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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Why are we so gullible?

You’ve all seen the posts on Social Media and on your mobile: Why is this game so hard? Only 10% of people can see this picture. Only 2% of people can score over 50% on this test. Etc, etc, etc. Of course the game isn’t hard and you are looking at it thinking, ‘it’s not hard to me, I must be very clever.’ The picture is obvious, so you’re thinking, ‘I must be special, I can see it.’ The quiz is easy so you score 99% and feel great. You are being manipulated. Why are we so gullible? What is it about Social Media in particular, but wider into games for our mobiles, that makes us so gullible?

I know that all these things are advertising ploys and I have always known that. I used to work in marketing many years ago. I understand some of the methods. But I can still feel good if I see a picture instantly that I am being told is hard, or spot a number sequence supposedly hidden, or get a high score in an easy quiz. I guess the reason is that it’s still satisfying, even if we know we are being duped.

When we go into an arcade and drop coins in one of those push and shove coin balance machines. We know from experience that we will never get as much back as we put in. But we still enjoy it. When we watch a really obvious murder mystery on TV and guess the murderer who may as well be wearing a sign announcing the fact, we are happy to have worked it out. When we watch a simple TV quiz and shout out the answer, we feel good about ourselves. It isn’t the level of difficulty or ease that always brings most satisfaction.

It seems to me that the reason is we enjoy solving mysteries and puzzles however simple and obvious they are. It’s as if we were created to work things out. Often in our day to day lives things can be mundane and repetitive. Jobs can have an expected pattern. Routine can become dull. We lack challenge. For me in a limited state, lying in bed most days that can be even more so. I find there is no challenge or fun to be had in watching TV or steaming media. Watching movies and TV series is extremely passive. I need a puzzle to work out. Something to activate my brain. But it has to be within my limitations. Often that means I just do actual jigsaw puzzles on my iPad. Sometimes I can put things together on my lap tray. At other times I can write or edit video. All these things act as a challenge, a puzzle which tests my brain and bring satisfaction.

If you are in my situation, limited in bed or a wheelchair. I am sure you find similar things to do. Whatever you do, don’t just stare at a TV. That way your brain is idle and it will not help your mood or mental health. Whenever you are able, for as long as you are able, find things to challenge your brain. You will feel better if you do something that has an element of puzzle however simple.

Getting back to my opening question, why are we so gullible? It’s because we enjoy puzzles, any puzzles however simple. We want to find amusement in different things. Advertisers and game developers know that and play on that. In one sense there is no problem with that. But don’t be fooled into believing the lie. You are not above average for answering that quiz, you are not one of the few who sees that picture, you are not super brilliant seeing that number pattern. However, you can have fun. You will benefit from stimulating your brain, by the way I do not mean your IQ will increase or you’ll stave off dementia. I know some games claim that. But you will benefit by feeling better.

1, 2, 3, 4… only 2% of people know what comes next.

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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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The three essentials

I have noticed that most TV series and films have three essential elements. They appear at various points, but they most definitely appear.

1/ A section of dramatic rousing music with time spanning action.

2/ An inspirational speech.

3/ A round of applause. Mainly at the end, but not always.

Well you can save your round of applause for the end of this blog. It’s difficult to do visuals or action on the written page. But I can most definitely do inspirational speeches.

Here we go:

“There are days in our lives when we must decide. Days when we are challenged. Days of adversity and strife. There is a moment to be firm. Strong against a storm. We do not see that day coming. We may not choose it. It is not an easy day. But come it must and come it will. That storm, battering against our resolve, hammering at our will, wearing down our resistance and hope.

Do not give in, do not give up. If we are strong now, we will win. If we are resolved in our minds to stand firm, firm against the battering wind, firm against the storm, firm against the adversity, we will be victorious.” (You almost got up and went forth to do something, if only I had indicated what.)

Then there is another type of rousing speech. Not triumphalist like the one above, but one that inspires hope, charity and good feelings. Let’s have a go at one of those:

“As I look back at that time, I see beyond the hunger, to the community and love. In the cramped, cold rooms we huddled together and found a common purpose and hope. Our lives shared not just pain but compassion. There was a sense of belonging that came from knowing we were together in our difficulties. We did not choose to be poor, but poverty moulded us into who we were.” (What a pity that such speeches almost suggest that poverty and pain are a desirable start in life.)

