Enabled by your Environment

What a positive world we live in. Apparently I am not disabled, I am differently abled. I guess being negative is seen as… well… negative. One day, Bam! I was hit in the face. Not literally you understand. I have not been attacked by people who disagree with my blogs. Although that might well start after this. Then, Wham! Not the 80’s pop duo. You see I had an epiphany and it’s not even Christmas.

My wham, bam, epiphany came last year actually. Don’t accuse me of rushing of a blog every time I have an idea. It was when we moved to our new house last summer. I would say our beach view house, but I don’t want to make you jealous. Too late, I said it. I realised, We can be, enabled by our environment. Let me explain:

We moved in to this new build house. Now I need to pause a moment. This house is M4, no it’s not in the middle of a motorway. The M4 category of housing is an accessible housing category. It means that a house is built to be wheelchair visitable. That means exactly what it sounds like. You are meant to be able to visit it in a wheelchair. The government have a strategy to make all new houses M4… eventually.

An aside here, I cannot visit the majority of my family and friends. I can think of one house that might (I haven’t yet tried) be accessible to me; in part. You might be unmoved by that. But imagine being unable to visit your family and friends. Got that in your mind? Would you find that hard? I know I do.

Having moved into this house with its wide doorways and corridors I noticed something. I could access the whole downstairs. Wow! You’re thinking, access all of downstairs. What’s novel about that. Sometimes I think everyone should spend a year in a wheelchair. The world would change pretty quickly. I imagine blind people may wish everyone could experience blindness for a year. Or deaf people may wish people may wish people could experience profound deafness for a year. I say a year, because a few hours don’t give you any idea of a disability. Many carers have sat in a wheelchair to see what it feels like. People have put on blindfolds or blocked of their ears. But such very short term trials, give no idea as to the long term implications of a disability. I have only mentioned three obvious disabilities. I am not suggesting that other disabilities are lesser.

Back to my sudden realisation. We can be, enabled by our environment. In a wheelchair, even a 1” bump is significant. When you walk you just step over every bump and step, without even seeing it. I have lost count of the places I have phoned to ask about accessibility, to be told they are wheelchair accessible. On arrival, they have steps, steep slopes, gravel or narrow doorways.

We can be, enabled by our environment. When we moved to this house I wheeled around freely for the first time ever. Then after the Disabled Facilities Grant, added a through floor lift, I wheeled around upstairs. I can now access every part of this house. It has been years since I could say that about a house.

But access alone is not the point. Access is only a means to an end. Access is reaching a place or thing. Getting somewhere.  There are still ‘things’ I cannot reach. High cupboard, light fittings, high shelves.

The realisation that I came to was that being able to reach things, get to places, approach a location, enter a room, changes my outlook and gives me opportunities. I did not gain health or strength when we moved here. But, with the same limited strength I already had, I could do more. I gained opportunities. I was enabled by my environment. Rather than make this a very long blog, I will talk of the details of that another blog.

I have deliberately talked of being enabled by my environment. It is the positive side of the better known expression, ‘disabled by your environment.’ We can be, enabled by our environment. All it takes is the political will for housing and buildings to be made more suitable. It is life transforming.

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Smiling Under Pressure

A Tribute to The Women & Men of the NHS

In January I was taken by ambulance to A&E at North Tees. This is my tribute to every woman and man I dealt with that day; it was a long day.

I had to call 999. But this isn’t about the reason for my 999 call, (I am back home and much better).

This blog is about the response and the people my wife and I met.

From the moment we pressed my emergency call button and the operator dialled 999, the whole amazing UK system kicked into action. We are far too quick to criticise and too slow to compliment. Mary and I have reason to highlight problems, but I would rather focus on what was great yesterday and with the NHS generally.

The lady who called us from the 999 operator was quick to assess the situation and send a paramedic, who arrived fast. He was a lovely man, unruffled, calm, and professional. His easy calming nature took the stress Mary and I felt down a notch.

The ambulance crew who were to take me to North Tees were just as lovely. Two ladies with a sunny disposition and helpful attitude. I have a repeated loss of muscle function, which is a rare condition. This means that I have often been left in difficult and painful positions. I must have Mary or a carer who knows about me, with me. In these Covid times, hospitals do not allow you to be accompanied unless essential. The ambulance crew assessed the need and agreed to help Mary demonstrate that need at the hospital, which they did, and Mary was allowed to stay.

On route in the ambulance, I lost muscle function, and the ambulance crew member in the back prevented my head rolling around the whole way. Even though it meant she had to travel sitting in an awkward position, she put me first. I find such things really move me, as being totally helpless in one of these ‘attacks’ I feel vulnerable and easily hurt. Mary was able to guide her from the seat next to me as to how to support my head.

At the hospital we had the most wonderful doctor, whose name meant peace, and who was a source of peace and help to us. The nurses managed to smile, laugh and be helpful, even though they were rushed off their feet. The A&E was so full they had to double up some areas. But we never felt a burden.

I do not know how they kept their sunny, bright smiling outlook during difficulties, stress, and problems. Being there for nine hours we got to hear and see a lot of changes and two different lots of staff. My admiration just grew. Our NHS is one of the most incredible, and I think often unappreciated things we have. The staff are battling on day after day, for massively long shifts. One we chatted to works 7-7. That is not a simple job, but a full on difficult, mentally, and physically taxing job.

The NHS staff are often the ones who suffer abuse from people who must wait. But it is not their fault that the NHS is underfunded. They do not choose how many staff to put on, nor the positions hospitals are built in. Nor which ones to close. It is not up to them how many ambulances there are, nor the way things are run. Yet day after day they smile and laugh and carry on. Surrounded by the dangers of Covid, the sadness of death, the anger of people let down by things outside their control. They carry on and do the most amazing thing. They are there for us. Not just at times of emergency, but in long term illness, for those illnesses that people don’t even want to talk about. They are there.

I want to say a thank you to North Tees Hospital A&E. To the local Ambulance Service and to the NHS. Thank You. You are awesome. You are appreciated. I don’t say it often enough, but I do say it often. The NHS is a brilliant organisation, staffed by wonderful people.

