Thursday, 23 December 2010

Happy Xmas!

This is a very short blog to wish a very Merry Xmas and as Happy New Year to everyone out there in blogging land. Hope you all have a fantastic festive season and that 2011 is a great year for you all.
Best Wishes
Mik and Diane.

Friday, 17 December 2010

"My Brother and Me" or how to make Mik so angry he can't rant!

Last night I sat up in bed trying to write something about the BBC3 program "My Brother and Me", but I found however hard I tried a mixture of anger, sadness and incredulity meant all that I could manage was an incoherent list of why this program was everything that goes wrong when TV decides it has to "do disability". Now in the cold light day, after a good nights sleep and with the anger in check (hopefully) will give it a second go.

I would normally put a link to the show, and advise you Dear Reader to go and take a look, but I have mixed feelings about doing so in this case. While I want to make sure that if anyone hasn't seen the show that they do understand why this show was so bad, but I would also hate to be the one that made anyone else have to hurt their soul and waste any precious life watching this example of very bad TV. I am also worried that the producers of the show and the BBC itself may take the number of hits the show gets on I-Player as a sign of what a success it was. Yet I suppose no one wants to be the kind of person who complains about something they haven't seen, so I apologise in advance. Maybe read the blog and then decide whether to burn the scar of this show into your memory.

Why did this show offend me so much? Three main reasons.

Firstly, the focus. Instead of the disabled person being the key character in the program and driving the story, the focus was around the young TV presenter Jeff Brazier - yes I have never heard of him either - and his "Project" to get his disabled brother to be more independent. Now I understand that Jeff's brother Spencer's Cerebral Palsy means that speech is very difficult for the teenager, and this will have caused the show's producers a headache around how to shoot the program, and that BBC3 is a youth channel and celebrity sells with today's youth but the main focus when exploring disability in a show should always be the disabled person. This program gave too much weight to the thoughts and cares of the able bodied protagonists and didn't really explore what it is like to be a disabled teenager who wants to break away from his over protective Mother. Or what having your perfect brother suddenly decide that they were going to make you a project and spend three weeks of his life nagging you to do things the way he thought was right. Yes that is that is what this show is about! Nice huh?

The second problem is portrayal. This show gets it wrong from the offset, by making it a program about someone able bodied trying to make a disabled person's life better with the mantra of "it's for your own good" running through every second. It could have redeemed itself if it had shown disability in a positive light and empowered young Spencer. While there were a few great moments, mainly when Spencer got so fed up with being told what to do that he got angry, nice one mate, most of the show either had an air of "poor little thing" or was all "stare and be amazed at the disabled freak while you gaze longingly at the wonderfulness of the able bodied TV star". All the able bodied people in the show were apparently successful, whether it be as a C-List celebrity or as a Mother, and only the disabled person was the one needing fixing. Ignoring the fact that if this disabled teenager was too dependent of his mother, it could only have been her that made him that way completely, and that his AB brother was an arse of the greatest order!

The third flaw was... just about everything else! What got me most upset was what a terrible waste it was. One of the worst times in any disabled child's life is that period when you want to get more independence. I remember how hard I fought to break away from my Mum, and showing this in a realistic and thoughtful way on TV would not only have helped the wider world have a deeper understanding of what it is like to be a disabled teenager and thus a disabled adult, but also given hope to anyone going through that awful period themselves. It would have educated and entertained without being patronising or damaging. But no, instead we got a vehicle for a celebrity to show what a great guy he was. The disabled person became almost a plot device. Luckily Spencer fought through and was the only redeeming thing in the show. Even with speech proving difficult, he came across as knowing what he wants for his life, and understanding the truth of how he will achieve these goals.

I feel that the show's producers really missed an opportunity. The part where Jeff is trying to get Spencer to use a speech synth machine really demonstrates where the show goes wrong. Spencer is not keen on using one, as he feels it makes him more disabled, but he is nagged into trying one by his do gooding brother. He gives it go, and you can see that while he enjoys being able to communicate easily, he is still very unsure about how such an aid makes him feel about himself. Do we explore this? No. Do we even mention what the issues are around getting such help and problems like funding? No. We don't even get an real interview with Spencer using the voice synth that allows him to explore how he feels in depth. Instead what we get is Jeff nagging his brother to do a sponsored walk to buy the piece of machinery. No question of why he it isn't provided it by the NHS, or what ways he could get it in an empowering way. When Spencer says he wants to just buy the thing, he is told off as this will mean he has no savings left. "No, charity it is for you young crippled boy!" This kind of thing really shows how everyone around young Spencer has absolutely no understanding of what it is like to be disabled. If I didn't know better I would have said all the able bodied people it this show had never met anyone disabled, let alone brought up a disabled son or grew up with a disabled brother!

But the worst offenders were the BBC3 production team. Back when the DPU existed, the whole team wrote a set of guidelines to help TV producers cover disability in the right way. The plan was to make it impossible to create programs that got it wrong in the future. Sadly the BBC no longer use this fantastic document, and so we get stuff like Me & My Brother. BBC3 are the worst offenders. They just don't get it. I was involved in a show for BBC3 a few years back, but it ended with a huge argument after the media studies graduate producer (don't get me started on how media studies and how it is taught is one of the main culprits for the way disability is now portrayed on TV - maybe that should be a blog for a later date?) told me he knew how to do disability. Luckily I did stop myself from attacking him, and went instead for bursting into tears - yes that was how angry I was with the guy! The show did go ahead with one of the new generation of disabled talent fronting it, and was another BBC3 disaster. It just shows that no one at this youth channel gets disability. They want to shock and think outside the box in an attempt to appeal to the youth, but with no real understanding of the issues around disability or knowledge of how to film it they end up repeating, and even building on, their mistakes.

I just hope that someone at the BBC decides that enough is enough. Please, let's hope that this is the last time we get such a damaging show made as part of the BBC's commitment to community programming. Someone high up at the corporation must ensure that the BBC sticks to the standards that have made it famous the world over and needs to make sure that disabled people are portrayed with the same level of dignity, respect and understanding that other minorities expect now. I really feel that not being on our screens at all is preferable to shows like this being made.

Anyway, after reading all that if you are brave enough to take a look, here's the link.

My Brother & Me - I-Player

Wednesday, 8 December 2010

Disability & TV - The Mik Scarlet Lecture - Part 3

Before I explore the subject of content, disability and television I feel I must just quickly give my solution of the issue of the title of the C4 show "Freaks of Nature", that I posed in my last blog. The answer is a question mark. "Freaks of Nature?" not only makes the program's content make more sense, but also stops the casual viewer or listings reader seeing the show as saying that disabled people, or disabled Paralympians, are freaks of nature. Just a small question mark makes the show a more valid political statement on top of being a fantastic sports program. This really demonstrates how language is so important and must be paid very close attention. Not only when covering disability but at all times.

I've covered how to use language on TV but not what to talk about. But why not cover that first? Well, program content can be a case of personal taste and what appeals to one person may make another rush for the remote control, but the language used is vital whatever the show is about. In that case, why even try to explore program content? Because the way that content and individual stories are covered can change the way a program works dramatically.

Let me demonstrate by referring to a program I was involved in again. Sometime ago I went to the BBC with a documentary idea around the decision I had to make about whether to undergo surgery and to try to walk again. It was put into production with brilliant new up and coming deaf producer, Ally Scott. We wanted to make a show that really explored the issue and showed that it wasn't such a cut and dried problem, as most people thought. The program would revolve entirely around my life, how I lived and we would explore what being able to walk might add to my life, if anything, and what it might cost me in time and commitment. There were plans afoot to film all manner of footage that showed the subject in a glamorous, positive and televisual way. We hit a problem when a misunderstanding between the production team and my surgeon led to the artificial hip being manufactured, at a cost of over £150,000. My surgeon was annoyed, to say the least, when we talked and I explained I felt I would not being going ahead, and he insisted that a new production team was put in charge of the program. This new team changed the direction of the show, and in the end it included three other people, all of whom desperately wanted to walk again. This was done for "balance". While the show did examine the issue, it did so from a view point that made not wanting to be disabled normal and so reinforced the very attitude I wanted to dispel when I first approached the BBC. The show was well received but I know how massively important the program would have been if it had followed the original direction.

