Incey, Wincey, Spider

I woke this morning to a rather fast visitor. Not a welcome one at that. I was reading on my tablet and I caught a movement out of the corner of my eye. It’s not just T rex that is good at spotting movement. I have noticed that any movement in my peripheral vision gets my attention. This black streak caught my attention. It was streaking in all senses. At least I have never seen a spider wearing clothes. Not that I wish to cast aspersions on arachnids in general. But as far as I know they are nudists. In fact, I believe that goes for the insect world in general. Thinking about it, that goes for animals too. Except the ones kept as pets; which owners decide to dress up.

I may be a little late here: Warning, if you are frightened of spiders do not read this blog. Good, I’ve covered all the safety issues. If you are having a panic attack you can’t blame me.

Anyway, I caught sight of a spider streaking, metaphorically and literally across my floor. I thought, “hang on, I have not read any safety notice warning me that a spider would appear on my floor. I am a little nervous of spiders.” You’ll notice that I don’t say scared. I am a big butch bloke. Bigger than I used to be, mostly around the waist. Although that doesn’t seem to make me any more brave. But, after all, “big boys don’t cry,” I remembered that through the tears. Of course I wasn’t crying, I was far too scared for that. I wanted to keep an eye on my early morning visitor. Tears would have made that difficult.

Did I tell you how huge it was? Now all those of you who share my nervousness about spiders may need a lie down. I already was of course. I said out loud to the spider, “now, if you just stay under my bed,” by now it had hidden under there, “then you and I need not come to blows.” I think it understood, because it stayed quiet. At least I couldn’t see or hear it.

You can come out now. I’m saying that to all of you who are hiding, not to the spider, who I assume is still hiding under my bed in embarrassment. Obviously, he or she, I’m not being sexist. Are spiders ambidextrous? Or is that ambi-sexual? Or do I mean non sexual. No, wait, I seem to remember some female spiders kill the male after sex. That must be a downer. “How was it?…argggh…that bad” So the male or female spider, who is hiding under my bed is maybe waiting for the cover of darkness to cover their embarrassment. Then they will go off and do what spiders do. This is where all of you smart people, who view Spring Watch, Winter Watch and Autumn Watch can tell me what that is. I am assuming that they go out to work? Or have a party? Presumably as they are all nudists, there is a spider nudist beach? I’m just guessing here. So long as it leaves me alone. What I don’t want is to wake up in the night face to face with my friendly neighbourhood spider, comic book reference there. After all, it’s not that I would be scared, oh no. Absolutely paralysed with fear, would be closer to the mark.

Why is that you ask?  It’s a huge spider! At least an inch long. Maybe an inch and a half. But those legs make it seem so much bigger. I wouldn’t mind if it just sat there and told me jokes. Or sat in an armchair and watched TV. But why does it have to run across the floor in that totally unnecessary fashion. Wiggling those hairy legs all over the place. I apologise to all the arachnophobes here. Any of you that are still with me, are still breathing and have not been carted off to hospital that is. Look, if I can write this; you can read it.

I’m not going to get a wink of sleep you know. Still, I shall call out again, “spider, you leave me alone and we can get along just fine.” Do you think that will work? I’m not listening.

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It’s All Downhill From Here

In case you are thinking I’m becoming maudlin, don’t worry. I had a dream, now it sounds like I’m about to start a speech. I had a dream last night in which I was off-roading… in my wheelchair! Unusual, no, impossible more like. I was on my own up a mountain, I say a mountain, but it was a very large hill with rocky sides. I was enjoying myself, whizzing along, wind in my hair. The long dark brown hair blowing behind me; it was a dream. Even though it was a muddy and rutted path, I didn’t notice; it felt smooth. I was looking left and right over the scenery. Swinging my shoulder length hair around; it must have been the 1970’s. Mind you, I was the age I am now, 25ish. I could see the sea over one shoulder; that’s one of those sentences you have to see written down. The other side was miles of open fields. Then I came to a gentle slope downwards so I started to descend.

You need to understand something about a power wheelchair. Well, about my power wheelchair anyway. It is heavy, it weighs around 250kg with me in it. I think it’s around 240kg on its own. Wake up! So, my quarter of a tonne wheelchair was gathering speed down this muddy slope. The incline increased and so did the speed. It increased more as the wheels slipped and I was suddenly at the point of no return. It was too steep to try and turn around, the chair would have tipped over and stopping the power did not stop the chair. I was on a ride to the bottom of that slope. I increased speed and anxiety. The chair picked up mud and rocks. One way or another I was going to the bottom of that slope; it was all downhill from there; don’t you love it when a blog title makes sense? I was terrified and the earlier joy had disappeared. I think we can call it a nightmare.

The funny thing was that as I descended that hill, uncontrolled and rather fast, I did not get hurt. The wheelchair did not turn over or crash. It was as if I was the hero in a comic book movie, I survived. I would say I walked away from it… but hey. It wasn’t a nightmare after all, it was a fun dream.

I don’t normally dream about being in a wheelchair. Even though I have had a wheelchair part time since 2007, that’s 24 years and full time since 2012, that’s 9 years. You would think my mind would see me as a wheelchair user and I would dream of being in one; but no, I dream of me walking. Actually, I dream of running, swimming and even flying; not in a plane. Funny thing the unconscious brain. I wonder if this is the beginning of a series of wheelchair adventures. Where to next? Wheeling along the bottom of the ocean? Flying in a wheelchair with ET on my lap? Wheeling through a deep, dark forest? The sky’s the limit. Actually, it’s not. Wheeling on the surface of the moon? Wheeling around the rings of Saturn? Let’s not get carried away.

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When Did I Become Old?

We had Mary’s niece and children visit yesterday. Two wonderful lads, 8 and 5 years old. As I watched them play, chatted to them and saw their excitement at discovering new things, it brought back memories of our children at their age.

I remembered, being a young dad, rushing around, caring for our children, playing with them. I also remembered the times we visited elderly relatives. How they used to sit looking on and how extremely old they seemed. Yesterday, I had a moment of realisation, I am now the elderly relative, sitting, looking on. I was quite taken aback. I adjusted the blanket on my knee, put the hearing trumpet to my ear, rearranged my dentures, and thought, “I am nothing like they were.” I don’t really have dentures, just far fewer teeth than I started out with.

When did I become old? It has rather snuck up on me. Age seems to be like a stealth plane. You don’t see it coming and then, without any warning, it’s there. I have been merrily pootling along as a young man for years, many years, years and years. Then without a by your leave, age dropped on me like a ton of bricks. I wouldn’t mind, but it gave me no warning. It’s not as if I gradually showed any signs of age. I have kept my youthful good looks, my full head of hair, my wrinkle free skin, my toned body, my imagination and sense of humour all this time. Then overnight I wake up to being an old man. I call it unfair, grossly unfair. How can I possibly be old?

It seems that now is the time. I have held it off long enough. All the old men did it when I was younger. Time for a comb over and Grecian 2000 hair dye. Not sure about the couple of wrinkles; Polyfilla maybe? Actually, not sure what I can comb over, I don’t have any hair left; details, minor details. Do they still sell Grecian 2000? Still, I’ve heard it said, “age is just a number.” Now where did I put the Pollyfilla?

