Hello From Hospital

Just woken up from surgery.

Just woken up from surgery.

 

If you’re wondering why it’s all gone quiet in the world of Mik it’s because I have had to go into hospital. Yes after nearly two years of battling an injury I picked up at the Paralympic Games Opening Ceremonies, it was decided I needed to have an operation to fix it. So in late April I came into the Royal National Orthopaedic Hospital in Stanmore to go under the knife. I won’t bore you with the gory details but I am still here as May comes to a close. Hopefully I will be going home at the start of June, but will still need a little while spent recovering before I venture out into the world again.

So the Scarlet news will be lacking in dramatic action for a while. All I will say is I am healing nicely and so far everything is looking very good for a full recovery. Which is fantastic!

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Sick Boy’s Thought’s from a Sick Bed

Sick Boy Collage

Sick Boy Collage

Well it’s been a crap week. Last Thursday night I went to bed with a pain in my left hip. By the morning an injury I incurred in 2012, during the rehearsals for the Paralympic Games, had flared up. In fact it later transpired it was infected and by the evening my wife had to battle to get an locum GP sent out. The infection was spreading at a dramatic rate and we were both scared. When the GP arrived, he said we were right to panic and if we had left it until the morning, as we had been advised by the 111 operator, things might have been very serious. Oh dear. So I have spent the last week stuck in bed, pumped full of strong antibiotics, unable to do anything much. Luckily I write as part of my job and you can do that from a sick bed, so we aren’t heading towards poverty just yet. What has amazed me during this whole process of fighting to get my injury treated is how differently I am treated due to my being disabled.

It started with no one believing I could actually feel how much the injury hurts. I have no idea why I would lie, but doctor after doctor found it hard to believe that someone who uses a wheelchair can feel anything below their waist. The incredulity I faced about having sensation in my lower body is nothing compared to the reaction I got when I said I worked. This seemed to be unthinkable, even to my GP who should know my personal situation. I have had to start explaining the hourly, weekly and daily rates I charge to make my medical team understand that my job is not a hobby and that they do really need to to get me back to being able to work full time as quickly as possible. Crazy isn’t it that at a time when the government is pushing the idea of disabled people working more, those of us who do are treated by employable by society?

Another big issue is that I have to keep letting people down. I have had to cancel job after job, booking after booking and so many appointments I have lost count. Sure it’s all costing me money, but it is damaging my reputation too. I try my hardest to be a reliable professional whose word is his bond. If I say I’ll do something, I do it. I just can’t live up to that right now. Not only will my health deteriorate if I try, but if I did venture out of the house I doubt I’d make it through to my car, let alone through a day of work. It really is that painful. So if any of the people I have let down, and those who I may still have to let down read this… I am really sorry.

This is something that my doctors just don’t understand. It’s not only the money, my reputation is vital as I work in a cut throat industry. If I don’t do something someone else will. Once a chance has passed, it gone for good. It’s not like having a real job, with it’s sick leave and sick pay. As a freelancer, every job is vital, your reputation is king and there will always be another person who can do your job. Yet all I hear is just rest, stay in bed. As I have no real idea of the time it is going to take to get better, I have no idea if I should take bookings or not.

OK, this is all very woe is me, and having just read it back it is VERY woe is me but I just wanted to put it out there. Not sure what it is, or why I wanted to write this, but then I have been cooped up inside for over a week. A week when the weather finally broke, the sun shone and I had a full diary. All I do know is that to anyone I have let down, or who I will let down as I get better please accept my apologies. If I can I will be there, if not I owe you one. If you are a doctor, nurse or other medical professional please remember that disabled people are all different. Some can feel, some can’t, and some work, some don’t but whatever their personal truth is they need to be treated in exactly the same way they would be if they were not disabled.

OK, that’s enough misery. Normal service will be resumed soon. Bloody better be soon or I will pop with frustration and boredom. ARGH!

On a positive note, I’ve lost loads of weight! Always a silver lining for an ageing Goth!

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Right to Die? Right to Live is better!

Yet again the press is filled with the story of a campaigner who are going to court to end the terrible suffering of their life as a disabled person. This it is Paul Lamb who is claiming that his life is should be ended at the hands of the medical profession, as he feels he no longer wants to go on but is too disabled to end his life himself.

