In 1978 Lowell George wrote a song titled Two Trains. Its opening lyrics go :
“two trains running, on one line,
one train’s me, the other’s a friend of mine,
feel all right, feel just fine,
I’ll take one train, and leave the other behind.”
I only discovered the pleasures of Lowell’s considerable musical talents in 1981, but I was immediately stuck by his lyrics, and saw in them a very accurate reflection of how I viewed my life as a disabled individual. Being a Gemini doesn’t help matters but I am essentially made up of two halves, one the physical me, and the other the mental me. In my (our) case the physical and mental bodies are not in tune with one another quite the way they should be, but regardless, they are travelling on the same line on this railroad of life. There is little doubt that the physical me is the weaker of the two trains, hense my choosing the mental me as my driving train, and leaving the other lagging behind.
I recently turned fifty, which is something of a feat for a muscular dystrophy sufferer. At my celebratory party I spoke to my gathered friends about the role they had all played in my life, and how their presence along my railroad track had been so important. They had been there when I was fresh out of the railway station, through the flatlands, the dark tunnels, and the twisting mountain passes. Some had manned the junction points which changed the course of my life as I moved through school, into work, new employers and careers, sporting interests, hobbies, travel, and relationships. Others may well share this view, but when I look back I can isolate quite easily at least a half dozen pivotal moments in my life when I met someone, or did something, which changed the course of my rail tracks, to the extent that I find it hard to imagine how my life would have panned out had the meeting or event not taken place. In some cases it sends a shiver down my spine just contemplating anything different, such was the fundamental change brought about by a couple of chance happenings.
There is a school of thought which says that we get the things we deserve. If that is true then I am immensely fortunate to have the quality of folk around me whom I know as friends. During all the daunting challenges and real life changing experiences my friends guided me, influenced me and most of all supported me. At no point in time did I ever feel that my train was alone or driverless, but at the same time none of them ever tried to commandeer my train. I am grateful that my friends were who they were when I met them, I am grateful for who they are today, and I am grateful for who they will be in the future.
And so, after fifty years of travelling down my railroad I look back and see my physical train struggling down the track, noticeably less able than when it started this journey, but still going nonetheless. The mental me is a lot more experienced, wiser, and considerably more cynical, but it is tough and strong and will drag that physical train along by the scruff of its neck if it needs to. Lowell George’s words return, slightly paraphrased :
“feel all right, feel just fine,
I’ll take this one train, with the other just behind.”
Tuesday, June 7, 2011
Monday, May 9, 2011
Beds, Ballots and Boneheads.
I have had a couple of incidents occur recently which presented me with those moments where you want to scratch your head and ask quizzically “what on earth was that all about?”, if only I was able to scratch my head!
The first of these occurred six months ago when the owner of a B&B we were evaluating for access commented to me that a number of potential clients had cancelled bookings because they thought the establishment is too geared towards disabled people. This naturally came as a surprise to him and he had spent a great deal of time and money investing in making his establishment fully wheelchair accessible, something which he thought would be advantageous. In the case of this B&B they had decided to not only modify one of their rooms but most of them with the result that there was sufficient accessible accommodation for up to six wheelchair users and the entire rest of the establishment, lounge dining and swimming pool areas were all accessible. It appeared that these holidaymakers did not wish to share their accommodation with anyone who might be less than perfect. Perhaps they think disability is a contagious disease? The owner of the B&B had also received feedback indicating that his use of the international wheelchair symbol on his street signage, and website, was drawing a negative reaction since able-bodied tourists were interpreting it to mean that the premises were intended for disabled people only.
A sister B&B just a few hundred metres away had also spent considerable investment in making themselves wheelchair accessible and due to negative feedback from potential able-bodied customers they had taken to referring all disabled visitors to the aforementioned B&B. These points were raised with me as matters of genuine concern, not so much because of the time and money invested in the creation of wheelchair access but because the proprietors had a genuine desire to provide accessible accommodation and yet were encountering mindset obstacles which they could not fathom.
Normally I wouldn't dismiss this as just a momentary lapse of reason on the part of some narrow minded holidaymakers were not for the fact that three months later another B&B owner, in another province, in another town, commented to me that many potential clients thought that her establishment was a nursing home for disabled people rather than a B&B, and hence declined to make a booking. She too had made the “mistake” of modifying more than one room to be wheelchair accessible and also ensured that the parking area, garden paths, pool gazebo, tv lounge, dining room and living room were all accessible.
Then completely out of the blue, just a week after the recent municipal elections, comes a letter to one of the local community newspapers, from a certain George Ashsworth of Noordhoek, expressing his displeasure at having to stand in line while disabled voters were ushered to the front of the queue. He believed the disabled should have made use of the special votes system to cast their vote on an earlier day, presumably then out of sight of their fellow Southern Africans. Our urban environment is far from being accessible to all. The train services are out of bounds to us, the bus services are inaccessible, as is the taxi service. Local training colleges and schools are inaccessible, the majority of businesses do not provide access, and even the very voting stations themselves provide limited access. Yet here is an individual who not only fails to understand his good fortune as a citizen, tax payer and rate payer, but sees fit to write a letter complaining when he has to stand back momentarily for his fellow man.