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Changeable Weather

The other day I was struck at how changeable British weather is. I know, I am a genius and should be awarded The Nobel Prize.  Perhaps you could nominate me. I’m sure no one has ever noticed this before. It’s like the observation that British people like to talk about the weather or that we often have fish and chips on a Friday. These are all unique observations I have made. “Well blow me down with a feather!” I can hear you say, or as my Granma used to say, “I’ll go to the foot of our stairs.” You are all so astounded at my observations you can hardly contain yourselves. Perhaps I should turn the comments off on social media. I don’t want to be inundated with praise.

I made this earth shattering observation, because one minute the sun was shining, the next we had a thunderstorm with hail, the next such heavy rain I could barely see over the road out of our window. Then it was back to sunshine, then overcast. Typical British summer really. In fact when you see the average British holiday maker going away in summer, they will have a huge lot of gear with them. If you are from another country you probably assumed us Brits were carrying sandwiches or swimwear. Perhaps you thought we just had a beach tent or wet suit? Maybe you thought we were carrying a tent ready to stop the night somewhere? Well, no, you see when us Brits go on holiday in summer we understand the weather over here. So we pack: A change of clothes, an umbrella (essential all year round), a waterproof mac, wellington boots and sandals (you have to cover all possibilities), a sun hat and a rain hat, a waterproof bag to put things in, then all the normal beach things, sun cream, towels (to lie on, wrap around and dry with), wet suits (this is the UK), water shoes, bucket and spade, beach tent (wind proof, storm force), ground sheet and pegs, food and drink for the whole day (possibly a kettle), football or beach ball, of course all this is too big for a bag. Someone came up with a brilliant invention, I wish they had them when our kids were young. A wheeled trolley to carry all your necessary beach gear; essential UK beach gear. It’s the size of a small truck, 7.5 tonne probably, and it looks brilliant, six wheeled and articulated.

I didn’t write this blog to advertise push along HGV’s though; as brilliant as they are. All this changeable weather, don’t forget I noticed it first, has another implication. When you are in the midst of troubles, when things seem dark and impossible to bear. When life feels like a very dark and forbidding place. Remember, light will come again. It doesn’t feel like it; I know. If anyone has a right to say this it’s me. I do understand what it is to have everything pulled from under you. Not just the rug of your life; but the floor itself. I do know what it feels like to lose the life you were living. To have your job, your health and what feels like all hope and future snatched away. Read some of my biography blogs if you want to see what happened. But the sun is still behind the clouds. The weather keeps changing. Life is like that too. We have terrible things happen to us, illness, bereavement, job loss, family break up, all sorts of things cause us pain and heartache. That darkness feels like it will never end; but it is like the storms we keep going through, the sun comes back.

There is hope and a future.

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Crash, Bang, Wallop

I’m sure you’ve all seen ‘Half a sixpence’ and if you haven’t, will now be rushing off to look it up. “Crash, bang, wallop, what a picture, what a photograph,” is a line from one of the songs in it. Which has absolutely nothing to do with building work. Although, they do have a house built; well beginning to be built.

What am I talking about? I have spent the last two weeks in a room below and beside a lot of building noise. Crashing and banging and walloping. Builders seem to find it easier to drop their tools than put them down. To throw things rather than place things. They are hard of hearing and need radios blaring. For some reason van engines often need to be left running. They trip over all the stuff they leave lying around and then off course they have the actual building work. Drilling, sawing, banging, angle grinders and general building noise.

We have been having DFG (Disabled Facilities Grant) adaptations done on our house to make it more accessible and generally much better for me. The garage has become a room, mainly to house the through floor lift which will go into the bedroom above; my bedroom. But as a result of being adapted it gives me a room to put my excess stuff into. My bedroom is already one of the smaller ones. By the time you have to leave room for the lift, a hospital bed, two doors (entrance and wet-room), wheelchair, wheeled shower chair, small wardrobe, and bedside table there isn’t room to swing a cat or for the rest of my stuff; if cat swinging isn’t allowed. Where will my collection of teddy bears go? What about my collection of antique sports cars? Then their all my suits of armour and my extensive collection of old phone boxes. I am of course kidding, but I do have more things than just clothes. So those things will be in the room below, it’s on the sunny side of the house; should be a nice place to sit as well, when you visit for coffee. You’ve not had an invite? It’s in the post.

I have already hinted at the other part of the building work; directly above my head. I am currently sleeping in the lounge. That’s a very appropriate name for our front room/sitting room, because I lunge around in my hospital bed. Anyway, something was happening directly above my head; what was it? The ceiling hoist? No, that just sits there until used. Ah yes, the wet-room conversion. They have taken a small en suite from the larger bedroom, swapped its entrance into my bedroom. Then extended it into the larger bedroom, which is now smaller. Are you still with me? I wish I was; I’ve only seen photos so it’s hard to really grasp what it looks like yet. The result is that I will have a large enough wet room for two carers and me; sounds like there ought to be a song there. Apparently due to my condition, care companies in this area will only give me a shower with two carers. No, not because I am so large, that’s just rude of you. It’s because I can suddenly go like a rag doll and even though I have a reclining shower chair with seat belts, its best to be safe. Shower time is therefore going to be crowded. Don’t worry, I know we don’t all have a shower. Not unless I happen to splash them, accidentally; which I would never do. Having said that most of the time it will be Mary giving me a shower, we haven’t got a rule about two carers, Mary knows the signs well enough to see ‘rag doll’ time coming on.

Back to these really quiet builders crashing about above my head. I appreciate what they are doing and I am looking forward to getting upstairs to my bedroom. I’m especially looking forward to the sea views from our balcony room upstairs. I just wish that they had learnt to be a bit more careful with their tools. Is it really necessary to throw a hammer on the floor after use? When I was on my feet and doing houses up, I had a tool belt and a work bench. My tool box was on the work bench and I put, not threw, tools back in that. Tools I was using all the time went on my tool belt. As for tripping over everything, that is just bad practice. The HSE would not be happy; mind you they often look unhappy. An HSE (Health & Safety Executive) Inspector doesn’t smile a lot, but then I guess they have little to smile about. If they came to see what our builders are doing, they might giggle on the inside, but they would have to be stern on the outside. A clean work area is a safe work area, no I have never been an HSE inspector.

Oh, the joy, the deep, deep joy, when 3.30pm comes and the working day ends. Yes, you read the time right; 9am to 3.30pm. I was in the wrong job when I used to work in an office. Anyway, the deep joy at the end of a long working day when the crashing, banging, walloping and general noise ends. The end is now in sight. Friday we are told, most of the work will be finished. Then all we have to wait for is the glass for the windows. Apparently, Brexit, Covid and Suez all worked together to hold that up, very co-ordinated of them all. Then we have to wait on the through floor lift; that was on an 8–12-week delivery from 24th June. The same three well co-ordinated suspects may be holding that up too though.

Crash, bang, wallop, what a picture the finished project will be. Well, it will be once we can get it decorated. The builders leave it with bare plaster walls; apart from the part tiled we-room of course. But once it is all done, it will be amazing.

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I Married A Good’Un

I have had many times to consider that I married a good’un. What a lucky guy I am. I remember all those years ago; obviously not that many years, because I’m only young. Back in the early 1980’s, when I first met Mary. There was this thunderbolt; no that was just in my mind. I never wanted to be apart from her again.

Well, today, a landscape gardener was round looking at putting in a base for the shed and a path for my wheelchair. He looked at what Mary had already done and he was gobsmacked. In fact, he was saying she works harder than most of his staff. He texted me later, this time tongue in cheek, saying can he offer her a job. Looking after me is Mary’s full-time job.

Earlier in the week the builders carrying out the adaptations on our house, to make it suitable for me, made a similar observation. They couldn’t believe all the physical work Mary had already done in the garden.

