Category: Humour

Avatar 2

No, this isn’t about the movie, just thought I’d copy the name. Hands up who knows what an avatar is. OK, you didn’t really have to put your hand up. There will be some who don’t know what an avatar is. Which is ironic because if you are reading this on social media you already have one. You may not have realised it. Let’s use The Cambridge dictionary definition:

“An image that represents you in online games, chat rooms etc…” That picture at the top of social media is your avatar.

I like that definition, there are more and fuller ones. Very few avatars are actual true to life photographs of the person. Mine is of course 100% the way I look, rugged good looks and all. What most people do is to create a representation of themselves on their Social Media. But even if you post a photo, it is a staged or your best photo. We choose one that shows us as we want to be seen. Pouting, staring manfully into the distance, smiling, smouldering, eyebrows raised, shoulders back chest out, wistful, wise, you get the picture; no, you are the picture.

What’s the harm in that, you say? Nothing, but it does mean that for anyone we have not met in person, only online, will have a view of us based only upon our avatar.

Let me paint two pictures:

1/ The date: You start to get to know someone online. You like how they look; or at least their avatar, and you get on with them. All your chats are in tune with each other. You like the same music, films, places, activities, this is a perfect match. So you plan to meet. Arriving at the pub you both look around for each other. No need for roses in button holes, or any of that old fashioned nonsense. This is 2023, you know what each other looks like. She is beautiful, he is a hunk. Twenty minutes go by, you pass each other several times; even bump into each other. The average looking girl and the guy with a paunch. You both end up at the bar asking different bar staff if anyone has been asking for you. Overhearing each other you look across in shock. How can these faces, these bodies have been made to look so good. You both glance at you phones, the avatars, turn them around to show the other, then burst out laughing. You are the same people after all.

 

2/ The disguise: there are many people who don’t like the idea of putting a photo of themselves up as an avatar at all. They use all sorts of alternatives. Cartoons, photos of their children, photos of pets, photos of animals, famous people, quotes, or they do put a photo of themselves as a child or a young adult. Not everyone wants to advertise what they look like to the world. After all, not everyone can take the adulation and praise that some of us get on a daily basis. Wait a minute, did I mean adulation and praise? Not everyone has aged as well as me… I wish. Obviously, I do understand the real reasons people chose other avatars. Everyone has a right to their anonymity. Many people are shy of their image. Plus, some of the cartoons and pictures people choose are great fun. I have often thought of changing mine to a cartoon.

I am sure there was also a serious point that I had. Oh yes, disability and illness. It’s a big reason that people use alternate avatars. I understand, being visible as you are when you feel others may judge you, is hard. Having family and friends see you so changed is never easy. You may just not feel up to having a photo. Who am I to make any suggestions here. We all make our own choices. For myself I probably hit a mid point with my avatar. It is a photo of me in my wheelchair, but it is not too recent. I wear a hat to hide part of my face and the fact someone has stolen my hair… oh yes that age, not illness. I wear a bright coloured coat to distract the eye. I am smiling, that is a choice. Does that sound like an odd comment? If you have ever been long term ill and in serious pain, you will understand. You see, I am aware of my own attempts to hide. Put on a brave face to the world. Avatars are the masks we wear and yet they still say something about us.

Well I am off to change my avatar to one of superman, make it more accurate.

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Double Edged Sword

Double edged sword has always struck me as an odd expression. I am not a knight; King Charles take note. If I were, I guess sword fighting is no longer common. Mind you, at school I did do fencing. The amount of gardens I could enclose in an afternoon was outstanding… of course I don’t mean that kind of fencing. En Garde! Parry, lunge, riposte, feint, it was all second nature to me. After all, I did get my bronze certificate in fencing. They don’t give that out for nothing… oh they do. Swimming, fencing and English were the only subjects I enjoyed at school.

Where was I? A double edged sword. Care, what on earth has that got to do with fencing? My mind would make a fascinating study for someone doing psychology, so if you are studying…

Back to the subject at hand, Care, it is a ‘double edged sword.’ That’s what I was thinking. Then I thought, ‘aren’t all swords double edged?’ What do I know about swords and then I remembered I used to fence. You see, there is logic in there.

Right, care is a double edged sword. Are we all agreed? I haven’t even explained myself yet. How can you agree? OK, here we go, hang onto your seats. Buckle up, we are off on an adventure, or at least an idea or two.

When you need care and it is supplied. That is if you are able to find carers in these days of an underfunded and under paid care sector. When carers are as rare as hens teeth. But that’s another blog subject. When you do get carers you have a whole new… I was about to start singing ‘a whole new world,’ but I resisted, I bet you’re relieved. You have a whole new problem. I am not suggesting that the carers are a problem. Mind you, in the 9 years I have had care, they have not all been perfect. That’s me being kind. There have been a few issues. Let’s ignore that for now and look at the majority of carers who are brilliant. We will forget about the lady who turned up to do my care on a mobility buggy, then hobbled in with crutches! She stood there, both hands holding her up with crutches and asked, ‘what do you want me to do first?’ Answers on a postcard. Best to forget that. I obviously have no issue with disability, but we are slightly limited in the physical things we can do. So those of us severely limited ourselves, don’t make the best carers. Back to the subject at hand.

So, the good carers, walk in the door, unhindered. Having parked a car, not a mobility buggy, outside. Then it starts, or rather, it ends. You see, before you have care everything is different. If, like me, you have a partner, they may well be doing a lot, or all your care. That is really hard work for them. One of the main reasons for outside care, if you have complex needs, is to give your partner a break. As a couple, you get settled into a routine. You can get ready as and when you want. No one disrupts that routine. Whereas a carer has a set time to arrive and go. They come in, get you ready and leave. Things are worse if they arrive early or late.

