? How much are we trusted? Who believes in us?
Here we reach right to the core of our self esteem, the ability to believe in ourselves, in all our skills and abilities drawn from all the E's. Regardless of which E-word comes first, all three E's need to be in place for self-esteem to flourish.
In recent discussions the topic was raised on the sense of self worth, or self-esteem, in disabled people. How is it generated? How is it maintained and encouraged? We were careful not to confuse self confidence with self-esteem. Self confidence was seen as the more "outward" projection of our personality, whereas self-esteem was viewed as an "inner" belief. What you think of yourself when looking in the mirror.
The position of the "Environment" E-word was up for debate. It became a "chicken or egg" (which comes first?) word as it was argued whether a favourable environment needed to come ahead of education and employment, or whether a favourable environment was created from the foundation of education and employment. Be that as it may, its role as one of the three E's was never in doubt.
Whether we like it or not self-esteem is a measuring device. It is our personal "State of the Nation" gauge as to how we feel about ourselves relative to our peers. If our inner report card tells us we're better than others, we feel good about ourselves, and our world looks brighter. Given the importance of a positive mental attitude, and its impact on our physical health, the role of self-esteem in shaping our lives should not be underestimated.
Regardless of ability, or disability, the building blocks for our personal self-esteem lie in our education, which can be carried through to our employment and work, or spread across our family, friends and acquaintances. Remove education and the potential for development of self esteem will be stalled, or at best severely limited. Remove employment and our ability to fulfil our educational prospects becomes blunted, and dependency, the enemy of self-esteem looms on the horizon. Create a negative physical or emotional environment and the prospects for both education and employment become bleak.
Alternatively, when any one or more of the E's is encouraged and developed it can trigger an upliftment in a most positive way. A solid education is the ideal springboard to successful employment. I use the term education broadly, because I see it as being more than simply book learning and the passing of exams. It includes an education of communication, interacting with others, socialising, sport and recreation. It is an education of all the senses, seeing, hearing, and speech.
Employment is a logical progression from the initial Education stage. It might well lead to further education as one seeks to fine tune skills, but this is not a pre-requisite. More importantly, with employment comes the means to gain independence, or put more basically, money. Yes, to some folk it is a dirty word, representative of so many evils of our world, but without it we can do very little in the modern world. It buys us food, and clothes, and homes, and for many of us wheelchairs, and bath hoists. It is also the oil which runs our social life, at restaurants, theatres, and sports events.
And last, but by no means least, we have our chicken or egg E-word, the Environment. I have always believed that disabled people are more instinctively environmentally conscious because we are impacted directly by it. Simply put, it means more to us. Our environment might be created for us by our parents or friends, or a disabled friendly town. It might be created by us through building a wheelchair friendly house or encouraging an employer to make their offices more accessible. Since our environment is a constantly changing thing it also feeds back to us, forcing us to adapt, change, alter and improve our ways of doing things. Consider the impact on our lives of cell phones, accessible buildings, computers, and the Internet in only the last ten years. Our education is never complete. In some cases the creation of a positive environment might have less to do with physical barriers but be more emotional. How we interact with others, and they with us? How much are we encouraged? How much are we trusted? Who believes in us?
Here we reach right to the core of our self esteem, the ability to believe in ourselves, in all our skills and abilities drawn from all the E's. Regardless of which E-word comes first, all three E's need to be in place for self-esteem to flourish.
Tuesday, May 18, 2010
The Wind In My Face
From the age of two or three an able-bodied person can expect to experience the feeling of air rushing on their faces. In the beginning it must be a strangely exciting sensation and one often sees children getting the same satisfied look on their faces as one sees on dogs with their heads out of car windows. Heads slightly back, eyes wide, and jowels flapping in the breeze. At speed of course it can quickly become bugs in the teeth and some years ago on the back of a bakkie in the Lowveld a friend named Piet swallowed a flying beetle. I'm not sure who was most surprised, Piet at having an early bug breakfast, or “Jonah” the bug.
For a disabled child, or adult for that matter, speed is not a sensation we easily experience, unless it is motorised. No running and no bicycling for us, we have to get our rush of air by artificial means. With speed comes a strange element of independence. It's easy to trundle along in a group, but its fun to accelerate away on one's own, free of assistance.