I am so saddened that another person feels that they have the right to even consider taking this case to court, whatever their disability or condition. I keep hoping that our society will start to see that if we do go down this road, we are starting out on a very slippery slope. Once the law has been changed to allow doctors and medical professions to assist a person to die, where will it end? I know from own experience that some doctors see someone like myself as having a “poor quality of life”, no matter how much I have tried to make them see how wonderful and fulfilling your life can be when you are disabled.  But we never see that anywhere in our media, not even when the Paralympians were going for gold. It’s always how amazing we are in spite of our disabilities, not thanks to them. And you never see anyone who feels like me, that becoming disabled was the making of them. The constant barrage of  negativity creates a stereotype of disability that feeds into the psyche of everyone, especially those people who suddenly find themselves with a new level of ability. Something that is really important about Mr Lamb’s case is that he is not terminally ill. No he has a static disability, and therefore is not being “saved” from a ever growing level of illness or incapacity but rather from his feeling that things just cannot get better for him and people like him.

I know, as while I have been disabled from birth, when I became a wheelchair user at the age of 15 I really thought my life was over. I just couldn’t see how I would live, work or find love. I imagined the kind of life which Mr. Lamb describes when he talks about his own. Yet this is not what happened. Instead, with the support of  family, friends and many others, as well as taking advantage of all of services that the state provides, I began to build a new future for myself.  Within a few years I had started out on the road to becoming the man I am today, with the amazing life I live. I now look back on my newly acquired level of disability as a truly positive thing, the day my life started for real. I truly believe that everyone could learn to feel this way, if they were given all the assistance, guidance and support that is required to help people come through what is a hugely difficult process.

This is what Mr Lamb really needs. Not a change in the law that would open a can of worms for all of us, whether we have a disease, disability or are elderly… or eventually squinty, ugly or just undesirable. No he needs help! From watching his interview on the BBC earlier this evening, it is obvious to me that he is depressed. Not only is this a normal effect of learning to live with a  disability, and I myself went through a serious depression early on in my life on wheels, but it is also caused by chronic pain, another issue that Mr Lamb complains of suffering. Yet again this is something I fully understand as I also have long term chronic pain  as part of my disability. So I really do understand why he feels this way, but I just can’t support his quest for assisted suicide. I would instead want to see a campaign that ensured that people like Mr Lamb were supported to have the kind of life he wishes he could have, which is possible no matter what society might believe.

We must stop always focusing on the negative stories of the very few people who are finding it difficult to cope and instead expose the myriad of positive stories our there of happy, contented disabled people. It will be of benefit for all of us, disabled or not, and will go a long way to changing the lives of so many people who are having such problems with building a new life after coming to a disability. The thing that saddens (and worries) me the most is that this campaign coincides with the big government push to cut costs and services. To me this is not by accident. Why spend all that money on creating a society that ensures that disabled people can live fulfilling, happy, independent lives when you can assist them out of this world and save all that lovely cash for the fit healthy non-disabled? Combine this with the terrible way disabled people have been portrayed as drains on society or fraudsters and it is a perfect storm for this story.

So please, everyone who reads this; stop and think. Next time you see someone begging to be “put out of their misery”, no matter how much you might buy into the stereotype that this must be the only human thing to do, please understand that you are entirely wrong. The only true act of humanity would be to stand beside them, support them and help them through on their journey to a new understanding of what is possible for someone with a disability. If we all fight to create a world were that is the reaction to seeing people in Mr Lamb’s position then not only will they benefit, and thus become less and less common, but so will we all. Because at the end of the day the fear of how people would  cope if it happened to them fuels the public support for this campaign, and of course all non-disabled people are just disabled people the day before the accident or illness hits them. So if we could remove that fear and instead start living in the knowledge that we would all be helped to create a new, and possibly better, life, then the word “disability” would no longer have all the negative connotations that are currently associated with it.

Being disabled should never be considered a reason for a person to be put down. I just hope that one day being disabled will be something that people feel  proud about. I know I am… very.

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Good news: Big Smiles and No More Mr Grumpy!?

Baby Mik, during my treatment for cancer – the spiky hair was caused by the chemo!