Whilst none of these rather strange interactions are likely to keep me awake at night, and George Ashsworth will likely never know how little I care that he had to wait in line whilst I cast my vote, they do serve as something of a wakeup call as to how out of touch some members of the community are, despite us supposedly being far down the road to equality. What saddens me is that many of these people may well be active members of our society, serving on their local school committee, or working with local municipalities and construction is companies. Their mindsets will lead them to be “exclusive” rather than “inclusive” in their decision-making at home and in business, resulting in the cycle of ignorance being perpetuated. It tells me that the process of education as to the inclusion of disabled people in the broader community has a long way to go, and that we should never take for granted that people have little grasp of the challenges which face us on a daily basis.
The first of these occurred six months ago when the owner of a B&B we were evaluating for access commented to me that a number of potential clients had cancelled bookings because they thought the establishment is too geared towards disabled people. This naturally came as a surprise to him and he had spent a great deal of time and money investing in making his establishment fully wheelchair accessible, something which he thought would be advantageous. In the case of this B&B they had decided to not only modify one of their rooms but most of them with the result that there was sufficient accessible accommodation for up to six wheelchair users and the entire rest of the establishment, lounge dining and swimming pool areas were all accessible. It appeared that these holidaymakers did not wish to share their accommodation with anyone who might be less than perfect. Perhaps they think disability is a contagious disease? The owner of the B&B had also received feedback indicating that his use of the international wheelchair symbol on his street signage, and website, was drawing a negative reaction since able-bodied tourists were interpreting it to mean that the premises were intended for disabled people only.
A sister B&B just a few hundred metres away had also spent considerable investment in making themselves wheelchair accessible and due to negative feedback from potential able-bodied customers they had taken to referring all disabled visitors to the aforementioned B&B. These points were raised with me as matters of genuine concern, not so much because of the time and money invested in the creation of wheelchair access but because the proprietors had a genuine desire to provide accessible accommodation and yet were encountering mindset obstacles which they could not fathom.
Normally I wouldn't dismiss this as just a momentary lapse of reason on the part of some narrow minded holidaymakers were not for the fact that three months later another B&B owner, in another province, in another town, commented to me that many potential clients thought that her establishment was a nursing home for disabled people rather than a B&B, and hence declined to make a booking. She too had made the “mistake” of modifying more than one room to be wheelchair accessible and also ensured that the parking area, garden paths, pool gazebo, tv lounge, dining room and living room were all accessible.
Then completely out of the blue, just a week after the recent municipal elections, comes a letter to one of the local community newspapers, from a certain George Ashsworth of Noordhoek, expressing his displeasure at having to stand in line while disabled voters were ushered to the front of the queue. He believed the disabled should have made use of the special votes system to cast their vote on an earlier day, presumably then out of sight of their fellow Southern Africans. Our urban environment is far from being accessible to all. The train services are out of bounds to us, the bus services are inaccessible, as is the taxi service. Local training colleges and schools are inaccessible, the majority of businesses do not provide access, and even the very voting stations themselves provide limited access. Yet here is an individual who not only fails to understand his good fortune as a citizen, tax payer and rate payer, but sees fit to write a letter complaining when he has to stand back momentarily for his fellow man.
Whilst none of these rather strange interactions are likely to keep me awake at night, and George Ashsworth will likely never know how little I care that he had to wait in line whilst I cast my vote, they do serve as something of a wakeup call as to how out of touch some members of the community are, despite us supposedly being far down the road to equality. What saddens me is that many of these people may well be active members of our society, serving on their local school committee, or working with local municipalities and construction is companies. Their mindsets will lead them to be “exclusive” rather than “inclusive” in their decision-making at home and in business, resulting in the cycle of ignorance being perpetuated. It tells me that the process of education as to the inclusion of disabled people in the broader community has a long way to go, and that we should never take for granted that people have little grasp of the challenges which face us on a daily basis.
Thursday, April 14, 2011
VOTE FOR ME, VOTE FOR ME, VOTE FOR ME FOR THE PRESIDENCY!
Prior our last national elections a disabled friend of mine discovered that her local polling station was inaccessible. She took the matter up with the authorities and received a rather neutral "ho-hum" response, the "Why are you making a fuss?" response which we so often encounter. The matter was escalated, all the way up to parliamentary level, but in all honesty the responses still remained disinterested.
It is important that elected officials at all levels realise that while freedom came to South Africa’s able-bodied citizens back in 1994 the struggle for freedom in the disabled community continues to this day. To prove my point one only need ask how many minutes it would have taken for the entire media industry to descend on a polling station if a woman had been denied entry based on her sex, or a black person had been denied entry based on their colour. Yet for a disabled person it was shrugged off.
This scenario occurs daily, in office blocks, schools, restaurants, public buildings, train stations, and bus terminals. Every flight of stairs, every non-accessible toilet, is a glaring “No Disabled People” sign. We are expected to endure this, to wait, to be patient. Things will improve we are told, yet after 1994 there was no phased approach to the lifting of discriminatory laws. Black people did not need to wait, women did not need to wait, so why must the disabled community wait?
What really galls many of us is that city councils have office bearers supposedly dedicated to promoting the needs of the disabled community. How then is it possible that public buildings are being built at Canal Walk, Parklands, and Steenberg in Cape Town as of this time of writing which are not accessible? How can a council, which supposedly is considering the needs of the disabled community, approve those plans?