Then there are the eve of battle speeches:

“Many of you were just trainees when we started out together. Who could have known then that we would be here, now, on this night, waiting in expectation of an end to this war. We have a chance, a decisive and final chance to end it. But we must act swiftly and strongly. I am asking you something very hard, but it is no more than I ask of myself. Fight through to the end. Take courage and strength from this fact: we are one. They have not defeated us. They will not defeat us today. We will be victorious if we stand together and push through. In our unity, is our strength. We will never be defeated as long as one of us is left standing. Forward into battle, one people, one purpose, one goal, victory is ours.” (Don’t worry I am not calling for a real war, this is an example speech of the type used in movies.)

Then finally there are the love story speeches, romances. Oh no, not the comfy chair. Not the cuddly sweet speeches; yes:

“Moment by moment you have changed my life. Piece by piece rebuilding it. I no longer know where you begin and I end, it’s as if we are one. My heart beats in rhythm with yours, my very breath is mingled with yours. I heard about an old fable where one partner searches the world for the other part of himself. But that is not how it is. You are not the other part of me. It is as if I have found myself in you. The completeness of who I am meant to be, expressed through our togetherness. There are many things in the universe that reflect our love but one which seems to express it well is the way that light shining in darkness transforms it. Colour and form are apparent which were hidden before. Depth and vibrancy sing out. Our love is like that.” (All the old chestnuts eh)

So what has all this to do with disability or illness; absolutely nothing. Although I am sure someone will see a link.

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To boldly go

I was watching Star Trek the other day. Well actually I watch it quite a lot. I am not a Trekkie, I just happened to have watched every Star Trek series and film ever made and I know a lot about it. I don’t dress up and go to conventions. Live long and prosper, where did that come from!

Anyway when I was musing about it; as you do. It occurred to me that Star Trek is boasted of as a series about a time in the future when humanity has evolved to no longer have basic needs. No more hunger, disease, poverty or need of money. Humans don’t wage wars or desire after selfish things. Ah, the wonderful ideal of it. If only it were true. It’s not by the way. Any Trekkies reading this will be beating a path to my door with phasers on stun. At least I hope they are on stun.

Let me explain; humans on Star Trek fight aliens and indeed each other. They still have basic needs like disease and hunger, even on earth. They are most definitely motivated by selfish desires and that old fashioned word ‘evil’ is very much evident in humanity on Star Trek. Wars are waged all the time.

Why is this relevant to real life and illness/disability? Because we tend to strive as humans towards being better. Improving ourselves; but very often we fail. I am aware that we are living in a very selfish time. One when our own needs Trump, oops trump those of others. The needs of others are very unimportant compared to our own. So a series like Star Trek would appear to set a standard for how we could be. In reality it is a mirror for how we are.

One of the big things in Star Trek is ‘The Federation’. It’s an interplanetary alliance. Many planets working together in harmony. Well that was Gene Roddenberry it’s creators idea. Actually in the more recent series, which are set earlier in time than the first series. (Are you with me?) The planets are not in unity. There is dissension and disunity. Even on an individual planet, like Kronos The Klingons are in disunity. Whoever wrote the current scripts are reflecting our times. We are not getting more unified as human beings, but more fractured.

The current state of society is further reflected in the violence and aggression within the series. Distrust of other species, in their case actual aliens, in our case other nations. There is even a reflection of the way some people look at disability and illness. In Star Trek a disease or condition that cannot be reversed or fixed is treated with wariness and suspicion. In many cases their fear turns out to be justified as the storyline makes the new illness ‘evil’ in some way. That’s not true in real life, we just act that way.

It’s almost as if Star Trek is a parable of our society. I should be writing a thesis on it rather than a blog. Actually there are probably courses on the subject and many doctorates have probably been awarded on the subject. Fancy being a doctor of Star Trek studies. A real Dr Spock and not a childcare specialist.

Do take this blog with a pinch of salt. I was being light hearted.

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