The routine, or lack of it, that you have had, ends when care starts. Things change, which they probably need to. But that’s why it’s a double edged sword. Help and support is needed. Disruption to a routine is hard to adapt to. A new person in your house is difficult to get used to. Routines change and everything is turned on its head.

A new person in your home can feel like an invasion. Much as they are there to support and help, they are also unknown at first. Imagine a complete stranger coming into your house and starting to help you with intimate and personal things. Within a very short space of time they are doing things that most people would struggle to cope with. Who was the last person that wiped your bottom? Have you ever had anyone help you with washing and dressing?

OK, I have given you a glimpse at one side of the sword, the negative. Now the other, the positive. Having a good regular carer, that you get to know, is life changing. They can be so helpful, caring and supportive. In the past, down in Somerset, we had a group of carers who were brilliant. Now that we are in Hartlepool, we are setting things back up again. It can work really well with the right people.

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Visual diagnostics

I don’t know why we need doctors. The amazing visual diagnostic ability of the average person in the street is astounding. People can take one look at a disabled person and immediately know everything about their medical history and make a prognosis. More than that they can see if a person is in pain, tired, dizzy, having balance issues, feeling sick and a myriad of other symptoms all without any diagnostic scanners or instruments.

Yet can these aspiring doctors really be so perfect. Even the most skilled professionals with the best equipment don’t claim the diagnostic speed and accuracy of these amateurs.

Disease and illness are, in the most part, invisible. That might seem an odd thing for me to say. If you ever seen me, I am a full-time wheelchair user. So, you might think my disability is very visible. What we see on the outside, is a part of the effect that an illness or accident has on people’s bodies. It can even be the effect of treatment rather than the illness itself. It’s a bit like viewing an iceberg, you are only seeing a very small part of the whole.

Just to make it even harder to really grasp and understand an illness, disability, or the result of an accident: humans don’t show their full feelings. When you we are limited in some way we try and put on a brave face and push forward as hard as we can; smiling. You really do only see a tiny part of the whole picture.

There needs to be a mindset change in how to look at disabled and long term ill, people. I understand wheelchair use best, as that is how illness has limited me. But not everyone in a wheelchair is the same as me, I realise that. It is possible to need a wheelchair some of the time. It can be a means to travel further than their legs can carry them. That does not mean they are faking it. They need the chair to get around, in some cases that will be because day by day their condition varies. In others it will be because they can’t walk far. Cut them some slack. No one chooses a wheelchair for fun. Wheelchairs are uncomfortable, embarrassing, and difficult. You only have one if you need one. Wheelchairs, especially ones provided by the NHS; do not get issued unless you have a medical need.

Next time you see a wheelchair user be kind and understanding. You don’t know if you might end up in one in the future. Whether that is part time or all the time you will not find it fun. Don’t be quick to put on your doctor hat. Instead put on your caring hat and be understanding. Think, “there but for the grace of God, go I.” Be thankful, be considerate and be kind.

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One Calendar to Rule Them All

I know there are those who wait on my wise words to live their lives… OK, maybe that’s a slight exaggeration.

I was musing the other day, as I looked at the advent calendar, now empty of chocolate. Of course I didn’t eat any chocolate treats; the very idea. I was musing on behalf of everyone else. I am altruistic like that. What happens now your advent calendars are empty?

Some of you have had calendars filled with Lego toys. Others with sweet treats. Some have treated their doggy pals. Others have merely gazed upon pretty pictures. Those who have remembered the ‘reason for the season’ have seen pictures of Jesus, the wise men, stables and other Biblical reminders. Whatever has been behind those 24 doors, it is now over for another year.

But need it be? What if we had a calendar shaped like a heart which ran from December 25th to February 14th? What delights could be behind each of those doors. I will let you ponder a moment…

That’s enough pondering. What about a calendar from February the 15th to Easter, shaped like an egg. I do not need to suggest a small chocolate egg behind each door and a large one behind the last. Oh, I do, well that’s my idea.

Next a calendar running from Easter until Wimbledon, shaped like a Tennis ball. What could that contain? Then one running till the summer holidays shaped like the sun. Or as we are in England, shaped like a rain cloud. Then a Halloween calendar, actually I was sent one of these by an American friend, so they exist, at least in America. Then whilst on the subject of America, we borrow Thanksgiving and have a calendar running till then. Which brings us around to Advent. OK, so we have to extend our Advent calendar a few days.

Of course, we could just simplify it all and have one calendar to rule them all. It starts on December 26th and runs all year. I know, if it was full of small gifts or choccies it would be a bit large. But ingenuity will overcome that. It could hang on the walls in a long strip or be in book form. Maybe it could be delivered monthly.

Now I had better get in there quick before Cadbury’s or Nestle copy my idea and produce a yearly calendar. I am sure there is no other kind of product that enables you to mark each day of the year.

Here is an order link to the years treat Calendar by Nevin: www.yearlycalendarsarebrill.co.org.com.eu.uk.com.ir The calendars are a mere £9999999.99 each and come in a variety of types. If you buy two, we discount you 99p, now that is a bargain. We ship anywhere in the world for a small shipping cost FOB (freight on board, in other words you cover import duties.) It’s a real bargain.

If you have really tried to order one, then don’t blame me. I just had my tongue in my cheek for a bit of after Christmas fun.

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The Prize For The Sneakiest Ad Goes to…

Ever seen a sneaky ad on a game? Of course you have. You play supposedly free games, funded by adverts. Well, I am thinking of starting a competition for the sneakiest advertising.

They have become so incredibility devious. You want to play the game, but first, an ad comes on and you get the option to cut it off. But and it’s a big but. They make the way to cut it off harder and harder to see and easier and easier to get wrong. I’m right aren’t I? They are more slippery than a bar of soap.