Some time ago I corresponded with a teacher in the UK who was launching a programme of driving lessons for wheelchair kids. Now there's a job for you! Don't think boring old Alan Johnston on DriveTime . . . "And the chair delivers 55 Newton-metres of torque, and the boot looks like this, and the steering wheel looks like that". Does anybody even know what a Newton-metre is? Think more Jeremy Clarkson and TopGear! . . . Think of four wheel power slides, and limited slip diffs, and smoking rear tyres. Think "fastest chair from a standing start down the studio corridor", or "fastest powerchair lap around the TopGear parking lot".
Anyway, to return to our intrepid wheelchair driving school teacher . . . He (she? can you tell the difference via eMail?) was developing a course to teach newly disabled kids how to handle chairs, both manual and power. Rather than saying "don't wheel fast" they were saying "let's teach you how to handle this thing". We all know that there is nothing more dangerous than a new rollerblader, drifting slowly down a slope with their arms flailing in every direction, ready to latch on to any upright object (which might be you) and cling on. Far better a fast, agile rollerblader who blasts past you in perfect control and balance. So the driving instuctor was going to build a slalom course of big cushions, drums, driving cones, etc and they were going to invite the local traffic police to add some fun with their uniforms and white gloves. I think that is smart, it is innovative, and if done correctly will result in wheelchair users who can not only wheel with safety and sureity, but will also feel confident about themselves and their mode of transport.
The Mother Grundy's out there can chill for a moment. This is not a piece in praise of dodgem cars. Any fool can drive a powerchair into a wall. It's not how many people you hit, but how many you miss. I'll keep the slow speed and fixed stare on the patch of ground immediately in front of me for my later years when I need to strap a walking cane to my joystick.
I drive my powerchair heads up. I like the feeling of the wind on my face. My jowels don't flap just yet, but no doubt that will come in time. I want to see the slight look of panic in other pedestrians eyes as the 10m distance between us closes rapidly and they have to decide whether to step right or left . . . or will he step right or left? . . . now 7m . . . no, powerchairs can't step right or left! . . . now it's 5m . . . must I stop or will he stop? . . . 3m . . . I better do the stepping and do it now! . . . WHOOOOSH !!
For a disabled child, or adult for that matter, speed is not a sensation we easily experience, unless it is motorised. No running and no bicycling for us, we have to get our rush of air by artificial means. With speed comes a strange element of independence. It's easy to trundle along in a group, but its fun to accelerate away on one's own, free of assistance.
Some time ago I corresponded with a teacher in the UK who was launching a programme of driving lessons for wheelchair kids. Now there's a job for you! Don't think boring old Alan Johnston on DriveTime . . . "And the chair delivers 55 Newton-metres of torque, and the boot looks like this, and the steering wheel looks like that". Does anybody even know what a Newton-metre is? Think more Jeremy Clarkson and TopGear! . . . Think of four wheel power slides, and limited slip diffs, and smoking rear tyres. Think "fastest chair from a standing start down the studio corridor", or "fastest powerchair lap around the TopGear parking lot".
Anyway, to return to our intrepid wheelchair driving school teacher . . . He (she? can you tell the difference via eMail?) was developing a course to teach newly disabled kids how to handle chairs, both manual and power. Rather than saying "don't wheel fast" they were saying "let's teach you how to handle this thing". We all know that there is nothing more dangerous than a new rollerblader, drifting slowly down a slope with their arms flailing in every direction, ready to latch on to any upright object (which might be you) and cling on. Far better a fast, agile rollerblader who blasts past you in perfect control and balance. So the driving instuctor was going to build a slalom course of big cushions, drums, driving cones, etc and they were going to invite the local traffic police to add some fun with their uniforms and white gloves. I think that is smart, it is innovative, and if done correctly will result in wheelchair users who can not only wheel with safety and sureity, but will also feel confident about themselves and their mode of transport.
The Mother Grundy's out there can chill for a moment. This is not a piece in praise of dodgem cars. Any fool can drive a powerchair into a wall. It's not how many people you hit, but how many you miss. I'll keep the slow speed and fixed stare on the patch of ground immediately in front of me for my later years when I need to strap a walking cane to my joystick.
I drive my powerchair heads up. I like the feeling of the wind on my face. My jowels don't flap just yet, but no doubt that will come in time. I want to see the slight look of panic in other pedestrians eyes as the 10m distance between us closes rapidly and they have to decide whether to step right or left . . . or will he step right or left? . . . now 7m . . . no, powerchairs can't step right or left! . . . now it's 5m . . . must I stop or will he stop? . . . 3m . . . I better do the stepping and do it now! . . . WHOOOOSH !!
