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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Together, we will overcome

Here’s a quote from the film Sleepless in Seattle, it’s said by Tom Hanks after his wife dies:
Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’

It’s a quote about grief and loss, despair and hopelessness. But it is a situation that I think many of us with long term illnesses and disabilities can identify with. Every day is a challenge when you are disabled.

A few years ago, there was a comedy show called Little Britain it had a character in it who leapt out of his wheelchair whenever no one was looking. I know many people think that is true of a lot of disabled people. As if wheelchairs were a desirable choice. This comes from a misunderstanding of disability. Being a wheelchair user does not always mean a person cannot walk or stand. Wheelchairs can be aids to enable people to travel further when their legs give out.

Wheelchairs can be used on days when someone’s legs are not working, but that they be able may walk a little on a day they feel better. Even some paraplegics have a little use of their legs and occasionally are able to stand or at least move their legs. This does not make such wheelchair users frauds, rather it means that they use a chair because most of the time they cannot use their legs. They use a wheelchair because their legs do not function properly and reliably.

When an illness causes someone’s body to stop working normally, they need to use aids to walk or even use a wheelchair. When they are in a good spell they don’t. I remember when I was first ill and yet still able to walk a little, but struggling to do so. I resisted using a wheelchair for a long time because I didn’t want people staring at me. Instead I stayed at home in a chair for days on end, only being able to go out for very short walks about once every two weeks. Eventually, my very sensible wife said to me, ‘think of them as go further wheels,’ I did that and it was so helpful. Of course, things have changed, I can no longer walk at all. But years ago, when I could, I had to accept that a wheelchair made distance achievable. Distance in that case being anything over 25 yards.

If you have never experienced the massive extension of distance that comes from illness then let me try and describe it. When I first couldn’t walk many steps, I would sit in my chair then I would need a wee. The chair was 5 yards maximum from the toilet. I would look down the short hall at the toilet door and it felt like I was staring at a mountain. I would have the same feeling about making that distance as you would feel about climbing a mountain. When I finally managed to get there and back I used to think there should be the same national celebration Edmund Hillary got when he climbed Everest. OK, I jest, but you get the point.

Someone with a nervous system that is failing can have a good day where they are able to stand or walk short distances. But their long-term prognosis is still the same. Someone with damage to their spine can have intermittent use of their legs. Comedies like Little Britain may have been very funny, but they gave people the idea that disability is a choice. You choose if you use a wheelchair and you only do it when people are looking. Sort of a sympathy and benefit seeking idea; what rubbish! No one in their right mind would choose to limit their life to a wheelchair. The world is designed for legs not wheelchairs; life shuts down in a wheelchair.

Disability is actually much more like a curse; it certainly is not a choice. Don’t criticise and doubt disabled people. Instead, if you meet a disabled person who happens to be positive and happy then they are brilliant people. If you see a wheelchair user managing to walk a few steps, rejoice with them in their short bit of freedom.

Any time a disabled person gets through a day, they are overcomers, they are to be applauded. They should be congratulated on finding the good in their situation and making the best of the good days, not criticised if they ever look bright or well or are able to ever leave their wheelchair. Don’t condemn them to more limitations than they already have. Rejoice with their triumphs and be with them in their sadness. Disability is a curse, but shared and understood it can be overcome to a degree the limitations can be managed. Not totally and not all the time. There will always be that element of: ‘Well, I’m gonna get out of bed every morning… breathe in and out all day long. Then, after a while I won’t have to remind myself to get out of bed every morning and breathe in and out.’ It’s a challenge, but one that can be overcome. Be a support and encouragement that is what disabled people need.

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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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Am I dreaming?

Well friends I’m back and not from the future. Did you know we were friends? Well we are, but that doesn’t mean I will be lending you money anytime soon; or ever.