Today has been a good day. This morning I had an appointment with a surgeon, who gave me the great news that I don’t have cancer! “What’s this?” I hear you say. Yes, for the past few years have been suffering the joys of undergoing a series of tests to find out if I had the big C. I don’t want to go into what the symptoms were that gave rise to this need to check whether the disease that I beat as child had reared it’s ugly head again, but anyone out there who has had Mr Cancer come to stay in the hotel that is their body will know that from the moment you are given the all clear and Mr C has been evicted, you live with the fear that this unwanted guest may return at some point in the future.
The bastard thing about cancer is that you are never told “You’re cured”. Instead you are in remission, and even though I was given that news so long ago (41 years ago when I was only 5) that I don’t remember it happening the fact that the disease that is so feared by everyone might come back haunts my every waking hour… and some times my dreams too. I am sure this is the same for other members of the cancer survivors club. Every time you feel ill or have a strange pain you become terrified that the cancer is back. I know I have spent my adult life thinking that any cough, twinge or cramp is the first sign of another battle with my bodies inability to reproduce it’s cells. I must admit that it has made me a bit of a hypochondriac, if a quiet one. No, instead of vocalizing my worries I quietly pop off to the GP’s and get myself checked out. Of course the fact that I have beaten cancer already tends to make them panic a little too and the tests start over again. 
The annoying thing for me is that every time I have a major issue with my health, such as my spinal collapse when I was 15 or my recent spinal hassles after my car accident in 1999, my surgical team get really panicky and send me off for a series of “routine” tests, as if I don’t know what is going on. Nothing sets off alarm bells like surgeons being secretive. When I was 15 I was actually told that my cancer had returned and I was going to die. After spending 24 hours laying in bed thinking of all the things I’d never get to do, my chief surgeon popped by to tell me there’d been a mistake and I didn’t have a tumour. I know that this experience really effected the person I became and made me enjoy my life, but it also forced me to face what it might feel like if the cancer ever did return. So every time I get the feeling that something is wrong, I relive that day. Of course I do it alone, as admitting what is going on would be admitting weakness would it?
I am so obsessed with keeping my fears quiet that even my lovely wife didn’t appreciate my feelings and so as I sat waiting to get the results this morning I ended up snapping at her about why I was so grumpy recently. This is why I am writing this. I feel so crappy about being Mr Grumpy that I felt I should put out there the feelings that I am sure many other cancer survivors carry with them, and tell the world that those of us who have beat the C can, on occasion, be right moody. I know that over the last few years, and many other times in the past, I have been a right unbearable git on and off. Short tempered with a short fuse. At the minute I am rehearsing for a role in the Paralympic opening ceremonies and I have not been the joy to work with I would have hoped to have been. Of course everyone would totally understand if only I told them what was going on, but that is just not part of the process. Not only does anyone hate the idea of being thought of as ill or weak, but it’s especially difficult if you still don’t know what tomorrow might bring. It’s just you have that “feeling” that something is wrong and everything else seems to get on your nerves. You really are forced to appreciate your mortality way too regularly and this makes everything that impacts on your life unacceptable. Thus your ability to cope and patience disappears. All that happens is you annoy everyone around you and come across as a totally f**k head.
So with today’s news I feel I should apologise to my wife and anyone else who has been at the sharp end of my moodiness through out my life. It might sound like an excuse, but I know that I feel like a weight has been lifted off my shoulders today and I hope to be a happier, smilier person from now on. Well as happy and smiley as a git like me can be. I hope you can forgive me if I did have my grumpy hat on in the past? I promise to try harder next time I get the fear, but don’t hate me if I don’t manage it. My past track record doesn’t give much hope I feel.
To anyone else out there who is going through this at the minute, whether you are waiting for results or know someone who is, I wish you well.
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Sill Ill

What a crazy month March has turned out to be. I had planned to write my second travelogue, about a recent weekend away in Penzance, but I will save that for later. Instead I wanted to write something about why March has not been a high point of 2012 for me so far. Last week I attended a conference for Disabled Workers up in Manchester, and gave a speech about my experiences in the media. I think it went over well, and it was great to meet so many committed and passionate disabled people, all keen to help each other ensure that the work place is a friendly and accessible place for all. While I was there I started feeling a bit unwell, and when I got back home this continued. By the start of this week I felt very, very unwell and went off to visit my GP.