Wednesday, April 14, 2010
Feel The Heat !
I have a saying, “it’s never too hot”. I mean it. No climate can ever be too hot for me. I watch the international weather report on television and keep an eye out for “Muscat” where the average daytime temperature hovers at around 40 degrees Celcius, and I think to myself “if only”! My disability has left me really thin, literally skin and bones, or as one person so aptly put it, a “stickman”. The result is that I lose heat rapidly, and when I do, I struggle to regain it.
The added problem is that my limited muscle strength turns me off wearing layers of warm clothing, gloves, boots, etc. I feel like the proverbial Michelin Man, only less mobile! I’m at my most comfortable in a t-shirt and tracksuit pants, that’s all, and ninety percent of the time I’m also without shoes. My home is my castle, and I like to “walk” around inside it dressed for comfort, not in defiance of the elements. I know people who wear jackets and jerseys inside their own homes. Some even walk around draped in a blanket! It makes no sense to me, unless of course one cannot afford heating.
My hands and fingers feel the cold first, and when they freeze up they stop working, so my priority is always to keep my hands warm. I use a variety of methods, from hugging-a-mug, to immersing my hands into a hand basin of hot water, to holding a nifty gel hand warmer a mate bought me in London. All work, but only for a limited time. The key is my inner body warmth, and for that I need my home to be warm.
It has to be said that our houses in South Africa are not properly insulted, for winter or summer. We live in solid brick and mortar homes but they leak heat like sieves. I recall my first trip to New York in winter, sitting at a window looking out at the snow in the garden, looking down and noticing that the windowsill, and corresponding house wall where I was positioned, was wafer thin, yet I was as warm as toast, while it was snowing outside. For the first time the importance of proper insulation dawned on me. Northern hemisphere prefabricated buildings are better insulated than the most expensive of our southern hemisphere mansions. Somewhere along the way we became lazy in South Africa and missed some important lessons.
Fortunately my wife shares my liking for warmth, which is a good thing. She has more meat on her bones, but will readily admit that she would make a lousy adventure racer, or explorer. Being cold, and possibly wet, is not for her. My mother is the complete opposite. She’s always wanted to travel to the Antarctic, but I warn all interested parties that she will want to sleep with the tent flap open! A good friend of mine has the problem that he likes the cold, and his wife likes the warmth. One of the stranger results of their union is their duvet, which is stitched down the middle, with his side devoid of stuffing, and his wife’s side filled with extra fluff! He sleeps kaalgat, she comes to bed with socks on. Fortunately they love each other!
Only once have we come close to uttering that magical phrase, “I’m too hot”. It was in Las Vegas where the already hot and dry desert air was reflected back at us off the endless concrete pavements, concrete buildings, tarred road surfaces, metal signage, etc. Every hard surface acted as a magnifier and multiplier of the heat. Little wonder they are draining the Colorado River dry to irrigate their fountains and water features. Anything to soften the surroundings. The effect was heightened by the near Arctic setting on all the interior air-conditioning. It made the movement into, or out of, buildings something of a body shocking experience!
By the time you read this we will be moving into winter and I will be eyeing Muscat on the television with envy, and my panel heater with new found affection, whilst the electricity box grins knowingly across at me in the kitchen! We will be entering the season where getting warm, and staying warm, becomes my major priority. Fortunately there are a couple of alternative internal heating methods, such as a good risotto, jambalaya, or Loretta’s famous putanesca, and of course red wine! Sampled often, and in quantity, they help keep the big chill at bay, until we can once again feel the heat.
The added problem is that my limited muscle strength turns me off wearing layers of warm clothing, gloves, boots, etc. I feel like the proverbial Michelin Man, only less mobile! I’m at my most comfortable in a t-shirt and tracksuit pants, that’s all, and ninety percent of the time I’m also without shoes. My home is my castle, and I like to “walk” around inside it dressed for comfort, not in defiance of the elements. I know people who wear jackets and jerseys inside their own homes. Some even walk around draped in a blanket! It makes no sense to me, unless of course one cannot afford heating.
My hands and fingers feel the cold first, and when they freeze up they stop working, so my priority is always to keep my hands warm. I use a variety of methods, from hugging-a-mug, to immersing my hands into a hand basin of hot water, to holding a nifty gel hand warmer a mate bought me in London. All work, but only for a limited time. The key is my inner body warmth, and for that I need my home to be warm.