Here are some of their tactics:

1/ The scrolling timer at the bottom. You would assume that a timer means you have to wait till the time is up till you can press any button and exit the ad… wrong! You can exit at any point after the exit button appears. But see point 2, they don’t make it easy.

2/ The almost invisible exit button. If you have poor eyesight you will struggle to see it. In ‘days of yore’ the exit button for anything was a x, not for these ads. They can be anything, their favourite is >> because that looks like it means, ‘I want to continue please.’ You won’t want to press that, will you? But you don’t have much choice, the other options take you straight to ordering the app that was advertised. So you press it, and go straight to a page that gives you an option to buy the game. Hang on though, top of that page gradually an x or >> appears. Not too quickly, they want you to order the game from the ad. But when that x or >> appears that really will exit the ad this time. Trouble is that they are starting to put them as white on a white background, have they heard of invisibility, or poor eyesight?

I imagine the advertising execs who think these things up. They have a new idea to catch us innocent punters out. So they run into their boss’s office. The boss is sitting in her large marble floored office, the windows are floor to ceiling and look out on Central Park, New York. She looks from behind her expansive desk at her head exec as he enters, and asks, ‘what is it?’

‘I have it, the best idea yet. Those poor fools will have to click on our links now. There will be no escape.’ Sinister laughter.

The boss temples her fingers and smiles at her exec, ‘go on, you’ve always done well so far.’

‘This is fool proof, the exit button will keep moving when your finger moves towards it.’ He smiles in a way that reminds you of a crocodile.

His boss sits up straight and beams at him, ‘Brilliant! But wait, what about Gen Z, they’re very fast?’

‘I’ve thought of that. If someone actually presses the button, it just takes them to a new selection window. The choices are: 1/ do you want buy the deluxe game 2/ do you want to buy the super deluxe?’

‘You mean there is no option if they don’t want the game?’

‘That’s right.’

‘I love the way your devious little mind works. Get to it now.’ The boss imagines dollar signs in her head.

Am I getting carried away? Of course not, it’s the obvious next step. I just hope the ad execs aren’t reading this. I don’t want to give them ideas.

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Why is Alexa Ignoring Me?

Once upon a time, there was just me and Alexa. She sat next to my bed and sung me songs. If I wondered who was outside, she would show me on her small screen. I never forgot the day or date, when to take my tablets, who was coming, Alexa reminded me. Her pleasant oblong plastic box glowed next to my bed.

Then we bought a second Alexa, it sat in the kitchen among the pots and pans. I never heard her complain of the cooking smells or noise. She just happily passed on messages from the Alexa beside my bed to my wife Mary. That second Alexa timed food and also played songs. If the Alexa by my bed felt any sense of competition, she said nothing to me.

But Mary was not always in the kitchen. What if I wanted to call her when she was elsewhere? Over the months we bought more Alexa’s until every room had one. The first Alexa looked on quietly, she did not seem to mind the growing opposition.

Meanwhile elsewhere, Alexa’s were springing up in homes around the globe. Everywhere you turned she was sitting on a sideboard. Even holiday cottages boasted her presence.

In our own home I discovered a problem. When I call ‘Alexa,’ to whom am I speaking? Alexa obviously had the same thought. Is it any wonder she ignored me? Some may say that my first Alexa had become lazy, and was merely waiting for another newer, younger model to reply first. But is that fair? Could it not be that she was merely confused? If our house were full of Mike’s and you shouted ‘Mike,’ would I know you meant me?

I am going to give Alexa the benefit of the doubt. She is not ignoring me, merely confused, upset maybe at the proliferation of Alexa’s. But not ignoring me.

Now let me see if I can get her to listen, ‘Alexa…’

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Next Stop Hollywood

I’m not sure if I am getting carried away. It would be most unlike me. We have already appeared in a national professional magazine (Inside Housing), The Daily Mail, two local newspapers (Hartlepool Mail & Hartlepool Life) and now we are going to be on ITV national news. They filmed today and the piece goes out in the next week or two. Is it really a big step to assume the BBC will call next. After all they have a few topical news programmes. Then the obvious next step is a Hollywood producer. It’s a natural and obvious progression. Not at all fanciful.

With that in mind and I think I’ve proven it as a possibility. I have started thinking who will play me in a Hollywood Blockbuster. Because it will be Blockbuster, not some B movie. Tom Cruise, seems the obvious lookalike. We are almost twins. True, he is aging less well than me. But, I will overlook that. Kate Winslet is obvious to play Mary.

Given the way Hollywood writers distort facts, my story will change. I will end up as the victim of a motorcycle accident. That would suit Tom Cruise. He is always whizzing around on fast motorbikes without helmets or suitable leathers. No doubt he/me will look very cool in a wheelchair. Yes, I can picture that. Mind you, I already look cool in a wheelchair.

I’m thinking of titles: ‘Top chair,’ ‘Access impossible,’ ‘Access impossible 2,’ ‘Access impossible 3,’ ‘AI4,’ ‘A few good wheelchairs,’ ‘Jack can’t Reach it.’ I’m sure you can join in the ideas.

What do you think? Am I being overly optimistic? Of course not. I am already writing scripts in preparation. It will save time later.

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Technology Fail

Early this morning someone banged on the front door. Mary had not yet woken up. No problem, we have a Ring doorbell. I picked up my telephone and pressed the app. Nothing happened! I don’t panic easily. I grabbed my tablet computer and pressed the app on that… oh, you’re ahead of me. Well, you’re wrong. The Ring app started… eventually. By which time the people by the door had decided to press the doorbell. The app showed them on my tablet. I pressed the microphone button… nothing happened.