Why is it possible for the council to inspect the water, electricity, sewage and road connection details of every single house, mall, shop, office and factory, but they cannot check the access levels? Why is it possible for major hotel chains to hold licenses to do business when they do not provide wheelchair access? How can a hotel be voted best in SA for three consecutive years running yet be completely inaccessible? Why can one open a new restaurant tomorrow without providing access? Why can major corporations open offices today without providing access beyond their foyers? Why are schools free to turn their backs on disabled learners by providing no access? Why can a disabled person not catch a bus in Cape Town? Why are all the train stations not accessible?
The first Year Of The Disabled was held in 1981. We are now 30 years down that road. Thus far the disabled community has relied on the “carrot and stick” approach to encouraging greater inclusion. Everyone want to tread lightly, no-one wants to upset anyone. We should not be having to deal with any of the issues mentioned above. None of it is rocket science. Costs are not a factor if access is provided at the planning stage. It can all be taken care of with the signing of a single document.
The bottom line is that while racial discrimination and gender discrimination are taboo, discrimination against the disabled is not considered to be an important issue. There are no negative consequences to not providing access. Perhaps that needs to change.
Disabled citizens are voters, and ratepayers, and taxpayers, and employers . . . factors which people of influence often forget.
So here is a challenge for our elected officials, from someone who has been disabled for 49 years, permanently wheelchair based for 37 of those, been a taxpayer for 32 years, been a ratepayer for 22 years, and a voter for 32 years.
Until recently I have questioned whether my vote counted for much, but now there is a glimmer of light. As local political parties fracture so our votes hold more power, particularly in the metropolitan areas. Disabled people constitute more than 8% of the population, that is nearly 4-million people, arguably more in the cities. Our freedoms, or lack of, are shared by family and friends. We represent more than just ourselves. Those parties which have our best interests at heart might be viewed more favourably. Those local councils and municipalities which better represent our needs might be recognised as such. To paraphrase a popular line, "Are you with us, or against us?".
In the years which lie ahead the vote of a disgruntled disabled community might just swing an election, either locally, or nationally. Can you afford to see us marginalised much longer?
It is important that elected officials at all levels realise that while freedom came to South Africa’s able-bodied citizens back in 1994 the struggle for freedom in the disabled community continues to this day. To prove my point one only need ask how many minutes it would have taken for the entire media industry to descend on a polling station if a woman had been denied entry based on her sex, or a black person had been denied entry based on their colour. Yet for a disabled person it was shrugged off.
This scenario occurs daily, in office blocks, schools, restaurants, public buildings, train stations, and bus terminals. Every flight of stairs, every non-accessible toilet, is a glaring “No Disabled People” sign. We are expected to endure this, to wait, to be patient. Things will improve we are told, yet after 1994 there was no phased approach to the lifting of discriminatory laws. Black people did not need to wait, women did not need to wait, so why must the disabled community wait?
What really galls many of us is that city councils have office bearers supposedly dedicated to promoting the needs of the disabled community. How then is it possible that public buildings are being built at Canal Walk, Parklands, and Steenberg in Cape Town as of this time of writing which are not accessible? How can a council, which supposedly is considering the needs of the disabled community, approve those plans?
Why is it possible for the council to inspect the water, electricity, sewage and road connection details of every single house, mall, shop, office and factory, but they cannot check the access levels? Why is it possible for major hotel chains to hold licenses to do business when they do not provide wheelchair access? How can a hotel be voted best in SA for three consecutive years running yet be completely inaccessible? Why can one open a new restaurant tomorrow without providing access? Why can major corporations open offices today without providing access beyond their foyers? Why are schools free to turn their backs on disabled learners by providing no access? Why can a disabled person not catch a bus in Cape Town? Why are all the train stations not accessible?
The first Year Of The Disabled was held in 1981. We are now 30 years down that road. Thus far the disabled community has relied on the “carrot and stick” approach to encouraging greater inclusion. Everyone want to tread lightly, no-one wants to upset anyone. We should not be having to deal with any of the issues mentioned above. None of it is rocket science. Costs are not a factor if access is provided at the planning stage. It can all be taken care of with the signing of a single document.
The bottom line is that while racial discrimination and gender discrimination are taboo, discrimination against the disabled is not considered to be an important issue. There are no negative consequences to not providing access. Perhaps that needs to change.
Disabled citizens are voters, and ratepayers, and taxpayers, and employers . . . factors which people of influence often forget.
So here is a challenge for our elected officials, from someone who has been disabled for 49 years, permanently wheelchair based for 37 of those, been a taxpayer for 32 years, been a ratepayer for 22 years, and a voter for 32 years.
Until recently I have questioned whether my vote counted for much, but now there is a glimmer of light. As local political parties fracture so our votes hold more power, particularly in the metropolitan areas. Disabled people constitute more than 8% of the population, that is nearly 4-million people, arguably more in the cities. Our freedoms, or lack of, are shared by family and friends. We represent more than just ourselves. Those parties which have our best interests at heart might be viewed more favourably. Those local councils and municipalities which better represent our needs might be recognised as such. To paraphrase a popular line, "Are you with us, or against us?".
In the years which lie ahead the vote of a disgruntled disabled community might just swing an election, either locally, or nationally. Can you afford to see us marginalised much longer?
Monday, March 21, 2011
Speak Into The Microphone
There is a widely held belief that when you start talking to yourself it is the first sign of impending madness. There is an addendum which says that when you start answering yourself then you really are some way down the road to madness. Well just recently I paid money for a software package which requires you to speak to yourself and in some cases to even correct yourself. I am not quite sure where this places me on the road, but I have to tell you that it is quite a fun route to travel. There are a number voice recognition software packages available. I chose Nuance’s “Dragon NaturallySpeaking” and although it is early days Dragon is proving to be a useful and practical piece of software. I am in fact using it to dictate this article.