It has to be said that our houses in South Africa are not properly insulted, for winter or summer. We live in solid brick and mortar homes but they leak heat like sieves. I recall my first trip to New York in winter, sitting at a window looking out at the snow in the garden, looking down and noticing that the windowsill, and corresponding house wall where I was positioned, was wafer thin, yet I was as warm as toast, while it was snowing outside. For the first time the importance of proper insulation dawned on me. Northern hemisphere prefabricated buildings are better insulated than the most expensive of our southern hemisphere mansions. Somewhere along the way we became lazy in South Africa and missed some important lessons.
Fortunately my wife shares my liking for warmth, which is a good thing. She has more meat on her bones, but will readily admit that she would make a lousy adventure racer, or explorer. Being cold, and possibly wet, is not for her. My mother is the complete opposite. She’s always wanted to travel to the Antarctic, but I warn all interested parties that she will want to sleep with the tent flap open! A good friend of mine has the problem that he likes the cold, and his wife likes the warmth. One of the stranger results of their union is their duvet, which is stitched down the middle, with his side devoid of stuffing, and his wife’s side filled with extra fluff! He sleeps kaalgat, she comes to bed with socks on. Fortunately they love each other!
Only once have we come close to uttering that magical phrase, “I’m too hot”. It was in Las Vegas where the already hot and dry desert air was reflected back at us off the endless concrete pavements, concrete buildings, tarred road surfaces, metal signage, etc. Every hard surface acted as a magnifier and multiplier of the heat. Little wonder they are draining the Colorado River dry to irrigate their fountains and water features. Anything to soften the surroundings. The effect was heightened by the near Arctic setting on all the interior air-conditioning. It made the movement into, or out of, buildings something of a body shocking experience!
By the time you read this we will be moving into winter and I will be eyeing Muscat on the television with envy, and my panel heater with new found affection, whilst the electricity box grins knowingly across at me in the kitchen! We will be entering the season where getting warm, and staying warm, becomes my major priority. Fortunately there are a couple of alternative internal heating methods, such as a good risotto, jambalaya, or Loretta’s famous putanesca, and of course red wine! Sampled often, and in quantity, they help keep the big chill at bay, until we can once again feel the heat.
Sunday, March 14, 2010
Tools Of A Primitive Man
I recall someone, somewhere, sometime saying that you could fix a Ford with a piece of wire, a screwdriver and some tape. It is presumeably an urban legend, we all know that Ford's are not worth fixing. It does however serve to remind me of a couple of items which I find indispensable, and which on a scale of high tech to low tech would rank as positively caveman-ish! They are small, unobtrusive, but without them my days would be more difficult and challenging, and I have reached that stage in life where simple and easy are good.
The first is my wheelchair footrest, which consists of a piece of knotted string. OK, so it is not actually string, more parachute cord, but it is knotted. I’ve never found wheelchair footrests comfortable. My first wheelchair, which I took delivery of in 1974, not long after the wheel was invented, came with fixed footrests. They only served two purposes, to carry my school suitcases and those of my mates, and to clip stupid people’s ankles. The next wheelchair came with removable footrests, and that is precisely what happened to them, they were removed. Like the soles of my shoes, my footrests have always remained in pristine condition, untouched my human feet. I’ve been through four sets of footrests, all as shiny new the day I passed them on as the day they arrived. I prefer my piece of knotted string, slung between the two side frames of the chair. It’s a bit hard on my tender bare feet, my usual choice for daily footwear, so I sometimes resort to a converted shoulder bag strap which helps spread the tension across the underside of my feet. With my piece of knotted string my wheelchair is shorter, lighter, better balanced, and as a bonus I can store my footrest in my top pocket!
The second indispensable item I encountered by chance. Many years ago a friend who was in the manufacturing industry loaned me a small folding ruler, but after I had discovered its hidden abilities she never got it back. A little over 15cm long when folded, it can be extended zig-zag fashion to a metre in length. More importantly, each folding section has a notch at the 90 degree point, so one can fold an L, or U, shape into it. I can fold it out to its full length, or I can keep it short and compact, my choice. It makes a brilliant reacher, pusher, puller, or pointer, and it’s quite handy for measuring things too.