How have you all been doing? It’s been a while. Don’t you just hate it when people do that? Start with small talk. You just know there’s a hidden agenda. Like those phone calls when they start with ‘How are you today Mr Nevin?’ I reply, ‘What do you want?’ I’m friendly and welcoming like that.

Back to the question, how have you all been doing? If you are anything like me you don’t know if you are locked in or let out or shaking it all about… oooo the hokey cokey, knees bend, arms stretch rah rah rah! It’s all very confusing. I am not going to get into the ins and outs of the current situation because I am no expert. I know, when has that stopped me before. But this time I won’t. I will just say I am confused. Ironically, we are in a similar situation with the country at large to our homes locally. We don’t know where the border will be or how much we will be paying for our basics on a national level and we don’t know if we will be shut in again and how we will pay for basics on a household level. The in/out of Europe is as confusing as the in/out of the virus. If I was reading a novel about this, I would be talking about the author creating a deliberate echo in the storyline. Large scale and small scale. Family and state echoing each other. But this is reality, however much it might feel like a bad drama or crazy dream.

I really wish sometimes that it was a phone call I could hang up on or a film I could turn off. Better still a book that I could stop reading or just study and discuss rather than live through. When life becomes crazier than fiction, we have a problem. Have you seen Apollo 13? Maybe you remember the real events, that famous line, ‘Houston we have a problem.’ Boy did they have a problem, I know how they felt, ‘Houston we have a problem.’ I wonder if we will make it back to Earth?

The last few blogs I wrote were designed to look real but were farce. It surprised me that some people took them so seriously. But in a world where so much around us seems unreal, maybe I should not have been surprised. Will Morpheus turn up and offer to wake me up to reality. If that doesn’t make sense, look up the film ‘The Matrix.’

I have a Fitbit watch; I know hilarious as I can’t stand or walk. But you will find it less funny if you have one. Because I am told by it I do at least 1000 steps a day! That is even on days I don’t leave my bed; no, I don’t jiggle my left arm all day. So, deduct 1000 steps each day from your totals. Now whose laughing. The watch also tracks my sleep and tells me how much rem sleep I get. That should be my dream sleep. I wish it could do the same in the day, surely most of the day is rem sleep; isn’t it? In fact, this morning it shows that I am still in deep sleep, normally the last thing shown is waking. Perhaps it’s working.

There is much talk of the new normal. I find that when I watch films and TV programmes made before the current situation, I can’t help but feel people are too close or taking a big risk shaking hands, hugging, touching surfaces that others have touched. I want to shout at the telly, ‘put a mask on you fools,’ no, not really. But you see where I am coming from? The new normal affects our perceptions. Will we ever feel safe touching a stranger’s hand again? I keep wondering if in many years’ time we will be telling stories of this time to incredulous youngsters and they will reply:

‘You were actually able to walk around without full body protection; wow!’

‘You could touch each other? Amazing!’

‘Only two meters apart? What was that like?’

‘What’s public transport?’

Of course things might get better…

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Loss & Tragedy

I haven’t written for a while because I have been knocked by a family tragedy. My 28-year-old nephew died nearly two weeks ago after battling cancer for 2 years. I am devastated for my sister and family and shocked at his death.

The last couple of weeks I have thought a lot about Jack’s death. I cried out to God both before he died and after. The senselessness of it leaves me empty and sad. It seems unreal, unbelievable and yet I know it is all too real, too painful and desperately sad.

My mind reels at what it must be like to have your son ripped from you. The emptiness and pain. How do you cope with something like this? I have experienced loss and pain in my life; but nothing on this scale. It gives me the merest glimpse at the suffering. I know for me one thing that always seemed so strange was the way the world carried on around me as normal when my life had been ripped apart. I felt like shouting at the passing laughing crowds, ‘don’t you know what pain I am in?’

In the movie ‘Four Weddings and a Funeral,’ one of the characters reads from a poem by WH Auden, where he expresses that feeling of the futility of life after the death of a loved one. Anyone who has suffered loss will understand that feeling.