What to do? My bedroom is at the front of the house. Over the front door. My bed is next to the window. You’re right. I used my Echo Alexa device to call Mary. That didn’t work. I found out later that her Alexa was turned down to a low volume and she had slept poorly.

Now what? All my technology had failed. I rely on it with my disability. What other way could I contact the people outside my window? A brainwave hit me. I wound up my blind, opened the window and looked out of it. The inconsiderate door knockers were by their van. I called out, ‘did you knock on our door?’ I’m quick like that. ‘Yes,’ they called back. ‘We’re here to sort the leaky guttering.’ This is sounding like a soap.

Who would have guessed that calling out of an open window could work? It never occurred to me before. All you baby boomers, of which I am obviously not one, keep your thoughts to yourself. If you are Gen X, you can join them. I know all you millennials and gen Zeds will be fully behind me. Technology was the only way to answer a door. None of this old fashioned shouting out of windows. I almost felt like a cave man.

Oh well, hopefully Ring service will soon be restored.

(I always have to add with my blogs that I am joking. My tongue is well and truly in my cheek. Yes it happened. But I am not serious in my comments. Otherwise people get so stressed out in the comments.)

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Capacity Overload

There are times in life we all reach our limit. Moments when we say, ‘enough is enough.’ That point when we can go no farther. But… I never expected it to be part way through a McDonald’s meal. Not in my wildest dream did I imagine that.

Picture the scene. A Big Mac and fries. Helping Mary finish her chicken wrap. Plus, here’s the kicker. They had accidentally added an extra Big Mac in the bag. Obviously too late to go back and return it. Besides, last time we got a McDonald’s they made a mistake. This is obviously a belated apology. Part way through my part of the chicken wrap. Sorry the McChicken wrap. Is that the right term? I stopped. I was full up.

I have paused here for you all to faint, shout out, run around. Go to the foot of your stairs. Not eat all of a McDonald’s! What has happened to the world? Doesn’t your stomach have a special compartment for junk food? Sorry McD. It’s right next to the pudding shelf, isn’t it? That place that always has room for a pudding, even after a big meal.

But no! I was full up. Am I ill? Well obviously yes. I mean extra ill. Something has gone very wrong. Normal service will be resumed as soon as possible.

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Wheelchair Etiquette

Well, anyone who knows me, will realise that I am 100% serious. I never have my tongue in my cheek, nor write farcical blogs. Now we’ve established that. Let me outline an important issue that has come to my attention. I was reading on a wheelie site about how to greet a fellow wheelie when out and about.

Now this is an issue that has given me must angst. I never know what’s right. For anyone who is not a wheelchair user, picture the scene. You are out in your wheelchair. You may be in a powered wheelchair. Or being pushed. You may even be self-propelling. Hold on, the motive force is irrelevant. Then you see a wheelchair coming the other way. What do you do? In between feeling awkward and panicking that is.

If you were on your feet and walking along. You could do what most people in that situation do. Pretend your eye level is too high to notice the wheelchair. We are literally out of your sightline. Job done; embarrassing situation averted. No need to think of a suitable reaction. Well, I can’t do that. Even if I wanted to. I am looking straight at the oncoming stranger. They just happen to also be in a wheelchair. Is that some kind of kinship? An automatic bond. A fellowship of the wheel? All friends together. United in our common limitations? How do I react? What do I say?

So, a wheelchair is heading towards me. I needed to repeat that as it was so long ago I last mentioned it. Who is in it? Does it matter anyway? If it was a famous person, or Royalty. The Queen has a fancy golf cart now. So, it could be her, out for a spin in another new bit of equipment. Maybe it’s someone I know. Scrub that. I don’t know anyone local to me in a wheelchair. A stranger is wheeling towards me at speed. Actually, that’s unlikely. They are probably wheeling towards me slowly. I have lots of time to consider my actions. Oh, the angst.

Have you got the scene in your mind? Let me mess that up and add some extra detail. The most likely time I might meet a fellow wheelie is on a wide and straight promenade. As in alongside a beach. Now you are all in the South of France or Spain, sun beating down. Cool off a bit. This is the Northeast of England.

Back to reality. I am wheeling slowly towards a fellow wheelie along the promenade. This is sounding like a Hollywood movie. You’re picturing a romantic moment of meeting. The music swelling. But that is not the right image at all. I am approaching a complete stranger. Unless it is the Queen. I feel like I know her. She’s on my stamps and money. No, its not the queen. Let’s not be silly.

Do I smile, pull a face, ignore them, frown, scowl, say something? Hang on a second, who said that? I am British and an introvert to boot. Maybe there is a secret greeting for two wheelchair users. Are we like the Masons? Do we have a coded wheel bump, or twirl of the chairs that we are meant to do? Is there just a double right eyed wink? That could be tricky if you get it wrong. Just imagine you all take me literally and start doing that. I really need to know what to do.

Answers on a postcard to, ‘WheelsUp, Confused Row, Bea MY M8

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No Fingered Typing

I have a confession to make. Don’t get too excited. It’s not that. Or that. I never learnt to type. It’s not that either.

When I was doing my Open University course in English Lit and a Diploma in Creative Writing. I know, it is incredible that I am actually qualified to write. Who knew, not me. At risk of highly annoying any OU tutors who may be reading this; as if they would be reading it. They have given up on me years ago. I had better get back to the point. When I was taking my OU degree and diploma, don’t forget that. I was disabled and limited. Not as much as now, but significantly. Here’s an aside for anyone thinking of studying who is disabled. There are grants available to help you get any equipment you need to study. Which meant that when I started to study, they realised I was typing with two fingers and gave me a two fingered key board. I could just leave it at that and there will be loads of people trying to buy two fingered key boards. This is the problem with social media. If something is written here; it must be true. So let me be very clear; I was joking. There are no two fingered keyboards. Unless they sell them in the shop with the striped paint.