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Going Up In The World

“It needs to be 120cm from the mattress,” a pause, “oh, it’s not.” Listening to the OT saying this under to the bed technicians, while checking the health and safety requirements, I held my breath. Surely, after all these months, I wasn’t about to fall at the last hurdle. The bed technicians who had moved the bed upstairs had a discussion with her about some adjustments. The changes were made. More measuring. I should just mention here that they were checking and changing my bed sides, cot sides as they are commonly called. They are there so that I don’t fall out of bed when I lose muscle function without much warning. They were added after I first fell out of bed due to a loss of muscle function. Part of my condition.

Back to the OT and bed technicians who are standing, hands on hips, tapping their feet, waiting for me to finish the explanation to you all. “OK guys, you carry on.” After all their adjustments the OT had re-measured and pronounced that the bed was safe. Phew! I would not be rolling out of bed, or getting caught under the bars. This last, a less likely scenario as the cot sides are covered in a mesh and foam. But, I could give it a go if they wanted.

Now I have made an assumption. Which I am told is a very bad thing to do. Such a pity that doesn’t stop most people doing it; most of the time. My assumption was that you have been following my life story, hanging on my every trial and tribulation. Basically treating me like the celebrity that I obviously should be; an oversight that will be corrected soon, I am sure.

For those who have not been hanging on my every adventure; I will want to know why. Here is a explanation of why I was awaiting the OT’s safety proclamation on my bed. It had been moved. Is that enough or do you need more? OK, so just a bit more context. We moved into a new house in June and it has been in the process of being adapted by a DFG grant for most of the time since then. Not solidly, there have been gaps. Plus we have had work done ourselves; like making the garden accessible. The DFG grant has put in a through floor lift from what was the garage into my bedroom above and added a wet room en-suite. The bedroom is not large and so a lot of the things I had in my previous bedroom will be in the converted garage below. Apart from the flooring on the converted garage a few adjoining rooms, which we held off getting done till the messy work was completed; all is now finished. Yesterday my hospital type bed was moved to my bedroom which had an H type ceiling track hoist fitted the day before. All caught up?

Only hours before the bed was moved up, I had no curtain or blind in my bedroom and I was thinking that I would get to know the neighbours a lot better. Or rather, they would get to know me. Fortunately, our neighbour fitted a blind for us in the morning and saved my embarrassment and decency. He also saved the eyes of everyone in our close.

Here I was waiting to use my new bedroom, new bed, new hoist. I had already used the new wet room. Having gone up in the lift in my shower chair; covered in a thick layer of towels. Waiting with baited breath; I’ve always wondered about that expression. Sounds more like a fishing term than being paused on the edge of excitement. Mind you, the few times I have been fishing I just ‘held’ onto the bait, not sure how to attach it to the hook. So maybe that’s were it comes from. All of which is irrelevant, stop distracting me. Now you are holding your breath, waiting for me to continue. More likely you have swiped onto the next feed.

If you are still with me. You now understand why the OT’s hesitancy over a couple of centimetres was so important. Actually, this particular OT was filling in for my usual OT who is on holiday. So I had not seen her before. Perhaps because she was covering for someone, meant she was extra careful. It occurred to me, that I was glad she did not get me to test out my new ceiling hoist. The way she measured everything on the bed, I had visions of what it could be like with my sling and hoist:

Imaginary scenario:

OT: “Patients bottom is 40 degrees from the perpendicular.”

Me: “Will this take long?”

OT: “Not many more measurements.”

Me: “That’s good, I’m getting uncomfortable.”

OT: “Ah, where is it pressing in and hurting?”

Me: “Well… you know… where slings tend to on men.”

OT: “Possible excess pressure in groin area, needs investigation.”

Me: “So is that it?”

OT: “Nearly.”

Me: “Great. Oh, that’s cold.”

OT: “Bottom hanging 12cm below sling.”

Me: “Now are you. Hey! wait a minute.”

OT: “Discovered reason for excessive groin pressure. Now fixed.”

Of course I jest, OT’s do not do the above. Anyway, at least my bed passed muster and I finally went up in the world. A feat I had waited many years to achieve. In fact I am sitting in my bed in my new bedroom writing this.

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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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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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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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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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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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Habinteg Essay

I didn’t win the competition, but I thought as the issues I raise are important I would share the essay as it made it to the final.

Essay Question


In 50 years’ time the nature of impairments may change significantly, and the proportion of disabled people in the population is set to increase. Taking these factors into account and retaining the social model of disability as a central approach, how should the design and construction of homes and neighbourhoods develop over the next five decades in order to be inclusive regardless of impairment.

Essay Answer


The Social model of disability says: “… that people are disabled by barriers in society, not by their impairment or difference. Barriers can be physical, like buildings not having accessible toilets. Or they can be caused by people’s attitudes to difference, like assuming disabled people can’t do certain things” . Assuming this to be true we need to establish a working criterion for ‘disability’.


‘Disabilities’ are not all the same as this term is used to describe a multitude of impairments from complete inability of a person to function unaided by medical intervention (i.e. a ventilator) and 24/7 care; to those who appear externally to have no issues but suffer so called ‘invisible disabilities’. The needs of someone with an ‘invisible disability’ such as deafness, cannot be met in the same way as the someone who needs medical intervention and 24/7 care. Even a less dramatic comparison such as between someone who cannot walk and someone who is deaf, can be used to demonstrate the wide variety of needs and the vastly different ways that those needs must be met. Both are very limiting problems with a complex variety of issues uniquely their own, but each solved in very different ways.


For me physical impairment dominates. I cannot walk and need carers to wash and dress me. My food must be prepared for me and everything brought to me. I must have a home with ramps and wide doors. I need a ceiling track hoist and a wet room. These are a few examples of the adaptations that I need to cope with my impairment. Someone who is profoundly deaf may need a visual doorbell and text phone, perhaps a loop system if they have any hearing. These are just a few examples but obviously very different ones to my needs. Yet both would count as ‘disability’. This simple comparison shows that the term ‘disability’ cannot be used universally to describe all those of us with impairments without additional information.