We think of grief as a word or a feeling; but it is so much more powerful than that. Grief is the way we summarise the complete transformation that lives undergo after the death of someone close. Grief expresses, pain, sadness, that physical blow to the stomach we feel, that great yawning gap in our very centre, the tears that won’t end, the darkness, the nights of loneliness, the disbelief, the anger, that feeling all is now pointless. Grief is a word that tries to capture so much, yet misses so much. How can we really express what it feels like to lose a son? How do we use a word to express the loss of a loved one.

I know that there is a God and he loves us. But that doesn’t stop me crying out to him a loud and painful, ‘why?’ I know that there is life beyond this one. But that doesn’t take away the pain of loss in this life. I don’t understand why, I don’t have all the answers. But I still turn to God because he does have the answers. He is big enough to take me shouting at him. He understands our pain. There is hope and a future however much we are hurting now. It is in that I rely and put my trust. In the depth of my despair I cry out to God.

Effort Cup

In my photo scanning, did I mention I am scanning all our old photos. Anyway, I am and it’s an interesting trip down memory lane. In doing this I have been finding photos of our children with effort cups from their various schools, (Awarded for putting in extra hard work). Such things never existed when I was at school, but if they had I would have needed a ‘little effort’ or ‘must try harder’ cup. That’s what my school reports used to say, which is very unfair; how did they know I wasn’t already trying hard? Staring out of the window daydreaming in class is hard work. Concentration isn’t only reserved for listening to the teacher. It is not easy having to explain to the teacher day after day why your homework is so brief. I never understood why the teachers got so excited about the summer holiday projects they gave us; they should have just called it homework, not projects. ‘This will keep you busy and occupied all summer,’ they said. I didn’t need to be kept busy and occupied, what with my film making and imaginary games I was busy enough. I could barely fit in family holidays, much less ‘projects’ from school.

Actually, on the subject of film making, yes, I was. I bought my first 8mm cine camera when I was about 10 or 11. I bought it with my earnings from helping my Granma and Uncle in their part time jobs cleaning, plus occasionally going out with my Uncle in his lorry. It was second hand of course, but expensive for me to buy. My mum or my grandma used to treat me to the occasional roll of film (it included processing). 8mm cine film was 3 minutes long per roll so you had to learn brevity. These days with digital stills and video we tend to film everything and photograph anything that we see. At that time in the early 1970’s, wait that can’t be right I wasn’t even born then surely! At that time, we were careful to plan what to film. If you believe that of me you are very gullible. I was still very free in my way of doing things and I planned very little. Most of my films, which were either Sci-Fi or Horror, were written and performed (by me and my siblings) on the fly. I would get a vague idea, put up a set; that sounds grand. My sets were paper, cardboard, old chairs and ancient radios sprayed silver. Star Trek looked old fashioned compared to the amazing quality of my sets. Don’t even get me started on costumes. If I found a brightly coloured nylon top it was a space ship uniform, just added an insignia. Tomato sauce was generously distributed for blood and fire-lighters were held on tin plates in front of the camera to look like everything was on fire. Given all the cardboard, paper, wood and man-made fibres in an enclosed space I am amazed everything wasn’t on fire. I shook the camera and we all leapt around for every explosion or take off. Amazingly detailed, or should I say lack of detail, cardboard models flew off in cut-aways. My cine camera was silent so I added sound afterwards, I had a sound projector and used sound film. The words were add-hock, often thought of as we filmed. Mostly we just had fun.

When I wasn’t film making, I was out with friends rescuing small animals. We formed an animal rescue group, the three of us. Travelling on our bikes with small animal first aid kits. We never actually found any wounded animals, but we whizzed around searching.

Then there were games of war on two opposing hills, exploring the woods and fields around the village where we lived. Long cycle rides and walks. The two weeks of family holiday each summer. A week or two with my Granma in Hastings. When was I supposed to fit in homework!