I hope that cleared up any confusion. In reality there will still be people who believe that there are two fingered key boards. Nothing I say will convince them otherwise.

I really must keep on topic. So the real thing that the OU disability grant gave me was voice recognition software. At the time that was Dragon Naturally Speaking. It enabled me to write and even use my PC using just my voice. Now you are all thinking, ‘so what, we can do that with Siri, Google and Word uncle Tom Cobbly and all.’ Yes, but this was a few years ago. Before every device chatted to you, morning, noon and night. Before you could say, ‘Siri, take a letter.’ And she would say, ‘what?’ Or you could click on a microphone button in Word and an icon sit pulsing, waiting for you to talk. This was even before you could have an argument with Alexa.

These days, I have Word. With that pulsating microphone button. The one problem I find… stage fright. It’s like you have walked out onto a giant stage. The audience is all staring at you. You walk up to the microphone ready to sing. Everything goes quiet. What do you say? Obviously I burst into song. Sorry, I mean that I start dictating amazing literature. The next War and Peace. Booker Prize here I come.

It is all very confusing. People assume because I blog, that I sit typing away for hours on end. In fact I chat to my PC for short periods at a time. Then it talks back, I tell it to be quiet, we eventually get an amazing blog together. Not this one obviously. All my secrets are now out in the open. I can’t type and I like talking to technology; who knew?

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In A Galaxy Far, Far, Away…

Star Wars must be the most disabled conscious movie franchise ever. Unrealistic and silly, of course. But, it has so many disabled people in it. Some play really major roles and are completely unlimited by their disability. Just think of Darth Vader.

Never mind blades or artificial limbs. Take a look at the reconstructive surgery on Star Wars. This was ‘A long time ago,’ not just, a long time ago, but, ‘in a galaxy far, far, away.’ Obviously one that believed in equal access for all. Now it’s true, they had slaves and they went around blowing planets up. No ones perfect. They also didn’t have the best environmental record. Any civilization that has a complete planet as a city, has issues. Then take a look at the amount of metal and technology in their garbage disposal. What about all the stuff they jettison every time they go to light speed? Don’t get me started on their waste of energy. Heating massive empty spaces with ceilings that disappear out of view. Come on evil empire, join the energy saving nations of the universe.

As for health and safety. I don’t think they had thought of it. All those balconies on space stations without railings. The bridges that retract. Then when they do extend, they have no railings. As for the idea of having a power station in your living quarters with an open access to fall into. That’s just asking for trouble. The Evil Emperor did very well not falling into it long before Darth Vader threw him in. That was an accident waiting to happen. Pod racing? Well, it makes all the sports we have look suitable for kids.

But I am blogging about disability. Which is just as well. So I don’t need to look at any of that. Darth Vader is a disability hero. OK, so he may have murdered millions of people. He had his faults. But, he was severely disabled. Only half legs, half arms. Major lung problems. He doesn’t just sound breathless, he was. Yet as he strode around the battle stations. Strangling disobedient Admirals, he looked fit as a flea. It’s just as well he didn’t need to pass any PIP assessment. He would have failed.

Imagine the scene. He would have sent the form back. Truthfully saying that he had no legs below the knees. No arms beyond the elbows. Serious lung problems (COPD maybe?). But with PIP they are not interested in what you have, but what you can do. So they would ask. 1/ How far can you walk. DV would answer. ‘Don’t waste my time with your puny questions. I have a Death Star to inspect. The examiner would check the size of a Death Star and put the answer down as 6 miles+. 2/ Can you lift a bag of potatoes? DV I will rip that generator from the wall and throw it at you. The examiner will look at the generator and estimate the weight at 3 tonne and put, yes. The rest of the questions would go in a similar way. When Darth gets the PIP refusal letter, he would lift the examiner by his neck and say, ‘your lack of respect disappoints me.’

It’s not just Darth who is amazingly able in spite of disability. Luke Skywalker has a false hand. Yet you would never know it. Luke’s Uncle ends up in a flying wheelchair. I want one of those. Why aren’t they around, a long time later, far, far, nearer.

There are even characters whose only human organs seem to be a human heart. That gives a new meaning to a heart transplant. Maybe they do body transplants? Disabled people may not get a blue parking space on Star Wars. But they get flying wheelchairs, robotic parts and complete new robot bodies. I am not queueing up to go to that universe. I don’t fancy everything that goes with it. But if I could pick and choose. Then either a new working body. Or failing that a flying wheelchair.

Oh well, A long time ago, in a galaxy far, far away… they had some crazy ideas about disability.

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The Unexpected Emergency – New version

I didn’t plan on giving Mary a big shock that morning, in fact really it was 111 that should bear the brunt of the blame.

The day started fairly normally, for me. It was 2006, it was the last time we were living in Hartlepool and this was before I had the downturn in 2007 that led to me needing a wheelchair full time. I had a routine blood test at the GP surgery. Except it wasn’t as routine as I hoped. Anyone who has had a blood test will know that the comment, “you’ll feel a slight scratch.” is absurdly optimistic. Most times, not only do you feel a very sharp scratch, but it also aches while they take several tubes of blood. That day I felt absolutely nothing, not the tiniest bit of pain. Not the needle going in, not the ache while it was in, not even the nurses hand on my arm. It’s been said before, I am very fast to react to such things and take action. So obviously I totally ignored it, didn’t mention it to the nurse and went home. I did think about it at the time. My thoughts went like this, “that was odd.” At home I thought again, “that was very odd.” So you can see, I was very on the ball.