Given the fact that ‘disability’ is such a wide ranging term providing one type of housing, care or provisions generally for ‘disabled’ people is like trying to provide a written pamphlet for a roomful of people from different countries all of whom speak different languages. It is an impossible task. You cannot succeed to provide all things for all ‘disabled’ people in one way. Yet as a nation we have set out plans to help ‘disabled’ people as if we were all the same. We cannot all be treated the same. There is only one common ground that I can see, we are all human beings with human needs. We need each other and the biggest lack in modern society is a lack of community. We have become isolated and boxed in. Many of the issues surrounding ‘disabled’ people are to be found in society at large and stem from that isolation.


Therefore, the first and greatest need which must be addressed in homes and neighbourhoods over the next five decades is a restoration of that sense of community. This is both a social and a physical change which will bring mental and physical health benefits to our society. It may seem to be unrelated to the question but in fact unless we deal with the issue of community, we cannot solve the problem of homes and neighbourhoods. The two are interrelated as I will endeavour to show.


We have come to believe that self-reliance and isolation are the ultimate goal for our lives. In pursuing this goal, we have, as a nation lost sight of the benefits of being alongside others. This has meant that as a society we have fallen in a black hole of care. Too many people needing care and too little money and too few people to provide it. Likewise, we have failed to provide suitable accommodation because we have tried to approach the problem in the wrong way. To solve this problem, we must first solve the underlying social issues that cause it then the issue we want to solve can be tackled.


If we look at society as it is now, we can see the outworking of the process of isolation at every level of society from families to neighbourhoods to work environments. Families have become smaller networks involving perhaps just one parent on a regular basis, wider family being either unavailable or at a distance. Neighbourhoods have been created where there is no natural interface between neighbours. This is sometimes an outworking of differing work patterns, but often exacerbated by the lack of common areas to meet or just come across others. Workplaces have become more controlled especially for lower paid workers. Either offering zero hours contracts which limit work contact with others to times when work is actually carried out and therefore removing social interaction with work colleagues or limiting numbers of staff to the point where workload precludes time for social interaction. Time outside work becomes a premium that must be split between competing needs. The results of all these factors is a lack of community at work or in our neighbourhoods and families which then feel stretched and often fractured. The result is a tendency to hide in our sanctuaries and pull up the drawbridge. Stress causing us to not want any further interference from outside. All sense or desire for community is lost and any natural care and concern that people feel for neighbours go. Research has shown that isolation has a negative effect on the elderly, even reducing life span. It seems self-evident that this will apply wider.


One thing that is quite apparent in this current Corona Virus Crisis is the way that community is growing. Ironic considering the instructions to isolate. But community is not only about being face to face, but also caring and understanding. Groups are spontaneously forming in towns, villages and cities to help and support neighbours and the vulnerable. One example is in Gloucester. Neighbours are talking to each other, albeit at two metre distance. The reason for this change? Time and being at home will play a part, but also a sense of a common goal. People naturally want to act as a community, they miss it and enjoy the sense of working towards a common goal.


I have laid out a wider social issue than ‘disability’ because it fits into the whole. Being impaired does not exclude us from society, we are still part of the whole picture and very much aware of the problems. To deal with the issue of homes and neighbourhoods into the next five decades we must deal with the whole of society. The reason we have so badly failed in the past is because ‘disability’ has been seen as a problem to be solved separately rather than part of the whole picture of society.


For change to happen it must be included in the whole social planning process then we can see real change. For that change to happen there must be the political will. Community is the key, together as a mix of different abilities and backgrounds we can form a diverse group who support and encourage each other. Taking encouragement from the fact that people do want to act together. We have spent years becoming more and more isolated. People no longer know or trust their neighbours, yet we have seen that can change, people want it to change. What is needed are new housing estates with localised shared facilities, almost like mini villages. Going back to an earlier idea. These would naturally form communities with a wide age range and social background. Schools and shops, community centres, medical centres and other facilities would serve each community. There need to be areas where people naturally come together. The variety of impairments represented would fit into the general mix. Housing would be varied and cover all needs. By bringing people together in community there is a tendency to increase the pool of care for each other. Not everyone needs professional carers. Sometimes we just need a neighbour who will take us shopping, a friend to chat to. Many professional care companies provide ‘sitting’ services. These are basically carers who are there just to be company. If we again lived in community rather than isolation, then we would be company to each other. I am not suggesting neighbours provide washing and dressing for those of us who need that. But there are many things that friends and neighbours used to do and would be happy to do, which are now covered by paid carers. In a society struggling to cover such costs and provision, this is an obvious advantage.


To provide housing that meets the needs of all impairments would be impossible in one type of house. Indeed, I see no reason to attempt such a thing. I understand that it may seem convenient to lump together all types of impairments. But it cannot work in practice. I am aware of housing associations who build houses which are suitable for wheelchair users as standard. What I don’t understand is why. How many wheelchair users are there? Surely it makes more sense to provide appropriate housing rather than build unnecessary features and waste money and space.


A property suitable for a wheelchair user needs wide doors and halls, extra turning space, a wet room, possibly ceiling hoists, raised kitchen units etc. To provide this for all ‘disabled’ housing would surely be unnecessarily costly and wasteful. A property for a non-wheelchair user needs to cater for the impairment they have. A blind person may need Braille signage and clear ways through the property. A deaf person may need visual clues to doorbells etc. Someone who struggles to walk needs a property on the ground floor. Housing for able bodied users have different requirements. A mix of all these properties in each development makes most sense to build community.


The neighbourhood is another important consideration. If every new building project had all suitable types of properties, then a community of different people could be formed. This would also have a secondary benefit of preventing ghettoization of ‘disabled’ or elderly people in special properties. By doing that you prevent the creation of viable communities.


In all these instances the key issue is suitability rather than uniformity. There is an adage used in the Estate Agency business, ‘Location, location, location.’ The location of a property will ultimately make the suitability of it work or not. It will not be suitable to place a person suffering from an impairment who has no transport at a distance from any amenities. Nor would it work to place a person suffering from an impairment with a vehicle in a property without nearby and suitable parking. This applies wider to families or elderly with or without cars. So, within a development positioning of properties is important but also the suitability of particular developments to some types of impairment would limit their suitability for some potential residents.


Cost is of course another limiting factor for most ‘disabled’ people. Some are still able to work or have independent income. But for most we are reliant on disability benefits for our income. For those able to buy a property it would need to be available at a subsidised price on a government scheme. Affordable housing is a wider issue than just for ‘disabled’ people.