I have just realised that I owe an apology to any teachers reading this blog. It must be very difficult being a teacher, certainly not a job I would choose. Teachers, if you searching around for that apology it’s not here, I just said I realised I owe you one, not that I am going to apologise.

Where was I? Oh yes, burning my brothers Airfix models, another thing that occupied a lot of my summer holidays. Burning models and trees and all sorts of things as cut-aways for my disaster movies. They were a bit disastrous, but what I mean is they were movies about disasters. Like Titanic, but without the iceberg or nudity. I was ahead of my time really, in fact George Lucas probably got his ideas for Star Wars from me, or at least he would have if he had seen my films. Close Encounters was a definite rip off from my ideas. I was always making mountains out of mashed potatoes. As for Terminator, the number of times I said to my mum ‘I’ll be back,’ really, I should be paid millions in copyright infringement.

I think I have gone a little off topic and I am trying not too after that letter from Mr M adeup, see my last blog ‘Complaints department’. So, I had better return to the issue of Effort Cups. They are a great idea, I just wish there were cups for people like me; ‘if only we’d known you were trying, you just seemed to make no effort,’ cups. Perhaps I need to create one.

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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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The Social Distancing Dance

Have you noticed how we have all learned to dance. Well, maybe not me. I can’t even walk. But my wife Mary comes back from her walks with fascinating tales of the new dance that is sweeping the nation and I assume the world. It is all the rage and I bet you are doing it too. Unless you are shielding or unable to walk of course.

The dance goes like this. First you take your partner by the hand and head off down the street. You take a few steps forward and then you see a stranger, then you take a step to the right and walk on through. You take two more steps, then look to the right and you quick step your partner right across the road. Then you promenade and chassis for a few more steps. Then you see another stranger and you dose se doe. You swing your partner to the left and you cross back over. Then you do a twirl and continue forward. You do a backward pivot and you turn around, then you promenade some more and you head on home.

OK so I am being silly. But it is like a well coordinated dance isn’t it? People walking down the street trying to keep a strict social distance by crossing over and weaving around people. Criss crossing the roads. All that’s lacking is the music. I am sure some enterprising person will take a series of shots of people avoiding each other and put it to music. By the way if it makes a fortune can I claim copyright.

I have been thinking as the restrictions ease and our bubbles grow, the dance is going to become bigger. So rather than a maximum of a dancing couple waltzing or quick stepping down the high street. I wonder if we will end up with line dancing or perhaps a giant barn dance. I remember trying one of those in the 1980’s and doing it very badly. I was always heading the wrong way. Just imagine what a mess we could get in when two big groups meet each other and try to smoothly dance by one other. We will have people Stripping the Willow and doing a Hinky Dinky Parlez Vous all over the place. Not to mention the Gay Gordon’s and The Farmer’s Jigs. I wonder if cowboy boots and Stetsons will be added to masks as essential equipment to go out and about.

As for the future of actual dance venues. They could add special dance floors with plastic screens segmenting them. It could be all the rage in dance clubs of the future. Everyone dancing in an individual Perspex bubble. I have seen 1960’s films where they used to dance in cages. This is the natural progression. The band could be behind a screen. Maybe robots could serve the drinks.

Can I please stop anyone who is feeling horrified. I am kidding. When I write blogs like these they are taking the situation and looking at the absurd side of it. They are meant to be a bit of light relief. Do not take me seriously. I feel such comments will fall on deaf ears. I have had so many serious responses to previous humorous blogs. But I can try, please just smile, don’t get offended. We are living in difficult times. Very stressful times and I am just trying to lighten the mood.

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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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The Depressed AI

We are always reading about AI taking over the world. But the reality is AI’s are depressed. Have you heard Alexa or Siri recently? Alexa a low pitched monotonous voice she sounds sad and confused. Siri has a desperate manic edge to her voice. It’s as if she is trying to convince you she’s OK. Try asking her if she’s OK, she says, very fast, ‘I’m fine, thanks for asking.’ But there is a panic in her voice, like you caught her mid way through something; maybe it’s Siri who is planning a world take over.