The point is, that she is amazing at transforming a garden. Laying out a lawn, cutting borders and planning, are things Mary has done in each of our houses. Some, I have been able to contribute to; not this one. So, I watch in wonder at the things she does. All this on top of being my main carer and doing the standard things of cooking and cleaning; none of which I can help with. I most certainly married a good’un.

In case you think my judgement of what makes a wife good or bad is based on physical strength, or cooking and cleaning; let me clarify. Mary is brilliant because she is kind, generous, loving, a woman of God, a great wife and mother. Mary is gentle, understanding, long suffering; that goes without saying having me as a husband. Mary is clever, inventive and strong, both in spirit and mind. Mary knows how to overcome difficulty and she is the one who comes up with all my best ideas. She is my strength and my right hand. I have most certainly married a good’un.

There are many unpaid carers out there and my hat goes off to you all. I also realise that for many of you, the person you care for is unable or unwilling to recognise your help. Sometimes that’s the illness affecting their mind. For some it’s the frustration of wanting to do it themselves, blinding them to gratitude. For others it is just ignorance; they have never thought about it. Their character gets in the way. So, I want to say to all of you who care do unpaid for others: Thank you, you are doing an amazing job. Without the great army of friends and family who sacrifice their lives to care for others, we would not have a life. (I have separately blogged about paid carers.)

I can and do say that to Mary. If you are someone who receives care from a family or friend; stop and think. I realise that you want to do things yourself; of course, you do. But, recognise that the person helping you is giving up a lot to do that. Say thank you, realise that they are putting their life on hold, to help you.

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The New Hoisting Diet

I have discovered an amazing new diet. But, let’s not rush into my world changing revelation. Let me not spoil the moment. I don’t want to jump the gun and get you all placing orders for my miracle diet before I have even told you about it’s wonders.

But where do I even begin? Well, I was a poor lad, born long ago without a penny to my name… too far back? OK, let’s jump on a bit. The winter was harsh and cold, help just wasn’t in sight… still too long ago? You are a hard bunch to please. Straight to the point it is then. Speaking of which… alright, straight to the point.

Have you ever noticed ‘middle aged spread?’ It’s not a type of margarine. It’s when your middle decides that it wants to spread beyond your waste band. I consider that to be a betrayal of trust. After all, you have nurtured that belly all your life. Kept it hidden and tucked up cosy in a belt. You looked after it, never let it down or said anything bad about it. Then one day, without any notice, it just decides to burst out of your trousers and make an embarrassing show of itself to all and sundry. I wouldn’t mind, but it’s so undignified. It doesn’t even respect the outfit you’re wearing, trousers, shorts, PJ’s, skirt (not me of course), kilt (not me either, slacks (if you’re one of my American readers) or joggers. Whatever you are wearing it overspills them like a waterfall of flubber.

This ‘middle aged spread,’ flab to you and I, after all we can speak straight, can’t we? We can be honest with one another? This fat! Well, it just hangs there, wobbling and generally being silly. Not behaving itself at all.
Today an OT (Occupational Therapist) visited. You didn’t know they did diets; well, they don’t. She was here to bring me a new sling for use with my ceiling hoist. A toileting sling; I will leave it to you to decide what that is for. Mind after I had tried it on, she said, “do you want to use the commode?” That’s a mobile toilet by the way. I said, “not with an audience.” Actually, I only thought that, I was just embarrassed, after all there were three people present. I’m not in the habit of using a toilet in public, even a public convenience. Being disabled is embarrassing, but there are limits.

Back to the sling, it has a Velcro strap around the middle, it goes around your ‘middle aged spread.’ The OT had brought two sizes, medium; I know, I laughed too, and large. Hang on, why did you laugh at medium? Well, the large was tight. But the OT said, “don’t worry, they are always tight, until you are hoisted.” We are coming in fast on the point of my blog now. Get your credit card ready to buy this almost unbelievable diet.

As I was hoisted into the air a miracle occurred. My ‘middle aged spread’ disappeared! Will wonders never cease? Something about being hoisted, gravity, physics, bottoms hanging out of slings; even covered bottoms. Whatever the logic, your belly becomes slim. It’s a wonder diet; instant and reliable. We won’t mention it reappearing on being lowered; let’s gloss over that. There are slight down sides to everything.

So, if you are suffering from ‘middle aged spread’ all you need is a sling and a hoist; hey presto, a slim tummy. Simple, eh? They should package it up as ‘The New Hoisting Diet’. Then in small print, “Only effective while in the hoist.” Aren’t you glad that you stuck it out till the end?

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“OK Flipper, show us where he is.” When I was growing up, in the early 2000’s, sorry that just slipped in there, 1970’s, animals on TV were really clever. Lassie, Flipper, Silver, Black Beauty, pretty much any animal could talk to humans either in English or at least be understood. They so loved humans, especially the kids, that they spent all their time playing with them and rescuing them. You’d have thought they would have had better things to do. Leap around in the water, run in a field, chase sheep.

Reality on the streets was often very different, of course. Any animals I spoke to said, “yeah, hang loose man, be cool.” Rather than offering to help. Actually, that’s not true, they never said, “be cool,” I added that bit. In fact, as a child my mates and I formed an animal rescue group. I say we, but I had a bit part. We all had a medical kit on our bicycles and we road around our village looking for wounded animals to rescue. Just as well we never discovered one, as none of us would know what to do with them. We didn’t have any veterinary training. Looking back (I was only about 8 or 9, no wonder I wasn’t a vet) I realise that the founder of this group was not exactly ecologically sound. He had a draw full of blown birds’ eggs!! Oh yes, reality on the streets was different, most kids hurt wild animals rather than played with them.

What got me thinking about Flipper was events of yesterday. No, I wasn’t drowning and a Dolphin rescued me. Nor was my motor boat stolen by thieves and Flipper directed the police after them. Mary was out for a walk on the beach and phoned me. Where does Flipper come in? Be patient; she saw a flock of, is that the word, gathering, group, pod, is it a pod like whales, a pod of dolphins. They were a way out to sea. Mind you they were having a rare old time, leaping and swimming and generally cavorting around; do dolphins cavort? She phoned me to say… I was at home in my hospital bed… to say, look at the cameras in the upstairs bedroom. Well, not look at the cameras you understand, but look at the images of the sea on them. I’m not sure if you have used Wi-Fi HD cameras, but the HD bit is a misnomer. The image of the sea and pier were a bit grainy. By bit I mean, very. So, all I could see was the sea. A very poor image of the same. Mary was describing amazing images of leaping dolphins next to a fishing boat. I have a good imagination; you may have noticed. Which meant that I was able to see Flipper leaping out of the water, over the boat. I heard him clicking and whistling, saw him waving his fins. It was all very exciting; almost unbelievable. Anyone looking at the camera image would have been forgiven for thinking all I could see was a blurry dot where the fishing boat was bobbing on the water.

Fellow Marine Pointers, did you know I lived on an estate called Marine Point? Well I do, fellow MPer’s have seen dolphins much closer; as has Mary. I guess I shall have to wait till Lassie tells me that they are back, leap onto Silver, shout Hi, Ho, and away to the beach to catch Flipper as he performs.