Many times disability makes it onto our TVs with balance as one of the driving forces behind how it is shown, yet that balance is there to reflect many of the attitudes that disabled people wish would change. We want to see our real lives represented, and that should be all of our lives and not just the areas where being disabled might have an impact. Also how one person's disability impacts their life will differ from anyone else, so it is the elements that might be considered "normality" that ties us all together. For example, I get asked to get involved in many shows about how hard it is to find partners if you have a disability but I always ask are you going to include those people who didn't find it hard and examine whether it is really that different for able bodied people who are lonely? I explain that I feel to make a show about disability, sex and relationships there needs to be balance (that word again - play them at their own game!) and if a program is going to cover the problems that disabled people might have when looking for sex and love, it must also explore solutions, compare what it is like if you looking for love and able bodied and show the good things, and even the benefits, that being disabled can bring to your love life. (For more details visit my website Mik Scarlet - Wheelie Sexy). Of course by doing this I scare off the production companies, who have a fixed idea of what such a program will contain, and hence no Mik. But at least I have my integrity. Good for the soul, crap for the bank balance.

Many shows portray disabled people as "tragic" or "brave", even if they don't use the language itself. Time and time again when we see disability on TV the program is focusing on someone who is sick (tragic) being cared for their by their wonderful children (brave), or a disabled child (tragic) who is fund raising for charity (brave), or a disabled soldier (tragic) who is battling to get up on his false legs so he can walk down the isle (brave) or something similar. But while TV has to have these personal stories running through it, especially in today's reality obsessed culture, the bigger issues are never even mentioned. Why is the child being expected to care for their sick parent and where is the state provision in that care? Why does this charity exist at all? Why does the soldier see disability as such a negative thing that all of his time is spent trying to be fight it? How can society be shaped to make all of these people's lives easier and fairer? These types of questions are key to changing how disability is thought of in society and I do not think it would detract from the show's direction to bring up the deeper issues.

So as the Paralympics and Channel 4's push to get more disability on TV gets closer, I hope that those involved in creating this output wants to explore those deeper issues. I have always wanted to see a show that goes into why so many newly disabled people turn to sport as an outlet. Mainly as I dived into the world of music and art after I started using a wheelchair, and truly thought "Yippee, no more sport" when I was told I'd never walk again, but also as I want to understand the psychological reasoning behind the choice. It's the world behind the what we see that TV can help us understand and by doing so it can make a real difference to all of lives. And do it while creating entertaining and enjoyable programs everyone wants to watch. I also really expect some serious documentary programming that delves into how disabled people really live in modern Britain, and not just a load of positive puff pieces about super sports personalities and how great everything is.

Well that's the end of my exploration of disability and it's portrayal on our TV screens for now. It's subject I know I will come back to in the future, especially when I see something that I feel misses the mark. I know that it is a subject that is high on the agenda of many disabled people out there, and I would love to know what you feel about this important subject, so please comment below. I also plan to examine how disability is covered in the print press, magazines and other forms of media in the near future, as well as why we seem to be so poorly represented in industries like music and fashion. Please watch this space.

Saturday, 4 December 2010

Disability & TV - The Mik Scarlet Lecture - Part 2

In my last blog I hope I helped to explain why most disabled people find the use of the words brave and courageous in television output offensive, and why these words can have an effect the the mental health of anyone during the process of readjustment that occurs after coming to a disability or illness. In this blog I want to explore words like tragic and sad.

These two little words pop up all too often when the media cover anything to do with ill health. The main reason is that finding yourself disabled or being diagnosed with an serious illness is pretty tragic, both to anyone not involved, who are watching from the outside and to those going through the process. But how these words are use is massively important. I shall demonstrate this by telling you the story of why I am disabled.

My parents tried to get pregnant for over three years, and where over joyed when they got the news that my Mum was expecting. They spent the next nine months decorating my nursery and buying lovely baby clothes. On the day of my birth, my Dad ran up and down the streets of Luton going up to strangers, giving them cigars and exclaiming "I'm a Father!" and "It's a boy!". He even purchased a tiny Luton Town football strip, as he had planned my future career already. Mum always calls it "One of the happiest days of my life". However in only eight weeks time I was rushed to hospital, as I was having serious trouble breathing, and a huge cancerous tumour was discovered. My parents were told it was pretty definite I was going to die, but there was a new treatment that might give them a few more years with me. So after a massive operation, the next five years were spent ferrying their much wanted little baby around the country to be pumped full of toxic chemicals or shot with massive doses of radiation, with the dream of a little more time together. Then after those five years, when they were told that the treatment had worked and the cancer was totally in remission, my Father suddenly died of a heart attack.

Now I know that is a tragic story. Not only because I lived it and I have a heart, but because I have been giving autobiography to publishers and agents recently and they all say "What a tragic story". Yet it is my story, and I kind of feel it is much more a story of what people are capable of. Not brave or courageous, but more aren't we just amazing. I know that if this was being made into a TV documentary, the desire of the production team would be to focus on the tragedy of the situation. Poor sad parents, poor brave little cripple boy, and the tragedy of loosing the Father. Move over Eastenders, this is TV gold. But how ever much it is tragic, it is the events that are sad. Not the fact that I ended up disabled. That was amazing and joyous, as everyone thought I'd be dead by the age of five. Surely everyone who finds themselves disabled, especially after injury or illness, is wonderful... as the alternative is death!

It is a difficult line to tread for the media when covering such a story, but it a very important one. When they make the fact that someone is disabled, or has become disabled the tragedy then they do everyone watching a massive disservice. However much the huge car crash is tragic, the fact that the driver or passenger ends up disabled is much more desirable than a funeral service. Why? Because if the viewing public is continuously told that becoming disabled is a tragedy, then they see it as something sad and worthy of pity. They also find themselves fearing being ill or disabled, and we all know what humans do when confronted by things they fear. So whenever the media tries to cover stories about disability they must ensure that however sad the story is, they word the piece so that it is the events that are sad and not the out come.

I did plan to go on to explore the kind of content that TV goes for when exploring disability and illness, but I really want to cover another word first. That word is Freak. Last night Channel 4 transmitted the sports programme "Freaks of Nature", which was a re-edited version of the superb "Inside Incredible Athletes". I thought that C4 had kind of lost the plot a bit when they used the term "Freaks of Nature" to advertise their Paralympic coverage and the Inside documentary, but then to use it to name a shortened version of an already shown program really sets alarm bells ringing. I really hope that someone at C4 starts trying to make sure that everyone involved with making their Paralympic output has an understanding of the correct use of language when covering disability. You see, the word Freak is the same as Cripple and any medical term used as an insult, such as Spastic. We can use them to talk about ourselves, but no one else can. It's the same as Black people and the "N" word. I have played in bands called Freak Show, and Freak U.K. (although that was more because the initials spelled FUK and we sold a shit load of T-Shirts) and my good friend Mat Fraser has performed a series of theatrical shows using the word Freak. But we can, it's our word. Unless everyone involved with the C4 program was disabled, they needed to choose a different name. Especially as they had already called the show Inside Incredible Athletes, which was fine. Another reason why FON was such a shite name for the doc, was it just showed that Paralympians aren't Freak of Nature but are so good because of their commitment. I used to work with Dame Tanni Grey-Thompson in the 90's and could not believe the amount of dedication it took for her to be such an amazing athlete. It was nothing to do with nature, I can tell you. It was all her. So why not just Incredible Athletes?

I think when it comes to the word Freak, I can explain it best in the following way...

I can call myself a Freak, you can call me Mr. Scarlet!

Next time - Content and Cripples (another word only we can use!)

Thursday, 2 December 2010

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.

Tuesday, 16 November 2010

Wedding Blues

So, Prince William and Kate Middleton are getting married eh? The country goes Hooray. As Philip Scofield said today on This Morning, "Everybody loves good news". But then isn't that part of what the Royal family is there for in the modern UK? To take our eyes off times of trouble. Timed brilliantly to coincide with the start of the cuts coming into effect, we all now have something to become obsessed about. Already the media has gone into a frenzy, so by the the time the big day comes round they'll be rabid. They'll be much less time and focus on how our society is changing as this government slashes and burns everything we have spent so long building up. Who cares about student fees, look at her dress. Who cares about the widening gap between rich and poor, aren't they a lovely couple?

Time and time again during the last Labour government there were stories in the press about the lengths gone to to hide bad news on days where really big events filled our media. The Tories made a big deal about this, as did the media... after the event. It is a mechanism that has been used through out the history of this country by those who rule. I want to make sure that I voice the fact that I see this as just as cynical. I am not a Royalist, not by a long shot. I even turned down the chance to go a to private dinner with the Queen and members of her family back in my TV star days, as I was not prepared to conform to Royal protocols. Whatever my personal views on having a monarchy, that is not what this blog is about. It is how much the people who are in control of our society work together to shape how we see that society.