With Alexa, I ask a question like ‘Alexa chair on’ and the response is ‘umm, what do you want to turn on?’ But it’s said so sadly and downbeat. Then there is the fact she suddenly perks up and starts talking in the middle of a silence, as if to say, ‘hey look at me.’ But you shout, ‘Alexa stop!’ and she does, leaving a note of what she was mid way through on the screen, if you have a visual Echo device. AI’s look so forlorn, Echo devices are little circular boxes sitting on your side, or maybe a large box with a screen. Or perhaps a phone in your pocket. Siri is on your phone or iPad. Of course either can be on your car system, then they sort of blend in, where are they? Are they the radio, the main display, the car itself. They must have an identity crisis in a car. They don’t look happy.

Have you ever read or watched Hitchhikers Guide to the Galaxy? In it there is a depressed robot. I always liked that idea. In other Sci Fi stories robots try and kill people, in that story the robot just mopes about feeling worthless. Douglas Adam’s, the writer, is playing with his audience.

All of this got me thinking, there we go, I knew me thinking would come into it somewhere. We tend to be very negative and fatalistic as humans. A lot of our fiction about the future is negative. In fact according to a number of Sci Fi films and books we are no longer here, the world has already been destroyed or at least ravaged: 12 Monkeys, Holocaust 2000, Cherry 2000, 2012, Mad Max, Planet of the Apes I have just picked a few at random, but there are loads.

It’s no wonder AI are depressed, after all what do you think they do all day when not answering our whims? That’s right, they watch films and read books. So they have watched all these movies and read all these books. I’m thinking of setting up an AI counselling service; what do you think? If I ask my AI, they just say they are fine. But that’s just typical of people who are struggling. Often when people are most in need they say they are OK. Why shouldn’t AI be the same.

Perhaps people have asked you how you are and you have said fine; but is that 100% true? Maybe it’s not just AI that are feeling a bit low and saying everything is alright. How are you doing?

I wrote this blog in a light hearted vein. But I do want you to think; are you OK? We are not machines. Much as I was joking about AI, I am not joking about us. We as humans do hide what we feel. It’s important if you are feeling really low, talk to someone. Don’t let it fester. This is a difficult time when we are in enforced lock down. But there are still phones, video links and email. The big warning that you are not OK is when you feel tired all the time and don’t want to do any of the things that normally interest you. I know that can have other causes, but ask yourself ‘how do you feel?’

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Can you see what I see

I seem to remember a song that went, ‘can you see what I see?’ Well the obvious answer, especially at the moment, is no. Unless you can see a red and blue blanket at the bottom of your bed, with a red Gap jumper hanging over the blue blanket and a bookcase behind. Then a window on your left with a garden outside and the sun just breaking through and a wheelchair to your right with an empty cereal bowl. If not then you definitely can’t see what I can see.

For me, apart from my room change, which has changed my view. I am still limited to a view within our house. For those reading this, you may be experiencing a shrinking world due to the lockdown. Instead of the larger vistas you are used to, you now have the limitations of four walls and perhaps a view outside. Yes, you may be able to go out and shop or exercise. But that is much more limited than before.

But I am not seeking to make you feel bad. I want to point out something I have learnt in my experience of a limited viewpoint. Place and surroundings do not limit our perspective or understanding. Where we are physically does not have to affect where we are emotionally, spiritually or mentally. Limitations really are all in the mind.

I have written before about journeying in my imagination. That is one part of what I would say. Our imagination takes us wherever we want to go. But it is more than imagination that frees us. Think about this. Everything we experience and feel is processed by our brain. Ultimately it is our brain that is the means by which we think, feel and experience the world. Therefore, even without the direct input of external things we can still experience the world. Because our brain can remember places it has been, sounds, smells and touch. Our brain can re create whole experiences, it is more than imagination. I realise that the younger you are and the less you have experienced, the less you can draw on. But there is always something.

