Proud to be a Freak!

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

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

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

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

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

I am a Freak and Proud!Link

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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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