I will use the example of disability as it something I know about personally. When I hit adulthood, I had just started using a wheelchair. Before that had a limp, and the world was my oyster. I had ten offers of great jobs, and could see my life going in the same direction as all of my school friends. Once in the chair, all those jobs offers disappeared and my future became quite different. I was told I would now be "unemployable" by social workers and others trained to assist me through this difficult time. And so I was farmed of onto benefits. But no one called my a scrounger and a drain on society. The general consensus was that at that time, was with such high unemployment (it was in the UK of the 80's) how could anyone with a disability find full time employment? How could a boss be expected to employ someone with health issues over an able bodied person? However much these attitudes might offend, they are kind of true. Especially at times of high unemployment.

I went forth and made a life for myself with out any help from anyone, except my family. Everything went quite well until my recent accident. While I was too ill to work, and while I recovered from all that fun surgery, I realised that society had started to change. It began with the DDA. Anyone who knows about the DDA, and the Equality Act that replaced it, agrees it is pretty toothless law. Not only is discrimination an act against the person and not the state, which means anyone who feels they have been discriminated against has to take out a private prosecution at their own cost, but with the word "reasonable" in there it also makes it much harder to prove unfair treatment. But this change in disabled people's rights did have one real effect. It started the ball rolling on a move to making society see disabled people as a group who take and don't give. I personally believe that any rights we were given were due to a feeling that disabled people were equal, but more with the long view to start cutting how much we "cost". OK I am a bit of a conspiracy nut, but how things have shaped up since makes me think I was right.

From there it was a small step to "Once we had rights, surely we should have responsibilities? So why should society pay us anything or give us any help?" Just look at the way the Blue Badge is seen. When I first got a car no one had ever heard of someone using one fraudulently or stealing one. Now I have to padlock mine to my car, after having four stolen in just a few months. Why did this happen? Because society was slowly guided, by the media and government, to ask why should those cripples get something I can't? No more understanding of why disabled parking exists, and just a kind of envy of us and what we get crept in it's place. Once this attitude had taken hold, we then start to hear of all the fraud within the "disability benefits" system. Now anyone who has undergone the process of applying for any of these benefits know how hard they are to get. So getting them via fraud is bloody hard, and very rare. Let's not even mention the millions that go unclaimed each year by people either too afraid to claim , too proud or who just don't know they are entitled. So how do we fight this "terrible fraud"? Cut the benefits for all, and make it almost impossible to claim anything. Very much a very large sledge hammer to crack a very small nut. But the majority of the public believe it is the right thing to do.

Now I wish anyone who is getting married well. It was the best thing I ever did and I wake up everyday glad that I found the right one. I just can't shake this feeling that this announcement is very well timed. I won't even ask who the bloody hell is going to be paying for it all? I mean let's face it, at a time of growing means testing I feel that this family is one of the few who can afford to pay for the lot.

Right, that's my topical gripe out of the way. Sorry if it has upset all of you who are overjoyed at the happy news. But then this blog is called "Mik Scarlet Sees Red".

When I read this through I found myself unsure whether to post it or not. I felt I was being a little unfair to the future King and his future wife. So I sat down and watched some TV. When even the continuity announcers on the BBC mention the engagement in their links, I wonder. I suppose the one thing I can be sure of is that I shall have to take a foreign holiday next year when the wedding is on.

Tuesday, 9 November 2010

Happy Blog no. 1

After my last few blogs I felt I wanted to write one that has full of happiness. To do that I want to write about something that has made my life the happiest it has ever been. Love.

I've bee lucky enough to never have much trouble finding partners. Maybe it was the attitude I adopted just after I went in my wheelchair? Whenever I tried to chat someone up I approached the whole situation with this mantra.

"If they are interested - it's because they fancy me, because I fanciable, but if I get turned down - that's because they are shallow, don't want to be with someone who is disabled and they aren't someone I would want be with anyway. Either way I win!"

OK, I did spend a little too long in relationships that were doomed to fail, thinking that I was really in love. In a way I was, just that it wasn't true deep love. I also am sure that different relationships are built on different ways of working. While I now look back on my past relationships as not being built on love, at the time I was sure they were.

What changed my perspective was falling for my wife, Diane. We had known each other for 6 years as friends before we got together. I had always fancied her, and at various times had even stalked her a bit. I found out where she worked, and would rive from my home in Luton to London to see if she was at work. Then I would wheel by and nonchalantly say "Hi". It did go a bit further, but I won;t go in to it too far, as not make myself seem like a scary nut case. One of the good things about pursuing her the way I did is that stalking is only stalking if it is unwanted. Luckily for me, she liked me too.

Our first year was very rocky, mainly as we both liked each other so much yet were so sure that life, or should I say our self destructive streak, would mess things up that we did argue like cats and dogs. After this period or huge rows, talked, and told the truth, and suddenly it clicked. From then on our relationship got better and better and stronger and stronger. For the first time in my life I discovered what real love was.

In our 15 years together, we have worked together as a team through the good and bad times, supporting each other and giving each other our all. It has never felt like a duty or a task but was in fact a joy. When I was recovering from my last op, Diane looked after me like an angel. She still nurses me am ill and I nurse her when she is sick. It's kind of difficult to describe, what it feels like. Neither of us now make any decision without considering the other, and we think about our future as a whole and not as individuals. We are now at a point where we finish each other's sentences, and have a language of jokes and sayings that we share only with each other.

It might not sound like everyone's cup of tea, but this is the kind of love I have always dreamed of. I know we will be together for ever, and whatever life throws at us will will defeat it, together.

Maybe it's why some things do make me so cross. When you are happy emotionally as I am, the injustices of the world seem a little more unfair. Sop if you read a blog that seems to go off the handle over something that doesn't seem that big a deal to you, try to remember it might be love that has caused me to get to cross. OK that's a crazy reason, but when stuff gets in the way of happiness it needs confronting. You all know you can always trust me to do that, even if you think I sounds nuts.

Anyway, I'm off to make a cup of tea for darling wife, who is slumped over her computer studying for her degree. Yes, she got the whole package. Looks, charm and super brains. What the hell she is doing with me I have no idea. But hey when life give's you roses, don't complain.

Monday, 8 November 2010

Not another Talent Search!

On November 14th Channel 4 closes it's search for new presenters to work on the Paralympics. Now while I wish everyone who takes part good luck, it does amaze me that yet again a British TV company has undertaken a search for "New Talent" while ignoring the sea of existing talent out there.

It's not only C4 that seem to be obsessed with the New. The BBC have just carried out a country wide search for new disabled actors. Yet I know of many hyper talented disabled actors that have been working for years that never get onto TV. I only need to think of the superb Graeae production of Reason To Be Cheerful that is running at the minute, which is a show so crammed full of talent it bursts off the stage. Some of those appearing in this show have been on TV, but let's admit it disabled people do not exactly fill our screens.

As for presenters... that really is a joke. As an award winning TV presenter, with many very talented friends who also have spent years working in the industry only to be forgotten, it makes me quite cross to hear of yet another talent search. I've worked in TV for over 20 years and the industry seems to undertake a New Talent search in some form or other about once every five years. If you were part of the last search you can kiss your career goodbye. It normally ties in with you deciding that this is going to be your career and that you should start asking for the same money as the able bodied presenters you work with. Funny that. But it does mean that time and time again all of our major TV companies spend time and tons of money training this new talent while leaving the old talent and all their skill to go to waste. Don't forget that all of us old talent types also have fans and leave a gap in the TV world's output.

So why all these searches? Well let's ignore my cynicism and not go with the New Talent is cheaper argument, and try to find other answers. I suppose there are loads of people out there that would be great presenters and actors and these article to find them, which is a good thing. It also shows that these channels are trying to get more disabled people on screen, and let's face it the Paralympics should have disabled presenters fronting the output. These are great reasons to look for disabled talent. But not to ignore the huge number of disabled people who have already shown how talented they are.

The main problem with these searches is where is the work. The C4 search that happened at the start of the 2000's found some superb on screen talent, yet all of these did pretty much nothing. Even those of us with huge showreels, and awards to boot, still spend most of our days writing embittered blogs about not working instead of being used to front TV. Disabled actors get to play bitter twisted cripples or tragic souls who can't take being disabled any more. Not exactly pushing their talent. I have lost count of the number of auditions for roles that were so stereotypically crap.

Perhaps the TV industry should look at their production talent while they carry out their disabled talent searches? Then whoever is discovered this time won't be ignored, forgotten or saddled with jobs that crush their drive to carry on in the industry. And pay them the going rate please!

I just hope that this a turning point how disability is shown on TV. Fingers crossed that we will start being seen as part of society, and be included as such. Presenters will do articles on stuff that isn't about disability, and may even end up as key celebrity talent. Actors will start playing realistic characters, and may even play roles where their disability isn't even mentioned. Then I won't need to write my embittered rants, and will either be up there with these new guys or watching them wishing them well.

PS. Having said all that I shall be entering the C4 search myself. Let's just hope that whoever is judging allows me to considered as New!