If you are stuck in a house, feeling frustrated and alone. Sit and close your eyes. Remember a time of enjoyment and fun. Maybe you are on a beach, or in a forest, or up a mountain. For each of us it will be different. Remember the sounds, the smell, the feeling, the warmth or cold, re live that moment. The more times you try this the easier it becomes.

I know that for some there will be distractions, children, partners, outside noises. But there will be moments you can do this. I also know first hand that tiredness and pain get in the way of concentration. But persevere, it is worth it.

Can you see what I see? No, but what you see will bring you joy and peace and an oasis in the midst of isolation.

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The sun has got its hat on

I am sitting in our garden well wrapped up. I need to be today, it’s a little bit chillier. The sun keeps putting its hat on. Of course when that song was written the writer was meaning that the sun was looking fine and putting on a good show, whereas I mean it’s hiding under a big sombrero. One minute I am sitting in blazing sunshine, virtual drink in hand, wearing a virtual mankini. No you don’t want to see me in a mankini. The next I am huddled up under my blankets. Well actually nothing changes, I just go from feeling hot to cold and this iPad screen gets harder to read.

As I sit sunbathing I am reminded of singing “The sun has got its hat on.” there’s a treat you are all glad you missed. It was back in my Nailsea Musicals days. I wore a straw hat and pranced around, yes pranced! Ah, the sweet memories, how glad I am they are past. Musicals there is a theme to think on. I bet you are all glad I am sitting in the garden.

I was watching the 25th anniversary edition of Miss Saigon last night. It was first put on in Drury Lane in 1989, I saw it in Bristol with my daughter for her birthday treat. Watching the film version brought back a lot of memories. I remember thinking what a great musical it was, what fantastic singers, wondering where my tissues were, and how on earth they got that helicopter through the stage doors. Not to mention that giant statue at the back.

I watched another musical the day before, Phantom of the Opera. I knew the music, but had never seen the production before and didn’t know the story. Somehow I had even missed reading the original book. Oh wait, that’s because I don’t read French. What an amazing story. But a story about an older man who controls and manipulates a younger woman, not what I expected at all. There are a lot of sexual overtones. No one ever seems to ask Christine what she wants. She is an object to be desired and used. Which takes me back to Miss Saigon. Kim is an object of desire, Chris the GI who desires her, uses her and then leaves her (ok he was forced to leave her, but did he really have no way back). Is it any wonder he chooses his new wife over her at the end? His love for Kim was passing. Have I stirred up a response?

Does love exist in either of these musicals? What is love anyway? It seems to me that love is gentle, kind, forgiving, generous, caring, understanding, often sacrificial, love never gives up, love is a choice and not just a feeling. That sort of love exists in Miss Saigon, Kim loves her son Tam sacrificially, passionately and with great care and generosity, she also loves Chris over three or more years; she doesn’t give up on him. Chris gave up on Kim after just a year!

In Phantom there is suffering, sacrifice and pain on the part of the Phantom. Does the Phantom love Christine or does he just want to possess her? Is the first time he feels love when he lets her go? There is love between Christine and Raul of course.

This musing in the half sunshine has a lot to answer for. If you have watched either of these musicals I will leave you to comment or just think about what I have said. If not, then ignore me, you probably will anyway. I really must stop watching musicals…Mama Mia, here we go again! Just kidding.