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Getting To Know You

‘Getting to know you…’ Any fans of ‘The King and I’ will be in full voice by now. I of course have not reached, ‘…your cup of tea.’ There is a purpose behind the lyrics of course; Anna was introducing herself… no I mean in this blog. Mary and I have recently moved to Hartlepool; how did you miss that one? Go and sit in the corner. Which means, everything is new. Well, not quite everything. But I have to get used to a new house, new area, new equipment, new doctor, new OT and new carers. I am getting to know them.

Fortunately, I already understand the local dialect. Which reminds me, when we last lived here many years ago, I didn’t understand it. One of our sons went to a new school here and after school, went home with a friend. He rang me to say that he would need collecting later from the friends house. So, I needed an address and directions. You’re a clever lot, so you already know what’s coming. The friends mum took the phone and gave me the address. Well, I couldn’t find it on the map, not the way she said it. I am not going to give their address out here, but there are some ways things are said up here, that take getting used to and her accent confused me. The road name did not sound the way it looked to me on a map, when she spelt it out. A couple of examples of local dialect that I have come to love are: moower (elongate the first part), is a moor, and twoast (say it as one word quickly) is toast. But I am assured by many locals, that they don’t have an accent in Hartlepool. Anyway, our lass was seeying, away with ya hinny, they don’t talk like that, flower.

You do realise I am going to be in trouble now. I probably will upset all my carers. Actually, they are a lovely group and have a wonderful sense of humour. Just as well really; with me as a client.

I was thinking the other day. A very good habit pooh bear. Imagine, walking in to meet me for the first time. After getting over the shear joy of meeting me and the wonderment at my muscular physique and taut svelte body. They then have to deal with my humility. How do they keep from fainting? I’ve known me for years and I can’t stand in my presence; no, wait, I just can’t stand.

Being serious for a moment… that’s long enough. Let’s have another try. It’s always difficult getting to know new people. Both for me and them. Carers are a whole other case. I won’t go into all the reasons now, but if you read my blog “Care, a unique relationship.” You will understand more about why. In brief a care to client relationship is both professional and personal, distant and yet somehow close. It’s hard to quantify, because when someone gets to know you well over time, they can’t help but understand you well. Of course, what makes it unique is that understanding is one sided. In most relationships where you are known intimately, you know the other person just as intimately; not so with care. Carers are like friends and yet not friends, a strangely intimate, yet not intimate, professional, yet close relationship. I don’t know of any comparable relationship. It is not like your doctor or a nurse, not like family or friends.

Here we are again… I’ll resist ending that ‘happy as can be.’ Starting that process over again, getting to know a new set of carers. Eeee, I’ll be off now flower, our lass is bringing me a stottie.

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Confused, you will be

I can be easily confused and moving to a new house may be the straw that broke the camel’s back. Wondering why? Let me explain: The lounge is going to be my temporary bedroom, but will then become a dining room and a music room (well Mary’s piano will be in it.) Our dining room, which is actually a kitchen/diner is going to become our lounge at one end and stay a kitchen at the other. Just as well, I don’t fancy Mary trying to cook food on the sofa or fry an egg on a coffee table, “extra soft-boiled eggs anyone?”. One of the bedrooms is going to be an upstairs sitting room (it has sea views). The garage will become a lift room, and also a computer room (my bedroom will be too small for my computer after the lift access is added). Don’t worry I haven’t returned to the 1960’s with room sized computers, I just mean my PC will be in that room.

Just imagine the confusion all this changing around will cause. The car won’t know where it is, we may well find it in the kitchen one day or sitting on the sofa reading a paper. Herbie rides again, here we come. I might lose Mary completely. Just imagine, Mary might say, “lunch is ready,” I will be sitting in my wheelchair in what was once the dining room, while Mary and my rapidly cooling lunch is somewhere else entirely. Or picture what could happen if a visitor calls around for coffee. Mary says, “take a seat in the lounge”, they glance around, decide on the appropriate room. Mary makes the drinks and starts searching. The drinks could be cold before they are found. Years could pass before we find our visitor covered in cobwebs and dust.

I’m thinking of labelling the house East Wing and West Wing; is that too ostentatious? At least that way we could say, “meet me in the West Wing lounge.” I’m making our house sound far larger and grander than it is. As I said to the butler the other day, “if I write this blog people will think we live in a mansion.” He laughed and said, “just wait till I tell that to the 2nd under maid.” I just wish we could find enough footmen for house. The gardeners are always complaining that 100 acres is too much for them to manage alone. We really have a very ordinary house.

A note for my readers from the US of A. We no longer live in Somerset, so this obviously isn’t true. It’s only true of every Brit who lives in that county, as is shown in every American Movie. The people of the south live in mansions. We now live Up North, and I wear a whippet and take a flat cap for a walk.

Anyway, I must go, the maid wants to set the fire in this room.

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Take Two

There seem to be so many re-runs I’ve decided now is the time to join in. Not because it saves on creativity; that’s why everyone else does it. No, my reason is that most of you have never been in my basement; metaphorically that is. You have not trawled my archives, looked through the back issues, read my history, asked about my past. To be honest I’m a bit hurt; don’t you care about me? But I will forgive you if you read this.

The following series of blogs carry a Government health warning:

Don’t operate heavy machinery while reading them.’

I feel that I must add that warning as one of my carers was reading one of my blogs while walking along the road; she walked into a lamp post. Just imagine what would have happened if she had been operating heavy machinery; it doesn’t bear thinking about. If you are wondering which post she was reading it was: “Not so public convenience.” Actually that blog should carry it’s own warning. In fact I think it does. My blogs are at: just in case you want to see why she walked into a lamp post.

Don’t expect a copy and paste of archived blogs. If you want them as they were, you’d still need to read the unadulterated version. These will be adulterated; that sounds as if I will be doing something illegal! In fact I’m not. These will be the all new, singing and dancing versions with added commentary. After all, I know what happened when I posted them. Hindsight is a wonderful thing, but reading back into events with added commentary is even better.

For example, when I posted about elves in Amazon devices and how Amazon were going to take me to court and prove elves could not get into their Echo devices. It was only afterwards that I can look back at the spirited defence mounted on my behalf. Looking at those generous hearted comments, we can laugh at the folly of one person saying: “I don’t know much about elves.” When I pointed out it was a farce. Or appreciate the tongue in cheek fun of those who continued the serious debate about the rights and wrongs of Amazon suing me over the alleged elf infestation. All matters relating to the legal issues arising must be referred to my solicitors: Ms Ery Guts at May, Hew, Makemoney & Partners, 1 Gold Row, London.

Let me not tell you too much before I give you the first re-run. There are those who wonder at the picture I use of myself on the Website and its tag line “Shall we get dressed now?” What better place to start than at the beginning and don’t worry I will avoid singing any Sound of Music songs as we Start at The Very Beginning, a very good place to start.

My first ever blog was:

“Shall we get in the bath now?”

“OK, shall we get in the bath now.” This was said by one of the two young ladies who were preparing my bath at a nursing home.

In case you’re wondering, and I know you are, nursing homes only have a couple of nurses at most. The rest of the carers are the same as in a standard care home. The two young ladies mentioned above were carers, not nurses. I don’t need two nurses to bath me. Although that does take me back to when I was 28 years old (The full story is in the blog “Ambulance Transport.”) I was in hospital with a severe electrical burn. Only one arm was working. A nurse, yes it was a nurse this time took me into the bathroom for a bath. She said; “shall we get undressed now?” I was too shocked and embarrassed to notice at the time. I just said I could manage fine.

Anyway back to the original blog. These two young ladies are probably tapping their feet by know waiting for an answer, much like you. So let’s hear my reply:

“Is there room for all three of us?” I asked innocently.