Friday, 29 October 2010

Cold Comfort

I've spent the last couple of days laid low by a cold. Whenever I am stopped in my tracks by something so small as the cold virus, it makes me realize how obvious that we evolved rather than were created. Why would anyone, let alone God, create a world with so many mistakes and flaws? What role does the common cold play? What role does any disease or illness play? Why do we have mistakes in our genetic code that makes sick or disabled?

The only answer is that it is to do with evolution. The cold virus evolved along side humans and so it effects us. Not enough to kill us, like many other diseases, but just enough to allow itself to reproduce and infect others. During this process it mutates so our immunity that will build up when we are laying in bed feeling crappy has less of an effect on the virus allowing it to infect us again next year. Obvious.

Our genetic code creates mistakes that lead to illness and disability as this is the same process that allows evolution itself. Imagine that once upon a time a horse was born with a deformed longer neck. All the other horses would have seen a disability, but this long necked horse could reach higher leaves on the local trees and so was healthier than the other short necked horses. So when it bred those horses that were born whit the long necked trait could also eat those leaves, were stronger and so bred more, passing on a the mutated neck gene. And suddenly the Giraffe was passed into existence. Obvious.

But what always makes me wonder, is why religion doesn't embrace science? My wife is studying Physics at Uni right now, and the amazing things that led to the creation of everything are dazzling. While I see it as random luck, even an devout atheist like me can see that it would be easy to see a guiding hand in the forces at work over the billions of years it took to get where we are today. Yet more and more religions all over the world fight against scientific discoveries. At the same time they worry about falling attendances. Surely these discoveries make the universe more amazing, and that might lead more people to seek answers to why it is so amazing? So why deny evolution or any other new theory to how everything came to be here? Why not admit that God must want us to understand everything and embrace the fact that we above all other animals have the ability to theorize and understand?

Anyway, that's what is going through my head while I cough and sniffle on my sofa watching Star Trek. I'm so ill I didn't even mute the theme tune to Star Trek Enterprise. That theme tune alone is more proof there is no God.

Tuesday, 19 October 2010

Pride... and Prejudice.

In my last blog I wanted to further explore some of the press I had done around my choices not to go ahead with trying to walk. I was shocked, and a little saddened by some of the replies and comments I received in reply to that blog.

The idea that disabled people can live lives that able bodied people might envy seemed to upset some disabled people. Yet surely the disability movement has spent years trying to get across the fact that disabled people deserve the same chances and rights as everyone else, and if given them disabled people would be able to experience life just the same as the able bodied. So why shouldn't some able bodied people be envious of some disabled people? Disability is not a reason why anyone's life will be less in some way.

Now of course many disabilities come with medical conditions. I have a spinal injury, and so am classed as Paraplegic, but the injury caused some nerves to be trapped in scar tissue. This leads to periods of chronic pain, and the pain killers I have had to take has led to problems with my digestive tract. These do disable me, but they are really ongoing medical conditions. Using a wheelchair will never make my life less that it would have been if I could walk. I think it is essential to make sure we understand the difference. I never wake up thinking "I wish I could walk" but I do wish "This pain would stop". Yes, the pain is tied to the disability, but it is not the disability.

I hope that everyone agrees that disability as described by the social model is the way it should be viewed by society. So I am not disabled by my inability to walk, or by my pain or anything else but by the barriers put in my way by the larger society. It's not being in a wheelchair that makes me disabled, but the steps into a building. That goes for all of us disabled people. In fact it goes for everyone. Everyone gets old, or sick. In a world that was shaped by the social model of disability and so was fully inclusive, many of the issues that they will face would not exist. It wouldn't matter if they had trouble walking, or seeing or hearing, or needed a seat or whatever. The solutions would be built into every part of our daily life and the world we all lived in. Any medical issues would be just that. Separate and something to be treated.

At a time when the disabled, the elderly, and the poor are going to be a the sharp end of budget cuts, and when many people in society really believe that assisted suicide and mercy killing is a valid way to go, we disabled people must see that we need to be vocal. We need to shout how we are capable, and can experience anything we want to, if we are given the chance. We have to be proud of how we have got as far as we have, both as individuals and as a group. In 100 years we have fought to go from being shoved into institutions and pitied or feared, to living in the community and having a voice and shaping our own futures. We have made amazing strides forward and must keep on fighting to make sure we do not stumble and loose ground.

My story is a strange one, I admit. Not many disabled people have to make the choice I have recently, but as science advances more and more will. That decision will be up to the individual but I wanted to explain that being cured is not the answer to integrating disabled people. To integrate a minority, the answer is not to correct or eradicate the minority. If we go down that dark road then why not make gay people straight and black people white? Or just wipe them all out? Sounds familiar to me. Who tried that already?

No matter how much a disability, and it's medical problems, effect your life, or how much you may sometimes feel that it gets too much, every disabled person on this planet has the ability to live the kind of life that would make able bodied people envious. We can find love, feel fulfilled and be happy. I know how few able bodied people manage to achieve that. Yes it can be a real struggle, but it is for everyone on this planet. It's the extra barriers that are put in our way and the ignorance of what we can achieve that are the enemy, not our disabilities.

Wednesday, 13 October 2010

A Happy Cripple - Shock Horror!

This weekend the Mail On Sunday ran an article on my choice to not undergo a series of operations and years of physiotherapy after my last spine operation returned the feeling and function to my legs. Since it was published I have done a couple of interviews on radio about the subject and thought you all might like to read the MOS article and listen to the interviews. Here are the links -

Mail On Sunday Article

Talk Radio Interview - Parry & Graham with Wickes

3 Counties Radio Interview - Breakfast Show

I would just like to correct a few mistakes in the article, that have been carried through to the interviews. Firstly I was born in 1965 (never lie about my age, just never see the point), secondly I went into my chair at the age of 15, and thirdly I have already undergone the surgery that gave me my legs back. The operations that I was offered to see if I could walk again are to repair damage that years of being a wheelchair user has caused. I would need a right hip replacement, then a new knee and ankle. The hip surgery would mean two months with a stretching device fitted to an open wound on my hip, as I would need to move the muscles, ligaments and nerves in my hip to allow the new hip to fit correctly. So after three huge surgical procedures, and all the recovery time they would bring (not to mention that each one might go wrong and cause me to loose my leg) I would have to go through between 5 and 10 years of physiotherapy. OK, some people might still think it was worth it, but even then no one could swear I would be able to walk. Oh, and I would need the replacement joints replacing every five to ten years too. I think most people will agree, not that much of a difficult choice.

The reason why I wanted to publicize it was the fact that so many able bodied people just could not understand why I wasn't going to go for it. I also wanted to voice the fact that disabled people can have fantastic lives, and that we do not all dream of being cured. I have been amazed by some of the responses I have received since all this went out, including the number of people insisting that I better not be getting any benefits if I am choosing to stay disabled. Of course by not going through all this surgery I am actually saving the NHS millions. The hip was going to cost £150,000 - £200,000 alone, and that's without the cost of the medical staff, hospital stays and other costs. Scary to think that some people see the point of this story to be the cost to the "tax payer". I think it has wider implications than that myself, but hey who am I to argue?

I don't think the press has finished with yet. I have been contacted by a few other publications and media shows for interviews, so hopefully this will lead to me getting across the truth behind disability. The main reason why it effects our lives is not because we have something "wrong with us" but because that world isn't set up to allow us to have the same chances as the "able bodied". Even with those barriers, we live lives that are the envy of most AB's and many like myself see their disability as something that set them free.

So watch this space.

Wednesday, 6 October 2010

Anatomy Of Addiction

While I am out of the woods on the pain front at the minute, the drugs I took to cope with my last episode has left me thinking about addiction. You see I am currently going through withdrawal from high doses of Codeine, which is a medical grade drug and similar to Morphine. As we all know Morphine is what the medical profession call Heroin, so this type of pain killer is highly addictive. So I hope you can imagine what fun I am having right now. If not, let me explain.

We currently live in a society where the word addiction is used a bit too freely. People claim to be hooked on shopping, sex and even chocolate. Now I don't want to be too insulting about these claims (actually I do but I won't) but at the most these people are addicted to the rush gained by indulging in their "habit". It is the same as people who claim to be gambling addicts. The endorphine rush gained by risky behaviours like gambling is greater than that of shopping, but it is still only enjoying the chemical high that endorphins release. These types of addiction are really just a case of not being able to resist something that is enjoyable. Even the crushing tragedy of gambling and the damage it does to families is only fed by the need for the rush and misguided belief that "this time I'll win". Whatever people in the field of trouble gamblers say, it is not the same as needing a substance that alters the way your body functions physically.