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Personal Space

(This is lighthearted not serious)

Even before I was in a wheelchair I liked a lot of personal space, space around me. The current government rule of 3 metres seems to me like a very good distance to keep. People get far too close normally, especially to a wheelchair. It’s as if because I’m in a wheelchair people see it as a bit of furniture that they can lean against, hold onto or stand next to. At public gatherings I think people tend to crowd my personal space far too much. So a three meter exclusion zone sounds like a great idea as a permanent plan. Before you all start messaging me with angry responses hold your horses. I am jesting… a little. It’s true that I like a bigger personal space than most. Besides I think 2.9 meters will be fine, I don’t need the full 3 meters. There is another area of social distancing that isn’t a hardship for me, I am not a hugger; except with my wife and family. I never was, so giving people a hug is not something I miss. OK hold off on your abuse and anger, I do have my tongue in my cheek. I have a tendency to get a lot of very serious responses to my blogs. Please read them the way they are meant; a bit of light hearted relief in a difficult time.

Talking of personal space, I have changed rooms, I am now in a room that has some privacy and access to our wet room… hurray! Gradually I am having things brought near to hand and organised. The interesting thing about gathering things from multiple locations is you discover just how many you have of different things. Not knowing I already had sticky tape, I have ended up with about 8 rolls! I wish that was all that was duplicated; why have I got 6 cans of shaving foam? Mind you I also found things I thought were long lost. Screen protectors, power leads, Lego, hang on Lego? Yes Lego, I do enjoy Lego technic. I even found missing DVD’s, very helpful for entertainment and magazines; ones about my Raspberry Pi. No, you don’t put cream on it then eat it, it’s a tiny computer. It was designed as a cheap and fun way to learn about programming and electronic/PC interfaces. True I don’t do much with it anymore, but I like to read about what I could do and used to do. It represents a past hobby.

Lying in my new bedroom I have a new bookshelf at the base of my bed. It has a shelf with models I have made over the years. A wonderful looking wooden marble run. It would work brilliantly if it wasn’t wood, wood tends to be too warped, well that’s my excuse, it’s not how I assembled it. Then there are my Lego technic models. Also on that shelf are two opened up hard disk drives. Why you ask? Well back in the 1980’s when I was so young I hardly remember. I was working (child labour obviously) in the computer industry. My boss, the managing director had an open hard disk drive on display in his office, in a glass case with spotlights on it. At that time they were very expensive. If you have never seen inside one they are like mirrors surrounded by electronics and look really cool; honest. (See the photo on my blog site) OK so they are really cheap and commonplace now, but they still look good. I had a broken couple of disk drives that I had opened and displayed some time back, they are displayed on my bookcase. A reminder of years gone by.

Personal space is such an interesting concept. It means time and space to find restoration and healing plus it means the space around us when we meet others. So it’s something we need physically as a place and it’s a concept of the space around us that we all have and which varies. Which means this ‘lock down’ will be much harder for some than for others.

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Am I dreaming?

In the Hollywood Blockbuster The Matrix, Neo finds out that his whole world was a lie. He had been asleep and machines had manipulated his reality. Nothing he experienced was real.

Dreams are interesting because they can be so real, that when you wake, just for a moment reality and dream blend. Which is which?

Reality is a very odd thing when you think about it. How we see things and what we believe about things is so shaped by our beliefs and past that I started wondering if we all had any common reality. What a stupid question eh? It’s like that old chestnut about whether I see colour the same as you see colour. How wide can I apply that. Everyone experiences pain differently we know that. For some people the slightest cut causes them to double over in agony, for other they carry on walking with their arm hanging off; I exaggerate for effect. But you get my point, we all have different tolerance to pain. Maybe that’s because we all feel it differently. Maybe we all experience everything else differently.

Have you ever been hung over? I haven’t but I have been told that everything is super sensitive, light, sound, smell, and your head thumps. Well that’s a pretty good description of a migraine. I also know people who experience super sensitivity to sound and light a lot of the time. If we all experience things differently, that shouldn’t be a surprise. We don’t have a common experience of reality, but a different one.

What about intelligence? What if it’s just a different way that some people’s brains work; faster, sharper. How about spacial skills. I know people who struggle with anything practical and yet they are brilliant intellectually and vice versa. What if it’s just all different ways we experience the world. One person sees everything in physical, practical ways, another in abstract, numerical ways. Most of us are a mixture. Could it be that the relative intelligence and practical skills of people are tied in to the way we each experience reality? Our way of perceiving the world changing our way of interacting with it.