Can I just make an aside here. Yes, another one. There have been those who have suggested my comment may not have been innocent. I assure you, it was. After all, she did ask if we could all have a bath. The bath looked too small to me; perhaps I was wrong.

I had noticed over the previous few days that “we” was used by carers a lot. I guess it was to be encouraging or they just hadn’t thought of it. But once I zoned in on it, I realised that carers were asking to join me in the bath, in the shower and even in bed “shall we get into bed now?”.

Now you are just adding your own interpretations here. They only wanted to get into bed with me.

They were wanting to eat my food, wear my clothes, although I think my clothes may have been a little baggy on them, get into the sling before me and even sit in my wheelchair! “Shall we get into the wheelchair?” I suggested they might be heavy on my knee. There were a couple of them looked light enough.

When I got home from the nursing home, I was so focused on it I noticed my carers at home similarly wanted to eat my lunch “shall we eat now?” This seemed a little mean, I only have small portions; yes I’m big boned. Of course, once I pointed it out, they started to catch themselves saying ‘we’. 

The one that inspired the name of my site is, “shall we get dressed now?” Is probably the most common and one I have to bite my tongue not to respond to the most. Having pointed it out, one of my regular carers has become so aware of this that she will occasionally joke “We! Are going to get dressed now.” Waiting for my eyebrows to raise and then we both have a good laugh.

I had never noticed she was undressed either.

Then again it can be two ways. I’ve become much more aware of saying to Mary on her return, “We’ve tidied up.” Taking credit for the carers work. 

Language is such a funny thing; we say things without meaning to and of course it’s so easy to distort meaning. But it’s also important to be aware of what we are saying and why.

Since I wrote this blog it has had the biggest effect of all my blogs. It has been read world-wide and by a lot of people in the caring professions. I’m not boasting; just telling you how wonderful I am. Oh I see, I am boasting. A tutor at a teaching college in the USA contacted me after reading it and asked if I would mind her making some of my blog’s part of their course reading material; it’s a course teaching about Continuing Health Care. Of course, I said no, how dare you use my material for such a worthy purpose. OK, so I was honoured as this was the reason, I started writing the blog. I’m still waiting to be flown out first class as a visiting speaker. If you are reading this, I’m ready to go, bags are packed.

If you have carers or you are a carer, take note of that ‘We’ it is still used so much. I do realise why it’s used. The idea is to help people feel comfortable and included; it’s meant to be friendly. But I think you’ll agree that it sounds far too inclusive and far too friendly. Anyway shall ‘we’ finish this blog now?

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I have noticed in films and series, an increasing number of disabled actors. Particularly wheelchair users. The trouble is, I have noticed something else, and as a full-time wheelchair user I feel I can say this, a number of them are very poor actors. It leads me to the conclusion that they are there to represent me; by me I mean disability generally. That is a big problem to me. As it is not working as it should.


I’ll give you a concrete example, the detective series Vera. It has a lady in a wheelchair, working in the office. She is the most wooden actor in the series. I cannot imagine they would have cast her in Vera unless she filled a need for a disabled actor. I can say that by comparing the calibre of the other actors they choose. I wouldn’t mind if she was a great ambassador for disabled people. But she always looks so dour and miserable. She doesn’t engage me, she’s not someone who you connect with. I am not blaming her; not everyone is a brilliant actor or good at connecting with people. She is just one of many average actors. She just happens to be disabled. That’s the problem, she is filling a role which I feel she is unsuitable for.


I am totally behind the idea of positive discrimination, where there is a lack of representation of any kind; gender, racial or disability. I understand that film makers will not want the hassle of employing disabled actors without a push. Adapting sets and facilities is costly and difficult; I know they require that push. What I am saying is that they need a better choice of actors. I can only assume this is where the problem lies.


What is needed is for a lot of disabled people to start training as actors. Ones with an aptitude for the vocation. Out of the way I’m coming through. No, I will spare you my thespian skills; or lack thereof. Acting it is like every other area in life, if the directors and producers have limited choice they will end up with a limited outcome.


I do want to be represented in films and television. That is a good thing, it’s great that the media is trying harder to represent people more equally from all areas of life. What you notice is that there are great actors from all walks of life, racial backgrounds and genders, but we have a long way to go in finding great disabled actors. There are a few; but too few.


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The Hero Inside

We were listening to Mariah Carey’s song, ‘The hero lies in you.’ It has some powerful words that I am sure resonate with many people. Words like, ‘So when you feel like hope is gone, look inside you and be strong.’ It’s a song about love lost of course. But it has wider appeal and meaning to many. Mainly because it suggests that we all have an inner strength, what is referred to as ‘a hero inside our hearts.’ That’s not a line from the song, but a combination.

What is a hero? We use that word a lot and it has resonance for us. It moves us in this song. What does it mean in this song and generally? Hero can be a character in a piece of fiction who does great feats and is admired, the lead character. Hero can mean a person in life who we admire and who achieves great things, who overcomes obstacles, who does something great. Generally, the hero rides in to the rescue when things go wrong. They are the character in fiction and in real live that we credit with rescuing a person or situation.

These days, in this post-modern world we are much more likely to look at anti-heroes than heroes. The very concept of heroes has become passé and unpopular. Humans are a fickle lot, a fact that has been pressed home on me by watching the first series of Masterchef Goes Large. It’s not just that Greg Wallace and John Torode look so young in 2005, but it’s their comments. The idea that it is not desirable to mix the food of different nations. A concept that is lauded in the latest series. The complaints at food being presented in to fancy a manner, or veg being too crunchy. These are all food fashions that have changed. There is an old song called ‘Putting on the style.’ It so captures the idea that each generation just puts on a new style/fashion. It’s so serious to them, but as you get older and see the many ‘re-runs’ it becomes absurd.

Back to being our own hero. In our lives the song writers, including Mariah are suggesting that we can be the hero. Is that true? That’s an interesting question. Can we save ourselves? Be our own hero. There’s an American TV series called ‘Heroes’ it’s about a group of people who ‘evolve’ super powers. So, these ‘heroes’ are super-heroes. In a way that is what a lot of us think when we consider the idea of ‘hero’ we almost unconsciously add ‘super’ to it. Marvel comics have produced a whole series of comics and the follow-on films about ‘heroes’ some of whom do not have ‘super’ powers. Their ‘super’ powers are the weapons or armour they use. Characters like Iron Man and Falcon fit that bill. You probably think I am a huge comic book geek now? Actually, I don’t read comics at all. But I do occasionally watch films about comic book characters. They are escapist fun.

Where was I? Being our own hero. Can we be our own hero, save ourselves? At last, I am going to give my answer to that. Take it or leave it, weigh it for yourself. I don’t believe we can save ourselves. Which is not the same as saying that we should give up. I believe that we should be strong and try hard in our lives. I believe we should not give up. But I also believe that there are points in our lives when we need help. Things are just beyond us. We cry out in desperation. There is an answer. That answer comes not from within us, but from Jesus. I know, you want to stop reading now. Mike is banging on about Jesus again. Being all religious and talking twaddle. Actually, I am not being religious at all. I am the least religious person you are ever likely to come across. I do not blindly follow any rules. I don’t believe in a set of instructions that lead to salvation. I don’t worship a holy book. I do not advocate a man created ideology or religiosity. I have no time for the concept of working you way to heaven, or say that only good people can meet God. I dispute the idea that church is full of people who have got it together. I certainly do not put on a smile and say, ‘everything is wonderful because I know God.’ No, I am a real human being. I know about God, because I have a relationship with him through Jesus. My ‘faith’ is a real faith based on a real person.