It transpires I have a serious infection. Now over the past few years I have been treated for a pressure sore, which it turns out was actually this infection in it’s early stages, so I think you can all guess where my infection is. Yes I have a gammy bum. Nice. I was given antibiotics and told to rest. By Wednesday this week I was feeling even worse and so I went off the the local A&E. The whole experience really showed how much the medical profession still see disability through the medical model. Obvious I suppose, but it does lead to some serious mistakes. I mean my GP has been treating me for a pressure sore for ages, as wheelchair users get pressure sores, and didn’t even think that it might be something totally unrelated to my disability that could be easily cured by some pills. At the A&E I found myself trying to explain to a series of doctors that I could feel parts of a lower regions, I had full use of my bladder and bowl and that my condition was a very rare. I am one a very small group of people to have survived the cancer I had as a baby, and the treatment I had led to side effects that effected even fewer people. Like just me. So all of their experience of wheelchair users, and paraplegia is useless when dealing with me. Of course try to make doctors understand this is next to impossible. How can a patient know more about medicine than they do?

But before I go off down the road of another rant about doctors and disability, I must stop myself. For this is not what I wanted this blog to be about. Instead I wanted to talk about the way I am feeling while I lay in bed, pumped full of super strong antibiotics watching day time TV. All this feeling ill, being unable to do anything while all your plans unravel took me back to how I felt as a teenager when my back collapsed. I spent nine months in hospital, three of them in a terminal ward (as the doctors were sure my cancer had returned and I would soon be checking out – I hope this goes some way to explaining my deep mistrust of the medical profession, but I assure there are many more mistakes and misdiagnoses to go towards that explanation). While in this ward of death almost everyone of my fellow ward mates died, some in very unpleasant circumstances. Not the kind of thing a teenage boy normally has to deal with, especially as I was sure I would be joining them in the morgue fairly soon. While I laid there waiting to meet the grim reaper, I listed all the things I would never do. Dye my hair, go to a night club, and of course…. have sex. So when I was told not to worry, and I only had a knackered spine that would stop my walking and disco dancing for ever, I was very…. very relieved.

I then promised myself to live life as if every day was my last. And boy did I? I have had the kind of life that most non disabled people could only dream of, and I have built some superb memories to look back on next time I am expecting a visitor from Mr Reaper. But recently I have found myself worrying about stuff, and trying to create a secure future for me and my lovely wife. You know, grown up stuff that can suck the joy out of life in a major way. If you add that to all the worry that this crazy government and it’s even crazier policies on disability have brought to bare on most disabled people’s lives and I have really lost that joy for life. But as I lay in bed, either boiling hot or freezing cold as my body fights this damned infection, I find myself remembering the goal I had in my teens. Sod the Tories and their drive to force disabled people to either swim or sink, screaming, and the fact the place where I live seems to get a little less accessible every time I go out. However much the world seems to view disabled people as a drain on societies coffers, who unreasonably demand equal access to the world around us even if it means altering historic buildings (sorry but I am currently in a battle with a Camden preservation body about ensuring wheelchair access to the local canal and “heritage features” have become dirty words in my house), life is too short for all this arse.

Instead I must seize the day, and enjoy my time on this planet. Of course that doesn’t mean I shouldn’t fight for a better world. Just make sure I enjoy the fight, and really enjoy the successes. I know that I have won some serious fights here in Camden over access and am now taking this experiences to the wider country. But I must remember to enjoy the process and the outcome. I must also remember not to let the bastards grind me down. If I get turned away from a building for being a fire hazard I must not let it ruin my day… or night. Instead I must just go elsewhere, have a great time… and then enjoy suing the people that turned me away. Whatever the issue or barrier, I must stop seeing them as a reason to get down. No they are a joyous thing, something to fight against and a fight to win. And if I don’t win, then sod them yet again. Not only will I not be going there again, but neither will my mates and family, and I’ll write a stinking article about them for this blog.

I think it is the one thing that can give us disabled people a clearer view on life. Once you’ve tasted how precious life is, the drive to enjoy becomes stronger. Yes it can also make the injustices we face cut deeper, but maybe it will drive us all shout louder against those injustices. All I know is that now I understand that once I am well again I plan to try to enjoy every minute of my life, whatever is thrown at me. So come on life, give it your best shot.

PS. My wife has just quipped that her pain in the arse now has a pain in the arse. That’s why I love her.

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Proud to be a Freak!

One of my favourite shows on TV at the minute is C4’s Seven Dwarves. When I saw it advertised I thought I was going to hate it, but it is probably the best example of this kind of TV I have ever seen. Normally “Freak” TV focuses on what is so different about it’s stars, but Seven Dwarves flips that on it’s head. Most of the time you are watching the lives of seven performers, their friends and family and only occasionally are you reminded that they are “different”. I really think that all TV production companies that are commissioned to make a show like this should be forced to watch Seven Dwarves to see how it should be done.

