One thing not to say to a disabled person

There seem to be a lot of lists on the internet saying, ‘x things not to say to disabled people,’ x varying from 5 to 20. Recently there was even an article in the Guardian headed ‘9 things not to say to a disabled person.’

One of those x things on the list seemed to sum up most of the others, it was really about identity. It interested me on several levels. The thing not to say was: “Come to my religious institution and we will cure you.”. This wasn’t about religion per se, but about change or cure. The answer given in the article of why it was a bad thing was this: “For me and many others, this is simply who we are, and we’re proud of our identities. Above all else, we do not want your pity.” I have found many variations on this basic idea in other articles, but this one was in the Guardian by Lucy Webster.

I can give you my take on the above and because I am a full-time wheelchair user myself, I have a right to say it, it isn’t me being discriminatory:

  • Disability does NOT define me.
  • Being unable to walk is NOT who I am.

I understand what would make Lucy say what she did. She is probably fed up being looked down on and pitied, so am I. But the answer is not to say, ‘less is more.’ Or to argue that being limited and disabled is so fantastic we wouldn’t ever want to change. The answer is to say:

  • ‘In spite of the limitations which I have, I am still a worthwhile human being.’
  • ‘In spite of the way you may perceive me, I am complete inside.’
  • ‘In spite of the disability that is apparent I have much to offer.’

You cannot sum up a person by what you see. You cannot understand a person, purely by externals.

The issue then is not whether I accept the state of my body as it is; I do not, I would like to walk again. The issue is whether the world accepts me as I am. Surely that is the case with all limitations isn’t it? We are created to have all our limbs and function fully. When we don’t then it is a struggle; that is just a fact there is no getting away from. Yes, we can overcome and that is amazing, and heroic and admirable, but still really difficult. The key thing is that we are just as worthwhile and valuable as human beings with or without full function. But it is only human that we would choose to have full function.

There is something definitely not to say to a disabled person and that is: ‘You are a drain on society and not worthwhile.’ I think that is what’s behind a lot of these online and newspaper lists. So long as we stand against such atrocious and appalling ideology then, we as a society, have hope. Physical limitations are just that, limitations, and like all limitations, they can be overcome with ingenuity and equipment. Remember the person inside is what is important and no matter how they appear outside they are worthwhile and valuable.

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The illusion of fame

Cream floats to the top. So does scum of course and rubbish, flotsam and other detritus. When you look at some parts of the upper echelons of society you can see the reality of that. But you also see it with fame and celebrity. There was a time when I assumed that film and TV stars were all skilled, creative and high quality; not anymore. There was also a time when I looked up to authors, film directors, singers, song writers, artists and various other creative talent as being worthy of their place at the top; not anymore.

We seem to be living in a time of mediocrity. Where someone unpacking a box on YouTube can become famous with millions of followers. Where celebrity is to be known for being known rather than any ability. I am amazed when I see the ‘celebrities’ that are trundled out for chat shows, reality TV and game shows. Most of them don’t even know each other; no surprise there. I spend the first part of such shows listening in awe to what they are ‘famous’ for. Who knew that playing a game online was such a celebrated thing, or that just being filmed because you were born into a rich family makes you special. As if the chance of birth were something we do and achieve. Perhaps my favourite twist on ‘celebrity’ is becoming a celebrity for watching TV and being filmed commenting on it. Yes, I know, journalists made a living out of that for years and became famous. Although I think they may perhaps have trained in journalism. Now just being brought up watching TV and having an opinion qualifies you.

I realised the other day that many of the so-called classic books, films and pieces of art would not even get a second glance today if they were new. Some of the greatest authors in history would not be accepted by publishers because they aren’t ‘on trend’ or they lack ‘what the public are looking for’. But great genius has led the way in the past. Now we seem to be in a time of consensus and agreement. If the public like it, then it must be good.

When you consider that premise, that the consensus is the way we should judge what is good, we are really in a mess. If society had always operated that way, we would still be in the dark ages. Because no one would have listened to enlightened visionaries. If we had always operated that way then ‘the flat earth society’ wouldn’t just be a bunch of lunatics, it would be all of us. If we had always operated that way then medical science, in fact science of any kind would not exist. Because consensus of public opinion was against it. Since when has consensus of public opinion given us the best way forward. Surely, we have always looked to invention, innovation, genius, insight, creativity and talent to take society into new and better places. Consensus has followed creativity in the past, not lead it. Creativity by its nature is new and vibrant, changing, challenging, testing. It pushes out of the confines of the ordinary into new areas. It thinks outside the box. Creativity is beyond the everyday. Creativity is a key part of genius.