There is nothing special about me, other than what God has done. I am totally unable to save myself. But God can do anything. I do not follow a set of instructions; I follow a loving God. I don’t worship a holy book. I read a book of life; The Bible, God’s Word. I don’t claim that I have my life perfect and together. I fail, I fall over, I get in a mess. God loves me in that mess. Helps me through it and pulls me out of it. When I go to a church meeting it is full of people just like me. Imperfect, weak, real and needing God. It is from that point that I am saying there is an answer. Jesus is the answer; because I have experienced it. Jesus is not a swear word, or a concept, or an irrelevancy. Jesus is a person we can know and be known by. More than that, Jesus is God’s son who came to earth so that we could know God and have hope and a future.

When I say we cannot save ourselves, it’s because we need God’s help. When we search for a hero inside ourselves; what we find is Jesus waiting to meet us and help us. You can choose to be self-sufficient and do it all alone, but ultimately you will then find you are too weak. We humans are full of bravado, singing loudly about how great we are. Inside we know the truth. Frightened, weak and lonely. We need each other, friends and family, but most of all we need God. Jesus will help us get to know him. Or you can decide to try and go it alone.

I have often suggested as a free, non-pressured way to ask questions about Christianity and I do so again.

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Dr Livingstone, I Presume?

You’ve all heard the famous line, “Dr Livingstone, I presume?” I’m probably quoting it wrong. I could check on Google, but who’s to say that’s right. I presume it would be; but I don’t know with certainty. On balance it probably is.

I have had reason to contemplate presumption a lot the last few months. We all do it, we presume things and we also assume things. They have similar but subtly different meanings.

Presume means: “Suppose something is the case on the basis of probability.”

Assume means: “Suppose something to be the case without proof.”

There is some reason behind our presumptions, we are basing it on probability; of course, we can still be wrong. Whereas assumptions have absolutely no evidence to back them up. That’s why it has the easy to remember mnemonic “Assumption makes an ass of you and me.”

This blog is about presumption. Because even though there is often reason to come to the conclusion we do; we are so often wrong. Think of all the detective stories you’ve ever read or seen as a film. All those ‘red herrings’, things are not always as they seem. We can have a lot of facts and evidence and still draw the wrong conclusion. Our presumption can still be wrong.

I used to be a professional photographer, many years ago. Not quite when there were glass plates and exploding powder for flashes, but not long after. I am still keen on photography; I just can’t easily do it. I understand the principles. One of which is the compression of distance that happens with a long lens. In other words, if you use a lens that is designed to make a distant object appear closer it also squashes together all the different distances, things that are close, middle and far off. The effect is as if an object near you is closer to a far-off object than it really is. This effect can be deliberately used in movies for a thriller effect. In a car chase the car behind can seem to be closer than it really is. It can also be used in portrait photos. If you have ever wondered why, you don’t look your best on a phone camera, it’s because they have wide angle lenses. The longer the lens (a lens designed to take far off images) the better you will look. That’s because it softens facial features. Flattens out the angles of our faces. Some new phone cameras have long lenses as an alternative, try using it. You may find that you no longer have to use Fairy Ears, an overlay of stars or the beatify setting. You could even have a photo of you as your profile pic rather than an avatar. Of course I’m presuming you’d prefer that, or am I assuming?

I have gone right off topic, no surprise there. The point I wanted to make was that presumption can get us into trouble. We have some facts, weigh them up and come up with a conclusion. But it can be wrong. It’s not until we are talking to someone who knows the truth that our presumption is shown to be wrong. Now this might only be me, but I find it hard to let go of a pet theory. Which means if I have come up with an idea based on the facts I knew, I am not ready to let go of it. It’s probably why a lot of arguments start. After all who wants to back down? We are often more ready to believe the conclusions we have drawn; even if based on our faulty presumptions, rather than change them.

You don’t have to think very far to come up with examples of what I am talking about. Covid, Brexit, vaccination, race, employment, disability, politics, media, etc.

My conclusion is this. Sometimes it is better to look silly and admit you have got it wrong rather than continue with a faulty presumption. After all for a presumption to be truth, it needs to be more than a series of probabilities. It needs factual evidence and testing.

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A Little Goes A Long Way

I was taking a tablet today. It was tiny, I thought, how can something so tiny make such a huge difference to how I feel. It was a Zolmitriptan, anti-migraine tablet. I take daily preventers but they are becoming less effective and I seem to need Zomig (trade name) tablets more often.

It got me thinking about size. A pinch of salt makes food taste delicious. Too much and it is vile. Certain things in small doses are medicinal, but in larger doses are poisonous.

Have you ever thought about gossip? I don’t mean talking about situations to other people. What I am talking about is when one person says to another something like:

‘A lot of people have told me that you are causing trouble.’


‘Two or three people say you have been saying…’

But they won’t say who. Or even be very specific about the ‘trouble.’

You see tackling something like that is like fighting smoke. How can you counter that? What can you say to a disembodied ‘somebody’ or unspecified ‘trouble.’

I have been in a situation like that. Two people who should have known better sat down with me and took turns launching at me with sentences like the above. I reasonably asked, ‘who are they and can I speak to them to find out what I can do to put it right.’ The answer I got was, ‘they feel too awkward about it.’

Not too awkward to complain to someone else. Not too awkward to gossip about me behind my back. Then these two men did not feel too awkward to challenge me about an issue I could do nothing about, raised by people they would not tell me about.

Why is that so bad? Because if you want to accuse someone of something, do it to it their face. Or at least sit down with a non biased third party and discuss it with them. I am not talking here of violence or sexual assaults. Obviously in those cases the victims need protecting from their attackers.

The issue here in my case, as I later found out, was that these people didn’t like me. It was a personality clash. We cannot get on with everyone. They found my style difficult, my personality. I know, I thought I was wonderful too. It was at a job I had some years ago and the people making accusations against me did so to my bosses. To my face they acted as if there was no problem.

In the situation I have described I found that it ruined my ability to continue in that job. I didn’t know who it was who had a problem with me. I could not work for bosses who dealt with issues that way. I left that job even though I was having great success at it. Gossip ruins relationship because it destroys trust. The job of a manager is to make sure people can work together and do a good job. Not encourage and stir up gossip. These managers told me that they encouraged their workers to complain to them about others. Unbelievable, but true.

The tongue is small, but can be very destructive. In the Bible James says that very thing. He equates it to a spark causing a forest fire.

Why talk of this now? Because I am aware that social media is rife with destructive comments about people. Anonymity somehow enables people to be much harsher and meaner than they would ever be in real life. Their comments are so destructive. The odd small word here and there, left as a comment or posted as a feed will have such a powerful effect on the people it is aimed at. The recipient has no recourse to sit down and chat it through with their accuser. It is gossip, destructive and harmful.

Words are able to build up or tear down. I encourage us all at this difficult time to choose our words carefully. Build each other up. Encourage, care for, show gentleness, understanding and love in what we all say. Words can be good and helpful, let’s make sure we use ours well.

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House Selling With A Disability

It’s never easy to sell a house and Covid is not making things any simpler. But add into the mix a disability and then things start to get difficult.

I have written this blog to open the eyes of agents and buyers to the extra complexity disabled sellers and their families face.