Another reason why I think it is so good, is that it really proves the Social Model of Disability. To anyone who does know what that is, it’s a way of examining disability that states that we are not disabled by our conditions or differences but by the way the society disables us. I’ll explain using little old me as an example. I cannot walk due to a spinal collapse caused by a childhood cancer. So in medical terms I am a paraplegic due to a partial spinal injury, through complications caused by an Post Natal Adrenal Neuroblastoma, that confines me to a wheelchair permanently. But the Social Model states that by using a wheelchair I am able to live life exactly the same I would have if I could walk, barred only by environmental barriers such as steps, uneven pavements, lack of lifts and accessible toilets. If the world I lived in was designed to be fully accessible then I would not really be disabled. The Seven Dwarves live in a normal house, and use aids to be able to access it’s facilities. Thus they are not disabled by their difference within an environment that they have adapted to suit their needs. It’s only when they enter the outside world that barriers can cause difficulties. If the wider society understood this, then maybe we could actually start working together to build a world that was totally inclusive. This would mean that disability would not be such a big thing and we’d all be able to live equally. Sure there are elements of being disabled that are medical. I have chronic pain as I have some nerves trapped in my back, and the Seven Dwarves speak about some medical hassles that arise form time to time, but everyone has illnesses and health issues. It’s just ours are made into a bigger deal by being labelled as disabled.

The thing that shocks me the most as I watch Seven Dwarves is how much the public seems to laugh at them and ridicule them to their faces. Us “freaks” are expected to put up with this kind of thing, even by people who would be furious if they were at the sharp end. My wife has a big scar on her right arm and when we first met she would regularly get shouted at in the street by people offended that she dared to go out in public without it being covered. Many of these people were from ethnic minorities, yet they never seemed to see the irony that they were shouting at a person in the street about a difference that only went skin deep. I mean my wife’s scar impairs her abilities in no way at all. The only time it impacts on her life is when people make comments about it. I also regularly get comments and negative reactions, yet really I look like a bloke sitting down. The way that everyone on the planet does when they sit down to eat. But the wheelchair seems to make it open season. I must admit I tend to react in a more openly upset way than my wife, and it did make me happy that the stars of SD also react in a proactive manner. Tee hee.

What amazes me is that people think that acting like this is acceptable behaviour. More amazing is that the next generation are continuing to be arses. My nephew was diagnosed with Luekeamia when he was 5. He is now 13 and has totally cured. Yet he has been bullied at school by kids telling him he is weak and inferior as he had cancer. When he told me, and fellow cancer survivor, I nearly drove up to his school had showed the little shits just how inferior someone who beat cancer can be… with my fist. But apparently he had already done this, and ended up getting suspended for a week. For standing up for himself! When I was his age, kids bullied me but I used the patented Mik technique for stopping this kind of behaviour. I kicked them in the bollocks. Hard and with my metal sided caliper. They never did it again. In fact a few became good mates, if only to avoid the “leg of doom”. Yet now over 30 years later, instead of the kids bullying someone because he was different from them getting in trouble for doing something that should be unacceptable, the kid being bullied and standing up for himself was punished. If that’s the way schools deal with this sort of thing, then God knows what kind of world we will be living in when they grow up.

Before I go, I shall explain the title of this blog. I told my nephew that he was not weak and inferior. In fact he was strong and superior. He had beaten an illness that kills many of the people it touches. That goes for all of us who have been touched by illness, disability and difference. We have the strength to fight our conditions, whether we win or not, but we also have to exist in a world that causes our disabilities and differences to impact on our lives, and we’re expected to put with it. At the minute we are being told we should all be going out and getting jobs and contributing to a society that still thinks we are less than them, and gets away with telling us so… to our faces. All I know is that I have always been proud of who I am. My disability has shaped the person I am, and I like me. I am disabled and bloody proud of it. So up yours, all you perfect people. All the same, all healthy and “perfect”. I rather be me any day!