When we start to accept that mediocrity and the everyday are to be held up as talent or seen as creative, then we have missed the point of what talent and creativity are. When we see creativity as accepting the mundane and day to day then what has life become?

One advantage I have spending so much time in bed, limited and ill is the time to think. I see what is around me and sometimes I despair at what I see. We need a rallying cry for people with real talent, creativity, ability and genius to come forward. We need to stand up and say to the publishers and media giants that what we want is not more of this trite rubbish you are serving. We don’t want books written by people whose claim to fame is being on YouTube or TV. We don’t want films that re use and churn over what has already been done. There is creativity out there, use it, find it. Then we won’t need to remake the past, because the now will have its mark to make and we will applaud that. We will again experience what it is to see true talent, creativity and genius at work.

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Turning the world upside down

When I wrote this, the rain was hammering onto the bird table roof, glistening drops of water hanging all around its edges. I could see almost horizontal sheets of rain blowing across the garden. The sound of raindrops on our conservatory was like an army of marching ants in tin boots. Wind was blowing the trees, bushes and grasses in a wild dervish. We had been back home for just under an hour and I said to Mary, “I’m glad it wasn’t raining like that when we were out.” We got wet, but not that wet.

The rain then stopped, and the sun shone.

One thing we know about in England is the weather. Have you noticed how many words we have for rain, it’s drizzling, damping down, torrential, pouring, hammering, misty, cats and dogs, the heavens opened, I am sure you know more. What’s our opening line in conversation? It’s always the weather. “Hasn’t it been hot lately?” “When will this rain stop?” Did you see that lightening?” We don’t just talk about it we complain about it. When it’s hot, it’s too hot, then next week, it’s too cold. Then we get too much rain, followed by, yes drought. If it’s sunny it’s too sunny, if there is snow it’s too deep, or too slushy, or too icy. I don’t know I have ever heard someone say, “the weather today is perfect.”

The reason that’s important is because it’s about attitude. We look at how things are not, rather than how they are. OK, I was trying to say, “the others man’s grass is always greener in a new way.” It’s why we want more of everything and what others have. It’s also why when we are well, we don’t appreciate it and when we are ill or limited, we focus on what we cannot do, rather than what we can.

We need to turn our view upside down. Turn the world upside down. Rather than look at what we want, look at what we have. Rather than what we cannot do, look at what we can. Frustration only takes hold when we try to do more than we are able or want what we can’t have.

Let me be down to earth and practical here. I spend a lot of time in a hospital type bed and the rest of my time in a power wheelchair. Most things must be fetched for me or done for me. So, I have found some things I can do and focus on enjoying those. I can write and I can use a PC. By using my good times when I have the energy to do those things, which isn’t all the time; I can have fulfilment. It gives me a sense of achievement, joy, and worth. Instead of lying around feeling useless I have found something I can do for a few hours a week. This is directly applicable to you too. There will be something you can do in every situation. Whatever our limitations there is always something. I can say that confidently because I have times, I cannot move anything. In those times I use my imagination and go on journeys in my head. Find the joy, the what you can do. Of course, if you are reading this and you are 100% well and strong, that’s great. In my experience you will still find things to be frustrated over, so same goes for you. Focus on what you can do.

We can just focus on the weather, moan about it, shelter from it, get wet or enjoy the beauty of glistening rain drops. Ski in the snow. See beauty in fallen leaves, you see where I am going with this? We could feel frustrated about what we do not have, or cannot do, or we can decide to find out what we can do and enjoy it.

Turn the world upside down. Look at it in a new way. Transform your viewpoint. Change your perspective. What can you do?

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Hope comes in the morning

A quote from ― C.S. Lewis, The Lion, the Witch and the Wardrobe

 “I hope no one who reads this book has been quite as miserable as Susan and Lucy were that night; but if you have been – if you’ve been up all night and cried till you have no more tears left in you – you will know that there comes in the end a sort of quietness. You feel as if nothing is ever going to happen again.”

Some nights just seem so dark, some days for that matter. Can you identify with the quote above? I can, I have been there, cried out, dried out my tears. Had that feeling of emptiness. Often, we say that, ‘Hope comes in the morning.’ Or ‘you’ll feel better in the morning.’ But that isn’t always true. Sometimes things feel as dark when we wake into the bright sunshine. Hope still seems as far away. Tears just keep coming and they do not dry up. I am writing this for all of you, because I have been there, I do know what it feels like. It is a place I know.