Perhaps my most useful, and used, caveman tool is a simple wooden stick. A 40cm wooden dowel, with a rubber stopper on each end. It’s my magic wand, my swizzle stick, my cattle prod. I use it to turn on lights, push television and computer buttons, answer the intercom, and even to cough. Yes, as strange as it sounds, if I’m suffering from some chest congestion, I place one end of the stick against a wall, and the other end on my sternum, lean forward against the stick, and cough. The resistance and pressure generated against my chest allows me a stronger cough. Works like a charm!
Last, but by no means least is my drinking straw. I’ve never been able to sit up in bed, or prop myself up on my side, so since my long months in hospital over 30 years ago I have used a flexible straw when schlurping my morning or evening mug of coffee. I have vivid memories of the milk which we we served in hospital as being delicious. We had competitions with the nurses to suck the milk out our glasses faster than they could pour. The strange things one remembers! Previously I had a source of used drip tubes, which worked perfectly. These days I buy clear plastic tubing, sold by the metre, which keeps me in touch with my coffee for many years.
No doubt, in a medical equipment supply store, one can find fancy aluminium and plastic versions of most of the abovementioned devices. There’s a gadget for virtually everything these days, but I am comfortable with my caveman tools. They cost me nothing, I developed them myself, they’re all an integral part of my home. Heck, if Eskom shuts off our electricity I might even be able to use my magic wand to make fire in my cave!
The first is my wheelchair footrest, which consists of a piece of knotted string. OK, so it is not actually string, more parachute cord, but it is knotted. I’ve never found wheelchair footrests comfortable. My first wheelchair, which I took delivery of in 1974, not long after the wheel was invented, came with fixed footrests. They only served two purposes, to carry my school suitcases and those of my mates, and to clip stupid people’s ankles. The next wheelchair came with removable footrests, and that is precisely what happened to them, they were removed. Like the soles of my shoes, my footrests have always remained in pristine condition, untouched my human feet. I’ve been through four sets of footrests, all as shiny new the day I passed them on as the day they arrived. I prefer my piece of knotted string, slung between the two side frames of the chair. It’s a bit hard on my tender bare feet, my usual choice for daily footwear, so I sometimes resort to a converted shoulder bag strap which helps spread the tension across the underside of my feet. With my piece of knotted string my wheelchair is shorter, lighter, better balanced, and as a bonus I can store my footrest in my top pocket!
The second indispensable item I encountered by chance. Many years ago a friend who was in the manufacturing industry loaned me a small folding ruler, but after I had discovered its hidden abilities she never got it back. A little over 15cm long when folded, it can be extended zig-zag fashion to a metre in length. More importantly, each folding section has a notch at the 90 degree point, so one can fold an L, or U, shape into it. I can fold it out to its full length, or I can keep it short and compact, my choice. It makes a brilliant reacher, pusher, puller, or pointer, and it’s quite handy for measuring things too.
Perhaps my most useful, and used, caveman tool is a simple wooden stick. A 40cm wooden dowel, with a rubber stopper on each end. It’s my magic wand, my swizzle stick, my cattle prod. I use it to turn on lights, push television and computer buttons, answer the intercom, and even to cough. Yes, as strange as it sounds, if I’m suffering from some chest congestion, I place one end of the stick against a wall, and the other end on my sternum, lean forward against the stick, and cough. The resistance and pressure generated against my chest allows me a stronger cough. Works like a charm!
Last, but by no means least is my drinking straw. I’ve never been able to sit up in bed, or prop myself up on my side, so since my long months in hospital over 30 years ago I have used a flexible straw when schlurping my morning or evening mug of coffee. I have vivid memories of the milk which we we served in hospital as being delicious. We had competitions with the nurses to suck the milk out our glasses faster than they could pour. The strange things one remembers! Previously I had a source of used drip tubes, which worked perfectly. These days I buy clear plastic tubing, sold by the metre, which keeps me in touch with my coffee for many years.
No doubt, in a medical equipment supply store, one can find fancy aluminium and plastic versions of most of the abovementioned devices. There’s a gadget for virtually everything these days, but I am comfortable with my caveman tools. They cost me nothing, I developed them myself, they’re all an integral part of my home. Heck, if Eskom shuts off our electricity I might even be able to use my magic wand to make fire in my cave!
Thursday, February 11, 2010
The View From Way Down There
I call my column the view from down here because I believe the millions of us in wheelchairs do experience life from a different level, both physically and emotionally. As a schoolchild I recall joking with the tall kids and asking “What’s the weather like up there?”. We talk about overviews, helicopter views and worm’s eye views. I discovered another view the other day, one a little lower than mine, but brimming with enthusiasm and confidence, but let me start at the beginning . . .