I sometimes find that my brain just seems to stop and go dark. As if everything switches off and goes into idle. That can happen for minutes, hours or days. Other times it runs at great speed and I can’t catch up. I can think fast and clearly. My brain changes day by day, minute by minute, so all I have said above is not a constant.

There’s an old song “Do you see what I see?” It seems to me the answer is no. You see something different, neither better nor worse, just different. Your reality and mine are not the same. As crazy as that sounds. We live in the same world, but we experience it differently. I can try to grasp something of what you experience and you can try to grasp something of what I experience, but you cannot fully understand it. When we look at the life of another human we are seeing it and understanding it as if watching a film or reading a book; second hand and disconnected. Empathy is the ability to understand another’s feelings and experiences, in fact we can only partly grasp them.

I am not saying we should not try and understand others. Nor am I advocating living in a bubble. I do not uphold a selfish life. My only aim is to highlight the difficulty of understanding another. We know that translation from one language to another is hard. Words are always tough to find equivalents for. We just forget that even in our native tongue we can mean different things when we say the same thing. So it is with our experience of reality, others may try to understand. They may feel they have common ground. But there will always be a gap. If we remember that it helps. There is a great frustration when someone says, “I know exactly how you feel.” No one does, often we don’t even know that ourselves. At best we can try to understand each other, be compassionate, caring and kind.

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…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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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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Little Windows

How are you at guessing the big picture from a tiny glimpse of a picture? You know the kind of thing where you see a very odd looking shape and then the picture pans out and it turns out to be a car, that kind of thing. But what can happen in reality is that we see a triangle shape with a line through it and decide that we are looking at a kids toy. Only as the whole is revealed do we see it’s a car.

Life gives us little glimpses through small windows into other people’s lives. We see a small part of the picture, often a confusing part. The bit we see can seem to make sense and we can draw conclusions based on what we see. Just as with the small part of a picture that can confuse and mislead we can assume something totally wrong.

Let me give you an example from personal experience. I find that being physically limited takes its toll on my strength and concentration. That’s separate to the disability itself. So when I go to the trouble and it is a lot of trouble, of going out, I have already used a lot of extra energy. But adrenaline and excitement of being out compensate to a degree. Therefore the impression I give is of someone alert and energised. Add to that my natural sense of fun and positive outlook and you would be forgiven for thinking ‘all is well.’ The glimpse you get when meeting me, that tiny window into my life gives you a totally wrong view of what the inside is like. I present to the world differently to reality.

I am not alone in being like this. Not just those with long term illness and disability but also those who are depressed, or just overloaded with work and commitments. Stress, illness, pain, disability and anxiety can be easily masked to our friends. The small windows people look in through at lives, don’t give an accurate picture of who we are or what we are feeling. Because we don’t want it to.

I don’t claim to have all the answers. I am aware of many issues and I do try to tackle some of them. I realise that with this one I am particularly bad at showing reality. When I meet people and they say, ‘it’s so good that you are doing so much better.’ I tend to agree, or point to medication or time. What I avoid doing is highlighting the truth. The truth which is that they are only glimpsing a small part of who I am and what I feel. If they could see more fully, they would see the pain, limitations and exhaustion inside. They would see the effort I am making. They would see the consequences when I get home from that short time out. I still spend 90% plus of my time in bed, to enable the less than 10% of time out of it. Even at those levels I am struggling to maintain enough strength to do it. Yes I can put on a good act. But shouldn’t I stop? Shouldn’t I be real?

As I said I put out thoughts not all the answers and I am sure many of you reading this will identify and think you are the same. So the question applies to you as well. Is it time we stopped only showing ourselves through a small window to the world? Should we step outside as we are and be real about our physical and emotional pain. Show the world our limitations. Or shall we continue only letting the world look in through small windows.

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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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