When I first became involved in the computer industry in the 1980s we learned how computers were going to take over our lives, make breakfast in the morning, wash our clothes, and generally perform the role of helpers. The whole “home robot” thing. Well, computers have taken over our lives, but perhaps not in the way in which those futurists anticipated. I can't help get the feeling that sometimes we are their helpers, we certainly are at their beck and call. We are wrapped around their proverbial little techno fingers, and they have us performing circus tricks such as reading newspapers on a tiny 80 x 50mm screens, sending hundreds of millions of inane text messages to one another every day, and endlessly checking weather update phone apps. So while much of the computer hardware and software around us is calling the tune perhaps Dragon NaturallySpeaking is more in line with the ideas proposed by the futurists of the 1980s. It is one of the helpers of the software world.
Like most pieces of software it has a host of features and options which can be tailored to one's individual needs, but perhaps the biggest learning curve is that requiring me to speak to my computer. I have been getting a number of strange looks from my housekeeper who cannot determine whether I am speaking on the phone, speaking to her, or losing my mind. I think she has settled on the latter. Dragon claim that one can dictate up to three times faster than one can type and experience indicates this to be correct. Certainly in my case, the muscular dystrophy is slowing down my typing speed, particularly for articles which require 600 to 800 words. I also find that the freedom of being able to sit back and articulate my thoughts as they come to me provides a great deal of freedom of expression. In simple terms it means that I can babble away freely in the knowledge that the computer will keep up a lot easier than my typing fingers ever would.
This software allows one to control the functionality of the computer such as opening and closing different software packages and navigating within those packages but in my case I am comfortable doing that via the keyboard and mouse. Where the software really comes into its own is the dictation of larger amounts of text. Dragon is able to handle multiple languages, even dividing English into subcategories, presumably to enable it to decipher the subtle linguistic differences between "the rain in Spain falls mainly on the plain" and "yo mama like whatz happenin in the hood like". Dragon does seem to place some demand on the computer's operating system and there are moments when it appears to want to gather its thoughts, but I would estimate that any desktop or laptop computer built the last two to three years will comfortably have enough firepower to handle Dragon NaturallySpeaking. In terms of additional hardware all Dragon requires, other than the computer itself, is a reasonably good microphone. The room needs to be quiet, or the microphone needs to be close to one's mouth, both of which will contribute to better speech recognition. A radio or hi-fi playing in the near vicinity leads to a breakdown of speech quality as the computer struggles to decide who to listen to, you or the music. Dragon guides you through an initial introductory process asking you to read out aloud predetermined text in order for it to learn your speech patterns and pronunciation. The odd error does creep in but I would say that at the moment I am achieving a 90% success rate while speaking in a natural manner. From what I understand this software package is constantly analysing one's dictation and using this to try to more accurately predict the speech recognition so in principle Dragon should get more accurate every time it is used.
Every now and then I have a “blonde moment” and I forget to turn off the microphone when the telephone rings. I prattle away for a number of minutes with the caller, turn back to my computer and wonder why the short e-mail which I was attending to prior to the call now contains paragraphs of text accurately detailing the contents of my telephone call. Sometimes these dictating software packages take their jobs too seriously!
Of course the one benefit is that one also gets better at talking to oneself. Perhaps with time I might even advance to the point where I'm answering myself! Now please excuse me as I need to get back to my padded cell.....
When I first became involved in the computer industry in the 1980s we learned how computers were going to take over our lives, make breakfast in the morning, wash our clothes, and generally perform the role of helpers. The whole “home robot” thing. Well, computers have taken over our lives, but perhaps not in the way in which those futurists anticipated. I can't help get the feeling that sometimes we are their helpers, we certainly are at their beck and call. We are wrapped around their proverbial little techno fingers, and they have us performing circus tricks such as reading newspapers on a tiny 80 x 50mm screens, sending hundreds of millions of inane text messages to one another every day, and endlessly checking weather update phone apps. So while much of the computer hardware and software around us is calling the tune perhaps Dragon NaturallySpeaking is more in line with the ideas proposed by the futurists of the 1980s. It is one of the helpers of the software world.
Like most pieces of software it has a host of features and options which can be tailored to one's individual needs, but perhaps the biggest learning curve is that requiring me to speak to my computer. I have been getting a number of strange looks from my housekeeper who cannot determine whether I am speaking on the phone, speaking to her, or losing my mind. I think she has settled on the latter. Dragon claim that one can dictate up to three times faster than one can type and experience indicates this to be correct. Certainly in my case, the muscular dystrophy is slowing down my typing speed, particularly for articles which require 600 to 800 words. I also find that the freedom of being able to sit back and articulate my thoughts as they come to me provides a great deal of freedom of expression. In simple terms it means that I can babble away freely in the knowledge that the computer will keep up a lot easier than my typing fingers ever would.