Actually “that was odd.” Is a favourite expression of mine. I said it several times when our neighbours house was being burgled. I heard the break in, and I said to Mary, “you don’t see that every night”, as I watched the thieves walking down the road with a TV. My brain churns slowly sometimes.

My brain was working just as fast after I couldn’t feel my arm. At home, I rolled my sleeve up at home and touched my arm, it felt like it had been anaesthetised. Finding a pin I tried sticking it in various parts of my arm but it was numb.

Before you think I am a complete idiot I did wonder about a stroke. So I lifted both arms, which I could do, same strength. I could feel both legs. I looked in the mirror and smiled. My straight and goofy face smiled back. Obviously something was wrong, but it wasn’t likely to be a stroke. Mary was in the kitchen cooking lunch and over the years I had caused her enough panic with my illness. So I decided I would check it out with 111 rather than bother Mary about it. I think 111 was a different number at the time.

Our phone was in the hallway opposite the front door and by the stairs. I sat on the stairs. Mary was through the other side of the front room in the kitchen unable to hear anything as there were two closed doors between us. I explained to the 111 operator that I had a numb arm but I was sure it was not a stroke. She told me to hang on a second, then continued to ask questions. Before she had finished asking her questions there was a knock at the door. I opened it to find two paramedics standing there. We lived just half a mile from the hospital, hence the speedy arrival. I hadn’t even known the operator was requesting paramedics, so I was just a little surprised.

Explaining their arrival the lady on the phone said she had requested them immediately and let me go. I was taken into the front room and wired up to a heart monitor and had an oximeter put on my finger. Mary was still cooking in the kitchen with the door closed oblivious to all this. I was fully checked over, heart, oxygen, blood test. As always with any ambulance visit they offered to take me to the hospital for a full check up, but they could see what I had already said, it was not a stroke. I later found out it was one of the early signs of neurological damage I now know that I have.

It was while the two paramedics were standing over me with all their equipment connected that Mary walked through to say lunch was ready. She took finding two paramedics in high vis jackets, standing over her husband who was wired up to a heart monitor, extremely well. If she was shocked and horrified she hid it very well. Her jaw only momentarily hit the floor and her eyes were only a little wide. I’m also not sure it was a gasp she gave, it could have been a sound from the kitchen. The pressure cooker could have been on.

As I began it certainly wasn’t my plan to shock Mary and as you can now fully see it was really all the fault of the 111 operator anyway.

 

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Star Wars

I have just watched Star Wars IV again. Something hit me that should be obvious to everyone. Luke says it to his aunt and uncle. It is something so stunning, that the whole plot falls apart. It means that whenever Darth Vader doesn’t need to interrogate rebels about the location of their base. Luke’s statement shows the a societal setup, in which being a rebel is just an educational option.

What on earth am I talking about? Luke says, ‘I want to transmit my application to the academy this year.’ Now unless you are going to tell me that Luke was going to the Empires Storm Trooper academy? No, of course not. We know he wasn’t, because when he finally gets to the rebel base, he meets all his mates who went ahead of him. He was planning on going to rebel academy. That well known educational establishment. One of many choices for young people in The Star Wars Universe. Do you want to go to Moisture Farming Tech College? Perhaps get a scholarship based on your droid racing abilities to a mainstream University? Or join your mates at Rebel Training Academy? The RSA (Rebel Scum Academy) as the Empire call it.

So, how should Darth Vader find the rebel base? Obviously, the academy would have promotional material. Advertising, on the Star Wars equivalent of social media, Spacebook.

I have a copy of the advert:

‘Fight The Evil Empire. Gain an education, travel the universe, make friends, become a hero. Visit us on Yarvin 4, or send a sub space message. May the Force be with you.’

Come on Darth, why didn’t you think of that?

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Now on Facebook

Let no one accuse me of rushing into things. I thought it was way beyond time that I had a social media presence (I’m even using the right terms). Mind you, at the moment it is just a copy of the posts on here.

I have a dream. I’m going all visionary now. I have a dream; see. I have a dream. That one day my Facebook site will have its own content. Oh, that wasn’t very exciting. Hardly worth waiting for.

I am told, that having a Facebook site, or any social media presence is advantageous. It is more immediate, more fun and best of all, it’s easier for me to use.

I am not technically challenged. In fact, I am quite clever with mechanical and electronic things. Sorry for the boast. But, I am useless at software. I have always been better at loading operating systems than using them. As for all those apps and programmes on the OS…

Websites, don’t even get me started on websites. In the past I could create a decent one. Then they made these amazing, all singing, all dancing ones. No problem you say, they have built in help systems. They almost create themselves; yeah right. They create themselves a very basic site. Not the one I want.

How did I start out telling you about my new Facebook presence and end up moaning about web site creation? It’s a funny old world.

Check out my new group at: https://www.facebook.com/Howcaring-114666084574910

Remember, the thing about Facebook is that it tracks you. If you say anything bad about my group, I will know. I will have your name, address, inside leg measurement… I am kidding of course. It only tracks likes and dislikes.

Life Is But A Dream

There are mornings that I wake up from a lovely dream. One in which I am walking, running, pain free. As I wake and turn on a light (by voice), the pain hits me first, normally through my eyes. Did you know, it’s not just love that hurts, light hurts too? My head joins the party next and I have not been at a party drinking the night before. So no excuse and nothing to blame. If my body is in an uncooperative mood (it normally is) it stays still for quite a while. When it does deign to move, it makes it’s presence felt. I guess it doesn’t want me to miss out on congratulating it for the effort of moving.