Using substances such as drugs and alcohol over a long period lead to a change in the way the body works, and mean that any user reaches a point where they need that substance to function normally. While recreational drugs and alcohol are things you normally start taking for fun and then fall into addiction, pain killing drugs are something that you have to take. Annoyingly they are also very addictive. Really really annoyingly the way they manifest this addiction is to lessen your ability to cope with pain and when you want to come off them they make your brain create false pain. So I end up with bad headaches and aching wrists. Mostly. Of course many other "phantom" pains can manifest themselves. Today I have stomach cramps. But that could be part of another fun side effect of coming off Codeine, tummy upsets. Opiates bung you up big time, but as your body gets used to them your body returns to normal. When you come off them you can get all manner of stomach hassles. Sometimes they can be as violent as the poo the bed scene in the film Trainspotting. Nice.

Now every character in Trainspotting took drugs for fun, well at first. Whatever your feelings around recreational drug use, withdrawal is pretty much the same. The body needs the drugs to maintain a normal function, and so you have through the discomfort of the resetting of you body's systems, as well as whatever your body throws at you to get you to take the drugs again. That is what addition is. I think that society needs to focus on this part of the drugs debate when discussing how to make drugs less appealing. The best argument a drugs is that everything has a balance effect. The highs that drugs bring means that the lows will be equally dramatic. When I take my pain killers I know that the effect of lowering the amount of pain, which is nice, will have an equal effect when I stop taking them, which is not nice. But you won't get one effect without the other. It's the same for all physically addictive substances. Luckily I have been taking various types of pain killers since I was 15, and now know what to expect and how to best fight those effects. Not saying it's easy but knowing what is coming does make the process of withdrawal less scary.

Anyway, I have a around a month to go and should be back to being clean. Then all I have to do is hope that my next bought of pain won't happen too quickly. Fingers crossed eh?

Monday, 27 September 2010

Anatomy of Agony

I have finally come out the other end of a period of chronic pain. Spending three weeks coping with a level of pain that meant sleep was impossible, driving would have been very inadvisable and even dressing became too difficult to consider has dramatic effects on both your physical and mental well being. Everyone who suffers from chronic pain has the same experience of this debilitating problem.

Now I have a usual level of pain, caused by a spinal injury, a dislocated right hip, trapped nerves and aging shoulders (one of the joys of using a wheelchair, your shoulders do much more work than they were meant to and so age more quickly). I am used to dealing with this, and have found ways of doing so. Yes, it can be annoying and can mean that I find myself less focused or easily annoyed on a day when the pain is a little more than usual. However, every now and then events conspire to create a massive spike in my pain levels, and then things really do go off the rails.

This time I fractured my ankle, tore a muscle in my back and thus caused a set of trapped nerves to become inflamed. This led to my sensation below my waist to become "hyper-sensitive". Hyper-sensitivity is where all normal feelings and sensations are increased to an almost unbearable level. When it happens I find wearing socks and trousers an agony, so you can imagine what might happen when it combines with a fractured ankle. Stupidly I did all this when trying to find out if I might be able to go back into club DJ-ing. Proof that however much this government might be trying to get disabled people back to work, until the built environment is fully inclusive this ambition is going to be one hell of a struggle. Whatever this event meant politically, personally it was a period of hell.

It started as a niggle in my right ankle and within two hours had grown to a level of pain that had me screaming the house down. My poor neighbours, they must have thought someone was murdering me. It felt they were to me. Pain is strange. When it takes hold it almost has a physical presence. I know when I had broken my back for the second time in 1999, as my spine collapsed the pain took on a physical element. As the nerves to my toes where being crushed I was kept awake by what felt like rats gnawing at my feet. Of course I didn't have rodents eating me, but what was happening was the brain read the different nerve impulses and tried to make sense of them. But not only do situations like this happen, but pain itself feels like a entity has taken hold of your body. Especially terrifying as I could not feel my feet at this time. I know have full feeling below my waist, but at times of extreme pain this is not a boon. Oh no.

I will admit I have a strange relationship with my body. It has been the cause of many problems in my life, and so I do tend to feel that "I" live in my body and we are at constant battle. It's how I have overcome many illnesses and debilitating physical problems. I battle them and my body equally. It never wins. When this hyper-pain strikes it isn't my body that is fighting me yet again, it feels like something else. Like an dark entity takes over and it is trying to break me using pain as a weapon.

All this might sound like it is taking on a spiritual element but it is more that the way the brain struggles to cope with situations like this are what has led to our need to find supernatural reasons and causes. I know there isn't an evil spirit taking over my body, and that it is a purely physical function of pain, it does feel like you are battling something "other". I am sure that this is something that evolved to enable us to fight back, by battling against this entity instead of our own bodies. And it is a battle. Many times in the last weeks I have found myself unable to continue. Yet continue I must, and did. I also won. I always have. I always will.

During the moments where I feel the battle is too much to continue, I have an insight into those people who want euthanasia. Yet I know in my heart I will prevail, and so it saddens me. During the huge internal battle against this pain monster, I regularly am struck with tragedy of those who want to die, and especially those who do. I know how easy it would be to bow out, and what a relief it would be too. But there is no way I will go without a fight. Once the battle is over I know I was right.

I don't know why I felt I should write this blog. I just wanted to put out into the ether my thoughts on pain and how it effects you. Everyone I have spoken to who suffers from chronic pain has a similar experience of it. Those who have continuous chronic pain seem to cope better on a day to day basis, thanks to finding mechanisms of treating the pain via various ways, but they do find that the pain gets to them eventually, whether it is physically or mentally. I know I am lucky. I have these periods ever six months to a year, and while they are terrifying while they last, once they are over I can go back to my usual pain and my usual life. Yes even my usual pain does effect the way I live, but it doesn't stop me dead.

All of us that has pain as part of their disability knows how little that is considered by the greater public. No one looks at someone like me and even thinks of pain. In fact feeling isn't normally something people associate with paraplegia! Many conditions that are hidden disabilities have pain within them. One day I hope that the public, and especially the government, understand how pain effects ones life and might even start to find ways of helping us fight the spectre of pain.

Sunday, 19 September 2010

Catch up rant no.1

Well I'm finally out of the pain woods. I am still having twinges in my right ankle but they are nothing to worry about. The last two weeks have been a bloody nightmare. It gave me an insight into torture and how it can break you. The combination of sever pain and lack of sleep really sent me nuts, and nearly did break me. But only nearly! Annoyingly I used to be better at handling pain, but after my last spine operation, and the spinal injury it fixed that caused four years of excruciating agony, my pain threshold has dropped somewhat. But then a fractured ankle, torn back, trapped nerves and twisted dislocated hip are quite painful, so I shouldn't knock myself too much. And I got them all DJing in a Goth club. That'll teach me. Great club though. If you like you clubbing dark and Gothic visit Club Antichrist.

Club Antichrist

But enough with my moaning about which bits of me have fallen off this month. By not writing a blog for a while I have few things that feel I need to talk about. Firstly I must repeat my congratulations to Channel 4 on their Paralympic coverage. I caught another episode of That Paralympic Show and it blew me away. I absolutely loved the Pimp My Chair section and really feel the show is hitting the spot. Whenever C4 put their mind to making a show aimed at disabled young people, as well as a wider audience, they hit the spot. This will sound big headed but TPS is as good as the show I did with C4 back in the early 90's, Beat That. Both shows talk to kids in a grown up way and make disability normal. C4 just seems to know how to appeal to disabled youth without alienating everyone else. Well done to everyone involved.

That Paralympic Show

Enough of Happy Mik. Here's Cross Mik. The first thing that made my blood boil is the content of the speeches the Pope has made during his UK visit. OK, I am an Atheist so I might be biased, but as this is a state visit I am shocked that the Pope feels he has the right to make the theme of his visit a criticism of our secular society. What other head of state would go on a state visit to a sovereign country and feel that they can condemn the way it decides to run itself? The UK is a proud secular democracy, and the laws and rules we live by allow people of all beliefs to live their lives in freedom. Being secular allows all religions to be practiced freely. We even finance faith schools, even if they insist on teaching that faith as fact and thus put their pupils at a disadvantage. Their exam results might be high, but giving beliefs that same educational value as facts could only happen in a secular society like ours. Well, that and a religious dictatorship. But it would only be one faith that would be allowed and not the multitude of religions that flourish here in the UK. Let's face it, it was only our society becoming more secular that allowed Catholicism to be accepted.