We need to be planning a large-scale building project within all new builds in every area. Each project must include housing of different types. Housing that suits wheelchair users and non-wheelchair users with other impairments. All built in a community of housing that suits a variety of family types, ages and social backgrounds. There need to be common areas where people can naturally meet. Things only change when we choose to change them. We are too used to moaning about problems and creating reports about issues. If we really want to make a social change then we need to stir up the political will to make that change. Back in the Victorian times when the middle classes were shocked by child labour, they lobbied for change. Stories were written to stir up public feelings but, in the end, it took campaigners to create legislation ultimately things must happen, and political change occur if we are really dissatisfied with how things are now. It is up to us to make that change.

The original essay had full source references.

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Bumpers

Have you ever looked at the front of a wheelchair; no? I am not surprised, unless you use one or have a relative in one, why should you? So next time you see a wheelchair out and about, take a look. I am going to get in so much trouble now. People are going to be staring at wheelchair users’ legs and feet. That could be most inappropriate if the user is a young lady and the person staring a man. So, use discretion, I am not suggestion anything untoward here, just an observation of a simple fact: Wheelchairs are designed in a very odd way.

I am not sure whether a wheelchair users’ feet are seen as less important than a wheelchair or it is just thought that a lot of wheelchair users have no feeling in their feet. Either way our feet are the bumpers on wheelchairs! That is what you will notice just before you are arrested for inappropriately staring at wheelchair users’ legs. I pointed this out to the wheelchair OT at my latest assessment, our feet being bumpers, not about staring at people’s legs. He seemed to miss my point about my feet being at risk and talked about the damage done to the wheelchair leg rests. Apparently, they bear the brunt of impacts and are not up to the job. Mind you my toes were not really built for impact either. Obviously, I do care about the damage done to my wheelchair, but call me selfish if you want, I rather value my toes. I have quite a large power wheelchair and it can drive my feet very heavily into a wall or door if I am not careful. I do try very hard to be careful. But there are occasions when a tight corner or an unseen bit of furniture surprises my toes; and me. It is not a pleasant surprise.

We once travelled in a taxi supplied by the train company when the trains were cancelled. They booked a taxi that was too small for my large power chair. I could see that fact immediately and pointed it out. But who am I? Just a wheelchair user. So, the taxi driver overrode my objections and tried to cram my chair into his cab; insisting it would fit. My feet were telling me it did not fit and it took a lot of argument before he accepted that I could not go any further forward and that my feet were already crushed against the seating. Still the OT would have been pleased, the leg rests never touched the seats and so were undamaged. I wish my toes could have shared in their rejoicing.

I asked the OT why wheelchairs do not have a guard around the users’ feet. His answer was more focussed around the weakness of the leg rests rather than protection of the user’s feet. To be fair to him, I think he was trying to say that the leg rests are not a strong part of the chair anyway so you cannot use a guard around them to protect the user’s feet. For my part I would use a car analogy. Passengers in a car are protected by a crumple zone. In the case of an accident it is considered acceptable to sacrifice part of the car to protect the occupants. It seems human beings; if they are car passengers or drivers, are highly valuable. Whereas, judging purely on experience and observation, wheelchair users are not as valuable in the eyes of manufacturers or the legislators who decide the specifications of wheelchairs. Perhaps a few of the people deciding on the safety issues of wheelchairs need to try out a few days in a wheelchair?

Isn’t it time that this changed? Are we as wheelchair users less important of protection than car users? I have highlighted our feet, but wheelchairs are not fitted with proper restraints as standard, nor is there a national standard for their safe transport in cars, taxi’s, trains, coaches and buses. Each wheelchair has its own position and type of fixing point. Likewise, the restraints used in the different forms of transport vary greatly in type and safety.

Perhaps we are seen as a silent minority or an unimportant part of society. Maybe some see us as inconvenience or a drain on resource already. In these difficult times perhaps, there would be many who would question raising any issues that would cost anything to fix. But I would answer this; should we wait for a convenient time before highlighting a potential danger? When is a good time to say that something is unsafe, unfair and needs urgent attention? Now has to be that time. Anyone who has experienced these issues first-hand will understand. If you don’t understand try spending some time in a wheelchair, especially a powerchair. Negotiate tight doorways and corridors. Travel in taxis (smaller ones not the big vans, they are rare) and on buses (that is an interesting experience in a powerchair). As for trains, they are an area all of their own. Even have a trip down the high street and into shops. When you realise that your feet are the first thing that will impact whatever is ahead of you then your perspective will change.

I will end with one last thing to point out about all this. I wear slippers most of the time, even out and about in my wheelchair. That’s because my feet swell, and shoes are extremely uncomfortable. Plus, shoes are not exactly necessary as I cannot walk or stand. I understand that slippers make my feet even more vulnerable, but this is very common for permanent wheelchair users. Those of us who cannot stand up. In fact, I know of many wheelchair users who wear just socks or a kind of flip-flop. So, don’t assume that footwear could be the answer to good protection. Suggesting that a hardened shoe would do the trick just wouldn’t work. Apart from sizing, comfort, and shape there is the issue of the whole foot being attached to your ankle. When an impact occurs, the whole foot is pushed back. A large shoe would just stick out more an exacerbate that effect.

The only answer that would work is to fully protect the user’s feet with a bumper that is not our toes. If each leg plate had a protective strip around the front that would bear the impact. It is true that the leg rest might break in a bad impact, better that than the user’s toes. The leg rests would act like a wheelchair crumple zone. At worst, the whole of a user’s leg would be pushed back a little under the chair. But our toes and feet would be safe. I for one like that idea a lot.