Once I have turned over. That is a big task in itself. Reached for the bed control and sat the bed up a bit. I skipped removing the CPAP. That’s the bit of equipment that keeps me breathing at night. Anyone with sleep apnoea will know about that. I then look around. No point looking at my tablet computer yet. My eyes can’t focus first thing. Just as well I have a good imagination, I just think.

It’s at times like this; every morning. That I have often contemplated the words of that song. ‘Row, row, row your boat.’ Actually, it’s not that bit I contemplate, that would be silly. I think about the words, ‘life is but a dream.’

As a Christian, I know life isn’t a dream. The Matrix is a great movie, but it’s just fiction. Life is reality, dreams are dreams. But as I transition from the sleeping/dream world into a rather painful and limited reality, I do muse. I muse about how nice it would be if this real world were the dream. If the dream world, of walking, running and being pain free were real.

I did not write this as a ‘feel sorry for me’ piece. Nor is it meant to be maudlin. But, if I never write the truth about being disabled and ill. You will think it is all laughs. I smile and laugh because I make that choice. Every morning as I lie in pain, I make that choice. Often I say to myself, ‘come on Michael, pull yourself together.’ I call myself by my full name when I want to chivvy myself along.

I don’t look down on those who can’t do that. Others suffer far more than I. We can never know what another person is going through. Don’t judge someone because they are angry with being ill, disabled or limited. I can’t know the pain of another; neither can you. I can’t understand what you are going through; it could be far worse than me.

If there is one take away message I would want to give, it’s this. I know that we all have struggles in life. Whether we are ill/disabled or not. Life can be hard for us all. Especially at the moment with all the financial burdens and stress.

Be kind to one another. Be gentle and caring. We all need the grace and strength to get through each day. Let’s help each other through it.

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False advertising

I was in a passenger in a car recently, after a long time stuck in bed. I noticed things I had missed before. Road signs that should definitely be highlighted to the advertising standards board.

One sign promises a magnificent Stag at bay. What a treat. Binoculars at the ready. Camera out and focussed. Where will this magnificent beast appear? Will it leap across the road? Should I look out for it on the grass verge, as it nibbles it’s mid morning snack. Will I catch it mid leap, as it sails over the hedgerow?

I can hear that you’ve already gone through this disappointment. You’re pretending that you always knew the truth. There was never a time when you took that sign literally. Your genius knows no bounds. I, on the other hand, am a mere mortal. My knowledge limited. I might even call myself a fool; before you do. Yes, I know now that the sign means wild animal. Now I realise that it means, watch out for anything from a field mouse to a hedgehog, crossing the road. Not exactly a look alike for a stag now are they? All very disappointing.

As if that isn’t bad enough. There is that wonderful sign for antique bellows, plate cameras.

You see them everywhere nowadays. Mary burst my bubble, she said they were telling us those dull grey or yellow boxes were coming up. Yes, speed cameras. In what way does that box with a flash built in, resemble a lovely old Victorian camera? What’s happening to the world?

Still, as we drove along, at least we had a shop selling fairy lights to look forward to.

But no, apparently that was just telling us the traffic lights was ahead.

Getting over that bitter blow, I saw a very exciting couple of advertising boards. The circus must be coming to town. Or a danger act. There are going to be flaming cars and motorcycles leaping across cars.

But apparently those are all just road signs too. Although why we need telling not to carry explosives in our car, I’m not sure. As for the flying motorcycle…

You don’t need to panic about me driving. I was told I couldn’t drive a long time ago; just as well eh?!

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Disability Top Trumps

Did you ever play that game as a child, ‘Top Trumps?’ It came in loads of forms, cars, boats etc. You would deal out cards that listed the specs of whichever list of things you were comparing and play. Let’s say you were playing with cars.

I would have a car with a 2 litre engine, 5 doors and a top speed of 95mph. So I would then decide to choose the engine size and say, 2 litre engine. My fellow players (I was a child, so it would be my brothers) then have to look at their hand of cards and see if they have a car with an engine bigger than that. It always seemed as if one of my brothers could trump me. They would have a V12 engine that had 3.6 litre engine.

You get the idea? Bigger is better. The person going first choses a particular thing, then other people can see if they can trump it.

I never knew until the other day that some people play that with disability. We were chatting to the wife of a disabled man who we had not met. She was checking an access door. We told her that it worked great for getting in to where she wanted to go.

Out of the blue. Instead of just saying thanks, or I knew that. She said, ‘my husband can’t walk or stand. He only has one leg.’ She looked rather accusingly at my two legs. I did wonder if I should hide one. Or just explain that I couldn’t walk or stand either. That was why I was in a wheelchair. But it seemed best to just carry on talking.

Somehow the topic got around to wheelchairs. She told us that her and her husband had every type of wheelchair going. A power chair, a motor scooter. I began to wish that I had brought my V12, 3.6 litre wheelchair out that day, the one with chrome exhausts. She was definitely trumping me. Not that I had realised the game even existed or that I was playing it.

Before our encounter with this lady, I always assumed that everyone had a different limitation, illness or disability. We all make the best of it. She seemed to be bringing a new ‘trump’ element into being disabled or ill. I should say here, that here husband was not with her. So he was not part of her ‘odd approach.’

A bit later we did see him with her; or rather behind her. He was trying to catch her up, pushing his self propelled wheelchair for all he was worth. She never mentioned they had one of those.

There is a moral to this blog. I think the lady in question was probably struggling with being a carer for a man in such need. When we saw him, he did look in need. He was not finding it easy to wheel himself. You might say, ‘why wasn’t she pushing him?’ Perhaps she was coming to the end of her tether. Her, rather unfortunate, way of coping. Was to leave him to struggle and create a make believe world of how great everything was. It struck me that she desperately needs help.