Despair is the most awful feeling of all. That sense that nothing will ever be the same again. Life is meaningless and empty. The very light goes from around and within us. Even when standing in brilliant sunshine, we are in darkness. Even when surrounded by friends and family, we are alone.

It’s no good me saying you will feel better. Things will improve. Light will come. Pain will cease. Because you won’t believe me. I would not have believed myself when I was in the darkness. There is a word bandied around that has lost it power and meaning through overuse; ‘faith’. Whatever I say, you will have no ‘faith’ in those words. They will be trite and meaningless.

‘Faith’ is to ‘put our trust in’, ‘put our weight on’. The reason that anything I say about hope and the future is ultimately empty is that you have no ‘faith’ in me. You cannot put your whole trust in me nor lean your whole weight on me, I would collapse under it. The same goes for your friends and family. The same goes for tv personalities, stars, gurus, writers, experts etc. People collapse under the weight of our expectations. If you want to be able to ‘put your weight and trust’ on something or someone, then it must be up to taking that weight and trust.

There is only one place to turn that is up to the job, and it is where CS Lewis turned; God. Because faith can only have meaning and power if it is faith in something or someone that can bear it. I want to make two asides here:

1/ Don’t switch off to truth because you think, yuk religion. This is about ‘faith’ not religion.

2/ I trust in God, but I am not claiming that makes things simple or easy. I am not being trite.

How do you go from a place of absolute darkness to a glimpse of hope? That bit is simple. God is always waiting with open arms. He sent Jesus Christ into the world so that we could be rescued. As it’s recorded in the Gospel of John chapter 3 verse 16:

“16 God loved the people of this world so much that he gave his only Son, so that everyone who has faith in him will have eternal life and never really die.” (Contemporary English Bible)

You see not only is God the only one who is able to ‘bear the weight’ of our expectation and is worthy of our trust. But he is also ready and waiting with open arms so that as we turn in ‘faith’ to him, he has already turned to us. If that sounds too ‘religious’ to you, then you have a very different view of religion to me. It is in fact the only hope and future that we really have.

Hope does come in the morning even when we cannot see it. God is there waiting for us. For those of us who already know him, we can still suffer despair. As I said, life isn’t simple just because you have faith. The Psalmist talks of this in Psalm 6 verses 6-7:

“6 My groaning has worn me out.

At night my bed and pillow

are soaked with tears.

7 Sorrow has made my eyes dim,

and my sight has failed

because of my enemies.”

The difference is that when you have faith in God, and you are in desperation and tears, then you know where to turn. In turning to God through Jesus we are assured of hope and peace. See Romans chapter 5 verses 1 & 2:

“Therefore, since we have been made right in God’s sight by faith, we have peace with God because of what Jesus Christ our Lord has done for us. Because of our faith, Christ has brought us into this place of undeserved privilege where we now stand, and we confidently and joyfully look forward to sharing God’s glory.”

If you have stayed with me to this point then I have two suggestions:

1/ If you already have faith in God, keep on going.

2/ If you don’t, then turn to him. Or at least investigate further. Check out a free Alpha course:

Hope really can come in the morning.

Nearly there, keep going

We were coming up the drive of Cleve Hotel and Spa the other day and I was again taking note of their signs. “Nearly there,” and “keep going.” Of course they are to encourage you to continue on to the coffee shop, a very worthwhile place to carry on to. But it got me thinking, a very bad habit Pooh bear, as Piglet would say. Life feels a bit like a race, then when you have an accident or illness it’s as if you have tripped over in that race. Lying on the ground you watch the other racers speed by you, even the very slow ones. All those people you passed years ago, or moments ago, hare past you and disappear in the distance. It’s very disheartening and frustrating. You might feel dispirited. Even if you don’t feel you were competing in your life, you probably identify that feeling of life passing you by after an accident or illness. That frustrating feeling that you can no longer do or achieve what you once did, your old plans are destroyed.

Lying on the race track of life, looking at legs that no longer work as they once did, you can struggle. For some you might be able to stand and hobble along a bit, for others aids enable some progress. But the race seems un winnable. It’s all extremely frustrating and difficult to cope with.

Then you notice the signs all along the side of the race track of life, signs that read “nearly there.” and “Keep going.” But how can that be? The winning line is a long way off, everyone else has left you for dust. There is no way to reach the end. Then you realise the answer, it involves a paradigm shift in your point of view. Your winning post has moved. You don’t have to chase the crowd. You don’t need to follow your old path. Every step is now a win, every move you make is a victory. Each time you achieve something you have beaten the odds. With every new day that you get up and face the massive obstacles now in your path, you are a winner. The obstacles that just living put in your path make the very act of living a victory.