I have never understood why religions seem to be unable to absorb scientific break throughs into their doctrine. I mean Evolution could be said to be the mechanism that God used to make Humankind, and that his hand was at play in placing the Earth in the sweet spot in our Solar System that allowed life to evolve. But no, all advances in our knowledge are seen in the same way. Damaging to the faith. Contradicting dogma. Now it seems that more and more religions are trying to increase the influence they have on how we run our country. This worries me greatly, and those of us who believe a secular society is the only rational way forward must make our voices as loud as those who are religious. We must not allow people like the Pope to use their public voice and huge following to curtail our freedoms and rights. Otherwise the very tolerance of a secular society that may lead to it's down fall.

Another bug bear lately is the way the London Fire Brigade is planning to impose new contracts on London Firefighters under the threat of being sacked if they do not take them up. The current work practices make total sense to me. Two nine hour days, then two fifteen hour nights followed by break seems the obvious way to go. In the day the firemen have many other duties as well as saving lives. So the day is shorter, so they are fit if they are needed in an emergency. Then two nights where these brave people have a longer shift, and during which they only have to concern themselves with saving lives. But no, the LFB wants to change that to a new shift pattern. Well not change it, enforce it. "Sign your new contracts or be sacked". What is this, Nazi Germany or Communist Russia? Contracts are legally binding documents and to alter them requires agreement from both sides, by law. Whatever the need to make cuts, any good manager knows they have to get their workers on board. Taking draconian action like this is crazy. I know I shall be supporting the Firefighters all the way.

The only ray of hope out of way our country is going right now, is that the UK may finally go back to being politically active. It won't be long before we learn how screwed we all going to be by the up and coming cuts in services and benefits, and I'm pretty sure they are going to make Thatcherism look like a picnic. I am keeping my fingers crossed that the fact that the poorest are being expected to pay for the bills run up by the richest will make people get out and protest. I know I'll be there on the barricades.

Well my blog has definitely gone all radical this time, that's for sure.

Tuesday, 14 September 2010

Still Ill

Hi there everyone.

No big rant today. Just a very short note to say sorry for going quiet. I've been struck down an attack of nerve pain that has stopped me from doing anything. Been laying in bed going OUCH!!!!! for nearly a week. It's finally stopped now, but I still have to withdraw from the pain killers I need to take during these attacks.

The doctors never tell you about these hassles when you go into a chair, and they sure has hell don't tell you that getting back your feeling will make them worse! I can honestly say that this week has been like being tortured. So if anyone in the secret service reads this, I know I would make a great spy. If I was captured then nothing any torturer could throw at me would beat what my body hands out. I tell them nothing! Ha ha.

So hopefully I'll be back to blogging in a few days, once the fog of Codeine and Morphine lifts. Groovy man.

Monday, 30 August 2010

The Paralympics, the Portrayal and another word beginning with P.

This week all of TV land has marked two years to go before the launch of the Paralympics with massive coverage of the event. Most London news programs spent the week featuring stories on Paralympic sports and the start of the build up to the historic event, and Channel 4 launched two shows that marked the beginning of it's exclusive coverage of the Paralympics in 2012.

Now I've never been a big sports nut. Partly due to my interests being much more focused on artistic pursuits and partly as I have always found the sports fraternity's obsession with impairment and over coming the physical side of their disability via physical activity a little off putting. So I watched all of the coverage ready to be let down. However I was actually really impressed. Yes some of the local news coverage was awful, with the usual patronising interviewers and scripts, but all in all even I found myself hooked to sports TV. Amazing.

The first dedicated show I watched was That Paralympic Show. This program wasn't exactly my cup of tea, but I could see it was aimed at a younger audience and I am sure it succeeded in getting it's target viewers excited by Paralympic sport. I don't usually enjoy watching those shows where celebrities have a go a being disabled, but getting Alex Reid, the kick boxing husband of Jordan, to have a go at Dressage kind of made sense. Whatever I felt I could see the show tapped into today's celebrity obsessed youth and might play a role in changing how young people see disabled people. And it had Ade in it so it had to be good.

That Paralympic Show

The next part of C4's Paralympic build up was their flagship program Inside Incredible Athletes. When I read what this show was about I cringed. With it's focus heavily on impairment and I dreaded how bad this show was going to be. Boy was I wrong. Yes, it did have it's moments where my toes curled, but whether any of us politically aware disabled types like it or not disability sport does have to focus on what is physically different with the people taking part. Add this to the fact that many people in the disability sports world are fairly new to their disability and it is easy to see why it can seem little too impairment driven in it's focus. However much the computer graphics explaining how various Paralympic stars disabilities played a part in their excellence really did ignore some of the politics of disability (Medical Model vs Social Model and all that), the superb way the sports where shot and explained more than made up for it. In fact I will go as far as to say that there were moments when even I got excited by the sports covered on the show, and that really is amazing. By the end of the show I was really looking forward to seeing how C4 will cover the event, and to watching more of their coverage in the run up to the Paralympics. I even found myself wanting to find out how to take up a sport. Maybe Dressage! (Wheelchair rugby is just too dangerous for this wuss!)

Inside Incredible Athletes

Sadly not all the coverage of disability this week was good. We were let down by drama. The BBC comedy crime drama show Vexed featured a story line where a wheelchair using criminal kidnapped a pop star and ransomed her, using how disabled people are thought of as incapable to get away with it. But it wasn't another storyline where the baddie was a cripple that upset me. No it was the fact that another role for a disabled actor went to an able bodied thespian. Actor Dylan Brown, best known as the vampire Seth in Being Human, played John Paul the episodes comedy bad guy. I have to ask myself why do these able bodied actors see nothing wrong with playing disabled? Would they black up and go "I am de black maan"? I very much doubt it. I even auditioned for this part, but was told I looked too able bodied for the character. Well not as able bodied as some who was bloody able bodied! Time after time I hear from casting directors that there isn't enough disabled talent out there, but surely this kind of show is where disabled actors learn their skill? I mean it's not like the show was an acting master class or anything. A cameo role like this is exactly where up and coming disabled actors hone their skills. Not only that but having disabled talent playing disabled characters makes the show more valid. A real missed opportunity.


So on the whole a great week for disabled people and the media. Hopefully the creative and exciting way disability is being covered C4's sports output will change the way disability is portrayed through out the TV and film industry. Fingers crossed eh?

Wednesday, 25 August 2010

Cured By Mistake... The truth behind the headlines

In this months Disability Now magazine I have an article that focuses on what happened to me after my last spinal surgery in 2003 (Choosing To Sit Tight, DN issue 34 P45) and since it came out I have had a lot of interest from various publications wanting to know follow up on the story. However I found that many people did not really understand what the article was about. So I felt I should fully explain.

It all started in 1999, when I was involved in a major car accident. The accident left me with a damaged shoulder, which when you're a wheelchair user can be a real hassle, as well as an increasing problem with back pain. After a few years of examinations, the surgical team at the RNOH Stanmore discovered that I had broken my back. Of course as I was already Paraplegic it was quite hard to spot. My spinal had been left in state after it had collapsed back in 1981, so it was understandable that the new damage was so hard to find. The break was vertical too, and not the usual horizontal type. So my spine was slowly collapsing on itself. This as causing all the pain, as well as changes in the bits that did function below the original break. It took a further year or two before a surgeon decided he would try to fix the break. So in 2003 I had a 15 hour operation, where my surgeon (Mr Ben Taylor) removed one of my vertebrae and replaced it with a titanium ring, and supported my spine with two titanium rods that run from the bottom of my rib cage to the top of my hips. During the surgery Mr Taylor also removed any old scar tissue and used a new technique to ensure much less new scar tissue formed after the op.

After six months on bed rest I got up to find that I had regained feeling in my legs. Ever since I had woken up six months earlier I had been worried about weird sensations where I thought my legs should be, and as soon as put my feet on the floor after so long in bed I discovered that I could feel again when I felt the floor under my once numb feet. Slowly I noticed movement coming back too. As it became clear that something had happened during my surgery that had allowed nerves to come back, the discussions began about walking again. It wasn't going to be like you see in the movies or in the soaps, and after a few weeks in the physiotherapy rooms I would be up and walking. No I needed a series of surgeries to replace my right hip, that had been damaged during one of my 1981 operations, as well as a replacement knee and ankle, as they had poor bone density caused by over 20 years in a wheelchair. Even after all that I would probably need to spend nearly a decade in physiotherapy to get my muscles back to full strength. So I would be around 50 before I might be able to walk. And it was just a might. With all this to go through just to get out of my chair I turned it all down. Most people in my life were totally freaked out by this decision, except my wife. She knew how much I felt that if I did go ahead I was being a traitor to other disabled people, and we both didn't see the point of going through so much to see if I might walk.