Some time ago a father of a newly disabled daughter commented on an Internet discussion forum that there were no disabled children around. The thought stuck with me, and I wondered whether this was a fact, or merely a perception. Are there relatively fewer disabled children than disabled adults? The answer is both yes and no. Yes there are fewer children than adults, but there are also far too many disabled children. Research conducted at a care home for mentally disabled children revealed that 80% of them came about their state through motor vehicle accidents when their heads were smashed against windshields and dashboards. Add diseases such as ours into the equation, and birth defects, and other accidents and the numbers sadly mount.
So why then do we see so few disabled children in public? I believe the answer lies in a sense of embarrassment on the part of the parents and broader family. I can recall my mother telling me of the torrid times she had to endure when taking me out in public as a disabled child. Endless questioning, and often ridicule and chastisement. Fortunately for me, my mother had a thick skin, or she deliberately put one on. She brushed off the scrutiny and kept me in the public eye. Unfortunately she appeared to be in the minority.
In our local shopping mall, at any one time you can probably count 75 to 100 children under the age of 13, go to the larger malls and one can double or treble that figure easily. Now if 3% of the population is mobility disabled, a conservative figure, then one should see 2 to 3 disabled kids, or 4 to 6, or more. Yet one sees none. Where are they? Why are they being hidden away? What will become of them when they grow up?
In the midst of all this baggage, and social commentary, imagine my surprise therefore to chance upon five year old Angelo as he motored around the V&A Waterfront in his Permobil “Koala” powerchair. With not a care in the world he breezed in and out of stores, flicking the joystick with utmost precision and dexterity. We met in between the coats and trouser racks of an outdoor apparel store, and his interest was immediately pricked by my powerchair. Now we know that when two males meet it is only a matter of time before they begin talking about cars. When two powerchair males meet, well, it is only a matter of time before they begin talking about their motors. And so Angelo quickly demonstrated to me that although his chair might have been lower to the ground than mine it did however have seat elevation, and tilt. He also asked about top speed. Who wouldn’t? I countered that my rapidly greying hair permitted me to travel a bit more sedately. Whew! Off the hook. Then we moved on to manoeuvrability, and control switches, and joystick mounts. Heady stuff that would have a Formula One commentator scrambling for words.
What struck me during our brief time together was the confidence, control and calm that young Angelo possessed. He wasn’t concerned about the throngs of people in the mall, in his powerchair he was his own man. He was in control of his body and the environment he was in. He was secure, and comfortable and confident in his own ability to propel himself. I knew exactly how he felt.
Watching young Angelo weave effortlessly through the shopping mall I could not help but wish that his future would be as clear as the freedom he was experiencing in the moment. Wouldn’t it be liberating if there were more Angelo’s out in the public view? Wouldn’t it be enlightening if more people could be inspired by his presence? Wouldn’t it be encouraging if the public infrastructure was more accommodating to disabled children?
Education, social interaction, employment, and building a home and family were the last things on Angelo’s mind in the V&A Waterfront, and rightly so. Right then, right there, despite his profound disability, he was able to “walk” with his Mom and Dad and siblings, just like all the other kids in the mall.
Some time ago a father of a newly disabled daughter commented on an Internet discussion forum that there were no disabled children around. The thought stuck with me, and I wondered whether this was a fact, or merely a perception. Are there relatively fewer disabled children than disabled adults? The answer is both yes and no. Yes there are fewer children than adults, but there are also far too many disabled children. Research conducted at a care home for mentally disabled children revealed that 80% of them came about their state through motor vehicle accidents when their heads were smashed against windshields and dashboards. Add diseases such as ours into the equation, and birth defects, and other accidents and the numbers sadly mount.
So why then do we see so few disabled children in public? I believe the answer lies in a sense of embarrassment on the part of the parents and broader family. I can recall my mother telling me of the torrid times she had to endure when taking me out in public as a disabled child. Endless questioning, and often ridicule and chastisement. Fortunately for me, my mother had a thick skin, or she deliberately put one on. She brushed off the scrutiny and kept me in the public eye. Unfortunately she appeared to be in the minority.