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Fly by Wire

No one could accuse me of being fast. I have been in a wheelchair now for 2.5 years and I realised the other day, the wheelchair is my mobility. Yes, I know, earth shattering. Bear with me, what I mean by that is, it’s how I move around. Another earth shattering revelation. Sounds obvious, but here’s a thing, when you are on your feet walking, you just… well walk. If you want to go somewhere you don’t think about it consciously you just do it. In a power wheelchair and I assume a manual, you have to take a separate action to go somewhere. In my case a joystick. So I am sitting in my chair and I want to turn around and fetch something behind me. I have to push the lever right or left and rotate the chair. All this might sound really straightforward and simple. But think for a moment, it’s an extra level of action to achieve a simple result. I want something just out of my reach, I can’t just swivel and get it I must power the chair around to get it. Something is a little too far ahead of me to reach, I have to push the joystick forward to move the chair and therefore me in reach. It was that realisation which hit me the other day. I no longer rely on my body to get me to somewhere, I am relying on a machine. Just a quick aside, I guess as babies we learn to use our bodies as a kind of machine to do what our brain wants. By the time we are an adult it’s automatic. But a wheelchair is never going to be s smooth and intuitive as the human body.

The dawning of that realisation was quite powerful for me and caught me out. I had to stop and process it. Because it means so much more than it sounds. It is about independence, mobility, reliance, technology, artificial movement, disconnection between aim and action, re learning movement and a whole lot more.

These days most aeroplanes are operated by a ‘fly by wire’ system. What that means is that when a pilot pushes a lever or operates the steering yoke, that movement has no direct connection to the thing it will move. Instead it sends a signal to a microprocessor which eventually tells the ailerons, wheels, brakes or whatever what to do. That may not sound important or significant, but think of it this way. When you steer your car, the steering wheel turns a physical ratchet that turns the wheels, yes with power steering you get assistance, but it is still a physical connection. When you operate your car brakes you push onto a pedal that compresses fluid that directly presses onto brake pads, again yes there is assistance built into the system. There may well be high tech cars that are more like aeroplanes. The point I am making is that when you do something which is one step removed from he physical there is a disconnect. You experience what I mean when you operate your computer or smart phone and it doesn’t respond immediately. You know how frustrating that feels. Pressing on a mouse or the screen and nothing happens. Some may argue that an electronic interface is faster and better than a direct input from a driver or pilot. Certainly I can’t see any way a pilot could directly pull a lever and operate the gigantic ailerons on a modern jet. Although whenever I find my computer freezing up I do wonder at the sense of that argument. It does rather put me off the idea of self driving cars. I think I would like to see a PC or smart phone that works 100% of the time before I put my life in the hands of a computer driver. But my point isn’t what is better, just the fact there is a disconnection. We can accept that with machines. But when it is our own body, it’s harder to accept. The distance between action and reaction, aim and result can feel a long way.

I was thinking the other morning just how complex and time consuming it is for me to get up. When you are disabled everything takes so long. That’s because equipment is needed to enhance, enable and complete the things I do. Mobility is really just one small part of that and my realisation the other morning was an eye opener for me. I hope I’ve lifted the lid on it a little for you.

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Pain is an odd thing

Have you ever stopped to think about pain? We only see it as a bad thing, but pain is there to protect us. Without it we would do stupid things, if you do stupid things anyway then I am not talking about you. But pain protects us because without pain stupid actions wouldn’t hurt. We would be unaware when we injure ourselves or cuts go septic. We would strain muscles beyond their capacity or run on broken legs. You only have to observe someone who is drunk to realise the damage they cause themselves and others when they are unaware of pain. The same is true of someone high on illegal drugs, or some legal ones for that matter. So for anyone whose idea of fun on a Friday night is getting blotto and having a fight you won’t get this. The rest of us will understand.

Then there are diseases and medical conditions that affect our sensation, what we feel physically. Leprosy is one of many diseases that destroy the nervous system, I know it also causes other things. But I am focusing on its preventing people from feeling pain. The result is that even a small injury to a foot, hand or eye can become so bad that permanent damage or disability is caused. In diabetes loss of feeling in feet can result in damage to feet. Pain is needed as a protection. Peripheral neuropathy can feel like you are wearing rubber gloves when it affects your hands or socks when it affects your feet. It’s one of the conditions I have and I remember when it first affected my face. I wasn’t sure if I was having a stroke. There was no droop, no problems with speech or left side problems generally. I just felt like I had been to the dentist and had an injection to numb one side of my mouth. You know that sensation you get an hour or so afterwards as it wears off? When the effect spreads to the whole of one side of your face, that tingling numb feeling? That is what it felt and often feels like. I actually tested it by sticking a pin in my face; no sensation at all. As an aside I do get loss of feeling in lots of other areas. But that first time it affected my face and nothing else.

I wrote a blog about losing the sensation in my left arm and calling 111 ‘An unexpected emergency’ after I realised I could stick pins in my left arm and face without feeling it. There’s a common theme here, it sounds like whenever I lose feeling I stick pins in myself. I think it’s because I can’t quite believe the feeling has gone so completely. That’s the problem, we need pain. Without it we can stick needles in our arm, it doesn’t hurt. We don’t know we are injured. There is no warning. If I was stupid I could really have injured myself.

Pain works in two ways. One way is the signal sent from nerves to brain as a result of pain stimulus that could be harmful. A sort of ‘stop doing that’ or ‘slow down your injured’ kind of signal. The other is the nervous system firing off pain signals with little or no stimulation, in this kind the pain is regular and unrelenting. Ironically I find that areas of my body that lose normal sensation can still feel pain from these miss fires. The result is the same, severe pain, the cause is different. I am no medic so don’t take medical advice from me. But from my understanding pain that comes from the nervous system misfiring is not easy to manage with tablets. The reason being that the cause isn’t inflammation or temperature or infection. The pain receptors themselves need cutting off or blocking. I am sure medics reading this are throwing their hands up and saying how I am over simplifying it all. But I like simple, I understand simple.

Migraines are an odd kind of pain. They are unlike other headaches. Many headaches are caused by tension, muscles in the neck or face getting stressed. These respond to exercise and things like ordinary pain killers. I guess because of the cause. But I am told migraines are caused by the blood vessels in your brain constricting then releasing. When they constrict you get all sorts of weird effects, auras, odd smells, visual effects, tastes, loss of feeling in various places. Then when the vessels release you get a thumping, agonising, blinding headache that seems unresponsive to pain killers and makes you susceptible to light. It’s difficult to see purpose in migraines. I am told that everyone can potentially get migraines, but for most people you would need to go without food or sleep for days and be really stressed. For a migraine sufferer a bar of chocolate, glass of red wine, bright sunlight, missed meal, stressful day or poor night sleep can cause it. I guess a migraine is meant to be the body’s protection to over doing it. But for some of us we get migraines too easily. Migraine pain needs a whole special kind of treatment that I am not going into here. I will just say, it’s not just a headache.