Now this is where the story in DN, and the BBC TV documentary, Can Walk, Won't Walk, ended. But there is much more to finding that nerves that have been dead for years now work. Not only do most people who hear what has happened find the idea hard to believe, but they also don't understand that after so long as a Paraplegic your body adapts to it's new way of working. To expect it to go back to working as it was indented quickly is fool hardy. In fact there have been many times in the last 7 years when I wished I was still the way I was before the op.

You see getting back your feeling is OK, but the thing I feel most regularly is pain. The hip that is damaged hurts all the time, so does my permanently fractured right ankle. I got that joining in with PE at school when I was 14. It had healed but broke again during the years in my chair. So that's a broken ankle and dislocated hip. All day, every day. Then there's strains, pulls and injured toes, when I smash in to walls and doors, which all wheelchair users do from time to time. The most maddening thing is that I now can feel some functions that are normally ignored by your brain. Things like food passing through my guts. Sounds weird, but I guess that bits of my middle had lost feeling, and now it's come back my brain isn't used to filtering it out. And of course the spasms your get with an injured spine now hurt like hell too. As well as all that, I also have a real problem with the way my body feels. My left leg feels really long, as I am six foot three, but my right leg feels tiny. They are almost the same length, but the body map your brain creates has decided that they are different lengths. So being cured had caused me tons of pain, and a body that feels like Quaimodo's. Great. Oh, and I can feel how numb my arse gets sitting in a wheelchair all day.

This is what annoys me about those people who go on about curing Paraplegia. Unless they find a way of fixing it just after the injury, it isn't just a case of making nerves work again. There are a pile of other things that need putting right too. Surely there should be equal focus on making the world a more accessible place, and making society see disability as just part of life's rich tapestry. I am sure that most people who have had a spinal injury for quite a while would find themselves in a similar position to me. Yeah it sounds great, and I am sure many people dream of a cure, but the reality can be more of a nightmare.

At the end of the day, I have spent all of my life being at the cutting edge of medicine. Many times I have had experimental surgeries or treatments and know that in time they lead to great things. While some of the elements of my surgery may lead to ways of fixing spinal injury in the future, they are a long way off yet. Trust me.

Friday, 20 August 2010

Positive Blog No. 1

I think I can safely say I may have over reacted in my last Blog (Fame... makes a man think things over). I am sure it was partly to do with the approach of my 45th birthday, which turned out to be a great day spent that I spent with my lovely wife. It's funny but I have always found myself reacting in dramatic style to land mark birthdays. Maybe it's because life does seem to store up major events for key ages in my life.

Let's see. It started with birth. I was found to have a rare cancer, Adrenal Neuroblastoma, at six weeks old. I had been born with it, but it had been missed in hospital. So I under went years of treatment and was very lucky to survive it. Then at the age of five, I was given the all clear of this very serious type of cancer. But the celebrations didn't last long as a few months later my father died of a heart attack. At the age of fifteen, the age at which I was declared totally cured of cancer, my spine collapsed. It fell apart at Gary Numan's farewell concert at Wembley Arena, which kind of ruined the whole thing for me I can tell you, but completely collapsed the next morning. This was the day of my first exam. German "O" level. (No way was I going to spend a night studying for an exam when Gary Numan was playing!) I was rushed to hospital, and my school sent a teacher to sit with me while I took my exam. Strange as everyone thought I had cancer again and was going to die. Luckily I didn't, but it meant I spent two months in a terminal ward. That made me grow up quickly I can tell you.

It took quite a while for me to recover from this set back, and during this time I became an extreme New-Romantic (check out my website for photos). I spent my late teens looking like an alien clown. As my 21st birthday grew near, I suddenly felt the need to grow up. I dyed my hair brown, grew a beard and got a real job. This lasted until I hit 21, when I realised I didn't feel any different and went back to being a weirdo. Then I got sacked from my job, after I broke my toe in their lift. I decided to pursue a career in music. I swore that if I wasn't doing it professionally by 25 I quit.

As the age of 25 reared it's head, I was discovered by a TV producer and started my career on TV. This rolled on and I grew to be quite successful and well know. As I hit 30 (on my 30th birthday actually) I finally got together with my wife Diane. At 35 I had the car accident that broke my back for the second time. At the age of 40 I got married and I had to choose whether to have further operations to allow me to walk again. I turned them down, as I didn't think the surgery and years of phsyio with only a chance of walking again was worth it. I am also a very proud disabled person. The wedding was fantastic!

And that brings me to 45. This really is the middle of your life nowadays. Making it to 90 is pretty likely, so I now have exactly the same amount of life ahead of me as I have had behind me. I really did start to wonder what life had in store for me this time. As the big day approached I started to get worried, but now it has hit I feel fine again. 45 years is a blooming long while. Can fit a lot of living into that. Whatever event life has in store for me, I will beat it as I have every time before.

So please ignore my last blog. Put it down the strange fact that once you start a blog, you can put fleeting emotions out there for all the world to read. Today I feel great, and ready to face the world. Who says how I'll feel tomorrow?

(Just read this back. This is SO self indulgent. But hey, what else are blogs for?)

Tuesday, 17 August 2010

Fame... makes a man think things over

As I hurtle towards my 45th birthday, I've had a weird week. I wonder if I might be about to hit my mid-life crisis. Let me explain.It began with a visit to my chemist. While queuing to collect a prescription, another member of the queue turned to me and said

"You live in the same street as me. I see you wheeling up and down the road... oh and of course I saw you on TV" That's nice, I thought, still being recognised.

"Yeah" I said.

"You used to be more handsome back then" was then next comment.

"Nah" I replied "Just younger". We went back to queuing and smiling at each other. My smile hiding just how much a throw away comment can hurt.

Now fame is weird. Once people feel like they know you, which is one of the side effects of being let in their home via their TV screen, they feel they can say whatever they like to you. Can you imagine going up to someone in the street and informing them that they are looking uglier than they used to be years ago? No, neither can I. Yet it happens all the time. A few months ago while in Boots (I seem to spend too much time in chemists - although this time it was for hair care products, which I obviously spend a fortune on) a woman said hello and then informed me of how fat I had got. OK I know I've spread with age, but she was... huge! So surely she must know ow it feels to be called fat by strangers. Yet fame meant this was fine.

When I was at the peak of my celebrity, way back in the 90's, I had all manner of problems. People would just come up and insult and even attack me or even worse, attack my loved ones. I even had a stalker, who threatened to kidnap and rape me. Nice. The most annoying thing was that all the time I was presenting the TV shows that meant the public felt they owned me, I was being paid well under the going rate. (Too many TV companies had the attitude that disabled talent deserved less pay. In a business where people can get paid £100,000s per show I was lucky if I got £100s per series. I would have earned more if I stacked shelves in any famous Supermarket) So I couldn't afford the security that I really needed. Hence way I started going to private members clubs and the like. To be safe.

But why, if fame was so bad, did I continue? Why am I still fighting to get back into the media world? Well fame has it's up side too. No it's not all models and parties, although there were a few. The best thing about fame is being taken notice of.

For ages now I have been trying to get Camden council to wake up to it's responsibilities around access for disabled people in the borough. This week the local paper, the Camden New Journal, ran a story about experiences and my blogs on the issue. Since the article, I have been contacted a councillor who wants to start up a committee to examine what an be done to improve Camden and it's access. Now if I wasn't "Mik Scarlet - Broadcaster and Journalist" would the local paper written the story and would the council have taken notice?

And that's my mid-life crisis. I feel I am at a cross roads in my life. The media always focus on new talent, as the current search for presenters to work on the Paralympics demonstrate, and I could never be considered "new". I have had to take years off from working to recover from my spine surgery back in 2003, and even though I feel I am ready to go back to work, will I be able to get back into an industry that everyone knows is almost impossible to break into? Especially if you already used to be in it! The other factor is do I want to anyway? As I have already said, fame is no picnic, and the rewards are not always that great.

I know I have gained many skills through my time as a musician and broadcaster that would apply to many other professions. I keep asking myself is it time to grow up and stop seeking a way back into the media. Are the rewards of fame worth all the hassles?

So what would you do, dear reader? Do you think there's a Mik shaped hole in your TV viewing? Do you think I should fight to fill it, or go out and get a real job? I really need your advice.

Thursday, 12 August 2010

Still here

Believe it or not the reason why I haven't blogged for a while is because I haven't much to blog about. I haven't gone crazy about bad access and gone postal, although the local paper, the CNJ, is going to write an article about my experience of access in Camden, or sunk into a black depression or anything. I spent this week either recovering from a heavy weekend, thanks to our friends Eve and Ashley, stuck in an MRI machine, being scanned within an inch of my life, or at an audition. I won't say anything about that in case I jinx it. So I've been a bit too busy to find something to write my usual rant about. Amazing huh?
Next week is my 45th birthday, so I will probably have something to complain about there. I mean... 45! So watch this space for stories of age and falling apart.

