A New Year call to arms

I hope you all had a fantastic festive season, and a humdinger of a new year. I know I’ve only just about recovered from the NYE partying. Of course that is more a sign of increasing old age than a good time nowadays.

While I was almost comatose on the sofa over the New Year weekend, my wife really got into watching the repeat (not re-run) of the series Downtown Abbey. Even though just the thought of the show cut me to the core, as a rabid socialist, I did find myself sucked in. Damn you Julian Fellowes! At certain points I did find myself shouting “Kill them all in their sleep!” at the screen, as my revolutionary zeal grew watching the privileged ruling class complain at their tiny problems, but for most of the show I let the fictionalised frolics do their job. Nice easy recovery TV, that spanned a three day recovery. However at the end of the series the First World War is announced, and I found myself shedding a tear. Not for the fictional TV people, but for the total waste of life that all viewers knew was coming. Especially as that war was really caused by an argument about who should have the most boats between two of Queen Victoria’s offspring, yet it would be the people at the bottom that paid the price. The horror of that war, and the scars it caused led eventually to the Second World war, where even more lives were lost. I fully admit that WW2 was a valid war, to put a stop to the evil of Nazism, it is sad to think that while both world wars were hailed as wars to end all wars there has been a war going on somewhere in the world ever since VJ day.

Don’t get me wrong. Yes I do believe that war is wrong and they could all be avoided if those who ruled over us talked, but I also truly support all of the troops who fight wars. They are expected to do and see things that the rest of us can’t even begin to imagine. I myself have worked with soldiers on and off ever since the first gulf war, especially those who returned disabled. I have always been amazed at their resilience and strength. This is what this blog is really about. As we enter 2011, we know that this year the government’s cuts will begin to bite, and there are battles ahead around how disabled people are to be supported. I am getting involved in working with the government to try to ensure that some the extreme ideas they have put forward are reconsidered and that eventually we end up with proposals that do not put disabled people at a disadvantage.

I wanted to put out a call to arms to any soldiers that have returned with a disability to join the battle. You more than anyone, deserve to be secure in your new life and these entitlements that disabled people have spent years fighting for should be there for you all too. I understand that early on in the readjustment to a new disability, most people want to fight to be as “normal” as possible. Sometimes receiving benefits can make a person feel less than normal. These benefits are there to make sure that disabled people can lead normal lives. One day our fight for equality will pay off and we won’t need these benefits, but we are a hell of a long way off yet. Just go down any high street to see inaccessible buildings, or try to use public transport, or get a job, or… the list goes on. Of course we want equality, but while we work towards that we do need support.

Now I don’t want to go mad on the histrionics, but I have always found disabled soldiers to be the kind of people the disabled movement needs, and as we go into a year where that movement may need to be very proactive, you guys will be essential to ensuring we don’t loose out. If anyone reading this does want to get involved contact a local campaigning group for details of how.

My next blog will give details of what is being proposed and where to go for more info.

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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.

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Television & Disability – The Mik Scarlet Lecture – Part 1

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

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

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

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

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

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

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

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

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

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

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

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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.

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