This software allows one to control the functionality of the computer such as opening and closing different software packages and navigating within those packages but in my case I am comfortable doing that via the keyboard and mouse. Where the software really comes into its own is the dictation of larger amounts of text. Dragon is able to handle multiple languages, even dividing English into subcategories, presumably to enable it to decipher the subtle linguistic differences between "the rain in Spain falls mainly on the plain" and "yo mama like whatz happenin in the hood like". Dragon does seem to place some demand on the computer's operating system and there are moments when it appears to want to gather its thoughts, but I would estimate that any desktop or laptop computer built the last two to three years will comfortably have enough firepower to handle Dragon NaturallySpeaking. In terms of additional hardware all Dragon requires, other than the computer itself, is a reasonably good microphone. The room needs to be quiet, or the microphone needs to be close to one's mouth, both of which will contribute to better speech recognition. A radio or hi-fi playing in the near vicinity leads to a breakdown of speech quality as the computer struggles to decide who to listen to, you or the music. Dragon guides you through an initial introductory process asking you to read out aloud predetermined text in order for it to learn your speech patterns and pronunciation. The odd error does creep in but I would say that at the moment I am achieving a 90% success rate while speaking in a natural manner. From what I understand this software package is constantly analysing one's dictation and using this to try to more accurately predict the speech recognition so in principle Dragon should get more accurate every time it is used.
Every now and then I have a “blonde moment” and I forget to turn off the microphone when the telephone rings. I prattle away for a number of minutes with the caller, turn back to my computer and wonder why the short e-mail which I was attending to prior to the call now contains paragraphs of text accurately detailing the contents of my telephone call. Sometimes these dictating software packages take their jobs too seriously!
Of course the one benefit is that one also gets better at talking to oneself. Perhaps with time I might even advance to the point where I'm answering myself! Now please excuse me as I need to get back to my padded cell.....
Thursday, February 10, 2011
My ELECTRONIC FRIEND
In a previous column I commented on the rise in levels of communication that we are experiencing today, particularly electronic communication via the Internet and eMail. FaceBook, MySpace, Twitter and Skype have risen from nothing to become global communication giants in the space of just a year or two. FaceBook claims to have over 30 million members worldwide, with South Africa boasting of the fifth largest FaceBook membership.
But all is not always as it seems in this brave new communicating world. This was brought home to me some months ago when a friend, Anne, expressed concern about the amount of time her twelve year old daughter was spending chatting with friends on the computer. Curious as to who these "friends" were she asked her daughter, only to find that she had never actually met any of these individuals. They were her electronic friends. Virtual friends if you like. More disconcerting for Anne was that her daughter genuinely thought of these people as her friends. When quizzed about whether or not they might be who they say they are, the daughters reply was an "Oh Ma! You just don't understand".
And therein lies the crux of the matter. Apart from the obvious dangers of paedophilia the more telling point is that an increasing number of us are placing "real people" hats onto electronic names. Even if there is no danger, the very notion that one can view a complete unknown entity, just words on a screen, as a friend is somewhat scary. Using that logic the tooth fairy must be as real as Mom and Dad. It came to pass that there was no "danger" being posed to Anne's daughter other than that she was losing sight of how to measure true friendship.
As if to drive home the point, some weeks ago, on a well known disability forum, a member was exposed as being a fraud. Whether he (or possibly she) was disabled or not is unknown, but in an apparent effort to bond with other forumites they came up with increasingly fanciful stories of hardship. Each new story elicited a new flood of good will and sympathy, and pressure to top the previous hardship. It rapidly descended into a bizarre fiction with one outrageous accident being followed by another close family members death. It read like a B-grade spaghetti western! But the scary thing was that the majority of forumites bought the stories hook, line and sinker. He, or she, was everyone's friend in need. Some even wanted to donate money and gifts. Even when the hoaxer was exposed people still viewed this sad individual as their friend, albeit one who needed help. It proved the point that one can fool most of the people most of the time.
I, more than most, appreciate the benefits of electronic communication and the ease with which we can reach across the world and interact with others. However, the more I use electronic media the more I appreciate the face-to-face friendships which I have. The real flesh 'n blood friends, based on shared experiences over many years. One may often use an electronic medium to reach out to them, I am in daily eMail contact with many of my close friends, but there is the knowledge and foundation of knowing that person personally.
The electronic media is incredibly powerful, and liberating for many of us. But it can also be shallow, fleeting and fake. It is no substitute for the real world experiences which lead to the making and cementing of friendships. There is something about real-life shared experiences which brings people together and creates common bonds. We see it with work colleagues, schoolmates, and sports teams and the common denominator across all of them is that they are real world based, side by side, face to face. More than any other factor it is strong friendships which have guided me through over fourty years of disabled life. It is not to say that similar bonding cannot take place over distance, but somehow those will always be fragile, whereas the closer friendships are strong.
I write this at a time of the year when people around the world take time off to spend it with family and friends. Perhaps, without even being fully aware of their actions, they are confirming that the real measure of genuine friendship is how little physical distance there is between us.
But all is not always as it seems in this brave new communicating world. This was brought home to me some months ago when a friend, Anne, expressed concern about the amount of time her twelve year old daughter was spending chatting with friends on the computer. Curious as to who these "friends" were she asked her daughter, only to find that she had never actually met any of these individuals. They were her electronic friends. Virtual friends if you like. More disconcerting for Anne was that her daughter genuinely thought of these people as her friends. When quizzed about whether or not they might be who they say they are, the daughters reply was an "Oh Ma! You just don't understand".
And therein lies the crux of the matter. Apart from the obvious dangers of paedophilia the more telling point is that an increasing number of us are placing "real people" hats onto electronic names. Even if there is no danger, the very notion that one can view a complete unknown entity, just words on a screen, as a friend is somewhat scary. Using that logic the tooth fairy must be as real as Mom and Dad. It came to pass that there was no "danger" being posed to Anne's daughter other than that she was losing sight of how to measure true friendship.