I am a Freak and Proud!Link

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Yummy, hospital food in my tummy

I found myself having to stop watching the C4 dispatches program that is on right now to write my story of hospital food. Tonight’s program is dedicated to how poor the quality of the food you are given is during a hospital stay. For details of the show visit

Dispatches – The Truth About Hospital Food

Now I have had many stays in hospital over my life. When I was 15 I spent nearly three months in a terminal ward at the National Hospital for Nervous Diseases in Queens Square, London. This ward had it’s own 24 hour kitchen and the food was superb. The quality was maintained as it was understood that every meal might your last and so every patient was fed whatever they wanted. Luckily I did not die, but was very well fed during my stay. I then moved on to the RNOH, in Stanmore. Now here the food was not so good, but was still edible. The food was cooked on site and was created to ensure that each meal was balanced and healthy. I must admit it wasn’t as good as NHND but luckily the wonderful staff who handed out the meals made sure we had plenty of fun stuff, like ice cream and biscuits to make up for not always eating everything we were given. The main reason why I did not come out of hospital thinner than when I went in was all the steroids I was given that helped me have a rapid recovery from my life threatening illness. I left hospital after nearly nine months and went home, to lovely home cooked food.

After ten years I returned to the RNOH for a kind of spinal MOT. After only three days I checked myself out, entirely due to the awful food. By now I was a vegetarian, and found I kept being given meat in my food. They even managed to make awful toast at breakfast. I expect it to be coldish, but wet and icy. The milk was off every morning, and so I couldn’t even stock up on the one meal that you would imagine was impossible to ruin. But however bad this stay was, it was nothing compared to my last visit.

In 2003 I had to go into the RNOH to have major spinal surgery. There was no leaving early this time. I had the operation after less than one of day of being in hospital, and spent two weeks in intensive care afterwards, throwing up everything I tried to put in my stomach due to a reaction to the anaesthetic pre-med. When I finally was moved onto the isolation ward I was well enough to eat. You would have thought that after so long not being able to eat, and with such major surgery to recover from that ensuring a healthy food intake would be seen as essential to my full recovery.

No such luck. I soon found that the only veggie option was salad. Cheese salad. This comprised of lettuce, grated carrot, gated mild cheddar cheese and a sachet of salad cream. Occasionally it would be a jacket potato, which would be either under done or just soggy with a few beans or yet more grated cheese. The breakfast was OK, but otherwise I kind of starved. I started loosing weight at an alarming rate. By this time I had been put in a full body cast, to hold my spine still. Within two weeks I had lost so much weight that I could slip one of my arms down the side of my cast, and could almost turn round in it so I faced the wrong direction.

But not only did this happen, but it also caused problems that still haunt me even now. You see my stomach was so empty that all the prescription drugs I was being given, such as very strong morphine based pain killers, anti-inflamatories and antibiotics to name a few, all began to burn through my stomach lining as they dissolved. They also caused terrible constipation, which is no fun when you are unable to move and are not eating too much anyway. So I was also given tons of laxatives. At this point I must apologise to the poor nurse who had to help me deal with the poo-cano (a volcano of poo) that the over prescribing of laxatives caused. The horror!

Anyway, after three months of this my wife insisted I was sent home. She then looked after me for the six months recovery period and fed me very well. But this is where the problems I now have with my digestive system arise. After being starved to within an inch of my life, and being given hand fulls of pills that were eating way at my stomach lining, coming home to good healthy food while being forced to lie on my back has caused my stomach, duodenum and bowel to become a nightmare. I have a condition called Barratt’s Oesophagus, which is where you throat becomes like part of your stomach producing stomach acid, and was caused by a mixture of the starvation, drugs and laying on my back for so long. It will not go away, and may lead to cancer of the throat in the future. Whatever it may mean tomorrow, I have to take super strong anti-acids for life, and these stop me digesting my food properly. This would be bad enough if it wasn’t for my ulcerated duodenum which occurred thanks to all those pills without food.

That saddest thing is I was always really lucky to be a paraplegic who had full control of his bowl and bladder. So while the spinal surgery saved these vital bodily functions, the awful food has led to my digestive system being about as knackered as it could be. It could even lead to serious illness in the future.

So it is vital that hospitals understand that the price of food is not the key thing. What you eat in hospital should be seen as important as the surgery. What is the point of advances in medicine if patients are going to be fed food not too far removed from that served in Nazi death camps? I know that all the treatment I have had to explore my digestive tract and to fight the effects of months of starvation during my last hospital stay has cost the NHS a pile more money than how much it would have spent on serving me something I could have eaten. I am always amazed at how the surgical teams in hospitals don’t complain about the false economy of crappy food. What’s the point of them working so hard, only to watch their great work undone by penny pinching on something as simple as food? In my case the surgical team installed of £250,000 titanium during a 15 hour operation and while my back is nicely fixed, but I am still fighting to get on with food. How stupid is that eh?