I do know this, a lot of carers, desperately need help. They have a massive weight on their shoulders. We are living in a time when there is a crisis in the support available. A shortage in funding and a shortage in people, linked to the first. The result will be seen in the near future as carers become those needing care. This is not a problem that can be ignored.

I wrote this blog in a deliberately satirical and humorous way to catch your attention. But the message is serious. Carers are struggling, they need help. Only political change can make that happen.

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M&M

Mary & I, M&M as it said on or wedding cake, were eating a pack of M&M sweets; snap. Yes, I know, I don’t eat sweets. I was having a momentary weak moment; I’m allowed. After all I am only human; honest.

As we were sharing this pack, sitting on a branch in a tree watching an outside movie. No… wait… that’s the movie I am about to quote. We were just sharing a pack of M&M’s, no trees were harmed in the writing of this blog. Have you seen the chic flick, ‘Wedding Planner?’ If not, you might as well stop reading this blog now.

I wasn’t serious, keep reading. I am quoting from Wedding Planner, but I will explain. Jennifer Lopez and Matthew McConaughey, are sitting in a tree watching a movie outside in a park; eating a pack of M&M’s. Matt, that’s what I call him whenever he pops around, is doing something odd. You might well say, ‘that’s not unusual.’ Well, just wait and see what he was doing. He was throwing all the M & M’s away. No, hang on, he was keeping the brown ones. He told Jen, that they were a better colour to eat as they had less artificial colouring in them. After all chocolate is brown. What brilliant logic.

Obviously, we get all our nutritional advice from the movies. I am sure you do too. So we were throwing all the coloured M&M’s away. Yes, of course its environmentally friendly. Hollywood stars did it and they all drive Prius’ after all. We then looked at the two, yes just two chocolate coloured ones left. One each, seemed a little amount out of a whole pack. So we picked all the other colours back up. The mud washed right off.

I looked at them and said to Mary, ‘yellow is a natural colour, just look at the sun.’ We ate those. ‘Red is natural, it’s the colour of fire,’ we ate those, ‘green very natural, it’s the colour of grass,’ we ate those, ‘orange is the colour of a cocoa bean husk,’ prove me wrong, we ate those.

There you go, we ate the whole pack, all fully natural. No waste, which is environmentally friendly. All natural colours, which is nutritionally good. I think I have proved that.

In future just take all your food advice from me.

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All Encompassing Fact

You are probably expecting an amazing fact. Not an unreasonable assumption. After all, I have brought you blogs on why we don’t live forever. How to keep things brief. The nature of the universe, among other incredible facts. But no, that is not the purpose of this blog. What is it’s purpose? I wish I knew, I started it so long ago, I’ve forgotten.

I’ve remembered. The brain is getting slower with age, but it is still sharp… ish.  When people ask to swap with me in a wheelchair. Which they do quite often, when they see me sailing up a steep slope. Did I tell you that my power wheelchair can go on water? Well, not literally sailing of course. But powering up a hill effortlessly. For me that is. My wife Mary, who is my full time carer. Has to walk alongside up the steep slope; or behind.

She is actually operating the controls. My chair is dual control (rear and side). I had to sign a bit of paper to the NHS saying, on pain of death. Well maybe not on pain of death, but it was a serious bit of paper. That I would not operate the power chair outside. Because I lose muscle function with very little warning. Those spoil sports didn’t like the idea of me powering into the road, or a crowd of people. I suppose they have a valid point.

As an aside, if Mary is behind my high backed power chair, people don’t see her. They assume I am controlling the chair. As you know, I do not have a sense of humour. So I never take advantage of that misunderstanding. You will never see me closing my eyes or looking all over the place, while my big heavy chair, heads towards a crowd.

If Mary is operating my chair from the control on my left (the one designed for my use in the house), that causes confusion too. She can only do it on wider pavements. People approaching us often assume she is just walking beside me. They are unaware that she is operating the chair. They walk straight at her, expecting her to move out of the way. Not just at her, but looking to pass between her and my chair. She has to let go of the controls and bring us to a sudden halt. This has happened when crossing a road; not my favourite experience.

Where was I. Yes, people saying they want to swap with me in my wheelchair, especially on a hill. I am not alone in this. Most wheelchair users get asked this. You might think, ‘so what?’ or ‘what’s the issue?’ you might even be thinking, ‘I’ve done that.’

Let me put it into a form that might hit home. If you wear glasses and someone said, ‘wish I had those?’ when they couldn’t see a distant object. Or you wear a hearing aid and someone said, ‘wish I could borrow that,’ for a short time they can’t hear a distant voice. Or how about you have dentures and someone at a restaurant, struggling to chew their meat says, ‘wish I could have your dentures.’

Those are silly suggestions, because its a silly question. Wheelchairs are not to get us up a steep hill. They are an all encompassing fact. My answer to anyone who says, ‘I wish I could swap with you,’ is this: ‘sure, you can have it all. The lifetime of limitations and the care needs.’ You don’t pick and choose a wheelchair to help you up a steep slope. It is a frustrating need. Just like you don’t choose poor eyesight or poor hearing. You don’t choose to lose your teeth. If you need a wheelchair, you would rather not. Having someone suggest a swap is fine, if they really wanted to swap everything. But of course they don’t.

An all encompassing fact, means just that. Limitation, illness, disability, differently abled, however you want to describe it. They are not a choice. Someone puffing up a hill and seeing, what to them looks like an easier option, is saying, ‘I choose an easier option.’ Disability, illness, limitation is not it. Perhaps they need to exercise more. Or if that isn’t an option, and they do need mobility help, they shouldn’t look enviously at those in more need, they need to get help themselves.

Limited mobility is not a choice, it is an all encompassing fact, that we end up with by disease, illness or an accident.

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