As if to drive home the point, some weeks ago, on a well known disability forum, a member was exposed as being a fraud. Whether he (or possibly she) was disabled or not is unknown, but in an apparent effort to bond with other forumites they came up with increasingly fanciful stories of hardship. Each new story elicited a new flood of good will and sympathy, and pressure to top the previous hardship. It rapidly descended into a bizarre fiction with one outrageous accident being followed by another close family members death. It read like a B-grade spaghetti western! But the scary thing was that the majority of forumites bought the stories hook, line and sinker. He, or she, was everyone's friend in need. Some even wanted to donate money and gifts. Even when the hoaxer was exposed people still viewed this sad individual as their friend, albeit one who needed help. It proved the point that one can fool most of the people most of the time.
I, more than most, appreciate the benefits of electronic communication and the ease with which we can reach across the world and interact with others. However, the more I use electronic media the more I appreciate the face-to-face friendships which I have. The real flesh 'n blood friends, based on shared experiences over many years. One may often use an electronic medium to reach out to them, I am in daily eMail contact with many of my close friends, but there is the knowledge and foundation of knowing that person personally.
The electronic media is incredibly powerful, and liberating for many of us. But it can also be shallow, fleeting and fake. It is no substitute for the real world experiences which lead to the making and cementing of friendships. There is something about real-life shared experiences which brings people together and creates common bonds. We see it with work colleagues, schoolmates, and sports teams and the common denominator across all of them is that they are real world based, side by side, face to face. More than any other factor it is strong friendships which have guided me through over fourty years of disabled life. It is not to say that similar bonding cannot take place over distance, but somehow those will always be fragile, whereas the closer friendships are strong.
I write this at a time of the year when people around the world take time off to spend it with family and friends. Perhaps, without even being fully aware of their actions, they are confirming that the real measure of genuine friendship is how little physical distance there is between us.
Friday, January 14, 2011
We Are What We Eat
Food is an important part of my life. I guess it is an important part of everyone’s lives since it keeps us from shriveling up and blowing away in the stiff Cape south-easters. But no, in my case it is more than an energy and nutrition source, it is an interest, a hobby, a recreation. I eat because I enjoy the flavours, tastes and textures, not merely for sustenance.
When I think of countries, cities and towns I have visited the first thing which enters my mind are the dishes I have eaten there, then I recall the sights and sounds. I can describe meals I have enjoyed in over nineteen cities as if they were last nights supper. I guess we all have our quirks! My upbringing was in a conservative food environment, healthy, but pretty much three veg and a meat fare. I appeared to abandon that framework quickly on leaving home. I can say with sincerity that I will eat anything put in front of me, other than some bizarre dish concocted to embarrass a tourist or challenge a “Fear Factor” contestant.
A healthy diet can contribute to a healthy life. My dystrophy has taken its toll on my body, and the past thirty two years spent permanently in a wheelchair has added considerably to that toll. I do however have a certain sense of re-assurance that at least by feeding my body correctly I am helping the positive to counter the negative. Every little bit helps, and some of those bits are the mouthfuls of good food we eat.
In the same way as the excessive imbibing of alcohol, and smoking, will damage us even harder than able-bods, so a poor diet will starve our bodies of nutrition, opening the door to further debilitation. It amazed me some time ago when a group of disabled people were asked to list their favourite daily foods and the replies were dominated with items such as fries, hot dogs, hamburgers, waffles, pizza, fish fingers, doughnuts, and desserts. These are treats, not staple food types. When asked their least favourite foods the replies included vegetables, fish, chicken, and pasta. It therefore came as no surprise (to me anyway) when those self same people were able to rattle off a string of drugs and medicines they were taking every day to counteract various ailments.
Someone put an interesting spin on the food question the other day when they posed the question of my favourite “handheld” food. Now I’ve always sorted food in terms of nationality, or type, but never according to its hand-hold-ability. But of course for many of us this “ability” is an important factor. Things like wraps, hamburgers, pizza, muffins, toast, and beer sprang to mind . . . yes, beer is a food type, if it wasn’t how do you account for so many men (and some women) looking so round and satisfied?!
Loretta and I enjoy our noodles, not the easiest of foods to eat when seriously disabled. In days gone by I used to be cautious of eating noodles in public because I tended to make a mess! None of this Italian-style discreet twirling in the spoon nonsense for me! We have traveled to Hong Kong, Singapore, and Australia (which has a huge Asian population) where delicious noodle dishes are standard fare. The East is the home of noodles, centuries before any European adopted them in the name of pasta. Watching the locals eat their noodles I came to realize that there are no "rules". Anything goes. Young and old slurp them, suck them, splatter them and shovel them. It seems only the Italians twirl them. It's not about how you eat your noodles, but more about how you enjoy them.
Some time ago Loretta and I sat down in a traditional Hong Kong diner (small, no English menu, Formica tables, plastic chairs) to a huge plate of delicious noodles. The proprietor, in his sweat stained vest, stood at the head of the table, not two metres away, and watched us eat the entire meal. I’d like to think that it was not the fact that we were probably the only Caucasians that had ever eaten there, or even his fascination with my wheelchair. I think he was marveling at my noodle eating technique!