In our local shopping mall, at any one time you can probably count 75 to 100 children under the age of 13, go to the larger malls and one can double or treble that figure easily. Now if 3% of the population is mobility disabled, a conservative figure, then one should see 2 to 3 disabled kids, or 4 to 6, or more. Yet one sees none. Where are they? Why are they being hidden away? What will become of them when they grow up?
In the midst of all this baggage, and social commentary, imagine my surprise therefore to chance upon five year old Angelo as he motored around the V&A Waterfront in his Permobil “Koala” powerchair. With not a care in the world he breezed in and out of stores, flicking the joystick with utmost precision and dexterity. We met in between the coats and trouser racks of an outdoor apparel store, and his interest was immediately pricked by my powerchair. Now we know that when two males meet it is only a matter of time before they begin talking about cars. When two powerchair males meet, well, it is only a matter of time before they begin talking about their motors. And so Angelo quickly demonstrated to me that although his chair might have been lower to the ground than mine it did however have seat elevation, and tilt. He also asked about top speed. Who wouldn’t? I countered that my rapidly greying hair permitted me to travel a bit more sedately. Whew! Off the hook. Then we moved on to manoeuvrability, and control switches, and joystick mounts. Heady stuff that would have a Formula One commentator scrambling for words.
What struck me during our brief time together was the confidence, control and calm that young Angelo possessed. He wasn’t concerned about the throngs of people in the mall, in his powerchair he was his own man. He was in control of his body and the environment he was in. He was secure, and comfortable and confident in his own ability to propel himself. I knew exactly how he felt.
Watching young Angelo weave effortlessly through the shopping mall I could not help but wish that his future would be as clear as the freedom he was experiencing in the moment. Wouldn’t it be liberating if there were more Angelo’s out in the public view? Wouldn’t it be enlightening if more people could be inspired by his presence? Wouldn’t it be encouraging if the public infrastructure was more accommodating to disabled children?
Education, social interaction, employment, and building a home and family were the last things on Angelo’s mind in the V&A Waterfront, and rightly so. Right then, right there, despite his profound disability, he was able to “walk” with his Mom and Dad and siblings, just like all the other kids in the mall.
Tuesday, January 5, 2010
Attitude
When I hear the term "attitude" being applied to an individual I have this picture pop up in my mind of a gangster rapper, hand on hip, staring over the top of their shades, or one of those big African American ladies who talks while wiggling her neck from side to side.
It's a Hollywood vision, but attitude is more than a show. It is a philosophy, a mindset, a character trait, one we, as disabled, need plenty of. It is the space that separates success from failure, happiness from despair, achievement from indifference. Attitude is not necessarily something you "have", like a bad mood, or a common cold. It is rather something which is inside one's core being, a sort of "inner outlook" which governs how we go about our lives. Some people with really profound levels of disability achieve success, whilst others with relatively minor afflictions struggle and often fall by the wayside. No-one knows how our disability affects our lives and our persona other than ourselves, but our attitude to it, and the environment surrounding us is what determines whether we succeed or fail in managing and living with our disability.
Attitude is influenced by our knowledge, education, skills, support structure and economic situation. I say influenced, because having one or more of these is no guarantee of success. It is what we make of them which really matters. They are floating opportunities bobbing around us in a swimming pool. We can reach out and embrace one or more of them, or we can push them away. Either way it will affect how we cope in that pool, how long we can stay afloat, and whether we enjoy the swim!
This is perhaps particularly relevant to MD sufferers since so many of us contracted the disease as children. How we were raised influenced our attitude, and formed the foundation of our adult character. If that character did not "fit" with our later reality of education, employment, independent living, friendships, etc then it placed us at odds with all around us, a situation which would in turn influence our attitude. It is easy to see how a negative attitude can quickly become self-perpetuating, but of course the opposite is also true. It is vital that young disabled individuals are developed to have a high self-esteem, positive view of themselves, and never under-estimated. Failure to do so will damage their attitude, something which could end up being as debilitating as their physical condition.
Into this whole attitude equation we also need to factor in our life expectations. What do we expect from family, friends, work, the government or religion? The combination of our attitude "to" things, and our expectations "of" things determines how we are likely to deal with life. Those who enjoy success in their disabled lives generally have the ability to blur the lines between disability and able-bodied.
We cannot clearly define exactly what attitude is but we know that the presence of disability can magnify its effects. A bad environment can affect us negatively, but we can grab hold of a good thing, absorb it, and use it to break out into a better environment. Whether we take advantage of opportunities or allow them to overwhelm us is determined by our attitude. It is something which is very definitely within our control. We cannot change the way we feel, but we can change the way we see things, and that will change the way we feel.