Monday, 2 August 2010

Left on the outside... again!

Well I might want my blog not be focused just on disability, but it seems life keeps pulling me back to the subject. Today I have been made to feel the way I did about my disability when I first started using my chair back in 1981, excluded and second best.

This morning I decided that I have hit that age where I need to start visiting the gym to fight the joys of getting old. I wheeled up to the Mornington Crescent Leisure Centre in Camden, ready to join up a get fit. I had already visited it twice before. The first time I was turned away as they had no wheelchair access. However they were about to undergo a refit and access was going to sorted during that. I was a bit shocked that in the 21st century there could be sports centres that still weren't accessible. So much for Sport For All eh? The second time, I was turned away as the ramp was broken. Yes it seems that access has not been built into the centre, but instead they got a temporary ramp that would be put out if anyone on wheels needed to get in. Not an inclusive solution, but one just about fits the current laws. I was told that next time it would be fixed and that I would not need to ring ahead, and so with this in mind my wife and I set out for visit number three.

While I sat around outside, my wife went inside to get the ramp organised. After a short while I could hear my wife talking and instantly knew she was upset. She was not shouting or anything like that, but when you've been with someone for nearly 15 years you just know. I could also tell that she was trying to keep whoever she was talking to from going outside to talk to me, to prevent the fire works that she was sure might ensue. However the door to the centre opened and my wife and a member of staff appeared still deep in discussion. I was informed that the ramp was unavailable to me at present as it was stored in a room where a class was in session. The staff member begrudgingly said she would get it from the room, as long as we understood it would disrupt the class. My wife tried to point out that it was not our problem and this kind of emotional black mail was very unfair. I tried to keep my fury under control, kind of failed and told the member of staff that I would not want to come into any venue that made me feel so excluded. We left and walked away with me shouting like a mad man. Sorry to anyone who saw a peroxide haired crazy wheeling down Arlington Road around 11am.

I hope that anyone reading this can understand why I was so cross. Why do people think it is OK to treat disabled people this way. It was nothing to do with me where the ramp was, what was happening in that room or what trouble getting it might cause. The ramp should have been easy to hand and where ever it was, it should have been fetched with a smile. I have as much right to enter this sports centre as the people in the class have not to be interrupted, and I sure as hell have the right not to be made to feel guilty for wanting to use the place. Time and time again I am facing this attitude. To be excluded from things able bodied people take for granted really gets to you after a while. But to be made to feel guilty for feeling upset about it cuts to the core. Especially when you trying to get into a council run amenity, that is there for everyone. The maddest thing about this is that this centre has accessible gym equipment, but doesn't have level access. Who the hell thought this was a good idea?

For all of my adult life I have been a wheelchair user, and have been massively of proud of being one. The early years where spent getting used to my new life on wheels and fighting to get places in my home town of Luton more accessible. Back then it was the norm not to have access, but people really wanted to get it right. I had quite a good success rate, and slowly the town became quite a good place to live for us wheelies. Typically I then moved to London for the night life and for my career. Of course London is actually like a series of smaller towns all connected together. The first borough I lived wasn't too bad, and it got better during the period I lived there. The same happened in the second borough. Even in central London, which is not the most accessible place on Earth, everyone I met really wanted to get you in. So I was allowed into places that appeared to be totally inaccessible, thanks to helpful staff and my ability to crawl up and down stairs. Nothing could stop from a good time! Seeing that disabled people wanted to get into their venues made the owners want to make sure they were as accessible as was possible. Things did take a few steps back when the DDA came into law, but slowly we getting back to where we was before everyone ran scared from the new law.

Then a few years back I moved to Camden. In my blog of July 18th I wrote about how Camden seems to going backwards on the issue of access. I can honestly say that I have never lived anywhere that makes me feel so excluded on a daily basis. I am growing to hate where I live, and I am sure you will agree that Camden council, it's staff and residents should hang their heads in shame about that. What upsets me the most is the fact that Camden has become a place where disabled people should either put up and shut up, or fight for rights that they should now be entitled to by law. I have only lived here for around five years, and this constant battle to live a normal life is really starting to get me down. I almost never go out in Camden, a place I once spent almost every night of my life in as I am sick of being turned away from places due to poor access, of never knowing if somewhere that was accessible last week is still accessible this week and of being treated as if expecting the same service and experience of living here as I would get if I could walk is unreasonable and demanding.

To be honest I am so sick I being angry about this, and feeling the need to write about it. I am sure you are sick of reading about it too. I will try to write about something else next blog. But if my blog seems to go quiet, watch the news. I may have cracked and gone postal on Camden's inaccessible arse! (Joke... ???)

Saturday, 31 July 2010

A visit to Cambridge - what a difference a day makes.

This week my wife Diane and I spent a day in Cambridge. We went there to have a look round as it is one of the places Diane would like to study for her doctorate in Physics. It is a lovely city and we had a great time wondering round it's historic streets and strolling through it's colleges. One of the high points for me was the Fitzwilliam Museum. It's funny, that while it is a smaller museum than many of the ones we visit here in London, the quality of it's exhibits are superb. The Egyptian rooms were especially great, filled with wonderful artefacts that gave a real insight into what life was like back then.

While we were walking around the pottery and ceramics rooms we met a friendly and charming guide called Sam. We started talking and he gave us a real insight into what studying at Cambridge would be like. He had studied there for his degree into Philosophy, and he was about to go to Durham to do his masters. Funnily Diane had just come back from studying up there and so the conversation deepened. At some point Sam asked me what I did, more out of courtesy I think as I had obviously less to say in this conversation of academics - being the "blonde" in my relationship - and so I gave him a potted history of Mik. Of course he had never seen me on TV, but then I guess that at no point in his studies did he feel the need to combine Philosophy with kids TV or disability magazine shows. However when I started talking about my writing we found that his Philosophy studies and the subjects I wrote about crossed over.

Eventually we got to the big Philosophical subject of the minute for disabled people, assisted suicide, euthanasia and mercy killing. We chatted about what society seemed to think, what I felt and what Sam's studies and beliefs had led him to believe about the issue. He was very anti-abortion, and while both Diane and myself are pro-choice, we soon reached an agreement that the problem with this issue of terminating life was lack of information. Sam thought that abortion was like destroying beautiful objects, like the ones we were surrounded with. While the status of a foetus could be open to debate, it was still something to be cherished, and so should not be destroyed. We felt that while this was correct, the person carrying the foetus should have the choice. I brought up the problem of aborting disabled foetuses, and how I believed that this was wrong, and realised that I might be arguing for both camps. This made me see that maybe my stand point might be wrong, and that I needed to re-examine where I stood on abortion. I hope that our discussion made Sam revalue his more pro stand on euthanasia too.

The main thing to come out of this exchange was the realisation that disability and it's ramifications are not part of academic study. While there is the subject of disability studies, and it is included in some other subjects, there isn't enough literature on the topic to ensure that any discussion around disability can be carried out from a position of knowledge. I know from my own experience that some subjects are still teaching theories about disability that are years out of date.

Up until earlier this year I was taking a Psychology degree, but when we got to the area of the psychology of identity I found I had a problem. The way identity was explored was using the identity of disability. Ha, I thought, this will be an easy module. As I began studying however, I found that the only model of disability being used was the medical one. Time and time again, disabled people were described and described themselves via their medical conditions. While I understood how a subject like Psychology would have an interest in the medical aspects of disability, I could not see why the social model and how society makes our physical differences disable us was totally excluded. Surely when exploring the psychology of identity the two models were of massive importance, especially as they have changed how disabled people see themselves, which is pretty much what identity is. When I raised this issue with my tutor, well lets just say I am no longer of uni.

But of course, if there are a small number of publications that explore disability at an academic level, how can academia start to understand how disability colours so many areas of study? Not just the obvious but everything. So many historic figures had disabilities, yet we hear little about that. Julius Caesar was an epileptic, and his desire to hide this from the Roman people led him to form close bonds with all who worked for him. Hence why he treated them so well, and why they felt such a bond with him. This was one of the reasons why he rose to be the leader of the Roman Empire - and he is just one figure of many. (Any TV producers out there, I have a TV show I have researched on this subject that would be a fantastic show). How has disability influenced the world and how we are?

With this question in mind I am planning to research and write a book exploring disability and it's many facets. I want to cover the many issues surrounding disability and gather views and experiences of disabled people through out the country and of all ages. I want to create a reference point that can be used by everyone to explore how disability effects the world we live in, and how it effects us. So if there is anyone out there who would be prepared to be interviewed by me could you please contact me via my website? The book is in the planning stages but if you feel you would like to contribute, please just drop me a line and we can take it from there.