Although I’ve mastered noodles I haven’t quite triumphed over rice. Gluing it together with a good curry sauce does help keep most of it on the spoon or fork en-route to my mouth, but not always. I have never managed to conquer hamburgers. In fact I struggle with most meals which are sandwiched between two pieces of bread. No matter how much I squash them together most of the filling always seems to escape out the side furthest from my mouth, and onto my shirt or lap! There is clearly a technique, but it has eluded me thus far. And speaking of techniques, and more specifically utensils, I am very much a spoon and fork man. I love Chinese, Japanese and Thai food, but chopsticks are a no-go area for my fingers. Loretta is fully chopstick compliant. She can’t catch a buzzing fly with them (yet), but grains of my pesky rice are no problems for her. I go the spoon route. Isn’t that why they provide them at Oriental restaurants, for us “phingerly challenged” diners?
Years ago a friends mother loaned me something called a “spade”. It is essentially a spoon, with small fork tines, and a slightly sharpened edge along the one side. It has to rank as one of mankind’s finest inventions! With one single utensil one can scoop, spike, and part food. What more does one need?!
Perhaps this is yet another reason for my enjoying food so much. One is constantly being challenged. Sometimes it is the taste buds, sometimes it is the nose, and sometimes it is the basic logistics of how to get it into one’s mouth!
Bon appetit!
When I think of countries, cities and towns I have visited the first thing which enters my mind are the dishes I have eaten there, then I recall the sights and sounds. I can describe meals I have enjoyed in over nineteen cities as if they were last nights supper. I guess we all have our quirks! My upbringing was in a conservative food environment, healthy, but pretty much three veg and a meat fare. I appeared to abandon that framework quickly on leaving home. I can say with sincerity that I will eat anything put in front of me, other than some bizarre dish concocted to embarrass a tourist or challenge a “Fear Factor” contestant.
A healthy diet can contribute to a healthy life. My dystrophy has taken its toll on my body, and the past thirty two years spent permanently in a wheelchair has added considerably to that toll. I do however have a certain sense of re-assurance that at least by feeding my body correctly I am helping the positive to counter the negative. Every little bit helps, and some of those bits are the mouthfuls of good food we eat.
In the same way as the excessive imbibing of alcohol, and smoking, will damage us even harder than able-bods, so a poor diet will starve our bodies of nutrition, opening the door to further debilitation. It amazed me some time ago when a group of disabled people were asked to list their favourite daily foods and the replies were dominated with items such as fries, hot dogs, hamburgers, waffles, pizza, fish fingers, doughnuts, and desserts. These are treats, not staple food types. When asked their least favourite foods the replies included vegetables, fish, chicken, and pasta. It therefore came as no surprise (to me anyway) when those self same people were able to rattle off a string of drugs and medicines they were taking every day to counteract various ailments.
Someone put an interesting spin on the food question the other day when they posed the question of my favourite “handheld” food. Now I’ve always sorted food in terms of nationality, or type, but never according to its hand-hold-ability. But of course for many of us this “ability” is an important factor. Things like wraps, hamburgers, pizza, muffins, toast, and beer sprang to mind . . . yes, beer is a food type, if it wasn’t how do you account for so many men (and some women) looking so round and satisfied?!
Loretta and I enjoy our noodles, not the easiest of foods to eat when seriously disabled. In days gone by I used to be cautious of eating noodles in public because I tended to make a mess! None of this Italian-style discreet twirling in the spoon nonsense for me! We have traveled to Hong Kong, Singapore, and Australia (which has a huge Asian population) where delicious noodle dishes are standard fare. The East is the home of noodles, centuries before any European adopted them in the name of pasta. Watching the locals eat their noodles I came to realize that there are no "rules". Anything goes. Young and old slurp them, suck them, splatter them and shovel them. It seems only the Italians twirl them. It's not about how you eat your noodles, but more about how you enjoy them.
Some time ago Loretta and I sat down in a traditional Hong Kong diner (small, no English menu, Formica tables, plastic chairs) to a huge plate of delicious noodles. The proprietor, in his sweat stained vest, stood at the head of the table, not two metres away, and watched us eat the entire meal. I’d like to think that it was not the fact that we were probably the only Caucasians that had ever eaten there, or even his fascination with my wheelchair. I think he was marveling at my noodle eating technique!
Although I’ve mastered noodles I haven’t quite triumphed over rice. Gluing it together with a good curry sauce does help keep most of it on the spoon or fork en-route to my mouth, but not always. I have never managed to conquer hamburgers. In fact I struggle with most meals which are sandwiched between two pieces of bread. No matter how much I squash them together most of the filling always seems to escape out the side furthest from my mouth, and onto my shirt or lap! There is clearly a technique, but it has eluded me thus far. And speaking of techniques, and more specifically utensils, I am very much a spoon and fork man. I love Chinese, Japanese and Thai food, but chopsticks are a no-go area for my fingers. Loretta is fully chopstick compliant. She can’t catch a buzzing fly with them (yet), but grains of my pesky rice are no problems for her. I go the spoon route. Isn’t that why they provide them at Oriental restaurants, for us “phingerly challenged” diners?
Years ago a friends mother loaned me something called a “spade”. It is essentially a spoon, with small fork tines, and a slightly sharpened edge along the one side. It has to rank as one of mankind’s finest inventions! With one single utensil one can scoop, spike, and part food. What more does one need?!
Perhaps this is yet another reason for my enjoying food so much. One is constantly being challenged. Sometimes it is the taste buds, sometimes it is the nose, and sometimes it is the basic logistics of how to get it into one’s mouth!
Bon appetit!