Pain is just so strange because, while it’s necessary and a protection to us, it can so dominate our lives that everything else is pushed out. Chronic pain (meaning ongoing, long term) is really hard to cope with. It feels like the body has gone haywire. If the body is so overwhelmed by pain that everything else is drowned out, then it’s hard to see how it is functioning as it’s meant to. For example: if you were going to set up a signalling system of lights on the ground for an airplane to land at and instead you just flood light the whole of an area, how would a pilot know where the airfield was? In the same way if pain is a warning system, but you get pain all the time, how do you know when and what to listen to? Pain only works effectively if you get it occasionally and in one area at a time. Otherwise it’s like the boy who cried wolf, we can end up ignoring it.

I started by saying pain is an odd thing. I stand by that, or in my case sit or lie down by that. Pain is very peculiar. We need it, yet we hate it. We would probably all choose to do away with it. Yet without pain we would be in severe danger. Pain protects us and keeps us safe. But pain can get out of kilter and cause issues. We can end up trying to control it and failing. It can so dominate our lives that we ignore it. One thing is certain we cannot do without it.

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A blog by a relative in NZ

Tuesday 14 April, 2020
(S.B. on her work as an essential worker in a Wellington NZ hospital during lockdown)


I’ve never been afraid of hospitals. I actually find them sort of comforting. I was in a burns unit as a pre-schooler and I wonder if it imprinted on me somehow. The faintly antiseptic scent. The uniforms. I even like the smell of mashed potato that I sometimes get a whiff of from the meal trolleys.

I do ultrasound scans of hearts – called echoes – for a living. People either get it or they don’t. They look at the screen with the same interested awe as me, or they say “is this what you do all day?” And I say, “Yep, hearts all day long.”
I’m lucky, I really like my work. But it wasn’t a life-long dream – I never even knew it existed. I’d been overseas and when I came home my brother was sick and in hospital for a long time. I remember walking around the corridors thinking ‘I’ve got a science degree, I must be able to get a job here.’
But right now I’m a little afraid of hospitals, and of my job. When people come for an echo I get them to undress to the waist and lie on their side facing me. I say: “It’s like a pregnancy scan, but looking at your heart.” When I put gel on their abdomen and rest the probe on their skin they say “Is it a boy or a girl?” and I smile and say “Twins.” Often, they are nervous. Their heart rate gives it away. But usually by the time I’m finished – about half an hour later – the rate has come down. We’ve talked about the weather, their family, their plans for the weekend.
There’s no way to do an echo from two metres away, or in less than fifteen minutes. You can often smell the coffee they’ve just had, or their brand of soap. It’s hard to smile at someone behind the masks we now wear. Hopefully my tone is chirpy – I’ve tried to be more expressive with my eyebrows.
I’m very lucky to have a job, to have an income. My commute time has halved, and I can park in hospital grounds without charge. Yesterday I skipped a supermarket queue with my ID card. I have somewhere to live, and food and electricity and water and firewood.
When I drive home I go along Paekākāriki’s The Parade, to greet Kāpiti Island. I see the locals out walking in their bubbles. My bubble is me, my husband, our daughter and son, and the dog – and all the patients I’ve scanned and will scan – and all the people in their bubbles. I think about actual bubbles and surface tension, and how the bigger they get the more unstable they are.
At the end of the day I do what I can. I disinfect my pen, phone and swipe-card. I leave my work shoes behind, and change out of scrubs. I wash my face, hands and arms to the elbows. I drive home and leave my shoes in the car. I wipe down the steering wheel, the gear stick, the door handle. I go into the house by the back door and straight into the shower. The clothes I’ve come home in go into a hot wash. I’ve taken off my wedding ring and pounamu.
We’ve cleared out the spare room, but we’ve only got one bathroom. We’ve bought plastic plates and bowls so if I get sick no one has to handle dirty dishes. We’ve got a sort-of-plan except for if or when I should isolate myself from them. Lately when my daughter comes for a cuddle she says “I’m scared.” One time I asked her what I could do to make her feel better. She said “never stop hugging me.”
Online everybody is exercising, baking, busy in their gardens, and posting creative schooling ideas. It feels like they are inside a different kind of bubble, but one that is shared. I call my sister the midwife, another sister the nurse. We grumble about bookings, PPE, infection rates in overseas healthcare workers. It feels good to speak in a common tongue.
There was early rain but this afternoon the sun came out. We made paper Easter eggs for the window. There were only 29 new cases of Covid-19 in New Zealand. I hugged the kids.

…and a great parking place

There are a lot of assumptions made about disability by able bodied people. A common one is how great it would be to have a free parking space near the shops. Let me debunk that one first. Most councils now charge for blue badge spaces in car parks and they are not always nearer to the shops. Yes, it’s true, if you can find space on a yellow line you can park for a limited time. But that’s a big if and you still can’t block roads or cause problems. Probably the biggest advantage should be blue badge spaces in supermarkets, but often they are full or being used by non badge holders. They don’t tend to be policed well. So you don’t really get a great parking space.

Another assumption is that you get lots of Government cash, benefits, grants etc. But what that ignores is the cost of everything with a disability tag. Put the word disabled in front of it and any product is loaded in price. Holidays, when possible at all are complex and often expensive. If, like me you need hoists and wet rooms, the property availability is short and price loaded. Travel should be the same price as for able bodied, but sometimes it’s only possible by taxi. When I was able to walk I used to walk for miles, often choosing to park a long way from town centres. If you can drive then often cars need adaptation. Yes there is Motability which can provide a car, but many people don’t realise that is paid for from your disability benefits, it’s not a free car. So yes there is extra government money for disability, but it doesn’t cover all that you need for such a limited life. You might argue that other countries have even less. If that is your way of looking at life, then so be it. I would rather aim higher.