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Television & Disability – The Mik Scarlet Lecture – Part 1

Last night watched the Huw Wheldon Lecture with Dr Brian Cox OBE. As my wife Diane is currently studying for a degree in Physics, and so I am becoming interested in science by osmosis, we tend to catch whatever programs he is involved with. Not only is the Coxster one of the sexiest men is science (as I am told repeatedly by Di and her friends), but he is one of the key movers in making science more popular and understood by society. When I saw he was giving a lecture on how science should be portrayed on TV I knew I had to catch it. Finally a program about science where I would be as knowledgeable as my wife.

Of course Brian, and as someone who regularly visits my front room I feel I can call him that, didn’t let us down. The lecture was fantastic explanation of how good science programming should be made. Let’s face it, Brian Cox is one of the leading Physicists in the world today, The Wonders of the Solar System is one of the best science shows ever made, and with the help of his wife Gia who works in the media, Dr Cox (more formal now) is one of the best people to explain the direction that science TV should be moving.

Royal Television Society Lecture – You Tube – Part 1
Royal Television Society Lecture – You Tube – Part 2
Royal Television Society Lecture – You Tube – Part 3

After watching the show, I found myself wishing that someone could do the same for the direction of disability in factual and documentary TV. As I can’t get a TV company to give me 40 minutes of air time, I shall try to address how TV should deal with disability in blog form.

The first question that’s needs answering is that of language. Whatever the story being covered, what language is used changes the way that story is perceived. Let’s take an example. Say a local news station ran a story about a disabled child raising money for charity. Now having seen this story many times we all know that words like brave and courageous will pop up somewhere. The problem with words like that is context. If the child had done something that anyone might call brave or courageous, such as climbing a mountain or a parachute jump, then maybe such words might be OK. But if the child has just put on a jumble sale or done a sponsored swim then these words imply that the fact someone disabled has done these things is some way different that if it had been an able bodied child. This is not the case. The story should be about what a thoughtful child this was, and almost ignore the disability. Why? Well, the focusing on the disability makes the good deed a side story to the fact a disabled child can actually do things. It continues a belief that anyone disabled is less capable, and that this disabled child is uncommon. There is also a more subtle issue. It creates an impression that any disabled person who does not push themselves to do such uncommon tasks are in some way less. As disability is already thought of as making someone less of a person, this kind of language entrenches this attitude. As I have already said, the focus of the story should be on the fund raising and not on the disability.

This focus also carries over to the stories about people fighting illness or coming to disability. Those who are in this position are not brave or courageous. Actually most people will fight and try their hardest to cope. This is demonstrated by the fact that so few people do kill themselves or pop off to Dignitas. Of course it is hard, and I do understand that it can help your state of mind to think of yourself as brave during a dark time. But I know from personal experience that it can have equally dark effects.

When I went into my wheelchair, I was always being told I was brave. It appealed to me to think of myself that way and helped me cope. But whether you are ill or newly disabled or your disability has changed in some way, you will come to a point when it does get to be too much. When it does, you find yourself not only depressed by the situation you are in but also by the feeling that you have let everyone down by not being brave any more. In fact the lack of bravery can make you feel like you would be better off not being around, for all concerned. It happened to me when I 17. I had been in my chair for 2 years, and had coped very well (and bravely) with the illness, the surgery and readjusting to life. Then one day I found myself wondering would I ever have a girlfriend. I was sure no one would want to be with a cripple like me, and I crashed into a depression. Then I felt a total failure. Not only was I going to be alone for the rest of my life, but I was also a coward. I considered killing myself, and even prepared everything. I cut the cord of an electrical appliance, plugged it into a socket, ran it to the bathroom and ran a bath. I was going to get in, and drop the cord into the bath. It was only the fact that my parents would be the ones who would discover me that stopped me. Typically, within a few weeks I had a girlfriend and I realized that the whole “brave” thing was foolish.

At that time disability never seemed to be on TV, so this was the result of just the language used by my family and friends. We now see soldiers coping with horrific injuries and disabled sportsmen and women as strive to be the best at their chosen sport, continuously being called brave and courageous. I know that it will be having a much greater effect. Especially as these types of people have mind sets that revolve around performance and excellence. Imagine how it will effect them when they feel that they hit a low point, and have become less by no longer being brave.

