How do you like dese tragedy?

Right, it seems that the entire media wants to focus on the tragedy of the disabled, whether we have managed to triumph over it or not. I have always been against this kind of coverage but it seems that people who agree with me are being ignored. So if everyone out there wants to hear the tragedies of disabled people I intend to be on that band wagon. (I do hope you getting the irony here… it doesn’t always work in the written medium)

So where shall I begin? Well at the beginning I suppose. I was born in 1965 to Michael and Joyce McGrath (pictured above). They had been trying to have kids for three years and were overjoyed when they found they had fallen pregnant. When I was born my Dad ran round my home town of Luton shouting with joy, hugging strangers and handing out cigars. But as soon as I came home they began to worry. I just would not stop crying. Nurses and doctors visited and told my Mum she was a panicky parent. This went on for five weeks. Just screaming and screaming. Then I went quiet. My parents rushed me to an aunt who was an ex-nurse and she said something was wrong… very wrong. They took me to hospital and it was soon discovered I had cancer. It was in fact an Adrenal Neuroblastoma, which even today is very difficult to beat. I was extremely lucky, as my surgeon had just read about an experimental drug that was being trialled and he applied to have me put on the trial. So with a major surgery, radical radiotherapy and this new chemotherapy, which lasted for five years, I now faced an uncertain future. In fact my [parents were told not to expect me to live long. “Go home and enjoy the time you have left with him” my Mum was told.

So home I went. That’s me with my Mum, all ill but very loved. I didn’t die though. Obviously. In fact I went from strength to strength. There were hick ups. I got two huge sores on my feet, which nearly killed me with infection, and I broke my right leg almost in half, while trying to pick up a train that I was playing with – kind of forgot I couldn’t walk that well – but when I got to the age of five my parents were told he is in remission. Cancer free. I had a future at last. At which point my Father died, from a heart attack. My Mum had a nervous breakdown and life sort of fell apart. My Dad’s parents were awful, and our lives were thrown into turmoil yet again. My brother came out worst. My Mum had to spend so much time looking after me that Steve had kind of become Dad’s kid. So when Dad suddenly disappeared he couldn’t understand what had happened. Mum tried to explain, but he was so little the “Dad is with Jesus” didn’t help much. So the great news of my beating the big C didn’t matter much once Dad was gone.

I started school and was immediately bullied for being the limpy kid. I fought back, but as anyone who has been the target of the bully knows it’s not fun. When I was eight, my Mum remarried. Now I will admit that by now both Steve and me were horribly spoilt kids, but our new Step Dad was… let’s say very strict. As he is still around I won’t go into it all too deeply, but it wasn’t much fun. But time passed as it does and I was soon nearing an age where I could protect myself. But at the age of fifteen my spine collapsed. It actually happened at Wembley Arena at the farewell gig of my hero Gary Numan. I had great seats, in the fifth row, but had to remove myself to the back as the pain was unbearable. I somehow managed to get myself home and fell into bed. The next day I arose early as it was the day of my German O Level (no I did not spend the night studying – I was a Numanoid!) but when I tried to get out of bed I collapsed into a heap on the floor.

Oh, this is the last picture I had of me standing up. I’m in the middle, with my Mum and brother Steve. Anyway, I was still sent to school in a cab, but when I arrived I collapsed again and was rushed to hospital. While I was there I was told I was dying as I had cancer again. But no it was actually a huge spinal collapse, caused by a side effect of my experimental chemo as a baby. After two major operations (14 and 15 hours), two bouts of MRSA and one heart attack on the operating table I spent nine months in hospital only to leave in a wheelchair. No one told me at this time I wouldn’t walk again, and so I spent three years fighting to get back on my legs. After this time I went to my surgeon to say I was giving up, only to be told I never had any chance but they didn’t tell me that as they didn’t want to depress me. Nice.

Now at this point I feel I should stop. I could go on about being in an abusive relationship for years, or my second broken back just as my career was taking off, just over ten years ago, that nearly killed me and has left me in chronic pain, but I actually want to examine that fact that while this might be read as a list of tragedy it all led me to be the person I am today. And I like who I am, so everything that has happened is must be a good thing. To always go on about how becoming disabled is a tragedy means that nothing good can come of it, and to make anyone disabled who succeeds triumphant means that those who are having a hard time coming to terms with it must be lacking something that those super humans (dig, dig C4) have in spades.

All I know is that my disability has shaped my life hugely, and has allowed me to have experiences that most non-disabled people can only dream of. I have been a TV star, toured with Gary Numan, and lived a rock and roll lifestyle second to none. I then met and later married the girl of my dreams, someone so amazing that she cared for me while I recovered from my second broken back and even made it fun. Yes she made six months on bed rest fun. It may sound weird but I know part of what she loves in me is the person I am because of my disability and so for that, if nothing else, I refuse to see any tragedy in anything illness or disability that has entered my life.

But I could easily make my life a list of one awful event after another. I could have then made a big deal of how brave I’d been to triumph over the crap cards life had dealt me. And the media would have lapped it up, but I just cannot. Instead I will say what I have always said… Disability was the making of me. It set me free and allowed me to live a life that I wouldn’t give up for a second. Not for legs that work, not for being in tip top health, not even if I could fly. My disability is super positive element in my life, and I just wish that the media would focus on how positive being disabled can be. Just once would be nice.

So as you watch the stream of stories over this Paralympic period, try not to be sucked into the feeling that everyone has in some way beaten the worst thing that could ever happen to them. I mean if they weren’t disabled they wouldn’t be at the games, they’d be at home watching them on the TV and missing out on the chance to represent their country in a global sporting event. Disability can be a positive thing and if more people believed this then if it ever came into their lives they might be able to cope better, recover quicker and rebuild their life to become better than it was pre-disability.

Right got that off my chest. I’m currently dying my hair ready for the Paralympic Opening Ceremonies tomorrow. Got to look good, even if I am one of 4000. If you see a red head in a chair who is out of time… it’s probably me!

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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 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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