Then there is the assumption that being in a wheelchair or a bed must be a restful option. The number of times people have looked longingly at me when I have wheeled and they have walked along and they say things like: ‘oh you’re so lucky, I wish I could ride along.’ Or  ‘can I have a lift?’ Disability is a complete package, pain, inconvenience, limitations, frustrations, and everything that entails. You don’t get to just choose the riding along in a wheelchair bit. Or lying in bed bit. In fact before I was ill I never managed to stay in bed very long, except to sleep. I never lay in, so being in bed all the time is a trial for me not a luxury.

So if you are thinking disability sounds desirable or a bit of a doss; think again. No one in their right mind would chose a long term illness or disability. People might pretend to be ill to get benefits. But such cases are very rare. Much rarer than they appear from the frequency of reporting. It is much more common for people and companies to cheat on their taxes and defraud the government in other ways. No we are not to be envied, but I am not asking for pity either. What’s needed is respect and understanding. No one can fully understand another without living their life; that cuts both ways I know. I respect and understand the hard work of those who are able to work. Respect is a two way thing.

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Snapshot

I have always loved photography. Back in the 1970’s an era that I have read in the history books, OK an era I lived through, I first discovered it. In those days it wasn’t digital, no, you needed chemicals and enlargers to process photos. I took and processed black and white photos. As a photographer I was always trying to capture that perfect moment, to freeze that moment in time when everything looked so beautiful or dramatic or interesting.

My first job was at a photographic studio in London. I worked in the black and white processing lab. We hand processed and printed the photos from the studio and also from other professionals. This included some smaller magazines that didn’t have their own in house facilities. So I would often be printing dramatic, news worthy pictures of people. One common feature of these was that it caught the person in a pose or a moment that ‘said’ something. Think about the cover photos on magazines and newspapers or posted on social media. They freeze time at the point of the photographers choosing. That frozen moment could be funny, dramatic, sexy, idiotic, stupid, poignant, sad… well you get the idea. Here’s the thing though, it’s a snapshot taken in around 1/60 of a second. So a very brief moment of time. It can be that fleeting a moment. But once taken it is then able to be studied at length, commented on, laughed at and criticised.

Here is why I have written this blog. I saw a set of two photos that are the marker photos for a video of an advert for George clothing. They are of a young lady with ME who, according to the tag line did the photo shoot to raise awareness of ambulatory wheelchair users. That’s people who have wheelchairs but don’t have to use them all the time. I assume the awareness she is wanting to raise is that some illnesses can be just as limiting even though you don’t need to be in a wheelchair all the time. The words that accompany the picture certainly give that thrust. But a picture, especially a snapshot is far more powerful at affecting ideas than the accompanying words. So what do these snapshots show. One shows the young lady balancing unsupported on one leg, in a dance pose, the other shows a different dance pose alongside someone else but equally difficult and strenuous. If it wasn’t for the wheelchair behind her you would just assume it was the picture of a dancer. In neither picture is she touching the wheelchair. She does in the photo shoot and video generally, but remember this blog is about snapshots.

What message do two snapshots give? That a fit young lady likes to dance by wheelchairs? If you read the caption and know she has ME, then you modify that to something like: ME doesn’t stop you dancing, or you can be just as fit and strong in your legs with ME as without. These are of course nonsense conclusions about ME. It is an illness that dramatically limits the body’s ability to exercise. A repeated action, by repeated I mean 2 or 3 times can totally exhaust a muscle in someone with ME. Most people I know with ME would struggle to balance well much less dance. It is an up and down condition, but even on its best days someone with ME does not feel up to dancing around. Plus the effects of such a thing would put an ME sufferer in bed for days afterwards.

The problem is that ME or CFS as it is now called is a diagnosis of exclusion and many conditions can end up with that diagnosis after excluding other things. There isn’t a single diagnostic test for it. I am not very happy with the way doctors hand out the diagnosis. It seems a way of preventing them having to keep investigating. I speak from experience. I was given a diagnosis of ME in 1994, no MRI or very many tests at all had been done to rule other causes out. In 2007 further tests showed that I had peripheral neuropathy caused by long term nerve damage from pernicious anaemia undiagnosed in the 1990’s. It wasn’t until 2015 that a full MRI was done and showed further spinal complications. So you will understand when I say ME is not a brilliant diagnosis. I have no idea if I ever had ME because those other conditions have very similar symptoms. Had they been looked for and found in 1994 would they have said ME? Who knows, I realise one can have multiple problems.

Back to these snapshots. If you freeze a moment in time you are going to give people a picture of that moment. Whatever the lady’s intentions were. The result will be that people will see a healthy young lady dancing by a wheelchair with a headline that tells them she has ME. This will feed into an existing prejudice that says many illnesses are false, many people in wheelchairs could walk but choose not to. It will pour oil on the fire of disbelief. What it won’t do is make people think, ‘oh yes, of course some people can still struggle to stand or walk a little when ill, but still need a wheelchair at other times.’ That’s the message she wanted to put over. I would have thought standing by the chair would have put that message over. But what photographer is going to take that picture.

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Thinking outside the box

(If you haven’t got a sense of humour, don’t read this)

The trouble with wheelchairs is the wheels. Obvious I know, but true nevertheless. You can’t go up pavements, stairs over deep mud, snow or up mountains. We need a means of getting about that mimics the human leg. An exoskeleton that supports the whole body. Anyone who has seen Iron Man will be ahead of me here. In fact you will have overtaken me and headed back to the changing room laughing. OK, so there are a few problems. We don’t have the technology, huge cost, the power source in his suit is make believe. It has a computer that is beyond unbelievable. Hey, who’s counting? Oh you are. Well bear with me.

There are some positives to the idea. Just think about it. You wear an exoskeleton of metal that basically does all the standing, walking and who knows maybe flying for you. Imagine the possibilities you are out walking, yes walking down the high street. Someone goes to push your disability equipment without your permission (your Iron Man suit) and you fire one of those hand lasers. No ifs or buts, problem sorted. Someone gets shirty about your disability or questions your having a Blue Badge, mind you with an Iron Man suit… anyway you blast a hole in the ground in front of them. Argument ended! Or maybe you just fly off; dramatically.

Just think of arriving at venues. No more queuing up, you just fly in and land centre stage. Of course it would be a bit bulky to wear all the time. But the suit would just fly off into a suitcase, like in the movies. Then when you need it, you press a button or call your computer butler and you are in it again. No hoists or helpers, all automated.