Wednesday, December 15, 2010
The Cave of Last Retreat
You need a little background information for this piece, and it comes in the form of the BBC’s sit-com "Coupling", in the episode entitled ”The Girl with One Heart” from 2002. In it Susan re-decorates, and removes the lock on their apartments’ toilet door, whereupon the rather eccentric Welshman Jeff reminds us of one of the most important attributes of a toilet, namely "You need to be enclosed. Secure on all sides. Otherwise you can't de-clench". Steve confirms it further by adding "De-clenching is out of the question without a lock on the toilet door”, and then goes on to praise that such a toilet is “Modern man's version of a cave of last retreat”.
And so I sat there, on that proverbial throne, early in the morning, perched above a forest, with rain angling in towards my bare feet, being driven by a stiff 10degC wind, trying to de-clench . . .
I came to realise the truth in Jeff and Steve’s words and to see them in a new light, no longer as insecure sit-com characters, but men imbued with a wisdom which carries well beyond the television screen.
It was one of those moments when you asked yourself how you managed to get to that point? As I begin to lose contact with my increasingly wet and frozen feet I come to the realisation that it is a combination of factors, primarily driven by a misguided sense of adventure, and questionable wheelchair access design. The year was drawing to a close and we wanted, nay needed, to get away for a week or so. The Garden Route beckoned and I recall weighing up where to stay on our second night out of Cape Town. The choice was between a typically characterless 1970’s design accessible cottage located nowhere in particular and overlooking nothing in particular, or a potentially far more exciting treetop accommodation overlooking a forest. That was where common sense, and my normally impeccable research, failed me, as I opted for the latter.
As with most things, misadventures happen in threes, and with the first one now in place, the scene was set for the second to make its appearance, and it came from above. On the road up from Cape Town we passed numerous huge billboards proclaiming the region to be in the grip of a drought, which indeed it was, and for everyone to be water wise. Our arrival was therefore the perfect queue for the heavens to open and make every effort to assuage the lands’ thirst in as short a time as possible. The rain lashed down so hard we were forced to travel at 50km/h on the N2.
The ingredients were now in place for the third misadventure, on our arrival. The design of the wheelchair accessible treetop could perhaps best be described as “the sum of the parts do not make a whole”, or more accurately, not a cohesive whole anyway. The path led to the patio deck, which had no view, it in turn led to the living room, which overlooked the bedroom, which overlooked the bathroom, which overlooked the view. The best seat in the house was in the bath. More importantly, the only seat in the house, the toilet, positioned one with your back to the view, and in a stroke of creative design was open on two sides. Not a window, or a door, in the entire “out” house. It was almost certainly draftier than Steve’s “cave of last retreat”.
And that, dear readers, is how I came to gain respect for Jeff, and Steve, and find myself perched atop a forest, well and truly clenched. On a fine summers morn, with careful planning and mental preparation, one could perhaps have performed the daily ritual successfully, but with the rain hammering down, and the wind howling through, the weather Gods had not only found the bathroom door to be unlocked, but completely missing, and had decided to join me!
And so I sat there, on that proverbial throne, early in the morning, perched above a forest, with rain angling in towards my bare feet, being driven by a stiff 10degC wind, trying to de-clench . . .
I came to realise the truth in Jeff and Steve’s words and to see them in a new light, no longer as insecure sit-com characters, but men imbued with a wisdom which carries well beyond the television screen.
It was one of those moments when you asked yourself how you managed to get to that point? As I begin to lose contact with my increasingly wet and frozen feet I come to the realisation that it is a combination of factors, primarily driven by a misguided sense of adventure, and questionable wheelchair access design. The year was drawing to a close and we wanted, nay needed, to get away for a week or so. The Garden Route beckoned and I recall weighing up where to stay on our second night out of Cape Town. The choice was between a typically characterless 1970’s design accessible cottage located nowhere in particular and overlooking nothing in particular, or a potentially far more exciting treetop accommodation overlooking a forest. That was where common sense, and my normally impeccable research, failed me, as I opted for the latter.
As with most things, misadventures happen in threes, and with the first one now in place, the scene was set for the second to make its appearance, and it came from above. On the road up from Cape Town we passed numerous huge billboards proclaiming the region to be in the grip of a drought, which indeed it was, and for everyone to be water wise. Our arrival was therefore the perfect queue for the heavens to open and make every effort to assuage the lands’ thirst in as short a time as possible. The rain lashed down so hard we were forced to travel at 50km/h on the N2.
The ingredients were now in place for the third misadventure, on our arrival. The design of the wheelchair accessible treetop could perhaps best be described as “the sum of the parts do not make a whole”, or more accurately, not a cohesive whole anyway. The path led to the patio deck, which had no view, it in turn led to the living room, which overlooked the bedroom, which overlooked the bathroom, which overlooked the view. The best seat in the house was in the bath. More importantly, the only seat in the house, the toilet, positioned one with your back to the view, and in a stroke of creative design was open on two sides. Not a window, or a door, in the entire “out” house. It was almost certainly draftier than Steve’s “cave of last retreat”.
And that, dear readers, is how I came to gain respect for Jeff, and Steve, and find myself perched atop a forest, well and truly clenched. On a fine summers morn, with careful planning and mental preparation, one could perhaps have performed the daily ritual successfully, but with the rain hammering down, and the wind howling through, the weather Gods had not only found the bathroom door to be unlocked, but completely missing, and had decided to join me!
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