Not only does it effect those who are disabled or sick, it also creates an attitude towards disability and sickness that has an effect on all society. Anyone who is not disabled or sick is sure that they could not be that brave, and so they begin to think about the subject with fear. They are sure that if it ever happened to them they would rather die, mainly as they doubt they could cope. If the media showed that the majority of people face such a life changing event in the same way as these soldiers and Paralympians do, it would make disability much more accepted and understood.

The reason why I know people would cope is because it’s why humans have evolved to be the most advanced life form on the planet. We adapt to pretty much everything that’s thrown at us. Also it would mean that when these soldiers and sporty types hit a moment when it gets too much they won’t find themselves feeling like a failure for not continuing to be stoic.

Now that’s a lot to read through, so I will stop there. Next time I will look at words like tragic and examine the subjects of news stories and documentaries. So stay tuned.

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Here we go again… or watch out for the slippery slope.

Yesterday’s ITV national news at 6.30pm ran the story of Tony Nicklingson, who, after having a stroke, suffers from “locked in syndrome”. This means while is mentally he is fully functioning, physically he is only able to move his eyes and head. He cannot speak but communicates via a spelling board. The story revolved around the fact that he is going to court to try to get the law changed on mercy killing. Not assisted suicide as he is too disabled to be able to do anything himself, and so can play almost no part in his suicide. This would make helping him to die a mercy killing, which would be murder as the law now stands.

The presenter and the item reporter talked about how Tony had been a keen rugby player and the life and sole of the party but now could do none of those things, their voices trembling with emotion. His wife read out a statement that Mr Nicklingson had written with her using his spelling board. In it he told how he was “fed up with his life” and how he was not thankful to the doctor who saved his life.

Now at this point in the blog I originally went off on a vitriolic rant but have decided to try be more measured, both to make sure I get my point across and to avoid legal action. However if moments of anger do creep into what I write, please forgive me as this is a subject very close to my heart.

Every time I see one of these people campaigning to be killed, whether it be assisted suicide or mercy killing, I am stunned. Stunned and then filed with rage. Are they so selfish that they cannot see the bigger picture? Do they care so little for anyone else, or know so little of history that they can only see their own discomfort? Of course people like Mr Nicklingson have been handed a crappy hand in life, and I totally understand how depressed he must get. But there is a much more at stake than one person’s life when we start to go down this road. Once we do say it is OK to allow mercy killing then the slippery slope will lead to a world that snuffs out anyone who is serious ill or disabled.

Neither my wife, who was seriously burnt at the age of 6 months, or I, who had cancer at birth would still be here. In fact my wife’s father, who has epilepsy would have been put down after his first fit when he was a young boy, so she would even have existed. Or would her two sisters, or their sons. So already, that’s seven people taken out of existance. OK that’s a bit dramatic, but this is the result when you start making decisions around life and death on something as intangible as quality of life. What is a good quality? How do you decide? Will it come down to a list of conditions that we as a society see as just being too much to bear? But who says what is a terrible illness or disability?

Once we have eradicated everyone with these serious conditions, surely won’t people with lesser problems, things like dyslexia, poor vision, weight problems and maybe even the elderly, start being considered to live lives with no quality? Once you start, the goal posts will keep changing as society starts to see any condition as being unbearable. Another outcome would be the gradual change in medicine. No longer would doctors and surgeons strive to cure disease. Instead they would just kill their patients, as an act of mercy. Slowly all research would cease and eventually all illness would be seen as something that merits death.

But whatever your beliefs on this issue, the way it is reported on TV is disgusting. No balance, no examination of the subject. Instead we see an editorialised piece filled with words and phrases like “tragic”, “suffering”, “die with dignity” and “right to choose”. Tonight’s item on Tony Nicklingson was given the leader line “Trapped inside his own body”. Well aren’t we all trapped inside our own bodies. That describes being human, surely? There was no exploration of his condition, and if there are ways of allowing him to live with his disability independently and with dignity. Let’s not forget that Mr Nicklingson has a similar level of disability as Stephen Hawking, a man who has changed the way we see our world and who has written loads of books while being “trapped inside his own body”.

Instead of focusing on how this man wants to die, which is common when people are at the early stages of a new disability, the news should really have explored why this man has not been given the services and support that he and his family obviously need. It also should have looked deeper into the history of mercy killing, the truth behind what it means and why some people believe it is something we should avoid at all costs. At the least it should have been a measured piece and not shock news that played on people’s fears of illness and disability.

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