Some believe we are either "hard wired", like an electrical circuit, to deal with disability, or we are not. You can cope, or you can't. Simple as that. It is an interesting theory, but not one I am entirely convinced of. I believe we can change, and just as our disability changes us physically so we can change mentally and emotionally to adapt to it. Our biggest obstacle is sitting on top of our shoulders. As our set of abilities changes so we need to assess what we can do, and live within those abilities. We have a disability which is trying to take control of our lives and our attitude is going to determine how we keep control. The physical realities can often outweigh optimism but that's not a reason to give in. It takes time and a re-learning of life, to gain the ability to live freely.
Attitude is a defining characteristic in determining if an individual will reach their full potential, irrespective of disability. Someone once said life is 10% of what happens to you and 90% of what you make of it. In our quest to find our goals and the means to achieve them it might be worthwhile to reflect on these words . . .
"So judge not another for their toil,
It’s to themselves they answer in life,
Be it truth or lie,
To God they answer when they die,
The real why." . . . . . (Ralf, Nikkei)
It's a Hollywood vision, but attitude is more than a show. It is a philosophy, a mindset, a character trait, one we, as disabled, need plenty of. It is the space that separates success from failure, happiness from despair, achievement from indifference. Attitude is not necessarily something you "have", like a bad mood, or a common cold. It is rather something which is inside one's core being, a sort of "inner outlook" which governs how we go about our lives. Some people with really profound levels of disability achieve success, whilst others with relatively minor afflictions struggle and often fall by the wayside. No-one knows how our disability affects our lives and our persona other than ourselves, but our attitude to it, and the environment surrounding us is what determines whether we succeed or fail in managing and living with our disability.
Attitude is influenced by our knowledge, education, skills, support structure and economic situation. I say influenced, because having one or more of these is no guarantee of success. It is what we make of them which really matters. They are floating opportunities bobbing around us in a swimming pool. We can reach out and embrace one or more of them, or we can push them away. Either way it will affect how we cope in that pool, how long we can stay afloat, and whether we enjoy the swim!
This is perhaps particularly relevant to MD sufferers since so many of us contracted the disease as children. How we were raised influenced our attitude, and formed the foundation of our adult character. If that character did not "fit" with our later reality of education, employment, independent living, friendships, etc then it placed us at odds with all around us, a situation which would in turn influence our attitude. It is easy to see how a negative attitude can quickly become self-perpetuating, but of course the opposite is also true. It is vital that young disabled individuals are developed to have a high self-esteem, positive view of themselves, and never under-estimated. Failure to do so will damage their attitude, something which could end up being as debilitating as their physical condition.
Into this whole attitude equation we also need to factor in our life expectations. What do we expect from family, friends, work, the government or religion? The combination of our attitude "to" things, and our expectations "of" things determines how we are likely to deal with life. Those who enjoy success in their disabled lives generally have the ability to blur the lines between disability and able-bodied.
We cannot clearly define exactly what attitude is but we know that the presence of disability can magnify its effects. A bad environment can affect us negatively, but we can grab hold of a good thing, absorb it, and use it to break out into a better environment. Whether we take advantage of opportunities or allow them to overwhelm us is determined by our attitude. It is something which is very definitely within our control. We cannot change the way we feel, but we can change the way we see things, and that will change the way we feel.
Some believe we are either "hard wired", like an electrical circuit, to deal with disability, or we are not. You can cope, or you can't. Simple as that. It is an interesting theory, but not one I am entirely convinced of. I believe we can change, and just as our disability changes us physically so we can change mentally and emotionally to adapt to it. Our biggest obstacle is sitting on top of our shoulders. As our set of abilities changes so we need to assess what we can do, and live within those abilities. We have a disability which is trying to take control of our lives and our attitude is going to determine how we keep control. The physical realities can often outweigh optimism but that's not a reason to give in. It takes time and a re-learning of life, to gain the ability to live freely.
Attitude is a defining characteristic in determining if an individual will reach their full potential, irrespective of disability. Someone once said life is 10% of what happens to you and 90% of what you make of it. In our quest to find our goals and the means to achieve them it might be worthwhile to reflect on these words . . .
"So judge not another for their toil,
It’s to themselves they answer in life,
Be it truth or lie,
To God they answer when they die,
The real why." . . . . . (Ralf, Nikkei)
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