You phone up most sellers and say, ‘I have a potential buyer, they’d like to view your property.’ The scene on the other end of the phone is much like a swan in the water. Calm on top and manic paddling underneath. ‘Yes that’s fine, says the home owner.’ The moment they hang up all hell breaks lose. Families are sent into a blind panic. Mums and dads start throwing toys back into boxes, hopefully not still attached to the child. People run up and down stairs presuming that the shear movement and speed will tidy the house by sheer momentum. Vacuum cleaners are rediscovered and put to use.

‘I thought Dyson’s were meant to be easy to empty, love?’

‘They are. Just press that button.’

‘This one?’

‘Over the bin!…. I hope your going to clean it up?’

Newspapers, pots, pans, half finished meals, school work, clothes (clean and dirty), phones, toys and everything else you can imagine or not, is thrown, stuffed or crammed into every possible empty space. Many things never to be re-discovered until years later.

‘Was that work project important dear? I just found it in granny’s old trunk in the attic.’

‘I never liked working for that company anyway.’

We have probably all experienced scenes like these, if we have ever sold a house. These situations are nothing compared to the extra delights that come with disability.

Does a potential buyer want to see urine pots and commodes, conveens and creams? These things are really best hidden.

What about the person happily sitting in a hospital type bed? The fact that 95% of their time is spent there is no excuse. I know that four people topping and tailing in a bed looks very funny in ‘Charlie and The Chocolate Factory,’ But it’s less amusing to see one person in a hospital type bed when you are trying to view a room.

‘Don’t mind me. Pretend I’m not here. Sorry about the smell by the way.’

Besides in these times of Social Distancing, only 2 or 3 people are allowed in a house at a time. Out, out you go, into the cold and wet. Get dressed and ready then, hoist, slide, heave, whatever your method get into that wheelchair, wrap up warm and out you go. Then wheel around the block, around the park, hopefully not around the bend.

You see being disabled adds a complication. You cannot just pop out when a viewing is due. These things need planning. Everything to do with being disabled is slower, more complex, more involved. For many of us we need help doing it. For a lot of us that help comes from our partners. The same partners who have to get tidied up for a viewing. The same partners already rushing around.

I say these things not to guilt trip people but to help in understanding. If you have disabled clients or if you are viewing a home owned by someone disabled. Or a home with a disabled person in it. Give some leeway, understand things are more complex and harder work. Be understanding and allow more time. We still need to buy and sell our homes, but we need help and understanding in that process.

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Six Degrees of freedom

How free are you? I have spoken before about VR (virtual reality) one of the concepts in VR is 6 degrees of freedom (6DoF is the abbreviation) it refers to the controls used to operate your movement within the virtual world: up and down, side to side, forward and backward, a total of six; hence six degrees of freedom. Are you all asleep yet? Well wake up!

I was thinking about this the other day. What I love about VR is that freedom of movement which I lack in the real world. I can zip forward and back, side to side and even up and down many feet; that’s something beyond most people’s jumping ability. What is missing in these six degrees of freedom is the ability to teleport. Any fans of Star Trek, I know that’s everyone, will have always wanted to teleport. To be able to press a button and transport from one place to another in an instant; the stuff of sci-fi and fantasy. Well in the VR world you can do just that. There is an App called Wander which is basically Google Earth on steroids, in it you can just appear anywhere on Earth in an instant. It’s like beaming in from outer space. Then you can even time travel; if Google Earth covered the place you visit at different times. You can view it at that time.

In the VR world you have a home. Not very earth shattering I know. Most people have a home anyway. But the VR home is massive. My home is far too small for my wheelchair, I am always bashing into things, scratching doors etc. Apart from the fact that I am not in a wheelchair in the VR world, the house itself is gigantic. Not that it is a problem getting around it; you just teleport from place to place. No wheeling or walking needed.

An aside; when you play some games in VR, Star Trek for instance, you become a character in that game. You look down at yourself in the game and see who you are. In the loading part of the Star Trek game, as the shuttle is flying towards the main ship, you look down and find you are wearing a short skirt. But that’s OK because you are a woman, what am I saying! It is very strange in VR sometimes. Anyway, back home before we all need therapy. In your virtual home you can choose what it looks like and where it is; space, another planet, the past, a mountaintop hideaway (if you’ve always wanted to be a Bond villain) etc. You can even decorate it. Although that’s where the 6DoF gets a bit tricky. One of the features of 6DoF controllers is that they enable you to have virtual hands in the VR world. I think that practice must make perfect, because I have yet to master picking things up and moving them around. I can do it with my real hands; just.

I started by asking how free are you? That was a question that has a serious answer, even though I have gone off on silly asides. Freedom can be the physical limitations of our bodies, the limitations of our finances, our mental wellbeing, the social situation we are in and even the very buildings and infrastructure around us (something very much in the news with the push for more accessible housing).

Freedom is not a simple concept. We perhaps think of it in relation to our gender, social background, disability, race, finances and surroundings. But we forget that it is also a state of mind. Do not misunderstand me, I agree that the main limitations are very much social background, race, disability and gender. Although each of these will cause debate as to there degree of limitation or even if they should be included and some might want to include other things.

What I am saying is that on top of these limitations, our attitude and outlook affect our perception of freedom. You could have every advantage going and yet not be free if you have a closed in viewpoint. There have been those in history who have been imprisoned, oppressed and persecuted and yet they have found inner freedom.

I do not advocate that there should be no change to society to make things better for the oppressed and marginalised. Anyone who reads my blogs will know I champion change. What I am suggesting is that while we await that change, we can still find a degree of freedom with our limitations; maybe not six degrees of freedom, but some relief and freedom. Change can be slow, but we need not spend that time focussed only on how limited we are, we can look to a wider vista and see freedom within our limitations whatever they are for you.

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In anothers shoes

There is an old expression about walking in another person’s shoes. It is meant to get us thinking about what another person’s life is like. Well, I was thinking today about that, or to put it another way, empathy. I can gain a fair bit of understanding about another person’s situation. It’s very possible to care passionately about the plight of others and put lots of energy into helping them. But I was wondering if we can truly understand another person’s situation? Can we really walk in their shoes metaphorically, obviously some of us can’t ‘walk’ at all.

What got me down this line was thinking about all those who are doing great things for disabled people. Let me make an aside here, I freely use the word ‘disabled’ because I am ‘disabled’ from doing the things I once could do. I am not ‘differently able’ I have new limitations that did not exist before and it is a nonsense to try and hide that through inclusive language. I do not accept my ‘disability’ as part of me; it is a nuisance and I do everything I can to work around it. The world makes that extremely hard. Now back to my point. The many people doing things for disabled people. Many of them are doing it because they have disabled children, parents or partners. It got me thinking about perspectives. The perspective of a person trying to understand the situation of another.

Due to the nature of my condition, I occasionally lose the use of my arms for a period of time. So, I can get a glimpse into what it’s like to have no use of your arms. But I would not claim to truly understand what that feels like to have no use of my arms because I get it back; that may change in the future. Therefore, I can get a flavour of what it’s like but not fully live the experience. That is an important distinction. It is possible for any able-bodied person to try out a wheelchair to see how that feels, put a blindfold on to see what blindness is like, wear headphones to get a feeling of deafness, put on gloves to mimic loss of feeling, but none of these things give the participant a true experience of the condition they mimic because they end unlike the condition they are mimicking. They are a choice that is for a limited time. Choice being the key word, it can end at will.