So this is my encouragement to us all. Keep going, not to your old goal, not to where you were going. Just keep going. You are not only nearly there, every time you struggle forward you arrive; you win, you are a winner. Well done, take courage.

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I did it my way

One of the verses of My Way, made famous by Frank Sinatra:

I’ve loved, I’ve laughed and cried

I’ve had my fill, my share of losing

And now, as tears subside, I find it all so amusing

To think I did all that

And may I say, not in a shy way

Oh, no, oh, no, not me, I did it my way

Don’t we all love to have control and do it our way?

I have been learning to write screenplays for fun. It’s a natural follow on from my love of writing. Having found a free online course, which was every bit as amazing as you’d expect for the money, I learnt one new thing. What do you expect for nothing? I thought I did well to learn anything on a free course.

Are you on the edge of your seat yet waiting to hear what I learnt? You’ll need to hang on one second because I need to take you back a step. All fiction stories have protagonists, or as they are often called heroes/heroines. These main characters have to want something for a story to be interesting, but not just want something, they need to be blocked from getting it. Sorry if I have spoilt all your favourite stories.

Think of any fiction story. Let’s take Star Wars as an example, Luke Skywalker wants to fight the Empire, but he has to stay on the farm, the storm troopers kill his family and he joins the rebel alliance. Ok I know it has more twists and turns. That’s because a plot has more to it than I have said. But the basis of all plots is a character wants something and they are blocked from getting it. Now I can tell you the new thing I learnt, drum roll please…

It’s about how a character overcomes the blocking. By the way, the character will be blocked repeatedly. The thing I learnt is to make a story satisfying, the character/hero/heroine needs to overcome the main blockages themselves. In other words not everything that blocks their path can just fall away by chance, nature, or other people’s work. That wasn’t very exciting was it.

In my example it’s the storm troopers who kill Luke’s family and initially free him to start on his path. But most of the blocks he overcomes himself. That feels more satisfying to an audience.

What on earth has this got to do with disability? It seems obvious to me that the thing you lose with disability is control over your environment and to a degree a sense that you cannot control your destiny. Immediate control of your future is definitely impeded by disabilty. How does that relate to movies and fiction? It relates because of the reason we feel satisfaction when a hero/heroine takes control and overcomes the obstacles in their path. It’s because we all want and need to feel a sense of control. So much is out of all of our control. We are limited by our physical strength, our intellect, our background, our finances, so health is just another greater limitation.

Think about your own situation. This will depend very much on where you are and where you are from. Are you bright, strong, healthy? Did you get a reasonable start in life? Do you have a strong mental attitude? These starting points are not in our control, they are how we are born or at least a product of our upbringing. People who are unintelligent, weak, mentally ill, or have a bad start in life didn’t choose that. Then what happened next for you? Was your schooling helpful, do you learn well? Or are you naturally intuitive and have a good business brain? Again these things are not totally our choice, we have more choice about them, we can develop them, we can concentrate at school and try hard or use our gifts. But we don’t completely control them. Then what about now, where are you now? Did your background and start in life translate into a good job and prospects? Were you knocked off track by something?

At any point in the process I have outlined above illness, accident or disease can strike and knock you off track. I was rapidly rising in a company when I was first ill. All my planning and hard work were knocked for six. Control is very much an illusion that is broken the moment a major life event crashes in.

We all like to sing that song “My way.” Which I quoted age the beginning. We sing with gusto because we like that image of controlling our destiny. But the reality is that life is a fragile thing. Illness, accident and even death come out of the blue. Our life can be changed suddenly and completely. The control we thought we had is shown as an illusion. The real reason we so love fiction stories and films is that it’s escapism, life isn’t like that. We know it, we feel it, but we want it to be. Whenever a movie hero overcomes a great obstacle we all shout “yes” whether out loud or in our heart, because they are living the life we want. Overcoming the impossible and taking control of their lives.

In the end I have found that the best way forward is to learn to cope within the limitations. When I was a child I used to love going into the sea on a stormy day. The waves crashing into me were so exciting. But if I tried to stand in their path, they always knocked me off my feet. Then I discovered there were two ways to prevent that. The first was to float on the water, so that I just floated over the waves. The second was to dive into them and through them head first. Life is like a great big stormy sea sometimes. If we try and stand firm against the waves we just get knocked over. But if we lay back and relax into the situation, accepting it, we float over it. Or if we face it head on diving in, we break through it. The way you face the waves of your troubles will depend on what they are and your physical strength. For me in my weakened state floating over the waves is my best course.

My way is to go with the flow. Your way is up to you.

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