Epithany

I am writing this at 5.15am after laying in bed watching the green numbers on my bedside clock inexorably click forward for many hours, my head full of thoughts. I found myself unable to sleep after watching the Channel 4 program Katie: My Beautiful Friends, which I was looking forward to(see my last blog for why). However much I wanted to enjoy the show and hoped it would play a part in changing the attitudes towards people who are scarred, the show fell short thanks yet again to the use of language. The old clichés of bravery, courage and inspiration peppered the script, and as I lay there considering why C4 had gone down this road yet again, what I could do to explain why this kind of language is so damaging and who I could contact in the media to make my voice heard, I had a realisation.

Suddenly I not only grasped the reason why this kind of language had such an effect on disabled people but how the use of language tied our minority group to all the other minorities out there and how charities played a massive part in continuing this use of damaging terminology. I have already stated how language effects that way disabled people are thought of in society. The word brave, for instance, when used to describe some who is disabled leads the non disabled to a series of preconceptions about disabled people, their lives and what it is like to be disabled. It also creates fear that if they faced a disability, they might not find the level of bravery within themselves to be able to cope. Both these thought processes lead to a feeling of otherness around disability, and create barriers. As well as that it forces disabled people to either fit into the brave category, and so if they appear to be so by achieving some amazing feat or battling through with a smile or holding down a job then they could be described as a success, but if they do not do any of the above, not only are they not brave but they are also a failure. Language like brave has no room for explanation or exploration of experience. Disabled people face many barriers to opportunity and equality, and these can prevent people from achieving the acts of bravery and inspiration that the media craves from super cripples. In truth this is real experience of disabled people in our society.

I know that I have on occasion done things and acted in such a way that I could be described as brave and inspirational. In fact as I laid there in bed I found that if a described my life in the right way almost every moment of my life could become an inspirational story of courage in the face of adversity and triumph over tragedy. Actually you could do so for every living being on the face of the planet. Not just disabled people but everyone. We all battle against problems, we all face adversity and we all have our victories, no matter how small. You could use the language that is now used to describe disabled people to describe anyone. Especially other minorities. Surely aren’t all ethnic minorities brave and inspirational to exist and succeed in society made up mainly of white people, many of whom are hostile towards people from other races? Doesn’t every member of the LGBT community battle courageously a society of straights that see them as weird and different, and even as wrong and dangerous? Aren’t religious followers inspiring to exist in a society that is turning it’s back on faith? But then surely aren’t those who do not believe also an inspiration as they reject millennia of doctrine? Even though all of these statements could be considered as true, we very rarely hear them used. The media would find itself in hot water if it did so, especially if it did it time and time again.

So why does the media feel it can get away with it when it comes to disability? I think the reasons are two fold. One reason is that there are not many disabled people working in the media at the minute. The majority of people in the media are able bodied, but more than that they are even more obsessed with perfection than society at large. We are always being told how the media plays a role in creating issues with young people around body image due to portrayal and have been recently reminded of the pressure on presenters to stay young looking, so it is obvious how they see and cover those of us who are obviously different. The media also is driven by the need to create stories. How many meetings have I been in where the air is thick with terms like “narrative” and “jeopardy”? They are so focused on whether the story has media impact they ignore it’s wider impact. But then again, how would they know? In an industry with so few disabled people in it, then how will the majority of able bodied media types know what damage something as seemingly innocent as language can do? We all need to make our voices heard about how unhappy the use of this kind of language makes us. We all know what happens if TV presenters use the wrong kind of language about another minority, so why aren’t we kicking up a stink when it happens to us?

I have found recently that the few disabled people that are actually working in the media find it hard to question the way the media portrays disability. Partly as they are ignored, but also because raising the issue can risk their jobs. I know how unpopular I have made myself in the industry on this issue, and know how that has impacted on my career. Maybe if we all shouted as loudly as I do on occasion then we might nip the current slide backwards in the bud. But I digress.

The second reason why words like brave, courageous and inspirational are used so often around disabled people is that this kind of language actually helps some people and institutions. Let’s face it, however much last night’s show was about the issues faced by people with scars it was also about someone trying to start up a charity. Charity needs donations to exist, and no one is going to give money to someone if they are perceived as being just like everyone else. If disabled people are portrayed as either brave and courageous, and so deserve charity as they are so inspirational, or tragic and pathetic, and so desperately need charity and support, then the cash will roll in. Charity is big, big business and charities that help disabled people are major players in this massive industry. So there is an incentive to continue the use of language that dis-empowers disabled people, all in the name of income. I must also admit that during my years in the media, many of my contemporaries have actually started up their own charities. They all claimed to want to help disabled people, and they also felt that it was time that this support should be provided by us and not for us. I have always felt uneasy about going down this path, partly because I feel that there should be no need for charity and partly because I mistrust the motivations behind such an act. However much I want to be believe the good intentions given I can’t help feeling that this is in some way just a route to a more secure income.

Don’t get me wrong, I don’t feel all charities are wrong and evil. I am a patron of the Neuroblastoma Society, who raise money to research into the cancer I had as a child and support those families touched by it, and of the National Association of Bikers with Disabilities, who help get disabled people into biking. I also work closely with the Alliance For Inclusive Education as I believe that all children should attend mainstream schooling, as I myself did. What I do feel is that charities do need to play a more vocal role in fighting to ensure the correct type of language is used when discussing disability. They have to start using their financial muscle and political clout to explain to society as a whole why the language used to describe disabled people can be a major barrier to us, and in turn to everyone. Let’s face it, able bodied people are just us the day before the accident or illness. Disabled people are the only minority to exist in every other group out there. If you get it right for us, then you get it right for every one.

Right, that’s got that off my chest. Back to bed.

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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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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!)

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