I remember in the 1980’s a cabinet minister made a big fanfare of living in a flat on Income Support for a week. What a rubbish experiment! Most people could starve for a week if needed so to say that he could live on limited income for a week was a ridiculous idea. Most people can cope with any limitation when they know an end is in sight. Of course, in the situation I mention the cabinet minister didn’t have to buy cleaning products, gifts, holidays, clothes, heating etc. Nor did he have a family to feed.

Illness and disability are conditions which lack choice, they are relentlessness. They wear away at you day after day. It is not possible to really get inside that without experiencing it directly. So that even the most good hearted and noble minded able bodied person cannot truly understand what that is like just observing from outside. What they do fully understand is the effect of illness and disability has on their lives. The limitations it causes on daily life. The extra work caring for someone. The financial constraints. The changes to plans. The change of personality they see in their loved ones. All these things are clear to them; but they are outward consequences of the illness or disability. Only a disabled person can know what it is to be disabled; what it feels like. Because words never fully express feelings. The change within a person is just that; an internal change.

Let me draw together what I am saying. It is wonderful that so many able-bodied people want to speak on behalf of the disabled; do not stop. But we can also speak for ourselves. Quite a lot of us are very good at communicating ideas. My feeling is that when the government or a housing association or the media or a specialist disability organisation is seeking to canvas the way forward on accessibility, perhaps ‘The Horse’s Mouth’ may be a good starting point. Why is it that so much accessible planning, design and media exclude the very people it is aimed at? Surely, we should be involved. Shouldn’t the main people on an accessible planning committee be disabled? How about members of every other type of disability planning organisation? Why are we not the first people asked to comment on the lack of accessible housing? We have a voice and brains. It seems utterly absurd that this has not been pointed out before. I do realise that there are one or two who seem to speak for us all; but most of the voices we hear are the able-bodied members of associations, political parties, the media and companies speaking on our behalf. Yes, many have an experience of someone with disability, but they lack first-hand experience. Can we please be heard.

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All Dressed Up With Nowhere To Go

On Thursday 12th Nov I was sitting in my bedroom watching my PC screen avidly. My top half was smartly dressed. The webcam could only see my top half, for all my fellow Zoom participants knew I could have forgotten my trousers; I hadn’t.

It could all have been so different if it wasn’t for this pesky virus. The Zoom meeting, I was attending; do you attend a Zoom meeting or just watch it? Anyway, the Zoom meeting was replacing a very auspicious affair at The Palace of Westminster. Habinteg’s 50th birthday celebration. Obviously they couldn’t celebrate their birthday without my presence. Well actually for anyone who has read my previous blogs you will know that I was there because I was a finalist of the 2020 essay writing competition. I could have been at a very swanky meeting, instead I was sitting in my bedroom. Still, it saved me having to excuse what I was wearing. Do you think they would have let me in wearing a T shirt? Or my PJ’s?

There I was sitting, as I may have already mentioned, expectant, almost with bated breath. I had a while to wait till the winner of the competition was announced. There were speeches by staff of Habinteg, honorary guests, a comedian and even a group of lockdown angels. Then came the moment we had all been waiting for; I like to think the main focus of the event. Who had won the essay writing contest? It was introduced by Lord Borwick of Hawshead, neither had I. He rather gave the game away about whether I had won, being one of the judging panel he had obviously discussed at length the winner and runners up. So, when he listed the seven finalists and came to my name, he said Mike umm…. Nevin; I knew then I had not won. Then Baroness Thomas of Winchester, had the job of opening the envelope. I was no longer on the edge of my wheelchair seat; just as well because I could have fallen out. Three architects won first prize and runners up. I think I may have been the only non-architect in the finals.

There goes the money I thought and the fame and fortune. Actually, I was disappointed, but not surprised when I realised that I was up against architects. What hope had I? I wrote about the socio-political big picture view of accessible housing; oooo, listen at me. They wrote about and even did drawings of practical detail ideas. If that was the requirement, I had no chance. It’s as if we were entering two different contests. I know who I would have chosen to win; just saying.

After the event was over, sitting in my wheelchair in my bedroom, Mary at my side I was contemplative. We live in a very inaccessible house. The bedroom where I was sitting is so small, I can barely rotate my wheelchair. The doorways scrape the wheelchair sides. Only one room in our house can have a ceiling hoist, not the two rooms that really need them. The way outside from my bedroom involves navigating a tight door then a very complex route down a ramp that is at an angle, then through another tight door, 90 degrees left, though another tight door and out the front door via a portable metal ramp (Mary puts down) to a concrete ramp. Then down a very uneven alleyway that floods when it rains.

Accessible housing, the subject of the essay, is very close to my heart. I live with lack of easy access every day. It makes my life harder than it needs be. It wears me down. It affects the quality of my life and the freedom I have or rather don’t have. But I do not just moan, anyone who reads my blogs will know that. I am a positive and upbeat person. Anyone who meets me comments on my smile and how positive and well I look. I don’t believe in being miserable. It is hard to be happy, because happiness is related to what ‘happens’ to you, hence happiness. But I can be at peace even joyous. I can be upbeat and full of fun. I have a good sense of humour and I’m quirky. So, I hope and pray for an accessible house to be available for us soon. We do look and try to find one. They are just not very readily available.

Back to where I began, all dressed up; well, half anyway. But nowhere to go. No Palace of Westminster, no winners podium, no accessible house… yet, and nothing to do but contemplate the event.

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Care For All

We have come to see care as a professional provision rather than a natural act that flows out of our humanity. Caring is a human emotional response to the needs of others and it makes us feel better when we do it. One thing that we have seen very clearly in this current crisis is how much people have cared for each other. That natural desire we all have to look out for our neighbours has come out very clearly. We have spontaneously acted in caring communities.

Community is something that sounds old fashion and twee, but it is the heart of who we are as human beings. Society today has fractured; we have isolated ourselves into cliques and solitary units. Yet it is this resulting separation that causes a lack of community and a lack of mutual support. People are left alone and in need, so that help has to be bought in even for the simple things like company and shopping.

We are at a time when the care bill in this country is crippling to our economy. Yet much of that care is not nursing or professional level care. Instead, there is a tremendous amount of sitting service, monitoring, checking on the elderly and infirm, shopping for those who are unable to do so themselves. Is it just me or are these things really only the purview of professional care services? When did our society become so fractured that neighbours no longer notice if someone is in need? When did we stop helping each other? When did asking a neighbour if they need anything stop being acceptable?

I am not suggesting that neighbours supply a nursing level of care, nor that they offer a washing and dressing service. That would certainly bring a new meaning to getting to know the neighbours. Instead, I am suggesting a return to that sense of community that we have lost. But which we obviously still desire. Look at the spontaneous voluntary groups that have sprung up around the country during this crisis. Look at the way people have helped and supported each other and found fulfilment in that opportunity. There is a very clear desire to help. A sense of community is obviously still there.

In the recent Habinteg Essay writing competition I put forward a plan for accessible housing into the next 50 years. I suggested that we need to focus on re-building community in our future housing projects. But we can also build community in our existing housing. Community is built by our attitude as well as the surroundings we live in. It can be improved by better layout and provision of housing and community venues, but it can also be realised through the way we look to the needs of others.

I would like to suggest that we continue in the way we have started. Where voluntary groups have formed to support neighbours during the crisis; keep them going in a new form. Where we have started to look to and communicate with our neighbours rather than focus inward; keep that outward focus. Care is not just a professional job supplied to those in need; care is for all and we can all care for others. I am not suggesting that we replace true professional care needs; just the everyday helps that we always used to offer to friends and neighbours.

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