There may be slight issues of cost. Perhaps the NHS might baulk at funding the many millions each suit would cost. So maybe a voucher scheme? Fundraising? Anyway I can’t think of everything, I am just the ideas man. Did they say to Edison, ‘no one would be able to afford to electrify their home?’ Well, probably, but that’s not the point. Cost isn’t everything, OK so maybe it is rather important.

Exoskeletons are most definitely the way forward. Fully supporting and doing the work of walking, running, flying, fighting, oops I mean whatever, it could be washing up rather than fighting. Imagine the skies filled with flying ex wheelies. What would we call ourselves, Flyees? The mind boggles and I hope chuckles. But there is a serious point to my nonsense. Some form of exoskeleton might work, not Iron Man style, but a body fitting and supporting robotic aid. Maybe a future idea.

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Seeing in a new way

I was reading the other morning and I thought ‘hello, what’s happened to the writing?’ I couldn’t understand where the words in the middle of the page had disappeared to. Then I remembered that this had happened before. That sounds like the line out of a film. ‘It had all happened before, and it would all happen again.’ What movie is that from? Yes, all you clever lot out there it’s JM Barrie in Peter Pan echoing the, Bible the book of Ecclesiastes. I think it’s also been used in Battlestar Galactica among other movies and series. So, had my eyes become youthful, childlike, like Peter Pan? No that’s not what I’m saying. I remembered that ten years ago I kept losing the central vision in my right eye. The GP I had at the time recognised it an ocular migraine. I was put on medication that has stopped the problem for ten years; it seems to be back.

The loss of vision lasted about an hour, then it went. That’s good I thought, until a bright shining light appeared across my right eye. It was brighter and more vibrant than any visual migraine light shows I have ever had before. I honestly thought that there was some sort of light sabre being waved around in front of me. Now I’m onto Star Wars; is this a movie trivia blog, I hear you say; no, I reply. The light was just so distinct and bright it reminded me of a light sabre. Although unlike a light sabre it had sparking colours at the edges. Ah the joys of a visual migraines.

For anyone unfamiliar with ocular migraines and who might confuse them with migraine auras let me quickly explain. An ocular migraine is where you get a series of visual disturbances caused by blood vessel constriction in the eye itself. A migraine aura is where blood vessel constriction in the brain cause a series of problems which make you hypersensitive to light, smell, touch and then leads onto excruciating pain. You can also get visual disturbances. I was therefore hoping these visual disturbances were an ocular migraine and not an aura, warning of imminent pain.

There was a point when I started this. My vision loss was central, looking straight at the page of writing I couldn’t read anything. But I could move my eyes to one side and use peripheral vision. That way I could just about read, albeit blurry. Of course I could have just used my good eye, but I don’t see well with one eye. It got me thinking sometimes we need to look at problems indirectly. Instead of staring at them head on so hard that we lose sight of the issue. We need to look to one side. Allow our minds to go into idle perhaps. Don’t focus on the problem, look to one side. One definite result will be a lowering of your stress level. Sometimes a result can be seeing a new way forward. It’s just a thought if you are struggling with an irresolvable problem. I speak from experience here.

Just to round off I didn’t get a full-blown migraine. It was only an ocular migraine. At least it got me thinking.

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Sense and Sensibility

I like Jane Austin, there I’ve said it, get all your ridicule out of the way now. Oh, you don’t have any. I really like Jane Austin, she was an author ahead of her time. Humorous, clever, insightful and radical. She was able to put over ideas about gender inequality in a way that even men at the time found acceptable, didn’t they? Well they should have done. She has a timeless quality and her books have been re imagined in so many ways.

Sense and sensibility is one of my favourites, along with Pride and Prejudice. In Sense and Sensibility Jane contrasts a sensible sister with an overly emotionally sensitive one. It can appear at first reading that the sensible sister, Elinor, is the heroine the one we are to see as right. Marianne, the overly sensitive one, seems so flighty and over emotional that it’s hard to emphasise with her. But, as in real life both sisters are on a journey. Marianne needs to gain more sense, but Elinor needs to get more in touch with her emotions.

Why on earth would I quote from that book? What relevance is there to me or you? I have been reading a lot of posts on disability ‘wheelie’ sites about comments non wheelies make to my fellow ‘wheelies’. I have also had a lot of, well let’s say ‘insensitive’ comments made to me. It got me thinking, ‘how do we respond to ignorance and insensitivity?’

It seems to me we can often be like one or other of the Dashwood sisters, Elinor or Marianne. Either too sensible or too emotional in our response. The sensible being to ignore the person being insensitive. The emotional being to get angry and upset, then shout or be rude back. Then it struck me maybe a better way forward would be somewhere between these extremes. Emotions are going to hit us, how can they not. If someone says something stupid to us. Accuses us of malingering or acts as a disability police, or maybe just pushes us unasked in our wheelchair. But we don’t have to respond to that feeling. We can draw on our logical, sensible side to realise that it is ignorance that causes such comments. How can people understand what they haven’t experienced. How can we blame people for believing the lies in the media. We need to help people understand, teach, explain, use our emotional response to drive us into a passionate defence of disabled people and our sensible side to prevent ourselves just ranting and getting angry. The world needs to gain insight into disability; not gain more reasons to shy away from disabled people.

The point of this post is a plea to my fellow wheelies. When you meet ignorance, pause, count to ten and think before responding. I know it’s tempting to respond like for like. To meet ignorance with ignorance. It can feel good to have a great cutting remark in response to an idiotic remark. But; if we are to change the hearts and minds of those around us, it can only be done through insight and knowledge. Communication is the key. People gain knowledge and understanding partly through hearing, partly through seeing and partly through experience. Do your part to help them understand.

If you are not disabled or limited and reading this then my plea to you is stop and look, listen, think. Try to put yourself in a wheelchair, buggy, hospital bed. How would you feel, day after day, limited, and frustrated. How would you feel when your moves and choices are so closely monitored and others feel the right to judge you and test you at every turn. Don’t jump to conclusions.

Communication and understanding will change things. Let’s not give in to hate or anger. Let’s take hold of our sensibility (emotional response) and use our sense to make an informed response to what happens around us. That applies to both disabled and able bodied alike.

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